Hello everyone, I have been on this journey for about one year, mine started like a few others I have read, bleeding and treated as an infection until I pasted what I describe as tomato sauce. I had the rigid Cystoscopy and found the tumour; looking similar to an water anemone,
I had the tumour removed but they had to break it down to get it all out, this in its self worried me because my father once described cancer as fungi and once its cut or damaged it released spores into the body. so not a good place to be or start from. I have for the most part blocked his analogy, Dad dies in 2013 from Meloma cancer - his cancer had spread all over his body and was untreatable because he would not attend a GP and had not been seen by a Physician for 30 years, so an unusual case, driven by his mental illness.
so having this negative view in the backdrop of my mind I have remained positive on the whole. However, my experience has been unlike many, from what I have read from this site.
I started the initial six courses of BCG but could only tolerate 3 of the first 6, I was admitted with a physical reaction to the BCG with bleeding and high temperature and was in hospital for a week, the remainder of the course was stopped and a month or so later restarted a course of three which was problematic from the first session, the second dose resulted with me bleeding heavily and multiple infections and feeling generally low, tired and worried. The third infusion was delayed due to the bleeding by a week, on having the third infusion I could not hold it for two hours, and hour by hour felt worse resulting in the pain and discomfort also increasing hour by hour until I was taken to the nearest hospital, barely able to walk and having pain in waves of severe pain, I was unable to sit,stand, or lay and was begging the A&E nurse to give me pain relief by now unbale to stand, kneeling on the floor head on the bed begging for pain relief, I was given two shots of morphine which stopped the pain, I was discharged at 3am.
the following working day I was seen by my GP who took urine samples which had visible blood and high levels indicating an infection, I was put on the equivalent of 2 months of antibiotic's.
The GP stated he would write to my consultant, fortunately I also took it upon my self to write and give a patient experience of the treatment and symptom's, just as well as my GP didn't write, I chased the medical secretary of my consultant and got an urgent consultation and an urgent re admission for the Cystoscopy and Uretha investigation.
I had this procedure done today - there was a soft stricture which had reduced my flow and direction no visible tumour but a number of very small red patches which have been biopsied and now a wait while they grow the cultures.
I cannot really complain about my GP he is a very busy man, the care and treatment I have received from the consultant to the cleaners has been caring and thorough.
I am worried what this means and how this will pan out, I did intiatlly request that I have my bladder removed as the safest long term treatment but being 46 at diagnosis, my intimacy is still quite important, but I do have a feeling that this will be the end treatment,
