Hey guess what, because of my myeloma (it was on the news again) and whatnot I am on the list of the most vulnerable and so we get a letter from the NHS and our groceries delivered as a priority – whooa!! Party at my place !- (not really) – I have to stay in home or garden for 12 weeks which for most is torture but personally I see it as bliss. It’s a strange situation because when I spoke to my consultant he confirmed that my bloods were normal and therefore my risk (while possibly greater than the average) was not exceptional but the news has made it clear that us myeloma sufferers are in that special super risk category – so home I stay – boo hoo (not).

I feel very sorry for all those cancer patients currently undergoing treatment who are stuck with the dilemma of attending hospital and its associate risk or not attending, not getting the treatment and thus, its associate risk. Luckily (and it really is fortunate) I have been off the treatment for over a year so my immune system should be reasonably robust. I have had a few bouts of this and that since having the disease and have recovered reasonably well so fingers crossed I should be Ok even if I get a nasty dose. I have been crossing my fingers for years now – I think they are permanently crossed.

Today I didn’t work as to be frank the pressure of work has significantly reduced now that I don’t travel. It’s about the first day for a very long time that I haven’t done a bit of work even if just an hour or so at the weekend. It’s not that I am a particularly diligent lecturer it’s just that I have never got into the habit (a bad one in my view) of seeing the weekend as any different from the week. Who cares what the name of the day is. I prefer to get the work done and then it’s not hanging about screaming to be done while I try to ignore its plaintive cry. Any way no work today instead I put a load of old junk up for sale on Ebay – a tortuous activity that involves – photographing, weighing and packing each item then completing a pretty elaborate form. In the end the whole process probably adds up to a commitment of about 30 minutes per item, which if you only get 49p at the end of the auction, is a very poor return. Quite often I get no bids at all and simply hoik the undesired package straight into the bin. On the other hand, even for 98p per hour it is strangely satisfying to purge yourself of ugly, useless or broken junk.

Maria has had an IT day setting up her systems for virtual teaching. This hasn’t been entirely good tempered to say the least. She has to go through quite a procedure with each parent having to grant permission for their daughter to be taught online and they or someone over 18 has to be present in the room when the lesson takes place. Lucky them! Some of the girls have never sung to anyone but Maria so are freaking out at the thought of parental or sibling oversight. Then she has to invite each girl and arrange times across time zones. She is not a happy bunny having missed out on a nice garden day.

Any news for you lot always welcome. I guess I could be using Facebook or some other platform as all this news is really directed exclusively at family and friends but this blog has 6 years worth of stuff in it now – much of it embarrassingly gobby but I guess this virus incident is a very significant chapter and might as well be included. For some reason I have always had a very secret eye on posterity – something I saw my dad do and didn’t like at the time – and here I am recreating his book of family achievements except in this case they are nearly all mine.

Addressing family now – if anyone wants to start some sort of family specific self isolation news network I would happily join in. The progeny of June and Bill POJAB – but maybe everyone is doing quite enough communicating.

Friends are stuck with this ere blog as I don’t do Facebook with any enthusiasm. Why does anyone? I have to ask its just full of shite and people who you don’t know wanting to be mates  Give me TikTok  every time it just full of cats and dogs doing stupid things and as I have come to note recently, flying squirrely things that fly through the air to land on your hand for a snack and that black and white furry animal you get in America with the sharp face – oh yeh a racoon.

My last day at work was Friday. I kind of miss it.

Testing my new blogging app.

Anyway as you know I write when I have the need not when I have anything to say. So here goes.

Today is Maria’s last day at School. Henceforth she will be teaching singing by video link. That should be hilarious, can’t wait to be a fly on the wall. I am now an old lag having done a several video sessions. The pattern is as follows – several minutes of mouthing and gesticulating across mute screens, a bunch of software restarts and reconnects, exit to find a microphone, camera, cable, have a wee etc, an abandonment for an alternative platform and a couple of pop up visits from somebody’s cat, dog, mum to liven the proceedings. Actually I think one to one sessions will work pretty well, one to group broadcasts are arguably no better than recordings, small group sessions will work only at the whim of available bandwidth and large group sessions will never ever work and never ever have. Those of you that remember Rick Wakeman and his multiple synths and keyboards can picture the scene. I have 6 screens in my studio, ok so three are for the phone box, that leaves three plus, iPhone and iPad. At any one time there will be a group chat on Slack, Emails from Outlook, discussions on the university VLE (virtual learning environment) conferencing on google hangout, SMS texts, and message from WhatsApp – all coming up on different screens. In addition we have 4 camera feeds watching over Nonna. Frankly it’s like leaving some old slightly drugged up geezer (me) remotely piloting the moon landing – every now and then my brain jams and I feel so confused I really do start to wonder if you can get instant Alzheimer’s a bit like a hiccup. On minute nothing, next hurb….ck

back to work I feel better now.

I have nothing wise to say about the virus.

i have added this paragraph after the announcements today Wednesday that the schools are closing and the world is hunkering down. i have a slight sense of disappointment in myself as a person. now reviewing what i wrote earlier i am worried that i will be appear even more self indulgent than normal and people will go off me. however i have resolved not to pretend to be a more caring person than i am as that’s hypocritical. my worries about the virus are selfishly focused around my family and friends. i should worry about the community but i am ashamed to say that even if i do a bit, i don’t do anything about it, so clearly i don’t. i admit it – but does that make it any better

so…

I am (was) lying on my back on the settee. Vinnie is sinking into his bean bag next to me and snoring. The sun is annoyingly bright making me squint as I type this and  my world feels a bit odd, strangely stretched,  flowy rather than roady. This is my second day self isolating as the university sector fizzles out slowly, inexorably and chaotically.

We are being asked to teach from home but the students have moved on and given we are 2/3 through the trimester, are adopting the perfectly reasonable view that they don’t need any more teaching and can just get on with completing the assignments. In other words, ‘see ya for graduation in July.’ Still its going to be fun trying to figure out the best method of broadcasting by video with a large group of young people scattered all over the planet in different time zones with delays of a minimum of minute and a half to the video audio stream. Still fun – its like having your own TV station.

As George said,  this year, 2020, will be the setting for the next generation of mcewanesque novels framed by natural or man made disasters –  The heatwave in 1977 or was it 78, the twin towers and now corvid19. Apocalyptic novels and films like The Planet of the Apes used to be great entertainment now they are a bit too much like documentaries.

If I wasn’t anxious about the family and friends and sad for those that are going to really struggle I would actually be really enjoying this. I am very used to being stuck at home worrying about getting ill (one more illness doesn’t really make much difference) and trying to work virtually also I have a stack of half completed projects to get on with which i am really looking forward to.

I am naturally selfish so as yet I haven’t offered myself up to the community. Others have offered themselves to us, which is nice but makes us feel old and useless and more vulnerable. Community spirit doesn’t do it for me. Pillars of the community are often the same people who complain when a housing development encroaches on their view of an important copse or deliver the church magazine unapologetic about their justifiably rebellious dogs (tugging on their leads to escape the tedium of their owners) that frighten your cats, or don’t like the ice cream van man because he may be delivering drugs as well as 99’s (apparently he does btw).

Theoretically I am one of the vulnerables cos of my compromised immune system. Actually my consultant didn’t seem that concerned as my bloods are normal at present so I am not worried. If I am vulnerable then Nonna must qualify as whatever is more than vulnerable – sacrificial? Anyway she’s not bothered either. She has informed us that she washes her hands a lot so she’s got it sorted. Thanks to Maria’s heroic effort with the Italian consulate (a story in its own right, sadly we can never ever repeat it) at least she cant be deported as she now has an identity card. Mind you i don’t suppose Italy would want her just at the moment.

I haven’t posted for ages so this tells me that my posting behaviour is driven by the sort of spare time you don’t feel guilty about leaving spare. I am saving three hours of travel a day so my bass guitar has been dusted off to fill 20 minutes of those three hours. Isn’t being self-disciplined hard! I am a natural not doer and definitely not a practicer . Talking of not doing I have to be really careful to remember to walk further than from chair to toaster to tea pot to TV during the course of the day. Maria has me walking around the block about three times a week an activity I am ashamed to reveal as I vowed never to become the sort of old person that does exercise or even worse enjoys exercise or worse of all preaches about bloody exercise or worst of worst of all refers to it as good for their ‘well-being.’ Anyway no worries there I grump and groan all the way round particularly if we meet some tiresome individual who wants to chat – unless they have a dog – they are nearly all ‘something doodles’ round us, in which case I can occupy myself with the interesting fluffy species and ignore the species that actually thinks the weather, the virus, the parish council or recommendations for a really good book is anything other than an unwelcome delay in getting home and warm and fat and stationary.

There are compensations en route. Two Shetland ponies one of which eats your windcheater while the other one looks aghast at the stupidity of its friend, one white owl (barn i think) on the prowl at dusk who does a circuit of the same block as us but for a reason! and one otter – seen only once – who was swimming purposely down a stream that as far as we know is devoid of fish, so it may have got lost in the floods or enjoys a swim – perhaps it’s been told its good for its well being.

I have been quite busy at work up until now. Our subject area is one of the few that are expanding, (us – film and midwifery) – btw have you seen the hyper realistic dolls they use these days ? – strewth the one I saw (the class was clearing as I was setting up – it breathed!) and our staff team is small and  spread over lots of students.  I have been involved in one or two interesting outside projects the best one I am not yet allowed to talk about but if it happens I may be leaving my mark on the British seaside. I collaborated on an article about blogging about death to be given at a conference in Denmark (has to be a Scandy country doesn’t it) cancelled due to risk of death from virus – tee hee. I have designed my ultimate secret-fortune-making app which I may well have time to launch during the next few months if I can figure how to build it. The telephone box moves ahead glacially, not through lack of effort but lack of technical skill but I hope to launch it with performances from October 31^st. I wrote two stories for the Mogford Prize but submitted only one. It about a fat granny who eats too many sweets and then mistakes the contents of Lush as sweets and eats them as well – with truly ‘hilarious’ results (not). It will definitely win the ten grand. I have made some fun stuff with the students – an app to make a friend (literally from PlahDoh) and an alternative game interface using plastic flowers and scissors. I am lucky – work is fun a lot of the time.

Other news – I had one counselling session to address some of my absurd anxieties about the risk of my loved one being abducted by aliens. My strongly opinionated doctor recommended it when I went in begging for drugs. The councillor was exactly what I expected. In her 50’s I guess, intelligent, pleasant, reasonably open although I would not have like to push too hard on that door – could have been slammed in my face, took the session seriously all the time, which was probably right but my jokes bombed which was dispiriting. It was great talking uninterrupted about myself for an hour. Bit like this post. I really enjoyed it, but benefit came there none. I didn’t feel anything. Ok I hadn’t soiled myself as can happen when I am allowed free reign to impro but talking is easy for me, too easy some would say, I am lucky, I have loads of willing listeners so I had no big revelation to uncover. No I wasn’t a miserable child, my relationship with my parents, pets, friends, partner, kids is fine. I am not worried about being ill about being dead or any sensible worry even viruses – I am very happy with my life but I fret about ridiculous things, all crazily vivid imagination born but with a strong hint of fable or film – the abduction by aliens thing is actually more or less true – I worry that Maria has vanished into the wood like and Gretel or Little Red Riding Hood when ever she goes chogging (getting sticks) – perhaps she just needs to stop doing things that remind me of fairy tales or perhaps she just needs to stay still and safe forever hands resting on thighs like my beloved Gilbert and George – so you see I would like to turn that particular imaginative obsessive stupid switch to sensible.  The councillor pretty much sacked me before I sacked myself. I think she might have been bored. It seems I am totally sane or at least no less sane than the average, which is a slight disappointment. It seems I just need to put up with it – being sane I mean – so I will.

Love to all

https://lisamarini.bandcamp.com/track/kite

As a rule I avoid researching my illnesses like the plague – indeed if I were to have the plague I would avoid researching that, but I haven’t, thank goodness. Instead I have three conditions two of which are well serious and one is pretty much junior league – so setting aside Jnr. the two big boys are Myeloma and Amyloidosis. On official NHS type documentation they both have surnames and titles and numbers and acronyms none of which I ever taken any notice of, preferring to stay on first name terms, after all we live together.

Anyway my family, are even more avid listeners to Radio 4 than I am and they heard a programme in which a cure for Amyloidosis was mentioned. They very kindly sent me the news. By cure – it is something that alleviates the symptoms and arrests the development of the disease (so yes a cure – I suppose the only thing it can’t do is clean up the mess the disease has already made with those pesky amour plated proteins it sprinkles all over your organs – I guess they persist – but just stay in doors watching telly rather than running around causing trouble. So this cure has been tested on a surgeon whose symptoms (numbness and pain in his hands) were so bad he might have had to give up his job. All this good news springs from the National Amyloidosis Centre – the very centre I go to every year for my running up and down the corridor test and the dreaded reclining tube ride. Being religious in my conviction that googling your illnesses is a recipe for getting iller with illnesses you didn’t know existed and certainly don’t have, I waited until today to utilize my appointment with my wonderful consultant who I have fallen in love with, to find out more.

And I must say it was most worthwhile

1. He has never heard of gene silencing – I am too old, he said – the clever people at the NAC will, so ask them.
2. but he said that I don’t have the hereditary variety of Amyloidosis mentioned by Radio 4
   – Well I must say I am very pleased about that – Family one less worry – whooa!
3. He explained – My amyloidosis is the result of a mutated gene boo-boo that made the myeloma and the myeloma made the amyloidosis. Nobody has any idea why it happens. He said.
   I said, – ‘maybe it just does.’ He put on his science face and left me to hang in an absurdist silence of my own creation .
   A million years down the line the mutation could have led to a new species of supernewell or opposable teeth but no such luck it just made me ill – x 2
4. He assured me the clicky jaw (my jaw sounds like a rusty traction engine when I chew Haribo’s – but only in the evening while watching Strictly) is generally not a symptom of either of my diseases or my new heart pills rather a symptom of getting old.
5. Other than clickyjawitus was I Ok – yes I said
6. Was he Ok – yes he said
7. Anything? –  he said
8. Nope – I said
9. Bloods are fine – he said
10. Number are fine – he said
11. Well there it is – he said
12. See you in 4 months – he said
13. Great – I said
14. Tara – we said

and i was back in my car texting Maria before the scheduled time of my appointment had arrived. I love him!!

So in conclusion who knows whether the new treatment could be used on me – by the sound of it probably not  – but who cares – at the moment the old ones are working just fine and as of this month my numbers have gone down.

…and they may just be down because of this – or rather its essence in concentrated form with a black pepper catalyst costing 56 quid per pot from your favourite global exploiter of the hypochondriacal shopaholic.

It really has been a long time since I posted. I conclude that being ill was/is good for my writing productivity, being quite well is good for everything else but kills off my writing mojo. Not having an incident to report which surreptitiously shows how brave and alternative I am being has blunted my pencil. All that political posturing, all that ‘hey look at me’ aren’t I a free spirit, well I guess it was just a cancer diagnosis -drug induced- panic attack, but despite that it really did make me happy, if not as original or as provocative as I thought/wished.

Some of you are to blame. You said that you enjoyed the blog, so I wrote stuff to be enjoyed – some of you unsubscribed – not you of course otherwise this post is the proverbial unheard tree falling in the forest – some of you found it funny, so I wrote more funny stuff -cringe – none of you read my poems – so like some petulant teenager I stopped writing them.

Hey but I have joined a writing group at the university. “What about me” WAM. It’s about writing the self which as you know is what I do. As WAM members may read this I will say only nice things – I LOVE YOU ALL – but joining WAM has been enough to make me want to write again.

I have really worked at avoiding it for at least a year – longer really. I am very happy not writing. I work, I play, I worry – the usual stuff. Writing is no longer important. Excuses like I am too busy – bahh cobblers. Today I graveled the back, yep the back, the bit nobody sees, where nobody goes apart from the cat for a poo, the back of my red telephone box. It needed gravelling more than I needed to write. So there it is – my writing comes second to a spot of redundant tarmacing. Poor cat.

I have been advised to keep my posts short. So…