by Raz Shaw
At the centre of my new life-changing world was English teacher and theatre director Philip Swan. He was one of those brilliant teachers who loved what he did, loved discovering the individual in the boy and loved coaxing and sometimes bullying the talent out of you. He helped me bring out the me in me again. He introduced me to a world that made sense and a world that I knew I would call home for the rest of my life. And within that environment I thrived. Not academically. That was always a bit of a chore. But I thrived as a person and the man that I instinctively knew I eventually wanted to be began to emerge.
I say ‘began’ because it took a hiatus of fourteen years, a university course I despised, some jobs that made me feel more than ill, a raging gambling addiction and a cancer journey, before the man in me started to find his feet in the real world.
It is, oddly, both a blessing and a curse to discover at the age of fifteen what you should be doing for the rest of your life. While it takes the lid off the pressure of the search, at the same time it means that when you are NOT doing that thing, the pain is immediate and profound and lasts for as long as you are not doing it.
And that pain did run deep. Sometimes still does.
At sixteen, I was even more sure that I had discovered what I had been put on this earth to do. Problem was that I was doubly certain that the paternal battle against me doing it would be full on and seemingly never ending. I wish now that I had had more of a stomach for that particular fight. When you are sure that academia and university are not your thing and yet you find yourself at university and not drama school, you just know it’s not going to end well.
But at the time it seemed easier and less emotionally painful than the alternative. The alternative being having to listen to one irrational and insensitive reason after another from my father as to why I should ignore my heart and listen to his head. The twisted, knotted-up agony of not being listened to by him was too much for me to deal with back then. Much easier to convince myself that going to university would be a good idea and wouldn’t be a TOTAL waste of my time!
So studying Business Organisation at Heriot-Watt University in Edinburgh rather than being at drama school in London was where I could be found in the winter of 1986. Miles away – geographically, emotionally and literally – from what I knew I should be doing.
The displacement that I felt meant I was looking for something to fill that void inside me. Subconsciously, you understand. If I had been in a fully functioning conscious state, I would have been on the first overnight sleeper back to London. I don’t think I properly woke up till the diagnosis some ten years later.
I found that something in the strange world of blue-rinse-populated Lothian Road amusement arcades by day and seedy Edinburgh casinos by night. It was the perfect escape. And at midnight every night – for its army of Chinese customers – the casino laid on a full and free Chinese buffet. That was my justification. It was free. I was a student. And a Jew! It was free. Free. Food. Free food! I couldn’t turn that down. I would even invite my friends along to experience the gratis gourmet Chinese experience. However, gambling is a solitary pastime. At least gambling addiction is. So I would encourage my friends to leave soon after they had filled themselves up on the perfumed grease. I, on the other hand, would stay. For hours. Now and again I would win. Sometimes I would win big. Most of the time I would lose. A lot of the time I would lose big. Most nights I would leave the casino at 4 a.m. realising that the free Chinese buffet I had had four hours earlier was the most expensive Chinese meal of my life.
Being a gambling addict on a student grant was not sustainable so I had to become really well versed in the art of lying to the parents to justify why I needed them to give me any more money. I was an expert at it. Addiction and lying go together like peaches and cream.
When I left university, I made a desperate effort to be the person I knew I was meant to be, so I went to drama school and took a one-year postgraduate diploma in acting. My gambling took a back seat. For the first year or so out of drama school I was actually almost happy. I was acting a bit and that was satiating me to some degree. But as the acting dried up so did the money, and I turned to my old friend gambling for company. It would win me my fortune, you see, and that fortune would enable me to take even more control over my life and become a theatre director. The job I secretly craved. But the odd thing is that you need money to gamble, so I had to ditch the dream and find a job that paid big.
A few years earlier in a surreal university holiday job, I discovered I had the unenviable gift of being able to sell stuff. Timeshare in Menorca to be precise. I know! As if my soul hadn’t been sullied enough already. So now, in order to fuel my addiction, I reminded myself of that ‘talent’ and took a part-time job selling light bulbs and industrial cleaning chemicals over the telephone. It was a slippery slope and I slid down it effortlessly. The addiction devil on my shoulder urging me to descend. Three years later my creativity had been completely swallowed up, my soul had long been extinguished, and I found myself earning a small fortune running a dodgy telesales company in London. That small fortune never stayed a fortune for very long. My gambling was out of control. My wallet was always empty. For the last year of that job my chest ached every morning as I sat on the Tube going to work. An ache so deep that a number of times I literally couldn’t breathe. I was festering in my own casino sweat of addiction, and escape was a luxury I didn’t deserve. And then real life put its gnarly hand on my shoulder.
PART ONE: THE DIAGNOSIS
12 JUNE 1995
It was Monday, 12 June 1995. My twenty-eighth birthday. I was a lost, directionless gambling addict.
Three weeks earlier I had quit my highly paid telesales job. My friend Debbie had written a play. She knew that I was trapped in the vicious circle of highly paid job/gambling addiction. So she asked me to direct it. Her play that is. On one condition. That I devoted all my time to it. Full-time, in other words.
The moment she said it, I could feel the relief course through my bones. I said yes. And yes. And yes. I phoned up and resigned from my job that instant. A phone call that changed my life. I stepped into that petrifying void of the unknown. The pain in my chest vanished immediately.
However, three weeks later a new pain appeared. This was no ‘I hate my life’ pain. This was a real pain. An actual physical pain.
PINEAPPLE HEAD
It had all happened so quickly. One bright summer morning, I woke up with a neck the size of a pineapple on steroids. It wasn’t a good look. To make matters worse, when I bent down all the blood rushed to my neck (for once!) and I found it impossible to breathe. Which is always tricky. My head wanted to explode, and my skin felt like it was searching for a way to break away from my body and release the mini blood tsunami brewing up inside me.
For a few days I kidded myself that my inability to breathe and my huge throbbing neck might be the result of an allergic reaction to something I’d eaten. It was much easier to kid myself than to face up to the truth. The truth that there might be something seriously wrong with me. So I spent three long breathless days in glorious avoidance mode. I don’t like doctors at the best of times. I think it’s an authority thing. And an ‘out of control’ thing. Plus, it took me back to school medicals when the elderly male doctor would cup my balls and ask me to cough. I was never sure when to cough. Just before he cupped my balls? Just after? And I certainly wasn’t sure why he cupped my balls at all!
After three days of medical evasion, it seemed clear to me that unless I had eaten a whole pineapple which had then lodged itself in my neck, there probably was something really wrong with me.
THAT VOICE
Eventually, I dragged myself off to my GP. He drew some diagrams that I didn’t understand and sent me for an X-ray THAT INSTANT. When I felt that cold X-ray plate against my chest, I got a strange piercing premonition of what was to come. I chose to ignore it.
The next day I returned to the doctor, who was in receipt of the results.
&
nbsp; I knew something was up when he put that voice on. You know that voice. The one that comes through a faint smile and sounds like a cross between a Radio 4 continuity announcer and someone giving their best phone sex chat (not that I’d know what that sounds like).
A breathy gravitas.
‘There’s a shadow between your lungs. I think you should go and have a biopsy TOMORROW.’
That ‘tomorrow’ was not soft and breathy. It was sharp and shouty and made me jump. It was a subtly unsubtle way of saying:
‘CANCER, I THINK IT’S CANCER.’
So I toddled off to have my chest cut into. THE NEXT DAY.
I should point out that the fact that this whole thing was happening in the blink of an eye was indeed a blessing. No time for reflection. No time to be scared. No time even to reflect on what the final diagnosis might be.
BIOPSY BLUES
In fact, the only time I can truly say I was scared was when I was about to be sent down for the biopsy. The biopsy to discover what this shadow between my lungs was. Debbie was with me in the ward. We were partaking in our usual banter. The hospital porter approached. He smiled and took off the bed trolley brakes. He wheeled me away. Backwards. Debbie waved. A wave seemed eerie somehow. Fateful. A goodbye. Her silhouette got smaller and smaller as I dissolved into a mirage of nothingness.
My life had become a David Lean movie. Maurice Jarre’s score was swelling in my head. Underscoring my life. I was no longer twenty-eight. I was five. Six at the most. I was wrapped in a blanket of uncontrollable fear. A fear that has no explanation or target. But just is. Fear.
‘Got to get off this trolley. Got to get off this trolley and run. And run. And run. And keep on running. And run and run and run and run and run. As far from here as possible. As far from this as possible. And run and run and run and run. HELP ME SOMEBODY!’
I bit my lip to stop myself crying and I drew blood. Nothing compared to the slice that the surgeon was about to make into my skin and my insides, but real blood nonetheless.
The astoundingly instinctive and magical nurse walking with me to the operating theatre gently put her hand on my shoulder and, like an angel, just stroked me down from the heavens, away from hyperventilation and back on some sort of even keel.
The exceptionally posh anaesthetist numbed my arm and administered the first dose: ‘This will feel like two glasses of claret… Now I want you to count backwards from five. This next injection will feel like eight glasses of claret.’
‘Five, four, three…’ White. Out.
ME, MY CANCER AND I
In the period leading up to my diagnosis there was very little doubt that my pineapple head was a result of something growing inside me. That unavoidably led to the thought that if the men and women in their white coats or their blue ER scrubs couldn’t stop the pineapple growing, then it would inevitably eventually explode. My head, that is. And leave a sticky pineapple mess. And a dead Raz.
I had already tried to imagine how a negative diagnosis might make me feel. I believed I would cope and be terrified in equal measure. However, it is fair to say that a vast part of me fully expected that being told I have an illness that had a decent chance of making me disappear would fill me up with such crippling, paralysing terror that I would spend my chemotherapy time curled in a foetal ball staring into a void of zeros. I say I expected that would be the case; the truth is I didn’t know what to think.
I am walking around in a daze. I have an air of someone who’s fine. Apart from my massive swollen neck. I can’t stop to think about stuff. If I stop to think, I might just crumble. I have Jarvis Cocker in my ear telling me I’ll never watch my life slide out of view. I am watching my life. I am also in it. It feels like I am translucent. They can see straight through me. I have no middle. Is this a daze? I think this must be fear. I think this must be what fear feels like? If this IS fear, why am I sort of euphoric at the same time? That seems just wrong.
Just as death is abstract, so is waiting for a diagnosis when, deep down, you are pretty damn sure of what the outcome will be. However hard you imagine it, it is still not real until the words come out of the doctor’s mouth.
It’s like England taking penalties against Germany. The whole thirty minutes of extra time is laced with the sinking feeling that a penalty shootout against the Germans inevitably means only one thing.
Lose. Lose. Lose.
And you’re in a strange fucked-up haze of plurality. Because you are 100 per cent certain that you will not win. You are certain one of your players will sky the ball way over the crossbar. You are certain Germany will find the far corner of the net with pinpoint precision every single time.
You’re not going to win. You know that.
In fact, you’re going to lose. You know that.
You’re doomed. You know that.
Yet, inside you, there’s a stabbing, breathless pain.
It’s hope. That old manipulator, hope.
And those two feelings sit alongside each other:
Hope and absolute certainty of failure.
The very combination of the two churns your stomach to cyclone proportions.
That’s what it feels like waiting for the diagnosis.
Suspended – breathless – hopeful – agony.
THE RESULTS SHOW
Today was results day. On the one hand, I seemed to be dealing with this craziness pretty damn well – if I say so myself – and, on the other, I was perfectly able to just block it all out completely. To the point where I had actively chosen not to speculate as to what the pineapple-head biopsy may discover.
The previous night I had a gathering of people at my flat. What was meant to be a celebration of the day of my birth ended up as a show of support for me the day before my diagnosis. Conjecture as to the outcome was minimal. It mainly came out of my own inappropriate mouth and from a very blunt American friend, Polly.
‘It’s either benign, in which case you are going to have to have a major operation to get it out. Or it’s malignant, in which case you are going to have to spend the next year in heavy duty treatment. Either way you’re fucked.’
Fucked indeed.
So when the consultant, still in his blood-splattered scrubs, delivered the results, I was a bit more prepared for what might be to come. Well, I say prepared, I was still blessed with wilful ignorance, so when he gave his diagnosis I didn’t really register what it was.
‘He’s a very ill young man, he has Hodgkin’s Disease,’ he said, talking to my mother, as if I was as old as the eight-year-old I felt in that moment. My mother understood what Hodgkin’s Disease was. She was much more clued up than me. Through the haze of denial, I deciphered slowly what it meant. It meant Germany had indeed won on penalties again! It meant Cancer.
I made a call to my friend Tiggy who was staying at my flat to help me through this weird bit of the journey. ‘We’re in the hat business.’
Denial over. I was Cancer out. And Cancer proud.
As it turns out I didn’t have Hodgkin’s Disease. What I actually had was non-Hodgkin’s lymphoma. They are quite similar. They are both cancers of the lymph system. Don’t ask me what the major differences are. In 1995, I had only just discovered that you could search for information on a computer and that it could help you with lots of questions you might need answers to. My brother produced a few pages that he had ‘downloaded’. His words, not mine. I didn’t really want to know too much detail. In fact, I was happier not knowing. All I did know was that non-Hodgkin’s lymphoma was the least good of the two options to get.
ODDS
The consultant may have guessed that, alongside my newly attained status as a young man with cancer, I was also a gambler. The biggest clue being that I never asked about the science of my illness. All I wanted to know was:
‘What are my odds?’
‘What odds will you give me on survival?’
Well, turns out the odds were pretty good.
Unlike blackjack in a casino, they were
stacked in my favour. Although consultants liked to remove themselves from the buzzers and bells of conjecture, when pushed I was given about a 70 to 80 per cent chance of survival (depending on which consultant I asked and how I phrased/loaded the question). That’s pretty good odds. Odds any true gambler would swallow up.
I was told that it was very treatable – especially for someone relatively young – but if it came back, then I would pretty much be toast. That’s not the technical term they used. Though it wasn’t far off.
And so with my heart in my mouth and cancer in my body, the next phase of my life was about to begin.
JAR. SPERM. SPERM. JAR
I was twenty-eight.
In the blink of an eye, I had a doctor’s appointment, an X-ray, a shadow between my lungs, and stage 4 cancer. I was about to have heavy duty chemo. The last thing I was thinking about was babies. But the clever people at the Royal Marsden Hospital had seen this all before. They had treated slightly bolshie, somewhat bewildered twenty-eight-year-olds before. They knew the routine.
‘Heavy chemo can make you infertile so in cases such as this we suggest you go to the clinic and deposit some sperm… OK?’
‘OK.’
‘We will need to postpone your first chemotherapy session so that you can do this, but that shouldn’t be a problem.’
Shouldn’t be a problem for who? I had psyched myself up for my first chemo session. I was ready for my first chemo session. I mean, I wasn’t ready for it but I was ready to embrace not being ready for it.
And now they wanted me to give sperm.
Now, normally I am pretty generous in my sperm giving. I give sperm freely, in fact. Freely, openly and generously. Yes, I am a generous sperm-giving kind of guy. However, my sperm isn’t normally deposited into a bottle and then a bank. That’s not the kind of deposit that I’m used to. But despite, at the time, having zero desire for a child, I was persuaded that it couldn’t hurt to have some in reserve. Some sperm reserve. In case of a drought.