Sunday and I am up making warm drinks quite early. Sunday is my weigh in day and today I come in at 99.7 kilos, the lightest I have been for a while. I had already designated today a reading day so after some toast I start to read. I have three books that I am reading at the moment. My day starts with finishing the re-read of Terry Pratchetts’s Night Watch. Its a terrific book and one of his books that on occasions make me laugh out loud. A friend once described him as the modern day Johnathon Swift.
One of my favourite re-read
As the day goes on I read in between rugby matches and a light lunch. The reading is punctuated by the garden guy coming to mow the lawns and Amazon delivering me new shorts. The two other books I have on the go are Samantha Harveys’s Orbital and Ryka Aoki’s Light from Uncommon Stars. One, Orbital is about a group of people’s experience orbiting the earth the the other is about a deal made by a violinists deal with the devil.
I read and draft the blog once the rugby is over and easy into the evening and a mixture of TV and reading. Tomorrow must be a training day and a day where I try to work through my growing todo list. So having had my lazy Sunday it is back to keeping things organised.
Friday and I wake up and find my partner who is off to the gym. I get up, having taken my vitals and get into my training kit. After a brief breakfast and my morning meds I get into the garden and start to tidy things up. After preparing another flower bed ready for my partner to sow the flower seeds she bought the other day. I am hot and tired when I get back inside the house for a rest, just before the post person delivered a large envelope addressed to my eldest daughter. And then the fun began, the letter was from HMRC.
Note the date of this letter!
Note the date of the letter they received
Yes that is right the delay in responding, which they apologised for, was 76 weeks! What they were demanding was a tax return (self assessment) for the tax year before my sister died! They have sent the letter to the family member who was the executor for my sisters estate, which was wound up 53 weeks ago! Only Her Majesties Revenue and Customs could be so inept, idiotic and ineffectual. But it meant that I and my eldest daughter spent the rest of the day going through the accounts from my sisters estate and talking to HMRC in between emailing and talking to the accountants to who sent the letter to HMRC 76 weeks ago. There are some interesting complexities but as the estate is closed there is no one to complete a tax return, is raises some issues. Can HMRC get dead people to fill in a tax for what is deemed a personal tax liability. Can HMRC collect taxes from dead people? That is called death duties that in this case have all been paid, so is this double jeopardy. After a day of having to drag myself through all my dead sisters papers all over again I am battered and homicidal, I just drag myself into the evening and watch TV until I take my meds and retreat to bed, with a sense that there will be more HMRC nonsense ahead. It feels as if I am stepping into a Kafkaesque world.
Saturday and having put HMRC behind me for at least the weekend I wake up and find my partner still fast asleep. Eventually I get up and like my partner have breakfast, take my meds and get ready to go shopping. Its a raid on Sainsburys, cash from the ATM and a pile of fruit and veg with a smattering of meat. Once home its rugby for me but its interrupted by the arrival of a mystery parcel. When I open it I find an official Lions baseball cap for the coming Lions tour. It can only be from one of my friends, so I message him and send him a picture of me in it.
My new surprise Lions tour hat.
I watch a rugby match and when its over I swing into cook mode. Tonight I am making Mary Berry’s pork Stroganoff. It goes very well and I make two versions one using soured cream, and as my eldest daughter does not do well with dairy, a white wine version. it goes down well. By the time I have eaten I am knackered and escape to Dr Who ( not impressed so far) and then take to drafting the blog. The evening ends with meds and some reading before putting on the finger splint and settling down.
Thursday and this is the first day of Cycle 25 of my chemo. I started it on the 10th of June 2023 so I am just four weeks and a bit off of being on the Enzalutamide for 2 years. Apparently this is good. Officially this drug is a nonsteroidal antiandrogen that inhibits the binding of testosterone to the androgen receptor. In theory this prevents the testosterone from stimulating the growth of cancer cells. In combination with the 28 day injections of Degarelix it seems be holding my metastatic prostate cancer at bay. The Degarelix is a hormone therapy, it is a gonadotropin -releasing hormone (GnRH)that works by preventing the pituitary gland from producing GnRH. It is GnRH that stimulates the testicles to produce testosterone, so by blocking it, Degarelix lowers testosterone levels in the body, which is also supposed to slow or stop the growth of prostate cancer that rely on testosterone.
Of course there are down sides to both these drugs. The list of common and possible side effects is huge but mostly fatigue, which is not surprising if I have no, or next to no, testosterone. Yet my oncologist keeps telling me that hard exercise is the best way to counter the side effects of the drugs. A neat catch 22. No testosterone so train hard! Bastard. But it explains why I continue to clamber on to the rowing machine and try to work up reasonable sweat. But not today, while my my partner is out for a walk with an old work colleague I plan to attack the garden, clear the access to the compost bin and remove the unsightly and falling apart green plastic greenhouse. First there is a fried egg sandwich to be eaten and morning meds to be had. Thursdays is the addition of my vitamin D tablet. Soon I shall rattle with all the pills I take.
Having clambered into my work trousers and got my feet into my “steely” boots I hit the garden and start to raise the skirts of the fir trees and clear the path to the composting heap in it is wooden crate. With that done I can prepare the top bed for my partner to start sowing a wild flower bed. As my partner returns form her walk I start to take down the old and shabby plastic green house. She joins in and fairly soon we have it down and bagged ready to go into the Hippo bag. By the time I’ve organised what is to go into the Hippo bag, what needs keeping till the new storage shed arrives and what is rubbish I am verging on the knackered. The last thing to do is put all the tools away and divest myself of my working clothes. Finally I can sit down and down a Red Bull and a Crunchie.
Now there is room for a flower bed that will get the sun
No more unsightly shabby plastic green house. All part of plan.
With everything away I take to the sofa and check my emails. I pay the deposit on the new garden storage unit that’s been ordered and I also get a response from the a publishing support organisation that I contacted. They are coming back to me next week, it would be nice to have a UK based support team rather than the Americans, but I guess there could be a down side. The Americans just wanted my money and were prepared to deliver for it, the Brits might be a bit more “fluffy”, we shall see.
So I head into the evening feeling pleased I’ve cleared the garden but also feeling that there are things I need to do, however I am tired an its a football night, so I shall watch a game and get an early night as tomorrow I shall be filling a Hippo bag and continuing to shape the garden, which means some rock moving. I also need to train, remember the testosterone and the chemo affects, that’s where the fight is.
Wednesday and I wake up after a decent nights sleep. My partner brought me a hot water and then left to see her mother with her brother. I took my vitals, which were good so I got up and in a fit of optimism donned my training kit. Before making my way to the garage I take my morning meds. I strap onto the rower and decide after yesterdays efforts to go for a thirty minute session. I go for it, in the sense that I start off hard and try to maintain it for as long as possible. The result is that by the end of the session I have achieved a personal best. I am surprised but feel chuffed by the experience.
Yea go me, a new PB. A surprise after yesterday’s session.
I record the session full of self congratulations and then tuck into toast and Lucazade. Having recovered from the row I shower and freshen up. By the time I am sparkling fresh my partner has returned just in time to see me drive off to the chiropodist. Arriving at the chiropodist I settle into the chair and de sock myself. What follows is some polite chit chat as my feet are pampered and all my troubled nails are put back into working order for the next two months. At the end of the session my feet feel joyous and I pay, book my next session and then literally skip out of the chiropodist.
Once home I offer to take my partner for a coffee at the revamped garden center close to us. We arrive and order scones and drinks and then spend time looking at the revamped facilities. When we had finished we wandered round the place selecting packets of seeds and looking for inspiration in the food freezers. Back at home I feel I am running out of spoons (energy) and settle down to listen to Meet David Sedaris interrupted only briefly to help change the bed linen. I also respond to a message from a friend who was resting after a “procedure” yesterday. I of course wished him well and hoped he had whiskey to drink and idly ask what the “procedure” was. His reply was one of those that makes one wince. So having retired my friend is now facing recovering from circumcision! I will of course be sending him erotic literature!
I start to draft the blog knowing that tonight I shall watch a crucial football match and then strive to have an early night as tomorrow I hope to write letters. I mentioned yesterday that a friends daughter did a charity run for cancer with my name on her back. On the back of this I wrote a brief poem, which I share here.
446 Her mothers asked her "do you want to put a name on your bib?" They explained it could be, a charity, a person, an organisation. Her reply was, "Roland, how do you spell it?" I saw the photo before she set off on the muddy race. This ten year old made me speechless and humble, by her spontaneous thought. I've never been run for before, and maybe never again, but in that moment, I never felt so grateful and touched beyond words. Cancer like poetry reaches out unexpectedly and finds compassion.
Tuesday and the excitement of the Bank Holiday weekend is over, it means I have to get back to training and being active, however apart from training my days “to do” list look more “adminy” than active. So after making my partner a cup of tea in bed and doing my vitals, reasonably good, I get up, take my morning meds and head for the garage and the rowing machine. There can be no compromise today it has to be an hours row, so I set the session up and get underway with my ear buds in and radio two playing. Its a very tough session indeed, my body really does not want to do this with the result that the final outcome is not up to par but will have to do for the day.
Sessions like this hurt, I am 500m off my usual standard.
I record the session and make myself breakfast and notice my partner has got the incinerator out in the garden and is burning documents. No complaints from the neighbors today. I join her in the garden and we walk around it looking at what has come up and what work needs to be done, I explain my plans for the new shed. I’ve already researched racking and floor covering for it. After a quick lunch I move onto the main challenge of the day, mending my laptop. Its taking me hours, I’ve run tests on the hard drive and the memory and they are all tickerty boo, so it has to be the BIOS system and when I get the dreaded error code that tells me my system is corrupted at the point of loading I know I am in trouble.
I finally get to the point where I have to reinstall Windows from a software USB stick. Its going to take ages to do this as it has to create a file called “Old Windows”, so things could still go wrong. My guess is that this is going to take hours so I start to draft todays blog and plan a shower and other activities while the small note book grids its way to instillation. There is no guarantee that this process will work, patience is the watch word.
Bank Holiday Monday and there are just two things to say about today. Firstly it started with the surprise of bacon sandwiches in. What a luxury and a great way to start the day. Secondly, I’ve ordered a a new garden shed. This is great, its custom made, the size and design I wanted. Having driven to the garden center where the suppliers are based it was great to sit with the supplier and get down to business and cost exactly what I wanted. The bonus? a bloke came out to us by 5 o’clock to do the survey and confirm the details, what service. Now I have to wait while they build it, paint it and then come and install it. Even better they are going to take both of my old sheds away for the price of one! This is the start of Phase Two of the garden development, which I thought I would have trouble getting off the ground. This all comes from having a conversation with our neighbors yesterday while walking round the village VE day event. Its clearly good to talk.
On the down side I am trying to mend my other laptop which refuses to load, so i am running diagnostics and recovery programmer but will probably have to factory reset it. Hopefully my external drive has captured all my files. I can feel I have run out of spoons (energy) so this is where I leave the blog today knowing that I have night meds, finger splint and scar massage to look forwards to. Tomorrow there is much to do including more work on the poetry collection.
Sunday and I wake to a sunny day and my partner reading. After a bit of time I get up and warm drinks. After breakfast and the morning meds my partner and I wander into the village to look at the VE day celebrations. There were several displays of various aspects of 40’s life.
Even the bikers turn up.
Even Winnie turned up
Old time live entertainment, novel.
There are numerous such displays all round the village.
After much wanderings my partner and I return home where we have a late lunch and I rest by watching a football match. With the match at an end I return to drafting my partners family tree. During this time my laptop is trying to repair itself, a long and tedious process, which I doubt will be successful. As I work through the information that I have on the family tree I get a message from a friend that her daughter has completed her “muddy run” for charity in support of Cancer research. She had put my name on her bib as supporting someone she knows has cancer. I am very touched by the thoughtfulness. It is a complete surprise. I continue to fill out the family tree until I finally get to the point of where I run out of data and all that I can do is literally draw the connecting lines in. By then its time for tea and the family eat together.
I slide into the evening popping into to see how my laptop is doing but the screen is not changing so while Black Snow is running in the background I start to draft the blog. It is soon time to take my night meds, strap on my finger splint and try to get a nights sleep.
Saturday and I wake up in a groggy state and not sure why but I knew that this was going to be a low energy day. My partner brings me my usual hot water to drink and then goes to the gym. I listen to part of Meet David Serdaris before taking my vials, that are okay, but not optimal. Eventually I get up and make toast and try to pull myself together.
In order to be active I get all the materials and tools together to up grade the handrail on the patio. Its a small and doable job that I feel I can manage. So I am in the garden sanding down the handrail and then applying the wood filler. It begins to set quickly but I leave it to set fully and watch the first half of the early football match. At half time I return to the handrail and rub it down and then apply a coat of furniture varnish. By now my partner has returned and is pottering around. Having watched the second half of the football match and downed some paracetamol I return to the handrail to check that it is drying well. I’m pleased with the out come and then join my partner planting the last remaining plants that are waiting for a place in the garden and the swathe of pots that are part of the garden. With the plant in new positions I have a look around the garden and mentally note all the work that needs to be done. There is a lot of weeding to be done. While planting the plants my partner uprooted two horse chestnut trees that had rooted from conkers buried by the squirrel last autumn. I have planted them next to oak tree that was also curtesy of the squirrel planting an acorn. So at the end of the garden there is the start of a small forest to augment and eventually replace the ageing fir trees at the end of the garden. They will be big but that won’t be my problem but they will be a brilliant screen from the houses over the back.
I am now out of spoons (energy) and retreat to the recliner to rest and watch the football results come in on the last day of the championship. My partner and eldest daughter go for an ice cream at the village heritage V E celebrations. With the relegations and promotions sorted out I take to drafting the blog, followed by some up grading of my partners family tree.
The evening is TV and other stuff, which I cruise through, I’ve not the energy to do anything else but I have a mental “to do” list which I keep visiting. Its a dissatisfying place to be and all I can hope is that tomorrow I have more energy and I can train and go and explore the village festivities. Its one of those “itchy and scratchy” times with little energy and a lot of frustration.
Friday and I pan an easy day, so as my partner goes off to the gym I laze in bed and check my vitals. All is good there and then I spend sometime thinking about what I am going to do with my next poetry collection. Of course it leads me to write a poem and in doing so it gives me the tittle of my next collection. I decide it will be called, the Cancer Years; ordinary brave.
445 There’s a lot written about being brave, lots of slogans and wise sayings but none seem to quite fit.
No one asks to be Cancer brave, it’s an unwanted accolade.
Quietly many men and their loved ones get on with things, each being brave in their own way.
There is no media fanfare or out pouring of admiration, nor is there a rush to do things, fund raise or join a movement, just the soft tread through the fear.
If there are tears they are shed privately once the mundane is done and there is a quiet moment to reflect.
Anger is dissipated gently, released in gardens, and in putting things in order in consideration of those to be left behind.
It is the resilience unexpectedly found in the depths that makes us brave in ways that can only be ours.
Ordinary people being ordinary brave in ordinary ways with one eye on the end of our days.
445 02-05-2025
I get up and get into my training gear. After a bagel breakfast I head for the garage and the rower. Its been 7 days since I last trained due to a combination of weekend and injection. Its got to be a meaningful session so I go for a forty five minute session. Its a real pig of a session and although I try to pace myself the end of the session is a real grind. I manage just over 8 kilometres so it could have been worse. It will do for a session after a weeks break.
A come back session which is okay
I record the session and then eat my lunch on the patio with my partner. After a chat my partner and I go to the local garden centre and pick up so gardening essentials. Once home my partner sets to in the garden and I start to draw up my partners family tree starting with my partners mothers side. It takes me ages to get all the people mentioned into the right generational line and then to sort out which line each person belongs to. The information is jumbled and there appears to be one or two people who do not fit the tree. I get as far as I can and before dinner is served I replenish my dosettes for the next two weeks.
The evening sees me drafting the blog while having one eye on the TV. Its going to be a lazy evening. tomorrow our village will be celebrating VE day so I expect there will be military vehicles rolling around and people doing strange things in uniform. Already there are poles appearing along the road so there will be unexpected informative boards everywhere. Rumour has it that there will be a fly past. I hope I can sleep with all the excitement, or maybe its just the desperation of having a Reform dominated county council. I go to bed full of meds and a sense of foreboding.
Thursday and I wake up early as this is going to be a busy day. So I make warm drinks for my partner and I earlier than usual. My partner gets up for a shower and is quickly followed by me. There is time for toast and morning meds and then I am off to see the hand physio. The amount of bendiness is measured and the scar tissue examined. The decision is that I should concentrate on massaging the scar with Nivea crème and using the night splint with the latex dressing. We agree that I should return at the end of July when six months of splint wearing comes to an end.
I arrive home and wait for my partner to return from her physio appointment and when she does we drive the cars to our local garage. My partner’s car get left at the garage for its newly acquired “crunchie” sound to be investigated. We return home in time for my partners friend to collect her for lunch. I sit on the patio, have soup and then I spend the afternoon trying to put together the contents of a fourth collection of The Cancer Years, for which I have no title for yet. At one point I take a break and draft another poem.
444 The drooping broom trying to sweep the lawn edge, this and a profusion of green is what I feel this May day. A sunny time that belongs in summer as the temperature rises. There is much to do but I do no stir, sitting quietly like the garden before me. “behold the lilies of the field for they neither reap nor sow”. I am not sure I can live Like that. So I find myself pen in hand jotting while birds sing and Spring takes a sprint start.
All these flowers, trees and plants do everything that is beyond me. When did I stop paying attention, let myself not listen, let myself not see? It’s time to put the pen; Down!
444 01-04-2025
Having written I return to preparing the collection. Mid-afternoon and the garage rings to tell me that my partners car is done. Thankfully it is only disc pads that needed replacing. My partner and I go and collect he car and return home. The resources to begin to make a family tree for my partners family have arrived so I start the process of trying to build a tree from the notes that my partner gave me a few days ago. It is a preliminary phase of sticky notes placed on a pre printed ten generational template. After an evening meal I start to try and build adn initial tree. By 8 o’clock its time for me to watch football. Its what I do until full time when I start to draft the blog, taking my night meds and strapping on the night splint before bed. Over the evening I have been thinking about ideas for more poems based on the dedication that I am thinking about for the fourth Cancer Years collection; “This collection is dedicated to men and their loved ones who quietly gets on with their life while fighting prostate cancer. We can’t all be VIPs but we are all, in our own ways, brave.” I think there very many men and their loved ones who are quietly being brave everyday without publicity, without doing things that they would not normally do and just want to live an ordinary life for as long as they can.
