Steve Allen
Patient Representative, Tackle Prostate Cancer
It can be challenging at times to talk about incontinence, but support groups can help you to realise that you are not alone.
I can still vividly remember the time when I first realised that I had become totally incontinent of urine.
It was four weeks after my radical prostatectomy and two weeks after my catheter had been removed. I was in the bathroom standing naked and having a shave. I looked down and found I was standing in a small pool of urine – it was literally dripping out of me.
I had been warned that there would be a period of incontinence after the catheter was removed. Instead of staying the same or slowly improving, my incontinence had just worsened. I openly wept for the first time.
I saw my surgical colleague and the bottom line was: “Time will tell. Surgical options may be available, but probably not until after one year.” I felt desolate. I felt very alone.
I was horrified at how little most men know about how their bodies work – particularly concerning both incontinence and sexual dysfunction.
Finding support groups
The major breakthrough was when I went, with some trepidation, to my local prostate cancer support group. Would it be full of wet, whingeing old men? Nothing could have been further from the truth. I was greeted with warmth. I felt able to talk frankly about my problem.
Yes, of course, as soon as it became apparent I was a doctor I changed from being support-ed to being a support-er. But it changed my attitude to my problem. I took control of my life.
Improving patient understanding
I was horrified at how little most men know about how their bodies work – particularly concerning both incontinence and sexual dysfunction. It prompted me to become involved with charities such as Tackle Prostate Cancer and Prostate Cancer UK. I now talk freely about my problem. I do my best to improve the knowledge of patients so that they can access the best possible treatment.
I hope I have changed lives, because other patients with whom I have talked have changed mine. Other men do the same as I do. I believe peer support is vital to managing this disease. One year after my prostatectomy I had the implant of an artificial urinary sphincter. This has revolutionised my life and, 12 years later, I remain virtually totally continent.
