Cancer 34
Posted on April 11, 2023 Leave a Comment
My apologies for not publishing anything for a while. I spent many days in hospital wanting to be home, and once I got home I have spent many days just sitting in my chair, reading books, going for short walks down the road, and generally spending all my energies on trying to get better. Now I have been home for a while I am wanting to get to the next stage, which is being able to drive, my favourite hobby. Unfortunately I am not yet able to drive as my wounds are not sufficiently healed. I was originally told 6 weeks. That will be 20 April. I am ticking the days off.
I have got lazy while at home, just sitting and healing. I have read a number of books, nothing intellectual, just good novels. I have watched a few films. I have listened to a few podcasts (though I still don’t really understand them). My main achievement since I got home is that I have submitted my book to the publisher. Assuming they accept it, there is now a long process of making changes, editing, sorting out references, deciding on a cover, and so on. It also means that if I have the energy I can get on with my campus novel – a stirring tale of life in the modern university. It has to be humorous though it must be a tragedy. I have not had a novel published so let’s see….
I have not been sleeping. The nights are the worst time. Until the last few days I have not been ruminating. I have just found it difficult to sleep, partly because of discomfort and an inability to turn over. I am getting a little better at moving, but not at sleeping; but then I have never been a good sleeper. My common pattern was always sleep at the beginning of the night, be fully awake and often out of bed for the middle hours, and then get to sleep again for a couple of hours before getting up. At least that gave me enough sleep. Now I am constantly tired. I nap during the day but it isn’t enough.
I am getting better now, so much better that I have started to dwell a little on the next stage of this process, and it makes me unhappy, as that is the cancer stage. I am fearful of finding out that there is nothing more that can be done, that chemotherapy will have little point, that I have grown a new tumour or two in the weeks since the surgery. I know I am usually upbeat with a few downturns, but at the moment there are an increasing number of downturns. I am usually cheerful in the day, but mornings can be difficult. I know that being upbeat is an important tool in keeping cancer at bay, but sometimes it is hard. I am hoping it is linked to my boredom at spending all my time at home (though it is so much better than being in hospital), and once I can get out, drive around the Peak District, visit interesting places, even have a cup of tea in a cafe, then these downturns will be kept to a minimum.
I have a telephone appointment at the hospital tomorrow. Perhaps I will know a little more then.
Cancer 33
Posted on March 30, 2023 Leave a Comment
I am a dead man walking. It sounds so dramatic, and I suppose at one level it is, but generally speaking I don’t feel that different to how I felt before I got the news that I was terminally ill. Currently I am trying to recover from my operation, which takes up most of my energy so I am probably not thinking normally – I know I am not. I keep forgetting words, I am tired, life is a little blurry. I am moving slowly. I am eating little. What resources I have are going towards mending my body. Perhaps if I recover from the operation then I might start to worry.
People keep asking me about the results of the biopsies taken durng my operation. I can only reply that there is nothing that can be done until I recover from the operation so I am in no hurry to find out. I am a little concerned that if I find out prematurely, and the conclusion is there is no point to chemotherapy or other treatment then I might give in to despair (though I hope not). I am fighting one battle at a time. Now is the battle for physical recovery from the operation. If I win this then I can start the battle against cancer.
If I ever thought about death and dying in the past, then I assumed I would be depressed, anxious, despairing, a whole host of negtive emotions. In reality I feel very little. I am not depressed, though one morning I did cry. I am not despairing. I am only anxious that I become so ill that I am forced to return to hospital. That is my most negative thought. I do not want to go to hospital; it frightens me. My thoughts regarding missing out on seeing things in the future do not get me down. This is because at the time I won’t exist so it has no relevance. That thought feels wrong, am I letting people down? It is a fundamental outlook, this matter of non-existence. It ensures that I do not fear death.
We don’t usually know we are going to die, except when there is a diagnosis of terminal illness, or sitting on death row in some uncivilised nation such as Iran or the USA. I suppose older people in the last stages of life know they are going to die. I wonder whether my reltive lack of concern is because I am just emotionally numbed or because I am struggling to recover from my operation rather than a clever attempt at a philosophical outlook on death.
Should I call it an existential crisis? I am not sure. I suppose it is because it is leading to non-existence. That is not a problem for me (unlike the fear of returning to hospital)., so perhaps it is not an existential crisis because I have little interest in whether I exist or not. If I exist, which I do, then I am happy that I exist and can interact to some extent with the world around me. If I don’t exist, which I won’t, then that won’t matter simply because I don’t exist.
When I reflect on death I keep coming back to my views on whether my life was in some sense worthwhile, as Cormac McCarthy says in his latest book, Stella Maris, “The best way to die well is to live well”. I agree with that, which is probably why I also agree with a comment someone made to a previous blog, comparing how I am reacting to The Clash song, I’m not down, written by Mick Jones as a response to some difficult times he had faced:
I’ve been beat up, I’ve been thrown out
But I’m not down, no I’m not down.
Cancer 32
Posted on March 28, 2023 2 Comments
I am happily settling in at home. Having been away not for a holiday or a work trip but because I was seriously ill (ok, am seriously ill) in hospital it does make me appreciate home and how settling it is. I have my own chair, far more comfortable than anything in hospital, I have home cooking, far nicer than anything in hospital, and my own loved ones caring for me rather than the wonderful but not emotionally attached people in the hospital. It makes such a big difference.
A graph can be drawn regarding the effectiveness of home and hospital. At the stage of acute illness requiring serious medical care the line for the hospital is high while that of home is low. As time passes and the illness recedes or becomes manageable the hospital line gets lower and the home line gets higher. There reaches a point where the lines cross. The hospital has done what it can but now the patient needs to be cared for at home. Once home then hopefully the rate of recovery increases. I have seen this happen in myself and in several of my fellow inmates. There is generally patience among patients while the hospital line is higher, but then an increasing frustration once the home line takes over.
I am still on around 40,000 tablets a day, from my heart tablets to my painkillers to my co-amoxiclav, along with the drugs for gout (I used to think gout was a really serious problem, but contexts change), and occasionally it can be difficult remembering what to take and when. At least in hospital the nurse would come round at the right times and feed me the right drugs. Now I have to think for myself, or have someone think for me.
My stoma has been playing games. My biggest fear is that I will have a repeat of what sent me back into hospital last time, a build up of (blood, bile, food) gunk in my abdomen that causes sepsis. I really do not want to go back into hospital for the same problem. What saved me was throwing up everywhere, but it was complicated by the various things that were done to me in the name of medical science, some of which I now believe were unnecessary. Still, it is not a precise science, I was very ill, and someone needed to do something. In the end though, a good vomit is a cure for many ills.
For the first 24 hours at home the stoma was not playing; there was very little going through what remains of my system, but this morning it seems to have got a little better. With my anxiety regarding hospital I am striking a balance between fear of eating food that will clog up my abdomen and fear of the stoma not working, though obviously the stoma is not going to work if there is nothing in there to process. Perhaps I should get on and eat some bacon sandwiches, roast dinners, chocolate pudding and the like. Except that I am never that hungry. I will carry on with the balancing act.
Sleep is difficult. I am sleeping a little at the start of the night, a little at the end, and dozing occasionally during the day. Last night I woke up and the central heating had stopped working. It is one of those silly Hive systems, reliant on unreliable elements such as the internet. I was trying to get it going myself, but fortunately Sue heard me banging around and I could sit, be clever and instruct her what to do. Eventually we got it working. I was wondering what would happen if we phoned British Gas and said we needed an engineer urgently because we have a dying chap in the house who is getting a little cold. Would they send someone out the same day? Yes, I doubt it too.
I am also looking longingly outside. I opened the back door to get a sniff of fresh air. It was wonderful. I think later I might get Jack to take me for a walk down the drive and back, if I can make the effort to put some shoes on, not an easy task, you know.
Cancer 31
Posted on March 26, 2023 Leave a Comment
I have now been in hospital for about ten days after my setback. Hopefully I will be out tomorrow. I am being released. I have reached that point where medical science has done its job and now the home environment will complete the recovery, as fr as it goes. I will still be on oodles of medication, but it can all be taken orally. I will still be limited in how far I can walk, but at least it will be to look at the garden rather than the entrance to the ward. I will still be limited on how much food I can eat, but it will not be hospital food.
One sign of being ready to leave hospital is attitude towards hospital food. Earlier, I thought there was a good menu and the food was pretty good. Now I can’t bear it. The food is not good. It is hospital food. Another sign is the view. I am lucky enough to have a bed by a window. I can see the sky and I can see boxy hospital buildings. There are no trees or grass. It is good to see the sky, watch its changes, enjoy the sun, the clouds and the rain. But now I want more. I want to see my garden. I want to see hills. I want to see trees. I want to be in nature.
One final sign that I am ready to leave is that I have started work on my book again. I don’t have far to go but I have struggled to get going. If I am out tomorrow I want it finished and sent to the publishers (CUP) by the end of the week. I still not live to see it completed but I can be more confident it will be completed.
The next 24 hours are critical. Nothing must go wrong. I must exercise, eat a little, and try to deal with my gout. Of course, if something does go wrong I will stay here, but I am beginning to go stir crazy. I know I have not been in long compared to many people, but I can only feel for my own experience. Back to the book.
Cancer 30
Posted on March 25, 2023 Leave a Comment
In my last post I talked about the family which changed my life. In this post I am going to talk about somene who had a profound influence on me, an influence that began when I was a teenager and has lasted to this day.
Andy Barlow was a year ahead of me at school. I didn’t really know him when we are young even though we lived in the same village. It wasn’t until we started catching the school bus at the same bus stop that I started to get to know him vaguely, and it wasn’t until I was about 14 when I started to hang around on the rec in the evening, classic adolescent style, and he was there as well (I think he encouraged me to go). It was at this point he began to be my mentor.
Up to that point I had not really been interested in music. My exposure was largely through Top of The Pops, which my sister enjoyed watching. I got to know many of the pop songs of the early to mid 1970s with little thought to their (often poor) quality. I was a slow learner. I was only just getting over treehouses, dens and damming streams. I still had my shed in our field – though that was an ideal place for a disconsolate teenager to get away from his parents and I kept it for years. But that is another story.
Going to the rec was a key stage in transitioning from childhood friends to adolescent friends, from childhood activities to adolescent activities, from not being interested in girls to being slightly more interested in girls, from not knowing Andy to knowing Andy.
Andy was interested in music, not just any old music, but punk. He talked about the groups and their music, he sang their songs, he went to gigs. It wasn’t long before I was heading to his house to listen to the latest single or album by somebody or other and I really enjoyed it. I took it in, and the thing about punk was that it was not just about the music, it was about the attitude, anarchy in the UK, Clash City Rockers, protesting about the government (No Maggie Thatcher aint no Government), protesting about the way things were, wanting change, often for change’s sake; not really knowing what to replace things with. It was about disorder, dressing to upset people, chaos – though I think those of us from villages probably didn’t really understand the city mentality that drove a lot of what punk stood for.
I started going to gigs with Andy. I was still at school so I had my paper round money (£1.70 a week for an hour a day six days a week) and what I could scrounge from my parents to get to Derby or Nottingham to see bands. My first gig was the Buzzcocks. It was so exciting, learning to pogo (if you have to learn that dance), spit flying around; but I think my political conscious started with my next gig, The Clash. This was a tour to coincide with their second album, Give ’em Enough Rope. This band meant something. They were angry. They knew society was flawed and wanted to change it. They had ideas. I was transformed.
While we went to many gigs one of the most important was Stiff Little Fingers’ first tour of the UK, timed to coincide with their first album, Inflammable Material (Perhaps the best punk album ever?). Andy and I couldn’t get in to the Ajanta (a rather seedy but brilliant venue). It was packed. People were climbing in through the toilets. We hung around the side door and the group arrived in a car. We informed them of our predicament and they invited us in. We sat with them in the dressing room until they went on, and somehow we were pushed into the main theatre. That was a group that understood society’s problems. They were from Belfast during the worst part of the Troubles.
There was a lot of entertainment at that time, good groups, poor groups, drinking beer. Forming a punk group of our own, playing a few gigs. I even got a job with the same firm as Andy when I left school. That meant I could afford gigs and beer (the 18 yr drinking age limit didn’t really apply then). Good times.
We all grow up, we have good times and bad, we drift apart, and within a few years Andy and I rarely saw each other. We went our own ways. He stayed in the building trade, I did what I did. I do remember saying to him as we listened to music in his house that my main ambition in life was to write a book. I managed that.
The punk that Andy helped me become is still within me. I am still unhappy with society. I still want to change things. I still want to do things differently to the way other people do them. This has applied across my life and I am not sure I would have been able to do this as effectively without that early important mentor of mine, Andy Barlow.
Dr Nigel Hunt 