tag:blogger.com,1999:blog-38564165683762827412024-03-13T10:53:55.026+11:00MoxieMe vs Non-Hodgkin's LymphomaAnonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-3856416568376282741.post-48787083810999618742013-07-02T11:08:00.003+10:002013-07-02T11:08:59.311+10:00Moxie: Who doesn't love surprises - with colours and a vi...<a href="http://moxiemoxiemoomoo.blogspot.com/2013/07/who-doesnt-love-surprises-with-colours.html?spref=bl">Moxie: Who doesn't love surprises - with colours and a vi...</a>: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com1tag:blogger.com,1999:blog-3856416568376282741.post-10434989696452083182013-07-02T11:08:00.001+10:002013-07-02T11:08:58.206+10:00Moxie: Who doesn't love surprises - with colours and a vi...<a href="http://moxiemoxiemoomoo.blogspot.com/2013/07/who-doesnt-love-surprises-with-colours.html?spref=bl">Moxie: Who doesn't love surprises - with colours and a vi...</a>: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-7677840984782206862013-07-02T11:03:00.003+10:002013-07-02T11:04:30.275+10:00Moxie: Who doesn't love surprises - with colours and a vi...<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;"><a href="http://moxiemoxiemoomoo.blogspot.com/2013/07/who-doesnt-love-surprises-with-colours.html?spref=bl">Moxie: Who doesn't love surprises - with colours and a vi...</a>: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...</span></div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-10536300806532561252013-07-02T11:03:00.001+10:002013-07-02T11:03:17.041+10:00Moxie: Who doesn't love surprises - with colours and a vi...<a href="http://moxiemoxiemoomoo.blogspot.com/2013/07/who-doesnt-love-surprises-with-colours.html?spref=bl">Moxie: Who doesn't love surprises - with colours and a vi...</a>: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-70964339231123890332013-07-02T10:58:00.001+10:002013-07-02T11:07:30.532+10:00Who doesn't love surprises - with colours and a view?<div dir="ltr" style="text-align: left;" trbidi="on">
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. </span><br />
<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">So I am now 31. I am officially "in" my 30s. And in spite of everything that's going on, I'm going to say 30 is a great age. I wouldn't go back to my 20s for the world. </span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">And my birthday. What a wonderful, endless adventure of loved ones, happy faces, long overdue catch-ups, laughs, craziness, good foo</span><br />
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">d and amazing company and SURPRISES. Oh my, so many surprises. </span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">Let me just talk you through the wonderful little surprise bundle that started a few days before my actual birthday.</span></div>
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<a href="http://1.bp.blogspot.com/-qKUKXBnLjLA/UdIlNioM3kI/AAAAAAAAAlQ/BSy7-uZwKpk/s1600/IMG_9345+copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-qKUKXBnLjLA/UdIlNioM3kI/AAAAAAAAAlQ/BSy7-uZwKpk/s1600/IMG_9345+copy.JPG" width="320" /></a></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">1. We surprised my friend Fleur who had come down from Sydney (also celebrating her birthday just days before me) by having our friend Michelle, who has been in South Africa for months, fly from Perth and surprise her at the apartment door on the day of my party. There were tears.</span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">2. I was surprised by a make-up artist to do up our pretty little faces for the party at the apartment - a present from older sister Jacq</span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">3. I was surprised by the arrival of two good friends Cam and Nicola from NSW to my party later that night</span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">4. I got three nights in a penthouse suite overlooking the Melbourne bayside - a surprise from three of my nearest and dearest awesome friends</span><br />
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<a href="http://2.bp.blogspot.com/-QkZoTC6q6TY/UdIYl4nun2I/AAAAAAAAAkw/oYDVIXzA_ms/s1600/pent.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-QkZoTC6q6TY/UdIYl4nun2I/AAAAAAAAAkw/oYDVIXzA_ms/s1600/pent.JPG" width="320" /></a></div>
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<a href="http://2.bp.blogspot.com/-U-85NMwyZGM/UdIZbKONRlI/AAAAAAAAAk4/jBCR0emeZ0Y/s1600/balloons.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-U-85NMwyZGM/UdIZbKONRlI/AAAAAAAAAk4/jBCR0emeZ0Y/s1600/balloons.jpg" width="320" /></a></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">5. My cousin flew down from London for a week and she showed up at my birthday brunch. Amazing ...</span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">As some of you may know, for my birthday I decided to hire an Southbank apartment and just have
people come over for drinks and tunes (though we didn't really have tunes, the sounds of voices drowned that out). We checked in at about 3, the surprises begin, then the people start rolling in ... and rolling in.
I think the most people in the apartment at one time would have been around
30-40 and well over 80 would have come through throughout the evening and night overall. It was
brilliant, but unfortunately with a crammed apartment comes noise and we had a
million noise complaints until it got to the point where they refused to let anyone else up, at about 10-11.
So out we went, to a really bad pub in a shopping centre on Southbank for a
while because security were on our backs, but it was OK because there was good company and drinks flowing. The end result was that it was a great night, and I thank all the people that showed up and made it such an awesome night. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">The next day we all headed to
Ringwood for my friend Fleur’s birthday party. It was a beautiful, sunny day with a crispness in the air,
also celebrated with old uni friends and cake, children running around, Just
Dance, fun times in a relaxing setting … another great day. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">That night I was just expecting to
relax at the apartment for the night, but when my girlfriends arrived to pick
up their bags, we realized we were hungry, and we
headed out on a mission to get pizza at about 10 at night. I was thinking we
were going just around the corner, but the girls were fixated on a pizza place
a friend had recommended. When we drove past Crown Casino, I wondered why were venturing so far for pizza at this time of night; it all seemed a little excessive, but I
just went along for the ride. Then all of a sudden, we were driving into a multi-level car park. “Um, why
are we in a car park? This must be some pizza place,” I was thinking, still
just blindly going along for the ride. It wasn’t until we actually got into an
elevator, and the girls pressed level no.40, and we headed up that I started to
think this was all really strange. We walked into a white hallway, the girls
pressed in a code, and as they
opened the door, there was an amazing penthouse suite, with the twinkling
lights of Melbourne stretched before me. “We’ve booked a penthouse suite for
three nights!!” the girls all laughed, and I swear my jaw hit the floor. I was
in a daze. “Is this even real?” The views were just breathtaking … we had panoramic
views from St Kilda and beyond across to the Westgate Bridge/Williamstown. I
couldn’t believe it. What an amazing, awesome surprise. (I was still hungry and
wanted pizza though, so we did go get that). <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">So it was a fantastic few days of
photos, watching movies, amazing food, jacuzzis, just awesome times with the
girls. The beds were like sleeping on giant marshmallows. It was luxury and we
lapped it up. I still had the apartment on my actual birthday, which was also
awesome. I had a beautiful brunch with my family and friends, and was surprised
to find my cousin Jemma, who has been in London for 14 months, sitting at the
table! There was also a send-off that day, as my brother headed off to
South Africa for three weeks. He gave me a bunch of 31 balloons which attracted a lot of stares. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">It was a beautiful sunny day in
Melbourne, so we spent some time wandering, riding ferries, having coffee, then
it was back to the apartment for delicious Vietnamese and some game playing.
Good times. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">I loved every minute if my birthday
and I am so thankful for it all. But every now and then, I felt some underlying
anxiety creeping back. Maybe it was seeing so many people in my life talking
about their futures and lives and me wishing that realistically, I could too.
The big question about whether it was my last birthday. I’d also been
experiencing a symptom over the last few weeks that had been worrying me a lot;
white lights had appeared in my vision, making it hard to read, write and focus
on things, and also a numbness in my forehead in the mornings. I’d had a lumbar
puncture (where fluid is taken from my spine and tested, and chemotherapy is
put in) but it had come up with no conclusive results of what it might be, as
my doctor thought it was an infection of the optic nerve. Anyway, I guess the
vision thing has really scared me. And changes in my body, like my very skinny weak legswhich is so unusual for me. I don’t even feel like myself. I
feel like my body is failing me, that things are deteriatiIng and things are
slipping away. I feel fatigued, like I can’t do little things, when I felt that
months ago I was building strength. I spent a lot of time looking out at that
cityscape at night or morning just wanting to hang onto it, praying to anyone
out there, to help my body get through this. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">After four glorious days of beauty, I
went to work. I was distracted and disengaged. I decided that maybe it was time
to give up this job. I need to focus on my health 100% at the moment. Also my
sight issues are making it really difficult. I think I just need some time to
sort myself out. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">So when I finally got back to my
apartment that night, I finally got the time to go through all the wonderful
cards, letters, poems, gifts and even text messages (I’d barely touched my
phone for days) and suddenly instead of this despair I’d been feeling, I was
filled with resolve. body what to do, and it’s
going to do it, or else. I am not going to let this disease win, I need to find
control of it. It’s a philosophy that fits in perfectly with the views and
experiences of Ian Gawler, whose retreat I am going to in a week or so. If
you’ve never heard of him, Google him, he has such an amazing story and his
book <i>You Can Conquer Cancer</i> is
changing my life. </span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">So I spent the weekend following my
birthday with wonderful family and friends. It was a great time. I even had a
few drinks and woke up feeling great. Sunday had brunch in the city and then
enjoyed a spontaneous football match (my first of the year) at a very sparsely populated
Melbourne Football Ground (Hawks v Suns – was almost the upset of the year but
alas no). Then dinner in Kew. It was a great weekend. I turned down tickets to Kraftwerk
in Sydney, even though I’m a massive fan, but I’m glad I did. Spending time
with my dearest and closest, especially those who had traveled from afar, was
so much better. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">On Tuesday I saw my doctor and we
spoke about my sight issues. The next step will be to get an eye test and MRI scan
to see what is going on. What it might be is all speculation at the moment, but
it is worrying me. It’s just always there, bothering me, and I don’t know where
it’s coming from, what it means, whether it’s permanent … but it’s just
something I have to deal with right now. We made arrangements that I would get
the MRI when I returned from the Ian Gawler retreat in mid June. Still no
answers but at least there is a plan. I spent that day out and about doing
quite a bit of walking. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">I decided to leave my Cancer Council
job to concentrate 100% on my health and get things sorted out. My last day was
yesterday, and that was a hard day. For a number of reasons. I found it really
hard going walking to work, which is only a 15-20 stroll. My legs were heavy. Maybe
it was tiredness from the day before, maybe it was something else. The forehead
numbness was bothering me. I couldn’t concentrate at work and at times I felt
very dizzy. Then I had to say goodbye to everyone, and that was hard. Such
wonderful people at that place and a piece of normality in my life that I must
put away for now. Maybe it was the stress and everything of that day that fell
on top of me and as I walked home I couldn’t stop crying, my vision felt so blurred,
and I felt so unsure about everything. I wondered if going away for 10 days to
the retreat was a good idea – what if my symptoms got worse? Is it more
important I get the MRI quickly? <o:p></o:p></span></div>
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More about the MRI later.</div>
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<span lang="EN-US" style="color: #262626; font-family: Arial; font-size: 14.0pt; mso-bidi-font-family: Arial;">I’ll probably be disappearing into a
vortex of meditation, yoga, good food, etc etc so don’t be alarmed if I don’t
answer my phone over the next 10 days or so.</span></div>
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<span style="font-family: Arial; mso-ansi-language: EN-GB;">You
know what, what I’m facing is full-on. It really is. Trust me I know it. LIFE IS BEAUTIFUL but maybe
death is the real adventure.<o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-67390549777962205722013-05-15T22:29:00.000+10:002013-05-15T22:34:30.049+10:00Yesterday is history, tomorrow is a mystery and today is a giftI'm going to start this post by saying I feel great today. Under the circumstances, that alone is a miracle. I have no pain, I am smiling, things are well. When I finally get around to telling you what’s been happening in the recent weeks of my life, maybe you'll be as amazed as I am about this too.<br />
<br />
To put things into perspective; exactly a week ago, I was sitting in the room with a palliative care registrar and nurse discussing how I was going to get through the next phase of my life, which unfortunately, I am now accepting, won’t be a particularly long one. I don’t think I can ever explain exactly how grim it is to be 30 years old and referred to a palliative care team, it is confronting and something I would never, ever have dreamed would happen to me. <br />
<br />
So it's been a while. There's going to be some history, it's going to get long, and it's going to be hard. When I last wrote I was on a waiting list for a clinical trial which, according to the doctors, was probably not going to work. The problem is, that my platelets (the cells in my blood that prevent bruising and excessive bleeding) needed to be at a certain level (150) for me to qualify, and for weeks they were hovering in the 90s. The doctors figured they were still bouncing back from my radiation therapy in February. <br />
<br />
So, basically, once again it was a waiting game, and I'm pretty used to those. As I have a large-ish tumour pressing on my bowel, my doctors gave me a list of symptoms to look out for and to alert them straight away if they arised, and then they could apply some more radiotherapy to alleviate these potentially dangerous symptoms that could land me in hospital if left unattended. <br />
<br />
Two months since my last scan, and I still have no symptoms. It's hard, because I just know they will come; but I am not going to spend my entire existence hanging on tenterhooks, worrying about every single change in my body. I'm just going to get on with things while I feel well. If the symptoms come, they come. But I refuse to anticipate them. The very strong dose of steroids I am on at the moment could be making a big difference as well. <br />
<br />
Anyway, whilst there was little happening treatment-wise, there was a lot happening in other parts of my life. I did an amazing trip to the NSW South Coast over Easter to be with friends and family and it was so beautiful and peaceful and amazing. Then, it wasn't the monumental marking of the end of my stem cell journey and start of my new life that it should've been, but it was fantastic all the same: I got my Hickman's Line removed. I'd had this tube of plastic inserted into the top of my right breast for six months. It was a Godsend during my transplant in the sense that it enabled me to receive medications and get blood taken with ease without my dead veins being bothered by needles. I could tuck it away underneath my clothes and no one would know the difference. After all my Day 100 check-ups were over, however, all it presented was a reminder that I was not normal; that I couldn't swim or bathe (in Melbourne's hottest summer in years) and it was also an infection risk. So out it came. All I had to do is lie in bed, breathe in, and the nurse pulled it out of my chest, and she had to pull it hard. It didn't hurt. But wow, it's gone, and I am glad. And thus far my veins are co-operating with medical staff.<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-G12AEJLbPtA/UZN8S9gW7XI/AAAAAAAAAkE/UH1oBxeXSb8/s1600/nethercote.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="http://4.bp.blogspot.com/-G12AEJLbPtA/UZN8S9gW7XI/AAAAAAAAAkE/UH1oBxeXSb8/s1600/nethercote.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Easter in Nethercote ... bliss</td></tr>
</tbody></table>
<div>
Another thing is that I work for Cancer Council Victoria now, two days a week, as a media assistant in their Cancer Prevention Centre communications department. I love it. I love the routine, I love the sense of purpose, I love the people I work with and they are very flexible to my needs. <br />
<br />
I've published two blog posts on their behalf since starting with them:<br />
<br />
<a href="http://blogs.crikey.com.au/croakey/2013/04/11/digital-media-and-junk-food-advertising">http://blogs.crikey.com.au/croakey/2013/04/11/digital-media-and-junk-food-advertising</a><br />
<br />
<a href="http://www.cutyourcancerrisk.org.au/blogs/clinical.html#.UZHvHaUWwUU">http://www.cutyourcancerrisk.org.au/blogs/clinical.html#.UZHvHaUWwUU</a><br />
<br />
I travelled to Tasmania, and I fell in love with our island state, visiting markets, eating amazing food, exploring idyllic islands, being surrounded by seals, exploring the Southern Ocean, seeing stunning landscapes. Then a few weeks later, I was on the very other side of the country, in Darwin, witnessing sunsets like no other, enjoying 350-degree heat, watching crocs jump right in front of me, swimming in rockpools and waterfalls ... another one ticked off bucket list: I have now visited every state and territory in Australia, and every capital city. And I tell you what, I love this country. I love it. There's more to tell you about Darwin, but we'll get to that. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-6XoUOpU8pyc/UZN8Jj7ORmI/AAAAAAAAAjs/EDZ-XKmXtLA/s1600/bruny.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-6XoUOpU8pyc/UZN8Jj7ORmI/AAAAAAAAAjs/EDZ-XKmXtLA/s1600/bruny.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My cousin and I on Bruny Island, Tasmania</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div>
Another bucket list item: I popped my bridesmaid cherry. Saw an old, dear friend get married. That weekend was one for the history books; it felt like a movie (think <i>The Hangover</i>) at times, but an awesome experience and I am so happy for her. </div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-zs7jEXvlrNk/UZN8HioE78I/AAAAAAAAAjc/KOoNFdRafLE/s1600/bridesmaids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="http://2.bp.blogspot.com/-zs7jEXvlrNk/UZN8HioE78I/AAAAAAAAAjc/KOoNFdRafLE/s1600/bridesmaids.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wedding belles</td></tr>
</tbody></table>
<div>
So, to Darwin. I had five days booked at the Tope End with two of my awesome girlfriends. In the lead-up to this trip, I'd been getting weekly blood tests, and they were coming up a little bit weird. Platelets still low, but the most concerning thing was that my white blood cells had plummeted to pretty much rock bottom. Well, I guess that explained why my mouth was full of horrible, irritating ulcers. This was incredibly annoying because it meant I was at big risk of infection. But more pressing was the bigger issue: why are they so low? This is isn't supposed to be happening and could mean something very sinister is happening in my bone marrow. Nonetheless, the doctors knew how much this trip meant to me, and they sent me off with a contingency plan: a GSCF injection to boost my white blood cells before I left, a supply of oral antibiotics, and instructions to check into a hospital in Darwin if I had temperatures or was feeling unwell. What a pain in the ass. But the heartbreak of having to cancel my trip to Cairns last year because of a relapse was fresh in my mind, and there was no way I was cancelling this trip. So I took the red-eye to Darwin and off I went. <br />
<br />
Everything started well. Darwin was hot, mildly humid (35 degrees every day) but it certainly wasn't unbearable. Me and the girls got out and about, loving being together and exploring NT. I kept an eye on my temperatures, and there were times they were high, and I ignored them, then they'd come down again. But after one bigger night than usual, when I'd had little sleep, I woke up and I had two high-grade temperatures: 38.4. I decided I couldn't ignore it anymore; I had to do the right thing. My friends drove me to Darwin Hospital. I can't fathom how stressful this whole experience must've been for them, but they handled it so well. </div>
<div>
<br /></div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-AN7vj9LcS-E/UZN8M6UWiNI/AAAAAAAAAj0/dRRJFUoy0HQ/s1600/darwinsunset.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-AN7vj9LcS-E/UZN8M6UWiNI/AAAAAAAAAj0/dRRJFUoy0HQ/s1600/darwinsunset.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunset in Darwin</td></tr>
</tbody></table>
<div>
<div class="separator" style="clear: both; text-align: center;">
I won't go into the detail of how patronising and out of touch the triage nurse in the Darwin Hospital emergency department was towards to me, but to sum it up: after I had relayed the fact I was two-time stem cell transplant patient, had no neutrophils, and the situation was quite urgent, he leaned into me and said in a low voice: "I think you might have a UTI." I stood there just looking at him, my jaw was just open in disbelief. Oh my, Mr Triage nurse, how I WISH it was just a UTI. Anyway the most important thing is that I got straight into ED with no waiting, which is what is supposed to happen - a cancer patient with a temperature is an urgent situation and can be life threatening. At least that message got through and I was called up right away. </div>
</div>
<div>
<br />
Blood was taken from me. I waited with bated breath for the results. "They'll be normal and I'll get out of here," I hoped and prayed, my fingers crossed for dear life. But when they finally came back, I was devastated. My white blood cells were still rock bottom at 0.8; my platelets had dropped to 70, and suddenly it hit me. The lymphoma is in the bone marrow. This dark, dark, blanket of anxiety fell over me and I said, "I think this is the end."God I can't even imagine how my friends must've been feeling at this point. I was admitted, given sleeping meds, moved to my own room in the burns/surgical unit (which was quite dark and 70s-looking, felt a bit like a jail cell really). <br />
<br />
In the end, I spent two nights in Darwin Hospital, which I will tell you was a cultural experience. Thankfully I had the most beautiful nurses, one of which gave me a big hug, an NT-born and bred lovely woman. And you know what it wasn't THAT bad. It was probably two days of enforced rest I needed. We had to cancel a trip to Katherine Gorge which in hindsight would've been too much anyway, but my friends coped, and so did I. I'd had no temperatures whatsoever since I'd been admitted which told me that it wasn't an infection - so I threatened to self-discharge the morning of my last day in Darwin because my friends and I were going to go out and have an amazing day. The doctors, who were really lovely, let me go anyway. We had the most amazing day at Litchfield National Park, it was the perfect end to our trip. I swam in rock pools and waterfalls and just lapped up the beauty of our tropical territory. Then it was back to Darwin for dinner, a few hours sleep, and then up at the crack of the sparrows to catch a morning flight home to Melbourne. </div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-EaeCIK5w44Y/UZN8PJwPG4I/AAAAAAAAAj8/hNof9Xz2SdI/s1600/litchfield.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-EaeCIK5w44Y/UZN8PJwPG4I/AAAAAAAAAj8/hNof9Xz2SdI/s1600/litchfield.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last day in Darwin ... beats hospital!</td></tr>
</tbody></table>
<div>
I cried the whole four-hour flight back to Melbourne. I was such a mess. I collapsed in a heap of anxiety and fear. I felt helpless. I felt scared. But I tell you what, I was so happy to see my mum at the airport; I realised how much she meant to me and how much I needed her. All this time I thought I could beat this cancer, right from the very beginning, when I sat alone in a hospital emergency bed in London adn told me from day 1 I had lymphoma. Now I didn't have that anymore. I felt like all was lost, and I just didn't know how I was going to get my head around that. Darwin was a reality check. <br />
<br />
My doctor pretty much confirmed all my fears the next day. He told me he was 99% sure the lymphoma was in my bone marrow, and after two stem cell transplants, that is very bad news indeed. He told me very directly, "I don't think we're going to beat this." That was when he referred me to palliative care. I sat there, lost in despair. I am 30 and my life is over. He talked to me about how I was going to find the balance between hope, and the realities I was facing, over the next few months, and I said, "I don't think there is hope. Now it's about finding peace."<br />
<br />
I do believe in the power of the mind. As I headed back to the waiting room, swollen-eyed and devastated, a lady next to me who had had numerous stem cell transplants and relapses told me, "The power of the mind is mightier than the sword." These words offered little comfort to me at the time. How could I have been any more positive about my journey from the start? I just don't know how. <br />
<br />
I guess at this time, anger was burning inside of me as well. I find myself looking at older people on trams and trains and thinking, "I will never get to that age." I envy those people sitting in their seats, with nothing else to worry about but what they're going to have for dinner tonight or whether they can be bothered to go to yoga class tonight. Oh how I envy and long for that kind of normality again, a normality that seems out of reach for me at the moment. And I still have so much to give this world. When I think of my own family and friends at my own funeral, I choke up so much I can't even bear it. I have always accepted my situation and understood that I am not the only person to go through this. But now I find myself asking "Why? What have I done to deserve this really?" But there were never any promises that life would be easy. For many it's full of hardship and there's no making sense of that. This lymphoma was always out to get me. <br />
<br />
I recall a story from years ago, when I was with a group of friends and they probably don't even remember this, but I do. It was back when I was living in NSW, and I told them I had a feeling that I was going to die young. They were understandably creeped out by this comment and questioned me on my reasoning for this. "I don't know," I said. "I just feel it; and when I look at the way I live my life, I feel like I am trying to cram everything I can into every moment." I was trying to fit in so much. Living hard and fast, that's what I do. Maybe it was just a stupid thing to say. But I am also very strong-minded and maybe I was equipped with that to get through this whole ordeal too. Maybe there are reasons and destinies, I don't know. I can't say I have had a hard life but I most definitely have had my share of drama; my life has been anything but sedate. I am surprised that I haven't just disintegrated into a pool of depression by now. I guess if anyone has taken anything life-changhing from my journey than I have served a purpose. I have also realised what an absolutely amazing, loving, supporting family and group of friends I have around me; and that's also something. I could've gone through years and years of life never fully knowing that, deeply. If love was currency, all the money in the world couldn't repay what my family has done for me. <br />
<br />
Whoa, heavy, hey. Let's move on. So what's next for me?<br />
<br />
<b>Options category no. 1. Chances of happening: extremely/100% likely</b><br />
<br />
<u>Radiotherapy. </u>This is for the tumours in my abdomen. Surprisingly since my last scan 2 months ago, I have not had any symptoms, as I mentioned before. I saw my radiotherapy oncologist last week and I think he was surprised at how well I was doing. He rattled off a list of symptoms that were all reported in the negative, had a feel of my abdomen and then decided that rushing into radiation was not the right move for me at that present moment. The radiation would mess with my blood counts and I'd need infusions, and that is something I need to avoid. He said if I report symptoms immediately they can get me in for radiation quickly to turn things around. I got a CT scan done but I have heard nothing about the results. Radiotherapy is in my future, I just don't know when. It's not going to get rid of the lymphoma. It's just going to control the disease so I don't have complications. The only thing is that there is only so much radiotherapy my organs can be exposed to. <br />
<br />
<u>Alternative therapies/healing.</u> I’m looking into these but I’m keeping an open mind as you can understand. These are more to help me prolong my life and help me heal, and mentally cope with the situation I face in front of me. I still believe anything can happen. Every day I wake up and I say to myself “I have a life to live.” Some days I put on my Hope necklace and Wonder Woman T-shirt I bought for $2 from Ballarat and pretend it’s some kind of armour. Sometimes I look at my determined eyes in the mirror and say, “I’m not going to let this happen to me”. I don’t know if I truly believe it or if it will work. I’ve looked into herbal treatments, therapies, foods, etc … I’m not writing anything off. I have always been the rational-minded person, putting my faith in science and facts over anecdotal evidence and unproven theories and ideas. But I can feel my mind changing about this. Anything really can happen. I have booked myself into an Ian Gawler cancer retreat in the Dandenongs for June, and I am looking forward to this. Meditation, organic food, healing, all in beautiful surrounds with others facing the same journey. <br />
<br />
<b>Options category two. Chances of happening: hmmm, pretty unlikely</b><br />
<br />
<u>Clinical trial.</u> This is only if my blood counts magically come up, and well, it doesn't look like that will happen. That said I haven't had a blood test for a while so who knows what's happening. About a week after Darwin my platelets went up to 105 but dropped back to 70 the following week, and my white blood cells went through the roof because of the GSCF injection I had received the previous week. At least the injection had worked; the one I had before Darwin it had failed. My blood counts are my biggest worry.<br />
<div>
<br /></div>
<div>
The trial also comes with its risks, and it would tie me to the hospital somewhat. It's not a great option anyway. In the coming weeks I will see my original oncologist at Peter Mac and discuss every single option I face and the risks, more for mental closure than anything.<br />
<div>
<br />
<u>Chemo. </u>The <u>d</u>octors certainly aren't pushing this, and it is not a recommendation, and maybe not even a possibility. Chemo is not going to cure me but I wondered if maybe it shrunk the tumours down enough I could then receive radiotherapy. Radiotherapy is the ONLY thing that has had any success. The doctors say chemo will only land me in hospital, give me a poor quality of life, and is likely to achieve nothing. I don’t want chemo. But I don’t want to give up either. I feel like I’ve tolerated everything so well that I could keep going, but maybe I underestimate exactly just what my body has been through. <br />
<br />
<b>Options category three: Chances of happening: zero or maybe 0.00000001%</b><br />
<br />
<u>Extraterrestrial intervention.</u> I get abducted by aliens and taken to a planet where they have cancer cures. You just never know, right? <br />
<br />
Yeah OK maybe I shouldn't joke about this but if "you're not laughing, you're crying". </div>
<div>
<br />
Anyway I will conclude with a nice trip I had to Gippsland. I got to spend a wonderful day with my mother, who has been my absolute rock throughout the hardest 18 months of my life. I wish more than anything that things could have been easier, but I have felt and received love and support I may never have realised in a lifetime. I am lucky in that respect. I was never a “mummy’s girl” at any time in my life and there have been many times that my mum and I, such different people, haven’t seen eye to eye. But when I think about my mum now I am just filled with love and gratitude and I feel so, so blessed to have her. I also got to spend time with another amazing woman and role model in my life, my Oma, who is 88 and still so sharp, and generous and amazing. She is helping me fulfil my goal of going to this cancer retreat as have a group of my mother's colleagues who held a fundraiser for me last year and for that I am so grateful and touched. During my Gippsland jaunt, I also went to church. I don't know if I could call it a spiritual ephinany as such, but I was amazed when the sermon that was delivered, by my father's friend, seem to speak right to me. It was about finding hope when you find yourself in a situation of complete bleakness, despair and helplessness. I've always believed that the universe is random and while I never completely turned my back on spirituality, I certainly do not follow one God nor believe he will heal me. I used to believe things “happened for a reason” but that was back when nothing really that bad happened to me. It's hard to find a reason why this is happening to me, but if I can help change someone's life from my experience maybe that is it. </div>
<div>
<br />
So I am digging into that little reserve of hope. I do believe in the power of the mind. Doctors can be wrong. Anything can happen. I need to look past the bleakness and I need to keep getting on with this and doing everything I can to prolong my life and opening my eyes to other possibilities. Medical science has failed me, but maybe that’s not all there is. </div>
<div>
<br /></div>
<div>
I also caught up with some old, dear friends, I received beautiful gifts from people I hadn't met but have read my blog (thank you, you know who you are), and then I found that some of my parents' neighbours are holding a fundraiser for me and the Peter Mac Ride to Conquer Cancer bike ride this June. My trip to Gippsland was a wonderful and cleansing experience after such a bleak week. </div>
<div>
<br /></div>
<div>
Oh yeah, and I'm blonde now. Because why not. And next week I turn 31, and this weekend I plan to party the only way I know how.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ZrRk3cnu7t4/UZN8IZhVPiI/AAAAAAAAAjk/Kzw3eT4ETA0/s1600/blonde.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="http://1.bp.blogspot.com/-ZrRk3cnu7t4/UZN8IZhVPiI/AAAAAAAAAjk/Kzw3eT4ETA0/s1600/blonde.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cue blonde jokes</td></tr>
</tbody></table>
<div>
"Where there's life, there's hope." It's not over yet.</div>
</div>
</div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com4tag:blogger.com,1999:blog-3856416568376282741.post-55820430302241499262013-03-22T12:28:00.000+11:002013-03-22T12:28:23.627+11:00Words escape me.
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<span style="font-family: inherit;">It's been a tough week. As some of you would know, I had a PET scan last Thursday. I didn't get a call from my doctor about the results until 6.30pm the following Friday. In the meantime, I was tied up in knots; I felt an anxiety even greater than I had ever experienced for any of my previous PET scans (all 12 of them). With good reason, it turns out. </span></div>
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<span style="font-family: inherit;">I knew on Friday that my results weren't good. But I didn't get to discuss this in more detail with my doctor until the following Monday. This consultation was difficult. It was the first time, in my whole 17-month journey, that I was told the doctors did not believe that any treatment options for me were going to be curative. </span></div>
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<span style="font-family: inherit;">At the moment my only hope (and I’m talking the smallest sliver of hope here) is a clinical
trial possibly followed up by some radiotherapy. But my doctor doesn’t even
sound confident about that, and he said he doesn’t want to instil me with any false hope about what I am facing here. And that’s not at danger of happening, I think that tank is running pretty low now. <o:p></o:p></span></div>
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<span style="font-family: inherit;">In a nutshell: the good news (yes, there is some good news, hidden among this steaming, shitty pile of bad news) is that the radiotherapy worked. I have no lymphoma in my chest. No lymphoma in my arm. And the doctor says it probably won’t come back.<o:p></o:p></span></div>
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<span style="font-family: inherit;">The bad news (and this is MAJORLY bad news) is that while I was busy getting radiotherapy in my chest, the cancer was growing elsewhere, and it wasn't holding back. As a result I have about five or six tumours across my abdomen, and a couple of them are very big, and very active, and pressing against some very important organs. One is spread below my breastbone, just outside the radiation field in my chest. One is pressing against my bowel. Then there are others dotted across my lower body. The lymphoma is still alive and kicking, unfortunately. The sub-editor in me wants to name this "Lympossible", because as my doctor has said, this cancer is proving impossible to eradicate. <o:p></o:p></span></div>
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<span style="font-family: inherit;">So the options are running thin. Radiotherapy at the moment is not an option. The tumours are too big, and the areas too sensitive for them to use “eradicative” radiotherapy (radiotherapy strong enough to completely get rid of the tumours). Boosting my new immune system with Interferon is also not going to work. Once again the tumours are too big, and they’re not confident my immune system wants to do anything anyway, it just isn’t showing any signs of fighting. Standard chemotherapy isn’t a good option either – the doc says this could make me very unwell, land me into hospital for an extended period of time and it might not do any good. He doesn’t deem that a good use of my time, when I am basically feeling well right now. </span></div>
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<span style="font-family: inherit;">So my doctor has recommended that I go on a clinical trial. There is a trial I am eligible for, but my platelets must be at an appropriate level before I can proceed. Last week my platelets were low but increasing, and on Monday I will get another test to confirm whether they have reached a suitable level. I will probably also need a biopsy (a simple day procedure) and perhaps a few other logistical things will need to be sorted out. At the moment I know very little about what the trial will involve. I have no idea how intensive it will be. I don't know if it will work and I am certainly not relying on it, because this is no tame lymphoma we are dealing with, this is a monster. To absolutely wipe out every single tiny little cancer cell is going to prove a monumental task and I don't know if it's going to happen. </span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So, psychologically, where am I at? I’m upset, obviously. It is not easy being told at 30 years old</span><span style="font-family: inherit;"> that I have a cancer that is basically impossible to treat. That I am basically at the end of the line here. But you've got to remember that I have been facing this for a long time now. Last year I was in a very similar situation, where my doctors did not believe I would even make it to my second stem cell transplant. I made it, against the odds, but now a bit less than a year later, I find myself back in the same situation, facing the full brunt of my mortality once again. I don't know how many get-out-of-jail cards I have, but I do keep in mind that anything is possible. </span><span style="font-family: inherit;">I have thought about death, I have thought about this crazy cycle of life, the ways of the universe and what little control we have over this ... once upon a time the thought of being told by an oncologist that there is "nothing more we can do" was incomprehensible, but now I am in that situation and sometimes it feels surreal. But at the end of the day I'm not that surprised, just sad.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I have remained optimistic all the way throughout my journey, but I am also a realist. I've seen the scans, I've talked to doctors, I've been reached the darkest depths and most resounding highs throughout my journey and I have no delusions about what I am facing here. The journey ahead of me now feels comparable to crawling into a boxing ring to face Mike Tyson or Anthony Mundine, fists raised, with absolutely no boxing experience behind me whatsoever. If something works out for me from now on, then lucky me. But I also think it is important for me to accept that there is a strong probability that things won't work out.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">However, please do not think I’m going to turn into some depressed, sad, shell of a person over
this. Over the past week I have felt I have had some "grieving" time to deal with the fact that my life could be over at 30. But I will be throwing everything into taking my mind off dying, and into living. I still have many things I want to achieve this year and I will be doing them. This morning I had a meeting at The Cancer Council to discuss working there as a volunteer media assistant two to three days a week. At the moment I feel like I need a distraction and a routine; something to occupy to mind as I go through this difficult period and it's something I really want to do. Last week I went into Royal Melbourne and spent some more time in the recording studio, to work some more on my song that might be featuring in a CD compilation. I have dreams of going to America this year and whatever happens, I <i>will</i> make it there. I have also been looking into other therapies, here and overseas, which I will be discussing with my doctors when I get a chance. I remain open-minded, within reason of course.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-nL2jhDjJBhc/UUuvUGqcWeI/AAAAAAAAAiw/wuHpbcarJMA/s1600/IMG_1146.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-nL2jhDjJBhc/UUuvUGqcWeI/AAAAAAAAAiw/wuHpbcarJMA/s1600/IMG_1146.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and the sound engineer in Royal Melbourne's recording studio</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;">And let's not forget the wonderful things that have happened over the last few weeks –
an amazing family reunion to celebrate 60 years in Australia (you’ve probably heard it here before, I have the
most amazing family in the world) last weekend, a trip to a friend's leafy retreat in the Dandenongs where I enjoyed awesome company and some dancing in my underwear, a free gig to go see Peter Murray (who I also got to meet backstage), provided by the wonderful RMH music therapist Emma O’Brien and early next week I am going to feature in the Q&A audience which will be filmed out at Werribee - yes I am a complete political nerd and this excites me immensely (look out for me on ABC1, Monday night, 9.30pm). </span></div>
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<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-DBwomIA7VmU/UUuo0BCX4XI/AAAAAAAAAio/e-dmK4sIlrU/s1600/familyreunion.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-DBwomIA7VmU/UUuo0BCX4XI/AAAAAAAAAio/e-dmK4sIlrU/s1600/familyreunion.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and my cousins (just a small sample)</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-t-P42LdsN5U/UUuvUEu3Y0I/AAAAAAAAAi0/VBmlF_NbapI/s1600/IMG_1142.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-t-P42LdsN5U/UUuvUEu3Y0I/AAAAAAAAAi0/VBmlF_NbapI/s1600/IMG_1142.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh hai Pete Murray</td></tr>
</tbody></table>
So for now I am killing time until I get approval to go ahead with the trial. They have put me back on a hefty dose of steroids in a bid to keep the tumours in check. So I am once again just trucking on in the only way I know how. Fortunately for me the cancer is not causing any real symptoms at the moment and I am feeling as well as I have been. I guess that's what also makes it hard to swallow: I feel and look well, better than I have in a long time, how can it be true that I am facing the real possibility of a death sentence? All I can keep focusing on is that I do feel well and will continue to make the most of that fact.<br />
<br />
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com4tag:blogger.com,1999:blog-3856416568376282741.post-23896582833831770392013-03-07T19:49:00.001+11:002013-03-07T19:49:10.001+11:00So, on a more positive note ...<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: inherit;">I started writing an update about my current situation, and then when I read it back, it just came across as really boring. Because really, not that much has been happening in the past few weeks. I have been undergoing treatment, but I have no idea how successful that has been until I get my scan next week. At the moment it is just another waiting game. So I thought, to make this post a little more exciting, I would share something that I have been a little bit shy about putting on here, but a lot of people have been asking me about it so I think it's time.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">During my allogeneic stem cell transplant in November I had the pleasure of meeting Royal Melbourne Hospital's music therapist Emma O'Brien. In a welcome disruption to my days of isolation on the ward, Emma would burst into my room brandishing her Cole Clarke guitar and an iPad packed full of song chords, and we would happily whittle away thirty to forty minutes singing classics from some of my favourite artists like Fleetwood Mac and The Cure.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">The idea came about to combine our skills and write a song, so during my admission I put pen to paper and scribbled down some poetry that captured some of the loneliness and underlying hope that filled my days on the ward. I didn't see Emma again until following my discharge, but when I turned up to her studio (yes, after much campaigning and fundraising, Emma has her very own recording studio at RMH) I had a handful of notes ready to be put to music. After playing a few chords, shuffling around the verses, adding a line here and there, Emma and I had a song.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;"><iframe frameborder="no" height="166" scrolling="no" src="https://w.soundcloud.com/player/?url=http%3A%2F%2Fapi.soundcloud.com%2Ftracks%2F78721974" width="100%"></iframe><br /></span>
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">You can read the lyrics here:</span><br />
<span style="font-family: inherit;"><br /></span>
<b><span style="font-family: inherit;">Time in the sun</span></b><br />
<span style="font-family: inherit;"><br /></span>
<i><span style="font-family: inherit;">Like every drip of saline, the days slowly trickle by</span></i><br />
<i><span style="font-family: inherit;">Outside my misty window, the city gently sighs</span></i><br />
<i><span style="font-family: inherit;">I'm climbing the four walls of this glass cocoon</span></i><br />
<i><span style="font-family: inherit;">Somebody please tell me I'll be out of here soon</span></i><br />
<span style="font-family: inherit;"><i><br /></i>
<i>The city skyline is spattered with rain</i></span><br />
<i><span style="font-family: inherit;">I can't wait to feel the sun again</span></i><br />
<i><span style="font-family: inherit;">On my face again</span></i><br />
<span style="font-family: inherit;"><i><br /></i>
<i>We could turn this glass oasis into a holiday for two</i></span><br />
<i><span style="font-family: inherit;">Where there's sun and laughter, and plenty of things to do</span></i><br />
<i><span style="font-family: inherit;">I've got to get my head from now to then</span></i><br />
<i><span style="font-family: inherit;">I will have my time in the sun again</span></i><br />
<i><span style="font-family: inherit;">In the sun again</span></i><br />
<span style="font-family: inherit;"><i><br /></i>
<i>Every day, as I'm bound to this pole</i></span><br />
<i><span style="font-family: inherit;">A bit of sunshine drips into my soul</span></i><br />
<i><span style="font-family: inherit;">Drips into my soul</span></i><br />
<span style="font-family: inherit;"><i><br /></i>
<i>Panadol for pina colada</i></span><br />
<i><span style="font-family: inherit;">Skyscrapers for the sea</span></i><br />
<i><span style="font-family: inherit;">IV for a sun umbrella</span></i><br />
<i><span style="font-family: inherit;">This is where I long to be</span></i><br />
<span style="font-family: inherit;"><i><br /></i>
<i>Panadol for pina colada</i></span><br />
<i><span style="font-family: inherit;">Skyscrapers for the sea</span></i><br />
<i><span style="font-family: inherit;">Ocean through a stethoscope</span></i><br />
<i><span style="font-family: inherit;">This gives hope to me</span></i><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">So, I'll cap this off with a condensed update:</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Radiotherapy is over. There are not many 30-year-old Melburnians who can claim to have a "radiation tan" but I certainly have one. (Forget the solarium, try a radiation machine! And it actually gets rid of cancer, instead of causing it!) And it's in a kind of heart shape, on both my chest and back. Apart from an icky armpit rash, a few flat days and a dull sore throat on some mornings, radiotherapy was ultimately a walk in the park compared to everything else I've been through. But after five weeks of appointments five days a week, you can imagine how relieved I am to tick that treatment off the list. </span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">But as is typical with my journey, one chapter closes, and another begins. As radiotherapy drew to a close, I began my injections of the drug Interferon. Interferon is a pretty commonly used drug that can be used to treat things like Hep C and MS. For me, the aim is to activate my immune system (or Megan's, should I say) so that it can fight the lymphoma. The plan is to keep upping the dose until I get graft vs host disease (GVHD). The Interferon comes in the form of a pen, similar to the Epi-pen used for allergic reactions. I have to inject myself, to the stomach, three times a week. This hasn't really been a problem - just last year I had to give myself twice-daily injections of Clexane for three months, and the needles for that were far bigger. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">With my next PET scan looming (No. 13, dun dun dun) I would be lying if I said I am not starting to feel some pre-scan anxiety creeping in. Last night in bed, I had a sudden case of the sweats: <i>What if the PET scan isn't clear? What if I run out of options? What if?</i> But I have been here a million times before and I am pretty skilled at pushing these thoughts in the darkest depths of my mind. As they say, "Ignorance is bliss". I don't want to spend my days wracked with stress and anxiety, so I am just focusing on the best thing I can focus on: that <i>right now</i>, I feel good. </span><br />
<span style="font-family: inherit;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-jUZCmRmgOaU/UThS9bga0kI/AAAAAAAAAic/8vHZ__TgpnY/s1600/hakeem.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-jUZCmRmgOaU/UThS9bga0kI/AAAAAAAAAic/8vHZ__TgpnY/s1600/hakeem.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I have hair! Though admittedly not as much as my two-year-old cousin Hakeem</td></tr>
</tbody></table>
<span style="font-family: inherit;">I am hoping more than anything that next week's scan comes back clear. But my ultimate goal goes a step further than that: I'm aiming for TWO clear PET scans in a row, something that has never happened for me. Once I reach that goal of two in a row I will be booking a trip to the US. What better place to celebrate being healthy again than New York City?</span><br />
<span style="font-family: inherit;"><br /></span>
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<span style="font-family: inherit;">If my PET is all good, I will be leaving my North Melbourne apartment, which makes me a little sad because I absolutely love this city and this area, but I am also looking forward to moving onto the next phase. I will have to head back to Gippsland to regroup and work out the next step but I am pretty sure I will end up back in Melbourne. As per usual I am not planning too far ahead. I've been here before; thinking I was on the home stretch and about to get on with my life, only for things to come crashing down. Instead of returning to
the comforts of “normal life” I faced more treatments, more anguish, more
uncertainty. Now, I feel reasonably optimistic but it’s so hard to let
myself even dare to dream that I might be anywhere near the finish line. But that’s what
I do, it doesn’t matter how many times life kicks me in the guts, I still look
forward with blind, naive optimism. And even though life has been pretty nasty to me lately, I still really do love it. I have to. </span></div>
</div>
</div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-25379295744745894452013-02-23T18:09:00.000+11:002013-02-23T18:19:42.317+11:00Every second counts ...This was supposed to be a positive post. I had lots of good news to give. I had my final radiotherapy session last Thursday. The sun has been constantly shining (a rarity in Melbourne). I have hair - and I am absolutely loving this short pixie do that I would never have had the guts to try out otherwise. I am putting on much-needed weight. I am down to a low dose of steroids (10mg a day) and haven’t crashed yet. I feel strong, I have energy, and I am very rarely at a loss of something to do. In recent weeks, all I have been focusing on is how good I have been feeling, and stopping my mind from drifting too far ahead (PET scan on March 14, gulp).<br />
<br />
But I write this entry with a heavy heart. Last week a friend of mine was killed in an accident. We went to the same high school (we were in the same class from year 7-9), went to the same university and was someone I respected greatly and would always make time for. Absolute top guy, who has left a massive gaping hole in so many lives. It saddens me that I will never see him again, hear him tell his hilarious stories, reminisce about school days and just have a chat and a laugh. What makes it even more tragic is that another one of my classmates, who was from the same friendship group, passed away suddenly only weeks before. Both these people have left behind partners, parents, siblings, close friends and colleagues, and I can’t even begin to fathom the shock and sadness they must be experiencing. In the last five years, my year level, Class of 1999, has said goodbye to four classmates. I’ve only just hit 30, and I really don’t want to attend any more funerals. It just isn’t right.<br />
<br />
There is really no way to make sense of it, I’m not even going to try. All I can take away from this is the fact that life is fragile, and you really can’t waste a single moment. I tend to talk a lot about doing things, but laziness or whatever else will make me put it off or fail to get around with it. I’ve decided that has to change. I hope most people I know live long and happy lives, but you just don’t know what is around the corner. Make sure you are living the life you want to live now. Not tomorrow.<br />
<br />
Another thing I have learned is that my year level is full of inspiring and wonderful people. The classmates we have lost were wonderful, dynamic people who lived full lives and brought a lot of joy to a lot of people. But also, to see the way my fellow school friends rally around each other at grief-stricken times like this, is truly moving. I know from my own experience that my classmates are thinking of me and wishing me the best on my own journey, and I have reconnected with a lot of awesome people. It doesn’t matter how many years have passed or how often you have seen that person in recent years, these people still manage to reach out and put a smile on your face. I don’t think I ever stopped to think about that before. I feel really proud to be have graduated with Catholic Regional College, Traralgon's Class of 1999. A top bunch!<br />
<br />
Despite these recent tragedies, I am making sure I remain as positive as I can about my own situation. If anything, it has given me more resolve to beat this thing - I don’t want to put my year level through any more heartbreak.<br />
<br />
Sad, but pressing on. Next post will be more positive, I promise. Live for today, plan for tomorrow, love to the fullest.Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-58967055281952689362013-02-07T23:26:00.003+11:002013-02-08T00:04:03.984+11:00100 days ... but who's counting?<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">One-hundred days ago, I was sitting in isolation in the Bone Marrow Transplant ward of the Royal Melbourne Hospital, anxious but full of anticipation about the journey ahead. My white cell blood count was written clearly on the whiteboard: zero; meaning that my bone marrow was primed for the its new stem cells to arrive. The infusion was quick and simple and uneventful, but the procedure was potentially life-saving. Sitting there on day zero, I felt the weight of the monumental task ahead. At that stage, Day +100 felt like an elusive dream.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Well I've made it. I'm officially at Day +100, that magic day. But it's not the happy milestone I expected: it's just another day. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Day +100 has been mentioned a lot in this blog, and some of you might wonder what is so special about it. Day +100 is what every bone marrow transplant patient is striving for, because, ideally, on this day, they are set free from the hospital regimen of weekly blood tests, check-ups and scans. It means they have got through the 'danger period' and on their way to recovery and independence. It is the day they walk out of the hospital and get on with their lives.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Today I didn't get to do that. While essentially, I was able to walk free of one hospital, I am walking right into another, and my treatment is ongoing. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I don't really care to dwell on it; Day +100 as a milestone is uneventfully over, but this just means I get to create another. I know better than any other person that things often don't go to plan. I have often likened my journey to sitting on a raft being pushed down a river, and I simply have to go where the river takes me. If I hit rapids, there is no sense in fighting, I simply have to ride it out and have faith that I am going to get out the other side. This visual metaphor has been a very calming influence for me.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So in the past three weeks or so in which I haven't wrote, many things have happened. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">1. Slight changes to the game plan, again</span></b></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span style="font-family: inherit;">Last time I wrote, the plan was to get 25 sessions of radiotherapy to shrink the tumour in my chest to a manageable size, so that the graft (my new immune system) can carry on and do its work fighting the lymphoma. This plan still stands, however, some extra ammunition has been added to the mix in a bid to hit the lymphoma with everything we've got. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Firstly, I'll be getting a drug called Rituximab, a drug I know very well. It has featured in every single cycle of chemotherapy I have had in the last 15 months (which adds up to more than 10 cycles now). Rituximab, which was introduced in the '90s, destroys B cells, so it is very effective in treating my cancer (diffuse large B-cell lymphoma). Alongside radiotherapy, it is hoped this drug will have a dramatic effect. The side effects of Rituximab are minimal compared to other chemo drugs, so I don't need to worry about the usual symptoms like low blood counts, loss of hair, sickness, etc.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">The other drug on the table is Interferon. This will be used to boost my new immune system, to kick it into action and get it fighting the lymphoma. At this stage, the plan is that I will receive both of these drugs in two weeks, following the completion of my radiotherapy. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">2. Tell me why I don't like Tuesdays</span></b></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I have been admitted to hospital twice in the last two weeks or so. The first time was Tuesday, January 22, when I came into Peter Mac for my Rituximab. I was feeling pretty average that morning, but this is not entirely unusual (I'm not a morning person at the best of times). When they did my observations, it was discovered I had a low-grade fever (37.5), an elevated heart rate (140bpm) and low blood pressure. Blood tests also showed my white blood cells were at rock bottom (0.1). Bang - hospital admission. I stayed for two nights, no evidence of an infection was found, and I was discharged just in time for the weekend.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">3. Aussie Day shenaningans</span></b></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I had friends visiting, so after my "release" we made a weekend of it. This involved dinner in a restaurant over the twinkling lights of Melbourne, singing our lungs out to karaoke till all hours, nibbles and games at the park and some Hottest 100 tunes (the worst countdown in the history of Hottest 100 countdowns), energetic Just Dance-athons and a cheeky road trip to Mornington on a perfect blue-sky day. With the beauty of hindsight, I now acknowledge that it was probably overload but I would do it all again in a second. </span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-q7_XA7kw0PE/UROcbCoiGrI/AAAAAAAAAhw/CUFqYlXyfoI/s1600/karaoke.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-q7_XA7kw0PE/UROcbCoiGrI/AAAAAAAAAhw/CUFqYlXyfoI/s1600/karaoke.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">If you haven't sang karaoke for five hours straight to an empty bar you haven't lived.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-qIM5sNcfv6Q/UROcV8wtnZI/AAAAAAAAAho/_D1-07Y0CCE/s1600/bogan.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-qIM5sNcfv6Q/UROcV8wtnZI/AAAAAAAAAho/_D1-07Y0CCE/s1600/bogan.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bogan? Me? Nah.</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">4. Tuesdayitis strikes again ... </span></b></div>
<div class="MsoNormal">
<span style="font-family: inherit;">The Monday followed Australia Day I was suffering burnout. I felt ill and could barely peel myself off the couch. Once again this wasn't altogether unusual. For the past couple of weeks since I had been taken off steroids, I had been suffering extreme fatigue, nausea, loss of appetite and an itchy rash, things I assumed were related to steroid withdrawal. I had dropped kilograms from my frame, weight I couldn't really afford to lose.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">But the shortness of breath I experienced on Tuesday morning was something else. I had walked from the apartment, into the lift, out of the lift and into the car, and I felt like I could barely breathe. I felt tight in my chest, it felt exactly how I would expect an asthma attack to feel. And I panicked. How can a walk of roughly 10 metres leave me feeling like I was bordering on cardiac arrest? Something wasn't right.</span></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span style="font-family: inherit;">My breathing had steadied by the time I got to Peter Mac for radiotherapy, but when I was called from the waiting room I had a dizzy spell. As I walked to the machine stars filled my vision and I had to steady myself as the radiotherapy assistant asked if I was OK. The nurse was called and after I registered a temperature of 38.1 and an elevated heart rate, I was again admitted to hospital. Unlike my previous stay, this time, I genuinely felt unwell enough to be in hospital so I accepted it.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Four nights later, the verdict was that I was suffering some lung inflammation. Scans and X-rays showed that there was no permanent damage or signs of infection in the lungs, so it was assumed that the inflammation was in its early stages and needed to be treated before it got serious. The doctors believe the cause of the inflammation was GVHD, and the radiation possibly exacerbated it. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">The good news was my chest scans showed that the tumour in my chest had shrunk, by a third of a centimetre, and considering its </span>overall size is just more than two centimetres, this is significant shrinkage considering I'd only had two weeks of treatment. HELL YEAH.</div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">5. Back on the 'roids again</span></b></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I was discharged on a hefty dose of Predisonolone (steroids), the remedy for lung inflammation. Since then it's like somebody has flicked a switch. Instead of picking at my food with disinterest, I want to eat everything in sight. I have energy, I can walk reasonable distances, my cough has disappeared and I feel like a new woman. This is great, but it always concerns me what a dramatic effect the steroids have on me, and hence the complete burnout I experience when they are taken away. But the important thing is that they are taking care of the lung inflammation and right now I feel better than I have in weeks. As a result I am getting out and about, remaining active and eating as much as possible to make the most of this steroid high. And it's kind of fun!</span></div>
<br />
<div class="MsoNormal">
<span style="font-family: inherit;">While I am in a good place right now, the past few weeks haven't been easy. It's been a tumultuous few weeks and sometimes when I'm asked "how I'm holding up" I have to hold back the tears. It's sometimes difficult to accept that after everything I've been through, I still feel like I'm going backwards. I'm tired physically and mentally and so frustrated. I hate that my life is dictated by radiotherapy and clinic appointments. I hate having awesome weekends with friends and family only to return to the crippling reality of hospitals and waiting rooms. I hate seeing all the other patients around me at Peter Mac having such a hard time (though their strength and joy amid the despair is inspiring). I hate that I am a rake, the lightest I've been in about 12 years or more. I hate that I feel I am getting physically weaker, not stronger. I hate cancer so much! </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<b><span style="font-family: inherit;">6. Upwards and onwards</span></b></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span style="font-family: inherit;">So what's next? I will continue on with the radiotherapy for the next couple of weeks. I have had 14 sessions thus far, so I am just over halfway there. I will rejoice the day I don't have to lie down on that cold bench, get poked and strapped and drawn on, locked into a suffocating mask and get lasered with radiation beams. Although I find myself falling asleep during a lot of sessions, so it's clearly not stressing me out too much. The science of radiotherapy really astounds me, I just can't believe that these radioactive beams are entering my body from all directions and sizzling a tumour embedded deep inside my body. I am always so inspired by how fast cancer treatments are moving - I think in the future radiation will be able to destroy a tumour in no time at all without affecting other delicate organs, chemotherapy will destroy cancer cells without making people sick, and doctors will be able to wire patients' own immune systems to fight the cancer themselves. This is the direction everything is heading.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Around the same time I finish the radiotherapy in two weeks, I will be taken off the steroids again and I will begin on the Rituximab and Interferon which, it is hoped, will help my new immune system to mop up the rest of the lymphoma cells and finish the job. Once again I can only hope and keep all my fingers crossed that this will happen.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">At the moment, I have two very promising signs: firstly, that my immune system is interested in fighting the cancer (evidenced by the apparent GVHD and other symptoms) and that radiotherapy or Rituximab or both, are shrinking the tumour. Stuff is working, and I can only be happy about that. </span><br />
<span style="font-family: inherit;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-a_BgupfRw7c/UROdQBNo6XI/AAAAAAAAAh4/9SVRBIk3qrw/s1600/wedding.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-a_BgupfRw7c/UROdQBNo6XI/AAAAAAAAAh4/9SVRBIk3qrw/s1600/wedding.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh did I also mention I went to a wedding? Naomi and John, I am so happy I was well enough to share your special day with you - such a perfect day!</td></tr>
</tbody></table>
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Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-72869375769742347122013-01-13T22:54:00.001+11:002013-01-13T22:54:44.001+11:00Time to turn up the radio<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="MsoNormal">
<span style="font-family: inherit;">This post is going to be part bad news, part good news, part philosophical
babble, part warts-and-all account of radiotherapy planning and some gig reviewing.
Or something. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So let’s just get the bad news right out of the way, shall we?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So last week I found out I still had spots of lymphoma across my body.
That was the initial blow. But the doctors were hoping that by weaning me off immunosuppressants,
the graft would kick in and do its job. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">But once again, this has been followed by another blow, and it’s a
game-changer. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">About four days ago I got a call from my Peter Mac/Royal Melbourne Hospital specialist nurse asking if
I could call in and see her and one of the haematologists. I didn’t have an
appointment booked that day and had only just been in the day centre the day
before so this was unusual. She said she wanted to discuss a few things, like
my cyclosporin dosage. I had a steady stream of visitors to the apartment that
morning so I scheduled a meeting for the afternoon. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">The day before at the day centre, I’d told the doctor about a sporadic
dry cough I’d had for several days, and he'd sent me in for a chest X-ray.
“They’re just being careful, I’m sure everything will be fine,” was my
attitude. Wrong. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Turns out the cough, and the fact that I can’t do the two-minute walk
from my apartment to Royal Melbourne Hospital without feeling short of breath,
are symptomatic of something bigger. The X-ray showed that the lump in my
chest is getting bigger. I’m not sure about the medical ins and outs, but
apparently it is wrapped around a nerve that is pulling on my diaphragm (which would explain the
cough and shortness of breath). <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">But the unfortunate part of it all is that the tumour is increasing to a
size that is too big for the graft to contend with. The graft v lymphoma effect
is very efficient when there is very little cancer. But when it starts to
become a mass, it becomes increasingly unlikely that the graft will work.
Basically, they need to shrink the tumour in my chest, and they need to do it
quickly. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So how will they do this? With one of the few untested weapons they have
left: radiotherapy. When will it start? As soon as next week. Yep, as I mentioned: game-changer.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">At the same time, they have taken me off the anti-rejection drug,
cyclosporin, immediately. This will heighten the chances of me getting severe
GVHD, but “that is a risk we have to take”, said the doctor. I am already showing some pretty minor, ambiguous sympGVHDtoms of GVHD (a rash, nausea, etc) right now, but it's hard to tell at this stage. </span><span style="font-family: inherit;">(It’s a small consolation in the scheme of things, but I am actually
really happy about shafting the cyclosporin because it has icky side effects,
one of which being a package deal: a moustache and a pair of sideburns. If only
lymphoma was as easy to remove as a moustache. Remind me never to complain
about a lip wax again … sigh.)</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So yeah, this is more shit news, but surprisingly I have just taken it
in my stride. I didn’t cry when the doctors told me, I just sat there, stoic.
It’s like I have built an armour around me and bad news barely even affects me
anymore. And after all I have been through, I am simply not surprised. This is some
kind of super-stubborn, bull-headed, cantankerous cancer (as some would say, a
lot like its carrier, haha). I know it is a
horrible thing to say, but it is like I am just waiting for that day the
doctors take me into their office and tell me I’ve run out of options. Because
I am, gradually, ticking each one off the list. It just feels like that is
naturally where this is all progressing. I know ‘hope’ has been an important
mantra for me but when you have been knocked down as many times as I have, it
is very hard to keep doubt at bay. It sounds flippant, but I honestly believe I
am prepared for all outcomes. I have been staring death in the face all year,
and I don’t think it’s something you ever come to terms with, but you can quell
some of the fear associated with it when you remind yourself that it happens to
every single one of us.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">If a genie in a bottle presented itself to me, there is only one thing,
first and foremost that I would want for – that all cancer in the world be
eliminated. Now I’m not sure how much power genies have, and if there are
boundaries imposed on wishes, but if the rules allow, I would also add a
‘forever’ to the end of that wish. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Then I would wish for a packet of Tim Tams that never runs out. (Just
kidding.)<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So after that morbid ramble, I’ll but a positive spin on the situation
like I always do to make things seem less shitty. What it comes down to is that
I am actually lucky that <b>I still do have
options</b>. The lymphoma has never been exposed to radiotherapy before, and
this is a real positive as it has not had a chance to build a resistance, like
it seems to have done with chemotherapy. And even though radiotherapy is going
to be a pain in the arse, I am really glad that’s the treatment I’m getting and
not further chemo. The radiotherapy, best-case scenario, might get rid of it,
and if there is anything left over, hopefully the graft will complete the job.
Yes, it would be nice if the transplant could’ve just finished the job and I
didn’t have to go through this, but with radiotherapy added to the weapons
catalogue, I also feel a sense of comfort, that not one, but two treatments
will be used together to combat this persistent disease.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So, needless to say, after this briefing at RMH I was feeling a bit
bummed. So what did I do? Hunted down a ticket to see one of my favourite
bands, Beach House, who were playing a sold-out show at the Forum that night.
Thanks to the power of the internetz, I tracked one down through Twitter and
arranged to pick it up at the venue. Ironically, the girl that sold it to me
had received mole biopsy results that day which confirmed she did not have a
melanoma (I know this because it was on her Twitter feed). I'm not sure if that's ironic twist, or just an indicator that cancer and cancer awareness is so prevalent now that we all have a story. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I went to Beach House alone, and I was happy to do it that way. I just
knew I had to do something nice for myself, escape to my former life for a
little while. This was my first gig since Golden Plains (in March last year!
This is a long dry spell for a self-confessed band/festival junkie like myself),
and it felt sooo good to pile into the Forum with all those Beach House fans
after missing out on so much in the past year. I blended right in, except for
the elephant in the room, the IV antibiotic pump I was connected to (for my CMV infection). It was
hidden in my bag which of course got searched at entry, and when I opened the
pack to show him the plastic IV bag of antibiotics, the bouncer was very
compassionate, and showed me to some special corded-off seats at the centre of
the venue so I could avoid the crowds. I thought this was a lovely gesture. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">But
me being me, could only sit through the support act, then I just had to wade
through the hipster cesspool just to get a closer listen and look at Victoria Legrand.
I stayed up the front for the whole gig, and even though my legs hurt at the
end, it was worth it. I even found myself weeping when they started playing, and fair
enough, I’d had a full-on day but the people around me must’ve thought I was a
melodramatic fool. But Beach House’s dreamy melodies move me for several
reasons. The release of last year’s album <i>Bloom</i>, easily my favourite album of
last year, coincided with my cancer relapse in May. I also received a vinyl copy of
this album in the mail as a birthday present from a dear, dear friend, and I
spent a lot of time listening to it and crying (I still have trouble holding
back tears when I listen to it now). It was a melancholy comfort during a very
dark period. Additionally, Beach House’s previous album Teen Dream was the
soundtrack to my first, amazing summer in London. So it kind of didn’t surprise
me that tears would spring to my eyes at moments during their set. I think you have to love music
as much as I do to understand this. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/hyDD-LhpgBc?feature=player_embedded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-mUzxq-Mev58/UPKXszj5N_I/AAAAAAAAAgo/AotI3j31cTg/s1600/IMG_0972.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-mUzxq-Mev58/UPKXszj5N_I/AAAAAAAAAgo/AotI3j31cTg/s1600/IMG_0972.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beach House T-shirt for meeee</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-hMaP_nR8KpY/UPKXyg4puDI/AAAAAAAAAgw/fJaWJC5WQOs/s1600/IMG_0968.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-hMaP_nR8KpY/UPKXyg4puDI/AAAAAAAAAgw/fJaWJC5WQOs/s1600/IMG_0968.JPG" height="239" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My lady crush Victoria Legrand, Beach House's lead singer</td></tr>
</tbody></table>
<span style="font-family: inherit;">Now, from music therapy to radiotherapy (how's that for a segue?).</span><br />
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">I will be getting all my radiation treatment at Peter Mac. Back in May,
I had been scheduled to receive radiation to my chest area following my autologous
stem cell transplant, when it was assumed I was in remission, until a routine
PET showed a hot spot in my chest. Radiotherapy was shelved in favour of a much
more intensive and effective option – the allogeneic stem cell transplant,
which, as we all know, is done and dusted now. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So today I found myself back in the radiotherapy planning room, talking
to the same radiotherapy oncologist I saw last May, sitting right next to the
mould of my upper body they’d also made back in May (which, thankfully, is
still a perfect fit). I have the three dots on my body, tattooed in May, that allow them
to align my body as it goes through the machine, and thankfully, no new dots
are needed. Once again, as I did in May, I lay down, snuggled my body into the
mould, while they fixed a very, very tight mask onto my face (it was all very
horror-movie-esque, like Jason from <i>Friday the 13<sup>th</sup></i> or Hannibal Lecter
from <i>Silence of the Lambs</i>). It was so tight I could barely blink, and I could only (just) talk thanks to a small hole for my lips. Apparently, the tighter the better - if it isn't cutting off circulation, then it's good. Then I lay there, half naked while they poked and
prodded, drew on me, taped me, took photos of me and got everything in the
right place (this was a bit uncomfortable, but when you walk into a hospital, you leave your dignity at the door). Radiotherapy is just really weird,
and I haven't even been introduced to the big monster machine yet.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-tuamEB5rnSg/UPKb4k_yWPI/AAAAAAAAAhQ/vTwvOVbXc0Y/s1600/43b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-tuamEB5rnSg/UPKb4k_yWPI/AAAAAAAAAhQ/vTwvOVbXc0Y/s1600/43b.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The most striking photo of a radiation mask I could find on the internet. <br />If you want to know the story behind it, go <a href="http://andrialindquistblog.com/2010/09/27/september-inspirashown-lindsay/">here</a> </td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;">So the plan is that I will start radiotherapy next Wednesday (they weren't kidding about acting quick). I will have to go in for sessions five days a
week. Overall, including preparation the sessions will take about 20 minutes, the actual radiation only several minutes. The
side effects (sore throat, mild rash, tiredness) are minor compared to
everything else I have been through. Radiotherapy will be more an inconvenience
than anything. I will be juggling radiotherapy, check-ups at RMH, and the
possible symptoms of GVHD in coming weeks and I don’t expect it to be a great
time. Radiotherapy will not conclude until late February, about two weeks past the magical day 100, the day I thought I might be able to go home (although I'm not really sure where 'home' is anymore).</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Another thing that I think about sometimes is the long-term effects all this treatment will have on my life. Stem cell transplant patients have a 2-3-fold chance of developing a secondary cancer - well I have had two of those, a bucketload of chemotherapy and now radiotherapy so I'm pretty sure my chances are now astronomical. But right now the focus is merely surviving. I'll worry about the other stuff later. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Oh yeah, so now that I’ve depressed you all beyond belief, you want to
hear the good news right? It’ll be a little anti-climactic now I’ve left it
till last but it’s made an immediate improvement to my quality of life so it
should certainly not be overlooked! I am now longer on IV antibiotics and I am
now no longer surgically attached to my ‘style-cramper’ which was that little
electronic pump I had to carry everywhere (and I mean everywhere. When I had a
shower the pump would lie outside the glass door while I, still attached, would
carry on with my personal hygiene routine). I’m so glad it’s gone, it gives me
a lot more freedom and makes me feel just a little more normal. They switched me to oral antibiotics and I am very much enjoying this new lease on life, although the fact I get breathless after the smallest activity can be debilitating.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So for now I just have to put my head down and get through the next five weeks. Do I dare to dream that in five weeks the cancer will be gone? Do I dare to dream that, soon, maybe soon I'll start putting pieces of my life back together? Whenever I ask myself these questions, I take myself back to last year, when my doctors pretty much weren't expecting me to make it to the allo-transplant because I had a chemo-resistant tumour growing out of control, and I was pretty sure that was the beginning of the end. Well I'm still here, and many didn't expect me to be. The doctors said without a hint of doubt that a cure is still the goal, and that a cure is still possible. As long as there is a cure in sight, there is hope. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Anyway in between all the crappy obligations that will be taking up my time, I would like to schedule in as much fun as humanly possible, so if you want to come over and play board games, watch movies, sit in the park, draw, laugh, learn a hobby, whatever ... you know where to find me :)</span></div>
<!--EndFragment--></div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com3tag:blogger.com,1999:blog-3856416568376282741.post-85529625500283136002013-01-06T22:05:00.001+11:002013-01-06T22:05:32.379+11:00Hope: still present; Patience: wearing thin.<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: inherit;">I've never been a fan of the new year's period. The pressure to do something amazing on what is really just another night, indecisive friends, resolutions that are rarely fulfilled, inflated prices, crowds, drunk people ... blah, who cares. Let's just start the new year already. And then when things finally tick over to the next year and it's supposed to be a new beginning, etc, everything just feels the same, except you're nursing a mammoth hangover. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">2013 so far hasn't been anything to rave about. But I still have hope it will get better.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><span style="font-family: inherit;">Despite this, I really enjoyed my new year celebrations at the Grampians at my cousin Laura’s house.
It was chilled, low-key and enjoyed with quality company among the beautiful
mountainous surrounds of western Victoria. It was everything I wanted from a
NYE. After a super tough year of treatment which had me essentially tied
to Melbourne, I really just wanted to get out of the city, and I’m so glad I
did. </span><span style="font-family: Arial Unicode MS;"><o:p></o:p></span></span><br />
<span style="font-family: "Arial Unicode MS"; mso-ansi-language: EN-GB;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-jUV0PltFSqk/UOlUXfSLaWI/AAAAAAAAAfU/5LmqKOCCBcw/s1600/IMG_5703.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-jUV0PltFSqk/UOlUXfSLaWI/AAAAAAAAAfU/5LmqKOCCBcw/s1600/IMG_5703.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hollow Mountain, you got nothing on me.</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ld4fsFuiZxs/UOlU4Bs8uEI/AAAAAAAAAfk/AYz1OWL6mUQ/s1600/IMG_5713.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-ld4fsFuiZxs/UOlU4Bs8uEI/AAAAAAAAAfk/AYz1OWL6mUQ/s1600/IMG_5713.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">While I was on top of Hollow Mountain, my phone rang. It was a call from the PET centre to confirm my appointment on January 2. Just another reminder that you can never 'fully escape' from being a cancer patient</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-fadqi51Aztw/UOlUfqMNGwI/AAAAAAAAAfc/ZT1-d7i-gYw/s1600/IMG_5808.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-fadqi51Aztw/UOlUfqMNGwI/AAAAAAAAAfc/ZT1-d7i-gYw/s1600/IMG_5808.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching the sunset on new year's eve</td></tr>
</tbody></table>
<span style="font-family: inherit;">Because January 2 was a plunge straight back into the cold, harsh waters
of reality. Back to Peter Mac, my old home, which was depressingly empty due to
the holidays, and back through the PET scanner. (I’d lost count at this point how
many scans I was up to but mum informed me it was my 11<sup>th</sup>.)</span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">I emailed my doctor to let him know the scan was done, and he was going
to call me with the results. When I hadn’t received a call from him by the
following afternoon, I was fearing the worst. I have been through enough PET
scans to know that if it’s good news, they usually try to tell me about it as soon
as possible. I felt that on the morning of January 3 I already knew what was
coming. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">So when I met up with my transplant doctor at about 2.30 that afternoon,
he was forthcoming with the scan results. “Some lymphoma has shown up on
your scan,” he said straight off the bat. “Let’s get that out of the way
first.” Deep breath. It was what I expected, but still not what I wanted to
hear. <o:p></o:p></span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><b><span style="mso-ansi-language: EN-GB;">However, this
does not mean the transplant has failed. </span></b><span style="mso-ansi-language: EN-GB;">Since the transplant, I have been
on all sorts of medications to suppress my immune system, to prevent the onset
of graft vs host disease (namely two - Prednisolone, a steroid, and cyclosporin, an anti-rejection drug). This also means that my new immune system has not
been given a chance to fully kick in, to fight the lymphoma as we hope it will.
They are hoping that as they wean me off these medications, my immune system
will jump in and attack. “It’s time to unleash the tigers,” the doctor said. Of
course there are no guarantees this will happen, but everything is set up for
that to happen. So once again, like everything, it is another waiting game to
see if my immune system has what it takes. <o:p></o:p></span></span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">The good news is that the lymphoma’s growth is not anywhere near as
significant as it has been before, with a few spots across my chest, a spot on
my arm and a faint, possible one in my pelvis. Considering that I have not had chemotherapy since late October (and low-dose chemotherapy at that), this would suggest that maybe the transplant has had some effect, and slowed the lymphoma. It's hard to know at this point. </span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">As a result, I have stopped taking the steroids and my cyclosporin dose will be gradually
reduced over three weeks. Both these medications suppress my immune system and
prevent GVHD, so I will have to be watching closely for GVHD symptoms in coming
weeks. But I find myself wanting GVHD because if the graft is attacking my
body’s good cells, that generally means it is fighting the cancer too. But GVHD, in the serious stages, can be dangerous and even life-threatening, which is why it's important to keep an eye on it. You often hear the line from doctors that you want a "little bit" of GVHD but not a lot, because it shows the graft is doing what it's supposed to. </span><br />
<span style="font-family: inherit;"> </span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">I’m pretty used to this kind of news, but I’m tired. I just wish this lymphoma would get the picture and realize I don't want it around anymore. <o:p></o:p></span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-ansi-language: EN-GB;">In other related news, I’ve also been made aware that I have a CMV
infection. CMV (</span><span lang="EN-US" style="color: #0f1316; mso-bidi-font-family: Arial;">cytomegalovirus) is a virus that 50% of people have. In healthy people, it remains “latent” – that is it stays in your body, but your immune system keeps it dormant.</span><span style="mso-ansi-language: EN-GB;"> When someone is immuno-suppressed
(like I am), CMV can be reactivated and there is a danger it can cause serious
infection. My latest blood tests show that my CMV levels are increasing, so to
get it under wraps quickly, I need IV antibiotics for at least the next two
weeks. <o:p></o:p></span></span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;">Thankfully I do not need to be admitted to hospital for this; I receive these infusions in my apartment via Hospital in the Home. Nurses visit me once a day to oversee my morning infusion, and then program my nightly
dose into a pump I have attached to me at all times. Which is the
downside. I have to carry this thing around with me and the HITH rules
stipulate that I can’t leave the apartment. Of course this happens right when I have
important social events to attend, like a hen’s night and a wedding. It's actually been too hot to spend too much time outside anyway, and I pray
that it will only take two weeks but it could take longer. Hopefully though as
I am weaned off the immunosuppression my immune system will be once again able
to keep the CMV under control. <o:p></o:p></span><br />
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-S56amGNqEMc/UOlaKTUY3II/AAAAAAAAAf8/bPGnvQ9Q4uI/s1600/IMG_0966.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-S56amGNqEMc/UOlaKTUY3II/AAAAAAAAAf8/bPGnvQ9Q4uI/s1600/IMG_0966.jpg" height="239" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My new friend "Happy" (named after one of the seven dwarves) who never leaves my side<br /> and gives me antibiotics twice a day</td></tr>
</tbody></table>
<span style="font-family: inherit;">So yeah a bit of a crummy start to the year all up, but as my doctor has
reminded me, allogeneic stem cell transplants are “a process” and I will cross
the bridges I have to cross when I get to them. I guess it just annoys me because once again, everything is clouded in uncertainty. Cancer has become so entrenched in my psyche that being lymphoma-free just feels like an elusive dream at the moment. </span></div>
<div class="MsoNormal">
<span style="font-family: inherit; mso-ansi-language: EN-GB;"><br /></span>
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<br />
<div class="MsoNormal">
<span style="font-family: inherit;">The positives are that I am feeling OK, the cancer is nowhere near as
widespread or menacing as it was and the doctors are still quite positive, so then so am I. One of the doctors from the transplant team told me while the
presence of the cancer wasn’t ideal it was “acceptable”, and the head of the
team said he wasn’t happy the cancer was there, but he wasn’t surprised either.
He said they had really only completed 10% of what the transplant set out to
do. So hope certainly is not lost. </span><span style="font-family: Arial Unicode MS;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Really there is nothing else to do but carry on like I have been, and that's what I'm going to do.</div>
<!--EndFragment--></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com1tag:blogger.com,1999:blog-3856416568376282741.post-78803497085573180762012-12-22T19:47:00.000+11:002012-12-22T19:47:26.747+11:00Oohh, we're halfway there (sang to Bon Jovi's Livin' on a Prayer)
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<br />
<div class="MsoNormal">
Some things that have happened:</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>1. I am really glad the world didn’t end yesterday.</b> I didn’t spend the
whole year fighting for my life for some stupid Mayan prophecy to take away all
my hard work. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>2. I reached day 50! </b>But instead of celebrating, I got admitted to
hospital. I just got discharged today after three nights back inside (just to
avoid my mum’s cooking and the Christmas shopping crowds. Just kidding, mum).
Nothing major, but on Wednesday I woke up feeling really unwell and I had a
temperature. I had no energy, I felt nauseous, fatigued, could barely stand up
for short periods, short of breath, just felt positively awful. I called the
oncology unit and they told me to go to emergency. Which was probably a mistake;
I was in ED for a long time doing nothing but feeling horrible and no one even
took my bloods or the routine things that doctors/nurses are supposed to do
when a cancer patient has a temperature because no one was trained in handling
a Hickman’s Line. Anyway, while examining me the doctor asked me how long I’d
had the rash on my stomach for – which took me by surprise because it was the
first time I’d noticed it. I also had it on my back. A rash on the skin can be a symptom of graft vs host
disease, so later that day they took a skin biopsy (anaesthetic and a needle injected into upper back). I got admitted into hospital, back on the bone
marrow transplant ward where I spent my three weeks in November, so a place I
know well. I didn't get the penthouse suite this time though. In the end, the good news is that after three nights, tests show no
evidence of GVHD or infection, the bad news is that I spent three nights in
hospital for really no reason at all and I am behind on my Christmas shopping.
My burnout on Wednesday was probably due to steroid withdrawal, as the doctor
had stopped my Prednisolone two days earlier. I have since been put back on it,
so they can slowly wean me off it instead of going cold turkey, and I feel 100
times better. It’s actually scary how good the steroids make me feel, I feel
like I have been floating on an artificial high for the last 50 days and I fear
crashing and burning again when the steroids stop again in about a week. But I
need to come off them – a) they suppress the immune system, and while they
prevent GVHD they can also reduce the graft v lymphoma effect, b) long-term
steroid use can have some nasty effects c) I am pretty sure they are
contributing to the fact I haven’t had a decent night’s sleep in weeks. Being
back in hospital reminded me how much I don’t want to be back there ever again.
The nurses were all surprised to see me there, since all they’d heard were
stories about me going to Devo concerts and stacking my bike (see points 3
& 5)<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>3. I saw my doctor at a Devo concert. </b>I sc</span>ored last-minute free
tickets to Day on the Green through a friend (and I mean on-the-day-last-minute). So I called my little sister Megan who was on her way to Melbourne to visit and
asked her if she wanted to drive to Rochfield winery to see The Church, Devo
and Simple Minds. The answer was in the affirmative.</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">However, mutiny struck when I was reminded that I had <i style="mso-bidi-font-style: normal;">two</i> sisters and the other one I had not
invited was a Devo fan. In the end we all agreed that all three of us could go
to the festival, and we’d all pitch in $30 for a third ticket, as they were
still on sale. Resolution reached. When dad said we could take his XR6 the day
only got better. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">A great day was had. There was a bit of rain, and at 100 years old or
however old they are now, Devo have definitely still got it … I’m not sure I
would say the same for Simple Minds, though. I think the crowd outsang the lead
singer on <i>Don’t You Forget About Me </i>but an enjoyable performance nonetheless. But a highlight was
definitely bumping into my transplant doctor. I saw him, wearing nothing but a
black T-shirt and shorts, rocking out with his lady friend. “Is that … Dr Ritchie??”
I said as I walked up to him. It took him a few moments to recognise me – he
was used to seeing me around the ward in daggy tracksuits, so it makes sense
that this tall girl in a wig, red lipstick and short shorts would have had him
stumped for a few moments. For a second I thought he was going to tell me off
(I should be taking it easy, and I should be avoiding crowds) so I kept
dropping into conversation that I had reserved seats and this whole trip was a
last-minute thing, but he seemed fine about it; I think he was more worried
that I would blow his rock pig alter-ego. Then about 20 minutes later, I bumped
into a Peter Mac nurse I knew quite well, she’d looked after me at the
haematology ward several times. She also took ages to recognise me. “You’re on
day 31 of your allograft?!” she said in disbelief. Yep, this is my life now – bumping into doctors and nurses in the 'real world'.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-xEdSSC0V3Gk/UNVlL82C6cI/AAAAAAAAAd4/U2B2n1151jY/s1600/IMG_4775.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-xEdSSC0V3Gk/UNVlL82C6cI/AAAAAAAAAd4/U2B2n1151jY/s1600/IMG_4775.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some guy wanted to take our picture because we are awesome</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-SiBbjibxmtM/UNVl6A88qrI/AAAAAAAAAeM/EZbMJfOSb9w/s1600/IMG_4872.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-SiBbjibxmtM/UNVl6A88qrI/AAAAAAAAAeM/EZbMJfOSb9w/s1600/IMG_4872.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">DEVO</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-43V11gx0EYA/UNVmdG7a3aI/AAAAAAAAAec/QR01cXWs-Xw/s1600/IMG_4987.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-43V11gx0EYA/UNVmdG7a3aI/AAAAAAAAAec/QR01cXWs-Xw/s1600/IMG_4987.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Simple Minds</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>4. I recorded my song</b>. I went into the Royal Melbourne Hospital
recording studio (yes they have one of these), had a session with Emma O’Brien
and recorded my song in one take. It was a great experience. Will upload song and share on here soon :)<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>5. I fell off my bike</b> (well my sister’s bike; maybe it was karma for
borrowing it without her permission). I had just ridden down to the Queen Vic
markets with a friend Lucy who I’d just spent a lovely weekend with (very short
ride) and was on my way back alone when my handbag got caught in the wheel and
I went over the handlebars, right on Peel Street, in the middle of a North
Melbourne bike path (yes, I was left on my own for 5 minutes and this is what
happens). I’d hit my face on the ground and my tooth had gone through my lip, I
could already feel where it was chipped. This lovely young couple stopped to
help me, and then another lady, who was an oncology nurse, who ended up driving
me to the apartment to drop off the bike and then to the hospital emergency
department; executing several illegal U-turns to do so. I wish I had’ve got her
name, she was so kind. The ED doctors cleaned me up, gave me a stitch in the
lip and prescribed me some more antibiotics (yay! More pills). I got a tetanus
injection and then I could go home. Luckily Jacqui arrived back from Meredith
to be with me in ED. I felt a bit teary after my fall and I wasn’t sure why, I
think I just felt vulnerable and I am very, very lucky that I didn’t do more
serious damage. A broken bone or any major injury would have been a major
setback. The next day my fat lip had blown out to major Lana-Del-Ray proportions,
and I was going to try and convince my doctor that I’d got into a punch-up at
the pub but he already knew the story because ED had called him. So for about a
week it all looked a bit like a collagen injection gone wrong but the grazes
are healing nicely now and I have some more scars to add to my impressive
collection. My pride was hurt more than anything else.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-mughjbKASqo/UNVrnQB9VFI/AAAAAAAAAe0/LskKKgs5CkI/s1600/IMG_0933.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-mughjbKASqo/UNVrnQB9VFI/AAAAAAAAAe0/LskKKgs5CkI/s1600/IMG_0933.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">APOCALIPS</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>6. I had an amazing weekend in Daylesford</b> with some members of my dad’s
massive extended family. We hired a stunning 18-bed mudbrick house in the bush
and spent two days eating awesome food, swapping hilarious Kris Kringle
presents, playing charades and board games and walking around the pretty town
of Daylesford. It was such a great weekend, and my first trip away from
Melbourne since the transplant, apart from a day trip to Torquay a few weekends
ago.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-y9KaFqSI7zo/UNVsLDJSBLI/AAAAAAAAAe8/x1iehiuqlkk/s1600/IMG_5291.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-y9KaFqSI7zo/UNVsLDJSBLI/AAAAAAAAAe8/x1iehiuqlkk/s1600/IMG_5291.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The cousins. Aaaaw, what a beautiful bunch of people</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b>7. This Christmas I have several things to celebrate. </b>A) Not being in hospital. B) That I am alive. C) That I have the best immediate and extended family a girl could ask for. Last year I spent Christmas in hospital and that really, really sucked. As long as I steer clear of anything with two wheels I will be staying well away from hospitals this year.</span></div>
<br />
So may your Christmas be merry, and amid the festivities of overcooked
turkey, family feuds, loud drunken rants from relatives, rubbish Christmas
presents, bad bon-bon jokes and cheap champagne, spare a thought for those who
are stuck in a hospital bed (because I was just there and there are plenty), or attending to a
person in a hospital bed, or eating Soup for One out of a can in a darkened
apartment (that was almost me in the UK one year) or just having a shittier Christmas than you. Good health is the best Christmas present you could ask for and if
you have that, feel blessed.<br />
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com2tag:blogger.com,1999:blog-3856416568376282741.post-45223002219121631922012-12-13T23:12:00.002+11:002012-12-13T23:12:53.379+11:00Looking forward, looking back<div dir="ltr" style="text-align: left;" trbidi="on">
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As the year is nearing to its end, and I've now reached my one-year anniversary of arriving back to Australia after my diagnosis, I'm going to get reflective. I mentioned in a previous post that it's far more important for me to look forward than back, but now as a really difficult year draws to an end and I can look at it with a bit more perspective. Additionally, one thing I have never actually got around to documenting on my blog in detail was my last week in London and my journey home (and besides, the world's going to end soon, and I still have many more blog posts to publish). </div>
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<br /></div>
<div class="MsoNormal">
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-mnVsr8tVIR0/UMm7EGbT6sI/AAAAAAAAAck/2WKXgCuQEZk/s1600/DSCF3637.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-mnVsr8tVIR0/UMm7EGbT6sI/AAAAAAAAAck/2WKXgCuQEZk/s1600/DSCF3637.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the beginning ...</td></tr>
</tbody></table>
I started my first round of chemotherapy in London on Friday, November 25, 2011. The whole process was very rushed - exactly two weeks after I had walked into an emergency room with some abdominal pain I found myself hooked up to a drip getting toxic drugs pumped into my veins. I don't think anything could've prepared me for what lay ahead. I remember a group of cancer patients in their headscarves and beanies sitting near me in the clinic casually discussing their stem cells and when they'd be "getting them back" and all felt a little surreal. Little did I know at that time what a big role stem cells were going to play in my own journey. This was when I entered the parallel universe of cancer treatment, but I had no idea how hard it was actually going to be. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That first round of chemo was really difficult, probably one of the worst ones I went through, physically and emotionally. The oncology nurses sent me home with a list of symptoms to look out for - if I got a fever, diarrhoea, vomiting I had to call the clinic immediately, no matter what the hour. I spent the first few days after chemo feeling relatively OK but I was a bit on edge about everything; I just didn't know what to expect.</div>
<div class="MsoNormal">
<br /></div>
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A few days into chemo I got my first intrathecal, a chemotherapy injection into my spine. The chemo travels through the spinal fluid and to my brain, to protect it from the cancer. I had to curl up in a ball while the doctor stuck needles into my spine. The worst part is the stinging of the anaesthetic they inject first that numbs the area before they inject the chemo. Intrathecals are also annoying because you have to lie flat in bed for <i>at least</i> an hour after it's done to prevent headaches. The recommended time is actually four hours but there's no way anyone was going to keep me in bed that long. I have now had six intrathecals all up and hated them all, they were just time-consuming and annoying. One of them, I think it was during my fourth round of chemo, gave me a lot of problems - ringing in my ears, heavy limbs and neck pain, it was just terrible. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the following Monday, I said goodbye to mum who had to take a very difficult flight home, alone, to attend my brother Sam's graduation in Australia. The next day after his graduation, Sam was going to take a flight to London, spend a week with me, then fly with me home. It meant I was going to have about three or four days in London on my own, and all I can say is thank God for Matt who had taken several days off work because it was around then that things turned pretty grim. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Wednesday and Thursday I hit rock bottom. Thursday I couldn't keep breakfast down and ended up retching it up in the shower. I was pale and weak and kept having to go lie down. "It's like a really bad hangover," I said, "without the fun part." On top of this I was emotional wreck, which was probably a combination of the sickness making me feel so frustrated and helpless and my hormones wreaking havoc because of the fertility treatment I was on. Also, having to say goodbye to Matt was weighing really heavily on me. There were lots of tears at this point, lots of emotion. </div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Friday I felt a bit better, and that night Matt and I went for a walk down Green Lanes with the housemates' dog. I realised this had been the first time I'd been outside since Tuesday. </span>It was nice to get some ‘fresh’ air though not sure there’s much fresh about the air in Harringay, except for the fact it’s cold.</div>
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<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Saturday was horrible, I was back to feeling awful again. Weak, nauseous, emotional. Matt went home because he hadn't even changed his clothes in three days. </span>I’d really enjoyed the time we’d got to spend together, even if I was in a bad state for a lot of it. We still managed to share some laughs, and tears, and I was impressed by his cooking skills. He went home after we shared lots of hugs and tears.</div>
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<br /></div>
<div class="MsoNormal">
Sam arrived from Heathrow that afternoon, and my housemate picked him up in his car from Manor House station. I was happy to see him, but too fatigued and sick to really show it. It was a pretty mellow weekend, I couldn't do much but lay around.<br />
<br /></div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-9LgN2QoSaBI/UMm8gr2Z8eI/AAAAAAAAAcs/b8Eagk2w8kg/s1600/_MG_3192.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-9LgN2QoSaBI/UMm8gr2Z8eI/AAAAAAAAAcs/b8Eagk2w8kg/s1600/_MG_3192.jpg" height="320" width="213" /></a></div>
<br /></div>
<div class="MsoNormal">
On Monday, I had to head into the UCLH clinic for my routine blood tests. I woke up feeling terrible once again. I was pale, I looked and felt horrible. I spent the car ride to the clinic with my window down, wanting to throw up. The tests showed that my neutrophils were just sitting under 0.5, which meant I was neutropenic and at risk of infection. The lymphoma nurse sent me home with three days' worth of GSCF injections to boost my white cells. We got a cab back to Harringay, and I when I stepped out of the cab I threw up, right there on the street. I had to shut myself in my (tiny) room and avoid my housemates as one of them definitely had a cold of some description. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A couple of days later I was feeling much better. My white blood cells had soared. A chest X-ray showed the tumour in my chest had shrunk significantly. This was the first time my lymphoma had been exposed to chemotherapy and it had really knocked it around. The doctor was happy for me to fly home. It felt awesome, but so scary at the same time. It was really happening, I was leaving London. Amazingly I managed to pack my whole life back into my backpack and a couple of extra bags - I had really accrued very little in my 18-month stay in the UK.<br />
<br />
The care I got in the UK via the UCLH was exceptional. My lymphoma nurse Barbara was an absolute gem and really went above and beyond to ensure I was OK. She gave me a lot of her time and to this day we are still in contact. </div>
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<div class="separator" style="clear: both; text-align: left;">
<br /></div>
It was a cold, cold day I left London. It was Saturday, December 10, 2011. Saying goodbye was difficult. On the Friday night I'd had a wonderful farewell with friends in Stoke Newington until 3am. Still a rather subdued affair compared to what it would have been had I left in different circumstances. But I was happy to just relax and share some laughs with good friends. The perfect way to say goodbye.</div>
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Saying goodbye to Matt was really, really hard. We were on our way back from dinner in Islington and he got off the 341 bus at Church Street and walked away, down the dark street and I didn't know when I was going to see him again. I was already crying at Newington Green, and I cried all the way home. Sam and I were running a bit late to get our cab to Heathrow, and this was not helped by the fact that there was a car, engulfed in flames, on Green Lanes, which had stopped all the traffic. We got off the bus and walked home, as a crowd of people just stared at this burning car. A rather odd sight and end to my life in London. We grabbed all our luggage and piled into a cab. As I took my last bag, left my keys on the shelf and went to close the door, I hesitated for a moment, took one last look at what had been my crazy, but warm home for the past year. I was certainly going to miss it, and the people that lived there.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-DbxNjsKs5IY/UMm84cd6PTI/AAAAAAAAAc4/C4f6caRpBSw/s1600/_MG_3260.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-DbxNjsKs5IY/UMm84cd6PTI/AAAAAAAAAc4/C4f6caRpBSw/s1600/_MG_3260.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bye London, I shall miss you</td></tr>
</tbody></table>
The roads to Heathrow were jam-packed with traffic and the cab was barely moving. I was having some major anxiety that we were going to miss our flight. After all these delays, re-booking of flights, all this drama, we were going to miss that plane home because of traffic? The cabbie ended up veering off the main motorway and taking a "short cut" to the airport along all these backroads. I have to say, I had my doubts but I have to hand it to him for managing to get us there on time. </div>
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On arrival to Heathrow, we were greeted by a Qantas staff member who told
us we had access to the British Airways Galleries Lounge and that we had been
upgraded to business class. This was a big surprise to us; we hadn’t expected this kind of treatment. I know that one friend emailed the Qantas executives explaining my situation and my brother had also called them to see if maybe we could avoid having to wait in crowded areas or maybe get more comfortable seats on the plane. But being upgraded to business class was pretty awesome. We had our own little cubicles and seats that went all the way down to horizontal, which even had a massage option (which was actually rather uncomfortable). We had ample leg and storage room, decent food, private TVs with top-quality headphones, bubbly on lift-off - we even got complimentary pyjamas and an amenities kit. The staff were falling over themselves to make us as comfortable as possible. It was pretty amazing and I'm pretty sure that's the first and only time I will ever fly business class because I have looked up the prices and it does not come cheap. I managed to sleep a lot of the way home and it just made our flight so much more bearable. Really have to hand it to Qantas; they made a difficult flight a lot easier.</div>
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<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-v9Ko6jkW4Tg/UMm9SWVzKtI/AAAAAAAAAdA/Cbu5T6xaUSg/s1600/_MG_3302.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-v9Ko6jkW4Tg/UMm9SWVzKtI/AAAAAAAAAdA/Cbu5T6xaUSg/s1600/_MG_3302.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Hippo Jo in transit</td></tr>
</tbody></table>
I can't even describe the feeling of coming home ... it was like a dream. Seeing my family at the airport, being welcomed by Melbourne's wide streets and breezy sunshine; it all felt so strange but familiar. Another amazing surprise when I got home to my parents' place was my old bedroom. In the weeks leading up to my arrival, my siblings, and uncle and cousins had worked tirelessly to repaint, recarpet, refurnish and decorate my old bedroom which looked absolutely fantastic. Everyone had also printed out a collection of photos which they'd arranged on the wall. A lot of time and effort went into it and I was really touched. What a homecoming.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-sGQETUeFh5Y/UMm9rI670wI/AAAAAAAAAdI/J7xdjkMuaww/s1600/_MG_3330.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-sGQETUeFh5Y/UMm9rI670wI/AAAAAAAAAdI/J7xdjkMuaww/s1600/_MG_3330.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me, having just arrived home, and my photo wall</td></tr>
</tbody></table>
<br />
And the rest is history. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the past year and a bit:</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
</div>
<ul style="text-align: left;">
<li>I have had bucketloads of chemo. Three rounds
of R-CHOP, 3 rounds of Hyper-CVAD, 6 intrathecals (chemo injected into my
spine), 2.5 rounds of Gem-Vin, one round of high-dose chemotherapy (cytarabine, etoposide, carmustine, cyclophosphamide) one round
of low-dose chemotherapy (rydarabine and melphalan). This also doesn't include the countless number of oral meds I have had to take daily all year.</li>
<li>I have had an autologous stem cell transplant (April) in which my own stem cells were collected and returned to my bone marrow after high-dose chemo.</li>
<li>I have had an allogeneic stem cell transplant (December) in which my sister's stem cells were collected and delivered to my bone marrow after low-dose chemotherapy. </li>
<li>Had five infections during chemotherapy, all of which I was hospitalised for. </li>
<li>If you added up all the days I spent in hospital, including those as an outpatient, I reckon they'd take up half the year. Easily. Maybe more.</li>
<li>My hair has fallen out four times. </li>
<li>I have seen some wonderful places with some wonderful people. I have travelled to Perth/Margaret River, Brisbane, Sydney three times, Wollongong, the Hunter Valley, the Grampians, Meredith (Golden Plains), Falls Creek, Daylesford/Hepburn Springs, the Great Ocean Road, Wilson's Promontory and the NSW Far South Coast (Merimbula/Eden). </li>
<li>I climbed a really big tree, went snowboarding, attended a couple of festivals and wrote and recorded a song.</li>
</ul>
And throughout everything my family, especially my mum, have been right by my side, have been my rock in times of darkness. In this respect I have been very lucky. Actually, I'm pretty damn lucky to even be here today, when it comes down to it, and I'm thankful for each day.<br />
<!--EndFragment--></div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-10481232137276217972012-11-30T18:56:00.000+11:002012-11-30T18:56:27.071+11:00I can see clearly now ...<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Good evening, Day #31. Weeks ago the days were slowly trickling by, and
Day 100 felt so far, far away. Now I am already a third of the way, and
“kicking goals” to quote my doctor. If I wasn’t swallowing 20 pills a day,
wearing wigs and scarves to cover my bald head and spending enough time in
Royal Melbourne Hospital to know many people by name now, it would just feel like
a regular summer. Health-wise I’m as strong as I can be – my organs are all
functioning normally, I have no debilitating symptoms and even my energy levels
are pretty good – I am far from housebound and enjoying the many things
that North Melbourne and surrounding areas have to offer. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I am still required to visit the Royal Melbourne day centre three times
a week for check-ups. Among the familiar faces are a diverse range of
haematology cancer patients; some young but most of them old; many of them are
post-transplant patients like me; some smiling, some sad; some with chemotherapy feeding into their veins, some with fluids, some falling asleep in their
chairs; most with companions like partners or mothers. I am well-acquainted
with day centres, having frequented them at London, Latrobe Valley, Peter Mac
and now RMH for my various treatments. Sometimes they would be depressing places – you are often
surrounded by some very sick people - and I would get this mild anxiety about
having to sit in “the chair (morbidly, in my head I would associate it with an
electric chair). Even though it is a place of healing, you are also having
poisons injected into your body. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I have to say the RMH day centre is different though; it’s not such a
bad place to be. I go there enough that everyone is familiar, and the staff are
so upbeat; smiles and jokes abound. Quite often it’s a fleeting visit: the
nurse performs the general observations, runs off a copy of my blood counts,
then I have a brief chat with the doctor about anything that might be bothering
me and I go on my merry way. Sometimes I have stay a couple of hours for an intravenous top-up of magnesium (the anti-rejection drug cyclosporin chews up my magnesium
levels) or fluids. Soon though, these visits will be cut to twice a week which is a
good sign. Next week I also get to lower my daily steroid dose which I am
looking forward to because it’s hard to get a good night’s sleep on 35mg of
Prednisolone a day. The steroids keep graft versus host disease in check (which
I have had no symptoms of as yet) so it will be interesting to see what happens
there.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">It will still be some time until I find out whether the whole point of
the transplant has been achieved and whether my new immune system, “the graft”
has attacked the lymphoma cells. Building a new immune system is no small task and at the moment it’s barely clicked into first gear. It won’t be
firing on all cylinders until another six months, and until then I still have
to be careful in terms of infections (I can actually get measles, mumps and all that nasty stuff that most people are immunised against). I have a "baby immune system" as one nurse described it. My next PET scan will be around Day #60, some time after
Christmas. Again this is too early to tell whether the graft vs lymphoma effect
has taken place, it will simply be a surveillance exercise. All I can do for
now is celebrate that I am feeling well and enjoy the glorious Melbourne summer
and festive season that is unravelling around me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-bjiqZMGvMF0/ULhgtNNoUtI/AAAAAAAAAb4/L9lbXSZiFZU/s1600/nightmarket.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-bjiqZMGvMF0/ULhgtNNoUtI/AAAAAAAAAb4/L9lbXSZiFZU/s1600/nightmarket.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Queen Victoria Night Markets ... I love Melbourne in summer</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">And I can’t believe how at peace I feel. 2012 has by no means been an
easy year which has taken to me some of the darkest places of my life. But
right now I feel I have come so far and grown into the person that I want to
be. I just have to wait for my body to catch up and heal to complete the
picture. It's been a year since I returned from London and I still find myself in limbo;
unable to get back to work, get back on my feet and regain my independence and
that has been very frustrating. Reconnecting with friends after 18 months
abroad and with an illness has been a challenge as well. But at the same time I
have had plenty of time to reflect, think about the things that are important
to me and what this thing called life is all about, and I feel like I’m in a
good place right now, moreso than a lot of physically healthy people.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I feel there are so many positive things happening lately too. While in
North Melbourne I have been able to visit fellow Traralgonites Chrissie and Wes
and their three-year-old son Aston who has undergone a bone marrow transplant
at the Royal Children’s Hospital. It has been a long, tough nine-month journey
for Aston who amazingly recovered from stage 4 GVHD and a stint in
intensive care, and now he finally gets to go home to Traralgon for good. Seeing
Aston doing so well and the way his parents rally around him has been a major boost for
me. Around the same time, dear friends of mine in Merimbula have reached a
milestone: their two-year-old daughter Pearl is now four years on from her leukaemia
diagnosis, has had two years chemo-free and is strong and well. Jimmy Stynes
said in his book, “Those looking for perspective will find it in bucketloads
when spending time with kids with cancer.” Their resilience in the face of
everything they’ve been through is just inspiring and life-affirming. It also shows that even when
things seem bleak and neverending, there is always hope.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Today was also a great day because I did something I’ve never done
before: I wrote a song. At RMH there is a wonderful music therapist called Emma
O’Brien who visited me while I was on the ward for some guitar playing and
singing. While I was “inside” I put some poetry together, and today I visited
her at the recording studio (yes RMH has a recording studio!), we added some
chords to it and we’re planning on doing an initial recording next week. It’s a
great song and I’m excited about it. Rock stardom here I come! <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ezNL3Pc_0xo/ULhjZUR5H0I/AAAAAAAAAcM/XQA_D8eKfC8/s1600/emma.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-ezNL3Pc_0xo/ULhjZUR5H0I/AAAAAAAAAcM/XQA_D8eKfC8/s1600/emma.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Emma O'Brien featured in the November 30 edition of The Age's Melbourne Magazine</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now a funny story to cap things off. Last weekend I went out for dinner in
Port Melbourne with my brother and some friends. While I was sitting staring
out the window at the beach views, I noticed that my vision was crystal clear.
I’m mildly short-sighted and need the help of contacts or glasses to see for
long distances. But wait, what was this? I could see ships clear as day on the hazy
horizon, and I could read the specials board from the other side of the room.
Had my vision magically corrected itself? Had Megan’s stem cell superpowers
given me perfect vision? I was baffled by this until I got home and upon
inspection of both my eyes, I realized that I was still wearing my daily
contact lenses that I had forgotten to take out the night before, when I had flopped into bed exhausted. These lenses had withstood a night’s sleep and a shower, and once they were finally removed, alas, I
was blind as before. Classic blonde moment (no I can’t blame it on “chemo
brain”, I was always like this). Ah well, I still hang on to the hope that
Megan’s stem cells will pass on some kind of superpower, her mad guitar skillz
maybe? Her unbeatable <i>Just Dance</i> moves?</div>
<span style="font-size: 12pt;"><span class="Apple-style-span" style="font-family: inherit;"><span style="font-size: 12pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span>
So that’s November. A month in which I reached a year since my diagnosis,
a month in which I recovered from my second stem cell transplant in a year, a
month in which I wrote my musical opus, a month in which the sun shone on
Melbourne and reminded me why it is still one of my favourite cities on earth. It’s
all good folks, it’s all good. </span></span><!--EndFragment-->
</div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com1tag:blogger.com,1999:blog-3856416568376282741.post-12639578923722869822012-11-16T15:19:00.002+11:002012-11-16T15:21:59.849+11:00Freedom and fist pumps<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Being able to relax on my North Melbourne balcony in the sunshine and
gentle breeze, watching the world go by. Relaxing on the couch watching TV with
the fam. Enjoying a home-cooked meal around the table. These are all the things
I promise I will not take for granted anymore. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">If the purpose of me going through this whole cancer ordeal is to
appreciate those small things, then I can say that mission is accomplished.
I will never take good health for granted again, and frankly, I am just happy to be alive. (Just to reiterate, I don’t really think there is a
‘purpose’ for this ordeal. I think it just happened because one of my cells
happened to mutate and multiply. To me, it’s as simple and unfortunate as that.)<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I was in hospital, all up, for about 19 days. I was barely allowed to
leave my little glass cocoon, which was room 8 on the 5<sup>th</sup> floor
(though, that said I did have the nicest view and biggest room on the ward –
the ‘penthouse suite’ according to the nurses). For most of this time, I was sitting there just waiting fort my neutrophils, which had
been sitting firmly at zero for days and days, to increase so I could get out
of there. In the meantime I wanted to avoid any nasty bug that might come my way. There were a couple of days that I was pacing the room so furiously
that mum was going to ask the doctor to prescribe me valium. I probably did
need it too. It’s quite unusual for me to get anxiety but there were a few days
that I felt it heavy on my heart. There were also a couple of mornings where I
found myself crying into my porridge (which would add some flavour at least)
for no fixed reason. I wasn’t worried about the transplant not working, I was
more worried about the days ahead, and how I was going to manage them with even
a shred of sanity. I was burdened by the monumental task ahead of me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">So what did I do with my time? I read, though my concentration would
fluctuate from day to day. I watched shows like <i>30 Rock</i> and movies like
<i>Clueless</i>. I wrote poetry. I kept a diary. I played on my mum’s iPad. I played
SongPop on my iPhone. I tried to keep up with the news, but as with my
concentration, my interest in current affairs would wane some days. I spoke to
people. And this is where my star visitors come into play – as well as
brightening my day they also helped to break it up, as did the letters and
notes of support (as if in some kind of poetic harmony, I ran out of letters to
read right before my discharge from hospital). <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-VTrqxs-Sz54/UKW5OxuMZJI/AAAAAAAAAbI/V1lQUEuZWTk/s1600/sunset.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-VTrqxs-Sz54/UKW5OxuMZJI/AAAAAAAAAbI/V1lQUEuZWTk/s1600/sunset.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunset from my window</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I was one of the lucky ones as I didn’t suffer much sickness throughout
my stay. A really ugly infection broke out on my face, kinda like an infected
pimple, but it didn’t cause me much grief apart from making me look monstrous.
From Day +8 to discharge I had a sore throat, but I still managed to eat all
the way through and thankfully I never had to be fed nutrition through a drip. I had some loss of appetite and drowsiness, but</span> the flatness, lack of fresh air and boredom were worse. I
can’t even say the first few weeks of my allograft were much worse than my
autograft. It was simply that the process was longer, and different.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Other things that helped were regular walks up and down the ward (which
is about 50 metres long, no kidding) and getting decent sleep every night,
which surprisingly I managed. Most of the time I sleep like a baby in hospital. Despite being roused from sleep about five times a night for observations,
medications and blood tests, I always fall straight back to sleep and doze
until the doctors usually do their rounds at 8-8.30.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Day +12, a Saturday and Stakes Day in Melbourne, was a busy day. I’d been
to Flemington racecourse in the Melbourne sunshine. I’d pashed several guys
(and even girls), won money on the horses, swilled champagne, took to the DJ
decks to spin a few records, hell I even busked on the street. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Was this some kind of crazed rampage day leave scenario? No. My
hilarious girl friends took a cardboard cut-out of my
head along with them to Stakes Day. What ensued was a sequence of hilarious
photos to my phone of my head in a range of compromising situations. It made my
day – and apparently a few other people’s too! Funny, because on Saturday I was
craving McDonald’s (which apparently I visited at some ungodly hour) and Monday
morning I threw up for the first time since I’d been in hospital, which made me
think that maybe I had a sympathy hangover, or my cardboard head had been a
voodoo doll. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">It was a lovely gesture which put a smile on my face for days and
reminded me what awesome friends I have.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-HQVRsk8UV6c/UKW3plANkaI/AAAAAAAAAao/j8crzm0O5ZQ/s1600/dj.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-HQVRsk8UV6c/UKW3plANkaI/AAAAAAAAAao/j8crzm0O5ZQ/s1600/dj.jpg" height="238" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Proof that I can DJ</td></tr>
</tbody></table>
<div class="MsoNormal">
Saturday also marked a year since my (unofficial) diagnosis. 11.11.11, a day that will be etched in my memory - the day I took myself to a London hospital, plagued by a cough, abdominal pain and
sickness, only to be told several hours after a chest X-ray and CT scan that I
had cancer. But I tried not to think too
much about it. Right now it is so much more important for me to look forward
and embrace the future, rather than dwell on the past, and how far I have or haven't come. So I shrugged it off as another
day.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I also missed seeing my favourite band at Harvest Festival that day but
that means little to me now. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">My debaucherous Day + 12 must’ve been just what the doc ordered, because
I woke up on Day +13 to a neutrophil count of 0.1. Could this be the beginning
of the great white cell ascension? I wouldn’t know until tomorrow – if my
neutrophils continued to rise, then they would call it ‘engraftment’ (which
means Megan’s cells have taken to my body, and are now releasing those vital
white blood cells). But it wasn’t common for neutrophils to drop as quickly as
they rose again during an allograft. Day +14, bang. Neutrophils 0.3. Engraftment
was well and truly engaged. I was so, so close to getting out. <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-GWdx3T1Q_QE/UKW6uFgHodI/AAAAAAAAAbQ/whSHz51f0qY/s1600/engraftment.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-GWdx3T1Q_QE/UKW6uFgHodI/AAAAAAAAAbQ/whSHz51f0qY/s1600/engraftment.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Scientific diagram explaining engraftment</td></tr>
</tbody></table>
<div class="MsoNormal">
My nurse let it slip that they might let me out on overnight leave the
next day if my neutrophils kept rising, so I got rather excited about that. I
woke to a happy nurse coming into my room, “You’re going home!” Neutrophils 0.5
– I was no longer neutropenic. A fist pump and emphatic “YES!” came as reply.
Then the doctors came round and said I could get ‘day leave’ but had to stay
overnight in the hospital, and my discharge was likely to be Saturday, so my
excitement fizzled. Luckily I had the right people on side, and the nurse in
charge did some sweet-talking so I was allowed out on overnight leave instead. I
managed to ‘check out’ some time that afternoon, and by then I was too tired to
jump up and down with joy, but when I took those first few steps outside and
gulps of fresh air, that’s what was happening inside.</div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I had to go back to the hospital this morning, but they are happy with
my progress and have officially discharged me. The nurses and doctors are like
beaming proud parents, and telling me “Make sure you come back and visit.”
Surprisingly I didn’t cry, even though the Royal Melbourne Hospital nurses have been absolutely
<i>amazing</i>. Maybe the lack of tears was because I know that I still have to come
back to the hospital’s day centre for tri-weekly check-ups, so it’s not
necessarily an emotional goodbye for me just yet. </span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><o:p></o:p></span><a href="http://1.bp.blogspot.com/-vJNi5BIAPrE/UKW4qqFf8EI/AAAAAAAAAaw/iQ7E59kIHRw/s1600/Hippojo1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-vJNi5BIAPrE/UKW4qqFf8EI/AAAAAAAAAaw/iQ7E59kIHRw/s1600/Hippojo1.jpg" height="320" width="320" /></a></div>
<br />
<div class="MsoNormal">
My only obstacle at the moment is some niggling morning sickness (nooo,
not ‘that’ kind of morning sickness). I’m not sure why it’s popped up so far
along in my treatment (as it cannot be chemo-related), but theatrically, I have
to run for a toilet or sick bag (now carried in my handbag, it’s the cancer
patient’s lipstick) some time before or after breakfast. Not the best start to
the day, hence I hope it sorts itself out in the next few days or so.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">They also discharged me with enough pills to sink a small ship.
Anti-sickness meds, three types of antibiotics, magnesium supplements, pills
for my stomach, pills for my liver, steroids (to prevent graft vs host disease)
and the very important anti-rejection drugs, which smell bad and are the
biggest pills I’ve ever seen. I can now say that to deal with this daily
onslaught of meds I am now the proud owner of one of those pill boxes they give
out at nursing homes, with four containers for each day marked ‘Morning’,
‘Noon’, ‘Evening’ and ‘Bedtime’. This is what my life has become! I have always
said though, this experience has set me up very well for old age, and the pill
box reinforces that. (Next thing is the granny trolley). <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-Cs6-CMj4h8Y/UKW5M_LCCMI/AAAAAAAAAbA/b1N1wxRSuYQ/s1600/IMG_0872.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-Cs6-CMj4h8Y/UKW5M_LCCMI/AAAAAAAAAbA/b1N1wxRSuYQ/s1600/IMG_0872.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pill popper</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-Q3rnEXbUik0/UKW99sXqswI/AAAAAAAAAbk/W1DbtA6T35s/s1600/grannytrolley.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-Q3rnEXbUik0/UKW99sXqswI/AAAAAAAAAbk/W1DbtA6T35s/s1600/grannytrolley.gif" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My kinda granny trolley</td></tr>
</tbody></table>
<div class="MsoNormal">
It’s been a testing time, and the true test hasn't really happened yet. I still have 85 days to go till I'm in the clear, till I can have some peace of mind, and I know my next PET scan is going to bring its usual dose of anxiety. Some days in hospital were so long, gloomy and boring I
thought the end would never come. I feel after all this, I will have the patience of a
saint. I still have a long road ahead of me; I will be
visiting RMH’s day centre three times a week and I still face the dangers of
infections and graft vs host disease, both of which can be life-threatening if
left to run rampant. I know those tri-weekly appointments are going to get old
and that there are still a few bumps looming on the remaining stretch of road.
But I’m out of hospital and that’s the first positive step.</div>
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Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-81776477187343467562012-11-09T16:17:00.000+11:002012-11-09T16:17:32.489+11:00Letter from the inside: day +10<div dir="ltr" style="text-align: left;" trbidi="on">
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<span class="Apple-style-span" style="font-family: 'Adobe Caslon Pro';">So it’s day +10 and like every drip of saline, the days are slowly
trickling by. My neutrophil count has been zero for about eight days now, and
unable to leave the ward, I can certainly feel cabin fever coming on. This treatment is testing my patience to every inch of my being. I am
hoping that white blood cells, born from Megan’s stem cells, will pop up in my
bloodstream soon. But for now it is just another excruciating waiting game. I should just thank my lucky stars that I am feeling pretty good at this stage, but as the nurses say "you are either sick or bored". I'm bored.</span></div>
<div class="MsoNormal">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">For now, I am working towards three goals:<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB; mso-bidi-font-family: "Adobe Caslon Pro"; mso-fareast-font-family: "Adobe Caslon Pro";"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">Get out of hospital (hopefully within the next week)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB; mso-bidi-font-family: "Adobe Caslon Pro"; mso-fareast-font-family: "Adobe Caslon Pro";"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">Get a clear PET scan (in about a month and a half)<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB; mso-bidi-font-family: "Adobe Caslon Pro"; mso-fareast-font-family: "Adobe Caslon Pro";"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">Get to day +100 with few problems (90 days from now)</span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span class="Apple-style-span" style="font-family: 'Adobe Caslon Pro';">So, from a strictly medical point of view, I’m doing pretty well. I started to feel really under the weather at about day +8, when my throat pain increased and I felt weary and drowsy. That night, of the day Obama won his second term of the American presidency, I spiked a temperature. About 90% of patients undergoing my treatment end up with a temperature, so this was no surprise. Additionally a skin infection has flared up on my right cheek, so at the moment I look rather monstrous. I have been on IV antibiotics for this for several days, and it looks like it is being kept under control.</span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
</div>
<div class="MsoNormal" style="font-family: Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span style="font-family: 'Adobe Caslon Pro';">This is much harder than my autograft, simply because things take longer. I was discharged on day +11 of my autograft, and I will no doubt still be here with a zero neutrophil count on day +11 of my allograft. I haven’t even breathed fresh air for coming on two weeks now. There is every chance I could make it to day +20 without my counts increasing, so I have to be patient.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span style="font-family: 'Adobe Caslon Pro';"><br /></span></div>
<div class="MsoNormal" style="font-family: Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span style="font-family: 'Adobe Caslon Pro';">For now I am feeling OK. My throat pain has waned a little bit and they haven’t had to put me on any IV feeding aids, so I’m kicking goals in that department. I can still manage walks around the ward, and still have quite a bit of energy for someone who’s been through the wringer. Got to be positive signs.</span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">As some of
you may have noticed, I have resorted to drawing motivational drawings on the
whiteboard to keep me going. The box of letters, a gift from my friends from
high school, has also helped me remain positive amid the day-to-day gloom. I’ve
committed to reading one a day and the photos and cards have put a smile on my
face, as well as brightening up an otherwise drab hospital room. Most of all
they have helped me maintain a positive outlook – even the notes and cards from
people I’ve had little to do with over the past 13 years (showing my age now) –
it means a lot that they wanted to drop in a note to wish me well. I still have
a few to go – but thanks everybody who contributed, it was such a thoughtful
gift. <o:p></o:p></span></div>
<div class="MsoNormal">
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<a href="http://2.bp.blogspot.com/-vtrHQwxkXJ0/UJyM_yTtXzI/AAAAAAAAAaA/9vssSQoJE3M/s1600/IMG_0855.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-vtrHQwxkXJ0/UJyM_yTtXzI/AAAAAAAAAaA/9vssSQoJE3M/s1600/IMG_0855.JPG" height="239" width="320" /></a></div>
<br />
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<a href="http://2.bp.blogspot.com/-86WUatogMiY/UJyOjAY7fZI/AAAAAAAAAaI/_dcG8p_hY44/s1600/IMG_0856.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-86WUatogMiY/UJyOjAY7fZI/AAAAAAAAAaI/_dcG8p_hY44/s1600/IMG_0856.jpg" height="320" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-eaao5UfpYu8/UJyQCGDinYI/AAAAAAAAAaQ/E1CbpVKc5h0/s1600/IMG_0857.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-eaao5UfpYu8/UJyQCGDinYI/AAAAAAAAAaQ/E1CbpVKc5h0/s1600/IMG_0857.JPG" height="239" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;"><br /></span></div>
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<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Adobe Caslon Pro"; mso-ansi-language: EN-GB;">Another thing that’s given me a bit of a lift is the completion of Jim
Stynes’ book, My Journey. Such an amazing and inspirational story; what a man,
to face such adversity with such positivity and courage. There is so much I
want to quote from this book, but I’ll save that for another time. I recommend
this book to anyone, but especially to those who have had experiences with cancer – there
will be so much to relate to, and I think it’s a wonderful thing to know you’re
not alone. That’s what Jimmy wanted to achieve by going so public with his
journey, and I am thankful. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: 'Adobe Caslon Pro';">What else? I won $150 by picking a winner (Green Moon) on the Melbourne
Cup, which I watched from the comfort of my hospital room. That and Obama’s
win, have given me a boost. These are
good omens, they just have to be. </span></div>
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Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-75763705844591172622012-10-31T19:28:00.000+11:002012-10-31T19:28:02.628+11:00Sister stem cell superpower!<div dir="ltr" style="text-align: left;" trbidi="on">
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Tuesday, October 30 was stem cell collection and donation day, also known as "day zero" and what a beautiful, sunny day it was. The sun was shining, the birds were chirping, Melbourne was hustling and heaving under a deep blue sky … </div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-x85Rq5757h0/UJDbhEkRBgI/AAAAAAAAAZc/vkeV9a8g46g/s1600/IMG_0830.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-x85Rq5757h0/UJDbhEkRBgI/AAAAAAAAAZc/vkeV9a8g46g/s1600/IMG_0830.jpg" height="208" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beautiful day for a stem cell transplant (view from my window)</td></tr>
</tbody></table>
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Megan came into the Royal Melbourne to begin collection fresh
and early at 9am. For about 5-6 days prior to collection, Megan had been given
twice-daily injections of a drug called GSCF to boost her stem cell production.
This was more an inconvenience for her than anything, but GCSF can also cause symptoms like bone
pain, which luckily Megan didn’t experience much of. Since my counts were still good
on stem cell day, I was able to trundle down with my "pole" from the BMT ward
to apheresis where Megan was hooked up to the machine (much similar to the
machine I was hooked up to for my autograft, but smaller and more 70s looking)
and chat to her while those stem cells were filed away. Megan’s blood was being
divided into three bags, one of plasma, one of the “dregs” and one of the
precious stem cells, which resembled a burgundy-coloured liquid in the bag.</div>
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<br /></div>
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<a href="http://2.bp.blogspot.com/-SNeJo32-QFo/UJDbMQuUv-I/AAAAAAAAAZA/OIpzVbVpEMs/s1600/hippojo2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-SNeJo32-QFo/UJDbMQuUv-I/AAAAAAAAAZA/OIpzVbVpEMs/s1600/hippojo2.JPG" height="239" width="320" /></a></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-9fpjlZneIrQ/UJDbTR4XYrI/AAAAAAAAAZI/9X9IrIxtiRw/s1600/hippojo3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-9fpjlZneIrQ/UJDbTR4XYrI/AAAAAAAAAZI/9X9IrIxtiRw/s1600/hippojo3.JPG" height="239" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Phase 1: harvesting ...</td></tr>
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<span style="mso-ansi-language: EN-GB;"></span></div>
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<span style="mso-ansi-language: EN-GB;">Megan had to remain
attached to this machine for a good three to four hours to ensure they got a
decent collection. At about 1.30, they were done, and a cell count was
conducted. They had collected about 10 million stem cells from Megan; they
would be giving me 8 million (more than enough) and freezing 2 million for a
rainy day.<span style="mso-spacerun: yes;"> </span>(She didn’t manage to
smash my record of 63 million over two collections earlier this year, but I
won’t rain on her parade. She did a good job!). <o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">The process of the
allo stem cell transplant is rather anticlimactic. It’s nowhere near as
involved or complicated as getting an organ transplant. As my nurse Andy
quipped, “It’s just like a blood transfusion, only crunchy”. The nurses had all
warned me it was boring, “even more boring than an auto transplant”. When I had
my auto SCT in April, it was all very futuristic looking with the cryogenically
preserved cells arriving in a frozen cylinder and being dipped into a “mini
pool” for defrosting. But this time, for the allograft, the cells were
delivered “fresh”. They were slung up onto the pole and as they like to infuse
them quickly, they vanished rather fast. Nonetheless, there was a captive
audience (mum, Jacqui, Megan, Tim and about 2-3 nurses) to witness their
delivery, and while it wasn’t a cataclysmic, Captain Planet-esque combination
of sister superpowers like some might’ve hoped, it was a jovial occasion.<o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-lZxeegsVMsg/UJDbZtn3w4I/AAAAAAAAAZQ/Up0mOfYWKfg/s1600/hippojo4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-lZxeegsVMsg/UJDbZtn3w4I/AAAAAAAAAZQ/Up0mOfYWKfg/s1600/hippojo4.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Megan's stem cells, transported to my room via a state-of-the-art cooler bag</td></tr>
</tbody></table>
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<span style="mso-ansi-language: EN-GB;">Before they gave me
the cells, they had to give me some pre-meds, one of which was Phonergan, used
to treat allergic reactions. Phonergan has a habit of making me very drowsy,
and as expected, this dose went straight to my head, when I instantly started
slurring my words and letting slip some “Bethisms” (that were then published on
Twitter, thanks Tim and Jacq). At least it added a little excitement to what
was a seemingly mundane process. <o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-GB;"></span><br /><span style="mso-ansi-language: EN-GB;"></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">But despite outward
appearances, it was a momentous occasion. I now have a little bit of Megan
inside me, a gift that hopefully marks a new lease of life. Now I just have to
wait for a week while her stem cells grow and develop, and produce vital white
blood cells which we will hope will fight the cancer, and finish the job that
my immune system, and the chemo, couldn’t manage to do. I will have a new
immune system, a new blood type (from B+ to AB+) and maybe even a cure for my
hayfever if I’m lucky. (Just kidding, I don’t really care about the hayfever
part, though that would be nice.) <o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-GB;"><br /></span></div>
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<span style="mso-ansi-language: EN-GB;">In the lead-up to and
following the transplant, I have been on a constant infusion of anti-rejection
drugs to ensure my body doesn’t reject her stem cells, and I will stay on this
medication until they eventually wean me off it, hopefully around that magical
day 100. <o:p></o:p></span></div>
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<span style="mso-ansi-language: EN-GB;"><br /></span></div>
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<span style="mso-ansi-language: EN-GB;">I am now on day +1 of
my transplant and for now, it is just another waiting game. <span style="mso-spacerun: yes;"> </span>Waiting for my blood counts to drop, and
Megan’s stem cells to kick in. I am unable to leave the bone marrow unit, but
they encourage me to walk around, so all I can really do is little pathetic
laps of a very small space, wheeling my “pole” along with me. If anything, I
now have some idea of what it must feel like to be Julian Assange.</span></div>
<div class="separator" style="clear: both; text-align: center;">
If all goes well, I
will be out of here in 3 weeks, give or take. I am bored already, but the less
eventful the coming weeks are, the better, really. I know I still have a long
way to go, but every day is one day closer to getting out of that door. </div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-atbgph9Wh_I/UJDbGxk4dZI/AAAAAAAAAY4/V8pcZnXWiO0/s1600/hippojo1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-atbgph9Wh_I/UJDbGxk4dZI/AAAAAAAAAY4/V8pcZnXWiO0/s1600/hippojo1.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Hippo Jo, in this together</td></tr>
</tbody></table>
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Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-61888862242791661482012-10-31T15:11:00.000+11:002012-10-31T15:11:12.329+11:00Admission accomplished!<div dir="ltr" style="text-align: left;" trbidi="on">
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So much to report this week that I think I will have to split this into two posts. But above all, two main, potentially life-saving things have happened:</div>
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1. The "Flying Dorts" cycling team completed their 200km Ride to Conquer Cancer with flying colours over the weekend, contributing a whopping $18,000+ towards vital cancer research at Peter Mac (pictured below - this photo is now blu-tacked above my daily cell count whiteboard for inspiration)</div>
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<a href="http://2.bp.blogspot.com/-Ru0HOC_wx2g/UJChRnCYh_I/AAAAAAAAAYk/_fAM_4slr58/s1600/IMG_4563.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-Ru0HOC_wx2g/UJChRnCYh_I/AAAAAAAAAYk/_fAM_4slr58/s1600/IMG_4563.JPG" height="213" width="320" /></a></div>
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2. The stem cells are in! About 8 million stem cells were taken from Megan via apheresis yesterday morning and brought to me in the ward in the afternoon, and administered by drip. Not much really happens for a few days until these stem cells grow and develop new white blood cells and hopefully the "takeover" begins. </div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">I'll focus on the first point for this post, but to prevent me (and you) from getting lost, I will cover events in chronological order. </span></div>
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On October 21, I checked into the BMDI (Bone Marrow Donor Institute) apartment that will be my home for the next few months (apart from the 3-4 weeks I spend in hospital). These apartments are run by a charity called the Fight Cancer Foundation, of which Hugh Jackman is actually a patron (there is a wing named after the Jackmans in BMDI house). It's a great apartment and only a short stroll from the Royal Melbourne Hospital, so we've been lucky to secure such a facility. </div>
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<br /></div>
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My first five days of chemo were administered in this apartment by Hospital in The Home (HITH), which was great because it shortened the time I had to spend in hospital significantly. It was kind of like having your own Mary Poppins who popped in every day with her collapsable pole (to hang the chemo from) and bag of goodies, though there was no 'Spoonful of sugar' song with it, thankfully. The chemo, Rydarabine, was given as a 30-minute infusion every day and was pretty gentle stuff. I didn't really get any symptoms and remained very active over these 5 days, getting out and about.</div>
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<span style="mso-ansi-language: EN-GB;">Then arrived Saturday, which was a big
day. As well as being my hospital admission day, it was the day my cousin Kate, brother Sam, sister Jacqui and dad Keith set off on their massive 200-kilometre challenge, The Peter Mac
Ride to Conquer Cancer. The ride began in Albert Park and ended in Healesville
on the Saturday, then it was all the way back to Albert Park on the Sunday. Amazing feat and
so proud to see all four manage the whole ride without giving up – they should
all be proud, as I am. What a team!<o:p></o:p></span></div>
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<br /></div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-EkTq1JMrJaw/UJCgaMSatNI/AAAAAAAAAYc/cEe6THOUu8M/s1600/IMG_4552.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-EkTq1JMrJaw/UJCgaMSatNI/AAAAAAAAAYc/cEe6THOUu8M/s1600/IMG_4552.JPG" height="290" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "Flying Dorts" crossing the finish line</td></tr>
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That Saturday morning I decided since my
family was tackling a brave 200km in two days, then the
least thing I could do is drag myself out of bed at 5am to see them off at Albert
Park. Typically, it was a freezing Melbourne morning, drizzling and grey with
an icy wind blowing. But it was inspiring to see all the cyclists in their
yellow vests, and of course as I hugged the four members of my team and wished
them luck, it was impossible to hold the tears back. A moving moment, an
amazing event that raised $6.2 million for Peter Mac, making it the biggest
single fundraising event in Australia. We raised more than $18,000 (and still counting, I think) of that total
and that was thanks to the generosity of our friends, family and supporters. Having been through the list of donors on the website, we have been so touched; some of you have been beyond generous. At loss to thank everyone individually at this moment, please do know that every donation has meant so much, and that includes everyone who attended the range of fundraisers we've held over the past weeks. </div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-8FTv4hQv3xs/UJCfHF2SCYI/AAAAAAAAAYI/Gyo5ai0YQTY/s1600/IMG_4159.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-8FTv4hQv3xs/UJCfHF2SCYI/AAAAAAAAAYI/Gyo5ai0YQTY/s1600/IMG_4159.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Megan and I at her High Tea fundraiser</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"></span></div>
<div class="MsoNormal">
I’ve also started digging into my wonderful box of letters
presented to me by Suze and Mars at the High Tea (which was great, thanks
everyone who attended and to Megan and Mum for putting in the hard yards to
organise and cook). I have decided I will read one letter a day while in hospital and
have been very touched by what I have read so far. In the last few weeks, fundraising
for this ride has taken me to a trivia night, a Grease movie night (so much fun
singing along, forgot what an awesome classic the film is), Megan’s High Tea in
Traralgon and unfortunately I missed my brother’s gig in Bendigo but heard it
was a huge success! I’m sure the ‘Moxie band’ will be getting more bookings, my
31<sup>st</sup> next year maybe? In the meantime, my story has also appeared in
the <i>Latrobe Valley Express, Bendigo Advertiser</i> and <i>The Melbourne Times</i>. Am happy to admit I am a bit
of a media tart, just send any enquiries via my agent<span class="Apple-style-span" style="font-family: Wingdings;"> :)</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: Wingdings;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-gV5mTKTJha0/UJCewi220ZI/AAAAAAAAAX4/negKFr8uq1Y/s1600/IMG_0816.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-gV5mTKTJha0/UJCewi220ZI/AAAAAAAAAX4/negKFr8uq1Y/s1600/IMG_0816.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My wonderful box of letters</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><span class="Apple-style-span" style="font-family: Wingdings;"><br /></span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-o1-n2MWMbVA/UJCe154QOrI/AAAAAAAAAYA/UanfaZE-LXQ/s1600/IMG_0818.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-o1-n2MWMbVA/UJCe154QOrI/AAAAAAAAAYA/UanfaZE-LXQ/s1600/IMG_0818.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">News travelled as far as Bendigo ....</td></tr>
</tbody></table>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><span class="Apple-style-span" style="font-family: Wingdings;"><br /></span></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">It's been an action-packed time. After my last pre-transplant test about 2-3 weeks ago, my PICC
line was removed from my arm. It had been my companion for three months. I
remember getting it put in back in July was so painful, not physically, but
mentally because it signified the start of a very difficult period of further
treatment. The time of relapse was a very dark period for me, it floored
me, probably even more than the original diagnosis did, and put a big dent in my spirit. Three months later (now) I feel that psychologically I am in a much better place. When I start worrying about the
transplant outcome, I tell myself not to worry about something that hasn’t
happened yet, but that is easier said than done. I think about it every day, how can I not - it's my life? When
my mind wanders to a life in remission – growing my hair back, going back to
work, getting my independence back, getting my strength back, I stop myself, as
it hurts too much to think that maybe that won’t happen. I have thought about
the alternative, death, too, and I know I definitely fear that a lot less than I used to. It's not a nice thing to think about, but it really is something I <i>do have to</i> think about. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">But one positive thing about all this, is that I have tolerated the chemo very
well so far which has allowed me to do a lot of things that other cancer patients
simply cannot do. Like go to Queensland, for instance. Two nights in Brisbane,
two nights in the Sunshine Coast (thanks to my cousin Dan and his lovely girlfriend
Stace). 28 degrees, catch-ups with some wonderful friends, swims in the ocean,
pool and Jacuzzi (which wasn’t possible with my PICC line nor with the
Hickman’s Line I got inserted last Monday – I made the most of this week of line-less
freedom!) Amid
the drudgery of hospitals and appointments, my life has glimpses of
awesomeness, and I am grateful for that. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-LDbA0CA05Ts/UJCffiT12MI/AAAAAAAAAYQ/lLHBYQm65uc/s1600/IMG_4273.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-LDbA0CA05Ts/UJCffiT12MI/AAAAAAAAAYQ/lLHBYQm65uc/s1600/IMG_4273.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gotta love Brisbane ....</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"></span></div>
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So Saturday afternoon
I was admitted to the Royal Melbourne Hospital. My room in the
Bone Marrow Transplant unit has a view of the city skyline, ensuite, plenty of
space for visitors and iPod dock. Penthouse
ensuite apparently, a nurse told me. Breakfast included, room service, the
culinary delights of Lygon Street only streets away … I have already busied myself making the room more 'homely' with a few decorations and things, since I'll be here for a while. </div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Since my admission I've been feeling pretty good; I think I am just glad now that I am here and getting on with it.
In the past weeks, out there in the real world, I wasn’t really thinking about it
at all, I was just enjoying my freedom, and I’m pretty sure in about a week, the
back-in-hospital blues will set in, but for now, it is just on with business. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">On Sunday night, I got a special visit from four members of the "Flying Dorts" cycling and crew team who informed me they have signed me up for next year's ride! 2013, here I come. Apparently there were a few sore bums and tired muscles but they all fared pretty well, and as I've said before, I'm immensely proud. $6.2 million will go a long way, and I am so confident that in the years to come we will be able to eliminate cancer once and for all. </span></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--></div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-34148392143897799332012-10-13T20:37:00.004+11:002012-10-13T22:05:50.411+11:00Allo, stem cell transplant #2 … I’m ready!<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-DZUfvGGArAQ/UHlAXdNTEFI/AAAAAAAAAXU/rOuYmgniP8E/s1600/blogcollage.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://2.bp.blogspot.com/-DZUfvGGArAQ/UHlAXdNTEFI/AAAAAAAAAXU/rOuYmgniP8E/s1600/blogcollage.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From diagnosis to now: what a journey, huh?</td></tr>
</tbody></table>
<br />
<br />
So, 10 days until my allogeneic stem cell transplant, and I am as ready as I’ll ever be.<br />
<br />
<div>
Last week I had an appointment with my oncologist. He was beaming when he called me into his office, ecstatic about my PET results. "For a while there I wasn't sure if I would make it to the transplant," I said, and he replied, "That was a very real concern." The appointment was to discuss these PET results and the next step forward, which was the allogeneic stem cell transplant. This part of my journey would be handled by a team at the Royal Melbourne Hospital, so this would be my last appointment with my oncologist at Peter Mac, hopefully for a very long time, or forever, if the transplant goes well. Part of me was sad about this; as much as I have resented the trips to and fro from Melbourne, the lengthy hospital stays, the constant blood tests, follow-ups, phone calls, Peter Mac has become like a second home and the people in it like an extension of my family. It actually makes me tear up when I think about how, as horrible as my journey has been, there have still been many joyful moments amongst it all, thanks to the support of the staff and the people around me. Having spent time in many other hospitals, overseas and in Australia, I have to say that Peter Mac is really the only place where I haven’t felt like a number. With many of the staff I felt like I was their only patient, to the point that I felt surprise, and a touch of jealousy, when I saw them with other patients. The staff there just have this magical way of making you feel like that. </div>
<div>
<br /></div>
<div>
I have spent most of this week at what will be my new second home, the Royal Melbourne Hospital. I was quite overwhelmed by how much bigger the place is compared to Peter Mac, to the point that you can feel a little bit small. But the staff are all lovely and I'm sure in no time I will develop a similar fondness for the staff at this hospital. I am still trying to navigate my way around its convoluted maze of corridors, but the place that I will be tied to for the next four months is the fifth floor, which houses the Bone Marrow Transplant and Haematology units. </div>
<div>
<br /></div>
<div>
My week has been filled with a barrage of pre-transplant tests, to check that my organs are all in working order in the lead-up to the transplant. Over two days, I had a bone density scan, bone marrow biopsy, dental scan and exam, a million blood tests, respiratory tests and also met with a number of people such as social workers, dieticians etc. On the Friday (yesterday), I had a PET scan. Everything came back satisfactory as far as the transplant is concerned, so it will be going ahead on October 22 as planned.<br />
<br /></div>
<div>
So to give you some idea of exactly what I am in for from this date, here is the rundown:</div>
<div>
I will be admitted to hospital on October 22. However, for the first five or six days of treatment, I will not be in the hospital, I will be receiving chemotherapy via 'Hospital in the Home' ('home' being a charity-run apartment 5 minutes from the hospital). On about Day 6 I will receive a more toxic chemotherapy and from then on the Bone Marrow Transplant Unit will be my home for the next three weeks, give or take. </div>
<div>
<br /></div>
<div>
At the same time this is happening, my sister Megan will be getting daily injections of a drug called GCSF, which will stimulate blood cell production. As a result of this drug, Megan's body will produce an abundance of stem cells, which will spill into her bloodstream. On October 30, they will collect the stem cells from her bloodstream by hooking her up to a giant machine, <a href="http://moxiemoxiemoomoo.blogspot.com.au/2012/02/stem-cells-phantom-bugs-and-flowers.html">much like the one I was introduced to at Peter Mac way back when I underwent my autologous stem cell transplant in April</a>. It's pretty cool that Megan is doing this for me, but really, she gets the easy part. And I challenge her to match my 63 million stem cell count I managed earlier this year (though Royal Melbourne’s Bone Marrow Transplant co-ordinator did tell me about someone who managed a collection of 140 million stem cells, which made me feel less special). </div>
<div>
<br /></div>
<div>
By giving me Megan's stem cells, they are effectively giving me a new immune system. My immune system was unable to get rid of the the cancer, so they are hoping that Megan's just might be able to do the trick and eliminate those tiny little cancer cells that are left. These stem cells are given to me via a drip, much like a blood transfusion. They will be given to me "fresh", that is they will be taken from Megan and given directly to me, they won't be frozen, stored or any of that jazz. </div>
<div>
<br /></div>
<div>
When they give me Megan's stem cells, my immune system will be suppressed. Otherwise my immune system will start fighting hers, and won’t allow it to take over. Which is where the chemotherapy comes in - this will keep my immune system quiet so that Megan’s immune system comes in fighting, and effectively take over from mine.</div>
<div>
<br /></div>
<div>
After I am given the stem cells, I will spend three weeks in hospital, and that period probably won't be that much different to to the two and a half weeks I spent at Peter Mac for my autograft. The risks of something happening down the track, however, are much more pertinent. For three months I will have to visit the Royal Melbourne three times a week so they can closely monitor me and look out for two main things: graft vs host disease, and infections. </div>
<div>
<br /></div>
<div>
Graft vs host disease occurs when Megan's immune system (the graft) recognizes the cells in my body (the host) as "foreign" and attacks them. This is exactly what we want to happen with the lymphoma; but GVHD can affect the skin, liver and gastrointestinal tract, causing things like a bad rash, diarrhea, vomiting, etc. Results in the past have shown that having a little bit of GVHD is favourable as usually this also means that the graft is attacking the cancer too, but GVHD can be very severe, to the point that it can cause life-threatening complications. If the GVHD is getting out of hand, I will be treated with steroids (Prednisolone, a drug I know well) which will suppress my immune system and stop it from attacking Megan's. The downside of this, however, is that it leaves me vulnerable to infections and it may also reduce the graft-versus-tumour effect. So you can see how a lot can go wrong here, and there is a fine balance that requires close monitoring and medical expertise. </div>
<div>
<br /></div>
<div>
The next milestone that I will be working hard to get to is 100 days post-transplant. If I can get there with a) no cancer and b) no major complications from the BMT, my contact with the hospital can be reduced to three-monthly scans. It will be a monumental day, and I <i>will</i> get there. </div>
<div>
<br /></div>
<div>
So am I scared? I am. But I am more scared of the transplant failing to cure me than of what it is going to do to me. I don't expect it to be a walk in the park, but I am ready for it. I am tired, both physically and psychologically, but I know I can take anything this cancer throws at me now. It's been a long year. I have had 8.5 rounds of chemotherapy, one round of high-dose chemotherapy, an autologous stem cell transplant and now I am heading into an allogeneic stem cell transplant, all within 12 months.<br />
<br />
But right now I am so, so thankful that I have a date for my transplant and that is happening quickly. Yesterday I got a call from one of my doctors about my PET results. Now remember that the last PET scan I had was two weeks prior and it had come back clear. Well already, yesterday’s scan showed that the cancer is growing again in the chest area and possibly in the pelvis as well. They are small spots, but they are there. After two weeks. Sometimes I am just blown away by how aggressive this cancer is, and how powerless I am to stop it. But I feel so blessed that there was a cancellation in late October, that allowed me to get a transplant this soon. I just hope and pray that it doesn’t leave any cancer cell unturned, so to speak.<br />
<br /></div>
<div>
I would be lying if I said I still don't worry about the cancer coming back. Relapsing after the allograft is still a pretty big risk, but without the allograft, the risk of relapse is 100% (well, as shown on the scan, I have effectively already relapsed). As long as there is still even the slimmest chance of a cure, I have to keep fighting.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-u94Ug1psvM8/UHkvvDpWVUI/AAAAAAAAAXA/iE0z2Dicq6s/s1600/bukowski.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="http://1.bp.blogspot.com/-u94Ug1psvM8/UHkvvDpWVUI/AAAAAAAAAXA/iE0z2Dicq6s/s1600/bukowski.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this quote - thanks Glenn</td></tr>
</tbody></table>
<br />
The timing of the allograft means I won’t be able to be involved with the Peter Mac bike ride, which I had signed up for as a crew member. It also means that Megan, as my donor, also won’t be able to partake as a rider. This is really disappointing - I just think it would have been so moving to see all those riders, including members of my family, putting themselves out there to raise money for a cause so close to my heart. But then I think of the cancer cells already dividing and multiplying inside of me … and that’s irony, right? That the one reason my family is taking part in this ride is also the reason I can’t take part.<br />
<br />
Anyway, to conclude: today I was sitting on the tram and as it tends to do on long public transport jaunts, my mind got thinking: to how wonderful the last few months has been. I have enjoyed trips away, weekends with friends, laughs, catch-ups with old friends that are just so wonderful in such a unique, warm way because it’s like no time has passed. I want to thank everybody that I have spent time with over the last six to eight months, everyone who has sent me messages, taken the time to meet up with me, put a smile on my face and served as a wonderful distraction and a reminder of how lucky I am to be surrounded by such awesome people. You all know you are. And an extra special thank you to those who have organised and supported recent fundraisers for Peter Mac, it means so much. Despite all the difficulties I have had this year, there have also been plenty of uplifting and genuinely funny moments, and they are the things that keep me sane. </div>
</div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-49665690691981167982012-10-03T00:22:00.003+10:002012-10-03T00:30:33.163+10:00Pedalling a good cause<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
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Last time I wrote, I had good news. I’d
had one round of chemotherapy, and the CT scan that followed had shown that
despite the slim odds of this chemotherapy succeeding, the lymphoma had shrunk.
I never saw the scans, so I really didn’t know just how significant the
response had been. But the doctors were happy, so I was happy too. And this was
the first good thing that had happened to me for a while, so I revelled in it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">So I went into round 2 of the chemo and
once again handled it pretty well – I battled some fatigue and low blood counts,
but overall I held up OK. After round 2, I got another PET scan, my seventh so
far (I have had so much radioactive tracer injected into me I am surprised I am
not glowing right now). I think it is pretty obvious to anyone who has been
following my blog how much I hate PET scans, not just because I usually have to
get up early and fast for them, which makes me hungry and grumpy, but also
because they often bring anxiety, and sometimes heartbreak, too. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">I had my PET on a Wednesday. On Friday, I
still didn’t know the result. On this day, I was sitting in pathology at Peter
Mac, waiting to get a blood test as part of my weekly routine, and I bumped
into the lymphoma nurse. “Did you get your PET
scan results?” she asked me. “No, I haven’t heard anything, yet,” I replied.
“Well, aren’t I glad I bumped into you then,” she said. “You had a complete
response.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">It took me a minute to process this. In
medical terms, a “complete response” when talking about a PET means there is no
cancer showing on the scan. I wasn’t expecting this at all. I was hoping it
would have shrunk, but I wasn’t expecting the scan to come back completely clear.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">Now, of course this does not mean I have no
cancer in my body. As I later discussed with the head of the transplant team
the following week, there is “no doubt” (his words) that there are still
microscopic cancer cells floating around my body. They are just not big enough
for the scanner to pick up. But this is the best result I could’ve hoped for. And to be honest with you, a few months ago, I had
serious doubts about whether I would ever have a clear PET scan again. I think
my doctors had serious doubts too, if the truth be known. After discussing the result, one of the
doctors from the transplant team came to me and shook my hand and said, “I am
very, very happy to see you again.” </span><br />
<span lang="EN-US"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-ub7RCszpGhI/UGrwXfIgpnI/AAAAAAAAAWM/aZTpsBXd0t0/s1600/IMG_3837.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-ub7RCszpGhI/UGrwXfIgpnI/AAAAAAAAAWM/aZTpsBXd0t0/s320/IMG_3837.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After my negative PET scan, I managed to fit in a long weekend to the Grampians, where I spent time at my cousin’s amazing house at Hall’s Gap. A wonderful weekend with wonderful people - and the steep walks were all worth it!</td></tr>
</tbody></table>
So now, it is hoped that the allo-stem cell
transplant will eliminate those microscopic cells, those cells that the
chemotherapy just can’t seem to eradicate. I have finally reached the final
frontier, my only and last chance at a cure. For a while the allograft just
kept slipping so far away that it started becoming some kind of elusive dream,
I felt like I was never going to get there. But I am there now, and suddenly
I am a bit nervous. I’ve been through a stem cell transplant before, but this
one is far riskier and far scarier, and I really don’t want to go through it
all again. But I have to.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">There are still no guarantees that the
allograft will work. In fact, according to medical research, the chances of it
not working are greater than the chances of it working. But right now I refuse
to even think about that possible outcome, I just can’t. I know how dangerous
it is to get ahead of yourself in this game. I have to always bring myself back
to now – I will cross bridges once I get to them. Right now, hope is keeping me
going, and even if it ends in disappointment, it is better than having no hope.
</span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-US">Today I got a phone call from the
transplant team. A bed has become available for me in the third week of
October, the exact date to be confirmed. It is important for me to go quickly
into this phase of treatment in case the lymphoma decides to go crazy again,
like it did back in June/July. So I have three weeks 'till I face this big,
hopefully final, fight. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">Of course it shouldn’t matter in the scheme of things, but of
course it still really does bother me that this means I won’t be going to Harvest Festival
to see my favourite band, that I will miss the Coldplay concert I intended to
attend with my sister (yes, I know it is totally uncool to like Coldplay but I
don’t care what you think), that I will miss Spring Racing Carnival and a whole
bunch of other stuff. But once again I have to look at the bigger picture. On November 11, it will be a year since my diagnosis and
I will most likely be in hospital – how fitting that things should come full
circle like that. But a year ago I was just beginning my journey, and hopefully
this time around I will be finishing it. It’s so hard to believe that this cancer fight has taken up almost a whole year of my life. I can’t even remember what ‘normality’ was, and going back to it seems a long, long way away.</span><br />
<span lang="EN-US"><br /></span>
<span lang="EN-US">But as well as my stem cell transplant, there will be another big, massive event in October which will no doubt also be a challenge for those involved: </span>the Peter Mac Ride to Conquer Cancer.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">This is obviously an event close to my
heart – Peter Mac is like my second home. The doctors, nurses, support staff,
everybody in that place has been so amazing and made my journey that little bit
easier. I feel so lucky to live in a country where these facilities are
available. Peter Mac also carries out important research – just recently they
had a <a href="http://www.heraldsun.com.au/news/victoria/world-first-breakthrough-by-melbourne-scientists/story-e6frf7kx-1226422057472">world-first breakthrough in the fight against leukaemia and lymphoma</a>. What I
also like about supporting Peter Mac is that the money goes towards all cancers
– not just one specific kind. It breaks my heart that people
diagnosed with rarer diseases such as brain cancer and pancreatic cancer face a
5% chance of survival due to lack of funds and research. Once the funding is allocated, it can make such a difference: for example, 15 years ago, leukaemia killed 90% of patients, now that figure has turned on its head with a survival rate of 90%.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">My sisters, brother, dad, cousins and my
uncle have bravely taken on this monumental task of riding 200 kilometres in
two days to raise money for this cause. If they don’t raise their fundraising
targets this month, they won’t ride. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">Here is the link to my family’s team –
called the ‘Flying Dorts’. Listed in the members you will see my sisters Jacqui
and Megan, my brother Sam, my uncle Mick and my cousin Kate. You can donate
online, and it doesn’t matter how much, every bit counts.</span></div>
<div class="MsoNormal">
<a href="http://ml12.conquercancer.org.au/site/TR/Events/Melbourne2012?pg=team&fr_id=1060&team_id=8005">http://ml12.conquercancer.org.au/site/TR/Events/Melbourne2012?pg=team&fr_id=1060&team_id=8005</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">There are also several events to attend: my cousin has organised a Grease movie night fundraising
event in St Kilda, all proceeds going to Peter Mac:</span></div>
<div class="MsoNormal">
<span lang="EN-US"><a href="https://www.facebook.com/events/153856321422391">https://www.facebook.com/events/153856321422391</a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">For Gippslanders, my sis has also organized
a high tea fundraiser in Traralgon:</span></div>
<div class="MsoNormal">
<span lang="EN-US"><a href="https://www.facebook.com/events/463420987031721/">https://www.facebook.com/events/463420987031721/</a></span><br />
<span lang="EN-US"><br /></span>
<span lang="EN-US">My brother is also playing a fundraising gig at the Basement Bar in Bendigo on October 16. </span><br />
<span lang="EN-US"><br /></span>
So October brings its share of tough challenges, and like those cyclists who will take to the roads of the Yarra Valley and ride a ridiculous distance, I can’t wait to get to the other side and say, ‘I made it.'</div>
<!--EndFragment--></div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-86845486819529162272012-09-13T18:26:00.000+10:002012-09-13T18:26:29.582+10:00Your heart is a weapon the size of a fist. Keep fighting. Keep loving<div dir="ltr" style="text-align: left;" trbidi="on">
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Sorry I've neglected you lately, blog, but I thought I'd hold out until I got some good news. I don't much like writing about bad news. I don't like receiving it, and I definitely don't like passing it on. Just recently, it seems the universe decided that I deserved a break, and God knows I needed it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About three or four weeks ago, I was sitting in my oncologist's office, and I was crying. I had just received news that the last round of chemo I had undergone, Hyper-CVAD, had not shrunk the lymphoma, and my treatment plan had hit a massive speed bump. As I reached for the tissues, the oncologist said, "I think we'll all be reaching for those by the end of this session." I guess I am so caught up in my own journey that I forget what an emotional toll these things also take on the medical practitioners involved ... oncologists have to face the fact that many of their patients will die, and to have to look them in the eye and make them aware of that fact must be up there with one of the hardest jobs in the world. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My oncologist told me that the mission was the same: we were still seeking a cure, but our chances of getting there had taken a big hit. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The reality is: I have a relapsed lymphoma which is growing at an alarming rate, and we are running out of weapons to stop it. And when you're fighting a war, you use your strongest weapons upfront. So we've tried the R-CHOP, the high-dose chemotherapy, the stem cell transplant, all those things that have proven to have high success rates, but none of them could even put a dent in my lymphoma. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But there were options left. One option was a chemotherapy regime I'd never had before (I can never remember its name, but I think it's called "Gem-Vin"). Gem-Vin had a 30% of shrinking my cancer (to put it into perspective, R-CHOP, my first line of treatment, had a 90% success rate). But as I said to my oncologist, statistics mean nothing to me anymore, and they honestly don't. Things are either going to work, or they're not. All along the way, I have fallen into the small percentages: the 10 per cents, 5 per cents, 15 per cents ... so you know what - 30 per cent actually sounds like my kind of odds, bring it on!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The other option presented to me was a clinical trial. This was a completely unknown quantity: drugs that had only been tested on a very small sample of people. It was too early to tell how effective they were; for instance, the drug worked for one person but not another; does that eventually turn into 50% or 1 in 100? It is a complete medical leap of faith.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So I decided 30% was better than nothing, and the Gem-Vin would be my next line of attack. We'd pulled out the tanks, bazookas and machine guns but they hadn't done the job, and now we were stuck with the clapped out rusty old hunting rifle from the back shed, and bullets are in short supply. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But sometimes that's all you need. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Gem-Vin was pretty easy to tolerate. There were very few side effects and I got through my low period with few problems. So I did what any cancer patient would do: I went snowboarding! My sister booked us an amazing apartment at Falls Creek and a group of us piled into our cars and spent two nights on the slopes. I managed to surprise even myself, going out every day and spending the whole day boarding ... it's nice to know I can still do these things after eight chemo treatments and a stem cell transplant. I would collapse in a heap at the end of the day, but I did all right. Once again I felt it was something I needed to do, revisit my 'normal' life, enjoy a taste of my former freedom. It was three days during which the only medical-related thing I had to worry about was how to keep my PICC line out of the jacuzzi. It was three days of pure escapism and it was great. </div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-UFwESS7WpPo/UFGUg6ZD_tI/AAAAAAAAAVo/O4xBQlGa8DQ/s1600/IMG_3677.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-UFwESS7WpPo/UFGUg6ZD_tI/AAAAAAAAAVo/O4xBQlGa8DQ/s320/IMG_3677.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the 'Falls Crew 2012'</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-On7Un93_I7Q/UFGU1p6BmjI/AAAAAAAAAVw/AJN8h5j4KXU/s1600/IMG_3681.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-On7Un93_I7Q/UFGU1p6BmjI/AAAAAAAAAVw/AJN8h5j4KXU/s320/IMG_3681.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunset from our balcony</td></tr>
</tbody></table>
<div class="MsoNormal">
When I got back to Melbourne, it was a snap back to reality. I was booked in for a CT scan to see how things were progressing with the chemo. Pre-scan anxiety wasn't such an issue this time around, in many ways I think I have become numb to it. It is a very difficult thing to stop yourself from having expectations and hope in a bid to avoid heartbreak; I think it is human nature to feel these things. But for me, I saw it as simply going through the motions, but I would be lying if I said I didn't hope so hard it hurt as I passed through that whirring donut once again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next morning I was booked in for chemo. I went to the fifth floor, and sat in the chair in front of the window overlooking Albert Street as they fed me the chemotherapy through the drip. I hadn't received news on the CT scan yet but I had missed two calls that morning ... I recalled that one of my friends, in a spooky sixth-sense way, had told me she "had a good feeling about this chemo" several weeks before. I hoped to God she was right.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And she was! A young haematology registrar was the first to break the news - the lymphoma had responded to the chemotherapy, and there had been shrinkage across <i>all</i> sites in my body, which was a really positive sign. My oncologist was very happy with the response. It was hoped that after one more round of Gem-Vin, I could finally get a shot at my only chance of a cure: the allograft. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So right now I am on day 7 of my second round of Gem-Vin. I have a PET scan in a week or so which will determine whether the allograft can go ahead. Things are falling into place, but as I know too well, nothing is certain, and I still have a long way to go. All I know is that it feels so good to finally, finally have some good news after a litany of worst-case scenarios. The result also gives me hope ... if this chemotherapy had a 30% chance of working, and it worked, surely the allograft can work too. As long as I keep falling into those small percentiles, I know I can do it. </div>
</div>
Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com0tag:blogger.com,1999:blog-3856416568376282741.post-88850366923841553332012-08-09T21:27:00.000+10:002012-08-09T21:44:20.766+10:00Road trips and road blocks<div dir="ltr" style="text-align: left;" trbidi="on">
<span class="Apple-style-span" style="color: #a64d79; font-size: 19px; font-weight: bold;"><i><b>Q: What did the skin say
to the syringe? </b></i></span><br />
<div class="MsoNormal">
<h3 style="text-align: left;">
<span style="mso-ansi-language: EN-GB;"><i><b><span class="Apple-style-span" style="color: #a64d79;">A: Don’t be such a prick.</span></b></i></span></h3>
</div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><i><br /></i></span></div>
<div class="MsoNormal">
These are things I have to resort to to entertain myself in hospital; making up lame jokes like the one written above. They can also
help lighten the mood when things get – much like the weather at the moment –
bleak.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Because there hasn’t
been that much to laugh about lately, really. On Tuesday, I had PET scan no.6.
Since I am an old hat at PET scans, the whole procedure is pretty much routine
for me now: arrive to hospital starving hungry, tired and grumpy (after 6-12 hours of
fasting), fill out a form, get called into a room, change into hideous hospital-provided pants (because the metal zipper of my jeans will interfere with the scan), get injected
with radioactive liquid, lie in a dark room for an hour, lie on the PET scanner
bed and get passed through the whirring donut. I have grown to hate PET scans and they are usually preceded by two days of major pre-scan anxiety, which means I don't sleep well the night before and am generally a grumpy, cantankerous person for a day or two and horrible company. </span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">This time around I had
pre-scan anxiety like no other. I literally had two hours sleep the night
before the PET. It’s really no wonder, since only one of six scans have given
me anything to celebrate. PET = pain, in my book. But additionally</span>, I had a very bad
feeling because of the signs my body had been giving me. I didn’t get many side
effects from the chemo, and in my third week, when my blood counts were coming
up and I should’ve felt better, I felt very, very tired, my appetite was next
to nothing and I had the occasional night sweat – at times I felt worse than I
had in the previous two weeks of my chemo. Which just gave me an inkling that
the cancer was still hanging around; I felt a lot of these 'old' symptoms were coming back.</div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">And it really shows
how in tune with my body I actually am, that my hunch was right. My results
weren’t great. Basically, the cancer has barely changed. It hasn’t really grown,
but it hasn’t shrunk either. "If you're a half-glass-full kind of person" as my haematologist would say, it <i>has</i> halted the lymphoma’s progression, which is <i>something</i>, as pre-chemo, it was growing mega-fast.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">But what it means is that
I can’t have the stem cell transplant on September 3 as planned, because there
is still too much cancer for it be to curative. Before the SCT can go ahead I need more chemo (just to add
to the bucketloads I have already had) and this time we are heading into
unknown territory. They’re going to have to try a chemo that hasn’t seen my
lymphoma before - which could be a good or bad thing. Good because my body
hasn’t built a resistance like it clearly has to the Hyper-CVAD, bad because
it might not work. But the most annoying thing in all this is that they will
have to push back the stem cell transplant even further – to something like
November. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Just another obstacle,
another change of plans, and my chance for a cure just pushed even further
away. I <i>really, really </i>needed some good news this week – all of my last
consultations with doctors have been bad news, and not just bad – worst-case
scenario a lot of the time. Oh crap - your cancer’s come back after 6 cycles of
chemo and a stem cell transplant, oh shit, now your cancer is growing at an
unprecedented rate and you need more chemo, oh !@#%, the chemo didn’t really do
the job, now we have to switch to a different poison that might not work. The
fact that I want to scream right now would not come as a surprise.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"><br /></span></div>
<div class="MsoNormal">
And … depression. Oh
boy, do I understand depression so much more than I ever did. I feel for anyone
who has to go through it, it is a dark, dark place to be. I was so optimistic
when I began this journey, and I honestly believed I would beat this disease.
Death didn’t even register as an option. Now things are different, and dark
clouds of doubt hover over me every day, because as hopeful as I would like to
be, I also need to be prepared for the fact that things won’t work out. The
result is me trying to hold myself in some kind of emotional ‘limbo’ where I
don’t get my hopes up but I don’t slip into the depths of despair either. It is
very, very difficult. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The last round of
chemo was a busy cycle, and mostly due to Matt being here, though he’s gone
home now. Poor Matt– having been here when I got my bad PET scan results, he
was dragged onto my horrible rollercoaster of hospital visits, family dramas,
last-minute plan changes, antibiotics and all the things that have become a
normality to me. Though, even I have had a three-month break so it’s been
pretty hard for me too. The timing couldn’t have been more wrong, but it wasn’t
like I could tell my lymphoma to take a week off. It was a difficult time but
we also managed to make the best of a shit situation, and if Matt had no grasp
of what I’ve been through in the last six months, he certainly does now!</div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">But … all these things
aside, Matt and I got to do some pretty cool stuff, like a day trip to
Wilson’s Promontory (where we saw kangaroos! And emus! And a wombat) and Tarra
Bulga National Park which is totally cool and virtually in my backyard, and a
lot of other things, like some absolutely breathtaking sunsets … I’ve seen a
lot of sunsets all over the world and have decided that Australia has the most
dramatic, especially in winter. (And we got to travel in an XR6, because one
positive thing about having cancer is that your parents let you take their
sportscar out, when they would never do that otherwise. Win. ) I drove four
hours on day 7 of my chemo - clearly I couldn’t do any of the arduous walks -
but it’s nice to know that cancer doesn’t completely control my life, and sometimes I do get time to smell the roses.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-HpHZlLAfOB4/UCOc_-f6tJI/AAAAAAAAAU4/bkuCQLQStrU/s1600/Screen+Shot+2012-08-09+at+21.25.56.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="103" src="http://1.bp.blogspot.com/-HpHZlLAfOB4/UCOc_-f6tJI/AAAAAAAAAU4/bkuCQLQStrU/s320/Screen+Shot+2012-08-09+at+21.25.56.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wilson's Prom: one of my favourite places</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">It was so nice to get
out of town, to breathe in the sea air, feel the sand between my toes, delve
deep into the wet mossy rainforest … we really do live in such a beautiful, fantastic country. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">Wednesday it was back
to Peter Mac and by Thursday I was neutropenic. At this time I noticed a little
red spot on my hand, and I was instantly wary, as I’d had this type of skin
infection show up during chemotherapy before. What do you know, by Saturday the
redness around it had spread and there was clearly an infection going on. The
doctor gave me oral antibiotics so I did what anyone with neutropenia would do
– went to the footy!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;">That night I was
supposed to have my wig party which I cancelled because I was neutropenic (sorry
everyone. Will reschedule, I promise). Instead I went out with a small group of
my closest friends and relatives, and you know when you have one of those
awesomely fun nights, which is fun for no other reason than your ridiculously
awesome company? This was one of those nights. The next day my sides still hurt
from laughing, especially at the sight of Sam in my blonde wig. It was just a
really lovely night and I feel so lucky that I have so many people in my life
who can put a smile on my face, at a time when I don’t have that much to smile
about. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="mso-ansi-language: EN-GB;"></span><br />
<span style="mso-ansi-language: EN-GB;"></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-pbXVshHPK7k/UCObh-0-SgI/AAAAAAAAAUw/E3fVVXvgzkw/s1600/IMG_0521.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="237" src="http://1.bp.blogspot.com/-pbXVshHPK7k/UCObh-0-SgI/AAAAAAAAAUw/E3fVVXvgzkw/s320/IMG_0521.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh dear. Who are these people? Please note we were rejected from <br />
Section 8 which apparently has a 'no-wig policy'</td></tr>
</tbody></table>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-ansi-language: EN-GB;">The next day my hand was swelling up to the point it almost had its own postcode, so back
to the hospital I went. This is when they told me I had to be admitted to
hospital. I cried. Seriously, enough is enough, why do I have to have this
swollen, sore hand on top of everything? I went into hospital on Sunday, and
Matt was leaving Wednesday. The doctors said I would need IV antibiotics for a
few days and I couldn’t bear the thought of still being in hospital when he left.
One of the nurses knew how badly I wanted to get out and convinced them to
discharge me, with “pumps” of antibiotics that I could hook up to my PICC line
myself and carry around (I tied mine to my belt hooks). This meant I was out of
hospital, and I was so happy. So</span> now, I can give myself injections, I can give myself IV antibiotics and if you asked me to dress a PICC line I could give you specific step-by-step instructions and even show you how, and I bet I’d do it perfectly. Surely I should have some medical qualification by now (I told mum that I should have a nurse qualification soon, which was met with a ‘whatever’). </span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-S5n78XR3maM/UCOY76kADBI/AAAAAAAAAUY/ZHNg8uty1iI/s1600/anti.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="http://1.bp.blogspot.com/-S5n78XR3maM/UCOY76kADBI/AAAAAAAAAUY/ZHNg8uty1iI/s320/anti.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My antibiotics on the Great Ocean Road</td></tr>
</tbody></table>
<div class="MsoNormal" style="text-align: left;">
<span class="Apple-style-span" style="font-family: inherit;">So Matt <span class="Apple-style-span" style="font-size: 16px;">and I took this window of opportunity. At about 1pm we picked up a hire car from Melbourne, were ‘lunching’ in Lorne by 4.30, indulged in some unexpected whale spotting, got a speeding fine, nearly hit a roo, stayed in a gorgeous cottage with Jacuzzi in Port Campbell, woke before sunrise to see Loch Ard Gorge and 12 Apostles in the golden morning light, then made it to the airport around midday to get Matt on his plane to London. It was a lightning trip, but man it was worth it. However, at the end, we faced another difficult goodbye as I left Matt at “the door” of International Departures. You know, that door at Melbourne Airport that people who are flying overseas disappear behind, and sometimes you don’t know when you’re going to see that person again. This was the case for Matt and I, but I am so thankful I got to spend this time with him, I just wish circumstances had been better.</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: inherit;">The moral of the story is that when things are doom and gloom, there are still so many blessings in life. Things are definitely starting to take their toll, it has been 10 months since I was diagnosed, and I feel that this has been the most testing time of my whole journey, by far. But if I can get through this, I will feel like I can achieve anything. And even though, let's face it, my life is pretty shit, I am still able to laugh, share and enjoy this world that I live in. Because when I am unable to do that, the cancer has won already. While I am still breathing I just have to enjoy each moment I've got.</span><span class="Apple-style-span" style="font-family: 'Courier New', Courier, monospace;"> </span></div>
<br />
<br /></div>Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com1tag:blogger.com,1999:blog-3856416568376282741.post-29842396707740768842012-07-14T23:28:00.000+10:002012-07-14T23:33:40.852+10:00When the world tells you to give up ... hope whispers, 'Try one more time'<div dir="ltr" style="text-align: left;" trbidi="on">
If there were ever an
argument against planning, this would be it. A couple of weeks ago, I figured because I had a bit of time
off scheduled before my allograft, that I would book a trip for Matt (visiting
from London) and I to Cairns. We would swap the dreary Melbourne chill for
tropical weather, sandy white beaches, resorts with swim-up bars, a
glass-walled treehouse amongst the Daintree Rainforest and a jaunt to the Great
Barrier Reef. It was going to be amazing, and I was looking forward to it more
than anything in the world.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Until my PET scan
results came back. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I walked into the
haematologist’s office five days ago, roughly two hours after my PET had been
completed, he told me straight up: “Your PET: it’s not good.” My heart sunk. He
went on to explain that there had been “substantial growth” of the cancer spot
that had showed up six weeks ago on my scan - substantial enough to warrant a
major change in plans. In six weeks, the lymphoma cells had decided to go crazy
and go on a free-for-all spree across my body and as a result I have a growth
in my chest, several deposits in my abdomen and another in my arm. This was not
what I, or the doctors expected, and all I could do is stare at that scan,
breaking out in a cold sweat, wondering, <i style="mso-bidi-font-style: normal;">why,
just why</i> won’t this thing go away and let me get on with my life?<o:p></o:p></div>
<div class="MsoNormal">
For an allograft to be
effective, there has to be minimal cancer present. If there is too much
lymphoma, it simply won’t work. Unfortunately my lymphoma had reached the limit
of “too much”. So the doctor told me we would be switching to Plan B … or is it
Plan C, D, E or Z? I’ve lost track now.<o:p></o:p></div>
<div class="MsoNormal">
Which is why I now
find myself back in Ward 2 at Peter Mac, hooked up to a drip, while I get more
chemotherapy in a bid to shrink my cancer down to a manageable size so we can
still go ahead with the allograft. Instead of diving into the deep blue seas of
North Queensland, I leapt straight back into that murky teal green colour of a
hospital bed. <o:p></o:p></div>
<div class="MsoNormal">
The chemotherapy is
called Hyper-CVAD. I had two rounds of this chemo before my auto stem cell
transplant – it was pretty nasty stuff that made my eyelashes and eyebrows fall
out but it also put me into remission. It’s really the only thing that’s shown
any considerable clout in the fight against my lymphoma, so I’m hoping it’s
still at its fighting best this time around. I need it to be. <o:p></o:p></div>
<div class="MsoNormal">
In early August, I
will get another PET. If the cancer is small enough, we will go ahead as
planned with the allograft on August 27. If the cancer isn’t, I will undergo
another round of Hyper-CVAD, then go into the transplant. <o:p></o:p></div>
<div class="MsoNormal">
Neither situation is
ideal, as it places me at high risk of toxicity. The toxicity levels in my body
could lead to deadly implications during the allograft. Having the aurograft
and allograft in such close proximity was always a danger, but throwing the
extra chemotherapy into the mix has shaken things up a notch. In a word, I am
terrified. <o:p></o:p></div>
<div class="MsoNormal">
The doctors have made
it very clear they are still working towards a cure, and I am still as hopeful
as ever. I have dreams of reaching the end of this nightmare, my body, broken
and battered, shaky on its feet, but filled with pure elation because I went to
hell and back and made it. But I also have to be realistic. There is a very
real chance that I could lose this race. And if it wasn’t my life in the
balance then let’s face it, I would have given up ages ago. <o:p></o:p></div>
<div class="MsoNormal">
So needless to say, I
had to cancel that trip to Cairns. Kindly, the accommodation providers I booked
with in Cairns gave me a full refund with no charge when they heard my story,
but I guess it must’ve been hard for Colin from Beach Hideaway Cabins (complete
with friendly ocker Queensland accent) to take the $170 from me after I’d just
blubbered into the phone that I wouldn’t be making it because I had
chemotherapy. Unfortunately the people at Tiger Airways haven’t managed to show
me the same compassion yet though, it’s a sad world we live in sometimes. <o:p></o:p></div>
<div class="MsoNormal">
Anyway, if anything, this experience <i>has</i> given me a chance to be reunited with some old friends. The PICC line is back in my
arm, I’ve been peeing in a pan for days, Big Bertha (my IV drip monitor) is by
my side again, a big bag of chemotherapy is slung high on the drip, inside its
ominous-looking sun-protecting black bag and of course, there's the wonderful
nurses here at Peter Mac who all know me by name (either looking at me as if my
puppy just died or wisecracking, “I thought I told you we didn’t want to see you here
again.”) I’ve also welcomed an unrelenting river of loud, wonderful, colourful visitors (some of them
drunk, admittedly) to Peter Mac and the gloves, gown and orange ‘duckbill’ mask guests must don before they come into my ward (due to a flu outbreak) have provided many laughs and magical
photo moments (see below).</div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-r32vRwhAyvA/UAFzK0RsQeI/AAAAAAAAAT0/mnAFwI-cU50/s1600/IMG_0514.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-r32vRwhAyvA/UAFzK0RsQeI/AAAAAAAAAT0/mnAFwI-cU50/s320/IMG_0514.JPG" width="315" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The 'speck-duckular' respiratory masks at Peter Mac as modelled by the lovely Jacqui. </td></tr>
</tbody></table>
<div class="MsoNormal">
I’m sorry that people have to read this; I really wish I had some good news to bring for once, I really do. But you hear of people defying the odds all the time, and maybe I’ll make it to the successful list - it’s not over yet. A man in ward 2 the other day told me “You’ll beat it,” with such certainty I almost whole-heartedly believed him. I’m 30 years old, I have (supposedly) one of the most treatable cancers that exist and my body is not going to go down without a fight. And as much as it hurts me to see my situation tear up those
people that I love, I am also constantly reminded of how lucky I am to have them
here in the first place. There is still fun to be had, my friends, and there is
still hope. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
</div>Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com3tag:blogger.com,1999:blog-3856416568376282741.post-38089777913309462992012-07-05T15:14:00.000+10:002012-07-05T15:18:08.104+10:00C'est la vie<div dir="ltr" style="text-align: left;" trbidi="on">
So life continues on, as it has to. On Monday, June 9, I will get another PET scan,
my fifth all together (so far the third one is the only one that has brought any
good news). The results of this PET will play a big part in what the next step
will be, but as it stands, I will be undergoing my allograft on July 27. That
is, I will be receiving my sister’s stem cells that day, a day which they refer
to as “day zero”, as it marks the beginning of my stem cell journey and enables
my progress to be mapped from there (sigh, back to zero <i style="mso-bidi-font-style: normal;">again</i>). The procedure will take place at the Royal Melbourne
Hospital, not Peter Mac, which in a way I am grateful for, because even though
it’s still a hospital, at least it’s a change of scenery (although I haven’t
sampled the food yet).<br />
<div class="MsoNormal">
There’s a number of possible outcomes from the
PET. That the cancer has barely grown or grown a little bit, that it has grown
significantly, or that it has shrunk. The last two outcomes are very unlikely, so the doctors are assuming that it will only have grown a bit, if at all. If
this is the case, then the transplant will go ahead as planned in late July.
I’m now approaching three months since my autograft, which is the
minimum amount of time my body needs (to recover from the first transplant) before it can go into the allograft.</div>
<div class="MsoNormal">
It is the plan that my allograft will be followed by some
radiotherapy. The possibility of having radiotherapy before the transplant has
been ruled out. This is because the radiotherapy dose would have to be reduced
in order to protect my organs going into the transplant, and if it is reduced,
it will make little impact. So pointless, really.</div>
<div class="MsoNormal">
<span lang="EN-US">I’m dealing with my situation a lot better
than when I first found out about the relapse, although I do find myself
tearing up unexpectedly on odd occasions. When I first found out I was so
shocked and saddened I didn’t know how I was going to cope. But as I said
before, life has to go on, and it has, and I’ve been enjoying it. If I was
watching someone else go through what I am going through, I would probably
wonder how they have not collapsed in a heap. But it's totally different when it happens to you. If anything, it makes <i style="mso-bidi-font-style: normal;">living</i>
more important. </span></div>
<div class="MsoNormal">
<span lang="EN-US">And of course, there are other things going
on in my life that are completely non-cancer-related that are also worth reporting.
I’ve had several weeks away from the hospital now, and I took the break as a
good opportunity to do what I love best: travel. So I went and visited the one
state in Australia I had never been to: Western Australia. It was an epic,
week-long tour of South-Western Australia, and I can now say I am in love and
would happily move there for a year or two. I have never felt so relaxed in a capital
city as I did in Perth, and I do like the idea of being isolated for a little
while. Melbourne has always been my favourite, but having all my treatment here has taken away the rose-coloured glasses, for now.</span></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-xjaQzbAGhdU/T_UfmIlQU6I/AAAAAAAAATM/IJTu2VGnihk/s1600/IMG_1548.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://1.bp.blogspot.com/-xjaQzbAGhdU/T_UfmIlQU6I/AAAAAAAAATM/IJTu2VGnihk/s320/IMG_1548.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Road tripping in WA</td></tr>
</tbody></table>
<div class="MsoNormal">
<span lang="EN-US">Cairns is the next on the list: I have
booked a trip there for me and the amazing Matt who is flying all the way from
the UK. I am beyond excited about this trip and the weeks ahead; it is so nice
to have something to look forward to, rather than dread. At the moment I feel
pretty good; my energy levels aren’t what they used to be and any form of
exercise more strenuous than walking will have my legs dragging and limbs
aching for days, but seven days relaxing by the beach or pool, snorkelling, and
staying overnight amongst the Daintree Rainforest treetops doesn’t sound too
strenuous to me.</span></div>
<br />
So while I'm doing things I've never done before (or never really planned to do, let's be honest), I can also tick 'Climbing a 75-metre Death Tree' off my bucket list (though quietly, I think it was taller than that. Maybe it's grown since they wrote that sign). While I was in WA, I climbed the Bicentennial Tree near Pemberton in the south-west. The ladder I climbed was made up of
thick steel rods, spiraling up the tree to a platform at the very top (yes, with absolutely no safety net or harness whatsoever), which
places you at the top of the forest, with the bushy canopy below you stretching
for miles. It was raining when I did this, meaning the rods were slippery and
it was <i style="mso-bidi-font-style: normal;">very </i>precarious. I also
realized how deconditioned I was, as I started to grow very tired and was well
out of breath by the time I reached the top. But getting to the top was less
than half the battle; getting down proved much more terrifying. Every step down
I was confronted with the dizzying heights I had reached and that a simple slip
could be costly. But even though my hands were ice blocks and my legs were like
jelly, that feeling of my feet hitting the ground was superb. I felt
invincible.<br />
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-DcftjBSDq2o/T_UgZ_J2NRI/AAAAAAAAATk/Hu23RXkfazc/s1600/IMG_1775.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-DcftjBSDq2o/T_UgZ_J2NRI/AAAAAAAAATk/Hu23RXkfazc/s320/IMG_1775.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"The Death Tree"</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-Utx3oPblG6E/T_UgA9gJ_cI/AAAAAAAAATY/YC543o_2_M4/s1600/IMG_1753.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://4.bp.blogspot.com/-Utx3oPblG6E/T_UgA9gJ_cI/AAAAAAAAATY/YC543o_2_M4/s320/IMG_1753.JPG" width="320" /></a></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<div style="text-align: left;">
<span lang="EN-US">So now I have another slippery and
dangerous climb ahead of me - the allograft. There’s the risk that I could die
from climbing it, but the risk of not climbing it is far greater. Anything
could happen along the way, but just like The Death Tree, I just have to focus
on one rung at a time. My aim is to climb to the top, and make it to the
bottom, and once again feel that invincible feeling, but on a whole new level.
It’s a bit of a cheesy metaphor really, but there is no better feeling than
confronting and conquering a fear. </span><br />
So next week I’m going to spend some time in the sunshine of Northern
Queensland. I am also going to celebrate my 30<sup>th</sup> birthday on my
return, which actually happened two months ago but I wasn’t in the best shape
back then. It will be an opportunity to spend time with friends and family who
I have found it so hard to find time for amid the chaos of appointments and
tests and travels. I certainly have had some pretty rotten luck recently, but
it’s nice to know that not everything is doom and gloom. I’m just hoping and
praying that Lady Luck comes to my aid right when I need her the most.</div>
</div>
</div>Anonymoushttp://www.blogger.com/profile/04318690641938839587noreply@blogger.com1