by Raz Shaw
The two figures at the end of my bed were standing side by side, very close together. Facing me. They were smiling nervously. They were holding stuff. I didn’t focus on them as I was distracted by the stuff they were holding. The stuff seemed to be a pineapple, a box of Terry’s All Gold and a small rather scabby potted plant.
They were smiling even harder now. And then it clicked. Carla and Katie.
They both sort of started to talk at once. Sort of repeating each other. They were looking more at each other than they were looking at me.
They said they didn’t know whether to come or not. Didn’t know. They said they didn’t know what the right thing to do would be. Right thing. To. Do. Would be. They said they were worried about me being notoriously grumpy. Grumpy. I wouldn’t want to see them. Wouldn’t want to see us. They said they didn’t know. Didn’t know. If. They would. They. Know the right thing to say. Say. So just in case. Case. They brought. A pineapple. Pineapple. A pot plant. Plant. From Katie’s squat. Squat. And an unopened. Unopened. Box of Terry’s All Gold. Gold.
They smiled. They laughed. I laughed. It was brilliant. It was perfect. It made me cry. In a good way. Relief for people who got it. Who got me.
And, thankfully, there were more of these great visitor experiences than there were delusional visitors.
In the summer of 1995, I had a ‘Champagne and Strawberries Wimbledon Finals Party’. It was unlike any other. I’m sure of it. This may have been the only ‘Champagne and Strawberries Wimbledon Finals Party’ that year to take place in a side room of a cancer ward in a cancer hospital in south-west London. I like to think so anyway. I am not one for parties but this one was impromptu, joyful and unique. People arrived. They brought a Fortnum’s hamper with real food that I could almost taste. A picnic was had on my hospital lawn, aka my bed. Tennis was watched, strawberries were eaten, champagne was quaffed (by visitors and a few nurses!) and life seemed surreally beautiful. My non-delusional visitors made it so. A Wimbledon Finals Cancer party. Perfection. Apart from Boris losing, of course.
Same time next year? I hope not.
FUCK GRAPES, GIVE ME TASTE
By the way, where does this idea come from that the thing that will perk us up when we are feeling like shit, looking like shit and have a mouth tasting like metallic shit is grapes? Or any other bland tasteless fruit-type thing that will sit next to our bed, cluttering up our bedside table until they discolour and then rot.
Symbolic, eh! I think that’s why people are scared to throw them away. They don’t want the death and burial of the said fruit to be misconstrued as a sign of our impending doom!
No!
What we want is food to glory in, food that transports us, food that is so rich and deep in flavour that it wins the fight against metallic-mouth-mania and allows us to forget for a brief moment the constant giddy nausea that we have had to learn to live with for so long.
MORE FLAVOUR. NOT LESS.
That’s the only possible chance we have of not being reminded every time we take a mouthful of anything, that the thick killer chemicals that are being pumped into us on a weekly basis have gloried in systematically trying to destroy our taste buds.
Oranges are not the only fruits.
No.
Grilled pesto chicken sandwich with caramelised onions on a toasted ciabatta with triple-cooked chips on the side are the only fruits.
Fuck yeh!
BRAVERY IS
‘Battling cancer bravely’ is an oft-used phrase.
When I was going through it, I neither thought I was brave nor did I feel as if I was in a battle. But that’s not to say I wasn’t. It’s just not what it feels like to be amidst it. In some ways it feels the opposite of those things. You have no choice.
If I put you on a raft in the middle of the Atlantic with a paddle in your hand and the tiniest glimpse of land in the distance, you could choose to do nothing and drift till the elements took you to oblivion or you could choose to paddle. Bit by bit. You don’t know whether you’ll make it but you know that you have to try. And you know that if you are moving closer to your destination, then, despite your ever-increasing exhaustion, you have a good chance of actually reaching terra firma. And that possibility means that you unthinkingly keep going. Sometimes you might even go backwards a bit. Those are the moments where you almost literally sink or swim. But, again, the steel in you rises, unwittingly sometimes, and you continue on.
And you don’t always make it. Not everyone does, sadly. But you find life and experience and soul in the very act of doing it. And that is ‘battling’ and that is ‘bravery’; it’s just normally not conscious and normally not a choice. And over the years since my illness I have seen it time and time again from afar and with people I am close to. And not just with cancer but with all sorts of illnesses and sometimes tragic situations. And my admiration for those people knows no limits.
And so if I were pushed for a definition it would be this:
Bravery is embracing the beauty of the scary situation you find yourself in.
Getting on with it is bravery.
Living with it is bravery.
Dying from it is bravery.
Or, put another way, bravery is finding the courage and the inner strength to try not to blink when the world is telling you that blinking is your only option.
MIDDLE OF THE NIGHT
EMOTIONAL TSUNAMIS
On the whole – in daylight – when I was ill I could tick along pretty well. Relatively speaking, of course. It was at night, though, when my emotions might unexpectedly get the better of me.
I am being strong. I am strong. I am being positive. I am being ‘Why Not Me’. I am being cool with it. I am getting on with the day-to-day. I am focusing on other things. I am doing well with the day-to-day. Really well. I get home. I make a tea. The tea tastes like having a mouth full of zinc. But it’s fine. It’s a reminder. But it’s fine. It is fine. I make some food. I don’t really fancy food but I need food and I am hungry. But I don’t really fancy it. Food. So maybe soup or something? Yes. Soup will be good. Soup will do it. Soup will be fine. And it is. It is fine. It tastes like being force-fed mercury, but it’s fine. It’s a reminder, but it’s fine. It fills a gap. It doesn’t quite hit the spot. Well, when I say ‘doesn’t quite’, what I mean is that it doesn’t at all hit the spot. But it fills the spot. A spot. So that’s fine. Good, almost. I feel a bit light-headed after it but I don’t feel as sick as I often do after food, so it’s better than almost good. It is good. But even the act of eating/drinking half a bowl of soup has tired me out. And that’s a bit weird. I’m an energetic person and a bowl of soup has tired me out. I can’t keep my eyes open in front of the telly. But I’m sure that’s just tiredness from the day; it’s probably nothing to do with the illness. So I can’t class that as a reminder. It’s fine. Fine. And I’d have been dozing off at this point in the evening anyway. Especially as there’s fuck-all on. Except Casualty and ER. And I am up to here with hospitals. So it’s more than OK to turn off the telly and have an early night. Maybe a hot bath and an early night. That sounds nice. Sounds normal. My bones being too tired to lift me off the sofa onto my feet isn’t normal, though. Is it? Well, maybe it is. Maybe I am just getting old. Maybe even if I wasn’t ill, I would be just as completely and utterly exhausted after having got to my feet from a sitting down position. So it’s totally normal. And fine. And that hot bath is beckoning me. A hot bath will do it. Will hit the spot. It takes all the effort I can muster to turn on the taps and monitor it to the right temperature but I fill it. I fill it and it’s fine. A hot bath always hits the spot. Bubbles. There must be bubbles. I try to get in. I stick a foot in. But it is hot. Maybe too hot. A burst of cold will do it. Just a burst. And it works. And I’m in. But it’s a bit cold. It was hot but now it’s cold. It’s making me shiver and making me feel a bit queasy. It needs some hot. It feels like a bit of a challenge this temperature control thingy and the turning on and off of the taps seems harder than it
should be. But the hot goes in. And it’s fine. For a moment it’s really fine. No, it is too hot. It’s too hot. Too hot. And it’s making me feel sweaty and wriggly. It’s not like the hot bath I had in my imagination. It’s not like the relaxing, chill-out, end-of-the-day, ‘close my eyes and transport myself to a posh hotel spa’ kind of bath that I used to have. I can feel the water scratching my skin. The water is deliberately aggravating me. It’s too wet. It doesn’t feel like the hot, snug, warm, velvety towel that it used to feel like. It welcomed me in its arms under false pretences. But I guess that’s OK. It happens. It doesn’t have to be because of the illness. Not every bath has to be beautiful and transporting. I just need to sleep. Just need to rest my eyes, switch off my brain and disappear from the world. And sleep. Tomorrow I will be less tired. Tomorrow I will be less drained. Tomorrow I will be strong enough to face whatever the world throws at me. Although it feels like doing a triathlon, I make it out of the bath, dry off and into the bed. It does feel incredible. Finally being in bed feels fucking incredible. Worth putting up with all that other stuff for. And I am so exhausted that drifting off to sleep without time for a thought or a worry is easy. And immediate. And beautiful. And normal. And normal. And normal. This is one moment of true normality. This little bit now. This first bit of sleep. This bit. The bit where I’m fine. The bit where I don’t have to fight. The bit where I don’t have to second-guess myself. The bit where I don’t have to try and be anything at all. Just normal. And most of the time, that normality, that peace, lasts almost all night. Almost a whole six hours. But this night. Tonight. This night. This night, my tired bones seem to press down hard on my dreams and force me to wake up in a breathless, panicky jolt. And it’s instant. The release. It’s instant. All that emotional pressure of being the one in control of your illness, being stoic about it, putting everybody else at ease, not thinking about the endgame or at least not thinking that you’re thinking about the endgame. All of that stuff that I have unconsciously been holding onto is now pouring out of me in aching excruciatingly painful sobs. Sobs that tear into my soul and feel like my insides being ripped apart bit by bit. Sobs that seem to have no connection or deference to rational thought but that seem to be a giant concoction of blind panic, terror and helplessness. The tears avalanche down my face. My soul demands to be felt sorry for. I fight it at first. Try to get my brain to take over and stop it. But the fighting makes it worse, makes me racked even more, like my bone marrow is bleeding. So I stop fighting it and let it happen. Let it take over me. I throw up my pain but there is nothing left inside me. However, my need gives full force to it and so I retch. I dry-retch until my ribs feel like they have melded together. But the surrendering to it immediately makes it start to dissipate. The surrendering to it makes me able to see the end in sight even as I am doubled over in breathless self-grief. That surrendering allows some rational thought to squeeze its way through my pummelled solar plexus. And as my breathing starts to even-keel itself and I move from the tsunami of sweat that has appeared in the bed, I start to feel both calm and even more exhausted. But calm. And the beauty of what has just happened hits me. I AM normal. I am just ill. For now. And it would be completely and utterly abnormal to sail through this illness and the cunt that is chemotherapy without any physical or emotional lows. Lows that I fight on a daily basis and that my strength and spirit and soul allow me to overcome. In the middle of the night, my body doesn’t have the strength or desire to fight any more and it comes out, and it comes out, and it comes out, and however painful that moment is, however upsetting it feels, those are the moments that enable me to make it to the other side of this illness. They are real moments. They are me moments. My moments. They are just as important as the wry, funny moments. If not, more so. So perversely, when they randomly appear, in the midst of the gut-wrenching agony I will learn to enjoy the knowledge that some of the pressure has been taken off. In a strange way I will enjoy the agony because at least I know that I can wake up, the morning after the middle of the night before, to a bit of calm. And I close my eyes and I do sleep till morning and I do feel exhausted from the trauma but I am definitely calm. And it’s time for a hot bath. And I need to strip those sheets. The tsunami’s over. For now. And the hot bath feels great. And the day begins. And it could well be a good day.
THE EDGE OF HEAVEN
‘Music stops the clock. For three hours, time ceases. It’s the one place where for a brief moment you are a master of space and time for real.’
Bruce Springsteen, 2013
Music was my chemo antidote.
It became not only my escape from the darkness but also my escape from the world. Or, to be precise, my escape from the world of reality into the ether of otherness.
Stopping the clock when you have cancer is the order of the day.
EVERYONE NEEDS A BRUCE SPRINGSTEEN WHEN THEY’RE ILL
Bruce Springsteen helped save my life. I have never told him that. I am telling him now. His music opened up the channels of hope to me. It forced me off the floor when I had fallen and couldn’t or wouldn’t get up. It spoke to me more than any single thing before or since. It shook me and cuddled me and embraced me and told me again and again and again that there was a point to all this. There is a point to it all. Springsteen’s music is all about feeling alive and being alive. About finding hope amidst the rubble of reality. Even the most cynical can believe in that hope.
‘IS THERE ANYBODY ALIVE OUT THERE TONIGHT?’
Bruce Springsteen in concert is a whole different level of perspicacity and profundity.
It is a spiritual experience.
It is four hours at the gas station of life, replenishing your faith.
The first time I saw him live was thirty-two years ago, front row at the old Wembley Stadium. I was eighteen. I had been a fan of his for about three years. My friend Tort made me a Bruce mix tape (a mix tape that was an actual tape!) when I was fifteen, and the moment I played it, I knew. I knew that this was a game changer. I sort of knew that this was a life changer, too. I didn’t quite know yet that this might even be a life saver! Here was a guy who seemed to get me. Here was a guy who seemed to understand my complexities and give full expression to the millions of contradictions going on inside me. Here was a guy who seemed to be able to take my inner turmoil and miraculously turn it into hope and perspective.
I queued for twelve hours to be front row at Wembley, and I looked down on all those people who had just discovered Bruce Springsteen from the Born in the USA album. I knew better. I had unearthed my soul to ‘Spirit in the Night’, shed my boyhood to ‘The Promised Land’ and planned my escape and world domination to ‘Thunder Road’. At eighteen, I made it to the front row.
And the front row felt like a belonging. A small select club.
ߦ The front row to my soul.
ߦ The front row to a religious experience far greater than any eighteen-year-old North London non-believing Jew could ever imagine.
ߦ The front row to a place inside me that, up till then, I was sure didn’t exist.
This was pre-YouTube accessibility. Sure, I’d seen a couple of grainy VHS videos. I thought I knew what to expect. I didn’t.
It was 4 July 1985.
Something strange happens at an outdoor concert. When that artist walks out on stage he normally does so when it’s still light so the thousands of stage lights don’t really kick in till later on that night. What you get is this beautiful sepia-like light that never fails to make me want to cry. I don’t know why. I am not a nostalgic person but there’s something about that light and the wind and the fading sun and the first twangs of music that breaks my stony heart. And I was addicted. I know what addiction feels like and that was it! And it’s no use banging on about the Bruce live thing again. Thousands of people have said it will change your life. And it will. It’s a direct line to your mind, body and soul. I make no apology for the cliché. For it is as close to a religious experience as I will ever get.
After wha
t seemed like a lifetime of waiting, Bruce Springsteen walked onto the stage alone. One man with a guitar. One ordinary man with a headband. One man who will, in ten years’ time, save my life.
He looked up to the skies. They were blue. A blue sky day to lose my Brucinity. Perfect. He looked out to the 80,000 people in front of him. I knew he was looking at only me. He took a performer’s moment to take in his world. He didn’t say a word and just launched into ‘Independence Day’. A beautifully wrought song about the strained relationship between father and son.
And after the fourth line I knew. I knew I wasn’t alone. I knew that however scared I was of what my future might bring, I had an equaliser.
And that’s the point. Everybody needs an equaliser. Some kind of perspective mechanism. Some kind of alkali to all the acid. Bruce live is better than any yogic retreat, better than chanting (though there’s a lot of that), better than most sex. He describes it best. It ‘rejuvenates’. It’s an IV line straight to the soul. More than that. For me, it’s a deeply cleansing experience. Washes away the dirt that has collected inside me for days, weeks, years and starts again afresh.
Sadly, the dirt starts to re-accumulate the moment the concert has ended. But that’s OK. As any hoarder will tell you, there’s something deeply liberating about a life laundry de-clutter.
And going through the ravages of chemo demands constant rejuvenation.
Most days, I wear my game face easily and with a certain amount of pride. I can do this. I can. Get through this. I can. And I do have a surprising and probably innate ability to not let it worry me. Or not let the uncertainty of tomorrow worry me. More than that, I can laugh my way through a lot of it. And about 43 per cent of that laughter is real. I have realised that I am neither a glass half-full kind of guy nor a glass half-empty kind of guy. I am just a guy with a glass kind of guy. Most days I can find enough breath to do much more than just exist. Most days. But chemo is a destroyer like no other. It holds no truck with cocky twenty-eight-year-olds who think they have found the key to indestructibility! And just when you least expect it, it sails on in and lands itself right at the core of your vulnerability and leaves you feeling powerless and weather-beaten and rudderless.