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.
Cancer 155
Posted on November 19, 2024 Leave a Comment
It’s funny how good and bad can be held in the mind at any one point. We are away in the Yorkshire Dales, lovely hotel, lovely food, not much snow. I am sitting in front of a log fire on a large settee being lazy. Yesterday in Skipton Oxfam bookshop I found a copy of JB Priestley’s Good Companions, a book I have not read before but am rattling through. He tells a goods story. Last night we had an excellent meal. I had a starter of trout, a main course of beef and a pudding of chicken parfait (I don’t like modern puddings, another starter is usually the best idea). This morning I had a traditional breakfast, which included, heaven of heavens, fried bread rather than that ghastly hash brown US inedible nonsense. We then visited the best cheese shop in the known universe and went to the Grassington bookshop, where again books were bought.
Unfortunately, after breakfast, my abdomen started playing up. I felt and feel an immense pressure that was and is quite painful. I have had to take off my hernia belt. I don’t know what it is, but will try and look on the positive side and think that it is the breakdown of cancerous cells post-treatment, and the damn things are taking longer to disperse than usual. On the negative side it feels a little like the hours before I projectile vomitted after my operation last year. This morning I took Tramadil with little effect and have spent the day not quite in agony (it isn’t gout after all), but very uncomfortable. I walked around Grassington like a cripple, and horror of horrors was unable to eat anything in the cafe we visited. A cafe without food is like a pencil without lead – pointless (sorry Blackadder).
I am desparately hoping that I am fit to eat tonight, as I am looking forward to my brill followed by chicken followed by soup.
Having cancer can sometimes be really shit.
Cancer 154
Posted on November 17, 2024 Leave a Comment
It is a bit depressing again. I don’t know why. Apparently, Sundays after treatment are usually my low point, and today certainly is. I feel emotional. I haven’t felt well these last few days. My stoma has been playing up and there is this sicky but not sicky feeling I get in my abdomen (I am not in the mood to try and accurately describe the feelings associated with cancer treatment). I know there is a battle raging between cancerous cells and chemotherapy, and no doubt there are many civilian casualties among the normal cells, but it is an unpleasant feeling, being a continual battlefield. I can imagine the ruins lying around my abdomen, the fragments of flesh remaining every time the chemo chemicals launch an attack, the resultant casualties slimy and surreal, oozing through my tired passageways.
It might in part be psychological. My brother-in-law had his stag night last night, a formal stage in getting remarried after my sister died last year. I haven’t mourned my sister as I have been too busy trying to survive, but perhaps this is part of it. I am glad for my brother-in-law. He is happy, getting married again. He seems happier than I have ever seen him. Perhaps the stag do (I lasted until 8.30pm, pathetic I know. One ginger beer if you are asking) has reminded me of my sister, making me feel for her for perhaps the first time since she died. It is hard to tell. I also don’t know whether my brother-in-law should still be called my brother-in-law. He has been this person since I was a teenager, so I think the label will stick. Family structures can get awkward if they are thought about too much.
I also had an email from British Airways today. I have asked them about the assistance they provide for we poor cripples, and received a very positive answer, so I am thinking of flying again for the first time in several years. We are looking at going to Greece, so I am starting to reread The Odyssey. I like my history to be up to date. Emotions again, the thought that I can go on holiday by air, get somewhere faster and further than driving. In psychology, we have these theories of emotion, where the emotional response has to be linked to a cognitive component be given an emotional label. That link is not present for me, so I just feel an unnamed emotion.
I’ll feel better tomorrow. We are going away again, just for a couple of days.
Dr Nigel Hunt 