Death and the Elephant

by Raz Shaw

  At first I would respond.

  ‘Ooo, reply, reply, reply, oh yes the world, the world, strange flirting reciprocation, ooo, reply, reply, reply.’

  I was going through the talking motions but the whole time I had my eyes glued to the oversized syringes. I was pondering how ridiculously slowly that red liquid was entering my veins. After a few weeks of treatment, the flow of the liquids became a nightmare and the sweet sound of the nurse’s voice sounded like the grating of a hundred fingers on a hundred blackboards.

  What I wanted to say to the nurse was:

  ‘Please. Please. Please. Stop this constant, inane, brain-aching chatter. It’s not helping. Not. NOT. NOT. Please, please, please just give this cancer boy a bit of fucking peace. Is that too much to ask?’

  What I actually said was nothing.

  Well, when I say ‘nothing’, what I mean is that I developed this tactic of fake sleeping. I would spend the first couple of minutes ‘reply, reply, reply’ and as I watched the beginnings of the liquid pumping into me, I would do some really bad ‘I’m drifting off to sleep’ acting. I had to be careful that it didn’t get confused with just resting my eyes as that would leave the door open for more nurse ‘chat, chat, chat’. So I had to put in a few fake comedy snores here and there.

  I was in a cartoon after all.

  Obviously I wasn’t just escaping from the sound of the nurse’s voice. Even I am not stupid enough to think that. I surprised myself by not being able to just shrug off chemo as a thing that had to be done. It became an immense psychological obstacle. The syringes and the chemicals became symbols of the uncontrollable cells running amok inside me. The whole routine became the enemy. I think the fact that I couldn’t load the gun and fire the bullets myself but had to rely on someone else was just another way that this cancer thing made me feel like a child again.

  It was all out of my control. All way out of my comfort zone and in a place where I was unable to use my charm or even my perverse humour to escape from the grim reality that was now.

  When the darkness comes (and however much you might think that you are different, the darkness will come), don’t fight it off too hard. You need to allow a space for it. A space big enough for you to feel it but not so big that you can’t control it. If you allow it to envelop you too much, the effort of shaking it off will be immense. And, believe me, you’re going to need all the strength you’ve got in the months to come. But if you dismiss it too lightly it will turn up and torture you when you least expect it. And torture is normally not fun. Normally.

  Cancer was the drill sergeant major, pinning me down. Its spittle in my face:

  ‘WHAT? YOU THINK THIS IS A GAME? YOU THINK THIS IS ANOTHER OF THOSE SITUATIONS THAT YOU CAN JUST CHARM YOUR WAY OUT OF? NO. THAT SELF-DEPRECATING CHARM SHIT DON’T WORK ON ME. NO, NO. THIS IS REAL, MOTHERFUCKER. THIS IS REAL FUCKING LIFE. YOU HAVE CANCER, MOTHERFUCKER. THIS AIN’T NO GAME. YOU CAN’T FLIRT OR JOKE YOUR WAY OUT OF THIS ONE, BOY. BECAUSE THAT’S ALL YOU ARE. A BOY. JUST A BOY. THIS IS REAL-FUCKING-LIFE RIGHT HERE. OR DEATH. THIS IS NOW. RIGHT NOW. GET USED TO IT. BOY! LIFE OR DEATH. YOU DECIDE!’

  And when cancer gets noisy, sometimes the only thing to do is just close your eyes, put your hands over your ears and go:

  ‘BLAH, BLAH, BLAH, BLAH, BLAH, BLAH, BLAH, BLAH, BLAH.’

  Don’t knock that tactic. It’s a good one. Sometimes it’s the only way.

  Escape is escape is escape is amazing. Escape feels like you have been handed this uber-tricky situation solely to challenge yourself into switching on the engine of your under-used imagination! And that’s the genius of your mind. Of your dreams. You can escape to anywhere. Escape from anything. For a moment or two. Or even three. If you’re lucky.

  On the flip side, curiously, sometimes embracing the harsh reality of the situation, facing it head-on, can be weirdly liberating, too.

  For instance, if you have 350 mouth ulcers and you can’t speak and you can’t eat and it is a military operation to take even one teaspoon of lukewarm ‘Not-even-Heinz’ tomato soup – sip of water, weenie bit of soup, washed down by a tiny drop of water, soup, water, soup, water, soup etc., adding up to one teaspoon of soup every ten minutes while your mother sits next to you trying to hide the fact that this is breaking her heart – what would be the oddest or most perverse thing you could do?

  Anybody?

  Well, with 350 mouth ulcers, the most perverse thing you could do might be to take a large salt and vinegar crisp between your fingers. To open your oral cavity that has the 350 mouth ulcers in it. To slowly deposit the salt and vinegar crisp in your mouth-ulcer-ridden orifice – being very careful not to break it. The crisp, that is, not the mouth. To rest the salt and vinegar crisp on your tongue and then slowly bring your tongue up so that the crisp connects to the roof of your mouth!

  Why would you want to do that? Why? WHY?

  Well, good question.

  My only answer would be the same as people give to the perennial question, ‘Why climb Mount Everest?’

  Cos it’s there!

  I will never have this opportunity again (I hope), and so in the spirit of wanting to embrace the uniqueness of this cancer journey it is something I just had to do. Plus, in truth, I was aware that it might make a good story for any book I may think about writing in twenty years’ time.

  It also taps into the heart of what I am trying to say.

  This was a special time. It might not be especially wonderful. A lot of the time it was specially fucking awful. But it was special:

  ߦ The more I embraced it.

  ߦ The more I tried to take something new from every difficult moment.

  ߦ The more I forced myself to escape from the darkness by exploring new coping strategies.

  ߦ The more I used this opportunity to do things and try things that I would never imagine I could do.

  The more I would surprise myself by how much inner strength I had and by how possible it became to enjoy rather than endure the now.

  And, twenty years on, I am grateful to the me that I was back then for pushing myself not to take it lying down. Literally. So many of those decisions inform who I am now and the choices I make every day. Either consciously or, more interestingly, subconsciously. Any insight I may have now comes from the twenty-eight-year-old me not sleepwalking through it all. It comes from him being curious about experiencing each moment to the full, no matter how crazy that might feel to others at the time. Hence the crisp thing.

  Having said that, my pathological hatred of the act of having big, multi-coloured chemicals injected into me seemed to be quite contradictory to the idea of me being open to all new experiences on this journey. I wanted to go through this illness with my eyes wide open but I wanted to go through the biggest chemical procedure within this illness with my eyes wide shut.

  And to this day I don’t really know quite why that is. It is something to do with the psychological and the emotional being too close to the surface. They felt like they would suffocate me with their all-pervasiveness. They throbbed my head with too much ‘stuff’. Those too overpowering fuckers, Mr Psychological and Mr Emotional, sat like ticking bombs on my forehead and deliberately pressed down and down and down. Hard. They wanted me to know they were there. Wanted me not to forget why I was there. They pushed so hard that everything was a blur. I couldn’t escape them. And I think that was the point.

  This was a weekly moment where I couldn’t use my Raz tools to set myself free. And that made me feel bereft because my toolbox has always been my escape route. My toolbox has always been equipped with weird shit that could get me out of most scrapes.

  In the Raz Toolbox, there are a number of fail-safe tools. These include:

  THE FLIRTATION TOOL

  The flirtation tool guarantees that you can soften most situations with a smile, a touch, a sparkle or just a wee bit of sexual frisson (rather than a sexual frisson bit of wee; that’s completely different). Raz likes to think the flirtation tool works well wit
h most people but it is especially successful with older women and gay men. The flirtation tool can also be utilised with straight men. You just have to wrap it up in a somewhat less sparkly form.

  THE INAPPROPRIATE TOOL

  The inappropriate tool is more useful than anyone will ever imagine. It is pure escape. It is a major weapon of mass distraction. It is deflection. It’s used like this: you’re in a situation where you or someone around you is feeling awkward. For whatever reason. You explode open the inappropriate tool, and people are so busy commenting and outraging about your wilful act of inappropriateness that they forget the utter awkwardness that just preceded it. Simple.

  THE DAD-JOKE TOOL

  Don’t ever underestimate the power and usefulness of the dad-joke tool. It’s yet another deflection tool. It can be used in most situations but it’s most helpful when needing to bring an unwanted conversation to an abrupt end. Imagine the scenario. You are having dinner in a Greek restaurant and the dinner bore is boring the arses off the other guests. (By the way, the old adage DOES apply here: if there’s five of you at a dinner table and you see no dinner bore, guess what that makes you?) And the dinner bore doesn’t stop. He goes on and on and on. And even the waiter coming up barely stops him. So you put the dad-joke tool into operation.

  The Greek waiter says: ‘Can I take your order?’

  And you say: ‘Can you recommend something? This menu’s all Greek to me!’

  Now I can honestly say that particular joke is so bad, even I wouldn’t use it. But I needed to visit extremity to make my point. My dad jokes are much wittier and more erudite. The point is that a really bad dad joke can hang around long after the groans. So if you are really smart, you will use that moment to deflect the attention away from the dinner bore onto something or someone more interesting. Like yourself for instance!

  Like I said, for me these tools are fail-safe. They have been my protection and preservation for all the years I care to remember. But for some reason, in the maelstrom of chemo, my toolbox and everything else I had to protect myself with was ripped from me. I was naked and disarmed. A defenceless child.

  And nothing helped. No distraction techniques, no tools, nothing. In the purity of those endless chemo minutes, there was no escape. And those minutes were endless. Nothing could speed them up. I was swimming in slow motion, underwater, against the tide. And it seemed like it would never end. Make it end. Make it end. Make it end. Make it end.

  The longest journey on the longest day into the longest night.

  The rest of the time I was quite good at finding distraction opportunities, but on chemo day Mr Psychological and Mr Emotional were boss. They would command you not to forget. They would command you to have at least one hour a week where you were awake to the situation you were in. Bastards. On that day at that time, you had zero power, strength or wilful desire to fight them.

  Oh, and how does a salt and vinegar crisp feel in a mouth full of 350 ulcers?

  DUH! It feels like the most painful fucking thing you have ever felt in your whole life.

  It feels like 350 daggers jabbed into your mouth at once.

  It feels like Oral Armageddon.

  I’M A SECRET POSITIVE THINKER

  I’m a secret positive thinker. I am. At least I think I am. I’m fairly positive I am. Or am I a secret wannabe positive thinker? I would love to be a truly positive person. On the rare occasion that I’ve met one, I’ve always envied them. I did when I was ill and I do now.

  When I was ill I hid my positivity jealousy under a veil of cynicism. And only at night, alone, under my covers, would I unveil myself and will myself to be positive. I tried really hard. I really did. But it was just too abstract a concept for my singular brain. I would lie there in the middle of the night, close my eyes, scrunch my whole face up tight and desperately try to bewitch my way to positivity land.

  Positive thoughts.

  Come on, Raz.

  Positive thoughts.

  Come on, Raz.

  Come on.

  I hear a deep growl coming from the heart of my soul. Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

  aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

  aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

  aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

  aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa.

  P O S I T I V I T Y.

  You can do it. Come on.

  Come the fuck on!

  Wait a moment. Just one moment. Before I do this, what is this? What is it? What exactly is a positive thought? It really does seem so abstract to me. More of a concept than an actual active thing. What actually is it? Hmm?

  ?

  ?

  Never mind, let’s do this.

  Let’s do positivity.

  OK. OK. OK.

  C’mon, Raz. Try again. C’mon!

  OK. OK. I am squeezing my eyes tight shut. Squeezing. Squeezing. Squeezing. My fingers are clenched. My bottom is clenched. Every single little bit of me is clenched.

  Squeeze.

  Squeeze.

  Come on. It’s almost there. I know it. I can feel a tiny positive thought about to poop out. I mean pop out.

  Yes? Yes? YES?

  Nope!

  Sometimes, when I was under those covers trying to force a bit of positivity out I made myself laugh at how ridiculous that actually was. How maddening. How odd. How funny. And I immediately found a semblance of serenity in that thought.

  But the act of trying to feel positive and not exactly succeeding often feels worse and more painful than not trying at all. I am grateful for my cynical bones as they kept my mind from flying off in any direction, high or low. They allowed me to at least try to exist in that moment. They allowed me to at least try to see life as it really was and respond to it accordingly. And that’s quite a healthy way to exist when you’re not healthy and you’re worried about not existing.

  Rather than trying to be positive in the abstract , it’s much more about not being negative.

  Not Being Negative is much more positive than any Positive Mental Attitude mantra!

  Not Being Negative is very day-to-day doable. Everyone can do it. Anyone can do it.

  On a day-to-day basis, we are Not Being Negative loads of times, hundreds of times even.

  The reason that Not Being Negative really worked for me is because it released me to forget yesterday and not to worry about tomorrow. It released me to take today and try to just live it. Maybe that’s just positivity wrapped up in another form, but there’s much less disappointment in looking at things that way.

  Positivity feels intangible. And because it feels so intangible and abstract and out of reach, I was left with that nagging, sinking, empty feeling inside that I was somehow letting the cancer club down and, more importantly, I was letting myself down. And that definitely wasn’t healthy. Age has taught me how to embrace the moments in life, however fleeting, where positivity feels real and active and right. And that’s the point. True positivity has to go hand in hand with sometimes harsh reality; otherwise it’s just vapid froth and air.

  People always asked me if I thought I was going to die. Did I think about death? Yes, of course I did. It’s in the cancer diagnosis contract. Did I think I was going to die? Well, no, I didn’t. I thought about how people might react if I did die (I love a drama), but I didn’t actually think I would. Die. And that’s absolutely about me living my life in a ‘not negative’ way. And that really worked for me.

  CONFIDENCE

  A close relative of positivity is confidence. Confidence can be both how you feel inside and how you present yourself to the world. They are not mutually exclusive. Indeed, sometimes one fuels the other.

  You are feeling shit inside and have no confidence. In yourself or your ability to fight this fucker. Sometimes just faking it and presenting to the world an external picture of someone who is bright, breezy, puffed-up (not by steroids but by life) and has a certa
in swagger can somehow fool yourself into believing that you are actually feeling those things inside. You forget yourself for a bit and believe your own hype. It can help. It can alleviate things for a while. Even a short while. And that’s better than no while. The comedown can be quite major, though. Fake confidence cold turkey.

  When my brain kicked in and the positivity induced (fake or otherwise) endorphins disappeared, my insides were reminded of my previous pain. But, faking it is a coping mechanism and for a while I did believe it. More than that, it felt good. So now the trick was to try to fake it for longer each time. And the longer it got the more real it got, and the more real it got the less I had to fake it, and the more I believed I could deal with the illness.

  More than that, some days I sailed through it, feeling smug that I was more than coping. In some perverse way, I was enjoying it. And that enjoyment was a lot to do with feeling proud of myself for finding ways not to surrender to the anguish. Not to feel sorry for myself and not to let the negativity win. A whole lot of NOTS to untie.

  It’s all semantics really. It doesn’t matter what we choose to call it. Being Positive. Not being negative. Just words. The more I faced up to the reality of my situation, the more I sculpted my environment to help me deal with that reality, the less thought I gave to tomorrow and the more equipped I felt to try to enjoy whatever life chose to throw at me today.

  CANCER VERSUS GAMBLING,

  PART TWO

  In the seemingly endless months between June 1995 and April 1996, I was fighting three separate and yet intrinsically entwined battles:

  1) ME VERSUS STAGE 4 NON-HODGKIN’S LYMPHOMA

  This wasn’t really a fair fight.

  I was one lone, slightly odd, belligerent, would-be funny north London Jew.