Simon Wilson: My cancer diary, one year on

What's it like to live for a year with cancer? Photo / Doug Sherring

When Simon Wilson started a new job as senior writer with the Herald in 2018 one of the things he ended up writing about came as a big surprise – to us and to him. Wilson had discovered he had prostate cancer. He shared his journey with us in a diary.

"Mr Wilson," said the voice, and I turned to see a man I didn't know, walking with a smile towards me.

"You don't know me," he said, "I was diagnosed with prostate exactly the same time as you. I read your cancer diary. I went through what you went through."

We stood there in the sunshine, two men of a certain age, on the loose, in a rest area in the depths of the Waikato. Strangers who'd jumped straight to friendliness because we knew a really important thing about each other. His name was Paul.

I told him it was a year to the day since I'd had the surgery. He said he'd gone the radiology route, with some hormone therapy too. He held out his hands, puffy and shaped like claws. It was the drugs.

"I can't make a fist," he said. But he could hold a steering wheel. He was from Hawke's Bay, heading to Auckland for an MRI.

I was heading into the country to write about living a whole year after having a radical prostatectomy. We compared PSA counts. We wished each other luck and got back into our cars.

A year isn't much. Although it is. I meet Paul, men like Paul, all the time. One year, two years, 20 years, some of them. There's always an elevated sense of goodwill, of comradeship, and it's real.

It's a side effect of having cancer. The shared pleasure that comes from shared adversity, the easy understanding that you don't have to explain anything, the lack of awkwardness, the relief that generates. The shared knowledge that all you can do is try to enjoy your life, making it as purposeful, pleasurable and valuable – however you want to define and balance all those things – as you can.

Because, whatever happens, you know you're probably going to make a better fist of it than Walter White.

Pleasure becomes more pleasurable. As long as you're feeling up to it, that is. Which will be for how long now?

Every sudden tick of the body, it all means something new. That twinge, that odd dull ache, that little pain that flared and disappeared, are these the teasers to the pain that one day will rule my life?

I spend quite a bit of time thinking about death.

It's back.

Well, it's not back, not really. But it is back. No. Yes. I'm conflicted.

When I was diagnosed, just before Christmas 2017, my PSA count was 43. That's the prostate-specific antigen – the hormone that signals you've probably got prostate cancer. Should have been zero, or thereabouts. Forty-three is very bad, although it can go much higher, even into the tens of thousands. I assume if that happens there's no chance I'll go driving in the countryside again.

A few months after the surgery, in which they cut out my prostate gland along with a "negative margin" –disease-free tissue – all around it, my PSA had dropped to 0.15. Almost completely excellent.

But not actually excellent. They can't measure smaller than 0.05, and I was close. But not close enough. My surgeon had taken some lymph nodes during the operation and we knew from them I still had vestiges of cancer in my body. One day it would re-emerge, and we would then move to the next stages of treatment.

A few months later, 0.15 had become 0.3. My view of this was that 0.3 is insignificant. The doctors pointed out it was double what it had been. By Christmas time last year, it was 0.7. You get the picture.

The surgeon, Mr G, likes to say this is a marathon and I still have a very long way to run. I know what he means, and it's reassuring. He's telling me I've got years to live and I choose, completely, to believe him. I find I'm capable of doing that.

Still, a marathon. That sounds quite tiring. He's not saying, I don't know, a long and leisurely train journey. Am I going to be exhausted for the rest of my life?

You get on with life because what else can you do, or should you do? Photo / Simon Wilson

Also, I assume Mr G would tell me I'm not about to die, using whatever metaphor he likes, regardless of the reality. It's entirely possible he'll be telling me that as they wheel me into the hospice.

For now, we're waiting. There's cancer somewhere in my body but I've had another sophisticated state-of-art scan and they can't find it.

I got knocked off my bike at the end of November, riding back from a clinic session at the hospital with Mr G, as it happens, and damaged the tendons in one shoulder. They're still not right and I think, is that because of the cancer? The physiotherapist doesn't seem to think so. The x-ray showed "no sign of disease" and nor did the ultrasound. Well, okay.

I know, the older you get, the longer things take to heal, if they do at all. One of the oddest lessons of having prostate cancer is that while it requires you to understand, properly understand, that you are going to die, it doesn't tell you what's going to kill you. Melanoma could still do it. Or a stroke. Or a car going faster than the one that hit me.

Also, after prostate surgery, your body doesn't work as well as it used to. It's annoying every single day, although it's simultaneously true that it doesn't seem important. Frankly, I'll be fine if I can get my shoulder fixed.

I don't really think about death a lot. Not my own death. I'm not sure how to do that. It's a not-thing, isn't it? Instead, it's the accoutrements of death that preoccupy me. The things that happen all around it. Songs about death, what people write about it. Funerals.

I saw Peter Wells last month, a week before he died. Peter was the writer who was diagnosed with terminal prostate cancer just a few months before I was diagnosed with surgically operable prostate cancer.

I was the lucky one. We'd both written about it; we met at the launch of his book Hello Darkness. Wonderful title.

Peter was a New Zealand hero. Such a good writer and an uncommonly brave man who stood up for things. Gay rights, and so much more. His movie The Mighty Civic helped save that theatre from the greed and stupidity – the great moral failure – of the 1980s. He had important things to say about Māori-Pākehā relations, about what literature is and can be, about choosing how to live in this country as a man.

He was determined to live well. He was forthright, but with a personal manner that was strangely hesitant: he ventured ideas. He valued precision. He wanted to get it right.

We talked, without small talk. There was no question about what would be the right thing to say. We compared notes, sort of, although I didn't have many notes, not compared to him.

He had the watchful eyes, the interrogative way of looking he'd always had. He said, "I think having the right attitude makes a difference."

I said I didn't believe that. It'll help you cope but it won't stop the cancer. You don't get cancer, or die of it because you didn't have your head in the right space.

I'm not sure what he was really saying. He was dying and he knew it, and being there at all, reading a long, witty, graceful speech, had taken such bravery. He was in a wheelchair and there I was, on my feet, a living testament to the idea that it doesn't have to end as quickly or as badly as it was ending for him.

I was the lucky one. Mind you, when he was at his one-year anniversary, he was in good shape too.

I've been to three funerals in the last year. I realise I'm testing myself: can I still cope with this? At the most recent one, I fell in with a woman with cancer I didn't know. She'd been through much worse than me, but we both took real pleasure in the easy bluntness of the conversation. Talking helps.

She knew it; Paul on his way to Auckland knew it. You cross a bridge to a good place when you talk.

It shouldn't need the threat of mortal illness to let us connect like that. But there's no tie that binds like the one that's going to sever each and every one of us.

What's it like to live for a year with cancer? You get on with life because what else can you do, or should you do? And you try to fill it with purpose and pleasure, with things you can honestly tell yourself are valuable, and all the while you practice getting ready to die.

You can't stop yourself. But you rationalise it anyway: maybe the practice will make the doing easier. I don't know. I drove south, into a sky of impossible blue, and there were the mountains beneath it.