Sunday and a day of rest, I think not, not when there are potatoes to lift, a green house to empty, a paddling pool to empty, a house of bins to empty and the weekly recycling to be sorted, a computer account to be created and the ombudsman decision to be thought about and challenged and then the cars to be prepared for tomorrows jaunt to the garage.
Oh yes the most important thing, it was Sunday weigh in time. Success, a weight drop, today is a no train day and the joy of a treat. Mine has been a Mars Ice Cream.
Tomorrow is back to the battle and the real world of MOTs, Enabling Environments and Ombudsman work, and of course training and deinstitutionalisation. Go me.
Friday has gone, vague memories of training, rugby, agreeing with our garden guy to get rid of our back garden fence and cooking beef in red wine. Also a growing awareness that it is nearly the anniversary of the start of the blog and therefore the start of chemo. To many anniversaries for comfort.
Today (Saturday), was a day that got started late, a good oversleep, that turned bacon bagels into lunch. In the continuing effort to deinstitutionalise the family headed for Beacon Hill in search of sculptures.
We obviously arrived at the wrong car park, no sculptures , so we walked and looked at the views. It has a rock outcrop that appears to be a mans profile. I am sure the locals have a name for him but I cannot remember what it is.
The showers were an interesting experience but they desisted enough for us to enjoy a large ice cream.
The size of the ice cream was an accident as we did not appreciate just how large, large is. I donated my flake in order to keep to my no chocolate and sweets rule. Home and the depressing spectacle of Leicester Tigers playing like school boys and getting beaten soundly. Home made pizzas lead to a evening of Heroes. The anniversaries keep creeping closer and tomorrow I shall need to go over them all to write a response to the ombudsman. Its strange how the past keeps returning. However the biggest issue right now is what happens when I step on the scales tomorrow morning for my weekly weigh in. There is a limit to how long I can tolerate my phone telling me I am obese.
Today has been long and a bit of a curates egg. It started with my kidney blood test results popping up on Patient View. It was overall good news. My potassium spike has dropped back into the normal range, hurray. Although my eGFR (roughly the percentage efficiency of the kidneys) is outside the normal range of 60+ it has gone up to 54, which is not bad for a guy that had kidney failure 18 months ago, and 60+ is for average healthy folk. Go me. My sodium level is good. Yippee. My Urea and Creatinine levels are still outside the normal range but not far off and getting closer in the right direction. More go me, reasons to be cheerful, 1, 2, 3.
So a good start to the day and not even a first coffee done yet. Next on the list was taking my partners car to the garage for its MOT, I waited in the café down the road eating bacon and sausage sandwiches washed down with coffee. During this time I had a WhatsApp conversation that introduced me to Spotify as a way of listening to the Umbrella Academy sound track. So one download later I have Spotify on my phone and a strange range of music suggested to me. I’ve yet to play with it but I am looking forward to the experience. Back to the garage an hour later and Bingo, the MOT has been passed, £45 of joy, go me yet again.
So back home and time to open the shed up before preparing for the Open Forum I host on behalf of the Enabling Environment team at the RCP. So an hour flies by in cyber space as the ravages of COVID get explored and dealt with. Once the hour is over their is a short debrief with a colleague and I retreat to the shed to start writing up my session notes. I am half way through this task and the woman from the financial ombudsman rings to tell me what her view is. I go into the house and put her on speaker phone and for an hour we listen to her talk her way through her understanding and her view. There is no way to describe what it was like going over one of the most distressing time of ones life not mention that of the rest of the family. The conclusion was that, in simple terms if you call something a good will gesture you can withdraw it when it becomes too expensive, which sounds to me like good will with ill intent. So she mentions a figure and we stay silent, eventually saying there is a lot to take in and we want to examine the documents when they arrive and have time to think about our response. Being told how much someone appreciates the distress we have suffered and then putting a price on it is disconcerting when the figure is so low.
A walk to the shop to buy chocolate, zero alcohol beer and other comfort food. Home to clear the kitchen and to eat the traditional Thursday tuna pasta. The evening passes quietly and I write the blog feeling a bit numb. So as I said at the start, today has been a curates egg, good in parts.
EVER FORWARD, YESTERDAY GONE, TODAY THE REALITY TO BE EXPERIENCED, TOMORROW WHAT I MAKE IT.
It rained on me when I went to the GP for a blood test. It rained on me on the way back and when I went to bring the bins in, It rained on me when I went to the shed to work and when I returned to the house to join an open forum. It rained on me on the way back to the shed to train and when I had finished and returned home. Its raining still and looks like its with us for days. I am not impressed. However a friend has rung me and invited me to meet for coffee at the Yorkshire Sculpture Park next week, which I shall do. It fits my deinstitutionalisation plan so I will look forward to the opportunity to have different conversation and a change of scenery.
Tuesday and its a day of adventure. MOT to do, café to visit and an ombudsman calls me. I even get to wax and polish the pine table in the dining room. However the priority has been to drink as much water as I can in order not to be dehydrated when I go for my blood test tomorrow. So its been a strange doing and drinking day, mostly a form of distraction. It would have been fine if the car had passed the MOT, but it didn’t and in doing so signed its death warrant. On Monday it will get the work it needs to get through the MOT and then it will go to those nice “we buy any car” people, and if I time it right then I am off he hook for tax and insurance.
I have undertaken to deinstitutionalise myself from lock down and shielding. So this pupating butterfly plans to emerge and get out and about more, I cannot go on being confined to the home with the odd trip to the GP surgery. Time to resurrect Rocket, the real world and life.
Monday: Its injection day, and letter writing day. As the day goes on I get more sore and tired. The decorator visits, scribbles notes and goes. I go for a walk with the family and then sofa sit and watch Striker. Tomorrow its the first MOT day, so I am out and about. This is not one of the fun days.
Saturday has been and gone, exceptional for only one reason and that was the pleasure of having my youngest daughter to come and stay for the weekend. Always a joy to have her around, a refreshingly direct voice in the family conversation. So there was much chat and catching up with work and family life. In the afternoon I went to the shed to clamber onto he bike and grind out an hour of exercise, which included the usual ten minutes in my altitude training mask. The mask restricts air intake, makes the lungs work harder to draw in breath and mimics the effects of training at altitude. It in theory it produces a higher blood count. I am hoping that ten minutes in a cycle session will boost my blood counts and increase my fitness and performance in the battle against cancer. The evening was a family one of watching TV together, Striker mostly. Sunday is my weigh in day and after another week of careful diet I am hoping for a weight loss, any weight loss, of any magnitude will do as long as it is downwards.
Sunday. Woke late having gone to bed at 1am last night having cleared the kitchen for a new day. An overcast and wet day. I went to the bathroom to go through my ritual Sunday weigh in. Body prepared, scales on same floor tile and I am ready, feeling confident after my week of denial:
97.2 Kilos,a bloody rise of 0.2 kilos. I am stunned, saddened and angry, all that effort for fucking nothing! Clearly not exercising enough, too sluggish a life style and still too many calories.
Breakfast, eggs, bacon, toast, more toast with jam and lashings of black coffee. Might as well indulge, I’ve got another week of restraint in front of me with some extra exercise and the excitement of going out into the community for two visits to the GP surgery and two trips to the garage to get two of the cars MOT’d. I’m getting stir crazy, a combination of being at home and lack of shed time to write and pursue projects. Its a useful wake up call to get out and about and to shake off my self imposed institutionalisation. The fly in the ointment is the rising tide of COVID positive cases in Leicester and the surrounding areas, way above he national average and far in excess of the rates that require isolation after return from the countries in the quarantine group. I doubt that the area will come out of restrictions anytime soon.
I clean the fish tank out while watching Ronnie O’Sullivan thrash an opponent in the third session of the world snooker championship. I remember Ronnie turning up at Gartree prison with the trophy one year to show his dad who was a guest at her majesty’s establishment at the time. Brightened up a boring normal visits day. By the time I had finished cleaning out the guppy colony Ronnie had ended the afternoon session only needing one more frame to win the tittle again. The poor bastard he was thrashing faced an evening of waiting to lose, which is a crap position to be in for anyone, but then again he had played rubbish so its his own fault. I suspect the second prize of £200,000 will soften the blow.
Happy Guppies in their clean tank
Having eaten a late Sunday dinner and waved farewell to my youngest daughter, I retreated to the sofa to blog and await the final football match of the season to involve and English team in a European competition. In the meantime I read and ponder how I am going to shift my weight. Next week is relatively busy so a little more like normal life returns and with it a higher calorie burn. I am hoping next Sundays weigh in produces a more favourable result. Tomorrow is a day to start to try again.
I knew today was not going to be fun given that it was dentist day. Being a prompt sort I rocked up on time and was told to wait as they were running behind time. So I amused myself in the car park, without car, for half and hour before I was called in, offered hand sanitizer and shown to the clinic room. I was greeted by my dentist in a self contained breathing helmet and full hazmat kit. Well this is fun. The injection in my gums weren’t fun, nor was the metal cage around my tooth, nor was the drilling. The actual filling was more artistic and ended with the usual trying to spit out mouth wash accurately with the now very numb face. So by the time I got home the morning was gone and just needed to read for a couple of hours till my mouth recovered enough for me to eat. Soft noodles and zero alcohol beer. More reading and the it was time to jump on the bike and train for an hour. The best thing about the bike was the end when I found the hibiscus had flowered.
My evening was an IT conquest as I got my laptop to blue tooth with the TV so I could watch the first rugby match of the renewed season. Another little wonder of the cyber world and a new skill to add to my CV. The best news of the day was that my youngest daughter is coming to stay for the weekend. This was counter balanced by the news that an old client is going to be released, old colleagues were equally dismayed. Strange world. In this strange world it will be a year in 17 days since I wrote my first blog and a year since I started chemo. I am not sure how I will celebrate, there are a lot of things and people I miss as we grind through the aggravation and this COVID.
Today is Thursday, I like to keep track of these things. Patio coffee and Woman, Girl, Other. The more I read the more I see parallels in the literature of the working class. Same undervalued, unrecognised, isolated, alienated and denied, particularly nasty as its inflicted by ones own. End up thinking that no matter what you achieve there is a pernicious sense that you should not be there.
Breakfast of bacon sandwich and coffee, followed by more reading and a phone call to the GP to organise next weeks blood test. By lunchtime I was ready for my Open Forum and hurray people turned up. It was a good hour and productive, I felt quite lifted. I chatted with a colleague after the forum and then retreated to the shed to write up the forum notes. A quick trip to collect drugs from the chemist and tuna from the co-op, except they had none! The village has clearly gone into a tuna frenzy, or they are stock piling already. Dinner and another evening pinned to the sofa by the Umbrella Academy until I find myself abandoning the blog as I realise the Tesco order has to be amended before the deadline. Dentist tomorrow for a filing, so I am not hopeful of a fun day.
The day started with Isadora and fruit tea on the patio after rehanging out my washing from yesterday. I noticed some new flowers and an interesting bug which I caught on camera whilst I was hanging out the washing.
I was later joined for breakfast by the family and I continued to read Isadora. During the morning I booked my Monday stabbing appointment and booked a GP call for the afternoon. I continued to read and before I knew it, it was time to log into an Open Forum for TC workers. A pleasant hour hearing how people were continuing to deal with the lockdown and the new ways of working on the web.
I light lunch with a friend who was visiting my partner before waiting for my GP call. Just after three my GP rang and we had a sensible discussion about a blood test to which she agreed it was a good move and wrote up the form. All I have to do is book an appointment for next week. Pleased that I had sorted that out I changed in to my kit and went off to the shed to clamber up on the bike for forty five minutes. I tough session but worth it I think. Dinner followed after we had waved our guest off.
I started reading Girls, Woman, Other by Bernadine Evaristo which won the Booker Prize in 2019. I am immediately drawn in and think it likely I shall block read this book. I enjoy new voices when I find them. Like most of the new voices I find they come recommended by friends whose judgement and opinions I trust and value. While in a conference session a while again I was struck by someone who noted that only by participating in as widely diverse group as possible could she hope to be the best person she could be, I think the same about literature, the wider the diversity of writers the more enriched will be my personal universe. That’s the theory, I am curious about how I will test it.
A new voice to enjoy
My evening was also full of The Umbrella Academy, which could become a major watch. The final act of the day to write the blog.
