by Raz Shaw
My badge had finally arrived and I would try to wear it with pride. Some days that was easier said than done. Some days it wasn’t a badge of honour. Some days it was a stark symbol that ‘other’ didn’t always mean magical. It often just meant ill. Not only that, this badge was a long time coming so maybe it would be a long time leaving as well.
And those were the days when it felt like my hair loss had stripped me of my protection and left me vulnerable and open to the world. Not sure how a bit of body hair and a Jew-fro could save me from global malevolence, but without it I felt much more exposed.
HAIR – A NON-MUSICAL FABLE IN TWO PARTS
PART 1: HAIR OF THE BACK
My hairy back was a thing I wore with pride. A thing I had selflessly donated to many women along the way when conversations dried up. When lost for words, let them explore the forest that is my back. Loads of conversation starters there. And even that had disappeared. My personal back jungle wiped out in one foul chemo swoop. Or, rather, in one three-month swoop.
But it hadn’t taken long for the hairlessness to become part of me. Part of my identity. In no time at all, it had become a shield, a weapon, a comfort blanket, an enemy and a new best friend (new best friends often disappear without a trace after a year or so, especially if you work in the theatre!). It had given me moments of deep sadness alongside moments of wondrous hilarity.
PART 2: IL EST CHAUVE COMME UNE BOULE DE BILLARD (HE IS BALD AS A BILLIARD BALL)
I was going to Paris with a couple of friends for a few days. It had been booked for a while and, even though I was feeling pretty shite, I needed to not cancel it in order to try and convince myself that I could be normal. Do normal things. Have a holiday.
The moment we arrived I knew it was a mistake:
Paris is a walking city.
Paris is a smoking city.
Paris at the weekend is an incredibly busy city.
Not only did I not have the energy for it but it seemed to just amplify the illness. It appeared to be taunting me.
Will this thing ever end? Will I actually escape this thing alive?
As the song of my teens might go:
Every step I take, it’s watching me.
Every breath I take, seems like a year off my life.
Every move I make, makes me feel eighty fucking years old.
I could irrationally blame the French. They are an easy target. I am not averse to easy targets. But one of the reasons I love Paris is I love the French. Don’t get me wrong, I hate them, too. Like New Yorkers, Parisians live up to and play up to their stereotype. Some can be more than a little bit arrogant. Some can be a touch aloof. And some can make you feel really dumb when you attempt French and it’s crap, but I think that is all part of their charm. At least they have character. That’s more than can be said for the ----------- (insert your own irrational xenophobic target here).
Today it all felt wrong and difficult and tiring and upsetting. And I didn’t want to tell my friends because I didn’t want to spoil their mini break. That wouldn’t be fair at all. Plus, telling them might make my feeling shit a self-perpetuating vicious circle from which there might be no escape. So I kept it to myself. And just tried to go with the flow. It cost me a fortune in coffees as every twelve steps I insisted that we needed to stop for yet more overpriced refuelling.
And the effort of keeping up a cheery façade is hard for me at the best of times. At this very moment, it was almost killing me. And this wasn’t the time for a double homicide.
The trouble with the hairless thing is that not only is it a reminder to you that you have a life-threatening illness but it is a reminder to the rest of the world, too, and that marks you out as someone they will either kill with kindness or take two steps to avoid. So the greatest moments are often those moments when people completely forget and treat you as a normal human being.
Paul was in my hotel room having a shower. The room he and his wife were in only had a bath. Actually, I made that last bit up. In truth, I can’t remember why he was in my room having a shower. That’s not really relevant to this story. I mean, it is relevant. Of course it’s relevant. This is a story about a man in a shower. So the location of the shower and the fact that he was actually having a shower are both relevant. The underlying reason why he was in my room having a shower when he had a perfectly decent room to cleanse himself in has slipped my mind. There must be a perfect explanation for it. But I can’t recall it. I apologise for that. It was over twenty years ago so it is perfectly understandable that the reason Paul was in my shower and not using his own bathroom facilities might have slipped my mind. Maybe he was in my shower in order for me to have a story to tell in two decades’ time? I don’t know. I can’t remember. I wasn’t at my brightest at the time, you see. I had cancer, you know. Did I tell you? So. Not quite as on the button as normal. So apologies for my detail deficiencies. I mean, I could just make it all up. That would be easier. But I am running with the facts here. Trying to at least. So...
Paul was in my shower.
I was on my bed.
Paul: Razzy.
Raz: Uhuh.
Paul: Do you have any shampoo with you?
(Long pause)
Raz: Erm, erm, not really…
(Long pause)
Paul: Oh shit, oh shit, oh shit. I forgot. Oh shit, oh shit. Sorry.
(Long pause)
Paul: Shit. Shit. Sorry. Shit.
(Long pause)
Paul: I guess that means you didn’t bring any? Shit.
And that awkward exchange was the highlight of my Paris trip. For one brief second, I was normal. I was not an alien. Not someone you had to hesitate before you spoke to. I was the same as you. For once, ‘other’ can bugger off. At that moment, I was just Razzy, Razzle, Raz, Twatface, whatever your preferred semi-affectionate name might happen to be.
I was just that.
And it was wonderful. It was freedom. And the fact that we laughed so hard about it throughout the tricky Paris trip made it all the more special and life-giving.
And that feeling would stick around long after we got home.
That seems to be what living with cancer is all about.
Holding on to lingering feelings. A series of memories that you can escape to when things get dark. And they will get dark. Darker than you can ever imagine. But you are never alone. The mind is an amazing thing.
So be good to it.
Look after it.
Put a hat on it.
EMBRACING THE SWAGGER
Cancer doesn’t give you many gifts. It is more of a taker than a giver. It is the Fagin of illnesses. Take, take, take, my dears.
But it does give you one thing.
Status.
Status means many things to many people. For me, it’s an internal gauge as to how good or bad, big or small you feel in relation to the next person.
It can be a very fleeting, fluctuating thing. Your status can change in a heartbeat. It is both about how you feel and how others or the world at large make you feel. It is often something that needy people try to paint onto themselves to make them feel better about themselves. That normally involves making others feel worse about themselves.
Status is often intangible and indefinable. Although I’m giving it a damn good go right now. It’s a frequently used drama school cliché that you can’t play the status of a king. The only way an audience can recognise a king on stage – apart from the shitty, bent, silver foil crown on his head – is by how everyone treats him and how everyone reacts when he is present.
Such is the way if you have cancer.
You are kingly. Or queenly. And the crown fits more snugly around your bald head.
People do treat you differently. They don’t have the eloquence they might have previously had around you. They don’t quite know what to say. They look at you with a mixture of pity and fear. They visibly shrink in your presence. They try to smile but the flickering fear in their eyes coupled with the quiver in the cor
ner of their mouth betrays their desperate panic at trying to find le mot juste.
REDUCTIVE
These are often the people who in your former non-cancerous life you found intimidating or looked up to or felt tongue-tied in front of. These are people like your parents’ friends or parents of school friends who, even though you are now a grown person, still make you feel like you are seven years old again. Still manage to reduce you to a quivering dry-mouthed, voiceless, two-foot-tall puerile mess.
Now, it was all change. Now I had cancer, the shoe was well and truly on the other foot. Those people who always seemed like giants to me then seemed small and pale and timid now. They looked sweaty and panicked. Like they walked through the door and were actually confronted with an elephant.
Me.
I am the elephant.
I am an elephant.
I SWAGGER
How did that make me feel? Well, so much better, weirdly. I felt bigger and calmer and more in control. The phrase ‘he has the hide of an elephant’ made perfect sense. I felt ten feet tall. And, yes, I had a sort of swagger. Not sort of. I had a swagger.
Not the full on ‘fuck me’ swagger. Not in front of the parents! Besides, I’ve already talked about that. This swagger was less about the hips and more about a gentle understated confidence.
It was about control.
Despite a desperate lack of control over those aliens eating away at my insides, in this situation I felt more in control than ever. At least more in control than those poor pitying people staring at me across the table. This control puffed me up. It was chemo-free medication. With no side effects. Or, at least, very few. I was released from the nightmare of having to force out a smile all the time. That was everyone else’s job. It was about not having to expend my much needed energy on making an effort to make myself feel comfortable. In fact, just the opposite, I had a job to do. A job that would enhance that regal swagger.
YOUR MISSION
Your mission now, if you wish to accept it, is to set up the circumstances where people around you feel calm, at ease and good about themselves. They have overcome their embarrassment and bashfulness and are now able to look you squarely in the eye and talk turkey. Turkey cancer. Or not. Whichever is appropriate. It is YOUR job to make that happen. They can’t do it alone. Oh no! And when you see their transformation, it is indeed a moment of staggering achievement and splendour. You can breathe much easier because you are no longer staring at the fear in their eyes. Seeing that fear makes you feel quite a bit shit, which in turn makes them feel shittier, which makes you feel even shittier, and so the cancer circle viciously goes on.
By completing your mission, they feel special AND you feel special.
And you are. Special.
You are allowed to feel that way. You are allowed to swagger.
EMBRACE IT
You need to embrace it, remember it and, yes, enjoy it.
Embracing your swagger and being the perfect cancer host can only be positive. Only you are in control of how people behave around you and, therefore, only you can determine, to some degree, the quality of your social surroundings at this time.
Your best friend’s father, a man who used to scare the shit out of you when you were fifteen, might come over to talk to you at a party. You don’t look your best. You are puffed up, blotchy and bald. No, you haven’t been at the red wine again. You have cancer. He looks slightly terrified at the prospect of having to make conversation and shouts rather manically for his wife to come and rescue him/come and say hello to you. You are in control. You have the status. It was never like this thirteen years ago. He used to bark at you when he was driving you and his children to school. Now, YOU have the status. A few choice words, a softening of the voice, a joke to make them laugh, a couple of self-putdowns and one shared experience recollection later, and they have stopped hyperventilating and walk away feeling good about themselves for having the courage to come and talk to you. You walk away with the knowledge that you used your status for good, not evil.
You don’t walk away. You swagger away.
Work that swagger.
This is your moment.
That was my moment.
DERELICTION OF DUTY
It can be confusing having cancer. Really confusing.
It is on your mind all the time.
Of course it is.
Why wouldn’t it be?
It would be.
It is.
But it would really help your sanity and your cluster-fuck mind clutter if you could put cancer to the back of your thoughts for just a few moments.
And now and again you can. You do.
Now and again you stop and realise that in those last brief few moments you have got on with the task in front of you and forgotten about those little bastards causing havoc inside you.
But therein lies the problem. The longer you forget about it, the harder it is to deal with when you remember it. Not only that, but you feel quite strange about forgetting. Guilty even.
As if you’ve neglected your best mate in their time of need and crisis. As if you’ve been a shit friend. You are letting down those people who expect that every waking moment of your life is about ‘battling bravely’. You are letting down those people who believe you should have 100 per cent focus on the job in hand. That job being beating cancer. Any wavering from that is a dereliction of duty. An offence you should be punished for. As if your current punishment isn’t enough!
So there you are feeling shit about forgetting that you’re feeling shit.
Like I say. It’s confusing.
WE ALL NEED AN OJ TRIAL
My attention span isn’t what it was. Come to think of it, it never was what it was. Filling time when you are well is one thing. When you have been diagnosed with a life-threatening illness, it’s a whole different ball game.
It’s an art, in fact.
Having too much time to think is exactly that.
Too much time. To think.
I was lucky when I was ill because I had two things to distract me: the OJ Simpson trial and a gambling addiction.
Annoyingly, because of the time difference between here and the States, prime-time ‘OJ live’ started pretty much exactly the same time as Napoleons Casino opened. (2 p.m. back then. Now casinos are twenty-four hours.) The casino almost always won. That’s how I knew it was an addiction.
The addictive thing about an addiction is that it makes time disappear. It makes twenty-four hours go in a heartbeat. A sweat inducing, adrenaline-filled heartbeat.
Now, I’m not saying that if you get cancer and you don’t have an addiction that you are at a disadvantage. And I’m definitely not saying that if you get cancer and you don’t have an addiction, get an addiction. I wouldn’t dare say that. I would be strung up. By the short and curlies. And seeing as the chemo made every single hair on my body fall out, I didn’t have any short and curlies to be strung up by. I do now. You could string me up now. But that’s not really the point.
The point is that being immersed in something so deeply – even if it is an addiction – does allow your mind breathing space from the evils of cancer. And that breathing space feels like a positive.
The only problem is that when you are lost in the throes of a gambling addiction, you don’t want to breathe. Or have time to breathe, for that matter. And time is money. Time is money won and time is lots of money lost. So the breath from cancer that I so craved was swallowed up by the breathlessness that is gambling. Like I said, it’s complex and contradictory.
Contradiction is impossible to avoid. In fact, the very act of writing this book has made me realise how painful and exhausting fighting those contradictions was. And in some ways still is!
The OJ trial was a fantastic distraction. For someone like me who is endlessly fascinated by the vagaries, nuances and, yes, contradictions of human behaviour, watching an obviously guilty man trying to convince the world of his innocence was mesmerising and completely immersive.
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And when you have stage 4 sclerosing mediastinal non-Hodgkin’s lymphoma, you’re not looking for gentle distraction or mild disruption; you’re looking for full on diversion immersion.
I do love a mantra. And deep in the heart of cancer and a gambling addiction, a mantra that has nothing to do with either and yet rings around my head so prominently that it forces other thoughts into its recess is a jewel among the shit.
‘If the gloves don’t fit, you must acquit.’
‘If the gloves don’t fit, you must acquit.’
‘If the gloves don’t fit, you must acquit.’
Johnnie Cochrane’s trial-winning mantra buried itself in everybody’s psyche. Especially mine. And, more especially, the jury’s.
Now, I wouldn’t go so far as to say I have a mild form of Tourette’s. No. But I do sometimes struggle to keep words and phrases in my head. Sometimes they shoot out of my mouth before I even have a chance to suppress them. That’s my excuse anyway. Plus, as well as being a mantra lover, I am also a certified flogger of dead horses.
So, here’s a bald man with a giant head and a magnificently swollen mouth, walking the streets, chuntering to himself:
‘Gloves don’t fit, must acquit.’
‘Gloves don’t fit, must acquit.’
‘Gloves don’t fit, must acquit.’
I must have scared people shitless. But no matter. It was a magical revitalising medicine all of its own!
The OJ trial was not only an extraordinary piece of theatre, it also became a great excuse to host much needed visitors. I had shunned the idea that I might move back home to my parents’ house when I was diagnosed. I knew the only way I could get through this thing was to create a me environment. A place I could escape to. A place that would be my own sanctuary of serenity. My futon became my hospital bed, my day unit and my dinner table all rolled into one.