Sleepless after chemo but NHS works like a dream

This article was first published in The Yorkshire Post on Tuesday, 17 December 2024. It is one of a series of comment pieces that are running in the paper on cancer and stroke matters.

Exhaustion is something I have got used to after my haemorrhagic stroke in September 2019.

That constant feeling of lethargy is something I have come to accept as the norm, but this tiredness from my chemotherapy treatment for stage 4 prostate cancer is altogether different.

I find that I can’t focus on anything. I try and relieve my restless nights and insomnia by watching late night/early morning TV. It’s chock-a-block with shopping channels. I switch on the TV and am captivated watching some guy demonstrating that you can soak-up a bucket full of water with a shammy leather without spilling a drop. But why would you want to do that? Who watches these programmes in the early hours of the morning save for saddos like me?

I’m now greeting the dawn with the sense of having been on a long night shift. It’s beautiful watching dawn break and the first arrival of a family of squabbling starlings descending on our bird feeder for breakfast, but unlike them I’ve just been wandering aimlessly around my home in the dead of night.

I can’t concentrate either. I can’t seem to focus on anything. My brain is all over the place and so are my sleeping patterns. I’m like a fish aimlessly swimming the oceans not really knowing where to go. Although I’m sure fish know exactly where to go. I start reading a book and five minutes later I’m asking myself what is the point. I can just about focus on reading The Yorkshire Post. It’s easy on the eye because it’s well designed and written.

I also suffer from brain fog and short-term memory loss. I can be in a conversation with someone and then forget their name which is somewhat embarrassing. And since my stroke I can equally well hear the person I am talking to as well as someone on the far side of the room. I should have joined MI5.

I then start to feel sick. I check the list of side effects on the leaflet I’ve been given by Airedale General Hospital’s Haematology & Oncology Day Unit (HODU) and, yes, it’s normal to feel sick. That explains why I have been given two types of anti-sickness pill to combat the feeling.

But in ticking the sheet I’ve been given to record the after-effects of the chemotherapy and hormone drugs, to report back to NHS staff at my next hospital appointment, I can’t figure out whether I should be ticking the mild, moderate or severe box.

The chemotherapy treatment coupled with the hormone tablets and injections I am receiving give me a tingling sensation in my toes and fingers and cramp in my legs. I feel like my body is being taken over by an alien being. All in all I feel pretty grungy, probably best to lie down on the sofa in the living room and try and get some sleep rather than disturbing my wife’s sleep yet again.

I’m well aware that blokes don’t have the same pain threshold of women. As my late mother-in-law Patricia used to say, “if men had to give birth that would be the end of the human race”. Let’s be frank we men are wusses. But I don’t want to appear to be completely pathetic.

The dual hormone treatment to prevent the cancer cells establishing themselves on my bones, lymph nodes and chest cavity are also giving me hot and cold flushes every four hours.

The flushes start from the chest and quickly rise through my upper body to my neck and head. I’m dripping with sweat. I feel I am about to erupt. I disrobe to try and cool myself down. Barely an hour later come the cold flushes ?and I find myself putting back on all the layers and more I had on before the hot flushes. It’s all very unsettling

Having questioned why women I shared a room with on campus at Leeds Beckett University had the window open in the middle of winter, when it was minus 5 degrees C outside, I am now apologising to them for being such an ignoramus about the menopause. I am going to The British Menopause Society to find a solution to alleviate effects of my hot flushes. The irony of a man contacting them is not lost on me.

However, despite all the side effects of my prostate cancer treatment, I have one thing in my favour. I implicitly believe that I am getting the best advice and the best care. The NHS saved me from a stroke in 2019 and painstakingly put me back together again – when I couldn’t stand, walk, feed or wash myself - and they are doing the same for me right now. I have a million and one reasons to be grateful that we have a free at the point of delivery health service.

Robert Minton-Taylor, 76, works in a voluntary capacity as a public governor for Airedale NHS Foundation Trust, a visiting fellow of Leeds Beckett University and a 'lived stroke advisor' for the West Yorkshire Association of Acute Trusts.