Chapter 30 – One Year On (and counting)

One Year On
I write this around twelve months from the day I went home from Southampton General Hospital, having spent the night – my last night – in relative luxury in a plush sideroom on the Teenage and Young Adult Ward.

Why can't all hospital beds be like this?

It's an odd feeling, really, writing another chapter after so long. It's almost as if the whole thing was just a dream and I've spent the year waking up from it. And I'm loathe to call this, as first planned, an Epilogue. I don't know what might be around the corner. This is not pessimism, just the plain truth as none of us know what lies in store and I would hate to tempt fate by saying this is my final blog chapter – just in case it isn't.

But apart from being pumped full of blood and platelets during the latter end of February/the beginning of March last year in order to bring my blood levels back up to a reasonably safe and sustainable level again, I am happy to say that my recovery has been almost complete. I say almost, as my hearing has not recovered (more of which later), my revised plumbing means I have to plan ahead a bit more, there are times when I am convinced that I have a huge tumour growing inside me again, and I always breathe a sigh of relief when I am given the thumbs up at my three-monthly check-ups, despite the fact that should the cancer return it would almost certainly happen quicker than the three month gap in between those check-ups.

Getting air in my lungs and hair on my head

I am a lucky chap: although there is, and never was, a good time to have cancer, the chances of survival are higher now than ever before. Treatments are more sophisticated and although chemo and radiotherapy are still the norm from what I understand about research into immunology it won't be very long before the job of tackling cancer won't be the unpleasant, dangerous and scatter-gun business it is at the moment. I know full well that had this happened to me as little as ten years ago my chances of survival would have been dire compared with today.

Reviewing the situation as Fagin

Looking back I know the whole experience – from my admittance to A&E at the end of September 2014 to finally going home in the middle of February 2015 – was gruelling and there were times, I now understand, when many people had written me off. If I am honest there were times when I had written myself off. What I also know now is that the chemo took its toll on my body: at my last check up at the beginning of January, for instance, I was a little surprised to hear that my platelets are still hovering below 150, the level at which most 'normal' people's count would be considered to be too low for comfort. I do bruise a bit more easily and I have occasional spontaneous nosebleeds. My real fear is that, should the dreaded disease return, the old body might not survive any more aggressive treatment, battered as it is from the first lot. So I live in the constant hope that I never have to put it to the test.

A new kind of normality
One of the MacMillan team at Southampton and a Lymphoma specialist, asked me back in March last year how I was getting on with my 'new kind of normality'; she was also the one who told me that 'if I survived the treatment I would survive the cancer'. She has the knack of summing things up very nicely and on the odd occasions when I have seen her since last February she never fails to floor me. For instance it was at Christmas that I popped in to say hello and she told me that it was safe to say that, having survived the first six months in all likelihood I was probably past the point of Burkitts returning any time soon (she had never seen a relapse after six months, the first two or three being the most likely). Now she tells me. Thank God she didn't drop that one on me this time last year.

Enjoying a spring BBQ with Tom

My new kind of normality means accepting that my hearing – or at least the way I hear (subtle difference) is never going to be the same again. Annoying rather than anything else, I constantly feel as though I have immersed my head in water and my left ear is still full of water, making hearing a bit muffled and, more importantly, I cannot equalise the pressure in that ear. Despite several (private) consultations, hearing and pressure tests, an MRI scan and having a gromit fitted, the problem is still there and unlikely to go away. I shall have to learn to live with it, I guess. It makes singing difficult as I can't seem to pitch properly, acting is a challenge as my voice sounds very different to how it used to (I'm not sure if I am shouting), and conversations in noisy pubs are nigh on impossible.

Fab fun in Peter Gordon's comedy Third Week in August

I understand from a friend that there is a recognised disorder known as 'chemo-deafness' and having researched this a little it may be that my deafness is not the result of the chemotherapy but possibly the strong diuretic pills, steroids or antibiotics I also had. Whatever it is, as I say, it's annoying but a small price to pay.

My only other legacy is, shall we say, an unreliability in the plumbing department. Not incontinence but I have to plan my movements (literally) and be careful about what I drink. Too much of our local brewery's real ale and I suffer. According to someone who has survived bowel cancer this is a common problem. I suppose it is inevitable that the removal of several inches of intestine and being pumped full of toxic chemicals could well have a long term effect on anyone's digestion. Again, a small price to pay.

Otherwise, my health generally is very good and my fitness has returned. I can walk for miles as before and I have taken to cycling regularly again. I happily doze off in front of the TV but this probably has more to say about the state of some of our viewing than any chronic tiredness.

It's back – and curly!?

Another curious oddity – when my hair grew back it was incredibly curly for the first few months. This is not unusual either, apparently. I've heard tales of straight hair coming back curly, curly hair coming back straight or even reappearing a different colour.

All in all, I feel good – I sleep well, I eat well, my weight is stable at the same level as before I was ill and I am reasonably fit.

Work/life balance
In the middle of my hospitalisation I promised myself that if I got out of it alive, I would seriously consider an early(ish) retirement, or at least revisit my work/life balance in order to never put off those plans on the assumption that 'there's always tomorrow'. Had my illness occurred five years earlier this would have been much more difficult, as I was still running my own business, paying off a mortgage on a French property and had three children at university. So the overheads, as well as the stress levels, were much higher; whoever it was up there who decided on the timing of My Little Problem, thanks for that at least.

Walking the dog (or in this case, carrying the dog past cows)

My employers were nothing short of totally supportive – for keeping my job open on full pay for the five months in hospital; for such a generous donation to my fundraising for The Lymphoma Association for understanding and accepting my request to cut my hours on my return in the spring; then to allow me, from 1st January this year, to go freelance and carry out my work for them on a self-employed basis so I can pursue other projects.

'If I Were Not Upon The Stage'
If I had my time over again I would probably flip the coin and instead of going to art college to study graphic design I would take my chances as an impoverished actor. The 70s provided more opportunities for people to get into drama school, even if they weren't guaranteed a job at the end of it. For me, at a time when I had no commitments to speak of, it really was a toss up between art college or the stage. But I made my choice at the time and have enjoyed a fulfilling career in design and over the years played a huge variety of stage roles I would probably have never landed on the professional circuit.

A gong – at last!

I have had the pleasure of appearing in (getting on for) a hundred productions with three different theatre groups and played some amazing characters like Fagin in Oliver! (revisited last year for the local choir), Toad in Wind in the Willows, and in separate productions thirty years apart, both Tom Jones and Captain Fitzpatrick in Tom Jones. For some reason I am often cast as eccentric or weirdo characters and in the past twelve months, since finishing my treatment, have appeared as Pam Ayres (in drag), a German explosives expert, Herr Winklekopf in Lord Arthur Savile's Crime and as Neville (the Nerd) in Peter Gordon's hilarious Third Week in August for which I was honoured to receive the award of 'Best Actor in a Comedy' at the local Curtain Call Awards, sponsored and run by The Daily Echo. Having been nominated three times in the past, and not won, and unable to attend last year's black tie awards dinner in Southampton (I was still in clink), I was dead chuffed to attend – and win – this year and spend a happy evening with my fellow thespians at a very noisy ceremony, most of which I couldn't hear.

Jumping Mental Hurdles
Those beady eyed readers amongst you will remember that when I got the first inkling of my impending illness I was in a caravan on the Gower Peninsula, busy learning lines for one of the most challenging roles I have ever been cast in – that of An Ill Bloke in a retirement home. My character, John Cooper, is attempting to come to terms with the onset of old age whilst facing the prospect of increased fragility, incontinence and senility with humour and banter. Rather ironic, really, considering the outcome: the play was first postponed, then nearly went ahead without me and was finally shelved and the ticket money returned.

Playing an Ill Bloke in A Month of Sundays. A milestone.

So it was a bit of a mental hurdle for me when it was suggested to get the production of A Month of Sundays by Bob Larbey (of The Good Life and Ever Decreasing Circles fame) back onto the stage with the original cast and crew. Just over a week ago I was hobbling around the stage at Cheriton pretending to be as ill as I really was some 16 months ago and as many kilos lighter – but this time at least I didn't have the indignity of being bald. You might say it was an extreme form of method acting (or masochism perhaps) but I jumped the first mental hurdle of returning to the stage to start rehearsing this particularly tricky and challenging play in December, and having re-learnt all those lines, I was delighted that the play was a great success. Our audiences were with us all the way and laughed, nodded, squirmed and cried throughout; you could have heard a pin drop at some of the more poignant parts, only seconds after roaring with laughter. I am so pleased that we revisited this production and that I didn't tempt providence!

On the opening night there were five important people in the audience: four of them nurses from D3, the ward on which I spent nearly all of my time in Southampton General (no less than seven of them turned up to cheer me on as Neville last June!) and Steve Wishart, a fellow Burketts sufferer who was in D3 at the same time as me and who is also currently enjoying a second chance at life. It meant so much to know they were there supporting me.

A school reunion – sadly one of these guys didn't make it to Christmas.

There's a Lot of It About
Since September 2014, when I was first diagnosed with cancer, I know of no less than nine friends who have also been diagnosed with some form of the Big C. Two of them (both old school friends of the same age as me) have died in the last year. One is in remission and the others are all still undergoing treatment. Even though I have been there and done it, I find I cannot be of much help to them. I have been told that I have been 'an inspiration' to other cancer sufferers; I sincerely hope this is true but I am no medic and can only offer the same sympathy and good wishes as anyone else, except perhaps with the benefit to both of us that at least I know what they are going through.

But treatment is constantly improving and one day I really do hope that cancer will become a thing of the past. It is the word that strikes fear in the heart of all of us and with good reason.

Goodwood Revival 2016 – another milestone.

In the meantime, we have to adapt and learn; having cancer has for me been a life changing, but perversely an, uplifting experience. I wake up every day with a smile on my face in the knowledge that I have beaten it for another 24 hours.

To Blog or Not to Blog?
I have found writing a blog and posting the occasional facebook update to be both cathartic and, in retrospect, therapeutic. A problem shared and so on. Others I know have endeavoured to keep it very much to themselves and I respect that. If that's their way of dealing with it, I don't have a problem with it, everyone has to deal with it in their own way. I will keep this blog open, just in case of new revelations or updates. The thought of closing it down is rather sad – it has become an old friend and I know from the stats that people have read it, even if some have said that it has sometimes made difficult reading.

The Future
My three monthly check ups will, after April, become four monthly for another year and after that, assuming all is well, I will join a 'self-diagnosis' routine where I have blood tests which are monitored by my oncology team in Southampton and unless they (or I) have cause for concern, I will no longer need to attend outpatients appointments. I won't mind foregoing the long wait for these: rarely do they run on time, usually entailing an hour and a half wait for a 20 minute appointment. bUt I will miss my pilgrimages to visit the lovely staff on D3 although I suspect that in another year's time they will either have had enough of me popping in or the staff will no longer remember me!

I am now less than three years from being able to claim my state pension, being the age that still benefits from a retirement age of 65. I am enjoying my relaxed work regime – I still enjoy a challenge but my ambitions are now more realistic and achievable.

Whatever the remainder of my life has in store and for however long that might be, I do not intend to waste it. I've been given a second chance, but cannot reasonably demand a third.