Cancer 121
Posted on May 13, 2024 Leave a Comment
Tomorrow we will be home from our latest holiday. I wonder why I haven’t lived in Scotland. The scenery is spectacular, the food is British untainted by the Mediterranean influence so common in the south, the cost of living is lower and the people are friendly and generous. There are downsides of course, tartan, kilts, and bagpipes must ruin the ears and eyes of many people. Nevertheless, if I wasn’t in constant need of the health service I would like to spend a significant part of my retirement in Scotland. I might even learn to sail a boat in the lochs.
The first part of the holiday was tainted a little by illness. Not only was I tired from the long (in modern terms) drive, but the toothache was, literally, a pain. It still is, but I am managing now without painkillers. I just need to avoid cold drinks and ice cream. While here I have been asking for warm – ie not fridge cold) lemonade. I am seen as a bit of an oddity wanting a warm drink. I use the toothache excuse but in reality I rarely enjoy fridge cold drinks. The chill takes the taste away, which is presumably why some people can consume lager and not roll around on the floor in agony. The temperature of white wine, though I don’t drink it now, is a constant refrain. A certain someone thinks that all white wine should be chilled within an inch of its life, whereas the best serving temperature depends on the wine. Cheap wine needs to be chilled – again it is to remove the taste – but something like a Chablis should be served relatively warm. I think I will add the temperature of drinks to my portfolio of annoying cafe, restaurant and pub owners, along with the desire to eat off plates not slates, and for the banning of sticky toffee pudding – among other things, but this is not the place to whinge.
Not only have I cut out painkillers, at least for the moment, I am using less cream on my arms. My skin is managing to repair itself. Instead of the rhinoceros skin I had on both my upper arms due to the dodgy PICC lines, I now have a slightly softer version, albeit pockmarked from over-scratching, which is also true not just for my arms but for most of my body. I try to stop scratching but you know how it is.
Tomorrow we get home from Scotland and then it is almost immediately down to the other end of the country to see family, and then down to Cornwall – yet more long drives, I will probably need a long rest after that, but immediately on returning home I will be having my Hickman Line inserted, ie the line which enters my chest and terminates just outside my heart. Hopefully, it will be more effective than the PICC lines but we will see. I am not looking forward to returning to treatment after a) the disasters of the last few rounds, and b) getting away from it all for a few weeks. Getting away from it all means that in some ways I start to think like a normal person again – until I remember.
My other problems at the moment are aches all over my body. I can find it difficult to get up from a sitting position. It is painful to move my arm backwards. My walking is more restricted that it was even fairly recently. It feels like a decline, a slow breaking down of my body I know, but I can’t help thinking these thoughts. After all, it is happening!
Cancer 120
Posted on May 6, 2024 2 Comments
I have complained about various illnesses and troubles recently. I might as well continue with the theme. I have toothache. At the best of times, toothache is a pain, a severe pain. When added to my list of failing biological systems it is more than a pain. I dread going to the dentist. I am of the era when there was no local anaesthetic for fillings, and so my fear of dentists is very strong. It doesn’t matter that now they are nicer, kinder, and most importantly use anaesthesia – childhood memories dominate.
Still, we are on holiday so I can’t let a little matter like being unable to eat ice cream or drink cold drinks dominate. We are far north in Scotland, in a Manse in a small village by Loch Ewe. For those who are interested, Loch Ewe was one of the bases from which the Arctic Convoys sailed in WWII. While the ships are long gone, there is still concrete evidence of the wartime role the loch played, so we – sorry I – have been exploring various gun platforms, radar sites, heavy and light AA sites, and so on. The loch is still home to a NATO refueling base, though you wouldn’t know it with the apparent lack of security. Don’t tell anyone, we don’t want the wrong people to know about it.
There is also an Arctic Convoy museum. It is fairly new and needs some organisation, but it is full of model ships and aeroplanes, many of which I constructed in my childhood, eg the planes Catalina, Lancaster, Spitfire, Mosquito and Hurricane, and the ships Tirpitz, Hood and Sheffield. It made me want to start purchasing from Airfix again. I wonder if I could make them without getting glue all over the place? I doubt it. I never could. There were lots of stories from men who sailed in the convoys. A rotten job. People whinge now about being upset by ‘hate’ speech (which usually has nothing to do with hate) or whether someone uses the right pronouns (quick guide: if it has a penis or ever had a penis it is he, if it has a vagina or ever had a vagina it is a she). I think our forefathers would be tut-tutting and shaking their heads in dismay.
We have a week here and then a slow three-day journey home. It was about 550 miles from home to here and nowadays that is a long journey. I was very tired on arrival. It is not like the good old days such as driving to Crimea (3,000 miles) in one week or getting from Sarajevo to Thiepval (on the Somme) in 24 hours (1500 miles). And yes, I did all the driving then and I do all the driving now. I don’t think I will be getting to Spain again or do the half-planned trip to Sicily. What? Get a plane? You must be joking. What with my stoma, my hernia, my dodgy heart and my cancer I don’t think any reasonable airline would let me board, even if I wanted to. One of the great advantages of my condition is that I never have to face airports again.
I have just started reading Don Delillo’s Underworld. I enjoyed White Noise. The first chapter is all about US rounders. I didn’t understand a word of it. Has anyone read it? If so, does he stop going on about rounders? I hope so because I like his writing. It is another very long book because as I have said before, I can’t die in the middle of a long book. The trouble is, I am only reading long books….
After this holiday, and then a few days in the South West seeing the kiddies, I will be back to treatment in early June, which means I get fiddled with in the last week of May. I wonder when I can have another treatment break?
Cancer 119
Posted on April 30, 2024 Leave a Comment
It has been a little while since my last blog. It has been a difficult few weeks. Since February there has been several problems. I have had pneumonia, and I have had several infections mainly due to my PICC lines. I have had three PICC lines fitted, one in my left arm and two in my right. The first two somehow managed to slip out, and the third led to a serious infection both at skin level – it was such a gooey mess that dressings wouldn’t hold – and, it turns out, near the heart as an analysis of my final PICC line showed infection at the deep end. Add to this most of the squeezy bottle treatment, where the bottle is attached for two days after the main treatment in the hospital, have failed. That means the fluorouracil has not been in there doing its job. This was the case for 3 out of 5 rounds. Another was cancelled because the PICC line was falling out.
PICC lines are not supposed to go out of position. They are held in place with a fishing hook attached under the skin (it hurts when removed, lots of things about cancer treatment hurt). Having three go wrong in under two months is a little extreme. When the final one was removed it was suggested that I take a break from treatment, which was a damned good idea because I was utterly sick of going into hospital and things going wrong. I can put up with a lot, but I was reaching the end of my tether, so now I have not had any treatment for about four weeks. My arms are recovering from their infections. You don’t understand itchy skin until you have cancer. I itch all over my body, which is suitably covered in rashes, cuts and scratches, and blobs of broken skin. It almost feels that my skin is peeling off, ready to leave muscles (such as they remain), tendons, and so on fully exposed. A skin transplant would be good, please.
In the middle of this, I have been measured up for and received a new belt for my hernia. It is very wide and has a solid plastic bubble to contain the stoma bag, so hopefully it won’t leak. It hasn’t yet, but it is only about day three.
I mentioned hurting and cancer treatment. At the start of the chemotherapy, I could happily put up with most things. I don’t mind people jabbing me with needles – fortunately, as it is a very common occurence. I can take pills without any problem. IT is over time that my resistance breaks down, that and the added discomfort of skin infections and occasional aches and pains with the stoma. In the last few weeks, the skin pain (and an itch is a pain at this scale) has become too much. I even started to dread having injections. I also wanted to avoid the cannula for the CT scan and the X-ray for the PICC line position. I didn’t want to go to the hospital for treatment. My patience was wearing very thin. I hope the break will reset my resilience because a week or two ago there wasn’t much left.
I have avoided mentioning the pain of the surgery and the subsequent weeks. It is better left that way. Forget I said anything.
With the current discussion about assisted dying, while I strongly support it, we do need to be careful about when it is accepted and administered. A week or two ago my mindset was that I am sick of everything, sick of treatment, sick of pain. sick of the idea that it will never get better, only worse, and while I wasn’t quite ready for the assisted dying team to come and finish me off I wasn’t far from it. Now, without treatment and having spent nearly four days without going into hospital – though I have been telephoned by health service staff each day – I am back to being happy as Larry, and ready for our holiday to Scotland in a couple of days.
Holidays. Another mess. I was told I could have three months away from treatment so I booked France and I booked Scotland. Then I was told this wasn’t the case and I am taking a break now, so we have lost quite a bit of money on cancelled holidays; bear in mind that I cannot get travel insurance. Our alternative is a new booking for Scotland. Only a week but it is better than nothing.
On my return from the break, I will be fitted with a Hickman line, which is another plastic tube which enters the top right of my chest and goes through the vein to the edge of the heart. They are harder to fit and remove than a PICC line, so it may affect future breaks (see, my optimism has returned enough to think about future breaks), though I was told that I could be trained to flush the line so I won’t need to be around for the nurse to do it. Don’t tell the nurses, apparently they may not approve. That means that if I can flush the line and change the dressings then there is a chance of getting away for more than the normal maximum of six days.
I seem to be focused on going away. I am not sure why. I live in an area others come to on holiday. I suppose I want to drive and see new places, even if it is just around Britain. There is a lot to see in this country. In the summer when I am back on treatment there will be no holidays, just day trips to interesting places, and lots of barbeques at home.
It isn’t easy having cancer, particularly when it is going to kill you. It is one long battle, with moments of quiet and moments of mental and physical agony. The sufferer needs a constant resupply of ammunition to keep going. Knowing that it is the final battle doesn’t help. Do I want to live in the trenches for months under constant bombardment, or is it better to just surrender? At the start of all this, I was optimistic and happy for the vast majority of the time, 90% plus. As time goes on and my resilience is battered this is inevitably reduced. The last few weeks were shit. The enemy made substantial advances. Fortunately, this appears to be over, and my optimism has returned, at least for the moment.
Cancer 118
Posted on April 23, 2024 Leave a Comment
Today is, or was meant to be, a treatment day, but my PICC line is causing too many problems. There is now the threat of a clot so I need to go for a scan. This may mess up all our holiday plans, as we have booked for the gaps between treatments, and now those gaps may become the treatments and the treatments may become the gaps. I tried bravado to get the treatment but they don’t believe me. My right arm has a 10cm larger circumference than my left arm. I explained that this has always been the case, but again they don’t believe me.
I am getting a little sick of it all (again). My skin itches, not just around the sites of the PICC line entries on both arms, but across my skin generally, my stomach and legs. I take daily drugs, I stick cream on the sore bits of skin, I change my stoma, I sit up at night because I can’t sleep, I come into the hospital far too often for far too long with far too many hours just sitting around waiting. I am very tired. I didn’t really want to come in today. It is getting a bit tedious.
My PICC line has been dressed. It was very messy. It seems I might be allergic to the dressings – all of them. There is also some infection in my arm and with the possibility of a clot there will be no treatment. I may have a Hickman line for the future, which goes in through the upper chest/shoulder and through to the heart. This has to be fitted while being scanned to ensure the line goes to the right place. I don’t suppose they will knock me out while they do it.
I have had blood taken from the PICC line and from my opposite wrist. I am not sure why. My pain threshold seems to be reduced today. The PICC line entry point is sore, and so is my wrist!
I am now just hanging around waiting – for what, I am not sure; probably the PICC line removal – which really hurt last time – and quite possibly the scan if they can fit me in – whatever time that might be.
I know I am thought to be cheerful but today I am in a bad mood. People are irritating me. There was the person behind me in the restaurant on his phone, listening to some drivel. Another person in the waiting room was watching something on his phone. They think by turning it down it is acceptable. It isn’t. I find the quieter noises to be more irritating than the loud ones – except for the bloke in the waiting room who bellowed his every word. I wouldn’t have minded but he talked utter drivel. I know I should have sympathy because he was probably deaf but I don’t. He needed gagging. I need the sympathy today.
I have been in the hospital six hours so far. No end in sight.
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.
Dr Nigel Hunt 