Monday and all the household have all gone to work. I get through my morning cyber chores quickly and check my vitals before getting up to a light breakfast. I clear Daisy dishwasher and then pop my weekly wash in. Once settled on my end of sofa office I start to work on my second collection of poems. There is a rewrite of the dedication to do and the construction of the contents page. The bio also needs to be upgrade for this collection. I beaver away until lunchtime when I take a walk to the village shop to get a paper and doughnuts. After a bit of a rummage in one of the kitchen cupboards I find my glass tea pot and the remains of a canaster of very berry tea. So armed with berry tea and a doughnut I have a lunch break and then start to do todays crosswords, which I flash though unassisted by Google. Reminded how much I like berry tea I order more so that I can continue to indulge in the weeks to come. I get my washing on the line and retreat to the sofa.

I start to write a letter and get into a flow just as Tesco arrives to deliver. I am on my own so it takes bit longer. The driver departs and I squirrel the goodies away. In doing so I find packets of stuff with use by dates at least one or two years out of date. What was I going to do with Panko crumbs I have no idea. So I bin everything that is out of date in one of the cupboards, and it makes a huge difference. I return to my letter writing and get so into it that the afternoon passes quickly. Before I know it I have missed the post collection time so abandon the letter and get my washing in and hung up to take the last of the chill off it. I am pleased that so far today I have been feeling better and avoided taking Lemsip, the less meds I can take the better is my stance.

My partner returns from work and we eat tea, sliding into the evening. There is no football, no rugby and nothing of note on TV so I guess we will hunt through the platforms to find something to watch. I do not really care what it is, as I am running out of spoons and to be honest I just want to get to tomorrow as it is the day I get to hold my book in my hands. I crave that moment of when I physically hold it in my hands, I hope I am not disappointed. One thing I am sure of is that tomorrows blog will contain a picture of me holding my book with an inane grin on my face. So tonight I shall down my chemo meds and head for bed early in eager anticipation of Tuesday.

Sunday and I wake up still with my lousy cold. Its a effort to get up, but get up I do, and have breakfast. I decide to have Lemsip to see if it helps and then wave my partner off to the gym. In an attempt to keep myself going I prepare the manuscript, dedication and bio for my next collection of poems. I’ve decided to change the tittle from Hotels and Restaurants to The Travelling Years so that it chimes in with The Cancer Years collection. I will do nothing with it until l see the Cancer Years actually published. I am still in a state of doubt as to whether this will happen.

My partner returns from the gym and we have lunch by which time there is a rugby match to watch on TV. As the afternoon wears on I feel progressively more crap and decide on a second Lemsip to try and ward off the headache that has developed. In the end I surrender and and try to nap it off while resting on the reclining sofa. I fail so start to draft the blog while my partner prepares tea.

The evening will bring Death in Paradise and an early night along with the usual night meds. Of course there is the Tesco order to do. This all sounds boring and mundane but in the day there have been good messages from friends and I am thankful for them. Its difficult to be ebullient and witty when you feel like crap and the efforts already made in the day have rendered you spoonless but that is where I am at today.

STOP PRESS: My poetry collection The Cancer Years: So Far, is now available on Amazon! I am a self published poet! E-book and paper back available. It has actually happened, I’m knocked out. My partner found me on Amazon this evening at 8:30pm. I could not resists ordering some for myself, and if all goes well they will be with me on Tuesday. I will be able to hold the actual product in my hands, I hope I am not disappointed. For now though I am elated, snotty with cold, but elated.

Saturday and its an early start as we have “drive and patio” man coming to see us this morning. However first thee is the usual look at the blood results that came through last night. They are good and they are below.

There is little time to discuss the results over the early morning warm drinks as we need to be up. This is an effort as I have clearly gone down with a cold, all the usual symptoms but by far the worse being the way all my internal organs appear to be trying to escape via my nose, so I get myself ready clutching a handful of handkerchiefs. Almost dead on nine 0’clock the builder man arrives and we spend the next hour talking about bricks, paving and all the details of the projects he is going to be doing. After all the toing and froing we go and look at where the new front posts are going and then at the samples of the materials he has brought with him. We have a final chat and then he departs.

My partner and I have breakfast and then I retreat to the sofa and start some serious resting as my cold tries to get the better of me. It is clear that I shall not make my poetry stanza meeting, I just feel too crap to do anything other than sit and watch football and rugby. It gets to the point where I cannot bear my runny nose any longer and take an Actifed. I am never quite sure how Actifed is going to react with whatever meds I am taking so its a bit of a gamble. I down the Actifed and wait. Slowly my nose shows signs of stopping its flow. So the day passes as I drift from what ever TV wallpaper is on offer. I intermittently check my phone for messages and check the football scores. Through a lunch of soup and a tea of smoked haddock I laze and mop myself up hoping that I am on the road to recovery. The evening is more of the same as I put myself into cruise mode and draft the blog. Its crap having a cold, I’m going to leave it at that and take it as given that I shall in due course take my night chemo and have a shot at going to sleep. So the good news of my blood results and the growing hope that my book is actually going to appear has been overshadowed by this damn cold. Of course the worst outcome would be for me to slip into the dreaded man flu. Perhaps this can be avoided by an alcohol free spiced rum.

Bloods Friday starts with a start as I wake suddenly and not sure why, but I soo realise I have a runny nose. Bollocks is my first thought followed quickly by “where is my handkerchief?” I check the time as I have to be at the GP surgery for 9:45. I have time to check my phone for emails and cyber litter before my partner brings me my hot water. I sip it quickly, measure my vitals, still all good and no signs of a temperature, rock steady at 36.1 degrees. Just a runny nose so far then . I shower, take my morning meds and walk down to the GP surgery. I am called in quickly and the vampire nurse has a quick chat with me as she expertly draws my blood. Instead of retreating home I buy a paper at the village store and head for the café. As the cafe has less than ten sitting spaces it is not required to have a toilet, so it doesn’t, which means I need to time my stays well. I dine on hot chocolate and a bacon and sausage baguette whilst I rattle through the two cross words. Another day when Google is not required, go me.

I walk home slowly feeling snotty and already tired so I take up residence on my working end of the sofa and settle down to rest. My nose persist in running and I debate as to whether or not to take Actifed, it always works for me but I am not sure it is good with my other meds. I decided to rest a bit and see if my nose stops running or not before deciding, my eldest daughter offers me Lemsip but know these are not good with my meds as they have Ibuprofen in them, which definitely do not mix with my other meds. I rest a while to lunchtime when I do little light tidying and play loo roll fairy before making a cup of herb tea and starting the blog. It is at this point my nose runs profusely and I sneeze a lot, which makes the Actifed decision for me, so I take one and sit back adn wait for it to kick in. It will dry my nose but prolong any cold I have by about 24 to 48 hours but I will at least be comfortable. I do need to be non snuffley by 4 o’clock today as the Americans are ringing me allegedly to get my book up onto the Amazon platform. I’ve been here before and it hasn’t happened so I shall wait and see it becomes a reality or not today. Until then I rest with my “I Am Out” hat on.

One or two people have commented on the skating video I posted on yesterdays blog, it appears other people were impressed by it. Its nice to know that occasionally something I post finds other homes.

It’s late, about 11 o’clock and I get an email from the Americans saying my book will go live by Tuesday and have included the ISBN numbers and the prices. It’s going to come out as an e-book and a paperback. I still do not believe this is really happening and will only believe it when I see it available on Amazon. I am supposed to receive some copies but I might just buy a couple off Amazon for the thrill of it, if its all true of course. Now I sit and wait for my blood results to come through as I battle the cold I seem to have acquired. Life can be a really contrary bastard at times. My bloods come in at midnight! They are good again, the arithmetic is in my favour, that’s two lots on the trot, nothing to do but take my meds and go to bed satisfied.

Thursday rocks up to find me rocky. You know one of those days when you wake up and just feel off for some reason. I’m very disappointed as I had hoped for a good day today, however one must get on with it in the belief that things will turn around. I go through my cyber routine of checking messages but before I can reach the end the window cleaners are at the windows hosing them down and cleaning. I remain in bed and wait for them to go before going about my business of finishing my morning checks. There is no significant cyber litter today and as my partner brings me my morning hot water I complete my usual vitals check. Once again they are good.

I have a simple breakfast, take my morning meds and clear the kitchen before retrieving the garden camera from its position behind the Shed. On checking the contents I find the usual pidgeons, squirrels and cats, only once to I get a blurry picture and a clear video of a fox. No sign of any hedgehogs, which is disappointing but it maybe that I am expecting too much this early in February. I take a bit of time to wander my garden and appreciate all the plants that are responding to the additional light that removing some trees has had. Spring is really getting a move on, which feels optimistic in the face of my own more pessimistic demeanour of late. My garden once again lifts me.

Everywhere I look I see bulbs throwing up their shoots. After years of bulb planting Spring now seems to take care of itself in the garden. It buys me time to plan and think about what to put in for the summer months. On days like this present day me is pleased that past me took the trouble to plant all those bulbs. The spikes of bulbs in the pots are pushing through the winter violas and pansies that I put before Christmas so I have both colour and more flowers to come in the pots for a couple of months. The family lunches together on pasta as my partner and eldest daughter are going with her brother and niece to see a show tonight, so I shall have the evening to myself to watch Oppenheimer.

My afternoon begins with the arrival of post and to my joy there is a letter from my friend in Scotland. Attached to the letter is a gift which makes me laugh and lightens mood immensely. It will become part of my coffee table equipment and be there to cheer me every day. Who would not be cheered by an irreverent Pooh.

I settle down with a coffee and read my friends letter. Always such a pleasure to get a letter. Today has turned out much better than I expected. There are more presents in the letter, my friend spurred by Dancing on Ice and her own interest sends me a link to an extraordinary piece of ice dance. I found it breathtakingly beautiful, what a gift.

In the same letter tucked into the back is a poem. One that again is a gift and very apt for my situation. It reminds me that these expression in all the arts are a marker that others have walked the path that I am on and have found things along the way that make the everyday bearable and to the curious, a way to new understanding. I am curious and look it up on the web and find my friend has omitted the last two stanza, but also find that other people have as well and used the shorter version on posters. The full version is below.

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honourably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond

                          Jalaluddin Rumi

A friend messages me to share her plans for the weekend as she continues to recover from long COVID. Having recently “gone live” back at work this is an important step. It is clear that long COVID requires patient management to recover. I think that once people see someone return to work they believe the person is recovered, even if some significant work adjustments have been made. It is a mistake as my friend clearly demonstrates that there has to be continued careful management of activity and rest. It is still a fine balancing act to maintain a recovery path that brings someone back to the fit person they were. I wonder how many people actually understand this.

My afternoon has been full of gifts that have fed me, stimulated me and encouraged me. It is these things that friendship brings and that makes the relational realm of life the one that is most precious.

I move into my evening feeling lighter and it matters little what I do as the day has been rich and stimulating. I now need to rest and soak up all that has come to me today. I spend my evening drinking water to maximize my hydration as tomorrow I am having another set of bloods taken prior to my oncology review next Thursday. Apparently maximizing my hydration helps maximize my platelet score, so three pints of water and my night chemo meds I go off to bed in the hope that I get a perfect in range set of bloods like last time and of course my PSA continuing to fall.

Wednesday, Valentines day and like all days these days it starts with cyber rituals, messages, news feeds and litter followed by taking my vitals (all good again), and then getting up and making breakfast. This, although sounding easy and normal is taking an increasing amount of time as my energy levels get depleted more quickly these days. On rainy days like this I do not mind, a slow start to these days is pleasurable but when the weather picks up and is sunny it is less of a joy. There is not a lot on my agenda for today apart from an expected call from the book people in the USA.

My partner unbeknown to me posted a video of me tossing pancakes on the family WhatsApp yesterday, for any one interested here it is. It at least shows I can still learn new skills but it also reminds me of a prostate cancer advert that showed a recovered man smiling happily and sticking pancakes to the ceiling in joyous fun having had the news he was cured. Me not so lucky, so it would appear tossing pancakes is an unrelated activity to wellness or cure.

Mid morning I listen to Ginsberg read his poem America, if you have not heard him do this it is worth a listen if you are into poetry, American Beat poetry that is. I’ve put in below if you have 10 minutes to spare. The experience of hearing him perform it is vastly different from just reading it.

Any way having listened to America I felt moved to write a poem, not a Ginsberg standard poem but one where I try to grab the moment of how it is right now.

368
I have meditation in my ears
where once was Ginsberg,
that howling man of America,
seeing lions and decrying
the loss of self.
I heard the voice
of stand up poetry,
the passion and the humour,
compassion for the other. 
How and where does this come from,
these  tears unshed, this despair?
There in the air is the message
that I shall never,
or never shall,
speak aloud
this distress contained within. 
Slowly but surely disintegration
Seeps through both body and being
that is unspeakable
to a world of war and
others pain and burdens.
This utter insignificance
Is desert like in its vastness.
I have visions, fantasies
of knowing rest
but it is all too much.
I turn up the volume
of Alexa’s calming offerings.
Noises not music, supposedly serene
but now wallpaper to hang around me,
buying time to write;
no scribble, scratch around
the fear of dying.
As things slow down 
I function less.
Every blog starts
With the word “fight”
but my jabs are slow,
my hooks weak,
all from memory
of who I used to be.
What I am now is too terrifying
to look at, freakish,
a thing I never thought I would be.
Not just old but dying
beyond my control,
like this poem
it is to be long, drawn out
and never a hint
of Ginsberg, Wantling, Ferlingheti
and all the breathless poets whose voices
shook the world.
All I ever was is
never to be.
Ungrammatical silence is my legacy.

								 368 14th February 2024

Like I say not a strophe to change the world but how it is, sort of, for me. Back in the Real World my partner goes to see her mother with her brother, eldest daughter already off to work. I am alone and of course I set about making a meal for them to come home to in the evening and then the afternoon is mine. I do not do much with my afternoon except apart from drifting through cyber space and tidying up my laptops. My partner returns home as does my eldest daughter and in due course we sit down to the evening meal.

Over the course of the evening there is football and films, the last being What We Did On Our Holidays, a lovely film. A bit bitter sweet experience as it is a comedy about children giving their grandfather, who dies of cancer on the beech, a Viking funereal. Eventually I get to take my chemo and take myself to bed. Its been a strange day of contrasting feelings and rather disconcerting.

Tuesday, I wake to find my partner gone to work and soon to be followed by my eldest daughter. I check my cyber world for messages and litter and then take my vitals whilst listening to Alexa play me meditation music. I get up and take my morning meds and then get myself ready to walk to the shop and then the village café for breakfast. The rain is light as I trudge the shop to buy a paper and some honey adn maple syrup for the pancakes I intend to make today. The shopping goes well but I am aware that I am already flagging and look forward to a sit down in the village café. I am deeply disappointed when I find the café full and I am forced to walk home to make toast and hot water. The walk is a real effort a I do not feel great but I make it, feeling breathless and not myself. I tell myself I need food and eat as soon as I get in.

As I nibble my way through my toast I do the crosswords in the paper. Another day when I do not need Google to help. Feeling a bit better I start to weigh out the ingredients of my crepe batter. My plan is to make batter and give it time mature in the fridge before I use it. I get the most of the pre mixing work done and then find that the cutlery organiser in the kitchen unit draw is disgustingly sticky. I take every thing out and wash it all and the take the actual organiser out and scrub it clean and dry it off. with everything dry I put everything back in the cutlery draw. This is a prime example of “puttering”.

Having Puttered I am now knackered and need to rest so I put my feet up and start to draft todays blog. I am of course eager to get my crepe batter prepared but it is too early and when I search the internet for how long batter can be child for there is conflicting advice. I should know better by now. Any time I go onto the internet to look for advice there is always contradictory advice. On balance I’ve decided to make my batter for 4:30pm and stick it in the fridge until people come home and have tea after which I will perform my magic. It leaves me most of the afternoon to spend as I wish, but today is a slow day and I find myself trying to rest as I watch the rain outside and realise I’ve not filled the squirrel feeder or taken the bins out for tomorrow. So there is more Puttering to be done and probably some pottering as well.

I mange to get the bins out and I make a batch of crepe batter and pop it in the fridge to chill. I’m tired and so I watch some Disney Star Wars nonsense until partner and eldest daughter return home from work. We eat tea together and I get the my batch of batter out of the fridge and produce shrove Tuesday pancakes for my family. It goes very well and my new crepe pan was brilliant. I am glad I watched a video on how to toss a crepe and I manage to do so without accident. Post tea I watch a bit of Disney nonsense and some TV, but importantly I am able to sort out an issue with my book publication with an acknowledgement that I have paid for both editorial and print costs. I am hopeful that this will move things forward. Tomorrows call will sort it one way or another. My evening ends up with me taking my chemo meds and retiring to bed hoping to feel a bit more lively tomorrow.

Monday, I wake and despite my protestations about not watching the Super Bowl I did stay up to watch the first half, by which time I was bored with what was up until then a boring defensive game. So I wake tired and when I check my news feed find that the Super Bowl turned in to a nail biting classic. I have no regrets about missing it, as a sporting spectral goes there is not a lot of sport that goes on, almost everyone is more interested in the celebrity crowd and the half time entertainment. Give me a full blooded rugby game any day, no padding, no helmets just flesh on flesh brutality and speed. Needless to say I wake up a tired. I follow my normal routine once I have been brought my now usual mug of hot water. The cyber check gets done and I do my vitals, again all good. So its a light breakfast with morning meds and a check there is no blood in my urine. Its thankfully clear so I settle down to spend ages searching the internet to understand what my Fn key does on my laptop keyboard in order to understand what is going on with my partners work laptop. I finally sort out my keyboard but my partners laptop is truly screwed so she will get a new one when she goes into work tomorrow. So by lunch time I am a bit more tech savvy. Having cleared the kitchen it becomes time to think about tonight’s crockpot meal and a smidgen of lunch. I’ve asked the American book people to contact me today to finalise what it is they are supposed to be doing, if they do not show that will be it as far as I am concerned, I shall switch to an English company who I know have produced the goods for one of my partners colleagues and cut my losses.

My afternoon passes, mostly with me researching the local parish counsel. My partner has expressed a preference for where my ashes will be put, so I am trying to sort out having my sisters ashes placed in the same place. It turns out the local parish counsel has to have a burials officer, so I need to be contacting him soon or get a local funeral director to do all the bureaucratic crap for me.

The evening comes around when I eat a meal with my partner before she goes out to see a friend and my eldest daughter goes of train. I am alone at home so indulge in watching the third of the original Star Wars films. If only they had not invented the Ekwok, but all in all its stood the test of time quite well. I return to the blog to finish drafting it. At some point this afternoon I wrote a poem, another of my more recent darker ones. Bizarrely I get an invitation to a book and writers fair in Los Angeles from the American book people, they really do not get it. I’ve given them a time to ring me tomorrow at their request so I will see if this one last shot actually works, if not I will walk away. I am running out of time and need to switch to an English publisher soon. For now its time to take my night chemo meds and head for bed.

Inner strength, it’s what counts

Sunday and I wake from a deep sleep feeling slightly disorientated. Of course it being a Sunday I weigh myself. 99.3 kilos comes up, exactly the same as last Sunday, so at least I’ve held steady for the week which is good given that I have not been able to bring myself to train this week. Fear of what it might do to me is probably the reason, I can’t face the distress of peeing blood that often. Once in a while if I have trained to hard is almost acceptable but not when it is induced by very little activity. So 99.3 will do this Sunday.

My partner is reading her Kindle and sipping tea when I climb back into bed and begin to sip the hot water she has brought me. We fall to chatting, me reminiscing about my infant school days where all I can remember learning is some basic basket weaving and how to make a recorder from a length of bamboo and a cork. The woman teacher who had both pitch perfect hearing and the ability to cut the shelf of the recorder with a Swiss Army knife with unerring accuracy was the person who taught us these handy life skills. On the other hand a genial Mr Ballack instilled in me the wonder of science when he demonstrated the the strength of air pressure by getting us to try and dislodge a spread out newspaper by hitting a ruler slid half way under it on a desk. All those 28 pounds of air pressure per square inch was to much for our juvenile bodies to move. Out foxed by something invisible seemed magic to my child mind. Unfortunately learning in school was not all demonstrations and as it increasingly demanded that such wonders required the ability to read and write my curiosity got sabotaged by my unrecognised dyslexia. It meant I gravitated to art and ball sports and increasing humiliation at the hands of adults and peers alike. I suppose my delinquency was predictably, but I was lucky my delinquency was primarily of the mind and not of the physical violent or thievery type, give or take a bit of shop lifting or the collection of car club badges of the front of cars. My best one ever was a Butlins Car Club one with a diving woman on it.

Anyway my partner and I agreed that school years were not the best years of our lives. Of course on a Sunday morning this conversation turned to the meaning of life and what on earth we are doing here. Predictably we did not find a definitive answer at all and we wandered about in conversation like I guess millions of others have done. At the end of the conversation the only thing I got in my head was the possible reason that sea otters hold hands is that they are not doing anything attached to surviving the wind and currents of the sea but where in fact securing themselves from loss while in the ocean of meaning seeking. With that I measured my vital, all good, and then got up to have breakfast with my partner. I’m not at my best today but I help change the bedding on our bed and then clamber into my partners car and go to the gym with her. She goes up on the gym floor and I start to write todays blog and decide what poem to take to next weeks poetry stanza meeting. I have things rolling around inside me that need writing, as usual I am not sure what they are but I know its in there somewhere waiting to get out, I just need to be patient and let it arrive in its own time.

As for the rest of the day, there may or may not be a rugby international to watch, but I already know that I will not be staying up to watch the Super Bowl, a 23:30 kick off is too late for me, especially when there is so much tedious razzmatazz that goes with it that the actual game almost becomes an irrelevance. My evening consists of a roast dinner, a face to face call with my youngets daughter and then I sank into TV and the up dating of tomorrows Tesco order. As I carry out my Tesco chore I feel my energy spoons ebbing away so I know I am slipping into preservation mode, which means Call the Midwife and Death in Paradise, and then a retreat to bed. The reality turns out a bit different, in that my body clearly thought the activity of the day was too much and nudges me with its warning sign of a small amount of blood in my urine, so its back to downing a lot of water and seeing how things go. Tomorrow is going to be another see how it goes day.

Saturday and it drugs wallet filling time to see me through the next two weeks. So after a lean breakfast and a bit of a tidy up I sit down and perform my fortnightly drugs wallet filling chore. Its a fiddly chore but part of the organisation I’ve built around me to keep me going when things are tricky and I need to keep things simple.

My partner has gone to have her hair done so I start the blog for the day and get myself organised, there is food shopping to be done when my partner returns. On my partners return we go to a nearby garden centre for lunch and some chat. After a pleasant time we drive to the next garden centre where we food shop.

The late afternoon is spent watching the six nations rugby internationals, which takes me through to the evening, tea and more Jonathon Creek. As the evening goes on I feel my energy ebb away, until I take my chemo meds and take myself off to bed. Its been a reasonable day, and I need more of these to build my confidence back. It will take time and a few sessions back training again so its a longer term process.