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.
If you would like to tell your story please do get in touch with us by email at email@example.com
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 Journey with Bladder Cancer by Alan Smith
My first encounter with bladder cancer occurred in the late 1970's when my mother was diagnosed with the disease. At that time, little was known about bladder cancer, and she was never fully advised about her condition. She was not aware that this disease would reoccur throughout her life. After her initial surgery, she did not feel the need to attend further examinations and consequently, she died from the disease at age 57, just 2 years after her diagnosis.
We can now fast forward to 2003. I had noticed on two occasions small spots of blood at the end of urinating. I did not attach great importance to this and did not seek medical advice. This would all change later that year when I went on holiday to Spain. Upon arrival at our resort, I needed the toilet. I found one near reception and proceeded to relieve myself. When I looked down at the bowl, I wondered whether all of that blood was there before I started. I was now bleeding a lot and continued to pass blood for the rest of that day.
After a fraught day trying to hide from my partner that something was wrong, I finally told her over dinner what was happening. Her reaction was one of total anger that I had tried to hide it and had not sought medical advice sooner. First thing next morning, she arranged for me to see a doctor. After handing over two hundred euro giving samples and having a scan. I returned the following morning and was told I had a tumour in my bladder that was bleeding and needed to be removed as soon as possible. The Spanish doctors persuaded me to have surgery the following day and assured me I would be able to leave the hospital the same day and be able to finish my holiday. I would later regret that decision.
Following this, I spent much time haggling with my insurance provider to prove that this was a new condition, and that I did not know that I had it when I left England. This involved the company contacting my GP and asking to see my health records. This debate continued right up until the moment I arrived at the hospital. The doctors would not proceed until they had a guarantee of payment. Meanwhile, I waited and worried about my condition and what would happen to me. Finally, late afternoon the guarantee arrived, and I was admitted, so that the procedure could be started.
I awoke late at night alone in the dark and it took some time to remember where I was and why I was there. I had intravenous fluids and a catheter which were both new to me, as I had never been seriously ill, or had any surgical procedures before this. I lay there in the dark, afraid and feeling very vulnerable. When it became light, a nurse arrived to do blood pressure and temperature. She did not speak English and my Spanish was only useful to order coffee! Later that morning a doctor arrived and explained that the surgery had gone well and that I could leave later that day. I asked about the catheter and was informed that it would have to stay in for seven days.
Later that day my partner arrived and helped me dress and we returned to our holiday resort. I spent the next two days sitting on our veranda watching the sea and learning to live with a catheter! Life was looking bleak, and I had plenty of time to consider my future. I felt frail, tired, and bewildered, much of which could have been avoided with good counseling before the surgery. The word cancer was never spoken, and I was deceived into believing this was a simple everyday procedure, rather like having a tooth out, and I would be able to continue with my holiday without so much as a hiccup. Well, for the Spanish doctors it was all about the money, they were fully aware that I would return home and they would not see me again and no follow up treatments would be required.
The night before our flight home, which I was dreading, I received a phone call from a nurse who worked for my insurance provider to enquire if I was ok. I told her that I was feeling ok, but I had a catheter and was due to fly the next day. She was very alarmed and told me to stay where I was and not to fly, she would come and collect me the next day.
At this time, I knew nothing of the dangers of catheters and the complications which can occur, so I sat tight. We arranged with the resort to stay on a further day and the nurse phoned later the following day. She informed us that she had just completed a round trip to India re-covering another patient. She told us that she was very tired and needed to rest overnight at a hotel near the airport, and that she would be with us first thing in the morning, which meant we had to wait another night.
The following morning the nurse arrived and checked me over and pronounced me fit to travel. However, there was just one problem, the hospital had not given me the straps needed to fasten the catheter bag to my leg, so we had to rig up some support and set off for the airport. We managed to get three seats with British Airways which were in first class and my partner and nurse both enjoyed the first-class lounge! I was a little under the weather, and still dreading the flight and could not appreciate any of the hospitality on offer. The flight and onward travel were uneventful! and my fears were unfounded.
The following day my partner phoned our GP who arranged for the district nurse to visit me at home. The nurse examined me carefully and decided that the catheter could be removed. I was apprehensive about this, but it was over quickly, and the pain was short lived.
I was now at home resting with all of this behind me and looking forward to the rest of my life. Still no mention of cancer or follow up treatments. I returned to work and carried on as normal unaware of what was in store for the future.
Several months passed until one day, I felt unwell with severe headache, and vomiting. I was sent home from work as I was completely unable to function. I took some pain killers and went straight to bed. When my partner came home, she was surprised to see my work boots and bag on the floor in the lounge, this was not my normal behaviour, so she searched the house and found me in the spare room sleeping. She woke me, and I explained what had happened but that I was now feeling better. She called our GP who said I had to see him the following day.
You may have noticed that my partner has been the main driving force behind me seeking medical advice. Family support is crucial at these times so do not try to hide your condition and do not try to go it alone. I was a typical man and felt I could handle anything thrown at me, but without my partner's care and support, I don't think I would have survived until now. If not for her, I would have shrugged off this latest episode and just carried on, but now I had an appointment to keep.
My GP could not fully explain what had happened over the last couple of days, but he questioned me in depth about my experience in Spain. The conclusion was that the recent headache may be nothing, or maybe something to do with my bladder condition. He then asked if I was aware that I had had bladder cancer! There it was the first mention of the word! I admitted to him that it was in my mind, but I had not been ready to recognize the truth. He then set about getting me checked at the hospital.
The next few weeks saw me attending several appointments at the hospital where I gave samples of blood and urine. I had x rays and finally a flexible cystoscopy. The results showed no evidence of the cancer spreading, but I had more tumours in my bladder. Surgery followed, and my fight against this disease continued. Since then, I have had many flexible cystoscopies and while sometimes nothing is found, on several occasions, tumours have been found resulting in surgeries, chemotherapy (Mitomycin) and more recently BCG immunotherapy. Sometimes I have suffered with complications like bladder infections which can be very disconcerting, especially the first time as I did not know what was happening. At times I have been unable to leave the house and my GP has had to visit me at home. The process is always the same, give urine sample, identify the infection, and prescribe targeted antibiotics.
A more alarming complication was when I suffered muscle damage during one surgery which closed off the exit from my bladder. Everything was fine immediately after the surgery before I went home, but the following day around mid-morning I could not urinate. After several hours I phoned the hospital and spoke to a nurse on the ward, who told me to drink water and eventually I would be able to go. Wrong! By mid afternoon I was in agony with a full bladder and unable to relieve it. This condition is very painful! and distressing and I simply could not function; I was unable to sit so I paced around the house, and I could not concentrate on anything. My partner came home late in the afternoon and seeing the state I was in, took me to A & E where a catheter was inserted, and my bladder drained. I went home with the catheter; it would be three weeks before the catheter was removed.
I must stress that this condition is rare and has happened to me only once in twenty years.
During the last twenty years I have not been immune to all the other health problems that can affect people such as coughs, colds, and flu. By far the worst was when I developed pains in my lower chest. I did not know if I was having a heart attack, or the cancer had developed into something more serious. It turned out to be gall stones, and the treatment entailed removing my gall bladder. I had serious complications because of this and was off work for several months. When I recovered and returned to work, I then developed pain in my stomach which turned out to be a hernia caused by the gall bladder surgery. Further surgery was required and a further three months off work. During all this, I still had to attend checkups, and had surgeries to remove tumours found in my bladder.
My manager was less than sympathetic to my condition and often did not pay me, so I often had to use my holiday entitlement to cover hospital appointments. I have recently found out that employers have a legal duty to support employees with serious health conditions like cancer, and what my manager did was against the company policies. If you are employed, do check with your HR what your entitlements are so you do not need to worry about job security and financial instability.
Throughout my treatments and examinations, I have found all NHS staff to be totally professional and dedicated carers. I used to be embarrassed about having to expose my private parts to so many people, but trust me, you have nothing to worry about, but if you do, talk to your health care professionals. They have seen or heard about it all before, and they really can help you. I found my GP's, apart from the first doctor I saw, less able to talk about this condition. This may be due to either a lack of knowledge or awareness of this cancer and I kept finding myself referred back to the hospital consultants with my questions.
I have never let my cancer define me and have led an active life ever since. I worked full time until the age of sixty-eight, I belong to a clay pigeon shooting club and walk the shoot whenever I can. I have a passion for travel, and during the last twenty years I have visited the United States four times, most of Europe and the Mediterranean, North Africa, South Africa, Russia, the Near East and the Far East. I have flown many times and been on several cruises. Travel insurance can be a problem and expensive but shop around and find the best deals.
To round off my story, so far, I have had two courses of Mitomycin, 2 years of BCG, many TURBT surgeries, and I am currently still being monitored. I have always been guided by my consultant and the nursing team on which treatments I should be having, and I have never been tempted to search online for anything to do with my bladder cancer. Regarding any future treatments, this will depend upon the development of my cancer, and what my doctors consider I am suitable for. I am not aware of any other treatments that are out there so perhaps that is something that medics should be aware of, so they know their patients are being told about all the options available to them. I do still wonder whether if I had had BCG sooner, this may have been a better option for me in the long run.
I am now 70 years old, I still have my cancer, and despite the dark days in the past, and the uncertainty of the future, I am living my life not just surviving, although I really am a survivor!
When I was first asked to write my story, I wanted to hide my identity and use a different name. However, having now attended a local bladder cancer patient support group for several months where we talk openly about our cancer, I don't think it matters anymore; being involved with the group has enabled me to be more open.
ABC UK would like to thank Alan for telling us his story and agreeing to share it with others.