Thursday and I wake up late after what feels like a deep sleep. Its almost the start of my oncology review time slot but I gamble the oncologist will not have their act together enough to be at the start of the slot. I do my vitals, check my cyber messages and litter and then get up to a toast breakfast and morning meds. I am meandering through emails and messages when the oncologist rings at half past ten. Its not “he who made a pact with the devil” but his registrar. She asks me how I am so I tell her I am not training, that exercise makes me piss blood and that I am tired, she takes all of this in her stride and tells me the good news is that my bone scan shows no new cancer and no increase in my existing cancer. She tells me that my PSA is now 0.973. They clearly rounded it up for the results that I got. So in fact I had a drop of 0.027, go me. She returns to the blood in my urine and notes my white blood cell count is good, my platelets are good and my kidney function is good and that as long as I do not get anaemic I should regard blood in my urine as part of having my cancer. Well there is a cheery message, although she did acknowledge that this was not a “nice” thing to have happen. Drink lots of water was her advice. With that said she went ahead and told me she would write me up for another three cycles and ring me again in twelve weeks. So basically the logic in the arithmetic is that I’m fine as can be, therefore the rest is in my head. I shall attend to my headology in due course.

After the call I renew my Rentokill insurance on the house, discontinue the mail redirection from my sisters old address and have a post oncology review doughnut and herb tea. I turn my attention to advertising my book, I have no idea how to do this so review my resources adn my options. I can pay the people who published my book a wodge of money to put it on more platforms, but that is costly, or I can put something on my YouTube channel and perhaps circulate a post on LinkedIn. I decide to post on LinkedIn to my network, a meagre 200 or so people. I’ve not posted before so its a bit of an adventure and feels narcissistic. As I am doing this the hospital pharmacy tells me I can pick up my next cycles of chemo from them on Monday afternoon, and as I finish replying to them I get my first ever “thumbs up” on LinkedIn.

Emboldened by this experience I checkout my YouTube channel that currently only has some restricted videos on it. I check the sound quality on my laptop as I explore making a video to upload. The sound is really poor so I hunt the internet for an affordable microphone to use. Not surprisingly I find one on Amazon, so I order it. It should be with me tomorrow afternoon, so I might be uploading by the evening. In the meantime my partner returns from seeing her mother and we sit down to an early tea before she has her singing lesson tonight.

Tonight there might be football and a bit more of Bodies, but I need to rest before a busy weekend ahead when my youngest daughter, her partner and my grandson visit.

Wednesday and I am awake quite early as I am taking my partner to the clinic in the centre of town later. Before I can get out of bed my partner brings me hot water and marmalade toast. While I nibble this I sort out my cyber messages and litter. Of course I check to see if my book is still on Amazon, of course it is but it taking a while to get used to the idea that bits of me are out there. I get up and get ready to be my partners chauffeur. Last night I did my navigator researcher and had todays route planned in my head. On the dot of ten o’clock we drive off to the clinic.

The clinic is in an inaccessible part of town with extremely poor parking so the plan is for me to drop my partner off and then find somewhere to park. The plan goes well, I’m good at having maps in my head so I was able to get us straight there without a hitch. I drop my partner off and then retreat to a far off Holiday Inn car park. Rather than sit like some sad person in the car park I went for a short walk to where I thought a Costa was. Alas it has fallen by the wayside like so many cafes in town. I walk back to the car and as I arrive my partner calls me serendipitously to say she is done. I pick her up and we drive to our favourite garden centre café for lunch.

Once home I strip off the fleece lined trousers that are boiling my legs and take my vitals before taking up my place on the sofa to draft the blog, during which I nap heavily. My very berry herb tea arrives and I have a celebratory pot while I draft on my laptop. I am apparently tired as I keep napping, I am hoping to watch a football match tonight but I’ve no idea if I will fall asleep or not.

I find that I have managed to do the next Tesco order, read my poetry book in the post excitement light of day and send a couple of messages to friends. By evening time pizza has been eaten, football kept an eye on and the worst Sandra Bullock film I’ve ever seen played out. I am distracted by the fact that tomorrow is my oncology review. I have a letter saying my appointment is at 10:20, but since the letter I have had texts and emails saying I should expect my call between 9:20 and 11:20. Once again the patient has to accommodate the physician not the other way round. How inconvenient it must be that people get ill and stop doctors doing what they want to do, presumably marine biology or something less aggravating than humans. I should get the results of my bone scan, apart from that I’ve no idea what will happen when I tell them that I’ve stopped training because it makes me piss blood, that my weight has gone up and I have lost my fitness. Everything they use to judge my wellness, e’g the arithmetic of the bloods and vitals are all good, so my guess is they will just give me another three cycles of chemo and tell me to fuck off for three months and to wait for another telephone call. And with that cheery thought I take my meds and go to bed.

Tuesday its book day, I do hope I am not getting myself over excited, but time will tell. I get through my cyber checks and doing my vitals before getting up for breakfast. I am starting to feel better from my cold but intend to take it easy this morning. Post breakfast I set about the task of re-editing the next poetry collection. It is a long and tedious job as I have to go through them all line by line. All the time I keep my eye on my Amazon account to see if my books are out for delivery. A friend sends me a picture of the book as it has arrived with her. Her comment is that it is thin. I become anxious.

I stop for lunch with my partner and do the days crosswords and chat to my partner about the hurdles to providing full time care for my partners mother. My partner returns to work and I put my now dry washing away and return to editing the poetry. At last I get the message that my books are out for delivery between 6pm and 8pm. I put the bins out for tomorrow and return to the editing. I start to read some of my early poems, it is difficult stuff to read and I return to editing the next collection. By tea time I can edit no more and start to draft the blog while my partner and her brother speak to the carer in Greece about cover for her mothers care. It is a sensitive juggle that is being done. In the mist of this my eldest daughter posts a letter for me and I returns with goodies for me to nibble as I continue to draft the bog. I am running out of spoons and I am getting twitchy about the book.

I have taken more photos of the flowers that are coming out in the garden and I get the sense that my garden is galloping ahead of me. All the bulbs in the garden are doing their thing, which I am grateful for at the moment.

In the midst of this day my partner gets a call to offer her an earlier appointment for her already booked appointment at the clinic, so tomorrow there is some driving to be done and another issue to be dealt with. For now though I look forward to the evening and the eventual arrival of my books. Beyond that I cannot think clearly at the moment.

With so much going on my partner and I decide on a takeaway tea, so I order our usual Indian and we settle down to wait for it. Before the food arrives Amazon deliver my package of books. I open it up tentatively and then suddenly I am holding onto copies of my book. My book has become a reality and it feels a whole mixture of thing, but mostly relief that it has actually happened. I think it is going to take a bit of time to sink before I can move on to actually getting the book on as many platforms as possible. For now I smile and prepare to take my night meds and go to bed a published poet having watched some episodes of Bodies.

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.