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.
Friday and in a determined effort to be ready for the visit of my youngest daughter and her family, including the two youngest grandsons my partner and I go to the garden centre for breakfast. In an attempt to fuel myself for the day I order the largest English breakfast they have. A rare treat, which I enjoy heartily. Once full of breakfast my partner and I go to the food hall and lay in provisions for the weekend family visit. Returning home we squirrel away the food and with a delivery from Tesco due later in the day I am beginning to think that we could do with a larger fridge/freeze.
I spend some watching the tennis and being impressed by the fact that a British player actually won and progressed to the quarter finals, in fact two British women reached the quarter finals. The day progressed to yet another world cup football match involving one of the hosts Canada. It was a scrappy game with the hosts grabbing a draw late on. In the middle of the game Tesco deliver early and mid match we are faced with getting all the food stashed away. I eventually went to bed having taken my meds and focussed on getting up early to greet the visiting family.
Saturday and the news is that my youngest daughters family are ill, a tummy bug has laid them low so they are not coming today, maybe tomorrow. I am disappointed but pleased they are taking the sensible decision. I take to watching the tennis again and remain impressed as the British number one wins and gets a place in the semi final. My partner and I return to our favourite garden centre to buy “million bells”, a small plant that flowers profusely and does well in our garden. Of course while there we pop into the café and indulge in a bacon roll and a decaf coffee, which I have found my body will tolerate. Once home my partner head to the garden and finds homes for all the new plants. I do potter for a bit in the garden but I am not much help and end up watching the British tennis player play for the second time in the day and winning a place in tomorrows final.
The evening slides into world cup football I confess that I am suspecting that I am already beginning to get tired of it, even at this early stage. The patterns of play are all very similar and the creativity on display is low. Occasionally someone scores a really good individual goal or there is sufficient needle in the game to provide level of entertaining brutality. I watch the late game, take my meds and go to bed in anticipation of tomorrows visitors.
Sunday and I wake up to the news that Scotland have won there over night game at the world cup, which has pleased a friend of mine who stayed up in the small hours of the morning to watch the game. The next message was less happy, my youngest daughters family continue to be ill so will not be coming to visit at all this weekend. I am disappointed but it is for the best, you cannot be traveling around ill with two small children. There is a mountain of food to reorganise so there will be some freezer activity and reorganisation of the “stores” to be done. I get up and have breakfast and fill in my world cup wall chart with the overnight results. then catch up on drafting the blog.
When I come to take my morning meds I realise that I have run out of the twice daily steroid that I take. Because I delayed Cycle 8 by a week it means I am five days short of the daily steroid. I am not bothered really, five days without them is not going to do me any harm and if I am deemed unfit for Cycle 9 or I decide to discontinue to stop the chemo rechallenge I will be stopping them anyway from Wednesday when my next oncology review takes place. It neatly brings me back to the decision I have to make about continuing with the Chemo rechallenge. At the moment I do not know as I have pinned my logic on the out come of tomorrows blood results. If the PSA level is reduced (by how much is another question that I need to think about) then I have to seriously consider continuing as it means the chemo is actively working and it seems illogical to me to stop a treatment that is demonstrably affective. Driving the PSA level to as low as I can get it seems to me be the aim of this treatment. If the PSA level has decreased by a significant amount in tomorrows bloods then Cycle 9 looks like the reasonable choice. What is a significant amount? To be honest I do not know, but I do know that when I see the results I will either get a feeling of “that’s good or not bad” or an instant heart drop moment of disappointment. If it is the latter then its probably time to stop. The drop in the PSA will have to have been worth the post chemo crap that I went through on this cycle, some of which I am still experiencing. It is a fine balance but I am craving a period of rest and a chance for me to recover some of my energy and a chance to build up some strength.
So for today I prepare for tomorrows bloods by drinking lots of water, to boost my platelet reading, and to potter in the garden till my energy runs out and I retreat to tennis and football on TV. Tomorrow is a crucial day, it is also the day the BT engineer turns up to put us on the fibre network. I have no idea how that works, I am hoping it is a straight forward process where he plugs things in and then buggers off and the world continues as before, given that my current broadband works perfectly well. In the meantime I will see if Radacanu can win a tennis tournament and whether Germany can beat Curacao football minnows.
While watching the British tennis player loose the championship final my new poetry collection is delivered. It is Idanre and other Poems by Wolfe Soyinka, which I discovered, or at least the poet, while watching a programme about Mahomed Ali. Wolfe Soyinka read a poem about Ali at the end of the programme. I only found out that he is a Nobel Prize winner for literature in 1986 when the book arrives. I try to read some of the poems and realise that these poems are going to need some time devoted to them.
My latest collection of new poetry from a new poet to me.
I spend the evening watching football and checking my emails. I find that there is a draft edit of my next poem collection from the person who is editing them for me. So over the next few days I will be going over the edit to see how much needs changing. For now its time for bed.
My life clock still repels the winds of change and time.
Wednesday and a day of torrential rain but also the day that my partners mother moved to her new care home, so at last she is somewhere safe and caring and not in a hospital. I of course got up late and spent most of my day finishing reading (what a luxury) Before I knew I Loved You, the sixth book in the Before The Coffee Gets Cold, by Toshikazu Kawaguchi. It is a lovely book and he keeps finding ways for people to travel forwards or backwards in time without changing the present. It is typically Japanese in sensitivity and delicate handling of emotions.
My reading for the day. I recommend it.
By mid afternoon I had finished the book and turned to the Queens Club tennis tournament for entertainment. So I watched two players slugged it out until rain stopped play, by which time my partner has returned home from seeing her mother into her new care home.
In the evening my partner wen tout with a friend for a meal and left me to do a Tesco order and to watch the last friendly football game England were due to play before the World Cup starts properly tomorrow. The kick off was delayed by an hour till 10 o’clock due due to the huge thunder storms in Florida, after which England won 3-0 against Costa Rica. It was midnight before the last kick of the game by which time I was ready to down my meds and get off to bed.
Thursday and I wake up knowing that today the world cup starts and my giant wall chart will need to be got out and activated. My partner goes off to the physio after bringing me a hot a hot water. I check my messages and news feeds before tasking my vitals. They are average, which is okay for me. When I finally get up I head for the shower, noting on the way that the heating had come on, so not only is it throwing it down with rain but the temperature had dropped markedly as well. I do not expect the heating to come on in June! Feeling clean and refreshed I cook myself a cheese omelette and tomatoes, take my meds and start on some life admin. Fiddly little jobs like checking the stray lotto ticket and paying the window cleaner by BACS. They all take time and are all inconsequential, unless of course the lotto ticket is a winner and the window cleaner is not suing you for non payment. Its amazing how “little things” can become monstrous for the lack of attention. Once again it teems with rain meaning that the tennis is delayed, so I start to draft the blog for yesterday and today. There is a final Tesco order to be done and organising for the visit of my youngest daughter and her family at the weekend. It seems that there is quite a lot to do before I get to watch the first world cup football match this evening and begin to use my giant world cup wall chart.
In reflective mood I was thinking about the course of my cancer experience and had the sense that this has been going on for a while with all its changes of medication and fallow times so I returned to looking at all the phases the blog has been through that reflect this process. There have been some prolonged periods of relatively good wellness and other periods where what was to happen next was in the balance. This current period of rechallenge is 192 days long, during which my PSA has been going down, so a reasonable period of success against the disease, but in which I have suffered more physically than since my original chemotherapy. So it seems I have to calculate the balance between how I am physically and what gain there is to be had from further chemo rechallenge. The PSA level as measured by Mondays blood tests will give me some idea.
BLOG PHASES AND DURATION IN DAYS
WELCOME ALL: 01 SEP 201 TO 01 SEP 2019 1 DAY INDUCTION DAY: 02 SEP 2019 TO 02 SEP 2019 1 DAY CHEMO DAY: 04 SEPT 2019 TO 05 JAN 2020 120 DAYS FINGERS CROSSED PHASE: 07 JAN 2020 TO 23 MAR 2020 77 DAYS AS GOOD AS IT GETS PHASE 1: 24 MAR 2020 TO 08 FEB 2021 322 DAYS AS GOOD AS IT GETS PHASE 2: 10 FEB 2020 TO 21 DEC 2021 315 DAYS ANTIANDROGEN: 22 DEC 2021 TO. 22 FEB 2022 63 DAYS AS GOOD AS IT GET AGAIN: 23 FEB 2022 TO 31 OCT 2022 251 DAYS ROCKET: 01 NOV 2022 TO 21 DEC 2022 51 DAYS ROCKET BOOSTER: 22 DEC 2022 TO 06 MAR 2023 42 DAYS RUN UP TO RADIO THERAPY: 07 MAR 2023 TO 17 MAY 2023 72 DAYS NO MANS LAND: 18 MAY 2023 TO 29 MAY 2023 12 DAYS REARMAMENT: 30 MAY 2023 TO 07 JUNE 2023 12 DAYS REARMED: 08 JUN 2023 TO 09 JUN 2023 2 DAYS CHEMO II: 10 JUN 2023 TO 18 AUG 2024 435 DAYS ANGINA ADVENTURE: 19 AUG 2024 TO 25 SEP 2024 38 DAYS CHEMO II THE RETURN: 26 SEP 2024 TO 13 APRIL 2025 199 DAYS MOVING ON: 14 APRIL 2025 TO 16 SEPT 2025 155 DAYS WITH A DASH OF STEROIDS: 17TH SEPT 2025 TO 12 NOV 2025 57 DAYS STICKY WICKET: 13TH NOV 2025 TO 01 DEC2025 19 DAYS CHEMO RECHALLENGE: 02 DEC 2025 TO today (11-06-2026) 192 DAYS
TOTAL BLOG DAYS TO DATE:11th June 2026 2476 (6 years 9 months 11 days)
I guess it will depend on how I view the balance and what I consider my priority, quality of life or longevity. Somewhere in there I am hoping for a sweet spot.
.
The evening arrives and I settle down after tea and watch the long drawn out opening ceremonies of the World cup. It takes hours to get to the actual first game, Mexico v South Africa. With football over for the day I take my meds and head for bed. Tomorrow is a chore day in readiness for the visit of my youngest daughter and her family
Tuesday and I wake up not quite as chipper as I was yesterday. I drink the hot water my partner brings me before she goes to the gym to do aqua aerobics. I read my messages and news feeds before taking my vitals. My blood pressure is still good and my heart rate is maintaining its lower rate. Eventually I get up and have pizza for a late breakfast along with my meds. I do the days crosswords and watch the women’s tennis from Queens. Over the course of the morning and afternoon I get to see two English women get through their first round matches. My partner returns for lunch and is then soon away to see her mother into the new care home. I continue to watch tennis and do odd cleaning chores. I find an interesting array of objects and bric-a-brac down the back of, and under the reclining sofa in the lounge. Amongst the debris was the pen top I had mislaid yesterday, so I am content with the outcome.
The garden guy arrives with a pick axe and sets about cutting back the bamboo that the neighbour had noted was up against their fence. The work goes well and in the end the bamboo is separated from the fence by a solid plastic membrane, which holds a pebble pit. There is no way the bamboo will clump that far again for at least seven or ten years, so it will not be any concern of mine. The garden guy then sets about weeding out the flower beds until he finally waved good bye.
All this time my partner and her brother were waiting for their mother to arrive at the new care home from the hospital recovery unit. At almost 5 o’clock there is still no sign of their mother being delivered to the care home. It appears that early evening is going to be the soonest. I continue to draft the blog and think about food for the evening and suspect that this might be a take away day. My evening will drift into the England women’s football qualifier against Ukraine tonight at 8 o’clock. While I wait to see how the evening is going to work out I get another version of the cover for my next poetry collection. The person doing the designing has done a really good job. There is a small tweak to make but I think the design is very clean and direct. I am happy with what will be the finished version.
It turns out that my partners mother does not get moved and the whole thing is delayed until tomorrow. So the evening slides by with two football matches and the final draft of the blog before I take my meds and go to bed hoping for continued recovery.
Monday and I am awake quite early so I have time to view my news feeds and messages and then take my vitals. My vitals appears to be good, the blood pressure is continuing to be regular however my heart rate seems to have settled a bit. This seems to coincide with my feeling a bit better and less fatigued. I get up and cook a substantial breakfast that I take my meds with. I settle down to start the draft of the blog until my partner returns from the gym. I poem that seems to echo my up turn comes to mind.
537 There is a sunrise In my heart as suddenly my fatigue takes flight. Unknown forces are at work in mind and body as I glimpse my old self reappearing. My heart rate slows, my breathlessness eases and for the first time in weeks I dare to think of training and of trips out. It is the tip toeing of the quality of life that sees me smile inside and sensing a happy heart. This sunrise warms me as I trust that this is not a false dawn. I’m on the up, and in the distance the death knell of chemotherapy tolls out. There has to be a life for it to be worthwhile to fight to live, and now I know what the balance is.
537 08-06-2026
My afternoon continues with reading as I try to catch up with my reading pile and to once again feed my brain. I feel like a chrysalis about to transform but have no idea what creature I will emerge as. Hopefully something colourful.
The evening goes by in a combination of tennis and an American police drama. I take my meds and go off to bed hoping my perceived improvement continues tomorrow.
Saturday and I wake feeling not so good, so I rest and take my time getting up. I brief breakfast and morning meds before I settle down to a day of sport. There is football, rugby, grand slam tennis and Australian Rules football. I sit and watch it all feeling fatigued and having little or no energy. My family get on with life around me until they go to the theatre in the evening leaving me to order an Indian take away to eat while watching England field two separate teams against New Zealand. It was an unedifying watch and was really no more than watching two teams jog about in the Florida heat. At the end of the day I watch Blade Runner 2049 and go to bed late.
Sunday and I wake up knowing I had a curry the night before, so I take my time getting up having taken my vitals. My blood pressure remains good but the old heart rate is still elevated. By the time I am up my partner is in the garden putting in the new plants she bought yesterday. I eat breakfast and then head for the garden, by which time the garden guy has arrived and is getting ready to mow the grass. My partner redirects the garden guy and soon we are all planting things. I rescue some large pots and plant up the impulse buy dahlias that have been sitting around for a couple of weeks. I also add additional support to my growing purple sunflowers and finally get round to planting the Rudbeckia seed card that a friend sent me. The garden guy empties some pots for me and transplants their contents into a spare area of the garden. So for the next few hours there is three of us working the garden until there is quite a transformation, everything is so much tidier and we have the next phase of flowering in place.
The garden has some spectacular elements to it. Some of the special stuff is purely by accident where plants have been moved to see if they will survive while others have self sown. I take the camera into the garden to see if I can capture some of the sights.
By early afternoon everyone is tired and we pack up the garden tools and tidy away the pots and plants. A final watering to make sure the new plants are settled in and we are finished for the day. My partner and I eat lunch and start to watch the Paris open men’s tennis final during which I start to draft the last couple of days blog. After a combination of tennis and athletics the family the evening meal and I settle down to watch Shades of Blue before finally taking my night meds and going to bed feeling more hopeful for tomorrow given my gardening activity today.
Friday and I wake up late. I am surprised that its gone 10am. I did not expect to sleep this deeply. I quickly check my messages and newsfeeds and then measure my vitals. My blood pressure is good but my heart rate is still elevated. Out of interest I weigh myself and find I have lost weight, about a kilo and a half. I put it down to no sweets and Lucozade for a while. I finally get up and make myself breakfast. It seems I have fallen into a habit of cheese omelettes and peeled tomatoes, which seems to sustain me well till the evening meal. With a late breakfast done I sort out the outstanding window cleaner debt and then settle down to watch the men’s semi finals at the Paris open tennis. Its not hugely inspiring so I draft the blog as I wait for the Tesco order to arrive.
Today is yet another rest day. It feels like I am not recovering as I thought I might on a reduced chemo dosage. It is disappointing but I have no other option but to keep going. I cannot see my going for another cycle unless there is a a big decrease in my PSA as a result of the current cycle. It seems to me that my next move is to get some Quality of Life for as long as possible.
Today the England women’s football team play Spain in a world cup qualifier, so my evening is taken care of. In the meantime I continue to wait for Tesco and for the garden guy to turn up and begin to tidy up the garden, probably by mowing the lawns and doing some weeding. So there will be a burst of activity and then I shall retreat back to my resting.
Well Tesco turned up but the garden guy did not. As for the England football team, they got their arses handed to them with a four nil defeat. I close the evening with my meds and a relatively early night.
Thursday. I wake tired, my partner and eldest daughter already out of the house. I go through my morning rituals and take my vitals. I try to take stock of how I am, my conclusion is that I am not in the best condition. I scribble a poem that reflects this assessment.
536 There is nothing to say beyond the desert of defeat. Crushed by chemo, ground by toxicity I lay alone, desperate, for in this instant I can see no glimmer of me in the future with energy. Quality of life is not in my grasp but an idea waved at me by caring medics. I am suspended, a strange fruit neither fallen nor ripened, waiting to be harvested.
536 04-06-2026
I check my vitals, they are okay but my heart rate persists a little high. I take a shower while I feel I have the energy to do so and then make a late breakfast. With food inside me I settle down on the sofa and start to draft an email in response to a poetry stanza discussion. I eventually get a draft done and sent. My partner returns home and is happy that some of the issues related to her mother have been sorted as a preferred care home is going to take her early next week.
The afternoon is full of women’s semi final tennis as I rest and see if the paracetamol helps. The paracetamol sees me through the Paris semi finals and into the evening. The family eat tea together and I then order a Tesco delivery for tomorrow. With that done I spend time down loading a new channel onto the TV so that I can watch the new Brokenwood Mystery series. I check the poetry stanza discussion that is going on and note that it seems a poetry celebration at Christmas looks like a popular option. At the end of the evening I take my meds and head for bed.
