Cancer 18
Posted on March 11, 2023 Leave a Comment
I am having a bad night. It is 2am. I feel I have only weeks. At most levels I accept it, but sometimes the other side takes over. I have some pain and discomfort now, the vital signs are all over the place. I want a piss but I have a catheter so it drips into the bag continuously, frustratingly. My back is very itchy. I want to scratch wherever there is an IV in my body. They are on my hands and in my arm. There are drains from my wounds where I have been stapled and stiched back together. My stoma is a large hole just below my left ribs which tonight started farting. It was a shock. I have no control over it. No one will want to go to a restaurant with me. The bag only contains liquid so far but the nurse says faeces will gather tomorrow. I have started calling it a mangina because it is a front hole acting as a back hole but the image doesn’t work because the mangina is a sewer pipe, not a place of desire. Perhaps I should call it my front sewer, or perhaps a manhole. I have a needle in an artery and wires collecting heart information. I have a clip on my finger and my feet won’t stop dancing against the bed foot as I try to scratch my back with the mattress that is too small for me. I become more agitated. There is stereo snoring now across the way. I hate snoring. The alarms are continually beeping some coded signal that nobody responds to because they continually beep. The staff do respond to our personal beepers. The other people in the room atill snore, set off their alarms. The screen shows they have stopped breathing or have no heartbeat. No one does anything because the cause is a slipped clip, a tube blocked by a hand. Sleepers talk, wimper in their sleep, moan, and wake, sleep and moan, snore and are silent, like now, except me. I don’t like it. I want it to go away by the morning, or preferably sooner. It is now quiet, but not in my head. This bed is too short. A manhole cover, a better name for the stoma bag. Sewer, the hole itself. It is 2.09am. Time creeps when you are not having fun
Cancer 17
Posted on March 10, 2023 1 Comment
If I am a little less positive than usual today it is because my prognosis is not good. The surgeons removed the original tumour from the bowel. It had grown a fair bit, but beforehand they found a second tumour outside the bowel attached to the peritoneum. It was about 12cm x 12cm. At the time of the CT scan there was a ‘swelling’.They abandoned the robot surgeon and went for the big chop. Also, there are a largish number of nodules on the surface of the peritoneum which could not be removed.
While we do not yet know the details because we need the results of the biopsy I will be going into palliative care. I understand that people can be in palliative care for long time, but given the aggressive nature of the tumour that was removed I am not optimistic that this will be the case here. I think, but with no real evidence, and apologies for being dramatic, but I believe that I have had my last birthday. I may be wrong, I hope I am wrong, but we shall see.
The plans in my head, discussed a little with Sue, may not come to fruition. I have several ideas for holidays; a French holiday with the kids, driving around the Baltic Sea, driving along the Danube, or visiting the Former Yugoslavia for the first time since around 2000.
I also have plans for several books. I am trying to finish my latest, Applied Narrative Psychology (Cambridge University Press). There is one more edit before I send it to the publisher. If I don’t hsve time Sue has promised to work with them to get it pubilshed and CUP have agreed in principle. I have further ideas, some partially written. There is Bond of Blood, a 100,000 word novel about families split during the Civil War around Wingfield Manor. I have around 30-40,000 words of a (hopefully) humorous and tragic novel about work in a modern university. There are about 15,000 words of a novel about the Battle of Ashbourne, part of war where the UK has been invaded.
There are a couple of history books. The first is about the social history of Wingfield Manor, discussing not only the key events such as the sieges in the Civil War, but the people, from Immanuel Halton, a mentor of our first Astronomer Royal, John Flamsteed, to Colonel Danby, Commander of the royaist forces in the second siege in 1644, who was shot in the face by a deserter as he tried to sneak out of the manor dressed as a woman.
Finally, there is a book, jointly authored with Sue, about Sebastien le Prestre, Marshal Vauban, engineer of a series of sometimes massive, sometimes small, forts for Louis XIV in France. They ringed the country, providing an effective interlocking system in vulnerable areas, such as facing north towards Belgium, east to mainly Germany and Italy, south to Spain, and then at key strategic points along the Atlantic Ocean, The English Channel and The Mediterranean Sea. There are several hundred of these forts, some newly built, others reconstructed to Vauban’s designs. There are clear patterns of building, from covered walkways to bastions. Vauban had an ideal fort, starshaped with the ideal being Neuf Brisach, but usually made the best of natural features, hills, mountains, rivers or the sea.
Vauban was unusual as he was both beseiger and beseiged at some of these forts (not at the same time!).
Seiges are analogous to cancer. The body is the castle and the cancer is beseiging the castle. I do hope that my body has the strength of Besancon, built on a large hill in the east, with a fortified town at the bottom (where interned British women were held by the Germans from 1940, and I bought Sue’s watch un 2015), or La Rochelle in the west, that held out against the English army of the Duke of Buckingham in the 1620s. That is a story of the weak leadership of Charles 1st, which brings us full circle to the Civil War mentioned earlier,
What is Sue’s role in this book, as it is difficult to see her wanting to write a book about war? She is the illustrator. Her style is ideal for showing the main elements of these forts, and I would love to see this as our final (or preferably not final) big project. It also allows us to see France for what it is to us, castles to me and food for Sue; different interests working in unison, as a true partnership.
Cancer 16
Posted on March 10, 2023 Leave a Comment
Apologies in advance for errors and general weirdness in this blog as I am writing it on my phone a few hours after waking up from the operation.
‘You must accept your treatment not just with faith but with joy! That’s the only way you’ll ever recover.’ Alexander Solzhenitzin, Cancer Ward.
Until going for an operation I had very limited knowledge of what actually happens. I realise many people go through the process every day, but I think many people are as ignorant as me.
I am writing this as the day progresses, though I will probably stop when I am being operated on.
I was due to be at the hospital at 0700, but being me and due to the snow we arrived about 0615, so after the two of us waited in the corridor until 0700 we said goodbye and I entered for processing (come on, dom’t compare it to Birkenau) and for the initial waiting period, TV blaring while trying to read Solzhenitsyn. First, blood was taken. I then spoke to the anaesthetist and the consultant, both of whom provided details of what was happening, answered questions, and were generally checking that I was fit for operating on. Being numerical, I am interested in risk, so it is 1.47% risk of death within 30 days, 10% chance of serious compications, and under 10% risk of having a stoma. I feel better knowing these numbers.
I informed the consultant about my sister’s funeral on Tuesday, saying that I would like to attend if possible but obviously my care takes priority. There is a chance I will be out on Monday if all goes well and my bowel is working. Alternatively I may be allowed out for a few hours for the funeral, or let out but have to return for a review.
It is likely that my operation will start late morning and will take some time. I may be waking by 1800, after which there will be an hour on recovery and then either the ward or step down (the latter if there is a problem). Both the consultant and the anaesthetist are happy with my fitness and general condition.
The unusual part was that after these chats the consultant turned up with two medical students and asked if they could have a chat with me. They were Nottingham Medical School 3rd years, ie, where I work. Fortunately I don’t know them! They will be observing during the operation. We discussed dermatology, PhDs, medical projects, and their research topics.
I had my clothes, phone and, horror of horrors, my books taken away, I was transported to the theatre area, and was prepped by the anaesthetists (I had two of them), with several needles in my hands, and injections through my spine.
Apparently as I woke I was asking for a roast dinner followed by chocolate pudding and custard. Those who know me will recognisee the relevance of this meal. As to be expected I was a little confused for a while.
The operation did not go as expected (damn my eternal optimism!). There were complications, I am the 1 in 10 mentioned earlier. I will provide more details in a later blog, but the robotic keyhole approach had to be abandoned in favour of a larger hole, and I have a stoma. Apparently many people name their stomas. Naming things is not really my thing, a little council-ish to my way of thinking, but I do wonder whether ‘Sexy Beast’ might be an appropriate appellation under the circumstances?
I was in recovery for a couple of hours, where I had a drink of water. I am still only.allowed water. I have not eaten for 55 hours.
My woumd has.bledna liyyle, which mwqmr³³³
Try again, as Spike Milligan has on his gravestonrle, ‘I told you I was ill’. My wound started bleeding, which meant the dressings, my gown and the bedsheets had to be changed – a bloody mess. I have had several changes of substances enterimg my body, been swabbed and creamed, injected into my abdomen, and various other things all evening.
I have chatted with one chap about aeroplanes crashing in the Dark Peak, particularly the B29 supèrfortress on Bleaklow. My neighbour across the way reminds me of the hospital scene in All Quiet on the Western Front – the book or the first film, certainly not the recent one with the same name and different storyline. He has the expertise of one who has been in this in Chad, works for a firm that does a lot of work for Rolls Royce, is 42 years old with a wife and 2 young children. He is happy in his line of work and doesn’t know anything about me. How is a chap meant to read his book?
Just gone midnight. The alarms started going off, waking me up from a deep sleep. It appears my breathing rate went down to 0 bpm, so they have had to connected me to oxygen with the little pipes up my nose (which means I can’t pick my nose). Shortly afterwards my blood pressure shot up to 350/250. Again, quickly sorted out. I am glad I am not on the ordinary ward. That was 15 minutes ago, so now I am monitor watching. It still keeps beeping. I am not sure my catheter is still in the right place. I sort of want a wazz but it doesn’t get worse.
I keep falling asleep while writing this.
Cancer 15
Posted on March 7, 2023 4 Comments
I received a message today saying that it is 99% certain that my operation has been brought forward to this Thursday! Good but terrifying news. I am very glad that it is going to take place sooner. I won’t describe how my bowels have been feeling recently but I know I need this operation quickly. Terrifying news because underneath it all cowardice lurks. Can I run away? Can I stick my head in the sand and pretend everything is all right? Don’t be ridiculous. Crack on with it. People have these operations every day – except these people are not me. In reality I only experience these negative moments for brief periods.
As the date for the operation approaches, I find myself closing down or focusing in on myself to some extent, excluding the outside world. It is a strange feeling, something that I know people who are dying do; but I am not dying, or maybe I am. Perhaps it is my body that is shutting down because it is aware that without treatment I will die within months at the most, from a blocked bowel that I imagine would be a rather unpleasant way to die.
I tend to be fairly well in tune with my body. I don’t eat crisps except when I am in a hot climate. When we had the house in Spain I would eat crisps regularly during the summer. I always put this down to my body craving salt, because, as a sweaty person I am sweating out so much salt.
Whether or not my body is starting to shut down because it thinks it is dying or not I don’t know, but I do think that as the operation is nearly upon me I am thinking and feeling more about it and less about what is happening in the rest of the world. I am reading the papers less than I was a month or two ago. I am forgetting important events (see previous blog and afternoon tea). I have less interest in the world generally. It is almost as if I am on the grid for the grand prix, tuning up my engine in readiness for the big race, focusing on what is becoming important.
This analogy is pertinent. I carried out a study a few years ago, interviewing both veterans who were taking up racing as a way of dealing with the stress of their memories, and top racing drivers (including one Formula One world champion, other formula one racers and an Indianapolis 500 chap – no names!). I was not asking them about their general experiences of racing, but of how they thought and felt at different stages. One veteran with PTSD described how at first if someone passed him on the track he would get angry, rush to overtake, and invariably crash. He then learned to control his emotions, cognitively plot a strategy to overtake and use that. It increased the number of times he overtook, reduced his crash rate, and also helped him control his emotions off the track. Instead of getting angry with other people all the time he learned to control his emotions generally. A much better idea than therapy.
Another key finding was how the drivers, both groups, prepared themselves for the race. They controlled their emotions, thought carefully about strategies, and by the time the race started they were mentally attuned to the race and how to maximised their chances of doing well. Emotional responses were saved for when the race was finished.
Perhaps this is what is happening to me, a growing focus on the treatment, preparation for the operation and what comes afterwards, and preparing myself so I can best deal with what is to come, including the unpredictable, those things that can go wrong that I may have to deal with afterwards (or not, if I am dead). When something significant is happening to us we focus our energies on what is important, channelling what we have in order to do the best we can to get through what is happening.
People who have near death experiences talk about a light at the end of a tunnel, but I think this is just the imagination. The tunnel exists, in terms of the focus, so what is the light? It is imagination, going through something horrid we want to come out the other side feeling better. For me this is my cancer. For others, the light may represent heaven, ie the imagination telling us that don’t worry; if you die then you will go to heaven. I am still waiting for the light!
Finally, I should mention that I have chosen the book I want to read while I am in hospital. It is an obvious choice really, a book I read years ago, and which I consider to be the best Solzhenitsyn, at least the best I have read. His 1914 took longer to get started than the First World War itself – though it wasn’t long between the killing of the Archduke in Sarajevo to the German invasion of Belgium. The Gulag Archipeligo is a fascinating book but could be edited a little. A Day in the Life of Ivan Denisovich is brilliant, but not really long enough to be called a Russian novel. Have you realised what it is yet? I am going to read Cancer Ward. I really enjoyed reading it years ago, and now it is a little more pertinent. The everyday story of patients and staff on a cancer ward in the Soviet Union. What could be a better read in the circumstances?
Tomorrow I am on liquids, clear liquids so I can’t even put milk in tea. I have to take the medicines to clear my bowel (details not necessary) and high carb drinks to prepare my body for the chop. I then have to be in the ward with all my books by 0700 on Thursday.
There may be a longer gap than usual before the next instalment of this blog.
Cancer 12
Posted on March 2, 2023 Leave a Comment
I am in hospital again today, this time for an echocardiogram. I think the anaesthetist is a little worried about my heart. There are two key aspects to consider beyond heart rate and blood pressure, both of which are controlled by drugs (OK, my blood pressure is a little high, bt not ridiculously so). The other two aspects of importance are my ejection fraction and my arrhythmia.
My arrhythmia is under control. Since I had a cardioversion in September 2020 I have not had a problem. The cardioversion is a wonderful tool. Basically it involves stopping the arrhythmic heart and starting it up again, hoping that it will be in rhythm. There is no real difference between this and turning a computer off and on again to make it work; and just like with the computer, it usually works. It was invented by scientists in the USSR and involves sending several thousand volts through the system – bu tI have described it in an earlier post. The danger is that the operation may make my heart go out of rhythm again, so I may need another cardioversion.
The other problem, the ejection fraction, relates to the rate at which the heart pumps blood through the heart. More precisely, the ejection fraction (EF) formula equals the amount of blood pumped out of the ventricle with each contraction (stroke volume, SV) divided by the end-diastolic volume (EDV), the total amount of blood in the ventricle. To express this as a percentage it is multiplied by 100, ie: EF=(SD/EDV)100. The normal ejection fraction in males is from the mid-50s to 70s%.
My ejection fraction when I first got heart failure was less than 30%, or ‘severely abnormal’. At the last measurement in 2021, it had increased to nearly normal, just over 50%. This is what is being measured today. As I have been taking the drugs, not drinking and generally had a reasonable diet, I am hopeful that it will be reasonably normal. I should know later on.
Later on.
Nothing really to report, except that the echocardiogram went smoothly. The person who administered it did not have the analyses so could only report that from the pictures the heart looked like it was functioning reasonably well. Hardly decisive, but indicative of a positive result.
While I passed my 60th birthday only three days ago I am fairly confident that despite my dodgy heart I am fitter than many people who go through this kind of surgery. I can (probably) still beat most people at arm wrestling if anyone wants a go; though I cannot do my old party trick of bending and breaking a six inch nail with my bare hands. To be honest, I haven’t tried it for decades. Perhaps I should.
Dr Nigel Hunt 