Cancer 132
Posted on July 20, 2024 Leave a Comment
I am writing this from the Rijksmuseum in Amsterdam. I don’t think I am meant to be abroad between rounds of chemotherapy so don’t tell anyone.
I had my chemo bottle removed around 3pm on Thursday, then we immediately set off in the car to Harwich, staying in a Premier Inn at Colchester before getting the ferry to the Hook of Holland yesterday. It was delayed due to the Microsoft failure, but we got here eventually. At the hotel the wife donated half of her large Wienershnitzel to join my Wienershnitzel on my plate. Given the nature of my stoma that may not have been the best idea but it was delicious.
This morning I was frightened. I was venturing into a busy city with tubes hanging out of my chest, a stoma bag attached to my belly, and an elastic support for my hernia. This is very unlike my first experience of Amsterdam, lying outside the station with scruffy long hair, a backpack, and listening to live music.
I was frightened because I don’t want people crashing into me, yanking the tube out of position, or being caught with a rapidly filling or leaking stoma. I hadn’t been on a train for at least five years, but not only did I use the train, we also went on the tram.
The Rijksmuseum is still impressive. I spent all morning walking around it. Very tired now, but I hope to walk a little through Amsterdam.
No accidents so far.
I am really not used to so many people being around. I don’t like it. It has taken a real effort of will to get myself into the city. I am looking forward to getting out safely.
Cancer 131
Posted on July 16, 2024 Leave a Comment
Well, here I am again, in the depressing rooftop restaurant of Derby hospital, the food choice consisting of poor quality standard breakfast items. I just havea cup of tea, unfortunately in a cardboard cup which does nothing for the environment, and is called a coffee cup despite its contents. There are ill people around me choosing platefuls of breakfast, which I am sure does nothing for their health. This is a hospital. The food choices are appalling. There is this restaurant, the highlight, which sells poor quality food throughout the day (think pies and chips), and which also contains that well-known gas mark requiring franchise, Subway. I have never eaten a subway, but from the vile artificial smell I suspect what remains of my digestive system would not be impressed.
Other than this restaurant there is a mediocre cafe on the same floor, where they will routinely add milk to the teabag in the water for the tea, always a sign of a lack of understanding of good taste and chemistry. These two are on the 5th floor. On the ground floor, there is the ubiquitous and iniquitous Costa, providers of cups and saucers with the saucer offset from the centre to ensure spillage. As a coffee hater, there is little for me. I went once to drink tea when there was no choice and they offered me cake. It was just after 7am. Who wants cake at breakfast time?
The only other alternative (apart from the university cafe at the other end of the hospital from which I am now excluded, and which is also poor quality) is Marks and Spencer which sells the usual M&S stuff. It is difficult to even get a sandwich as they all contain Mayonnaise, or ‘Mayo’ as presumed lovers of a certain Irish county call it. I do not like the stuff, it ruins the flavour of whatever is being eaten.
I haven’t mentioned the choices when one is an inpatient, and I really shouldn’t.
So, the choices include ultra-high-processed foodstuffs, foods with countless chemicals, and generally poor quality ingredients. This is meant to be a hospital. Good food is essential for health and essential for recovery. There needs to be a wholesale review of the offerings in the hospital to provide a far better quality choice.
Treatment continues apace. My Hickman line is holding out, though the area around is very red, and the point of entry continues to ooze and bleed. I change my dressing most days. I don’t think it will work over the long term. My bloods are ‘normal’, and so my chemotherapy has been authorised. Last week I had a CT scan, and I find out the results next week. So far they have all shown little growth and some shrinkage, so fingers crossed.
Now the weather is better (except it is raining this morning) I am getting a little more exercise. I did 11,000 steps the other day, a rarity for me.
Don’t tell any of the NHS staff, but assuming treatment goes ahead normally today and assuming I don’t have a worse reaction to it than normal, we are heading to the Netherlands for a long weekend. The wife needs her dose of art, and has never been to the Rijksmuseum. Personally, I dread the thought of Amsterdam. I really do not like going to cities now (I never have, but that is a different story). I fear my bladder control (thanks diuretics), my stoma (unpredictable filling and need to change), bumping into people (with a long line emerging from my chest, taped down, my hernia, my stoma. They all make me vulnerable), and generally getting tired very quickly when walking. Crowds are really not my thing now.
I will go to the Rijksmuseum but I might keep out of Amsterdam for the other two days, perhaps head up to the Frisian Islands, or somewhere else as remote as you get in the Netherlands. Ideas please? I would go to Arnhem but I am trying to expand my interests, and yes of course I have been before. There is a bunker museum at the head of the Ijsselmeer, and a windmill museum, so the possibilities are there. I would rather spend a day at aa windmill museum than a day in Amsterdam.
It reminds me of the stag do I went to in Amsterdam, where the group split into two parties. One party headed for the Red Light district, and we (including the stag), hired bikes, and cycled to the coast, where we had an ice cream. That was a good day. We ended with a nice meal and bed by 10pm. That was when I was healthy.
Cancer 130
Posted on July 2, 2024 Leave a Comment
I felt worse than an England fan after 94 minutes of the recent game when I got up this morning. Depression and misery are everywhere in my head. I feel a bit better now, but not everything is resolved. After delays to treatment, I had my blood taken on Thursday as usual in preparation for treatment today. I then had a phone call on Friday to say the samples were corrupted so could I come in to the hospital to have more blood tests on Monday? Yes, of course. I arrive in the morning, and my blood is removed. I was told that I would be phoned around 1600 to see whether I was authorised for treatment. No one phoned. I phoned them and was told that no one had authorised treatment. Could I come in early this morning? Yes, of course. I arrive at 0800. Treatment has not been authorised, but within half an hour, it is. I have no idea what the scores were, but presumably, they looked reasonably normal, as usual.
Unfortunately, late authorisation meant that I would be treated late. I spent the next three hours in the so-called restaurant on the top floor, drinking tea, reading, and scribbling. I returned to the unit at 1100 to see a sign saying, ‘Two hours delay.’ Great. And my drugs haven’t arrived. Back to the restaurant for more tea. Arrive back a little after 1130. I am called into the bay shortly afterwards and told my drugs still haven’t arrived. I am put on a drip. I am still on a drip. My drugs still haven’t arrived. It is 1248. Given the length of time my drugs take to be administered, it is going to be a record late one tonight.
I am still having trouble with my Hickman line. Dressings won’t stay on for more than one day. The skin is red and uncomfortable. The pain is something between a bad itch and a stabbing pain. I can’t stop scratching it, though I try. In the end, the line will have to be removed because of the damage to my skin and probably infection. The nurses suggested I should have received a portacath, which is a central line that is embedded beneath the skin and doesn’t need to have a dressing. I am not clear why, given my history of infection, they didn’t insert a portacath in the first place. Presumably, it is the expense. It costs more than a Hickman line (my current bother) and is often used with younger people who have to consider their appearance – unlike me because I am too old to care. Oh, sorry, I have never cared about my appearance.
The other problem with the Hickman line, which is inserted into the chest, goes up under the skin to the jugular at the throat, inserted into the jugular, and fed down to the heart, is that there is a long line sticking out of my chest which gets in the way and is liable to be yanked out of position. I have already pulled one of the stitches out so it is a bit more dangly. It makes it difficult for me to be open-chested, showing my magnificent chest hair and my gold medallion on a chain, because this plastic pipe gets in the way.
The portacath is a better option because it is a small chamber sitting below the skin, attached to a line which goes through the vein to the heart. It is difficult to see unless you are extremely thin, so I won’t have a problem. There are fewer problems with infections because there is nothing on the surface of the skin. It may be expensive but I am worth it, aren’t I?
It is now 1302. That is how long it takes to write a blog and eat three ginger biscuits. No change here. Still waiting for the drugs.
Cancer 129
Posted on June 25, 2024 Leave a Comment
I arrived at the CDU (the cancer unit) this morning more in hope than expectation. Probably due to a chaos of people, no one had sorted out the deferment of my treatment from last week to this week. My infection of last week is now cleared up, and so I could be treated, but no one had got their act together, so it has been arranged (hopefully) for next week.
I could be angry that I am not receiving treatment again. Treatment is aimed at thrashing the bastard little lumpy things in my abdomen, and if I don’t receive my poisonous cocktail then the bastard little lumpy things will become bastard big lumpy things and bang – it is all over. On the other hand, not receiving treatment means that I have another week of feeling better and getting around more. It is a fine balance between wanting treatment to prolong my life and wanting at least some time when I feel well. At the moment, I am sticking with wanting treatment, but who knows how long that will last?
The wife made a joke yesterday. I was looking at the possibilities for a new phone. A certain phone offered seven years of updates as one of its selling points. The wife said, “You won’t need that, then.” It sounded better in the flesh, but it is not like the wife to make such jokes. Perhaps I should be offended? I don’t think so.
We picked up two new kittens yesterday, partly to replace the kitten that died on us the other week. They are called Die and Camilla. I named the first one. And no, it is not about death. The kitten has a spot on its back. I do like having animals around; they help my mood, even cats, which are intrinsically evil and hateful. I would rather have chickens, I relate to them better, and like talking to them, but looking after them is more of a hassle, and once I become fully incapable then it is impracticable. To be honest, it is impracticable now, given the limited amount of help I provide around the house. It is not that I don’t want to help, and often I feel I can help, but in the end, it is very difficult to do things. I am building up to going outside and clearing up the front garden, something I should have done weeks ago, but it takes time to work up the energy, and even then I can’t get much done before I have to sit down.
It is shit knowing that this is only going to get worse.
Cancer 128
Posted on June 20, 2024 Leave a Comment
Hospital again, for the third time in a week. Each time it is over 30 miles round trip, and then, because of limited parking, I have to get in early (by around 0730) to ensure I get a space, irrespective of the time of appointment. This then means that only Costa is open to get a cup of tea. As the place stinks of rancid coffee, I prefer to hang around in a corridor (as I am doing now) until 0800 when the main restaurant opens. Restaurant is a loose term. In the morning it only sells poor quality fried breakfast, which even I usually avoid. It has also recently opened a Subway, which smells even worse than Costa. I have never eaten anything from Subway, but I do wonder how anyone would want to given the smell.
I now understand why I am called a patient. It is not because I am ill, but because the level of patience required is Sisyphusian. Arrive at hospital. Do not plan anything else for the day. Bring a good book. I am currently reading Borderlands, a history of Europe told from the edges, by Lewis Baston. I have always liked borders. They are so much more interesting than the centre of things.
I am here today because this week’s treatment was cancelled because I have a severe skin infection, and it is being checked to see whether I can have treatment next week. It is clearing so I don’t see why not.
The problem with having a week’s delay on treatment with a fortnightly cycle is that it throws out all our plans. We usually plan something for my week off, but now my week off will become my week on. In the past this has meant losing money on holidays, but we have wised up to it and now only book last minute. It is also why any arrangements made with friends may be cancelled at the last minute. Sorry for being so inconvenient people.
My appointment is for 0900 so I dream of being away for 0915. The reality I may be sent for a scan or a blood test, with an appointment this afternoon, or be subject to some other activity which is designed to try the patience of the most patient patient.
Apologies for any spelling mistakes. I am writing this on my phone and I have big thumbs – and a skin infection so be patient.
Dr Nigel Hunt 