I’m lying on a red settee which has a set of 5 inch blocks under it to raise it to a level from which I can get up without calling for one of my sons’ help. I’ve got a sheet over me, my feet are very cold, and my nails are turning back on themselves which I’ve just been told is perfectly normal but has never been the case before with mine. Everyday is pretty much like every other day; I spend a good part of it in my bed, which is fortunately extremely comfortable – much more comfortable than the hospital bed which I have to spend a certain amount of time in, in order to get washed and have my external plumbing modified. 

I may have talked about this before, but the act of being washed in bed after imagining it to be embarrassing and potentially humiliating is actually rather beautiful and I long for my care workers who are lovely people to take longer doing it. However, today we had a bath lift delivered so it’s possible that I will have my first bath, or shower, for 2 months. Can’t say I’m looking forward because at the moment even the exertion of putting my glasses on appears to need a recovery period. So the thought of a bath and all accompanying movement/towling/drying/washing hair/etc seems very unlikely. 

I’m not looking back at these blog posts and I’m dictating them to Arthur so inevitably I will repeat myself. One of the greater losses, sadly, is there is absolutely no food of any kind that I can consume other than space food. One flavour of banana stuff mixed with milk and ice cream given to me about 5 times a day like medicine. Each time I struggle to get it down without gagging. So sadly some of the most ordinary unambitious aspects of life – walking, eating, drinking, going to the toilet – are becoming quite difficult. However, because of the quality and generosity of love that I am surrounded by I can find pleasure in head-scratches, bits of creative dictation such as this, a few TV programmes, readings (nearly always of my own work), and just feeling part of something positive and forward looking. 

Thank you all very much, and I really mean this, for not bombarding us with too much – such that it becomes indigestible and something of a labour to keep saying ‘no, thank you we really don’t need visitors!’

As I dictate this I’m concerned that it may come across as gloomy and a bit self-indulgent, but I reassure everyone that I’m not gloomy, I have just been left without any of the means I’ve had in the past of functioning in a more positive forward looking way. I can only compare it to being completely empty of fuel but needing to go to the petrol station in order to keep going. 

I’m dictating this to Arthur who continues to occupy the Eric Fenby role. What a shame that I don’t have some early 20th century pastoral melodies to communicate to him, instead I will try to appease my guilt at the scarcity of communication with all my dear friends and family. 

It’s not that I don’t want you to visit, it’s that I really don’t want you to visit. And the reason is pathetic. For me to communicate effectively with someone for even a minute or so is exhausting and really unrewarding. Apparently this is not unusual in cases of cancer, in fact for those of you thinking that dying of cancer is about enduring pain it seems this is not the mainstream path off the planet. Instead it’s a painless sapping away of strength (at least that’s what I hope). 

I’ve decided to continue to be in what I hope was the spirit of the blog: brutally honest. So let me describe an average day – I can be fairly confident this is average because they are all very similar. 

Like Dad’s much prized gargoyles at the Guildhall, I wake up with the grumpiest face imaginable. I seem to be unable to twist my face into a smile, achieving at best a grim grimace. That is unimpeded by my front set of crowns that fell away before all this kicked off, so I look like a ummm I look like farmer bean from fantastic mr fox, designed to scare children to death. 

This demeanour is pretty well permanent all day, broken by some occasional nudging to find something smile-making that just occasionally hits the spot. The five people that surround me with love must grow so weary of this behuddled figure wrapped in blankets in what appears to be eternal misery. 

But there is a light shining, this appearance is much worse than its reality. I look dreadful but much of the time, when not under any pressure to exhibit positivity, I feel quite at ease, something I haven’t been able to communicate effectively to my beloved five who must believe me to be in permanent existential hell. The truth is I just look that way. 

Hence that is why I don’t want to see anyone – it’s certainly not I don’t love you all or care about your feelings, it’s just that I think you will go away with the impression that I am suffering much more than I really am. I was going to talk about the rest of the day but nothing much changes. I do battle with six small doses of Complan banana flavour, which are accompanied by six dips toward a reconstituted cardboard sick bowl. I’m encouraged to drink quite large amounts of liquid, I like lime cordial because bizarrely water tastes salty, other than that nothing edible or drinkable is currently getting past the cardboard gatekeeper. I watch a little TV. However undemanding the TV is I seem to find it demanding and can only concentrate for a short while. I don’t read more than a few headlines for reasons already stated, perhaps saddest of all my devoted ginger cat does not get the attention he craves as he makes me too hot.

The care team and the nurses are really doing their very best to see if they can break through the food, nausea, mood, sleep impasse, and I haven’t given up hope. So you never know I may be hosting a bumper party yet. But meanwhile I hope this puts your mind at rest that you’re not hated and abandoned just simply too tiring to contemplate having around. As ever I want to round off by saying if it wasn’t for my five, you wouldn’t be receiving this because I would have packed my bags and long since gone. I’m not strong, I’m not a cheeky chappie, I’m not funny, clever or philosophical – but thankfully I am loved (Maria just whispered ‘are you sure about that?’). 

Dearest everybody

I should start by saying there is some joyous news to be shared at the appropriate time, by the appropriate people, you will have to wait and see. For once it’s nothing to do with me or being ill, thank goodness.

I’m writing this sitting on the loggia, in bright sunshine, dictating to Arthur. I feel an awful lot like Delius in Ken Russells amazing film about the last few months of Delius’ life during which time he had Eric Fenby (coincidentally associated with Eyensford) as his amanuensis. At the time Delius was suffering from the end results of syphalis and was completely blind hence he dictated some of his last music directly to Fenby. If I can find the film on Netflix (highly unlikely) I might give it a watch. Cheery material eh? 

I’m writing to everybody to try and explain what’s happened to me. The Chris you knew prior to sepsis has effectively taken a holiday and the new Chris is not one I’m proud to be. The most significant change is my body craves 100% attention, day and night. I’m quite simply unable to read, write, think, about anything other than trying to get better. So all the efforts my beloved family make to find things to distract me eg. Why don’t you listen to this, you’ll love this, watch Wimbledon, etc have no effect on this single minded physical craving to focus on getting well. This leads to a somewhat monochrome existence in which I will spend most of my time asleep or nearly asleep, quite literally staring at the walls. Even my beloved ginger cat brings no relief. That said there is one bizzare extra feature to this recovery process; I have become addicted, and I mean addicted, to head rubs or scratches to the point that grandma’s Mason and Pearson hogs hair brush has never had such rigorous treatment. So my poor children and their beloved, and my wife, quite literally no exaggeration here might spend 30 minutes or longer simply massaging my scalp almost to the point of pain. 

Had I been able to plan all this I certainly would have planned it differently. It would have included at least a lot of creative thinking, if not making, but certainly reading and planning. The fact that it doesn’t and I can’t find the switch to turn it on is something I think I will have to resign myself to. 

Suffice to say there is still a tiny part of me that enjoys hearing your news, however chatty it may be, but the effect is partly almost indigestible. Not as indigestible as the Wittgenstein I was so enraptured by pre-sepsis. But I struggle to assimilate it even if it’s read by somebody else. 

Hopefully this has gone some way towards explaining my evaporation during the last few weeks, along with the psychological issues I’m fortunate not to have too many accompanying pain issues, just a complete absence of appetite. I am in fact a textbook example of someone recovering from sepsis. 

Hope the change in tone doesn’t mean I’ve become unrecognisable, but I always wanted in my blogs to tell the absolute truth and to be true to myself. This is me now. Yuck. 

Apologies to all those who have written to me in the last few months and have not heard back. The fact is I have been poorly and I mean *proper poorly* INTENSIVE CARE poorly. Anyway I am feeling better now but there have been consequences. My cancer has gone untreated and like a teenage boy left in charge of the family BMW it is “ripping up the streets”. And so it has come to pass leaving the treatment options at ….

Fill in the blank if you dare – that I have only days weeks or months left to enjoy all the great stuff that you guys have many days, months and years to enjoy. Make sure you do.

All the things you imagine writing in a message like this you can assume are in the section below

……….

so there is no need for me to write them again instead I will tell you what we intend to do in the next number of days.

1. Get fast track discharged

2. ⁠That means we can get 2 careworkers 4 times a day

3. ⁠+ all the gear we need including a hospital bed

4. ⁠Install me in said bed

5. ⁠Decide on next course of action and enjoy

Please don’t contemplate visits and whatnot. I would feel enormous pressure – it may be that during that time I do the odd face-time but I doubt it.

If you feel the need to do something then come the time for memorialisation I would like those of you who feel inclined to make some of your own art/music/poetry etc to go into an online album. Is that a good idea?