Wednesday, first morning without the boiler, so I’m not getting up any time soon. I hunker down with coffee, toast and a new poetry book that a friend has sent me. However dead on 9 o’clock I am on the phone ringing the people who installed our heating system pleading for an engineer to come and rescue us. To my great relief they are able to send someone between and 12am and 4pm. With a sense of relief I settle down to read Beyond the Brink is the Beginning, a collection of poems by Richard Wain. The collection is a themed one around hope for the future rooted in faith in nature and interpersonal recognition of each other. I think that’s the message. I read the whole collection and all the notes that come with it. Its a strange mixture of feelings that I am left with. The sentiment is good but it feels naïve to think that somehow nature will lead to a self repaired better world and all we need to do is recognise it and the sameness of each other. I could not help feeling that the the tipping point for humanity has come and gone. It made me aware of how powerful the natural processes that drive humans are and that they are beyond the real consciousness. Its like the old example of earth worms. They are crucial to the ability to create viable soil and therefore crucial to the food production for humans, however the worms just do what they do without any idea or conscious appreciation of what they are doing in relation to the whole system. So it is with humans. True we have some appreciation of some of our process and relationship with nature, but I would contend we are still unaware of the fundamentals to the extent that humans can adapt quickly enough. An interesting start to the day and not yet out of bed.

Finally I get and choose my clothes for a cold house. As a result I drag out my super thick jumper and layer up. Looking like an Inuit I go to the Shed to retrieve the electric fan heaters that are stored there.

The garden is frost covered and looks attractive but would of course kill me if I linger too long. Back in the house I set the up to warm the working members of the household while we all wait for the engineer to arrive. I go to the sunny lounge and start to draft the blog before reading the stricken boiler cupboard for easy access by the eagerly awaited engineer. Lunchtime arrives so as I settle down I become aware that there is a tense telephone call going on. It turns out that my partners carer has fallen over and broken her foot. There is a short period as everyone making decisions on what is best to do. The upshot is my partner and eldest daughter are whisked away by my sisters brother as they head off to deal with the situation. I remain at home waiting for the boiler engineer to arrive.

So while I wait I check the mail and find things that need to be dealt. So I send photos of letters to the solicitors and try to understand some advice that has been provided. In the end I send more emails to the solicitors in essence asking idiot questions and declaring my ignorance. While I am doing this admin the engineer turns and starts to give my system the once over. It appears to work. Sods law really, one moment not working and then being fine when the engineer looks at it. Like going to the doctor to find the pain has gone.

My partner rings and tells me that her mothers carer has been attended by a large number of paramedics and that she is going to hospital. My partner and her brother have decide to stay with their mother tonight, while my eldest daughter goes to the hospital with the carer. I prepare to travel with a bag of clothes for my partner but my niece has agreed to pick them up and take them over along with her fathers requirements. She picks them up and I settle down to keep a watching brief on what is going on by messaging my eldest at the hospital. My youngest daughter rings me and I update her. I take the opportunity to order an Indian take away so that I am fed if I need to go anywhere. The evening is full of messages and conversations. My eldest daughter is being a star at the hospital as she hangs on for the carer to be taken up on the ward once her fracture has been plastered or booted. I keep checking the boiler and the radiators to ensure the boiler is still working. The temperature of the house is taking a long time to recover as the temperature outside is dropping rapidly to minus 2. Inevitably everyone enters the waiting phase as we wait in our various situations doing what we can and seeing what happens next.

The evening goes on in this fashion for sometime. I am sitting at the home base beginning to prepare for my oncology review tomorrow. It a phone appointment so I need to be clear about what it is I want to ask and discuss. I’m expecting the arithmetic to be good enough for me to be given three more cycles of chemo and perhaps be seen in person in the new year. This would at least give me a clear run at Christmas. I need to get back to training at some point but I noticed the display on the row has gone blank again so there is a battery juggle to be done. For the moment I watch Shetland and await news from the hospital. One o’clock rolls round and my eldest daughter is still at the hospital with the carer as she goes for yet another x-ray. Its going to be a long night for my eldest and the rest of us. I take my night meds and settle down to wait for my eldest daughter.

Tuesday, I wake to my partner having gone to work. Today I decide to make an effort to throw off this cold. So I breakfast, take my meds and write a to do list: The result is that I achieve the following: 1. I get the meters read and sent, 2. I drain the water butt, 3. The squirrel feeder gets filled, 4. the garden camera gets down loaded, 5. the kitchen is cleared, 6. I get all my washing away, 7. all the house bins get emptied, 8. The dustbin gets put out, 9. the outside security light gets checked, 10. the Tesco order get taken in.

Its now the evening when my partner and I drink a brandy because the bloody boiler has chosen the coldest night of the year so far to stop working. I balance this against getting a lovely letter from a friend, receiving the poetry book they have sent me and having an unexpected call with a friend. Mostly a good day then, but tomorrows to do list writes itself with 1. Fix Boiler at the top. So its nights meds for me and bed. I was contemplating another Lemsip but it probably would not mix well with brandy and my meds. I did read the packaging information on the Lemsip to see if it mentioned alcohol specifically but it does not, what it does say is that its not suitable for people with enlarged prostates. Now the question is does a cancerous prostate count as an enlarged one or not. Bit late now to think about that, getting rid of my cold was the priority, but tonight I take my night meds with hot water.

Monday and I wake up once again in the spare room and tentatively check how I am. I think I am getting better. My partner brings me coffee and toast and I ease myself into the day. I take my morning meds and then I start to write letters on my laptop. Its too soon to go to the Shed to write letters. I have a morning Lemsip and then start to get myself ready to drive my partner to her afternoon hospital appointment. Before we go we have bacon sandwiches.

I am not sure how I feel as I get ready to drive but once I get settled behind the wheel I am okay. We arrive at the community care centre and wait in the reception area. My partner gets called and Listen to another episode of the Infinite Monkey Cage. My partner soon returns and I drive us home. The letters I wrote this morning need printing off before I am able to get to the post office to send them. When I do get there the post box is nearly full. At this time of year the small box tends to get fully stuffed. I go home and complete the contents page for a poetry collection and I also edit the bio and the dedication. Tea time rolls round and its time for another Lemsip.

The evening is all TV before I take my evening meds and wash them down with my final Lemsip of the day. I am taking myself out of quarantine tonight so I shall abandon the spare room. I hope I have made the right decision but already I have a growing to do list waiting for me. Today has been a minimal day but my energy reserves have all gone. I need to pace myself to recover properly.

Sunday and once again I wake up in the spare room as I continue to quarantine myself with my crap cold. I’m down to my last Lemsip. I do wake up about 9am and like an automata get myself on the scales for my Sunday weigh in. I am 97.3 kilos, exactly the same as last week, which is pleasing as I have not been able to train this as a result of my York trip and this bloody cold. On the cold front, I detect improvement, my nose is not quite as runny, I seem to have stopped sneezing and the Lemsip appears to be bringing relief. My partner brings me coffee and toast and like a trooper brings me more Lemsip from the shop. I take my morning meds washed down with Lemsip and settle down to see how I feel in the next couple of hours.

I spend my morning changing the Tesco order in anticipation of taking my partner to the hospital tomorrow for a quick appointment in the afternoon. It would be Sod’s law for Tesco to turn up while we were out so a Tuesday slot seem a sagacious choice. I spend time checking to see if I can find Christmas and birthday ideas on the internet but to no avail. I still feel rough but I am beginning to feel guilty about locking myself away and steadfastly staying in bed. I take this as a good sign and wonder about just how compromised my immune system is given my cancer and the chemo and try to gauge what is a reasonable recover time for me. My partner is going to see her brother this afternoon so I might risk a bowl of soup and a watch of a rugby match on the TV in the lounge. I have a growing to do list, including writing letters to several people but at the moment they would be just infection risks so I hold off at the moment. I have my next oncology review in four days and I am thinking about what I want to say and share adn whether they will just look at the arithmetic and sign me up for another three month stretch on Chemo. My guess is that this is what they will do and then call me in for a face to face annual review in March sometime unless the bloods monitoring goes awry or I get further symptoms. I guess that is all they can offer at the moment as from their perspective I’m doing as well as can be expected. My basic issue is energy. The chemo side effects are mostly fatigue, and as people point out to me I am 75 so should expect to slow down a bit, but that is not how it plays out in my head. I wonder sometimes if there are drugs that would give me a lift, a quick snort of cocaine perhaps or some “uppers” but I have never been into that as I never liked the idea of being out of control, certainly now with a body full of meds it would seem a foolish adventure. So I will settle for a dish of soup and an afternoon rugby match and then I will reassess how I am.

I do have one question; why do lips dry and crack when you have a cold. I am regularly using Vaseline “lip therapy” at the moment. It one of those addition irritations that goes with the cold. Just one of those little mysteries I guess.

My plan for soup and rugby goes okay so I stay in the lounge in my sofa spot and see the evening through on TV. A friend unexpectedly calls me whilst traveling through Leicester on her way to Leamington. I think she said she was visiting a dog breeder, but I may have misunderstood. It is a short call but a nice surprise. By 10:30 I am done, spoonless and take my self off to the spare room again to finish drafting the blog, taking my meds and washing them down with a final Lemsip of the day. My body chooses now to have a hot flush, so I sit it out before I try to settle down and sleep. I am tired but I am getting hints that I am starting to recover from my cold, it just feels like its going to take a while to recover from this one.

Saturday I wake in the spare room with my heavy cold for company and I feel absolutely crap. My blood results came in last night, they are okay. The raised potassium is due to me hitting the chocolate hard over the last week or so. No more chocolate or ice cream. The internet tells me I can have jelly beans in moderation and of course fruit.

I quarantine myself in the spare room, take to my bed and do Lemsip and toast before spending all day napping, Lemsiping, and watching the laptop. Six o’clock I eat and return to my laptop in bed. That’s me for the evening till night meds, Lemsip and hopefully sleep. That’s me done, I’ve dug in and will wait it out now. Good night.

Friday and I am awake at 7 o’clock with a headache and feeling crap. For a change I am first up making hot drinks which I take back to bed and down a couple of paracetamol. I feel crap, did I mention that? My partner takes pity on me and brings me toast and jam as I wait for the paracetamol to kick in. It does begin to work and I get up and dress as I have to be at the GP surgery for 9:05 to have my bloods done. While I dress I check my temperature and find it is 36.2, so its normal. I pull on my thick beanie and jacket and stuff its pockets with masks before heading off to the doctors.

Arriving at the surgery I don a mask and book in. I sit at the back of the reception area, a throw back from school days when you stood more chance of seeing the blackboard cleaner winging its way towards you from an infuriated teacher, those were the days. I am called in quite quickly and in a trice I have my jacket off, hand the bloods form to the nurse and start to slap my forearm to raise a vein, what used to be called “Feltham applause” a term derived from the prevalence of drug taking at Feltham Borstal back in the day. It’s one of those prison black humour things that has stayed with me after all those years of prison work. Having applauded my vein, I clench my fist a few times by which time the nurse has found the vein and is in with the needle. “Relax your hand now” she says and in a trice she has two vial of my blood out of me and a fluffy cloud of cotton wool on the entry hole. She tapes the cloud and then labels the vials. We say good bye and I am off. The whole thing takes as long as its taken you to read this. Pretty impressive I think, a good example of patient and nurse working in harmony to get the job done.

I walk home via the village co-op to buy a paper. By now my nose is running and I know I am not going to have a fun day. Once home I check the heating is on and make another coffee to take my morning meds with and to see me through doing the crosswords in the paper. My nose runs like a tap and I ache, this is going to be a cold. I have a sense of real unfairness. I have made the effort to see friends in York to help take care of myself, I have battled to manage my cancer and now I get a cold. At some point I will have to make a decision as to whether or not I take an Actifed to dry my nose up. Its a tricky decision as I am never quite sure how it interacts with the chemo and other stuff I take and whether it just prolongs the cold by a couple of days. Having done the crosswords and the meds I start to draft the blog and to top it all I get a hot flush. Yep I am still getting the hot flushes due to the hormone suppression treatment. Mostly they are random, either day or night and all I can do is sit them out and hope they pass quickly. By now its already 11:30 and part of me is frustrated that I am sitting here, good for very little apart from a little light admin. I do not feel like I am pulling my weight and I am conscious that pre jab Roland put a load of washing in which is now waiting to be hung out to dry. I’ve no energy. This is one of those hidden tricky days where I am good for nothing and already hoping tomorrow is going to be better.

In a tortoise flurry of activity I check the post and there is nothing from the solicitors only Christmas mail litter to recycle sofa. While on my feet I hang my washing and then settle back on the sofa sneezing and dabbing at my runny nose. Its time to chase the solicitors again. This is the mundanity of cancer, the slow grind of trying to maintain a normal routine of every day life against a disease that slowly and quietly chips away at every aspect of ones being. Some I can fight back on, I’m good at the headology drugs but the physical stuff is an area where I am dependant on the drugs the medics have me pumping in and my only indicators are in the arithmetic my blood results and my vitals give me. Today my vitals are okay and after the witching hour tonight the blood result fairies will deliver the next batch of arithmetic. As I have said before, how I am is in the logic of the arithmetic. So I brace myself and gather up what spoons I have to see me through the rest of the day.

I sleep most of the afternoon with a stinking cold. I go through the evening sniffing but get to midnight when my blood results come through. My PSA has dropped by a measly 0.1, but it has dropped. My potassium has sneaked up above the normal and my eGFR has dropped to 56, 4 points off the normal of 60. I go to bed to in the spare room to nurse myself through the night.

Thursday, I wake to my partner going off to work to Real World work that includes driving and face to face meeting. I get up slowly feeling washed out and dress before having a simple breakfast and taking my morning meds. Its taking a while to get going today and I wonder if my trip to York has taken more spoons than I realised. My overwhelming feeling is that of being cold so I check the heating and find it is not on. I immediately turn it on as I hear in the background that the fuel companies are raising their prices by 5% in January. This against the background of the Chancellor pretending that his Autumn statement was making people better off, as it turns out all the think tanks suggest he is not telling it how it actually is. Its all spin for an election, I guess we will find out how gullible the British public is when the time comes.

I start to work on my poetry collections with a view of getting them ready to publish. It is a tedious process as I literally go over them word by word, punctuation by punctuation, In the process I begin to doubt myself about what I have written and he format. I change some things adn not others. I take a break for lunch time soup and then plough on. There is a short time out as I draft instructions for the solicitors to be signed by my eldest daughter in due course once the solicitors send us an authorisation form. With that done I return to the poetry. In the process I discover how to take a screen shot with buttons I did not know I had on the key board, live and learn eh!

They call my poetry
Bony.
No flesh
No story.
I open my eyes
There is light
And wonder,
this is enough

Eventually I am down to writing the bio that I assume they will want for the book and a dedication. I cannot face doing a contents list so decide to email the Amazon publishing guy to see if I have to do it or if they will. I suspect they will do as little as possible and I will have to flog my way through making one for inclusion. I remain cold but clear the kitchen, empty bins and put out the recycling before making the effort to take my vitals. I had spent part of the morning updating my Excel spread sheet for my vitals so I know that overall they are remaining stable in the face of the chemo.

Tomorrow I am having bloods taken to monitor the effectiveness or not of the current chemo controlling my PSA levels. These will form the basis of my oncology review on the 30th of November. So tonight I shall be drinking a lot of water to ensure that I am hydrated as this affects my platelet levels. Its all part of giving myself the best shot at getting the arithmetic right. I’ve not trained today as frankly I could not face it. My partner returns from a long day at work and cooks tea. Its unclear if she is doing her singing lesson tonight, all I want to do is be warm and get a good nights sleep. I feel I am slipping down in energy and note that the weather folk are predicting snow soon. I am not amused. The evening arrives and I do my best to settle down and feel warm before taking my night meds and getting to my bed. Of course there is a lot of water to be drunk before the morning comes around and I trot down to the GP surgery.

Wednesday and I wake up in the hotel bed and get myself into the shower to get my day started. I get packed up, take my meds before heading to the restaurant. On the way the plan is to put on bag into the boot of the car but the boot wont open. My electronic key will not work so I take out the hard key and open the car to be met by the alarm going off. The car will not start. Not until I press the alarm off part of the key fob does it stop. I tentatively try opening the car using the keyless method and it opens. I retreat to the restaurant and ponder my options of what to do about my key fob. Breakfast over I return to the room and take my key fob apart and note the battery type in the fob. I reassemble the fob, gather up my belongings and go to reception to check out. Fortunately when I get to the car it opens via the fob. I drive to the local Tesco store and buy batteries for the key fob and a plant for the friend I am going to see.

Feeling confident I return to my car but find my car will not respond to the key fob. I mutter unkind words and set about changing the battery in the key fob hoping that this is what is wrong. The moment of truth arrives. Ta Da! the car opens and I am able to get on my way having stored spare key fob batteries in the glove box and in my traveling office back pack. I arrive at my friends only marginally after the agreed time and I am met by my friends old dog a new one that I do not recognise. It turns out Daisy, the new dog has found its way to the family via various foster families. My friend makes me coffee and we begin to catch up and talk about life and the things going on. Its very helpful to talk to someone outside the immediate family to get asked questions to make mem think and to explore what is going on and why it is going on. Time flies by and it is all good time, I leave feeling its been useful in the here and now but also that it will be useful in the future as I have time to process the conversation.

I drive to another friends house to visit over lunchtime before heading for home. I am kindly fed bacon rolls and there is time to chat some more before she has to prepare for work in the afternoon. I am mildly wired as I realise that I have been drinking caffeinated coffee after a long period of drinking decaf coffee. I drive to the motorway and set off south, I realise as I am driving that my eyes need to be tested as I can see better without my glasses than with. As time goes on it gets darker and I think it is going to rain until it dawns on me that the darkness is night drawing on. I had forgotten that the night now draws on early in the day. My drive home was slower than usual.

I get home just before my partner returns from seeing her mother. I am tired and my partner and I settle on fish and chips for tea. I catch up with the last two days crosswords and move on to an evening of TV wall paper. Eventually I draft the blog and take my night meds. Thankfully I have a free day tomorrow to reflect and to rest.

Tuesday and I wake in the hotel bed and go through my routine of email, message and cyber litter checks. I go down to breakfast and find all I want is grapefruit and toast. I start to prepare my Christmas lists and do some Christmas research, I also finish reading Tom’s Midnight Garden. I take a trip to the local Tesco and use the cash machine adn pick up some odds and ends. Just before lunch time I drive to my friends house and have lunch with her. We have time for soup and a chat before she has to go back to work and I wander off to York. I am feeling quite spoonless so return to the hotel and continue to do Christmas research.

I find the COVID enquiry is on and its Prof Whitty’s turn, its a fascinating watch. He is clearly a bright bunny and is very good at being clear about what he is saying and explaining why he did what he did and who was responsible for what. Tea time comes around and I head for the restaurant knowing exactly what I want. So a pepperoni pizza and strawberry ice cream later I am back in my room in time to watch The Great British Bake Off. It turns out that this year the final is going to be all male, an unusual outcome.

I set about drafting the blog before I take my night meds, pack what I can and settle into bed for an early night. Tomorrow I see my mentor.

Monday and its a relatively early start as I am of to the dentist for an emergency filling at 9:45 before I can get on with the rest of my planned day. Of course one has to shower before a dentist appointment and foregoes breakfast to forego the embarrassment of the dentist tutting at food between the teeth even though they have been brush and mouth washed . I check the appointment time with the receptionist before starting my preparations including morning meds.

On the dot of 9:45 I am in the dentist reception area where I play with my phone till called in. My dentist is vey good and is into doing the work straight away and explaining what has been lost, what has failed and what the options are. We agree a temporary filling for today and a think about crowning the tooth. By the time the temporary filling is done I have had my think and book an appointment in the new year to have the offending tooth crowned. My dead sisters Christmas present to me.

Once home I pack for my trip to York. The garden guy arrives so I spend time listening to him and telling him what needs doing, before taking the opportunity to fill the squirrel feeder. I have no cash so at lunchtime I and my partner walk to the village co-op only to find that the cash machine had run out of cash. Once home I do the final checks on myself and the packing and then head off to York. The drive is reasonably good with one comfort stop and the taking on board of a baguette to fuel me. At no time did I use the SatNav, I know this journey well now. On arrival at the hotel I automatically tapped in my car registration and then signed in. My room is okay and I settle in, making the usual “I have arrived” messages, then draft the start of the blog before getting on with having a nap. So far today the spoon expenditure has been high so I need to recoup some spoons for the evening.

At 18:45 I pick my friend up and return to the hotel to have a meal. Normally it would have been a restaurant but my friend is still fighting hard against the fatigue of long COVID. We dine and chat but by half past nine it is clear that my friend is very tired so I take her home and return to the hotel to watch the end of the England v North Macedonia with a large black coffee. Its a disappointing draw, so I return to my room and daft the blog while watching the news. It’s been a long day but strangely I do not feel as tired as I expected to be, I am taken aback by my friends fatigue and it brings home to me how lucky I am to have good days and to be able to fight the way I can. I take my night meds and read until I settle down in this strange bed to sleep.