So I wanted to write something about what I’ve been going through the last six months since I was diagnosed with a cancerous tumour, which goes by the wonderfully long and convoluted name of alveolar rhabdomyosarcoma.
There it is. Ugly bastard isn’t it? Although on the other
hand, it does look like it could be one of those trippy magic eye puzzles.
I’ve contemplated on writing about what been going on many
times but have always come unstuck: Who exactly am I writing for? Am I
expressing exactly what I want? Do I need to censor myself? How much should I
reveal? Cancer is obviously an extremely difficult subject and almost everyone
will be personally affected by it at some point in their lives, whether through
getting it themselves or a close family member. It’s not the sort of subject
that is ever going to be easy to talk about (especially when having to say the
same things multiple times over) but I felt it was important to get something
out there about my situation, particularly for friends and family that I may
not have spoken to much about my situation.
I’ve revealed bits and pieces about my attitude to the
cancer and my treatment to some of you; others you may have just heard it
second hand/on the grapevine. I figured if I did a big blog post on the issue I
could clear up a few things for people and hopefully allay some worries (of
others and mine).
I was hesitant to put anything on facebook about this
originally because I didn’t want my timeline to become dominated by messages of
sympathy etc. so up until now have been keeping a pretty low profile. Now,
however, after living with the diagnosis for this time I figured if there are a
few references to it online – so what? The cancer and its treatment has
dominated my real life for what seems like a long time now so I may as well put
out some decent thoughts on the issue for everyone to read online if they wish.
So let’s
get cracking shall we? First a little about the cancer itself and how it came about:
The type of cancer is incredibly rare –the chances of someone
my age getting it are in excess of one in a million. If I knew I was capable of
getting rare odds like that, I would have played the lottery a lot more! It
started as a soft-tissue tumour (sarcoma) in my right foot – I mean who has ever heard of foot cancer,
seriously?! When I first found out there was a chance that it was
cancerous, it seemed laughable and ridiculous just because it seemed such an
absurd place to get it…it’s not one of your mainstream cancers that get all the
headlines, that’s for sure.
I’d noticed some mild discomfort in my right foot in around
January 2012 which I’d feel occasionally after running or playing squash. It
wasn’t really painful and seemed pretty temperamental so after the GP’s
recommendation to get an inner sole for my trainer, I didn’t give it much more
thought. Fast forward to June and partially as a result of a fall (helped along
nicely by alcohol) one night out in Bournemouth, my foot was in quite severe
pain. X-rays at the A & E showed there to be no broken bones but after a
few weeks of being on crutches and it still being painful to walk on I had a
further X-ray back at Ipswich which showed there was indeed a small break. On
hearing this, I thought that was going to be the end of the matter and it would
heal in its own time.
What I thought was just the ‘swelling’ showed no signs of
calming down in the subsequent weeks and after an almost two month wait for an
ultrasound, followed quickly by an MRI scan I finally heard that ‘C word’ for
the first time – “So I take it skiing’s off the agenda for this year?” was my first
response to the consultant, not quite being able to take on board the gravity
of it all.
A quickly scheduled subsequent visit to The Royal
Orthopaedic Hospital in Birmingham for a biopsy was next on the agenda and
after a few days I received a phone call rubber-stamping the news. They told me
the specific name of the cancer, which at the time went in one ear and out the
other – rhabdomyosarcoma isn’t a particularly catchy name, is it?
The 30th October 2012 was my first visit to Addenbrooke’s
Hospital in Cambridge; little did I know then just how familiar I’d be getting
with the surroundings. I was told by the lead oncologist Dr Hatcher, who
specialises in sarcomas, that this rhabdomyosarcoma of mine was a particularly
aggressive type of cancer.
Before I walked into the clinic that day I had tried to
persuade myself that the cancer wasn’t (or couldn’t have actually been that
bigger deal)…after all it was in my foot for goodness sake, which is miles from
any of the important organs in my torso – and hey, even if it meant I lost the
foot then so be it. Amputation was the worst case scenario I had prepared
myself for and I didn’t think that would be so bad, it could even be a bit of a
laugh (anyone who’s seen any of Adam Hills’ stand-up or The Last Leg on channel
4 might know what I mean).
I was quickly scheduled CT and MRI scans that afternoon to
check whether the cancer had grown or spread. Shortly afterwards I was shown to
the Teenage Cancer Trust ward, where I would be staying for the duration of my
chemotherapy sessions. The ward itself is amazing and blew out of the water any
expectations I had about staying in hospital. Despite me being incredibly
unlucky in having my body go tits up in rather a massive fashion, I have felt
very lucky to have been treated in such a wonderful environment with such
brilliant caring staff and wonderful facilities. Check out this link for a few
pics of what it’s like - http://www.teenagecancertrust.org/what-we-do/specialist-services/units/addenbrookes-hospital/.
I don’t know how people like Dr Hatcher can do the job they
do; I have incredible admiration for her and all the medical staff that I have
come to be acquainted with at Addenbrooke’s. The world is a much better place
for having such incredible people, whose selflessness, compassion and devotion
means that what they do is so much more than just a job.
The following day, Dr Hatcher came to visit me on the ward.
After some initial small talk, I got on with it and asked about the results of
the scans. The cancer had indeed spread. To my lungs and groin. It had gotten
into the lymph system. Having limited myself to internet browsing about cancer,
not wanting to freak myself out unduly, I asked what that meant in terms of the
so-called ‘stages’ you hear about with cancer. I was and am a Stage 4. There is
no Stage 5.
The word terminal was never used but it didn’t take me long
to make the leap. After the initial shock had died down, I asked the inevitable
question – ‘how long?’. It all felt unreal, as if it was happening to someone
else and I was just there spectating. It still doesn’t feel real looking back
on it after five months. The answer to that question, of course, has fair
amount of estimation built in due to the rareness of the cancer as they don’t
have many cases to go off in the past, particularly for someone of my age. At
first, I was told ‘months’, which was suitably vague. Technically, all of us
only have ‘months’ to live, haha.
After a bit more probing, I found out that it of course it
depended on the effectiveness of the treatment on which I was about to embark
and they didn’t know how my body would respond but was told ‘single digit’
months is likely, maybe a year if I’m lucky. Writing now in March 2013, and
having finished the ‘intense’ chemotherapy and had more recent scans I can say
the tumours have responded extremely well to the treatment I’ve received so far
but short of becoming a medical miracle, the cancer will come back soon. Accepting
the inevitability of what’s coming my way was never going be easy.
So the chemotherapy was to start that same afternoon I found
out the results of the scans. I was put on a cocktail of chemo drugs known as
IVADO – a very intense chemo regime, which meant that I had to have it as an
inpatient for three/four days at a time. I’ve now completed six three week
cycles of this. And thank fuck for that!
The good news is that the original tumour and secondaries in
my lungs and groin have reduced significantly. A couple of weeks after the
first treatment I was even able to get my right foot back in to a normal shoe
again! This was a massive relief as since the time of the fall in Bournemouth,
I had been rocking a rather trendy sock and sandal combo on my right foot, as
due to the size of my foot I could not physically fit my foot into a matching
shoe. I certainly got a few funny looks when out and about!
The chemo truly knocked me for six. The first couple of
cycles were rough whilst I was in hospital but I seemed to get over it by the
second week. However, each cycle subsequent to that hit me harder each time.
The combo of various infections, mouth ulcers, loss of appetite, loss of taste,
extreme fatigue, numb fingers, loss of co-ordination and the mental fog of
‘chemo brain’ didn’t really make for a laugh a minute.
As such, despite my own protests from the outset at wanting
to avoid doing this at all costs, I went to ground and have been far from
adequate in replying to messages/calls and being sociable. I apologise for this
but in the midst of how I was feeling I found it very difficult to put up the
front that I wanted. Obviously messages of support are greatly appreciated; I
can only say I will endeavour to do better in the coming months now that I’m
moving on to a new chapter of my treatment in the form of radiotherapy and a
‘lighter’ chemo (mostly taken as tablets) which so far has been going very
well.
Since starting treatment I have been on sick leave from
work. I found the idea of returning to work a bit of a catch 22 because I have
missed the routine; it’s almost certainly what keeps people sane. The side
effects of the chemo have meant that I’ve been bedbound for long periods,
combined with making me anxious and withdrawing into myself. Not too long ago a
recent graduate, I have found it tough to accept that my plans of establishing
myself more in the career world and ideally moving to London have gone up in
smoke. Despite Ipswich’s many charms, it is very much (in my humble opinion)
still a rather rectally derived town and not really where I wanted to be for
longer than necessary. However, these are the cards that I’ve been dealt so
when it’s possible for me to get out and about and away from home it’s always
welcome.
The question of ‘why’ has been a nagging one, not only for
me but also those close to me. The truth is that there is no satisfactory
answer as to why this has happened to me – philosophically or in my case,
medically. Rhabdomyosarcoma is one of those unexplained cancers for which there
is no obvious cause; it could have been some random subatomic particle whizzing
through space which happened to knock into bit of DNA in my foot one day and
made it go a bit mental (aka cancerous) for all I know. It’s not something I’ve
brought on myself. At the end of the day the human body is inadequate and
occasionally goes ‘wrong’.
Trying to get my head around exactly what is and has been
going on is still an on-going process; I thought I had it down within a few
days of getting the prognosis but was naive when it came to what I was in for
with the treatment and all the further disruption brought to my life that goes
along with it. There will no doubt be days when I’m not feeling great but
that’s fine as long as I have days when I'm feeling on top too. I feel that now
I had the supposed worst of the intense treatment over that I should have more
of the latter coming my way. I’ve got a fair bit planned in the near future
including a holiday in Italy, going to Queens and Wimbledon for the tennis and
seeing Eric Clapton at the Albert Hall to name just a few. I’m incredibly lucky
to have such wonderful family and friends and am very grateful for all of your
support during this time.
***
I know quite a few of you have expressed a desire to
fundraise at some point in the future – The Teenage Cancer Trust (TCT) and Clic
Sargent (who have provided local support for myself and my family) are
definitely good shouts, as of course is Cancer Research UK and Sarcoma UK, who
help fund research into types of sarcoma. The TCT is an amazing charity and the
tireless work done by the organisation and the many people who fundraise for it
is truly inspiring. Without a shadow of a doubt, the work and money that has
gone into creating the specialist wards around the county make the horrible
experience of cancer for teenagers and young people significantly easier than
it would otherwise be (it certainly has done for me!).
One person in particular who has contributed to the
fundraising efforts of the TCT is my brother Cam, who spent an awful lot of his
spare time in organising a non-uniform day and fashion show at his school.
Ticket sales combined with selling TCT merchandise raised over £5,500! I was
able to attend the fashion show and when seeing all Cam’s (and his friends’) efforts
pay off I was overwhelmed with pride. Well done mate!
