My bladder cancer was officially diagnosed on Wednesday October 16, 2002. It was the worst day of my 55 years on planet earth. It was also the most uncomfortable and scary night I have ever experienced, and I was in a major hospital with all the best equipment, doctors and nurses, and a ward with many rooms, mostly occupied by men, similar age to me, and guess what. A lot had bladder cancer. I kept thinking to myself. This is a bad dream. However, I knew it was not. And if I did not want any more bad dreams, I was going to fight this cancer, with every ounce of strength I could muster. I was scared, very scared, and did not sleep a wink. I had a catheter and was drinking as much water as nurses would allow, and they kept emptying the container attached to the bed. My bladder was working O K but it hurt, and so did my whole body. I had been admitted to hospital for a Rigid Cystoscopy + Turbt. About a 3-day stay I was told. What happened was they stopped some where during this procedure because the surgeon found more than expected and a right kidney and ureter would have to be removed.
I had never had a general anaesthetic before, and I guess I was still a bit groggy when the doctors told me the news. My wife and youngest daughter were at my bed as well. I can still see the expression on their faces. You see, like a typical stubborn male, who never gets ill, visits his doctor only to get a shot for an overseas trip and when I take someone else who is sick, was peeing blood on and off for about 3 years. I did absolutely nothing about it. Each time my urine was red, or pink in colour, it did not hurt and disappeared usually in a few hours. Or even by my next pee I had also been very clever in telling no one. I kept believing it was nothing. Oh boy, was I wrong.
On the 31st August 2002, I had woken with an acute need to pee. It was a Saturday, and I was rostered to work, as was my wife (we both work at same place). I rushed to the toilet and did not believe what I saw. Lots of blood and some small pieces of what I can only assume where blood clots. The pain did not go away, and even given the fact I had emptied my bladder, I knew this was not good. WE both travelled to work with me driving, and I lasted till about 12 noon. I had several visits to bathroom at work, and my pee seemed to be all blood, and the pain was getting worse. I rang my local doctor and he was closed. So, I took a deep breath, tried to look better than I felt, and walked into the showroom where we worked and politely asked my wife to drive me to hospital. She was attending to a group of customers at the time, but she knew something was wrong. I briefly told my boss my problem and he was very sympathetic. My wife drove me in and we discussed how long I knew something might be wrong. When I said on and off for about 3 years, she was speechless. We promised each other from now on that there would be no secrets from each other about any health problems we have, or even think we have. This is one piece of advice I would give, other than hiding a problem for as long as I did.
When the Triage nurse saw my urine sample at the front counter of the emergency room, she informed me that I did have a problem and the urologist came down immediately. At first he thought prostate, so the usual examination was done. He got a second doctor to do it again, and they decided not prostate. Things were sounding better. They did more tests and asked lots of questions over the next few hours. That’s another piece of advice I would give. Answer everything, and don’t say you only smoke 5 cigs a day. I had given up smoking in 2001, but smoked 15 a day for 30 years.
The rest of this story is about being positive. I will keep it as brief as possible. First I had an ultrasound and a scan. Something found in bladder and right ureter on 13th September 2002. I had numerous blood tests and was in Pre Admission clinic on Wednesday 9th October. An IVP followed on the 10th, (next day) Things were happening, but a lot of waiting. I found being patient was not that difficult. However, when the rigid + turbt on the 16th did not go to plan, and my condition was obviously a lot more severe, I did start to think that losing a kidney was not the end of the world, but what else was going to be removed?
A CT scan, a few more tests, and a few days away with my wife, 3 kids and at that time my only grandchild (we now have 4). I was preparing for the operation by spending as much time with my family, resting and getting as fit as you can in a few weeks.
On 6th November I went to see one of the surgeons and had the operation explained to me. My kids had given my wife and I a hot air balloon ride as a Christmas present in 2001. We immediately rang and booked an early morning. Thursday 21st November. Exactly 7 days before my operation was due. As luck would have it, we passed directly over the hospital at about 6.30am in cold, crisp morning air. I explained to the balloonist that in exactly 7 days, and at about 7.00 am I would be down there having my operation, and apologised for not helping the other passengers get the balloon ready. The next time I saw the hospital was exactly 7 days later, and the balloons where going over the top again. It took my mind away from the operation.
The operation was called a Nephrourectomy. I had my right kidney& ureter removed & a 4-inch part of bladder removed. The kidney was grossly hydronephrotic. It took about 4 hours. Post operation was uneventful and I was sent home after 8 days with a catheter. The cancer was T2 and not invasive. I had the catheter removed after about 3 more weeks. It was uncomfortable, particularly when I walked around.
I had a flexible cystoscopy after 3 months (all clear) and since then 3 more. I have one each year now. Also I V Ps at 6-month intervals (also all clear so far)
My only post operation problem was infection. Kept coming back every month. I had about 6 courses of anti biotic tablets.
Then, on Saturday 18th October 2003, Disaster struck. I suffered a minor stroke at work, and spent 5 days in hospital. This is all behind me now. I consider myself very lucky. I have regular checks at hospital and at local doctor, and participate in some trials.
I am glad I found this site. I wish I had found it 2 years ago. The human body is amazing in its ability to repair and heal from major surgery. I remember how weak I felt after the operation, but every day I was able to walk a bit further, get more strength, even play golf, and get back to normal.
I am back at work full time, and most people and friends who know me cant believe I have made such a good recovery.
Every day to me is a bonus. The doctors said about 70% of my type of cancer can return, not to mention having another stroke. My surgeon said I was very fortunate and that he would not have operated if I had been 75. He thinks I should make 75. I would be very happy if I do, but could sure do without the cystoscopy every 12 months.