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 am 71 years old, married and living in Wiltshire in the UK. I retired from my own business some 8 years ago and have been enjoying my retirement in a beautiful part of the country. I don't drink (used to but gave it up many years ago), and packed up smoking several years ago. I am reasonably fit and enjoy walking my dog every day.
My story begins in August 2011. My wife and I were touring in Southern Ireland when suddenly I developed what I assumed was cystitis. Need to pee frequently and stinging sensation. We treated it with OTC medication whilst on holiday and it cleared up. On our return it flared up again so I went to see my GP who tested a sample in which he found some blood and gave me some antibiotics. He also referred me to the local hospital and the Urologist. I remember my wife commenting on the journey to the hospital that this was probably the beginning of a long journey - How right she was!!
My first cystoscopy was in September 2011 when the urologist found some Polyps in the bladder. This was followed by my first TURBT in October 2011, result atypical cells. (TURBT stands for Transurethral Resection of Bladder Tumour - in laymen's terms they put a microscopic camera up the water pipe into the bladder and then using small instruments fed up the pipe they can remove any tumours and seal the tissue around the growth to prevent any recurrence - I must admit I cross my legs and wince whenever I think of this procedure even though I went through it a number of times and always under general anaesthetic) This was followed by a CT scan in December 2011 and then a further cystoscopy in March 2012 where abnormal patches were seen. Next TURBT when the result was G2 (High Grade) pTI TCC. All Double Dutch when it was explained to me by the Macmillan Nurse Specialist, Sian Fletcher - but it was cancer (the dreaded word appears!). I must admit that the Macmillan Nurse Specialist has been a fantastic support throughout my journey and continues to be so. In July 2012 we start the dreaded BCG treatment. 6 installations over 6 weeks. The nurse assured me that there no side effects and all would be well. First two were OK, a bit tired next day and some pain in peeing for a few hours after the treatment, then with further treatments the side effects started with a vengeance. They included pain in peeing, extreme tiredness and irritability, joint pain, and swelling on one leg (another rush to hospital as they thought I had got DVT which turned out to be excess liquid which was gradually absorbed into my body.) Anyway most of July and August were written off as I was not capable of travelling further than a few feet from the loo. Drove 12 miles one evening and stopped for a pee 5 times! At one point stopped in a town, and dashed into a betting shop, not to place a bet, but because I had been told that betting shops have toilets in!
A bit of a break now until November 2012 where a cystoscopy showed more suspect patches. Before the TURBT could be organised the BCG nurse intervened for a maintenance course of 3 treatments which took place in February 2013. Same side effects and another effect of this session was that I lost the ability to control when I needed to pee. This control I have never got back and has caused me no end of problems in 2013, although it is no longer of relevance as you will see. The TURBT took place in March 2013, no abnormal cells found. A further cystoscopy in July 2013, more suspect patches, and another TURBT in August 2013. Result no cancer cells, but the urologist was unhappy. A Urine Cytology test proved negative but a CT scan showed a thickening on the bladder walls. A further TURBT in September to sample the bladder walls. Result no cancer cells. At this point I reckon the urology team got fed up with me and had a MDT (Multi-Disciplinary Team) meeting and decided that they needed to refer my case to the network MDT at the Bristol Urological Institute for advice. During all this time I am coping with little control of my peeing. Did some research online and found a company who made penile sheaths which could be attached to a leg bag. My sympathetic GP suggested we had a go with them, so I gave it a try. Although not totally satisfactory it alleviated the problem and meant I could travel further than the end of the garden again!!
Now the pace heats up and everything takes a different turn. Mr Jonathon Aning, a consultant urologist from BUI (Bristol Urological Institute) came to Swindon Hospital and I attended his clinic in October 2013. He explained that thickening of the bladder walls is almost always the beginning of the development of full blown bladder cancer and he gave me three options:
1. Stop all treatment, go away and live my life and face any consequences should they occur down the line.
2. Carry on as I have been for the last two years but apart from almost living in Swindon Hospital, run the risk of more radical treatment at a later date.
3. Take the bull by the horns, and have the bladder and all the other bits out.
I must admit I nearly fainted when he said this, nobody had suggested radical surgery before. Anyway he told me to go away and think about it. He gave me the addresses of a couple of Bladder Cancer web sites worth researching, and through the Macmillan Nurse, Sian, arranged for me to meet up with the Stoma Nursing Team. (At this point I am thinking what on earth is a stoma!!)
Went away and did the research as he suggested, even posted a question on a bladder cancer web site, and talked to the Stoma team (found out what a stoma was and what the operation involved). Talked it over at length with my wife and also my GP and came to the conclusion that option 1 was no good as if things did progress as the consultant suggested then by the time they found out it may be too late and as I found out Bladder Cancer is deadly and can be fast acting. Option 2 although slightly better as any progress would be noticed involved the endless Cystoscopies and TURBT's and may still not get anywhere in the long term. This only left Option 3, so I started to come to terms with it all. Joined the Urostomy Association to find out more, contacted some stoma supply companies for samples etc. and started logging on to Bladder Cancer support sites regularly. The UA Journal, Sian - the Macmillan Nurse, and the Bladder Cancer Advocacy Network web site were very helpful with my research. The information I found out helped me to understand what a change in the plumbing system would mean to my everyday lifestyle and I am sure that all of this made a difference to me after the operation. Saw Jon again on 5th November and told him I had decided to go ahead with the operation. He told me he would ask his Secretary to make the arrangements and contact me. Went home a bit shell shocked, and even more so when his secretary phoned shortly after we arrived home to tell me all the arrangements had been made for the operation on 3rd December.
So we now move to the next stage in my story. Went into Southmeads Hospital in Bristol where the BUI is based on Monday 2nd December and after a delay, due to lack of Intensive Care Beds, was taken to theatre on Wednesday 4th December. I had a Radical Cystoprostatectomy with Ileal Conduit Formation. Quite a mouthful isn't it. In basic terms they took out my bladder, prostate, a load of lymph glands in the area and took a bit of my bowel to divert the urine from the kidneys out to the abdominal wall. Poked it through the abdominal wall to form a stoma. I woke up with this funny red bit sticking out of my tummy with a drainage bag attached to it. Christened it "Tomas" (an anagram of stoma.) I had got tubes coming out of nearly every orifice and a load in my neck. Thank goodness there was no mirror in Intensive Care so that I couldn't see what machines were behind me! No pain at all as they had inserted an epidural which they kept in for three days and then pain was controlled with paracetamol. Hardly used it at all. Three days in Intensive Care before I was taken back to the ward. I had some hallucinations whilst in Intensive Care which were due to the effects of the anaesthetic - I was convinced that there were cameras in the ceiling filming me for a Panorama Programme - I think I expected David Dimbleby to turn up at any moment - a bit frightening for me but caused mild amusement to the doctors and nurses. They told me that hallucinations were quite common but that mine had caused quite a lot of mirth in the Doctors' lounge. I was on the Enhanced Recovery Programme which meant everything was brought forward and I was encouraged to get out of bed, and start walking the corridors ASAP (apparently this is to help the bowels wake up and start to function again) Walk, walk and walk again they said. I got to know the hospital corridors very well in that period.
Day 5 and I was off home with a bag of goodies from the stoma nursing team to start me off. Feeling quite good, and was surprised how easily I had come to terms with the fact that I would never "go for a pee again" but it would drip away into the stoma bag. Felt very tired and found that even a few minutes of effort resulted in the need for a lay down. The local stoma nurse came to see me after a couple of days to make sure that I could change the bag Ok and to remove the stents from the stoma, put in to ensure a good flow from the kidneys.
Several days later went to my local surgery to have the stitches taken out. The nurse found that I had a wound infection and that pus was seeping from the wound drain. A course of antibiotics was called for and trips to the surgery every other day for re-dressing of the site. This infection took a bit out of me and made me very tired. I also lost my appetite which was terrible as Christmas Day approached and my beloved turkey beckoned. Got over that and thought things were on the up when horror of horrors but the wound drain suddenly exploded all over again. A quick dash back to the Practice Nurse and Doctor. More antibiotics and dressings. In total I went to the surgery every other day for nearly 4 months until the infections were conquered. These infections undoubtedly put back my recovery by weeks. In all it took me nearly six months to get back to normal and although I moaned like fury about it at the time, it was a small price to pay for the end result.
Six weeks after the op. saw Professor Raj Persad at Swindon. He came from The BUI and is a colleague of Jon Aning. He gave me the wonderful news that no cancer was found following the operation. They were going to continue to monitor me every six months with blood tests and scans but go away and live my life.
So that's my story. How do I feel now. after recovering from the operation? No one tells you how major the operation is until after you've had it and recovery needs to be measured in months rather than weeks. With hindsight I think that it is better that I didn't know - it might have affected my decision to go ahead with the operation. Prof. Persad suggested that I would begin to feel normal again after about 4/6 months. I have got used to the stoma completely - it is just part of my life. Now I go to bed, connect up the night bag and go to sleep - no more getting up every hour or so for a pee - and sleep through the night. Wonderful. I still get tired and need to sleep for an hour or so in the afternoon - but why not after all I am 71! I am learning to really value this second chance that I have been given. After all I can't die of bladder cancer, haven't got on, can't die of prostate cancer, haven't got one. All the signs are good, I am being monitored every 6 months, no more TURBT's and chemotherapy - Just my Life.
Update - March 2016 - 2 years and 3 months into my new life:
Just had a cystoscopy to check the water pipe and been given my 2nd year clean bill of health!
My long suffering wife, Helen, and I toured the Highlands of Scotland 9 months after the op, paid our respects to "Nessie" and had a relaxing few days. Helen suffers from M.S. and how she has managed to have the strength to support me over the last few years astounds me. I could never have done it without her, and I am so grateful to her. I have got used to my new "normal". My stoma Nurse, Kim, has been a great help in getting me sorted with the right bag and delivery service so that I can order my supplies every couple of months and delivery is quick and efficient. My personal contact at the delivery company phones me every 8 weeks on a Monday morning, discusses my stock and needs, sorts out the prescription with the GP., and arranges delivery the following Monday in the morning. This works very well and has taken all the worry out of it. I know that I will not run out of stoma equipment and if necessary can get emergency supplies within 24 hours. Sian, my Macmillan Nurse has been a great support throughout this journey as has my GP
On a light note it is now just over 800 days since I last went to the loo in the normal way and do I miss it. Hell NO! I can now go several hours without an empty out, just pat my tummy every now and again to gauge how full the bag is. When we go out with friends I no longer miss half the conversation during my frequent trips to the loo. My body shape is a little different - seems as if I have a slight paunch. I can go to bed at night and sleep all night without being disturbed to get up for the loo.
Because of the slight change in body shape (caused by the stoma and the bag attached) it took me nearly a year to sort out the right trouser size. I have gone up one complete waist size, and if my wife reads this I assure you it is nothing to do with my cake eating habits!!
The recovery certainly was slow, in the early days it seemed like one step forward and then two steps back, but as they say - "A blade of grass grows one day's growth in one day's time!" As each day passed so it got a little bit easier - strength came back - tiredness got better - appetite returned.
I know some people reading this are saying to themselves - "What about my sex life - he's avoiding the question" Well I guess you're right. Because of my age it was not too big an issue and memories of the past can always be relived in your mind. If you end up have the bladder and prostate out the odds are that you can say goodbye to an active sex life, but if discussed with the surgeon first some nerves can be preserved to help and there are aids which can be used. I believe it is easier for those who have a neobladder rather than a stoma. And No! I am not going to go into all the pros and cons of Neo versus stoma - do your own research! I say this kindly because if the decision between the two is an option then you do need to do a lot of research. The Inspire Bcan web site, although American based has a lot of good info on this and produces leaflets and research on all the pros and cons. All I know is that it is a personal decision and everyone is different. I wasn't given a choice and am very happy with my stoma.
I fervently believe that knowledge is a great weapon in fighting this disease and if I can help to pass on this knowledge to other sufferers of BC then I will be paying back a little of the debt I owe to the many people who have walked beside me on my journey over the last few years. I know that it was only early diagnosis by my GP that resulted in me getting into the system and being seen by the Urology Specialists, which subsequently saved my life. Research has shown me that over 10,000 people are diagnosed with Bladder Cancer each year. It is a treatable cancer, but despite this about 5000 people die of it each year. It is the 4th most common cancer in men and the 7th most common overall but receives hardy any research monies at all.
It is time we BC sufferers stood up and shouted to the rooftops. I also believe that there is a real need for support groups around the country for patients, and their carers/partners to meet up and socialise and help each other through their journeys. I would have been very grateful for a support group particularly when I was going through BCG treatment. I believe that this support should be ongoing for as long as the patient wants it. To this end I have started up a support group at my own hospital in Swindon and also at the hospital where my operation took place in Bristol. My paying back will be to carry on passing the message and getting more groups up and running.
Dick is also now helping Action Bladder Cancer UK by working as our West Country Support Group Advisor - helping to set up and support patient groups in the West of England