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.
Cancer 214
Posted on November 11, 2025 Leave a Comment
It isn’t all looking rosy. I think this period is requiring all I have in keeping that glass half full. This is a period of waiting. I will be seeing the consultant on Friday. I am aware there is going to be a multidiscipplinary meeting to discuss me, and the only reason that needs to take place is that the CT scan has shown changes. Changes mean growth, and growth can mean continuation with the same treatment, a change of treatment, or a giving up of treatment. I would like the current treatment to continue. I am used to it, I do not have particularly bad side effects, and I only need seven more rounds to get to 50, which seems to me quite a lot and worthy of a party. Unfortunately I don’t drink and can only put up with small groups of people for a relatively short time so it won’t be much of a party.
Changes also mean a reflection of my neurosis, so perhaps there is no growth and things will carry on just as they are for the forseeable future. It has been an ok couple of years, let’s make the next year ok.
I am eating a little more than I was a few days ago, but nothing like my usual amounts. I am not getting particularly hungry. In my neurotic world the growths in my abdomen are crushing my stomach so I have little room for food intake. The worst part though, is the feeling down there that I really want to go to the toilet. Obviously I can’t, but I think the tumour that I know is down there has started to grow, wrongly informing my system that I need the toilet. It is constantly painful, and is exacerbated by a bad lower back, which means sitting and lying in certain positions is uncomfortable. I am starting to use more morphine which is what I definitely did not want to do. I don’t like painkillers at the best of times, pain is there for a reason, but I am quickly giving up that principle in order to reduce the pain.
I can still drive. That is a good thing. I can still write. I am taking a quick break from writing my thesis to write this blog. I am reasonably comfortable on my office chair.
Apologies for any repetition across blogs. No, scrub that, I am not apologising. All you are doing is reading something that at worst is so boring you give up reading, I have to sit here wanting a toilet that cannot be. Trust me, a dose of morphine is nothing like as satisfying as a good crap.
Cancer 213
Posted on November 6, 2025 Leave a Comment
It seems my last post disturbed a few people. Tough – try having my disturbance levels! I always said the blogs would reflect my mood and how I feel. I do feel a little better than I did before. When I feel ill I am supposed to ring the Rapid Response LIne available to people with cancer. That way professional staff can determine if there is a problem and whether should I go to the hospital to get it sorted out. I am bad at phoning this line. Usually, if there is something wrong, I stick my head in the sand and hope it will go away, which it usually does. I get nagged, sorry, encouraged, to ring this line more often, but I don’t like phones.
Anyway, after this latest pallaver, I said I would go to the hospital and get checked out. I booked for a line flush at the CDU – the portacath has to be flushed every four weeks. I can’t do it because it involves jabbing a needle into the unit in my chest, and a) I can’t see where it has to go in, and b) I am not sure they would trust me with this needle. The flush was fine, but we had a conversation as I told them about my symptoms. They told me in no uncertain terms to go up the corridor and report these symptoms which, as I am frightened of the nurses, especially when there are several of them picking on me at once, I did.
This inevitably took many hours. You don’t need to know all the details except I did nearly finish my Nevil Shute book. If you haven’t read Neville Shute you really should. He is a great storyteller and really brings home the world from the 1930s to the 1950s. He was an engineer who worked on the R100 under Barnes Wallis and then became chief engineer. Later he worked on the Airspeed Oxford, a key training aircraft in WWII. After the war he turned to writing full time. His best known book is On the Beach, but read any of them.
Sorry, I got distracted. While in the unit a nurse fell out with me because I wouldn’t put a mask on – they thought I might have covid. I don’t wear masks, breathing is difficult enough for me without covering up my airways. I was tested for covid. The third time I have been tested. It is hell. Having those telegraph poles up my nose is quite unbearable. I want to cry like a baby. I would rather have any of the cancer-related interventions than a covid test (well, a major operation might not fall in that category). I don’t have covid. I never have had covid to my knowledge. I also had my bloods tested. All fine except some immune system markers were high – presumably I am fighting an infection. So perhaps I have an infection. Who knows? They looked at my latest CT scan and suggested vaguely there may be a little growth of tumours in my abdomen. According to my feelings of having a marble bag, I think little growth means big growth, but it is best not to worry about that until I get the results properly next week. As I have (probably) said before, a little knowledge makes no damn difference to the cancer.
There we are, no reason to change my habits regarding phoning the Rapid Response Line.
The doctor dealing with my case said he had been in the unit for 2-3 years and not known anyone who had more rounds of chemo than me (43 in case you have forgotten). Now, I know I am way off any real records but that was encouraging. Christ knows what I have cost the NHS so far.
Given that I can’t breathe, eat, and have marbles in my abdomen, I have managed to undertake a few tasks today. I went to the station to see people. I then came home, put up some external lights, chiselled a door so it would shut, and wound up the hose pipe. And I wrote 1000 words on my thesis. All in all a good day. I am getting sausage and Yorkshire pudding with onion gravy later (not toad in the hole as the toad is not in the hole but next to the mound. I hope I can eat a lot of it but I am not optimistic.
Finally, I have a new analogy regarding the fight between my body and cancer. In January 1879, the British Army fought two battles in two days. In the first, they were overwhelmed by the Zulus in the battle of Isandlwana. In the second, they defeated the Zulus at Rorke’s Drift. On both occasions, they were massively outnumbered. I am the British Army, and the cancer is the Zulus. While I am fully aware that I am fighting the battle of Isandlwana and will eventually lose it, I like to think (in my positive moments) that I am really fighting Rorke’s Drift and in the end, despite overwhelming odds, I will defeat the cancer.
Delusional I know, but it gives me a chance to watch both Zulu and Zulu Dawn again.
Dr Nigel Hunt 