Gerry's Story

“I went to the GP surgery for a cold that was lingering a little. My doctor said to me ‘We don’t see you too often, let’s get a PSA test done while you’re here.’

I had never heard of it. I didn’t know what a PSA test was or even if I’m honest what a prostate was either. 

“The PSA test was just a simple blood test. My PSA was higher than ideal, so my doctor wanted to monitor it for several months. I went in every month to get checked.

“A year later I had another test and my PSA had gone up again. I was sent to the rapid access clinic in Galway. I had a biopsy which was all clear. The PSA was high, but given the clear biopsy, my medical team were satisfied at that point. I had to go back for a further check up six months later.

“I returned in six months for a second biopsy.  I was told my PSA was 20 and I had a Gleason Score of 8, which indicates an aggressive and fast-growing form of prostate cancer. I had a talk with the doctor and he basically said very bluntly that I had cancer and these were my options. Our conversation lasted less than five minutes, and I was aware of the queue of 30 or 40 men behind me.

“A kind nurse then sat me down with an Irish Cancer Society booklet and made a general apology about the bedside manner of consultants. She told me to take my time and to go home, discuss with my family and decide what treatment I want to go for. 

“The clinic is a four hour drive away which meant an early start or an overnight stay every time I went. 

“I opted for the prostate surgery to remove the prostate completely. I was back and forth to Galway 13 times for blood tests and bone scans between December and April when I had the surgery, preparing for the operation. 

“Nobody warns you about the incontinence side of things. It was quite a shock. I think it was mentioned but it felt like it was brushed under the carpet a little, like, as if they may be scared men may not go through with things if they knew. Or maybe even doctors are a bit embarrassed to talk about that side of things. 

“It took around nine or 10 months after the op to get over the incontinence fully but I know for some men it can last a lifetime after cancer treatment.  It took three months or so for it to stop being really difficult to deal with. 

“Straight after the surgery and for the first few months it was crazy. On the first night, I wore the pads that were in stock locally but they weren’t right for where I was at. I woke up at 4am completely soaked, and in shock about what had happened. Things didn’t get better. 

“I would get up from sitting, and I’d wet myself. I would cough or laugh and the same. It was very frustrating and such unfamiliar territory. I just had to knuckle down and do the workouts and pelvic floor exercises and have a belief that things would get better. 

“At the time, I used to make any excuse not to leave the house, and I honestly rarely left the house for four months. 

“I didn’t even go to visit family. After my operation I had people call to the house to see me and how I was doing, and they’d offer for me to have lunch at theirs and I’d say, ‘I’m not going anywhere’. 

“I felt embarrassed about it, even though I know I shouldn’t have. I think the lack of awareness about it is part of that. That nobody knows this is a side-effect of prostate cancer surgery, and that’s hard.

“I couldn’t believe it was happening. After a month I began looking for an operation to stop the leak, but luckily all I really needed was time, patience and the exercises they gave me. 

“I don’t know if I would have felt different about going out and about if there were sanitary bins in public for me, maybe it would have. I couldn’t even conceive of it at the time. Now I think about it, maybe it would have. I would have felt I have options to get rid of my pads and change them. At the least, having sanitary bins for men in toilets will lead to more people being aware of prostate cancer and that incontinence can be a side-effect for some men.

“I still need to use a pad now, but just to cover myself, and don’t need to change them too often. Having a sanitary bin in the toilet would be much more convenient for sure, so you don’t have to worry about nipping out of the loo with it and someone seeing. 

“Leaks are a very difficult thing for a man to come to terms with, but as I say to everyone, it’s still worth it, because we are still here. 

“My neighbour passed away very recently from prostate cancer, he was only 55, it’s so sad. 

“Whatever you have, you have to face it, and the earlier the better, so you can get on with tackling it. Hopefully getting sanitary bins for men in public will help men feel like they can get out and about more, but also remind men to get tested sooner too.”