Death and the Elephant
Page 1
Dear Reader,
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This book is dedicated in part to the amazing Royal Marsden Hospital and so, vicariously, to the NHS. On 5 July 1950, Aneurin Bevan launched the National Health Service on three core principles:
1. That it meets the needs of everyone.
2. That it be free at the point of delivery.
3. That it be based on clinical need, not ability to pay.
It’s a remarkable testimony to this country that, despite repeated attempts to undermine those core principles, they held strong in 1995 and they still, to some degree, do so to this day.
That’s not politics, or trumpet-blowing, that’s just something that we take for granted and need to remind ourselves of now and again. Before I was diagnosed in 1995, I certainly hadn’t really given it much thought.
To Val Shaw aka my mum
For her unwavering, unconditional, unequivocal and too often underappreciated support.
With special thanks to the Patrons who supported this book
Anna Aleff
Michael Alexander
Bill & Siân Buckhurst
Claire Cooper
Amber Evans
Phoebe Fox
Terence Frisch
Marguerite Galizia
Harry Hepple
Julie Hesmondhalgh
Sam Heughan
Anthony Horowitz
Polly Hubbard
Janey Johnson
Jack Knowles
Richard Lee
Julie Legrand
Bruce McLeod
Andrea Neumann-Claus
Debbie Oates
Kate Plantin
Charlie Russell
Gesine Schmücker-Schüßler
Mark Shaw
Henry Shields
Rich and Nia Smith
Naomi Wallace
Lucinda Westcar
Chris White
CONTENTS
Those Who Didn’t Make It
Preface
Prologue
Part One: The Diagnosis
12 June 1995
Me, My Cancer and I
Jar. Sperm. Sperm. Jar
Diagnosis Cancer
Part Two: The Treatment
Cancer New
POV Cancer
Why Me? Why Not Me?
This Too Shall Pass
Sex and Cancer, Part One – Ibetterfuckhimjustincasehedies
Cancer versus Gambling, Part One
Chemo Days
Sex and Cancer, Part Two – The Cancer Swagger
Oral Armageddon
I’m a Secret Positive Thinker
Cancer versus Gambling, Part Two
‘We’re in the Hat Business’
Embracing the Swagger
Dereliction of Duty
We All Need an OJ Trial
Cancer versus Gambling, Part Three
Pesky-Little-Brother-Cancer
Wii Cancer
Emotional Roulette
Ration the Relatives
Bravery Is
Middle of the Night Emotional Tsunamis
The Edge of Heaven
Escape to Freedom
My Name’s Raz Shaw and I’m a Smellaholic
In Memoriam?
Part Three: The Results
This Moment
Cancer versus Gambling, Part Four
Dear 28
Epilogue
Appendix 1: Word’s a Slave by Naomi Wallace
Appendix 2: Excerpt from Gambling by Tom Holloway
About the Author
Acknowledgements
Supporters
Copyright
THOSE WHO DIDN’T MAKE IT
I wanted to write this book in honour of those who didn’t make it. One in three of us gets cancer. I don’t know what the survival rates are. All I know is that nothing makes me sadder than when someone dies from this evil disease. I didn’t feel as strongly as that before I entered the club. The cancer club. Those deaths didn’t seem so personal. But I joined the club – and it is a club – and in this club we should feel impacted every time we hear of someone not making it. And whether they lived through cancer for a day, a week, a year, ten years or a lifetime before they died, this book is an attempt to glory in those moments of living. I am not down with the phrase ‘cancer survivor’. It makes me feel a bit sick in my mouth. Not completely sure why. It is something to do with it unwittingly disrespecting those who didn’t survive. As if those people had failed in some fashion. Yet they, to me, are the brave ones. The rest of us are just people who are still living, for now. Not only do they not have the luxury of living, but the pain of their death goes on in the loved ones they leave behind. That’s the part that makes me saddest. And that to me has been the most important thing to remember when writing this book. I can make light of my own life and my cancer journey. Because it’s just that. My life. But I can’t make light of yours and I can’t make light of those who didn’t have the luxury of surviving. I hope they would have appreciated, understood and enjoyed this book.
PREFACE
I was twenty-eight years old when I was diagnosed with cancer. I am now fifty.
Spoiler Alert: I don’t die in the end. At least not in the first edition.
This isn’t a book about how to survive cancer. That would just be weird. And wrong.
This is a book about having cancer and a gambling addiction both at the same time. And coping and not coping and trying to cope. It’s not about tomorrow. It is solely about today. Trying to cope today. What happens tomorrow is for tomorrow.
If I had the opportunity to go back in time, I wouldn’t change a thing.
Despite the hideousness of chemo. Despite the endless days of exhausted inertia. Despite having a head the size of a pumpkin and a neck the size of Hulk Hogan’s thigh. Despite it taking me out of the loop of the world and making me feel a boy again. Despite the hidden loneliness. Despite being almost eaten alive by the monster that is addiction. Despite the constant soft rumble of low-level despair.
Despite. Despite. Despite. Despite. Despite. Despite. Despite.
It’s somewhat of a cliché to say that the journey through cancer treatment and gambling addiction and out the other side has made me who I am today. But it happens to
be true. It has given me jewels of insight and afforded me the privilege of sometimes being someone else’s shoulder to lean or cry on. And the writing of this book has thrown up questions that I had never before thought to ask myself. The biggest and most obvious being: has that simultaneous journey through and beyond cancer and gambling addiction changed me? My outlook and personality? And the answer has to be yes. Without a doubt. I have no placebo ‘me’ to compare me to, so I have no true ability to gauge in what way and by how much. And that’s a big reason why I wanted to write this book. To find out. It’s a big reason why I wanted my twenty-eight-year-old self and my fifty-year-old self to communicate in some fashion. To find out.
The other almost impossible question to answer is how present has cancer been in my life these last twenty-two years, and how involved is it still in everything I do, say or think? That is an impossible question, but what I do know is that it’s present enough for me to want to write a book about it. It’s present enough for me to want to share some personal insights into what it felt like living with it. And it’s present enough to have given me an awareness and an insight into life and death that I would never have properly gleaned without it. And that’s the gift that keeps on giving.
It’s also important to say that this is a book that doesn’t demand that you be strong. Or that you weep oceans. When I was ill there were times I was happy to talk about it and times I wasn’t. There were moments when I was open and honest, and lots of moments when it was easier to bury my head in the sand. The cancer sand. It wasn’t always a breeze. It was often a hurricane. But being in the eye of a hurricane can be fun sometimes even if at the same time it’s somewhat life-threatening.
Part of living is the thrill of confronting death and saying: ‘Do your worst, motherfucker.’
Sometimes death wins and sometimes it doesn’t, but always, always, it is better to have stood up to it and tried to find moments of joy within it than to have simply held up your hands and given in to it.
And you never stop absorbing stuff and learning stuff. And real life never ceases to surprise you. Every day.
Just before my self-imposed rewriting deadline, something happened that forced me away from my self-reflection for a nanosecond to think about someone else. Someone else! Goddammit. Worse still, that someone else wasn’t just any someone else, it was THE someone else. Or should I say SHE someone else.
Everybody needs an unconditional when they are ill. Unconditionals put up with your shit. Sometimes literally. Unconditionals keep the unwanteds at bay. Unconditionals step forward or back without you having to ask. Unconditionals treat you to food that has proper taste at posh Harvey Nichols-type places to take away the psychological pain of a syringe. Unconditionals come in many forms. Mine came in three letters.
MUM.
I am the youngest of three boys. That has afforded me a rollercoaster of favouritism and neglect. I always thought the hardest thing about being a parent must be NOT having favourites, but as I got older I realised that OF COURSE parents have favourites. How could they not? The secret about good parenting is not SHOWING that favouritism to those self-same kids.
I happened to have two parents in two different schools of thought on that. I had a father who had no ability or even desire to hide his feelings about his children, and, as luck wouldn’t have it, I happened to not be top of the tots. In fact, out of his three sons, I’m not sure I even made the top three.
This isn’t the right arena to go into deep analysis about the reasons why, and it’s certainly not my intention to disparage him. Publicly, at least. In fact, just the opposite. Since his death a few years ago I have managed to find some rationale for what at the time seemed unfair and upsetting. It’s about relatability. The older I got, and the more I started to discover who I was, the less my father could relate to me. A young Jewish north London boy should be interested in… I don’t know what? Not arty things anyway. I should have read the signs when twelve-year-old me was leading the choir in the school carol service. I strode proudly and purposefully down the aisle of the church, in my cassock and ruff, and belted out the first verse of ‘Once in Royal David’s City’. My Jewish father shifted uncomfortably on his wooden pew, not knowing whether to be proud or ashamed. It seems to me that contradiction stayed with him, about me, for the rest of his life and he had no filter with which to hide it. In simple terms, I have grown to accept that my father loved me but didn’t like me. Such is life.
My mother, on the other hand, has always sailed the seas of fairness brilliantly. She had/has three very different sons and that in itself surely presents a challenge. It’s only natural that the personality of one of those three would appeal more to a person than the other two. Hard to resist my winning spoilt brat youngest child charm, of course, but it wouldn’t necessarily have to be me! Well, one way or the other, I can honestly say that my mother has never revealed her favouritism cards. Or at least, if she has, I was never able to detect them. And that’s a huge skill. Having said that, these days all three of us have been relegated. She has one favourite son. And his name is Andy Murray. Or Sir Andy as he’s now known. The boy can do no wrong. I mean. Andy, c’mon, you have your own mum. And she’s pretty hot is Judy. Leave mine alone!
And that leads me to the point.
The mother. My mother.
Just before settling down to write the final draft of this book, my mother was diagnosed with lung cancer. Pretty much out of the blue. It was naturally quite a shock and it provoked within me surprising emotions. Considering the essence of this book is about emotional contradictions when dealing with a cancer diagnosis, this news took any wind I might have had out of my balding sails. Everything I have written and talked about as far as my illness is concerned has been connected with trying to break down the taboos of the C word. Or CA, as hospitals seem to call it these days, presumably to soften the cancer word. And that’s CA as in the separate letters C.A. (C&A without the ‘and’ or the eighties fashions), as opposed to CA as in car. I think the idea being that breaking it down to just the letters makes it somewhat impersonal and thus more palatable. Hmm. Not sure I agree. Anyway, the point is that dealing with my own CA was much easier than hearing about my mother’s. All the things I preach on a daily basis, ‘cancer doesn’t equal death’ etc., flew out of the window, and I found myself in deep reflection on life and what it would be like to lose my mother. I was more than surprised at how profoundly it had affected me. I don’t know why I was surprised. This was my mother, for fuck’s sake. I think maybe I had thought that dealing with my own illness and gambling addiction and coming out the other side and then preaching to others about it had given me some kind of superpower. The Grim-Sweeper-Man (he can sniff out and sweep up an emotional tragedy in the blink of his super-heroic eye). But my mother’s illness showed me that that clearly isn’t true and that I have an infinite way to go before I graduate to superhero status.
What is true is that back in the day my life had been going nowhere. I was a gambling addict desperately searching for help. For direction. For a purpose and focus.
On 13 June 1995, the day after my twenty-eighth birthday, I found it.
That day, I was diagnosed with non-Hodgkin’s lymphoma. Or to be medically accurate: stage 4 sclerosing mediastinal non-Hodgkin’s lymphoma of the large cell type.
AKA: cancer of the lymph glands.
And cancer saved my life.
PROLOGUE
When I started writing this book, I tried to chart a potted version of my life history up to the point of the 1995 diagnosis so as to give you some idea of who you’re dealing with here, but every time I tried to write it, it just felt too literal and linear. And as a theatre director, literal and linear are dirty, dirty words. They are one-star words.
So instead I have been searching for the connection between the four-year-old me, the eleven-year-old me, the teenage me and the twenty-something me. Apart from the fact that they were all me, of course. And then I remembered something that ha
ppened in the last rehearsal room I was in. Well, less what happened but more what someone said. To me.
I was directing a play called WIT at the Royal Exchange Theatre in Manchester. It is no accident that WIT uses cancer as its central means to explore human behaviour in the face of adversity. I had wanted to direct that play for about as long as I have been thinking about writing this book. The lead character, a professor of metaphysical poetry dying of ovarian cancer, was played by the sublime (sublime actor and even more sublime human being) Julie Hesmondhalgh. We didn’t really know each other before we started rehearsals. Casting is always a crapshoot. Not just in terms of whether that actor is right for that part but, just as importantly, whether you might bring the best out of each other or not.
Turns out Julie and I had great rehearsal-room chemistry. That doesn’t necessarily mean that we always got along but that’s all part of it. The dialectic materialism of theatre (I did politics A level. Am showing off. I only got a C, though, so…). In layman’s terms, as long as you ultimately respect each other and believe in each other, then a clash of opinions can often lead to THE answer. An answer that you may never have come up with without such a clash. Julie and I revelled in these clashes. It was our creative spark.
One day, I can’t remember the context, but I must have been pushing Julie quite hard (Julie’s bravery knows no bounds) as she suddenly turned to me and in her deep Accrington burr said:
‘I can’t go there. I am not like you. You love feeling uncomfortable. You fucking revel in it.’
Wow!
OK!
We had only known each other a couple of weeks and she had already spotted my tell. A tell I didn’t really know I had until it was pointed out to me at that moment. And she was right. I DO revel in it.
In what?
I think I revel in challenging myself to see if I can deal with a situation I have never dealt with before. Or, put more literally, I don’t really feel alive if I am not slightly churning up inside. More than that, without it I am often just plain bored. That churning is the springboard to my urgency and activity, and it’s the thing that keeps me alert and interested. In other words, it’s my fuel. My adrenaline. Anyone who knows me will say, ‘No shit, Sherlock. That’s the least shocking discovery since finding out that Barry Manilow was gay.’