Just before Christmas Simon Wilson was diagnosed with prostate cancer. Here's part four of his diary.
Sometimes you think about death. Sometimes you think about sex. Apparently it's possible to have half an erection.
No, not like what you're thinking. You can have a problem on one side of your penis – in my case the right – which is what will happen if they cut out all or part of the seminal vesicle on that side. All the nerves will go too. But they might be able to preserve the nerves on the other side. So, on the left, striving for attention. On the right, droopy. Like a flag sagging on a flagpole, or something. What does that even feel like?
I went back to see my GP, Dr A, and we talked about boring little things like whether any of the blemishes on my face are also cancerous. I had two spots burned off a year ago. She prescribed a cream that will make my skin crusty and blotchy and she was right to do so but I can't even begin to think about adding that to the mix. You want one thing at a time, even if that's not how bodies work.
Dr A thinks I should choose surgery, if the choice is offered. She was clear and that was helpful. Get rid of the cancer, if you can.
As I was paying she called me back and I knew what she was going to ask. Could she have another feel, do another rectal exam, to see what she missed?
The prostate is flatter, she said, but the roughness on one side is still hard to identify. She said she had assumed I would have an obstructed urinary canal, because of the flatter prostate, but not cancer. And she was right, that is the more common cause.
• Part 1: The day the phone rang
• Part 2: A urethra runs through it
• Part 3: What you keep, what you lose
• Part 5: How the surgeons will slice me open
• Part 6: A pretty good scar
• One year on: Into the blue
Mr C, the urologist, called, ahead of our meeting with a surgeon tomorrow. He confirmed I am T3, because the cancer is locally advanced: it's spread to tissue touching the prostate gland. It's got to be dealt with, as soon as possible. He used the phrase multi-modal treatment, which means surgery, radiotherapy and hormone therapy.
And yes, I have been reading. After surgery the possibility of ongoing urinary dysfunction will be <5-30 per cent. The possibility of erectile dysfunction is 100 per cent, but curiously ejaculation is at 50 per cent. Half the flagpole, perhaps. The chance of the surgery killing me is less than 0.3 per cent.
P and I walked into Mr C's consulting room at Greenlane Hospital expecting to agree on surgery and walked out believing that was less likely. What changed? Nothing high-tech, no sophisticated new medical thinking, no subtle reinterpretation of the evidence to date.
Nope. It was when Mr E, the surgeon, stuck his finger up my bum, just to check, and discovered that things did not feel quite as the reports had led him to expect. So then Mr C did the same, and the consultation suddenly took a different tack.
First up, though, was the bladder exam. Turn up with a full bladder, please, they asked. Which is all very well but in my condition it's not easy just to have a full bladder. When it's full you have an urgent need to deal with it. Nurse F understood, I'm sure, and came to get me as soon as I arrived, to escort me briskly to the bathroom.
You pee into a bucket with a delicately balanced round plate at the bottom, for measuring the pressure. The urine runs out past the plate and collects in a measuring jug. I squeezed out every drop and it came to 240ml.
Nurse F met me in the corridor and took me to another room for a bladder scan. Is it ultrasound? I asked. Sort of, she said. I lay down, she gelled my lower stomach and pressed with the rounded knob and announced there was still 170ml of urine in my bladder.
There it is: the reason a man like me waits in movies for a scene with neither plot exposition nor unmissable drama, legs crossed, bladder subjecting you to waves of pain. The moment spotted, you bound up the cinema stairs, fast-walk to the bathroom, urinate less satisfactorily than you had hoped, return to your seat, enjoy being comfortable and then, about three minutes after you sit down, realise it will not be long before you have to go again.
Even that day. I spent nearly an hour with Mr C and halfway through I just had to excuse myself and nip down the corridor. By the end of the consultation I needed to go again. You can't make good decisions when your bladder is bursting.
I'm sure you get this a lot, I said to Mr C, but he looked at me blankly. Well, he must.
He's a bit older than me. He has the comfortable-in-himself quality of all older medical men – happy to be wise – and is perhaps not entirely sanguine about the perversity of the world. I couldn't quite shake the impression he thought people like me shouldn't get prostate cancer. Regular checks and early intervention, why had I not got the message? He's right to wonder.
He was friendly, though. They're all friendly. It's not a cancer thing, especially, in my experience – medical staff are invariably friendly – but it's acute when you've got cancer. They really care, and not in the helpless way the rest of us struggle with. Practical, sympathetic, treating you like an adult, making it clear their skills are at your disposal.
He looked at his screen and said there were six biopsy samples on one side and three on the other. I said Mr B had done five on each side, I'd counted them as they went in. He said no, the report said six and three.
My God, perhaps it was all a ghastly mistake and they were working with someone else's results! I struggled to suppress the idea and said I would call Mr B.
On his screen, Mr C showed us the results of the PSMA: me, in cross section, from brain to hips. All greys, with certain organs highlighted in vivid colours. It's freaky and also empty. You can see what you're looking at – that's my heart, that's my bladder – but you don't know what you're looking at. Really, there's an indication of something there? And why aren't you worried about that blob over there?
We talked about surgery. People aren't right for it if they're too old, too overweight, too sick. I told him there is now a layer of flab over my chest and stomach that didn't used to be there and he laughed. So was surgery the best bet for me?
We went round and round. I felt like there was something I was supposed to know, but didn't, and that he didn't know that I didn't. Possibly that some men say oh no doctor you've got to do everything you can to save my sex life. Possibly that surgery is so final. Probably that he just wanted me to make the decision and not expect him to make it for me.
It would be soon: before the end of February, with a couple of days in hospital and three or four weeks' recovery. I had some commitments in early March, so I asked, does the timing make a difference? He said if it was him he would put his health first.
They'd take out the prostate, and go wide on the right hand side to include some lymph nodes. He's worried about microscopic cancer: as I thought, a PSA of 43 suggests it may have spread more widely than the scans have revealed. The lymph nodes should reveal if that had happened.
The urethra runs through the middle of the prostate, so they have to sever it and reconnect it to the bladder. That means urinary incontinence, for weeks, maybe months, maybe not longer than that.
The alternative is hormone therapy now, for some weeks, to reduce my testosterone level. Then a small operation to ream out the prostate, so the urethra can function better. Then radiotherapy. All the while testing the PSA count to see if they're getting it down to the <0.05 mark where it belongs. No, the decimal point is not wrong. <0.05 means zero. And then a lot more hormone therapy.
Probably the biggest side effect, he said – from the hormone therapy as well as the radiotherapy – is that I'd feel very tired. I'm already tired. I have to get fit. Getting fit makes you tired. Just another way in which this whole thing is so not right.
Actually, my tiredness has a cause. I get up in the night, invariably once, often twice, sometimes more. Mr C gave me alpha blockers to see whether they would relieve the pressure on the urethra so I could empty my bladder more completely.
But bloody hell, you have to drink a large glass of water with the drugs, right before bed. It's a cure that sabotages itself. The first night, I was up three times.
A few days later I stayed with a colleague on a work trip out of town and we went to a party. That night, did they notice I got up five times? In the dark. I bruised my shin on a piece of furniture. I trod on the sleeping cat.
Mr C called in the surgeon, Mr E. He was younger, more decisive, and keen on the surgical option because he was confident he could create negative margins: cut out the gland and the tumour and tissue all around them that had no sign of cancer in it.
Then he did the finger exam and changed his mind.
He said the cancer felt more advanced than the MRI had indicated and he didn't think he could create negative margins after all. He was therefore a little inclined against surgery. Mr C said he might as well have a feel as well. He wanted to disagree, I'd say, and needed to know enough to do it effectively.
They played to type. Mr C is the more experienced expert; Mr E is the young tyro with international qualifications. Mr C was more cautious and tried to slow Mr E down; Mr E liked being decisive. They agreed to take it to their multidisciplinary group meeting tomorrow. They didn't know what to do.
P, who stayed in the room for all this, said later there was a moment when it all came into focus for her, and I said I know, it was when Mr C said five to 10 years. Yes, she said.
Mr E had looked startled and quickly added, it could be longer than that. It could be a lot longer than that.
What does five to 10 years mean, with cancer? That I'm not going to die soon and really they don't know more than that, except that it will catch up with me one day. Isn't that it?
They had their interdisciplinary meeting and they still couldn't decide. On the phone Mr C said the radiotherapists want to do radiotherapy but clearly he was not convinced.
Me, I've gone right off surgery. I'd psyched myself up to regard it as just part of the come-what-may, but now I don't want to be anaesthetised and cut open and debilitated and lose parts of my body and enter the uncertain world of recovery. Exhaustion, pain, perhaps infection, some lurking sense of loss. I don't know, what is it people fear about surgery? Should I fear it too? What part should I fear?
When they say they don't know which option gives me the best chance, isn't that another way of saying they don't know how to cure me?
I asked Mr C, are we still looking for some piece of information that will make the choice clear? Yes we are, he said.
He added that the chance of a cure is relatively small but the chance of control for many years is good. He has another surgeon he wants me to see. I said yes, sure.
Mr B called the next morning during breakfast to discuss the results of his biopsy. Yes, he said, the discrepancy is unfortunate. There are six samples from one side because one broke. But he didn't know why there are only three from the other: two have gone missing, somehow.
What are you meant to say to that? Mr B assured me the biopsies confirm the presence of cancer and the important information at this stage is in the scans.
Did he have any advice? He said, certainly I know what I would do if it was me. Surgery.
He listed the reasons. One, it would provide those lymph node samples. Two, surgery has to be now or never – they don't do "salvage surgery", which is surgery when all else has failed. And three, "You're a young guy, you need functional outcomes."
Right, I am a young guy. He says the nicest things, that Mr B.
You should choose your surgeon carefully, he said. How do I do that? I asked. Ah well, he said, I can see your problem. I've seen them work and you haven't. I gave him the name of the new guy I'm going to see, and he said yes, he's very good.
P and I met the new guy, Mr G, and he didn't muck about. Surgery is the right decision, he said. I think I can get negative margins, going wider. It will be a radical radical prostatectomy and it's the only way to be rid of the cancer.
He didn't promise he could do that. But he did say he believes hormones and radiotherapy won't do it. Surgery's the only chance of cure. Whatever that really means.
He discounted the idea of similar outcomes with both options. True in the larger epidemiological sense, he said, but not for men in my situation. Surgery is better.
Also, there is a thing called treatment regret. When you think, afterwards, that you chose the wrong option. He said it's more common among those who don't have surgery.
Mr G has twinkly eyes and a shock of hair and is so confident he practically bounces. He's like Tigger telling you, oh yes Tiggers eat everything, although being a surgeon he doesn't knock things over. I liked him and I realised I trusted him.
We did the paperwork. Mr G made a phone call and they gave him a date. You should take it, he said to me.
I took it.
Simon Wilson's Cancer Diaries appear each Saturday in the Weekend Herald.