Cancer 167
Posted on January 7, 2025 Leave a Comment
I don’t know where I was the other day but I heard Don’t Fear the Reaper by Blue Oyster Cult, as far as I know the only song they ever did. I quite like the song. It fits with my usual view of life and death. Unfortunately the other day it didn’t. I had quite an emotional response, to the extent of tears. For a horrible few hours I did fear the reaper. I didn’t want to die (I still don’t but the emotion has gone). I wanted to live, to keep living, to live a normal lifespan, to not miss out on all the things I usually say I won’t miss out on because I am dead.
For those hours emotion ruled and cognition failed. The rational man fell apart.
Fortunately it did ony last a short while. It did get me thinking about how that way of thinking or emoting might be the main way they live their lives. I feel sorry for them. I couldn’t live like that, certainly not for long (I now, I don;t have long anyway…..). much prefer the positive outlook. Enjoy life while it lasts.
The other problem I have been experiencing over the last few days is pain. My stoma, my abdomen, and then some referred pain in my shoulder that presumably arises because I am trying to get comfortable. It is keep me awake at night (nothing new there). I am still hopeless at taking painkillers. I have always avoided them, thinking that pain serves a purpose. I know that I should just take whatever I need but I still want to feel what is going on inside me, particularly the abdomen and my hernia, which I think is going to explode at any point (I know, they don’t explode, but that is what it feels like). I have to control my coughing. The hernia belt is not the best. I regularly buy them cheap on Amazon because I don’t like the NHS ones, which may be better for support, but as I have said before, I get far more stoma leaks wearing them because they press on the bag.
When I cough I put my hand on my abdomen and try to cough gently. It can be difficult as I usually have a lot of phlegm – the constant cold of a failing immune system.
These aches and pains keep me awake at night. While I can manage on five hours, I am generally having less than that. I lie in bed and have pains so I get up and get tired. I lay in yesterday morning until after 9am – and what did I think? Oh, is this the start of the next stage of cancer, just lying around doing nothing? So I got up.
The other thing that happened the other day was that we went to the theatre to see Swan Lake. It was a matinee performance at Buxton because of my tendency to turn into a pumpkin at 9pm. During the break I wanted an ice cream (don’t talk to me about diet, my health care people say I shouldn;’t diet), so I had to walk through crowds. That is not an idea with stoma, hernia belt and Hickman line dangling. I was terrified someone was going to bang into it so I ended up being the aggressive one, not too aggressive I hope, holding my hands and arms across my vulnerable chest and abdomen and not letting anyone near. The ice cream wasn’t worth it. It was from Leeds rather than one of the excellent ice creams we have here in Derbyshire – especially the one from Monyask made with raw milk. So what if it is February?
There are always new experiences with cancer, though I don’t recommend trying it.
We are going on holiday, back to the Netherlands. I have started some new research, not serious research. I have no intention of publishing or doing anything else with it. That career is over. I am looking at the history of the Netherlands in the so-called golden age, in relation to the paintings done in relation to the various wars, the science and the culture of the time. I will be rubbish at the paintings side of things with my colourblindness, but I don’t care. How did I get to my age knowing so little about the Netherlands?
Talking of which, I have let my British Psychological Society membership lapse, so I am no longer Chartered or a Fellow. I have lost lots of letters from my name. I am going to let everything lapse except my Fellowship of the Royal Historical Society. I would rather be a historian than a psychologist. I should have though of that earlier. Never mind.
Cancer 166
Posted on January 3, 2025 Leave a Comment
I had a short spell of unhappiness yesterday. We have had the kids around for a week or so, eating the wrong foods, talking nonsense, inventing a politically incorrect game that I had better not describe as it involves taking it in turns to choose a country to conquer, with reasons – basically a form of recolonising the world. I really won’t say which countries we chose. It is all right for the others but I have to play these games sober nowadays.
Anyway, the last of them left yesterday. I had spent several days almost forgetting that I have cancer. I did have a bad day while they were around, just the usual post-chemo illness, but it was temporary, a few hours at the most.
After they left I realised that I had to flush my Hickman line. I do it every Thursday, and every day while we have had visitors I have been doing the usual tasks and bearing the usual pains, but yesterday brought back the realisation that I am gradually dying and that I am sick of doing these things. I really didn’t want it. I didn’t want the procedures, I didn’t want the treatment.
Nevertheless, I got out my bags of goodies, loaded the syringes and did what I had to do. It doesn’t help that the line still isn’t working properly. It works for putting materials (chemo, flush) in, but I can’t get anything out (blood). If it stays like this then the next time I need to get bloods someone will have to find a vein. As it took nine attempts across both arms last time I am not looking forward to it. They will need to put in a new line or I might jump off High Tor.
Except I won’t because I am not fit enough to walk to the top.
Cancer 165
Posted on December 28, 2024 Leave a Comment
I watched the new Christmas special of Outnumbered last night. It wasn’t very good, no one can joke anymore in our sterilised woke society. The Gavin and Stacey Christmas special also missed the point. Nevertheless Outnumbered had a cancer theme in it. My comment at the start was that this is a good thing, we should joke about cancer, but in the end it did upset me a little. I am not sure why, I am happy to joke about cancer, I am happy to hear jokes about cancer. Perhaps it was the family thing, when the whole family know and react. It is one of those points where my cancer is not mine, and I recognise that there are a whole lot of complicated reactions going on in the people around me.
Buried in my own feelings, it can be difficult to recognise what is happening in others. We all, including me, have the idea that it is worse for me – which of course it is (see what I mean?) – but others see how I am, think about the future, and have their own pain, which I often only see inklings of, just now and then, partly I assume as protection for me and them, partly because people don’t want to make it worse for me, partly because I am not the person they want to talk about it with, partly because I need to be protected, partly because they need to be protected, partly because we all want to get on with life, not to forget the cancer but because getting on with life is best reaction. There is little point in any of us being miserable about it.
Well, that was egotistical, thinking that others are thinking of me. Most of the time I don’t know what people think, though with a few I have an idea.
There is also the problem of time. If I had a quick illness and dropped dead then people’s thoughts and emotions go through a process, but because I am continuing to live there is cancer fatigue. I am pretty sure most people aren’t thinking, “I wish he would hurry up and die” but such thoughts go through my head.
Sorry to disappoint folks but around 15% of people in my condition live 5 years or more and I think I intend to be one of them. Don’t worry, only three more years to go!
Comedy may be dead, but I am not.
Cancer 164
Posted on December 26, 2024 Leave a Comment
I am awake – as usual – in the middle of the night. I had a good 2-3 hours sleep at the beginning, since then I have been reading and changing my stoma – multitasking, just like reading on the toilet but form the comfort of my settee. Christmas Day is over. This is the first time I have been on chemotherapy over the break. I was in hospital on Tuesday, on the chemo bottle until the afternoon of Boxing Day. Fortunately our Christmas is at the weekend when the kids come up, though the weekend after chemo can be a little unsettling. As you ask, my main meal on Christmas Day was ham, egg and chips. A fine combination. Pig and eggs go together so well, ham and egg, bacon and egg, sausage and egg. I am so glad I am not a vegan or a vegetarian.
After this treatment, ie once I disconnect the chemo bottle later today, I am on a treatment break for six weeks until the middle of February. This means, I hope, that my general symptoms will reduce, that I will get more energy, that I will be able to walk more. It won’t affect my diet as nothing seems to affect my diet apart from the one day a fortnight I am at hospital with chemo, and even then I seem to be getting a little better at eating in the evening. On the negative side, taking a break makes me fear the cancer will take the opportunity to grow. After all, it is meant to be an aggressive cancer, though so far it has been about as aggressive as the Italians in World War Two. I hope it doesn’t turn Japanese.
I have now had 30 rounds of chemotherapy, which sounds to me like rather a lot. I havre brecome very familiar with the hospital, the cancer day ward, and the nursing staff (lovely folk). My attitude when I go for treatment is that the day is wiped out. Whatever my appointment time (it varies from 0930 to 1130), I arrive about 0730 to get a parking space in the crip car park, sit in the awful restaurant until around half an hour before my appointment, go into the waiting room and generally get called through early. I sit patiently in the chair being fed my poisons, reading and writing, chatting to the staff and sometimes the patients, and don’t tend to get restless until the final stages when I am desparate to get home, wehich I attain at best around 1500 and at worst in the early evening.
I still drive to hospital, I still walk when I am at the hospital. I know I have deteriorated over time – it is a slow process but discernible. I do worry that there will be a time when I can’t drive, or I can’t walk, when I lose my independance. When I get to that stage then please feel free to come round, put a pillow over my face, and shoot me in the head – preferably cleanly. I think the wife might appreciate that too (shooting me I mean, not her).
When all this started life expectancy was given as two to two and a half years. The statistics are not reliable as every person’s cancer is different (different genes, different environment, etc). Still, I like numbers so this means that at some point sonn I will be passing the point at which around 50% of people with this cancer are dead. On the plus side, 50% as still alive, so I will take the glass half full please. I am surviving reasonably well so far, and I like being at the extremes of normal distribution curves so I am looking forward to getting into the last 5% of the curve, which means at least another three years of these blogs. Sorry.
It is not all good of course, I am thinking about flying for the first time since diagnosis, possibly to Greece to look at all the piled up rocks of ancient civilisations. As I have been thinking about it over the last couple of weeks I am getting nervous, more negative about flying. I will be out of control. Something mayu happen at the airport or in the plane, or at my destination, and given that I do feel I have deteriorated a little then I fear that loss of control. No decision has been made yet. Perhaps I will feel a bit better in a week or two (come on treatment break, work for me). If we don’t fly then the second choice is driving. Perhaps France – but then France is closed in January, they are very old-fashioned, and I don’t like having to wait until 1930 to eat in the evening. It is too late for me. So perhaps the Netherlands? We have talked about staying around Gouda and exploring the art connections – and there is a WWII concentration camp nearby, a museum of course, not still used.
This would be a third trip to the Netherlands within a year. It may seem an unusual choice but it is easy to get to (apart from crossing the sea, which is hell), good food, friendly people and a more sensible language than French. Or perhaps we will go away in England. Perhaps I shouold just get over this neurotic nervousness and get on a plane. I have been told I can take all my medicine supplies, carry extra bags, be transported to the gate, etc, so why don’t I get on with it? Perhaps around Easter when it is warmer.
Cancer 163
Posted on December 19, 2024 Leave a Comment
My Hickman line is blocked. I couldn’t get blood out this morning. It would flush happily so stuff goes in, but not out. Effectively a one way valve. I am now in hospital. They too have not managed to clear it – similar yechnoques
Apparently I can still have chemo next week as stuff goes on but not out
This is assuming my bloods are ok. I have had problems with veins since I became ill and today was no exception. Most people tried, and eventually on the ninth jab some blood emerged. Results tomorrow.
Nine jabs and lots of poking and twisting to get the blood. I feel like I have had sex with a hedgehog – not that I have had sex with a hedgehog, but I imagine it feels like this.
My Hickman line is probably broken, so will need replacing. Another cut into my jugular and a line poked into my heart.
I am home now.
If you haven’t tried cancer you should, it is lots of fun.
