Claude’s Story

[Nightingale]

Like most people, my journey starts with denial. With a slightly red tint in my urine, I shrugged it off as maybe blood from bruising after a nasty fall at work. After a month, it happened again, slowly increasing in frequency as time moved on – sometimes barely visible, and wrote it off as being tired or bad lighting, to sometimes actually seeing sizable clots, and a burning sensation.

I finally decided to go to the after-hours clinic since I didn’t have a family doctor. After a quick checkup, I was given antibiotics for a possible UTI. After 2 weeks, still no improvements and then the tests started…an x-ray here, an ultrasound there with no indication of anything. Finally, the doctor sent me for a pelvic ultrasound. The technician couldn’t say anything, but said that I could wait for the results in the ER…I guess she knew.  After 4 hours of waiting, I finally got the news – Cancer! I was in shock a bit, and was told to wait for the urologist, luckily for me, he was new in town, and scheduled me for a TURB 2 days later. How do I let my family know? I was still in shock, and it didn’t sink in yet, I think that helped with letting my family know.

Going in was nerve racking…I had never had surgery before, and didn’t know what to expect. Getting prepped, the nurse made me feel at ease, which made it easier as time for surgery got nearer. Finally the OR nurse wheeled me in, made me feel at ease, and then it was time to take a nap.  The last thing I heard was the anesthesiologist whispering in my ear, “Quit smoking”.

I’m unsure at how long the procedure took, but my first words as I came to in the recovery room were, “I really have to pee”…not knowing that I had a catheter. Groggily, I was released and went home. Living alone, but with family living nearby helped, but being an independent person, I managed most tasks myself. It was a long week; I was used to always being on the move, going for walks, going to the gym, and working, but now reduced to sitting most of the day, carrying what I called my “pee purse”.

Finally after a week, the catheter came out…That was a bit nerve-wracking since I didn’t know what to expect. After the week, I returned to work with quite a bit of difficulty, not workwise but red tape, and needing a form filled out from the Urologist…which being new in town, he didn’t have an office, so hunting him down was fun. After a 2nd week, I managed to start work again. Once again, I was lucky that my co-workers filled in for me, which was a relief going back.

Being someone who’s an open book, you can ask me a question, and I won’t hold back on my answer.  The funniest was when asked how the incision was healing, to which I replied, “No incision, just one way in”. If others asked what they did during surgery, I would answer my best.

After about 2 months, and meeting with the Urologist, he scheduled a 2nd TURB to make sure he got everything, but did start mentioning that if I want a long life, the bladder would have to come out….This scared me, and I decided that if worse comes to worse, I would consider it.  The 2nd TURB went well, I wasn’t as nervous and knew what to expect. What was tough was 2 days afterwards, needing to go for another test at the hospital, I felt strange walking in with my “pee purse”, but then remembered what someone at work told me, “When it comes to hospitals, leave your pride at the door, and pick it up on the way out”.  Luckily for me, this time when I returned to work, I knew what the Urologist needed to fill out, he mentioned that he left out certain info the other time since it wasn’t anyone’s business what was going on.

By this time, I was starting my quest to quit smoking.  I had been a smoker for about 25 years. Quitting was easier than I thought.  I tried the e-cigarettes, and I would alternate both during the day, then after a few weeks, I managed a week, but starting BCG, I had a real cigarette…was very disgusting, and that was that, been on the e-cig since then, and am slowly getting away from that as well.

BCG treatments brought nervousness because once again, I didn’t know what to expect.  It wasn’t as bad as I was imagining, I was able to walk home afterwards, giving it time to “swoosh” around.

When it came time to void the first time, it was a tad painful, but not so bad. My side effects were mild after the 1st treatment. When they mentioned joint pain, I figured it would be around the pelvic area, not all over my body. I felt like I had been hit by a truck, but that subsided within a day. The following 5 treatments didn’t bring the joint pain, but urgency the day after treatment, and by urgency I mean urgency. I would just get that feeling out of the blue, and was lucky to make it to the washroom. Luckily I found a sign it was coming – a slight pain on my left side meant “Start getting to the washroom…it’s a comin’.”

Over the following months, everything was back to normal. I returned to the gym, and work was going well. The urologist mentioned getting rid of that bladder of mine, yet my cystoscopies were coming up clear. Speaking of cystoscopies, that first time made me nervous, but afterwards, it became the new norm. In fact, I preferred the scopes to BCG…It helps when the medical staff keeps reassuring you.

Everything was looking good, but I found myself getting tired more easily, and I wrote it off to stress at work. I would get home completely drained, and sore. Over the months, it was getting worse. Constant visits to the chiro for what felt like sciatica, visits to my family doctor, yet nothing was being found. I would dread stairs at work, and at times, I would get home after work almost in tears from the pain. Finally my chiropractor noticed swelling and told me to get to the ER.

That trip flagged my family doctor to order more tests, and that’s when they discovered a tumour in my left leg. The biopsy came back as metastatic bladder cancer. To protect the femur since there was damage to it, surgery was required to insert a pin to stabilize it. After 5 days in the hospital, I was finally released and stayed with my parents while I waited for recovery. I half expected a week or two of sitting/sleeping on a recliner, while waiting to start radiation treatment, but with treatments, worrying parents, lack of mobility, and now chemo treatments, I ended up staying with my parents for nearly 4 months.  I guess no matter how old I am, I’ll always be my mother’s baby.

As of now, I’ve completed 12 chemo treatments, and am waiting on more tests to hear some good news. I am working on the lymphodema that has decided to make my mobility a pain in the butt.

I guess all this to say that I wish I would have caught this sooner, but in the end, I’m fortunate to have the support of family and friends, a great medical team working on my part.

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