Today I have spent my day on the telephone and in front of a screen on ZOOM. I have a “to do” list now and some work to look forward to. But I am tired and it is difficult to be creative and inspired when fatigued. My partner has a sore throat but does not know if it due to spending all day on the phone or it is something more sinister. However given the current virus situation I shall sleep in the spare room tonight and see how she is in the coming days. My drugs for the next month have arrived. Even though I have a considerable time to go on my 1800 unit self injections I now have the following months worth of the 1500 unit injections. The future defines itself in my medication, my blood sample forms, those tell tale blood results and of course my next oncologist appointment. I try to find a routine but fail. I have keystones like my meds, going to the shed to write letters and the garden to tend, but I hate the dependency for food and the loss of my role as provider. I am fortunate, I know but I wonder how well I will fare as the days, weeks and months progress. I guess that a lot of people feel the same way. I have thoughts about being made a leper, being “shielded” for my own good and feelings of being infantized, but I found an app today that updates the incidence of the virus and the death toll in each country. I find it sobers my feelings and chills my judgement.
So today I wake earlier than usual and find my partner has
gone out for her morning walk. It is time to clear away a space for the plumber
to service he now dodgy boiler. So, I clear the cupboard out and put in the bucket,
sheet and inspection light. That’s my part done; with luck I will not even see
him as I will be in the garden shed. My partner returns and finds me on the phone
to the GP surgery. I am due to have my 28-day injection on Monday at the GP
surgery but I am not supposed to go out. The receptionist is a bit nonplussed
and goes off to talk to the doctor .The outcome is that I am to be driven to the
GP surgery and parked in the car park and then my partner will go inside to book me in and then when the
nurse is ready I will be ushered in and seen to. Well that’s one issue sorted
out.
Next I am trying to get through to Sainsburys again to get a delivery slot. No chance but at least there is some advice for those of us who are “Shielded” but not recognised yet by Sainsburys. I am referred to a UK gov site where I can register. I eagerly do as I am told and register quietly proud that I now know my nhs number of by heart. I get registered and fit all the criteria so now I have to wait. Apparently, the information will not be shared till next week and Sainsburys will contact me. So, I need to have patience and wait for the wheels of cyberspace to turn. I will not starve, so there is no need to panic especially as I am trying to lose weight.
Before retreating to the shed I order flowers for my daughter in law in Sweden. I contacted my son to let him know and found that he and the family were self-isolating for a fortnight due to one of them appearing to have some sort of cold. What I did not realise is that Sweden is not in lock down even though the countries around them are. My son tells me that the cafes, restaurants and general areas are all open and being thronged. Part of me is glad that the family have isolated themselves.
With some tasks done its time for me to retreat to the garden shed and to set up my home from home. I have decided to write at least one letter a day, hopefully more. I have dug out my address book and will write to everyone I have an address for and of course I shall write more to my regular correspondents. I have reams of writing paper that I have recently acquired so I am looking forward to the process. My fear is that I descend into narcistic and boring self-reflection, but I trust my friends and those that care for me to tell me. It is a pleasant experience and I had a moment of feeling like a Bronte in a garden writing those now famous letters. I have several volumes of letters either as collections or specific collections from one or two authors. The letters of Van Goth to his brother are a fascinating read. I might well re-read these as I recently visited the Van Goth interactive exhibition, which reminded me of what a fascinating character he was.
Van Goth’s bedroom
My letter for the morning is going well when I become aware that the plumber is in the house, so I leave my partner to deal with him. He had text’d me to say he was arriving in twenty minutes and that he would be keeping to the social distance protocols. A good man. When he finished, he gave me a wave and shouted “See you on the other side”, which is what the Jamaican nurses used to say to me as they waved me off in the ambulance after dialysis. Ironic as this time last year the medics were trying to decide when to give me my pre flight dialysis. We now have a working boiler all without any human contact so we can sit tight and bathe now.
A bite for lunch and then it was on with the work clothes
so that I can mow the grass. It is a lovely sunny day and the smell of the new
mown grass is a delight. It makes me tired but the effort is well worth it. I
think it is going to change tomorrow and we will be back to the slightly chill
weather. By the end of the afternoon I am sweating like a pig and have to sit
down and rest for a while. Of course, I check my mail and find that I have some
Enabling Environment queries to answer so as I sit to recover, I draft a reply.
My daughter goes of to do her one period of exercise for the day and takes my
letter of the day to post. I crack on and pack away the things that I moved this
morning. What was nice was being able to pack my new computer tool box, so that
I now have all my computer tools and bits and pieces in a single tool box. Have
computer box will travel, well not quite yet.
My evening will be writing the blog and listening to my partner having her virtual singing lesson. Her resourceful singing teacher is quite a character and very creative hence the skype singing lesson. Tomorrow I have early calls to make and then two ZOOM meetings to do, so Friday is going to be busy.
A friend sent me this yesterday, I thought people might like to see it:
WHAT WAS HERE WAS A FALSE NEWS ITEM THAT I HAVE NOW TAKEN OUT OF THIS POST. THANK YOU TO MIKE FOR POINTING THIS OUT. IF ANYONE READ THE ADVICE PLEASE IGNORE IT AND REFER ONLY TO THE GOVENMENT ADVICE ON COVID-19.
Today I got my “stay at home letter” officially making me one of the one and half million “shielded” but confined people. See below:
My shield letter. (part of)
So today I got up had a bath and breakfast and then headed for the shed. My partner is in the office fielding calls and organising staff and my daughter is in the back room working on her studies and suporting pupils at the local community college. We do not see each other except at brief moments to organise a meal. I spend most of my day writing letters, which I cannot post myself and rely on my daughter to post them when she goes for her exercise walk in the local vilalge park. If I have your address then you are likely to get a letter in the not too distant future. Every hour I get up and make sure that I get at least 250 steps in. Then its back to the shed and today the the midday concert on Radio 3. Anything is better than Jeremy Vine. Post lunch and I spend time sowing some vegtable and flower seed in the greenhouse and the new rasied bed on the patio. Its very satisifytign but now I just have to wait to see if they germinate. If they do I can sow a second round. So this evening I shall write the blog, short and sweet it will be tonight. Tomorrow brings the challenge of clearing the gutter hedgehogs, servicing the water butt and of course writing more letters. I also have to sort out how I get my 28 day injection at the GPs on Monday, life is full of challenges. Yesterday was full of good news about my cancer now this good as it get phase becomes the long haul to freedom.
So that was the phase that was, to parody an old satirical television programme. Now that I have the results of my scan and my latest blood tests I need to move on to whatever the next stage is. I was going to call it the “Fuck off and die stage” but this seems a bit disingenuous and not a reflection of how I now feel. My problem is that I am not sure what to call this phase. Make no mistake this is a phase which will see me having to battle and although I may hold my own for a while sooner or later cancer will have its way. Cancer is clever and will find its way back to get to me. This is a stage that is just normal cancer warfare although there are those who belong to the radical remission club who advocate loving ones cancer as part of oneself. I am not sure I can honestly embrace that view, it’s in my nature to grit my teeth and focus on the required outcome and try to move consistently in the direction required to achieve the outcome. At the moment it feels like a Spock moment: live long and prosper! Perhaps that is a better name for the phase I have now entered. I shall return to this.
Live long and prosper
So I woke to my new leper status of being one of the “shielded”. I get up to find my partner has been to the shop on her early morning exercise walk and is already fielding work calls. My daughter will not rise yet. So I breakfast and try to appraise Sainsburys of my “shielded” status but the phone line to them is down, the web page not corona virus orientated so all I can do is leave a complaint for them to contact me. As things stand where none of us are supposed to go out getting food is being tricky at least safely and within the Boris Rules. Sooner or later it’s going to have to shift. So after a frustrating and fruitless hour of calls, e-mails and surfing its time to self-stab and wait for the oncologist to call.
“He who made a pact with the devil” rings on time with a semi cheery “how are you”. From the first syllable it was apparent he wanted to be off as soon as possible. Can’t blame him really but he could hide it better. I told him about my DVT which warranted a grunt and then we were on to my blood results. Apparently they are good, which I knew and my anxiety about my higher ALT (liver function) was apparently misplaced as was my concern about my platelets. The oncologist theory about the ALT elevation was that I might have had a drink, I should be so fucking lucky it is now over a year since I have had any alcohol, perhaps I should start. The bone scan shows my spine cancer lesions are no bigger and appear not to be doing anything aggressive, although I get back ache more now, but that could be lack of exercise. The lymph system tumours in my hips have reduced from 25 mm to 15 mm, for clarification that’s smaller. In the words of the oncologist “it’s as good as it could be”. He said he would write me up for a tablet rather than an injection but I am not sure if he meant for the hormone depletion or the DVT injections, but I will find out when I get his letter. He will see me again in four months, not the three I was expecting, so I am clearly not a priority or a concern. He said he will send me a bloods form but he would have none of my requests for monthly blood test because he said he would not do anything with them. Totally missed the point or just did not want to get it, I doubt he got it, he is not the most emotionally intelligent consultant in the world. So that was it, I’m as good as it gets paraphrasing Jack Nicholson who famously said to a full psychiatrist’s waiting room, “Supposing this is as good as it gets?” May be that should be the name of my new phase; The Good as it Gets Phase. I might well go for it.
After the brief oncologist call it was time to retreat to the garden and to assemble the new raised bed that arrived during the oncologist call. There were supposed to be two of them so I spent time e-mailing the supplier via Amazon. The item is no longer available, made in China, so no surprise. My guess is that we got the last one and will have to wait till Christmas for the next one to arrive. Any way once I had sorted out what diagram 1 actually meant I put the thing together. My partner helped me place it on the patio and casually noted that it needed to be weather proofed and wandered off. She was of course inconveniently right. I fished a half tin of garden furniture varnish out of the garage and set to painting the thing. The task took more time than I planned as I had to start with the underside and then flip it to complete the job. Getting the liner in was tricky until I remembered I had an industrial stapler which would do the job. So it now stands proudly on the patio full of compost and waiting for me to decide what to plant in it. That is a tomorrow job.
With that done it was time to kit the temporary greenhouse out. In went the compost, pots, seed trays and the stuff we bought from the garden centre a couple of days ago prior to my leper status. I got as far as planting the asparagus in a very large pot before deciding I had had enough for the day. So I change out of my work clothes and retreat to the shed for coffee and the last sugarless biscuits.
The temporary green house now fitted out.
Once in my shed I open my
next package to find the reconditioned notebook that I ordered had arrived.
That is something I shall fire up tonight. It is a real bargain with 1Terabit
SSD drive, Window 10, 8meg of RAM and a life time Office Pro 2019 licence, and
Core i5 processor all for less than £280. I’m looking forward to fitting it up
and seeing what it can do. It is smaller and lighter than my current laptop,
which I up graded recently so I shall sync them and use the new one to travel
with. I leave you to spot the irony in that.
It arrived today, my leper text landed late afternoon. So
I will emerge from my shed in late June. This time last year I was isolated in
a ward in a Jamaican Hospital, it feels like history is repeating itself.
“To:ROLAND WOODWARD
Mon, 23 Mar at 17:50
NHS Coronavirus Service: We have identified that you’re
someone at risk of severe illness if you catch Coronavirus. Please remain at
home for a minimum of 12 weeks. Home is the safest place for you. Staying in
helps you stay well and that will help the NHS too. You can open a window but
do not leave your home, and stay 3 steps away from others indoors. Wash your
hands more often, for at least 20 seconds.
Today started okay with an earlyish breakfast. My partner had been to get a paper and a loaf and had settled into the office to start a days work fielding the many questions about the current situation and organising the workforces tasks. My daughter went to work meeting to return later to hunker down in the back room to work. I went to the shed.
Good things in my shed
The best thing in my shed
10:30 rolled around and I spent the next two and a half
hours talking into my laptop. All work and discussion about how the team can
operate from work. Lunch and a quick sandwich during which Mr Amazon arrived
with my new comfy slippers and a temporary greenhouse. So my afternoon consisted
of building the greenhouse with a little help from WD40 to make it all slide
together. Of course life is not simple as I needed to adjust a couple of trees
to fit it in, but I got there in the end. It was time to do the crosswords and
eat an orange when a friend rang. It was lovely to hear from her as she is self-isolated
with her family for at least another week and maybe more if we all get locked
down. We chatted as she made tea for the family and compared notes on
activities and the perils of food provision. It was really good to have the
contact and to hear how someone else was dealing with things.
I packed up my shed and retreated to house to find everyone still in their spaces working away. I followed suit in the parlour and began the blog. I will need to do some pre oncologist preparation tonight as he is ringing me tomorrow; I want my scan results and have questions about my bloods. I also need to prepare my routine for the next three months so I can emerge as a new and fabulous creature from my lava stage. In the meantime me and Rocket have a war to wage.
It’s Sunda’y and a lazy start with coffee in bed. However the debris from last nights meal need to be cleared away and washed up. It was a lovely meal, made lovely by the fact that my youngest daughter was with us and two old friends joined us. It will be the last time we entertain for a long time as I fall into the high risk group and I feel that I am not being given much choice as to whether I isolate or not. Family and friends are already angry with me for my attitude and my behaviour. I know it is out of care and love but I find this situation difficult. I sense anxiety everywhere that I experience as being disproportionate and vaguely paranoid. Not a popular view but that is how it is. Normally I would hug my daughters and my friends but this weekend and last night we all remained “untouched”. It is an uneasy state to be in and I am envious of those who are able to be in their clans and go on hugging and being tactile. It just increases my sense of leper status. Something to be preserved; but placed in a colony. Like the lepers I am not the infectious one, I just have to carry the projections of everyone else’s anxieties about loss, death and fear of annihilation. I am not saying there is not a risk, but statistically there are other things that are more likely to kill me, crossing the road for example.
SPRINGALONGA Europes last leper colony; or is it?
So today is Mother’s Day and my daughters give presents
and flowers to their mother over a late breakfast while I arrange for some frog
spawn to be brought round by my partner’s brother. By the time breakfast is
done and we are all preparing for the day my partners brother appears with one of
his daughters and a bucket of frog spawn. There is a socially distanced
conversation on the door step and then a waved farewell. My youngest daughter
leaves to drive home taking my stock of beer and lager with her as I will not
be drinking it, any beer left will be used to cook with. We wave her good bye
without the usual hugs, it’s a crap way to say farewell.
I retreat to the garden briefly to put the frog spawn in the pond. It will be interesting to see if it survives the transfer and we get any tadpoles. My partner goes off to take food her to her mother, my eldest daughter busies herself with preparation for work and I prepare to start reshaping the garden so that we can locate the raised vegetable beds and start growing some of our food. The garden is a challenge at the moment but I scrapped the old mini green house as it fell to bits when I moved it, cleared the patio ready for its raised vegetable trug, and cleared all the old pots and seed trays into a fresh space ready to be used. The garden swing seat has been uncovered so that I can collapse onto to it when I need a rest. I am appalled by my lack of fitness, I must get into an exercise routine and quickly.
My partner returns and we walk to the village shop to get a paper and some orange juice, where we witness a sturdy shop assistant deny a woman two loafs and only letting her take one. Hurrah for sense and the moral fibre of co-op staff. We walk the long way round the village to get some exercise and come across someone standing chatting in the street carrying a large pack of toilet rolls. It was very tempting to mug her but it seemed a little over the top especially as she had a child with her. So home to agree tonights meal, of course we have looked at the sell by dates on everything we have and order them in the fridge, so tonight will be mince as it is the shortest use by date; yesterday. As for tonight , who knows.
A day to celebrtate a bit with my new blood results in. Time for a new toothbrush I think and a fond farewell to the lastest one. Important to keep the dental hygene regime going in my condition.
Farewell to my latest toothbrush.
Now for the all important blood test results.
Go me on the PSA front, down again. The ALT level has risen sharply which is related to Liver function, I am hoping this is due to the blood thiners I am taking for the DVT. The Bili is also a measure of Liver function which is in the normal range, so hopefully supporting my thoughts about the blood thiners. Any wway I shall be able to ask the oncologist on Tuesday when he rings me, providing he is still able to. Have to say I am peeved that I will not be able to see my latest scan results. I need to find a way of getting access to them.
Another momentof joy when I realised my leg hair is growing again. Hurrah!
The rest of my day has been about sharing various messages and pictures sent to me about the current situation and planing the garden for this year. The result of this is that I have bought two raised vegtable beds, bags of compost, millions of veg and salad seeds and some emerging veg and tomatoes plants. Sunday will be about reorganising the garden and the many pots in it to make space for the vegtables and new beds.
Tonight we dine with friends. Probabley the last time for a while.
It’s difficult to be Jolly when your waking thought is
the blood sample to be taken to be followed by a self-injection, but I tried my
best. After a swift breakfast and noting that my partner was already in the
office fielding calls I wandered off to the GP surgery. In the face of the
corona virus the waiting room had been reorganised to keep the infected out and
those without seated well apart.
The new virus protection at my GP
An empty waiting room with virus spaced seating.
I was called in by the masked nurse and who examined my
blood demand forms and then stuck the needle in me. All over in a blink of an
eye really and then I am walking out with a fluffy cloud of cotton wall taped
to my arm. I waked down to the village café, which remains open despite the age
of the owners. I order a bacon baguette and a coffee not knowing that Boris was
going to order all cafes and the like to close this Friday night. I have time
to enjoy my roll before I walk back home to self-stab.
I’m getting quite bruised around my gut with all this self-stabbing
but I guess its unavoidable. I retreat to the garden shed and start to prep for
the work call that I am booked into at 10:30. The call goes well and I set
about editing a draft letter for the services we work with. I spend the rest of
the morning drafting letters and sending them off to the team to be edited and worked
up into a publishable form. A brief lunch with my partner and then I retreat to
the garden shed again. The postman delivered some RAM for the laptop so I spent
a few minutes installing it. No problems, all seems to be going well. I write
letters and check my e-mails for the afternoon until I go down to the post box.
I notice after having put the letters in the box that the collection plate is
still saying Tuesday. I wonder if the letters I posted earlier in the week have
been collected and I begin to get irritated at myself for not noticing the
delayed flag. I tramp back home. Back in the shed I write a bit more until my
daughter returns from work and we have a discussion about her options for
working. As she works part time in the local community college she has some
work options but she was concerned about me if she remained in contact with the
students. We talked about the options and then she went of to the gym to train.
That’s something she won’t be doing again for a while.
The view from the shed
So with work done it was time to sort out my laundered
clothes but I was niggled by the post box not being emptied. I decide to go to
the post office, which is also home to a local provisions shop, and ask if the
post box was being emptied. I wander round the shop and pick random items that
I have not seen elsewhere. By sheer chance the post office is having its pick
up so I ask the postman if the box in the village is being emptied because the collection
plate is saying Tuesday. He says the plate is stuck but the post box is being
emptied. Do I believe him? Maybe, I will see if my letters arrive. I return
home with yet more bacon.
bacon on the trotter
Jolly Bacon
Dinner comes from the chippy who have chicken and fish to fry, so its luxury tonight and we get to save our last in date mince for another day. Tonight will be blog time and hopefully a film. I notice that I am tired and do not feel I have the energy to do anything intellectual like read a book, its vegetable time.
A day of work and aggravation. So I get up to find my
partner in the office and already having talks with her staff and fielding questions to which she had
no answers. I left her to it and had breakfast before settling down at the
dining table to reassembly my laptop with a new mother board. The reassembly
went amazingly well and I had only one unaccounted for screw at the end of the
process. I put in the final case screw and turned on the power and there was a
blue screen and then a message telling me that the computer had detected a failure
and was collecting data. I waited as the percentage counter clicked over and
then the miracle, the machine burst into life and blessed me with Windows 10.
All before 10 o’clock. I was rather pleased with myself.
Of course the fact that it was 10 o’clock meant that I
had t go upstairs and self-stab (left side today). My belly flab is beginning
to look like a pin cushion.
I walked down to the village co-op and bought a paper,
returning to complete the crosswords over a coffee. After the short break I set
about reading and editing a draft note a colleague had sent me. It took some
time until my partner and I had time to have lunch. By this time my eldest
daughter was up and looking for a space to work. So after juggling room heaters
she settled down and I retreated to my work space in the garden shed to finish
working and to have the telephone call with my colleague.
With work temporarily out of the way I can settle down to write a letter. One of the joys in my life is to write letters to friends especially surrounded by my garden. There being enough time to catch the post I head of to the village post box and then take a walk around the village collecting a paper on the way. Back to the garden shed to read the local newspaper and have a coffee. I check e mails and find I’m being requested to consult a colleague and get something done by lunchtime tomorrow. So I have more work to do and meetings to arrange to complete it. As part of this I manage to install Zoom on my laptop and indulge in an half hour training video.
Time for tea and then the realisation that my partners singing teacher is due to arrive. I retreat to another room to find that my laptop has developed a flickering screen. So it’s off with the back and a prod around. It seems to have done the trick, so I can get on and write the blog. My eyes are tired. I am generally tired and feeling fatigued by all the corona virus wash of news, counter views and opinions. I’m tired of all the cancelling things and confining myself to the four walls and the garden. It does not feel like an environment where I am getting better. Still tomorrow I give the blood that will tell me how my body is doing and whether the oncologist is going to tell me I’ve done well enough to go to the next phase or whether the medical profession think they still have a trick up their sleeve. If I were a betting man I’d lay odds on being told to go away and wait for the telephone call and an audience in a year, in others words the “Fuck off and die” phase will start. Tired.
I think my body is trying to avoid being injected. It
woke up at gone 10 o’clock today so that the first thing I had to do was self
stab. Once that was over it was time for breakfast and a trip with my partner
to the garden centre to buy meat from the butchers there. While we were at it
we also got vegetables. So we are no stocked for a while. Feeling pleased with ourselves
as hunter gatherers we celebrated with hot chocolate and Panini’s.
While in a wining mood we decided to go to Sainsburys to convert the euros that never got taken to Spain back into good old English pounds so that we could squander it on things like bread and eggs in these difficult times. While there we toured the aisles out of curiosity really but picked up the odd pack of dishwasher tablets and washing powder tablets. By pure chance we arrived at the toilet roll aisle just as a callow youth was unloading a pallet of toilet rolls onto the shelf. Poor lad had no chance. I doubt a single packet made it to the shelves. He is probably receiving treatment for PTSD or a recurring nightmare of being swamped by a swarm of locusts. Anyway we came away with an unexpected bonus of toilet rolls. We got our booty home as soon as possible and my partner squirreled the provisions away.
The nightmare that is corona virusThe imagined saftey of sufficency
To my delight my new mother board for my laptop arrived, but before I could get to work on it I had a work Zoom conference to attend. My colleagues and I discussed what our response should be to the corona virus outbreak in relation to our Enabling Environment work. I am to draft a note for prisons to share with my colleagues as soon as possible. I had a brief chance to wish a friend happy birthday before tea and then I rang my sister for a long chat about how we are both surviving being in the “elderly “ at risk group. I think I would sum it up as so far so good. I did not feel like facing the rigours of putting a laptop back together so my partner and I reviewed our updated civil partnership album and gave the thumbs up to the photographers.
Tomorrow everyone in the house is working from home the schools are soon to close and the county council is enforcing working from home for all those staff who can. The whole situation has a Kafka like feel to it. The world feels like the Kafka castle and my position feels like the creature in Metamorphosis as I turn from man into a giant insect left to die in a room. These are strange times, I feel a T shirt coming on.
