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.
I have not found my condition easy to talk to about, mainly because I'm a private person and very conscious of other people knowing my business. However, if this helps one other person, it's worth it.
It all started in May 2010, my wife and I decided to have a spa break - we like them! So off we went and I was feeling a little under the weather, but my job is demanding, with a lot of travelling and hotels. So thought nothing much of it until I noticed my urine was darker than normal, which I thought was maybe a touch of dehydration. It was at the spa that I started to bleed when going to the toilet and it got worse until a clot came out that was really not supposed to happen.
An appointment at the doctor could have been taken the wrong way, as he tried to convince me to take antibiotics due to a knock, but I insisted this was not the case, so he sent a sample to the hospital. It was the hospital appointment that changed my life. Having a camera put into my bladder and seeing the tumours. I must admit was amazing, to see inside myself and the tumours were like a coral reef. I asked the doctor if it was cancer, but he would not confirm or deny, so it was left to the nurse holding my hand who started to say that looks bad for can---, then stopped. The other clue was after getting dressed and being taken to a separate room with a very special nurse. She explained - without saying it was cancer that I would need an operation soon and it could be a difficult road ahead. So if I had any medical insurance, it would be worth looking to see if I was covered. Luckily, the company I work for had taken out private medical cover a few months before. I was then put in contact with a consultant at the Biddenham Manor hospital. The consultant was fantastic, blunt and to the point. He said it was cancer and needed to be sorted as soon as possible, which happened two weeks later. Also, that I would be having a lot of surgery over the next five or so years, so needed to stay fit and healthy for the long road ahead.
It's not worth trying to make it sound better because it was the worst time of my life. Going from someone, who was always there for other people to needing their help and support instead? Also finding out that life could become very short. After the operation, I had a catheter the size of a hose pipe into my bladder (OK, maybe smaller) and very sore. The consultant came by and said it was very aggressive and had to do a lot of work to remove the tumours. I was signed off for two weeks to recover and needed that time as well, because my head was everywhere with emotion and to honest, a lot of crying!
After a week I went back for the results, where I was told that my cancer was a grade three with little chance of having my bladder by Christmas. This meant I would be impotent, sterile and in my mind smell of wee all the time. However, being only 51 my best option was to have a new bladder made from my bowel or other parts - not sure now. The other option was a bag!! As far as I was concerned both options were crap, but I don't think they understood when I told them ‘that's not me and it won't happen'.
An interesting point here is, the waiting list at the local hospital was about eight weeks, I was told that my bladder was about one month from being punctured by the cancer, which would automatically mean my bladder and prostate would have to be removed.
And so my life with bladder cancer started. After the operation, I started a six week course of BCG treatment with a catheter and solution directly into my bladder. The first one my wife attended so she could share the pain - I did say ‘it was the only time my wife would agree to a threesome' funny what's said to ease the pain!! My oncology nurse talked me through the procedure and how I would feel both emotionally and physically. One of the things with BCG, it works or it doesn't. It seemed that mine worked from the start, with feeling pretty rotten and just worn out all the time, plus bleeding after the second treatment. It wasn't really until my next biopsy the situation became more positive, when after the operation, my consultant said that my bladder was much improved and looked much better. At our results meeting, he confirmed that the treatment had worked wonders and no sign of the cancer was evident. To say this was a relief - knock me over with a feather!!
It has now been a little over two years since that time and to say all is well - I'm not sure and I don't want to sound negative but be honest. I gave up smoking after my first meeting with the consultant, going cold turkey - never want another one, as I feel cleaner and surprised how my body has improved. Plus the money helps. I cry in the shower because no one hears you or suspects. I have BCG treatment every six months now and always buy my nurse a little present to say thanks for sticking me with that tube, but it has reduced from six sessions to three, with only another three of four sessions left. The biopsies are every four months at the moment. I am very lucky to have the use of a private hospital, which means the consultant and often the nurse are the same, this gives continuity that I feel is important. I also look at that day as my ‘spa day' - no driving, pampered and sleep without dreaming. Until I wake up and need that first wee!
It's not easy, as the treatment makes my joints ache and I relate the feeling to coming off a long flight, where you feel wrecked, but your mind is spinning. It's like having flu without a snotty nose. My bladder does not work quite as well, because of scar tissue and the treatment. By not working as well, I don't mean it leaks or anything, but if I hold it, it's not a great flood when I go. At least it works and the treatment eases after a couple of months. There are side effects, but I'm sure everybody is different. I still work as hard, if not harder than before, still have an allotment and a large garden and taken up cycling to stay fit and get some weight off.
After taking from the nurses and doctors, I felt it was time to give something back, so my stepson and I did the first London to Brighton Night ride in May of 2012 and raised £1100 for the local hospital cancer unit. That felt really good!As a last note, bladder cancer is not easy, as with any cancer or illness, but there is hope and blind stubbornness to succeed and beat the odds. I don't think of when I retire or when I'm old, but I do know the next few months will be ok and my family love me. That enough for me now!!