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.
Cancer 162
Posted on December 18, 2024 Leave a Comment
I feel a bit better than before. I am still up in the middle of the night, I am still tired, I am still changing my stoma, just the normal things in life, but I don’t quite feel that I am going to be dead tomorrow. Life is a roller coaster, though I have never actually been on a roller coaster. When I used to go to Alton Towers there was just a garden and a model railway. I feel negative one day, positive the next. Illness really gets me down, though I am aware that things change quickly.
It is as though my overall control mechanism is breaking down and I am genuinely living day by day. I can’t think that tomorrow will be a better day. Boring, I know, as an observer. Not that pleasant living it.
My hernia is painful. I don’t know whether it is getting worse, but it feels it. I don’t know whether the NHS will try and do anything about it, whether I am worth it. Probably not, but it would be ironic to die of hernia complications when I am riddled with cancer in my abdomen. That would teach them.
Cancer 161
Posted on December 17, 2024 Leave a Comment
It is very tiring. I haven’t slept much for four nights and I am very overtired. The stoma is working overtime and is sore, despite using the honey rings. We are staying away and the bed is too small, so I end up on a chair in another room. Ok, the chair is a reclining chair so it is reasonably comfortable, though again a little small for me. I have fallen asleep in it a couple of times.
Last night I had dreams of a terrible taste. I think it is a real taste from memory but I can’t name it. I know that if I can think of the right word it will settle me, but I can’t and so the taste is overwhelming. I don’t think it is chemo-related, as it is an old memory of a taste. The word is on the tip of my tongue but I can’t grasp it. It has bothered me now for 24 hours.
I am ill. It is a bug. I keep getting bugs and I am getting run down. I can’t help thinking of death, that this is the decline. Yesterday I had a surreal moment of happiness in my decline, that it was all right to die. The worrying thing is that this feeling is apparently quite common in the dying.
I know, I have been here before. I may sound a little obsessed, but that is probably because I am a little obsessed. Just try it, sitting there with dangly bits coming out of your chest, being pumped full of god knows what in order to slow the growth of a monster. It gets to you at times.
Dr Nigel Hunt 