Cancer 160
Posted on December 10, 2024 Leave a Comment
Misery Christmas everyone. I am back in the hospital for treatment round 29. I am surrounded by , Christmas trees, fake jollity and tinsel. Noddy Holder and Bob Geldoff are back moneymaking, amd there is a desparate attempt to forget what a state the country and the world are in,. People even seem to think that the toppling of Assad is going to lead to a better life for Syrians, forgetting that Assad was originally supported by the West and that the Islamists who have taken over support the Taliban! Welcome, Syrian women, to the world of extreme inequality and no rights.
I have a bit of a cold. The problem with having a bit of a cold when you have cancer and are undergoing chemotherapy (apart from making you a bit of a miserable bugger, see previous paragraph), is that instead of snuffling, coughing and getting on with things it makes you feel like you are dying. OK, I am dying, but hopefully not of this cold. It is difficult to describe but there is a general dysfunctionality about the body, a desire to sleep, sickness, and general internal discomfort. It isn’t helped by my hernia causing trouble. Whenever I cough – or move – it is painful. I reach down to the floor like an unfit 80 year old. I strained myself the other day by playing with the cat.
Funny, isn’t it,. how only a few days ago I was lively and looking forward to beating the world record for the number of rounds of chemotherapy and now I am back to thoughts of death. The psychology of cancer really does have elements of manic depression, though not that manic, more of cheerfulness followed by misery, which brings us full circle back to Christmas! The main cheerful aspect of all this is that my next round of chemo is 24-26 December, so I can justifiably avoid the main event. After that I hope to take a treatment break and get a little healthier. Wild January holidays here we come.
Cancer 159
Posted on December 7, 2024 Leave a Comment
I have already mentioned being discharged from the district nurse service. I have now gained a strange satisfaction from independently doing my own bloods.
It is a strange feeling taking blood out of your own body, especially doing it when there is no one else in the house. I didn’t have to put a needle in my vein or anything complicated, just use my Hickman line.
Nothing went wrong. I took the blood samples, labelled everything, and put them in a specimen bag, then took them to the GP surgery next door. That was it.
Yesterday the consultant rang and told me my blood results – basically I am still boring, all results as normal as can be – but I was inordinately pleased because I had taken the sample. Small things.
We then discussed treatment. I will have number 29 next week, and then number 30 on Christmas eve, which means I will be on the bottle Christmas Day and Boxing Day. Not a problem for an atheist who stopped enjoying parties the moment he gave up alcohol. The consultant asked about chemo disconnect on Boxing Day. I told him I would do it. He seemed surprised. I am not sure why as we have previously discussed it. Anyway, it is easier than taking bloods, just disconnect the bottle from the line and put it in the bin.
Next, how I learn to administer my own chemotherapy – ot perhaps not.
In the New Year I will be taking another break from chemo. My third since starting. I am hoping to take more breaks, but it is important to balance the benefits of chemo – keeping the cancer controlled – and the benefits of a break – not feeling like shit a lot of the time.
Anyway, I like my chemo. It is enabling me to reach my two years since diagnosis next month. Life expectancy on diagnosis, two to two and a half years. Sod that. The record number of chemo rounds is 132. I have a long way to go yet. Two six week breaks a year, so 14 rounds a year, 30 already completed at the end of this year. I will be nearly 70 by the time I get into the Guinness Book of Records.
Cancer 158
Posted on December 2, 2024 Leave a Comment
The life and times of living with cancer, part 92.
What a strange night. I was very tired last night. After treatment was completed last Thursday we drove down to Devon on Friday to see the kiddiewinkles, driving back on Sunday. I was so tired. We went to bed at about 8pm after I changed my stoma. I read for a few minutes then fell asleep. By 8.45pm I was up and going to the toilet. By 10.30pm I had been to the toilet five times. By 2am I had lost count of the number of times I had been to the toilet, constantly waking and falling asleep. BY this time I was fully awake and went downstairs to read. I let the cats out between 3am and 5am and then had to change my stoma again. In case you are wondering there was some diarrhoea. Be careful not to get it on the furniture.
The problem with the stoma after chemotherapy is that it becomes a little unpredictable both in terms of frequency it needs to be changed and what is emerging from my remaining bowel, solids or liquids or something in between. In these conditions I don’t like to leave a bag on for more than 12 hours as it may start to leak. Where the glue attaches to the skin there is a slow (or usually slow) seepage, and if it gets out then, well, you know.
I went back to bed after 5am and went to sleep, punctuated by still going to urinate at very frequent intervals. I think I now hold the record for the number of pisses in a night. They were heavy. I like to think that urinating frequently is getting rid of the breakdown products of the cancer and the chemotherapy. It helps keep me cheerful in the night when I am constantly getting out of bed.
I was also dreaming intensively, often the same dream for long periods of wakefulness and sleep. One dream was about some kind of fight where I was attached to many cables and I was removing them one by one. I don’t know if this is linked to the reality of the Hickman line and that I woud like it removed. Ask Freud, I’m sure he would have something to say about my circumstances. I seem to write a lot that is relevant to the anal stage, even though it has little relevance to someone with a stoma. Thanatos might be more relevant for my circumstances.
Don’t tell anyone, especially those I criticise for not getting up in the morning, but I stayed in bed until after 10am. Ridiculous.
Cancer 157
Posted on November 29, 2024 Leave a Comment
Some good news, I have been discharged from the district nurse service, not because I am any better, instead I am doing the tasks. The good bit is that I am well enough and trusted enough to do the tasks, and that it will give me a little more flexibility – not much because I still have to do the tasks on the same day – every Thursday – but I won’t have to wait around for the nurse.
Every week I have to flush the two Hickman lines. This involves cleaning them, changing the bungs on the end of each line, and flushing them through with saline and heparin.
Every other week I take the blood sample, it is a little weird drawing off your own blood but there we go. I attach a needle free connector to one line and fill three syringes, discarding the first. I then label everything, put the samples into a sample bag with my blood form and take them to the GP surgery. I can do all this first thing so the day is free.
The other week is chemo disconnect. The bottle of flourourocil that is attached on Tuesday is disconnected 46 hours later on Thursday afternoon, when it is theoretically empty. Disconnect is simple, I unattach the bottle from the line and dispose of it in a sharps bin. The procedure for disposal of the chem bottle is strict. It goes back to the hospital for disposal.
This means I am free from the moment I leave the hospital, and we can get away. I generally feel rough at this point but we can now go away on the Wednesday, still on chemo but with the kit to dispose of it.
It is effectively an extra two days of freedom each fortnight. That might not sound much but when the routine is every fortnight for the rest of your life then two days is immense.
I am lucky that I am still well enough to make use of this new system, that the drugs are still stopping the cancer growth. I don’t know how long it will be before I can’t do these tasks and the nurses will return, but for the moment I have parole and I am going to use it.
Cancer 156
Posted on November 26, 2024 Leave a Comment
Another day, another treatment. For the 28th time I am in the CDU being filled with the usual poisons. It is a nice day outside but I am not seeing any of it. I was in early but pharmacy had not sorted out my drugs, so there was a significant wait for treatment. Then the ward ran out of calcium follinate, so my second batch of drugs was delayed. Sometimes I wonder whether the NHS ought to introduce the concept of management, so the clinical staff can get on with their job and patients can get on with being treated. There are managers in other businesses and the NHS is fundamentally a business so it would benefit from similar treatment. If it introduced managers then they could organise the way the organisation works, enabling staff to work efficiently. It would even save money so more people could be treated with better kit and well paid staff. I know, it is an unrealistic fantasy.
In the scheme of things I have been feeling a little less well over the past few weeks. Inevitalby I fear it is my decline. Perhaps it is, we all know it is going to happen, and it is nearly two years since diagnosis. My bloods are fine, my CT scan showed little change, but there is more to it than that. There is the increased pain in my abdomen, perhaps partly related to my hernia, and there is the generic feeling of decay and unwellness which is probably unmeasurable. I am sick, both physically and sick of treatment. Chemotherapy makes me feel worse than it did, the negative effects last longer. I do understand how and why people say they have had enough and stop treatment, though it is a fatal decision. There is only so much a person can stand. Resilience is limited. The stiff upper lip becomes floppy, as does the grip.
What am I saying? I am not there yet. Most of the time I am having a good life, a good marriage, good food, good travel. I am reading a fair few books. Today I finished Nuclear War: A Scenario, which provided an excellent account of what might happen in a nuclear war – spoiler, everyone died. On the other hand, I read some crap, like this year’s Booker winner, Orbital.
On the other hand I am useless in the garden and at the general mending tasks around the house. When I complete a job I am pleased with myself. Yesterday I carried the winter tyres from the shed at the top of the garden, took the car in to get them changed, and then carried the summer tyres up to the shed. That is a big job now.
On balance my life is still very positive. I am not ready to finish things yet (though I am looking forward to the assisted dying act becoming law before I am ready for it) – it is just that the treatment can get difficult.
Dr Nigel Hunt 