Love For Now

By Anthony Wilson

The sun has just popped out, after a heavy shower; the washing line a string of pearls. It s time to live. On Valentine s Day, 2006, Anthony Wilson was diagnosed with non-Hodgkin s lymphoma, a cancer of the lymphatic system. He was 42. In this journal of the days that followed he contemplates love, family and mortality alongside celebrations of Peter Osgood, Ivor Cutler and cooking chicken while listening to funk.

• Language: English
• Publisher: Impress Books
• Release date: Sep 9, 2021
• ISBN: 9781907605369

Book preview

Introduction

I was formally diagnosed with a variant of non-Hodgkin’s lymphoma, a cancer of the lymphatic system, on Valentine’s Day, 2006. I was 42.

Despite my friends’ protestations that it was ‘probably nothing’, the diagnosis, when it finally came, was not a surprise. A shock, yes; a surprise, no. Just as the treatment for cancer changes your tastebuds, it also heightens your need for the truth.

I looked for the truth about cancer in many different places. Like a good patient I read up on my disease, seeing it as homework. I quickly gave up. What difference did it make how much knowledge I had of the mutating cells in my body? However much knowledge I gained about them would never change their behaviour.

Some of the least satisfying sources of truth about cancer are the media. Coming to terms with a life-changing diagnosis is hard enough, but it is harder when the story you are living through and trying to make sense of also exists in a parallel universe of cancer as portrayed in the lives of celebrities, soap operas and sports personalities. It goes without saying that however frank these representations pertain to be, they ultimately fall short of one’s own lived experience. Therefore, the risk inherent in writing this book is that, however accurate its portrayal of cancer and its treatment, it will fall short of the reader’s own experience. Every one of us whose lives have been touched by the disease has a unique story to tell. All I have attempted to do with my own story is to tell it as accurately as possible.

As my treatment for cancer progressed, I became sensitised to its depiction in the culture at large. In particular I was struck by the use of the metaphor of war to describe individuals’ experience of the disease, often written or spoken in the past tense: ‘X has died today, after a short/long battle with cancer’. If there is one difference I wish to make with this book, it is to challenge the use of such metaphor as the predominant discourse of cancer in our culture.

Speaking personally, describing cancer as a ‘battle’ or ‘fight’ places the onus of recovery onto the patient when they are at their most vulnerable. Not one of my fellow-patients and friends who have been diagnosed with cancer has perceived themselves as fighting this battle. If it is a battle, let it be one for the doctors and researchers, who can at least go home in the evening without throwing up their lunch.

Secondly, war metaphor unnecessarily romanticises cancer. The past tense so often used to describe individuals’ ‘battles’ is a tacit reminder that the battle has been lost. None of us like to think we are on the losing side, especially when it comes to the ultimate question of death. Describing cancer as a ‘battle’ is something of a protective device, therefore: we can live with the loss of a loved one because we can persuade ourselves that ‘they gave it everything’ before they died.

The truth about cancer is less likely to appear between the pages of a glossy magazine, in the teary recollections of those we invite into our homes at the flick of a television or radio switch, nearly always after the event and by necessity somewhat airbrushed. It is more likely to be found in the unexpected acts of kindness one encounters; the visits and gifts of colleagues and friends; the humour of doctors at moments of crisis; the simple everyday gift of family life continuing around you. In my view, and with one or two honourable exceptions, these are not remarked on in the literature of cancer with anything like enough frequency.

The story related here, is, therefore, my attempt to be true to the experience of living with cancer. If you are reading this there is a fairly good chance you are doing so because you have cancer yourself or know someone who has. My story is not going to be the same as your story, nor that of your friend or relative. But in saying what happened to me, and relating as precisely as possible the words that were said to me, in the order that they were uttered, I hope they create a space in which the reader’s own experience, however different, can be reflected upon and spoken of with those the reader knows and loves most closely. I began writing this book in an effort not to forget what I was going through; as the writing progressed it became a debt of honour, to my family and friends, and to the doctors and nurses who treated me. I hope that reading this book will provoke conversation between those who experience cancer directly or in the lives of loved ones. I would argue that we remain uncomfortable about doing that in our culture, the evidence of which can be seen in our over-reliance on metaphors of war to describe experience of the disease. In such a technologically advanced age, this is surely a very great irony. Only by speaking about our experiences honestly, without resort to such symbolism, will we say how it really is. To do that, we need to start with the events as they occurred.

Anthony Wilson

Exeter, March 2012

Prelude

August, 2005

‘Dad?’

We are on the M6, in bright sunshine, driving home from our summer holiday in the Scottish Borders. An old Smiths compilation is going full blast as our campervan is overtaken by a juggernaut. At the very point that its slipstream sends us swaying almost into another lane, Morrissey can be heard extolling the virtues of meeting his death under the wheels of a double-decker bus. The irony is not lost on me, and my fists pound the steering wheel with pleasure.

‘Dad?’

‘What? Sorry. What?’

Merenna, my daughter, has crawled across piles of luggage and twisted herself round to face the direction we are travelling, resting her head between the two front seats.

‘Dad, when we get home, can I burn this CD off you?’

In a few weeks Merenna will start a new life, at secondary school.

Our holiday has also been one of transitions: music has blared from bedrooms, appearances at breakfast have been silent, or rare. Family walks, always something of a battleground, have still been undertaken, but now we stretch across hillsides in an unruly line, where once we marched in a clump, holding hands.

‘So, Dad, can I?’

I still regard seeing the Smiths at the ICA in October 1983 as one of the most formative experiences of my life. Though I heard it only once, I sang ‘Reel Around The Fountain’ under my breath for the whole of the next week. When I first went out with the woman who is now sitting next to me I pretty much knew the instant she said her favourite song of theirs was ‘There Is A Light That Never Goes Out’ that we would get married.

So when my daughter, recently awake on a motorway, expresses interest in the band I fell in love to and with, something hard-wired in my DNA shouts ‘Yes!’ at the windscreen and punches the steering wheel a little bit harder.

I do none of this, of course.

‘What, the Smiths, of course you can my darling. Any time you want.’

From even further back in the van my son Shimi asks if he can borrow it, too. Tatty and I exchange glances. She knows how pleased this has made me, and how hard I am working to feign nonchalance.

Seven hours later we stumble across the threshold of our house in Exeter, the doormat a choppy ocean of mail. Among the usual bills and postcards of holidays from friends there is a letter from Peter Carpenter, my editor at Worple Press in Kent. It tells me he has decided to take Full Stretch, my next book of poems, and what what’s more, he is going to add selections of my previous books, now out of print, to the new work. ‘It’ll be a bumper edition,’ he says, ‘and we’ve pencilled it for the spring.’

Much later still, our bags unpacked, Tatty says into the darkness ‘What was the best bit of your holiday?’ This is one of our rituals. We ask the same question of each other every summer, however the holiday has gone. For once it does not take me unawares.

‘Was it getting your book contract?’

‘No. It was the kids asking to burn the Smiths off me. I feel I’ve finally arrived as a parent. Whatever else happens, at least I’ve passed on that.’

Diagnosis

7 February, 2006

Is there a moment when you know?

From my ultrasound to my biopsy took just 11 days. It was when the scan-doctor said I would need a CT scan in two weeks and they made an appointment the same evening for me to have one 48 hours later that I really got worried. The CT was a Thursday. They said ‘You’ll know the results in two weeks,’ but my GP phoned the next morning, asking to see me. This was even worse.

Tatty took that day off, so we could see him together. He said ‘If this abnormality hadn’t been pressing on your urethra and therefore giving you pain, we may never have known about it. It’s a blessing, really.’ He confirmed that it was indeed solid – not a polyp or a cyst – and on my lymph nodes. I asked him directly if there was a possibility that it was lymphoma and for the first time he looked away slightly before saying that yes, he couldn’t rule that possibility out.

I’m at home now, propped up on the bed. Officially I won’t know for sure for another 10/12 days. But right there, in the GP’s face, and in the way he reached for an envelope to send my notes in with me to hospital, there was a tensing and a reluctance and a pursing of the lips. The merest hint of a nod.

And that was when I knew.

At the same time, I know nothing of course. All to play for. Not even half-time. Plenty left in the tank. ‘It might be completely benign, probably is, you know,’ as a friend said on the weekend. (This is well-meaning, but bollocks, intended to reassure them more than me.)

The first discussion with the senior staff registrar at the Emergency Medical Unit said it all too, but in a different way. Her name is Esther. She is smiley, hair up at the back, glasses, the trace of a Northern-Irish or Northern-Irish-Scots accent. She has pink chubby fingers and puts her hands out to touch me a lot on my forearm and my shoulder. She began by asking me what I knew.

She stopped me, two words in, when I said ‘tumour’. ‘Well, we don’t know that, just yet. I think we have to say abnormality for now. We must do, until we know more.’ ‘Right, well, this abnormality, then, is on my,’ I paused, looking at her for reassurance. She nodded, knowing I was going to say ‘lymph nodes’. ‘And it’s pressing on my kidneys. Hence the pain.’

She beamed. ‘That’s right, yes. It’s actually the tube coming out of your kidneys, your urethra, but, yes, that’s why you’re in pain.’

Tatty said, ‘And it is solid, isn’t it?’

We had been told to ask this by a medical friend. Liquid usually means safe; solid means bad.

The smile fell from her face.

‘Yes, as far as we can tell it is, yes.’

She smiled again. But, for now, we’ll run a few tests, then go from there.’ She touched my arm.

‘Is that alright?’

‘Of course, absolutely.’

‘In a minute I’ll have to examine you. I hope you don’t mind me asking, but has your GP mentioned your testicles at all?’

Tatty and I glanced at each other. It’s long been a private joke between us that whenever I go to the doctor’s, it’s always my balls they end up looking at. I’ve had this feeling since I was six.

‘Well, he did, yes, actually.’

Tatty’s hand was gripping mine strongly. I knew if I looked across at her I’d get what she calls church-giggles.

‘He had a little look as well. He said they were fine.’

‘Good. Delighted to hear it.’

Later, after inviting Tatty to step outside the curtain, she did examine them.

She looked up from them grinning confidently.

‘Your GP was right. They’re fine.’

‘Phew,’ was all I could think of to say. ‘But do you mind me asking, I mean, why, now, I mean, if this thing in my tummy is there,’ I pointed at my stomach, ‘what’s it got to do with my b…, I mean, my testicles?’

‘Well, Mr Wilson, we’re trying to go down a diagnostic path here, and the first thing to rule out is the possibility that your lymph nodes have swollen to fight off something elsewhere in your body. And the most likely thing, in a man your age, is that it could be testicular cancer.’

She saw me frown and stopped.

‘So although it’s in here, it could be down there?’

I was doing a lot of pointing again.

‘Yes, but don’t worry. In a man your age and in good health like you, testicular cancer really is treatable you know. It’s the one to have.’

‘Rock on,’ I said.

It made her laugh, and Tatty, too.

‘And how will you know if it is or not?’

‘We’ll do that tomorrow I think. I’m going to book you for an ultrasound scan first thing in the morning.’

‘On my testicles?’

‘On your testicles.’

‘Great. Good. I mean, thank you.’

‘In the meantime, I’ll do my Dracula bit,’ she tapped the tray of waiting syringes, ‘then you’ll be free to go.’

8 February

The ultrasound man wore chinos and a pale green Lee Cooper shirt. Salt and pepper hair, nice smile. They have such a wrapt, alert look of concentration when they look at the screen. It’s close to a look of wonder, part-frown, mouth slightly open. He found nothing in my balls. On the way back to the ward Tatty said their insides had looked like lychees.

Like every doctor so far he had got me to tell the story back to him. When I got to the part about it being difficult to biopsy through my back, hence ‘looking for more, er, accessible material,’ he interrupted, with a rather gruff, ‘Not for us, it isn’t.’

When Esther came over to explain he’d found nothing we inevitably probed her with more questions. She did likewise.

‘Mr Wilson, you remember when I asked you about your alcohol consumption I asked if you ever felt nauseous with it?’

‘Yes? I mean, yes I do. I mean, I do remember and don’t feel nauseous. Why?’

‘It’s one of the symptoms, that’s all.’

‘One of the symptoms of what?’

‘One of the symptoms of lymphoma.’

‘Which means you now think that’s what it is?’

‘We don’t think it is, but we need to test you to rule it out.’

‘A biopsy through the back?’

‘Yes.’

She began again: ‘And night sweats, do you get those at all?’

‘Another symptom? No, I don’t.’

‘We just have to go down the path I’m afraid. Of asking you everything. In case it is. Which we hope it isn’t.’

And then I couldn’t help myself.

‘Why does the lymph system do this? I mean, make growths, abnormalities, whatever we want to call them, when it’s the system that’s supposed to protect you?’

For the first time she looked upset, the guard dropping a little. She waved her hands in front of her hair, gave a tense smile and briefly caught a glance at the ceiling.

She tried to breathe a chuckle.

‘We. We don’t know, Mr Wilson, to be honest. It’s one of the big questions. What we do know is that for some reason your body has made one and that we need to sort it out for you.’

‘I’m sorry. Thank you.’

‘No, it’s fine, you must ask if you need to.’

‘Usually it works like this.’ She perched on the end of the bed. ‘The body has different sites of lymph nodes, where I examined you yesterday, if you remember. When you’ve an infection or some disease the body needs to fight off, these are what makes the body resist it. And sometimes,’ she patted my arm, ‘the cells which do that go on growing once the infection is over. And that seems to be what’s happened in your case.’ She scanned my face and tried on a smile. ‘We don’t know why it happens.’

‘So when you biopsy me, that’s what you’ll be looking for?’

‘Yes, it is.’

The biopsy was not a quick procedure. The radiologist kept emphasising how I’d need to keep absolutely still while they were taking the plugs of material from me because he was using ‘the biggest needle I’ve got.’

‘Will I feel anything?’

‘No. We’ll jab you first with a local.’

‘Good. Which way will you go in?’

‘Through your back I should think. There are too many organs in the front to get in the way. Your small intestine. One of your main arteries. That sort of thing.’

‘Oh.’

‘And even going through your back we’ve only a fine margin of error. So keep as still as you can and we’ll be fine.’ He reached out to pat my shoulder.

I lay on the ironing board on my stomach, and waited.

They were just about to press the green light when they stopped. ‘Mr Wilson, you can sit up if you like,’ the nurse said. ‘Doctor’s gone out for a chat about which is the best way.’

I sat on the ironing board in my gown, my uncovered back now feeling cold. I looked down at my feet and was surprised to see I’d kept my socks on, a pair of woolly ones my grandmother once knitted me.

‘What’s going on?’ I asked.

‘We don’t really know. They’re talking, it looks like, about whether it’s through your tummy or not.’

‘Oh, I thought they’d decided.’

‘Well, they had. Now they’re talking about it.’

The doctor came back in.

‘Nothing to worry about Mr Wilson. It is the back, as we’ve said all along. My colleagues needed to, er, talk it through with me.’

He was standing in front of me, clearly keen to get on with it.

‘So if you’ll resume your position, if you could, that will be great.’

This time they inserted some bedding, a towel or something, just above my knees and ankles. It made a huge difference. I felt my body go limp. Under my cheek they slotted a large sponge, with a paper towel covering it, I guessed to catch my saliva. Another nurse came round to the other side of the polo, where my head would soon be sticking out.

‘Nice and still now, Mr Wilson, if you would, nice and still from now on,’ I heard from above. I began to slide into the machine. ‘First injection coming now, Mr Wilson. This will give us the image from which we’ll work.’

I prayed I wouldn’t shit myself.

‘That’s lovely, Mr Wilson, you’re doing great.’

The machine slid me back to where I had come from.

‘Now, I’m just going to start prepping your back. Bit cold where I’m rubbing you’ – it was cold – ‘and in a minute a couple of sharp scratches.’

I had made the decision to turn away from the main action as soon as I lay down. My hands were joined above my head, just above the paper-covered sponge. I felt someone else’s fingers interlock with mine. It was the nurse. She began to ask me what I did. I grunted. ‘I train teachers. Primary School ones. You know, at Luke’s.’

‘Oh, Luke’s,’ she said. ‘My daughter wants to do Early Years at Rolle. Well, Plymouth.’

‘Good for her.’

‘How long you done that then?’

‘Three and a half years.’

‘Like it?’

‘Love it. I miss it, actually.’

‘I’m not surprised, love.’ She squeezed my fingers.

I heard a tap gushing, the sound of hands greasing themselves with soap.

‘OK Mr Wilson, some scratches now. It’s the local, in order that we can proceed.’

‘Fine.’

‘I’m just getting my felt tip out a minute, X marks the spot kind of thing, then we’ll get going.’

‘Fine.’ He drew on my back.

‘Here come the scratches, Mr Wilson.’

‘Fire away.’

‘D’you feel that?’

‘Yes. A bit. It’s OK.’

‘You’re doing very well. Here comes the other.’

This was much worse. I felt my whole body wince with the pain. The hands from above kneaded mine.

‘I say, Mr Wilson. You’re doing very well. It should take effect soon. Can you feel that?’

He prodded my back.

‘No not really. Just the pressure of your thumb.’

‘OK. That’s great. You really are doing extremely well. Nice and still now while we go in. Did you feel anything there?’

‘Nothing at all.’

The fingers kneaded.

‘And now?’

‘No.’

‘Great. Just keep it like this and we’ll be done in no time. We’re going to send you in again with another shot into your cannula. Then we’ll take out the material.’

Once again the warm jet into my hand. The polo whirred. The hands had disappeared. ‘Take a deep breath. And. Breathe away.’

I reversed back out of the polo.

‘We’ve taken our photo Mr Wilson. In a second you’ll hear some loud clicks. That’s me taking the material. It won’t hurt.’

‘Good.’

The click was very loud. ‘OK. Nice and still, you’re doing extremely well, here comes click two.’

The hands were back, stroking my fingers up and down.

‘And, just to be sure, we’ll take one more, here it comes now.’

Click!

And that was it.

‘Brilliant, Mr Wilson, you did absolutely wonderfully well. Really well done. Nice and still for one minute more while we tidy you up.’

I felt them wiping me with what felt like a small sponge.

‘Nearly done there Mr Wilson,’ said the nurse.

‘Is the needle out?’ I asked.

‘Oh yes, ages ago. Now we’re just making you comfortable. In a minute you can sit up.’

The doors to the CT room burst open. A bed was wheeled in and parked next to the ironing board. A foot started pumping somewhere below the bed and magically it came to rest level with me.

‘So, Mr Wilson, really well done, we’re going to ask you to lift yourself up off the bed and walk your legs across to the bed next to you.’

I felt my legs obey, but my body was not so compliant. Two pairs of arms reached under mine and gently levered me up. I pushed down on the ironing board and slid myself over onto the bed. I looked back at where I’d been lying and was just in time to see a large smear of blood being mopped up.

‘Just a little bleeding,’ the doctor smiled. ‘Really nothing to worry about.’

And then I felt myself being wheeled back through the doors, across the radiology corridor, and into a small bay off it, next to two empty beds.

Tatty was there waiting for me.