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 bladder cancer.
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We can arrange for one of our Patient Support Officers 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 name is Neil and I am 40 years old, married with two fabulous kids. My story is a lengthy one, now stretching over 10 years, with some serious lows and highs.
My wife gave birth to my 10 year old son and a day or so later I passed a huge clot of old blood in my urine, I initially thought it was kidney stones as I have had them previously but there was no pain in my side or groin which I had experienced before. So I kind of ignored it but mentioned it to my wife.
The blood clot passed again around a month later and now I was becoming really concerned. Whilst this was going on my wife had a terrible birth and was re-admitted to hospital having gone in to shock the dayafter getting home followed by a severe bout of post natal depression.
My GP, unlike some I have heard about, did not hesitate and sent me for investigations, firstly an ultrasound, then an intravenous Xray and finally the good old camera. It was only after the camera they found a cancerous growth in my bladder close to the kidney inlet to the bladder. I was operated on 2 weeks later.
They told me it was G2 and superficial, I had a course of Mitomycin C and returned 3 months later for a follow up. During the initial operation and the follow up I had a catheter and suffered horrific trauma from either the procedure or the catheter, suffice to say this has never happened since.
I proceeded with 3 month check ups for the first year then went annually. I remained clear until 2 years ago when a red spot was found during a routine check up. The irony of it is they were discharging me for good before they went in with the camera if all was clear. Word of caution, never agree to biopsies under a routine checkup, I agreed upon the advice of a nurse even though the consultant wanted to get me back for general anaesthetic. Hurt like hell!!!
Now the real bad news, although the red patch had not formed in to a tumour this time it was G3 in exactly the same location. So I had a fabulous holiday in Mexico and came back to face the music. They removed the growth and again they gave me Mitomycin C.
I was then advised to take a course of BCG a month later, 6 treatments every Friday for the next 6 weeks. I was warned of the side effects but never suffered any, to be honest I had two bad days out of the six where I was a little more sore.
I went back approximately six weeks later for the check up following the BCG. In the meantime I started feeling a muscular strain in my back passage when stretching. When I met the consultant again I mentioned the pain and he said he would check it out whilst I was on the table. My bladder looked great to the eye and nothing could be found in my back passage.
The pain in my back passage became progressively worse over the coming weeks. I went back to my GP, he examined me and I had prostate-itis (not sure of the spelling). He phoned up my urology nurse and placed me on antibiotics for a week. The week passed and the pain remained, he examined me again and suggested it was an abscess. I was sent straight down to the hospital where the urology registrar examined me again. His response, "you have a fantastic GP,he has diagnosed that accurately". I was put on some nasty antibiotics and an emergency MRI was ordered.
I had the MRI four days later and they found an abscess on my prostate 5cm in diameter. I spent the day being asked by numerous consultants from different fields as there was only 5 white papers worldwide covering anything similar to my condition. Later that day my operation was cancelled and the news was broke to me that the BCG had not worked and it was looking likely my bladder would be removed. I felt like I had been hit by a ton of bricks.
Moving on, I had a drain placed through my buttock straight in to the abscess which brought a few laughs amongst us all (first time they had tried this). This was a success, they managed to grow the crap from the abscess and it turned out I have a form of Tuberculosis.
Now under the infectious and contagious department, I had 6 months of real nasty antibiotics (red urine, teeth turning black, and very loose). I also met a patient who had neo bladder reconstruction as this was the path I was going down.
I am glad to say my urology Consultant never gave up on me (if you are reading this, I owe you everything, thanks!!!!) he persisted with further biopsies, which went January G3, February G2, March Benign, yes benign!!!! His logic is that the abscess may have influenced the biopsies.
I have just been for my 6 month check up today and remain in good shape 15 months post being declared benign. Hence the reason I feel inspired in writing my story today.
If you are a sufferer reading this, please keep your spirits up and try and return to everyday normal life. Don't spend precious time wasted thinking about the worst that could happen, it may not happen at all.