Cancer 112
Posted on March 14, 2024 Leave a Comment
I will apologise at the outset for bringing up a subject that some people responded negatively to in an earlier post, that of dying. Over the last three weeks, I have been having a bit of a rough time. Initially, it was pneumonia, then a general feeling of malaise, and yesterday I got a bug and was laid up in bed, feverish and with diarrhoea. The fever has gone but the diarrhoea is still playing its games. I have had to change my bag five times since last night, everything pure liquid, and one with a bit of a spill onto my body and the bedsheets. Lovely.
Throughout this time I have been coming back to the idea that I am dying. Being ill with a cancer that is going to kill you is not like being normally ill. When you are normally ill you think that the pain you are in, the sickness you feel, etc, is bearable because it will go away and you will be healthy again. I don’t have that. On the other hand, the feelings of pain and sickness are not like ‘normal’ pain and sickness. There is something else inside me that I am unable to name or really describe. It is a general feeling of illness and deterioration that is not all-consuming, but it dominates thoughts and feelings. There is a sense of lethargy. I can’t walk as far as I could even a few months ago. I don’t have the energy to do things. It is an effort to even walk up the garden.
There is a sense that I am being taken over by death (for want of a better word), that I can detect the growing number of things I cannot do, and that eventually I will stop driving, I will take to my bed, and I won’t get up again.
People say I am doing well because I get out and go places. We go for a drive, we go to a town or village (not a city of course, they are too big), we go on holiday. I am fighting my damnedest to keep doing these things because I know that if I give in then that is it. Yesterday we were going to Calke Abbey for a look around the house. We got to the cafe there when I said I couldn’t go in. I couldn’t walk as far as the house. I could have used the crip wagon that runs up and down, but I don’t think I could have got round the house. We had to come home. It is so frustrating, and goes entirely against my will to keep active. Then again, when I got home I took to my bed and slept, except when I was unloading the bags….
Cancer 111
Posted on March 8, 2024 Leave a Comment
At this point in an innings Mr Shepherd would be balancing on one leg. Superstition has odd effects on people. It hasn’t been a great week. It is now Friday afternoon and I am watching Inglourious Basterds for perhaps the 5th time. It is one of my favourite films.
I had a CT scan this morning to determine what my inglourious basterds are doing in my abdomen. I wasn’t looking forward to it because I have been feeling sick all week, perhaps because of the somewhat messy chemo experience on Tuesday.
Feeling sick still doesn’t affect my appetite. I have no idea why. I feel rotten but offer me meat or ice cream and I will probably say yes. I am only watching a film in the afternoon because I can’t face much else.
I was dreading the scan. I am unable to eat and drink in the morning beforehand, and I like to eat as soon as I am out of bed. Nevertheless, it went fine. I didn’t throw up as I did once when in hospital recovering from my operation ( see some long ago blog).
What did happen was that there was an anmoying man arguing unnecesarily with a nurse. The sort of thing nurses should not have to put up with.
The nurse came to me to remove my cannula. She asked me if I had previously had a scan. I said yes. She asked when. I said my first was when I was in hospital. Yes. She asked if I remembered her. I didn’t. Then she explained. She was the one I threw up on when I decorated the whole of the waiting room with the contents of my guts. It got in her eyes and she had to go to A & E. Apparently cleaning lumps of green puke out of someone’s eyes is very painful. I apologised, but she dismissed it as just part of the work of a nurse. The annoying man heard all this. He said nothing but I hope he was regretting his earlier words.
So, it is time to cross one’s fingers or stand on one leg and hope that my bastards haven’t grown and that my chemo will treat me as normal next time.
Cancer 110
Posted on March 6, 2024 Leave a Comment
My treatment didn’t go as well as expected yesterday. It was going perfectly well until nearing the end, where I should have my bottle/pump fitted, which I wear for the next 46 hours. Unfortunately, there was a problem with my PICC line. It had started to pull out. How? No idea, it is not supposed to move. It has a grippy thing that attaches to my skin at the point of entry, and then goes 52cm up my arm, past my shoulder, to just above my heart. It had been pulled out by several centimetres. There is a general worry here, as the previous day something similar had happened, and only a few weeks ago a whole set of PICC lines were faulty and had to be changed. My first thought is that the Government is issuing dodgy contracts to their friends, just like Johnson was doing with Covid. Or is that cynical?
So, I was all ready to leave the hospital around 1600 hours when this blew up. There was a long discussion between various nurses about the best approach, whether to attach the bottle anyway – a bad idea as the PICC line was functioning as a midline and so the drugs would not get to the right place, or send me for an X-ray to check whether the line was out of position. Sensibly, I went for the X-ray, which on inspection by a doctor, was found to be out of position. It was then back to the debate of when to remove the PICC line when to replace it, could I still have the bottled drug the following day, etc. In the end, it was decided to remove the PICC line and omit the drug Irinotecan (which blocks an enzyme so cells, particularly cancer cells, can’t grow) for this round.
I was a special patient for an hour or more. Several nurses and others were involved in working out the solution to my problem, what to do now, what to do in the future, etc. They were all excellent.
My only problem and it is a traditional problem but one that I thought was disappearing, was the doctor involved in making the decision. Once he had noted that the PICC line was in the wrong place and telephoned elsewhere for advice, instead of coming to tell me about it (he knew who I was, I had spoken with him at the desk) he went straight to the other side of the room to discuss it with a nurse. Very rude. No bedside manner. The nurse was embarrassed, calling across to me a couple of times, knowing that I should be involved in the conversation. I nearly got up and went over. I should have done, but instead, when he was leaving the room, still ignoring me, I called him over and made him talk to me, so he ended up wasting his time having to explain things twice.
Though I am in hospital a lot nowadays it is rare to have a negative experience like this. It is basic psychology. I was a patient distressed by problems with my treatment. Come and talk to me, let me know what is happening. The worst thing about being seriously ill is if people are not honest. The worst experience was the initial diagnosis of cancer. Just say I have cancer and that I am fucked. It is far better than being dishonest or trying not to speak at all to the patient.
Nevertheless, this did not ruin the overall positive experience of dealing with the problem. Hurrah for the nurses and those supporting them. They make life going into the unit more than bearable, especially certain ones. You know who you are.
My treatment should continue as normal next time. I should have a new PICC line emplaced (can you use emplaced here?) sometime next week, and for the moment I am enjoying not having a bit of plastic dangling out of my arm. On Friday I have a CT scan to see what is happening to my cancerous baubles in my abdomen. Last time the bigger one shrunk a little. I am not sure whether they can shrink much more, but they won’t go away.
Cancer 109
Posted on March 5, 2024 Leave a Comment
Another day another treatment. After a week’s delay due to pneumonia, I am back in the treatment room. I am bored, so I am going to make you bored. There is nothing exciting happening. I can’t be bothered to read or write – including writing this. My stoma is making rude noises, as my mother used to say, and obviously, I have no control over it. People are very polite. I did have conversations with certain nurses, one of whom is leaving us to go to haematology. That is not acceptable. The other is busy writing, which is acceptable.
There are no exciting patients today unless it is me not being exciting. IT could be. I did plan to do a writing exercise, writing a paragraph or so describing the various people in the room, but it is not worth it today. For instance, Harold just sits there looking at the nurses and doing very little. He looks like a farmer. Gary just sits there. He is in his late 60s, with receding hair and glasses. Gary and Harold occasionally speak to each other. I have just found out that Gary is a beef farmer. I got the wrong one. Harold just smiles, wondering what to say, so he brings up having an allotment and the weather. I still think Harold looks more like a farmer. Gary looks like an ageing Auden until he speaks.
Faith has not spoken since getting here. She has her head covered due to alopecia. Edward is an Indian, and again very quiet. Neither Faith nor Edwards are doing anything other than staring into space. No phones, no puzzles, nothing. Diana has family with her. I don’t hear them speak very often, and certainly not about anything of interest. Gary and Harold are trying to talk beyond the weather but it doesn’t seem to work. Cathy wears a turban and stares into space. I am not sure whether she has even spoken to the nurses. Barbara is rather frail and seems to know a couple of people, interacting with them to some extent, but again spending most of the time just sitting and staring.
That just leaves me, I will call myself Andrew (now you should understand the code). Apart from a few conversations with nurses, I have been reading my Starmer biography, looking at the news, and eating food. It is not an exciting day. Sorry Keir.
I hope this has bored you as much reading it as I have been bored writing it. I have another 2-3 hours here before I can go home and feel queasy all evening.
Cancer 108
Posted on March 2, 2024 2 Comments
My chemotherapy treatment was delayed for a week because I had pneumonia. Fortunately, I am better now (if that is the right word) so my treatment will go ahead next week. My bloods are as normal as they can be, my blood pressure is a little high, and my temperature is high normal. I am the picture of health. Tomorrow I am having an Afternoon Tea in Grasmere, which will help my weight issue, well, it will hinder it, but help and hinder are just two sides of the same coin and sometimes you just have to spin it.
I suddenly have several books to read on quantum theory and theoretical physics. I am enjoying them, but thinking that to really understand what is going on I need a better understanding of mathematics, particularly of calculus. This idea that I need to study new subjects to reduce the effects of chemobrain and find new ways of enjoying life could be taking a dangerous turn. While I am reasonably good with fairly complicated statistics and I have an O level in Maths (which was one of my two O levels from school, the other being English Language, the story of the failure of the Comprehensive system may be for another day), advanced calculus may be a little beyond me.
Perhaps as an alternative to Calculus, the topic of Lord Byron came up today, I don’t remember why (chemobrain). I always hated the romantic poets. They put me off poetry for life. I appreciate the war poets (Owen, Sassoon, Baldrick), a bit of Auden, and Betjeman, but mostly when I see poetry I tend to ignore it. If I do read it I generally get bored and move on to better things in life. I don’t know why I can;t connect with most poetry. I love the English language, reading widely, and writing. I have published, roughly, more than a million words in articles and books, and perhaps 50,000 words in this blog (that is a guess. Feel free to add them up and let me know the truth), so I must like the language at some level. I’ll just blame the romantic poets….
I have never been to Byron’s home, Newstead Abbey, partly because my car has always found it difficult to head in the direction of Nottinghamshire, but I must rectify that. I should see Byron’s grave in Hucknall. He is buried near his daughter Ada Lovelace. I must try and read his poetry. I ought to read a biography and find out more about his experiences helping Greece against the Ottoman Empire. I think he was with the gang that tried to think of a good story, which Mary Shelley won with Frankenstein, a good prose story. There is suggestions of mental illness, a daughter (not Ada) born as a result of his liaison with his half-sister, and so on. If anyone can suggest a good biography please do so. It has to be more fun than calculus.
Dr Nigel Hunt 