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Real Stories...

My name is John

"Yes, I have a stoma and I have a urostomy bag … these things I have accepted and can live with … I AM ALIVE!"

Hello all, I'm John. I'm fast approaching my 69th birthday and I am married to Valerie, a retired midwife. For the past 18 years I have been the financial controller for a family group of companies and I still work full time. My wife has become my PA since her retirement. For the last 25 years we have spent our holidays exploring the western states of the USA. We especially love Yellowstone Park and have family friends in Great Falls and Bozeman, Montana.

My mother is now nearing her 90th birthday, and I am the eldest of her six children, although sadly two of my younger brothers have passed away. I have always been fairly active and fit and enjoyed outdoor activities. In my younger days I was into athletics, football, caving and cricket – in fact I still played cricket until my late 50s. I was also a scout leader, and a member of the Rover Scout organisation in my local town – part of our service commitment was supporting the regional Civil Defence force. I have three children from my previous marriage, eight grandchildren and five great grandchildren, who all keep me on my toes!

How did bladder cancer come into your life?

I was 67 years old, so some might say a perfect candidate for the so-called ‘old man's disease’. I had had ‘funny’ sensations sometimes when finishing passing water. My wife Valerie, a nurse and midwife, did a urine stick test that showed blood in my urine, although there had been no visible signs. Then it was a visit to my GP, with blood and urine tests. I was told it definitely wasn't a problem with my prostate and was referred to a urological consultant.

In December 2013, following a cystoscopy I was told I had a tumour of the bladder. At the time it was no big surprise, as the doctor doing the procedure had directed me to look at the screen so I was actually seeing what she was seeing. After an appointment with the urological surgeon I was admitted to RSH Shrewsbury for a TURBT to remove the tumour. I was only in hospital overnight, and on the third day after the procedure made the mistake of going back to work. This, in retrospect, was a BIG mistake. I should have left it at least another day.

I also had CT & MRI scans done just before Christmas, and in another consultation with the surgeon in January was told that the growth was cancerous. They scheduled me in for another TURBT at the end of January, and this time I did not try to rush back to work on the third day!

What was the initial cancer diagnosis?

The local MDT (Multi-Disciplinary Team) met and discussed the results of my scans and pathology results. In my subsequent meeting with the consultant I was told that I had high-grade CIS (carcinoma in situ) and I was offered the choice of BCG treatment or an RC. What to do?

In some respects I was lucky, unlike the majority of people I had heard of bladder cancer, and Tracy and Andrew (who set up Fight Bladder Cancer) were family friends. On my way home from the appointment I phoned T and A, told them my diagnosis and asked if Val and I could meet up with them for a chat. I had more or less made up my mind that I would go for the RC before our meeting. We met for lunch and I had a list of questions to ask, but I don’t think we needed to ask any – between ordering and eating our meals, Andrew started talking about bladder cancer, its ramifications, treatment and life after an RC, with Tracy adding her insight into it all. What a fantastic experience, almost a precis of the information on the FBC website, all over a good 4-hour lunch.

That meeting confirmed my decision to go for a RC. I reasoned that at age 67 and in reasonably good health, a major op now would be preferable to a 3-year course of BCG with the risk that I might still need RC at age 70+. I have not regretted that decision (especially in view of the shortage of BCG).

In early spring I met again with the surgeon and told him I would have the RC. He said he would need a while to schedule theatre time but that it would be within the next 3 weeks or so. I asked if I had time for a holiday before surgery and he said OK as long as I was back by mid March. So, Val & I flew to the USA to stay with our friends in Montana and had a fantastic 2 weeks. We arrived back and a few days later I had my pre-op ready for my operation the last week in March.

I was so lucky, I was the only one on the surgeon's list that day. I arrived at the hospital by 11 am, I had the operation and was back on the ward by 5.30 pm. Five days later I was released from hospital. Ten days post op I was clear of all drains and my staples were removed. Within 2 weeks I was phoned by the urologist with the news that my blood work was good, my lymph nodes were all clear and there was no residual malignancy identifiable within the bladder.

I've since had follow-up scans at 6, 12 and 18 months – all clear.

What life changes have you made now you are affected by bladder cancer?

I have tried not to allow bladder cancer to make too many changes to my way of life. Yes, I have a stoma and I have a urostomy bag attached to my tummy, which I choose to change daily. At night I attach a night bag to that urostomy pouch. These things I have accepted and can live with … I AM ALIVE.

In the year after my RC I did not go to the States for a holiday, but this year I flew from Heathrow into Calgary, Canada with my wife and then spent a wonderful 2 weeks driving down through Montana and Wyoming, staying with friends in Bozeman, before returning to Calgary to fly home.

What positives can you share about your experience?

I am an active supporter of FBC, and whilst helping to man the stand at the BAUS Conference last year was told by Andrew, “You are now a regional coordinator for Fight Bladder Cancer, get out there and spread the word, people must be made aware of this often forgotten disease.” I am still trying to do his bidding! I am also one of Snettie’s Bladder Buddies, available to talk one-to-one with people who want that form of direct contact. I find that this is a very rewarding experience, as you can really make a difference.

What advice would you give someone who has just been diagnosed?

To someone who has just been diagnosed I would say “Don’t panic!” That's very easy to say, but not so easy to accept. You need to know exactly what your diagnosis is and what course of treatment is being recommended. Do explore this website fully and carefully read through the Just Diagnosed section and take note of the questions to ask your medical team. Join the Confidential Forum and don’t be afraid to ask any question at all on there. The only silly questions are the ones you don’t ask. Someone will always respond to your posts.

I am aware that some people are reluctant to talk about bladder cancer, possibly due to people being brought up not to talk about wee. I am not in the least embarrassed to talk about it, and if anyone asks about having to wear a bag or wants to know about my stoma I'm always happy to answer their questions. I have even gone to the extent of showing my bag. It is now part of my life. As I said earlier … I AM ALIVE.

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