AS GOOD AS IT GETS PHASE DAYS 110, 111, 112, 113 & 114

DVT DAYS 125, 126, 127, 128 & 129

A.G.A.I.G DAYS 125 -129

So where have I been since Saturday the the 11th of July I hear you ask, or rather I hope you ask. Recently I think I have been experinceing post birthday inertia,weight gain and a sense of meaninglessness due to the continued COVID lock down. I have also been busy with Enabling Environment work trying to write all the content required before the editor of the work moves on to pastures new and will inevitabley forget about it having followed Gibbs Rule 11, When the job is done, walk away. There have been some fiesty TEAM meetings that have left me wondering what I am doing and how much COVID confinement is getting to me, I realise how much I miss the gym, not just for the equipment but also the change of scenery and coffee made by someone else. I can after all clamber up onto my own exercse bike in the shed and sweat an hour away so it is the other elements that make the gym appealing. Being confined cuts into any sense of efficacy over the outside environment. Its all very well growing things in the garden but it does not compensate for a sense of contribution to the world. I miss not having face to face contact with the people who I care about outside of the family who are confined with me. I spent the whole day yesteday writing letters and cards trying to maintain some sort of communication with people and to keep the “juices” flowing in terms of social interaction and connectedness. As yet I have not slipped into solpisism, I know the real world existst beyond me, its not being or feeeling that I am part of it that is the irritation.

This isolation is not good for my health. Physically I feel my fitness drain away and mentally is anybodies guess. I have begun to be ultra sensitive to any change in my body functions and when it does not match what I think is normal for me I get anxious that the change or defiecit is due to advancing cancer. I have no way of knowing. It is not made easier when my latest blood results come back without the crucial PSA result they are suppossed to have in them. I suppose this means calls to the cancer nurse and the unit to chase it up, however strictly speaking I should only have a blood test just prior to my next oncologist appointment in August,I doubt they will be that fussed. On the other hand as yet I still have no new oncolgy appointment. Another call to make.

Life just seems to be full of irritations at the moment, that I know is my stuff, but nevertheless they are still irritating. The lack of an oncology appointment is one of course, followed by my phone contract coming to an end, slugs eating my dhalias, my “My BT” phone app refusing to download onto my phone because it thinks it already has! The list is long and equally petty. I do fight back with radical action like sewing on the missing button from my shorts and rethreading the waist cord on another pair, I even dissected a heating pad and returned it to working order. Where necassary I employed revolutionary methods to fix things, like getting the plumber to fit a new overflow tank ballcock and valve, my that was an exciting day. Even now I wait in anticipation of tomorrows visit by “Jeff” in his mask and gloves to survey the possibility of re-piping our central heating system from micro bore to full bore piping. My whole being can hardly handle the excitement, although this will abate when he quotes us a price to do the work.

The garden continues to provide distraction in a beautiful way. We visited our local garden centre the other day and returned with trays of bedding plants and spent a productive afternoon upgrading some of the flower beds. In the midst if this I found a seed time nest of great beauty.

The seeds of time

In fairness I think we are doing our bit to give nature a hand but the weather appears not to want to join in. This dull grey leaden sky nonsense that drizzles on regular occassions is not what I call summer sunshine and puts a real damper on things both literally and psycholgically. I felt so cold the other day I was tempted to put the heating on but resisted the temptation and went for more layers. I applaud myself for this as both green and courageous given that at any moment I may suffer a “hot sweat” which sees me disrobing at a rate of knots. Just one of the delights of my cancer treatment, which seems to happen more often in the night thus breaking my nights up into two or three hour chunks. I used to go to bed and die till the morning, but now it is short bursts of non sweaty to sweaty sleep. Perhaps it is this sleep disruption that is finaly getting to me through the accumulated fatigue.

In all this there are moments of true jolliness, like when my lastest addition to my ice hockey shirt collection arrived. My most recent addition is a russian red army team ice hockey shirt, it came to me all the way from the Ukraine. I am very pleased with it.

My rarest ice hockey shirt todate

I am truly excited at the moment as at this very moment I am resting my feet on my new under desk foot rest whilst the laptop sits neatly on my lap as it should. This probaly sounds purile but believe me the joy of being comfortable as I work is well founded. To add to my daily sense of jolliness is that in a couple hours our new garden help is due to arrive and mow the lawns and do some rudimentary tidying up of the garden. Not only do I get the more onerous jobs done but I get to see another human being in the confines of our house and garden. I am tempted to get a garden camera, one of those motion activated ones to see what and who else wanders into our garden. If I get the right equipment I might even be able to plug it into my TV and create my own “Spring Watch”, Chris Packham and Michaela Strachan eat your hearts out.

I have just come from an “open forum” run on ZOOM, my favourite platform. One of the participants noted that as a collective we appear to have run out of creativity as COVID has progressed. Initially everyone was challenged by the problems and necessity truly became the mother of invention. There was an out pouring of creative ideas to over come the restrictions as we all struggled with coming to terms with our changed life styles. Now it seems we are habituated to the situations rather like new remand prisoners getting used to prison life in the first few days of captivity, we have slipped into our COVID routines and no longer face immediate problems. Now the challenges are more subtle, it is our attutides, tolerances and resilience that are being tested. It is the more psychological aspects of “quarentine” that are increasingly coming to bare down on us that are the real issues to deal with and these require more than a quick fix, new routine or flash of creativity. These require thought, when our abillity to think reasonabley or rationally may be impaired and as a consequence our judgement less good. Perhaps this too contributes to my recent lassitude and lack of blogging behavior, perhaps I too am beggining to experience creativity fatigue as I sink into a sensne of being “comfortabley numb” to the COVID threat and/or the world. All of this will disappear tomorrow when my youngest daughter visits us tomorrow and stays a few days. There comes a time when family comes first.

AS GOOD AS IT GETS PHASE DAYS 108 & 109

DVT DAYS 123 & 124

A.G.A.I.G. DAYS 108 &109

Two intense days of writing and meetings. As a new contract starts there has been a lot of reviewing going on and a lot of writing to create new resources to be used during and after COVID. Only now on Friday afternoon have I had time to clamber back on the bike and pedal an hour away.

That all sounds dull but there have been moments of light relief and pleasure during which I was able to frame my birthday Rob Ryan and hang it in the shed, order my next blood test and B12 injection and schedule my next drugs order. Such fun!

There have also been moments of indulgence, for example the latest addition to my ice hockey short collection arrived from the Ukraine, its an official 2016 world championships shirt which was held in Russia. My other extravagance was a pair of Rupert Bear trousers. I came from an idle conversation that got silly and me wondering if it was possible to get Rupert Bear trousers. What I found was pretty close and spectacular, although I am not sure they go together!

They are a lot brighter in real life!

Also someone sent me a book, probably my sister but I am waiting to confirm this. A cheery tome, that is waiting for me to pay attention to it.

Almost sounds too good to be true.

I am hoping for sunshine and clear skies over the next few days so that I can test out my mobile observatory app on the phone and read about what I see in the astronomy books I got for my birthday. I have lots of letters to catch up on as well. I feel a bit cheated by the Shielding being extended, its not so much that I cannot go out but I cannot invite people to come and eat and get back into cooking for people. I miss the conversations over food, either at home or out in a restaurant, even a snack bar. I am planning a holiday once the coming weeks meetings are over with and there is some breathing space. I crave a routine of writing letters, painting, training, reading and tending the garden, I can hear you all now muttering “then bloody retire”, but I doubt I will yet, maybe sometime.

AS GOOD AS IT GETS PHASE DAY 107

A.G.A.I.G. DAY 107

Today is a bit of a blur as it was a long writing session. With a deadline to meet on Friday I’ve spent the day trying to read stuff and write something clear and readable. That part is quite enjoyable but the bit I hate is doing the references. Of course during the day there were moments of light relief like an open forum to attend and the excitement of an Amazon parcel to open. As the day wore on and I got tired, the writing became more onerous. At the end of the day our new gardener turned up for his first two hours. I did the grand tour of the garden and then let him get on with it. Seemed strange to see some one new in the garden and not Brian our old gardener who died in January this year.

I find some time to frame one of my birthday presents so that it can join me in the shed. Its about time, which I find myself thinking about more often these days.

So here I am at the end of the day still thinking I need a holiday. Once I get through this current bout of work I intend to have some quality shed time. I increasingly realise I have a limited amount of energy to expend and need to manage it more mindfully in order to ensure I get the important things done. Its one of the reasons why the blog is shorter than it was as it is getting done as my days energy runs down.

A galaxy of my own

AS GOOD AS IT GETS PHASE DAY 106

DVT DAY 121

A.G.A.I.G. DAY 106

A slow day with intermittent aggravation, mostly work and one of those days when I wonder if I need it, but always conclude in the calmer moments that I do. The highlight was my partners brother bringing me a birthday present and the exciting bit was he came in for a cup of socially distanced tea. Its the first time someone has been in the house for months. He described going for a COVID test and the process he had to go through, by his account its quite an interesting process with a lot of non verbals and some obvious ommissions in the instructions. At the crucial part of putting the swab into the tube to retain the sample it was a challenge given that the swab stick is four times longer than the retaining sample tube. What is ommited in the instructions is to snap off the swab stick to fit in the tube. Apparently it took two goes before he got the hang of it.

This is the sort of fun and adventue I am missing out on while I shield. On the up side I do at least have time to read the books that I recieved for my birthday. Pleasingly many of them have spectacular picures or are very entertaining. I am rapidly concluding that I need a holiday from work, I have lots of art to create, poems to finish, books to read, home improvement projects to organise, letters to write and friends to cherish. I might retire for a fortnight.

AS GOOD AS IT GETS PHASE DAY 105

DVT DAY 120

A.G.A.I.G. DAY 105

Its my birthday!

72 today and only another 37 to go till 109. Its good to have a goal, however today is celebration time with cards, gifts, food of my choosing and too much chocolate. Its a time to think of the last 1000 steps and the next 1000 steps. A Chollima (also Qianlima, Senrima, or Cheollima, literally “thousand-li horse”) is a mythical winged horse that originates from the Chinese classics and is commonly portrayed in East Asian mythology. This winged horse is said to be too swift and elegant to be mounted (by any mortal man). Today it is a compliment and refers to an extremely talented person. Now there is an aspiration. Time to get on with my unfinished projects, tomorrow, today is time for celebration.

1000 Li Horse

AS GOOD AS IT GETS PHASE DAYS 102, 103 & 104

DVT DAYS 117,118 &119

A.G.A.I.G. DAYS 102,103 & 104

I have been busy alright. Garden and work mostly. I continue to fight by staying as fit as I can, no alcohol, reduced sweet stuff and daily time on the exercise bike. Result; I am the lightest I have been all year.

Tomorrow is my birthday it is also the following: 483 days since I was admitted to hospital in Jamaica with kidney failure, 383 days since I was given my diagnosis of metastatic prostate cancer, 383 days since my first hormone suppressant injection. 329 days since I first saw my oncologist, 291 since my first chemo therapy, 181 days since I finished chemotherapy, 119 days since I was diagnosed with a DVT.

Happy Birthday for the 6th Roland.

EVERY DAY IS WAR

AS GOOD AS IT GETS PHASE DAYS 100 & 101

DVT DAYS 115 & 116

A.G.A.I.G DAYS 100 & 101

All work and no play makes Roland a quick blog person. At the moment I am fully engaged in the Community of Communities Annual Forum being held on line. When I am not doing that I am busily writing content for a training resource which has as a short deadline. So life is very full especially when I try hard to keeep up my daily exercise bike time. All that means is I have little time to think and reflect on what I want to write in the blog. I am loathe to stop writing for each day as the blog as it is still very much part of my strategy to resist the cancer. The discipline and the routine is good for me and it keeps things in perspective as the days pass. It is a sort of check in for me and for family and friends that I am seperated from.

With lack of thinking time goes fatigue. I am tired by the time it comes to write the blog these days, but with a birthday coming up I am planning a break and a rest so that I can have some quality thinking and blog time.

AS GOOD AS IT GETS PHASE DAY 99

DVT DAY 114

A.G.A.I.G. DAY 99

Today its been all work. Straight into a conference session, lunch and then back again to the conference. Both the presentations were excellent and the reflective spaces following them were both interesting and stimulating. I had the pleasant task of chairing the two reflection sessions. As soon as the conference was over I packaged and posted my sisters birthday present and returned home to head for the shed and the exercise bike. An hour on the bike and I was back in front of my laptop writing content for the Enablng Environment LeadershipResource. Only late in the evening when I had sent the EE work off to the editor had I goto time to write this brief blog. It feels like I am in work mode for the week and want to be clear of work for next week when my birthday rolls round. Each birthday that I make is now a present in itself and I intend to celerate each one as lavishly as I can, although COVID and the new Leicester lockdown is a downer this year. I am just hoping there will be enough in the future to do more expansive things.

AS GOOD AS IT GETS PHASE DAY 98

DVT DAY 113

A.G.A.I.G. DAY 98

So this is it, its conference week on the net. After getting up I have a quick breakfast and log on to the conference. A screen full of familar faces of people that I had the pleasure of working with over the years and some new faces who work in the therapeutic communities. The first part of the day was an open session and an introducttion to the conference programme and a recap of the year to date. A brief break and we are back for an interview with one of the originators of the Community of Commnities. All very interesting until the end when he puts up photographs of people who were at the first C of C annual forum 18 years ago. One of them was of me and a colleague at that time, no beard, thats me not the colleague. Bit of a shock seeing myself as I was 18 years ago. Another break during which my new Underwood T shirt arrives. I had it made after seeing the testamony of his sister to the senate comittee following the death of George Floyd.

My new T shirt

Below is one of the newscasts that show the testomony that caughth my mind.

https://cbsloc.al/3hkh6FU

Back in the conference space we sit together again and go over issues of old. By 3 o’clock we come to an end and I quickly change and get myself to the shed where the bike awaits me. An hour later I am sweaty and tired with a to do list of domestic chores to do.

My post bike look

Chores done I sit and check my emails and begin the blog till dinner is ready. Dinner done I continue the blog and will post it before I have an evening of warm baths and thinking about tomorrows conference as I am chairing two of the session. Seemed like a good idea when I offered, now I am not sure, hey ho!

J.J. Whitley Elderflower Gin 70cl | very.co.uk
A quiet gin

AS GOOD AS IT GETS PHASE DAYS 96 & 97

DVT DAYS 111 & 112

A.G.A.I.G DAYS 96 & 97

Two days of little to note really, a lazy weekend in which the rain, football and the occasional outburst of WhatApp kept me going. It was nice to earn a rest day from the bike on Sunday by weighing in with a weight loss at the early Sunday morning weigh in. Maybe the bike will pay off.

I am reluctant to go out and about just yet and I am not sure if it is a habit response in that I maybe becoming institutionalised in my own home or more risk adverse as the news media keep talking about a “COVID spike” in Leicester.

Coronavirus testers swoop on Leicester as spike in cases could lead to first local lockdown in days

  • 28 Jun 2020, 18:31
  • Updated: 28 Jun 2020, 18:32

As my shed becomes my office, studio and gym I spend more time in it and have less need to venture into the world except to post my letters. My lockdown tactic of make the world come to me has worked beyond my expectations but in parallel my skills and abilities to use various communications modes has expanded. Most of my worldly needs like food, drink, clothes, equipment and indulgencies all arrive in my porch and just create a fortnightly job of wrangling the cardboard recycling mountain out to the collection point. My outflow consists of letters, emails, WhatsApp, texts ,videos, a YouTube channel, Zoom, Teams, phone calls, Amazon and the internet. When listed like that it looks a formidable modern list. There is little left other than build a pigeon loft.

See the source image

So with intelligent application of the mediums available being in the outside world becomes redundant. All of course the most important thing, that of human contact. The biggest danger is turning into one of Harlow’s monkeys brought up by a chicken wire mother and craving Terry towelling comfort of touch.

See the source image
Harlow Monkey preferring touch comfort to food.

It becomes a self fulfilling process as new ways of being at home present themselves. Next week much of my time will be spent at a conference on the internet. When I am not at the conference I shall be doing other work over the net. The challenge will be to get out to the shed.