Jody’s Story

[Nightingale]

I had a few bladder infections before, but this time I felt something was different. My urine was pink so I knew I had blood in it, which I had before. But this time the symptoms would stop and start again. I knew that if I had an infection, it would not come and go like that so I made an appointment to see my GP. I told him I felt it was “weird” this time. He said he would send me for an ultrasound just to make sure everything was okay. I got in within a few days and received the call to tell me I had a tumor in my bladder and it looked like cancer. I now had a lot of blood in my urine and with the ultrasound results in hand, it was suggested that I go to the Rockyview emergency. I did and waited for several hours. They were all too busy to see me so they told me to go home and a urologist would call me. The next morning I received a call from the urologist and he told me he didn’t even need to see me. He had booked me for surgery to have it removed a week later.
I was told it was likely a low grade cancer and they would just remove it in hopes that it doesn’t return. Even after the surgery to remove it, I was told not to worry as it was likely low grade and they were not too concerned.  If it was to come back, they would “lop it off”. It was early evening, several weeks later when my urologist called me to let me know the pathology results were back and the cancer was very aggressive and not at all what they thought it was. He scheduled a cystoscopy in 3 months. I was clear on my three month checkup but on my 6 month cystoscopy they found 3 tumors. I went to the Tom Baker Cancer Center and was told that if the cancer metastasizes, they probably could make me comfortable for about 5 years.
I had never known anyone to have bladder cancer and immediately thought that I would not survive. I was in shock. It all happened so fast. All my friends and family kept telling me to have a positive attitude but I didn’t know how. I tried to research bladder cancer on the internet but there was almost no information about women with bladder cancer, which was frustrating and truly left me feeling alone. There was no bladder cancer support in Calgary yet. I had my tumors removed again and was waiting for my pathology when I got a call that my urologist had passed away and my file was being sent to another urologist.  My new urologist called and told me to come in after hours that day with my husband and he would take all night if he had to, to answer my questions and walk me through my options. We met that night and he was amazing. His empathy, positive attitude and honesty were more than we could have asked for. I had the option of taking only a part of my bladder and saving the rest. He explained that the cancer would have a chance of coming back. After what I had been told at the Tom Baker, that was not an option for me. He recommended a radical cystectomy. He also discussed the possibility of a neo bladder because I was young and healthy enough. It would be a much longer surgery but I would not have a bag. We talked about a lot of things and the best thing I did was to have my husband by my side. We left feeling numb and still in shock that this was happening to us. We had long conversations and after a lot of deliberations I decided to go with the neobladder. The thought of a bag and changing/emptying it was strange to me. I didn’t like the thought of having a bag hanging off my bed and how it would affect my sleep. For me, I felt I would feel “normal” as no one would know that I had a neobladder inside of me. The decision was made. I met with my urologist and gave him my decision. I remember him saying “I don’t want you to regret your decision”. I told him I wouldn’t. I just needed him to save my life. Within a few weeks I had this major surgery and I did very well. I was in the hospital for 2 weeks and after 6 weeks I had returned to work on reduced hours. I did not have to go through any chemotherapy treatments so I feel extremely lucky for that. The neo bladder isn’t perfect. There are pro’s and con’s. I had pretty severe incontinence for the first while. After things healed, it did improve, but I had to wear protection. I was referred to another urologist who specializes in incontinence. He tried everything that he could to help but nothing seemed to work. In the end I had a trans-vaginal tape procedure done and it changed my life!! I still wear light protection but barely need it anymore!

Where am I today;
I am working full time, enjoying my life. I do live in fear of getting cancer again. I notice every little change to my health and my body. It’s been 8 years now and it does get better as time goes on. I am grateful for the years I have been blessed with and for getting such exceptional care here in Alberta. I still don’t regret my decision.
I am fortunate to have the neobladder as no one knows I have it, unless I tell them. I have to empty my bladder several times a day and a few times through the night. I don’t have the feeling that a bladder does to let me know when it is full, but I do get a feeling that I recognise now. I have to use stomach muscles to empty the bladder. I have quickly learned and adapted to finding washrooms anywhere I go. That is the first thing I think of when I am booking a trip or going somewhere new. I sit in the aisle seat on an airplane. I have to be careful if I am booking a tour etc. I recently had to turn down a trip to China as they have different washrooms and I am unable to use them as I have to be in a certain position to empty my bladder. I am always the one who stops at the restroom before going for lunch or into a meeting.
I am a survivor and every day is a gift. I am grateful I am able to continue living my life. So many others don’t have that chance. When I think about it, it is such a small price to pay.
Words of wisdom:
Don’t rely on the information you get on the internet and stories you hear from other people. Everybody is different and the type of cancer is as well. Talk to your doctor and for support and great information contact Bladder Cancer Canada. There are a lot of survivors out there, I am one of them. It’s not the end; it’s just a journey.

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