Cancer 67
Posted on July 25, 2023 Leave a Comment
Some people have suggested that some of my blogs are a little explicit about what is going on with my cancer but I have always splurged when it comes to discussing thoughts and feelings. I may be a little open at times but I hope that helps people understand my experiences as a cancer patient. The stoma is a good example. The other day I had an ‘accident’. I was in Norfolk and had just sat down after ordering fish and chips (I am very careful with my diet, ensuring that my weight increases every time I attend for chemo) ewhen I sensed a smell. I checked and found that I had a leaking stoma. My first thought was that if my food was delivered while sorting this out then it would go cold. My second thought was that I need to sort this out urgently. Being a little more laid back than I was when I first got the stoma I had left my bits in the car. I had to go to the car, then to the toilet.
The problem arose because I was wearing my truss, which compresses my abdomen, but also compresses my stoma bag, and unless I constantly check how full it is I have no idea. Normally I surreptiously feel the bag to see how it is getting on. Yes, basically I fondle my own shit in a bag.
The truss had shit on it, and so did the inside of my shirt. I washed them out as well as I could, cleaned up and changed the stoma bag. I headed back to the cafe, got my meal from the counter where it had been kept warm, and ate it. It wasn’t the same though. I did not enjoy it as much as I should.
It is very unusual for the adhesion to fail. It has only happened three times since March. Given the pressure of the truss (shall we call it Liz?) and the strength of the adhesion, it just shows the power of the gut. I always thought the key action of moving food through the gut was peristalsis, but that is the action through the small intestine. Once it reaches the large intestine the contractions are called mass action contractions, and clearly there is no stopping them! They are supposed to happen between once and three times a day, often triggered by meals. I must remember to cut the number of times I eat, perhaps three times a day is sufficient. That might help with the ever-increasing number of kilograms indicated on the weighing machine here at the hospital every fortnight.
I still feel reasonably healthy. My side effects consist of a little diarrhoea, along with the wife suggesting I am a little more stylish and a little tidier than I was. People keep saying that I look healthier than I did when I was well, which I am not sure whether it is a compliment or an indication that I have spent most of my life looking pretty rough.
I know this thing is going to kill me, and I know I could drop any time from healthy to dead, but at the moment I am quite optimistic that I am going to last a good long time. I have ambitions. My NHS car is due in November, my book is out in January, and I don’t get my state pension for nearly seven years. I want them all.
My symptoms at the moment? The biggest one is tiredness. This seems to build up to a peak a few days after chemo is completed, but never really goes away. No doubt it is related to me getting up for several hours in the middle of the night. Never mind. It is manageable. My PICC line is a bit irritating. I keep wanting to scratch around it, and I am always fearful I am going to knock it and cause damage. It does mean I don’t want to go anywhere busy where people might knock into me such as a city – but then I never wanted to go to cities. Ghastly places. Also, I must take more care over eating (see above), but I have developed a sweet tooth. I also get aches and pains across my abdomen, which I suppose is where the psychological element comes in. I assume it is tumours growing and bashing around inside me, but of course it is probably the changes relating to the chemo. One significant change is the failure of memory. I forget words. I forget what I have read and seen. I forget people. But then, I always have done these things. It is just worse than it was, and it probably explains me being repetitive in my blogs.
What I don’t have, apart from memory changes, are any significant psychological problems. Look on, for instance, the MacMillan website and cancer appears to be all about psychological problems. My problems are body-related. I have cancer. I don’t need psychological problems as well. I will come back to this in a later blog.
Let’s face it. Apart from being stuck with chemo for three days every fortnight, three days that I wipe out in terms of achieving anything, I am doing pretty well. I am stronger and fitter. I can do a bit of gardening, go for short walks, drive for miles, and I am back to winding up the people around me. I intend to continue in this vein for some time.
Cancer 66
Posted on July 18, 2023 Leave a Comment
“The unexamined life is not worth living.” Socrates
Socrates had a huge impact on Western life and thought – and through colonialisation and globalisation the rest of the world. Not bad considering we have none of his writings, relying mostly on descriptions from Plato and Xenophon. I have never read Xenophon but I quite enjoyed reading Plato when I was trying to provide myself with an education after the failures of my experience of the comprehensive system (don’t get me going on that subject).
Socratic dialogues heped develop my critical thinking, and (I hope) I have used something similar throughout my academic life. I know I have irritated some people because I tend to disagree for the sake of disagreeing (I know, hardly sophisticated Socratic dialogue but it is fun), but it is genuinely an help develop clearer thinking if all participants act in the spirit of such dialogue.
The problem is that we now have a serious problem relating to critical thinking. It is just not allowed in some circumstances. Even in the universities there is less room for freedom of thought and speech, with the left often being the ones most guilty of trying to restrict the way we think. If I want to argue that climate change is not brought about by human activity I will be strung up. If I want to argue that eugenics has many positive uses I will be strung up again. And for a third time if I suggest colonialism did a lot of good. It doesn’t matter what I really think, just saying these things is enough to be sent to Coventry or worse.
This is dishonest and fundamentally dangerous for the progress of thought and knowledge, and an embarrassment for the Western intellectual tradition, whether the subject is race, sex, transism (is that a word?) or anything else. I prefer to rely on Western science rather than ‘indigenous knowledge’ – whatever that is – when it comes to the treatment of my cancer. I would rather take the drugs offered, developed over years of rigorous scientific endeavour, rather than rely on witchdoctors or shamans; or even some misguided ideas that we shouldn’t be upsetting minority groups or others by suggesting that Western science is superior to other modes of thinking.
It might not be politically correct to think that Western knowledge and thought are superior to other forms of knowledge and thought (I didn’t say all) but I hope to stay alive a little longer because of it. Part of the development of scientific thinking which led to my cancer drugs relies on the strength of thinking exemplified by Socrates, or at least Socrates as described by Plato.
Cancer 65
Posted on July 16, 2023 2 Comments
I am so very tired. I am in my third cycle of chemotherapy and fortunately people are generally commenting on how well I look, that I look weller than a well person. I must admit the side effects so far are not too serious. A little diarrhoea, feeling a little queasy now and again, and tiredness. Tiredness is the main side effect. I get up in the middle of the night every night, but that is nothing new. I seem to be at my worst a few days after the chemo – basically right now. I finished the chemo three days ago. Last night I had as good a sleep as I ever have (5-6 hours sleep?). I was only out of bed for 2-3 hours. But right now I keep nodding off. I want to sleep but it is daytime, waketime, and my body protests that it is not meant to sleep during the day.
On another matter, I have more or less come to terms with having a stoma, but I am missing out. As I have undoubtedly mentioned before I miss out on the (generally male) pleasure of sitting on the toilet, reading a book, and taking my time evacuating my bowels. What is left of my bowel, emerging from just below my front left ribs, evacuates itself at will. I have no control over it whatsoever. As someone pointed out to me, there is possibly an evolutionary reason for the pleasure received in evacuating one’s bowels. It is as important to keep oneself clear of waste as it is to put nutritious food inside in the first place. By having pleasure from evacuation it is ensuring that people freely and willingly empty their bowels. There is no doubt something Freudian about this, somehow relating to the anal stage of sexual development or something, but I don’t know what it is.
So I am missing out. I try to recompense myself by changing the stoma bag in the night. I take off the old one, clean up, and then sit with it open waiting and reading, and ready with wet wipes and dry wipes. If I am lucky then a good-sized turd will emerge from the hole in my abdomen which I catch and remove. It is hard to say why this provides some kind of pleasure. If you don’t have a stoma it is probably absurd. How can it be pleasurable to catch a turd coming out of your abdomen? I suppose it is that when the normal process has gone you take the pleasure where you can get it. It provides a little of the satisfaction of going for a crap. Seeing it emerge, controlling the after-effect of the function. Even feeling emptied. You know that feeling when you have been to the toilet. You feel better. You feel cleansed. That is what I feel after my experience. It is all very well clearing up a full bag but perhaps it is the nearness of the open experience that provides that limited satisfaction.
Don’t worry, it is a surprisingly clean process. With wipes, wet and dry, and my little black bags everything is hygienic. Where it becomes less so is in public toilets. It is usually manageable in a disabled toilet, though there is rarely a shelf on which I can put my changing kit. There is usually a bin though. The problem is in ordinary toilets, in pubs and such like. I can change the stoma in the toilet but there is rarely a bin to put the resultant full bag in, and I am not going to walk out of the pub toilets with the bag asking for somewhere to put it. I do have limits, you know. There are 170,000 people with stomas in the UK. We perhaps need to ask for slightly improved toilet facilities for when we are obtaining our little pleasures.
Cancer 64
Posted on July 11, 2023 Leave a Comment
Here I am, back in the chemo ward, the usual array of chemicals dripping into my body. This is only my third go of possibly 12, but it is a bit of a drag. The best bit is talking to the nurses, finding out about their lives, and the banter that flies around. Fortunately it is neither woke nor politically correct, so everyone is happy. Last week I found out that my baseline CT scan, taken 2-3 months after my operation, showed no further cancerous growths. With the chemo, perhaps they will continue to be kept in check.
One change that has occurred in the last week or so is that I have started dreaming again. Before all this I regularly had feature-length dreams, better than most of the Hollywood output, where I would often have some control over events, and I would sometimes wake up, go for a waz, go back to bed and restart the same dream. I was often at different levels of consciousness, from deep sleep to semi-wakefulness. During the latter I had more control. My favourite example of changing a dream was where a group of us were in the mountains, walking along, and someone came up behind me and drove a pick into my head, killing me. Somehow I managed to rewind the dream a few minutes, so when it approached the same point I turned round and gradde the pick as the person was raising it to kill me. Great fun.
After my operation I stopped dreaming, or at least stopped remembering them. Recently I started having dreams, but couldn’t remember them beyond the first few moments of waking. In the last few nights I have become a better dreamer again, exerting some control over my characters in the dreams, and remembering them for a little longer – though last night’s epic has gone now.
One study did show that those who have these lucid dreams have a more effective pre-frontal cortex, which possibly relates to the general evidence regarding higher levels of creativity, better motor skills, improved problem solving, and less anxiety. I don’t think it correlates with susceptibility to bowel cancer, though there may be certain third factors that link to both. Use your creativity to work that one out.
Cancer 63
Posted on July 7, 2023 Leave a Comment
I am getting into a routine with the chemotherapy. Yesterday the third cycle started with a visit from the district nurse to take bloods, clean out my PICC line and change the dressing on my arm. Tpday I do the 30+ mile trip to see the consultant who will or will not permit my treatment. I have the weekend to myself, then on Tuesday I go into the hospital for the first stage of chemo. If my drugs are ready then it will take less than four hours of sitting in a chair among other people with cancer. If my drugs are not ready it could take all day. I am then hitched up to my bottle. The PICC line is connected to the bottle wihich is suspended around my neck. I wear this for two further days, with further chemo drugs gradually entering my bloodstream. On the third day of chemo the nurse comes to the house to disconnect the bottle and clean my PICC line again. I am then free until the following Thursday, six fulll days. Then it starts again.
The most stressful times for me are when I don’t know what is happening. This is four days every fortnight. The first is both Thursdays when the district nurse comes. I don’t have a time of arrival. On one Thursday the nurse needs to arrive in the morning to take my bloods so they can be analysed in time for the consultant the following day. On the other Thursday she comes later to ensure my bottle is empty. I am sitting around waiting for the removal of the bottle so I can start to move properly again. The stress is not the nurses’ fault. It is in me, not knowing a specific time, wondering if I will be forgotten, as a cock up could cause a delay to the next cycle, or a problem with my PICC line. The third stressful day is seeing the consultant, getting permission for the next treatment. The fourth stressful day is going to the hospital for my chemo, not knowing if the drugs will be ready or whether I will have to hang around for hours, waiting.
How do I deal with the stress? On the Thursdays I have a combination of trying to sit in my chair and occupy myself with reading or writing. When the bottle is fitted I am constrained in what I can do for fear of knocking it out of place. On bottle removal days I can phone the district nurse service and tell them my bottle is empty, though that won’t necessarily mean I will be dealt with sooner. They do have other patients you know. On the consultant day there is no point in fretting, so I sit patiently and read a book. So far the experience is over in minutes – though I am a little worried today as I was expecting a phone consultation but I have been called in. At worst it is because there is terrible news (I live with that day to day, to isn’t as stressful as not knowing the time the district nurse will arrive), at best is because she didn’t see me last time and perhaps wants to get a clearer idea of how I am. Dealing with the stress when sitting in a chair waiting for drugs? I read, I write, I chat to the nurses and find out about their lives, which I always find interesting.
I don’t know why I am more stressed about these little things rather than ‘Oh my god I am dying of cancer and I will die slowly and painfully, leaving behind all my loved ones and not having a decent old age’, but not knowing when someone is coming to see me is very difficult. It is in normal life. I like fixed times for appointments. If the district nurse said she was going to turn up at 4pm I would be happy with that. It is the not knowing. I have never liked it when people turn up late. If we ask people to dinner and say 7.30pm I mean 7.30pm and not 7.32pm. At 7.28pm I will start to wonder where everyone is. It is not that I am mentally ill you understand, I just like punctuality, and chemo treatment is not known for punctuality. I like the known, not the unknown, and chemo treatment involves a lot of the unknown. They may be known unknowns, but I don’t know they are known unknowns, except in a theoretical sense, to me they are unknown unknowns. It is a bit like invading Iraq when your name is Donald Rumsfeld.
Dr Nigel Hunt 