Cancer 191
Posted on May 19, 2025 Leave a Comment
Having cancer does mean having pain, some of it chronic. I am having a lot of soreness from my stoma, and problems with my abdomen, that good old bag of cancer.
These chronic pains may be the cause of yesterday’s stupidity. I filled my pill box as usual. I have 4 drugs in the morning and 5 in the evening, mostly heart tablets and two antibiotics. I took my drugs in the morning and then, as I occasionally do, I took my food. This was a cheese souffle and cereal for breakfast, a sausage roll and half a cake for first brunch, then eggs and bacon in a Derbyshire oatcake for second brunch. After my early afternoon hot chocolate – plus small chocolate – I felt quite ill. This was unfortunate because it was calimari and Italian roast chicken for my evening meal. For the first time in history I handed over quite large parts of it to the wife. I felt proper ill.
Afterwards I went to take my daily pills and found out that instead of taking half of them in the morning, I had taken them all, so I had sort of overdosed. That explained why my guts were churning!
Ok, you might suggest that I had eaten too much and of the wrong things, and you would be right, but what worried me is that instead of filling up the pill box properly I had put all the pills on one side, and not noticed either then or when I took them in the morning. These sorts of errors could be dangerous.
Cancer 190
Posted on May 13, 2025 Leave a Comment
Today I started my 36th round of chemotherapy. It is late evening and I am sitting with my bottle of flourouracil dangling from a tube attached to my portacath and hence to my heart. It is dripping slowly into my bloodstream, and should continue to do so until Thursday afternoon, so I need to be very careful what I do in case I catch it, crease the tube, yank it out of my chest, etc. This is the 36th time I have had the bottle attached and that has not happened so far. Why do I worry that it will?
I have been feeling quite awful recently. I have felt that I have started a decline, the decline, that unto death. I have been unable to move around as much, it is getting hard to climb stairs. I weeded the gaden for five minutes and was knackered. Then I had a conversation with two good people. Within that conversation the word depression was important, the idea that depression can explain the physical decline in the ways I feel. Then the term endogenous depression was used, and linked with the possibility that it is caused by the drugs I am taking. Twebty four hours after the conversation (I am a slow learner) something clicked. I may be declining, but it may be reversible. If I believe it is depression that is caused by factors out of my control then perhaps I can do something about it. The negative associations with depression need to be turned round and made positive. I need to start thinking positively, Back to my favourite term, I need to get a grip.
When I returned from the hospital today, I felt as bad as usual, wanting to sit in my chair, feel sick and brood. Instead I put my pinny on and made the wife some arancini from the leftover risotto. Then I sat in my chair. She liked them.
Neuroticism is a rather loaded term. It is usually seen negatively. I get accused of being a neurotic, and it is true. I am neurotic. I can make a fuss about all sorts of things that make other people just raise their eyebrows or worse. It is different now though. When you have life-buggering-up cancer with permanent nasty treatment it changes the way you live. I don’t have time to be a miserable bastard in the ways I used to be. Those who know me may still say I am a grumpy git, but I am talking about my inner self, that bit I don’t show so often.
Perhaps neuroticism provides a kind of special insight into the way the self operates, particularly with regard to emotion, but also enables a deeper connection between the mind and body (not in the Cartesian sense of a link at the pineal gland, there is no physical versus mental, we are gloopy bodies. There is no non-physical mind. It is neural connections folks). Having this deeper connection may mean that the neurotic person can turn negative neuroticism into a more positive force, one that benefits the body, one that can keep you alive longer when you have a nasty illness, or can make you more effective in the world, simpy because there is this complex relationship with emotions, and emotions are our main drivers, not cognition or motivation. Cognition provides that veneer of intelligence. Motivation arises from emotion. If we have negative emotions, we are motivation in negative ways. If we have positive emotions, we are positively motivated.
I am not saying I am special, there are millions of neurotics out there. You probably know if you are one. It is a normal way of being, usually interpreted negatively, but perhaps that need not be so.
Obviously from the above I have not thought this through very well, but I reckon there is a book in it: “Positive Neuroticism: Getting a Grip on your Body by Breaking the Inner Woody Allen” Dreadful title as usual, but trying to write a book is a damn fine way of understanding a subject.
Cancer 189
Posted on May 8, 2025 Leave a Comment
It is a bit of a struggle at the moment. The main problem is my hernia, or hernias, as it feels like my abdomen is a sieve, with bits trying to poke out in various different places. I have a deep chesty cough and every time I cough it is a) painful, b) feels like my abdomen will expode, c) impossible to hold in using my hands. I never realised that my abdomenal muscles are stronger than my arm muscles. It might have changed the way I did physical labour. I am having to restrict my food now, even though I have spent the last couple of years focusing on a couple of comments made by nurses regarding cancer patients not restricting their diet. I am making a real effort to lose weight. I have lost 7 kilograms over the last four weeks, so it is a start (Oh yes, I had put 6 kg on in the previous few weeks). My new line is also problematic. I have had every central line available, and my body has found ways to rejet them. The current one, the portacath, is also problematic, not just as already reported about being the wrong length but also because the surrounding skin is very red and sore. It shouldn’t be, but I suspect my body is trying to find a way to reject it. Reject the cancer you foolish body, not the means of treating the cancer.
We went away for a three nighter to North Yorkshire, returning yesterday. I slept little, moaned (literally) about my abdomen, took too many painkillers (not too sure the ‘killer’ element is a true description), but had a good time. Now it is back to reality. I am writing in the early morning of Thursday. I have my blood test at 7am, and then tomorrow I see the consultant, and all being well treatment on Tuesday. Back to the slog. The analogy of the moment is the eternal war that I cannot win. I am forever fighting battles, sometimes difficult and painful ones, when I know I cannot win the war. It is simiar to the German soldiers who realised the war was lost the moment Operation Barbarossa took place. Nearly three years later Germany was defeated, but from the moment of the invasion they could not win. I feel the same. The obvious next thought is why bother? The end result will be the same. I am dead. All this fighting is in the end for nothing.
Or is it? Come on, it is not as though the last couple of years have been miserable. I have a good family and good friends. I have travelled to new and not so new places (not out of Europe, but who needs to travel out of Europe?), read books, written books (ok, only one published in this time but I am writing, albeit slowly, and generally lived a fulfilling life.
All life ends, though it does profoundly affect one’s mental state knowing that it is foreshortened.
Sod it, I’ll get my battle axe and crack on.
Cancer 188
Posted on April 29, 2025 Leave a Comment
Well, that was an unusual day at the hospital. It was longer than expected. I arrived at 0730 and left at 1630. It started well, I met with a lovely ex-colleague from Nottingham and we had a good chat about life and books. It could have gone on much longer – I would have preferred that, but I had an appointment in a cancer ward. I arrived on time and went through to the ward on time, but my drugs had not arrived. This is quite a common occurrence. Pharmacy hadn’t mixed their poisons. They eventually arrived two and a half hours late but in the end that didn’t matter, I was elsewhere.
My new line, my new portacath, is not working properly. I have a reputation in the ward for the way my body disturbs all these lines – and I have now had every type and they all go wrong. It is as though my body is rejecting them. I am asked several times a day whether I am allergic to anything. I always say no, but perhaps I am allergic to cancer lines, whether PICC, Hickman or portacath. Perhaps that is what I should answer when I am asked the same question in a restaurant or pub.
With the portacath, a needle has to be inserted through the skin into the device. It hurts like a needle, just a pinprick, but when they couldn’t draw blood, the nurses thought there was a problem with the needle, so they tried four needles, one after the other. I won’t say it was the needle in the haystack, which was really a piece of straw, that broke the camel’s back, but it was close.
There was a need to check the line, so I was sent (by wheelchair to make me feel like a cripple) to the same room where I had the portacath fitted just over a month ago. I lay on a bed with an x-ray device showing my chest and a dye was injected to show the route of the line. I asked for an explanation of what was going on and it turns out the line is a little short. It should reach the large main vein as it enters the heart where it could be slightly loose. Instead it stops at the entrance where two veins meet and is less loose. It has myelinated – very quickly I thought – and so is – just like my Hickman line, my previous failed line – functioning with effectively a one way valve. Things will go in but not come out.
My options were to leave it as it is as the drugs go in fine, or to operate to sort it out. The surgeon did say the nurses will experience stress when not able to draw blood. I pointed out that my stress levels will be higher having another operation when I haven’t yet forgotten the last one (yes, it is like women remembering childbirth – probably, I am not a woman), so it has stayed as it is.
Except now I have a new level of permanent stress as at some point the line may fail and I will not get my treatment.
When I returned to the cancer ward my drugs had arrived and I could be treated. The problem is I have a longer treatment than most people so I was there for the afternoon.
Still, I had lots of positive interactions with people. There is a little of Oscar Wilde in the situation. I have these line problems, I am around permanently due to my terminal status, I interact with the staff,. I have become a prominente, high-value prisoner.
It was pointed out that I have a tan. I was suspected of being in the sun (I am not allowed in the sun). I was told I must use sunblock. I said I have never worn sunblock. I was told I would be back in two years, being treated for skin cancer. I said that I would be dead in two years anyway. I thought it was funny, but the humour wasn’t reciprocated.
I am wearing my bottle of flourouracil. On Thursday, I get to remove the needle myself, at home. I will try to draw blood, but will probably not succeed.
Cancer 187
Posted on April 28, 2025 Leave a Comment
I had a good night last night, one of the best. I slept from before 2200 to around 0600, and only got up for the toilet 3-4 times. That is one of the best sleeps since diagnosis.
I am also a lot better from my cold. Two days ago I was thinking, is this it? I felt so bad. Now I am nearly back to normal.
This is how dramatically mood with cancer can change. Two days ago I thought I might not survive, now I am back to my normal optimism, that I can keep going for a good while yet. It is a little wearying having such massive mood swings relating to the imminence of death, something that never happened in pre-cancer days. Still, just one of those things you have to put up with when you have cancer.
This morning I had a CT scan, and now I am waiting to go in for an interview on Radio Derby. Life cracks on.
Dr Nigel Hunt 