ABC UK Trustee until 2014, Canterbury

My home is near Canterbury and I am now in my 70s and can look back on a life full of interesting things, some good, some not so good.  I am still well, and fit enough to also look forward to many more years, even though some areas of challenge might be considered rather more trying than having all the bits I came into this world with.

By the age of 58 years, I could reflect on a time of good health, 30 years service to the Police Force and a further nine years as a self-employed Insurance Claims Investigator for some major insurance companies where I specialised in motor vehicle theft and accident claims. My business had achieved the success that I desired and everything was rosy.  My two daughters had ventured forward into their own successful lives and three grandchildren kept us all together.

I should also mention that I had been a smoker of cigarettes for some fifteen years up until 1974 but such bad habits were well in my past and I was active, fit and healthy.

Then, one afternoon in September 2000 and without any warning or other prior symptoms, I was horrified to see that I was passing a considerable amount of blood in my urine.  An urgent appointment was sought with my GP but could not be arranged until the following afternoon, by which time my urine was back to normal.  My GP considered that I probably had an infection, or even polyps, and advised me to return if the problem re-occurred.  It did, some 2 weeks later, and I was told that it was probably only a minor problem, but he referred me to the local hospital for some tests to be made.  That took another month, by which time I no longer appeared to have either symptoms or discomfort.

Things came to head around Xmas 2000 when I bled again and then experienced a total blockage, apparently caused by whatever was in my bladder obstructing my urethra.  Following emergency treatment, I was put ‘on the list' for a full examination and removal of samples for pathology.   A few weeks later came the inevitable meeting with the consultant urologist where I was told that I was suffering from bladder cancer which had reached an advanced stage and it would be necessary to have my bladder removed and all that this entailed.   Even then I was a bit peeved that it had taken so long for this cancer to have been discovered.

Back then, I had no perception of what bladder cancer was, how to recognise it or that it was a life-threatening condition.  The consultant was honest and direct in answering my questions, which I appreciated.  It was after this meeting that I had to reconcile myself and my wife with the possibility of an earlier end than I had expected.  With the prognosis offered to me, I considered it prudent to sell my heavy Citroen diesel car and purchase a small automatic Toyota Yaris which was more suitable for my wife to use if I wasn't there.  We then put our trust in the surgeon's skill at the Kent & Canterbury Hospital and my thanks and respect goes to him and his team.

There were, of course, the inevitable postponements of the Big Day caused by lack of nursing staff, lack of the availability of operating theatres and other matters beyond control. I endured a couple of false starts and, in one case in March, actually sat in the hospital bed on a starvation diet on the morning of the operation before it was postponed again.   I was finally operated on in April 2001 and my bladder, prostate, appendix and adjacent lymph glands were removed.  Over some five hours, the surgeon hacked away and fashioned a stoma at the appointed position on my abdomen - not that I was aware of anything.  I spent the next 12 days on the ward before being ‘de-tubed' and thence returned home to recover and get used to my new stoma.

My stoma nurse was wonderful.  She had spoken to me at length, in my home, and explained the operation and was able to answer my questions.  I also met a hospital visitor, appointed by the urologist, who had, himself, suffered bladder cancer many years earlier and he was a tower of strength to me.

That summer, I underwent 4 months of chemotherapy which went by without too much aggravation.  My hospital was adjacent to the Kent Cricket Club at Canterbury so it was useful to spend the day at a match and popping across to the chemotherapy department for a couple of hours when necessary.

It was then time to resume a normal life with the obvious inconvenience of having to deal with the routine of bag changing and not getting too upset when accidents happen - as they surely did.

I decided to take a change of direction in work and did European vehicle recovery for the AA and Green Flag which took me all over Europe collecting exciting vehicles and returning them to their incapacitated owners a few days later.  Some consultancy work in connection with vehicle law was also carried out.  My wife and I were also able to make trips to see our daughter who had taken up residence in Australia.  Such longer trips took extra planning, in respect of travel insurance, aircraft seating and ensuring that my supplies were always to hand.   I also found the Australian stoma nurses delightful and very helpful when I needed their help on one trip.

Through my medical suppliers and stoma nurses, I became more involved in meeting with other men and women who had undergone similar experiences to myself and was invited to sit on an NHS committee as a ‘customer member', commenting upon the National Computerisation of Medical Records.  I was to find that the attitude of the professional staff took little heed of the public comments so I sought to give my time to other matters concerning International Cancer Research.  Around the same time, I joined PALS (Patient Advice and Liaison Service) at the Kent & Canterbury Hospital.

Through Cancer Research, I was then invited to join a Medical Trials Group for three years, looking into bladder cancer treatments with a view to bladder preservation, and was also asked to join a further ICR-funded Trial investigating upper tract urethral cancer, for which very little standard treatment had ever been agreed upon, and taking in the latest advances and ideas in the general treatment of urethral cancers.  Such trials can receive world-wide recognition and can advance medical knowledge and skills to benefit patients everywhere. My only qualification for sitting with experienced medical experts in these trials was as a patient who had undergone the procedures provided through the Health Services and contributing my views from the patient's point of view.  The practice of being involved with these Trial Groups has also given me a far greater knowledge of bladder cancer-related matters as well as the terminology and science surrounding cancers in general.

In 2009, several eminent urological consultants and clinicians launched Action on Bladder Cancer in the UK, which is a charity to raise awareness of bladder cancer, supporting research and campaigning to move bladder cancer up the healthcare agenda.  I agreed to become a trustee and worked on promoting their aims.

As to my own personal life, I have, for the past 6 or 7 years used the services of commercial medical supplies distributor to have my stoma products prepared and delivered to my home.  I keep up with the continuing improvements that are evolving in the products and see no cause to change what is, for me, a very satisfactory arrangement.  We all have minor annoyances with occasional leaks and skin problems but it does not detract from my active lifestyle.  I have joined a local Fitness Club where the facilities include a gymnasium, pool, spas and steam room where I attend three times a week if possible.   A fitness trainer spent time discussing my condition with my GP and designed an exercise regime which avoided any conflict with my abdomen and stoma.  My wife and I enjoy walking in the countryside around our home village and always seem to end the walks at some acceptable hostelry for a glass of real ale.  Which brings me to the main benefit of having a stoma!  After retiring to bed at the end of the evening, that is that until 7am.  Not having to get up in the middle of night is brilliant - I just make sure the night bag is big enough!

I have two regrets.  One is that, 10 years ago, bladder cancer might not have been immediately recognised by some doctors as quickly as they seem to do now.  Medical opinion suggests that a quarter of all sudden symptoms of haematuria are due to cancer.  To that assessment must be considered age and personal history that would raise the affected percentage.   Perhaps if I had been a bit more assertive towards my GP in September 2000, tests might have shown up the problem earlier and I may still have a bladder now.  But, here I am, thoroughly enjoying life and getting satisfaction from volunteering my involvement with cancer-related charities.  I have no problem talking to others about my health matters and I seek to continue being positive about life.   Of course there are downsides, with a greater degree of planning required to complete a happy day.  But there ARE happy days.

And the main regret?  I do wish that I had not smoked when I was younger.  I have learned that smoking is the overwhelmingly main cause of bladder cancer. No-one told me that in 1958!  We ought to tell the young people now.

Download this article: A good life 91421agoodlife.pdf 08 Dec 2011 (PDF 47,27 kB)

Tony worked as a valued trustee for ABC UK until he stepped down in early 2015.