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.
Cancer 58
Posted on June 23, 2023 Leave a Comment
While I am doing my best to hold it all together and accept what is coming, there are times, as I think I have noted here before, when it can be quite difficult. This morning was one of those times. I had an appointment to see the consultant to see whether I would be fit for the next session of chemotherapy. I spent the night fretting. I was going to get the results of my CT scan, it was going to show several large tumours which would mean that the treatment was pointless and I should get myself ready to die in the next few weeks. I then realised that, despite my claims otherwise, I am not ready to die. I want to scream against the machinations of death, cling onto life at any cost, I am prepared to go through more operations, with tubes stuck up and down my various holes, lie in hospital in agony, with junior doctors inexpertly poking and prodding, themselves bewildered and bewildering me. I have too many things to do. Me, who claim to have no bucket list, wants to do so many things. I want to write my books, go to places, experience life. I don’t want to die.
I arrived at the hospital very early, as always. I didn’t actually see the consultant, but two of the nurses I have seen before. They asked a few questions about my side effects, none really, just some back and belly ache for which I have painkillers that I usually forget to take (not that painful then?). I am tired, but the backache is worse at night, and I usually have to empty my stoma in the middle of the night. In any case, I have not slept properly for 60 years, so what’s new? Results of my CT scan? Still unknown, though I was previously told that the treatment, whether or not new tumours were appearing, would be the same so in a sense it doesn’t matter. Results from my latest blood test? Normal. I have fully functioning kidneys, liver and so on. Vital statistics? Blood pressure normal, heart rate normal, blood oxygen normal, temperature normal.
The nurse said that he hoped the rest of his patients today would be as easy as he authorised my chemotherapy for next week.
Fretting about nothing. As the Stranglers said, just get a grip on yourself.
Cancer 57
Posted on June 22, 2023 Leave a Comment
“Sticks and stones may break my bones, but calling doesn’t hurt me.”
Why don’t we hear this any more? Why is it now assumed that calling does hurt, that the use of words in itself is damaging? It isn’t. Words are just words. We should be careful in the way we use them, but to use individual words per se is not a problem.
I got a really nasty look yesterday (I know, looks don’t hurt any more than words do), simply because as I got out of the car I commented that I didn’t need to use my disabled parking voucher. Is that the right term? I don’t know because I call it a cripstick. The people in the next car gave me such a nasty look that if I was one of these modern people I would probably need hospital treatment. OK, so they had a cripstick on display. So what?
I can use the term cripple and its derivatives because that is what I am, by definition, a cripple, and if I want to use that word I will. The difference between my attitude and the attitude of others towards words like this is that I don’t care what word people use. What is more important is the way words are used.
Limitations on speech have gone too far. If I say, ‘All Jews should be gassed.’ That is hate speech. I am suggesting that Jews should be killed, and killed in a way that has unpleasant connotations for people. If, on the other hand, I comment on the attractiveness of a girl walking down the street, perhaps with a wolf whistle added, that is not hate speech, that is often the best a man can do in terms of providing someone with a compliment (I know, I shouldn’t use girl in this context, wolf whistles are banned, and probably the word attractiveness is banned because it differentiates in a negative way between a pretty girl and a not pretty girl – there I go again). Actually, I never was any good at wolf-whistling. When I worked on building the children’s hospital in Derby endless pretty nurses walked past and many of the other builders wolf whistled and made comments. I just couldn’t, not because I couldn’t whistle but it just wasn’t the way I complimented a girl. I needed to talk to her properly, or at least I did when I got over my shyness.
I accept that there are changes in good manners and acceptability, but limiting the use of words is unacceptable. And it is not only during interaction between people. We have started book burning. Making changes to books because they might ‘offend sensibilities’ (in other words upset people who need to get a grip on reality) is abhorrent, and is equivalent to the booking burning carried out by the Nazis in the 1930s. Why should some people dictate to others what they should and should not read simply because a book uses certain types of language or words, or puts across certain ideas? Why is it that some people think that children and others are not capable of distinguishing between acceptable and unacceptable behaviours by characters in books? We are not as stupid as some people make out. We can tell the difference between when a character in a book is doing or saying something acceptable versus unacceptable.
Using words such as cripple means nothing in itself, it is not a hate word. I don’t think there are such things as hate words. The hate is in the context. If you could get inside my body, feel the aches and pains, the times I find it difficult to keep walking, the need for so many drugs, then you might acknowledge that, compared to other, dare I say normal people, I am crippled. It is not hate to say so, it is a statement of fact.
Cancer 56
Posted on June 18, 2023 Leave a Comment
“As the body becomes weaker, so the spirit grows stronger” – Cicely Saunders, early pioneer of the hospice movement.
I am not sure whether this is true, though I would like to think so. I think the relationship is more complex than that. Sometimes I feel like my body is growing weaker and my spirit is also struggling, though only yesterday someone suggested that I look weller than some people who are well. That is encouraging. I do have plenty of incentives to keep going.
Part of the problem is the regime of drugs that I am using. Here is an incomplete list, incomplete because I failed to take it all in during my first chemotherapy session. These include my heart drugs, my cancer treatment drugs, and the drugs to deal with my reactions to other drugs. I have no idea whata they are doing to my body in combination but I suspect it is not all good, though if they work at all in relation to whacking the cancer then I won’t complain too much.
Rivaraxaban
Furosemide
Ramipril
Bisoprolol
Allopurinol
Irinotecan
Fluorouricil
Folinic acid
Androstenol
Tramadol
Metoclopromide
Dexamethosone
It is now Sunday, the first Sunday after treatment started on Tuesday. For the first few days I did not experience any significant ill-effects, but in the last couple of days I have got very tired. I am not sleeping. Nothing new there, but it is becoming more difficult not to get to sleep, I am drifting off early in the evening, but to stay asleep. I get an aching back and aching shoulders. I do not know how much this is due to treatment, reaction to treatment, or something else entirely, but I have my suspicions. Last night I went to bed at 8pm and went almost straight to sleep. I was up before midnight, sitting downstairs reading about Northumbria (we have booked a cottage near the Wall for the end of the month). I changed my stoma (which is also unsettled), watched a few minutes of Threads (1984 film about nuclear war, well worth watching if you want a reminder of the fear we experienced during the Cold War), read a little Crime and Punishment, and went back to bed about 4am. I got some more sleep, so in the end I probably got 6 hours, which is a very good night for me at the best of times; but today I am still tired.
I did do quite a lot of exercise yesterday, over 10,000 steps, including sitting on a bench overlooking a pond with a fellow very old man discussing the meaning of life, death and planning my funeral, so I suppose I have an excuse for tiredness.
Today I have been to a couple of shops, bought a few books and, perhaps most significantly, I have just finished indexing my book. For those who have never indexed a book, you don’t know what you are missing. At least it is one more stage towards the completion of a book that I really would like to see when it is published. Book launch party anyone?
Cancer 55
Posted on June 13, 2023 Leave a Comment
This is one of those boring blogs. I am in a boring situation so I want to impose the boredom on you. I am in hospital, sitting in what for the first hour was a relatively comfortable chair, with a saline drip into my PICC line, waiting for my drugs to arrive. Apparently there is a three hour delay for them arriving from the pharmacy. I have been sitting here for two hours. I am not sure when the three hours began. Hopefully it is from the time of my appointment, 0930, in which case they should arrive in about an hour. Alternatively, it might be from the time I was told about it, about half an hour ago.
I am in a ‘sitting ward’ with eight chairs, seven of which are occupied by people in a similar position to myself. Several people just sit. I don’t know how they do that. One has his wife with him, and they chat about this and that. One is watching something on a laptop. The tea lady has just been round. This is my second. I haven’t been offered any food yet. They won’t know that I work to Finnish times, ie, lunch is already late at 1138. They will be offering sandwiches. I assume most will have mayonnaise in them, which is an unpleasant substance. I don’t like mayonnaise. I have just eaten an apple I brought from home.
I’ve just bought some TUC cheese sandwich biscuits from the Friends’ trolley. I haven’t eaten them since I was a child. They are just as bad as they were, but they are keeping me conscious. The cheese in the middle is very weird but it is better than putting cranberries in cheddar. The food providers I have just ordered a ham sandwich, yoghurt (not the toffee one they have here) and piece of cake. Wahay, back to hospital food. At least last tie I was too ill to eat it.
I am reading the Eiger Sanction, by Trevanion. It is unlike the Clint Eastwood film, which is rather serious. The book, which is a spoof, has been compared to a comic Bond novel. It is silly, trivial, and fairly enjoyable, but I think I will shortly do a bit of work on my own attempt at a novel. Trevanion has also been compared to Zola, Poe and Chaucer. His real name is Rodney William Whitaker. The name Trevanion was chosen by his wife in honour of the historian Trevelyan.
My drugs arrived at 1300 hours, my appointment was 0930, so they were rather late. The first drug is irinotecan, which is an antineoplastic drug used to stop the growth of cancer cells (hopefully!). It is dripping slowly into my arm.
I have three drugs to take home. Dexamethasone (anti-inflammatory, adjunct to treatment of nausea), laperamide (for diarrhoea), metoclopramide (anti-nausea), with various doses and times to take them.
A little later. After flushing through I am now on calcium folinate, which is going to take two hours to drip – Chinese water torture – perhaps I could squeeze the bag to speed it up.
I am home. It is late for me. I am tired, but in that odd ill sort of way which means I don’t think I can sleep.
I have genuinely lost track of the number of drugs I have had today. I took 2 painkillers in the early hours, then 3 tablets this morning at home (heart/gout), then 5 tablets pre-chemo (10 in total), a pre-chemo injection (11), at least 3 chemo drugs via drip (not sure if any were combination) (14), 2 painkillers at home (16), 4 heart/gout (20), and we could add in tomorrow’s drugs, 3 different ones, between 4-12 tablets for each, along with the approximately 13 other tablets I will have as standard. I have lost count. Is it worth it? If it keeps me alive and well for a significantly longer period than it would if I didn’t take the drugs then yes, though don’t ask me to define ‘significant’ or ‘well’.
I finally got away from the hospital at 1800, rather later than initially planned. I do not feel sick, I do not have diarrhoea, but as I said, I am very tired. It was a long day. I have a little bottle around my neck attached to the PICC line that I have to resist pulling off for 46 hours or so. Welcome to the world of chemotherapy. Top tip, don’t get cancer.
Dr Nigel Hunt 