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.
Cancer 54
Posted on June 12, 2023 3 Comments
My PICC line is in, my arm has bled fairly heqvily, and tomorrow morning is chemo time. The PICC line just makes me think of related terms such as PICCaresque novels, ones which involve rogues or rascals doing stuff in episodic form, Captain PICCard of the Starship Enterprise, playing the PICColo, or PICConio the wooden puppet (something not quite right there).
After being woken at stupid’o’clock by the absurd burglar alarm of our unchristianly neighbours I am trying to go to sleep early. It is just after 8pm. No doubt I shall sleep and be wide awake before midnight with a rapidly filling stoma and no further desire for sleep until 5am, after which I will eventually sleep, have a bad dream and be woken by the alarm at 6.30am.
I used to remember a lot of my dreams. They were long, vivid and well structured. The vest ones were like feature films. I wpuld sometimes wake up in the middle, then go back to sleep and continue with the same dream. Often I had control over my character in the dream. My favourite memory of a dream is when I was walking along a mountain path, someone came at me with a pickaxe from behind and cleaved in my head. That woke me, but I quickly returned to the dream, rewound it a few minutes, relived it and, as the person raised the pickaxe I turned and grabbed it to shrvive the rest of the dream.
Can the pickaxe be a highly inappropriate metaphor for my cancer? Of course not, don’t be daft. This isn’t a bad course on Freudian interpretation of dreams in a bad creative writing class.
“To die, to sleep, to sleep, perchance to dream. Ay, there’s the rub, for in the sleep of death what dreams may come?”
Dr Nigel Hunt 