by Raz Shaw
Nurses have become my heroes. I will never, ever be able to find the right words to express how remarkable they were and are. Calm, patient, understanding and more caring than should be humanly possible. The nurses at the Marsden seemed unflappable. They also seemed flirtable with. Both the men and the women. Now, I have to point out that I knew I wasn’t in a Carry On movie. These nurses were totally professional and dealt with a young man’s desperate flirting, not by going behind the bike sheds or by delivering a bed bath de-arouser, but by giving enough back to feel like I wasn’t being ignored but not enough to feel like I was getting somewhere. Story of my life! And it just meant that I didn’t feel I was in the most alien place in the world. It meant that I could bring a tiny bit of me into my new environment. And a nurse’s ability to recognise the needs of the individual is what sets them apart from mere mortals.
I can’t say hospital ever felt like home. Or even felt like the norm. But sometimes it got quite close. And that felt good. And comforting. And that was pretty much all due to the brilliance of the nurses.
So with my routine sorted and my flirting possibilities identified, me and my illness set out on our journey together. Side by side, we climbed the emotional Pyrenees on our very own Tour de Cancer. I knew the mountainous journey ahead would often be gruelling, sometimes vicious, now and again heart-breaking, and once in a while sublime, but I would try very hard to steer away from second-guessing the future.
Tomorrow is tomorrow is tomorrow. As Shakespeare sort of said.
POV CANCER
Having cancer is kind of surreal. It feels like you are the narrator of your own cancer movie. The movie is from your point of view and the camera has been planted in your eyes. In this movie, you get to judge other people’s reactions to you. The young man with cancer. You, the viewer, get to share that dark existence with him. The dark existence in his head in response to how someone reacts when he tells them he has the C word. Or CA word.
That is exactly how it felt. Being behind the lens and observing those around me, I tried really hard not to judge people. Because if you have expectations, they will inevitably lead only to disappointment. And that in turn will lead only to sadness. And that’s exactly the kind of emotion you are working hard to stave off. Sadness in this context feels a little bit like self-pity, and self-pity can fuck right off right now.
I am trying to avoid any feelings that are implosive. That is to say any emotions that eat away at my insides. After all, there’s a twelve-course tasting banquet going on inside me right now and I need to leave room for the James Bond of chemicals to kick the shit out of my unwanted guests.
CANCER HOTLINE
So I knew I must be open. I must be inclusive. I must fake it when I don’t feel it. I must welcome you into my cancer world with open arms. Big Jewish open arms. Topol would have been proud! Word spread very quickly and the phone started to ring non-stop. And I answered thus:
‘Hello, Cancer Hotline.’
Some people didn’t react well to this greeting. It made them feel uncomfortable. My mother didn’t like it at all. Or my cancer jokes. Why would she? The parent losing a child thing is so unimaginable that you don’t want to be constantly reminded of the possibility by your warped youngest child.
‘Read all about it. Youngest child has cancer. Youngest child riddled with cancer.’
And some people are going to feel uncomfortable and some people are going to back off, but as much as I could in some way create an environment that induced the people I wanted around me to stay around me, I couldn’t single-handedly save some people from their own fears. And so I guess part of my – albeit subconscious – reasoning for being so openly ‘Cancer, Cancer, I have Cancer’ was to intensify this moment in order to uncover the people who stayed and the people who ran. And it wasn’t/isn’t a judgement on the runners. It was much more to do with my desire to surround myself with people who enjoyed the me that I was at that moment rather than the me they needed me to be.
I didn’t want people around me who were going to look at me and see my death.
I didn’t want people around me who were going to look at me and see their death.
I just wanted people around me who were going to look at me and see me.
UNCONSCIOUS AVOIDANCE
And people did back off and that’s totally OK. I am not sure they even knew that they were doing it. They were victim to it like I was victim to it. Their implosion was not conscious. In their head they were there for me. The fact that they hadn’t said that or, indeed, hadn’t said anything at all has never occurred to them. It’s unconscious avoidance. And it’s hard, real-life stuff. And it is sad. And it is painful.
But, hell, if we were all normal functional human beings, the world would be as dull as shit.
And if I were to confront them about it – those ‘backer-offers’ – I think they’d be mortified. They’d get that cold-sweat-down-the-back-of-the-neck feeling that a director gets when he puts his work in front of an audience for the first time and realises he’s made a glaring error. They’d suddenly see themselves and the truth with crystal clarity and they’d feel like death. And I didn’t need any competition in that department, thank you.
FRONT-ROW SEAT
Having a front-row seat to people’s reactions was a luxury. It was the most fascinating and unique part of this whole illness thing. It was also almost an art form. Fantastic manipulation training for being a theatre director.
Directing is all about getting to know someone and then working out how to get the best out of them. The moment you start treating everyone in one uniform, blanket way, your number’s up. You will end up with something bland, generic and expressionless.
It’s the same in the theatre of cancer.
You must decide:
a. who you want accompanying you on this journey
b. how you want those people to feel and behave on that journey.
Once you have figured that out, you go into manipulation mode.
It is my job to set up the environment that would best allow those people that I want here with me to feel as comfortable as possible.
That’s the point I think that some people forget.
You are the most powerful person in that room. You have the cancer. You are the elephant. So if you aren’t comfortable, nor will they be. You have the power, so you have to set up the right environment.
It often comes as a real surprise the way people react. Sometimes their reaction can be wondrous and delightful, and at other times it can be terribly disappointing. The trick really is to try to ‘treat those two impostors just the same’. But I can’t deny it. Withholding resentment when you are already straining not to feel sorry for yourself can be really hard.
But we have to be better than that. Bigger than that. Because, like I keep saying, we have the power, not them.
This is my movie and if I want to get good, relaxed performances out of my co-stars, I need to create the perfect setting for that to happen.
MY CAMERA
My camera sees people in extreme close-up.
People looking at me, looking at them, looking at me.
My camera captures in tiny detail their reaction the first time they see me.
Do I look the way they expected me to look? Do I look worse or better?
However brave a face you care to show the world, hidden beneath the bravado is a child. A lonely, wide-eyed child who wants to run and keep on running. You know you can’t. You know you have a duty, not to yourself, but to the people who believe that you are strong, and that the strength of your personality will pull you through the hell. So you don’t run but you sure as hell want to.
In extreme close-up I am able to see exactly how much effort that particular person is putting into this moment in order to make themselves seem relaxed in my presence. And people do put so much effort into controlling their facial expressions. They think I can’t see how uncomfortable they are. The amount of effort they are putting in is both beautiful and hear
t-breaking.
I am able to adjust my face to theirs, my body language to theirs, until they eventually loosen up, drop their façade and be the person I want to visit me rather than the person they think I want them to be.
It’s a complex movie that needs more than one viewing to understand it.
It’s a movie that tries to get under the skin of a cancer patient’s visitors.
CANCER CAMERA
The cancer camera can see through any membrane. It can pinpoint rare emotional responses. It cannot be purchased. It is unique to you and is guaranteed to make you an award-winning director.
The cancer camera not only shines the light on those who have been kind enough to come and see you, it also affords you an opportunity to not be you. For a moment at least:
ߦ I am De Niro in an early Scorsese movie. I am more aggressive than I need to be and my visitors are not comfortable at all. ‘Are you looking at me?’
ߦ I am in a 1970s disaster movie. I am Paul Newman. I have cancer but even so I am still the one leading everyone out of the burning building. I am the stunningly good-looking one who risks his life to save the world. And I play pool and I don’t sweat.
ߦ I am Bill Murray in Cancerbusters. I slay cancer. Mine and everyone else’s. I do it on the back foot with a twinkle in my eye. I am the wittiest man alive and my one-liners are to die for!
ߦ I am Hugh Grant in a Richard Curtis movie and everybody is reciting famous poems by my bed and weeping. And Rowan Atkinson is a vicar about to read me the last rites. And it’s all a bit awkward when he realises I’m a Jew. And we all laugh and weep and it rains but nobody notices.
I was me. Still am.
I fall asleep.
You, my visitor, are still there when I wake up. That’s nice.
My camera keeps running.
Nobody shouts, ‘Cut. ’
There will be no wrap party. For a while anyway.
WHY ME? WHY NOT ME?
Every day I would wake up and for just a split second, I would think: I may be cancer-free. It may have disappeared or it may have all been one long Bobby Ewing dream.
But then reality would bite and I’d realise that this wasn’t a soap opera. Not a tele-visual one anyway. It was what some people call real life.
And I do have cancer.
And I am going to have to ‘battle’ again today.
And when you’re feeling like shit and you have that taste in your mouth that’s like a cross between a rusty spoon and mild cow dung, and you are too tired to sit up, let alone get out of bed, it’s very easy to cry inwardly, ‘WHY ME?’
Inward crying is less embarrassing than outward crying. Though outward crying may be more cleansing. In fact, it’s the new thing. Tantrum yoga it’s called. It’s designed to have you breathe, dance and scream your way to better health. I kid you not. You can get DVDs on it and everything!
Let’s try it now:
‘WHY ME? WHY GIVE ME CANCER AND NOT THAT CREEPY ANNOYING STARING MORON OVER THERE STARING AT MY BALD FUCKING HEAD. WHY? WHY? WHY ME?’
Shit, that was a bit loud. The creepy annoying staring moron doesn’t look creepy at all. Or a moron. He just looks scared. Of me.
Anyway, how helpful is ‘WHY ME?’?
I don’t see how ‘WHY ME?’ gets you anywhere at all. Not only is it completely energy sapping but it is also pointless. Totally pointless.
You do have cancer.
FACT.
Pondering on why you have it and whether someone pointed their big lottery finger and chose you is not only irrelevant and ridiculous but it will also eat away at your insides. And you already have that going on.
‘Why Not Me?’ is:
ߦ Much more fun.
ߦ Much more empowering.
ߦ Much more ego-fuelled and unique-making. After all, one in three people get cancer at some point in their lives. You don’t want to be left out.
‘Why Not Me?’ is also a much more revealing and rewarding conceit.
Without the insufferable notion of ‘be positive’, ‘Why Not Me?’ injects you with positivity by stealth.
It also alleviates some guilt as you become the hero who saved someone else from that same fate.
I took one for the team. The cancer team.
Or should I say the ‘I don’t have cancer, never will have cancer’ team.
If only they knew, they would hold me aloft on their shoulders. Their shoulders that lead to heads with hair on them.
ߦ They would call me a hero.
ߦ A prince among all men.
ߦ Albeit a prince with an illness.
ߦ But a prince nonetheless.
ߦ I don’t graduate to King unless I…
ߦ Well, anyway, Prince will do.
And ‘Why Not Me?’ is also so much more than that.
It’s a celebration of the lottery of life. It’s actually an affirmation of me. Of my propensity to be able to cope with this mystery inside me.
‘Why Not Me?’ is my all-knowing-imaginary-so-called-superior-being and it is saying:
‘Hmm… let’s choose Raz, he has the capacity, the personality and the soul to deal with this major life-threatening illness; he has the strength of character to “enjoy” the multiple challenges this illness will set him and he will face it head on.’
‘Why Not Me?’ should make you smile, should make you proud, make you feel unique, make you want to share it with your friends and glory in the insight it gives you.
And that never goes away.
It has lived with me every day for the last twenty-two years and it is here now.
It is the very reason why I want to share that insight with you.
The very thing that propels me forward even on those days when doors keep slamming against my soul.
WHY NOT ME?
THIS TOO SHALL PASS
Having cancer puts you into a world of unknowns, intangibles and the indefinable. It puts you into a world that to some degree you have no control over. It leaves you at the mercy of white cells inside you and white coats around you. For evil or for good, it’s out of your hands. However strong you are, however well you seem to be dealing with it all, you really can’t do it alone. And even if you are surrounded by a mountain of supporters, well-wishers and carers, sometimes you feel a loneliness that is unlike any you have ever experienced.
It is like being trapped, on your hands and knees, in a hole in the ground. You can feel the walls very slowly closing in around you. You can’t see them closing in because it’s pitch dark but you can feel them and you know you have to get out of there. You know you have to get out of there but you are on your hands and knees and you can’t even remember how to crawl. You have lost all sense of your own humanity. Lost all awareness or understanding of how this human that is you behaves, thinks or moves. You have even lost the rational thought mechanism that would allow you to understand that you have to escape before the walls choke you to death. If you had rational thought right now, that would surely trigger your brain to remind you how to physically move, which in turn might enable you at least to make an attempt to get the fuck out of this hole. And even if you could do that, you wouldn’t even begin to know where to go. There is a tiny taunting speck of white in the distance but it never stays still long enough for you to realise that heading for it is your ticket out of there. And there are millions of people around you, but you have no concept or desire to communicate with them. Because you know they can’t help you right now. You know that the only person who can help you now is you.
And you are no help at all.
And this is isolation right here. This is what true loneliness is. And at times like this you just have to ride it out because it will pass. When and how and why, you have no clue. But it will. Pass.
HUG THE TUMOUR
The hardest thing to explain to anybody is how it makes you feel to know that the cancer is inside you. Has invaded you. For me, as I’ve said, it was never a ‘why me?’ thing. But it was a thing. Inside m
e. Inside ME. And its presence was weird and invasive and intrusive. And its presence didn’t upset me, it just annoyed the fuck out of me. Because I don’t like hanging out with big crowds of people at the best of times. Plus, I’m a control freak. So an ad hoc party at my house with a gallon of gate-crashers is my kind of hell. But you get used to it. You do. And you learn to embrace it, and them, to some degree. Or at least I did. Embrace them.
And that was hard for me, but hopefully harder for them. If my tumour was anything like me, it wouldn’t have liked to be touched, let alone embraced.
I like the idea that, just to annoy it, you might give it a big old smothering hug now and again. The tumour doesn’t know what to do with this hug. It feels like a spotty, excruciatingly embarrassed teenager when his mum kisses him in front of his friends and wipes his face with a licked handkerchief. Maybe embarrassing the tumour in front of its friends will make it shrink. So it retreats to its room to play loud grunge music. And pick its spots. And do other stuff to its teenage self. And disappear. Hopefully. And you can get back to your retreat in Other Land.
OTHER IS
Other is something to do with not quite being part of the norm, part of the mainstream, part of the gang. Other can be enforced upon you or embraced by you. In my case it is/was both. Other surrounded me. It surrounded me because for some reason the alternative – normality – never really offered itself to me. I tried to push ‘other’ away. In the act of trying and failing, I realised that it was a brilliant mask behind which to hide. Eventually I learned to love it and now I find it almost impossible to ascertain which is the mask and which is the me. Either way it is me.
At twenty-eight, that mask became a really vital part of my stay-alive toolkit. I could present a face to the world at the same time as trying to shield myself and my soul from the darkness that I might be retreating to. Sneaky. Handy. Not always that healthy.