Living with Bladder Cancer
Tony's Story
Through our discussion with patients with urological disease we realise that one of the things a lot of people want to do when they are first diagnosed is talk to someone who has been diagnosed and treated for the same condition, and most importantly, come through it. Tony Donnelly has had bladder cancer and he is a great supporter of the work The Foundation does. Here is his story. If you have been diagnosed with bladder cancer and think that talking to Tony about his experience will help you please contact The Foundation and we will put him in touch with you.
Living with Bladder Cancer
The luckiest moment of my life came at 5 o'clock one morning when I was anchored in my yacht off the Portuguese coast: The yacht was rammed by a massive steel trawler, as it tore into the stern of the yacht I thought we were all going to drown.
My cancer symptoms first showed themselves as we were crossing the Bay of Biscay some weeks earlier: particles of dried blood showed up in my urine. The Spanish doctor and a GP I later contacted in London both said it was a urinary infection; I would have carried on believing their diagnosis had I not decided to return to the UK after the incident with the trawler.
The surgeon tried scraping out the cancer from my bladder but that wasn't successful, I guess if I'd caught it earlier it would have worked. I still remember the day he called me back: sitting in his consulting room he gave me the bad news, made worse because I thought that he had managed to rid me of this frightening disease, 'we need to remove your bladder,' he said, 'and fit you with a bag that will be taped to your side.'
Previously, when I had asked him what was the worst way it could be, he had told me about removing my bladder, but he had qualified what he said with 'but don't worry we are not going there.' Well I was there and to make matters worse he told me I only had two weeks to get the job done.
Struggling to come to terms with what he had just told me and trying to take control of my desperate situation I managed to ask the most intelligent question that I had ever asked. 'What would you do if this happened to you?' Replying immediately and honestly he said that he would call Professor Woodhouse.
I called him... His diagnosis was the same but his treatment was different: In the Royal Marsden Hospital he removed my bladder and prostate; then he made a device to replace my bladder from pieces of my gut. Sound easy enough? It took him seven hours, and I'm enormously grateful to his wife for letting him out on that Saturday in January to save my life. He told me that he would have me back on my yacht for the summer.
When the pain was bad, when I was struggling to walk and learning to pee, I have to admit that doubt set in. He would call at my bedside and say 'This is the worst it gets'. He was right, everything he told me was spot on.
The chemotherapy treatment was more difficult to cope with than the operation; it seemed to go on for ever. Just as I started to climb out of the effects of the drug they hit me with another dose. At the time I said I would never do it again, but the truth is I would.
Summer came, I slipped the lines on my yacht (she had been repaired whilst I was in the care of the Royal Marsden) and I sailed out of the Portuguese harbour. As we crossed the border between Portugal and Spain I raised a glass, toasted being alive and reflected on the debt that I owed to the Prof and all those that have helped me. That was in 2004 and I'm still sailing.
If, after my experience, I have any advice to give it's this: don't wait for things to improve, get the best medical advice on the first symptoms. There is a saying in sailing: if you have to ask whether you should reef in the sails for bad weather, then it's already too late.
If you've been diagnosed with bladder cancer and you think that talking to me will help then don't hesitate to contact me through info@theurologyfoundation.org.uk or call the office and your message and contact details will be passed to me.
By the way, my yacht is called Carpe Diem.
