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.
Cancer 78
Posted on September 26, 2023 Leave a Comment
I’ve felt a little odd over the last couple of days. I get this regularly, and it usually occurs in the middle of the chemotherapy cycle. I can’t describe it exactly. It is not like being normally ill with a cold, aching joints, a snuffly nose, or a cough. It feels slightly alien, certainly unknown.
There are elements that are easy to describe, such as diarrhoea, but when you have a stoma even that isn’t normal. Instead of the normal symptoms of diarrhoea my bag fills up, usually quickly, and with a rather liquidy substance – bear in mind that I have a chunk of my colon missing so even normal faeces don’t get a chance to harden up properly. It is potentially hazardous, especially if I am asleep and it fills. As yet I have not had an explosion in bed with all its easily imagined consequences, but it could easily happen. Perhaps that is partly why I am out of bed so long on these nights.
It is the other elements or symptoms that are difficult to describe. I am tired, but it is not like normal tiredness. Sleeping doesn’t resolve it. There is a feeling inside, perhaps best described as being out of sorts. I feel sick, yet I don’t feel sick – my appetite is fine, and I do not throw up. My head feels queasy (is that even possible?). I feel dizzy yet not dizzy. Sometimes I have to stop and reorient myself, yet I am not disoriented, though I am.
I feel at the same time quite ill and quite well. The illness tends to be in a sense on the surface, because underneath I feel quite well, yet at the same time underneath I feel quite ill but on the surface I am fine.
I am not very good at describing these symptoms. I suppose it is because I don’t have the words to describe how I feel. Normally we are able to describe thoughts and feelings, and put them in words, because they are normal, and we have spent years learning to describe them accurately. I have only had a few months to learn this new terminology and I am not very good at it.
I understand why I have the symptoms. I have chemotherapy drugs that make me ill and other drugs to counteract being ill. It gets very complex, and it is no wonder that my body protests.
I am reaching the point where I am utterly sick of going to the hospital for my next treatment. I have now had eight cycles, and there are likely to be four more before I take a break. These indescribable symptoms raise their cancer-ridden heads whenever I think about going to the hospital, and it gets worse each time. Much of this is in my head. Yes, the symptoms do seem to be building up little by little, but I know it is at least in part just my way of thinking. When I am in hospital I do function, though it is the one point of the cycle when my appetite is affected.
We have booked a holiday. While on chemo I cannot leave the country, but when I take a break I can. We are going to France, to stay in a house in the foothills of the Pyrenees. I don’t think for a moment that I won’t be able to drive down through France. I am looking forward to it. I am hoping and assuming that when I take this break from chemotherapy these symptoms will, at least temporarily, disappear.
Cancer 77
Posted on September 20, 2023 Leave a Comment
I have a new variation on the old Boomtown Rats song. My version is: “Tell me why I don’t like Thursdays.” Not very original, I will admit, but appropriate to the last 4 months of my life, and presumably/hopefully the next two months.
I noticed today that I keep speaking of tomorrow, meaning what is happening on Friday. As it is now Wednesday I think I might be unconsciously removing Thursday from my life. I have two reasons for this. My Thursday variations are that tomorrow I will have my chemo manbag removed (the nurses call it a manbag, I am sure there are better names for a bag full of chemo chems attached to the tube that goes into my arm, up around my shoulder and through to just above my heart, so the chemicals can get to do their stuff quickly), but I never know what time. It is on a 46-hour programme (if that is the word for a slowly shrinking bubble pushing the chems into my body one drop at a time). Usually, it means the nurse comes around 2-4pm, and I am always frightened they won’t turn up so the damn bottle stays attached for longer than two days, perhaps forever.
That happens every other Thursday. On alternate Thursdays the nurse comes around and takes blood samples. That has to be in the morning so they can be processed quickly so the consultant can look at the results the following day and see whether I am fit enough to undergo the next round of chemo, starting the following Tuesday. On these Thursdays I am frightened that they are not going to turn up on time. Thursdays are frightening days – though the nurses have turned up every time so far.
By the way, I like the nurses. They are friendly and know what they are doing. When I say I don’t like Thursdays it is not because of the people involved.
The routine overall is becoming more tedious. The two week cycle consists of First Tuesday, in the hospital for hours having several chemo drugs pumped into me while I sit on an uncomfortable chair bantering with the nurses. It is largely politically incorrect, unwoke, or whatever term is appropriate. I like nurses. There is a lot about death and various abuses of the system. There are few jokes as such, but it is good fun. Yesterday I came up with a Stephen King version of Solzhenitsyn’s Cancer Ward. An improvement I think, certainly if I write it it will be a lot shorter than the standard books by Solzhenitsyn and Stephen King. It probably won’t be as good either. OK, I will give away the secret. Eight patients are in the ward, and there are about three nurses. Over the period of a day one or more of the nurses kills of the patients one by one, in various ways nurses are expert at (I particularly like the snipping of the spinal cord with scissors. The surviving patients don’t realise people are dying at first, and when they do realise they become trapped in the ward. OK, I haven’t worked out all the details yet but either all the patients will die or, perhaps better, one patient survives and kills off the murdering nurse(s). I need to do a bit of research into the best ways nurses can kill patients, so I will ask them next time I am in. When discussing the story there was a bit of an undercurrent regarding Lucy Letby as it is recent, but hey, we’re all going to die. I don’t think it upset anyone but who knows? The name of the killer nurse? I think her surname will be Ratchett, or something like that. I have a first name but she might read the blog, though I did tell her.
And this is what I do on the first Tuesday of the cycle. I then have the bottle attached until the first Thursday, so Wednesday is a bit of a letdown. Once the bottle is off I am free for six days. This is when we have been going away, though not in September, unless you count going to Oliver Cromwell’s house in Huntingdon (one of the two English greatest men, you can guess the other one on the basis that Cromwell is one). Then it is the second Thursday. The following day I see the consultant or the cancer nurse regarding whether I can continue my treatment. So far my results have been as good as can be expected, including last week’s scan. The bastards won’t go away and never will but there is some shrinkage.
Then I am free over the weekend and back to first Tuesday. I have now nearly completed 8 cycles out of 12. I then hope to take a break. They will remove the PICC line from my suffering veins and I will be free for a couple of months. We hope to get to the south of France for Xmas. I hate Xmas. We are looking at a nice house in Certe, close to the Spanish border, close to the escape route for LLuis Companys, President of Catalonia during the Spanish Civil War.
Dr Nigel Hunt 