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.
Fight, even on holiday, cancer doesn’t take holidays.
Sunday, fathers day, and I wake to the sound of grandsons playing. There is breakfast to be had and fun to be got on with. A message from my son wishing me a happy fathers day arrives as does a card and a box of chocolates. There are also other cards and well wishes. Before I can get up and get breakfast the family are off out to go and visit my partners mother so the my grandchildren can meet their great grandmother, be it only briefly.
Having had breakfast I retreat to the garden where I water some of the newly planted plants and then sit on the swing seat reading my favourite Pablo Neruda poems. I am beginning to think that the swing seat is my favourite spot in the garden. Since having the decking base put in for the swing seat I seem to have loaded the decking with pots of sunflowers, tomatoes and dahlias. After a long uninterrupted period of reading and cloud watching the family return from their visit to their great grandmother. I have a chance to have a long chat with my youngest daughter side by side on the swig seat. As we talked I was reminded of a couple of important things, one, is how bright and thoughtful my youngest daughter is and secondly, how challenging it is for children to learn how to be parents. Deciding to make Wills had raised all sorts of issues for my youngest daughter and her partner about how to best safeguard their boys and each other should anything happen to them. Of course Wills are made in the hope that they are never going to be put into effect if you are a young parent, so it comes as a challenge to think about all the unwanted possibilities. The are are also issues about where to raise young boys and in what sort of environment. Our conversation comes to an end when lunch is announced.
After lunch the grandsons and parents pack themselves and all their kit into their car and drive off into the distance and home. I and my partner stop for a drink and catch our breath before we start to tidy up and get the house back to its normal state. During the afternoon a strange Amazon packet arrives with my name on it but a variant of my address. When I open it there is a mobile flip phone. It is certainly not anything that I have ordered. I and the family By tea time we are about straight and I settle down to watch an early world cup football match. With a brief interlude to watch another episode of an American police drama there is time to watch another match. It is another giant versus minnow game where the minnow gets an unexpected draw. I take my meds and go to bed knowing I need to be up early as tomorrow is one of my Jab Mondays. The basic drug fight against my prostate cancer will go on in this form as long as I live. That’s a really strange thought to live with.
Monday and I wake up with a bad gut. I get up and find clothes for the predicted heat wave. My partner takes me to the GP surgery and waits with me until the locum nurse calls me in for my jab. She is quite chatty and seems to be aware of the nature of injection. She takes time to find a suitable injection site and takes her time injecting the fluid and then gentle massaging the area to encourage the dispersion of the drug as she was aware of the tendency of it to clump into a lump. My partner takes me home and then goes off to the gym while I have a cursory tidy up, have breakfast and my morning meds before settling down to watch Sir Kier Stammer resign as Prime Minister. The mystery of yesterdays strange parcel gets solved when a friend messages me to say that she has accidently sent her husbands new phone to me by mistake. I agree to post it to her as soon as possible, and then I continue to tidy up and start to draft the blog for the last two days until my partner returns briefly before taking off again with her brother to visit their mother in the care home.
A bag of T shirts and over shirts (shackets) arrives for me, so I try them on and then integrate them into my wardrobe before lazing for a while and then taking the return parcel to the Post Office. My injection is making itself known as it gets sore so I ease into an evening of world cup football and not a lot else. After football and some Brokenwood Mystery episodes I take my meds and get myself to bed.
Early Saturday morning my blood results come in and they pose me a question, ‘are they good enough to continue the chemo rechallenge?’ Its a nice problem to have but I’m not sure how I am gong to work through it. I need to give it time and I need to see if going back on the steroids is going to give me any more energy to continue with. Its too early to know this and I need to use my chemo rechallenge holiday to monitor my well being and see how I am by the 1st of July. So I have some breathing space to see how I am and make a decision about more chemo.
Ta Da! my PSA has fallen by 0.9, this is good.
My chemo rechallenge base line PSA was 10. so my current PSA of 3.4 represents a 66% fall in the six months of the chemo rechallenge. Is this is this good enough to increase my survival time? I do not know. The real kicker is that no one knows. The research reviews would say this is a significant fall but it is not possible to predict whether or how quickly the prostate cancer will re assert itself as shown by a rising PSA. At the end of the night I take my meds and go to bed hoping for sleep and more energy.
So I go to bed late with a conundrum and the result of the Scotland v Morocco world cup game. Scotland lost to 78 second goal! When I wake up in the morning at 10 o’clock the family are out and about apart from my eldest daughter. It takes me time to get up and get going, I have little energy and it is exhausting doing the ordinary things like dress and eat. I make breakfast, take my meds and begin to draft the days blog. It feels like I’m not going to be much use today, I certainly won’t make the Poetry Stanza meeting this afternoon, which is a shame as I miss the group and the poetry but I am how I am at the moment and need to keep things manageable.
As the day moves on I find I have more energy so by the time the family return from the the trip to the local Tropical Bird Garden I’m up lunch and some gardening with the older grandson. We plant some tomato plants and re-stake the sunflowers. Mid afternoon, while I rest on the garden swing seat the family go to the local shop and return with a try of plants for me to plant into an ornamental pot. With this done I hang a newly planted hanging basket and tidy everything away. Time to retreat to the recliner and watch some Paw Patrol with the grandchildren.
The family eat ta together and then the bedtime routines kick in for the grandsons. They have had busy days and go to sleep immediately they go down. The adults relax for a while but its not long the parents go off to bed hoping to get a full nights sleep. I and my partner watch a world cup football while doing other things. I order over shirts and T shirts in anticipation of a warm spell coming along. With the match over there chores to do, meds to take before going to bed.
Friday and the first day of a thirteen day chemo holiday. My first task is to get up, shower and get ready to go to the GP surgery to have another blood sample taken. Taking a shower knackers me, I have no energy at all. I have a simple breakfast and then I ask my partner to take me to the GPs. We arrive and sit in the waiting room for a short while before I am called in. I show my forearms to the nurse who asks who was responsible for my bruised left arm. I tell her she was but the reality is that I bruise more easily than I used to. She uses my right arm to take the blood. We have a chat about the reason my last bloods were rejected and we check the on screen details against the bloods form, they match, as do the labels on the vials. I leave with my partner.
Once home I ring the prostate cancer specialist nurse. I have to leave a message as no one picks up but I do get a call back quickly. I explain that I have not had any Prednisolone for five days and that all the advice I have been reading says that I should be tapered off of it. She listens and agrees I should be tapering. She says that she will ring the consultant. A few minutes later she rigs back and says that the consultant thinks I will be okay but he is going to email his secretary a proscription for more Prednisolone and that I will get a call from her. Before the secretary can ring me the hospital pharmacy rings me to tell me that the drugs are ready for collection and that people are keen for me to be taking them as soon as possible.
My eldest dies me daughter accompanies me as I Uber into the hospital pharmacy. The service is very speedy and we are soon Ubering home having bought strawberries from the stall outside the oncology centre. No sooner than we had returned than my youngest daughter and family arrived to visit for the weekend. It had been a rough journey with a lot of accidents along the way.
Everyone settles in and rests as much as possible before the evening meal. I am very tired by now and take my newly dispensed drugs. I shall be staying up to see my blood results, which means I will get to see some of the Scotland v Morocco world cup game, unless my bloods get rejected again.
Thursday, the last day of cycle 8. I get up and get ready to spend the majority of the day at the gym. I take my meds and fill my bag to take to the gym. Mid morning my partner and I go to the gym, while my partner goes to her aqua class I eat a bacon roll, read and write some verses influenced by it being the end of Cycle 8 and probably the end of the chemo rechallenge.
539 Last day, Amen. Cycle eight ends, Amen. The oncologist says, ‘stop’ and I am pleased, my body is weak and I need to rest, My scars beg to heal, my veins plead recovery, and the bruises pray for dispersion. I’ve done my rounds, the bell has rung and I drop into my corner knowing the ring is no longer mine. Amen.
539 18-06-2026
540 Brought to my knees I can take no more. The poison has done its work and my body has fought but has no more. Now comes the wait, I will recover, or not. All I crave is to be able to do the ordinary.
340 18-06-2026
541 Boxing day to Fathers day that was my rechallenge. Now I pick up the dice and see what numbers my body will roll. PSA up or down? Will my neuropathy leave my hands and feet? Will my energy return? These and so many more questions hang in the air, that see me waiting and seeing. Its a cliff hanger waiting for poems to follow.
541 18-06-2026
My partner joins me in the gym lounge and we have lunch. We then go to the beauticians and check in. I have my nails done and it includes having my world cup art work on my nails, a St Georges flag and a football.
World cup nail art plus chemo ridges.
I return to the gym lounge where I meet my brother in law and a niece. We chat family chat for a while until they go home. Soon after my partner appears and we drive home. Of course there is world cup football to watch and tea to eat before I draft the blog to a background of an American police drama. There will be another game to watch and then I head for bed. Tomorrow I have to get the GP nurse to take yet another blood sample, so I’ll be up early to get ready. I will be interested to see which vein they use to get the blood out of me.
Wednesday and its a oncology review Wednesday, so I get up and immediately check to see if my blood results have come through. They are not posted. I make breakfast and take my meds. I settle down to watch the football highlights I missed yesterday expecting to be called by the oncology team for my review. To my surprise the call comes around 11 o’clock and not the 2:30pm I was expecting. A woman introduces herself as one of the doctors on the team and then tells me that we cannot do the review because the bloods I gave have been rejected. Apparently the information on the form and the vials did not match. As the review cannot be done without the blood results, she tells me that they will reschedule me for next week and will send me conformation. I immediately ring the GP surgery and have a conversation with them about a new set of bloods to be taken. It takes time to get through to the person on the phone that there is some urgency in my request and not just a whim. After some consultations I finally get an appointment for Friday morning.
Having made my blood arrangements I settled down to watch Lionel Messi score his hat trick in Argentina’s opening game at the world cup. The doctor from oncology rings me again and tells me the consultant (he who made a pact with the devil), has told her to schedule me for a fortnight, not one week, as he feels it will make no difference. She also prompts me that the consultant is advising me to stop. I responded by saying that the consultant and I have had these conversations before and note that the oncology review will be on Wednesday July the first. All I can d now is to see if my body recovers in the next two weeks. Hopefully I might get more energy and less fatigue and the neuropathy decrease in my hands and feet.
I am not sure if I feel relief or not but I do know that my 28 day injection is due Monday, so life is not free from all cancer interventions. With my cancer arrangements done I return to working on the manuscript of the next poetry collection. It is a fiddly task but I eventually get to the end of it. By the time this is done its time to watch some tennis and to begin to draft the blog for the day. I am in the middle of this when my partner returns from visiting her mother in the care home and the garden guy turns up.
This evening is of course football dominated with a early six o’clock match and then the main event of the day, England’s opening game against Croatia. So I shall be settled down at nine o’clock to see if the England side can actually produce a reasonable performance. Tomorrow is officially the last day of Cycle 8 of the chemo rechallenge, it maybe the last all together, it is also the day I get my nails done. I suspect that I will come a way with some suitable world cup nail art.
Monday, I wake up feeling crap but get up to move my car so that my partner can go out. I stayed up last night to get my blood results, but they never came. When I check this morning and during the day they still have not appeared. I therefore do not know what my PSA level is and whether or not it is rising or falling. It was on this piece of information that I was going to base my decision about more chemo on.
I spend my morning and afternoon resting, feeling weak and without energy. I do fill my drugs dosettes for the next two weeks. Eventually I write a bit and start to draft the blog. When I feel like this I do not know what I want or how to get the energy to do anything apart from sit. In all likelihood this is me for the day now. Perhaps football to night then back to bed. I do ring my GP surgery about my blood tests and get told that the report has been done and gone to the oncologist, so I guess this set of results has not been posted on ‘patent knows best’. This means I am dependant on the oncologist telling me what my PSA level is and then me making an off the cuff decision. So its all on tomorrow then!
538 Bad day, Feeling terrible, Don’t know why. No blood results from yesterdays tests, crucial information not coming through. Tomorrow I have to decide whether to go again or bail out of chemo. No PSA level to judge efficacy means no data, I’m in limbo and feeling shit. I feel like the boxer having been hit knows it is only a matter of time before they meet the canvas. Weak, but brave the end is inevitable now that last piece of hope has gone missing. Standing still, facing the opponent, arms heavy, legs dead, trying to move, to dodge and weave, feeling hollow and waiting. So here I am still standing, hoping for a last minute moment of reprieve, a bell or towel to end this round. The irony being that this is one big rematch that goes on forever, until eventually I succumb, and can fight no more. Perhaps my corner will split my glove, call in the cuts man or just sit me out, I need the bell, the retreat to my corner and a chance to do something different. No more, my body cannot do this anymore. My head, my spirit are willing but the limbs can carry no more. I need rest.
Monday, bloods Monday, so I am up early for me and by 8:30am I am at the GP surgery. I try to log in on the automatic system and fail. I am directed to the reception. The receptionist checks the booking system and finds that my 28 day jab has been booked in as a blood taking but todays blood test has not been booked. There is some admin magic done and I am asked to take a seat. I no sooner sat down and I was called in by the nurse. My bloods were taken quickly and I was soon home.
I had not been home long when Open Reach arrived to install fibre broad band. Because they needed a cherry picker to install the fibre cable the cars needed to be moved off the drive to make space for the cherry picker to be used. I park my car across the road while my partner takes hers to the gym. While the installers get to work drilling holes, fitting junction boxes and laying the fibre cable I spend my time going over the edited version of the next poetry collection. Its painstaking work as I have to go over every poem and the suggested edits made by my editor.
The fibre broad band is in and working by lunchtime, when my partner returns from the gym. We have lunch and then I return to my poetry editing. My partner goes to see her mother in the care home. The rest of my afternoon is spent editing until my partner returns and I find myself having a nap having reached the end of my editing.
My evening is all football, match after match as I wait for my blood results to come through. I am apprehensive, so much hangs on this set of results. I’m going to have decide whether I continue based on this set of results.
