Side/after effects

After radiation therapy, I felt extremely weak and sleepy all the time. It also damaged my bladder, causing incontinence to return. This has been the biggest issue, in terms of quality of life. I was in the hospital three of four times because of bleeding and blood clots that clogged up the urethra. I take a bladder medication three times a day to help with that, and I use a catheter.

For weeks, the idea of using a catheter seemed impossible – the one they used at the hospital had a balloon you pumped to keep it in place. I thought to myself, how am I going to do that? Of course, I learned that the device you use for self-catheterization is more of an oversized drinking straw – there’s no knob or balloon. You push it in, through to the bladder, the bladder drains, and you pull it out. The whole process takes a few seconds.

Kegel exercises also help strengthen the bladder muscle, but not everyone fully recovers. I’m almost there. I’ve gone from catheterizing myself every day to every three days.

Impotence is another common side effect of treatment, because of damage to the nerves around the prostate. There are various treatment options, from Kegel exercises to mechanical devices like pumps to erectile dysfunction drugs.

• “Please note that hormone therapies can contribute to impotence and, depending on the therapy used, may also cause hot flashes, loss of sexual desire, nausea and diarrhea.”

The more you know

It’s important to understand these and other issues that may occur after treatment, in order to deal with them properly. Resources like this website can help you understand the different terms and issues related to your disease and treatment. As a pastor, I had seen dozens of men living through prostate cancer, but I didn’t know what things like PSA or Gleason score meant.

Knowledge provides comfort. The more you know, the more you take ownership of your disease, and the less you feel ashamed. Men are more open these days. They aren’t afraid to talk about having and surviving prostate cancer. It affects private areas of our bodies and our sexuality. If you look at our female friends going through breast cancer, they’re making their need known. Men aren’t like that, but it’s changing.

Recovery

My radiation and hormone therapies ended two years ago. Health-wise, I feel strong and carry on an active lifestyle. At my most recent follow-up, the doctor said my PSA was “perfect,” so it looks like I’m in remission. I still go for tests regularly – at first every three months, and now every six months. They haven’t said I’m cancer-free or that they don’t have to see me anymore, but I’m hopeful that day will come.

The doctors and staff have been so helpful and encouraging. As tough as it has been, some positive things have come out of my experience. I used to live my life looking for tomorrow and next week and next month. Now, I find myself appreciating each day. I relate to people better. As a pastor, I visited people who were sick all the time. Being the one in the hospital bed changed my perspective.

During my recovery, I realized that I wanted to connect with people who had walked this walk. I’d also like to be involved in helping encourage men to get their prostate checked. The reality is, if I hadn’t gone to see my doctor because of an unrelated issue, I would still be walking around today, thinking I was fine. There’s little warning for prostate cancer, so you don’t want to leave your diagnosis to chance.

Support group

There had been a support group in St. John, but there wasn’t one when I was looking for one. My doctor asked me, why don’t I start one? I didn’t know anything about the disease or the language that went with it. He assured me that it was his job to explain; my job would be to talk about the experience of having prostate cancer. That pushed me to take a action. I now lead a group that meets every month, and our e-mail list has grown to 40 people. Spouses are always welcome – in fact, a lot of the men who attend our meetings were brought in by their wife or girlfriend. And women need support too.