Saturday. Its all Olympics and the odd chore before wandering onto the patio and scribbling odd thoughts, here is one:
409 I misheard "titanium skull" for "new soul" and thought, I'm up for that. How relieving it would be to recycle the sins of the past for an empty, virginal one. Do you new ones have a distinctive smell like a new car? Do new-borns sniff the world and take in the aroma of innocence? If I ever had one its been mislaid along the way, dropped somewhere along the grey brick pragmatic way, a sort of wizard of Oz with a Dorothy and her red, take me home shoes. Fly my pretties fly I hear myself call and wonder where my journey will end.
409 03-08-2024.
I also reflect on the good blood results that came through last night. My kidneys have never been better, and my PSA continues to fall, so the prostate cancer is still contained, which means my anxieties and shakiness is probably the side effects of my prolonged medication. For those who missed yesterdays post here they are:
Dropping PSA, excellent kidney function and lots of platelets to go round.
So given my newly found lumps I guess I am going to be juggling a new strand of stuff. No options other than getting on with it. The rest of my day has been eating and lazing until the day peters out in the taking of night meds, drafting the blog and getting myself to bed. Yes I know its not interesting, its just how things are at the moment.
Thursday, I wake and do my vitals after a tricky night, the vitals are okay but I am not sure I am. After breakfast I go to the Shed for the first time in a while and there I stay writing letters and notes for most of the day. They are not my usual letters, they seem truncated and less “plump” than usual and I seem to have lost the threads of what was in the letters that I have received lately. It is my attempt to try and make the effort to engage again with my regular correspondents. My first two or three letters are okay but as the day wears on I am reduced to writing short notes of apology for not replying sooner and promising to do so soon. Eventually by the end of the afternoon I give in and retreat to the house and laze.
Early evening and the garden guy arrives to mow the grass and tidy up a bit. There is Olympics to watch but after a while I get bored and buy the seventh series of SWAT, so that settles the evenings viewing. I take my meds and get myself to bed.
Friday and I have had a lousy night and resorted to co-codamol to get me through. I manage to get some sleep late on in the night and wake with the household up. I do my vitals (okay) and check my messages before my partner reminds me that we have to take her car to have its MOT, so I dress, take my meds and drive off to the garage, waiting to pick up my partner once she has dropped her keys off. Back home there is time to post my letters and notes from yesterday adn pick up some kindling wood.
There is little time to rest at home before I walk down to the GP surgery to have my bloods taken for Mondays Oncology review. When I get to the surgery I have little time to wait before I am called. There is a surprise awaiting, my GP has ordered extra bloods to be taken to monitor my apixaban in take and its effects. So having given twice as much blood as usual I walk home via the village shop collecting a paper and some fire lighters. Tonight could be a chimenea night. I rest for a while before ringing the garage to check on the MOT outcome, its good news, an easy pass. I take my partner to get her car and return home. We go out for lunch at our local garden centre and I feel myself begin to flag so we leave and fill the car on the way home.
The last bits of the afternoon is spent resting and watching the Olympics until I get myself together to lay a new fire in the chimenea in case I end up on the patio this evening. The athletics start so I watch the early heats before tea. I shall watch a mixture of athletics and SWAT tonight as I wait for my blood results to come in at midnight. Its the trigger for the “here we go moment” before the oncology review. Its where I find out if my arithmetic is holding up after my bladder stone removal operation. I grit my teeth and start the wait, and hope for the best and a decent nights sleep.
Stop Press: The Bloods are in:The arithmetic is as good as it gets.
Highlights: PSA down, eGFR kidney function never better, everything else normal.
Wednesday and thankfully I have had a better night. The household goes out and leaves me to my getting up rituals. My vitals are okay. I make breakfast and watch some Olympics as Brits when gold. I am determined not to get trapped by the Olympics so I get myself together and spend time scrubbing down and cleaning the patio. Its energy sapping but I push through and get it done. Needless to say when I have finished I am hot and sweaty so retreat to the recliner and spend ages cooling down.
The afternoon is full of the Olympics and odd scribblings until my partner and eldest daughter return from town. So I slide into the evening, an evening meal and then some more patio time. Its been a slow day during which I’ve ben trying to process this next chapter in my health journey. There is little I can do until the scans and assessments are done. It feels as if I have no other option but to grit my teeth and continue on as best I can. Me and Rocket still have the battle against prostate cancer to fight, I guess this is going to become a more complicated war to fight. So tonight I continue to try and keep my structures and routines in place while I continue to record and check my arithmetic and to gather my resources together. The most difficult bit is to remain engaged and as active as I can. So this is the immediate task. For now its draft the blog, take my night meds and get myself to bed and get as much rest as I can.
Tuesday and its been a rugged night, I’m tired of typing that, but that is how it is. My partner goes off to work and I go through my morning pre getting up routines and rituals. I linger in bed trying to get myself together and eventually get myself up for breakfast and more Olympics. My task for today is going to the dentist to get my next crown put in, I’m hoping that this goes well so I can rest in the garden for the afternoon.
It doesn’t. I get to the dentist after having a shower and feel so shit that I postpone the new crown for a week and go home to rest. My sarcoma referral appointment comes through. It feels like it is all pilling on. I write a couple of things but end my evening on the patio with a glass of red wine and a lit chimenea. Why not. Night meds, finish blog and then I go off to face another night.
Saturday and its my eldest daughters birthday. Its been another grim night but there is a celebration lunch to have, cards and presents to be opened. There is of course chocolate birthday cake to consume. All of this goes to plan against the background of the Olympics, at which the Brits seem to be doing quite well. Underlaying it all I my sense of not being well, so by the end of the day and my night meds I go to bed too tired to draft the blog and feeling that I need to do something different.
Sunday and its another night of disruption and a day trying to rest, this is not good. By the time night comes around I’ve made up my mind to see the doctor tomorrow. I take my night meds and pain killers and try to sleep.
Monday and I am awake early to shower, take my vitals and then ring the GP surgery for an appointment. I finally get through and get a midmorning slot. There is time for breakfast before I and my partner walk down slowly to the GP surgery. I explain my discomfort and the fact that I think I have found a lump in my lower abdomen. The doctor examines me and agrees I have a large lump in my right lower abdomen and he finds a smaller one on the other side. Because of my ongoing cancer condition he refers me for an urgent cancer MRI abdominal and pelvic scan. It should come through quiet quickly but in case it does not the doctor gives me a number to ring to chase it up. So I start out on a new exploration, in the meantime I have to manage the discomfort. It feels a bit grim.
My partner and I return home via the village shop to get a paper and some food. I rest for a bit and watch the Olympics before my partner takes me and our eldest daughter for lunch at a tea house that is on the fringes of a local park. The sun is out fully and its hot, a proper summers day. We dine and then return home where I take to the lounger and try to catch up with the blog against the background of Olympic skateboarding whose commentary is just another language. So the waiting starts. In the meantime it will be bloods on Friday and an oncology review next Monday. Dentist tomorrow to finish my new crown, at least my mouth will be in good shape.
Friday I wake up after yet another difficult night, the accumulative effect is fatigue. After I do my vitals, which are showing signs of rising blood pressure, I get up and make the effort to have a shower before a basic breakfast. I try to rest until I am due to go to the chiropodist. As part of life admin I book my partners car in for an MOT and then continue to watch the penultimate day of stages 5 and 6 of the Post Office Enquiry. So by lunch time I gather myself up and drive off to the chiropodist. Walking from the Co-op to the “Foot Clinic” I expend a lot of energy so by the time I am settled in the chiro chair I am out of breathe and nowhere as chatty as I usually am. The chiropodist gets on with the rituals of smartening my feet up and thankfully she carries the conversation.
I get home and instantly go for the relief of the recliner and change clothes. There is still some Post Office Enquiry to watch before I start to draft the blog with an eye on the clock as the Olympic opening ceremony due to start at about 5:45. As I draft the blog I get a fit of listlessness and cannot stand being inside any long so I make ka dash for the garden. Once there I fill the bird feeders and the squirrel box. With the birds fed I take to the swing seat and just relax and watch the nature around me. My partner joins me and we chat. I try to express how I am but not very well, until my partner start tea and I go to watch the Olympic opening ceremony and draft the blog.
The evening is going to be all Olympics but I am bored and tired already, the bloody thing is going on for four hours, typical French indulgence. I have nothing clever to say, I am just absorbed by how I am feeling and knowing it is not right. So I end here and wonder how my night is going to go.
Thursday, its been a disrupted night again but I have manged to avoid taking co-codamol or paracetamol, so I am hoping that I will feel better. I get up and dress but feel quite ropey so I do my vitals. My blood pressure and my heart rate are up a bit. Breakfast is taken and I am back sipping hot water, taking my morning meds against the background of the Post Office Enquiry, which sees Vince Cable doing rather well. There is some life admin to do which sees the end of the whole upgrade of the drive way and the patio. Its a big tick on the life to do list. Now its onto Phase 2, but first of all everyone in the household need a time out and a chance to get better and regain energy to move forward.
For now the retrieval of my car from the garage is the lunchtime priority after which I do not know what I will have energy for. The retrieval goes well in that I pick up my car and MOT certificate and have it back on the drive safely all as planed. With this out of the way I make a soup lunch and go out to the patio to have it while listening to Mark Steel’s in Town radio show. Its Marks humorous presentation of a town to a live audience in the town and is both instructive and funny. Today I listened to Malvern and East Grinstead whilst sitting on the patio looking out over the garden that is blooming with out any help from me.
Amazing lilies!
The mini rose survived a move from the front garden.
I finally get chilled and return inside still feeling unwell, however through the wonder of technology I manage to get my partner on my car insurance as a second driver. It is a necessary adjustment as sooner or later she will need to be able to drive it, so I suspect we will be going for a test drive soon. The evening arrives with the joys of pizza, I have little appetite but eat and then finish binge watching The Jetty. All very, wishy washy really and very unlikely. I reach time for my night meds and finish the blog for the day, all the time feeling decidedly not myself. I am so frustrated that I feel like this, sometimes shaky but mostly listless and anxious. I keep putting down to the medication and my lack of activity, but every time I contemplate doing something I get overcome by fatigue and a sense of unwellness.
Once home I have time to sit and recover and read my letter. Its is a lovely letter and as usual the write poses my questions and makes me think about how I am and what I am doing. My friend is fully engaged with family, work and community and seems to have achieved a really good life balance. With a small burst of energy I find the wood crayons I have for filing in fine cracks in flooring and other wood structures and go into the garden to fil the drying cricks in the handrail on the patio. I work the wax furniture crayons in to the handrail and finish them off with a smooth cloth. The out come is good and I return to the sanctuary of the house where I make myself lunch. I’m having trouble getting myself to eat so I go for soup and bagel as something I can face. One piece of good news is that my son has been granted his permit to stay in Sweden. This is a huge relief to everyone involved.
A friend rings me and we chat for a while until she has to pickup her daughters. With time to reflect on the letter I received today I find myself writing again and end up with a poem.
404 Its the sagging sense that drapes itself over me and weighs me down. My head won't work, nor my gut. I know all the arguments, solutions and balms but I cannot. A letter from a friend nudges me to come out of my cave and do the Real World. She is right so I write knowing that this is nowhere close. It seems I have a new battle, to do the ordinary, to step onto the stage and speak my lines, to be author and actor to an audience that is not there but imagined for my souls sake. Its not that I do not see the world, its blazing life force, the surging power of its cycles, all these things I feel and sense, its overcoming the disconnect which requires something I've mislaid. I pat my mental pockets down finding fluff and typical school boy trousers and blazer stuff. Not the things of beauty and inspiration. It is the different feeling in my spirit, the lack lustre me, the strange taste in the mouth that I meet life with, that seems to rob me of everything beyond words. Of those I have many of, actions few. This is a strange labyrinth I find myself in, and occasionally I fancy I hear the roar of a Minotaur as I grope for a thread to lead me out.
404 24-07-2024
As I try to relax I discover that the Post Office Enquiry is not in session but the Olympics has sneakily started with rugby sevens, so I am set for the afternoon I have the combination of fast and furious Olympic sevens rugby and the slow and demanding drafting of the blog to do. I pursue both until the evening comes along and I drift through it until the final of the Great British Sewing Bee. Seemed to me that the win was a no brainer. It comes time to take my night meds and finish the blog. All I hope is that I get a decent nights sleep to be able to pick up my newly MOT’d car and to make some realistic plans for doing things, anything!
Tuesday and I wake up having slept more than the last couple of nights, but when I do my “how am I” check I find I am not feeling that chipper. My jab site from yesterday is still sore and I am feeling listless again. I’ve lost my appetite, whatever is going on I have gone off food. Getting up I make a coffee and take my morning meds and then try to get myself motivated but I’m not having much luck. Out of the blue a friend calls just as I am breaking eggs to make an omelette. We chat for a while and she tells me about keeping her children occupied before the family go on their summer holidays and juggling that with work commitments. It was really good to be able to chat. Breakfast is taken on the patio, where I am joined by my eldest daughter. We have a long conversation about work and my chat with my son from yesterday. Its a pleasant morning in the sunshine until the breeze springs up and I retreat inside.
I am not hungry at lunch time so I decide to measure my vitals and to read for a while. My vitals are all good despite me feeling so crap. My eldest daughter brings me todays paper and I set about doing the three regular crosswords. Its taking me longer than usual but my friend rings back for another quick chat as she retrieves her children from a holiday activity. I continue with the crosswords until completed and then change into some clothes that I can go food shopping in. A necessary step as Tesco will not be delivering till later this evening. In a mini burst of activity I put the bin out for collection tomorrow wheeling through the new gates and having a quiet smile to myself. With that chore out of the way I start to draft todays blog. I realise that I am doing very little physically or intellectually at the moment. It is a difficult struggle to over come this of fugue that I am experiencing and wonder once again if this is the side effects of the medications that I am taking or the result of my lack of physical activity. There is a feel of Catch 22 about this whole thing. So I am going to make the effort to accompany my partner to the village shop to track down food for tonight’s tea. I do not fancy anything but know I must eat something.
Ultimately I manged to eat chicken and potatoes before settling down to finish watching series six of SWAT and taking in the Tesco order. Of course I get to the point of taking my night meds and heading for bed unsure what lay in front of me. Tomorrow I have to get my car to the garage and get it MOT’d. It feels like a real challenge but needs must.
Monday, 2 o’clock in the morning, cannot sleep, listless and uncomfortable, I resort to booking a Tesco delivery and filling the basket. It does not solve my sleeplessness so I get up and resort to pen and ink.
403
The thing about being alone in the house is that nothing moves, except the tower fan. Here I am at two forty AM not sleeping and the only company is the oscillation of air. It feels strange. I'm tired yet cannot settle, so sip hot water and resort to pen and ink. All my alarms are set to wake me from what I can not achieve. Six hours before my GP expects to jab me in my regular cycle. I've no idea what's going on.
403 22-07-2024
Mysteriously at some point I must have fallen asleep as I wake to the sound of work alarms and then again to a persistent Alexa and a phone who, in unison chivvy me awake. I feel like a grubby ragdoll but get up, making the bed as I go, and haul myself into the shower. Such an effort but that feeling of cleanliness and odourlessness is a comfort. Its time for proper seeing the nurse clothes and then a simple breakfast so I can take my morning meds. Today is all about timing, so I text the gate installers who ring back and chat about arrival times and work to do. It feels like I am on automatic as I get my trainers on and walk to the GP surgery. I am not feeling right but the nurse jabs me and we agree a time for my next set of bloods before my oncology review on August 5th. So its home via the co-op for a paper, bread and Lucozade, not as addictive as co-codamol!
Once home I tidy up a bit, empty Daisy Dishwasher, and Beelzebub bin before the gate installer men arrive. The neighbours are having work done as well so the parking and lorry situation means that for the first time I juggle my car close to the front of the house on the new block paving. Coffee is made for the gate men, the sun comes out and I take paracetamol and take to the recliner checking my messages and starting the blog. My partner and eldest daughter are making their way home so for the moment I try to rest and wait for the usual post jab side effects to kick in. Not being able to sleep is a new experience for me and I am finding it disorientating, my nights are usually interrupted but I’ve never had trouble actually getting back to sleep before. I need to think about what I need to do to get back to my usual sleep hygiene.
The gate guys beaver away and my partner returns about lunch time. By mid afternoon I am a man with new front gates, of which I am proud. We now have the privacy back that allows someone to sit in the front garden on sunny afternoons with being ogled by passers-by. Unfortunately the gates are an inch out to allow the dead bolt to slide over easily so the boys will be back on Wednesday to replace two blocks and re-drill the retaining holes. The new side way gate has been finished in the same oil as the gates and the handrail on patio is being replaced, another Wednesday job.
New gates in place from the drive side.
The final touch to the house upgrade, privacy restored.
The afternoon continues as I feel my injection site begin to get sore, so its time to rest and think about when to take my next lot of paracetamol. Pace at this time is everything. I watch an old episode of Have I got News for You and then take my second batch of paracetamol of the day as my jab get more sore. Everyone in the household is struggling so its a case of ordering in food to give us a breathing space, I order and we all begin the wait for food before a quiet evening and early nights. A collective time out is required.
