by Raz Shaw
Yesterday was chemo day. And Debbie comes to visit and she brings stuff. I always like it when close friends come to visit because the stuff they bring is normally good stuff. Debbie wrote the play that I am directing in Edinburgh. She is also in it. She is also a uniquely caring, empathetic and understanding woman as well as being a lover of the finely crafted joke. As you may have gathered by now, so am I. She is the ideal visitor for this moment. We are on the same Edinburgh team so it feels like she understands. She is a close friend who has been there from the beginning so I never feel the need or the pressure to explain anything. More importantly, in the moments where the harsh reality of the now starts to rear its ugly head, she has a unique ability to find the right bad gag for the right bad situation. Which never fails to cheer me up. Can I make it up to Edinburgh? Yes you Can-Sir.
I spend two hard-core days in hospital with every possible drug being pumped inside me. The doctors are trying to arrest my decline at the same time as attempting to make a decision about the best course of treatment from now on.
THROUGH THE CANCER GLASS
At times like this, despite putting all my faith and trust in the hands of the Marsden medical team, I would get lost in the vortex of the cancer looking-glass. The huge world above me was spinning. I could no longer distinguish people’s voices. It was just constant white-coat medical-related chatter. However, every decision was being relayed to me and a plan for my temporary release was being drawn up. And, despite feeling like a tiny gravity-free molecular speck in a gigantic world, I was invigorated, liberated and empowered.
Three days ago was chemo day. In the blink of a crusty eye I was on a plane to Edinburgh. I was exhausted and exhilarated. The exhilaration wasn’t really excitement for what was to come, it was a bit more complex than that. I think it was to do with the power of knowing I had wrested back a bit of control. I had stared into the abyss that life was offering me, stood up to it and refused to budge. I was not laughing in its face because there wasn’t a great deal of laughter going on but I sure as hell was not backing down. In the cancer ‘who blinks first’ competition, I was not blinking. And not blinking. And not blinking. And not blinking. My eyes were watering to fuck. The rest of my face was contorted with the extreme effort of it all but there was no way on God’s earth that I was going to blink. If I blinked, I may as well have died. If I blinked , it meant I’d surrendered and that was just not an option.
To paraphrase the great Boss himself (Bruce Springsteen. Not God. Though they may be one and the same.), never retreat and definitely never surrender.
Five days ago was chemo day. I was sitting alone at some trendy café just off the Royal Mile. In Edinburgh. My table was swimming with flyers for a thousand shows. People in outlandish costumes were shoving yet more flyers at me and shouting things.
‘Not altogether shit,’ says the Scotsman. ‘Two-for-One this afternoon only. And tomorrow maybe, if you want!’
What normally would just annoy the total fuck out of me, now became this strange aching thing of beauty. A symbol of all I was about to be forced to give up. And I breathed it in. Tried to make it last. But it didn’t. Last. It wouldn’t. It couldn’t. And nostalgic sadness enveloped me and started to strangle me. Tomorrow disappeared. I stopped breathing. The world went white noise. I sat there. And I sat there. And I sat there. Paralysed. In a singular moment of ice-cold time. However hard I tried, however hard I scrunched my face up and squeezed my brain, I just couldn’t breathe. I couldn’t see into the future. I tried. I tried so hard but the future was a blank to me. And I couldn’t breathe. I could cry but I couldn’t breathe. And I cried. And cried. And cried.
And it wasn’t to do with death. It was to do with the unknown. It was to do with the realisation that from this day forward I had nothing ahead of me. Ahead of me there was just a void. A simple hissing void. The world around me seemed minuscule and every second felt like a lifetime. And I sat there forever. And I didn’t move. Didn’t want to move. Didn’t even think I knew how to. But eventually I had to. Move. Eventually. I had a show to direct! And that’s the point. I had to try to find a way to get beyond the paralysis and keep on moving.
And I did. And you have to.
You put one foot in front of another and in small, slightly unsteady footsteps, you move to the next phase in your life. And however treacherous those footsteps might be, you do have to keep going. Got no choice. And that’s what bravery is. Keeping on going, however many obstacles life tries to put in your way. However paralysing life might try to make you feel. And you get five stars in the Scotsman for that.
SEX AND CANCER, PART TWO – THE CANCER SWAGGER
Like in all these cancer tales, contradictions abound. Sex may have been my lingua franca but cancer seemed to have changed all the rules that I was previously so well versed in.
One of the side effects of chemotherapy isn’t horniness. Not one of the most common ones, anyway.
Coupled with that, you aren’t necessarily looking your best:
ߦ You (me) may have no hair.
ߦ You (me) may be puffed up to the nines by the steroids.
ߦ You (me) may have strawberry bloodshot eyes from drugs and lack of sleep.
ߦ You (me) may have 350 mouth ulcers.
The steroids and the mouth ulcers and the no hair and the no sleep are bad enough, but I’ve saved the worst side effect till last:
The No Arse.
I kid you not.
As if life couldn’t get any worse, my oldest and most brutally honest friend Tort pointed out that my most prized asset, the one thing I had in common with The Boss, the one part of my anatomy that is fail fucking safe, had gone. Gone. Stolen from me. By a chemical arse thief. By a drug-pushing bottom burglar. Wait. I think a bottom burglar is something different. Anyway. One careful owner. Not much mileage on the clock etc. That’s the true tragedy here.
And the most frustrating thing of all?
I didn’t need to know! I could have spent my whole time oblivious to it.
I can’t see my arse. It’s behind me. Was behind me. Now it’s been replaced by a flat, cheekless, plumpless mass of nothingness.
AND I DIDNT NEED TO FUCKING KNOW.
So all in all, not particularly looking or feeling my best, I might just have to stick to fantasy.
That thought didn’t make me depressed, it just made me a bit sad, because I knew that skin on skin right now would be revitalising. And that’s what I needed more than anything. Rejuvenation.
And somehow, despite feeling desperately unsexy, I managed to find it. There are many reasons why you might want sex when you have cancer:
ߦ To get out of your thinking head and immerse yourself in the world of the physical. In other words, doing rather than being and discovering a brief physical escape axis.
ߦ To trick yourself into thinking that you just might be normal. In that moment. You might be able to do the things and, more poignantly, want to do the things you could do before you were ill.
ߦ To find a release – a chemical release – that might be impossible to find any other way. Without being over-graphic about it, that release surely must be good for you. When I say you, I mean me. And even if, for a brief moment (what’s new!), that release is beauty and normality and freedom.
I didn’t feel sexy but I certainly did have a bit of that cancer swagger. I think the thing that makes the cancer swagger attractive is that it is completely without pretension and effort. It just IS. There really was nothing more to lose. I had lost almost everything else up to that point.
What did I really care if someone didn’t find me attractive?
Having said I didn’t care, that can’t be entirely true as I did often make more than a little bit of an effort to make myself look slightly less alien-like. The fifteen steroids I was taking a day would make my already large head puff up to an almost comical degree. I got to know that if I stopped taking them, it would be about four days before my head went back to ‘normal’. Those steroids
were a big part of preventing my immune system from collapsing. But if I had a ‘date’ on a Saturday, I would stop taking the steroids on the Monday before.
Why would I put myself at risk for a flirtation or a brief meaningless sexual interlude? Well, why wouldn’t I? Everybody was looking after my body. Nobody was attending to my soul. I was just paying it some much needed attention with little mutual acts of love. Spurts of love. Sexual love maybe. But love all the same. And that was my language. And it didn’t require words. Before, during or after.
The language of sex is so expressive that the spoken word is often superfluous. No explaining, no theorising, no investigating. Just sex.
Don’t get me wrong: I am the number one proponent of the highly vivid and often graphic use of words during sex. Nothing better. But sometimes silence is bewitching. The sound of breath, bed springs and gentle bodily collisions can be achingly wonderful. And in the cancer context, where the right words are not always easy to find, that shared passionate sexual silence can be heart-stopping. Sometimes almost is!
It is somebody’s way of showing me that they care, that they are with me, that I am not alone. And because they think you might break, they are often careful to be as tender and gentle as they possibly can be. And that’s alluring and moving, too. Having said that, sometimes you want it hard. Real hard. Hard enough to allow you to forget. To forget and be transported to a pre-cancer, less fragile time. And that hardness is beauty, too. Real escape passionate rough beauty. Normally, though, if you want it hard, you have to initiate it. You have to let them know that you’ll be OK. That you won’t break.
When I use the word ‘they’ in this context, it sounds pejorative, casual and disrespectful.
It’s not.
I use the word ‘they’ because:
ߦ ‘They’ helped me save myself.
ߦ ‘They’ helped my heart sing in times when it was caked in shit.
ߦ ‘They’ showed me love in a language I understood more than any other.
ߦ ‘They’ showed me passion, compassion and tenderness when I needed it but couldn’t ask for it.
ߦ ‘They’ helped take away the fear, the pain, the loneliness.
ߦ ‘They’ made me feel sexy again.
ߦ ‘They’ made me feel normal again.
ߦ ‘They’ know who they are.
I’m sure some of ‘they’ were also morbidly fascinated to fuck someone who might be on the brink of death.
I would be.
And being on the brink of death leads to a multitude of discoveries. Sex turned from being a physical act that I was pretty au fait and comfortable with to a way of communicating things in my heart that I found difficult to express overtly in any other form. And the nuances of that expression became an addiction in itself. This touch means this. This movement means that. It became passionate, heartfelt, tender and irresistible. And I discovered that it doesn’t correlate that tenderness means love and the opposite of tenderness means sex. Oh no! It’s much more complex than that. And if it all sounds so calculating and unromantic, back off. I can do ‘instinct’. I can do ‘in the moment’. I’m in the theatre, for fuck’s sake!
Physical expressions of love were one of the many revelations during my cancer journey that shaped my future. One of the many things I am grateful for. One of the many reasons that I wouldn’t change the past.
1995 to 1996.
An unexpected cancer journey laced with an abundance of sex.
Sex with cancer.
Cancer with sex.
ORAL ARMAGEDDON
Imagine one mouth ulcer.
Imagine two.
Four.
Eight.
Sixteen.
Thirty-two.
Shall I go on?
Yes, I shall.
Imagine 64 mouth ulcers.
Imagine 128 ulcers of the mouth (mouth ulcers).
Imagine 256 oral ulcers (mouth ulcers).
Imagine 300 mucosal ulcers (mouth ulcers).
Imagine 347 aphthous ulcers (mouth ulcers).
Imagine 350 canker sores (mouth ulcers).
Imagine 350 mouth ulcers (mouth ulcers).
That’s Three Hundred and Fifty.
Three hundred mouth ulcers. And fifty more.
At one time. In one mouth. At one time. In one mouth.
If you are wincing as you are imagining this, imagine how I felt. And imagine this. This isn’t literary embellishment. It’s true. At the heart of my chemo, the side effects were having a ball, going to town, having a field day. I woke up one day with 350 mouth ulcers. Count them.
3
5
0.
And I did.
Count them.
Well, that’s actually a lie. The two consultants, four doctors and two nurses that were crowded round my bed studying me like I was the headline exhibit in the Circus of Horrors, counted them.
PAINstakingly. Counted them.
They had never seen the like. Apparently.
I am lying in bed in the Marsden. Decisions are being made about me. I am being referred to, but not spoken to. I can actually speak. I can. It hurts like fuck when I do, but I definitely can. I’d like to. Speak. Have a say. In all this. Think they know that? They must know that? Do they know that? Apparently this is unique. Apparently. A unique side effect. Woo-hoo! I have a constant flow of people coming to look and take endless pics. Now and then someone notices that there is a me beyond the insides of my mouth. They smile sweetly with that look of pity a vet must give a dog just before they put him down. I am twenty-eight. I am not eight. I feel eight. Most of the time I feel eight. I am an eight-year-old in that Munch painting. My life right now is one long inner silent scream. Nobody can see that. Luckily. Cos it’s not pretty!
They didn’t just count them; they took pictures of them ’n’ all. From every angle. And they did lots of prodding and lots of poking. Standard doctors and nurses procedure. Prodding and poking! At certain points I think they forgot I was a living, breathing thing. To them, I was just a head (a huge head at that). More specifically, I was just a mouth. I believe they used the five-line counting method thingy so they didn’t lose track. Tally marks, I think they’re called. It’s a quick way of keeping track of numbers in groups of five. One vertical is made for each of the first four numbers. The fifth number is represented by a diagonal line across the previous four. Like so:
Then you count the bundles. There were millions of bundles. This many bundles:
Apparently, the rare extremity of this particular mouth ulcer side effect was due to the specific cocktail of drugs that they were giving me. It appeared that one drug in particular was the main cause of this oral invasion – Vincristine. A name like an eighties Italian porn star with the destruction capabilities of a nuclear bomb. A drug used predominantly for blood cancers such as lymphoma or leukaemia. It’s the only drug I took any real notice of. I realised very quickly that it wasn’t a drug that liked a fair fight. It was a clear liquid, and that in itself can lull you into a false sense of security. It would sooner stab me in the back than face me head-on. So I did some research into Mr V. Cristine. Encyclopaedia Britannica rocks!
VINCRISTINE
Cancers form when some cells within the body multiply uncontrollably and abnormally. These cells spread, destroying nearby tissues. Vincristine belongs to the group of drugs called vinca alkaloids. These are often called plant alkaloids because the first of these drugs was developed from the periwinkle plant (vinca). Vincristine works by preventing the cancer cells from entering the dividing stage (mitosis) of their life cycle. This stops the cells from multiplying. Unfortunately, Vincristine is not able to discriminate between good cells and cancer cells, so it can affect many parts of your body besides the cancer. Since non-cancer cells are better than the cancer cells at repairing the damage caused by Vincristine, the cancer cells die and your normal cells repair the damage so they can resume their normal function. The side effects you experience from Vincristine are
a result of this damage to your healthy cells before they have a chance to repair themselves.
And here’s the infamous contradiction.
You want to be given the most powerful drugs possible to fight this evil disease. Of course you do. But the more powerful they are then probably the more insidious the side effects are.
So it’s lose lose, even when you win.
While we are on the subject, some of the syringes that the nurses used for the chemo were absolutely humungous. And they often contained flamboyantly colourful liquids. I dreaded the moment I saw the nurse heading my way with comedy-sized syringes at the ready. I was trapped in a grotesque cartoon. The nurse sat beside me. Two huge syringes in her hand. One red, one blue.
‘Shall we do it?’ she would say.
I wanted so much to hate her. I wanted so much to turn her into Nurse Ratched from One Flew Over the Cuckoo’s Nest but she was so sweet and kind and caring that, try as I might, I just couldn’t. Dammit! How can someone so lovely and so caring be so comfortable carrying such enormous instruments of evil? And she talked so gently and softly as she administered the poison.
ONE NURSE CHATTING IN THE DARKNESS
This particular nurse liked to chat to me about life, love and the world. Maybe she thought, as I was younger than her average patient and just a little bit cheeky, that it would be fun to engage in general small talk. Or maybe this was her usual distraction method. Either way, she chatted non-stop.
‘Ooo, chat, chat, chat, the world, the world, bits of gossip, chat, chat, chat, the odd flirt, ooo, chat chat, chat.’