by Raz Shaw
Looking back on all this from behind the computer screen, I am so proud of twenty-eight in that moment. I am proud of eleven, twelve and fourteen too. Twenty-eight instinctively knew that to get through some of the big stuff, he had to find the thing about himself that made him feel special. Unique even. He found that in the extraordinary sexual confidence of eleven and twelve and the eventual self-awareness of fourteen. When I left the hospital that day, I did leave with a swagger. But the swagger wasn’t about sex, it had just been triggered by its memory. The swagger was about an innate understanding that I was probably going to be OK. At least for today anyway. But cancer swaggers don’t last too long when you’re a gambling addict. No. My swagger soon tuned into a slightly panicked shuffle. A shuffle that took me straight from the Royal Marsden Hospital in South Kensington to Napoleons Casino in Leicester Square.
CANCER VERSUS GAMBLING,
PART ONE
ߦ Cancer is an insidious disease that is all-consuming, eats away at your insides and occupies your mind and your soul at every waking and sometimes sleeping moment.
ߦ Gambling addiction is an insidious disease that is all-consuming, eats away at your insides and occupies your mind and your soul at every waking and sometimes sleeping moment.
I’ve told you how gambling came into my life from an early age. From the eleven-year-old’s winning adventure at the dog track to the twelve-year-old’s Vegas wonderland to the Edinburgh student’s Chinese buffet casino residence, and on.
What I now know is that there was a cavernous hole deep inside me that ached to be filled. Along the way to my fifty years of life so far, I have tried to fill that hole countless times and with countless things. And gambling filled that hole. And cancer widened that hole and filled that hole. And gambling filled the hole that cancer had widened.
Gambling was a devourer of time. Seven hours sitting at a blackjack table felt like a few minutes. The world as I knew it disappeared. I was gripped by its hypnotic claw. I couldn’t move. Didn’t move. Didn’t need to move. Didn’t want to move. All of the day’s appointments went for nothing because I couldn’t leave. I couldn’t leave if I was winning because I may have been on a streak. I couldn’t leave if I was losing because I was definitely, definitely going to win it all back. Definitely.
And that’s the decaying thing about being a gambling addict. Your level of certainty is heaven high. Your next bet is the one that will take you back on top. Take you to your diamond-encrusted floating paradisiacal nirvana. So it’d be stupid to stop now. Criminal even.
BACK IN THE ROOM
On 13 June 1995, I was diagnosed with cancer.
On 14 June 1995, I was at my usual blackjack table in Napoleons Casino, Leicester Square. I was in shock from the diagnosis and pain from the biopsy. Blackjack focus was my unmatchable numbing remedy. I climbed back into my focus bubble. I shut out the world around me. I was never the most sociable gambler at the best of times. Gambling wasn’t a sharing thing. Gambling was pure self. I wanted to get lost in it. Not chat about it.
FILTH
Gambling addiction is mental filth. You know you should stop but you can’t. You know that you shouldn’t be thrilled when you lose but you sort of are. You are a millefeuille of self-hatred and this is your fuel. And if you talk to anyone else while you are doing it, you might just have to admit that this is awful, that this is wrong. If you start admitting that, then ultimately you might have to stop. Gambling. And you absolutely don’t want to do that. Absolutely not. You need to stop. But you don’t want to. So at the best of times I didn’t speak to anyone. I was in a miasma of bewilderment. I have no idea if I lost or I won. I suspect I may have won. Don’t know why. Beginner’s luck perhaps. A beginner of cancer, that is. Not gambling.
CHEMO DAYS
It’s hard to try to capture the bizarre, light-headed, sick-in-your-mouth empty feeling that was having chemotherapy. The night before always felt like the Sunday before school. All I ever wanted to do was run. Away. But I forced myself to stay and fight. It’s even harder to capture that feeling in the past tense so we are going back to the now that is almost every Thursday from the second half of June 1995. This particular time is about six weeks into my treatment. As you will see, things weren’t going well.
A THURSDAY IN THE SECOND HALF OF JUNE 1995. LONDON
Today is chemo day. I slept well last night. Like a child on Christmas Eve. Excited about going to sleep in order to wake up to get his presents but with a knotted feeling of fear about the possibility of his presents being shit. Although I am not sure a seven-year-old would have quite so much insight about his inner psychological make-up.
Today is chemo day. I try to open my eyes but they seem to be glued together. As I wrestle with my eyelids, I notice that I can’t really breathe. I have a granite bowling ball lodged in the back of my throat forcing down on me every time I try to open my larynx. My skin feels like it has turned itself inside out. My body is ganging up on me. I am lying in an Olympic pool of sweat.
Today is chemo day. I might just lie here quite still forever. If I don’t move, try not to breathe and don’t try to open my eyes, all this might disappear. All this might disappear. All this. Not just this. This now. But all this. And I have been dealing really well with all this.
I have made countless bad cancer jokes about all this.
I have had lots of hats bought for me, to cover the side effects of all this.
I have continually stuck two fingers up at all this.
All this was a fucking breeze. Was. All this.
Until all this.
Today is chemo day. As I lie here motionless, my heart is beating out of my chest. I know that all this is just the beginning. I know that the road ahead is way longer than I will allow myself to imagine. After all, I have closed myself off from the truth by presenting to the world an image of a man who is really open about his recent hard-core diagnosis. A man who is inclusive and who doesn’t seem to take it too seriously. That is my escape route. And it isn’t an entirely truthful one.
Today is chemo day. As I lie here motionless, my whole body sweats and shakes in equal measure. I may as well have stepped onto a landmine. There is no escape from the reality of all this. I can’t face today. Today can bugger off. I am going to disappear under my duvet and watch the OJ trial. Simpson that is, not orange juice. Orange juice is not on trial. Yet. Though if it were, I’m sure its defence would be pithy! See, even my shit jokes can’t shake me out of my darkness. It was six weeks since my first chemo. And so far, absolutely nothing has happened. No hair fall-out. No de-swelling. Nothing. So I’ll just wait then, shall I? I can’t face today. Hey, future, it seems we might not get to meet after all.
Today is chemo day. I haul myself out of bed, into some ill-fitting clothes and eventually make it to the Royal Marsden in one piece. Sweating profusely like someone with cancer, but pretty much in one piece. The first nurse I see doesn’t quite manage to conceal her ‘oh fuck, he looks like shit’ look. She sends me down for my ‘bloods’ straight away. The same woman always takes my blood. She never smiles. She always sighs. Loud and long sighs. She taps and prods and anaesthetises and pricks and pulls and labels with steely cold efficiency. I am used to it by now. I quite like it in a perverse kind of way. This is no time for needle phobia. If you have been given a cancer diagnosis, a few pricks are the least of your worries (stop it!).
Today is chemo day. I am sitting in the waiting room. I am waiting (that’s what you do in waiting rooms) to see the consultant before embarking on my third course of chemo. This cancer thing can too often feel inexorably lonely. Like you’re crawling through the Sahara on your hands and knees with no water and nobody around for miles and miles except a tiny screen in the corner of the sky that is showing you how beautiful and cool and charmed everybody else’s life appears to be. Everything seems to be taking a slow-motion amount of time today. My skin throbs and sweats. My head spins. My world’s in a blur. I try to read something to pass the time but wh
enever I try focusing on an individual word, that word leaps off the page and pulsates
pulsates
pulsates
pulsates
and buzzes
buzzzzzzes
around the room, taunting me and goading me to catch it and nail it down. I don’t have the focus or the desire even to begin to try to return it to its rightful place. The best I can do is just look at the peculiar glossy pictures of the obligatory hospital Hello-type magazines. Or OK! Er, right now, NO.
Seconds and minutes hang around as if they are going out of fashion.
Today is chemo day. Eventually, the junior oncology blah blah comes and sits down next to me and as gently as she possibly can tells me that the reason I feel fucked is because I am fucked and the chemo routine I have been having is just not working and the dark shadow between my lungs has decided to grow rather than shrink and they need to attend to this right now and the only way they can do that is by admitting me right now in order to work out how to reverse the situation and there isn’t a minute to waste and my immune system is in serious danger of shutting down completely and if that happens then it could be very serious very serious indeed and there really is no time to waste and would I like to call someone to fetch some things for me and if I just wait here she will get a porter and a nurse to take me to a ward and she or one of her colleagues will be down to see me in the ward later and not to worry because this is what happens at the beginning of chemo to some degree it’s trial and error and they need to learn what works and what doesn’t work with this particular case and they can only do that by monitoring me and the situation and that I am likely to be in hospital for no more than ten days and by then they will be sure to have found a cocktail more suited to my needs and I will just go and find that nurse to look after you.
Now, to be fair, she did talk slightly more slowly than that. She did take one or two breaths. She was looking me in the eye when she was telling me this. She was really gentle and seemingly caring. She delivered the news as if it was fresh just for me rather than just something she had delivered to countless patients that week. I was nodding like an ever-nodding thing and doing a bad impression of someone who was taking all of this in.
CREEP
It began to creep up on me during the bit where she was talking about my immune system. It slowly filled me up and filled me up till I was fit to completely fracture. And the straw that finally broke cancer boy’s back wasn’t the fucked immune system or the growing mass inside me or the serious danger.
It was the ten days.
ߦ Ten days of hospital.
ߦ Ten days of incarceration.
ߦ Ten days of being reminded of the reality of this right-now situation.
ߦ Ten days of not taking the first show I was ever going to direct to the Edinburgh Festival. And that is the one thing that I absolutely knew had to happen. For my sanity. For my soul. Saying no to Edinburgh would have been like my future slamming the door in my swollen face. An acceptance that this is my future now. And, believe me, I was not ready for this.
I am desperately treading water trying to keep afloat. I might sink. I might swim. I don’t have control over all the circumstances that might pull me under. I am not brave. I am not battling. I am just doing ‘now’. ‘Battling cancer’ implies a lever of proactivity that I don’t feel I have. It implies that I am literally staring cancer down, eyeball to cancerous eyeball, dressed in full and rather fetching armed combat gear, ready to pounce for its jugular when I catch a glimpse of its weak spot. If it has one. If only that were true, that would make things so much simpler.
Today is chemo day. I sit in a corridor in a hospital in South Kensington and shake my head and mumble and shake my head and sob. I am grieving for my now. My present. The oncologist is more than adamant that any course of action other than being admitted would be dangerous for my health. I am not an oncologist but I know that isn’t true. Through my crazed hysteria I have the clarity to see that the symbolism of letting go so easily will haunt me for the rest of my illness. And that won’t be helpful or healthy. I know I have to fight this. Just this once. I know that I am right. I know that going to Edinburgh is much healthier right now than staying in hospital.
I know I am right. Know I am right. Know I am. Won’t budge. Won’t budge. Won’t budge. Won’t. Can’t.
Today is chemo day. It takes a while, but there comes a point when the nurse and the oncologist look at each other and agree to my demands. They know what has to be done. They go into situation management mode.
a) Accommodate his need to get to Edinburgh.
b) Make sure he doesn’t die along the way.
And the doctors’ and nurses’ flexibility and understanding just underlines my newly discovered understanding that the National Health Service is an incredible institution. I was given the option to be treated privately at the beginning of this saga but my instinct told me I would feel safe in the hands of the NHS. And I do.
Today is chemo day. One of the upsides to spending so much time in hospital is to be able to watch the human machinations of the place in action. I have become fascinated by its natural ebb and flow, its routines, and, most of all, by the working relationships of the doctors and nurses and especially how defined they are in their roles. It is like watching a 3D version of ER. As a general rule the nurses are more empathetic and doctors/consultants are slightly more aloof but that doesn’t feel wrong. It feels like the optimum way to maximise their skills. It also means that often, when they are working together, a magical synergy occurs that can produce extraordinary and surprising results. Such is the case here. It feels incredibly moving to watch the nurses and doctors kick into action around me. It makes me feel important and unique and cared for and, most of all, it makes me feel listened to. And that is the single most essential medicine at this point. The reality is that they are just doing their job and being fucking brilliant at it. And young George Clooney is in charge, of course. No, scrap that. They are all Clooney as far as I am concerned.
Today is chemo day. There is definitely a debilitating disease called second-opinion-itis. I understand that people want to be sure, want the confidence of more than one diagnosis, but where does it, end? Whose opinion DO you end up trusting? For me, I just want to get on with it, and second and third opinions take an awful lot of time.
INSTINCT
My whole life has been based on instinct. The biggest lesson is to have the confidence to trust that instinct most of the time. And that’s not easy. With my diagnosis and pretty much all my treatment, I couldn’t find a rationale to doubt what was being said to me. I put myself and my life in the hands of professionals, and I had no reason to think I knew better than them. Medically speaking anyway. And in moments like this, for instance, when I needed to be heard, that mutual trust that we had built up allowed a dialogue and a creative solution to be found to a rather tricky, delicate and difficult problem.
And the word ‘grace’ was invented for moments like this. Moments where everything fell into alignment. Everyone working together at the same tempo and at the maximum of their abilities to produce an outcome that was best for everybody. It was a bit like the most creative moments in a technical rehearsal in the theatre. A kind of quiet and profoundly proactive hum permeates the air. The calm is interspersed with moments of mania. Good mania. Rewarding mania. Creative mania.
Today is chemo day. The medical staff have a plan. And we all sit round a table like adults and talk through the plan. I say ‘like adults’ because through most of this illness I have felt like a five-year-old, an eight-year-old and a fourteen-year-old respectively:
ߦ The five-year-old doesn’t understand enough to know more than something hurts and he needs to cry about it.
ߦ The eight-year-old knows too much. He sort of understands. He knows things are bad but is too shy to ask the scary grown-ups for stuff that might make him feel better.
ߦ The fourteen-year-old is trying desperately to be grown up abo
ut it all. He is working very hard to hide his pain and his fear.
Today, because of the generosity and spirit of the doctors and nurses, I am a young adult taking everything in and trying to work out what my opinions on all this stuff might be. It’s both daunting and strangely calming all at once. Daunting because you are being given a little bit of control of your life back and you’d better not fuck it up, but calming because you have been given a little bit of control of your life back and you’d better not fuck it up.
THE PLAN
The plan is quite simple. If I allow them to admit me now, they will give me intensive treatment over the next two days. They will then discharge me. I will fly up to Edinburgh for three days armed with a case full of drugs. In four days’ time, I will return to London and be admitted again for further intensive treatment. What occurs after that can be discussed at a later date.
Today is chemo day. My heart almost explodes with admiration and thanks for the amazing way they have dealt with difficult young me. The adrenaline that I am feeling at this instant is a perfect cover for any fear that might be lingering around inside. I have a focus and a purpose for the next seven days and that’s just awesome. I immediately kick into action, changing flights, accommodation etc. A smog of tunnelled activity surrounds me. I am allowed home for an hour to get some stuff, talk to some people and return. I don’t even have to resort to crying to get my own side room. The nurses are on my team. We are all in this one-off, feature-length episode together.