Cancer 233

It is a few days since I found out that I am headed for the endgame. I am not happy about it. It hasn’t become all right. It is still all wrong. But when I look back, we can split life into three stages, childhood, adulthood, and retirement. The first two have been excellent, but I am not getting the chance to have a good retirement. We were looking forward to a retirement of travel, doing new things, doing old things, just doing things, without the pressures of work.

I am lucky to have had such good versions of two of the three stages of life. In childhood I had woods, a quarry, lawn for football/cricket, a field, some big trees for tree houses, forts, fires, dens, tunnels – all that and more was in my garden (if that is the right word). We fought battles with stones and mud, we fought Germans in WWII. We played football in the winter and cricket in the summer. We cycled for miles. We had a rusting crane yard (thanks Bowmer and Kirkland), ruined houses and factories, everything a normal boy could want from childhood – no internet, no screens, and not too many TV channels.

For most of my adulthood I didn’t have a proper job. I know what a proper job is. I was a bricklayer and a lorry driver. They are proper jobs. Being a university lecturer? That is not a proper job, no matter what some people might argue (usually thosae who had gone straight through school and university into academia). I was largely autonomous. The only real time constraints were turning up to lectures at the right time, standing up for one or two hours in front of young people and talking about subjects you enjoy, perhaps interspersing it with political or other opinions because I felt like it. I had years of being able to influence young people. That is not work.

Research. You choose your own topics for research and get other people (students) to do the work. Not real work. Students came from all over the world. Outside of ‘work’ we had regular walksin the Peak District, and regular monthly lunches. Other staff didn’t do this. I don’t know why, Many didn’t seem interested in the people they were teaching and supervising.

Writing. That is what I always wanted to do, so having written ten books and numerous journal articles I have done what I wanted to do!

Outside of work are the people, the friends and family that have played a huge part in my life. I have been lucky to have a lot of people who care for me and I care for them. It makes a big difference to life.

So what have I to complain about, ‘save the undone years, the hopelessness.’ (come on, work it out. Where did that quotation come from? ). I had such a good childhood and adulthood that I hoped for a good retirement too. Perhaps that is selfish. For me, it is another example of why I don’t want to die.

‘Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage aagainst the dying of the night.’

Cancer 232

It is Endgame. I obtained my latest CT scan results yesterday. A large number of tumours in my abdomen have grown significantly, so this new treatment isn’t working. IT is of course expected, but you never expect sometihng like this just now. We are in a state of shock.

There is going to be a MDT meeting net week to discuss what is going to happen next. They may carry on with this treatment, though it is unlikely as it doesn’t work. There may offer something else, but it will probably be a placebo (though with my powers of positive thinking a placebo could work, he says, desperately clinging to straws). They may offer nothing but blood, toil, tears and sweat, ie painkilling drugs for palliative care. Have another swig of morphine before you die.

So I am not going to renew my taxpayer-bought car, or my cripstick that enables me to park on double yellow lines. I probably won’t finish Robert Service’s 700 page biography of Stalin, which I am reading beause I have always wanted to be a bit of a Stalinist, not the killing of millions or the being a priest part, but the writer, the family man, the destroyer of Nazism, the follower of the arts and the telling people what is best for them parts. We shouldn’t ignore the nuances of a person. Just because Stalin did some questionable things doesn’t make him all bad. OK, you are not convinced, but I don’t have time to publish my next five year plan – I don’t have one – or five.

I am still hoping to finish my History MA, though forget the biography of Sir John Gell, or my next PhD. I won’t finish my full length book on Wingfield Manor, nor publish the one and a half novels sitting on my computer. I won’t see the cats grow old (though with the speed of traffic along here I suspect they won’t grow old). I might even miss the change to the next Prime Minister. OK, that is too extreme. I will never know who will win the next World Cup or the next Ashes series. I won’t find out who won any medals at the Winter Olympics (Oh yes, that is because I never see or read anything about it because it is boring). I have no need to buy any new clothes – not that I ever did without protest – not even replace my worn out socks and slippers. I really cannot justify a new computer, though I keep looking.

The biggest tumour growths are around my stoma and my hernia, though there was a long list. The consultant told me about it over the phone while we were driving through Chatsworth. My next meeting will be face to face in two weeks, when I will get all the details. I remain positive. I remain scornful of any fear of death. I remain fully cognisant that death is the end of everything for me. There are hard parts. I have to think through the idea of missing future events by the knowledge that I won’t exist therefore I won’t miss anything. The feelings attached to that though create difficulties. At the moment I am alive, so I am aware that I am going to miss so many things, some predictable, some not. It is only when I am dead that they don’t matter, and while alive it can be difficult to think of non-existence as a thing.

As I have said many times, it is not fear of death that I have, but fear of dying. As these tumours grow, presumably the pains will grow. As they grow, they are likely to block my critical channels, both input and output. The consultant mentioned a growth in my stomach, which will presumably affect my diet. Last night I couldn’t eat my tea, but that was probably me being weak, thinking of problems ahead rather than problems today.

Again as I have said, Tuesday is my 50th round of chemotherapy. I never thought I would reach 50, and it looks like I won’t reach 51, but it is a target I have been looking forward to for a while. Perhaps not a target that any of us really want to achieve, but in my circumstances you really do.

A temporary advantage of ending chemotherapy will be a temporary end to these feelings of sickness that come with it. I hope to get at least a few weeks of feeling reasonably well. Perhaps we can go on holiday. Unlike last year when I wanted to be away all the time, this year I am not bothered about going anywhere. I am quite happy at home (that shrinkage of the world that happens to dying people). It would be nice to have a last holiday, but where to go? I just can’t drive the distances I used to, I wont fly, and I am definitely not using public transport, so it might mean staying in the UK, perhaps the Lake District, Northumberland or Scotland. The problem is that I cannot plan ahead as I do not know what my state of health is going to be a week or a month from now.

A glass of morphine anyone?

Cancer 231

Here we are again. In a few hours I will have my bloods taken to determine whethere I can have my next cycle of chemotherapy – my 50th cycle. I never expected to get this far. Fifty cycles sounds a lot to me, and it does seem to have gone on forever. When I said I had terminal cancer I think we all expected me to be dead by now. I feel a bit of a fraud in still being alive, as though I didn’t tell the truth about my cancer!

It is getting more difficult though. I have had six (I think) rounds of the new treatment after the previous one failed, and it is much harsher than the last one. Previously I had one or two bad days each fortnight, now I have several. The Tuesday of initial treatment is bad, then I recover a bit, and then I go downhill over the weekend and feel like shit for two or three days. This week I have only been ‘fit’ from yesterday, Wednesday, and hopefully I will be ‘fit’ for the net few days. Until recently, I had my six days of freedom from treatment, but now I don’t. Now I recover for the Wednesday and have to give blood on Thursday and talk to the consultant on Friday, leaving Saturday-Monday ‘free’ before the next round.

How long can this go on? In effect I have a day before bloods, and three days over the weekend, four days out of fourteen where I can be semi-normal. The pressure is building. The bad days are bad. Only a few months ago I could tough out most of the bad days and be fairly normal. Now I end up going to bed and trying to sleep. Sleep? What normal person does that kind of thing?

People still tell me I look well. I don’t. If people are not blind or lying, then they fail to see beneath skin deep. I know they are being nice to me, I know they are telling me that I am cracking on with the fight. I know they mean well. But just inside my skin things are churning, and the pains increase – while I still hate taking pain killers (morphine) I worry less and take more. I do get a bit depressed, and I do get weepy at times (but then so did Churchill, so I am not worried about that).

Last year we were going away all the time. This year I am quite happy at home. We are talking of going to France in a month or two. Whether it will happen or not I don’t know. We are even going to parts of the UK less often. The last couple of trips have been marred by my illness. When we were self-catering I ended up in bed, ill. And as for hotels, I find it difficult keeping to their timetables regarding food, particularly over several days. That means we couldn’s spend time in French hotels as you have to eat at precisely 1230 and 1930 every day, not get a proper breakfast, eat too much cream, and not even have a kettle in the bedroom. Civilisation just passed the French by. Perhaps it was our fault. They have never recovered from Crecy, Poitiers and Agincourt (I won;t mention Castillon).

I know I talk about making a decision to stop treatment, and everyone agrees that decision is mine, but thanks folks, that almost makes it worse – deciding to give up ad die is my own responsibility. Part of me would prefer not to be responsible. Having said that, you can bugger off if you think you are going to tell me when to die. Even given the horribleness of ten days out of fourteen I can’t see myself giving up. The decision is too big. Fancy it? ‘I have just decided to die’. No, I don’t think so. It is most likely the failure of the drugs will determine my death. After all, I still have four days every fortnight.

I plan to continue to defraud you by living for a while yet.

Cancer 230

My apologies. I have just noticed that I claimed 149 rounds of chemo in my last post. Wrong! It is ‘only’ 49, still more than most but it will be a while before I get to 149. I would need to live for another 5 years at least. Ha ha. My last post was written while very tired. I feel the same today. I am in the cancer unit having my drugs pumped into my body as I write. I have just had a bit of a swallow reflex problem, but I managed to avoid being sick or telling the nurses – I just sat very still for a while and didn’t attract attention. Last time it happened I weirdly threw up a lot of thick bubbly phlegm. Unpleasant but not as bad as a full ejection.

I have put weight on again. That is supposedly a good thing when you have cancer, but years of indoctrination by the dietbook-bashers means I am a little uncomfortable with it. I have put on 3 kg.

The problem is that I got up rather early today, around 1230. It is a little early, even for me. I tried going back to bed at 0530 but as my alarm went off at 0600….

This new treatment (I suppose being the 6th round it is not new, it is the length of treatment most people have in total) is still nastier than the previous one. I regularly have a couple of days at the weekend where I feel awful, where I just want to go to bed and die. Ever the optimist I hope that this won’t happen this week, especially as we are out for meals on both Saturday and Sunday.

I am getting on with my History MA. I have a rough structure for the thesis, with a maximum of 25,000 words I have written something over 30,000, but they are not great words. I am going through to create my first full draft. After that I will create another draft that incorporates all the findings and a reasonable discussion. Then I will create a furtehr draft, but which time it should be fit to send to my supervisors. It is slightly unorthodox, writing up the thesis when I don’t have all the results, but it is the way I work, it is the way I can get it finished early, as I do believe it is easier to complete a thesis when one is alive than when one is dead. Anyway, I am anxious to get on with my next PhD. I quite like being a student, though it is a bit of an odd feeling given I have written lots of books and journal articles, and supervised 40 PhD and well over 200 Masters students. I am confused which side of the fence I should be on. The key thing is that I need advice on creating history, which is very different to psychology.

I am also back to writing academic articles, but now as a historian. I have submitted one on a siege in the civil war, and am preparing one on the use of literature in history, focusing on the Battle of Sedan (1870). I have several others planned. I have limited knowledge about which journals to submit to – again I need advice – but I am a little shocked by how low the Impact Factors are for history journals compared to psychology journals, but I suppose historians tend to produce monographs rather than journal articles. It is a different world.

All this is a very slow process. I can’t do a full working day. I can;t work every day. Lioke everything else, it is very tiring. At least I have the motivation. I want to get these things written.

Today is not working too well at the hospital. First I was not registered as having arrived at the unit, so I was brought in an hour or so late, and now, after having my full two hours treatment, I find that one of the drugs has not gone through due to wrong programming – so I have an extra hour to serve. Never mind, these things happen, though not usually twice in a day – I hope it is only twice.

Cancer 229

It has been a while since my last blog. On Tuesday I will be starting my 49th round of chemo, the 6th using this treatment, which means I will presumably be able to take a break when I want to. I don’t want to, though everything has been through my mind in the last couple of weeks, from optimistic hopes regarding longevity to pessimistic horrors regarding givng up treatment and dying. As I have said before, my mood swings go from one extreme to the other. I don’t seem to be able to sit comfortably in the middle with a few gentle swings towards optimism and pessimism.

It doesn’t help that I am constantly terrribly tired. I am not sleeping. Nothing new there, except I am drifting off as I am writing, I am forgetting not only my next sentence, but this one. I am getting an hour’s sleep followed by most of the night awake, and then from c. 0500 I drift back to bed and try to sleep. I usually get another hour or two, adding up to anywhere between 2 and 4 hours a night.

Sorry, I am having to delete and rewrite all this simply because of my tiredness. I was going to write about my recent illness, but I think I will leave it for another time. I can’t stay awake.