The text that follows
was written by Alistair before he passed away but he was reticent to publish
because of the new difficulties he faced. However, Alistair agreed that Tony,
Rosalind, Cameron and Hettie may review the words and then publish on his
behalf. This we have done, with only minor edits.
The good, the bad and
the ugly
As I hope you will have heard by now, my hip operation was a
success. It’s only been 6 weeks since the surgery and I’m now pretty nifty at
walking (albeit with my ‘Buzz Light-year’ outfit, as Cam calls it aka my leg
brace). Considering the size of the material they took out, the replacement (a
titanium alloy) seems to be working pretty well. I just have to wait for the
muscle to strengthen and grow to it and gradually I will be able to gain more
normal mobility. I’ve just started driving again (got myself a new car), which
has been a relief to get a sense of freedom back. I was informed about the
Motability scheme by our CLIC Sargent social worker, Christine, and essentially
have got the car for free. Pretty good. It’s an automatic, which is more
suitable because it means I don’t have to use my left (operated) leg for
driving.
So, the bad news: a few weeks ago I was told that the
results of a recent CT scan showed up some abnormalities in my chest and back
area. Hearing this so soon after having the op is obviously pretty shite. I’d
been getting lower back pain for a short while and also a tad of wheeziness. As
soon as I noticed the symptoms, I’d guessed what it probably was so the news
being rubber-stamped wasn’t really a massive surprise. The scan showed that
there are a number of new tumours, the two most obvious being on near one of my
spinal vertebrae, accounting for my back pain and another in the centre of the
lungs, hence the wheeziness. There’s also more cancer stuff occurring near my
right shoulder. When I was first fully diagnosed almost a year ago now, they
said that the cancer was an aggressive bastard. They weren’t wrong.
Unfortunately, despite how many times I might tell it to ‘fuck off’ in my own
mind, it doesn’t seem like my internal aggression can meet the competition.
My parents, Cam and I had a meeting with my oncologist Dr
Hatcher to discuss the results and where we go from here. I have chosen to have
further inpatient chemo, involving a combination of a drug called ifosfamide
and another called etoposide. It will be more rough than the ‘soft-core’
outpatient chemo I’ve been on since April as an outpatient but hopefully not
quite as bad as the original chemo mix back when this all kicked off. Having
recently experienced the discomfort/sleep deprivation of being on a holding ward at Ipswich, , having a few days of
treatment on the TCT ward at Addenbrookes doesn’t seem so bad!
I’ve also had five sessions of targeted radiotherapy on the
tumour near the vertebrae. This is the one that has been giving me the most
pain so fingers crossed it helps with the situation. I’ll be having at least
six sessions of the new inpatient chemo regime, which will mean being in
hospital for about three or four days at a time every three weeks. I’m very
keen to keep doing things as much as possible and doubt that the side effects
will be as rough as when I started my introduction to the world of chemo last
October.
With this recent stream of news, I’ve been made to examine
my prospects for the future. I like to think that I’m pretty realistic about my
diagnosis, wanting to know as much information as possible as to what’s going
on. It’s knowing information, realising that all this bother is due to a
tearaway piece of DNA in a cell whose life has gone off the rails, corrupting
other innocent cells around my body. Cancer is like a teenager with an ASBO.
Information and humour are two of the things which, for me, help take away the
power that cancer has, even just the power of the word itself.
I’m obviously going to listen carefully to what the doctors
say and take heed of their advice to get the maximum I can out of the rest of
my time. I’ve only just had my first treatment of the ‘new’ chemo but it seems
to have relieved some of my symptoms already, which is pretty fast work. Of
course, I must remind myself, as well as those around me, that this is only
temporary.
In terms of goals for the future, I’d love to move to London
for a while in the near future but of course this idea is all health dependent.
Without further slagging off Ipswich, London was where I saw myself living in
my twenties and it’s not somewhere I ever feel bored – there’s too much to do.
I’m also very keen to do some more travelling when possible. Top of my list at
the moment would be a visit to Hong Kong and South-East Asia over the winter.
Canada’s now off the cards because unless I was skiing (too optimistic despite
the wonders of the surgery), I don’t fancy putting up with the severe weather
over the winter. We’ll see. If I have to scale-back these dreams then so-be-it,
I’d definitely like some sort of escape from the long nights ahead.
I’ll leave this end paragraph for a little plug: In case you
haven’t read it, I recently wrote a separate blog with regard to why drugs
should be decriminalised. I also explore the use of medicinal cannabis. The UK
is behind the curve when it comes to many other western nations and prescribed
medicinal cannabis; I can’t say I feel guilty about using something that makes
me feel better. The blog’s quite hefty at 5000-odd words but I hope you’ll have
a read at some point.
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We conclude the blog
with the statement Alistair prepared and asked Cameron to read at his funeral.
For the purposes of the funeral service we gave it the title “As I See It”.
It would probably be a bit weird if over the course of this
cancer malarkey that I didn’t ponder a few questions in respects of my own
existence and philosophy. It’s not something people really do these
days…they’re too busy. I’m not religious but equally I’ve always been
interested in matters of religion and God, after all it affects quite a lot of
stuff that goes on in the world.I tend to find the content of most religions
either funny or scary. It’s not for me but that’s a conclusion that I’ve
thought long and hard about. Believer or non-believer, I think it’s important to understand the reasoning behind
why you think what you think.
For me the point and joy of life comes down to pretty basic
things: friends, family and love. Some people say that God is synonymous with
love. If you’ll excuse the cheesy 80s ballad reference, I believe in the power
of love. If God represents the powerful human connection you feel between
friends, family and your partner, then that’s what I believe in. I like the concept of atonement,
literally at-one-ment, being ‘at one’ with things, One Love.…it’s what Bob
Marley was getting at. In fact, atonement is a concept common to pretty much
all religions. It’s something we all seek, whether we’re aware that we’re
seeking it or not. Jews have the scapegoat…pop all of your sins on the little
goat and you’re atoned with God for a while…until the sins build up again and
then repeat. Christians have the same principle except Jesus is playing the
role of the goat, plus he only had to die once, saving a lot of time,
bother…..and goats. Buddhists have the concept of Nirvana…essentially making
your soul disappear into the oneness of nature. Despite thinking that we’re
apart from ‘the animals’, humans are of course part of the animal kingdom. When
self-consciousness developed in our brains we have felt the apartness from the
rest of nature and seek to recapture it. Now, the entry-level philosophising
I’m doing is getting a bit heavy but expressing it here is one of the ways that
that I’m dealing with things and getting my head around the situation.
I do not believe in a traditional ‘theistic’ God. I don’t
believe in heaven or hell. I am not judged by my actions by a beardy chap who
sits in the sky watching your every move as if life is Big Brother with 7
billion contestants.
I never thought I’d be writing these words, let alone having
them read out by someone else. The human body is from time to time a bastard to
us. In my case it’s been a colossal bastard to me at a time when I was only
starting to take my steps into the ‘real world’ post education.
I’d love to be able to say what I would have done with my
life if this biological discrepancy hadn’t happened. Career-wise I’d love to
have got more involved with the renewable energy sector…the country really
needs to get its arse in gear on the energy front and I would have loved to
have been a small part of that. I find
it a great source of frustration that I’m kicking the bucket at this point in
my life, chiefly because I feel I haven’t given enough back to the world yet. I
don’t want to sound like a pretentious do-gooder but I haven’t had too long in
the ‘real world’, outside of the education system. Up until 2011, I was a
mostly a ‘taker’, sucking up education and the food and money of my parents
until I could be independent earning a reasonable salary on my own. I was just
starting out in the real world and boom! This bastard comes along and screws
things up.
Death isn’t something young people usually think about…it’s
also often said that it’s the ‘last taboo’ in the 21st century, particularly in
western countries. It shouldn’t be. It happens to all of us and is kind of a
big deal so we should at least be able to talk about it properly. In our
modern, appearance-obsessed world, where the general population are not only
living longer but also looking or seeking to look younger than their years,
many people are under the illusion of an eternal youth. If you get real about
death, I reckon it’s easier to deal with. Not easy, but easier. The moment of
death (assuming pain is controlled) doesn’t even sound that bad. From what science knows, there’s a huge
release of dopamine in the brain just before it bows out, which will feel like
you’re on a happy blissful high. Seems like a nice little parting gift of the
body.
Now, using up my allotment of clichés, it’s true to say that
everyone’s time on earth is borrowed. Since my diagnosis and particularly after
the worst of the chemo was over, I’ve done my best to make the most of the
borrowed time and grab each day by the bollocks. I’ve probably spent too much
of my life watching and reading frivolous things on the Internet…but don’t we
all? Trying to rationalise what has
happened to me was never going to be an easy process. However, I have found a
certain solace in trying to put things in perspective. Until this happened to
me I think I’ve lived a bloody fortunate life: I’ve got great supportive and
loving parents, brother, friends, family and girlfriend. I’ve also received a
fantastic education, having brilliant years at school and university. If I was
religious, I might say I was blessed, but I’m not so I won’t. I happen to have
had the statistical luck of being born to a middle-class family in a western
country. It should go without saying that the vast, vast majority of people in
the world are less fortunate than me, having to deal with shitty childhoods,
abuse, malnourishment and a lack of care and love, the kind of which I have
been so lucky to have received. Up until a mysterious lump appeared on my foot
in 2012, it would be accurate to say I was dealt a pretty good hand.
A thought process that has helped me is appreciating the
wonder of life in general: travelling, seeing the world, watching David
Attenborough documentaries – showing how life can be continuously astounding.
I’ve found it helpful to know why we, as humans, are here at all. The chance of
life having evolved on earth, the wonder of natural selection, and the chance
of not being born in a rubbish time and place where they still cut people’s
heads off for blasphemy is pretty damn remote. Relatively, most of us have
‘lucked-out’. Life is beautiful, amazing, and profound. It is also cruel, ugly
and unjust. Each one of us will experience all these different feelings about
life at some point.
I’ve tried not to be angry at what has happened to me. I
have been angry but it hasn’t gotten me anywhere. When people are looking to
say something comforting or to try and comprehend a difficult subject, they
often trot out the rather bland phrase ‘everything happens for a reason’. On a
pure scientific level, this is true. On a metaphorical or philosophical level
it doesn’t make sense to me. There is no ‘grand plan’, no destiny in our lives;
the things that happen in our lives, what we become, is all a mix of
statistical chance, our own desires and the desires of those around us. I don’t
think this makes life feel any less inspiring and magical. If everything
happens for a reason, then the reason behind me getting cancer is kind of a
dickish one. In a similar vein, when people say ‘God moves in mysterious ways’,
I think we are patronising ourselves, implying we are too inferior to
understand why horrible things happen…or why God made them happen. If there is
a God who decides to dole out cancer on a whim, then quite frankly I don’t want
to be mates with him. The reasons tragedies happen are either because of people
and their actions or quite simply bad luck. It’s as simple as that. It’s not
fair but life doesn’t owe us fairness but I think we owe fairness to each
other.
So, as you know, the chance of me getting cancer in my foot
was pretty damn rare. Part of the way I have dealt with what has happened is by
understanding the biology behind it. The reason that we’re here at all is
because of random changes in DNA. The random changes that happened to be
successful have hung around resulting in us, as we are today. Random changes in
DNA also result in cancers popping up from time to time.
Bodies can do many things; they’re pretty amazing. One of
the things that all do at some point is go wrong. Not so amazing. At my age, I
didn’t expect mine to go wrong in quite the spectacular fashion in which it has.
As you go about day-to-day life it can be easy to fall into the trap of
forgetting that you and your body are only temporary features in the world. The
daily routine of reluctantly getting up as the alarm goes off, the begrudging
commute, the grind at work and the evening wind-down can seem like they’ll go
on forever…..caught in an infinite loop.
Life is a bloody fantastic thing. Since receiving the shitty
news back in October 2012 and having got through the rough initial chemo, I’ve
tried my best to make the most of my time left, to squeeze every last bit out
of each day, to do as many things as possible, see people, places and get every
last laugh out of the day. Cancer is a bastard. Death is inevitable. But that
doesn’t mean that I’m not entitled to laugh at it in certain circumstances; for
me it makes it easier – it takes away its power.
In just a few sentences last year my hopes, my dreams for
the future, the clichés of ‘settling down’, having kids were all dashed. Life
is not perfect, eh. From people that have nothing and grow up in absolute
poverty, struggling to feed themselves to those ‘Made In Chelsea’ types born
with a silver spoon in their mouth, perfect lives do not exist. If they appear
to then it’s a lie, a front – everyone has their problems to deal with, whether
it’s their family, friends, relationships, work, physical or mental health. For
all sorts of reasons life is sometimes just shit, for some it’s much more shit
than others and that might seem unfair. Fairness is not a part of biology,
life, and evolution. However, the fact that life can be shit means that the
moments when it’s not are all the more enjoyable.
NHS
I feel incredibly grateful and fortunate to have been born
in this country. Not only because of the reasons I outlined earlier but also
because of the NHS. The NHS is far from perfect and certainly has its flaws and
problems but I am so glad it’s there. I think the principle of it being free at
the point of need, regardless of your social or economic status, is one of the finest
examples of human compassion. You might think I’m over-doing it here but I
constantly feel grateful that we have a moral approach to healthcare in this
country. Basically I’m glad I’m not an American. The USA is brilliant in many
ways but healthcare is not of one them…unless you’re rich of course, in that
case you get the best healthcare in the world. If in an alternate universe my
family were American and exactly the same thing happened to me, the chances are
that the treatment would have resulted in us being broke. In such a right-wing
country, I’ve heard many Americans say that if you can’t afford treatment then
you don’t deserve it. God bless America, eh.
The NHS should be protected, cherished and improved. It has
been absolutely wonderful to me and I can’t thank all the doctors, nurses and
other staff enough in everything they’ve done. I’ve also had an easier ride of
things thanks to the Teenage Cancer Trust and the valuable support and
friendship of other young cancer patients I’ve met through Teenage Cancer
Trust.
I’ve had some fantastic, hilarious and brilliant moments
since my diagnosis and have tried not to let a silly little thing such as
cancer get in the way of that.
