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.
Cancer 29
Posted on March 24, 2023 Leave a Comment
Inevitably through all this I am reflecting on so many aspects of my life, looking back at what I have done, the good things, the mistakes. I make no claims to have lived a perfect life. I know I have upset people badly at times and I am sorry that has happened, but I suppose being someone who has generally been honest in life (again with some serious exceptions) that is going to be the cut and thrust of life itself.
Looking back I inevitably think about some of the people who have influenced me, who have, for some reason, changed my life. I don’t usually mention names in this blog, but I am going to make an exception here. I hope I am not upsetting anyone by doing so.
As an adolescent we are influenced by many people, our parents, other members of the family, friends, workmates, and so on. I was enormously influenced by an individual, and by a family.
The family is the Ferozes. Throughout my adolescence I spent a lot of time being with and living with the Ferozes, mother, father, three girls and grandma. My family was working class. They were middle class. They were middle class in a special way. Looking back they acted more like the upper classes. They behaved in ways they thought was right regardess of what others might think. Their large house always smelled of dogs and horses, everyone was – to my eyes – both posh and very laid back. I didn’t realise that posh people could be so normal. I was a friend of the girls so I was made very welcome by the parents. As I got older I started to have meals there, sleep there, I even had my own key – which I once forgot so I crawled in through the dog flap (dog flap? How posh and not posh is that?) after a few beers, went to the toilet and when I emerged there was a policeman in the hall. The neighbours thought there was a burglar.
It was here that I learned that you coud be well-mannered and keep your elbows on the table. It was more important to have something interesting to say. I secretly admired the Dad. I wanted to be like him – indeed later, after he sadly died of cancer I was given some of his clothes which I wore for years. He was a GP who was (quite rightly) incredibly proud of his daughters. He also sat in a large leather chair. His chair. You could sit in it when he wasn’t there, but not if he was. Then we leaned over his shoulder, helping him with the Telegraph crossword, answering the clues in the wrong order which really annoyed him (not really, he rarely got annoyed. He would just smile indulgently at his beloved daughters whatever they did wrong).
The Mum was a second mum to me. That is not to denigrate my own mum, why shouldn’t I have two? She would fuss around, offering advice, coffee and food, asking me to help out with this or that.
Grandma’s biggest contribution was language. When I decided to leave the building site and move into academia she made it very clear that I could not move into the bigger world with my broad Derbyshire accent, that I had to learn to speak ‘properly’. She was right. I did tone down my accent, and in later years I would test some of my foreign students. When I spoke the new normal they understood me fine, but if I put on my earlier accent they would just look at me in a bewildered fashion. Good old Ivy.
The girls had a huge influence on me. We were never lovers, more like brother and sisters. Why did we never become lovers? I have no idea, perhaps it was because from the start we were friends who drifted towards family and it would be a little odd to go out with your sister. It was probably a good thing. We went out, we shared music, we went to gigs, we did the normal things young folk do.
There is no way I could have achieved any of the things I have in my life without the Ferozes. It is difficult to say exactly what it was, but it was the putting elbows on the table, it was speaking in a way that is intelligible to others, but on the grander scale it showed me how to be middle class in a good way, no posing, no looking down on other people, doing what you want to do within the constraints of not hurting others, trying to do a little good, and definitely not posh. Of course others helped with these things, but the Ferozes are an essential component of what I am today. Their influence is immeasurable and I am so grateful to them.
Cancer 28
Posted on March 23, 2023 1 Comment
I am writing fewer posts at the moment partly because I need something to say and partly because I have been, and still am, fairly ill. A couple of days ago the medical staff were worried about me but large scale projectile vomitting improved things considerably.
While I don’t have a tube to my stomach and can officially eat I don’t feel like eating, which does show I am ill. As a postwar baby with wartime parents I was brought up not to leave anything on my plate, and that food will always make you better. Not now. Part of it is that I dare not eat for fear of throwing up again and being forced to go through things which, to me at this point, are almost Auschwitzian medical procedures, simply because I don’t think I can endure much more.
I can endure the patience required to get my gut working properly. At the moment it seems what I do eat is being blocked somewhere in the small intestine, building up, and then being thrust backwards out of my mouth. But some material is getting through because my stoma does get some action. Sometimes ot is liquid, but there are solids too. My theory is that with patience, little food, and no medical interference, the gut will start working properly.
If there is medical intervention in the form of tubes, operations, etc, then this will set me right back and I may never get home to enjoy home, garden, family and sunshine.
Dr Nigel Hunt 