When I was initially diagnosed with bladder cancer, I was stunned. All I knew about cancer was that it was a horrible disease that happens to someone else, not to me. I was instantly frightened, confused and emotionally and physically sick. If you have been diagnosed with cancer, you know very well that kicked-in-the-gut feeling.
My wife, Maurine, was with me when I was diagnosed. It was a tense ride home. After we got home, I went into the bathroom and looked in the mirror. The face I saw looking back wasn't mine. It was that of a frightened, anxious, confused and overwhelmed stranger.
After some initial treatments failed, it became apparent that the only option left was to have my bladder removed. After meeting with physicians at Froedtert, I set up an appointment to have my bladder removed and replaced with what is known as a neobladder made from intestinal tissue during surgery. This is one of three possible options in replacing the bladder, although not all options are possible in every case.
The Froedtert urologists did an excellent job in explaining what to expect from a medical perspective, but we really didn't know what to expect from a patient perspective. What would things be like after surgery and going forward? What should we prepare for, and how? We learned Froedtert had a bladder cancer support group that might be helpful in answering some of these questions.
I was a 65-year-old male disdainful of support groups in general. I always considered support groups the bastion of wusses who wouldn't face up to life's problems, or simply a bunch of crybabies who wanted to whine about their lot in life. I couldn't have been more wrong.
Maurine felt pretty much the opposite of me about support groups. So before my surgery, she contacted Heidi Stark, RN, the longtime facilitator of the bladder cancer support group. After clearing it with them, Heidi gave us the numbers of two members of the group who had recently had this same surgery and had agreed to talk to me. With some reluctance I called them — and I was glad I did. Both were invaluable in providing me with information on what to expect after surgery, how to prepare for the recovery period and what to expect on a day-to-day basis. Their wives were equally helpful in giving Maurine tips on how she should prepare for helping me on my return from the hospital.
I had my surgery before attending my first support meeting, but after talking to the two men who had undergone the same surgery as I had, I felt better prepared, less frightened and more confident about what was to come. Unlike my wife, I was reluctant to attend an actual meeting, but I wanted to thank these individuals for their help and reassurance, so I went.
The meeting was not what I expected. It was helpful and upbeat. People shared practical solutions they have found to dealing with the little day-to-day issues that come up in living without a bladder, along with where they are in their cancer journey.
Occasionally, we have had speakers on various topics, including what to watch out for after surgery, chemo, emotionally coping with cancer and other related topics. As for me, I have found the less structured general discussions most valuable. I always seem to learn something new.
I strongly believe those who are recently diagnosed with bladder cancer, and are facing the possibility of having their bladder removed, have the most to gain from this group. As near as I can tell, every new patient has left the meeting feeling more upbeat and hopeful than when he or she arrived.
Our meetings seem to average about twenty to thirty people including spouses, with one or two newly diagnosed patients each month. On the first meeting I attended, about seven weeks after my surgery, we had a new patient who was facing bladder removal. I immediately wanted to do anything I could do that might possibly help him, and I knew why. His face what that of the stranger I saw in the mirror that day on the beginning of my cancer journey: It was me.
This group is not a resource for medical advice on any specific case, but it is an excellent source for practical information on living and dealing with bladder cancer and its aftermath. I would urge anyone facing bladder removal surgery to give it a try, at least once. I truly believe you will be glad you did.
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