CHEMO II DAY 204

Fight, there is nothing else

Friday, its been a bad gut day, just one of those days when all that is upper most in my mind is the state of my gut. Occasionally I get these days, I suspect it is a combination of my medication and muesli. So today I just list what I’ve done between being concerned about my gut.

  • Deleted over 1000 images off my phone
  • Filled in new years wall calendar
  • Took the Christmas decorations down, striped the tree and re-boxed it
  • Collected the next lot of drugs from the chemist
  • Read a letter from a friend.
  • Took delivery of 15K of bird seed and a rat proof storage bin.
  • Watched more Mandalorian and binge watched Fool Me Once on Netflix.

I finally get to the end of the day, take my meds and go to bed with a growling gut knowing that I am heading towards Jab Monday. This is not a good place to be right now, so I hope for sleep and a settled gut in the morning. Not too much to ask is it?

Sometimes you just have an off day.

CHEMO II DAY 203

Fight, be grim and grind

Thursday arrives and I am awake early for me. I check my cyber litter and messages and then get up. Before long I am walking down to get a paper and then on to the village café for breakfast. I settle down and tuck into to both the crosswords and the breakfast. Its a treat for me and I sit in the window and watch my village as I listen to the various people who pop into the café for their cobs and take away breakfast boxes. Once I have finished the crosswords I meander home and take my vitals before getting my vitals spreadsheet up to date. Having got up to date I start the work on my second poetry collection in anticipation of the first one going to plan. It is my Hotels and Restaurants collection, which have to admit has its darker moments and some quite acidic times. I clearly did not think much of Hull or Middlesbrough but I doubt anyone is going to read them anyway. This is after all is vanity poetry. While I am doing this my two new baseball caps arrive. These are the result of a conversation in which my partner said she never knew when I was available for a conversation or not. Jokingly she suggested I should have hats that told her when I am available. Well I’ve taken her at her word and today they arrived. So now I can be undisturbed or available as I like.

Einstein requested that his first wife stopped talking to him if he requested it. This was one amongst many conditions that were made as his relationship with his first wife fell apart. Clearly Einstein was a real bastard but I think it is helpful to let people know if you are “in” or “out”. I like to think my hats are more like Granny Weatherwax’s notice of “I ain’t dead” which she displayed when she was off possessing animals. She always had trouble retuning from bees as it left her head in a buzzing condition when she retuned fully to herself. I clearly have times when I am “out” when I am writing or trying to think through things in my head, or just following an idea or fantasy. My partner likes them so we will see how they work. I sit drafting the blog wearing “I am out” of course. I’ve no doubt that should a real crisis arrive my “I Am Out” state will be overridden. Note the colour coding, red and green, the closest I could get to having a traffic light implanted in my forehead. So much done and its only 13:50 .

I return to my poetry and begin to work on my Herod’s Children collection. A small collection, but everyone of them has been rejected for publication or competition. So I am going to publish my failures as an act of defiance to the poetry industry and a true piece of vanity publishing. I would not mind being the Florence Foster Jenkins (born Narcissa Florence Foster) of vanity poetry. Unlike her I would understand the mockery, she was by all accounts well named as Narcissa, although many think she knew exactly what she was doing. Apparently she trained in opera and thought that smoking, booze and debauchery ruined her voice. They flocked to Carnegie Hall to hear her. Two days after Carnegie Hall she had a heart attack and died two months later. That bit I do not intend to copy.

I finish what I am doing and find myself up stairs with my training kit bag open in front of me. Instinctively I pull on some gear, plug my ear buds in and head for the garage, with the the words of the oncologist ringing in my ears, “once you stop its difficult to start again” and ” exercise is the best way to counter the drug side effects”. Once in the garage note the rower display is blank. Its a heart sink moment, I really can’t be arsed to be pissing around with batteries and a screw driver. Muttering “FFS” I slap the display and miraculously springs into life, it clearly realises I’m in no mood to be buggered about. I strap in, set the controls and fitness tracker for 30 minutes and get going. Christ this is hard work is my over whelming feeling, everything bloody hurts and it takes me a while to get into a rhythm but I keep going. I make it to the end of the thirty minutes and I also make 6 kilometres! This is a big surprise.

This is a result, 6+K and almost 400 calories.

I get back to the warmth of the lounge and record the session in my journal. I count back to the last time I trained and I am shocked to find it is 48 days. Not since the 16th of November have I trained. In fairness to me there has been a lot of crap happen in that time but I am taken aback by the time. Its little wonder that this session was so much hard work and makes getting to 6+ kilometres a good out come. I am so delighted to have come through this session that I am inclined to have a 0% Captain Morgan’s spiced rum and coke and a wedge of Pantone. What a find Captain Morgan’s 0% rum is, I can rum and coke to my hearts content and as it is on offer at £10 a bottle at Tesco its an affordable indulgence.

Time to change and transition into the evening, where hopefully we shall eat and find something to entertain me as I am out of spoons now. I expect the Americans doing stuff on my book (just cannot get over that) may send stuff over in the night as they are at least eight hours behind us, so I might get a late email with material to review. For today having trained will have to do me. Tomorrow I need to follow up with more rowing. Go me. Friends tell me that schools are still out, which feels appropriately Christmassy and something to celebrate, school did nothing for me as a dyslexic in the 50’s and 60’s. I was up the back plating raffia while the normals did real school work and learning. Yorkshire education authority did not recognise dyslexia as a thing in those days , typically bloody minded, ignorant and tight fisted Yorkshire. Today I would have been labelled neuro divergent and provided with all sorts of techno goodies and green gel sheets. However here I am with a blog. Go me again.

CHEMO II DAY 202

Fight, stand alone and just fight

Welcome to Wednesday the third of January and the first day of Cycle 8 of chemotherapy II. Not a catchy tittle but it does what it says on the can. I woke to a day where I had nothing in the diary, a good day to get a grip and start up properly. My partner brought me coffee and we mused over whether or not the bin men would take the huge additional box of cardboard I put out last night. My first task is to play “get a doctors appointment”. This is of course familiar to everyone now. Ring and get engaged for at least ten minutes. Ring and get through but put on hold for ten minutes. Eventually the cheery person at the other end books you in. Fortunately for me this bit always goes smoothly as I am booking my next jab Monday. I usually get an early morning one but this time it at 4 o’clock in the afternoon. This is a bit of a bugger as it means my “withdrawing addict post jab symptoms” will not kick in until the night, which is never good as it coincides with my chemo meds effects. In the end I get up slowly and head for the kitchen where I load up the sultana jars and prepare muesli for the first time in ages. With muesli and hot water in hand I sit on the sofa just as the bin men arrive. I see them inspect the additional huge box of paper and carboard and sigh with relief as they toss it in to the lorry. Hurray I think inwardly. Now for my muesli.

It is strange how life can turn from mild elation to one of “Of for fuck sake”. Three mouthfuls of muesli into breakfast and my temporary crown comes off in my mouth. I blaspheme profusely and reach for my phone. So I go through the same routine as I went through with the doctor less than forty minutes ago. I explain my predicament and to my surprise the receptionist finds me an appointment in fifteen minutes. I quickly dress for the outside world, swill my mouth with mouthwash and head out with my detached crown in a clean envelope. Its not long before I am handing my envelop and disgraced crown to the dentist who gives me an “Oh dear, muesli is soft” and then tells me she is putting on a different type of temporary crown. In a trice I am on my back and bespectacled with the yellow shields and she gets to work on me in double quick time. With my orders not to eat for two hours and to keep mini brushing the gaps ( I hate those damn things) I leave free of charge and buy a paper on my way home.

The crosswords are tricky, or so I think, but I just have a slow start and I am soon giving myself ticks for completing my usual puzzles. As my partner prepares to go to see her mother with her brother I get organised to go to the Shed for the first time this year. The Shed feels damp and so I put the heater on full blast and light my scented candles as I settle into write my first letter of the year. I am distressed to find that my new writing paper will not take real ink. As I write the ink slowly blurs and looks like the smudged handwriting of a school boy, the gorilla of 4B to be precise. That young boy who is ferally mucky and disruptive who gives not a fig for tidy anything. I change to a conventional rollerball and proceed. There I sit trying to write my first letter of the year and it is sticky, sometimes the flow is not there or difficult to get going but I persevere to the point that my seal ring and wax are required. On my way back to the house to get my seal rings I am surprised by the first snowdrop. In all this miserable wet weather it is a most welcome sight and lifts me.

Like a tiny light bulb it announces another Spring is close.

I complete my letter and pack up the Shed for today, but not before filing the squirrel feeder and discovering that rats or mice have chewed through the bird food storage box. The plastic box is wrecked and so I order a metal replacement, they will have to forage elsewhere. I also drain the top two sections of the water butt to ensure it can cope with more rain. Jobs done, Shed packed, I return to the house and then take a brief walk to the Post Office to send my letter on its way. By now I am hungry as I have not eaten since seeing the dentist earlier. I make coffee and cut myself a piece of panettone to eat while I draft the blog.

The evening comes around and I am feeling tired already so I suspect I shall eat and watch some television whilst putting new laces in my blue boots. Of course there are the first tablets of Cycle 8 of Chemo II to be taken before bed and then hopefully a peaceful nights sleep to be had. Tomorrow is another day with nothing in the diary but it could turn out to be as eventful as today, although I might get a head start on putting the Christmas decorations away and finding somewhere to store the new artificial tree. To my surprise before I get to go to bed the 2 format examples of the propose poetry book comes through. I review them and send my preference to what I am convinced is a chat bot or some sort of AI, but I do not care as it appears that progress is being made. As its all happening in America there is a time lag so I expect I shall wake up to more emails from my “project team”. Fairly soon my first concrete steps towards being England’s foremost vanity poet will be made.

Life is a pantomime old chum. Oh no it isn’t. Oh yes it might be

CHEMO II DAY 201

Fight and continue to do so no matter what.

Tuesday the 2nd of January, the 15th anniversary of my mothers death. I do not think about it often but having spent most of last year surrounded by the family documents and creating a family tree I guess such stuff is rolling around in the background of my mind. I certainly remember the visits to the hospital with my sister and the some of the aftermath, although in reality my sister dealt with much of that. It was the last time that a substantial number of my relatives were alive and fit enough to attend the funeral and the post event drinks back at the house. My recall is probably sketchy but I do remember thinking that the family was full of odd folk who seemed to lack social skills, I think it is a major trait of that side of my family. Any way I woke up with these thoughts in my head until I remembered that I was going to the dentist at 10:30am to have work done for a crown.

So I went into healthcare mode, shower (must never be smelly for a doctor or a dentist), light breakfast with morning meds followed by what I always hope is a redeeming long cleaning of the teeth. Its pissing with rain and I realise that the current stock of footwear that I have in the porch is not suitable for the weather. I rummage in a storage cupboard and emerge with my blue boots. I’ve had these a while but not worn them too often but now they come to my rescue. I order new laces for them as I think I’m going to be wearing them a lot this winter and spring judging by the forecast. The rain is very heavy so once again I resort to my old prison service parka, built to keep out a raging torrent and enough pockets to keep all the paraphernalia of the job dry. So encased in waterproof wear I march down to the street to the dentists but before ensuring that my son in Sweden is able to pick up the last of the delayed Christmas present for my granddaughter.

Dry feet guaranteed

I arrive promptly on the dot of 10:30 and I am in the chair very quickly. I’m having a crown on a big back molar. Mercifully I am injected with the magic potion to make half my mouth numb and once I am impervious to pain the work begins. My mouth becomes an excavation site, I am drilled, plugged, drilled some more, once again rough drilled and have a trough of putty stuck in my mouth before I am once more drilled. I’ve got an entire building site of equipment in my mouth at times. Having been demolished down to pure virgin tooth I am reconstructed until finally my excellent dentist matches me up for colour and prepares a temporary crown. She also uses a scanner to send off data so that the lab can 3D print my final crown. (That bit is really cool, the rest isn’t so much). My temporary crown gets fitted and I receive instruction on how to look after it till the real one arrives and we book a date to do that. I went in at 10:30 and walked out at 12:00pm. Its been a solid hour and a half of jaw aching dentistry. I pass reception paying a deposit on my crown and wander home in the unrelenting rain. That has been a long morning and I quietly wait for the feeling in my mouth to return and the ache in my jaw to stop.

Once home I move the car off the drive so that Tesco can deliver and then draft the blog while waiting till I feel safe to drink tomato soup with out ending up looking like an over indulgent vampire who has rushed his meal. As the feeling in my mouth returns so does my appetite.

I lunch and then spend an afternoon looking over some proposals to change our drive way and patio. There is a message from HMRC which I check out to find that they have yet to process my payment so they are still sending me emails telling me I owe them. The evening draws in and after a tea we settle down to binge watch the second series of Tourist until I can take no more and put the bins out, down my night meds and go to bed. My jaw aches from the days dentist adventure, tomorrow my diary is empty so I am hoping to get back to simple things like reading, writing a letter and rowing.

Looking through the rain to see the ocean.

CHEMO II DAY 200 (NEW YEARS DAY 2024)

Fight, bank holidays included.

Monday 1st of January 2024, New Years day and after Hootenanying last night I wake up late. I throw on my Santa blanket and join my partner downstairs who is well into this years jigsaw. We have toast and coffee as we tease away at the tricky Wentworth puzzle. The pair of us nibble away at the puzzle and are joined by our eldest daughter towards the conclusion. Finally we are there, except there is a piece missing. All of us search diligently for it but it appears lost. We repeat our search and miraculously it appears in a place under the jigsaw board where we thought we had already looked. Triumphantly my partner place the last piece to complete the puzzle. It is another stunning puzzle from Wentworth who include “whimsys” and strange shape cuttings in their jigsaws.

Parc Guell, Barcelona.

Having finished the puzzle I went to get dressed determined to be active today. I suddenly felt breathless and tight in the chest. I retreated to bed, took my vitals and there I stayed for the next three hours monitoring my vitals. My blood pressure had spiked as had my heart rate. I repeated my vitals frequently until I had evened out. While laying there between measurements I listened to meditation music and the the Madonna top fifty songs on Radio 2. By 4 o’clock I had evened out and felt ok about getting up again to draft the blog and think about the evening to come.

13:00 was a bit scary but I slowly recovered some balance.

I do not know why I spiked like I did today. It could be a combination of several things, the chemotherapy’s biggest side effect of concern is raised blood pressure so it might have been that. I finally decided that I was fine to get up and re-joined my family in time to do todays crosswords and begin to draft the blog. I note that it is raining yet again and the weather bleak so I am looking forward to watching the televised film of the ballet Beaky Blinders, the Redemption of Thomas Shelby. It is the ballet that I was too ill to go and see in Birmingham last year, when my partner and eldest daughter went to see it. So there is a treat in store for me tonight before night meds and hopefully a good nights sleep.

This is not the way I intended to start the new year, but it is as it is. All I can do is fight on, tomorrow I go to the dentist and hopefully reacquaint myself with the rowing machine and a Tesco delivery. Right now a healthy mundane life will do me and time to get my poetry book done.

Being kind to yourself helps.

CHEM II DAYS 198 & 199

Fight, fight again and again

Saturday and the last week end of the year 2023 dawns. I wake and I feel rough, I’m not sure why I just do and that’s never a good way to start. Its a wet and miserable day again and I do not fancy it. After some initial chores and tidying I retreat to the sofa and what turns out to be a log Tv day crammed with football and rugby. I nibble food while I watch and my partner goes of to have her hair done and return. Game follows game until a take away evening meal, which heralds a binge watch of the Diplomat. As the day goes on I begin to feel a bit better and finally end my day with Tina Turner in concert, my night meds and bed.

Its days like this that are hard to take. With the best will in the world I was not good for anything. Its the sort of day your average self respecting Troll would accuse me of gutlessness, of lacking moral fibre and of being a quitter. Its difficult to explain, in fact I find it impossible, my only response is to take paracetamol in hope of a lift adn to try sleep well at the end of the day and hope for a better tomorrow.

Sunday New Years Eve. I’ll be buggered if I’m having another day like yesterday. My partner brings coffee and we reflect on the year we have had. The first thought is that it has been crap, my sisters death and the consequent all consuming life admin that went with it, my cancer not being amenable to radio therapy and the new bouts of chemotherapy to start with. More recently the issues around my partner being able to find emergency care for her mother has been a challenge as was having the injured carer stay with us before she could return to Greece. There were of course the usual perturbations of home ownership like a boiler that failed, appliances that died, and the minor irritations of broken gadgets and chattels. Neither of us escaped the year with out other injuries, aches and pains and neither of us are as we want to be. Having recounted to ourselves the downs and challenges of the year we of course noted that this was the year our newest grandson was born and our youngest daughter became a mother safely and that my son and his family, including two other grandchildren are all alive and well in Sweden. These are priceless gifts. We have many things working in our favour, like not having debt and being able to contemplate making the house good for future us. We also have friends that care about us, with whom we can share things. Having had our brief reflection on the year we decide to have breakfast out.

Of course before I get ready to go out I weight myself, it being a Sunday and the last of the year. I have not trained since the 16th of November, it slips by easily, and I have comfort eaten over Christmas, as a result the scales tip at a massive 99.5 kilos. Yep I have crossed my threshold of totally unacceptable. It is clear I need to train and stop the sweet stuff, tomorrow of course as I have one day of this year left. I drive my partner to the garden centre with the best café, and we indulge in a proper full English gardeners breakfast accompanied by warming hot chocolate. Its a pleasant morning spent chatting and continuing our planning of for 2024. Venice is the aim for my partner’s sixty fifth but as always there is my cancer to be worked around. We return home and walk to the village shop. All I want is a bottle of coke so I can see the new year in with a non alcohol rum and Coke. Its a simple wish.

Home and into my loungers I watch my home town rugby team win and then start to draft this end of year blog as Zulu plays in the background. So the last evening of the year begins. There will be food, last minute indulgences, messages of happy New Year and then night meds before bed. The New Year will arrive in the morning and for me that means getting back to the fight. Denial, exercise and reclaiming my place in the world and of course becoming England’s foremost vanity poet. Hootenanny!

Happy New Years eat the fatigue and live

CHEMO II DAY 197

Fight, end of year in sight, so fight harder.

Friday and its a slow wake up. In fact it takes two coffees to get me going. While I come round I check my messages, emails and cyber litter. I order my next batch of drugs and do a bit of life admin. By the time I swing my legs over the edge of the bed I am well organised. Breakfast is taken with my partner and then I set about checking the Shed to see if it has survived the work done on it at the week end. Some stuff had moved around but the most of all the back wall was damp. I set the heater going and then gathered up my tools and the newly delivered leak paint. For the next couple of hours I painted, patched and repainted all the possible leak points on the Shed as the heater inside dried the back wall. Eventually I am done and also out of leak paint so I put away the tools and clean up, leaving the heater to carry on drying the Shed out.

By now I am low on spoons and take a rest, which turns out to be a wrestle with one of my so called smart speakers. After buggering around with it and the associated App I admit defeat and unplug it. When I plug it back in after thirty seconds it works perfectly. Note to self, stop the clever stuff and just turn the bloody thing off and on again. I do my vitals while Alexa provides meditation music. My arithmetic is good. After a suitable moment of rest I am back around the table for a dish of soup with my partner. We talk about how it can be tricky to know when I am “available” and when I have gone “walk about in my head”. Laughingly my partner suggests I should have different coloured hats or different types of hat to let her know. This is a genius idea, or so I think. I go to my source of choice, dear old Amazon, and lo and behold, its possible to get personalise baseball caps. In a trice I order an “ I am in” and an “I am out”, baseball caps. I’m interested to see if this really works. I then get on with some clearing up. It is now pouring with rain as I brave the garden again to close the Shed up and turn the heater off. I’m rapidly becoming spoonless and retreat to the sofa to start the blog.

Suddenly I find I am already into the evening and I’ve caught up with the Vera Christmas special and anticipating a possible rugby match. There will be tea and then the world is my mollusc. Its Friday, the last Friday of of 2023. There is nothing special for the end of years for me now, every day is a gain and everyday is an opportunity to change something if I want to. The New Year as a starting point feels like magical thinking and as such unlikely to succeed.

Onion and my brain. Its all about layers

CHEMO II DAYS 195 & 196

Fight, Christmas over so lets get on with the slaughter.

Wednesday, I’m up early so I can wave farewell to my youngest daughter and her partner and of course my newest grandson. Its a miracle that they can pack everything into their car for the journey, but they do manage it and drive off early just as it begins to teem with rain. So after breakfast I set about integrating my new Christmas clothes into my wardrobe. An eclectic collection some of which are below.

By the end of the day the house is more or less sorted, the meters are read, the bins in and the comes along with football and more Mandalorian. Of course there are night meds and a kitchen to clear and then off to sleep.

Thursday rocks up and my partner and I have a plan, new mattress. So fortified by a bacon sandwich we drive off to our local retail park in search of a well researched super king sized orthopaedically firm dual zip mattress. I drive to the runup to the retail park and find its backed up for ever. We drive past and go to a garden centre and have hot drinks and cakes, taking the opportunity to have a long chat and a plan for the new year. Back home the afternoon is well on and so I settle down at the computer and do my tax return for 2022/3. It goes amazingly well and is the last one I will need to do as I had the joy of proudly typing into the “any other information” box the wonderful phrase ” I am pension dependant”. It was almost a pleasure to pay off the meagre tax required.

I skip in to my evening of Bambi, Buffy Vampire the Slayer and Dawn French’s one person show Dawn French is a Twat. They provide a background as I draft the blog and hang my washing up to dry. Night meds and clearing the kitchen comes last, too last for more Mandalorian. It appears that the world has slowed down all of a sudden, but I think its about the shit weather we are having at the moment, all I want to do is hunker down and be warm and comfortable, but I feel the niggle of missing training beginning to itch.

Handy tip for parents every where.

CHEMO II DAYS 193 (XMAS) & 194 (BOXING DAY)

Rocket still in Christmas mode, quietly fighting.

Monday and its Christmas day. Its a day of wrapping paper, surprises and indulgence. Having a baby in the house for his first Christmas is a delight and means everything gets done slower and in phases as he needs food and naps. So it is a lazy start and a late Christmas dinner as we open presents over the day. Here are some of the moments:

I play Santa

We dine heartedly and of course play the detective game that came with the crackers. I strange mixture of party games and detective skills. Only one of us got the perpetrator right, not me, so my forensic skills are lost and gone for ever. One up side was the 0% spiced rum I was given that meant I could drink rum and coke to my hearts delight with no fear for my kidneys. Given that the economy is harsh at the moment and the family all thought they had been frugal by the end of the day we all seemed to have piles of new goodies. Of course the baby grandson had most which meant that we adults had lots of new things to play with.

Christmas evening we nibbled and watched a film and then some TV. I do no t know how it happened but we manged to end up watching the Christmas edition of Eastenders between films. What a bizarre experience, six of the leading female roles end up murdering two men in quick succession in the pub after a wedding jilting and a failed lesbian elopement. Is this meant to inspire strength and solidarity in the sorority or is it an ironic warning to men to watch themselves. Of course I’m unaware of the back story not being an avid watcher but it seems strange fare for Christmas night viewing. It seems a desperate throw of the dice for Christmas ratings. It was a relief to end the evening with a couple of episodes of the Mandelorian. It almost seemed more plausible than Eastenders. So with baby Yoda being safely escorted by a bounty hunter across the universe I take my night meds, sort out the dishwasher and go to bed still wearing my Barbie T shirt and 67’s ice hockey jersey.

Boxing day, Tuesday, and my partner brings me a coffee to wake me and fairly soon I can hear my newest grandson having a bath with his mum. I get up and join the family for breakfast where we half plan and half chat. There is time to put more of the young boys toys together and introduce him to things he can kick, tug and grasp. All of them seem to be a hit with him. By lunch time its time for me to clear the kitchen and to put our special china service away, before I start to make the evening curry. No prizes for guessing what it is, yep turkey curry. I chop and prepare the ingredients and load the crockpot before stripping the turkey carcass of meat and add it to the pot. Finally I add the magic curry mixture, close the lid and set the control so that we can eat about six o’clock this evening. My efforts have tired me, its clearly one of my days with few spoons so I take myself off to take my vitals and to get Alexa to play me meditation sounds. I spend quite a lot of time letting myself relaxing before I get up again to find my youngest daughter and partner have taken my new grandson out for a walk. My first thought is an alcohol less rum and coke and a catch up on the blog. Of course there have been a lot of Christmas messages to send and to respond to. People have all been generous and kind this Christmas and I am more appreciative than ever that this has been the case.

As evening approaches mysteriously poppadum’s and nans appear so the local co-op must be open and someone must have slipped out to get them. I hope my curry lives up to them. I’ve no idea how we will entertain ourselves tonight, although we tend to be a family of game players, one of our favourites being Perudo, and old dice game where you have to predict the number of numbers thrown. Along the way you lose dice if you get it wrong, last person left with dices is the winner. Its an old game, having been played for centuries. Other of of our games are more modern board games. I suspect we will get to television at some point for Murder in Paradise, after that its anyone’s guess. Of course there are still chores to do, so the bins get put out and the kitchen cleared. By the time I’ve eaten I need to rest but find the Royal Institute Lecture on AI, The Truth About AI.

In the midst of this I am conscious of managing my own disease, the hot flushes, my drops in temperature, my fluctuations in appetite and my increasingly unpredictable gut. I try to hold onto my routines and my external “skeleton” of rituals to keep things under control, but mainly its about being able to rest and manage the fatigue. I seem to have sudden losses of energy (spoonlessness) and more recently bouts of anxiety that I exhibit as holding a lot of tension in my body, especially my jaw, neck, shoulders and back. I need to get back to the rowing machine, I must make the effort for my own sake. The garage is cold, perhaps the best step is to get back to the gym, do less but in the warm. This all seems strange stuff for Boxing Day but I think it is part of the incessant nature of the disease and how it invades my thinking as well as my body. It seems it and I cannot leave each other alone.

The clocks by which I know my time.

CHEM II DAY 192

This is as Christmassy as Rocket gets. Want a fight?

Sunday, Christmas Eve and I can’t be arsed to weight myself. I’ve not trained for ages and there is little point in weighing myself. I wake to find I have a Christmas Eve present, as has my partner. After a coffee my partner and I don our presents and pose for a picture with our youngest elf grandson. Its one I shall treasure.

A rare picture of me and partner with an elf

After a brief breakfast, I shower and get ready to go to the family four generation afternoon. Unfortunately one of my nieces has to work, one niece is ill and one nephew is down with COVID, the rest of us spend time chatting, sipping coffee and trying to get i-player onto a smart TV from an i-phone. We failed but it replaced a round of Perudo or other Christmas games.

We stay and chat and then we drive home to more coffee and chocolate biscuits before tea. Everyone is tired, it feels like a busy day and I am already spoonless, The efforts of yesterday have caught up with me and so as tea cooks I draft the blog and ready myself for the evening. Its blowing hard outside and as a family we hunker down. I do not know how we will spend this evening but it will end with me taking my meds and hoping that I sleep well and wake up with many Christmas spoons,. Of course I hope Santa is kind and that we have a peaceful day and the joy of presents and celebration. For me I am just pleased to be here and to be able to be with my family and to be able to wish all my friends and loved ones a Merry Christmas.

To all of you, the best Christmas ever.