Cancer Diary
Just before Christmas, Simon Wilson was diagnosed with prostate cancer. Here’s part three of his diary
Just before Christmas, Herald writer Simon Wilson was diagnosed with prostate cancer. In the third instalment of his cancer diary today, he goes bush, only to come face to face with his mortality.
For a long time in your life you think, I’m young, I know middle age will come, but middle age starts at an age that is five years older than me. For a long time you think that, whatever age you are.
Then one day you know you are middleaged. This is how you know it. You are standing in a field, and all your friends and acquaintances and everyone you have ever heard of who is more or less the same age as you, they’re all there too. You’re all spread out, the field goes on forever, there is no way to get out of it. And somewhere, you do not know where, there is a sniper. Shooting at you.
People fall over, dead. Not many, not most, but quite a few. No one knows where to look or what to do. Most of you will live and some of you will not, and who gets to be in which group is entirely random.
That’s what being middle-aged is. Your friends and acquaintances start to die, and there is no reason for it, and it is way, way, way before their time. And it might be you.
You’re not even old yet. Old age doesn’t start until at least 10 years after the age you are now. One day I tried to count the number of people I know who have or have had cancer, and I had to stop. It was too many.
It was Christmas. I felt really good and it wasn’t hard to be lively and the rest of the family was lively too. Nobody said anything. How can you? We had a lovely Christmas morning, all together, and then went off to other commitments. P and I drove away on holiday. We have a bach.
A long morning walk around a lake, set deep in the beautiful bush. I didn’t do it thinking will this be the last time, because you don’t do anything like that, because how would that be bearable? But the possibility is there, sitting off to the side of what you do think about.
A kereru flap-whooshed its way on to a branch hanging over the track and didn’t bother to fly off even when a noisy family turned up. Also, I heard the bird that makes the single high note in the dawn chorus. And tui, although on the basis that if you can see them they’re tui but if you can only hear them, they’re bellbirds, these might have been bellbirds. But then, later, definitely tui.
Piwakawaka, heard but not seen, and lots of squabbling blackbirds and thrushes and sparrows. The bird that makes the two-note descending squawk, starting rough and then finding its pure register. And the bird that screeches, desperately, repeatedly, endlessly, alone in the undergrowth. That’s a kiwi, right? I stood and listened for ages.
The bush was thick with the bright greens of a warm wet growing season, and the bright sun dappled through and the lake became a million dazzling winks. I have a friend who wants his ashes scattered here, when the time comes. A good choice. Once, on a blustery bad-weather day, we made a raft from driftwood at the beach at the far end, with a sail, and then we waded, kids and adults, out into the windblown choppy water, balancing the challenge of the cold with the warming excitement of setting the boat to sail.
The summer’s official bird count is up to 24. The first silvereyes turned up this evening, flittingly intent on eating something on the undersides of the leaves of a five-finger. There’s a hawk that sweeps across the face of the forest, cruising for prey. The magpies shout and shout but are quiet as it passes.
Listening to music you find yourself thinking, would this be good at my funeral? I know it’s nuts and really, it feels more like a light-headed distraction than a morbid descent. No more I love yous, sings Annie Lennox, the language is leaving me. Probably not.
My old colleague Hayden Donnell, with his band Great North, singing his endless refrain I will be back before you know it. It’s tempting, although it is religious.
Neil and Tim Finn singing Everybody wants the same thing. To see another birthday.
I’VE RE-SOWN the lawn, laid pavers, trimmed trees, sorted the woodpile, bodgied up a bike shelter, cleared the gutters, reorganised the storage. When it rains, you can spend a long and happy day rethinking what stuff goes where on the shelves.
I thought I’d just read books, write things, listen to the birds. But I get up from the book, mid-sentence sometimes, and it’s a book I’m enjoying, and go to pull out wilding saplings growing where they shouldn’t. Attaching myself to the here and now — and is that because the future is implicit within it?
The MRI is confirmed for Thursday. It’s the Sunday before, now, so only a few days left. I’m on the slippery slope to a decision, which is the slippery slope to something happening that will make my life a whole lot worse, forever. Which is a unit of time that may or may not be long.
Leonard Cohen’s album of dying, If you want it darker, I’m ready My Lord. I don’t know, that doesn’t resonate. But I wish there was a treaty we could sign, I wish there was a treaty between your love and mine, he’s got me there. I do not care who takes this bloody hill, I’m angry and I’m tired all the time. He’s sure got me there.
You don’t really know what to say to the people you love. I don’t. I would write it in a song, if I knew how. Who wouldn’t trade in all their anxious conversations and their thousands of coffee-soaked, wine-soaked words for a lyric and a tune?
In the evenings the huhu beetles fly in and I catch them in my hands and take them outside again. My mother-in-law used to do this, me watching in awe. When I go home it will all start and I would much rather stay here playing music and finding useful things to do with my drill, cooking for the pleasure of eating, walking down to the river to watch the water rise and fall with the summer storms.
GREENLANE HOSPITAL, where the public areas are filled with shuffling people and their anxious relatives, dignity barely masking the fear and confusion. I know
People fall over, dead. Not many, not most, but quite a few. No one knows where to look or what to do. Most of you will live and some of you will not, and who gets to be in which group is entirely random.
that’s how I felt. Everyone looked sicker than me. They probably thought the same thing.
The robe didn’t have one of its ties, so it gaped open and I looked very louche. They let you keep your socks and underpants on, which is more dignified than being completely naked under the smock, but also, because it makes you comical, manages to undermine your dignity at the same time. Dignity seems both important and absurd.
The MRI machine at Greenlane — presumably the same as MRI machines everywhere — beeps and bumps and foghorns away. It’s not painful at all, but it is surprising to be lying there and find yourself being punched, from beneath, through the tubular plastic shell.
They strapped me down and put on a pair of headphones, so I could listen to a radio station. I chose RNZ National and it was an interview on the origins of pumice.
Actually I couldn’t hear it properly, which was some relief, because they also put orange buds in my ears to deaden the thumping and beeping. I went to sleep, more than once, waking myself up with my own snores.
This was the definitive test. The PSMA was also definitive, but it defined a different thing. I fully expect that with the MRI result my urologist, Mr C, will recommend radical surgery, soon as. Don’t ask me why.
And yet I’m not finding it hard to stay positive, although that may be because I’m also staying ignorant, refusing to Google anything at all. There’ll be time enough for that.
In another part of my brain I know perfectly well that the PSA count of 43 was really not good, and nor is the existence of the cancer in a seminal vesicle. It’s not that it’s spread very far, but it means metastasis has started.
It’s tempting to call that part of my brain the rational part, but it doesn’t feel like it. I’m in no pain at all and the idea the cancer has started to spread into other parts of my body feels like an utter fantasy. What’s really happening to me is that none of it has sunk in yet. I’m not being rational at all.
This is not a choice. It’s a powerful defence mechanism — denial. It’s what, I imagine, allows a soldier to jump out of the trench and run at the enemy.
The previous night, arriving home from holiday, there was a copy of a letter from the nice Mr B, the biopsy urologist, to my GP, Dr A.
“It feels like T3 prostate cancer,” he wrote, referring to his own digital examination, done “with the advantage of having the PSA available to me”. That was his graceful way of telling Dr A not to beat herself up for missing it. It was very nice of him.
He also wrote: “I have explained this to Simon.” I’m sure he has. But I don’t remember T3 or metastasis. What I remember is that I listened for some clue from him that I was sliding into nothingness and did not hear it.
Also, I know that since then he’s done the biopsy and they’ve done the PSMA and the result was that they couldn’t find anything in the lymph nodes. If they had, that would definitely be T3. I think.
I really am too scared to look it up. MY UROLOGIST, Mr C, whom I still haven’t met, called with the results of the MRI. He said we now know the cancer has spread, a little, into the base of the seminal vesicle on the right side.
I said, didn’t we know that already? We talked in circles. Why did we do an MRI? What has it pointed to in the way of treatment?
The answer was, they still don’t know. Surgery and radiotherapy offer about the same chance of success, he said, again, and did not offer a reason to choose or the other. I could not process what he told me into a coherent set of information. He was, I decided, trying not to advise me.
He said surgery would be a radical prostatectomy to remove the prostate itself and all or part of the seminal vesicle, and they’d probably do some “lymph gland dissection”. The aim was to get “negative clearance”: to cut out all the cancer with a complete rim of negative, or non-cancerous, tissue around it.
That’s clear enough: leave no cancer behind.
Surgery would also mean erectile dysfunction and urinary incontinence, although he said there was quite a good chance the incontinence would be temporary.
It’s a pretty cruel joke. Like most people, I imagine, I wouldn’t care if I never had to piss again. But erectile function, not just the whole banana but the thousand other tingling delights, what man wants to give all that up? Never having to piss again, sadly, is not on offer.
Urinary function is the more important one, I said.
Well yes, he said.
But, he said, there was a slight difficulty. He talked about the high PSA reading, which he kept calling 45, not 43. The distinction wasn’t important. Low, he said, was under
0.5. Really high was 500 or even 1000. I asked if those were real numbers. Oh yes, he said.
If I chose surgery, when would it be? MidFebruary, probably late February.
We will meet next week, the two of us and a surgeon. We’ll go through it all. Then there will be an interdisciplinary meeting the next day. Then I will get a recommendation.
I’ll go see Dr A, see what she thinks. And give Mr B a call, because he said I could.
But I think I know what Mr C was trying to say. The PSA count and the scans don’t add up. Despite the evidence, they fear that at a microscopic level the cancer may have spread.
Now I will do some reading. Well, maybe tomorrow.