Prostate cancer no longer secret men's business

A bright Queensland spring day in 2011. I sit hunched next to Dad, keeping vigil as he slowly succumbs. I gaze across a wasted body, a scraggy 45 kilos of flesh and bone-all that is left after years of fighting cancer-his face a waxy parchment hue. I gently stroke his clawed hand, tense with pain and mapped with purple-blue veins, and imagine death kneeling on his chest, squeezing away life. His breathing rattles; the death rattle. His eyelids flicker.

My mother had written to me years ago, telling me that Dad was having problems with his prostate. Why had he ignored that early warning?

Dad has had to seek some medical advice and goes to have an X-ray tomorrow for his stones in his prostate. A couple of weeks ago, he was having pain and I finally persuaded him to see the doctor. –27 May 1982

The specialist said he was too young to have the prostate operation. That made him very pleased. He's feeling a lot better now and looking it.–15 June 1982

Dad's just been refused some life insurance we wanted to take out. They wanted a 50 per cent loading even though they made him take a medical-it's his prostate stones which are the problem.–18 July 1983

Three years later, mid 2014, in the early morning gloom, the bed cover is quietly turned back. It is frigidly cold and dark. There is a faint rustle as my husband pulls on some warmer clothes and pads softly across the timber floor boards into the lounge.

And there, for the next half an hour he doggedly goes through his exercise routine. It has been the same every morning for the last 18 months.

Later that day, when he comes home from a long and arduous day at work, he explodes in sheer frustration, banging down his bag on the kitchen bench. "Why did I have the bloody surgery? What was the point? I wish I'd never gone ahead and had it done!"

My husband had a radical prostatectomy in November 2012, little more than a year after my father died of prostate cancer. He wasn't expecting the side effects to be as bad as they were, and in talking to a number of men while writing this article, it seems to be a common theme. His frustrations are felt by so many who experience erectile dysfunction and urinary incontinence, among other side effects, as a result of surgery for prostate cancer. It is important to ask all the right questions before you have surgery in order to manage expectations. Unfortunately, for my husband, his choices were limited.

I try to reassure him. I would rather he were here, with years still to live and enjoy, than watch a repeat of a lingering death. Yes, there have been persistent side effects: a bit of urinary dribblage; difficulties in that other, more intimate, part of our lives. But he is healthy. Even so, these side effects cut to the core of who he is; they bring into question his manhood.

My husband is a non-smoker, he is not overweight, nor is he a drinker. He could probably do a bit more exercise, and he works long hours in a challenging job. The exercises he makes time for are to improve his urinary incontinence, which is bad enough to frustrate him. And bad enough to feel embarrassed about getting plain-cardboard-boxed incontinence pads delivered to our door. He often questions whether having the surgery was the right decision.

That "other thing", that intimate part of our lives, we are gradually getting sorted, although that has caused quite a bit of heartache. It will probably never be quite the same as it was-spontaneity is an elusive chimera-but as a couple we are content.

Yes, we know about prostate cancer in our family. My brother, who lives in the UK, had the same operation in the months before my father died. Some nerves were cut during his surgery, so now it is a case of "thanks for the memories". Not much fun for a man still only in his mid-50s. He feels the same sense of frustration as my husband. He copes well, and just says that when he goes to the pub for a relaxing beer he needs to take "precautions", because the beer relaxes other parts too!

Both of them fared better than my father. He was finally, irrevocably, diagnosed with prostate cancer in early January 2006, and, because it was so advanced his testes were removed less than a week later. Now that was a serious shock. It seems, since those first hints back in 1982, he did what a lot of other men have done before-and since-ignored the problem.