Cancer 173
Posted on February 7, 2025 Leave a Comment
I am in hospital for my consultant meeting prior to restarting my chemotherapy. I have had six weeks off, six weeks where we have been away three times, attempting to take advantage of the time. We went to the Netherlands, Yorkshire and Shropshire. All good, but I am exhausted. Holidays are supposed to be restful. You are supposed to feel better after them, ready for the next stage. I just want to go to sleep. My legs ache, everything else aches. Of course, it might not be the holidays, it could be the treatment, lack of treatment, time of the month, how the hell should i know?
This is my third visit to hospital this week -just to add to the exhaustion. On Monday I had my CT scan – no results yet – at Ilkeston. They have a new scanner. It is more convenient for me. The route is a bit of a change and there is plenty of parking. It was bloods yesterday, here at Derby. Inevitably my Hickman Line is still blocked, or rather it is functioning one way, stuff goes in but won’t come out. I flushed the line as usual in the morning and then came to the unit for my bloods to be taken. I might have had it done elsewhere, but I wanted information, which I succeeded in getting. I want this Hickman Line removed and a portacath put in its place. The Hickman Line leaves tubes dangling from my chest. The portacath sits under the surface of the skin, no dangling lines, and I can shower, bath and go swimming, which would be a bit of a change to my lifestyle. I hope to discuss it today with the consultant.
Today I also get my blood tests and hopefully my CT scan results. It should be terrifying, learning whether the cancer is growing and whether my organs are still functioning sufficiently to enable chemotherapy, but as we find with operant conditioning, one cannot stay permanently anxious. I have become rather blase about my results. Fortunately in the past they have been generally boring, with everything functioning OK and the cancer under control. This will fail, but when?
At times I feel like a fraud. I have said this before. I was diagnosed with incurable cancer that is going to kill me, I tell everyone, and two years later I still haven’t died.
I am limited in so many things. I can’t walk far, I tire easily, and I struggle with socialising. I have so many aches and pains I dont want to describe them. I have a stoma that is at times troublesome and usually sore, and I have what seems to me multiple hernias throughout my abdomen, held together with a band around my abdomen that is permanently uncomfortable because in order to work at all it has to be tight.
Socialising takes more energy than we think. I have always liked talking to people and listening to people, and I still do, but I can only do it for so long. If I am good then I function well for a couple of hours or so, then I turn into a pumpkin. It is almost like there is a switch in my body. Once it is switched, and it is often quite sudden, that’s it. I want to go home, or I want the people to go home. EVen so, this only works duri g the day or the early evening. The switch automatically functions in the evening at around 8pm, sometimes a little later if I am lucky.
People still ask me how I am. I usually give the British answer that I am OK. If I was truthful the answer would take a lot longer, and break the bounds of social expectations. When you are asked how you are then ‘fair to middling’ (or its modern equivalent) is the right answer. What I would like to do is explain how I really feel. I know people don’t want the details – particularly after so much time – but if I did answer then there is a whole set of things I would say. Some of these things stay the same for months, others come and go.I am sure no one wants me to die but if I answered the question in full then they might change their minds. They don’t want to go through this, even vicariously. Vicariously it is boring.
Recently I have got on better with writing. I am using my shed again, which helps. I have finished a rough first draft of my Wingfield Manor book (very short), so next I will get my article on the Siege of Leiden finished. It is for Battlefield magazine. I am enjoying being a historian rather than a psychologist.
Cancer 172
Posted on February 3, 2025 Leave a Comment
I am continuously conscious of my limitations in life, my inability to do things I used to find easy, my slowness, my lack of energy, my failure to get up and do, how I look at a job that needs doing and don’t do it, how my lethargy ensures a lack of action. It is not just the physical work that needs doing, it is the mental work, in my case it is often writing, though it can even be a lack of motivation to read.
This does include what I mentioned just a short while ago, that I can’t walk as far as I could just a few months ago. It is an effort to get up and walk, and difficult once I am up to walk more than a few hundred metres. Everything begins to ache, to hurt. I become breathless – not in the normal sense (there is little normality any more), just a difficulty in breathing.
Even the little jobs at home don’t get done. I have been putting a door catch on my wardrobe for months. It is held shut by a scrap of paper, and the components to do the job are sitting on top of the wardrobe.
I can’t do anything outside. Partly because it is cold and I should not expose myself to the elements – good old dysfunctional immune system – and partly because I am not able to be bothered.
I think my body’s main effort now is in sitting and fighting the cancer. This means it is difficult to get any energy to do the everyday things in life. I just sit unless I make a real effort to do something. When I makethe effort I tire very quickly and need to sit down again.
It sounds pathetic – at least to me – and lazy, but honestly I am not being lazy, though I may look it. I sit in my comfy chair surrounded by necessary junk (books, computers, notebooks, pens, books, etc). If something falls on the floor it is an effort to pick it up. I have always been messy but this is silly. I am writing this in the middle of the night while changing my stoma. I can’t even be bothered to pick up my computer to write so I am doing this on my phone.
I fight it, naturally. I get up and do things. I go about my business and I think to people I am getting on with things. We go on holiday. We go out. We see people. I help make marmalade.
But underneath this exterior, this physical adonis, this mighty Hercules, doing the slightest thing is often an effort.
I can’t be bothered to write any more.
Cancer 171
Posted on January 29, 2025 Leave a Comment
As I blindly live my life, trying to be oblivious to what is going on inside my body, because I could not cope with reality, I sometimes see through the curtains to the real world and realise there are a lot fo changes occuring in my body, and they are not good ones. While away on holiday I wanted to take a short walk, a walk which a few months ago I could have done easily, if a little slowly. I managed to get a couple of hundred metres, perhaps a little more, and had to turn back, so I walked around half a kilometre. When this started I could walk 2-3 miles (yes, I have always mixed metric and imperial, it relates to the time I was brought up. We learned both). While that is not very far, it is good enough in most circumstances.
Today I walked around an abbey, a very nice abbey, Rievaulx, near Helmsley. Unfortunately I struggled to even walk around the site. I managed, after a fashion, but it seems not long ago that if I visited a ruin I would scramble everywhere, through every tunnel, up every step, around every corner. But not today. I did a sedate stroll up around and back.
I am deteriorating.
Also, as I have mentioned before, my abdomen area is a mess. Forget the stoma, it is the shape and size of the area. OK, I eat a little too much and – as demonstrated – I don’t get enough exercise, but prodding and poking can be quite painful, and a coughing fit (of which I have plenty as I am usually ill in some way – buggered immune system) causes quite a lot of problems, not least the feeling that I am going to explode. So far my skin is holding out, but at some point the walls are going to be covered with bits of me – at least that is what it feels like. And it is slowly (not slowly enough) getting worse.
I am even starting to think I should take painkillers regularly. After I mentioned painkillers before I was advised (if that is the right word) that I should be taking them regularly anwyay, in order that they can have maximum effect. I don’t like taking painkillers. I don’t like what they might be hiding.
I do understand that the continual drip of deterioration ends in a bad way, but I think now that I have mentioned it I will close the curtains and go and eat a special sausage roll, while watching The Searchers. We are going to have a phase of watching good films about 19th Century USA and its expansion. Any suggestions welcome.
Cancer 170
Posted on January 26, 2025 Leave a Comment
How many emotions and viewpoints can a person hold at one go? I am both optimistic about life and pessimistic. I feel my health is reasonably good and terribly bad. I am in pain and I am not in pain. I look forward to the future and there is no future. Orwell was right in 1984 about holding several views at the same time. I just sneezed and I am expecting my stomach to burst with the hernia, as it pokes out from below my ribs and the hernia belt I wear is not a very good one – the so-called better ones crush the stoma bag and lead to leaks, so which is worse, a growing hernia or a stomach smeared with shit? I would say you get used to these things after two years, but….
Two years. That is not bad. I am very happy I have managed to get to two years post-diagnosis. My next target is another birthday, and that is not far away (27 February, let me know if you need my address for the parcels). I will, if I make it, be 62. Not a great age, but I will look forward to 63, and that would be an achievement because I was born in 1963. Why do numbers equal achievements?
I haven’t blogged for a little while because we have been on holiday in the Netherlands. Not the first place people think of going on holiday but I am restricted. I haven’t managed to brave flying yet (I am working on it), so the Netherlands is a good alternative, especially as I don;t know the place very well. I went to the Airborne Museum in Arnhem – an excellent museum, Utrecht, Leiden, etc. Leiden has led to a commissioned article on the siege of Leiden in 1573-74. I will become a genuine historian.
We got back from the Netherlands last Wednesday. It is now Sunday and we are on holiday again, this time in North Yorkshire, at a very nice country hotel. We have a suite with four rooms and an open fire, and we are looking forward to good food this evening. I have to balance eating and stoma production – except I dont balance it. I just eat and put up with the stoma production. I like food and a little hole in my stomach is not going to stop me.
I am still reading War and Peace. It is 1812 and Napoleon’s army has reached Smolensk.
Back to my optimist/pessimist viewpoints. Even now the optimist generally wins (unlike Napoleon in Russia in 1812). I suppose I can’t help it. Always look on the bright side of life as Monty Python had it. I don’t know about always, but 90% of the time is not too bad. After all, things could be worse. I am not a Gazan or a Sudanese.
Cancer 169
Posted on January 13, 2025 Leave a Comment
In line with my, admittedly ridiculous, theory that I can’t die while in the middle of reading a book therefore I should focus on reading long books, I have just started War and Peace. I have read it three times, so I know the story pretty well. It is one of my favourite books. Of the Russians Dostoevsky is the cleverer, while Tolstoy is the better story teller.
War and Peace has a ridiculous number of characters, up to 600. The difficulty when first reading any substantive Russian novel (and there are many) is getting to grips with the character names, which are often alien to the British tongue. I am now used to the characters of War and Peace. I know them quite well. Tolstoy is very good on both war and peace. He fought at in the Caucasus and at Sevastopol. I visited the Malakov Redoubt in Sevastopol where Tolstoy fought. It has been preserved, though now it also contains large naval guns from the siege in the 1940s. He used his experiences to highlight the experiences of the ordinary soldiers fighting in Europe from 1805 to 1812. In peace he describes in detail the good and bad relationships between husbands and wives, friends, parents and children and so on. In the 1300 pages of my edition he has plenty of space to provide detailed accounts.
I am only on about page 200 so I am safely alive for a little while yet. Yesterday, visiting the Dutch home of the exiled Kaiser Wilhelm I, I bought Christopher Clark’s account of the history of Prussia – that is a 700 page monster. Any recommendations for long books welcome.
On the other hand I have been having some quite horrid symptoms over the last few days. It may be because I am on a chemo break, or it may be that your god doesn’t recognise the importance of long books, but I have had problems with my stoma, my flaky skin, more tiredness than usual, aching legs, even more broken fingernails than usual, painful fingertips, and all the rest of it. I thought I was the worst I have been but I looked back at a blog from last Christmas when we were in France and found a description of similar symptoms, so perhaps it is taking a chemo break that is the problem. On the other hand, hopefully the symptoms will go away in the next week or two and allow me a brief period of reasonable health before it all starts again in the middle of February.
I am still rubbish at taking painkillers. I know I should probably be having doses several times a day at the moment but I am taking Tramadol perhaps once a week and paracetamol perhaps every third day. I have always been averse to painkillers. As I have said before, pain is there for a reason.
Oh well, back to Bagration, Kutuzov, Prince Andrey, Nikolai Rostov and the rest of them being defeated by the French in 1805. Perhaps they will have better luck in 1812.
Dr Nigel Hunt 