We are very grateful to everyone who has shared their story with us on this website. We know that many people find reading the story of other patients very helpful when trying to make sense of their diagnosis or cancer journey. We also know that these stories can be very powerful in helping to raise awareness of bladder cancer and highlight the urgent need for new treatments, research and support for those with bladdercancer.
If you would like to tell your story please do get in touch with us by email at firstname.lastname@example.org
We can arrange for Sara Jane, our Patient Programme Officer, to get in touch to help you tell your story if that would be helpful, and we also have a 'hints and tips' sheet to give you more ideas about what to write.
My story is a little bit different because I was diagnosed with bladder cancer at a younger age than most, just before my 41st birthday, but my problems began when I was only 15. I started to get very a very bad burning pain when I went to the toilet. As a young male teenager this is something you do not want to talk to your parents about, but I am also profoundly deaf and so can´t hear the radio or TV, and communication is difficult for me so I wasn´t aware of cancer health warnings and the signs to look for.I have always been very healthy and have never smoked but I have always been into BMXing and my bedroom was like a workshop because I spent all my spare time when I was not on my bike working with rubber, paints, plastics and petrochemicals. When I wasn´t painting or working on my bike or riding my bike I was competing in major competitions and I was ranked 6th in the BMX world in 1996.
When I was 29 I remember drinking beer with my friends at a nightclub and having a terrible burning pain that was so bad I had to run to the toilet. Then a few weeks later I was at work when I had the first time that I peed blood. I still didn´t say to my family or friends but my mum saw blood in my underwear and made me go to the doctors. But of course my pee was clear but the doctor suggested I go to the Ulster Hospital where I met Mr Best. Mr Best found a small polyp growth and this was removed. I stayed in hospital for a week. Soon afterwards I went to England to compete in the National championships where I won 1st place even though I wasn´t that fit after being in hospital. People say I am mad!
I continued competing for another 3 years with no problems and came 6th again in Germany in the World BMX Freestyle competition then 3rd in France in the BMX Flatland Championships and 1st in the UK championships in 2002 and 2003.In 2003, 3 years after my last treatment the problem came back, I was so upset, it seemed like a 3 year cycle.
I worked as a Graphic designer in a sign writing company in Northern Ireland but was struggling to live and couldn´t afford to buy a house, as a profoundly deaf person I was always paid minimum wage. So when my parents said they were retiring to South Africa (where I had grown up before) I decided to go with them and see if I could make a new and better life there.
I found a job in a partnership in a sign
writing company. The electricity is always being cut off in SA and my partner
had borrowed generators which he ran in the office. The smell was terrible and
I complained but my business partner insisted that he run them inside.
In March 2006 at a pool party I met Messalina. It´s the best thing that has ever happened to me. She is the love of my life. October 2010 we married. My wife is wonderful and we support each other so much.In September 2011, I started to feel pain again. My parents paid for me to go to the doctor who kept saying that it was just a urinary infection and giving me antibiotics, but I knew and kept insisting that they check again. When they finally diagnosed a small growth my parents booked a flight straight back to NI. On 25th November I saw Mr Best and the growth was removed. First they told me that it was all clear but again I didn´t feel right and was still in a lot of pain so I was sent for a CT scan and that was when I was given the bad news that it was cancer. That was on 23rd December 2011.
On 14th February 2012 I had a neo bladder operation at Belfast City Hospital where I stayed for 8 weeks. The operation was successful and I was so pleased that chemotherapy was not needed and that I didn´t have a bag on the outside. I am alive and back to normal thank you God! I have to thank the great team Mr Best and my consultant Mr Hagan plus the fantastic team on the ward at the Ulster Hospital.
I am 44 years old and live in Belfast. I was given clear on 20th December 2012. I am still riding my BMX where I am involved (Ramp Rage Team) in BMX demos.
There are some changes, I feel great most of the time but I have lost a lot of weight from 11 stone to 9 half stone and have had problems with a lot of infections because of fruit drinks and my diet. I think that sometimes the nurses are inexperienced and do not always communicate with me properly so I have had to learn for myself what I can and can´t take. For example I can´t take any caffeine or eat spicy hot dishes which I really miss. I also can´t drink alcohol.
My sister found out about ABC and told me about the charity. She has raised money for them by doing a lot of endurance events from trail Marathons to 100mile bike rides.I am sure that using chemicals and paints while working on my bike from a young age, later at university where I studied Graphic design (I used 3M spray for gluing photos, the other students used to complain that I used too much, I told them that smoking was a bad habit and just the same) and then in my job as a sign writer and that maybe even the exposure to the fumes whilst the generators were being run have contributed to me being diagnosed with bladder cancer at such a young age, especially because I am so fit and have such a healthy life.
My advice to everyone else is that no matter how young you are always tell someone if you are having problems with your peeing and if there is blood and if you have to work with petrochemicals follow the correct safety advice!!