Cancer 117
Posted on April 18, 2024 Leave a Comment
Another unexpected trip to the hospital. I don’t like unexpected trips to the hospital. They are depressing. They show that there are flaws in the ways my body is adapting and changing to cancer. It also means I will be spending more hours waiting, and will be jabbed and poked around with more than I expect. On the other hand, if hospital staff are doing something to help me – and they usually are – then suppose it is worth it. It doesn’t mean I have to like it.
This morning the district nurses came round in force, three of them, to take my bloods and sort out my PICC line. Unfortunately, my PICC line was looking a bit of a mess. It has only been in since last Tuesday (9 days) but it has been bruised and battered, it bled for the first few days, and the area around the line, the skin underneath the dressing is redder than Lenin’s underpants.
I had already changed the dressing a couple of days ago. I cleaned the area with my wet wipes (usually used for cleaning my stoma) and put on the new dressing. I am quite a dab hand at it.
The district nurses – quite rightly – refused to deal with the PICC line, and told me that I needed to go to hospital. To make sure, they phoned the hospital, probably aware that I would hide under a blanket and avoid the trip if at all possible. They also had problems extracting blood. Because they couldn’t use the PICC line, they tried to bleed me in the traditional way. Three jabs with the needle later, at one point appearing to jab me in both elbows at the same time, they gave up and said the hospital could try.
I phoned the rapid response line. They asked me to come into the triage unit. I was there for two and a half hours. A few people looked at my skin and pulled faces, a practical nurse put a cannula in and managed to extract a little blood, and others swabbed and cleaned the area around the PICC line, put another dressing on and sent me away.
I left the hospital, no longer depressed.
A normal day in paradise.
Cancer 116
Posted on April 2, 2024 Leave a Comment
I started this post a little while ago but got distracted by treatment and life. I was back at the hospital a couple of weeks ago because my PICC line appeared to be slipping out – something that is not supposed to happen but had happened to me a few weeks before. The PICC line enters a vein in my upper arm, goes through the shoulder and down to the top of the heart, so the chemo drugs can have maximum effect. It is held in place by a barbed wire (a bit like a fishing hook), and as I say, is not supposed to slip.
I went into hospital a week last Friday to have the line checked. Inevitably it had slipped again, so it was removed, this time painfully as the barb was stuck. I don’t like to be a whinger when undergoing treatment but there are times when I think I am becoming more sensitive to all the needles, knives, axes and bludgeons that are constantly used on me. The line needed to come out as it was infected. There was a heady whiff and a pile of goo as the dressing was removed. It was cleaned up and I was put on a week of antibiotics – different to the antibiotics I am on permanently.
At least it gave me over a week without a line attached. It is heaven not to have a plastic tube sticking out of your arm on a nearly permanent basis. My left arm was in a bit of a mess, partly due to infection, partly due to constantly being covered in a dressing, and partly due to having three PICC lines inserted into a single vein for the last 9 months or so.
Now it was the turn of my right arm. I had the new line inserted on Tuesday, the morning of my chemo treatment. It is a weird feeling having it in this arm. I had become so used to being unable to fully manipulate my left arm but now I have to learn the same for my right arm. While there is no significant restriction on the movements of the tabulated arm there is a psychological restriction aided by the occasional sharp pain of the fishing hook.
I had a tiring day having my chemo administered on Tuesday, perhaps it was partly because the new line had just been fitted, but I was feeling generally tired, not just because of the administration of the drugs, but generally. How long can I keep going with this regime? I occasionally get a feeling that each treatment, each impact on my body, each pain, ache or itch, the state of my skin, my stoma, my restricting hernia, each restriction I have, each problem, all the drugs every day, are tweaking my resolve to live. It is not easy having constant treatment which, while only occasionally painful, is having a permanent effect and there is no hope of getting better, only a continuous process of this until I die. I have repeatedly said I am not afraid of being dead, it is just the dying process that worries me, the potential for pain, not only for myself but for others around me.
For the third time since I returned to treatment after Christmas the pump bottle did not work properly. Perhaps less than half the drug that was supposed to be slowly pumped into me over 46 hours actually entered my body. The pump is primitive technology, relying on the pressure inside the bottle to slowly push the drug up the PICC line. Out of five treatments in this period it has failed three times and once I was not administered it at all because of the first slipped PICC line. I have no idea about the effect this has on treatment effectiveness.
On the positive side, we have had the kids here for part of the Easter break. That always boosts my morale. I did speak of my concerns regarding how long I can continue with the regime, but my son put me in my place, talking about all the positive things in life. It worked well. I do have so many positive things, mainly the people around me, family and friends. While I have little downers I have lots of uppers. Apart from the day of the main treatment every fortnight I generally feel well – though tired – and we can get around and do things. We are off to the Lake District again, and then down to Devon to see the kids. There are a lot – perhaps too many – activities in the diary. It is difficult finding spaces to see people or just sit around doing nothing.
I am a great believer in sitting down and doing nothing, just reading or writing these scruffy blogs. I also have things I want to achieve. I am writing my novel (OK, I am delaying writing my novel through laziness), I am planning my book on Wingfield Manor, I have a further novel I want to write. I have no idea whether I will have time to do these things, I have no idea whether they will be published, but they are at least positive aims. At the start of this process, I didn’t know whether I would get my Applied Narrative Psychology book finished and published, but it is out (buy a copy, Amazon or CUP site).
There is more good news. When I saw the consultant – actually the registrar – we discussed taking time off treatment so I could have a break and go on holiday. The results of my scan showed that there are no significant tumour growths. The main one is a little over a centimetre long and half that in width. The same as before. There is another little bugger poking around near my rectum (that didn’t sound good did it?), again no growth, and then the little army of potential units in its usual place around my abdomen. The registrar suggested that instead of taking 6 weeks for a break I could consider 3 months. She even suggested that the break could be longer if I don’t get any further significant cancerous growths.
I needed to think about this, but not for long. On returning home we booked our holiday in France, and then booked a break in Scotland for a few weeks later, ie into the second 6-week period. The decision is made. It is 3 months away from treatment. No PICC line to slip and cause pain and itching. No going to hospital for doses of chemo-poison.
We are off to the east of France, to the Jura. We have been to the area before. Two weeks booked in a house in the countryside, with a few days gentle drive to and from home. Have I said I don’t fly any more so we are restricted to how far I can drive. While my record from home is Crimea and back, my condition means we are unlikely to get much out of France. We will see. Ever the optimist perhaps we will get that drive to Sicily at some point. That will at least save me having to put up with Italian food, my least favourite cuisine in Europe. But that is another story.
Cancer 115
Posted on March 29, 2024 Leave a Comment
I I am still trying to get on with recovering from a few bad health weeks. I do feel a bit better now. A couple of weeks ago I thought that if I took a break from chemotherapy then I wouldn’t dare go abroad, even to France, so we were looking at holidays in Scotland. In my situation, you do become dependent on the NHS being around. Now I am back to thinking that perhaps we could cross the Channel for a break. I suppose that is a good sign.
Nevertheless, while I am over some problems such as pneumonia and fever, I am still troubled by health problems. Apart from abdominal pain, particularly when I cough, the biggest issue is my skin. We talk of skin being the biggest organ in (or on) the human body, and at the moment it feels it. My body has difficulty with cell repair because of the chemotherapy, and at the moment my skin is bearing the brunt of it. The area around the PICC line entry on my arm is still troublesome. Having a large dressing permanently over the entry point has led to a large red patch, with dry and brittle skin, which is very itchy. Obviously, I never scratch it (that was for any health professionals listening in. In reality I scratch it constantly), as that would make it worse (it does).
I use Plaizon cream around the area of the dressing to try and soothe it. This is my go to cream. I also use it on my head and anywhere else causing trouble. Unfortunately, most of the problem is under the dressing. I have been observing people knocking my body around for some time now, so I have learned some tricks. The dressing spmetimes comes off after a few days (or in the case of yesterday, around 12 hours), and I can’t always call on a nurse to sort it out. I have started changing the dressing myself. I take off the old one and thoroughly clean (rub vigorously, ie a substitute for scratching) the area using the wet wipes I use for my stoma. This is much better at cleaning the area than what the nurses use. I then use a barrier spray and once it is dry put on a new dressing. The wet wipes make a real difference.
The rest of my skin is also a problem. I have scratchy bits on my other arm, my legs, around my abdomen, and my head. The other day I banged my head – twice – and it seems to be taking a long time to heal. I used to have a hard head. I had headbanging competitions with a fellow bricklaying apprentice who fought wearing a crash helmet, but I still won. I also have sensitive fingertips again, which creates problems with everything from opening a bottle to playing my guitar (the latter may also have something to do with lack of competence).
Well, that’s enough about me. How do you feel? Actually, don’t tell me because I don’t care. In the last months, I have noticed that I don’t want to know about illness in other people. I have very little sympathy. I don’t want to hear about the health problems other people face. I just blank it out or get upset. Deep down what I have just said isn’t true. At one level I do care, but in the past, I used to listen to everyone’s problems. Now I am not interested. I suppose I just don’t have the resources for other people that I used to have. Cancer makes you selfish.
Cancer 114
Posted on March 19, 2024 Leave a Comment
For the first time in about three weeks, I am feeling fairly normal. I am sitting in the rooftop restaurant in the hospital waiting for my chemotherapy. Having cancer is a little like being in the armed forces. There is a lot of waiting involved and at the end of it a serious risk of death. Yesterday was a good day. I was in the hospital in the morning (lots of waiting) and we then went out in the afternoon. I had a meal and we went for a walk. By walk I mean I managed a good half kilometre on the flat, up the Monsal Trail from Hassop station which, by the way, advertises itself as a cafe and bookshop. It is a good cafe but there are no books for sale, just an area selling typical gifty junk, the sort of things I can’t believe anyone buys, the sort of thing that is a monstrous unpopped boil on society, wasteful, pointless, and designed to separate a fool from her (it usually is her) money.
I was in hospital yesterday to have my PICC line refitted. You may remember the last one slipped out a little during my last treatment. I have no idea how, and neither did hospital staff. Anyway, it was removed and I have just had a blissful week without a piece of plastic sticking out of a vein on my left upper arm, covered by a dressing and a sock. The skin under the dressing is in a dreadful state. Though I am colourblind I can see it is red. It recovered a little during the week but is still very sore.
The procedure for insterting a PICC line is straightforward, at least for the patient, who cannot see what is happening. The line is a thin tube of plastic that enters the upper arm, goes up to the shoulder, and across and down to just above the heart, so that drugs can be inserted straight to the point at which they will be pumped quickly around the body. It is an effective system, ensuring that patients don’t need endless cannulas, which for those who are lucky enough not to know, are not small Italian cakes but needles placed in a vein in the hand or arm – or elsewhere – strapped in place with a valve so that drugs can be administered. I have one fitted for each CT scan so the dye can be injected.
First the length of the required line is measured and cut to size. My line is 52cm underground and 3cm above ground. The patient is covered as for an operation, a little peeky hole where the nurse will insert the tube, and local anaesthetic applied – which is administered by needle and always stings. The patient is made to look elsewhere with the pretence that he or she needs to be in a certain position. I do think it is to ensure they don’t see the tube disappearing into their arm, then after a few seconds it is in, the nurse is finishing off by sticking a small plastic tube cover to the skin using fish hooks, barbed needles which hold the line in place, ensuring any mess is cleared up, which is usually nothing or very little, and chatting the whole time to reassure the patient who is often very nervous. I was not nervous. After all, it was the third time. I can now put up with most procedures with equanimity. The worst things that happen are a) sticking a camera up your backside. Given that I am missing a chunk of colon I am hoping that won’t happen to me again, and b) having a big stick up my nostrils as a Covid test, which I really hate. I know lots of you will have had that test many times and wonder what the fuss is about. I have had it three times and for me I would rather have a 30cm slit cut into my abdomen and half my guts ripped out by the surgeon’s teeth. At least for that I was unconscious.
So, my PICC line is in and I now need to go to the cancer ward (no they don’t call it that but a little Solzhenitsyn does no one any harm) and have a few pints of poison thrust into my body. The phrase, ‘Whats your poison?’ used to mean something so much nicer in the old days.
Cancer 113
Posted on March 15, 2024 Leave a Comment
This is just a short post to let you know that I am all right again now. I feel as fit as a (rather decrepit) fiddle. No more talk of dying or pneumonia (at least for the moment), though my blood results are showing up some other issues. I have a slightly overactive thyroid, which they will retest later to see whether there is a problem. My potassium levels are a little low, so for the first time in four years I have been told to eat bananas, rather than be given drugs, so bananas it is. I am also running on the edge of Type II diabetes. That can’t have anything to do with eating too much cake and chocolate, as I have cut right down in the last few days. Apart from these minor issues, I am healthy. Well….
Only yesterday I would not have dreamed of going anywhere, but today we (I) drove to Birmingham, the big city. As some of you will know, I detest cities and spend my life staying away from them as much as possible with their buildings, their people, their smelliness, dangers, and noise. Today we went to the Birmingham art gallery to see an exhibition called Victorian Victorian Radicals, which focused on art from the Pre-Raphaelites to the Arts and Crafts movement. Being colourblind I know nothing about art, but I do quite like an exhibition. I have never been impressed by the Pre-Raphaelites and I felt justified in my views when I looked around at the paintings. Why did these people proclaim that a medieval approach to understanding the world through art was a good idea? There were a few pots and tiles that were OK, though I still prefer Andalusian tiles, and to be honest Denby Pottery. I know, I am artistically uncouth. I also thought that it was a shame that the people in the Arts and Crafts movement were influenced by these dullards. I love Arts and Crafts architecture but come on, their wallpaper is a bit dull.
Two general points about the exhibition, one good, one bad. The good point is that they supplied folding chairs for crips like me to take around and sit down wherever I felt like, which was a real benefit. One of my biggest problems now is getting around an exhibition without being able to sit down for a few moments. Well done Birmingham. On the other hand, and this is a universal problem, why oh why provide audio guides? At one level I don’t want people telling me where to look, but for those of us who do not want audio guides the constant noise from them is very irritating. Either cut the volume down or burn them in the street. They are a terrible invention. They detract from whatever it is the person is out to see, whether that is a painting or a castle. If you need further information buy a book.
We walked a little around Birmingham. I still cannot walk very far, so had to give up on getting to Waterstones, but we saw some magnificent buildings. Not just older stone and brick ones, but also modern edifices which blended well with the old. We went inside one, were confronted by reception staff, had a good chat and found out about an expensive restaurant on the 24th floor. Naturally, a certain person wants to go there. It won’t do any good to say I am a pensioner now.
Instead of that restaurant we went to Nando’s. Nothing wrong with Nando’s. Half a chicken, peas and chips, with hot peri peri sauce. Grand.
Dr Nigel Hunt 