Cancer 219
Posted on December 4, 2025 Leave a Comment
The endless cycles of cancer. I think I notice changes much more than when I was well. In my state I need to notice what appear to be small changes because they might have massive consequences. This at least partially explains the roller coaster nature of my life. I was driving to have my blood test this morning with a lot of abdominal pain. After the test (which took three goes with the needle) I drove home, and during that 25 minutes my stoma bag filled, and I mean filled. If I had been going much further I would have needed to empty it before it exploded. The toilet looked like a chocolate bomb had hit it. A small animal could have walked across the toilet without getting wet, as it looked blocked. Are you getting the image? It was a lot of stuff. I must now be cleared from my time of constipation.
The thing was I ended up very tired and falling asleep this morning. There are a number of factors. I slept very little last night. I was in pain and needed to sit up rather than lie down. so I did. Blood was taken from me – not a lot but enough. My bowels emptied with a lot of fuss. These elements together tire me, make me think I am going to have yet another unproductive day. Oh yes, I am having my flu jab shortly, so that will probably knock me about a bit.
It is this constant battering of my body in so many different ways that I find increasingly difficult to deal with. Most of the things are minor, and alone I wouldn’t think about them, but I can have several things going on at once, and then in addition I am in paid, and I am a little sick of it. I know I am never going to be well, but it would be nice to get as well as I was on my previous treatment a few months ago. I was limited but nothing like this. It is increasingly difficult to get on with any mental work, let alone physical tasks The other day I managed to change the pull cord for the bathroom light, which involved standing on a stool. This morning I was to line the Christmas cake tin but I couldn’t finish it because I struggled to remain standing for the time it took. I just needed to sit down.
I ate a full portion of a bought-in shepherd’s pie last night, along with a few Brussels. It was too much, but I did finish it. That was probably a mistake. I still struggle to see a plate unemptied. That is the power of sitting at a childhood dining table, thou shalt not waste food. It presumably arose from the war experience of my parents, though it might have been because they didn’t have a lot of money and so food should not be wasted. It was rarely a problem as a child because I needed five or six meals a day to enable me to be as active as I was. It is not like that now. Being active means planning to stand up from my chair and go to the toilet, or, as is the case now so I had better stop writing, walk all the way to the GP surgery next door for a flu jab. I hope I can manage to walk home again!
Cancer 218
Posted on December 2, 2025 Leave a Comment
Tom Stoppard is dead. I didn’t know he was Czech until the other day. He wrote Rosencrantz and Guildenstern, an absurdist play based on Hamlet that I somehow liken to my two forms of morphine, zoomorph and oromorph. I don’t know which is which, but in an absurdist world it doesn’t really matter. In the play it is difficult to distinguish between Rosencrantz and Guildenstern, whereas in the real world the zoomorph is slow release morphine that I take twice a day and oromorph a bottle from which I glug when necessary (actually, I don’t. I use a syringe, clearly marked with the correct dosage, it just sounds better to think I just upend the bottle and hope for the best).
I am using increasing amounts of morphine, both types. I have tremendously unpleasant things going on in my abdomen which scream at me regularly and ensure I never get a full night’s sleep. On a good night I sleep for an hour or two, wake for a few hours, and then sleep again for a few hours. On a bad night I don’t sleep. Everything is slowing down now, it is all starting to coalesce around my chair. Yes, we made it to Devon at the weekend, but I am shattered now. I just want to sit. When I say coalesce around my chair I mean it literally. My junk seems to gather.
My latest publication came out yesterday. It is an article entitled the ‘Siege of Leiden, 1573-74′, published in the magazine, Battlefield (The magazine of the Battlefields Trust and the Scottish Battlefields Trust), vol 30(1), pp 14-17. It is colourfully illustrated with maps and paintings of people such as Fernando Alvarez de Toledo, 3rd Duke of Alba. If there is anyone who doesn’t know about it, the siege took place during the 80 Years’ War between the Dutch rebels and the Spanish. Let me know if you want to read it!
In Hamlet, most of the key characters die, a bit like people having cancer. Is that absurd? Not really. What I think is absurd is the way people reference death. They talk of ‘passing away’ or just ‘passing’. On gravestones there is the nonsensical ‘went to sleep.’ I have a rule. I know I can’t impose rules from after death but I will haunt anyone who breaks it. I want no references to passing, passing on, ‘lost’ or any other nonsensical term for death. If you are talking about me and death (and you had better talk about me) then you say dead, death, or similar. I will be dead. I will not have passed from one place to another, from one life to another. We will have no absurdities here, thank you.
Cancer 217
Posted on November 24, 2025 Leave a Comment
You know that feeling, that feeling that by definition most of us have never had? I have been getting a bit of that feeling over the last few days. Dying, that it. We usually experience the process of dying from the outside, watching others as they go through the process. I have this rotten feeling that I am experiencing some of those symptoms that belong to the last weeks of life.
What are these changes? I am still unable to sleep much at night, but now I am starting to sleep during the day, sometimes when people are talking to me. My appetite has severely diminished. I am eating far less than the wife, and missing meals altogether isn’t a problem. I am still drinking, but sometimes not enough as I get thirsty. It is common for bowel and bladder movements to become less common. Guess what? They are. Mentally, I am getting confused – I have been for some time, but one of the other mental symptoms is hallucinations. Last night I had three. I have had several more over the last few days.
Does this mean I am dying? I haven’t got a clue. I haven’t tried it before (well, perhaps when I was failing to recover from my bowel operation). I might be dying, or I might just be having a bit of a low time. Some call it depression, I call it glass not quite half full. My treatment starts again tomorrow. It may work for a while, it may give me more time, or the side effects might be so bad I don’t even want to continue. Who knows? I don’t, and that is one of the more difficult things. I know I am going to die soon, but I am not sure when. I think I would prefer to know exactly which day I am going to die. Then the speculation can cease.
Cancer 216
Posted on November 21, 2025 Leave a Comment
It is back to the numbers game. I am starting my second line treatment on Tuesday, after the failure of the first line treatment. I was lucky I suppose, the first line treatment lasted two years and three months, which is longer than the average. I am now moving on to Folfox, which basically means stopping the irinotecan and replacing it with oxaliplatin. There are statistics for the effectiveness of Folfox as a second line treatment, and they are glum reading for anyone who wants to be immortal. As I realise immortality is something only achieved after death (no I haven’t started believing in any god or heaven nonsense) – bring it on. No doubt my books will sell in their millions when I am dead….
The median overall survival is 11-15 months, which means I might not have to endure another Christmas after this one, with a 13-30% treatment response rate and median progression-free time of 5-7 months. What do these figures mean? I plan to mix my averages and get to the extreme end of the normal distribution curve, which means I might have to endure another Christmas after all.
The worrying thing, if I worried about things, are the side effects. The most serious is that I will be very susceptible to the cold; I will need to wear gloves just to go into the fridge, and during treatment I can’t have cold drinks. I am thinking of going for an ice cream this afternoon, even though it is frosty outside. The side effects include:
Allergic reaction, the drug leaks outside the vein, throat spasm, risk of infection, bruising and bleeding, anaemia, diarrhoea, effects on the heart, difficulty breathing, feeling sick, numb or tingling hands or feet (neural neuropathy), sore mouth and throat, hand-foot (palmar-plantar) syndrome, stomach pain, loss of appetite, changes to taste, feeling tired, hair loss, muscle or joint pain, headaches, skin changes, effects on the liver and kidneys, raised blood sugar levels, nail changes, effects on the lungs, effects on the eyes, bladder effects, constipation, hearing changes, effects on sleep or mood, and effects on the brain.
There are several pages more of the effects, but I don’t want to bore you. I have several of these already, and several that occur during or just after treatment. There is a point at which I understand why people say they are going to stop treatment, even though that means imminent certain death. When the difference is treatment that has many side effects will keep you alive just a few months longer than not having treatment there is a certain logic. We will see. At the moment I am torn between wanting to establish records for longevity and just giving up. We watched Downfall last night where a doctor gave Hitler clear advice on ensuring a suicide attempt is successful. Anyone got a cyanide pill and a revolver they can lend me?
Enough of that. I am cracking on with the MSc. I sent a rough draft of the Introduction to my supervisors the other day. This morning I am going to get on with the method. I am not sure what historians write for a method. Given some of what I have read I don’t think they always bother. Still, the scientist in me demands that the methods are clearly explicated so clearly explicated they will be!
If I do last another 12 months then I should get the MA finished. A better strategy will be to finish it as quickly as is reasonably possible, assuming I stay well enough for long enough – and chemobrain doesn’t eat all my neurons.
Cancer 215
Posted on November 14, 2025 Leave a Comment
I sawthe consultant today, well, I saw someone standing in for the consultant. The results were not as bad as I expected them to be. As so often there are positive elements and negative elements. My CT scan showed there was some growth and an MDT meeting agreed that it showed my chemotherapy was not working any more. The current nodules experienced some growth and there are new nodules around the abdomen.
The options were two forms of chemotherapy. One was a tablet and one is Folfox. I will be starting on Folfox in – probably – ten days time. The procedure is similar to my previous chemotherapy, except I will now have oxaliplatin along with fluoruorocil and calcium folinate. I will still have a bottle attached for two days. Inevitably there are a number of side effects that I may or may not get, but now I am not meant to have cold drinks, use gloves when taking things from the freezer, and make sure I don’t breathe in cold air – great for winter. the rest of the side effects are the familiar ones relating to nausea, tiredness, diarrhoea, loss of appetite, pain, sore mouth, throat problems, heart problems, and so on. I hope I will be lucky like I have been so far.
My worry now is that the new drugs are not going to work. I won’t find out for several months, until the next CT scan. My intention is that they will work, and that after 43 rounds of the previous chemotherapy I will have at least 43 rounds of the new one (it may be unlikely but my glass remains half full).
I have also had my morphine dosage increased. Personally, given the pain, I think a straw would be best for the liquid in the bottle, but that might not be acceptable to the medical community. I now take 30mg in pills during the day and an unspecified liquid amount generally at night. I have had virtually no sleep for three nights due to the pain presumably caused by the tumour in my rectal area making it feel like I have severe constipation and a bad back. It is not intense pain like gout, it is dull but continuous, and difficult to sleep through.
The mess over the last few weeks, the pain, the uncertainty, has made me think of my funeral again, especially the music. It should be uplifting (except for the inevitable Joy Division song) and perhaps political. Ideas on a postcard please….
It is a shame people miss their own funeral. It could well be the point at which more people than ever before or afterwards are at least reasonably positive about the deceased. Perhaps we should try it out while I am alive. I can happily lie in a coffin listening to everyone being nice about me, though I think I would get most pleasure knowing people will have to carry my dead weight. I must make sure I don’t lose my appetite.
Dr Nigel Hunt 