Cancer 41
Posted on May 22, 2023 Leave a Comment
I have had my first oncology appointment. The consultant was very pleasant, appears knowledgeable, and answered such questions as I had. I need some further tests, particularly in relation to my dodgy heart, but I hope to start chemo treatment very soon. I had hoped they might say I can take a pilll every week and there will be no side effects, but unfortunately that is not the case. I will be on a fortnightly cycle. I will have a line in position throughout my treatment (which may last for life) which goes from my upper arm to just above my heart. On Day 1 I will be in hospital on a drip through this line. Days 2 and 3 I will be at home still being fed through the line. There are variousside effects that I may or may not experience, the worst probably being diarrhoea, which can be problematic with a stoma. Imagine having diarrhoea into a small bag that needs to be carefully detached every hour without spillage and another bag put in place quickly so that there aren’t further uncontrollable leakages (no sphincter for a stoma!). Fortunately diarrhoea treatment is available.
One of my worries was that more tumours may have grown since I was last scanned just after my operation. Fortunately the treatment for such growths is the same chemo I will be receiving anyway, so yah boo to current lumps.
If the first treatment doesn’t work there are other options.
My next appointment is Wednesday, when I will have my heart checked, my bloods taken, and I will meet the nurse who will administer the treatment. Hopefully I will also get a scan.
If the treatment does work the median survival time is 24-30 months, which means 50% of people die within a couple of years. As an optimist it means that 50% of people are still alive after a couple of years. I intend to be and to stay positive as much as possible. It does mean I am unlikely to be around for more than one more general election and I am extremely unlikely to see the UK rejoin the EU, but I can hope for the future of other people.
Cancer 40
Posted on May 21, 2023 Leave a Comment
It is the big day tomorrow. My first oncology appointment. It is hard to know what to think, and my feelings are contradictory. For all my attempts at rationalising the experience of dying of cancer I feel at times that my resilience is being battered and is in danger of breaking.
While I have no idea what will be said or discussed at the meeting tomorrow, I do run possibilities through my mind because my brain gives me no choice. I look at the worst case scenario; “The cancer is so advanced you have days/weeks to live,” and I look at the best case scenario, “We have very efffective treatments for this form of cancer which means you can live a nearly complete life for years to come.” I suspect the reality will be somewhere in between the two, though there is another worst case scenario, “You have a significant growth but another operation can deal with this.” I don’t want another operation. The last one nearly killed me. The problem is, if it is suggested that either I have the operation with a significant chance of a prolonged life versus no operation and death within weeks I think I am daft enough to choose the operation, even though the effects of the last operation are still to the forefront of memory.
I can feel all sorts in my abdomen, but I have no idea whether I am feeling cancerous tumours, the after-effects of the operation (abdominal muscle still recovering), the impact of a bad diet (I have eaten most of a bacon joint over the weekend and cake), the novelty of the stoma (you don’t need details), or just an over-active neurotic imagination creating pain and unease where there does not need to be pain and unease.
I still have no fear of death, only of dying. The difference between when I was still seriously ill from the operation and now is that I can more clearly see the things I would like to do while I am alive. I realise that once I am dead this will be irrelevant but I am not dead yet.
Orwell was right when he discussed doublethink. I would like to extend this to doublefeel. It is quite amazing how two or more entirely contradictory thoughts or feelings can be happening in my head simultaneously. I have experienced this before under normal circumstances, but the intensity when it is life or death is quite brilliant. It is the supernova of the brain world. At the same time I am optimistic and pessimistic. I am sad and happy. I am looking forward and I am looking back. I am planning my next book and I am planning my funeral.
In the end, there is little point in me fretting about tomorrow, but that is what we do isn’t it? Something important is happening so it tends to focus the mind, sometimes constructively, often not. The best thing I can do today is to get outside and enjoy the sunny weather. Perhaps go for a short walk (there are no longer ones), eat some nice food (or any food – that has always been part of the problem), go for a drive, read a book while sitting in the garden, or whatever I want.
Margaret Mitchell, said that ‘Gone with the Wind’ was about survival, about how some people can live through catastrophe. She asked what it was that enabled some people to survive terrible circumstances and others didn’t. She said that survivors would call the ability to survive ‘gumption’ and that her book was about those who had gumption and those who didn’t. I believe I have gumption, even though my thoughts and feelings are all over the place at the moment.
Here’s to gumption! I hope it survives in me after tomorrow. After all, tomorrow is another day.
Cancer 39
Posted on May 13, 2023 Leave a Comment
We are away for a week, partly to see how I get on, partly because as soon as we get back I have my first oncology appointment which is inevitably going to be life changing, whatever they say, and partly because we really need to get away.
I have mentioned before this phoney war stage, between the declaration of war – the diagnosis of cancer and the operation – and the main invasion (blitzkrieg? We will see. If so I hope for a Guderian) that is the oncologist’s role. This week may be my best for some time (forever?) because it is the furthest week from the operation and the closest point to meeting the oncologist. It didn’t start too well. I am not supposed to lift and carry things due to the weakness of my abdominal muscles which have been chopped through in various places and are also the holders of the cancer nodules. I thought I would be OK washing up. Nope. Afterwards I had an aching left abdomen and felt that I could be on the way to a hernia (as I have been warned about). I had to stand by while the car was loaded by the wife – guilt, pride, loss of masculinity? I did drive up here to the Yorkshire Dales but I was worn out by the time we arrived, and then guess who had to unload while I just sat there like the useless disabled person I am? And please don’t say anything about equality. Men are physically stronger and should do the loading and unloading.
I do flick around different moods. I am less optimistic than I was several weeks ago. I am a fraction of my previous self, I cannot walk as far as I could a couple of weeks ago, I can’t move as easily, I tire quickly, so I worry that my final decline is setting in.
On the positive side, I am returning at least in part to my previous verbal diarrhoea when with other people, but that is when I am sitting around and not trying to do anything physical.
I am confused.
I am becoming more particular in my reading habits. I only want to read good books, because there is a sense of limited time. If I start reading something and don’t appreciate it in some way I drop it and start something else. I am reading more longer books, which is perhaps an implicit thought that I can’t die without completing a book that I want to complete. I have just started Brian Aldiss’ Helliconia. I have enjoyed other Aldiss books, and I am around 100 pages (out of around 1200) into this one and enjoying it. I don’t know why, it has an element of fantasy which I generally abhor, but I quite like the idea of a civilization limited in length to the orbit of the planets, twin suns and a Great Year of three millenia. We will see.
I might need to go back to the Russian novelists who can be depended on for books of ridiculous length, partly because the characters have such long names. I have read War and Peace three times, the Brothers Karamazov twice, so that is enough of those. I might go back to Vassily Grossman’s Life and Fate, a good reliable account of Russia in the Second World War (I have also read Stalingrad, the prequel, but it is a little pro-Stalin). I started re-reading Solzhenitsyn’s Cancer Ward a few weeks ago while in hospital in a cancer ward, because I thought it was appropriate, but somehow it didn’t work. Perhaps the Gulag Archipelago? That should sort me out for another 10 years.
Aside from long Russian novels there are other possibilities such as Stephen King, who is vastly underrated by reading snobs. I have read most of his better known and some of his lesser known novels. He has a wonderful way of putting a little unnatural twist into real stories about realistic people. A great storyteller. The filmed versions of his books vary from incredibly awful (It) to utterly brilliant (The Shawshank redemption), but the books are better.
I might start on some of the classic novel sequences. I have read most of Zola’s Rougon Macquart series – thoroughly recommended for insights into scientific novel writing, and for life under Napoleon III. I discussed La Debacle in Landscapes of Trauma. The book described the Battle of Sedan, the Siege of Paris and the Commune. Great book. I cannot face Proust. I know that if I read the full sequence I will be guaranteed a long life, but I think it might be better to be dead. I got as far as the Madelaines. At least I think I did but I was utterly glazed over in despair. I refuse to try again. What about Balzac’s La Comedie Humaine? This is where I realise I am so ill read. I have never read a Balzac. Shame. There are so many good books to read in this world. Dumas? I have only read the Count of Monte Cristo. Another excellent (and long) book.
The title of this blog is Cancer 39, a reminder of John Buchan’s fast-paced pre-WWI novel. It is very short though.
What I am avoiding is the need to try and finish my own novel. It is a campus novel, focusing on the nonsense of academic life in the 21st Century (this is where I feel like Blackadder about to describe his own novel in comparison with Johnson’s dictionary). Perhaps I should spend more time on trying to get that finished rather than reading long books. I could then rewrite my Civil War novel….
Writing is a distraction. Even when I write about my feelings it distracts me from those feelings. Writing makes me think about how I feel and, as Jim Pennebaker and many others would argue, it makes me feel a little better.
Cancer 38
Posted on May 3, 2023 Leave a Comment
Well, there’s another achievement. Since I was sitting in the hospital ward I have wanted to get out and start running my life again. I am managing to write a bit and, as I said last time, work on my submitted manuscript, and we have been getting out for a drive and a bit of a walk. A couple of days ago I walked down by Cromford Canal – alone – just down by High Peak Junction, the aqueduct and Lea Woods. Yesterday we headed off for our first night away since all this began. We went to the Devonshire Fell Hotel in Burnsall. It was just for one night, to see how I got on. We need not have worried. I remembered the stoma kit, my heart drugs, the dressings for my wound (yes, it has not entirely cleared up), my spare drugs in case something hurts. All this alongside my books – I only took two, but came back with four, oh yes, and a change of clothes.
For those who haven’t been, the Devonshire Fell Hotel is one of the Duke of Devonshire’s hotels. While I object in principle to providing him with yet more money – it is akin to supporting Charles Windsor and his various moneymaking activities – principles sometimes need to go by the wayside when a nice hotel with good food is involved. Sorry. It is good for my recovery.
I had eaten a full bought meal before this trip, but not had a full breakfast. The meal was excellent. A starter of shepherd’s pies with home made brown sauce, followed by a main course of a duo of lamb (including lamb breast, the cheaper the cut the tastier the meat), with potatoes and vegetables. The only criticism was the gravy was too salty. I didn’t have a pudding. I am on a one man campaign against modern puddings. Can I say I find them too girly? Probably not, but I find them too girly. I want a proper sponge and custard, apple pie and custard, spotted dick and custard. You know the kind of thing, not lemon tart with curly bits of cream or Eton mess and such like. Puddings should have custard, and lots of it. I blame sticky toffee pudding for the decline in standards. It has stopped restaurants from producing any other sponge, and though I may be the only person in the country to feel this way I do not like sticky toffee pudding. It is too sticky, too toffee-ey and it doesn’t have enough (any) custard.
Anyway, all went well. I then managed to sleep pretty well, not properly waking up until 0300. I read for an hour, then found my stoma bag was full. I emptied it sitting on the toilet (ah, I remember those days), and then had a bath for another hour, reading my book, The Singapore Grip by J.G. Farrell, an excellent account – so far – of Singapore in the 1930s and 40s from the perspective of a rich merchant. I haven’t got to the point where Singapore falls to the Japanese but I expect it will be interesting. I have known people who were captured at Singapore in 1942 and they had a terrible time. The Japanese (can I say they were a cruel race? Probably not, but they certainly were then, and that was the view of many people for years after the war) treated the people terribly, murdering people irrespective of their nationality, treating everyone, whether they were Asians or Europeans, very badly indeed. The Chinese had been suffering under occupation for years by this time. They still haven’t forgiven them.
We went down for breakfast at 0800. I had cornflakes and milk, yoghurt, toast and marmalade and a full breakfast of egg, bacon, sausage, black pudding, beans, and hash brown, with additional sausage and black pudding from the other plate. It was almost like old times stealing from the other plate. I managed it perfectly well.
We then went to Bolton Abbey – I do like to see a ruined church, it signifies what I think of religion generally, though the reasons for the ruined monasteries are not the best – ‘I want a divorce.’ Really? We wandered around and I ate chocolate cake and ice cream at a cafe overlooking the Wharfe valley. Still no stoma problem. It wasn’t until we left that I learned Freddie Truman is buried at the abbey. I would have liked to see his grave.
On the way back we stopped at Salt Mill, Saltaire, Bradford. This very large 1853 mill, which closed decades ago has been done up and now hosts art galleries, shops, and cafes. The injection of cash into the area has helped regenerate the model village of Saltaire. The reopening of the railway station meaning that people can quickly commute to Leeds also helped. It does indicate that the injection of a bit of cash into a run down area can help with jobs, etc. Come on Government, why didn’t you think of that? For the arty people among you, the Mill is well worth a visit. It has a book shop with well chosen books. I had difficulty in the history section because it was so good, trying to choose between two 2022 books, one on The New Model Army and one on Stalin’s War. I chose the former, which will again sadden me when I think of the great opportunity we had in the 1650s to create the first modern republic. While at the mill I ate sausage and mash.
On the way home I had chocolate cake. When we reached home it was ham and cheese on toast. I await the stoma outcome. I assume it will be as normal and I will be awake and up sometime around 3-4am, but I will be prepared just in case.
This trip really felt like a bit of normality between having the operation and dealing with chemo, perhaps a short window of opportunity before I enter the next stage of this cancer experience.
The other book I bought was Workers in the Dawn by George Gissing.
Cancer 37
Posted on April 26, 2023 Leave a Comment
I thought I would change the subject and not talk about cancer and illness. Through this process of diagnosis and calamity I have been attempting to finish my book. I think I mentioned that I managed to work on it while I was in hospital and submitted the manuscript. I finished it early as it was not due to be submitted until June, so not bad timing despite the little problem of major surgery and a death sentence.
The problem is, for those who haven’t written books, is that while submitting the manuscript is a great feeling, comparable with that moment when a publisher accepts your proposal, the next stages are utterly tedious. If it was just submit the manuscript, wait a while, and then the shiny new book comes in the post then it would be good – but alas it isn’t like that.
I am sensible enough to keep up with my references as I write the book, but they still need to be checked, every one on every page to make sure that they are all there – and there will be some missing, particularly the ones that are hard to find. Because Applied Narrative Psychology is an academic book and I need to provide evidence for my assertions, there are around 350 references to check. Once I have checked it the publisher will check it and still find something wrong. I do like to try and catch them out occasionally. In my last book I referenced The Bible, written by God, and either no one noticed or they understood the joke.
The other day I received some attachments from the publisher, providing details of what I need to do now – there will be another list once the book is edited and formatted. The first one is the marketing questionnaire. This is hell. There is the easy stuff such as name and address. My affiliation was difficult. I put University of Nottingham but added that by the time the book comes out I will be either retired or dead. Let’s see (or not see) how they handle that). Then there are questions about me. What are my key achievements and prizes, particularly in relation to the material in the book? It even said don’t be modest. Right, I won a five a side competition in the first year at school (I was the goalie). I have a medal for completing a half marathon when I was in my 20s, and another one given me by the vice president of Iran. I was the secretary of the allotment society for a time, and the footpaths officer for the parish. None of this is relevant, so I wrote some gumph about narratives.
They also wanted me to write a short piece for librarians and why they should buy the book, and the blurb for the back cover. Then they wanted me to name people who would write something nice about the book, so I listed some people I know who are mentioned in the book in a positive way. Competing books? None of course, mine is completely original and nothing like it has ever been written before (no modesty there). Then it is a question about journals that might publish a book review about it, so I have to search through all the journals to find out which ones publish book reviews because nowadays nobody ever actually reads a physical journal, we all just search for relevant stuff.
Anyway, with those and similar questions it took me about a week to complete. I sent it off today and the Cambridge folk seem happy. They have already edited the blurb etc to make it sound much better than what I wrote so there is a winner!
The next stage, the one I am on now, and the reason why I am writing a blog instead of getting on with my work, is to complete an Excel spreadsheet listing the titles of the chapters, the authors of the chapters, up to 10 keywords for each chapter, and an abstract of up to 200 words per chapter, along with keywords and abstract for the book as a whole. So I have to write another 3,000 words! I have just finished chapter 3.
Another task was to provide ideas for the cover. Given my aesthetic ability is about as good as my written Japanese someone else really should take this on. I suggested, vaguely, some sheets of written stuff scattered about. Lo and behold that picture came back to me and I think it will be going ahead. Achievement!
The easiest element was obtaining permissions for the illustrations. There are no illustrations. Achievement!
Finally, I have just received an email saying that the manuscript is looking good, so as soon as I sort out the references they can get on with the next stage. I thought they might have comments about some elements of the manuscript such as my comments on multi-culturalism but no, perhaps that will come later when the legal boffins have had their beady eyes on it.
So my top tip is don’t write books. Not only do they take forever to write, edit, etc, most of them don’t make much money. In the 31 years since my first book was published I can only say it is a good thing that I have had a paying job as well.
So why is it that If I can succeed better than Knut and stem the tide of cancer I want to write more books? I will never learn.
Dr Nigel Hunt 