Sunday and its a lazy morning and one that continues to prompt me to ask “what is this?”
549
I feel becalmed, drifting in circles, directionless. In this state I see the stars rotate and I an ever fixed mark,. Around the ocean, the sea life with its tides and currents. Atop of it I bob about drifting. Is this what it is.
549 26-07-2026
The day drifts between some clearing up and some mending. Firstly there is the soft toy tigers eye to stick back in, and then one of my Japanese kneeling women from the garden lost her head when my partner tripped over her. So I called on all my mending skills to stick the head back on and of course gaffer tape it to keep it in place until set. More trying was the time spent trying to mend my phone. The screen went black and I went into serious problem solving. Eventually I get the screen back up and running and change my display settings, it might last, it might not.
Japanese kneeling woman in intensive care after headectomy reversal.
The rest of the day goes by with Commonwealth Games and in the evening the discovery of a new and reasonable drama series called Steal. I get to the end of the day, draft a brief blog, take my meds and go to bed. Tomorrow is my eldest daughter’s birthday so there will be cake and lunchtime treats at our local Pesto.
Saturday and its up for breakfast with my partner on the patio. With food and morning meds out of the way my partner and I go to the garden centre butchers to buy meats and other goodies to eat in the warm weather that is coming. Once home I sort out some things for my eldest daughters birthday on Monday. The afternoon starts with a shared lunch with my partner taken on the swing seat in the garden. A lazy time before I return to the house and prepare the cottage pie evening meal.
A friend sends me a picture of the tattoo she has had done today to celebrate her and her partners fortieth wedding anniversary. It is a really good Japanese inspired tattoo. Her partner also has a similar one. I spend my evening watching the Commonwealth Games and an interesting western where everyone apart from the two children die. I draft the blog and think abut whether I am any further forward in thinking about what stage of my cancer journey is at. I still do not really know so the “what is this?” question is still very much a live question for me. I take my meds and go to bed.
Its Friday, I’m no longer in the chemo rechallenge. After breakfast I go to the garden to think about where I am and what this time is. Being me I end up writing something like poetry.
548 Day 1, what is this? sitting on a swing listening to the Stones, a whining harmonica. My Stratocaster mute waiting on a jack plug, I do not know what this is. The chemo challenge is over, no new intervention, no cancer weapon deployed. I'm in the trenches waiting for the enemy to advance, and advance it will. So here I am asking what is this? Me time? Quality of life time? Palliative care? I don't think I've been told to fuck off and die, I know there is a sister drug that can toxically be tried, so what is this? I am bemused by this space, this hesitation in life as if I've developed a being stutter, not sure of my life words, my feelings or what to do. This has the air of danger, too easy to slip into casual acceptance of sloth and forget that this is a fight , its all out warfare for my life. Is this the Christmas football game across the trenches? What is this? This started as a list, a random jotting to try and find a new name for the blog and here I am doing poetry. I still do not know, what is this?
458 24-07-2026
I’m in a strange place but I listen to music, read the meters and submit their numbers. I respond to a quote, order shredding bags and a birthday cake for my eldest daughter. I start to make a shepherds pie until thwarted by the lack of viable potatoes and start to draft the blog. My new head phone jacks arrive and I await my chance to fire up the Stratocaster and the Peavey amplifier. So I slide into a Friday evening not quite sure where I am in my journey. It feels like I need a plan and all I’ve got at the moment is an inkling to start training again and tapering off my steroids. Maye that should be enough right now and the rest be played by ear.
Thursday the 23rd of July, the last day of my chemo rechallenge. Its over, done with and I enter a new era and the challenge of finding a new heading for the blog. Suggestions welcome. It means no more chemo for a while, no interventions, just blood monitoring. It also means no more children’s toothbrushes, its back to the power tool.
The children’s toothbrushes that have seen me through with a safe mouth.
I finally get up after drinking my morning hot water, checking my social media and news feeds. I take my vitals, but I am not really interested, I do it for completions sake. My blood pressure is okay as is my heart rate so everything is tickety boo. I shower and then then search the pantry for muesli but find none, so its toast and marmalade for me. I take my meds but as yet I’ve not adjusted my steroids yet to start the tapering process, I intend to do that on Tuesday next when I refill my dosettes. Need to keep some routines. A friend rings as she is on her way to do the shopping prior to traveling on holiday tomorrow. She is looking forward to her family holiday and the chance to rest and recover by the seaside. Its an exciting time but there are the holiday chores to do like packing the car and organising the travel snacks. After the call I have a long conversation with my eldest daughter about the official secrets act and what that means for research. I move on to booking a Tesco slot before a guy from the house alarm calls me and discuss an upgrade to my system. I eagerly await a quote.
By now I am hungry as is my eldest daughter so its timely when my partner returns from having her hair done and I suggest we go to Pesto for a good lunch. We arrive to a quite restaurant and settle in to a prolonged late lunch. It is a celebration of doctoral completion, chemo challenge completion and successful hair artistry. Of course when it gets to the pudding menu I immediately know its Affogato for me with an additional shot of Amaretto, well why not, fuck it, what have I got to lose other than everything. I pay the bill and we drive home. My next task is to get a quote form a local shredding company to get rid of all my eldest daughters PhD notes and all my old confidential papers lurching in my “must shred” box and the boxes in the loft stuffed with old assessments and reviews. With the prosaic done I take a photo of my chemo challenge tooth brushes and start the draft of todays blog.
With the draft done I head for the garden to see how it is going and then uncase the Stratocaster and tune it up and try to remember what all the knobs do on the Peavey amplifier. I am a crap guitarist but on occasions its nice to hit a few chords and pretend I can play blues in all its distorted forms the amplifier can produce. The rest of the evening is any bodies guess but I don’t care really, tomorrow I start a new era in my Cancer Years adventure and I am not sure I can afford to care too much about the future. It all ends up in the same place, the question is which path is them most fun.
All the paths lead to the same place. The question is which path is more fun.
Wednesday and I wake after a reasonable nights sleep having watched the History Boys before going to bed late. My injection site from Monday is still swollen and sore so I am in discomfort when I move around. My partner brings me a hot water and I finally get up, having sent several emails. I am pleased to say that the person who wrote the Forward to the last poetry anthology has agreed to write one for the new poetry collection, which is very pleasing. I try and tidy up the growing pile of “stuff” on the lounge coffee table but I get interrupted by a phone call from the oncology team. My expected time is in the afternoon but the woman explains she is starting the phone calls early. Well that’s alright then, clearly the nhs does not expect its cancer patients to be doing anything other than hanging around waiting for the team to call. Clearly any appointment time that is sent out is now variable by at least five hours.
The conversation was quite odd. It seemed that the expectation was that I was going to go for cycle 10 and she seemed taken aback when I said that as the intervention had stopped working that I was not going to do Cycle 10. I pointed out there was no point in doing cycle 10 if the intervention had stopped working. So we talked about PSA levels and the progress that I had made but that for me the logic was in the arithmetic. She eventually agreed with me and said that she would send me blood forms and a new date for four weeks time. I raised the issue of tapering off the steroids. Her first response was to cut down to one a day for a week and then end them. when I pointed out how long I had been on them she changed it to two weeks and then stop. I have no faith whatsoever that she knew what she was talking about. I shall read more and research the tapering process and see what the literature says before I do anything else. Then it was over. So tomorrow is the last of the 21 days of the cycle 9 and will be the end of my chemo rechallenge. It will have lasted 220 days plus a 14 day holiday between cycles 7 and 8. Over that time I have reduced my PSA by 69.9%. All that matters now is the rate of rise in my PSA from here on in.
My partner makes me a fried egg sandwich to go with my orange juice and morning meds after which I start to draft the blog for the day. While doing this my eldest daughter returns home from the physio asking how many graduation day tickets we want. So if all goes well I will be seeing my eldest daughter be presented with her doctorate in early September.
The rest of my day is spent lunching with my partner and planting newly acquired plants into the garden before spending the evening watching the most appalling juvenile film until my partner retuned from the theatre. I take my night meds and go to bed. Tomorrow is officially the last day of my chemo rechallenge.
Tuesday and its been a rabid night, my injection site is very sore and tender I got up at 5am to take paracetamol again and clearly passed out till 11:15am. I came to feeling shit and sore. It takes a while for me to get up and get breakfast (more an early lunch) and take my meds. After the disappointment of the blood results last night I am feeling flat and deflated. I’m not sure where my next move is. I know that cycle 10 is out the window and that the oncologist will just want to monitor me for three months and tell me to fuck off and have a nice summer.
I spend time sending the additional poems and manuscript stuff to the editors at Rulers Wit to complete the manuscript for the new poetry collection. Later in the day I ask the person who wrote the Forward for the Man to Man anthology to write the Forward for The Rechallenge. My partner returns from the gym and has lunch after which we drive to a distant garden centre to collect a new hand bag ensemble that my partner has ordered. It is identical to the one she has and reordered one because it has been so successful and functional. Just like buying the same brand of underpants because they are comfortable. I am wearing my new Wildhearts T shirt, a gift from my eldest daughter who went to one of their gigs last night. While sipping diet coke and forking a coffee and walnut bun into my mouth we chat about my blood results and that the Chemo Rechallenge has come to an end. We both know that there will be no intervention beyond weaning me off the steroids for at least three months so we decide to investigate a short break away at a Spa. We drive home and I set about booking a Spa break. Mission complete. In early August we will be Spa ensconced and being rubbed down with oily rags and dining on, hopefully, robust food.
The evening arrives, I’m not hungry so it turns into a FFY (Fend For Yourself) evening. Apart from the Great British Sewing Bee and The History boys there is sod all on TV so I might just get the Stratocaster out and see if my fingers still work on a guitar. It all depends if I can find my Roland headphones. After my crap night last night I shall head to bed early having taken my meds knowing that tomorrow is the last of the Chemo Challenge and that my oncology review is going to be a disappointment, at least I can negotiate a tapering off of my steroids. I think I’m tottering on the brink of just saying “Fuck it”.
Monday, I am up early to make breakfast and take my morning meds as my partner goes to the gym. I take my car to he garage and run it through the car wash and check the tyres. Having topped up the tank I drive home for a quick change of clothes. At lunch time I go to the GP surgery and have my 28 day jab, a B12 jab and a set of bloods taken. The nurse had to have two goes at getting my blood with aa result that I have a hole in each arm.
A quick trip the garden centre for a bacon roll and a diet coke along with my partner and eldest daughter. Of course we came away with another plant which I planted up later in the garden. A friend rings me and we chat for a while about holiday experiences and how our families are. it was good to catch up and exchange news. Into the evening I take paracetamol to dampen the injection soreness. There is a meal and two Spiderman films before my blood results come through, which I caste up into a grid.
PSA has edged up. Not good.
My PSA has risen slightly, that’s no good. There will be no Cycle 10, the logics in the arithmetic. I draft the blog and having taken my meds go to bed, disappointed and anxious. This is a set back.
Sunday and I wake up late with a headache. Once up its toast for breakfast with my morning meds and paracetamol. While I wait for the paracetamol to kick in I create a Moonpig birthday card for the eldest grandson of my youngest daughter. Hopefully it will arrive on his birthday on Tuesday. With the card on its way I start the draft of todays blog. There is little for me to do today apart from riding myself of this headache and preparing for tonights world cup final. Tomorrow is a 28 day jab, B12 and bloods day so I shall prepare for those as best I can. It is a crucial set of bloods as the PSA result will determine whether or not I get to finish the chemo rechallenge or go onto the last cycle, cycle 10. If the PSA is down by a reasonable amount the logic dictates that I should go for cycle 10, if it is not then its probably best to stop, the question is “what is a reasonable amount”. On average I have decreased my PSA score by 0.86 per cycle but the dosage used in the last two cycles has been decreased. My last PSA score was 3.1. The lowest it could get if the average of 0.86 is applied over ten cycles is 1.4. I will be disappointed if my PSA score on tomorrows bloods does not dip below 3. How much is the question, I think I will be pleased if it gets anywhere near 2.5. If it does I will be inclined to go for cycle 10. I stand by my dictum of “the logic is in the arithmetic”.
Spain beat Argentina 1-0, so its night meds and off to bed.
Friday and a grim nights sleep. I get up late and get my breakfast and take my morning meds. I spend time downloading new poems for tomorrows poetry stanza and reading them through. At some point I convert my eldest daughters PhD thesis from Word to a PDF file for it to be sent off. With that done I head for the garden and finally get the new plant tubs filed with compost ready to plant on the Domeflowers that my partner has grown from seed. With the tubs filled and placed around the garden there is time to tidy away the garden before the evening meal and an evening of TV. I managed to watch all of I Jack Wright. SIx episodes of reasonable stuff which ends up with no conclusion and a bland “to be continued” banner at the end. There is obviously going to be a second series so I need not have bothered until it is out. I go to bed having set the dishwasher going and taken my night meds.
Saturday and I am up early to download my poetry stanza poems and to watch one of the new international rugby while I eat breakfast and take my morning meds. While Ireland get crushed by New Zealand I begin the draft of the blog. I decide on which poem I submit to the Stanza. It is my poetry version of Terry Pratchett’s Dark Morris.
527 Its a wood at night the dark is spider cold and blinding. Trees form the boundary, and at its centre a seat. A fallen trunk, heavy on the ground. Its inky, threateningly moving in slow waves around me. There are no intruding stars, no moonlight beams to give hope of sight or sight of hope. Wrapped hard in moleskin, confined by bible binding stillness it is fixed in body and in the space. This is a living coffin, velvet lined and waiting for the final submission. Nothing moves or intrudes, only the sense of dense darkness is present. Here I sit and recite dark poetry, silent verses, soundless words, nothing to disturb the woods blindness. The poetry flows thick and opaque, moving like a snake soundlessly. Strain your ears, focus on the air, but there is no disturbance, not a hint of sound or vibration. This is dark poetry, spoken silently, heard profoundly and felt in every fibre of soul and being. In this forest depth is where I reside, the place of despair where being is mute but everything is jet clear. I sit and silently recite here in the dead black. This is dark poetry, silent, undeniable and final. 527 10-05-2026
By 9:30 I am organised and look forward to The rest of the day which will include the third place world cup match between France and England in the evening. It promises to be another disappointment for England if they do not improve markedly.
The poetry stanza goes well and I enjoy my afternoon alongside other writers and poets. Once done I watch England rugby team beat Argentina before watching England football team beat France 6-4 to win third place in the world cup. I take my knight meds and go to bed looking forward to free day until the world cup final.
Fight, but not like the England football team! Losers!
Thursday and a tricky nights sleep. England had lost the night before in the usual English way, too timid in the end. I had spent some time in the spare room trying to get to sleep but by morning I am back in bed and taking my vitals. My vitals show my hart rate back don to normal and my blood pressure doing okay for a 78 year old. I must get back to training on the rower again. I must be feeling better if I am even thinking about training. I eventually get up and make breakfast and take my morning meds. I check my messages and find more poems being posted for Saturdays poetry stanza. As I check my socials I have the Stones in my ears and it prompts me to scribble a quick poem based on the fact that my eldest daughter has introduced me to The WIldhearts, a punk band that is still very active. They are an uncompromising group whose lyrics preclude them from ever being played on Radio 2, or any radio I should think, however I enjoy them immensely. Here is my poem.
546 Hurray for the Wildhearts and their driving fuck you raucous music. Punk in adulthood, still raw and anti the man. Not a Radio 2 favourite even if they do spell Cunt cuntze to get their disc sleeve printed. As they proclaim, “there’s always some cunze in the way”. Its the language of my streets, my adolescence and probably most of my adult life. Its a shot in the arm to find my thirty something daughter is a fan and she was happy enough to gift it to her father. I can feel a live gig coming on. Elbowing my way into the Mosh pit I might just recapture the innocent joy of thinking things can be simple and its okay to point the finger at the nice people. All I risk is being hit with a rolled up Daily Mail.
546 16-07-2026
I still cannot decide on which poem to take to the poetry stanza and decide that I shall decide tomorrow. In the meantime I relax and draft the start of todays blog looking forward to the afternoon when I am having my nails done. The cross of St George and the football are definitely coming off my nails today. I still cannot go back to having my “subtle sparkles” on my nails as I’m still in chemo and likely to be so until at least August 13th.
With my nails done and the decorations removed I wait for my partner in the gym lounge and idea away the time by doing the Tesco order. Once my partner arrives we return home where I sit on the patio while my partner snoozes on the swing seat. By the time we are both ready to eat no one wants to cook so we order in a take away and eat out on the patio. The rest of the evening is spent on the patio chatting, planning and watching the bats zip about. Time flies by and at 11pm I clear away, take my meds and get myself to bed. I am conscious that its three days to my next set of bloods which will determine whether I get to do Cycle 10 of the chemo rechallenge. It is also three days to my regular 28 day injection so the beginning of next week is a crucial time.
