Its a Sunday so I am up first to make the warm bedtime drinks before I and my partner get up for the day. Its one of those bright skies and heavy rain fall days, and odd sort of weather combo. After our Sunday chat I get up to check that the temporary down pipe is still working and to have breakfast. To my relief all is working well and after breakfast I start to get on with some admin. The water terrace collapsed after the builder badgers put it back in the wrong order so I have ordered parts to upgrade it, once they arrive I will have another go. There are birthday things to send and mop wipes to find and buy, the life of a putterer is ever busy. With that do and my partner at the gym I start to draft the blog and indulge I a Betty’s fondant fancy.
All of this is against the background of my youngest grandson still being in hospital and on oxygen. The hope is he gets move to the ward today and improves enough to go home tomorrow. It is an anxious time for everyone, especially the parents. I sit and think of them and think about what I and m partner can to do be helpful, its not easy being at a distance, perhaps this is one of the trickier bits of being a grandparent.
My partner goes to the gym and I do very little as I feel listless. There is the French open tennis to watch but I get bored and instead turn to Shaun the Sheep and the film Farmageden. My partner returns from the gym to finds me watching the sheep film. By the time the film ends I am itchy of mind and body so I decide to cook tea and set to preparing salmon with herbs from the garden. Just as I’ve got everything on the go my partner comes in with a face to face call with my youngets daughter and to my surprise and delight there is my youngest grandson safe and sound at home. He is looking wriggly and active, like his usual self. It is a great relief to see him home and looking as good as he does, this alone make this a very good day. My partner and I chat to our youngest daughter and wave and chat to our youngest grandson. After the call we eat the tea I’ve cooked and then get on with the evening.
There is very little to watch on TV so I start to draft the blog and then seek a film or a book to read before it is time for my meds and another attempt to sleep. When all is said and done the return home of my youngest grandson is the best possible thing to have happened , just the best.
Last nights outing was excellent, so good I forgot to post the blog.
Saturday and I wake up late feeling the soreness of yesterdays jab and the expenditure of spoons from the night out, which was well worth it. I do my vitals, again all good, and then have breakfast. While I have spoons enough I try to sort out the water butt tower that has collapsed in the back garden by the new patio. It takes a while to drain the tanks and to tidy up the spillage. By the time I am done I am pretty much out of spoons. At 11 0’clock I discover my youngest grandson is in A&E with breathing difficulties, It’s going to be a long day.
In the afternoon I watch the FA cup final while keeping an eye on my messages. The whole family does, its a tricky time. By the time the match is over my youngest grandson is sleeping but the hospital is going to keep him in over night. The family take the easy way out for a meal in the evening by ordering in an Indian. The evening is a binge watch of Rebus all the time keeping an eye on the messages. Finally its time to take my night meds and go to bed and try to get some sleep. I am hoping that tomorrow can be a gentle day, there is a need to get some peace and quiet .
Its Friday and its a nine o’clock jab day so I get up and shower and grab a quick breakfast before walking down to the GP surgery clutching my hugely packaged injection. My usual nurse calls me in and we are soon agreeing which side I am due to have the injection in, right this time. Before I leave I book the next jab and for good measure I book myself in for my COVID spring booster during the coming week. On my way home I pick up the drugs owed to me by the pharmacy and some more paracetamol. I pick up a paper from the shop and return home feeling quite breathless.
With a fresh glass of water I set to on the crosswords of the day and to my pleasure do not need to resort to Google at all. On checking my emails I am taken by surprise by one from the Americans who have sent me a draft of one of the collections. I now have two collections to edit, so as my partner goes off to shop I star to flog through the tedious bit of the production. I find major mistakes in formatting, they have used first lines as tittles and not structured the contents page properly. On top of that they have used American spelling all over the scripts. Its slow work and being dyslexic does not help as I have to Google some things to check them. Eventually I get to the end of the task and email the Americans back with a length email about what I have done and my understanding of where we have got to in the process with the two collections. They want to sell me the idea and the reality of an audio version of the first Cancer Years collection, but I am putting them off and suggesting an audio version of a selection of all four collections when they are all out on all the platforms. Its a waiting game now. After all this I find an interim invoice from the builder badgers so spend a bit of time sorting that out, by which time my partner has returned and I am hungry.
A late lunch and start to feel my injection site getting sore, its the usual process and as yet I’ve not taken any pain killers so I settle down to start to draft the blog. Tonight I going with my partner to see Seven Drunken Night, a show about the Dubliners. Lots of diddly diddly music and traditional songs, many of which I will have heard in my folk club days. For now its about getting comfortable and conserving energy.
Thursday and I wake up decidedly groggy and wonder if this is due to the additional drugs that the GP has prescribed as a guard against future UTIs. I have no way of knowing so I check my messages and then my vitals. These are all okay. The builder badgers have arrived and putting copping stones on the tops of the new patio walls, very smart. I make breakfast ad as I do I remember last nights episode of “Race Across The World. The young brother and sister couple are filmed talking to each other and the sister tells him what it is like to be be born without a uterus and only one kidney, of how the loss of hope for children of her own affects her and how it has in the past. They have never talked about this before. The edit cuts to the brother talking to camera about how that conversation has affected him and suddenly he is in tears and all he can say is “Can somebody hold me” Thankfully a camera crew member does. The memory of it makes me feel unexpectedly tearful at first I think this about my dead sister but then I realise its about missing my old work in therapeutic communities. I write a poem.
395 They race across the world a brother and sister. She talks to camera after telling her brother what it is like to be born without a uterus, without hope of children, and with one kidney. He talks to camera and cannot bear the pain and can only tearfully say: “will someone hold me”? A film crew member does. This comes back to me as I make breakfast, out of the blue, I am tearful. At first I think this is about my dead sister and then I realise, I miss my work. All those men, criminals living in community who desperately wanted to be different, good, kind, loved. Those oceans of tearful realisation in the struggle to be a better person. The grief of killing a best friend, wife or stranger. That inception of horror and the desperation to never create a victim again. Some succeeded, some could not bear the pain, others saw the process and ran. Time and time again I saw those tears and the plea to be held; held by community, held by group; just held.
395 23-05-2024
I eat breakfast and then take to the sofa to transcribe poems to digital and then start the blog for the day. I feel terrible still and just want to sleep. It feels as if I just need to become mindless for a while and sleep it off like a drunk but tomorrow is jab Bank Holiday Friday and we are supposed to be going out in the evening. I need to pull myself round and its noon already.
The afternoon is filled with finishing “the sun and her flowers”, a book of poetry that is beyond anything I could do. I can see why it sold. It has a unique voice and speaks to many contemporary issues. I am so taken with it that I have sent it to a friend. Having finished the poetry I caste around for diversion still feeling ropey and then I find the Post Office inquiry, and I am in luck its Paula Vennells giving evidence. I spend a long time watching is a sort of stupor. How did such an incompetent get installed as the CEO of the Post Office. I lost cunt of the number of times she could not recall or remember or did not know. Another display of denial and ingenious obfuscation. There was no a moment when I felt a twinge of sympathy for her, she clearly was so thick she was out of her depth or she knew very well what was going on and chose to let it go on. It is a modern spectacle of throwing the Christians to the lions, it was never a fair contest really as the Kings Council minutely devours her tiny morsel by tiny morsel. So I watch and wait to see if there is a phone in vote to see if I can give a thumbs up or down. I know it does not work like that but what fun it would be, instead I will have to rely on social media and Private Eye to ensure the final lasting blows to any future Paula Vennells thinks she might have. I say good bye to the builder badgers for the weekend, they have done a lot of work today including installing a new manhole cover on our discovered one on the back path. The whole project is getting along well now, there is just something like 2000 paving blocks to lay now, gate pillars to finish building, electrics to finish and drain ways to install. There is still about two weeks worth of work to go.
The evening begins with a classic Star Trek and then drifts on into an evening of drivel really but it serves it purpose of getting me to Friday and my monthly jab in one piece. Suddenly there is a flurry of activity from the Americans and a new cover design for The Cancer Years: Some Rough Stuff arrives and is shortly followed by the manuscript for that collection. I have a quick look at the draft manuscript and my heart sinks as who ever put it together clearly has not understood the manuscript. I sigh and know it will take me all day tomorrow to get it straight. It appears I am going to have a busy day, jab, editing, concert.
Wednesday and its pissing down so I hope for a lay in. I read a bit more of “the sun and her flowers” adn then do my vitals. All good there. The builder badgers will not come to day due to the rain but the master badger drops by to say they have collected their digger and not to worry no one has stolen it. He also tells us that the coping stones for the patio are going to be delivered. In fact they arrive mid afternoon. I get up and have breakfast and start a sort of mooch around getting ready to go to the hospital to collect my next three cycles of “chemo”. My partner offers to drive me to the hospital, so mid morning we set off. Our local hospital is notorious for its poor parking and access. The upshot is that my partner drops me at A&E and I walk thorough the campus to the pharmacy. There is a long queue and one bloke is arguing over drugs he wants but the pharmacy as no prescription for him and a woman who is clearly being tended to on a “not well now” basis. I get to the front of the queue and hand over my details. As always there is a long search and much rummaging around. Eventually they find them but of course they can’t just give them to me I have to wait to be “dispensed” to. As I wait to be called to the most un-confidential dispensing area I have ever see, apart from in prison, I can’t help thinking that Argos wold do this so much better. I get my drug and message my partner who is now in the queue for the car park. I walk the several hundred yards of cars that are queuing to get into the hospital car park and find my partner. We soon get into the “flow” lane and head home.
My partner and I have just about got in the door when one of my eldest daughters friends rings to tell us that she is at the GPs and that they have called an ambulance due to a suspected embolism. There is immediate alarm and we dash to the surgery to find her in a wheel chair with doctor in attendance. There is conversation and then the ambulance arrives. The two paramedics take her to the ambulance to run tests while we wait in the surgery. The up shot is that she is taken to the local hospital we have visited this morning to get my drugs. I am not well enough to go with her and she decides to go un accompanied. My partner and I return home preparing to wait for text from her. we eat and wait, watch coping stones being delivered and exchange messages with our eldest daughter as to what is going on. so we wait, my partner goes to the local pharmacy to pick up my regular drugs and some new ones the GP has prescribed me on the fly so to speak to help me get through my current Uluru attack and future ones. I take to drafting the blog to divert myself. We are all anxious and just trying to get through this latest crisis. Trying to keep calm and be rational about what each of us can realistically do. I want to be there but I cannot and my eldest daughter has chosen to be there on her own at the moment. So I wait, send messages and wait. This is is a horrid day. Its my jab day on Friday due to the Bank Holiday Monday so I order treats, trying to think about all of us trying to recover and rest over the long weekend. Its been a grim week for all of us, we need respite and quiet.
Its only mid afternoon Wednesday!
By 10:30 at night my eldest daughter is on her way home. A friend of hers is picking her up and bringing her home. So the priority is to feed her and then for everyone to get some rest. This is the time to re-balance and find ways forward. Fortunately its a Bank Holiday so there is a bit of time to take breath. For me its time to take my meds and get as much sleep as possible before Friday when I will get my 28day jab. Ultimately today was horrid but has got better.
Tuesday and I wake to the sound of my partner going to work to be quickly followed by the arrival of the builder badgers who have started work on the front drive and building the new entrance pillars. I take my vitals and take some time to write and to read. I read the first section of rupi kaur’s “the sun and her flowers”. She is a poet made reference to in the book Yellowface that I have just finished reading. I was intrigued so ordered it and thought it might be a an interesting way to find new brain food. The collection traces the aftermath of a broken love relationship. This collection contains sketches by the author as well, it was apparently a Sunday Times best seller and was published in 2017. I am intrigued by the style and the format.
An interesting find via Yellowface.
Whether it was reading poetry or reflecting on the family at the moment I find myself jotting one of my own.
393 I wake up expecting poppies the platoon has scattered each wounded in their own way and all seeking safety. The battlefield is strewn with dangers, survival is tenuous. Bound together by blood it’s the fear of loss that pushes one foot forward. Some wander seeking aid, a nurturing, saving hand that will guide us back to the regiment of family. Field dressings have been applied with promises of care to come. No need yet for a stretcher or the surgeon’s skill, yet here we are hurt and disconnected our individual pains driving wedges between us as we crave care and attention but feel unable to reciprocate. So tired so exhausted by the pain that no one can take away. We are isolated fearing stepping on a mine as we look out over the killing fields of life, right now. 393 21-05-24
Finally I get up, breakfast and give the badgers coffee before taking to the sofa office. It is here I attempt to settle and to do so I start todays blog but to be honest I feel ropey. Soon its time to oil the badgers again with more coffee. I clear the kitchen and settle on the sofa where I start the days blog and tidying up my paper work. My meds are taken and note that I am back on the blood thinners after my three days off them to aid my recovery from the Uluru (Bladder stone) attack. Lunch time comes around quickly and then I start to try and record a video letter to a friend. Initially I have trouble with the sound level and some interference, but eventually after trying various solutions I change which laptop I use and the start. It takes me three goes to get the letter recorded through a mixture of inept techno management and dissatisfaction with the content. Finally I get a one that feels about right. Once the letter is on a USB stick I get it in to an envelope and take it to the post office. The short walk is a real challenge for me, I return home spoonless, it disturbs me.
Just as I settle down to do the days crosswords I get a phone call from a friend who I’ve not had a chance to chat to recently. It is a brief conversation as she has to collect her daughter after some shopping. It is good to hear another voice adn to hear someone talk about how they are and what it is going on in their lives. After the call I get on with todays cross words until the builder badges wave good bye. The front drive is beginning to take shape.
The front drive is coming along
The evening arrives and I am still feeling under the weather, mostly my gut aches, but it’s having to have to deal with a lot at the moment in terms of the drugs in my system. I eat tea and return to the blog to a TV background and the wait for Tesco to deliver. Again I shall work towards taking my meds and having an early night. I will of course watch the great British Sewing Bee.
Monday and I wake earl to find my partner has already got up and moved her car to accommodate the builder badgers, but she is not feeling. I get up and have breakfast, check my vitals and then clear the kitchen. My partner goes back to bed to try to sleep. The badgers arrive and I make them coffee before they start to finish off the slab laying on the patio and the back apron of the house. Its looking good and I am feeling good with the decisions we made to do this work. I am still in rest mode and think, tentatively that I am recovering from my latest Uluru attack, although I am still felling quite sensitive but I am not in pain. So while my partner rests I continue to read Yellowface. A brief lunch and more Yellowface until at 3:30pm I finish the book. It is a cautionary tale and satire on the publishing industry, given to me by a friend to warn me of the dangers of success should my slim volumes of poetry ever sell. We both know that won’t happen so the book was a kind thought and a tease. It though worth a ready and has it quite funny in parts. Its a soft read and easy read, something that you could take on holiday.
Having finished my book reading, I replaced batteries in the blood pressure monitor and started to draft the blog while my partner kept track of how her mother was doing in hospital. She has recovered well and is due out late in the evening and will be greeted by her original carer from Greece. Hopefully that will go smoothly.
The builder badgers leave for the day with the patio nearing completion and the back drain re-configured it is looking good and with luck will be complete apart from the electrics on Wednesday. Tomorrow they start work on the front drive. So the early evening arrives. I had toyed with the idea of going to to the local family history group, which meets in the village library tonight, but I am not up to it. I do not feel well enough yet to be meeting strangers and talking family histories and genealogy, so I shall pass on that and save it for another Monday night. So far there is nothing from the Americans only an acknowledgement of receiving my edited draft of Herod’s Children Crumulent Collection (HCCC), so all I can do is wait for them to send me a cover design and a final draft to edit, after which we can press on with The Cancer Years: Some Rough Stuff. Going forward I think it is likely that I will just write for the Cancer Years series, it feels as if I have mined my other poems as much as I can unless I decide my juvenilia is interesting enough, but I know it isn’t, its more like Vogon poetry, hideously juvenile and toe curlingly embarrassing.
Tonight is to be a rest night, all I need to do is amend the Tesco order for tomorrows delivery, take my meds and get an early night if I can. Recovery is slow so I need to be patient and remain focused on doing the right things.
Sunday and there is no lay in, I get up early so I can have breakfast and take my antibiotics and my other meds. I find out very quickly that my bladder stone (Uluru) is still at work giving me pain but at least the hematuria is abating. My day is slow, I try some time on the garden swing seat in the sunshine while my partner goes to the gym. I tidy the kitchen before retuning to the sofa to rest. I am really trying not to take co-codamol but the pain gets to me and I give in, they are pain killers after all. So I meander, I write, read and watch sport, all interrupted on a regular basis by my discomfort. My partner cooks tea and we eat but against the background of my partners mother being taken to hospital, so the evening will be an anxious one. It seems that this is one of those difficult times, so I need to breathe and be as proactive as I can. I share my poem of the day and that will be the blog for today. My usual routines will now kick in and will culminate in my night meds and bed, providing my partner and I do not have to get up in the night. It feels as if this is a time to dig deep and do whatever is necessary.
391 Half man half medication, not even half man since my chemical castration, still trying to contain the noise, the emotional flack from family faltering. Encouraging the living to live and to go into the world. All I crave is peace and quiet, to be in the moment as my blood pressure monitor hums and pumps to reveal if my arithmetic is good. There is me and there is Co-codamol me alongside all the other drug me’s. A nasty mix of mental states and constipation, listlessness and anxieties, that I do not recognise but others have to live with. Save yourselves, take to the life boats and row for shore far off where mermaids sing and pixies dance. Where ripples of me can come from the moment of joy when the stone dropped into the mirror pool and there was the wonder and excitement of a me that sang and danced full of curiosity. Bright colours and not a drug in sight. This transition is up hill as slowly I am no longer Sisyphus but the rock. Let it roll, no one need any longer labour, go and play while you can and let the boulder come to rest. The peak was always precarious and the view, to be honest, was not that great. It is erosion that will take me, shelter yourselves from the elements and take warmth by others fires, for this is nature on chemo and pain relief.
Saturday, I am up earl to shower, eat and take my antibiotics. I check my messages and then I print out the last remaining poem for the afternoon Stanza meeting. I spend all morning editing the draft of my next poetry collection, interrupted by my bladder stone (Uluru) from time to time. Gradually my hematuria appears to ease. My afternoon is spent at the poetry stanza, a zoom event today. Again this is interrupted by Uluru. This current bout of discomfort is debilitating and I find myself running out of energy quickly. There was lots for me to think about in the Stanza meeting, I had not thought about how my poetry might effect others but today I was confronted with the fact that some of my stuff has influenced at least one person to write a particular poem with some difficult content. The evening was just an evening to get through, all I could manage was this brief blog and taking my night meds. I’d give anything for a night of straight eight hours sleep. When I get this fatigued from my body attacking me I get vulnerable and distressed, which I deal with by withdrawing into myself, the Chinese box.
Friday and last night I slept in the spare bed as I fought off a Bladder Stone attack. Uluru has come out to play. For those new to this page, Uluru is the name I have given my bladder stone. Bizarrely I thought I was alright in the morning, at least well enough to re-park the cars off the drive in anticipation of the builder badgers arriving. However I soon found I was passing blood again as the pain was back and it was very noticeable. I take co-codamol and ring the doctor. No I am not well enough to come to the surgery, yes I can get a urine sample to you, yes I will take a telephone call this afternoon, and so it is done. After a while I take a urine sample and it is very red with blood. My partner immediately takes it to the surgery and in a few minutes I get a call to say the doctor will ring me in the next few minutes. In the meantime I go to the toilet again and this time its even bloodier. I start to draft the blog while I wait, I think this might be a long day one way or another. At least the builder badgers have started to lay the patio slabs.
Never rains but it pours, my son messages me to say Swedish immigration has rejected his residency application. That’s what Brexit has done for my family! All this while I wait for the GP to ring me.
Just take more co-codamol I guess
By lunch time and early afternoon I am still waiting to hear from the doctor. Uluru continues to make itself know as there is no diminution of the hematuria but a little less pain, so there is something to be thankful for. The last time I went through one of these Uluru attacks it took ten hour before the blood stopped appearing and by the look of things it’s going to be at least that long this time around. So I continue to rest, drink hot water and keep myself amused by checking and sending emails and drafting the blog. The builder badgers are cracking on and slowly the new patio is being paved. Every so often I get the urge to nap but I am afraid I will miss the doctor’s call and/or worryingly just slip into a deep sleep or coma.
The GP rings. Its all a bit predictable, as I thought I am prescribed antibiotics as I am a high risk person. We agree that stopping the blood thinner for three days is good and that if my hematuria continues into Monday or Tuesday I need to go back to the doctor. If I get fevourish I need to get seen. The antibiotics are prescribed and sent to the village pharmacy to be collected in two hours. My partner goes down a bit early and picks them up for me. While she is doing that I fill my drugs wallets for the next two weeks, omitting the blood thinners for the next three days. On my partners return she cooks me filled past as I cannot take the antibiotics on an empty stomach. I eat quickly and get my first does down me. All during this my bladder takes me to the toilet regularly and continues to show hematuria and provide some discomfort.
As early evening arrives I return to the blog and draft some more. My evening is predestined to be one of constant water drinking and some TV before taking my night meds and trying to get a nights sleep. I feel exhausted, it is really debilitating to experience the hematuria and the pain every time I go to the toilet, so I keep reminding myself that this to will pass. Tomorrow is a poetry stanza meeting over zoom, I’m hoping to be mended enough to attend.
