Cancer 104
Posted on February 17, 2024 Leave a Comment
A very popular way of dealing with human problems is the support group, usually now the online support group. Before I retired I was slightly involved with these support groups, usually in relation to students’ small-scale research projects. I sometimes wondered about their value but never really thought it through. They are presumably very helpful for some people, in terms of practical advice, sympathy, and support.
Since my cancer diagnosis I have, several times, thought that I should somehow be involved with the various online support groups that are available for people with cancer and those who help them. I have tried registering. I have looked, but I don’t feel able to benefit from them.
I have looked at people’s comments and sometimes felt able to respond with advice, but I have not put a question to a support group that I want answered. I am not sure why. I don’t claim to have any great knowledge about cancer. I am not a medic, I am not a biologist, I am confused by some of the terminology though I do read some academic papers and health web pages about the disease. I understand the scientific method and can interpret findings. It makes sense to ask questions about things about which I have limited understanding, but I don’t ask questions on online support pages. It is not snobbery, a feeling of superiority or a better knowledge base, so what is it?
If I want to understand something of cancer I might ask a professional when I am in the hospital and as I said, read the academic articles and the recognised web pages. There are probably people in these groups who are knowledgeable, but how am I to know which ones? How am I to know which people I should take advice from?
The groups are probably more useful for asking for and providing social support for people with cancer, at least some people with cancer. I don’t feel I need it. I have a great support network with family and friends, most of whom spend most of the time taking the piss, but enough of the time being kind, generous and understanding, helping me when I need it, and being serious when I need it. I am lucky. I am not lonely or alone.
I am sure the support groups are very good for other people who perhaps don’t have this support, or are surrounded by people who don’t understand or can’t for whatever reason provide the support an individual needs, which brings up another question, that of the difficulty of providing support, which works both ways.
We often talk of how people find it difficult to talk to those who are seriously ill. They worry about saying the right thing, doing the right thing, being around, staying away, and so on. I suspect most people with cancer would prefer it if people just said whatever they wanted to say, turned up on the doorstep for a cup of tea when they felt like it, and commented on the person’s treatment, look, health, or illness, in whatever way they thought. If they get it wrong they will find out, but speaking as someone with cancer I would prefer somebody to just turn up and say ‘You look rough’ rather than not turn up. It is better when they say ‘You are looking well’, as long as they mean it. Don’t bullshit. If you find it too difficult to say something, don’t say it, but still turn up for that cup of tea.
On the other hand, it is also important for the person with cancer to say what they want, not to withdraw into a shell and wait to die. I know this is difficult, that we are all different, and that it is seemingly impossible for some people to open up because the diagnosis can be so devastating that they cannot cope. This is perhaps one of how online support groups can help some people, those who are happier online than with people (at least concerning their cancer).
It works two ways. The person with cancer wants people around them, but they have to show they want people around them. The supporter has to show that they can support, in whatever way is most appropriate for their relationship with the person with cancer. That might be talking, either about cancer or not, going for a walk, or just having that cup of tea.
Who am I to say what kind of support works for people. Social support is about perceived social support. Whatever works for the person works, whether that is lots of friends, a key friend, or the online community. My point here is just my opinion. For me online support groups have little meaning. For others, I am sure they are a valuable form of support.
Regular readers are well aware that this blog is my form of online support. Spit it out, feel better, and get on with life.
Cancer 103
Posted on February 16, 2024 Leave a Comment
Something I have very occasionally done when I am troubled is visit Heage, where I was born. I walk around my childhood haunts, see the windmill, walk past the house I was born in, and visit the churchyard, where I know an increasing number of the people buried there. Some of them are people from the village, some the parents of school friends (and by school friend I mean person I went to school with, not necessarily a friend, but you do get to know those you were school with for 6 or 11 years), and a few are friends and acquaintances (quite a few contemporaries have died during my lifetime, most are not in this churchyard).
Sometimes I look at a gravestone and wonder if the person is the parent of a school friend. They have the same surname but we never knew their first names, it was always Mr or Mrs such and such. There are graves with one person’s name, with the space for the spouse. I sometimes wonder what that spouse is thinking, as though the grave is waiting for them to die.
I went for one of my walks yesterday. I had planned a ‘long’ one, walking around the village, a few muddy fields, but mainly not muddy roads. It didn’t work. My walking limitations came to the forefront and I didn’t even make it to the house. I ended up doing a short circular walk through some of the muddy fields and round to the churchyard. The walk did take me past the remains of a pond where we used to collect frogspawn and newts. By the pond was a well. One day an acquaintance (you know, the type you sometimes play with but not often) fell into the well. This acquaintance could be a bit of a bully, so it was funny to see him treading water in the well panic-stricken and crying before we pulled him out. A bully who loses credibility is no longer a bully. His parents are in the churchyard.
The churchyard has not changed much in my time. It still has the same bent metal gates, rouch tarmacked paths, and many falling or damaged stones going back through the centuries. There are many familiar surnames, both on the ordinary graves and the war memorial, as so many families have probably never moved from the village. There are a few pretentious gravestones, presumably designed so the person can have an important place in their imaginary heaven. Sometimes I wish there was a heaven so the monied people who think class distinction will still be important will be disappointed. Not much of a reason for wanting heaven I know, but it would be good to see the look on their faces when they have to live on a council estate with everyone else. Perhaps I have a cock-eyed view of what heaven would be like, a good reason in itself not to believe in fairytales.
I walked to the graveyard extension, the area which has been gradually growing over my lifetime and looked at the newer graves. As usual, the familiar mixed with the unfamiliar. I sat on a bench dedicated to one 20 year old who was killed late at night in a car accident. I had been talking with him that same night in the pub. It was unusual to see him out drinking. It was his last time. He was 20 when he died. The bench was also dedicated to another person who died in an accident when on holiday with other friends. He was 19 when he died.
Among the people buried in the churchyard is my best friend who died in another car accident when he was 30.
It is somehow selfishly comforting when I recollect the number of friends and acquaintances who died young, knowing that while I probably won’t get properly old (note the optimism there), at least I have lived long enough to have a long marriage, a child and a career, along with friends, the chance to travel a little, and so on. Many of them had none of that.
Sitting in the churchyard was comforting. My thoughts were about the people buried, and how I will soon be joining them – not that I intend to be buried in the churchyard. I have no notions of an afterlife so I think the comforting element was that in the end, we all join the ranks of the dead. It is nothing unusual, there is no avoiding it, every single one of you reading this will die, hopefully at an appropriate time rather than early, but many of us do die early for one reason or another. It makes no difference to the universe. Our atoms were created in the stars, and they return to the ground for recycling. That’s it. Life is a temporary blip in the cosmos.
Graveyard therapy works for me. A few minutes of these thoughts and then a return to normality. I had done the walk while undergoing chemo, with my pump under my arm. I returned home, the pump was removed a little later, and we went for a very nice Turkish meal.
Cancer 102
Posted on February 13, 2024 Leave a Comment
Having cancer in the way I have cancer is a little like being sentenced to death and sitting in a cell on death row. Every two weeks I await the result of my blood tests to see if I am healthy enough to undergo my next round of chemo. If I am not healthy enough, then that may be the call to the death cell, at which point I hang around while the tumours grow until it all becomes too much and Bob’s your uncle. At one level, this is incredibly stressful. Have I got another reprieve? Fortnight after fortnight, relentlessly, permanently, for the rest of my life.
The thing is, if it really did cause me high levels of stress I would probably have hanged myself by now (any other method of suicide is equally acceptable), but humans are incredibly resilient. Just like other unavoidable stressors, we put up with because we have to put up with it. It is the only way to manage.
There are other, more difficult stressors. For me that is my stoma and my hernia, which can at times make things difficult, and I can find them very upsetting. It is these that make me emotional, and sometimes make me think death might be better than life – but not for long.
Last Friday, my blood tests indicated reasonable normality across most measurements. My liver is working, my kidneys are working, my white blood cell count, if a little elevated, is reasonably normal, even my cancer markers are not too high. The chemotherapy is working, but at some point it will fail. It always does, but it is not possible to know when it will fail. Next week? Another year?
All I can do is live. Then I will die. Just like every human dies. The key differences include knowing that you are under a death sentence, and variation in the amount of time a person lives.
I don’t expect to get to 80, or 70, or 65, but you never know.
Cancer 101
Posted on February 9, 2024 Leave a Comment
According to Orwell, room 101 is the worst thing in the world. I am not sure what the worst thing in the world is for me. I can think of quite a few objects or situations I don’t like, but the worst? It depends on timing. Whatever is bad at the moment is the worst thing in the world. What is gone is gone, so there is no point in worrying about it. What is coming in the future is in the future. For all of us the end is death, so there is little point in worrying too much about that. The focus, then, should be on the present.
Apart from my cancer, my chemotherapy treatment, my stoma, my hernia, my PICC line that has to be changed on Monday, and my side effects, the worst thing in the world at the moment for me is the way I have been treated over my retirement. Initially, it was the University of Nottingham, which as I have previously said, significantly delayed the process of retirement through incompetence and laziness. They have apparently reviewed the case and apart from a few errors they are wonderful. That’s good to know then.
My pension provider, the USS, was, I initially thought, not to blame for slowness in sorting out my pension. I thought they had just not had long enough due to the University’s incompetence, but no, after various communications this week it turns out they claimed not to have the documentation until a week or so ago, and they had ‘not seen’ communications with me indicating how I wanted my pension paid. It turns out they had all this information, so they asked me to confirm what I wanted via email and to fill in another form that they thought I had not completed, though I completed it a long time ago. They had permanently misplaced it.
I have still not received my pension, nor have I received notification of what it will be and when I will receive it. Nor is there an offer of an interim payment. The latest is an email received a few minutes ago saying that I should have received a letter this week with this information. That was the University again. I have not received the letter, and it is Friday afternoon.
Incompetence throughout. A refusal to accept responsibility. A refusal to act promptly to resolve the matter despite both the University and the USS being fully aware of my health situation. The other day I was more angry than I have been for a long time. Fortunately, I resisted any response. Is anyone aware of a link between illness and stress? Apparently, the University of Nottingham and the USS are not.
Funnily enough, no one is offering to pay the interest I am missing by not receiving my money on time. What a delightful failure of responsibility. I assume they think I am too ill to keep fighting. Perhaps I am.
On a more positive matter, my bloods are normal, apart from a slightly raised white blood cell count, so I can go ahead with treatment on Tuesday, but only after my PICC line is replaced on Monday because the NHS received a bad batch. Some of the lines are failing. Parking is going to be more difficult. The University has failed to respond to my request to keep my card active for a little while longer so I will have to park in the normal car parks at the hospital. Those of you familiar with Derby hospital will be aware of the lack of adequate parking, so despite my appointments not being until 1100 on both Monday and Tuesday, I will have to arrive around 0700 to make sure I get a parking space. Don’t suggest public transport. It is not feasible from here.
There is nothing to do in this hospital when waiting. There is a Costa, which stinks of coffee, a smell so vile, etc. There is the ‘restaurant’, which sells poor quality breakfast and has a Subway, which sells the most disgusting smelling food in the land. There is another cafe, which is mediocre. I could go for a walk but the hospital and surrounding area are ghastly, you walk out of the main entrance to the smokers, and then pass on to the cars and roads. It is undelightful. I can’t even go to the University library now, as I don’t have a card. Most of these places don’t open until at least 0800 so I am left with the corridors, watching ill people walk around.
We watched Oppenheimer the other night. It had the potential to be a great film, but the (usual US) failure to recognise that without the British research before the Manhattan Project, the atom bomb would not be ready for Hiroshima in August 1945 spoiled it for me. Perhaps Barbie will be better.
Cancer 100
Posted on February 3, 2024 Leave a Comment
As this is my 100th blog on my cancer I feel it ought to be somehow special, but it isn’t, apart from being longer than average, sorry. While I am not sure what aspects of cancer could be special in a positive sense I don’t know. To coincide with the 100th cancer blog there are significant points around now:
- It is just over a year since I was diagnosed. That is good because I have survived a year with cancer. It is not so good because (though the reliability of the figures is poor) I was given two to two and a half years, so I am halfway through my cancer life. This corresponds well with my heart failure prediction, which also predicts death next January. Keep your diaries clear folks. Of course, apart from the unreliability of the figures, there is the argument about who wants to be average so it might not be January, in which case my apologies.
- I retired from full-time work on Wednesday, but neither the University nor the pension providers have got their act together so I have still received no money and no final confirmation of what the money will be. This is unacceptable given the circumstances in which I had to retire. ‘Hi, I am dying of cancer, can you get this sorted out pretty quickly so I get some benefits?’ ‘No, we won’t bother. Can’t be arsed.’ That was basically the response from the University, as regular readers know.
- It is my birthday this month. If you want the address for the huge presents please let me know. If it is cash (which I will have to live on with no pension) then I can send you my bank details. I thought not.
The anniversary and retirement have left me feeling somewhat vulnerable. That hard shell I try to have has its weak points. It is a little like the lining of my abdomen, pierced by the slings and arrows of outrageous misfortune. The biggest problem I have at the moment (apart from my little pet cancer cells lining said abdomen walls) is that I have a hernia around my stoma. It is getting a little big and the options are wearing a truss, which I am doing. It is not cool unless I treat it as a cummerbund, but no change there for me. Alternatively, there are two operations available. One to move the stoma and block up the current hole, the other to put mesh around the current hole and tighten it up a bit. The problem is that it is unlikely any surgeon will operate on me while I am undergoing chemotherapy. It is a little risky, but then my life is a little risky every day. One of the reasons I feel a little down at the moment is that dealing with cancer is bad enough without having to deal with what I feel should be a minor matter, the hernia, which seems to be getting worse. The worst-case scenario for the hernia is that it causes entanglement and blockage in my gut (apparently very painful) and I will need an emergency operation.
The stoma is sore at the moment and is bleeding. Apparently, the bleeding is perfectly normal but I am not sure that the most pleasant way to pass the dark hours of the night is to be cleaning both shit and blood out of a hole in the front of your stomach, especially when that part of your stomach sticking out because of the hernia. Well, it might be fun for some people but I am a little sick of it.
This abdomen of mine is like an old leather football people of my age had as a child, heavy and wet and with an inside bladder that bulged and eventually broke and needed repairing. It could not take many repairs before needing to be thrown away and replaced. The analogy fails because footballs are not usually full of cancerous cells and dangerous chemotherapy poisons.
The question is, am I prepared to go through any operation? After the last one, I signed the Do Not Resuscitate form and told everyone that I couldn’t go through that again. It was the worst experience of my life. Now things are a little different. Like women with childbirth, I have forgotten some elements of the pain and distress of the operation and its aftermath and have the feeling that life is still worth living and that I could go through an operation – as long as it wasn’t as awful as the last one – but I wouldn’t know that until afterwards anyway, so if it is offered I will probably accept. You can only give up once.
In addition to that above, I again have this tube sticking out of my arm which, when not pumping chemical poisons into my system is covered with a dressing and a tubular bandage which keeps falling off. The tube was there for six months. I had six weeks off and it is back again – in the same vein (literally, not figuratively).
Along with the chemotherapy, the pills to protect me against the side effects of chemotherapy, and seemingly permanent antibiotics, I am still taking my heart medication, seven pills a day. According to an article I read, 50% of people do not need this medication, but I don’t know which 50%, me or the other chap?
I have constant tiredness. When I was off the chemo I seemed to settle a little but now I am back to several hours in the middle of the night out of bed changing my stoma and reading. I did finish rereading Cormac McCarthy’s Blood Meridian last night. Great book but perhaps not the best choice at the moment with all the violence and death contained therein. If you are not under immediate threat of death I would recommend the book.
And then there is chemobrain. You must have noticed the amount of repetition in these blogs. As I have said before (sic) I don’t reread them, and with the chemobrain my memory is shot so I don’t always know what I have said. For those of you who see me be prepared to put up with it. I haven’t yet forgotten the name of a close friend or relative, but it is coming. Simple words often escape me.
Add up these problems and the water is rising to the top of the mental dam. Barnes Wallis may arrive with Guy Gibson at any time. OK, crap image.
This sounds a little negative so far so I had better buckle up that stiff upper lip. I am still having a good time. We have only just driven to the south of France and into Spain, and by which I mean me as I do all the driving. I love driving so it is great that I can still do it. We are planning lots of trips (assuming I get my pension paid, otherwise I am depending on those 10% of incomes you are supposed to be sending me, see Sopranos blog. Unsurprisingly I haven’t received any yet). I can still socialise, though not drinking alcohol with people who are drinking alcohol can be difficult, though my body is so gullible that pretending to drink with 0% alcohol can have the desired effect; and I turn into a pumpkin at 8pm so the evenings are rather short.
We have booked a couple of nights to a country house hotel in the Yorkshire Dales, and then a long weekend in the Lake District (it was supposed to be a week but the NHS gets in the way), so we are getting on with the important things in life.
I can still walk a little – a mile or two a day, better than nothing. I am hopeless with hills, which is difficult living in Derbyshire and enjoying visits to places such as the Yorkshire Dales and the Lake District. Norfolk is just not for me. I used to think that if I became so crippled I couldn’t climb up Kinder Scout that I would rather die. Rather melodramatic. There are other things to do.
I can still eat a lot. My appetite appears unaffected, though that is not so good when I am weighed each fortnight at the hospital. The graph has an upward progression – which doesn’t help the stoma/hernia. I have now officially started dieting, which means eating less of the cake that I eat to compensate for not having alcohol. We will see how it goes.
I can also talk the same old crap. I can offend people quite easily, which isn’t much of a challenge these days where some people seem to be offended by everything. Perhaps I may start to lose my inhibitions regarding what I say. In the end, what does it matter? I will blame chemobrain. Perhaps I will test that in another blog.
On a bigger scale, I have great social support from people, some of whom even say nice things (the rest of you know who you are). In terms of my working career, I think I managed to have a little impact, which is all we can hope for in a working life. I have made plenty of mistakes in both my personal and working life, and I will continue to make mistakes, but hopefully, overall the balance is on the positive side.
Please feel free to respond if you agree/disagree/getting bored with any of the above. I know some people don’t or feel they can respond, but despite my letting off a little steam above (note that in my book, Applied Narrative Psychology – plug plug – I argue that this sort of thing is healthy) my carapace is still intact so I can take anything – and I won’t be offended.
Dr Nigel Hunt 