Just before Christmas Simon Wilson was diagnosed with prostate cancer. Here's part two of his diary.
2: A urethra runs through it
What's it like to be my GP, Dr A? Does she go into it thinking, Oh, right, I've got a patient who's going to die? We're going to have that sort of relationship, but he doesn't know it yet and I'm not going to let him know what I know.
As for me, I don't know I'm going to die and maybe she doesn't either and anyway I don't want to know. I don't mean there's no prognosis yet. I mean, the reality of it, the imminence of pain and grief and then gone, I haven't let myself know that yet. I can write the words but I'm doing my best not to think about them. What else can you do? What else should you do?
I went to a Christmas party the day after the biopsy, a Saturday, there were maybe 100 guests, spread through all the ages of adulthood, and people kept saying how well I looked. Even though I still looked a bit puffy from the antibiotic. Maybe it was because I was wearing a decent shirt. You can do a lot of bluffing in this life.
I looked around and I thought, who else? Most people don't tell the world what's wrong with them and half the people here, maybe more, are probably living with pain or a serious illness or both and not saying a word. I'm not special.
• Simon Wilson's Cancer Diary Part 1
• Part 3: What you keep, what you lose
• Part 4: To cut or not to cut
• Part 5: How the surgeons will slice me open
• Part 6: A pretty good scar
• One year on: Into the blue
That same party, two years earlier, was the last time I saw Helen Kelly, the unionist. Medicinal cannabis was top of mind for her then, and she told stories of getting drunk in Cuba, where she'd gone to investigate a "cure", because why would you turn your back on any possibility even when you knew it was nonsense?
Her version of Pascal's wager, I suppose, Pascal being the philosopher who said you might as well believe in God because if he doesn't exist you lose nothing, but if he does, and you don't believe, you lose everything. But I thought it sounded like she'd gone to Cuba because it's a very good place to party and good on her. Helen died of lung cancer the next year.
I spent the rest of the weekend rebuilding a gate and fence at the front of the house. Soaking up the pleasures of buying things at the hardware store, measuring and sawing and screwing and nailing, making something I could stand in front of and know I'd made, and the pleasure of the distraction, and the knowledge that I was doing it for the distraction.
I've had that job on my weekend to-do list since the start of last summer. Done it now. And I went to Star Wars, which I had hoped would be another distraction but wasn't.
Mr C rang on the Tuesday. He's the urologist I've been assigned to in the public system, although I haven't been in the public system yet, post-GP, so I haven't met him.
He said I don't know if you've seen your biopsy results yet. I said no. He said, Oh well I'm looking at them on the screen here. I sat down but that made me feel helpless so I stood up again.
He didn't say, you have cancer. I can't remember how he put it, except I do remember thinking he didn't use the words.
The Gleason score is 7, he said. I knew that wasn't good but also that it could be worse. The Gleason is a 10-point scale which they get by averaging the scores of the samples from the two sides of the prostate – the more cancery side and the less cancery side.
I didn't ask if it's possible to score, say, 4 or less. I mean, I review restaurants sometimes and I doubt I would bother to write about a 4. Restaurants are already halfway damned if they score 7: they're not bad, but they are forgettable because they aren't special.
I'm in worse shape than a 7/10 restaurant, I imagine, although maybe not a lot worse. It's serious, but how serious?
With Christmas looming, Mr C said he would call the urologist who did the biopsy, Mr B, and have a chat about what to do next. He called back to say they agreed: there's a new-fangled scan called PSMA, which is more sensitive and more comprehensive than the alternatives. I wouldn't need a bone scan or a CT or an MRI, and I could get it done on Thursday. Yes, it was expensive.
Let's do it, I said.
We all thought, let's get that full diagnosis straight away; besides, Mr C works only in the public system so he had nothing to gain by sending me private. He was good, answering all my questions, which were usually in the form of me saying I assume this will happen, and him saying yes that's right.
The PSMA is a scan for a "prostate-specific membrane antigen": an enzyme that attaches only to prostate cancer cells. It's supposed to reveal definitively whether the cancer has remained in the prostate gland or spread beyond, and if so where.
If it's still confined to the prostate, surgery could cut it out and I would still, said Mr C, probably, retain the urinary function. That's the good outcome.
If it's in the lymph nodes that will signal it's spreading to other parts of my body and probably won't be treatable with surgery. I'll need a lot of hormone therapy and radiotherapy, and probably chemo too.
If it's in my bones the best thing might be to catch up on that overseas travel while I can.
Hormone therapy means anti-testosterone. What would I be like if I lost the will to score a restaurant – or a politician – less than 7/10?
Not that I like to think it's testosterone that makes me do that.
P and I have started talking about getting the house painted. Getting things done.
At the clinic they start you in the warm-up room, where you change into a gown and get asked lots of questions, and they run an IV line into you. Mr D, who did my prep, was friendly, efficient and large enough to be a blacksmith, except he had very soft hands.
His explanation was great: I won't feel a thing and they'll pick up prostate cancer anywhere in my body, even in my earlobes although not, strangely, if it's in my fingers or toes. So we're taking a risk there, but hey.
After the prep you have to wait 45 minutes for the IV stuff to filter through your body. There were dreary old magazines I could not possibly name, no phone connection because of all the lead in the walls, and – this was their symbol of the value of private health care – Netflix.
That was tricky, though: should I start watching an hour-long episode of some TV series knowing it would get to the climax just when I had to leave? I settled for a half-hour show and then read articles stored on my phone, wondering why I'd bothered to keep them in the first place. At the end I remembered I was supposed to drink that bottle of water sitting right there, and guzzled it down.
That morning in the shower, I had noticed a lump near my stomach. I thought, after a bad moment that did stretch on a little, no, that's not new, it's just a lipoma, which is a harmless fatty deposit under the skin. I've had lipomas for 20 years.
But is it a lipoma? Is it bigger? Maybe I'm just nervous, or maybe I'm not half nervous enough and I really should get a lot more nervous? It's not painful, but then nor is my prostate. I started to tell Mr D. He said, I'm not a doctor, I'm a nuclear technician.
Will I see a doctor here today?
Anyone I can talk to about this?
The PSMA scanner is like a mini-version of an MRI scanner: a donut rather than a cylinder, and you lie on a bed and get passed through the hole in the middle. It takes 25 minutes. Thanks to the water I guzzled, my damn bladder nearly burst.
It's hard to lie perfectly still when you really, really need to pee. This is something that will be known to a great many prostate cancer patients.
Afterwards I had to stay away from children and women who might be pregnant, so I didn't go into the office: I was radioactive for five more hours.
Mr C called the next day. The cancer has not spread to the lymph nodes or into the bones.
Actually, what he said was subtly different. The PSMA did not reveal any evidence the cancer has spread to the lymph nodes or bones.
But the PSMA sees everything, doesn't it? Ah no, I realised, listening to his careful formulation of answers to my questions. There are no absolutes in medicine.
It's good news, though. Really good. I am not going to die right now, or soon. Or even soonish. As far as I can tell.
But there is some indication of the cancer in the base of one of my seminal vesicles. They're the glands behind the prostate that produce most of the semen that sperm swims in.
You hear the words and you don't have any idea what to make of them. I'll be frank, I like having semen. I don't need it. I don't suppose I need any kind of sexual stuff, but I want it.
And yet I know already, if I have a choice, what it will be – give me life and you can have the rest. Honestly, life is all I want. And to be able to see. And to keep my brain working well. But you can have the rest!
Although, I know that I won't truly understand what I want until there are things I don't have – can't do – anymore.
We were, by then, zero working days before Christmas and Mr C said he wanted to do another scan: an MRI. I said what happened to the promise of the one scan to rule them all, the PSMA?
How do I put this, said Mr C. The PSMA revealed where things are at. The MRI will give the detail of what those things are. He didn't say it, but something is less conclusive than they expected and they want to know more.
Surgery is no longer the obvious option. Cutting out the seminal vesicle, or even a good ring around the cancerous part, will not be easy.
Mr C said the merits of surgery and radiotherapy were about even, so I shouldn't feel disappointed. There will probably also be hormone therapy anyway. There may also be chemo.
We agreed to do an MRI in the public system, if we can get a booking by mid-January. And now it was Christmas.
Symptoms of prostate problems
Usually the first sign of trouble is passing urine. A man may notice one or more of the following symptoms:
• trouble getting the flow of urine started, especially if in a hurry
• trouble stopping the flow of urine ("dribbling")
• the stream of urine is weak, or it stops and starts
• needing urgently to pass urine at any time
• feeling a need to pass urine more often during the day, even though not much comes out
• getting up at night to pass urine more than once
• feeling a need to pass more urine, even though none comes out
• pain and/or burning when passing urine; this may be a sign of infection
From middle age onwards, men are advised to see your GP for a regular PSA blood test.
- Source: Prostate Cancer Foundation
• Part one of Simon Wilson's Cancer Diaries appeared in the Weekend Herald last Saturday. Part three will follow next Saturday.