I have agonised over whether to write this piece, but after the interest that the previous piece on cancer has generated, and the continuing interest in my 2013 piece on beating type 2 diabetes, I thought I should share my experience in the hope that it will shed light into corners others are frightened to look into. I have been somewhat surprised to find this shadow has fogged the vision of the medical profession as well as those for whom cancer is simply the darkness that envelopes other peoples lives.
Firstly, let me say that as I write I have been told I am ‘cured’, my cancer gone, along with the type 2 diabetes. This story is about the road followed to get to this point, with clear indicators for those who may find themselves travelling in the same direction. Right from the start I have to make it clear that I would not have arrived here without both the clear support of my partner and the dedicated help of the men and women of the world’s second largest employer, the British National Health Service.
Only the Chinese Army is a bigger employer apparently, and I am pretty sure that their employees do not have the empathetic approach to their work that has characterised my treatment. We are quick to complain about our health services but for me they have always been there, always been effective and efficient, always care. Maybe I have been unfortunate but I have been a child of the NHS, it being brought into being in the year of my birth.
I was first operated on when about six, taken by ambulance to hospital again with a burst appendix when 13. So long ago the ambulance was British made and had a bell – neither of which we see or hear today. Suffering peritonitis, the family was apparently brought to my bedside to say goodbye, but the NHS nursed me back to health, as they are doing again now.
I have written of the shock of diagnosis, for when one is told one has cancer it can seem like a death sentence. It isn’t. Apparently one in two of us develops a cancer and survival rates in Britain are over 50%, so survival is more likely than not. My particular brand of cancer developed in my bladder, and the first impact on me came when I was tested and then given the diagnosis. Walking into the room to see not just a consultant but a team of nurses I didn’t need to be told the results of tests in response to passing blood some two weeks before. The NHS appoints a care team who are the ones it is possible to speak to on the phone and who will provide a set of familiar faces throughout the treatments that follow.
There are 3 stages in bladder cancer, and because of the bleed, mine was caught in its initial stage T1. A camera into my bladder, through the obvious route, guys, revealed a covering of small cobwebs. This was the cancer. I have been fortunate that I have received a relatively new treatment, in which my bladder is filled with .5 of a millilitre of Tuberculosis bacillus. One possible side effect I was warned is that I could develop Tuberculosis, but this has not happened.
The bacillus is introduced by a catheter through the obvious appendage, and treatments happen every week for a defined period. The treatment has a high success rate, but in extremis the bladder itself can be removed. One has to hold the liquid bacillus in the bladder for two hours, and sit whilst peeing to ensure the possible dispersal of the infectious virus is only into the toilet bowl. After peeing bleach is poured into the toilet and left for 15 minutes before flushing to avoid the bacillus getting into the sewage system. Sex is not recommended for a week after a treatment because of the risk of infecting a partner with TB.
There are side effects. Firstly, the reaction to the virus can be debilitating, leading to headaches and flu like symptoms. Urinating can be painful and passing blood and blood clots can continue for up to two weeks after the treatment. Initially treatment happens every week for six weeks, and one quickly gets over any embarrassment at having private parts handled by very professional nursing staff. Thereafter treatment repeats every three months with two weeks of bacillus alternating with a camera inspection. This sequence I am told will continue for at least two years and up to five. As matron said “we never let you go”.
Patients are asked to forgo alcohol and caffeine as both are irritants in the bladder and can affect the efficacy of the treatment. I developed a taste for camomile tea. Missed my morning coffee and did not miss the alcohol. Inoculation of badgers stopped because of the shortage of TB bacillus, with all supplies being diverted for treating humans.
The effects above are the physical. There are psychological effects too. The fear of death rides on one’s shoulder like something from a Durer etching, and in itself is something I find makes it difficult to be creative. I find it difficult to work in the studio if only because of the frequency or absence for treatment and going to the toilet alongside not feeling well. The exhilaration and joy at being told one is clear is unbelievable and one treasures the smallest experience that says one is alive.
If this piece reassures one person that there is light at the end of the very dark tunnel, then it has served its purpose. I’m not quite out of the tunnel yet, but almost. The studio beckons, life must be lived.
Addendum: 11th January 2016. It was announced this morning, the day after I published this, that David Bowie, same age as me, died of cancer….