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.
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.
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.
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.
Queen Victoria Night Markets ... I love Melbourne in summer |
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.
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.
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!
Emma O'Brien featured in the November 30 edition of The Age's Melbourne Magazine |
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 Just Dance moves?
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.
It's all good.
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