Saturday and I wake up slightly later due to my late night last waiting for my blood results. I am still stunned by the fact that they were all in the green zone. Not a single test was out of the normal range and my PSA has edge down again. I’ve checked back and I’ve never had an all green set of results before so I make no apology for putting them up here once again.

My partner brings me a hot water and we chat about the results and how I am. I check to see if my book has actually arrived on Amazon, but it hasn’t and I doubt it will between now and Monday at least. We decide to go for breakfast at one of our favourite garden centres.

Strangely the garden centre is devoid of plants but the restaurant is open. Our tables next to a family group who have come out early for a Prosecco breakfast. I opt for eggs royal and a berry tea. My partner and I have more time to chat and review where we are. I am afraid I am becoming boring about the book but just want to get it done and see the real thing in my hand, until then it does not seem real. Once it becomes real, if it does, then I can push the go button on at least another two or three collections. My partner also has irons in the fire that will effect our future and we chat that through as well. We leave the garden centre and drive to another where we can buy fresh meat and vegetables. Its been a successful morning so on the way home we drop into yet another garden centre café for hot chocolate and toasted tea cakes. More chat and planning time. So after a prolonged jaunt I drive us home where I settle down into one of my regular Saturday tasks, namely filling my drugs wallets for the next two weeks.

I get into an afternoon of rugby until my eldest daughter has a problem with the printer. It means firing up the main PC and doing checks on the printer and seeing what is going on. It takes a while to run through the possibilities it eventually I track it down to a faulty cartridge. I pop a new one in and bingo the printer returns to working order. In test printing a document I use the first document in a folder called “blog”. It is dated 1st January 2020, which is just a few days before I finished the cycle of my first bout of chemo therapy. I read it and realise how difficult that time was and how lucky I am to be here four years on. The issues of survival are the same but now they are more nuanced and subtle, a different kind of grind, it is shift from the hope of cure to containment, palliative care and the struggle for the best possible for as long as possible. I add my four year old blog as a reminder to all of where I was four years ago.

So this is a new year.2020, the roaring 20s is what everyone seems to be calling them. I wonder where they get such fanciful ideas. I woke up feeling still 2019 and still with cancer. I’ve not made New Year resolutions but will attempt to make some life style changes. A few diet changes, more fruit, protein and less carbohydrates, certainly no sweets or sugary things. More of the things that give me magnesium like avocados and nuts. Of course I will keep taking my drugs and making sure I get my B12 shots on a regular basis. More exercise is going to be a priority when I can. I need to keep pumping the blood round and making the heart and bones working. I need to combat the weight gain, by exercising on a balanced diet.
 Finally I need to learn patience. I’ve no idea whether or if my nails will grow normally again, I have to wait. I have no idea if my beard will grow back, I just have to wait. I have no idea if my hair will grow back, I just have to wait. I have no idea if I will get my sense of taste back, or lose the metallic taste, I just have to wait. I do not know if I will stop getting cramp in my calves, will just have to wait. I’ve no idea if I will get my strength back, but I can work on that.  I have no idea if I will completely lose the numbness in my fingers, I will just have to wait. I have no idea how my body will continue to respond to being stripped of testosterone, I will just have to wait. I have no idea if I will get to be able to sleep for more than three hours before needing to empty my bladder, I will just have to wait. All this and I have not yet reached the end of cycle 6, I’ve still got another 5 days to go before I have come to the end of the chemotherapy. I have no idea how long the cumulative effects of being poisoned since the 3rd of September 2019 will last. All I can do is wait. I’ve no idea if how I feel about being a sexless fat semi male is going to change or whether I will continue to avoid mirrors, dislike the feel of my own body and think I smell of chemotherapy. All I can do is work when I can, be scanned when I am told to, give blood samples when I’m told to, attend oncology appointments when I am summoned and pretend that it’s possible to live a life with some sort of meaning, efficacy, and contribution to make. It becomes an “as if” life. I shall live “as if” it is all possible while knowing that I live on an island with the sea of the real world lapping or storming around me. The direction is to keep putting things in order for the family, doing the right things, staying focussed and under no circumstances buckle. So here I come into 2020, waiting, learning patience and waging my own internal war.
As for the practical things of the day. I did my claws, visited my partner’s brother to deliver his CP invitation and cooked a curry. We also ordered food to be delivered tomorrow at 8:30. Tonight I watch football, write the blog and plan my day as my partner returns to work tomorrow. So tomorrow I fix the direction and focus on the life in hand.”

Its been a grind and here I am in my second bout of chemo, a different kind of chemo that is less toxic but more insidious and not time limited. It will go on being given to me as long my body will tolerate it. As I say it’s side effects are more subtle and has me juggling my energy spoons each day. I think on balance my “as if life” has more made me change my expectations of what I can possibly achieve.

I go into the evening hoping for a smooth run through to an early night and a good nights sleep. I need to renew some of my “2020 vows” to learn patience and to keep to the things that got me this far. The difference is the lack of energy and the greater level of invasion that the cancer has made into me over the last four years. It is all a question of how effectively I can adapt and be creative. So onward to tonight’s chemo, sleep, time to come and, under no circumstances buckling.

Its jab Friday so I am awake early and going through my cyber routine early. There in my emails I find the final version of my book cover. I still do not really believe that this is going to happen. The small change that I asked for is there. The inclusion of “So Far” is, I think, me trying to instil hope and to carry the fight on. However I am happy with it and reply to the team telling them that this is okay. I will not hear back till at least early evening given the time difference.

I have no time for breakfast only time to wash down my morning meds and fish out a mask to wear in the GP surgery. The stroll down to the GPs was in bright sunshine and it was noticeable how many people said good morning. Clearly there is a sunshine effect going on, either that or I look like I am likely to kill people. The GP surgery is half full and no one else but me is wearing a mask. Their funeral is what I think. I am called in quickly to the usual nurse, who is very quick, efficient and best of all painless. Her with her skill and me with my good veins are a good team. She notes that the surgery is monitoring my apixaban so she takes double the usual amount. I am out in the twinkling of an eye, taking my mask off as I go. My first thought is to see if the village café is open in order to have breakfast, sadly it is not so I get a paper and head for home, where I whip up and egg sandwich and a fresh herb tea. My run of form on the crosswords holds up and I dash through my usual two and then pause. The meters get read and Mondays Tesco order gets booked and partially done, busy me, I wonder what I am avoiding.

I retreat to the bedroom where I instruct Alexa to play me meditation music while I do my vitals. They come out all good so the first part of todays arithmetic is a positive. I find a home on the book shelves for my Penguin Modern Poets collection and then do the recycling and clear the kitchen. Time then for lunch and a bit of a breather. As I sit sipping soup I continue to watch Ashoka, another Star Wars spin off. By the end of the week I will have done the Mandalorian, Boba Fett and Ashoka. I’m beginning to believe that all the technology actually exists but I draw the line at star whales. After a bit of a binge watch I make the effort and go into the garden and refill the bird and squirrel feeders, I also re-site the garden camera as a hole has appeared at the front of one of the sheds. We have either got mice, miniature badgers or, as I think more likely, rats. With the wild life catered for I get into my training gear and head for the garage to train for half an hour. I try to start out a bit speedier than of late and then keep it going for as long as I can. At the end of the session I am pleased as I have cracked the 6 kilometre mark and he 400+ calories goal. This is a “Go me” moment.

Back in the lounge I record my session and sit for a while recovering adn checking my fitness tracker. I’ve got 173 fitness points, the average required to live longer is 100, so I’m pleased again, more arithmetic that’s in the right direction for survival for longer. Once out of my training gear and into my “slob about” ensemble I recline on the sofa and draft the blog. The is food to eat, a football match to watch, a publishing website to monitor and the wait for my blood results to do yet, Jab Fridays are always long and full of anxiety. To me relief there was no blood in my urine after training, and if that stays the same it will be a good day.

By late night there is no sign of my book but have now got a Kindle Direct Account, and payment and tax arrangements in place, it goes with the account number. All I can do is wait for my book to appear either on Amazon or on my “cyber account book shelf”. I doubt its going to happen tonight and as its Friday I very much doubt I’ll see anything until Monday. So I drink alcohol free rum and cokes, down my night meds, watch the final episode of Ashoka and wait for my bloods to come through. All I want to know is my PSA and my eGFR and then I shall head for bed.

My blood results come in and I caste them up. I am astounded everything is in the normal range and my PSA has dropped again to 1. I’ve never had a set of bloods that have been so normal. Like I say I am astounded, but go me. This is my incentive to continue to train and fight. The arithmetic is good.

Thursday I wake with a slightly off colour gut, the outcome of yesterdays very lovely meal and a brandy. However I have time to run through my cyber routines and to check my vitals (all good), and, as I have my laptop at hand from last night’s streaming in bed, I check my email that contains my first mock ups of my book cover. These are exciting times but I am approaching them with some anxiety as I am a novice at all this. I’m never quite sure if this is how it is supposed to be or I am being rooked in some way.

I down load the mock ups and consider them and try to come to a decision. In the end I select one but decide for the sub tittle of the collection to be included on the front cover. I email the team with my observations and requests. I include my mock ups below for interest but am not sure what the actual end product is going to look like.

My preference is for Mock up 1 with some minor additions. As I say seeing these has made me feel quite weird at the thought the poetry project is actually happen after all these years. I am itchy now to see this through so I can get on with my further collections.

I eventually get up and make my breakfast and settle down to plan the day and see what I wanted to do. I had not been doing this for long when I am surprised by the postman bearing a parcel for me. He explains I have to sign for it as its a special delivery. Taking the shoe boxed size parcel from him I am taken aback by the weight of it. This parcel is well taped and it takes time to get through the gaffer tape and find the contents. On opening the box he content is revealed, it is the complete set of the first Penguin Modern Poets series, all 27 volumes. I am truly surprised that it has arrived so quickly and very happy to have them. These volumes were big in my life between when I was a late teenager through my early twenties. I eagerly look at them and note the familiar names and those that I had forgotten or never known.

By lunchtime I have finished watching The Book of Boba Fett and over lunch I find myself watching the COVID enquiry in Scotland. The Scottish first minister is on the spot and is actually doing quite well, even explaining how he was able to suddenly find old WhatsApp messages. What is clear is that politicians have more phones than fingers. It also becomes clear that decision making at times is dependant on which side the coin comes down when public compliance is at stake. Especially when your country gets into a football tournament for the first time in twenty years.

The evening hoves into view as my partner finishes work and prepares for her singing lesson this evening. I settle down to read my new old poetry books and watch some TV before an early night again. Out of the blue the final draft of the book arrives and I set about going through it for one last time. I am content and email the team to tell them. I have rested today although I’ve not got out, that will change tomorrow when I have to be at the GP at 9am for a blood test. Tomorrow is one of those blood Fridays where I give blood in the morning and then occupy myself all day until midnight when my results come through. They are anxious days when new arithmetic becomes available upon which my well being strongly depends on. My last few days seem to have been more normal but underlying my days my fear of my cancer spreading continues to invade my being and make me hypervigilant, especially about the state of my gut and bladder. For now its drink a lot of water and then my night time chemo meds and bed. Before I can do this I get a call from the team in America and spend ages sorting out an Amazon KPD account that will enable me to publish on Amazon. The guy at the other end says he has set me up an account and we agree a password, there is lots of numbers and shit that goes on, I almost pull out, but I finish the call. According to the guy by four o’clock tomorrow my book should be available on the Amazon platform. I’m not sure what 4 o’clock it is, ours or Americas. I just have to sit tight and contain my anxieties for twenty four hours or so. Finally I down my meds and go to bed.

Wednesday and I wake to my usual routine of cyber litter, messages and news feed before checking my vitals, once again the arithmetic is good. I get up to make breakfast having got into my training clothes. I am all good intentions this morning as I am dining out this evening to celebrate my partner and my Civil Partnership anniversary. A number of things highjack me during the morning, some of it is just puttering other more self indulgent. I discover that there are 27 volumes of the original Penguin Modern Poets. This is the series I rummage through to find the poem that I put in the blog yesterday and had stayed with me for more than 50 years. I start to buy the odd editions that I do not have and then bingo there is a complete set on ebay. I have no resistance to this. These are all the poets of my youth who were thought of as “Modern”, the poets of my generation and these volumes were meant to make poetry available to the wider populations. Of course some have survived, like Steve Smith, McGough, Ferlinghetti, Ginsberg, William Carlos Williams and several others but others have fallen away but were important in the sixties and seventies. It is poetry that calls to me and which I recognise. Having them all is like finding long lost friends, a reunion of my time gone by.

I fritter time trying to open a pair of watch cuff links but I fail so reject them from tonight’s smart dining outfit. The shower head gets cleaned, I play loo roll fairy and several other boring maintenance tasks get done. Finally I sit and start to draft the blog while my Fitbit recharges. So with earbuds in I finally head for the garage to train, to be followed by some advance preening. In the midst of this comes the news that my new grandson is now teething! Spring has a different edge to it this year. The session on the rower is hard but I am getting a bit fitter. I still cannot get to my usual standard of 6 kilometres but am closer and I burnt a few more calories.

Once out of the garage I record my session and have a shower. I a burst of energy I dress and go to the post of office to send a parcel of goodies to my youngest daughter and then walk down to the village chemist to buy COVID tests as my eldest daughter is not feeling well. Once home its crossword time, which I flash through once again, that’s two days on the trot I not heed the help of google. So I slide into the early evening and dress up to go out to dinner with my partner as we celebrate the fourth anniversary of being a civil partnership.

The meal is delicious and the evening passes quickly so it does not feel like long before we are home. We find our eldest daughter in the lounge watching TV feeling feel sorry for her self and obviously poorly. We retreat to bed and watch the last episode of After the Flood on my laptop before I finish the blog and take my night meds. Its been a full day so tomorrow I rest, at the gym.

Tuesday and I wake to my partner having gone to work so I indulge in watching a selection of Mock The Week “things you wouldn’t hear…”. I finally drag myself away from the phone having checked my messages and cyber litter. Still no book cover yet. I get up, take my morning meds and get myself down to the village shop for a paper and then onto the village café for a bacon and sausage baguette washed down with a hot chocolate. I sit and do the crosswords, today I’m on fire and do not need to google anything. Its a small thing but gives a crumb of comfort that I’m still functioning on some level. On returning home I put the bins outside and settle down to, nothing.

In my state of “nothing” I fall back on reading and start my re-read of The Hitchhikers Guide to the Galaxy. I had forgotten just how good it is and fell right back into the joys of Pan Galactic Gargle Blaster and the immortal words “Don’t Panic”. After a while I go the laptop and star to write a poem. As I went to sleep last night I kept thinking about a poem that I remembered from my youth. It was a poem that contained reference to consonance and assonance not being able to express the experience of a prisoner getting shanked in a prison yard. In my head I had started to compose the poem, knowing that the poem I remembered was both right and wrong in some way. I know I read in the Penguin Modern Poet series published in the late sixties. I read the poem when I was 20 and it has stayed with me ever since, but I can’t remember who wrote it and which edition of the Penguin series it was in.

I draft my poem, eat tea and continue to write the poem and still I am nagged by the remembered poem and my inability to know who wrote it. I finish my verses and then start to draft the blog but I am nagged by not knowing who the poet was who stuck stuff in my head when I was 20. I retrieve my Penguin Modern Poets volumes from my poetry shelves and go through them page by page and then bingo I find the poem. Its a William Wantling poem called Poetry. On reading it I am taken aback by the similarities of the two poems in terms of their basic theme. I put both of them here for anyone who wants to read them.

I am distressed,
By my search,
For a poem once read, 
Indelible on my mind.
It spoke of the redundancy,
Of consonance and assonance.
A Penguin Modern series, 
Of the sixties and seventies. 
A man who wrote of prison, 
The brutality of survival
And the way the blood flowed 
When a man got shanked.
For him that was poetry,
He was wrong, 
For years in the heads 
Of the violent, 
The killers,
The outcasts
There was only fear,
Shame and loss.
When space allowed 
There was wit and desire,
To be better.
I was never a therapist 
More an operational moral philosopher,
Just trying to find out 
How to be a good person.
But the verses were always lodged, 
Ticking away in my mind
That there is something,
Beyond the structure 
And the academic noun.
A depth beyond 
The contrivances and the intricacies. 
I’m running out of time
And have no space for the fripperies,
Or linguistic baubles,
If I am to find 
What lays at the heart 
Of the words that move
The world of being. 
My dandelion clock
Sheds itself
As the wind blows,
And still I seek
The lost poem
And the ones to come. 

									365 23-01-24.
    
 

So today has been a good day, somehow there has been a connection over 55 years and the power of poetry is affirmed. My instinct to write seems to have been vindicated. What I find interesting is that Wantling and I seem to have found the same difficulty with poetry. I take my night meds, washed down with a 0% rum and coke and go to bed feeling relieved in a strange affirming way.

Monday and I wake feeling quiet refreshed and laid back. My partner brings me my first hot water of the day and I check my cyber gadget for messages, mail and litter. I then check the BBC news and weather forecast, watch a couple of amusing slots on my news feed and take my vitals. Having dawdled a bit I pick up a message from a friend with a picture, her sewage pipe has backed up and overflowed into the garden. That is, as she pointed out a truly crap way to start the day. I get up feeling lucky and tuck into honied toast and herbal tea. Its then that I realise that some thing is missing in my life. My green house isn’t there in the garden! Bloody storm Isha has nicked my greenhouse!

I finish my breakfast, pull on my snow boots and slug down the garden. And there is my green house laying on its side hiding behind the Shed. I am relieved, I had fantasies of it going Dorothy like on a tornado to some far off garden and wreaking havoc on the way. It took two hours or more to clear away the scatter crap and to bring the green house, who is now called Dorothy after her little windy trip, back to the vertical and standing in its allotted space. Dorothy has a broken joint that I mend with super glue and then I contemplate how to protect poor Dorothy from further weather driven escapades. Storm Jocelyn is on the way I find some tent pegs and drive several in around the frame of Dorothy and lash her to them, like Ulysses lashed to a mast to avoid running aground after hearing the Sirens sing. With Dorothy firmly anchored I replace her internal shelves and bits and bobs, finally zipping her up against the coming inclement weather. My efforts have exhausted me and I am glad of the bacon sandwich my partner makes me.

I have brought the garden camera in and start to review its contents. Its all squirrels and wood pidgeons except the section where it has captured the team felling our trees before Christmas, it takes a long time to go through and it has made me forget that I was going to put a crockpot meal on for tonight. I finish up the camera and go to the kitchen and proceed to make my famous one pot, a chicken and chorizo dish flavoured with herbs and smoky pimento. It is a tasty winter meal especially when made with red wine and a dash of brandy. With the stew bubbling nicely, I clear the kitchen and move the car off the drive ready for the Tesco delivery.

As the stew bubbles I start to draft the blog in anticipation of both the food and the Tesco delivery. With those out of the way I can get on with BBC 2’s quiz night, or as I think of it, revealing my ignorance night. In fairness I get some of the general knowledge on Mastermind, less on University Challenge but any correct answer on Just Connect raises a whoop of joy. That does not happen often, perhaps once a series. My aim is for another early night and a tomorrow when I can train and get out and about a bit, even if it is only to the shop for a paper and the café for breakfast. I take my night chemo meds and go to bed.

Sunday and I wake after a night of terrible nightmare. I dreamt of the house being invaded by men demanding that they do work on the house, a real bunch of vagabond brigands. I stood up to them adn told them to fuck off and threw them out and off the property but not before they had damaged the front door and porch. Eventually they left in a trotting cart. It left me distressed and I woke shaken. I think it was a cancer dream, the symbolism of being invaded and being made fearful all felt very cancerous to me. I got up cleared the kitchen put out the recycling, half checking the door and porch as I did so, and then retuned to bed with warm drinks for my partner and I.

After sharing my nightmare we got up for breakfast and face timed our youngest daughter. My partner went to the gym, my eldest daughter to a friends to work. I spent time reading a poem a member of the poetry stanza has sent me and then replying to his accompanying email. Alone in the house I start an early draft of the blog as I gather up my courage to go to the garage to train, spurred on by the horrific fact that I weighed in at 100 kilos this morning. I am appalled at myself, that I have let my fear do this to me.

I go to the garage and strap myself into the rower. I set the session for thirty minutes, set my activity monitor going and set off. I am working at about 75% of my capacity, its hard but I push through. I can hear the wind howling outside as the latest storm comes in. I make the end of the session and I am just glad to get there.

Having finished the session I record it in my journal and then head for the garden where I wrestle the cover back on the garden swing seat as the wind whips up. Back indoors I change out of my training kit and get a drink and a sandwich after going to the bathroom and being relieved that I have not passed blood. I settle into watching a rugby match as the house around me rattles in the ever increasing wind. My partner has retuned from the gym and quietly stitches together the grandson’s cardigan as I continue to draft the blog to the background of rugby. The evening meal is taken as a family and then we watch Vera while the storm intensified, rattling the house. I take my meds, finish off the blog and go to my bed hoping that the remaining items required to see my book come into being arrive soon.

Saturday and I wake after a reasonable nights sleep. Its chilly and my partner and I sip hot drinks and chat until we have a plan for the day. Bacon sandwiches for breakfast before some serious puttering to get the house straight. By lunchtime I am ready for the afternoons poetry stanza so I indulge in a football match. With the game almost over I settle in front of the PC and sign into the poetry stanza. For three hours I listen to poetry being read, discussed and explained and take my turn to make observations and share my ideas. This time I had not offered one of my own poems but I had shared a visual poem before the meeting which people said they liked and found funny, which I am not sure I intended it to be.

After the stanza I watch rugby, eat tea and search for an evening entertainment aware that I am becoming the owner of a headache. It ends in paracetamol, night meds and a late bed time.

Another Friday arrives, I wake early this morning and check my cyber messages and litter before checking my vitals (all good) and then doing the Tesco order for Monday. Once up I make breakfast and settle down for the mornings task of proof reading the final draft of the poetry collection. Its a slow and painful task, I keep tripping over my dyslexia and the slowing side effects of my chemo. I finally finish after lunch time and put all my feedback into a document that I send to the team in Florida.

I am watching the World Indoor Bowls championships when I get an email from the boo project team ask when they can ring me to discuss the next phase. While I am trying to work out the time difference I get a call from the commercial branch of the team who talk me through the details of ISBN numbers and book formats. Of course there is an additional cost, just new there would be, but at the end I am expecting a handful of copies at some point and for it to be available on Amazon at some point in the near future although I have yet to see the final cover. As far as I am concerned I have done all I can and just want to see the final product now. Depending on how it looks will depend on whether I use Amazon again. As usual I have a feeling that I am being ripped off, but we shall see.

With the business done I return to the bowls but Amazon deliver the folders I have been waiting for so I set about printing out the poems that have been submitted for Saturdays poetry stanza meeting. The evening arrives and so does the decision to eat take away while watching a rugby match. It ends and I draft the blog with the news on in the background spilling doom and gloom into the room. I’m tired like the rest of the household so I shall wash my night meds down with alcohol free rum and coke and have an early night, perhaps listen to some more Clive James.

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.