Steve M’s Story

[Nightingale]

My bladder cancer journey started with a TURBT (scope surgery to remove the tumours).  Samples of the tumours were sent to pathology.  A second procedure was done to see the extent of the growths and if the cancer had gone into the muscle of the bladder.  I was diagnosed with Stage 3 muscle invasive bladder cancer.  The tumours had started to invade the fatty tissue but not progressed beyond the outside. After a CT scan, I had 4 months of chemotherapy.  When I finished the chemo treatments, I underwent a radical cystectomy (bladder removal) surgery.  My surgeon also removed my prostate and lymph nodes.

The physical journey was very taxing.  I am a runner doing about 12-15 miles a week as well as cardio exercises.  I had to stop running and reduce the cardio workout. My family was there to provide the emotional and mental support but it was hard not being able to see my grandkids while doing chemotherapy treatments as they constantly had colds.  This is a no-no for chemo patients.

I think that things followed a normal course.  I had the operation on Wednesday and was home by the following Tuesday.  I could have come home on Sunday but needed a “babysitter”.  I do wish that there is a way to tell patients how the path will be for the first few days after surgery, especially about the bowels restarting and those painful gas attacks.  It would have been helpful to know how to use a belt to prevent/reduce hernias and how to deal with the constipation from the chemo treatments. That being said, I was able to follow recommended treatment plans.

I do have some additional upcoming challenges.  I have a hernia that will need to be fixed in the future.  I did have a small blood clot in my lungs.  I am experiencing long term effects from the chemotherapy treatments.  I still am learning how to regain control of my body. I have experienced some loss in agility because of the stoma on the right side of my abdomen.  I lost some strength in my abdominal area because of the surgery.  I need to take more naps as I still have fatigue.

These are words of wisdom I’d like to pass on to others facing this surgery:

Find out your path and the actions you should take to prevent or reduce the effect of roadblocks and hurdles. The better shape you are in, the better you will survive chemo and the operations. Walking is good, feeling remorseful is bad, and the option of doing nothing is worse. You need your family and friends to survive the challenges.  I had a bonus friend in Hardy, my springer spaniel. He forced me to walk twice a day and meet people. These people supported me on the journey and Hardy kept my physical shape up as we walked 3-4 miles per day during the chemo stretch.

What is a Neobladder?
A neobladder is a “new” bladder created from a longer section of the small intestine and is inserted into the abdomen where the old bladder was. The two ureters and urethra are reconnected to this new orthopedic bladder.
Advantages of a neobladder: near normal function, no dealing with external pouches, no odors, no body image issues
Disadvantages of a neobladder: incontinence varies from person to person, may need to self-catheterize to be able to empty bladder fully, longer surgery than the ileal conduit, potential for restricted flow, post-surgery infections.

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