Thursday and I wake after a reasonable nights sleep, but fall back to sleep again. When I do finally wake up its mid morning. I quickly check my cyber stuff, measure my vitals and get up. A simple breakfast and then some gentle puttering. Annoyingly I find I have a headache so I decide on radical self care. I plug in my ear buds and listen to Clive James’s Cultural Amnesia, a book of reflections on the cultural influences on him.

I recline, plug in my buds, put on my I Am Out hat and settle into the pleasure of being read to by the author. And there I stayed, letting myself be educated interrupted only once to eat beans on toast and then return to the listening.

So that’s how I spend my day until I am lured to the world indoor bowling and watch a couple old fat white blokes slog it out over two sets and a tie breaker. Its only a matter of time before some one complains of lack of inclusion, under representation and all the other agendas that are around. It could of course be upgraded to have a wider appeal. Multi coloured balls, heavy music walk on tunes, more adventurous game wear and some bad person behaviour to incite the crowd into partisan chanting and igniting flares. Any way the evening sidles up and I start the blog and look forward to pasta for tea and an evening of bugger all.

I suppose it is a legitimate question to ask if this is a good way to spend a day given my condition. Aught I not be doing something uplifting, making memories or doing something “amazing” with one of my limited stock of days. To be honest I can’t be arsed on some days, have I not made enough memories, done enough to have a day off occasionally? So, today I put down to indulgence in idleness. I will round it off with chemo drugs washed down with an alcohol free rum and coke. I of course have snuck in a couple of things that are not idle like downloading the poems for Saturday’s poetry stanza and acquiring some odds and ends from Amazon.

STOP PRESS: My final draft of the poetry collection has arrived. I know what I will be doing tomorrow now for sure.

Wednesday and I wake to a cold day and appointment with the dentist. There is is time to dress and take my morning meds, check my vitals (still all good) and wrap up warm for the walk to the dentist. To be honest I am not feeling great and I am hoping that I will not be waiting long to get in. While waiting I read some of the poems that have been shared prior to next Saturday’s poetry stanza meeting.

I get called in and greeted by my smiley dentist who looks into my mouth and decides I need an anaesthetic injection. So I sit for what seems no time at all before the dentist is drilling out the temporary cover for my tooth. There follows minutes of cleaning, fitting adn adjusting before the crown is finally glued into position. I make my way to reception where my now numb lips have difficulty forming words, so I silently press the buttons that make the dentist much richer and head off home. On my way home I pick up a paper and soft iced buns.

Once home I settle down to do the crossword puzzles and sip hot water while my lips return to their normal state. Having not eaten I am eager to get lunch time when I can carefully sip soup and dunk bread. I am still not feeling that chipper but I get my washing in and again settle down to write a letter. I do not know if it is a side effect of the meds but it is taking me longer to write letters recently. By the time I am done the washing is ready to be hung up before I wrap myself up warm and go over to the post office to post my letter.

By the time I return and got back to the sofa I am running out of spoons so indulge in watching the world indoor bowls on TV. This is what I am doing when my partner returns from seeing her mother. We slide into he evening with pizza and a light content film. At the end of the fluffy film there is the final throes of a cup match to watch while I draft the blog. With that done I make a small non alcohol rum and coke, take my chemo and go to bed to listen to an audio book. Another day where the mundane masks the dark waters below. Tomorrow is another day.

Tuesday and I wake up from a night of hot flushes and sleeplessness. I take time getting up. Before I do I do all my usual checks of messages and cyber litter. There are a few messages to respond to but but nothing earth shattering. I do my vitals, still good, and then have a simple breakfast. While I nibble my toast I watch the parliamentary committee on the post office scandal. It is a fascinating watch as the CEOs of the Post Office and Fujitsu try to humble their way off the hook and push any explanation on to the complexity of the situation and the fact that it happened a long time ago, as if that was sufficient explanation of them not being able to answer some really basic questions. By the time lunchtime comes round I’ve added more names to the list of people who will be up against the wall come the revolution. During my watching I decide I’m going to re listen to some of my audio books only to discover that I’ve not got a CD player, so I immediately order one from Amazon.

My afternoon finds me in the bath listening to the Infinite Monkey Cage, which means I get engrossed in several episodes as my body becomes increasingly wrinkly. Eventually I get out of the bath, enlightened about spiders and wine amongst other things. I clear the kitchen and send messages to chase my book. Apparently the team are working on it and will send me the next draft in a few days. While doing poetry things I send my contribution to this Saturdays Stanza members. As there are a lot of people attending I have sent my visual poem that is not required to be read it out. That should save time.

My partner finishes work and goes off to her brother’s to sort out some care admin and I set too and make a pie for the evening meal and get my washing away. The evening consists of eating pie, watching football and sipping rum and coke. During the football match the CD player I ordered this morning arrives so of course I spend time discovering how it works and pairing my ear buds with it. Mission accomplished I can now start my re-listening. The evening trails off as I draft the blog and contemplate my dentist appointment tomorrow morning. It should be plain sailing as it is the fitting of the 3D printed crown. It is the passing of reception and paying the bill that will cause me pain. However for now I am full of my chemo meds and off to bed.

Monday rolls round again and after an average nights sleep I rummage through my phone for messages, emails and cyber litter as well as checking my accounts and the news feeds. My partner brings me my morning hot water and I take my vitals. All good there, the arithmetic is holding up. I get myself up and make fried egg sandwiches for breakfast. I try yet another version of herbal tea. The morning is full of life admin as I wrestle with the tax man, and deal with post. Its that time of year when things like insurance renews and I go through the ritual of renewal knowing the bastards will do everything they can not to pay if push comes to shove. Lunchtime arrives and my partner and I nibble cheese on toast followed by the joy of a surprise Tunnock’s Tea Cake.

My afternoon is spent writing letters to relations in Scotland inviting them to add data to the family tree. I add printouts of the tree so far and point out some of the quirks of our family history to date. I make the trip to the post office and hand over my letters and then head for home in the blinding sunshine as it slants in on its winter trajectory. Once home there is recycling to do and then I settle down to read the Velveteen Rabbit. It is ostensibly a child’s book but it has much greater depth as a lot of children’s stories do especially those written in the late Victorian and early Georgian era. This edition has the original art work, which is lovely and very much of its time. It is a short and easy read but is full of ideas and messages that are layered into it. If you have not read it, it is worth the time.

Having read the Velveteen Rabbit I go off to redo my vitals and to have a short listen to some meditation music, before I know it, it is four thirty and time to begin to think about moving the car off the drive for the Tesco delivery. I go out to the car and find it iced already and the temperature below zero so it takes a while to clear its windscreen and get it where I want it. By the time I am in again I am chilled and pull on another layer and have a blast of the heater in the lounge while I draft the blog. During the day I check my emails and WhatsApp in the hope that there is news of how my poetry book is coming along but alas there is nothing. I am impatient to see what the next draft looks like as it should be getting near to the final version. I am quite desperate for it to be acceptable so that I can embark on my next two collections, which I hope will be quicker to produce having got the template from the first one.

Once again the evening slides into view with the prospect of Silent Witness to watch and not much else. It is after all Monday although I notice that our local Desford Heritage Family History Group is having a launch event in two weeks time in the village library on that Monday evening. I am tempted to go, but I do not want to get caught up in the usual village bollocks that goes with these things, but there maybe some useful tips I can pick up. It is always made to look easier than it actually is but there maybe someone there that has already used a software package that would suit my needs. I will see how the weather turns out and if really snows like some are predicting. Back to tonight I need to bathe at some point but I feel my spoons ebb away quickly now as the temperature drops and tiredness begins to kick in. I take my chemo and go off to bed hoping to sleep well this night.

Saturday and its a mission day. Mission to buy a new mattress, neither I or my partner can tolerate the one we have right now so its got to go. The usual cyber checks done, I have breakfast, take my meds and the I am driving my partner to the dreaded retail park.

We park up and head for Dreams the bed shop and are greeted by a an avuncular shop assistant despite the fact that I am clearly double his age at least. He of course asks if he can help, I say “Super King Size, Extra hard, zip together.” He looks happy, someone who knows what they want. He guides us to the “firm” beds and encourages us to lie down brings pillows. We dive from bed to bed with him following clutching the pillows. As a pair we are quick to dismiss some of the products and “maybe” some others before saying “this one”. Its the fastest we’ve ever made a decision and the assistant is taken aback a bit. He looks to see what the delivery time is and looks up at and says those musical words to our ears “this one comes in extra firm”. Instantly I say “we will have it”. There then follows the usual non-essential sales bollocks but all we care about is getting the old one taken away at time of delivery. So in a very few minutes we do the deal, pay the money set the delivery date and wander out of the shop clutching a recycling bag for the old mattress and promising to do the feedback survey and that we would mention Prakesh in our feedback. We must have been the easiest sale he made all week.

Being on a roll my partner returned garments to Next without a hitch and we rewarded our selves with croissants and warm drinks in a vegan friendly café. I sat and watched the flow of people wandering by. A huge tide and a true mixture of cultures, colours and presentations. It struck me that all of them were just getting on with life, a huge silent living process that in this situation had no agenda, no dispute just doing daily life and not wanting that to be interfered with or interfere with anyone else’s. The agendaless public just living as best they can. I’m struck by the thought of where all the other stuff comes from and realise I only know about the other stuff either via social media, which is really a shouting contest, and what my friends share with me about their lives and experience of others. My friend’s accounts of even the bad stuff is far more rational and kind than all the other “noise”. Looking through the glass front of the café makes me feel as if am looking at an aquarium of people, it looks peaceful but I suspect there are predators lurking in this reef. These are just impressions and probably do not stand up to considered scrutiny but there lays the poetry.

Refreshed I and my partner buy the usual gifts to give to the host when visiting for a meal adn make our way home. I watch football and rugby until as a family we go to friends for an evening meal bearing the gifts we acquired earlier. To my surprise and delight they have lit a real fire and we sit before it nobbling things, chatting and watching the flames. The meal is a chance to catch up with all our news and what is happening to the people we know and to exchange view from anything from bombing foreigners to the annoyance of leaving pots and pans in a sink to soak. With midnight approaching its time to bid farewell and drive home through the fog. Once home my partner and eldest daughter go off to bed while I clear our kitchen and then take my meds. I’m too tired to draft a blog, that will have to wait until tomorrow.

Sunday starts with me weighing myself, I am not optimistic, but to my surprise I have dropped 0.2 kilos which keeps me just under the dread 99 kilo mark. I make warm drinks for myself and my partner and slowly we surface properly, comparing notes on yesterdays adventures and trying to get motivated for the rest of the day. The up shot is that I take my vitals, have a light breakfast and morning meds then face time my youngest daughter and the new grandson. I’m hoping they visit again soon, but lives are busy and need to be planned. On the way to the gym we stop off to check the tyres on my partners car. They are way down on what they should be and it explains why the car did not handle as well as usual last night. So we arrive at the gym and while my partner does the healthy things one does in a gym I sit in the lounge drafting the blog, sipping red berry and flower fruit tea and eating a bacon roll. So I am up to date and as a reward sit and read the copy of the original Velveteen Rabbit a friend has sent me. A beautiful book with all the original illustrations. It is a classic. I’m tempted to point out how mundane all this is but maybe its just “simple” because of what lay beneath. Below is my other dark poem that I wrote recently after I found myself breathless and my blood pressure had spiked. Clearly one of my “bad days” but I suspect that this undercurrent of the battle that is going on is what saps my energy and makes me try to keep my everyday life mundane and simple. Like a swan gliding on the surface, underneath it all I am paddling and fighting hard to stay on course. It seems that only in my poetry does this ever really surface, perhaps my poetry strivings are a little less vanity driven than I give them credit for.

Scared,
I am scared,
And find myself shaking,
My body full of anxiety.
All my joints rigid waiting.
The cancer is gnawing at  
Body and soul.
For once I am without options, 
Or strategy to cope. 
I wanted to model death with dignity
But I find myself trembling, 
Breathless and terrified.
I tell myself the arithmetic is good,
And so it is, but it counts for nothing 
When I piss blood
Or my dick hurts afterwards.
I take painkillers, 
I take my meds
And try to rest,
My inactivity dampens me,
And I struggle to the surface 
To gulp in air, 
To pay attention
And to remain calm. 
This is not what I had in mind,
A legacy of bravery for my family,
A model of how it can be done. 
I fear I am failing in my last act,
The lines forgotten,
I am stumbling off the stage,
Not exiting stage left
With a flourish and a kind word. 
Writing this is a diversion,
A declaration of horror,
In one last throw of the dice 
To hold onto something. 
How I envy Lawrence’s bird
Tumbling from its branch,
Never feeling sorry for its self.
Nature made me different,
And it is a divide I cannot hide.
Of course I will fight,
Of course I will go on,
But I have no illusions any more,
Death is making me a coward.
So I may weep occasionally
And feel sorry for myself
As I feel the pull of earth and fire
And an end to it all. 
								363	6th January 2024
 

My afternoon proceeds with rugby/snooker and then I slide into the evening not knowing what it holds for me, perhaps a bath. Or as it turns out Vera, chocolate and then an almost early night to bed full of my chemo and empty of energy.

Friday, I wake up after a reasonable night and check my cyber messages, mail and litter. With that done I check my vitals, all good there, and then what sport and programmes are on today. My partner brings me a hot water and then my final pre rising act is to book tickets for Carmen in April. With all that life admin done I get up and make myself breakfast, during which I check the blog and begin todays version. The world is then my oyster.

It is not long before I am hanging up my washing and then heading for the Shed to write more letters. The air is feeling chilly and I hunker down in the Shed and scribble away stopping only to get an apple to nibble and my seal ring to seal the letters. I pack up my things but before I leave the Shed I refill the bird and squirrel feeders. The trip to the post office tells me that it is getting colder. I post my letters, grab a paper and return home to do the crosswords. Today I am on form and flash through the crosswords without having to resort to Google. I note I am flagging and watch the quarter final of the snooker as I try to muster more spoons to get through the evening.

The evening arrives and there is no word from the book project team so I guess that will be that for the weekend. I dine with the family and then return to drafting the blog and watching the second snooker quarter final of the day. There is a choice of things to watch tonight and I am not sure what I will end up doing. I am bored drinking hot water so I get a selection box of teas out of the kitchen cabinet that was a present from a friend a long time ago and have a go a at one of the berry ones. It brings taste and a much appreciated change to my taste buds. I shall work my way through them and see what grabs my attention.

Already my attention has turned to tomorrow when with luck and a following wind my partner and I will go shopping for a new mattress. Neither of us can tolerate our current one any longer and we both agree we need a much firmer mattress. Shopping is not my favourite activity but needs must.

During today I re-read my two most recent poems that are rather dark and decided I would share one. I think it exemplifies how under my mundane life at the moment there is an undercurrent of cancer that continually flows and affects me.

I’ve just seen myself,
I’ve been written down on a form, 
“my terminally ill husband”.
Just when I thought I was getting away with it.
Of course, I’m not stupid, 
I know the score, 
My bladder and my gut
tell me everyday 
it’s getting worse. 
Pain when I piss, sometimes,
unpredictable bowel movements,
it’s all there,
written in the toilet,
where no one wants to go, 
least of all me.
I was scared enough as it was,
But now my not so secret,
Secret is out, 
I’m terrified. 
My drink of necessity is now hot water,
my food plain,
my hope draining away.
This is a terrible place to be,
I try to move and find I am pinned.
I flounder and thrash a little
as I try to see a poetry book through.
I try to fight, to see things happen,
to put up a good show,
but its miserable and 
I can’t help knowing it’s going to get worse.
Its stark and bony
like my poetry,
like stepping from light to dark. 
There is no argument to be had. 
This is how it is,
and yet I want to fight,
to struggle and to go on.
It seems rude not to,
a betrayal of the those that love me, 
So just one more poem, 
one more moment of trying 
to capture the moment, 
to be honest,
and to be alive.
Maybe, just maybe,
this is the side effects 
of Chemo and twenty-eight day jabs,
but palliative means “sorry mate,
your fucked.” 
But pity me at your peril,
I have pen and ink
and in these I have strength. 
I am scared but not defeated,
I will fight, 
I will find ways for little victories
before I go down,
I’ve not even reached 
the morphine stage yet.																		

Thursday and I wake after a reasonable nights sleep. The usual checks on my phone get made and before I get up I check my vitals. There is no sign of the first draft of my book. I have breakfast and then I get myself off to the Shed. I stay there all morning writing letters until I take a break for lunch. I return to the Shed to keep catching up with my correspondence. The afternoon darkens and by four o’clock I have finished my letters. I have enough time to close up the Shed and make the trip to the post office to send my letters on their way, taking the opportunity to pick up paper and some chocolate.

On returning home I find that there is an email that has the initial draft of my book with it. I open it and my initial response is one of disappointment. I had set my expectations too high. I put it aside for a while and then returned to it to pick it apart and make feedback notes for the production team. When I was clear about what I want I emailed the team and told them what I actually want. An acknowledgement came back quickly but I now have to wait to see if I am getting closer to actually having a book. The evening rocks up and Amazon delivers my new fluffy training bottoms that I’ve taken to wearing for comfort when at home. I eat with my partner before she does her singing lesson and I watch a snooker match. My evening concludes with drafting the blog and night meds. I wonder how my book is going to turn out. Tomorrow I must make the effort to get out of the house and be a bit more active. Today has been a day of catching up with my letter writing now I need to move on.

Wednesday and I wake to a cold and frosty morning so I huddle down and do my usual cyber checks for messages and litter. Before getting up I’ve done a Tesco order, taken my vitals, checked televised sport (none today worth watching), checked my internet banking and bought some new fluffy joggers. So by the time I get up and dress the basics are done.

Breakfast is a fried egg sandwich and more hot water, morning meds and then I check my blog to see if anyone is looking at it. So my day starts with a quick blog update and I plan the rest of the day. I am quite excited by the fact that the first draft of my book is supposed to arrive today but as its coming from America its going to be later in the day. There is life admin to be done and some domestic chores till lunch rolls round and my partner and I settle down to a bacon sandwich. My partner has been filling in forms and in them I am referred to as “husband who has a terminal illness”, it struck a chord and I start a poem which I continue after lunch when my partner goes to see her mother. Like the poem I wrote two or three days ago it is dark and raw and again I do not feel able to share it here just yet. I need time to think my poems through before I put them here even though access to this site is confined to friends and family.

Its a cold day and I am still sore from Mondays injection so rather than heading for the Shed I hunker down on the sofa and write letters and watch a snooker match. Snooker can be addictive, I am discovering, and when people play poorly I realise just how skilled the good players actually are and that there is a fine line between the two states. I am engrossed in a final frame decider when I realise I’ve missed the post and all I can usefully do is bring the bins in and clear the place up a bit.

My partner returns from visiting her mother and our evening begins. Food followed by an evenings TV entertainment. Every so often I check my email in the hope that the first draft of my poetry book has arrived but I need to be patient and remember that America is many hours behind us, but I am curious to say the least. I guess it may not arrive before I’ve taken my night meds and retired for the night so it will be a Thursday delight, fingers crossed.

Tuesday and it was a rugged night as my jab side effects kicked in. When I woke my partner had gone to work and I settle down to check my messages and cyber litter. I take my vitals and find them to be all good, and am considering breakfast when a friend rings me up to wish me Happy New Year. We compare notes about our festive seasons and all that has been going on for us. Its a real pleasure to have the conversation and t catch up with we both are at the moment. There is significant juggling for both us to do in this new year to keep our energy and to achieve what we want to. After forty minutes we say farewell and I head off for breakfast and my morning meds.

I am sore from yesterdays injection and I had already decided to have an easy day so I sit on the sofa and eat my fried egg sandwich watching the last episodes of series 3 of the Mandalorian. By lunchtime I have finished my binge watch and make myself lunch. I send a couple of messages to the crew in America to chase my book and get very predicable chat bot responses back. I watch Wonder Woman on Disney+ and continue my lazy afternoon watching the snooker on TV while starting to draft the blog. While doing this I nibble snacks and rediscover apples. I realise that my fruit consumption of late has dropped off radically so it was nice to rediscover the humble apple. A quick sortie to put the bins out for tomorrow and before my partner returns from work tells me how cold it is outside.

My partner returns from work and we chat about the day and how we are before we slip into the evening. For me it will be a continuation of my resting and making my way to an early night. So far I’ve managed to avoid taking paracetamol and have kept myself comfortable. I’m hoping I can maintain this. If I can, then perhaps I will be a little more adventurous tomorrow. Sometimes I feel like I need to crawl through the mine fields before I can fight again.

Jab Monday rolls up and I am awake at 7:30. Today is the fourth anniversary of ending Chemo I back in January 2020. So here I am still having my 28 day jab regular as clockwork. I am not sure whether to take comfort from that or not. My partner brings me my morning hot water and I check my messages, emails and cyber litter as usual. I am reluctant to get up and choose to do my vitals. They are all okay, so the arithmetic keeps being right. I watch a couple of comedy snippets from my news feed and finally decide to get up. Having got dressed I have a clear out of old drugs and out of date COVID tests, before having breakfast. I put todays Jab on the radiator to warm through as an experiment. I am hoping it will cut down the viscosity of it so it goes in easier later in the day. I do not want to keep taking prophylactic paracetamol as I think it causes constipation and I can do without that. So on this jab I’m going to try and ride out the side effects. Not what I would ideally like to be thinking about on a Monday morning but there you go. I was think about what people with cancer do apart from having cancer. Of course I do a lot of ordinary stuff, life is full of that. I know some people go on a “mission” a sort of “fuck cancer” life statement but I am more into being in the ordinary. The ordinary of life for me holds a lot of wonder so I am content with that. Plus the fact that is what my energy levels (spoons) allows me to do most of.

So having done breakfast I cast around for my next ordinary and find that the tumble dryer has stopped working. It has stopped rotating so its a case of clearing out the filters and then when it still wont play nicely, takin gits back off. Of course that requires clearing everything out around it including lost socks adn other items that have fallen down the back of it. With it in a cleared work space I get the back off and inspect and then manipulate the drive motor. It has jammed due to the front door filter having been full, that’s the power of aggregated fluff for you. A little gentle teasing unlocks the motor and it is soon rotating and driving the drum. Having done this manually I test run it dry for a few minutes. All good so I add a pair of wet jeans on quick dry to check all is really good. On checking the garments are still damp so I pop them back in on a longer cycle to check the drying elements are actually working.

I while away the time drafting the blog as the window cleaner creates the illusion of rain outside. I’m not sure if the windows are any cleaner after they have been. I feel like I’ve entered into a collusion of some kind but I am not sure what. I’m not an expert on window cleanness and I am not sure I can tell the difference between the effects of the window cleaner and a bloody good downpour. I take it as an act of faith that the window cleaner is worth the monthly £22. I BACS the money with my usual text follow up as evidence I’ve paid and that’s it for another month. So I settle in for the rest of my day, looking forward to lunch, taking in the Tesco delivery and then going for my jab, after having my seeing a medic shower of course. After that the dark will set in.

I lunch with my partner after moving the car of the drive so Tesco can deliver an discover how cold it is out side. I settle down to read for a while. Homo Deus by Yuval Noah Harari is the book, a present from a friend at Christmas. I have read his other book Sapiens, but Homo Deus is a prediction of what humans will become. It was published in 2016 and has as its last section The Data Religion and it is now out of date in that the explosion of AI has gone far beyond the predicted dataism that Harari foresaw. He does however raise the interesting the questions of the future, the most interesting and challenging being “what will happen so society, politics and daily life when non-conscious but highly intelligent algorithms know us better than we know ourselves?” One recent study, post Homo Deus, showed that Google based on a 100 likes was better at predicting what choices we would make than our closest and most intimate friends. So how has society, politics and your daily life changed? My own thought is to engage with the algorithms as little as possible but assume that the “world” knows everything about me anyway and to not give a toss. I have no Facebook or TikTok, my X account has never been used (I never really understood how to use it). My phone is my personal assistant, message taker and sender. Anything not a personal letter, a bill or a hospital appointment that comes through the post gets binned. Cold callers on the phone have it put down them, I buy nothing at the door or by phone. I am interrupted by my Tesco delivery.

The evening is front loaded with the Mandalorian and then moves onto the BBCs quiz evening and the new series of Silent Witness. As I watch and try oy relax I can feel my injection site getting sore and my spoons ebbing away. Because I had the jab later than usual I am going to bed knowing its going to get worse during the night and I will be waking up with it getting worse. I wash my night meds down with a 0%rum and coke and finish off the blog. Tricky times.