Cancer 83
Posted on October 23, 2023 Leave a Comment
I know people like to say that I am ‘living with cancer’, but I do prefer the practical ‘dying of cancer’. I don’t know how long I have, but the cancer isn’t going away and I certainly will die of it, unless I get hit by a bus, but that is unlikely as I try to avoid public transport.
The last few weeks have been a bit of a challenge. After 7 rounds of chemotherapy I was happy that I had been dealing with it well, and my only side effects were tiredness and a little diarrhoea. No problem. Then I was hit with the all over head rash, and the first threat that I wouldn’t receive my next treatment. I got over that, the rash is now minimal and I am on antibiotics to help it. I have been on antibiotics for nearly three weeks. I am not used to having antibiotics for so long, but I suppose it doesn’t matter what I am given now as long as it might help a little. Last week at treatment I had a bit of a sore throat and they noticed a cough, so they made me have a Covid test – my second ever, and I really do not like sticks being shoved up my nose. It was negative but I have had a bit of an infection ever since, and felt quite down.
I was rough with the infection two days ago and started to feel about death (feel, not think). It felt surprisingly all right. I had positive feelings about slipping slowly down to death. It wasn’t sad, it wasn’t despair, it wasn’t depressing. It just felt like it was meant to be. Today though, I feel a little better. I still have the infection, I am still moving only slowly and not managing to do much (though I smoked a side of salmon yesterday), but I don’t quite have the urgency of the dying feeling.
I suspect my lack of despair regarding slipping towards death is related to my lack of fear of death. Death is nothing. I was not alive for billions of years (a terminology that means nothing) and I will not be alive for billions of years. So what? Will I miss anything? Of course not. I can only miss something if I am aware that I am not there, that something is happening that I am missing. How can I experience that when I am dead?
It always, though, comes back to the real fear, the fear of dying, the fear of pain, the fear that I will be missing something in the future. I worry that this fear of missing something may make me unhappy as while I am alive I still have a sense of the future. That brings me back to this feeling of slipping away that was happening. If feeling this overrides the fear of dying, the fear of missing something, then surely it is a good thing, a way to have a good death?
But perhaps not yet.
Cancer 82
Posted on October 17, 2023 4 Comments
I am back in the chemo room. Because I have a bit of a cough and a sore throat I have been tested for Covid for the second time in my life. A horrible experience. I don’t mind being jabbed with needles, having my abdomen opened up, having a stoma fitted, watching Strictly Come Dancing (OK, I have never watched it but you know what I mean) but having a stick poked up my nose twice is far worse – which is why it is only the second time I have been tested. If it was positive they won’t give me chemo. Fortunately the result was negative. I know my immune system is a wreck but I would rather go ahead with the treatment that might hold my cancer at bay rather than have it stopped because I have a bit of a cough and a sore throat. Add to that my being very tired so please excuse bad wsriting today.
It has been rather an unusual few days. I put a trivial/petty post on Facebook saying that the dual language signage on Welsh roads was potentially dangerous, and that Welsh is a moribund language – both points being supported by evidence. I was in most/all of the national papers, the BBC (front page for a while), Sky News and so on. Jacob Rees-Mogg wanted to interview me on GBNews. I might have done the interview had I been well, but the interview was after 8pm I would have turned into a pumpkin, and pumpkins can’t speak.
I have been in the media plenty of times but it is usually because of my work, and I haven’t in the past received hateful comments from people who prefer to insult rather than construct an argument. Most of the/se hateful comments were as a direct response to my Facebook post. Someone reported me to the University of Wrexham where I have – had – a visiting professorship. The VC sacked me. She claimed they were having an investigation into the matter but they didn’t include me in this, and it was a very short period, less than one day, between the comnplaints and the sacking. Not much of an investigation there.
The university also issued an apology for my behaviour. In my view they should have issued a statement supporting me, both in relation to accepting that people have legitimate views, and in response to the hate speech directed at me.
Since the sacking and the media interest most of the comments and emails have been in agreement with me, which is not surprising given that the evidence is that dual language road signs and fewer people are speaking Welsh, despite the ridiculous and expensive support of the Welsh government and other organisations. Several of the supporting emails I have received have pointed out some of the problems with the Welsh government supporting the use of Welsh, such as sending letters out in Welsh when three quarters of people don’t underfstand it, or councils being forced to put Welsh on their signage when they wanted to focus on English to help emergency workers.
Some of the comments dirfected against me suggested that I would have difficulties driving in other countries. The reality is that I have driven in more countries than most people, including most countries in Europe, China, India, and North and South America. I can read Cyrillic, so I am fine in places such as Serbia and Ukraine. Most languages are at least partly intelligible becuse they share origins. The biggest problem I faced was China because I don’t understand the character. The second worst is Wales, partly because of the dual signage generally, and partly because there is nothing in the language that an English speaker can get hold of, few similarities with other languages.
Welsh is not the national language of Wales, English is the national language, just as it is in the rest of the UK. Welsh/ is a minority language that is gradually dying despite efforts to revive it.
Media interest has calmed down now, but I have written an article for The Spectator, so we will see whether that kicks things off again. Fortunately the Wrexham post was honorary, so it has not changed my financial position.
The main issue out of all this is that of free speech, and how the University of Wrexham does not appear to believe in it. Someone on Facebook reported me for my comments. The vice chancellor’s kneejerk thoughtless response to this was to sack me. The reason given is that the university has a policy supportive of the Welsh language, considering it equal to English – when it patently is not equal. Any member of staff of the university has to obey this diktat or face the consequences. They can’t have views of their own. It is quite frightening that an organisation that calls itself a university does not allow people to express an opinion (in this case one supported by evidence) that differs from the received ‘wisdom’.
It becomes a little farcical if you remember that during one of the Covid lockdowns the very same VC took herself off to Ireland, blatantly breaking the law. It appears that the University of Wrexham condones lawbreaking but not someone expressing an opinion in the private sphere.
Another matter of some importance is the reaction of some people both on Facebook and a few (very small minority) of the emails I have received. The original post was on a Facebook group relataing to petty rage – note the word petty – so in my view I thought the group was about people expressing a view, and then people responding either with an argument opposing the view or with humour, but no, people who disagreed with me often expressed hate and abuse, and – significantly – failed to recognise what I actually stated. I said nothing against the Welsh people or the use of the Welsh language generally. People can speak whatever they like, and I have nothing against the Welsh.
I was called a racist (the Welsh are a different race? That is news to me. I thought they were British, just like me) and a xenophobe. If that were true I could not have functioned in my real job for so many years where most of the people I dealt with were of different races, cultures, and nationalities.
If the language becomes more popular then at one level that is fine – though the main purpose of language is communication, and so Welsh speakers, unless they also speak English, may have serious problems. Of course, as they all speak English, why not just have the signs in English? It will enhance road safety, which is surely more important than a nationalist obsession.
I do hope that the views of the VC of the University of Wrexham do not reflect the views of staff members. I hope they believe in free speech, otherwise the university shopuld just close down.
I wondered why these people could not construct an argument and resorted to hate speech – then I remembered the result of the Brexit vote.
Cancer 81
Posted on October 5, 2023 Leave a Comment
OK, overall that was a bad week. I felt for the first time that perhaps I was on my decline and I didn’t like it. I am not ready for it, but I am trying to be honest with this blog so you get the bad with the good. Fortunately, I am back to feeling well and positive, though I went through an added blip yesterday when I went to the hospital for my chemo.
I arrived at the hospital early, to ensure I could find a parking space. I always park in the University of Nottingham site but even that can fill up. I went to Aldi to buy food as the hospital food for day patients lives up to its reputation. Back in the hospital, I ran into nurse Ratchett, one of my nurses. She took one look at me and asked why I was in the hospital. I looked very ill and I wouldn’t get my treatment (it can be worrying to be told you look very ill by a nurse – they tend to know what they are doing). I should point out that when I go from a relatively cold place to a relatively warm place, and I am wearing too many clothes, a jumper in this case, I sweat profusely. I have been known to literally steam from the top of my head, though I didn’t on this occasion.
There is a unit within the oncology department that I am supposed to phone if I am ill or having any abnormal symptoms – at any time, day or night. Nurse Ratchett told me I should have phoned them as I had a severe rash all over my head and I was sweating. I told her that I was fine and that phoning the unit was for ill people, not me. She was a little exasperated and told me I should report as usual but that I wouldn’t get treatment and that I would be bedblocking (chair blocking actually) for the day.
I wasn’t happy but I did as I was told, as I always do when a nurse shouts at me.
On arrival, I went into the bay where I got shouted at again as Nurse Ratchett had told everybody what she had seen. The disadvantage at this stage of treatment (round 9) is that many of the nurses know me. I should perhaps be quiet and unobtrusive instead of loud. Fortunately, this nurse, let’s call her Nurse King, likes me because I talked to her about writing and she is enthusiastically starting the process of looking at writing courses and structuring a book. I have achieved something in my time on the ward. I sat in my chair and waited to see what would happen.
A specialist nurse came and assessed me, looking at my rash, which fortunately is only at the top end of my body and has penetrated no orifices. She asked me lots of questions about other symptoms. I confidently, if not entirely accurately, said no to everything except tiredness. My obs were fine. She left to confer with my consultant, after which I learned that I would get treatment, so I pulled an appropriate face at Nurse Ratchett and received my treatment. The day went as usual, though delayed so I didn’t escape until 5pm.
I was given an antibiotic for my rash, which I have to take for two weeks, and also some moisturising cream (ahem) so I am setting another record for the number of drugs I take. The rash is possibly an allergic reaction to another new drug I started last time. I don’t think anybody really knows, as there are so many drugs that inevitably interact with each other in possibly unpredictable ways. Still, an antibiotic can’t do any harm, can it?
I am currently attached to my bottle of fluorouracil, 5000mg to enter my body over 46 hours. It means I don’t go to bed, and I sleep very little, but at least I got my treatment. Fight hard folks, claim wellness, and wellness will be thrust upon you.
Today we drove to Lichfield, perhaps my favourite UK city (because it is small, has several bookshops, and both an Erasmus Darwin and a Samuel Johnson museum), and ate well. Friday we head to Pembrokeshire. It has a coastline, but I can’t have everything.
By the way, I should say that I have a good sparring relationship with Nurse Ratchett, and the name – shockingly not her real name – was applied to her by me in her presence and is used in the general banter that is virtually continuous during the day between nurses and patients. I have said before that the nurses are incredibly positive people. I don’t know how they do it day after day in such a place of sadness and despair, but they keep most of us cheerful while we are undergoing what can only be described as unpleasant procedures. If the Tory Government wanted to do one good thing in the time they have left (not much I hope), then improve the pay and conditions of the nurses. They are the ones who see the patients continually and keep the whole edifice of the NHS functioning at that critical junction between patient and treatment. Consultants make the key decisions, but nurses do the implementation, and they do it in a very human and reassuring manner.
Cancer 80
Posted on October 1, 2023 Leave a Comment
One thing I have been wondering about is the way people react to cancer, and particularly the difficulty some people have with communicating with the person with cancer. I must say at the start that most of my friends, acquaintances, and colleagues have been very good. They have contacted me, communicated with me, called me all the usual insulting names along with some new ones, and visited me. Of course, there was more of it when I was newly diagnosed and recovering from hospital, but that is the nature of serious illness. It is exciting for a while and then things calm down and a new normal is created. Now I am not exciting enough to visit.
Basically, when people expected me to die quite quickly, they visited more. Now I seem to be surviving for a while I have gone back to being boring and normal, but I’ll show them….
Some people have difficulties with cancer and other serious and life-threatening illnesses. They don’t know what to say or how to respond. I know this is the case with some people regarding my situation because they have admitted it. From my perspective I would say, don’t be daft, just get in touch as normal. I am still here, I am still alive, I am pretty much the person I was, but with a somewhat shorter predicted lifespan. That shouldn’t make it awkward to contact me or talk to me. If you ask me how I am you will probably get a more detailed account than ‘fair to middling’, but if you don’t want the gory details of the action of my stoma then don’t ask. I won’t be offended. Well, I might but that is my problem, not yours.
Arrange to visit, you might even get a cup of tea. The only real differences now are a) don’t ask me to go for a long walk/play football, as real exercise is no longer my thing, b) I don’t really like being around alcohol (that is a bit of a change I admit) so cafe rather than pub, and c) don’t be upset if I cancel at the last minute because I am having a bad day. At the moment I don’t have too many bad days but I reserve the right to cancel events as necessary.
This isn’t a plea for everyone to come and see me; it is more of a point that those who know someone with a serious illness don’t be afraid to get in touch with them. You can’t really say the wrong thing – well you can but you can do that with people who are not seriously ill, so what is the difference? If you suggest to me that my cancer will be cured or that I could live for 10 years because you know someone who did survive that long then that will irritate me, but so what? How would you know which particular topics might be upsetting or irritating? We are all different. And it is not just about the illness. If someone comes up to me and says Brexit was a good thing or that the current Tory government is not the most corrupt in living memory then that is going to annoy me.
The point is, to stay in touch with the ill person. Don’t be afraid to contact them, and don’t worry about saying or doing the wrong thing. If they don’t want to see you they will say so. By the way, I have moved house, had a face transplant, and changed my phone number….
Cancer 79
Posted on September 29, 2023 Leave a Comment
It hasn’t been a good week. I haven’t slept properly for nearly a week. I get very tired, then lie in bed wide awake, so I get up, read a book, get tired, try to sleep, don’t succeed, read a book, get tired, and so on. Usually, it happens for a couple of nights and then I get my full 5 hours, but not this week.
My head skin is coming apart, with a rash from my chin to the back of my head. I feel like a baddy from a Batman film with a particularly revolting mask. I am using Moogoo, which is designed to ease the udders of cattle. I am not sure if it is working as I don’t know what I would look like if I wasn’t using it. It is the first time in my life I have used moisturiser.
Then after a bout of diarrhoea that was resolved with my Loperamide this morning, I had an instant fill and spill, so my flowery shirt received some natural fertiliser. It has never filled so quickly. Again the Loperamide seems to have worked.
All in all I feel a bit of a miserable git. I went outside with my axe and mini chainsaw to relax, which worked to some extent. I have also had the good news that my new car will be ready for me to collect in mid-October, so I should get to drive it unless the downhill slope is a black one.
In other news this morning I was told that I wouldn’t be able to do the full holiday in France at Christmas because I can only be off chemotherapy for six weeks – otherwise we lose the funding. Fortunately, a later phone call clarified that it would after all be possible, so I will classify that as good news.
So, overall that is two bits of good news. I will focus on those rather than the horrible side effects I am experiencing. Fortunately, my bloods, etc are ok which means my treatment will go ahead on Tuesday. I am not looking forward to it. Actually, I feel a little sick just thinking about it. I have had enough. This is my ninth cycle of twelve before I get to lose the PICC line and drive down through France in my new car. I have begun to understand why people give up on chemo, wanting perhaps a shorter life but of better quality.
It is a little depressing to read that the chemo I am on tends to work for up to 12 months. I am not looking into what the options are after that, partly because it is best not to know. I plan for the shorter term. After getting back to treatment in January I may go through one complete cycle (6 sessions, 12 weeks), and then take another break if possible. We want to drive down to Greece. Don’t tell me to fly. My hobby is driving. Airports are awful. Not only do you have to hang around forever but you have to mix with other people. Fortunately, I now have an excuse. ‘Sorry folks, I can’t fly because I have a compromised immune system.’ I should have thought of it years ago.
I will continue to persevere. Giving up is not an option, certainly not yet. I am sure there will be a point where I say sod it, but I have to finish all these long books I have started reading. I have to go to France. I have to go to Greece. We have short breaks arranged for Wales and for the Lake District. I have to finish my novel – don’t ask, I have stalled around 20,000 words, not because I don’t know where it is going but because I am lacking energy. I will get back to it next week.
Dr Nigel Hunt 