Thursday and I wake late to a decaf coffee and a phone call from a friend. An excellent way to start the day. We chat for quite a while as my friend makes her way to the the first chores on her to do list of the day. We are both battling in our own ways. Conversation over I get up, check my vitals, have breakfast and then wonder what to do, so I return to reading Chalmers book on The Conscious Mind. For anyone that has read it, I need a conversation about Zombies, yep zombies, apparently they are an important philosophical concept in the argument about the nature of consciousness. My reading is only interrupted by the post , which is renewal notice for mail redirection. I complete the renewal and return to the book and its zombies.
At lunchtime I go out and do business with my solicitor and then return home. I quick trip to the village shop and the café and its time to go home and relax. I sit in the garden chatting to my partner and then get on with nothing in particular. The garden guy arrives and we have a strategic chat about the autumn offensive on the garden. Part of the garden is going to be remodelled and some trees removed. I return to reading my book, this slides into the evening and world athletics, films and drafting the blog. By midnight my spoons are spent and I go to bed, with a sense of well being and a sense that I am getting over the side effects of my Monday injection at last. I’m looking forward to a good day tomorrow.
Wednesday and I wake up slightly groggy and tentatively do my mental check on how I am. How I am is still sore but maybe a little better, it still fills as if someone has stuffed my head like a teddy bear. I get up do my vitals, which continue to be good. I go to the kitchen and fix some toast and coffee and sit on the sofa so eat. I discover that the world athletics is on TV so watch the early 200 metre rounds and some preliminary field event rounds. I’m really waiting to see how my stomach takes the toast and coffee along with the morning meds. I think at times I have become hyper vigilant about my physical state, but of course this is all about anxiety. My partner goes off to see her mother and I drag my training kit on and go to the garage. It has to be another 45 minute session to be of any use to me.
I am putting on my ear buds when I realise it is lunchtime and bloody Jeremy Vine is on radio two so I switch to radio three and delighted to find a Promenade concert on. Its brilliant as the audience get to choose the component parts of the concert as a symphony. The conductor and the orchestra, Budapest festival orchestra, do not know what they will be asked to play. So the radio three audience chooses the introduction, there are then four movements to include Beethoven, Dvorak, Glinka, and Tchaikovsky. The other music is chosen by the audience voting for suggestions from selected audience members. It is a brilliant way to have an evening of classical music. So I row to Tchaikovsky and I feel uplifted and remember all those concerts I went to as a callow youth. So the session goes by with classical music in a really fun way. Its not my best row but I feel fed and “better” .
8K+ and 500+ calories is okay.
I retreat to the sofa and record the session. I then draft the blog with the concert still going on. I finish the draft just as the concert comes to an end. So by about 3:30 I am feeling renewed and up to going out tonight to have a meal with friends. All I have to do now is bathe and relax while picking out my dining clothes.
Ah the recuperative power of a long hot bath, its a delight. Bath bombed and a mug of soup to sip I relax and wonder why I do not do this more often. My partner returns from visiting her mother and we both get ready to go out with friends for a meal. Our evening is one of food and conversation as we catch up with our friends news and each others plans for the future. The pie was good as well. At the end of the evening we drop our friends off at home and then return to the World Athletic highlights and Live at Apollo. I draft the blog, take my night drugs and then get myself off to bed hoping that sleep will follow, I still have music going on in my head.
If music be the food of love, play on;
Give me excess of it, that, surfeiting,
The appetite may sicken, and so die.
That strain again! it had a dying fall:
O, it came o'er my ear like the sweet south,
That breathes upon a bank of violets,
Stealing and giving odour! Enough; no more:
'Tis not so sweet now as it was before.
O spirit of love! how quick and fresh art thou,
That, notwithstanding thy capacity
Receiveth as the sea, nought enters there,
Of what validity and pitch soe'er,
But falls into abatement and low price,
Even in a minute: so full of shapes is fancy
That it alone is high fantastical.
Tuesday and after a bad night I feel wrung out before I start the day. My partner has gone to work, so I get up and make breakfast. My injection site is sore, bloody sore and I feel like shit. I try to do bits and pieces of domestic chores but I just feel worse. I am not happy and down a couple of paracetamol. I potter about, drink soup and watch TV. The day drags into evening, athletics, football and finally drafting the blog before I go to bed having taken my night meds and more paracetamol. Usually when I have my jab in the morning the side effects kick in during the evening, having had my jab in the late afternoon seems to mean that I get the side effects the following morning and day. Thankfully I’ve booked my next injection for the early morning. Tomorrow is another chance.
Its been one of those days, I guess we all have them.
Monday and struggle to wake but eventually do. I’m craving comfort food so indulge in a fried egg sandwich and a decaf coffee. I take my vitals and down my morning meds. The vitals are good, so the arithmetic on my life my life continues to be good. It’s not how I feel, but I’m not sure how I would accurately describe my current state but it feels that my meds are weaving their side effects upon me. Tiredness and fatigue seem to be top of the list. It makes me dissatisfied with myself and probably accounts for the blandness of the blog at the moment.
I retreated to the Shed to write letters for the morning. It feels like a while since I have been there and I wonder why that is, although life has been somewhat busy of late. Having written for as long as I could I close up the Shed and return indoors. There is a pastry for lunch, my appetite of late has waned. I idle time away feeling restless until it comes time to go and get my 28 injection. Usually it gets down early in the morning but today it is at 3:50. I post my letters, move the car so Tesco can deliver and head for the GP surgery clutching my injection pack. Once there I am quickly into the nurses clinical room and hand over my packet of joy. The nurse it good and hunts around my left side mid rift to find a suitable non lumpy spot and injects me. I book the next injection and also my next bloods prior to my regular oncology review.
Home is via the chemist and shop where I stock up on paracetamol and M&Ms. As I walk down my path the Tesco delivery guy walks up it. So there is a delivery to be put away. Early evening my partner goes out for a meal with a friend. I take my vitals again, all good, and change into my training kit. Its an effort to get changed there is a big bit of me that does not want to do this but I get my ear buds in and some music on and go to the garage. I make the decision to do 45 minutes partly because I have not changed in four days and partly because I can feel myself getting increasingly irritated with myself. I set my session time and resistance level and set off. 45 minutes later I am sweaty and aching slightly. I’ve continued to row in a controlled way at about 75% effort, the result being that I do not reach my usual targets but that is something to work back to.
I manage 8+kilometers and 500+ calories.
I record my session and then change out of my kit. I am tired and my injection site is beginning to feel sore so I watch some athletics. My eldest daughter cooks fresh pasta and I continue to watch the athletics on TV. My evening drifts on till I draft the blog and take my night meds along with some paracetamol to ward off the after effects of the afternoons injection.
Sunday, I wake up to the expectation of the women’s world cup final. After a wake up decaf coffee my partner and I have toast as neither of us feel like cooked food. I do my vitals and then its time to settle down and watch the match. I will not dwell on the disappointment that accompanies England loosing to Spain 1-0.
I go into the garden and express my disappointment by brutally pruning the roses back. I clear the pond and reinstall the pond pump and solar panel having mended the wires that were severed during the grass being cut. The tomato plants are drooping so I spend time re propping and supporting them. With them now secure I feed them. All this garden work has exhausted me, it appears that I have very few spoons today. Having put aware my tools I return to the sofa and watch the world athletics. Here at least we win medals. There is tea to eat but I have little appetite. This tends to occur at the end of my 28 day injection cycle so I return to TV and take my first dose of paracetamol which I take the day before my injection as a prophylactic to ward of the side effects of it. I draft the blog, edit the Tesco order and then while away the evening till its tine to take my night meds and retire to bed. Tomorrow is my injection day so if things go as usual I’m about to have an uncomfortable couple of days so I do not plan to do anything other than be kind to myself.
Saturday and its going to be busy. There is a woman’s world cup football match to watch, money to be got from the ATM and ladders to be held so that the garden guy can cut the hedges. With this accomplished I am free to print out copies of the poems I am taking to the poetry stanza. All goes well and I find myself driving to the Stanza. At the Stanza there are seven of us today and I take the risk of presenting my darker poem about how change in communities and the messages that working class youth get. To my surprise people like it and acknowledge the difficulty of the content. It s a good afternoon of interesting poetry and it feeds my brain. We run over time and because the Quaker room we use is locked up up at five o’clock, we end reading a discussing the last poem in the garden. So British.
I drive home dump my portable office and then go to the village shop for strawberries, bread and of course chocolate. My evening is filed with athletics and football, it is after all a Saturday night. I take my meds, draft the blog and go to bed with a head full ideas and and yearnings. Tomorrow is the final of the women’s world cup. England have the chance to win or to plunge the nation into disappointment. I’m not sure I can take a disappointment at the moment so fingers crossed for a fairy tale end. The same applies to my weekly weigh in and my training session.
Thursday and both my partner and I are awake early as she has a date with an endoscope at 9:45 at our local general hospital. I eat eat breakfast and drink coffee out of sight as my partner cannot have anything before the procedure. We both prepare our “waiting at hospital” bags and I then drive us to the hospital. Surprisingly there are plentiful parking spaces and being practiced at this we have pockets full of coins to pay for our pay and display. No fancy card stuff at this hospital. Parking payment here is still in the leech ages. We find the Vanguard unit, a pristine portacabin like structure growing mushroom like on the outside of the hospital and enter. My partner is whisked away and I settle down and read my latest book, Birdy by William Wharton. So time passes. Relatively quickly my partner reappears and is looking for me. She is still mildly woozy from the atheistic, so I guide her back to the car as I would a tipsy chum. On the way we meet a bloke who asks if the pay and display is coin only, he has the desperate look of a novice who is all at sea without plastic. We take pity on him and take him to our car where I hand him our ticket that has hours to run on it. He is much relieved and goes back to car to extract what I take to be his aged mother from his car.
Rather than going home I drive us to a garden centre where my partner can at last get a drink and nibble a scone to break her pre op fast. We sit and chat while she recovers fully. We do not linger too long before getting home and settle down to resting. I have poems 361 and 362 to type up and file away. I have to make a decision about whether I am going to take a poem to this Saturdays face to face poetry stanza meeting. I’ve already shared my inoffensive ditty about my waist size here a couple of days ago this is the darker one I said I would share later.
Forged in Worker Association concerts,
random tickets for loggia, box or stall,
or museum trips,
I learnt culture.
Aspiring working class
exposing children to better things.
There were rules;
No debt,
work hard,
achieve at education,
be socialist, liberal and tolerant.
Go on marches, ban the bomb,
and avoid South African goods.
Segregation is bad,
fairness and equality are the way.
Be a good co-op member,
look after family and neighbours,
we are in this shit together.
My mother a life- long Labour member
died a racist, swamped
by all the fruits of her efforts.
A community she no longer recognised,
surrounded by tongues she did not speak,
beholden to people she had fought for.
She did not understand how being white
put her out of being right.
Told to feel the guilt of privilege,
told her life of struggle
or family and friends
was all wrong.
Of how she was ignorant,
uninformed and disposable.
Even before we got woke
she craved release,
it had all become too much,
her world had turned.
Now dying her son
feels the underachieving
white teenager rage again.
The drudgery today boys
and the still told, “your
not good enough” youth.
Everything here is not for you,
Ignorance is yours,
Fault is yours,
and the community wonders why
there is resentment when the message is,
The future is not for you,
There’s no place for you.
So suck it up worker boy
We don’t give a fuck
That’s the way it is
Init.
So it circles
Generation on generation
Without concerts or conscience,
Art or consideration.
There will be a backlash,
blacklash and barbarity
and a new era darker than before.
This sceptred isle,
This blessed plot, this earth, this realm,
This England
Hath made a shameful
Conquest of itself.
Fucked init.
As I said a darker poem, which is really about the loss of kindness, something my friends and I had talked about at a recent lunch together. I am not sure if kindness has declined or if it is the effect of age and changing social structure. It does feel as if the the working class boy I was, and perhaps still am, is still out there in the youth of today, just a bit more obviously black and white. Having typed this up I know its not anywhere near my favourite Shakespeare Sonnet, 116 but it at least I’m having a go at trying to make sense of my universe. I slip into a nap and when I rouse myself I find that my partner has also napped. Now recovered from the hospital trip neither of us fancy food so we snack. Our garden guy turns up and is chipper having moved on from his girlfriend and tells us about the holiday he has booked for next summer in the sun. He sets about cutting the grass while we slide into an evening of Outer Range, a sort of Stranger Things meets Wyoming cowboys. Its an early night for me I am suddenly crashed and spoonless, I think this is the result of my chemo drugs. Something is going on, I will just have to wait it out.
Friday, well this is finding out in style as I wake up at almost half past ten. Clearly my chemo drugs are having an effect in terms of sleep. I remember they did this before, I also think it is more marked as I come closer to my 28 injection, which is due this coming Monday. It feels as if there is an interaction going on but probably not something I could conclusively demonstrate. So I get up and mechanically make the bed, head down stairs and make myself a late breakfast. I’m in a strange mood, vaguely irritated and dark, a good indicator that I need to train today or otherwise I will not be good company this evening when my partner and I meet friends for dinner. I draft the blog to keep me busy and grounded. My morning meds taken I move on.
What I move onto is reading. My partner makes me a bacon sandwich after which my plan was to read briefly and then train. The reality was that I read solidly all afternoon until I finished Birdy. I got to a point where I simply could could not put the book down and had to know what the outcome for the to main characters was to be. It was a rollercoaster between philosophy of reality and the reality and brutality of war.
A book I could not put down.
I am long past when it is practical to train before dining with friends but I am stimulated and will have stuff to talk about. So I slide into the evening with a shower, food with friends and then hopefully a night of sleep in what ever form my medication dictates. Poetry stanza preparation must wait. Tomorrow will bring gardening, football and poetry face to face.
I woke up this morning after a disrupted night. When I am on Enzalutamide I get some of the side effects, but the worst one is hot flushes, which afflict me most at night or when I am fatigued. Last night was the first night after a five night break so I guess my body was going to respond like this. At the moment I am holding off the other major side effect of raised blood pressure by doing what training I can do. The rest are a bit more ambiguous, tiredness, risk of falls, bone thinning, restless legs ( a night affliction that when coupled with hot flushes is a real pisser), headaches, memory and concentration decrement, mood changes (inevitably low or depressed, these things never get you high), and skin changes. Add to these breast swelling, loss of sex drive and a metallic taste in the mouth then life can be a hurdle at times. I am fortunate in that it is the hot flushes, tiredness and the occasional headache that most effect me, that and the loss of concentration when I get fatigued, usually latter at night. Any way last night was one of those that combine side effects to give me a thin nights sleep. My partner brought me a decaf coffee, recommended to reduce the hot flushes and blood pressure effects.
Once I am up I am focussed on my days to do list, which is of course in my journal, another handy hint to avoid the memory side effects. I ring my GP surgery and get my 28 day jab appointment for the coming Monday. Normally I get in early but this time I am in at 3:50, which means my soreness and other responses to the injection will be pushed on a bit. With this done I head to the village chemist and collect my monthly regular drugs. I feels like a pill tsunami or pillpocalypse over the last couple of days. Onward to the village shop for a paper and malterzers before settling in at the village café. I am sitting there minding my own business eating my sausage and bacon rolls, sipping hot chocolate and doing the crosswords when an older couple come in with there young male child. This five or six year old starts saying to to his olds “look at that man”, and then “its Santa Claus, he’s got white hair”. For those that have not seen me for a while I now sport a long white pony tail down beyond the middle of my back. That’s what happens when you swear not to have your hair cut again after it falls out at your first lot of chemo. I play along I tell him I’m having a day of in the summer and that I’m letting the elves do the work today and as I leave I tell him not to tell anyone he has seem me as I will only be out and about again at Christmas time. He smiles and gives me a wave, his olds laugh.
Its sofa time as its the England women’s football team playing the Australians in the semi final of the world cup. Whoever wins goes onto play Spain in the final on Sunday. Its a reasonable game and to the mass chagrin of the Aussies they lose 3-1 to the English lionesses. A final to look forward to on Sunday, another excuse to eat maltezers. My partner goes off to see her mother and I clear the kitchen and get my training kit on. I really do not feel like it but I do and go to the garage for a row. I set myself up for another half hour session at my lower level. I am finding it difficult to resist the temptation to extend the time or put more effort in but I am determined to be controlled in this first week of training. I regard it as an exercise in discipline so I set out very deliberately to row at about 75% effort in as rhythmical way as possible, not changing pace or effort for the full half hour. I manage it and end up with a 5+ kilometre distance and 350+calorie burn. That will do nicely for today. It takes me to more than 136 PSI points on my fitness app but my fitness age does not reduce from 53, it was 42, but it will move if I am consistent.
A good 75% disciplined session.
Post session I relax, take my vitals, all good there and take a pee, all good there, no blood, and settle on the sofa to draft the blog. My partner returns home and we begin the slide into the evening. An evening where my partner has to prepare for an endoscopy tomorrow morning, so our day, or at least the morning is going to be spent at our local hospital.
Its Tuesday and been a long day, or at least my body feels like it has been. It started well enough with decaf coffee and breakfast as I settled down to watch the first semi final of the women’s world cup. It is a game where everything happens in the last ten minutes. Spain finally come out 2-1 winners over Sweden. I get my washing in and have lunch with my partner before hanging out my washing and getting another load in.
Just after two o’clock I drive into town and then walk from the central car park to the hospital pharmacy. I am very hot and I am thankful that there is not a long wait before my name gets called and my bag of drugs is proffered. I walk back to the car and return home glad to be out of the car fumes of the city. Its noxious and sickening. Once home I check my phone and find two texts purporting to come form my bank and asking me to respond to a link. Scam I think and delete them. I then try to buy an item on Amazon and have the card declined. I ring my bank and find that someone is trying to use my card. The upshot is that my card is compromised and is now withdrawn, and a new one wings its way to me. My banking sorted out I set about filling my drugs wallet with cycle three of my chemo drugs.
By the time tea time comes around I am out of spoons and very tired. I watch both a football match and a television series before taking the first dose of cycle three and drafting the blog. I go to bed early and wait for the drugs to kick in. Tomorrow I will need to train to hold the side effect off.
Monday and I am brought coffee to wake me. I get going quite early and pretty soon I am driving my partners car to the garage to have its MOT done. While the mechanics work their magic I go to the café down the road adn have one of their special breakfasts and a hot chocolate. There are enough calories in this meal to to sustain a family of four for a week. I return to the garage and drive away happy with an MOT pass.
Once home I am too full to do anything other than read, however I had not been home long when a friend back from holiday rings me. We chat for a while and catch up with our news. Its a real pleasure to hear her news and to exchange views on some issues. After the call I continue to read the book through to the end. So I can now start my new book. Before I do this I decide to train again. Like yesterday it is a half hour session and done at only 80% effort so I do not reach any of my usual targets, however it makes me sweat and feel the effort.
A slow session finding my way back.
Post training I change and return to my new book, Birdy by William Wharton. It is so different from the last book. The evening starts with tea and a bit more reading before I succumb to watching another couple of episodes of a Strike series. For me its night meds and off to bed. Tomorrow apart from being the first semi final of the women’s world cup it is the day I pick up the next cycle of my chemo drugs from the hospital pharmacy, so there is to be a trip into town in the afternoon.