A Life to Celebrate

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.

The empire strikes back

Well, here we are again. As I said last time, I didn’t want to make this blog too regular, as I don’t want to rabbit on about this situation more than necessary. However, something’s come up, re-occurred. You guessed it, it’s only cancer. That bloody rascal. Basically, I had been getting some pain in my left hip for a while (probably since the Italy holiday, which was amazing by the way). It sort of came and went for a few weeks and I was taking random painkillers at first. I thought perhaps it was bad posture from wearing flip-flops, although the little matter of Mr Rhabdomyo- was of course, in the back of my head.

Cam, Annie, Me, Hettie, Dad and Mum at the villa in Italy

One day last month I woke up with near excruciating pain in my hip and could barely walk to the breakfast table. I became all hot, nearly fainted and felt ill. Despite my best efforts, I couldn’t really play this one down in front of my parents. So I was quickly driven to familiar surroundings of Addenbrooke’s and brought straight up to TCT ward C9. I was given some lovely painkillers and quickly scheduled a CT scan. The results of the scan showed that the cancer was indeed evident in my left hipbone and upper femur.

Since then, there has been a bit of faffing around by the doctors/consultants. At first, I was scheduled an operation a couple of weeks ago to put a pin in the bone for support. I had psyched myself up for my first ever general anaesthetic and operation, not eaten anything for 20 hours only to be told after 5pm on the day that the surgeons had “run out of time”. As my Mum and Hettie will attest, I was a bit of grumpy bastard that day, mostly because I was so bloody hungry! It turns out (I think) that them running out of time was actually a blessing in disguise…and not only because I was finally able to enjoy all the unhealthy, greasy pleasure of stuffing a Burger King meal in my face, replenishing my empty stomach. I stayed over at C9 that night and early the following morning had a visit by the orthopaedic consultant; he looked at my CT scan that morning and actually changed his mind on the best course of action for me.

He told me that the best option would be to have a hip (and partial femur) replacement. Thoughts about feeling like an OAP aside, he convinced me that it was a pretty good shout. Now, whilst the CT scan did show the cancer in this new place we hadn’t seen it before, it wasn’t evident anywhere else – i.e. in any organs and couldn’t been seen in my lungs and groin, where it had showed up previously. The op I would have had the previous day potentially would have knocked a fair few of the cancerous cells out of the bone and into the bloodstream, meaning they could make a merry journey round my body and find a new location. Bloody nomads. With the hip replacement, they will be removing all the obvious cancerous material and replacing it with a jazzy new plastic/metal combo. I had an MRI scan later that day, which took ages and was very boring doing bugger all and lying in a big tube for 45 minutes. Nevertheless, it did its job and the results have now been analysed by the Royal Orthopaedic Hospital in Stanmore, London.

The very fact that they are considering a ‘big’ operation like this means that on the whole things are looking better than what I was initially told in October. I was told I had ‘single digit’ months to live. Here we are in almost August. As Larry David would say: prettttyy, pretty good. All things considered anyway. The operation will be in two weeks at Stanmore, rather than Cambridge, as that where the sarcoma bone specialists are located. I will be bed-bound for 5 days and then start physiotherapy for a further 5 before going home and continuing the physio there. I’ll probably be bored so would appreciate the odd visit from mates who are around that area J.

So that’s the update. As an aside, I have mentioned that I want to do some fundraising for some of the charities myself to give my personal thanks for support I have received as well as helping others. Initially I wanted to do a sponsored bike ride or something but with this little reoccurrence that probably isn’t wise as my mobility isn’t at it’s best at the moment and won’t be after the op. However, I’m keen to do other things like ‘share my story’ etc. on their websites and potentially some public speaking (despite the latter having never been something I’ve done a great deal of). My Dad is doing a sponsored 100 mile bike ride next weekend in London for CLIC Sargent; here's my plug Ride London 100 for CLIC Sargent - donate here.

Thank you to everyone for your continued messages of support, it means a lot to my family and me. I will keep you all posted on how things develop in the coming months.

Little update

I just thought I’d do a short update on how things have been and I’m happy to say that I’ve been feeling a hell of a lot better these past couple of months! I’ve had two bouts of radiotherapy and am continuing on my ‘lighter’ chemo and compared to the inpatient stuff this has been a walk in the park. It’s been such a relief to be able to venture out from home more often, resuming an active social life. I’m also physically better and able to get out and about for walks, cycles and sessions at the gym, which in itself is certainly mood lifting (helped along by the fact that we’re now out of the crazy long winter we’ve had!). The amount of stuff that I’ve been able to do and people I’ve seen I would have never imagined possible a few months ago.

To state the obvious, things won’t last as they are for me right now but as long they do I’m going to carry on and cram as much as I can into every day. I’m off on holiday soon to Positano in Italy with the parents, Hettie, Cam and Annie where we’re renting a villa for a week – it’s been a long time coming but am really looking forward to it. After returning from the holiday I hope to do some part time work to prevent any danger of me twiddling my thumbs during weekdays. In terms of other trips in the future, I’d love to go back out to the Rockies in Canada, where I spent some time working in Banff with my friend Ben in between school and uni. I’m not quite sure how/if that’ll pan out and will probably have to work out some sort of health insurance fudge but I don’t think there’s anything major preventing me from doing it.

I don’t want to reel of a massive list of things I’ve got planned but am certainly filling my diary up with various events now to stop any sort of boredom from setting in which could lead to a risk of feeling sorry for myself. As some of you may have noticed I’m keeping a more active presence on facebook now so am sure I’ll be posting a few things on there without turning into one of those people who posts mind-numbingly constant and tedious status’ etc. about their every movement and thought (you know who you are :-P).

Anyway, I’ll wind this up here because I’m in danger of rambling. Hopefully now things have changed for me I’ll be able to see a lot more of many of you in the near future.

Introduction

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 30^th 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 hope this blog has been a useful read in explaining a few things about my situation. I'm looking forward to the coming months in trying to recapture what has been knocked out of me.

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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!