2018 has been a difficult year, I’m not one for sharing my troubles beyond my family and close friends but under pressure from my incredibly wise and forthcoming wife (Heather) I have been persuaded to put words to paper in the hope of helping others who are about to suffer similar experiences

In the early months of 2018 I was running around my local park five or six times a week and generally keeping fit. In late March I found that I couldn’t get up the hill in the park without walking which seemed strange almost as though someone had cut off the energy supply. I persisted to no avail and then developed a pain in the lower right abdomen, ‘Ah a hernia’ I thought after all the pain was in the right area. I went for an ultrasound and was informed that there was no hernia. Unfortunately the instructions to the examiner were ‘Check for hernia’ and nothing else was mentioned. So I put my tiredness down to age and walked instead of running.

On March 30th after walking up quite a steep hill I went into a toilet for a pee, it came out blood red. After returning home to inform Heather, I went to hospital where they did an ultrasound of all the organs in my abdomen. They found something in the bladder, a cystoscopy revealed a tumour. Within a two weeks they had me in to remove the tumour but it had penetrated the bladder wall into the muscle. This made it a stage two tumour it was likely to spread if not treated quickly.

You can’t go back and change the past but had I known enough to ask more questions at the hernia stage the tumour might not have had time to grow so much. So, reader, if a pain isn’t what you or the medical services think it is then insist that they look further. Not a hernia what is it? Not the prostate, what is it? It isn’t helpful knowing what you haven’t got.

I then moved on to four months of intravenous chemotherapy. Three full cycles each cycle meant three visits for treatment. Chemo doesn’t hit everyone in the same way and there are several types of treatments for different cancers so don’t think that this is the inevitable route that chemo’ takes it was just my route.

I was surprised to walk out of hospital after the first six hour dose feeling quite well but as the next few days passed I found myself curled up on my bed all day. It was akin to combining a bad hangover with seasickness while someone was squeezing my heart. I had drugs to reduce nausea and to stop vomiting but they never took the feeling of illness away. It never stopped even when I was sleeping. After about ten days I began to feel a little better but by then it was almost time to return for more chemo.

A ‘cycle’ was one big six hour dose and two small one hour sessions over about five weeks. The small doses took about four days to fade. I felt trapped in a physical and psychological prison. I walked to the corner shop every day and back but that four hundred metre round trip was exhausting.

As the weeks passed I became anxious every time I returned to the hospital. In my mind and body the hospital was associated with being poisoned. I asked for sleeping tablets and received them. This was important because for the six hours that I was in a drug induced sleep I couldn’t feel ill. It was a rest and it helped. I discovered that I was considering different ways of killing myself should it get too hard to bear. Perhaps the Deadly Nightshade or the Yew that grew in the park? I never got close but the thought was there. My exit would hurt too many other people to travel that path but the sleeping tablets helped.

I would have starved because I had no appetite but fortunately Heather knows that all things are cured by food and she brought me healthy and tasty foods even when I didn’t want them. Once I started to eat I found I could eat the whole dish. People on chemo who are alone will lose weight if they aren’t fed. If you have a friend on chemo take them high fat, tasty foods even if they don’t want it. My weight remained steady thanks to being given food even when I didn’t want it. In November 2018 the chemo ended. In the last cycle I called in and said I couldn’t come in for another session I was too scared of the treatment. They cancelled the last session.

Chemo stops cells from growing to prevent the fast growth of cancers it stops everything from growing, gut cells, hair, bone. Being careful about cuts and scratches was important because they struggled to heal. The gut was often paralysed which resulted in constipation - as if there wasn’t enough to cope with.

Chemo fogs the brain, I could only read or write for about an hour in the mornings so I edited a manifesto and finished a short book that I had been working on during those hours of lucidity. I felt as though I was achieving something by using this small window of opportunity.

I have taken CBD oil since the chemo ended, I don’t know if it really helps but it does help relieve the constipation.

I was admitted to hospital today (Monday) and on Wednesday the surgeons will remove my bladder, prostate and lymph nodes to maximise the chance of containing all the cancer. Tests have shown no sign of it being elsewhere. I will be in intensive care for four days and all being well I will be out of hospital after a further two weeks. (Back to enthral you!)

I spoke to friend (David) who had a similar operation ten years ago and his knowledge was helpful and reassuring. The platitudes of well-meaning friends aren’t that helpful and sometimes it is tempting to reply to their kindness with, STFU how would you know? Messages and calls were more welcome than anyone can imagine. If you don't know what to say then send a text or a message.

I had two options for the procedure, a drain to the side of the body with an external bag to catch urine or an internal substitute bladder (neo-bladder) made from a piece of small intestine. I opted for the first procedure because if the neo-bladder failed to function I would be forced to return to have the operation again. Secondly, a neo-bladder must be voluntarily emptied every three hours even at night and thirdly, with the bag I would be continent straight away and able to travel. At sixty-one a good night’s sleep and being able to wait for the toilet is more important than the cosmetics of a neo bladder and being able to pee through my penis.

Where that item is concerned (the penis) there is a high probability that it won’t function in any capacity again. I thank God that I am not thirty as this would have been a much greater burden to bear.

I’m lucky, I have seen much younger people than me on cancer wards. I have had sixty years of excellent health. Thanks to the expertise of the medics I can hope to have many more years.

In summary;

Get checked.

Make sure you know what is wrong with you.

Ask difficult questions and get the answers.

Battle through the chemo - it will end.

Eat!

Find something to be positive about.

Look after your friends but don’t pretend you know how it feels unless you’ve been there.

Trust the experts when they tell you what must be done.

Ask for God’s help. I did.

Robin Horsfall (The Wise Old Paratrooper)

04/02/2019.

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