I have a busy, active life, I wear what I like, no longer self -conscious about my bag. In 2017 I even did a tandem skydive with the Red Devils to raise money for Bladder Cancer awareness. Life is good.
My name is Sue, I started my bladder cancer journey back in the summer of 2013, although I didn’t realize that was what it was then, I had a few little shows of blood after weeing, but, when I mentioned it to my doctor she said it was probably just a bladder stone, maybe it was. That December I had blood in my urine, the GP gave me antibiotics, and I thought no more about it, until it happened again in May 204, a different GP was concerned and referred me for a cystoscopy which happened a couple of weeks later, then things moved fast, as two papilliary tumors were found. That same day I completed my pre-op tests and two weeks later went to have the tumors removed in a process called Transurethral Resection of Bladder Tumours or TURBT for short. At that point no-one had actually mentioned the word cancer; however, the results of the biopsy taken during the operation showed that I had Stage 1 Grade 3 with carcinoma in situ, or CIS for short, now things got serious.
I had a CT scan with contrast fluid, followed by a meeting with my urologist, the good news was that my cancer was no-invasive, it hadn’t entered the bladder wall, the bad news was that it was aggressive. The urologist explained that during the TURBT they had put a chemotherapy drug called Mitomycin directly into the bladder but that was just a stop gap, and he suggested that I should have BCG treatment. This is the same BCG that is used as a vaccine against TB. I needed six-weekly treatments, but at that time there was a worldwide shortage of BCG, so I ended up having three weeks, then a gap of two weeks before the last three were administered. It is put directly into the bladder and kept there for, if you can, two hours, not easy. As it is alive ‘vaccine’ you have to take special precautions when using the toilet for six hours after and weeing can be really sting and painful, I just hoped it was worth it, especially in weeks two when I had horrid flu-like symptoms for a few hours.
Before all this, in May, I had heard the wonderful news that our daughter was expecting her first baby, I was determined to do whatever I had to in order to beat my cancer, James was born on September 30th. Fortunately, I had already decided that I was going to retire at the end of the year, just before my 65th birthday, this meant that I was really busy at work getting things into place for whoever took over from me, plus my Mother-in-law was ill, and died at the end of October, so I didn’t have much time to brood. We also mad a few visits north to see baby James, and they came to us for his first Christmas.
January 2015 saw another CT scan and a biopsy to see if the BCG had worked, and then the bad news that it hadn’t, not what I wanted to hear. My options were radiotherapy or a radical cystectomy, decisions, decisions! At this point I found an online support group which was a great help and I finally decided on a Radical Cystectomy, having bladder, uterus, ovaries and lymph nodes removed. There are different types of urinary diversions, I decided to go for a stoma and bag, it seemed the simplest option given my age. This was decided in February, and there followed another CT scan and a PET scan, the operation was scheduled for April 23rd. I had had to change from Salisbury hospital to Southampton General, our areas center of excellence for the operation. I was told, after my pre-op tests that as I was fit and healthy, apart from having BC, so I would be fast-tracked so that I should be home 5 or 6 days after the operation. We decided to pay a visit to our daughter and grandson before the operation and had a lovely few days early in April. I came back to find that my operation had been brought forward to April 14th!
The operation went well, I was out of bed the next day in the High Dependency Unit, and then transferred to a small ward. It was all a bit of a blur really, but I was home five days after the operation. I was so glad my husband was there, he was so patient, I had very little appetite to begin with, eggs, yogurt, soup, but day by day I felt a bit stronger, I had to walk as much as I could, this was to get my bowels working as the stoma is made from a piece of bowel, and they don’t like the disturbance! I managed to change my bags, there were some leaks but nothing too awful. We solved the problem of me being unable to stand in the bath to shower by wedging my exercise ball under the shower so that I could sit on it. At four weeks post op I had a bad day, I think I was stir crazy, my hubby said we were going out for a drive. We drove through the New Forest and ended up at some tearooms, we had a tea and cake, and afterward, I actually walked around the village and looked in a gift shop, it was a turning point, I had re-joined the human race.
Ten weeks post op we went to the Lake District for a week’s holiday with our daughter, son-in-law, grandson and son, I still had to be careful not to overdo things but I felt good, I was still conscious of my bag and made sure to wear elasticated trousers. I am now approaching four years since by RC, I have another grandson, I have a busy, active life, I wear what I like, no longer self -conscious about my bag. In 2017 I even did a tandem skydive with the Red Devils to raise money for Bladder Cancer awareness. Life is good.