England win at 4 o’clock in the morning beating Mexico 3-2 with ten men, its my 78th birthday so its a birthday that starts very well. Needless to say I am knackered as I crawl to bed at 4:30 to the sound of the dawn chorus and the sky getting light. I surface about nine o’clock and I am treated to birthday hot water and toast in bed. I have several Happy Birthday messages to reply to as I gradually get myself together. Eventually I get up to my post and a delivery of T shirts. I take my morning meds and get organised for the days heavy slothing and cake eating that waits ahead of me. I intend to do nothing but indulge my inner sloth and revel in the fact that I am alive, vertical and feeL loved and cared about. I also celebrate that I can still create by writing, read and have a garden to tend. As Cicero said what more can a man need or want.
I intend no more for this days blog. I shall meander through this day leisurely until the evening football match between Portugal and Spain and then go to bed a year older and pleased to be so, I have a lot in front of me including a new poetry collection and some leisure time away. There is if course finishing Cycle 9 and doing Cycle 10 to brining this rechallenge to an end. Reach this and then I can rest for a while and recover for the last of summer and, what I am sure is going to be, an Indian autumn.
Sunday and I wake up feeling very chemo’d, fatigued and listless. It is my last day of being 77, new things await me. I get up and have breakfast before my partner goes to see her mother in the care home. I crack on and clear the kitchen and put my washing away. I also sort out my T shirt collection and tidy up my clothes shelves.
I spend time on the garden swing seat reading a new book and generally lazing. I spend a lot of time in the back room reading and resting before finally giving in and watching some tennis. The evening arrives as does an evening meal before watching Norway beat Brazil in the world cup and of course a Tesco delivery. There is more Shades of Blue to watch before the 1am kick off of England v Mexico. However the kick off is delayed by an hour so I slide into my 78th year waiting for the match. My partner goes to bed and I draft the blog waiting for the game. Night meds are done all I need to do is stay awake.
Friday, its chemo rechallenge return day, it the day Cycle 9 starts. I meander through the morning doing breakfast and my morning meds quite early. At some point I end up on the garden swing seat just staring at the sky. I tinker with the the computer and run off theatre tickets for May next year. There is a light lunch and then I prepare my chemo survival bag and include the pastry and kit kats my partner has bought for the occasion. Then its into the chemo routine. Firstly the Uber ride and drop off.
As we walk into the oncology unit we stop to buy fresh strawberries from the hospital fruit and veg stall. I hand in my “dance card” and buy a bottle of water. My partner and I get settled in the waiting area and I whip through the days cross word. To my surprise I am called in on time, I get measured, height and weight, and shown to bay 20 in the chemo suite. So it then begins, the tray of medical goodies are produced, and the hunt for a suitable vein to stick the canula in. One get selected and the needle slide in. My vitals are checked and as always my blood pressure is up as is my heart rate but not enough this time for there to be a check with the on call doctor. My pre meds are pumped in and then there is a 30 minute saline wash through. I get my poetry book out, set my water and nibbles out and put my chair into recliner mode. It’s now a wait before my poison gets pumped into me.
Canula in ready to go
The suite is quiet this afternoon. Note: no aircon.
Settled in, looking relaxed but very not.
Its a strange soft anxiety that arises as I’m being prepared for chemo as I become aware of how odd it is to have needles put into my body and all sorts of liquids being pumped into me. Its not normal and as I edge towards the end of this set of cycles it becomes more and more not normal, which means I am not habituating to the process. It still feels odd. While being “flushed” at the end of the session I chat to the last remaining fellow “poisonee”. She was up at 4am making cakes before her ambulance arrived to bring her to her session. She was done by 1:30pm and ready to go home but here she still is at 5o’clock, her ambulance is taking more than four hours to fetch her. All she wants is to go home to bed, as she has another cake to make tomorrow morning at 4 o’clock. Apparently her chemo and steroids induce insomnia coupled with joint pain, I think I get away quite lightly with my fatigue. We leave the suit together, she in her wheelchair me on unsteady feet. I immediately head for the loo to get comfortable and meet my partner in the waiting room. We head for the hotel across the way where we get an Uber home.
My evening is pizza and football based. I intended to go to bed early but I got caught up in the thriller that was Argentina v Cape Verdi so end up in bed at 2am having had my nightmeds.
Saturday and I surface groggily and let myself come round slowly. I have a hot water and finally get up to make breakfast and watch an early international rugby match. I do a Tesco order and check my messages and newsfeeds having put my washing in. I watch some more rugby and then hang my washing out and take a swing seat break. My partner returns from the garden centre with more plants, lunches and then sets about finding homes for all the new plants. I return to the sofa and begin to draft the days blog. My post chemo fatigue makes drafting or writing anything a hard process, it just takes more effort and things do not flow as usual.
My day continues with more rugby, the retrieval of my washing from the line and then an evening meal while watching the first world cup football match as Canada get beaten by Morocco. As the evening progresses I can feel I am loosing my sense of taste. There is another match to watch and then I can take the last of the additional steroids and go to bed. I’m tired and I can feel the chemo fatigue kicking in.
Thursday, the last day if my Chemo Summer Holiday. I wake early, check the football results, USA beat Bosnia. I fall back asleep till nine o’clock and then get up. I shower as the shower now works again, I think the low water pressure was the result of the heat wave. As I towel myself down I get a call from a friend who is on the way to have a massage. We agree that if there is another heatwave like the last one we will adopt the siesta as a way of life and nap in the middle of the day. We chat for a while and catch up on our news and how our families are doing. At the point where the driving getting tricky we say good bye. I get myself into some new clothes and make myself breakfast. I eat this as I add my chemo steroids to my dosettes and finally take todays meds. By lunch time I am hungry and I am ready to get in the car and be driven to the restaurant for lunch. The place is posh but the food is great, so I indulge in melon and ham to start with followed by the speciality shepherds pie and rounded of with crepes in orange and a liqueur. So what does a speciality cottage pie look like then I hear you ask, well here it is.
Delicious cottage pie.
I do not make a habit of photographing my food but I made an exception for this pie. The large sprig of Rosemary was a surprise. The meal was excellent and a great way to celebrate my birthday early. At the end of the meal the waitress asked if we wanted coffee or any other drinks She looked at me and I said “a decaf black please”, She just looked at me as if I’d said something offensive. My partner introjected with “he means Americano”, at which point the waitress scribbled on her pad and moved on. I wonder how long it will be before the word black disappears from the language. My partner pays the bill and hands over a tip for the waitress before we leave. Its a brief walk to the car and a short journey home.
On arriving home it becomes apparent that the garden guy has arrived and is in the middle of mowing the grass. We chat for a while before I add more support to the sunflowers and then retreat to the sofa and start to draft the blog for the day and let my excellent lunch go down.
Tonight there will be a football match but for now its time to nap. My siesta last a long time and before I know it I am watching Spain play superb football and beating Austria by three goals. All that is left is to watch the current American police drama to the end of series two, take my meds and get to bed. Tomorrow is the end of my Chemo Summer Holiday and it is back to my Chemo rechallenge.
Wednesday and I wake early knowing I have to move the car from the drive as today the tree and hedge folk are coming to give our hedges their annual trim. So by 8 o’clock I am dressed and heading for the car. With the car (Elsie) safely parked up across the road I make breakfast and take my morning meds. My next task is to prepare for my oncology review this afternoon. I have decided that I will go for my 9th cycle, the blood result figures are too good to pass up. The arguments are always about benefit versus Quality of Life and I have reached the conclusion that Quality of Life is a too mercurial notion to base a medical intervention decision on. The trick has been to find a balance between chemo and the fatigue it causes. By reducing the dosage, which appears not to impede its effect on my PSA levels, and adding an additional rest week it appears that the chemo is manageable. So I shall wait for my phone call and plead my case with the oncology team.
So while I wait for the tree and hedge folk to finish with the next door neighbours garden and get to mine I draft the start of todays blog and read more of my newly acquired poetry books. All of this with one eye on the clock as tonight at 5 o’clock England take on the Democratic Republic of the Congo in the world cup. No idea how that will turn out. Inevitably I jot a poem.
544 July starts with a review, Do I or don’t I go for cycle nine? The bloody arithmetic is good and with it the logic of continuation. I wonder if I have forgotten the pain that comes with the toxic poison, but the thought of longer life is primal in its pull. Inexplicably the having more appears to be irresistible, except for those in extremis, but I do not know if my head could ever be there. Time will tell, I suspect there are tests to come. Then I will see.
544 01-07-2026
As the tree and hedge folk bring order to my hedges the oncologist rings to do my review. His recommendation is to quit and have a nice summer, but I would regret not knowing if further improvement was possible. Post chemo falls into three groups. firstly the group whose PSA rises almost as soon as they stop chemo, the second group have a gap of four to six months before their PSA rises again, and finally group three whose PSA may not move for a year. I have no way of knowing which group I am in but as I understand it the lower I can drive my PSA down and the higher the percentage reduction from my baseline PSA measure the better are my survival chances. So it is a gamble. The oncologist says he has one more rabbit to play, a sister drug to my current chemo, his concern is that my neuropathy does not receded it might interfere with more chemo. The sister drug has similar side effects to my current chemo, so I am sticking with the devil I know and trusting it will reduce my PSA a bit more. My decision is made and the oncologist agrees to let me go for it. So I am now expecting a message from the chemo suite to tell me when to turn up on Friday.
All I have to do now is grit my teeth and watch England play DR Congo and probably Belgium at nine o’clock. I must remember to load my chemo steroids into my dosettes to start taking tomorrow as pre and post protection from the poison. The tree and hedge folk leave and our hedges are for a while well manicured. So far today has been a productive one and set the household fair for a while. There are now other things to get done around the house, which I will set my mind to in due course. For now that is enough for me for one day.
Fight and count the numbers, the logic is in the arithmetic.
Tuesday and my latest blood results finally came in at 1:20am so they were there when I woke up this morning. I was was not sure what to expect but was pleasantly surprised when i looked at them. My PSA had dropped more, my eGFR was up and the best its been since my kidney decided to play up, and my platelets were into the 200 zone. With PSA score of 3.1 it means that I have reduce my rechallenge baseline PSA by 69%. This last cycle (number 8) has produced a 10% reduction from the baseline using a 75% dosage. That is a good result I think. Tomorrow I have to decide whether to progress to Cycle 9 and under what conditions. At the moment it feels like the logic is well and truly in the arithmetic.
Could not ask for more. Now comes the decision.
The lowest that my PSA has ever been is 0.2 in July 2020, can I get to that again? On average each cycle in the rechallenge has produced a reduction of 0.8 in my PSA. If I do two more cycles (the maximum I can do) then the expected reduction would be by 1.6, taking the total down to 1.5. So a range of 1.4 plus or minus 0.5 seems realistic. I would have taken this in December when my PSA was at 10 and rising.
Having spent time mulling over the results I make myself breakfast and the go to the garden and spend time with my new poetry collections and reflecting on the blood results. My partner returns from her visit to the gym and we decide to go to a garden centre for an afternoon scone and coffee. While sipping our drinks and devouring our scones we chat about the blood results. Its a tricky decision as the balance between the logic being in the arithmetic and “Quality of Life” is a complex one. The old arguments of logic versus the subjective feelings of the self surface and basically, as my partner points out, “only I can make the decision.” So I have until tomorrow afternoon to make up my mind. At the moment arithmetic as a way to long live seems to hold sway over me, but things could change.
On returning home I settle down to draft the blog and sort out which world cup football matches I will watch tonight. After last nights shock results see Paraguay and Morocco dump Germany and Netherlands out respectively any future games are more exciting. It seems anyone can knock anyone else out. Some how I cannot see France being dumped but Norway v Ivory Coast is trickier to call. There will be family tea and todays crosswords to do before the first kick off. After that I shall be staring at a screen until the defeats and victories come to an end and I can down my meds and go off to bed. Tomorrow is my decision day when my oncology review will decide if my chemo rechallenge continues. It is also the day that the tree and hedge folk come and do our hedges at the same time as they do our neighbours, so I shall be making hot beverages and sharing biscuits.
Saturday and it is a day to attend to Elsie (the car) whose battery needs a run to charge up. After breakfast and taking my meds my partner and I drive of to a far away garden centre. We wonder around the garden centre and note the quality of plants and then head for the café. Its nice to eat outside and chat. Before driving home we return to the “pong” shop and buy a couple of citronella candles as we have the ambition of eat outside on the patio. The citronella candles will allegedly discourage midges and mosquitos. It remains to be seen if this is true or not. As for the rest of the day, it was all world cup football and night meds.
Sunday is a slow day during which I spend time in the garden. I get down to do some serious weeding and find I need to stop frequently to rest. The afternoon passes quite quickly but there is time to go to our local garden centre for a milkshake and pastry. Of course we could not return home without buying more bargain plants to fill the few spaces left in the garden. The evening is filled with the first knockout football match of the world cup. It is not a classic game but at least it did not drag out into extra time and penalties. Of course Tesco deliver mid game, fortunately nothing of the game was missed, that’s the upside of a boring game that only gets resolved in extra time. What is also delivered is a new poetry collection by Leontia Flynn called selected Poems. I have started to read them and like them, they are accessible and clear. They are also witty and well observed, my kind of poetry. I take my evening meds and finally go to bed after watching a film.
A lovely new collection
Monday and I wake with the thought that I have to be giving yet another blood sample this morning. I take my time getting up and have a brief breakfast to go with my morning drugs and I am then off to the GP surgery to have my bloods done. As usual the phlebotomist is quick and efficient and I am soon out and on my way. I drop by the new Co-Op store and get cash, a paper and a bag of doughnuts before driving home.
Once home I whip through the days cross words in the newspaper before settling down to rea more of the Leontia Flynn poetry collection. I am finding her poetry really appealing. By lunchtime I am drafting the blog for the weekend and as I do so yet another poetry collection arrives, this time it is the selected poems of Gabriela Mistral, a Chilean poet who won the Nobel Literature prize in 1945, the first South American writer to do so. My new collection is in both Spanish and English, which I find interesting as I like to read the Spanish as well as the English. I o not speak Spanish but the reading of poetry in the Spanish gives an idea of the original flow and sound. I have a small collection of Pablo Neruda which is in the same format and gives me the same pleasure.
Looking forward to getting into this collection.
My evening is all football as I wait for my blood results to come through. At 12:40 I give up and go to bed. I think that yet a gain there will have been a problem.
Friday and it was a long, very hot night. So hot that in the small hours of the morning I retreated to the lounge recliner to benefit from the fan. When I returned to my bed I slept fitfully till the morning. After downing my morning hot water I set about trying to fix the bathroom shower that is constantly coming up with its low pressure sign and refusing to work. I disassemble the shower head and clean it, replacing the numerous balls in it. When reassembled and back in place I test it. My efforts have made no difference at all! In defeat I clear my tools away, take my morning medication and gratefully accept the toast my partner offers me.
There is a brief period where I catch up on the world cup by filling in my world cup wall chart before starting to draft the blog for the day. I have little planned apart from a quick trip to a garden centre to dump all the old pots and flower trays that have accumulated. I might have another go at booking in my car for a service, but mainly watching France play the Netherlands in the world cup tonight. My overall ploy is to out wait the heatwave by exercising my inner sloth to the fullest. Nothing but essential movement and necessary life admin. The reality is that I spent hours applying for a Blue Badge. An unbelievable tedious process. Now I have to wait 28 days. I am not hopeful.
The constant development of the personal universe.
Thursday and I wake to be quickly the only one home. I shower and sort out a couple of light weight ice hockey jerseys before making breakfast and taking my morning meds. It is a leisurely morning until the post arrives where I find a fresh blood form from the hospital. As my oncology review has been pushed on a week I assume they need an “in range” set of bloods in case doing Cycle 9 is an option. I ring the GP surgery who are very obliging and find me an appointment for Monday morning. With that done I ring the boiler maintenance service and book the boilers annual service I feel like I am on a roll. I make the mistake of opening the rest of my post and reading this seasons Poetry Review and the news letter that comes with it. Some of the content makes me “miffed”, a term used by an ex client when describing how he felt when discovering that his wife was having an affair. He later committed murder in his lunch break declaring that he still felt “miffed”. Anyway it prompted me to write something.
543 Dr John Cooper Clarke, People accuse me all the time Of being accessible... My ears prick up at accuse! So its poor poetry to be accessible? What is craved is the obscure, the veiled, the smart arsed, uninteligble, sickenling, egocentric over intellectualised clap trap that indulges airy fairy whimsicality of an aesthete who cannot look you in the poetic eye and say this is it. I am saved by Foyle’s Young Poets anthology where youths eye is not turned away, raw and rugged and very accessible. But oh woe the adults cannot resist slapping, Content warning, graphic imagery or Content warning, allusion to suicide all over the work of the young. And there you have my loathing of the poetry industry. Killing the thing it loves with a kiss like the coward it is. 543 25-06-2026
I am saved from my rage by a phone call from a friend who is out and about hunting shoes for her children and a tent for herself and partner. we talk for a long time about children developing and growing and how our families are at the moment. Its really good to chat and hear about others family and how the world is working for them. It is also good to hear a fiend sounding well and energetic, although the usual tired from parenting a bright young family. At the end of the call I am ready to take on the task of trying to book my car in for a service, sounds simple but if course it is not. I ring the dealership where I bought the car to confirm that they also did the service. They say they do despite the fact that their web site booking system says they do not. I go to the web booking system and all goes well until the actual day of the service needs to be selected. I am offered the first available on the 1st of July , a day on which I am busy. The booking system does not allow me to select an alternative day unless I want to “drop off” or have a courtesy car. In the end I give up, open a beer and go and sit on the garden swing seat felling I have done enough for one day.
After a while gently swinging in the garden I add some more support to the ever growing sunflowers. Its getting to the point where I might need to introduce even taller support canes. No sign of flower buds yet but the Dahlias that have come through are going mad. I am joined by my eldest daughter, returned from work and chats about what is going on at the university. She is now a proud owner of a name badge that has Dr in front of her name. W\e are soon joined by my partner and her friend who have been out to play crazy golf and lunch. We chat for a while until I unreel the hose pipe so that my partner can water the garden, during which I head indoors to draft the blog and open the package of new cargo shorts that have been delivered.
My partner and friend go out to dine and leave me typing before I put my cottage pie, a gift from my partner, into cook. This evening there is world cup football later and I need to plan a trip in the car as it told me when I checked its mileage that my battery is getting low and I need to not leave it on the drive for any longer than three days. The sooner the better is my thought, so I might get up early tomorrow and go for breakfast at a far away garden centre. However first there is football, night meds and bed to do.
Tuesday. A grim day. The after effects of my Monday jab hit hard and result in a poor gut and no energy. No appetite and a general feeling of just wanting the day over. This feeling was finally completed when watching the England football team grind out an unimaginative gaol less draw with Ghana late in the evening. I took my meds and went to bed hoping for a better tomorrow.
Wednesday, and I wake up feeling marginally better than yesterday. After checking my messages, email and news feeds I get up and make breakfast. Its the first real meal I’ve had for a while. I eat, take my morning meds and catch up on the BBC news channel. Its the usual stuff, none of which I care that much about to be honest. The major story seems to be that its going to be warm and sunny for a couple of days. Sounds good to me, an ideal situation to laze, drink 0% Peroni and eat Ben and Jerrys strawberries and cream ice cream. It is ideal reading and writing weather, so I firstly catch up with drafting the blog. I try to capture where I am in a poem.
342 Cycle 8 comes to an end, the seventy five percent dose has dropped my PSA. I should be pleased but the cost was high. The fatigue extreme, the neuropathy worse and the head fuzzy, but most of all the weakness. The oncologist counsels “no more”, I am uncertain, surely if it’s still working then press on. Reduce the dosage; try again? These are questions that I ponder on my Chemo Summer Holiday. My fourteen day break in heat wave England, I wonder how much the larger and ice cream will sway my judgement. 452 24-06-2026
The day progresses with all the mundane jobs and routines as usual. The bins get brought in, things tidied and I sort out my weekly binge bet on the lottery. I join my partner on the swing seat to relax in the shade of a very hot afternoon. I doze, reflect and drift around in my head for a while as I watch the birds in the trees. My partner asks me where the neck fan has gone. It was one of those gadget that got brought, used for a bit and then tucked away with other “useful” items on a shelf in the office. On returning to the house I dug the neck fan out and plugged it in to recharge it. It looks like with this heat wave a neck fan might just become really useful again. I could not resist a selfie with the neck fan.
The rediscovered neck fan, ideal for theheatwave!
Of course at this time of the month its time to read the meters and find out how we are doing on the energy front. Having read the meters and submitted the readings I do the money calculation and find that we are in budget for the month. Always good to know. I get a message from my son in Stockholm who has been offered a full time permanent post at the Swedish Opera House. This is brilliant news. So I go into the evening still feeling fatigued from Mondays jab but feeling a little more up lifted. This evening there will be a world cup football match to watch and then later its Scotland v Brazil. A point will see Scotland through to the knockout stage, it could be a belter or another sad near miss for the Scots.
