Cancer 74
Posted on September 15, 2023 Leave a Comment
As usual, I am awake in the middle of the night. It is the standard pattern, go to bed early, sleep for 2-3 hours, get restless, get up, read/write, and hopefully go back to bed for another couple of hours before getting up for another day.
Tonight is a little different as I have a consultant appointment at 0900. I should be getting the results of my CT scan, and quite frankly, I am a little afraid. If one or more tumours are growing significantly then the treatment is failing and the options start to narrow. A different form of chemotherapy? Another operation? The final decline to death? I know the last option is going to happen but given my relatively good health over the last couple of months I would like to delay it as long as possible. I still have too much to do. I still have too much life to live.
My view regarding the fear of death is unchanged. I do not fear death. I fear dying. I fear pain. Once I am dead there is nothing to feel. I have always lived my life with the ‘Je ne regret rien’ philosophy. Choices are made, stick with them. Other choices were possible, but they were not made, so what is there to regret? Life can take many routes, and other routes would have been interesting – perhaps – but the ones we make are the ones we make, so live them to the full. I could have remained a bricklayer instead of walking off site on a particularly cold snowy day after reading a couple of psychology books (which is why I chose psychology. If I had just read physics books I would have chosen physics. It is all about timing). I could have chosen the University of Lancaster for a PhD when they were looking for a medium pace bowler and would have met an entirely different group of people in my life. I could have chosen a different topic for my PhD and spent my life in a cognition lab rather than talking to interesting people. I could have chosen not to enjoy wine and eaten fruit for breakfast – oh, better not go there.
If I am honest, when I started writing about life and death in this blog I was in some ways nearer death than I am now. I was really ill after my operation. Now I have people telling me I look better than I was before I was diagnosed with cancer (thanks drugs). I know it can’t last, but I want it to.
It is the middle of the night, the dark time when misery and depression can come to the fore, so let’s purge this negative feeling. On the positive side, the carcinoembryonic antigen (CEA) levels in my blood tests are coming down.With a reference figure of 0-2.9ng/ml of blood being normal, over 4 a little dodgy, 8 suggesting recurrence of cancer, and an exponential scale showing that in the hundreds the cancer is in charge, my score has gone from 5.5 at the beginning of chemotherapy to 2.8 now, so that is a good sign – for the moment.
Hopefully, the consultant will present some positive results, and the next 5 sessions of chemotherapy (10 weeks) can go ahead to add to the 7 (14 weeks) already completed. My hope is that once I complete this round (24 weeks altogether) I can have a break, have the PICC line removed, stop chemotherapy for some time, and go to France for an extended holiday. As Roberto Begnini’s 1997 film has it, Life is Beautiful – and the protagonist there was positive about life in a concentration camp. If someone in that situation can be positive, then so can I. The film might be fiction, but life is a narrative determined by one’s interpretations, thoughts and feelings, and in many ways also fictional. And I do tend to prefer longer novels.
Cancer 73
Posted on September 1, 2023 Leave a Comment
I have never really seen the humour in farting. While I am probably as childish as the next person when it comes to humour generally, fartingi s just not funny. At school several of the kids would fart then expect everyone to laugh. Many did laugh, but I always was a little disgusted by the idea that small particles of shit would stimulate my olfactory system. Inhaling the contents of someone else’s arse lacks that certain something that is required to make me laugh. It was, and is, disgusting.
It is much worse for me now with a stoma. I have absolutely no control of the output of my remaining bowel. If it is going to discharge shit, it discharges shit. Sometimes I am aware of it, sometimes I am not. If it is going to discharge wind it is the same. Usually no warning. Just like complete people it is sometimes silent, sometimes reasonably quiet, and sometimes very loud. It can be short or long.
I am not normally embarassed by things, but I am embarassed by my uncontrollable farts. I don’t like it, I want to disappear. Inevitably the people around me will either remain silent or will laugh. I don’t like that either – not that there is much choice. How can you respond to someone farting? We are all conditioned to laugh or remain silent when someone farts. The thing is, you lot can control – to a large extent – when you fart. I can’t. You can deliberately do it for a laugh (if you are puerile), I can’t. When it happens at the dining table it is worse. When it happens at a dining table in public it is even worse. In private with friends and family it is bad enough. They may understand I have no control, though they still often have the horrid laugh/silent reaction. In public people just think I am rude. I haven’t yet told strangers at a different table about my predicament but I probably should. It is just that I am embarrassed to do so.
I should probably avoid foods that generate wind, but this is not fully effective. Everyone generates wind, no matter what they eat. Dietary control (not a concept I have ever been fully familiar with) can only partly solve the problem.
The only advantage I have when farting is that it never smells. The stoma bag has a very effective filter. So, Mr and Mrs general public, you may hear me fart, but you will never smell me. You will never have that fine olfactory experience of particulate shit finding its way up your nose.
Cancer 72
Posted on August 22, 2023 1 Comment
I am sitting in the cancer ward with my drugs drip dripping into my arm for the 6th time. This is the last round of my first cycle. All being well I will start the next cycle immediately. This is the 11th week of my chemo. If I complete two full cycles I will have been undergoing treatment for 24 weeks, nearly half a year. At this very moment, and I know I have written about this very moment before, I am feeling somewhat lightheaded, my guts are churning and I am having some abdominal pain. Don’t tell anyone though, it is best if they don’t know.
I have had the lightheadedness before. It probably arises from taking both drugs at once at the fastest possible rate. If I took them at the slowest rate it would take around 5 hours plus changeovers, flushes, etc. At the fastest rate with both drugs it takes two hours, so I suppose it is my fault. The churning guts are probably related. It is probably because I am in general eating too much. I was weighed today and it has increased by 2kg since my last treatment. I need to follow that particularly effective diet called eat less, especially less cake – which is difficult when my other great pleasure, alcohol, has disappeared from my life for the last three and a half years. I need either alcohol or chocolate cake because I am certainly not going to take up smoking.
That leaves the abdominal pains, which have increased over the last few weeks. What these are is difficult to say, but perhaps bowel cancer is a clue. There are a number of possibilities. First, I am neurotic and imagining these pains. That is quite possible. Second, tumours are growing. That too is quite possible. I am stage three with fast growing tumours, though they were not fast growing between my operation and starting chemo. Third, the chemo drugs are eating away at the bits I don’t want them to eat away, eg my abdominal wall, liver, stomach, etc. That is also quite possible and may be an indicator that at some point I should stop treatment and let things repaid (though that is the point at which tumours may grow. Decisions, decisions). Fourth, and I would like this to be the reality, my abdomen has been battered and punctured over the last few months. Now I have started moving more, gardening, etc (I threw my old lawnmower into a high skip at the tip the other day. It really flew above my head height – hello the return of strength), my abdomen is protesting and saying that it is somewhat weakened by recent experience and I should be more careful.
I choose the last option.
Cancer 71
Posted on August 19, 2023 Leave a Comment
The cancer nurse I spoke to yesterday said I was boring. I am not used to being called boring. I am called many names that are not particularly pleasant but boring isn’t usually one of them. On this occasion though I was glad to be called boring, as he was referring to my most recent blood test results. Everything is where it should be. As I am getting ready for my 6th round of chemo my body is as normal as it can be. I have abdominal pains, I have some side effects from the chemo – well, a little diarrhoea and a lot of tiredness, nothing too bad – but generally, I am feeling reasonably fit and well. I was told the other day, as we walked up to the Lodore Falls in the Lake District that I had a spring in my step, perhaps for the first time in many months.
I am working on my novel. I wrote 5,000 words yesterday so my head hurts. I dealt with the training of the Parliamentary Army through to the Battle of Edghill. I won’t write anything today. I am enjoying trying to write something different to the usual academic stuff. Re my Applied Narrative Psychology book, I have a draft of the cover, and I am working through the proofs, so all is well for the January release. I am still wanting to complete any academic articles outstanding, so those of you who have such materials get in touch and let’s get things written. You know who you are.
We have had another few days in Northumbria, my latest favourite county, exploring the Roman remains and eating well. We also spent a night at a very nice spa hotel in the Lake District. I got told off by the nurses for going to a spa with a PICC line in and while undergoing chemo as my immune system is probably shot to pieces, but there you go.
My favourite hobby is driving, and re my cancer, one of the biggest worries is that I may get so unwell I cannot drive. That would be awful. I love driving around the country, and around other countries, but that is off the agenda while I am undergoing treatment. Also, I have not yet received my government paid for car. In case anybody is concerned that I am getting a government paid for car, then remember I am unlikely to get any of the state pension I have paid into for the whole of my adult life so I need to get whatever benefits I can while I am still here.
After the 6th round of chemo I will be having a CT scan to see what is happening in my abdomen. Hopefully it will show that no new tumours have grown, but who knows. If all is well then the chemo will continue for another 6 rounds, another 12 weeks. I am utterly sick of it. I don’t like being in the hospital for one day every fortnight. I don’t like having a bottle attached for the next two days. I suppose it could be worse.
Cancer 70
Posted on August 8, 2023 Leave a Comment
I am in treatment again. Number 5 out of 6. I have got them to pump the muck into me as quickly as possible so I can get away from the hospital as quickly as possible. The novelty has worn off. The two week cycle is getting tedious. These three days of treatment, instead of providing an ideal opportunity to sit and write, is just something I want to get over asap. I still have my 6 day reward to look forward to. On Friday we head to Northumberland again, our latest favourite place. If you don’t know Northumberland then you should. If I was entirely neutral about my favourite and least favourite counties, which I am not, then Northumberland would be my favourite county. It has great castles and houses, hills, Roman bits and pieces, lovely food and people, and not least, the lowest number of people per square mile in England. What is not to like?
I wonder whether I will have another 6 fortnightly treatments immediately after this one, whether I will have a break from treatment, be moved onto another treatment, or be seen as a dead end case where there is no point in further treatment. The way my abdomen feels most of the time I am not always able to generate my external positive optimistic self, though of course it could just be the effect of the drugs. I still haven’t lost my appetite. My weight is still increasing. Good or bad? No idea.
The hospital is so noisy. The beeps of the machines, the television in the waiting room, the radio in the treatment room (it is on one of those ghastly commercial stations which have adverts – shocking. Haven’t they heard of the BBC?), people who think watching videos on their phones with the sound on is somehow acceptable. Then there are the tattoos – so visual they are auditory.
I am still trying to write. I am enjoying studying my novel writing course and have just sent off the work for the 4th module. I am going through them at the rate of one a week – not bad considering I wanted to achieve one a month. I have also written 9,000 words of my novel about the Civil War. It might be the second draft of something I wrote 100,000 words on about 20 years ago but this is a total rewrite, this time I am trying to write in the 1st person. I write quickly but not often enough.
I have got the proofs through for my Applied Narrative Psychology book. That will be fun to go through, so I had better get on with it from tomorrow as I sit there with my damned bottle attached.
It is better than working – isn’t it?
See, the optimism – or the delusional thinking – still applies….
Dr Nigel Hunt 