Tuesday, I wake up in the spare bed again, the night sweats are grim. They wake me in the night and I swap bedrooms in an attempt to get cool and get back to sleep. I wake up tired and I am beginning to think that there is an element of drug side effect in this tiredness. My vitals get done and they are all normal. I get up and do a muesli break fast. I miss coffee and lemon squash is getting boring and not satisfying at all. With the “stay alives” done I settle down to go through packets of old photographs and put them into new pocket files so the backs can be read easily. I spend all morning doing this filing and sorting until my partner presents me with a roll and grapes.
Post lunch I move my car and put the bins out for tomorrow and then its back to filing photos. I finally run out of files. Its mid afternoon so time for another set of vitals, again they are normal. I’m feeling very fatigued but in a real effort I get into my training kit and go to the garage. I set the rower up for an hour and start off very slowly feeling crap. The first half hour is really tough but just as I am getting into my stride my partner nudges me with a phone telling me its the solicitor. I am not pleased. I stop rowing and talk to the solicitor and in the end tell her exactly what price to put on the London house and quiz her about other aspects of the estate. She goes and by the time I get back to the rower I have lost my session data. I reset the rower for half an hour and start again. I get to the end sweaty and aching. In total I have done 65 minutes and I calculate I have burnt 800+ calories and rowed at least 12.8 kilometres. I towel down and return to the house take paracetamol and change my clothes. Tea is served, eaten and then I retreat to the sofa to draft the blog. My evening will be short hopefully, TV, night meds and bed. If I can raise the energy I will go to the gym tomorrow and do more document filing and preservation. This new drug is taking its toll subtly through feelings of tiredness and listlessness, at least I hope it is the drugs.
Monday and I wake up about 9 o’clock after an interrupted night, feeling listless. It the anniversary of my cancer diagnosis. Four years ago I was delivered the message and I started my journey to chemotherapy and beyond till here I still am in Chemo II. I get up have breakfast and feel spoonless but there is meds admin to be done. I make an appointment to have my bloods done before going on holiday so that the results are available for my oncology phone appointment on the 6th of July while on holiday. Something to look forward to on my birthday on holiday. I continue to contact the oncologist’s secretary to see if I can get a repeat early prescription for my new meds. She promises to talk to him and ring me back. She does and the answer is I am going to have to go without my new meds for a week. I suspected that might be the answer as the oncologist will need to see my blood results and know my blood pressure results from my monitoring before signing off my prescription. At between £2500 and £3000 a pop for 28 days I am not surprised there is a lot of caution and paperwork.
I go to the Shed to write letters. Its a while since I have been in the Shed and I notice somethings appear to have been moved. I remember that the door was left open one hot night so I suspect the squirrel and possibly a cat, or both, have been in for a look around. I write until a friend rings me and we have a long chat about how we are and what is going on for us. Recovering from long COVID is indeed a long haul as there are so many different skill sets that need to be brought back to a working level. Organisations seem to forget that recovering people also have families to provide for and to nurture, they do not just go to work and then sleep. So my friend is persisting in building up her skills across the board at a rate tat is sustainable, which of course is never fast enough for an organisation as they want everything now. My friend goes off to eat and hopes I enjoy my birthday and rearmament presents she has sent me. My partner gives my a lunch roll and I continue to write letters. By two thirty I am flagging so pack up the Shed and return to the house and reload the garden camera with batteries and return it to the garden. I go to the post box and return to do my afternoon vitals. I do them , all normal and fall asleep. This is definitely a low spoon day. I am woken by the Tesco deliver at five o’clock. Luckily I had moved my car off the drive earlier. I had intended to train but I just could not raise the energy to do so. Its a real double blind on these days when I have no energy. Training is supposed to be the best thing to reduce the side effects of the drugs, but the major side effect is feelings of tiredness. You can see the catch 22 in this. I decide that I shall train tomorrow and go for a good nights sleep tonight if I can get it.
I sofa my self with my laptop and start to draft the blog before tea. I shall dine and then watch England play North Macedonia in the European Qualifiers. (7-0). I get side tracked some how an order a solar power pack/charger. I have vague thoughts of making sure that on holiday I can be sure to power my phone and laptop cheaply, no point in having sunshine if it doesn’t do chores for me. I am also looking for ways to reduce our electricity usage. I note we have a lot of things on standby so I might try an experiment in July and turn off everything on standby to see if it actually makes any difference. But for now its a slow journey towards my night meds and oblivion.
Sunday and yet again I wake early and cannot settle. Eventually I get through my routine of messages and emails followed by taking my vitals. We have breakfast and have a long face to face call with our youngest daughter. She is now at the stage of needing to rest as much as possible until she has her child in July.
Its time to go to the gym. I drive my partner there and we get up to the gym floor. I grab a cross trainer and set myself up for an hours session. I plug Rammstein into my ears and set off sipping water as I go. By the end of the session I am 600+ calories less.
Sunday session, a Fathers Day session
I change, shower and head for the lounge and a hot chocolate. My partner joins me and we drive home to indulge in fat rascals on the patio. I take photos of some of the flowers that are flourishing in my garden. I am ever in awe of how nature just keeps going and producing spontaneous beauty.
The afternoon vitals need to be done so I get myself comfortable in the spare room and promptly nap. When I come round my vitals are fine and its time to eat tea. Football and chocolate follow into a evening of increasing fatigue and failing concentration. I enter my late evening sense of effort and waning cognitive capacity. It would seem that my spoon economy is feeling the effects of all the competing demands at the moment. I take my meds and vaguely make a to do list for tomorrow which I hope my pixies will hold onto till the morning. PS, delayed publishing due to server being down. That’s American servers for you.
Saturday, at last I last a full night in the same bed. I wake and go through my usual messages routine and then make my partner a drink.. There is time for a shower , checking my vitals and then breakfast. I decide which poem I am taking to the Stanza in the afternoon and run of the hard copies. My partner and eldest daughter both go out and I soon follow.
At the Stanza my poem goes down okay and there are some interesting poems to hear and discuss. I am glad I made the effort, it feels like I fed myself. I drive home to an evening meal followed by a lot of British Sewing Bee and Glow Up make up competition. I take my night meds and draft the blog and go to bed, feeling slightly apprehensive.
Friday, I wake early from another nights crap sleep or lack of it. I do a set of vitals, check my messages and mail and then go for breakfast. There is more death admin to do which takes a while. I type up a poem and think about which one, if any, I am going to take to the Poetry Stanza tomorrow. There are three I am considering, they are as follows:
1.
I quit!
Says it all.
I resign
From everything.
No more
Of anything.
No effort
for no act.
I’m done,
dusted down
to a skeleton,
and then the fucker
interrupts with pain killers.
What’s in it for me?
Peaceful death
is apparently not
an option.
So,
Grind
Grind
On
and
On.
3.
Settle down you’ve seen a pensioner in a suit before.
Maybe not vertical,
more wood encased on a rainy afternoon
with a lot of people looking into a hole
and wishing it was all over.
Except that no matter how hard you try,
you cannot help thinking,
“Did he leave me anything ? Am I in the will?”
I’m just getting my monies worth out of mine
before an unsuspecting stranger grabs it
as a bargain from Sod the Aged.
I hate old people,
Why cannot they all die tragically young?
Why do they hang on till everyone is guilt ridden,
thinking it would be a relief when they go?
Yes yes a couple of you love nanna
but what a pain she is.
How many times has she buried
her teeth in the garden?
It’s a tricky decision and a decision I am likely to make at the last moment in the morning. I was going to go to the gym but my partner is taking the afternoon off so I head to the garage to do half an hour on the rower. As its only a half hour I put the resistance level up a notch. It is hard work but I get my distance and calorie goals.
6+ kilometres and 400+ calories
Session over I change and record the session and then my partner and I drive to a nearby coffee shop and have lunch and an ice cream. It affords us time to chat, take stock and plan. The sun is out and it is pleasant to have time to reflect. We drive back where my partner relaxes and I get on with the final version of the family tree. The label I had been waiting for have arrived so I transfer the data on to them and put them onto the chart. With all the names in place with what dates I have I begin to draw the lines between the generations. Its tricky stuff and as an amateur I am sure I will have made some technical mistakes. Eventually I get it done, at last a family tree that I can get other family members to fill in their details. It would appear that my maternal grandmother, who was in service, got pregnant and was then taken in by her aunt and husband, which explains why as a child I knew her by two different surnames. Just as I finish the tree its time for pizza on the patio.
I go from pizza to sofa to watch England beat Malta and then catch up with Have I Got News For You. My family go to bed leaving me to draft the blog for the day. I do this with a Few Dollars More playing in the background and my new air collar cooling me.
Thursday and I wake again in the spare bed after a disrupted night again. I’m beginning to wonder when I am going to sleep well again. I get up after doing a set of vitals for breakfast. I send the agreed letter to the solicitor dealing with my sister’s estate. That done I set about cleaning out the laundry area. When I have mopped through I then paint the drain surround I was working on yesterday.
No tripping over it now!
Somehow the morning is gone, I eat soup and watch a short programme on Messi and the world cup. I then spend a long time sorting out the family tree from my sisters information. I find that the data has been drawn up wrong, so I have to re do the chart to get the people on the right generation level. After a couple of hours I think I finally have it. The next step is to try and confirm the dates of birth so there is a lot of documents and photos to look at. I take my second set of vitals for the day and then go to the garage to row for an hour. It goes okay and I burn 800+ calories.
Yes that will do, what other 75 year olds do this?
I’m tired, I think my new drugs are taking their toll. I record my session eat tea and then water the garden before whiling the evening away with a film and Grimm. I’ve just read this blog and wonder if these drugs are doing other things to me. Lets face it, its boring, I’m pottering around and not feeding my brain. I think I am tired of myself so I shall take my meds and go to bed and see if sleep comes along. Perhaps the struggle is more insidious than I expected.
Wednesday and I wake again after a poor nights sleep. So I go through my new routine of doing my SATs and checking my mail and messages and then its time for breakfast. I settle down to write a draft letter to the solicitors dealing with my sisters estate. I send it to my co executors. Its sunny while I bring in my washing and get it away. Once my partner had gone to see her mother I head for the nearest garden centre with my eldest daughter who is in holiday. We gather up bags of compost and some fresh herb plants. I also get some plants to try in the flower bed which is proving difficult to plant. Once home I set to and and get the new additions into the ground. It takes a long time in the heat adn by the end of it I need to take a quiet time out and rest. I do this by taking a set of SATs and taking in the reflections.
My partner returns with her brother and we talk about the making of a family tree. I show him the work I had done on my own. He leaves and I go to the garage to train. I do not feel like it but this is now my only medicine that I can control and contribute. The garage is hot as I strap in for a 45 minute session. It goes okay, I make 9+ kilometres and burn 600+ calories, so I guess it is reasonable.
Being an oaf I kept the wrong photo but the kilometres are there.
I get out of my sweaty togs and record the session before having tea. My partner presents me with a surprise present. Something I have never seen before, a scarf fan! Apparently one of my partners staff recommended it as a wizard way of cooling down. I was sceptical but it is in fact brilliant. It has three speeds and does in fact cool effectively. Its really handy to combat my hot flushes. So here I am with my new useful toy.
It look odd but works a treat.
So my evening is spent wearing my new comfort and pawing over the family tree. It turns out that the work my sister had down in drawing up a family tree is not totally accurate. Some generations are on the wrong level and the dates of birth do not tally. So I spend a great deal of time trying to get things in order. I think I finally get there on the data that I have but it is clear I am going to need to do more research on all the papers that have been retrieved from my sisters house. So at the moment I have a lot of small sticky labels on a a chart as I try to work out the best layout on what I know to date.
It seems this is going to be trickier than I thought.
I flog away all evening and in the end get to a point where I can do no more. Over the coming days and weeks I will need to do a lot of research to get a final and accurate version of the history. I pack things away and return to the lounge to find the family on their way to bed so I am left alone to draft the blog for today. I take my meds and then make my way to bed. Its been a strange day in several way but as I beaver away at mending, making good, tending and nurturing garden and training I fear I have neglected friends who I owe letters to, so I hope for time in the Shed to write and to “chat” with them.
Tuesday and I wake up early after a really bad nights sleep. Once again I retreated to the spare bed just to try and get comfortable. Once awake I go through my routine of checking messages and emails. Then I check my vitals and record them. I dress and go for breakfast and morning meds before borrowing my partners car and going off to the nearest Wickes to get some outdoor wall filler and some appropriate trowels. I take the opportunity to top up my partners car on the way back.
From then on its all drains. It is clear that the drain from the kitchen to the main drain is not draining and is therefore in need of unblocking. This needs to be done before I can do the work I need to do to ensure the water butt overflow is set in at the right height. I set to work trying to unblock the drain at the kitchen end but because of the configuration it is not possible despite my creativity. Only one thing to do and that is to lift the manhole cover on the main drain and rod it. So I unleash my rodding set and get to work. It becomes apparent very quickly that I am doing battle with my very own fatberg. It is disgusting, smelly and repulsive, but I rod away until I get the the blockage dislodged. It takes all morning to rod the damn drain clean till it flows clear and evenly. I have the hose down the kitchen drain end while I rid through, a kind of flush and floss technique. At last enough is enough and I pack up the kit and stop for a well earned rest and lunch. A lunch during which the squirrels sneak p behind me to steal peanuts from the feeder.
Sneaky squirrel.
Once lunch is over I can get on and cement in the water butt overflow at the right height. The stuff I have bought is good stuff but in this heat I have to work fast and a pretty finish is not going to be possible, maybe I will paint it a bright colour when its set properly. I finish as much as I can and then clean my tools and put all the tools I have used away. Its now gone three o’clock and I am knackered.
Ta Da, one overflow cemented in properly.
Its time for a siesta. I strip off my work clothes which go straight into the washer and I lay nude on the spare bed taking another set of vitals (all good), and then doing the crosswords. The garden guy arrives and is set to chop our laurel back of the grass. After some time I get myself up and start to transcribe my sisters attempt at a family tree onto the one the one I have bought for the purpose. I beaver away until it is all transferred. Now I need to order some pens and family tree labels so call a halt. Phase two will be to add all the birth and death dates along with marriage dates if known. Its time for tea, which is taken on the patio followed by hot chocolate, a treat. I notice that the garden is continuing to bring forth flowers, including some that do not always bloom.
Mini roses in profusionThis is rare, must be hot.
The mock orange smells glorious.
In a burst of energy I put the bins out and get the light weight duvet out of storage. My partner and I change the bed and then finally we retreat to the sofa, me to write the blog and my partner to watch Hotel Portofino. I’m almost totally spoonless and of all the things I need to do it is to shower. So I shall shower and hope that I get a sound nights sleep.
Monday and I wake up thinking “gutters” on account of yesterdays thunderstorms that saw my gutters overflow. However before getting up from the spare room bed, it was unbearable hot last night, I take a set of early morning vitals. They are normal, which is good. I have no idea how long it’s going to take the Enzalutamide to get into my system, so each morning is a bit of a gamble at the moment. I get dressed and make myself breakfast, take my meds and then I am out in the garden preparing to clean my gutters and the water barrel with its overflow.
I have hedgehogs in my gutters to keep leaves out of them but I think when there are plants growing on them they are probably not doing their job. So I clamber about on step ladders held steady for me by my eldest daughter taking the hedgehogs out of the gutters. Then its all about clearing out the accumulated sludge. I have two down pipes, one to a main drain and one into the water butt. The one into the main drain was blocked on both sides of the down pipe. When I investigated what was the major constituents of the blocking material I found it to be full shell on peanuts! The squirrels over autumn and winter had obviously buried the whole peanuts in the gutter hedgehogs for safety. As it was they had formed very effective little damns and blocked any flow, hence the over flowing gutters. I spend along time clearing out the guttering and then I turn my attention to the water butt. After cleaning the inlet and the top trays I realise that the outflow pipe is not sufficiently downwards into the main drain. So I had to remove one of the bricks forming the square round the drain so that I could lower the outlet pipe. After a lot of faffing and swearing I manged to dislodge the brick and then relay the outlet pipe. Using a hose I filled the water butt and found the overflow now worked effectively. By the time I had got everything sorted and the tools away it was almost two o’clock.
I had lunch, did the crosswords in the paper and then spent time ringing my GP to book my next 28 day jab and order my next batch of drugs. I find a letter from my oncologist telling me that he is going to ring me on the 6th of July at noon. I thought it was really thoughtful of him to ring me on my birthday, and while I am on holiday too. What is more problematic is getting my next cycle of Enzalutamide, so there is going to have to be some horse trading to ensure I go away with enough to see me through. All this has tired me out so I go and do another set of vitals and move the car off the drive to facilitate the Tesco delivery. I return to the spare bed and have a nap, which the Tesco delivery brings to a rude end. With the weeks goodies stowed I wearily get into my training gear and head for the garage and the abominable rower. I set up for 45 minutes and get myself going in an unheard of 23 degrees. I am surprised but the session goes relatively well. I get over my target of nine kilometres and six hundred calories.
Hottest of the year so far.A good distance and 600+ calories.
I retreat to the lounge and watch a spectacular thunderstorm take place. A good test for my gutters, which cope well, no overflow, but it is the main drain that is a problem. There is clearly a blockage so I shall be out last thing tonight pouring industrial strength drain clearer down it in the hope that it will do the job. I record my session and start to draft the blog before having tea. I am now tired and I know there are still things I need to do but I think my evening is going to be a slow sofa jog towards my night meds and bed. At the back of my mind there is a tingle that suggests that I maybe ready to start reading again.
Sunday I wake up apprehensively after a reasonable nights sleep. I am wondering how I am and the answer seems to be “so far so good”. I get up take my SATs and make drinks, returning to bed to chat to my partner for a while. Having chatted we get up and eat bacon bagels on the patio as the sun shines. I spend a long time putting some of the family history documents into plastic pouches to protect them. In doing so I unearth some more information about my grandparents generation. I dig out the family tree my sister started to produce and tried to identify some gaps and questions about some of the couplings. I know there is a lot to do but to start with an updated family tree is needed so I order some proper family tree sheets.
These activities take up a lot of time so my partner and I go to the village shop for a paper and ice creams. On the way back we buy tomato plants from a table outside a neighbours front garden. It is Open Gardens in the village this weekend but the place is very quiet and there does not appear to be many people around. Once home I get in to my garden gear and set about planting the tomato plants into big pots. With that done I start to weed out one of the back garden beds while my partner does another. After a period of intense gardening the whole family indulge in a Solero lolly sitting in the garden and being aware that the squirrels are around us as are quite a lot of young birds. I water the garden. Thirty minutes later there is a thunder storm. I take time out to take a second set of SATs. They seem to be okay.
The family dines and then we ring my youngest daughter. We end up having an executors meeting and discussing the intricacies of paying death duties. It ends with me agreeing to draft a letter to the solicitor. I fill the soap dispensers and then return to the sofa to continue the blog for the day.
In terms of my new chemo therapy it appears that I am doing okay although I have moments of feeling tired. I am not sure if it is any worse than usual or if I am looking for signs a result of hyper vigilance. So first chemo day done, I settle down to watch some TV and will down my new meds and go to bed and see what comes along tomorrow. Somehow death admin seems to have crept into the day again, so tomorrow I need to do something outside the home, gym probably.
