Living with bladder cancer

On a cool sunny mid-November morning in 2019, my wife Bev and I sat unsuspectingly in my urologist’s office. We had been told twice in the last four months that the red patches on my bladder wall were infection or inflammation and not to worry. The patches had been surgically removed a couple of weeks earlier and we were called in to get the oncology results. My urologist sat down and said, “Peter, your results came back as High Grade Papillary Urothelial Carcinoma, and you will need to begin treatment as soon as you can.” This aggressive cancer has a 61 percent one-year recurrence rate and a 45 percent five-year progression rate. Above: the author (submitted)

We sat there stunned.

Fast forward to today. I am almost two years into my three years plus treatment regimen. Covid has slowed things down somewhat, but I am on a reasonable path. I have had one small reoccurrence. The journey has had its moments – numerous cystoscopies and CT scans, UT infections, epididymitis, urethra blockages, several hospital emerg visits and cumulative treatment side effects of fatigue, body aches and reactive arthritis. My treatments are done in sets of once a week for three weeks. Those weeks are not fun. I resume treatments again in October. Best news, I still have my bladder and it usually works well enough.

A cancer journey is an emotional one. There are times you need to cry and times when laughter is good medicine. I had a treatment at the end of December 2019 that went very badly. I was in intense burning pain with full body chills. When the cancer drug is instilled into my bladder I must “hold it” for two hours. I couldn’t. The ill effects lasted most of the week.

So going in for the next week’s treatment I was honestly fearful. Was last week’s experience the new norm? Hour One went very well and Hour Two was rolling along. I was almost euphoric. So much so that I put my thoughts into a poem on the spot. It’s a little naughty so I beg forgiveness.

Laughter is good medicine.  I also learned early to check all bashfulness at the door.

From the beginning I promised myself that I would not lose time on self pity, “why me?” or fear of what “might” happen. My wife keeps me positive, and an inherited stubbornness keeps me determined. My treatments have shown to be effective and early detection was key. My lifestyle has changed a bit as I have had to slow down. Getting enough good rest is not always easy as my nights are interrupted with trips to the loo.  Maintaining a healthy diet is important as is regular exercise. All is a work in progress.

Bladder cancer is the fifth most common cancer in Canada. Three quarters of all bladder cancer patients are men. Although bladder cancer is the most expensive cancer to treat it is twelfth in dollars for research in Canada. About 12,000 Canadians will be diagnosed with this cancer this year and about 80,000 Canadians are presently survivors. Blood in the urine is the most common symptom and this was true for me. Smoking is the most common risk factor and I have never smoked.

Bladder Cancer Canada

 When I was diagnosed, I was totally unaware and uninformed of what I had and what was to come. My urologist gave me a couple of pamphlets but interaction with him was very limited. Our system is what it is. I had no family doctor to bounce things off. I searched the internet and stumbled upon some dark and frightening places. My perspective was not healthy.

Image: Bladder Cancer Canada

 It was then I came across Bladder Cancer Canada (BCC). BCC, a Canadian charity, was founded 12 years ago by two men, both bladder cancer survivors. It is dedicated to providing patient support, increasing awareness and funding research. It was on the BCC website that I found educational webinars delivered in plain language by professionals. I read with a better understanding their patient guidebooks that outlined treatments and options. On the forum I conversed with people who were further in their journey and gained from their experience. I began to prepare better questions to ask.  I felt a bond and became more hopeful.

How you can help people like me

BCC is almost entirely self funded. Charity Intelligence Canada has given BCC a four-star rating for use of funds, reporting and transparency. Only four Canadian cancer charities received this highest ranking. Almost two thirds of the BCC annual budget comes from their national Awareness 5k Walk held in major Canadian cities every September. Last year Covid-19 cancelled these walks and BCC reached out asking for virtual participation.

It was time for me to help the people who helped me.

Bev and I have had years of fundraising experience and for a decade we co-ordinated Barry’s Bay’s annual Terry Fox Run. We have also been very active executive members of the Wilno Heritage Society and organized annual fundraising events.

I’m 68 years old and have always been fit and active, played team sports, run marathons, and finished numerous biathlons, triathlons, and Ironman competitions. 

I decided to use this experience to raise funds for BCC. So, last September I pledged to do a 50k bicycle ride followed by the virtual 5k walk. I was not feeling the best, but I was determined and just needed to push.

Community support was astounding. Friends and family donated over $11,000 in my name. I was in the Top Ten in Canada in funds raised and had 170 sponsors. This is remarkable for a community the size of the Madawaska Valley, something we can be proud of. Overall BCC was able to raise about 75 percent of their 600-thousand-dollar goal for 2020.

So, it’s 2021 and September is almost upon us. Covid has once again forced the BCC Awareness Walk to be a virtual one. This year I will cycle 75k, Barry’s Bay to about Latchford Bridge and back on September 25. Bev and I will walk 5k on the 26th.

Please consider supporting this initiative. You can do so online at https://bladdercancercanada.org/en/

Just tap “Bladder Cancer Walk” when prompted, tap “Donate”, enter my name as “Individual” and fill in the donation form. You can also donate directly to Bev or myself and we will get your tax receipt for you.

In so doing you will be helping people just like me. 

Thank you for your time and support. Bladder cancer can be beaten. Just watch us! And remember if you see red, even just one time, see a doctor.

BCC_See_Red_Poster
Image: Bladder Cancer Canada

4 Comments

  1. Pingback: Living with bladder cancer - Madawaska Valley Current - Nigeria Cancer Blog

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