Cancer 109
Posted on March 5, 2024 Leave a Comment
Another day another treatment. After a week’s delay due to pneumonia, I am back in the treatment room. I am bored, so I am going to make you bored. There is nothing exciting happening. I can’t be bothered to read or write – including writing this. My stoma is making rude noises, as my mother used to say, and obviously, I have no control over it. People are very polite. I did have conversations with certain nurses, one of whom is leaving us to go to haematology. That is not acceptable. The other is busy writing, which is acceptable.
There are no exciting patients today unless it is me not being exciting. IT could be. I did plan to do a writing exercise, writing a paragraph or so describing the various people in the room, but it is not worth it today. For instance, Harold just sits there looking at the nurses and doing very little. He looks like a farmer. Gary just sits there. He is in his late 60s, with receding hair and glasses. Gary and Harold occasionally speak to each other. I have just found out that Gary is a beef farmer. I got the wrong one. Harold just smiles, wondering what to say, so he brings up having an allotment and the weather. I still think Harold looks more like a farmer. Gary looks like an ageing Auden until he speaks.
Faith has not spoken since getting here. She has her head covered due to alopecia. Edward is an Indian, and again very quiet. Neither Faith nor Edwards are doing anything other than staring into space. No phones, no puzzles, nothing. Diana has family with her. I don’t hear them speak very often, and certainly not about anything of interest. Gary and Harold are trying to talk beyond the weather but it doesn’t seem to work. Cathy wears a turban and stares into space. I am not sure whether she has even spoken to the nurses. Barbara is rather frail and seems to know a couple of people, interacting with them to some extent, but again spending most of the time just sitting and staring.
That just leaves me, I will call myself Andrew (now you should understand the code). Apart from a few conversations with nurses, I have been reading my Starmer biography, looking at the news, and eating food. It is not an exciting day. Sorry Keir.
I hope this has bored you as much reading it as I have been bored writing it. I have another 2-3 hours here before I can go home and feel queasy all evening.
Cancer 108
Posted on March 2, 2024 2 Comments
My chemotherapy treatment was delayed for a week because I had pneumonia. Fortunately, I am better now (if that is the right word) so my treatment will go ahead next week. My bloods are as normal as they can be, my blood pressure is a little high, and my temperature is high normal. I am the picture of health. Tomorrow I am having an Afternoon Tea in Grasmere, which will help my weight issue, well, it will hinder it, but help and hinder are just two sides of the same coin and sometimes you just have to spin it.
I suddenly have several books to read on quantum theory and theoretical physics. I am enjoying them, but thinking that to really understand what is going on I need a better understanding of mathematics, particularly of calculus. This idea that I need to study new subjects to reduce the effects of chemobrain and find new ways of enjoying life could be taking a dangerous turn. While I am reasonably good with fairly complicated statistics and I have an O level in Maths (which was one of my two O levels from school, the other being English Language, the story of the failure of the Comprehensive system may be for another day), advanced calculus may be a little beyond me.
Perhaps as an alternative to Calculus, the topic of Lord Byron came up today, I don’t remember why (chemobrain). I always hated the romantic poets. They put me off poetry for life. I appreciate the war poets (Owen, Sassoon, Baldrick), a bit of Auden, and Betjeman, but mostly when I see poetry I tend to ignore it. If I do read it I generally get bored and move on to better things in life. I don’t know why I can;t connect with most poetry. I love the English language, reading widely, and writing. I have published, roughly, more than a million words in articles and books, and perhaps 50,000 words in this blog (that is a guess. Feel free to add them up and let me know the truth), so I must like the language at some level. I’ll just blame the romantic poets….
I have never been to Byron’s home, Newstead Abbey, partly because my car has always found it difficult to head in the direction of Nottinghamshire, but I must rectify that. I should see Byron’s grave in Hucknall. He is buried near his daughter Ada Lovelace. I must try and read his poetry. I ought to read a biography and find out more about his experiences helping Greece against the Ottoman Empire. I think he was with the gang that tried to think of a good story, which Mary Shelley won with Frankenstein, a good prose story. There is suggestions of mental illness, a daughter (not Ada) born as a result of his liaison with his half-sister, and so on. If anyone can suggest a good biography please do so. It has to be more fun than calculus.
Cancer 107
Posted on February 23, 2024 Leave a Comment
Many people who die of cancer have certain patterns in their decline. They tend to become less interested in the world, they interact with fewer people, their world gets smaller until the focus is largely on the self. This is something that does concern me, not the process, I can understand how people lose interest in the world around them as they are dying. I get it. The concern for me is that, as I watch for the signs in myself, I will declare to the diminishing world that I am in decline and that I will die soon, when actually what is happening is that I am having a bad day. There is the danger of crying wolf, that I declare I am in terminal decline so many times that people cease to listen or take it seriously, so that when I do have he real decline nobody is interested any more. Of course, if this is the case then presumably I won’t care whether anyone is interested because I will be unconcerned with the state of the world.
I do try to put off this decline. Now I am retired I can develop new interests. I always think that had I read the right books at the right time, ie in the weeks before I walked off the building site declaring that I wanted to get a PhD, I would have been a physicist rather than a psychologist. As it was, I had been reading psychology books so I went and got a PhD in psychology. There have always been psychologists who wanted to be physicists. I assume it wasn’t just because they were bad at spelling that they ended up doing psychology, perhaps they just weren’t bright enough, or were too bright. I don’t know.
Anyway, partly as a way to show myself I am not in intellectual decline I have started reading physics books, particularly books relating to quantum physics. This is not because I think I am clever, it is just that I have always had an interest in the subject. I know very little maths, so I am not going to understand a lot of it, but then most theoretical physicists claim they don’t understand quantum theory. Perhaps physics and psychology are not so different. Both are about relationships rather than things, both are trying to find explanations of complex phenomena that are in many ways unpredictable, both are employing methods that are perhaps not the best methods to apply, and both come up with some daft ideas about the way the world is structured. The black box of cognitive psychology is the black hole of quantum physics, we make predictions that often come true but we don’t know why.
In terms of decline, I have not been feeling too well in the last few days. I have a ridiculous and very itchy rash around my PICC line entry. I appear to be allergic to all the dressings. I have been having abdominal pains for some time. As I have mentioned recently my stoma and associated hernia have been troublesome, and today I was called into the hospital where I underwent my third Covid test – I really do not like things stuck up my nose. I can bear anything except that. Please give me another serious operation, chop out my liver, play bagpipes with my heart, use my fingers as piano keys, my eyes as pin cushions, give me terminal cancer, but don’t stick anything up my nose. Anyway, it was negative, but unfortunately, I have pneumonia, hopefully not too serious as I have been given only five days of drugs, but it does mean next week’s treatment has been postponed for a week. I am cancelling the next week. I am going nowhere and seeing no one. I need to get better quickly so my treatment can resume.
I am not claiming my current troubles as terminal decline, just a set of irritating pains, aches and illnesses. I fully intend to be functional within days. In any case, it is my birthday on Tuesday. I need a wild celebration. Perhaps I will eat a little chicken, drink some ginger beer, and hope I get another book on quantum physics for a present.
Cancer 106
Posted on February 19, 2024 Leave a Comment
Life’s shit, part two. It was a bad day for my stoma yesterday. I had three serious leaks, more than ever before. A leak is embarrassing. Imagine walking around in public and suddenly, without warning, faeces emerge over your stomach, leaking from a bag, and oozing around the sides of your support belt. I don’t have to imagine it. It gets on my shirt, on my trousers, on my support belt. I need to wear the belt so I have to wash it off and put it back on wet. I have to hope my clothes are not too bad as I am often not in a position to get changed. Fortunately, two leaks took place at the house last night so I could get changed.
The stoma is in a bit of a mess. It is bleeding quite badly. This is fairly normal. The blood comes and goes. It is just that yesterday everything seemed to come at once, and it was diarrhoea. That is at least partly a function of the time point after last week’s chemotherapy, so I took painkillers and anti-diarrhoea tablets.
The whole thing is rather unpleasant.
It came to a bit of a crisis last night. I am stuck with the problem of having to wear a belt to try and keep my hernia under control but the belt itself squashes the stoma bag which means it is far more likely to leak. Last night I started to think I shouldn’t be out in public, that I can’t cope with it all anymore. It took me longer than usual to settle and get my head around everything. When I did get to sleep I had a dream all about the complexity of changing my stoma, changing my belt, and trying to stop the leakages. It was one of those disturbing dreams that stays with you when you wake, and then you realise the dream is just reflecting real life.
I have an additional problem with the stoma. Being colourblind I can’t tell the difference between the colour of the stoma itself (the gut), the faeces, and the blood. It means that when the stoma is open I have to look carefully to see what is emerging. Most people can probably tell the difference between these various browns and reds and it must make life much easier.
And there we have joys of being a cripple, especially one with all this intersectionality between heart failure, cancer, stoma, hernia, gout, colourblindness, lefthandedness, an itchy PICC line, a touch of neuroticism and being a white heterosexual male. I’ll get over it.
Cancer 105
Posted on February 18, 2024 Leave a Comment
Trigger warning – may contain elements incompatible with breakfast, but I have said before that I wish to be honest with this blog. This is a good example.
Instead of cancer, I am going to talk about my stoma. It plays a big part in my life now. I have described it previously, so this is an update on my experience for new readers and those who like this kind of thing. I have a permanent stoma due to having lost 25-30cm of the descending colon which had a large cancerous growth. Instead of faeces packing into said colon and being eliminated in the normal manner, I now have a hole on the left front side of my abdomen. The hole looks like the end of a wet and empty sausage skin which has been sewn onto my skin. The hole is usually crinkled closed. It is big enough to stick a finger in if you are so inclined (imagine sexual perversions if you will, I prefer not to), and peristalsis is visible once it gets going, sometimes warning me that it is going into action, often not.
I had no knowledge of stomas before I woke up in a hospital bed with a bag attached. Before my operation, I was told the risk of having a stoma was under 10%. A low risk, but some of us have to be in that 10%. With help from stoma nurses, who taught me the procedures, I quickly got used to it. They were great, When there isn’t much choice you can get used to most things (this should apply in so many ways in society but that is another subject). It has been generally fine. The system works very well considering the difficulties, though there are leaks, sometimes in quite embarrassing places. I have a card that indicates a need for emergency toilet facilities but I have never used it.
The colon usually kicks in two or three times a day, one of which is usually in the middle of the night, after which I usually need to change the bag. This is peristalsis, contractions that force the faeces along the colon, where normal people have a sphincter that enables control of when the faeces is ejected from the body. As my anus is now detached from my colon I have no such control and faeces emerges when it damn well wants to, either into the bag or – usually at night when I have removed the bag to let air against my skin where the bag usually attaches – straight into the open, where I deftly catch it with tissues and put it into a plastic bag similar, but slightly bigger, than the ones used by dog walkers.
At home I have a bin I put the bags in before they are then put into the general waste bin and taken away by unsuspecting binmen. If I am in a disabled toilet there is usually an appropriate waste bin. If I am in a normal public toilet – perhaps in a pub or cafe – then there is usually no appropriate bin so it goes in the bin for normal handwashing tissues. If there is no bin in such a place I usually leave it in the toilet because it cannot be flushed and While I will inform someone I am not carrying a shit-filled bag out of a toilet into the public area of a pub or cafe. There are limits. I sometimes have to change it in the car, perhaps in full view of passersby. It isn’t always good for one’s self-esteem.
The system generally works well. The bags are well made. When I fart – yes, I have no control over that. It can happen in embarrassing places – they have a filter so there is no smell. It is one advantage I have over those without a stoma, no smelly farts. The bags stick effectively to the skin around the stoma, and stay stuck as the bag fills. The capacity of the bag is nearly always sufficient for a good defaecation, though it can hang heavy when full. At first, I was a little embarrassed in public with a full bag sticking out of my well-rounded abdomen, but I tend to wear shirts loose (yes, I can get them that big) and care less than I did. I am always touching it to see how full it is because I cannot always tell whether it has been working or not. I lack sensitivity around the stoma. Once it is full I change the bag.
In a disabled toilet I stand over the baby changing shelf, in a normal toilet I sit on the toilet, in the car I sit in the driving seat, at home I sit on a settee. I set out my kit, new bag, anti-adhesive spray, wet wipes, dry wipes and plastic bag. It is important to have it all ready, when the bag is removed there tends to be a shit-stained area around the stoma, and sometimes, particularly if the bag is very full, the faeces will continue to emerge as the bag is removed. It takes skill to get the tissues in place so it doesn’t create a mess. I haven’t had many major accidents during this process. On nearly all occasions I avoid getting any shit on my hands at all. Impressive eh? Once I have cleaned up I attach the new bag, seal up the mess in the old bag and dispose of it as indicated.
To return to the night. I am usually awake for several hours at night, and for perhaps a couple of hours I leave the stoma open to the air. It may be old-fashioned but I like the area to breathe. The consequence of this is that I have to keep my kit out the whole time. I have a full dry tissue on my right leg, and half dry tissues on my left (half tissues being sufficient for most purposes and I like to do my bit for the environment). The wet wipes are also ready. Top tip, never have an open stoma and no ready tissues.
Faeces usually emerges a few times while I have the stoma open, though sometimes nothing emerges. It is an interesting process, a little like a volcanic eruption. For the latter, there are some warnings that an eruption is going to take place, a little shaking, some rumbling, and then the spew of lava. For the stoma, I often detect movement, not through neuron function, but by noticing movement while I sit there reading my book. It farts. The stoma opening contracts both in and out. Sometimes there is no action, sometimes I have several seconds before action, and sometimes it emerges immediately. In terms of size, the immediate action is often a big usually soggy lump of faeces that keeps coming and needs more than the standard half tissue, which is why the full tissue is available. I gather it carefully as it comes out, wiping the bottom clear and put the now heavy tissue in the plastic bag. I then use a wet wipe to clean up, prepare more dry tissues, and wait for the next emergence. Often, the amount of faeces is small, and it will often just stick up out of my abdomen until I gather it which I do more or less immediately.
I keep the area clean. The wipes work well. Eventually, when I am bored, when I think there is nothing new to emerge (that is guesswork), or sometimes when I want to go back to bed, I stick on the new bag, dispose of the full bag, and carry on. Don’t tell anyone but I have been known to weigh a particularly heavy bag. I had one that was over 500g. I was very proud of that. Heavy ones are usually over 300g. I do not keep a record so don’t ask.
There is variation in faeces partly relating to what I eat and partly due to chemotherapy. During the three days of the latter every fortnight, I tend to initially have constipation for a day or two and then diarrhoea for a day or two. It was a bit disconcerting at first, having a period when nothing comes out. Then it comes out quite solid, and then very loose. For the latter, it pays to be deft with the handling of tissues for emergent material. Again, I am well-skilled. There should be a Stoma Olympics. I would win it hands full.
The final problem I have is that I have a hernia the size of a pineapple around my stoma. This is fairly common but it means I now usually wear a belt in case I fall apart. I have spoken of this before. The problem is that while the belt compresses the hernia so I don’t fall apart like a cartoon character it also compresses the bag. Peristalsis is a strong function. If it is going to force faeces out then that is what is going to happen, despite the bag being compressed against my abdomen. If it can’t get in the bag it goes sideways, breaking the adhesion, leading to a leak. Sometimes the leak is large and smelly. I have to get somewhere to change immediately. It has happened in a cafe, happened in a shop, it happens anywhere. It is a mess, with shit leaking out the side or the top, getting on the belt, perhaps getting on my clothes. It is the most unpleasant aspect of the stoma experience. I can’t wait. I quickly find somewhere to change. I carry the changing materials in my trouser pocket. Fortunately, I have not yet forgotten to carry them. It will happen at some point.
I do find the leaks embarrassing. I don’t hang around waiting for people to say anything. Sometimes they must notice. I will leave the extent of a bad leak to your imagination. No, of course I won’t. What happens is that the faeces leak out from one side, both sides or all around, get on the belt if I am wearing it or my shirt if not, and sometimes both. I can do nothing until I am in a position to do the full change as I need my wipes and the waste bag ready. When I am ready I wipe the worst away from the leak, remove the bag as usual and clear up the rest of the mess. It can take quite a few wipes. If I have to use my pocket emergency kit then it is just wet wipes, which get the job done quickly. If I am in a toilet I will rinse my belt and my shirt. If I am in the car I just wipe it off as best I can and then find somewhere to change.
I always have to remember to carry my stoma equipment. I wear trousers with a side pocket I keep the emergency kit in (usually 2-3 bags and ancilleries). I sometimes have a shoulder bag with further supplies (perhaps 5-6 bags). In the car, I have a toilet bag (10-12 bags), and at home, I have another toilet bag (10-12 bags). I have several drawers full of spare bags, etc. When supplies start to run low there are companies that resupply me. Some elements (bags, adhesive) are on prescription so I have to contact the company, they contact the GP, the GP issues the prescription, then I am sent a boxful of bits and pieces. It was more of a logistic issue when we went away to France for a month. I had to make sure I had enough kit as it is not something you can buy in a supermarket, even a French one. Using advice I ordered at least twice as many bags (plus ancillary kit) to make sure I had enough. I packed most things into a big bag and put the bags into a huge plastic bag as there wasn’t enough room. I also have to carry a lot of drugs both for my heart and for my cancer. The latter includes sickness, diarrhoea, and painkillers. For my heart, I have four separate drugs, and I mustn’t forget my gout treatment. Gout seemed so serious a few years ago, now it is a minor affliction. Anyway, I didn’t run out of anything.
I am fortunate that I don’t have a problem with shit. In the distant days of bricklaying, I worked in open sewers, down manholes, in toilets, so I was used to other people’s mess as well as my own. I imagine it is difficult for some people. I hope this has provided some illumination of the joys of stoma-hood, and if you are unlucky enough to get a stoma in the future then you will have more understanding than I did. I have now lived with it for nearly a year and as I said, I am used to it most of the time. It is only when it leaks in public that I can get embarrassed, or when it lets out a good strong fart (it often makes the same noise as you do) in a public place.
There are no advantages to having a stoma. It is not something anyone wants. I don’t want it, but the alternative is much worse. It should keep me going for the rest of the time I have. The bit I am not looking forward to is being so ill that I can’t change it myself. And there we have the cycle. A baby has to have its nappy changed. Then we learn to use the toilet, and at the end, some of us revert to having our nappy changed.
Dr Nigel Hunt 