Tuesday, July 2, 2013

Moxie: Who doesn't love surprises - with colours and a vi...

Moxie: Who doesn't love surprises - with colours and a vi...: 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...

Moxie: Who doesn't love surprises - with colours and a vi...

Moxie: Who doesn't love surprises - with colours and a vi...: 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...

Moxie: Who doesn't love surprises - with colours and a vi...

Moxie: Who doesn't love surprises - with colours and a vi...: 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...

Moxie: Who doesn't love surprises - with colours and a vi...

Moxie: Who doesn't love surprises - with colours and a vi...: 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...

Who doesn't love surprises - with colours and a view?

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 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. 

And my birthday. What a wonderful, endless adventure of loved ones, happy faces, long overdue catch-ups, laughs, craziness, good foo

d and amazing company and SURPRISES. Oh my, so many surprises. 

Let me just talk you through the wonderful little surprise bundle that started a few  days before my actual birthday.

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.
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
3. I was surprised by the arrival of two good friends Cam and Nicola from NSW to my party later that night
4. I got three nights in a penthouse suite overlooking the Melbourne bayside - a surprise from three of my nearest and dearest awesome friends

5. My cousin flew down from London for a week and she showed up at my birthday brunch. Amazing ...

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. 

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.

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).

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. 

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.
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.
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.
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 You Can Conquer Cancer is changing my life. 
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.
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.
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?
More about the MRI later.
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.
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.

Wednesday, May 15, 2013

Yesterday is history, tomorrow is a mystery and today is a gift

I'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.

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.

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.

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.

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.

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.

Easter in Nethercote ... bliss
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.

I've published two blog posts on their behalf since starting with them:



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. 
My cousin and I on Bruny Island, Tasmania

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 The Hangover) at times, but an awesome experience and I am so happy for her. 

Wedding belles
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.

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. 

Sunset in Darwin
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. 

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).

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. 

Last day in Darwin ... beats hospital!
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.

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."

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.

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.

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.

Whoa, heavy, hey. Let's move on. So what's next for me?

Options category no. 1. Chances of happening: extremely/100% likely

Radiotherapy. 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.

Alternative therapies/healing. 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.

Options category two. Chances of happening: hmmm, pretty unlikely

Clinical trial. 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.

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.

Chemo. The doctors 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.

Options category three: Chances of happening: zero or maybe 0.00000001%

Extraterrestrial intervention. I get abducted by aliens and taken to a planet where they have cancer cures. You just never know, right?

Yeah OK maybe I shouldn't joke about this but if "you're not laughing, you're crying". 

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. 

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. 

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. 

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.

Cue blonde jokes
"Where there's life, there's hope." It's not over yet.

Friday, March 22, 2013

Words escape me.

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. 

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. 

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.

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.

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. 

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. 

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. 

So, psychologically, where am I at? I’m upset, obviously. It is not easy being told at 30 years old 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. 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.

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.

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 will 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.

Me and the sound engineer in Royal Melbourne's recording studio
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). 

Me and my cousins (just a small sample)
Oh hai Pete Murray
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.

Thursday, March 7, 2013

So, on a more positive note ...

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.

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.

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.

You can read the lyrics here:

Time in the sun

Like every drip of saline, the days slowly trickle by
Outside my misty window, the city gently sighs
I'm climbing the four walls of this glass cocoon
Somebody please tell me I'll be out of here soon

The city skyline is spattered with rain

I can't wait to feel the sun again
On my face again

We could turn this glass oasis into a holiday for two

Where there's sun and laughter, and plenty of things to do
I've got to get my head from now to then
I will have my time in the sun again
In the sun again

Every day, as I'm bound to this pole

A bit of sunshine drips into my soul
Drips into my soul

Panadol for pina colada

Skyscrapers for the sea
IV for a sun umbrella
This is where I long to be

Panadol for pina colada

Skyscrapers for the sea
Ocean through a stethoscope
This gives hope to me

So, I'll cap this off with a condensed update:

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. 

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. 

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: What if the PET scan isn't clear? What if I run out of options? What if? 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 right now, I feel good. 

I have hair! Though admittedly not as much as my two-year-old cousin Hakeem
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?

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. 

Saturday, February 23, 2013

Every 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).

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.

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.

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!

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.

Sad, but pressing on. Next post will be more positive, I promise. Live for today, plan for tomorrow, love to the fullest.

Thursday, February 7, 2013

100 days ... but who's counting?

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.

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. 

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.

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. 

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.

So in the past three weeks or so in which I haven't wrote, many things have happened. 

1. Slight changes to the game plan, again
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. 

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.

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. 

2. Tell me why I don't like Tuesdays
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.

3. Aussie Day shenaningans
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. 

If you haven't sang karaoke for five hours straight to an empty bar you haven't lived.
Bogan? Me? Nah.
4. Tuesdayitis strikes again ... 
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.
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.
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.

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. 

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 overall size is just more than two centimetres, this is significant shrinkage considering I'd only had two weeks of treatment. HELL YEAH.

5. Back on the 'roids again
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!

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! 

6. Upwards and onwards
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.

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.

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. 

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!


Sunday, January 13, 2013

Time to turn up the radio

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.

So let’s just get the bad news right out of the way, shall we?

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.

But once again, this has been followed by another blow, and it’s a game-changer.

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.

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.

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).

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.

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.

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. (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.)

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.

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.

Then I would wish for a packet of Tim Tams that never runs out. (Just kidding.)

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 I still do have options. 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.

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. 

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. 

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 Bloom, 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. 

Beach House T-shirt for meeee
My lady crush Victoria Legrand, Beach House's lead singer
 Now, from music therapy to radiotherapy (how's that for a segue?).

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.
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 Friday the 13th or Hannibal Lecter from Silence of the Lambs). 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.

The most striking photo of a radiation mask I could find on the internet.
If you want to know the story behind it, go here 
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).

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. 

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.

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. 

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 :)