Simon Wilson's Cancer Diary part 6: A pretty good scar

Simon Wilson, who has had surgery for prostate cancer, is urging more men to take the test. Photo / Doug Sherring

It was like we were the chosen ones, today's lucky few. Gathered early in the morning and led on a long walk, anxious but obedient, through concourses, in and out of lifts, along corridors, to a waiting room with changing rooms, where we took off our clothes and put on gowns and went and sat with our loved ones as they hugged our coats and bags to themselves. It did not feel like we were going to any special place.

We put on surgical stockings and then, one by one, we were led away.

Names and dates of birth, checked and checked again. The procedure explained, and then you're asked to explain it back to them. It's a check that your consent is informed consent. Oh, I said to my surgeon, Mr G, I'm really sorry but I forgot to mention I also have a hernia. Same side.

No worries, he said, grinning the grin of the supremely confident and not at all betraying the inner explosion of wtfs he must have been really thinking. It's on the same lateral, he said, I'll fix that for you too. And he did. Surgical mesh is now my friend.

In the operating theatre he showed me the view from the windows: the Waitemata, North Head. Of course we close the curtains for the duration, he added.

So they won't be distracted, I suppose. Good to know.

That's all I remember. Did they put a mask on my face? Did they make me count backwards? Did I see an array of surgical instruments, waiting just for me?

Suddenly, mid-afternoon, I was awake in the ward. A nurse had said my name and P was waiting outside. I could not recall a single thing, not even about the dream I'd been having right up till that second. It was over. I was alive.

I had four tubes in me. Oxygen up my nose. Fluids laced with tramadol, which is a synthetic morphine, flowing in through a tube in my hand. Streaky blood flowing out through a tube that emerged from my lower belly, just to the left, and snaked down to a gruesome-looking bottle standing on the floor.

Draining my innards of the surplus liquids that were pooling in my abdomen on account of all the flesh they had to slice through. Yes, it looked ghastly, but also fascinating, and it was painless.

When it came time to take this tube out, the day I left hospital, Nurse H told me to take a deep breath and then he started pulling on it. Gently but firmly. He pulled out maybe 20cm and stopped, and told me to take another deep breath. Then he pulled out the rest. It seemed like there must have been 30cm of that tube inside me, and now there it lay, coiled haphazardly, slickly, on my stomach.

There was also the catheter. To start with I loved my catheter. I could lie perfectly still, filled with the comforts of morphine and tramadol, not having to endure any of the pain of moving, my ablutory needs well taken care of.

It wasn't painful either. Even when the morphine in my spine wore off and various pains and itches took over, the catheter itself remained benign.

Everything they say about hospital staff is true. The nurses were great. Nurse H especially. He'd been on the ward 16 years, he told me, and with all the patients he was a font of reassurance, wise advice, practical help. Nurse H was in demand, all the time.

The day I left hospital he bent confidentially over me in the bed and asked, are you circumcised? He wanted to know because he had some advice for me when it came time for my first shower.

I was a bit surprised – couldn't he tell? I had a look and realised that no, he couldn't. My scrotum looked like Jabba the Hutt. It had completely swallowed up the penis, so that the catheter just disappeared into the flesh in the middle.

I'm sorry, maybe that's a little too much information. It didn't stay like that. One of the pleasures of the first 10 days or so after prostate surgery, and there aren't many, is to notice, day by day, that your genitals are returning to normal.

I had it in for eight days. On the third day I went home and it was still fine. By the sixth day it had become a sore in my penis that never let up. The day the district nurse came to pull it out, same technique as with the other tube, was a great day. It hurt, but not a lot. Those district nurses were great too.

Ten days later Mr G rang with the test results from the surgery. He'd already asked, should he call, and I'd said yes. I was ready for it.

Good news, he said. We got the negative margins, he said. Cut out all the cancer and then some. I would not need radiotherapy and certainly not chemotherapy. Very good news.

Of course there was a but. He took out 17 lymph nodes, from both sides, and four of them showed evidence of the disease.

The lymph system is a distribution network in the body, so at some stage the cancer will show up again, somewhere new. When it does, they will zap it with radiotherapy. That's the plan.

You're going nowhere in a hurry, he said. There will be no rapid decline. You'll still be here in a decade and beyond and you will be likely to need more treatment at some stage.

We'll do a new PSA test in a few more weeks, when everything has settled. They want it down to zero, or good as, and it's likely it won't be there yet, so I might need some hormone treatment. But we'll see. The PSA might fall to zero over a few months without any help.

We've done the right thing, he said. I said I did not doubt it.

So now I know. All else being equal, this is the thing that will kill me, one day, but right now I can go back to worrying about mundane things, melanoma, say, or getting knocked off my bike by some random motorist.

He used the phrase many, many more years. I'm calling it a win.

By the way, he said, how's the wound? I said it was pretty good and I was going to get Dr A to check it, maybe remove the bandage.

Do it yourself, he said. Rip that thing off now.

So I did. And yes, I do have a pretty good scar.

You learn so much. It feels to me like I've barely started to process it yet, though I know I will. But three things I do know.

One is, get the PSA test. There are medical arguments about how reliable PSA tests really are, but forget that. They're better than the finger exam.

There is official concern that if too many men get their prostate checked too often, the system won't cope. Forget that too. Get the test, every year from age 50, at least.

Surgery isn't the best thing for everyone, even for some men who catch it early. That operation changes your life, not in any good ways, so in my view you do it if you need to save your life. It's painful for a long time afterwards too. I've spared you the details.

They say most of us have prostate cancer when we die, but for most of us it's not the thing we die of. Regular, frequent monitoring might be all you need.

But you need to get the test. GPs have been under instruction not to raise the issue themselves, so you have to do it. Insist on it. Prostate cancer kills more men than it needs to, and we can bring that number down.

The second thing is, pain is bad. Pain inhibits recovery. Dealing with it requires changing the habit of ignoring it until you can't.

And the third thing? I'm lucky. It doesn't go so well, for many, many people, I know that.

I do want to say thank you. To my doctors, especially, who saved my life. To my family and everyone who has looked after me. And to all the people who have written, with their own stories, with all kinds of advice - personal, medical, nutritional, spiritual - and honestly, some of it I will take. Everyone has a story, and those stories connect us. Everyone has such love and goodwill. Even, I'm sure, the guy whose entire message was "You are writing self-indulgent twaddle." Fair enough. Endearingly, he insisted I acknowledge receipt of his email.

• This is the final instalment of Simon Wilson's Cancer Diary, although he says he may return to the subject, for one reason or another, at a future date.

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