Louis’ Story

[Nightingale]

One evening in 1993, I was working in the closet and stepped back to sit on a stool, but I missed the stool, and sat on the floor rather abruptly. I did not think about it at all as nothing hurt.  In the morning I went to the bathroom and saw blood in my pee which scared the H out of me as I had no idea what would have caused the bleeding.  I went to work as normal and called for an appointment with my family doctor. He was away so I took the next available and asked for the last appointment of the day as I did not want to miss any work.

By the afternoon I could not see any more blood coming out so I almost cancelled the appointment, but thankfully I did not.  When I saw my doctor, he was very concerned and booked an ultrasound at the Canmore Hospital.  A few days later I went for the ultrasound and they found something in my bladder.  I was given an appointment to see an urologist for further examination.  I presented myself to the Foothills hospital and went through an exam (BP etc.) with a nurse and taken to the seventh floor.  One doctor told me he would be giving me something to reduce any pain to which another doctor said I was to be put out.  No one identified themselves and everyone was masked.

I was taken to the recovery area and told that they had removed the cancer and I would have to come in for a checkup in three months (if I remember correctly).  After I went home, I started to pass blood clots in the afternoon. This happened a few times and then I had a total blockage.  I went to the Canmore hospital, and they irrigated me and left the catheter with a clip in place and sent me home.  Later that night I was back at the hospital as I had another complete blockage and they had to irrigate me again and flush the bladder.  Since they did not have the right type catheters in the Canmore hospital they had to flush the catheter by forcing fluid back in the catheter.  They were worried that I would have some urine backing up into the kidneys so I was put on antibiotics for the five days I was in the hospital.

I was given a paper on bladder cancer which really did not tell me anything.  I really was taking the whole experience very lightly. I did try to find out something about bladder cancer but even on the internet (before the WWW) there was not much information.  I discovered that the best source of information was from England. I contacted the cancer support group in Canmore but it was all women with breast cancer and they could not help at all.

I did go for the cystoscopy follow up exam and found that the procedure was the same as for the TURBT. I would be there very early and checked by the nurse then taken up to the seventh floor to see the masked men and then to the recovery area and back home with the all clear.  At least I thought it was all clear as I was so out of it that I could not remember much of what the doctor told me.  In fact for a number of visits I thought the male nurse was the doctor.

At this point in time I really was not taking bladder cancer as a threat to my life until a person that I worked with was diagnosed with an aggressive form of bladder cancer that was at an advanced stage and died a few months later.  He was going to the same doctor as I was.  After that I took bladder cancer more seriously.

I went for my annual cystoscopies. Everything was clear for nine years and then it came back.  That was a real low time for me as there was still no support around for anyone that had bladder cancer.  There were others but no one seemed to want to talk about their experiences with bladder cancer.  I did not look forward to the TURBT but what else was there?  The second TURBT was a day surgery. I went to my daughter’s place after I was released and stayed there for a while before heading back to Canmore.  After a few hours I was having problems once more with blockage in the catheter and had her take me the Rockyview emergency.  As usual the emergency was busy and I had to wait.  While waiting I tried to go to the washroom once more as I was in a lot of pain.  I passed the blockage and had my daughter take me home.  Later that night I had to go to emergency in Canmore and once more I had to be admitted for five days.  At this time my urologist suggested a treatment of Epirubicin which I did have.

I went on okay for another few years until it came back a third time and I had yet another TURBT. This time my wife pushed my urologist to admit me as an overnight patient and of course I did not get a blockage.  The hospital stay wasn’t needed for this round. I am hoping that I will not ever need to have another TURBT and experience any related problems.

Once my urologist retired, my care was taken over by his son, also an urologist. He prescribed a regime of BCG immunotherapy treatments.  I did the whole session and did not have really any major problems with the treatments except the few last ones that made me feel a bit under the weather. The last treatment I had was on May 22nd of 2014.  I have been clear since then and I hope that I will continue to be so.

I have had great support from my wife. She has helped me through it all.  If there had been a support group or easy to read information available from the beginning I am sure I would have been better prepared for this journey.  My bladder cancer journey has had its ups and downs. It is just about 25 years since the first tumour was removed and I am looking forward to a happy and healthy long lifetime.  I am also looking forward to be able to help others that are recently diagnosed with bladder cancer so some of the mysteries of this cancer can be cleared for them.

[Author]

Posts