This is terror Tuesday. I wake up feeling knocked about and sore from yesterdays injection. I feel groggy and fatigued but mostly sore. I wonder if I am talking myself into this with a negative internal dialogue, but I feel crap against an internal dialogue that I can make more positive. Like in rain I know the sun will shine again, so I keep these thoughts in mind and tell myself that any small step I can make is a contribution to feeling better.

My partner brings me a coffee and I slowly check my messages, emails, and cyber litter. By 10 o’clock I get up and have muesli and coffee taking my morning meds as I do so. I wonder about taking more paracetamol, I am not keen but I know I shall probably do so at some point. I send my poem to the poetry Stanza for the coming meeting on Saturday, as I do I note that on Zoom meeting sessions I tend to send less personal poems and more humorous or trivial content poems. There is something about sharing the more “tricky” poems face to face which feels more appropriate.

By noon I am flagging again and cave in and take paracetamol. If only I could get moving, its a real Catch 22. So paracetamol, take my vitals and then try to find a way to rest restoratively. I end up listening to more Infinite Monkey Cage while laying down. Mid afternoon I try to rouse myself, clear the kitchen, put the bin out and take in a delivery, which includes my new beanie and fleece lined trousers. I am flagging but a new email comes in from the tax company that are working on my sisters estate. There are several things I do not understand and spend ages drafting a reply to try and clarify some points. No sooner than I have pressed the go key another email comes in from the solicitors which needs time to consider. We appear to have reached an impasse with HMRC despite having paid the inheritance tax, with solicitors advising to wait for the tax folk to clear everything.

Evening rolls up and my partner makes tea and we eat while I draft the blog and wait for the Great British Bake Off. I am still feeling like I have been run over by a bus and have a simple plan: take my meds and go to bed. It is definitely a case of eat, sleep, repeat. Right now my spoon economy is minimal, all I can do is hang on in there and trust my body will recover as it has done so many times before. Its just the nature of the cycle.

Jab Monday and I am awake at 7:30 listening to my eldest daughter getting ready to go to work and my partner snoozing. I get up, make a warm drink for my partner and get myself ready for my walk to the GP surgery. Just time for a coffee adn morning meds and then I am walking in the morning air that is breezy and damp. On my arrival at the surgery I fish out mask from the depths of a fluffy pocket and book myself in, take a seat and wait. Within moments I am called in to the clinic room, the upside of going for an early appointment time. I hand over the injection box to the nurse who puts the impedimenta together while I adjust my clothing to give her access to the injection site. The drug goes in relatively easy, it is viscous and bulky adn takes time to get it all in. Once done I check my next appointment time and go on my way.

On my way home I pick up a paper so I can do the crosswords as I have more coffee and toast. I consume these as I watch the government reshuffle on TV in a kind of fascination, like a snake watching a mongoose. I am surprised as the announcement is made that David, pig botherer, Cameroon, is appointed as Foreign Secretary. After the initial shock there are acres of fill in TV full of people making up opinions and waffle to fill in time before anything else happens. My partner goes off with her brother to see their mother who has returned from her hospital visit last night. I start to do my own admin by chasing up solicitors, writing letters and tidying up the domestic environment in preparation for the coming Tesco delivery.

By lunchtime I am tired and feeling sore at my injection site. I make myself soup and move the car off the drive to leave rom for the Tesco delivery. I listen to another episode of the Infinite Monkey Cage. My partner returns and we while time away until Tesco deliver. There is a spurt of unpacking and squirrelling away the food. I return to the sofa as I feel my post injection “withdrawing junkie” state coming on. No matter how warm the house is I shiver on these injection days. All I can do is take paracetamol, grit my teeth adn take myself to bed as early as I can bear to try and sleep through the worst of the “withdrawal”. My evening then is made up of eating and then trying to be as mindless as possible till I take my night meds and fight to sleep through. These days are the low points as two 28 day cycles collide, however I will stand, hold my ground and come through to some equilibrium.

Saturday and a good as my new grandson arrives with his parents. My partner has gone off to have her hair done and I have a list of food to buy from the local garden centre. So having done my early morning cyber litter checks and viewed messages I get up, take my meds and drive off to shop. I a have not been back long when my youngest daughter arrives with her son and partner. He is a delight and such a contented young person. The family sits down to lunch and of course play with the new grandson. It is an easy afternoon of relaxing and catching up with, of course, the new family member at the heart of everything. The family sit down to a roast dinner and pudding before settling down to watch Strictly together. Of course the newest family member and is parents drift off to bed relatively early and others duly follow leaving me to watch football highlights and finally set Daisy dishwasher going and down my meds before going to bed. Its been a good family day.

Sunday I wake early and find the family up and about and we are soon gathered around the table having breakfast. My day starts with paracetamol added to my usual morning meds in preparation for tomorrow’s 28 day injection. The morning is spent playing with the young grandson and chatting to the parents. He is an extremely calm and chatty young baby and clearly very interested in his environment and instigates interaction a great deal. At lunchtime they pack all the gadgetry they travel with leave for home home. Its been lovely to see them and I look forward to Christmas and the experience of seeing the new boy experience his first Christmas tree.

I settle down to start the blog and then I watch a rugby match. My partner gets a telephone call to say her mother has been taken to hospital for her bloods to be checked. There follows a long period of waiting and conversations with the carer with my partners mother. Not until 7:30 pm does she see a doctor and we have a conversation with the doctor about whether she is going to stay in or not.

It is a long evening as we wait to know for sure whether my partners mother is being sent home. I watch TV and draft the blog as we wait. It is a long evening. Tomorrow I am up early as it is injection Monday. Not my favourite day of the month so I eat chocolate, drink diet coke and wait to see how this day ends.

Friday was a very slow start, as I check my cyber litter and messages. Then its on to organising the next Tesco order and getting to grips with putting in place arrangements to go north to see my mentor and friends. I dally so long that just as I clamber out of bed my partner brings me a bacon sandwich. There is post already and amongst it the HMRC letter we were waiting for to move my sisters estate tax moving on. So there is some admin to be done. I have no book to hand so listen to another episode of The Infinite Monkey Cage. My partner goes off to see her physio and I set about Hoovering the house through prior to my youngest daughter, partner and their new young son coming tomorrow. I’m impressed with our version of a Hoover in that I had never found one that was capable of rolling up a pair of nickers on the front roller, but this one achieved this with ease. So after freeing up the roller I continued the run through the house and cleared the kitchen.

By the time I had finished I was ready for another episode of The Infinite Monkey Cage, which kept me amused while I recovered from the house Hoovering. I was beginning to drift when I decided to take my vitals and then change for a short row. I am trying to build up my PAI points and also lay in some resilience to Mondays 28 day injection. Yep, its that time of month again, so I will be checking my paracetamol stock as well. The garage is chilly so I strap in quick to he rower and getting going speedily, again giving it a bit of “vim” and hoping to meet my usual standard. It goes well and I achieve my goals.

I return to the sofa and record my session. I am pleased to find I have accrued 175 PAI points and my fitness age has dropped to 52. So all in all I am quite pleased with this weeks efforts. The rest of my day sinks into evening where I eat tea and then settle down to an evening of TV as I switch off and try to maintain as many spoons as possible in anticipation of tomorrows guests. Ultimately there will be night meds and bed.

Thursday and I wake early and get brought coffee and toast in bed, which I am thankful for. Once again I check my cyber litter and other bits on my phone. Once up I am not quite sure what I want to be doing, I feel listless. I do odd chores like emptying the waste paper baskets in the house and try to settle. In the end I decide to give Oscar and Lucinda another go. I try, really try to appreciate the quality of writing, the detail, the fine observation and the delicacy of the way the two main characters stories develop before they meet. Its no good, I go to the end of the book and start to read it backwards, which strangely makes it marginally better. By lunchtime have given up and own up to the friend who sent it to me that I can no longer go on with it. In fact my summary was ” I’d sum it up as addicted gambling priest meets too tightly wrapped feminist factory owner who both fuck their lives up and of course their friends and innocent bystanders. Just another couple of personality disordered twats really.”

My partner and I go for a walk to the village pharmacist to pick up prescriptions, my partner’s is ready but I will have to return tomorrow to collect mine. We slip into the co-op next door where I pick up cash and we add some food to the basket. Back home I make myself soup and start the cross words. A friend rings who I have not talked to for a while adn we compare notes about family, Christmas and how we are. My friend goes off to continue her Christmas organising and I return to my soup and crosswords. Crosswords done I start to investigate Christmas and my timetable running up to it. There are things I want to fit in like a visit to my mentor which I can combine with a Christmas shopping trip, December is already looking cramped with the the various things in the diary, my chemo reviews and injections. I listen to an Infinite Monkey Cage and then decide to train. It will be a 45 minute session with a bit more “vim” to it that the gentle 60 minutes previously that did not gain me the necessary PAI points to get me to a 100 for the day. I get my training kit on and make my way to the garage, strap onto the rower and get going in the chilly atmosphere.

I put some effort into the session with a very pleasing result, for the first time in a long time I get past the 10,000 meter mark and burn over 650 calories in the 45 minute time slot. This is more like it, I now need to keep this up consistently. I go the sofa and record the session in my journal before getting out of my kit.

Returning to the sofa I start to draft the blog and a little later eat tea while watching the early European football match. I am finding that a modicum of chocolate settles my stomach as I think an unsettled gut is one of my chemo drugs side effects. My partner goes off to the office to do her singing lesson and I continue to draft the blog to the background of football. I am hoping that my good session sets me up for a spoonful day tomorrow. I would just like a day when I wake up feeling like I have energy enough to get out and about and do some of the normal things. For this evening I shall content myself with easing towards my bedtime with its night meds and rituals.

Wednesday and I start Cycle six of my chemo, the treatment that just rolls on as long as the arithmetic is right, and as my arithmetic appears to be good, it rolls on. My partner brings me coffee in bed before going to work and I check my cyber litter. Nothing in the cyber bag of stuff is of any use, comfort or interest to to me so I get up and do a toast and jam breakfast before showering. It is a spoon costly exercise, even more so when as I am dripping with exotic foam I realise I have not put the towels near the bath. For once I have not carried out my pre shower rituals properly and I am left to shake myself like a dog and and skip naked out of the bath to reach my towels. There follows the usual rub down and then the towel wrapped trip to he bedroom to blow dry my hair. With flowing locks I dress and drive to meet a friend to have coffee.

I arrive and clearly I am not looking too good as my friend says its okay if I am not up to it but I say I am and she drives me to a local National Trust park to have coffee. We actually tuck into eggs Royal and Benedict with hot chocolate for me and begin our conversation. It goes on thorough many topics including my growing aversion to people and the vacuous noise they make, realising of course that anyone listening to my own conversation may deem if “vacuous noise”. Undeterred I continue with our conversation. My friend is an academic and philosopher who is the person who feeds me books so of course we discuss Oscar and Lucinda, which is her latest gift. We move onto Glass Churches, other books, how we are and favourite idea from favourite television series, including of course, The Good Place. By then its time for more hot chocolate and cherry cake to fuel us through more idle conversation through family, retirement plans, David Sedaris and other ideas about Therapeutic Communities as Operational Moral Philosophy and University degree ceremonies. The later yielding a story that it was Margret Thatcher who stopped the Open University from being scrapped when there was strong pressure from the conservative party to scrap it when they were in power. Bit of a difficult one to swallow that but she was clearly not all bad. Lots of miners children got out from under via the Open University, as did many others.

We had a quick look around one of the craft shops and then at “death corner|” of the garden centre to see if there are any likely candidates for saving. There were not so we left and I was driven back to my friends house. We said our farewells and I drove home. The evening was already closing in and so I settled down on the sofa and began to draft the blog. I have noticed that now when I spend anytime talking to people my voice disappears. It is almost as if its lack of use gives it a limited usage time. It goes hoarse and I cough as if an irritated throat has had enough and in a sense just says, in its own way, enough is enough.

Whilst siting drafting the blog my partner returns from work and after making me a coffee she checks her car insurance and asks if I have points on my driving license. I do not know, I know I did a motorway speed course, which was on line during or just after COVID, as for actual points I have no idea. Intrigued I Google how to check and then proceed to follow the instructions. I whoop with joy as his majesty’s official web site tells me I have no points, or as I think of it, I still have 12 to spend, which my partner points out is probably not the way to view it. I return to the blog.

As I have dined so well already today I shall be making soup later when my partner goes out for a meal and my daughter goes of to the fare with a friend. My evening will be football, I have nothing left in the spoon locker to do anything more clever today, certainly not got the energy to train. I am hoping over the next couple of days to begin the actual work on preparing my self published poetry collections. In the meantime I shall continue with Cycle 6 and next Mondays 28 day injection. Night meds and bed take me to the end of the day.

Tuesday, this is a good Tuesday possibly the best. It coincides with the last day of Cycle 5 of my Chemo. Having checked my cyber litter and my accounts, drunk a coffee brought to me by my partner before she went off to see her mother, I get up and do my vitals, the last in this cycle. Having dressed I make my breakfast and then start my drug rituals of ordering next months supply and of filling my drugs wallets for the next two weeks. Its time consuming and fiddley but it keeps me straight. Its one of my mildly obsessive rituals but is part of my external structure that enables me to function on automatic when I am not at my best. I note it is the state opening of parliament as my TV gets filled with people in fairy tale carriages and dressed up in robes and waving wands of state. Some woman called Black Rod bangs on doors and people troop from one carpet colour to another to hear a King read a fantasy to them. So this is democracy, I go and put my washing in and then set about clearing the kitchen and wrestling the pile of cardboard boxes in the hall, the detritus of the shoe chaos campaign. By two o’clock I’ve done lunch, washing is on the line and I am wondering at what point I am going to train. I have to train today as I have fallen below the magical 100 PAI points I need to stay fit. It feels like I have spent a lot spoons already this morning but need at least another 16 PAI points to get to the required 100. The arrives and with it a single “bloods” form to take with me when I get my next bloods done on the 24th of November prior to my oncology review on November the 30th.

I spend time reading the Relational Practice Manifesto/ Strategy that has a closing date for comments on the 17th of November. I am in several minds about it. It is a laudable aim to place human relationships at the heart of practice and services. What bothers me that it is not a simple coming together, there is a power dynamic that seems to hold a veto in there somewhere. It seems to me that people blossom when they come together only when they do so freely, not as service provider and user. It is something I will ponder as I row, recalling my own experiences.

I don’t ponder on my row, I just row, but I row for and hour gently except for the last few minutes to get me over the 11,000 metre mark, in fact I get over the aesthetically pleasing 11111 metres and the 700 calorie mark. I am feeling mildly pleased with myself until I check my fitness app that has given me only 9, yes a measly 9 PAI points for my efforts which means I have not reached the 100 required as standard. I am truly pissed off and wonder about the efficacy of my Fitbit and the fitness app I am using.

Stamping on my disappointment I go into the now dark garden to gather in my washing, to find the airier is already in use, so I put the recycling bin out to find a rogue pair of shoes not in the new shoe rack, and so the chaos starts again. I bring the Amazon parcels in to the hall I cleared earlier so they do not get damp and then finally I sit down to record my session in my journal and catch up with the drafting of the blog. I shall change into dry clothes and unrepentantly watch football.

Apart from football I manage the Great British Bake Of and a final go at the daft of todays blog. I’m out of spoons now and down my night meds and take Oscar and Lucinda to bed. Its been a long day with what feels like little reward beyond tidying up and maintenance stuff. Tomorrow I’ve a coffee planned with a friend. and of course I start Cycle 6 of my chemo. It is unremitting, unforgiving and relentless, but I stand and my experience across the years is imprescriptible.

Sunday, a day of doing not a lot except for shopping for food, reading and watching a rugby match. Of course eating was in there as was the Strictly results show. My highlight was my weigh in early in the morning, this is one of my self checks, sometime ago I could do some things that would guarantee that I would lose weight. That is not the case any more due to my reduced ability to train hard and the adipose disposing of the chemotherapy I am on. I get myself on the scales and tentatively look down. To my surprise I weigh 96.7 kilos, this is a loss of 1.2 kilo, despite the indulgence in chocolate. So this is always going to be a good Sunday regard of anything else. The evening comes around very quickly as does the 2023 dubbed French file, Wingwomen. Its an experience, if you have two hours you are willing to use, its a very modern and very French film. Ultimately I take my night meds and saunter off to bed clutching my phone and Peter Carey’s Oscar and Lucinda, my latest gift from my book friend who feeds me.

Monday starts early with my partner getting up for work and a little time later she brings me a coffee, by which time I’ve dealt with my cyber litter and I have returned to Oscar and Lucinda. I am beginning to understand that Oscar and Lucinda is a well written and crafted piece of literature but I am already sensing that this is going to be a demanding read. It is full of detail and even though it is written in short bursts I find it a challenge to read. I have breakfast and clear the kitchen as I wait for the final pieces of my shoe organisation project and water butt maintenance scheme to arrive. To while away the time I catch up with the blog and plan my week. As I do all this I listen to the Infinite Monkey Cage with Brian Cox and Robin Ince and remember the famous “blue spot” photograph of the earth, which is the most distance picture of the earth taken. It’s always been a favourite of mine and put things into perspective.

Still waiting for Amazon to arrive I do lunch and go off to the Shed to write letters. The Shed is cold but soon warms up as I get to grips with writing on smaller than usual writing paper. I am good for one letter before I flag, these dips in energy are a real pain. I lock up the Shed and make my way immediately to the post office to send my letter on its way. I linger over the chocolate aisle and pick up a paper, my intention being to settle down to a coffee and the crosswords.

Once home I make my coffee but before I can really get going on the crosswords Amazon deliver my next shoe rack and drain piping. I immediately set about putting the shoe rack together, it goes smoothly as I know what I Am doing and have the right tool and practice to do it quickly. Its not not long before I have the new rack in place, getting rid of the garden shoe chaos.

The light is beginning to fail and its starting to rain but I crack on and use the newly arrived flexible piping to drain the top two sections of the water butt in order to make sure the winter rain does not overflow the gutters. With my two chores done I return to my coffee and crosswords. I am on fire and thrash through the crosswords with no need for Google. As I am on a roll I do some more filing of the papers and photos that came from my sisters house. By the end of my efforts I have everything stowed or filed in folders. I take the one address book from the papers that I recognise as being the most up to date address book my sister had. I am hoping that I can find the addresses of the Scottish branch of the family. Recently I have been toying with the idea of writing to my cousins to get the information I need to complete the details on the family tree. I shall be interested to see if I actually do.

I am just finished with the files and boxes when tea is ready and sit and eat while catching up with the days news only to be interrupted by the arrival of the Tesco delivery. There is toting and squirreling of food in a flurry of activity before I return to the sofa to draft the blog. Tonight is quiz night on BBC 2 so there will be a period of self inflicted ignorance confirmation. From Mastermind to University Challenge then onto Only Connect, by the end my general stupidity is confirmed. I like to think I am just a bit a slow due to age, dyslexia and chemo but I have I sneaky suspicion that a combination of lack of basic education and a brain of full of pixies that are not as quick as synapses may account for my mediocre showing.

As the penultimate day of cycle 5 draws to a close I take my medication, tuck Oscar and Lucinda under my arm and go to bed for an early night. Tomorrow is the last of cycle 5 which leaves me with one more cycle to go before my next oncology review.

Saturday and I wake up knowing my blood results from last night. I tacked them onto yesterdays blog after they were posted after midnight. The headline was the further reduction in my PSA, not by a lot but it is nevertheless a reduction. The rest of the profile is reasonable I am disappointed with the drop in my platelets and rise in Urea, which suggests I am not as hydrated as I should be.

I am usually quite chipper when I get results like this but today not so much. Its difficult to explain but the side effects of this chemo drain me and make me feel a combination of fatigue and listlessness. I find myself feeling quite anxious, so although the arithmetic is good my sense of wellness and ability to do things seem to be impeded.

My partner brings me a coffee while I check my messages, emails and cyber litter. I am still in bed when my partner goes off with a friend to spend the morning having coffee and a catch up chat. I get up and have breakfast and watch a women’s international rugby match, England beat New Zealand to win this years international competition. My day drifts as I watch more stuff, as I feel bereft of spoons. It unusual for me to feel this spoonless this early in the day. I continue to drift on the sofa, half watching more rugby and drafting things on my laptop until my partner returns. We have a light snack and I continue to drift. I notice the bathroom light has once again gone out so I gather myself together to try and rectify the situation.

Bathroom light sorted I return to other things. I check my vitals which are okay and then return to the sofa and TV. Its going to be a night of Strictly and football probably, night meds and bed as soon as possible. Definitely not feeling good. I indulge in chocolate heavily tonight, sometimes I just need the lift.

Friday and I wake knowing my first task of the day is to get to the GP to have my bloods taken. My partner brings me a coffee before I get up and dress and find time to do my first set of vitals for the day. I walk down to the GP equipped with my bloods form but as I enter the reception area I realise I am not wearing a mask. I rummage through my jacket pockets and come up with my “just in case” mask and take a seat. I barely have time to read my book when I am called in. To my delight my veins continue to be cooperative and offer themselves up with no resistance to the needle. In a trice I am done and heading towards the local co-op to get a paper. A few minutes later I am seated in the local village café doing the crosswords and waiting for my full English breakfast and coffee. Its a while since I’ve done this and I am pleased I have made the effort as I tuck into the food and do the crosswords. I realise that I have left my phone at home but despite that I compete both crosswords, go me! Sauntering home I plan my day, which is a mistake really as it means that things can go wrong. As Spike Milligan said “I plan nothing, that way nothing goes wrong”, It is a sunny day but I rest a while on the sofa to start the draft blog and watch the COVID enquiry but find it does not sit on a Friday.

I spend my morning reading Carlo Rovelli’s White Holes, which I finish. He writes delightfully about complex ideas and clearly enjoys the writing. The production of the print in the book is a bit idiosyncratic as there are frequent “i” for “I” and the start of sentences are often lacking a Capital letter but for a dyslexic these things feel normal at some level, it is the ideas that count. So now I have a basic grasp of the idea of black holes bouncing and forming white holes with lower horizons than the original black hole and how the time maybe related to an unbalanced past state to a flow into the current state. All good stuff, it seems to chime in strangely with the ethical philosophy I have been reading of late.

I see the Amazon man deliver and hope it is the next instalment of combating the porch shoe chaos. Before that I have several goes at getting an email with an attachment sent to the lawyers to deal with related to my sisters estate. Gas bills after death, another thing to hand on but I eventually get my email to accept the attachment and it goes off into the ether. Having waved farewell to a gas bill I get to grips with building the new shoe rack for the porch. I get the first four bars into one end and realise that I will knacker my wrists if I persist with this method. The rails are so tight to fit that it will take all my effort and remaining spoons to complete the job, if at all. I seek out my trusty soft headed floor laying hammer and some silicon lubricant and set to work. Once again opposable thumb creature overcomes the environment. I triumph eventually and begin to reorganise shoes and boots until my partner takes pity on me and together with my eldest daughter they sort out the pile of footwear into so some sort of order and cast away those that no longer bring them joy. I return to the blog and and enjoy the transformation.

Its a good job well done. I am out of spoons now and look forward to an easy evening of TV and a meal, perhaps a rugby game. As I had bloods done this morning I might get the results late tonight. I usually stay up to get them but today I am not sure, I am quite anxious about what they will be like. I am five cycles in now and due to start the sixth cycle in five days time, I just hope my PSA has fallen otherwise cycle six will be a waste of time and bad news. The wind will blow again and my dandelion clock become less again.

At midnight the blood results come in. The news is good, my PSA has dropped again. In general the whole profile is good. There is a drop out of the normal range in my platelets but not too far of the normal range. I caste the results up into a grid, update the blog and go to bed.