One

Here’s a guilty secret. When I was told I had cancer it made me more interesting than I was before. If not to others, at least to myself. It didn’t make me brave, or tragic, or more worthy of sympathy. But it gave my shapeless life a new definition. It gave me a story to tell.

I don’t know when and where it will end – almost certainly in relapse, possibly in fear and pain. But that’s for the future. Now I am looking back for a point of origin, a single moment in time when interesting things began to happen to me…

On my drive home from work I was held up in traffic every day at the same place, near a roundabout at Cowgate, next to Morrisons. The layout of the area had recently changed, the road had been resurfaced and the pavement edged with artificial grass. Each time I stopped I looked with a new intensity. I was fascinated by the surfaces I saw around me. There was a strange joy in them. Isn’t it amazing that we can make these things, I thought. That we can cover the earth with them. I learned what it meant to caress something with your eyes, with a closeness that is almost tactile. And the longer I stared, the more abstracted I felt, as though the world was flattening into planes and angles, and that if I stayed there long enough I would disappear. I think I realise now that I wanted to disappear, for the limits of my body to be erased.

 

Two

I must have been very young the first time I was aware of someone who had cancer. It wasn’t called cancer then, of course, at least not in my hearing. Even years later my mother would only whisper it under her breath, as though it was something shameful. Why was the word so hidden? Was it embarrassment or fear? Or something darker, like disgust?

Auntie Winnie lived in Valletort Place, at the bottom of my gran’s road near the creek. I didn’t see her very often and she almost certainly wasn’t an aunt. Possibly a great aunt, or other distant relative. Every older woman was called auntie in those days. She always wore a long coat – that much I remember – and her hair was very red. She might have lived alone, but I can’t even be sure of that.

I heard my grandmother and Auntie Edna talking quietly to my mother in the kitchen:

She never told anyone, you know.

Nobody would have known if it wasn’t for the smell.

If you went to her house the smell was so bad, like something rotten. And it was coming from her.

She took off her blouse and there it was, a hole in her chest, all open and rotten.

And I wonder why Auntie Winnie didn’t tell anyone. Was that also fear and shame? Or just the quiet need not to make a fuss? The same as my mother when she fell and broke her pelvis fifty years later, and didn’t say a word.

 

Three

Men’s illnesses were always more public. They were put on view for family and visitors to share. My grandfather’s bed was brought into the front room and everyone sat around, talking about him rather than to him.

How’s he getting on?

Has the doctor been?

Have you seen the state of his leg?

The word I remember was gangrene, and it sounded like a colour. I heard more whispered conversations as I stood in the doorway.

It’s a disgrace. He shouldn’t be left like that.

It’s gone black up to his knee.

One day I was watching tv while he lay in bed in the corner of the room. Gran, mum and the others were in the kitchen. He called out, spoke to me, asked for something – it was hard to tell. And all I felt was fear. I had become afraid of my grandad because he was ill, and I ran to get away from him.

As I was growing up, illness was something that happened to old people. It made them frightening and grotesque, so you couldn’t bear to look at them. It rotted their bodies and emptied their minds.

 

Four

The first time I collapsed was into wet grass on a sunny morning.

It had seemed like a good idea to drive from Oslo to Røros overnight in a borrowed car. In midsummer it would never get dark so the route was easy to follow and the roads quiet all the way. But it had been a hot day, full of busy preparation for the journey, so we were tired even before we set out. Then after three hours the car broke down at a filling station and petrol poured through its damaged fuel tank onto the forecourt. We stood around for two hours waiting for a pickup truck and a replacement car. It was strange to feel so tired with the sky full of light.

We arrived in Røros at seven in the morning and found the wooden cabin in the middle of a field. The day was already bright and the sky clear and blue. I opened the door of the car and fell out sideways. Every pulse of energy that had sustained me through the night seeped away onto the long grass. I lay on my back, completely still, as the cold dew soaked through my clothes and into my hair. And I wanted nothing more than to sink into the deep earth and sleep there for a long time.

I fell again in another country – in Latvia on a weekend trip to Riga. After a full day of walking we were looking for a restaurant on the edge of the city, but we never found it. There were too many dark corners and streets without names. When we headed back to the centre, trying to find somewhere else to eat, I stumbled into a doorway. It wasn’t unexpected this time. I knew it would happen. The effort of walking, of carrying on at all, seemed impossible. There was nothing I could do but give in to the need to fall.

Later I told a doctor about this collapse, and she said that I must have run out of fuel. I thought that I had run out of courage. Now I know that my blood was running out on me.

 

 Five

My grandfather had his leg amputated, then he died in hospital of pneumonia. I must have been told these things because I remember them now, but at the time I just knew he wasn’t there any more.

On the day of his funeral relatives arrived from South Wales and I watched them get out of cars, shaking hands and hugging each other. The women sniffed into tissues and drank sherry from small glasses in gran’s flat. I was probably wearing my school uniform, walking from room to room trying not to be noticed. As I passed her, Auntie Edna caught hold of me, pulled me close and said, You can cry if you want to. And I thought, why would I do that? Why would I want to cry?

Uncle John died as well, a year later. He was my father’s eldest brother. When I went to school I told everyone that his brain had burst. I had seen a brain on tv, in a sci fi programme. It was a giant brain that filled a whole room, pulsing with light and inflated like a balloon. If someone was going to die that’s how it would happen. His brain would burst. That would be something worth telling your friends.

And I wonder if that’s why I don’t dread death now – because I can’t imagine it as vividly as I did when I was a child. The only thing I am sure of is that it will make a good story. Hey guys, guess what happened to me!

 

Six

When I worked in Manchester near the Royal Infirmary I walked past a billboard every day which said: 30% of everyone who reads this will get cancer.

That always puzzled me. Of all the hundreds, maybe thousands of people I had met I only ever heard of two or three of them having cancer. Could that really be true, I thought? So many? Is that really what’s waiting for one in three of us?

At that time cancer meant tumours, of course, which were always described as the size of a golf ball, or a grapefruit. They were monstrous things that grew inside the body and broke up and spread through its fibres like spores. They erupted through skin and left black craters and lagoons of rotten flesh.

Diseases of the blood were very different things. If I thought of someone having leukemia, I pictured them lying with pale skin on white pillows, wrapped in white sheets. They were already ghostlike, falling away from life quietly. I could imagine myself doing that. I still can.

So when I first heard the words blood cancer, I assumed it wasn’t a real thing. How can there be tumours in the blood? Where is its rotten core? I thought people who said they had blood cancer were just looking for a more exciting way to describe their listless bodies.

 

Seven

On Sunday morning my brother called.

Hi. Where are you?

I’m in Poundland buying batteries.

Give me a ring when you get home.

I knew straight away what had happened. Half an hour later I called him back.

Mum passed away in the night.

Yes, I guessed.

Four o’clock this morning, the nurse said. There was no one with her.

I could only think of her lying in the dark, frightened and alone. And I didn’t cry for her death, but for her fear.

 

Eight

I didn’t realise how nervous the doctor was until I asked him to write down the name of my disease. I knew I would never remember it otherwise.

His hand was shaking. He wrote a word. Crossed it out. Wrote it again. Checked his screen. Wrote it a third time.

I looked at the crooked letters, the long string of syllables, thinking How can I even say that?

 

Nine

It must have been after eleven when they took me to surgery. I was either in a wheelchair or on a bed. It’s hard to remember. The hospital was empty at that time of night, the lights dimmed and the corridors cold.

But the room was brightly lit with a harsh fluorescence. Two people were waiting, both masked, one a man the other a woman – the familiar complement of doctor and nurse. I was either laid out or sat up for the procedure. Again I’m not sure. I didn’t feel the incision under my collar bone either, but I knew that the liquid trickling down my side was blood.

An X-ray machine was placed above my chest and if I turned my head to the right I could see the picture on the screen, the tube piercing the vein and pushing down through its narrow channel. I didn’t look, of course, I never do, but the quiet voice of the doctor told me what was happening.

Then a thin plastic collar was fixed under the ripped flap of skin, which he sewed around it. All I felt was the tug of the thread pulling me together again.

Back in the ward I could see what they had given me – three plastic tubes protruding from my chest like the tentacles of a sea creature. The Hickman Line. I worried that they might snag in my sleep and tear from my body, so the nurse taped them to my skin. Ten days later the tubes were removed, hastily, in another late night operation. There was an infection, I was told – candida – and I imagined a frothing yeast gathering inside me like spawn.

For months afterwards the nurses taking blood would say, Have you got a line in? But all I had left was the inky mark of the tape on my chest that I couldn’t wash away.

 

Ten

On my third day in the isolation ward, the chemo kicked in hard. I was warned it would happen. First there was a raging thirst, then my skin reddened and rose up in welts and pustules across my stomach and legs. The young doctor – I think he was young behind his mask and gown – lifted the sheet, shuddered and said “Bless you”. Then my phone pinged.

After the doctor and nurses had left I checked the WhatsApp message. It was from Alastair:

Hi. How are you doing? Send me your list of desert island discs.

This was easy, as he knew it would be. I’d had them prepared for a long time: start with All the Young Dudes and Drive-in Saturday, then work my way through the years to Bitches Brew. I sent him the list and added:

You know I’ve told them I’m not going on the show unless they play the whole of every song.

Next morning I could hardly talk. I lay sweating and twitching in bed. There was a drip in my arm feeding me potassium, magnesium, all the trace elements I’d lost. More masked nurses came and went. Another message from Alastair:

Who are your top ten guitarists?

This was harder. There was Bill Nelson, obviously, then probably George Benson. After that I ran out of energy and ideas.

You know I’m not very interested in guitarists.

Overnight my body bloated. There was a stone’s weight of water in my feet and knees. I spent hours pissing into bottles, weeping with the pain. The nurses brought liquid morphine and cups of tea.

OK an easy one. Top ten films?

Every morning there was another message, which he must have sent over breakfast before going to work. By the time all my hair fell out two weeks later I had replied with the best footballers of all time, top ten sitcoms, American actors, Clash songs and all the shared enthusiasms of our youth.

The only person who was allowed to visit was Julie, and she came to sit with me every day wearing a surgical mask, gloves and gown. When I couldn’t talk, or just fell asleep, she would stay and read for hours. She was always there when I woke up. One day she said:

It’s a pity Alastair couldn’t come and see you.

Yes, but he sends me messages every day.

Oh, good. What does he have to say?

He asks me to send him lists. All sorts of things – music, football, films.

Why does he do that?

It’s how old friends show they love each other.

 

Eleven

Let’s call her Angela. I don’t know her real name and probably never will, but Angela is a good name considering all she did for me.

How much do I know? She was nineteen years old then, which means that she’ll be twenty-four now. She lived in Wales, but probably doesn’t any more. I imagine she has blond hair, slightly wavy or curly, shoulder length, pale skin and a round smiling face.

She’s a student, I’m guessing. Or she was, five years ago. An arts subject, judging from her handwriting on the card she sent, with its large looping letters in pale blue ink. She probably played sport in a university team, netball or hockey, just for fun on Wednesday afternoons. Maybe it was there that she saw a campaign for people to register as stem cell donors. It was such an easy thing to do. Most of the team did the same.

When the letter came, saying that she was a match for someone, her mam was worried but she reassured her. It won’t hurt, she told her. And it will help to save a life. Why wouldn’t I do it?

So she made her donation, finished her course and moved to England. She’s starting her career in marketing now, thinking about getting married and hoping to buy a flat with her boyfriend. Too young yet to have children, she tells her friends, but maybe one day. And as she thinks about the future, where she might travel and what she might do, she wonders about the man she gave her blood and stem cells to. Is he still alive? Where does he live? What is that part of my body doing now, somewhere out there in the world?

 

Twelve

The staff nurse marched into the room playing an imaginary trumpet.

I thought we should have a fanfare!

Two other nurses followed her. One pushed a flat metal trolley with the usual array of swabs and bottles. The other carried a plastic bag containing a pale orange coloured liquid. She held it like an offering, shifting its weight from hand to hand to keep it moving, to make sure it stayed fluid.

Freshly delivered this morning.

So this is the stuff that’s going to save my life?

Yes, this is it.

How long will it take to go in?

Oh, about twenty minutes.

The staff nurse set up the bag on the IV stand, inserted a tube into the nozzle at the bottom and attached the other end to the cannula in my wrist.

That’s it, Ready to go.

She turned on the tap, flicked the tube with her finger.

Twenty minutes and you’re done.

We watched the bag as it emptied its contents into me. Twenty minutes. A trumpet. A fanfare. A gift.

 

 

 

 

 

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