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.
Cancer 62
Posted on July 4, 2023 Leave a Comment
Another successful break while undergoing chemo, or at least I hope so. It has been suggested that I am trying to do too much, which is probably true and might explain why I am incredibly tired all the time, my legs ache as though I have walked for miles, and I have actually slept more than the best-normal 5 hours for the last couple of nights. I have walked around Roman forts and National Trust houses, around Hexham and Corbridge. It is suggested that I ought to relax at home at the weekend, put my feet up, read a book (I have finished three books since the beginning of July and it is only the 4th today), and not go roaming around the countryside. The problem is I don’t want to put my feet up. I will be a long time dead; what is the point of resting before I get there? I want to run around as much as possible, do things – not necessarily exciting things like climbing Mount Everest, Formula One racing, playing cricket for England or flying off into space, the local cafe with a little walk will be fine thank you, but I do want to be active while I can. Perhaps I do have years rather than months, but I don’t know that so I want to be active. I know I am sore. My abdomen feels churned up, and not just because I have eaten too much cake, too any beef and gravy sandwiches, too much smoked fish over the last few days. It is a little painful. My stoma has had a couple of bouts of diarrhoea. Behaving unlike myself I will spare you the details of that. It is all a bit messy. I worry that it is time for the downturn, that in a week or two I will be confined to bed and morphine, and in a month I will be food for worms. It is the neurotic in me, or is it the realist? As I said in the last blog I have had this craving for life in the last few days. If I was a different person I would say life is unfair, that I haven’t had enough, though I am fully aware I have had a lot more than many, both in terms of longevity and in terms of perceived quality of life. These feelings fight within me. Acceptance and rejection; awareness of mortality and screaming kicking rejection of mortality. OK, I will sit still and get on with my book. We have a long drive down through the Pennines tomorrow. It will be beautiful, rain or shine, wilderness and some of the finest parts of the country. I know a little pub that does steak and kidney puddings, a fine diet for someone with bowel cancer who is on chemotherapy. They also do a nice black pudding starter….
Cancer 61
Posted on July 3, 2023 Leave a Comment
Does it make it easier or harder to know that you are dying? Even though I do not know how quickly I am dying, I do know I am. I would like to think it is easier, that I am pretty certain that I won’t be facing the real decay and distress of old age, but the reality is, like most people, I crave for more life. I desperately want to live. I dream about a miraculous cure, that the consultant is going to be astounded, saying that she has never before seen such cancer completely disappear. I walk around, I look at the world, I interact with people, and I want more of it. I like it. I thrive on it.
It does make it harder knowing you are to die. When you are young you are immortal. As you age you recognise mortality at one level, you begin to recognise that one day you will die, but because there isn’t a date, we are not on some sort of Logan’s Run, it still remains out of sight and out of mind. I know I don’t have a date, and I can’t predict what the date will be, but I feel like I have a date. It is a terribly strong feeling, one that I cannot remove or ignore.
As I did before I received my death penalty, I do things, I look forward to things. The doing of things does not gain an intensity I used to think it might with a death sentence. Today I went around the Roman fort of Vindolanda, south of the Wall. I enjoyed it much as I would have done a few years ago, though I am far less fit, needed to rest regularly and could not get around the whole place.
It is more painful looking forward to things. We are making plans for whatever future there is. I want to go away as much as possible. I cannot practically leave the country but there is a lot to explore in the country. Since I have recovered from my operation we have been twice to the Yorkshire Dales, to the Highlands of Scotland, and are currently in Northumbria. For the future , we have booked trips to Norwich (a city break? Me?), Shropshire and the Pembrokeshire Coast (the one original National Park I have never been to). I have these trips to look forward to, along with my book coming out in January and a new car (my first ever new car) around November. I have no idea whether I will be alive for these things and, as I have said before, if I am not then it really doesn’t matter as I will know nothing about it.
But I am alive at the moment. I still have those hopes and dreams we talk about in such a throwaway manner when we are alive in a normal way. I want those trips. I want that car. I want to see my book.
Cancer 60
Posted on July 1, 2023 Leave a Comment
We are on holiday again. Every fortnight, immediately after my three day chemotherapy, I get a six day period where NHS staff are not poking around, shoving things into me, pulling things out, and making me sit quielty while a chemical mix is dripped through my body, hopefully attacking the cancerous growths and showing them what for. We like to use these six days productively so we are in a cottage on a farm in the middle of nowhere in Northumberland, one of my favourite counties.
On the way up we listened to the Today programme, where there was the usual talk about problems with the NHS, and how the government are going to train more staff to deal with the current shortages. That is all very well, but the problems run much deeper and wider than that, and we are in need of a new Beveridge report. In 1942 William Beveridge, a social economist, published “Social Insurance and Allied Services” which was a blueprint for social policy in the UK after the war. He proposed three guiding principles; 1) a revolutionary time in world history is a time for revolutions, not a time for patching, 2) the five giants of reconstruction are idleness, ignorance, disease, squalor and want, and 3) social security policies should be achieved by cooperation between society and the individual. Beveridge did not approve of means-tested benefits; instead, everyone should contribute and everyone should benefit.
The report provided the basis for the welfare state the Labour Government set up just after the war, only part of which was the NHS. The rest included various benefits such as family allowance, National Insurance and an increase in pensions.
We are in trouble with the NHS, but it is not a problem confined to the NHS. It is a much wider problem, which is why we are in need of a new Beveridge Report. Within the NHS there is a lot of disquiet about pay and conditions. Equipment is expensive and sometimes insufficient for need. Many hospitals are getting older and in need of updating or replacing. Management systems are top heavy. There is inevitable waste in such a large and complex system. We are treating so much more than we were when the NHS was set up. The sophistication, and the price of sophistication, is incredibly high, and we should be examining the problems more widely to see what we can do about it.
In the Guardian yesterday a consultant proposed six changes to the NHS: link primary care to social care and clarify the role of GPs, agree national standards (levelling up), change attitudes to the caring professions, improve preventive health, an effective obesity strategy (starting at school), and tackling the gap in mental health services. These are hard to disagree with, and they do draw on those wider problems, but how do we solve them? This might take a few blogs.
Perhaps we need to begin at the beginning, with children. We are bringing our children up in dangerous ways. I obviously do not mean everybody, but many of us. We are not enabling risk, we are mollycoddling, and we are providing dreadful diets. It is ironic that in these days while we think we are protecting children by not allowing them to have proper unsupervised play, whether that is a bike ride to the unknown, climbing trees or playing football unsupervised by parents or teachers, etc, we are actually endangering them. We stop them from exercising properly, which obviously has longer term risks for physical health and just learning about risk generally. Boys and girls are different. I know it is not trendy to say so, but they are. A big help for children would be for junior school boys and girls to go back to separate playgrounds. Boys and girls at that age do different things. Girls learn about social interaction (they are the ones who hold society together throughout their lives – controversial but true) and they learn those skills in the vicious land of the playground. Boys don’t care about social interaction, they want to run around and learn to use their physical energies effectively, again in a vicious playground, and in a social way. Give them a football. At junior school most boy played football at least three times a day, in each break (and after school and weekends – unsupervised by parents). It expends the excess energy boys have, it enables them to be rough with each other, and it teaches them social skills (the rules of football). It has the added benefit that they will be more physically tired in the classroom which will enable them to concentrate more on tasks instead of fidgeting and eventually being labelled with some so-called mental health syndrome. Boys and girls play differently. Let them. Stop thinking equality is about sameness.
What is there to say about children’s diets that has not already been said many times? It ranges from not being provided with three good meals a day through to the ubiquity of fast food, unhealthy snacks, and links with lack of real exercise. We used to have breakfast before going to school, eat school dinners, and return home to a properly prepared meal, which has implications for the nature of the workforce and the social structure of the home (I will save that for another time!). Now breakfast is often skipped, unhealthy snacks are eaten at all times of the day, too many inappropriate choices are provided at lunchtime, and there is not always a decent meal in the evening. Part of this is due to poverty (hence the need for wider action), part is due to ignorance (people don’t learn to cook), and part is due to the availability of over-processsed ‘food’. Developing bad eating habits in childhood leads to obesity and later health problems. It is not a sophisticated argument. We all know it, but we don’t do enough about it.
To return to mental health and the vicious land of childhood. Our children are not allowed to learn naturally about interactions with other people. Calling each other names is frowned upon, language is regulated, social interactions are too often supervised. Children are not learning the real difficulties of social interaction and, through this, developing resilience. We used to have a dog eat dog system where those children higher in the hierarchy looked down on other kids, knocked them around verbally and possibly physically, those kids lower down then did the same to ones further down the hierarchy while fighting to get higher up in the system. I am sure this still exists to some extent but parents and teachers are now far too much involved. Over time people learned how to live with each other, became more sophisticated and, while the hierarchy doesn’t go away, it becomes more manageable and people learn to be adults. Very little real harm occured. Those at the bottom of the hierarchy might have had some problems but generally they learned to deal with it. If not, they were the odd ones who might some mental health problems. The current system means many more have problems. By removing the old system we end up damaging our children. We create mental health problems. If they never learn to deal with the vicious interaction that is childhood they end up claiming a ‘syndrome’, having ‘anxiety’ and ‘depression’ and so on. I think a lot of our current problems with young people and mental health is occuring precisely because we do not let our children grow up properly, with all that entails. Let them learn as children then we will (ironically again) resolve the problem of mental health, particularly if we also stop telling children and young people that they have a mental health problem.
Why is it that I keep wanting to end these blogs with telling people to get a grip?
I have written this in the middle of the night because as usual, I can’t sleep in the middle of the night. Today we are off to Craster to buy smoked fish and to eat fish in the local pub. That is my contribution to healthy eating, better late than never!
Cancer 59
Posted on June 27, 2023 2 Comments
I am currently having my second round of chemotherapy. Whereas last week there was several hours delay before the drugs arrived, this week I was wired up and pumping drugs bang on time. I am in the same room, and chose to sit in the same uncomfortable chair. I don’t know why, as there were several different types of chair to try and I know I should have sat somewhere different, but I have limited novelty seeking behaviour. I do feel a little dizzy today, so if the content is a little odd, then blame that, rather than any literary limitations on my part.
The place isn’t as busy as last time, three of the eight chairs are still empty at 1100. Most of the drugs have arrived, except those for one lady, who is very patiently waiting, as though she is happier here than at home. Perhaps the company is better here. She just sits there, not reading, not doing anything. She is 78 yers old. I am the second youngest here, or fourth oldest, depending on your point of view. Two of the three women have alopecia, the other man doesn’t. Unlike last time the staff seem to have some downtime as the modern word goes. There is the same irritating radio programme on. It is one of those commercial stations that has adverts. Bring on an increase in the licence fee so all radio stations can be advert-free. At least it has music I am familiar with, unlike Glastonbury (apart from Blondie).
I have been wondering about the side-effects of chemotherapy. I have been warned about all sorts of things, but have not as yet experienced too many problems. I do have a little ‘chemobrain’, defined as cognitive impairment, cognitive change, a sense of mental cloudiness, forgetfulness, and general problems with memory and concentration. The worst part for me is that I am having problems recalling words, often simple words. I would give examples, but I can’t think of any. While I have always had a poor memory for many things it appears my Broca’s area is malfunctioning. I don’t think I am particularly confused, but how would I know?
Another common problem is a loss of appetite, and in order to deal with this people on chemo are recommended to eat well, eat small meals, and have lots of ice cream and puddings. My main appetite problem is that I am eating more food. Most of it is reasonably healthy, but I am craving sweet foods. I don’t have to try and eat puddings to resolve my appetite problem, I have to try and eat fewer puddings. I had a broken chocolate biscuit with custard yesterday because there was custard available and no pudding. Delicious. It was an expensive biscuit.
I have several drugs that I take during and after treatment to deal with nausea and diarrhoea but I had no problems last time so presumably they work well. I didn’t have to use the extra drugs provided.
I do experience quite extreme tiredness. I was in bed for 7.30pm a couple of times last week. I suppose I am usually up for several hours during the night so it is not surprising. I was awake at 3am today and didn’t get back to bed. I do quite like being up in the early hours, especially when I have to change my stoma. I have said before that I miss the privacy of going to the toilet so this is a partial replacement – not the same though.
The final set of symptoms that are commonly experienced are anxiety, distress and depression. I keep getting emails from MacMillan and elsewhere about all the counselling, etc that is available but I don’t see the point, at least for myself. As you may be aware from these rather personal blogs I find writing about my thoughts and feelings the best way of dealing with this cancer thing. I also feel that people, if given some encouragement, are mentally tough, resilient, whatever you want to call it. We spend too much time telling people they are weak or vulnerable and must need psychological help. It is just a way for psychologists and others to justify their existence. I will save my views on the unnecessary length of DSM/ICD for another time.
Death happens to all of us. I have the advantage over many people in having a rough idea of what I am going to die of and that I am not likely to live to be so old that I get dementia, become physically frail, and utterly dependent on others. Oh, sorry, I forget, I already am!
I have written this blog to avoid sorting out the index on my book. I did the index last week, but the editors have come back with questions, such as whether Culture and Cultures should be separate entries, and clarifying which pages a certain entry relates to, assuming I can somehow work that out using the word indexing programme. I suppose I had better get to it.
There are seven people here now. I am having my final flush.
Dr Nigel Hunt 