My journey with bladder cancer started after a lovely summer holiday with my gorgeous 18 year old son in Torquey, UK. We did a lot of fun activities — kayaking, horse riding and a boat trip to go fishing in the sea. I had my period and a UTI shortly after, but thought nothing of it because of all the activities (I think I’d only had one UTI before this). But a week after coming back I had another bleed, followed by flakes of blood in my urine. In the following weeks back at work, I had really high and low temperature fluctuations, but everyone said oh, that is your menopause. Someone apologized after: She said she didn’t think it was menopause anymore and that it was probably my body telling me there was something wrong. I actually agree with that, but don’t know.
Sharing with my doctor that I had blood in my urine triggered a succession of medical appointments: blood tests, urine tests, CT scans, ultrasounds and X-rays, until on Oct. 15, when I left work early to get a cystoscopy (a procedure where a camera would be inserted through my urethra to see the bladder) — but instead of that, they showed me the scans.
Getting the diagnosis
It seemed to me that the bladder was half-full of some dark matter, but I had no idea what it was. I asked if it was cancer. They were very diplomatic and said I would need an operation so they could take a biopsy to find out what it is, and remove it if it was a tumor. I was in shock, having walked in the room with no idea that I was coming in for anything more than testing.
I had always been fairly healthy. I’d practiced meditation most of my life, on and off from the age of 19 and had spent the last 10 years teaching it. I was enjoying my life.
My thoughts went to my son, who I was so proud of. I had been a single parent since he was three years old. He’d recently achieved the highest scores in his A-levels for further maths, maths, physics and design technology, and had just started at a good university in a beautiful city, Bath, to study mechanical engineering, with the view of working in Formula One racing one day. He was loving it. This to me was the worst of it: I did not want to upset him.
The two nurses took me into a separate room to talk to me. They tried to be comforting, but it really was not working. Possibly if they had said to bring a friend along to the appointment it would have helped.
I returned home in a state of shock, not knowing what to do. I felt I had gone to a dark side and the word “cancer” that was such a big word to me before had now shrunk.
The next days
I’d expected I would be able to go to work the day after my appointment, so I called the head of the school where I work and spoke to the wonderful deputy head, whom I have a great relationship with. I said I would be in the next day, but just wanted to let them know what was going on as I didn’t want anyone to ask how the appointment went. I needed to be strong. I then spoke to the lovely head of the school and a dear friend and work colleague to say the same.
I did not realize how awful I would look in the morning after crying so much. So, I did not go in.
I called my son’s dad to say what was going on. We decided I would tell my son that they found something in the bladder and are not sure what it is, but were going to take a biopsy and check it while I am anesthetized and remove whatever it is. His dad had told me to be positive and our son will feel everything is OK. It worked. My son asked if it was a risky operation; I said no, which I believe is correct. (One in 100 can have their bladder wall punctured in error; you have to sign a piece of paper accepting this.) I had read up and taken notes on a cancer website on how to tell your child of any age about cancer, but when it came to it, I just kept it short and to the point.
We planned for my son’s dad to call my son after each time I had news, which worked well, to help give him a little support.
I decided not to tell my parents before the operation, as my mum has a failing memory and my dad has Parkinson’s, so it would have been difficult having them around and not being able to help them.
At this stage it was a mystery why I had this unusual but apparently “good” cancer, according to a nurse at the preop. The majority who are diagnosed with bladder cancer are male, over 60 years old and smoked all their lives; here I was 55 years old, and had only smoked a little in my life — 13 years ago when I separated from my son’s dad, and for about a year when I was 19 and an art student at Brighton University!
Sign up here to get the latest news, perspectives, and information about bladder cancer sent directly to your inbox. Registration is free and only takes a minute.