by Raz Shaw
But cancer really doesn’t like you escaping and forgetting for too long. Hell no. That’s not in the fucking rules. What I mean by that is it’s not in the goddamn rules. I don’t mean it’s not in the Rules of Fucking. That’s another book entirely! And from nowhere Pesky-Little-Brother-Cancer would rear his poisonous head from under the covers.
‘Only me! Don’t forget me, you know. You can’t forget me, you know. I am going nowhere very fast. Very, very fast. Nowhere fast. Nowhere fast.’
And it’s not just a sudden cabin-pressure loss of energy when you least expect it. Though that doesn’t help, of course. Having the stamina of a ninety-year-old is not helpful for your sexual prowess, nor is it particularly attractive to your chosen wooing partner. No, Pesky-Little-Brother-Cancer is much cleverer than he looks. He knows that he can get deep inside your mind and haunt your waking being.
‘Do you really think you can do the sex thing with me just sitting here in bed with the both of you? Not sure she’ll be happy doing it with me watching. With your pesky-little-brother-cancer watching. Not sure it’s right. Is it right? Not sure it is really. Have you even told her I exist? Oh yes, that’s how you got her into bed in the first place. So you see, without me, you’d be nothing. NOTHING. I can’t leave. Won’t leave. I am here for the duration. For the ride. If you do want to do it, the sex thing. If you REALLY want to do it, the sex thing, you will have to just pretend I don’t exist. Pretend I had never been born. Pretend all is normal. Does she think it’s normal? Is she doing it because of the cancer or despite it? Is this normal? Can she see your cancer under your naked skin as she’s fucking you? Can she? Can she? Can she? Can she see it? Your cancer. Can she see it and smell it? Your cancer. Me. Your pesky-little-brother-cancer. Me. Is it me she actually wants, not you? Me. Me. Me. Me she wants. Not you. Me. Me. Me.’
Because that’s the other thing about Pesky-Little Brother-Cancer. You just can’t shut him up. However hard you try. He keeps up a constant stream of consciousness that just bores into your soul.
And Pesky-Little-Brother-Cancer doesn’t just bore into your soul. He bores into every particle of your body, soul and mind, too. In fact, Pesky-Little-Brother-Cancer has managed to mess with your mind so chronically that he actually succeeds in planting the thought into your psyche that you could transmit the cancer by doing the sex.
You are there, you are both almost there. Almost. Almost there. Just at that moment. Just as you can spot the nirvana of ecstasy and release literally coming around the sexual corner:
‘Only me. Pesky-Little-Brother-Cancer. Just a random thought, nothing to worry about, just a thought to pop into your head at this moment, this moment where you are about to feel a little bit of joy and release for once. Just a thought for you to carry with you on this ride, on this journey. On this doing the sex thing. What if, what if, what if, what if?
‘What if this is catching?
‘What if just a tiny little orgasm-type moment will infect not just this present partner but the world? The whole world. Your infected seed will escape into the world and a whole new killer epidemic will be released. A “Raz-Cancer-Sperm-release-after-doing-the-sex-thing” epidemic. What if you are selfishly sacrificing the whole world for just a tiny bit of happiness? What if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if, what if?’
And then he’s gone. And so have you.
And it wasn’t just the unexpectedness of his guest appearances that was hard to take, it was the fact that every time I thought I had found some equilibrium, he would turn up to remind me that this wasn’t just a moment-to-moment changer, this was a life-changer. Or death-changer.
Pesky-Little-Brother-Cancer didn’t just steal the limelight, he did a career-defining, show-stopping nine-month song-and-dance number. And my personality found it hard to keep up. And the ‘me me’ I was rediscovering began to fade. People stopped seeing me as me. They saw me as Cancer Boy or Alien Boy.
Of course, sometimes he was great to hide behind. It was a relief to have people perceive you in such a defined way. It was curiously uplifting. Having spent twenty-eight years searching, here in one very foul cancer swoop, my Pesky-Little-Brother-Cancer gave me a full, fascinating and detailed personality, with a rich backstory to boot. And it was liberating. And, of course, that’s who I was. Most of the time. And most of the time I was indeed happy to banish the elephant and call a cancer spade a cancer spade. On some days Cancer ‘me me’ was freedom. Real freedom. But some days I longed for people to just see plain old me.
I wanted them to see me.
Not take one look at me and try not to frown.
I wanted them to see me.
Not take one step back before gathering themselves and only then take two steps forward.
I wanted them to see me. Not lower the tone and volume of their voice when they spoke to me.
I wanted them to see me.
Not someone they were impressed by for being so strong and brave.
I wanted them to see me.
Not my Pesky-Little-Brother-Cancer.
Wii CANCER
Hospital can be achingly dull.
To be fair, it’s not meant to be a holiday camp. There’s a reason why the staff wear white coats more than they do red coats. But even so, being a day patient having chemotherapy or – even worse – being on a ward for days on end can try the patience of a sane person let alone an adrenaline-starved, gambling addicted person. And online gambling wasn’t yet a thing back then so I couldn’t even distract myself with that. Thankfully.
Nick Hornby was my saviour. Revisiting the brilliant Fever Pitch and devouring his new novel, High Fidelity, soaked up some of the boredom, but that still left many long hours to be filled. So I resorted to my imagination. I say that slightly disparagingly only because I was often worried that, along with my self-diagnosed academic ineptitude, I didn’t quite have the creativity or imagination needed to make it in the arts. It took me a long time to cast aside such insecurities and it was moments such as these – long stretches of hospital nothingness – that helped me reconnect with that side of me.
One of my favourite daydreams was my virtual-reality (I was SO ahead of my time) imaginings of being inside my own computer game and fighting the cancerous aliens inside me. This was 1995. Space Invaders was SO eighties.
THE GAME
ߦ A single-player game.
ߦ Age: 8 to 108.
Object of the game: To terminate your tumour.
How to play:
1. Identify your tumour.
2. Get to know it. Inside and out.
3. Identify its location.
4. Identify its size.
5. Hunt it down.
6. Terminate it.
GAMING ADVICE 1
Always be vigilant. Take nothing for granted:
ߦ The Tumour© has a life of its own.
ߦ The Tumour© may randomly double in size when you least expect it to.
ߦ The Tumour© may lay dormant for any length of time and appear when you least expect it to and in the most unlikely places.
WEAPONS
A) Chemicals
ߦ Identify the right chemicals for the job.
ߦ Track them down.
ߦ Target The Tumour©.
Be aware:
The chemicals also have a life of their own. The chemicals have the capacity to do a 180-degree turn on the spot and attack you as well as your tumour.
B) Radioactivity
ߦ You have access to radioactive zappers that target with pinpoint accuracy the weak spots of The Tumour©.
Be aware:
Radioactive zapping is a long, hard and tedious way of attacking The Tumour©. It requires patience and endurance. It will drastically reduce your energy levels.
HOW TO WIN
This is a game of endurance.
This is a game of perseverance.
This is a game of patience and application.<
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This is a game of focus and dedication.
ߦ You have nine lives before it’s game over.
ߦ Your ability to focus on ‘how’ to play the game will be continually impeded by your inability to stop yourself wondering ‘why’ you have to play the game at all and ‘if’ there will ever be an end to the game.
GAMING ADVICE 2
You are not only fighting The Tumour©, you are also fighting the very weapons you are using to fight The Tumour©!
Be alert at all times.
USER REVIEW
This is a game I didn’t want to play but I was forced to. I was given no other choice. I am not a gamer by nature but the object of this game couldn’t be simpler. The only drawback is that I have to learn the game at the same time as I am playing the game. There is no trial run.
The game seems to take forever to play. Time passes and I feel calm because I have found some sort of even keel that I didn’t think I’d find when I first pressed play. I have no idea whether I am close to winning or not.
As I am solely focused on reducing the size of the evil tumour, I hardly notice how close to the finishing line I am. I keep going. I’m almost there. I reach for the zapper to finish off the little fucker, and out of nowhere and through no fault of my own, The Tumour© turns to face me, does a cartoon skidding halt and mockingly trebles in size. I lose a life and have to start all over again.
There is no worse moment in the playing of this game than this! It feels like I have lost much more than just one life. Everything I’d worked hard for. Gone. All those strategies to move me along in the game were seemingly for nothing. The game makes me feel empty. My insides that were so filled with hope and anticipation and pre-winning euphoria are now just a barren husk. It seems like an almost impossible task to take a deep breath, pick up the game, press go, and start all over again. It would be easier to just give up.
The finishing line is invisible yet it’s taunting me. The sound effects on the game seem to have been turned up to eleven and they are whispering:
‘You’re not going to make it.’
‘It’s too hard.’
‘You’re too tired.’
‘You will never get to the next level.’
‘You’re fucked’ (it’s an adult game).
‘Give up.’
The thought of carrying on makes me feel nauseous and exhausted and angry. It would be so much easier just to admit defeat. But the pause button keeps flashing. It’s winking at me. And the wink is a glimpse. Or a clue. Or a reminder – that maybe I am not starting from the same point that I did way back whenever. Maybe I learnt more than I think I did when I played the game the last time. And maybe that’s the point of this game:
A series of learned responses that will help me get further every time, give me more coping strategies when I have a setback and fill me up with an unexpected amount of confidence and patience that, eventually, may help me make it over the finishing line. And even if I don’t quite make it over that line, the very act of playing the game may have afforded me a tiny respite from the insanity of it all.
So all I have to do is press restart and let my instinct and my spirit take over and try to enjoy rather than endure the game. The effort of trying to enjoy it will often feel just that. An effort. But there will be times when I do forget myself and it will feel like I am travelling through the game with ease, maybe even with a certain amount of thrill and pleasure. And that’s much more than nothing.
So I press the flashing restart button and begin my next life.
That’s Wii Cancer. It’s just a game.
EMOTIONAL ROULETTE
Cancer does throw up (often literally) a multitude of emotions.
Some obvious. Some completely unexpected. They can appear at any time and are often triggered by the most unlikely of scenarios. You try to fight them but they are bigger than you and often somewhat uncontrollable. Sometimes it is magnificent just to surrender yourself to an emotion and have a spectacularly self-indulgent wallow.
We are allowed to wallow for a small percentage of the twenty-four-hour cycle.
It’s in the Cancer Contract.
THE CANCER CONTRACT
You may have an hour of wallowing a day if for the other twenty-three hours you don your Cancer Poncho and square up to the bastard face-to-face.
Too much wallowing leads to guilt. And there’s so much guilt flying around already.
ߦ Guilt if you’re ill:
You think you’re a burden. You think that people are putting THEIR lives on hold for you. And you feel guilty about that. But at the same time you have a burning desire to scream out: ‘Look after me – take care of me.’
And sometimes we do ask for help and it feels good, but even when it feels good we feel guilt as it seems self-indulgent somehow. So we never scream as loud as we want, and however loud we do scream you know it won’t make it better. It just may make us feel a touch better for one brief moment.
And some of your friends are awkward around you and they don’t really know how to speak to you and it should be you that puts them at their ease but because you feel a bit shit you haven’t really got the energy to do so. And you feel terrible guilt about that.
ߦ Guilt if it’s your loved one who is ill:
You think you are not helpful enough, and anyway why can’t it be me that’s ill and not them? You’d absolutely swap places if it meant that you didn’t have to see them go through this hell.
ߦ Guilt for being thankful that it isn’t you who is ill:
GUILT GUILT GUILT.
A Jew with cancer! My guilt cup runneth over.
And there is no telling what emotions will appear, or when they will appear or indeed why they will appear.
Random emotional outbursts may occur.
With me, the pressure of being the I at the centre of the emotional hurricane seemed to unlock coping skills I never knew I had. There is an often unspoken expectation from your friends and family that you might be feeling a certain way. They normally expect you to feel worse than you often do, so it’s sometimes hard for them to get their head round you being so chirpy. It makes them uncomfortable even.
‘I have steeled myself to be in carer mode. I have practised my bedside manner and my soft, whispery sympathetic voice. I expected you to look like you have cancer. I didn’t expect you to be jolly and high-energy and inappropriate. I am not prepared for this! At all!’
Of course, sometimes we do feel shit but we are so adept at hiding it that they are more confused than ever.
My random meltdown moments often happened alone. Sometimes they were not so random. They could easily be explained. It’s just that they would appear when I least expected them to.
It was September 1995.
I was replete with mouth ulcers. I couldn’t talk, couldn’t eat and my white count was lower than the Titanic. I wasn’t in a good way. Yet my dear friend, the Chairman, was getting wed to the soon to be Mrs Chairman and I really wanted to be there.
September 23rd, the date of the wedding, is etched on my mind. Just four or five days earlier, Oral Armageddon had started. I was being monitored 24/7 and was on intravenous antibiotics that were so strong that the main side effect was a terrifying twenty-four-hour extreme flu symptom cycle.
Freeze, freeze, freeze, boil, boil, boil, extreme boil, extreme freeze, extreme boil, shakes, shakes, shakes, shakes, sweat, sweat, sweat, freeze, freeze, boil, boil, shit, shit, shit.
That was the Thursday. The wedding was on Saturday. It was in Cambridge. I was in London. I wasn’t going to make it. Or so everybody thought.
Everybody. Except me.
The doctors were insistent:
‘You can’t go. You are ill. Very ill. You can’t possibly leave hospital, get in a car, travel to a wedding, be at a wedding with a hundred and fifty other people – when your immune system is practically defenceless – journey back to London and return to hospital. You can’t do it. Physically you can’t do it. You are on
an intravenous antibiotic drip twenty-four hours a day. You are seriously ill. Do you hear me? You can’t go. You just can’t. It’s impossible. I’m sorry but you can’t go. You can’t. You can’t.’
Now, forgive my French, but you can’t say can’t to a cunt.
A belligerent, stubborn, truculent, twenty-eight-year-old cancer cunt.
All through my illness people tried. And people failed.
This was one of my closest friends marrying a woman who I adored. I was very ill. I may well have been close to death. Things weren’t looking that good. Either as a prognosis or as just my head.
So it was a cancer no-brainer:
If I didn’t go and I made a full recovery, I would always regret it. And if I didn’t go and ended up dying, well, then, it was clearly pointless not going in the first place.
So I’m going.
How I’m going – logistically, physically and emotionally – is a whole other question. But I am going. Once the doctors and nurses looked me in the eyes, they knew there was no point trying to stop me.
Because I’m going.
I still couldn’t really speak because of the ulcers but they understood what I meant:
‘Eyer oo ayp meengo oor ayl ichard eysewel.’
Which roughly translated meant:
‘Either you help me go or I’ll discharge myself.’
My mother wanted to help me. She thought it was crazy that I was intending to go, but she knew me well enough to know she couldn’t stop me. She respected me enough not to try. But she wanted to help. Needed to help even. She offered to drive me to Cambridge, wait for me and drive me back. But somehow I persuaded her and myself that I was OK to drive. Myself. To. The. Wedding.
I wasn’t OK. But that’s OK!
So, armed with a mountain of drugs and with strict instructions to be back at the hospital no later than ten, I set off for Cambridge and the wedding. It was 1995. There was no sat nav. I had a map. I was seriously hoping I didn’t get lost as I’m not sure any passer-by could have coped with an alien boy in a suit popping his huge head out of the window and saying: