Gary's Story

[Nightingale]

My name is Gary. I am a 58 year old male first diagnosed when I was 41 years of age.
I had recently stopped smoking.  I had smoked for 25 years and had wanted to quit for several years prior to diagnosis.

I had horrible kidney pain which was first thought to be kidney stones. The initial ultra sound revealed a bladder tumour which was not disclosed at the time.

In reflection now, the waiting and not knowing, was the most painful emotionally.
I was referred to an urologist in Red Deer. I was informed that I had a bladder tumour and that the most common cause of this was smoking, and happened predominantly in males.

I was told that the solution was to have surgery to remove the tumour that would be followed by regular cystoscopy checkups. The surgery went well and “Doctor Google” seemed to educate me as to the procedure itself.
The cystoscopies tended to be a tad humiliating, but over time we adjust.  I did not feel that uncomfortable other than the worry the night before. The flashbacks were mostly around the discovery of another tumour and seeing it on the TV monitor.

The 3 month intervals soon graduated to 6 month intervals and I was finally in the one year club! The possibility of recurrence had not even crossed my mind. I was enjoying a smoke free lifestyle.

Fast forwarding to 2013, my annual checkup revealed another tumour.
This was most disturbing to me.  The questions of, “Why?” “How?”, and “What’s going on?” arose. I reached out as well looking for a support group.  However, I could not find anything.

The answer from my urologist was that we don’t know why recurrence happens.
It was onward again into surgery followed by (as my urologist referred to) you’ve been busted, so back to 3 month checkups. Two years passed until 2015, when another two tumours appeared. I left the Out Patient department that day discouraged and angry. Why me?

The emotional roller coaster is very real, the lack of support or people to talk to is very real as well. The Bladder Cancer Canada forum was of some help with encouraging stories. However, for the most part, this is a disease that we suffer with alone and in silence.

After the surgery in 2015, I was approved for 6 weeks of BCG treatment.
My hope is revitalized with this relatively new discovery. My side effects were minimal.
I relocated to Campbell River, British Columbia from Red Deer. I was referred to the North Island urology clinic in Courtenay.

My new urologist is fantastic. My cystos are performed at the hospital in Comox where they have upbeat music playing in the waiting room. He has a large screen TV facing you while he explores your bladder and explains everything that he is looking at including air bubbles. The nurses are wonderful also.

After my first cystoscopy exam, my new urologist recommended a 3 week booster session of BCG. The BCG was administered here in Campbell River in the cancer ward at the hospital. It was a little unnerving to be in the same unit as those receiving chemotherapy.  However this was a message to me that things could be worse. The first treatment of BCG was fine but I found the second and third ones to be quite uncomfortable.  The nurse at the Campbell River hospital commented on the fact that the incidents of bladder cancer has increased dramatically particularly in women.
On December 1st I had my second cysto and it was all clear other than some red irritation from the BCG. I have been tumour free for just about 2 years now. My March cystoscopy was clear so I’m expecting to go for another 3 week session of BCG. I will know after my next consultation with my urologist.

The moral of my story is that it is a survivable disease, providing we keep on top of it. With great healthcare, and new therapies, we can have a good life. To have stories and support along the way is a welcome bonus. There is strength in numbers with us helping one another through the rough times. I hope this story helps with hope that life goes on.

[lefmike]

Hi Gary,

Thank you for posting your story, and you’re bang on, this is a journey that we must often take on our own I’m finding.  Don’t get me wrong, BCC has an awesome site, very encouraging and informative, and I’m proud to support it financially and spiritually but it does have its limits,  getting face to face meetings can be hard if you’re not in a major population center, but that is also understandable.  I found your words are so supportive and encouraging,  my story is not the least similar to yours aside from having BC.   I’m presently into my last of 3 maintenance instillations 3 months following the initial first 6.    I had my first post BCG scope in October and they had found 3-4 growths  so my first scope was not the “all-clear” we hope for and I was again frightened it was back.  They did a TURBT in late November and the  biopsy showed no cancer  so here I am, my last maintenance BCG treatment this Thursday.

Like you, I really wish there were people here in the Windsor ( Essex County) who could meet and discuss issues, but presently that is not the case.  Personally I would love to participate or even organize something but I’m a snowbird, therefore out of the country during the cold months, this year is an exception ( hopefully).  I find the BCG treatments now are much more uncomfortable than the 1st 6, the side effects, especially the flu like symptoms and headaches are a real bother, but after the 1st treatment  I’ve started taking Tylenol as soon as I get home and during the 1st  24 hours and now they are more manageable, I never would have tried that without reading it here on BCC first.   I will have a scope at the end of February and we’re praying for my first real ALL-clear.  I’ve been in touch with old friends and colleagues in the recent past and I’m amazed at the number of people who have relatives or friends who are going through or have gone through what we all are.  I’m quite encouraged by how many are long term survivors, it seems that a cure for this disease is maybe just around the corner, I’m really hoping that the studies/trials they are doing with a cold virus shows real promise and its used as a treatment down the road.

Thank you for posting your story, its so encouraging, I really enjoyed reading it.

 

Good health and all the best for the New Year.

 

Mike

[Author]

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