Life with cancer and fighting back

Being diagnosed with prostate cancer is a hammer blow, but the disease is not always fatal, a survivor tells Judy Hobson

Eleven years ago John Fraser was diagnosed with aggressive prostate cancer. He is living proof that such a diagnosis is not always a death sentence.

This Christmas 71-year-old John Fraser will be “prancing around like a luvvie” in an amateur dramatic production of Jack and the Beanstalk on the Isle of Wight.

Strutting his stuff as Sir Dashing in Freshwater’s annual panto won’t embarrass the man who for the past four years has put his underpants on over his trousers and led a coastal walk around West Wight.

At the time of his diagnosis, John and his wife, Ann, were living in Moreton-in-Marsh in the Cotswolds, where he ran an industrial cleaning business. Since then he has had radiotherapy, cryosurgery and is currently on monthly hormone injections.

“I was fit and healthy and only went for a PSA [prostate-specific antigen] test because Ann had read an article saying all men over 50 could discuss it with their GP. She kept badgering me to go. Thank goodness she did, otherwise I wouldn’t be sitting here getting ready for pantomime rehearsal,” says John.

The test showed John’s PSA level was 7.3 ng/ml and raised alarm bells. The normal level for a man of 60 is 4ng/ml. Further examinations revealed there was a tumour inside his prostate gland. Surgery was ruled out because it was so close to the edge of the gland. Instead John had 36 daily sessions of radiotherapy at Cheltenham General Hospital.

“Being told I had prostate cancer was like being hit with a sledge hammer. Ann was with me when I got the news. Afterwards we just sat in the car and cried. I would have loved someone to have taken us aside to explain what my options were,” he says.

Prostate cancer may be inconvenient from time to time, but in life you have to deal with whatever it throws at you

“At first it was an emotional rollercoaster. I’d wake up at 2am fearful I wouldn’t see my grandchildren grow up. What helped me through this period was talking to the specialist nurses on Prostate Cancer UK’s helpline.

“I also got tremendous support from Ann and my three grown-up children. Whenever I went for treatment I would turn on my mobile and there’d be half a dozen loving messages from them,” says John.

A year after his radiotherapy finished, the couple moved to the Isle of Wight. John explains: “We had a holiday home here and just love the island so we decided to move here permanently. I’m sure the different, more relaxed way of life has helped.”

However, four years after his initial treatment, John’s PSA level had risen again. This time he underwent cryosurgery where freezing material was injected into his prostate gland.

“Since then I’ve been impotent, but I’m still alive,’ he says. “Ann and I have a relationship that doesn’t just revolve around sex, but I admit it did bother me initially and we tried pumps, Viagra and injections.

“Nothing worked except the injections, but sticking a needle into the old man made us laugh so much that the moment was lost. Now we read lots of books at bedtime.”

Because of the support he got from the Prostate Cancer UK, John decided to start fund raising for them nine years ago.

“My first event was a shoe shine outside Sainsbury’s in Newport. I chose a shoe shine because this condition affects older men and they’re the ones who wear shoes you can polish. While their shoes were being polished I told them about prostate cancer,” he says.

John first wore his underpants outside his trousers in 2009 when he organised a fundraising coastal walk from Yarmouth to Freshwater. “I was keen to draw men’s attention to their bits and urge them not to be embarrassed about discussing problems down there with their doctor,” he says.

He has raised more than £22,000 and is already planning next year’s walk on Easter Sunday. John is also at the end of a phone whenever someone newly diagnosed on the island wants to talk to another man with the disease.

Two years ago his PSA level went up again and he now has monthly hormone injections. “Prostate cancer may be inconvenient from time to time, but in life you have to deal with whatever it throws at you, not sit in a corner feeling sorry for yourself. Anyway, Ann would never let me do that. And look at me, 11 almost 12 years on, I’m still laughing, talking and, above all, alive.’

CASE STUDY 01

Husband and wife

Talking about her husband’s prostate cancer, Ann Fraser, 56, says: “I’ve always thought of it as our cancer, not John’s. We’re in this together and it has proved an incredible journey.”

The former systems analyst adds: “The news John had prostate cancer was a shock. I’d urged him to go for a PSA (prostate-specific antigen) test, never dreaming there’d be anything wrong because he was so fit and healthy. Thank goodness he went because the sooner this cancer is picked up the better.

“Initially I thought I was going to be a widow in my 40s. Luckily though, I’m a matter-of-fact person and realised I had to be strong for him. I held on to what everyone from his GP, nurses and specialists were telling us that most men die with prostate cancer, not of it, particularly if, as in John’s case, it’s caught early. That gave me reassurance.

“It’s almost 12 years since his diagnosis and John’s still here, a fine figure of a man. Looking at him, you wouldn’t think there was anything wrong.”

As a result of his diagnosis, Ann says, a lot of the couple’s male friends have been tested and this has saved the lives of three of them because their cancer was found in time for them to be successfully treated.

“John’s cancer has definitely brought us closer,” she says. “We’ve become heavily involved in organising fundraising events and John has developed a new skill – public speaking. He talks to men’s groups on the island about prostate cancer. You could say it’s given him a new lease of life.”

CASE STUDY 02

Specialist helpline

“Men are often so anxious to protect their loved ones, they can’t discuss their biggest fears with them and so they turn to us,” says Meg Burgess, 44, a specialist nurse with Prostate Cancer UK’s charity helpline.

“When someone has just been diagnosed, we become a regular point of contact for them and are there for them through those first few weeks when they’re on an emotional rollercoaster.

“On hearing the diagnosis, men often go into shock and can’t absorb all the information they’re given. They feel overwhelmed. We have the time to go into detail about what the diagnosis means and what the various treatment options entail. The longer calls we take – sometimes up to an hour – are from men newly diagnosed who want to make sense of it all.

“After treatment there can be sexual problems. One of the advantages of the helpline is that many men find it easier to discuss issues like this over the phone. We can tell them about treatments that might help such as vacuum pumps, Viagra and injections.

“Not all calls come from men with the disease. A lot are from men anxious to know the risk factors or they have heard about the PSA (prostate-specific antigen) test and want to know what it involves, and whether they’re eligible.

“Our role is to provide the most up-to-date unbiased information about prostate cancer. The great thing about this job is we know we help make a difference because of the feedback we get.”

CONTACT FILE

Prostate Cancer UK has an online community, where more than 6,000 men share their experiences, in addition to a helpline manned by specialist nurses on 0800 074 8383.

Prostate Cancer Support Federation is an organisation of patient-led support groups across the UK; talk to a fellow patient or find a group in your area by ringing their helpline on 0845 601766.

The Prostate Brachytherapy Advisory Group www.prostatebrachytherapyinfo.net connects you to an advice website and shows videos of men who have had low dose-rate brachytherapy for localised disease.

The Sexual Advice Association www.sda.uk.net helpline on 020 7486 7262 provides fact sheets about treatments, such as vacuum pumps and injections, as well as the booklet Sex and the Prostate. 

The Bladder and Bowel Foundation provides information on how to cope with incontinence problems and has produced a fact sheet on bladder control after prostate surgery; their helpline is 0845 3450165.

Macmillan Cancer Support has launched an online guide Benefits Made Clear and has financial advisers available to assist you; log on to www.macmillan.org.uk or call the helpline on 0808 8080000.