Cancer 170

How many emotions and viewpoints can a person hold at one go? I am both optimistic about life and pessimistic. I feel my health is reasonably good and terribly bad. I am in pain and I am not in pain. I look forward to the future and there is no future. Orwell was right in 1984 about holding several views at the same time. I just sneezed and I am expecting my stomach to burst with the hernia, as it pokes out from below my ribs and the hernia belt I wear is not a very good one – the so-called better ones crush the stoma bag and lead to leaks, so which is worse, a growing hernia or a stomach smeared with shit? I would say you get used to these things after two years, but….

Two years. That is not bad. I am very happy I have managed to get to two years post-diagnosis. My next target is another birthday, and that is not far away (27 February, let me know if you need my address for the parcels). I will, if I make it, be 62. Not a great age, but I will look forward to 63, and that would be an achievement because I was born in 1963. Why do numbers equal achievements?

I haven’t blogged for a little while because we have been on holiday in the Netherlands. Not the first place people think of going on holiday but I am restricted. I haven’t managed to brave flying yet (I am working on it), so the Netherlands is a good alternative, especially as I don;t know the place very well. I went to the Airborne Museum in Arnhem – an excellent museum, Utrecht, Leiden, etc. Leiden has led to a commissioned article on the siege of Leiden in 1573-74. I will become a genuine historian.

We got back from the Netherlands last Wednesday. It is now Sunday and we are on holiday again, this time in North Yorkshire, at a very nice country hotel. We have a suite with four rooms and an open fire, and we are looking forward to good food this evening. I have to balance eating and stoma production – except I dont balance it. I just eat and put up with the stoma production. I like food and a little hole in my stomach is not going to stop me.

I am still reading War and Peace. It is 1812 and Napoleon’s army has reached Smolensk.

Back to my optimist/pessimist viewpoints. Even now the optimist generally wins (unlike Napoleon in Russia in 1812). I suppose I can’t help it. Always look on the bright side of life as Monty Python had it. I don’t know about always, but 90% of the time is not too bad. After all, things could be worse. I am not a Gazan or a Sudanese.

Cancer 169

In line with my, admittedly ridiculous, theory that I can’t die while in the middle of reading a book therefore I should focus on reading long books, I have just started War and Peace. I have read it three times, so I know the story pretty well. It is one of my favourite books. Of the Russians Dostoevsky is the cleverer, while Tolstoy is the better story teller.

War and Peace has a ridiculous number of characters, up to 600. The difficulty when first reading any substantive Russian novel (and there are many) is getting to grips with the character names, which are often alien to the British tongue. I am now used to the characters of War and Peace. I know them quite well. Tolstoy is very good on both war and peace. He fought at in the Caucasus and at Sevastopol. I visited the Malakov Redoubt in Sevastopol where Tolstoy fought. It has been preserved, though now it also contains large naval guns from the siege in the 1940s. He used his experiences to highlight the experiences of the ordinary soldiers fighting in Europe from 1805 to 1812. In peace he describes in detail the good and bad relationships between husbands and wives, friends, parents and children and so on. In the 1300 pages of my edition he has plenty of space to provide detailed accounts.

I am only on about page 200 so I am safely alive for a little while yet. Yesterday, visiting the Dutch home of the exiled Kaiser Wilhelm I, I bought Christopher Clark’s account of the history of Prussia – that is a 700 page monster. Any recommendations for long books welcome.

On the other hand I have been having some quite horrid symptoms over the last few days. It may be because I am on a chemo break, or it may be that your god doesn’t recognise the importance of long books, but I have had problems with my stoma, my flaky skin, more tiredness than usual, aching legs, even more broken fingernails than usual, painful fingertips, and all the rest of it. I thought I was the worst I have been but I looked back at a blog from last Christmas when we were in France and found a description of similar symptoms, so perhaps it is taking a chemo break that is the problem. On the other hand, hopefully the symptoms will go away in the next week or two and allow me a brief period of reasonable health before it all starts again in the middle of February.

I am still rubbish at taking painkillers. I know I should probably be having doses several times a day at the moment but I am taking Tramadol perhaps once a week and paracetamol perhaps every third day. I have always been averse to painkillers. As I have said before, pain is there for a reason.

Oh well, back to Bagration, Kutuzov, Prince Andrey, Nikolai Rostov and the rest of them being defeated by the French in 1805. Perhaps they will have better luck in 1812.

Cancer 168

The first overseas trip of the year – well, to The Netherlands. It does involve what is, to me, an epic trip across the North Sea, 6 hours of seaborne hell, with 10 metre waves and the constant threat of being thrown overboard and eaten by sea monsters. Ok, I may exaggerate. I have taken my Kwells and should be able to cope with what other people say is a flat sea.

We are just leaving Harwich, on the Saxon shore, with a view across to Felixstowe, in Anglia, and all its containers from around the world, well China anyway.

We are away for 13 days so my large medical bag is packed full of goodies, from the supply of antibiotics that I self prescribe, through anti-sickness, anti-diarrhoea, and anti-gout tablets, all the various items for my stoma (bags, bags for waste, anti-glue spray, wipes, honey rings to ease the pain) and for my Hickman line (needles, syringes, flushing liquids, bits and pieces), tape for sticking my line to my chest, and spare hernia belts. I have brought lots of extras in case we get stuck in the Netherlands or something doesn’t work. 

Oh yes, I brought some clothes and remembered my passport.

Cancer 167

I don’t know where I was the other day but I heard Don’t Fear the Reaper by Blue Oyster Cult, as far as I know the only song they ever did. I quite like the song. It fits with my usual view of life and death. Unfortunately the other day it didn’t. I had quite an emotional response, to the extent of tears. For a horrible few hours I did fear the reaper. I didn’t want to die (I still don’t but the emotion has gone). I wanted to live, to keep living, to live a normal lifespan, to not miss out on all the things I usually say I won’t miss out on because I am dead.

For those hours emotion ruled and cognition failed. The rational man fell apart.

Fortunately it did ony last a short while. It did get me thinking about how that way of thinking or emoting might be the main way they live their lives. I feel sorry for them. I couldn’t live like that, certainly not for long (I now, I don;t have long anyway…..). much prefer the positive outlook. Enjoy life while it lasts.

The other problem I have been experiencing over the last few days is pain. My stoma, my abdomen, and then some referred pain in my shoulder that presumably arises because I am trying to get comfortable. It is keep me awake at night (nothing new there). I am still hopeless at taking painkillers. I have always avoided them, thinking that pain serves a purpose. I know that I should just take whatever I need but I still want to feel what is going on inside me, particularly the abdomen and my hernia, which I think is going to explode at any point (I know, they don’t explode, but that is what it feels like). I have to control my coughing. The hernia belt is not the best. I regularly buy them cheap on Amazon because I don’t like the NHS ones, which may be better for support, but as I have said before, I get far more stoma leaks wearing them because they press on the bag.

When I cough I put my hand on my abdomen and try to cough gently. It can be difficult as I usually have a lot of phlegm – the constant cold of a failing immune system.

These aches and pains keep me awake at night. While I can manage on five hours, I am generally having less than that. I lie in bed and have pains so I get up and get tired. I lay in yesterday morning until after 9am – and what did I think? Oh, is this the start of the next stage of cancer, just lying around doing nothing? So I got up.

The other thing that happened the other day was that we went to the theatre to see Swan Lake. It was a matinee performance at Buxton because of my tendency to turn into a pumpkin at 9pm. During the break I wanted an ice cream (don’t talk to me about diet, my health care people say I shouldn;’t diet), so I had to walk through crowds. That is not an idea with stoma, hernia belt and Hickman line dangling. I was terrified someone was going to bang into it so I ended up being the aggressive one, not too aggressive I hope, holding my hands and arms across my vulnerable chest and abdomen and not letting anyone near. The ice cream wasn’t worth it. It was from Leeds rather than one of the excellent ice creams we have here in Derbyshire – especially the one from Monyask made with raw milk. So what if it is February?

There are always new experiences with cancer, though I don’t recommend trying it.

We are going on holiday, back to the Netherlands. I have started some new research, not serious research. I have no intention of publishing or doing anything else with it. That career is over. I am looking at the history of the Netherlands in the so-called golden age, in relation to the paintings done in relation to the various wars, the science and the culture of the time. I will be rubbish at the paintings side of things with my colourblindness, but I don’t care. How did I get to my age knowing so little about the Netherlands?

Talking of which, I have let my British Psychological Society membership lapse, so I am no longer Chartered or a Fellow. I have lost lots of letters from my name. I am going to let everything lapse except my Fellowship of the Royal Historical Society. I would rather be a historian than a psychologist. I should have though of that earlier. Never mind.

Cancer 166

I had a short spell of unhappiness yesterday. We have had the kids around for a week or so, eating the wrong foods, talking nonsense, inventing a politically incorrect game that I had better not describe as it involves taking it in turns to choose a country to conquer, with reasons – basically a form of recolonising the world. I really won’t say which countries we chose. It is all right for the others but I have to play these games sober nowadays.

Anyway, the last of them left yesterday. I had spent several days almost forgetting that I have cancer. I did have a bad day while they were around, just the usual post-chemo illness, but it was temporary, a few hours at the most.

After they left I realised that I had to flush my Hickman line. I do it every Thursday, and every day while we have had visitors I have been doing the usual tasks and bearing the usual pains, but yesterday brought back the realisation that I am gradually dying and that I am sick of doing these things. I really didn’t want it. I didn’t want the procedures, I didn’t want the treatment.

Nevertheless, I got out my bags of goodies, loaded the syringes and did what I had to do. It doesn’t help that the line still isn’t working properly. It works for putting materials (chemo, flush) in, but I can’t get anything out (blood). If it stays like this then the next time I need to get bloods someone will have to find a vein. As it took nine attempts across both arms last time I am not looking forward to it. They will need to put in a new line or I might jump off High Tor.

Except I won’t because I am not fit enough to walk to the top.