Cancer 193
Posted on May 31, 2025 Leave a Comment
I have always tried to be my true self with these posts, showing my thoughts and feelings as they are at the time of the post. This is why there are plenty of downs as well as ups, along with the confusion that is the way I am often thinking and feeling. The confusion is greater than ever. I had a phone call planning a meeting with a radiographer, so it appears I will be having radiotherapy when I get back from my holidays. This was mentioned as a possibility before, as treatment for the lump on my stoma. It is a little scary. I understand radiotherapy can take place every day for two or three weeks. Oh what fun that will be, probably combined with the new chemotherapy.
How will it all make me feel? I dont know. I have been lucky so far. I have not been confined to bed or felt sick beyond the first day of chemotherapy, but who knows for the future? And will it be worth it? How long do I have left? Now the decline has set in can it be stopped? Will I respond to a new treatment? If I do how long will it be successful for? I can’t imagine it will last as long as the previous treatment (two years).
Over the last few weeks I have felt the decline. It is in odd things. My legs ache. I am sleeping through the night more often (for most people that would be a good thing, but dying cancer patients usually sleep longer). I can’t walk as far as I could even a few weeks ago. I have a general feeling of malaise, a feeling of dying. Obviously I don’t really know what that is as I havent been here before (except in hospital just after surgery, but I wasn;t all there then), but it just feels like dying. Perhaps it is my neuroticism, perhaps it is my imagination, and perhaps I will spring back on my next blog and say what a load of nonsense I have been saying – because underlying it I cannot remove hope and optimism.
As I have said repeatedly, I don’t fear death, I fear dying. I fear dying in pain. If there is something about death I am not too impressed with it is that I would like to live longer. I am only 62, and I could have had many more years of happy life, more years of productive life, more years with family and friends. This is what bothers me more than most things. I know that once I am dead it won’t matter because I wont exist, but while I do exist it does bother me. I won’t let it get me down though, while I might have my moments of down, the bugger is not going to keep me down.
And back to my holiday. It is a nice warm day in Craster and we are off to buy some kippers – assuming I can manage to walk the 200 metres to the smokery….
Cancer192
Posted on May 24, 2025 1 Comment
Well, it was bound to happen. After spending the last couple of years with my head firmly buried in the sand regarding the performance of my little lumps of cancer, my claims about their hopeless performance, given that the cancer is meant to be aggressive, they are now starting to show their true colours. I saw the consultant today, and instead of the usual boring news regarding no change, my latest scan has shown that the little bastards are growing. OK, the biggest is still under 3cm, but the consultant appeared confident that we are entering the next stage, the stage of cancerous growth, and my current treatment is failing.
At the outset of all this, I was told I would have access to two treatments: this first-line approach that I have been undergoing for two years, and then a second-line approach, which would be the last treatment offered. It looks like I am going to be moving onto the second line treatment. The growth next to my stoma which is causing some problems may also be related to the cancer.
There is going to be a meeting next week to examine my situation. I won’t be there. I will be in Northumberland, but they will look at the stoma and see whether it should receive radiotherapy, and whether I should change treatment. I will find out what is happening in the middle of June (and no, I am not bothered about finding out earlier. It won’t change anything).
I had intended to take a break after next week’s round of chemotherapy, but this has messed everything up. When I move into the new chemotherapy regime, I won’t be taking a break for a while – or ever, so after discussion, I decided to take a break now, only a short break, as now the cancer is growing, it may continue to grow while I am off chemotherapy. The break is three weeks, effectively less, so instead of going to Denmark, we are heading north, taking in a decent hotel and then self-catering in Northumberland and probably the Lake District. This may be my last holiday longer than six days (assuming I can still get a six-day break when on the new treatment), so I want to go somewhere with good food, friendly people and decent scenery.
How do I feel about all this? I knew it was going to happen, but it was never going to happen now; it was always in the future. I have been living with everything being stable for so long that I carried on thinking it would continue, avoiding the truth, but enjoying life. Will the treatment work? Who knows. It might not work at all, it might work for a short period, or it might work for a longer period. In reality, it is not likely to work for very long. How do I feel? Daft question. I am not ready to die. I still have things to do, books to write, and people to speak to. As I have repeatedly said, I do not fear death; I fear dying. I don’t want pain (though I am living with it most of the time), and I don’t want to turn into a brainless blob, slobbering on a bed, surrounded by people who want it all to be over.
Choices, choices. They are starting to disappear.
Oh yes, how do I feel? Fine thanks; occasionally a bit more blubby (get a grip you big girl’s blouse), but still positive. My bloods were reasonably normal, and my cancer marker has not gone up, so my body is still fighting. We shall fight them on the beaches and all that.
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.
Dr Nigel Hunt 