A man with prostate cancer who is incontinent as a result of his treatments has said he wants to increase education and understanding so men have “a measure of dignity” and avoid “embarrassment” while living with the condition.
Mervyn Bryans, 69, a part-time engineer living in Belfast, was diagnosed with prostate cancer aged 57.
He explained that he has a family history of the disease, as his mother had breast cancer and his grandfather had prostate cancer, although he had no symptoms before his own diagnosis.
Mervyn underwent surgery to remove his prostate and part of his bladder to treat cancer, and this led to him developing urinary incontinence – a condition he has “no ability to control”.
However, Mervyn refuses to let urinary incontinence make him “wither away and die”, and wants to encourage men not to “bury their heads in the sand” but rather talk about it and seek advice .
“Incontinence is just one of those things you live with. some hide it, some ignore it, which is part of the problem with the prostate, specifically prostate cancer,” Mervyn said.
“The sooner you recognize you have a problem and deal with it, the easier and more beneficial it is for you down the road.
“If you ignore it and if you choose not to be proactive about it and put it in the back of your mind, it will always haunt you because it won’t go away.”
Prostate cancer usually develops slowly, so there may be no signs for many years, the NHS says.
Mervyn had no symptoms, but after multiple biopsies, he was diagnosed with the disease aged 57 and later underwent brachytherapy – a form of internal radiotherapy – before undergoing a robotic radical prostatectomy at Addenbrooke’s Hospital in Cambridge.
The surgery involved removing his prostate – a walnut-sized gland located at the base of the bladder – along with part of his bladder, and this resulted in him developing urinary incontinence – the involuntary urination.
“It’s like trying to grab the neck of a bottle, you can’t close it all the way,” explained Mervyn.
“It feels like it’s closed, but the bottle neck is still open – that’s how it feels.”
According to Prostate Cancer UK, of the more than 475,000 men living with or after prostate cancer in the UK, many will experience urinary incontinence as a side effect of treatment for the disease.
For Mervyn, he said he was “unlucky” but manages the condition by wearing pads, which come in different sizes depending on the level of protection needed, and incontinence pants.
Mervyn said he’ll probably use three to four pillows a day, and sometimes even more when he’s traveling – and they’re not cheap either.
For example, a pack of 10 pads with Level 2 (medium) absorbency, produced by TENA, costs around £5 online on various websites. Mervyn said they are not as easily accessible in person in some stores or in supermarkets.
“It’s all kinds of things that get in the way all the time,” he said.
“You can look at it and say, ‘well, I’m the age I am and it’s just life, there’s not much you can do about it, and once you reach that milestone’ … but it’s your cricket, you’ve got to play it.”
One of the other big challenges Mervyn faces is cushion disposal.
According to a new report commissioned by Prostate Cancer UK and the phs Group, of 500 men who have experienced urinary incontinence, more than a third (34%) said they had difficulty finding a toilet bowl in a public toilet to throw away used pants and incontinence pads.
For Mervyn, he said larger pads and incontinence pants are “harder to discard, especially discreetly”, in public places, and if he uses disabled toilets, people often pass judgmental looks or comments.
“Because you look like you’re relatively fine and moving around, then using a disabled toilet has an extra problem,” he said.
“If the bins were there and clearly marked as to what they were, then people would appreciate it and other people would think, ‘Oh, maybe that’s what he’s using it for.’
Mervyn has now resorted to using bags for his used pads to allow them to be disposed of more cleanly, as putting them in a bin is unsanitary and can be “embarrassing”.
Although Mervyn said people are “a bit more informed and a bit more understanding” these days, he believes the ease with which men can buy, own, transport and dispose of pillows “needs to be improved more ».
“You have the aspect of transporting them, the aspect of changing them, and then you have the aspect of disposal … so it’s a problem, especially for that, and it needs to be looked at,” he added.
Mervyn’s urinary incontinence affects his daily life. he now only wears dark trousers and no longer attends events such as rugby matches due to concerns about toilet accessibility.
Sitting and standing still isn’t usually a problem, but Mervyn said shifting from one position to another can cause “leakage”, adding: “It’s limiting in some ways that you wouldn’t normally think of.”
Traveling for Mervyn can be particularly difficult, especially by plane, as he has to choose his seat carefully to make sure he’s close to a toilet and make sure he has enough pillows with him.
However, sometimes, an unexpected problem can occur.
“They flew me to Gatwick airport and I was only there for the day,” he said.
“I had enough pillows in a bag, everything was fine and the flight was cancelled.
“I had to go to a supermarket and buy nappies and cut them up to be fine – that’s the kind of thing that can happen.
“If I hadn’t done this, I don’t know what I would have done. I mean, I’d just be wet. and what people don’t realize is that it’s a constant.”
Mervyn said he has accepted he will struggle with urinary incontinence for the rest of his life, but has open discussions about it with his family and wants to improve people’s “education and understanding”.
Mervyn is now a volunteer at the UK Prostate Cancer Center in Northern Ireland. The hub is active in raising awareness through talks with health trusts, construction companies and community groups and members regularly help out at fundraising events.
He hopes that by sharing his story, he can raise awareness of prostate cancer and male urinary incontinence so that the conditions are more widely accepted, recognized and addressed – and that’s why he’s supporting the Dispose with Dignity campaign.
Mervyn also hopes that more waste bins are installed in toilets and that pillows are more easily accessible to “stop you being embarrassed” and “give you a bit more dignity”.
“I have too much to live for to allow (prostate cancer and incontinence to) just go away and wither and die,” Mervyn said.
“Everyone has challenges in life, you have to overcome obstacles, you have to achieve certain things – it’s the nature of the beast.
“The journey you take is your own journey. No one else can take it for you.
“You have to be happy in your own skin, so dealing with the problem is the only way to do that, as opposed to letting it deal with another day because another day might not come.”
To read the full report commissioned by Prostate Cancer UK and phs Group visit: www.phs.co.uk/equality/male-incontinence/