Andy Gillham, one of the Red Trouser Day Ambassadors discusses his own journey with Bowel Cancer and how lucky he feels that he is still alive.
Andy Gillham a RTD Ambassador, discusses his own Bowel Cancer Journey
Is it possible to regard yourself as being “Lucky” with Cancer?
It feels like an odd question given the nature of Cancer but there are shades of grey in everything and my situation is by no means universally morose, or anything close. The situation is simple enough. Delayed diagnosis means I am saddled with advanced rectal cancer which has spread to other organs and leaves me with a very limited life expectancy which should by all accounts leave me feeling bereft and shouting at the world about its inequities. BUT, that is not at all how I feel. Indeed, I am very much at one with my situation. How do I explain that?
It starts I think with two things: my age; mid-sixties, and a brain, that fortunately didn’t collapse in a heap when I heard I was dying. I take credit for neither of these facts; they just are where we are, but most certainly in their own way have contributed to a level of relative calm after an initial jolt that suggested that planning for Christmas 2019 might not be a good use of time; although, we seem to have sailed past that milestone relatively unscathed. Whether or not I make 2020 remains to be seen, but viewed from just past Midsummer, it seems within range.
I suppose the one thing I’ll allow myself is that I have very consciously sought to see an upside where there is one and for sure whilst saddened by the outcome, I was not “devasted” or “crushed” by hearing about my situation. It’s a hard idea but you have to get on with things as best you can; if not for you, then for your loved ones and friends. Try not to dwell on it; it won’t help.
Has there been fear? Maybe just a touch. My outlook is to live life as fully as I can, while I can, but I do harbour an occasional anxiety about the prospect of experiencing pain in the latter stages of the condition; something that is likely and which I will need help with when the time comes. Its more or less inevitable. I know a bit about pain because of a long-standing relationship with arthritis but this will be different. However, we will handle that as it arises.
On the age thing, I am indeed counting my blessings. Had the diagnosis come through when I was forty-five it would have been a very different mindset that I needed to adopt; less accepting, more proactive, more energetic. At fifty five it would have been difficult, but manageable, at sixty five I was fortunate enough to have provided for the family and I have enjoyed so many good things in a largely blameless life that it would almost be vulgar to complain. So, yes, some good fortune. I mean, not silver spoon in the mouth good fortune; everything we have was earned and paid for of the back of a career involving work: but the dice have broadly fallen my way so I can look my wife in the eye and feel not too guilty about heading out early.
But it’s the brain bit that I think has stood me in particularly good stead; not its raw capacity, which is modest, but simply the way it reacted. And for that I can only thank providence, heredity and a decent diet.
Back when it was fairly clear I had some problems I took the view that I had better brace myself for unwelcome news; after all, Bowel cancer got my father and I have for many years predicted a similar end for myself, based on no real science, but a strong sense of what was to come. So, sure enough, when the lady in the white coat pronounced that I was afflicted, the initial shock was inevitable, but it certainly wasn’t a surprise to learn my prognosis: treatable but inoperable. My wife asked the Oncologist the difficult question; how long? “Oh; twelve to eighteen months” he mused airily. Momentarily she looked like someone had wacked her round the head with a cricket bat but normal service was resumed soon enough and a hasty bucket list was being constructed as we left the hospital to contemplate what the future might hold. I have wanted to have a flight in a Spitfire; but frankly we can do rather more to mutually beneficial effect than the cost of what that luxury.
And so to the point of writing about luck and cancer; unlikely bedfellows that they are.
I hope people who see this might take some comfort, and some ideas, and with those achieve a degree of inner peace that they might otherwise be denied.
But before we get all Pollyanna about the whole thing let’s be clear; this is not a welcome turn of events and there is sadness, frustration and occasionally a need to have a sharp word with my internal consciousness to keep the wheels turning. No regret though. I really don’t think regret is very helpful and the sense of regret if it gets through will be corrosive and become a problem if you let it; so you do have to be a bit strong with yourself from time to time. I’m not suggesting you wander the streets constantly muttering in your beard, but you simply cannot just accept your fate at first hand or you will go under and
that would be a shame, not just for you but for your family and friends who actually feel the real burden, of whom I am bounteously blessed in both regards. So, lucky again?
In fact, philosophically I find myself thinking just how lucky I am in so many ways. If you consider the 7.5 billion or so souls currently alive on Planet Earth, I would say with some confidence that I have lived a more fulfilling life than probably 7.3 billion of them already. Wouldn’t it be a bit churlish to wish for a lot more. When the final balance sheet of life is audited it will be found I did OK.
But you do need to work at it, so what can you do to make sure you retain your spirits? The answer is, a lot, provided you work at looking after yourself, physically and emotionally. And if you are as fortunate as I am to have a wonderfully supportive wife, then, as a partnership you work on things, particularly keeping things as close to “Normal” as possible, because for the most part “Normal” is what we do in life and you would do well to keep that in mind.
There were early decisions to get in some good holidays whilst I am still able and in mid 2019 we did a few short overseas trips to see if the body would stand up to the rigour of travel. We went with understanding friends, and as I was in treatment for much of the time, I had to pace myself quite a bit, but it was definitely the right thing to do. You cannot sit at home all day waiting for the dark moment to come. I’d chalk the holidays up as a success and recommend it.
As said, a big feature of living with Cancer is that the real burden is placed on your spouse/partner who is living with the near certainty that he/she will be bidding farewell in due course and has a life to lead after you’re gone. That is very tough. Again, I am lucky that my wife of nearly forty three years is mentally very robust and wonderfully down to earth about the whole thing and simply, but with huge effort, makes sure that I am looked after, whilst she gets on with a life her own as well. I would have it no other way. It must be very easy to become very inward looking with cancer but you do have to guard against it and include your partner and actively recognise their contribution and strain or he/she could easily drift away and that would be truly tragic.
Part of the approach to dealing with cancer is to make sure you get into sensible routines. It would be all too easy to stay in bed and moan about your lot and that would drive everyone mad. To be clear, I am not bouncing out of bed at 6.30 am each morning for a cold shower and a power walk, but up by 8.30/9.00, breakfast, take your meds, clear the email, do the admin, make a bird box for my daughter, clear out the garage, you get the idea.
It’s also important to give yourself little challenges. Push yourself, but within your capacity, so that what you do is sustainable. I have an exercise bike that I try to use most days. It’s getting harder as the lungs aren’t working so well at the moment and breathlessness is a constant challenge, but do what you can. Not only is it good for you physically but you will feel better mentally for achieving your small goals. So, yes, look after your health, which my sound a bit daft but it’s crucial. You are only in competition with yourself. You don’t need expensive equipment, tables and chairs can provide all the props you need. Then it’s down to you. But whatever you do try not to get bored. Boredom is a horrible feeling and it WILL drag you down. For sure your horizons will likely reduce but there’s lots to do out there. My reading habits have expanded, I have written a sort of memoir, purely for my own benefit. Really, nobody cares except me. Jigsaws have come out that hadn’t seen light of day for many years.
Probably the other key thing to do in this situation and one I would absolutely advise you do and then keep doing, is get your affairs in order. DO not wait, because the Grim Reaper may put in an unwelcome early appearance and catch you by surprise. There is no excuse. The last thing I wanted to have happen is for my wife to be landed not only with the problems of finding herself without me but trying to work out where everything is. So, plan, tidy up, get things sorted. It’s your duty, sorry, but it is. I remember saying to my Oncologist that dying of cancer beats a sudden death car accident because it does allow you to get things sorted out. He seemed puzzled by the analysis but I guess he is a bit focussed on his subject.
We are all well aware of Murphy’s Law of course: that old adage about things that will go wrong if they can and of course Coronavirus is the granddaddy example of Murphy’s Law. As we got to the end of 2019 and my personal lights still appeared to be on, we took a risk and booked some longer term holiday excursions, only for the whole pack of cards to come tumbling down when worldwide travel effectively ceased and we have since been confined to barracks, with myself in particular subject to 12 weeks isolation. That was disappointing, but not destroying. Regroup, do something else. Don’t look for
someone to blame; it’s futile and shouting at a pandemic is not a very constructive response to disappointment.
Just in case you are starting to think that my prescribed oral Morphine has taken me into some sort of dope induced Kafkasque parallel world of the imagination, there have certainly been some challenges. Things simply don’t work the way they did; medically that is. I have lost a lot of weight and with it pretty much any power I might have enjoyed. Sex? No, Appetite? Largely gone, which for a foodie is sad. Red wine, now tastes horrible. Eyesight, not so good. I even had to give up my nice car last week which for a proto-petrolhead was an indignity; but it was MY choice; keep it that way, choice is important. The replacement one litre Hyundai buzz box really doesn’t cut it! But it’s a safer option and keeps me independent for now. So, not all great, but bearable, and other things do replace the previous joys. I have rediscovered an interest in History and read more in that vein than I have in years. You just have to avoid getting lazy.
Oh, and a word to the wise. Unless you are a complete masochist, I strongly suggest you do not become an amateur internet Doctor researching all those things that may or may not go wrong. I do appreciate that curiosity has a role here and it is useful to have an appreciation of what may be happening inside your body but truly, there is so much contradictory and often bogus material out there you could drive yourself mad working out which crackpot to believe! Sadly, once your own specialist has pronounced, and you just maybe have taken a second opinion if you feel that is sensible, then it’s time to settle to the job at hand and make the very best of the time you have available and that, in my view, does not include frantic efforts to dodge the bullet heading your way. Worry and anxiety are not a good way of colouring your remaining days. The one piece of data I have taken to heart is that all the prognosis projections for cancer are by their nature statistical and people do survive. I am already well past the original dropping off point! My chances of surviving five years or more are, apparently, 8%. I’ll take that and work with it.
Another, and maybe for now, the last pearl to cast is that as a result of looking my demise firmly in the mirror each morning I have started to do some work with a relevant charity. There is a small charity associated with the Royal Marsden Hospital in London that raises funds for Bowel cancer Research. Red Trouser Day (RTD, link and details attached) was established a few years back by a friend of mine and I am doing some work with him and his team. The main plank of work, derived from my previous professional career, is a short programme devised to support people suffering with Life Limiting conditions that I built into a way of supporting people like me to help other people like me deal with managing their condition. The aim is to get into a format where we are able to hand it to McMillan Nursing as part of their service. It’s early days but the content is there and we are looking for a “Guinea pig” to try it out on.
I’m also organising a short charity walk under RTD in late August to raise funds to support a research project that is being run in association with the hospital. I’ll not complete the walk since a hundred metres and I’m back on oxygen, but I can still organise. And if that all sounds very right on, believe me, I’m doing it substantially for my own benefit and peace of mind.
I am starting to realise that this is sounding like a Scout guide for the terminally obnoxiously righteous, and that was so not the idea, but I can only speak as I see and hope that there may be a few nuggets in there that help someone.
For many, life change such as this would be accompanied by significant spiritual assistance, usually religious. For me, not so, I have no religion and never had that need, but most certainly I would not decry anyone who receives support from religious belief. You don’t do this stuff alone if you can avoid it.