by Raz Shaw
And it was at these moments that Bruce would appear. I wasn’t aware of it till years later but he was my ever-present and truest companion on this ride.
ߦ He would show me the right song for the right moment at the right time.
ߦ He would remind me that my immune system might be fucked but my soul was impenetrable.
ߦ He would remind me that fear is impermanent.
ߦ He would remind me that grace in adversity is still grace.
ߦ He would remind me that searching for the joy in the now is almost as rewarding as feeling the joy of the now.
ߦ He would remind me that without looking deeper into yourself and recognising the darkness that might be there, you can’t truly celebrate or even truly recognise the fullness of your humanity.
That’s what his songs do and his performances do. They jump from the frothy to the introspective, from the epic to the minute, from the raw to the cheese. To see Bruce live is to celebrate. And to worship. And to think. And to get a bit spiritual. And to cry. And all in all, to have an exhausting but rejuvenating good time. In the nine months that I had cancer I saw Bruce live every single day. I put my fake Discman on (I always had to have the cheap imitation model; it still bothers me), pressed play, closed my eyes and I was there.
And there were thousands of people around me but this one was just for me. And darkness vanished and elation appeared. And hope quickly followed. And life possibilities seemed infinite. And losing wasn’t an option. And being alive was an active emotion. A tangible heartbeat thing. And any notion of disappearing was banished. And physical pain was misplaced for just one brief moment. And the tiny flecks of exhilaration at the end of the tunnel grew into a celebration of light, life and being alive. And I was immersed in my very own rock and roll baptism with Bruce as my preacher and my saviour.
Music was my purest means of escape when questions flew around my head that I didn’t know how to answer. Music saved me every time I stepped just a little bit too close to the emotional vortex. It stopped me from thinking and allowed me to just live. For that instant at least. To stay alive.
I could write chapter and verse and personal emotional meaning about most Bruce songs, but I will focus on just one as it’s one that gives me life every time I hear it.
‘THE PROMISED LAND’ BY BRUCE SPRINGSTEEN
‘The Promised Land’ is an obvious stay-alive song. Obvious but it hits the spot. Stay-alive songs are not about forgetting. They aren’t hands over your ears blah blah blah songs. They are the opposite. They are let’s face it songs. Let’s do it songs. ‘The Promised Land’ has the most front-foot kick-ass opening of any song past or present. When the harmonica kicks into the drums, your heart explodes, your whole cavity opens up, and at that moment even the most cynical believes.
When I was ill, every time I heard that intro blast into my head, the world seemed to open up into a multitude of possibilities and opportunities. In those eight seconds I knew that it wasn’t about living or dying, it was about much more than that. It was about filling and fulfilling every last moment with an unquenchable spirit.
And I can honestly say that twenty-odd years on from that journey, I still get so much strength from those inspirational people who grabbed every single moment and were replete with such grace before death took them. From their strength I must take strength and spirit and soul. From their strength I must learn not to be afraid to smile and to laugh. From their strength I must look beyond the fear of the unknown future and at least try to live absolutely in the moment.
This moment.
This Promised Land moment.
When I was ill, the first step to recognising that I needed to try to rise above feeling shit, both physically and emotionally, was first to accept that a big part of me did actually feel like total shit.
Even in the days where I was curled in my bed in the foetal position wanting it all to end, there was a tiny ‘fuck you’ worm inside me that I knew would eventually take over, force me out of my slumber and out into the world to roar again. Or try to roar. Roaring is good. It feels good. And anybody can do it. Even a mouse can roar!
There were so many times when cancer turned me into an eight-year-old. So many times when the world was giant above me. Kitchen tops were out of reach. Metaphorically speaking, you understand. At five foot eight and a half inches, I am very tall. Very tall. The world felt out of reach. But I would listen to ‘The Promised Land’ and I would find the strength to rise, take a moment in my hands and feel like me again. Even if only for a second.
There are countless more stay alive Bruce songs, but that’s for another chapter in another book. But you get the picture. And my stay-alive songs weren’t restricted to Bruce. Hell no. Along the way we had a bit of Oasis, a bit of a Blur and a whole lot of Wham!. Nineteen eighties pop cheese was at the heart of my stay-alive song collection and it was better than any anti-sickness drug or energised pick-me-ups.
I was on the Tube, going to the Royal Marsden for my weekly dose of chemo. I felt light-headed and sick. Not sick enough to actually be sick but sick enough to feel nausea 24/7. Which is much worse. The tube is definitely NOT a good place to be when you are in the midst of ball-breaking chemo. I should have taken a taxi. I often did. But when you have cancer and a gambling addiction, £13 in a cab is blackjack money, and however close to death you might be, don’t fuck with blackjack money. Don’t EVER fuck with blackjack money.
I had to be at the Marsden for 10 a.m. to have blood tests to see if my white cell count was high enough to cope with the chemo. If it was too low, it meant that my immune system was too weak to endure the chemo, so the treatment would be cancelled. I was three months in. Side effects were kicking in now. Mouth ulcers, metal mouth, hair loss. Lots of stuff.
Perversely, on chemo day I loved waking up in a ball of sweat feeling like the world or, rather, me was about to end. Why? Because I knew it probably meant that my immune system was fucked and that today would end up being a no chemo day. And that made me happy. It made me relieved. It also made me terrified. It was, as you see, confusing.
So I was on the Tube on the way to the Marsden:
I am dreading chemo today. Totally dreading it. I am light-headed. I feel sick and I just want the entire world to fuck right off. I have this weird thing. I have been doing this chemo thing for a few months now and I have come to know my body pretty well. Apart from the light-headedness and the nausea – which is pretty much constant – I know when my white cell count is down and my immune system low because I get this strange click in the back of my throat. Like something is lodged there that I can’t displace. Today is a click day. Today is not a day to be on a crowded Tube. With my immune system this low, proximity is my foe. I am on the Tube, feeling that throat click, knowing I have no immune system, surrounded by commuters. Their every cough, growl or even heavy breath seems to shortcut straight into my soul. I am a juddering, twisting ball of neurosis. Every tiny noise forces me to twist sharply. Away from the coughing bomber. As if to taunt me, to goad me, to pick on me, someone from the direction I have turned to snivels at me at three hundred decibels. It goes on and on and on and I twist and twist and twist. Every time my twist is more defined. More vicious. More ferociously angry. I am the mad guy on the Tube that nobody wants to look at but everybody wants to cough at. I need a badge: ‘Cancer on Board. Nobody Breathe!’
It was at times like this that I was desperate for a distraction that would get me away from this human Tube of infection. A distraction that would circumvent me from this ticking bottomless pit of pain, illness and neurosis.
Wham! is just the remedy.
I hit play on my fake Discman, closed my eyes and got lost in a world of Club Tropicana pop-tastic otherness. And it worked. From King’s Cross to South Kensington I was floating on a pop cloud of delirium. Not a cough, a growl or some big man’s armpits could get me down.
I am at the ‘edge of heaven’ and I do want my ‘soul to be forgiven’ and I do want to get the f
uck out of this Tube.
Next stop, South Kensington.
Wham! There is a God.
ESCAPE TO FREEDOM
I am pretty much an insomniac. Never really had an extended period of full, deep and satisfying sleeping. Ever.
There are only two places that I have always slept well:
Hotel rooms and hospital beds.
Hotel rooms have always been the epitome of other. Of fantasy. Of escape. Hospital beds, not so much. They have always come hand in hand with Mogadon or Temazapam. When the nurse came round at 8 p.m. with the pill trolley, I bit the arm that snoozed me. I don’t take sleeping pills in normal life but in hospital life I do. And I did. I so did. Yes. Please. Prescription sleeping pills not only make you sleep big but they make you dream big. And I am talking ‘Lucy in the Sky with Diamonds’ big. A legal eight-hour acid trip big.
The only time I have consistently slept well in my own bed was in cancer year. I was drugged up to my eyeballs most of the time, that’s why.
STEALTH BOMBING
Having said that, during the second half of radiotherapy, sleep didn’t come easily at all. Radiotherapy is much more heinous than chemo. It is the stealth bomber of cancer treatment. Ten minutes of precision zapping, five days a week for three months. That is all. But it takes you on a round trip to hell along the way. Ten minutes of zap. That’s all.
You don’t feel anything at first. It’s fine. The first week and a half are a breeze. But slowly, slowly, it burns into your chest. Physically and metaphorically. Deeper and deeper.
Not only is it burning deep into my chest but it is devouring my energy supply until I have nothing left. All my lifeblood, gone. Sleep, gone.
And, like I say, sleep was an inestimable commodity. To be treasured like a fragile glass ornament. It wasn’t always restful. It was whatever it happened to be that particular night. It was sometimes fitful, sometimes explosive, sometimes upsetting. But it was always sleep and it was always escape. And escape is respite. And respite is priceless.
SPLIT SECOND
Plus, there was always a moment. Always. Without exception. Every time I woke up from a deep sleep. For that split second, I was cancer-free. I was ‘normal’. The aliens hadn’t landed. No insurgency had taken place. A split second of euphoria fog before the ugly guise of reality descended. Always a split second. And that split second was without doubt the most heartbreakingly magical moment of my cancer life. Every. Single. Time.
This is real. This IS real. This is not a dream. I am clear. I am free. I am cancer-free. I am free of fucking cancer. I am. I am. I do not have stage 4 sclerosing mediastinal non-Hodgkin’s lymphoma. I am just me. I have life. I have energy. I am ‘me me’. I am ready to get up and go and be the me I remember me to be. In this split second, I am me. Less than a blink of my eye. My split second. All mine. I am cancer free me. YES!
Sadly, that split second of sheer cancer-free euphoria is followed by the biggest crash comedown any addict has ever experienced. Straight in the solar plexus. If I did have any ‘why me?’ moments, they always came in these spare moments. And this was no split second. This was ten long seconds.
ߦ Ten seconds of self-pity.
ߦ Ten seconds of despair.
ߦ Ten seconds of ‘no no no, I can’t do this, I can’t, I can’t do this, I just can’t’.
And then. Peace. My conscious being would take over and check how I was feeling that day.
Do I feel sick at all?
Does my mouth still taste of rusted spoon?
Do I have that weird click in the back of my throat that indicates my cell count is dangerously low?
Am I hungry at all?
Am I ready to face the day?
And once the conscious me took over, I was fine. And in a strange way, that early morning ten-second emotional rollercoaster was my stay alive fuel. Because it felt very real and yet it didn’t hang around. It was strong and hard and passionate but it didn’t last long enough to wear me out. Just the opposite; it was the gas that allowed me to hit the day running. I wasn’t breezing through this thing emotion-free. I had my meltdowns like everybody else but I was blessed with mini bite-sized concentrated ones that spurted inside me and didn’t try to overpower my every waking moment.
MY NAME’S RAZ SHAW AND I’M
A SMELLAHOLIC
Another useful escape mechanism was smell. If such a person as a smellaholic exists, I definitely am one. I am transported by the good smells and repulsed by the bad ones.
In 1995, lying in a hospital bed, no smell is left unturned! Neither antiseptic. Nor stale sick. Nor mince, potatoes and cabbage. Nor old ladies. Nor death. Nor stale biscuits.
In search of odour neutral, I devour every perfume sample from every magazine in every waiting room of every ward in the entire hospital. I have a giant stash. A dealer-size stash. And at the appropriate moment, I inhale. And I am away, crossing continents, playing backgammon on the beach while drinking bottles of ice-cold Coke, hiking through Andalusian lemon groves, devouring overpriced strawberries while watching a Brit get beaten on an outside court at Wimbledon. For a second, a minute and a moment, the smell takes me out of these sterile confines. The smell takes me to a place called Elsewhere.
PARADISE IS A PLACE CALLED ELSEWHERE
Elsewhere is a magical place. A special place. Why? Because it’s not Here.
It’s Elsewhere.
Right now, Here is somewhere you definitely do not want to be. Here is somewhere replete with the unwanted. Here is too real, too much of a reminder, too Here.
I do everything I can possibly do to find Elsewhere. To reach Elsewhere. With my perfume sachet toolkit, I am doing quite well to get away from Here. I am always almost Elsewhere when the overboiled potato fumes of reality plunge me back to the Here. This is prison hell and I am being filthily punished.
HER MAJESTY’S CANCER PRISON
The Royal Marsden Hospital probably has nicer carpets than most prisons. They are a lovely shade of pink. I’m sure the food is better. Sometimes. And as far as I know, my visitors aren’t always body-searched before they come in. I told my mum she didn’t need to go to such invasive lengths to hide a bunch of grapes and a Dick Francis novel. And it isn’t the Marsden’s fault. It’s an amazing place, amazing facilities, amazing staff, amazing volunteers. Amazing, but it’s still a prison. And in prison you are allowed an hour’s exercise a day.
In hospital, it’s really easy to forget to walk. When your cell count is dangerously low and every tiny movement drains you, staying in bed seems like the only imaginable option. But staying in bed only serves to remind you of where you are. In bed. In a hospital. With cancer. Your will has a daily wrestle with your body and you never know who’s going to come out on top. In that particular bout, my resolve is often much stronger and so some walking is done. I say ‘some’ because I never know how far I am going to get until I don’t get there.
I shoe up and ready myself for some real-world walking. Some days I only get as far as the pink carpet in the entrance hall. I have to make the pink carpet. That is always my goal. And most of the time, once I’ve reached the pink carpet it seems sensible to cross the threshold and do the outdoors. Now this isn’t exactly encouraged. My cell count is dangerously low and my immune system is shot to fuck. Venturing out into the non-sanitised world that we call life, among real people clearly ridden with God knows what, is a risk of fairly major proportions. But I take the outdoor plunge regardless.
It feels heaven to transgress.
The lifeblood that is pumped into me by this short exterior venture far outweighs any risk that might be involved. I love the utter strangeness of it. I love people looking at me as I wheel my IV drip stand down Fulham Road. With me attached to it, of course. I haven’t brought it along to keep me company. My brain isn’t that far gone yet.
Of course, if you take that walk too far, you find yourself in hell. And I am not just talking about Chelsea. The body starts to rebel and makes you feel ninety-four agai
n. Most days I know how far to go without going too far but, on the odd occasion that I push it, I pay for it later. My body goes into shock and I am confined to the very bed that I was desperately trying to escape from.
At night-time, I still need to keep this home fantasy going and I make sure I have a tea, a biscuit and something to read at about ten before I devour the pink pills that make me sleep. I am a naked sleeper. Wearing stuff in bed is just weird. Clothes in bed? Clothes are not meant for bed. I have a no-clothes rule when I sleep. Of course, on a hospital ward that becomes a bit tricky. Well, not tricky, so much as dangerous. Not death dangerous but more naked dangerous. If I am going to escape from here at all, I will just have to do it in my birthday suit. There is no other option. Wearing pyjamas in bed in a hospital is so seventies. It’s so Carry on Doctor. It’s so hospital. I couldn’t wear pyjamas and escape.
I do actually have pyjamas. I just choose not to wear them in bed.
PYJAMA MANOEUVRES
1. Brush my teeth.
On 350-mouth ulcer days, brushing my teeth feels like scraping the inner cavity of my mouth with a cheese grater.
Instead of a toothbrush, I use a tiny dental floss stick that has absolutely no cleansing effect but does allow me to feel just a tiny bit normal amidst the oral insanity.