Category Archives: Cancer

“The sun shone, having no alternative, on the nothing new.”

Please be reminded that this blog is an ego trip. It is about me me me. There was a time when I felt enthused to include news of other loved ones but they didn’t like it much, so I stopped with just the occasional lapse when I couldn’t resist showing off about a book a gig an album or a trip. Trust me when I say there could have been a good many lapses over the years but I have held back – besides which, who in what universe wants to read about other people’s children’s successes.


10 years have passed since I was diagnosed with cancer. For a time I thought my time was up and the idea of ten years hence seemed ambitious, optimistic, unlikely. But here I am, ten years older, STILL ALIVE, a milestone worthy of a blog post at least.


Talking of the blog. I gave it up a while ago. A good move I think. Best not to say things if you have nothing of interest to say. If only I could apply that to life in general. I have never been able to modify my enthusiasm for sharing my thoughts, whatever the quality, and to whomever happens to be in range at the time. How often have I come away from a conversation or a meeting wondering why I felt the need to ‘contribute.’ So much better to have been the mute, thoughtful one and leave my audience guessing what profundity might be silently stirring, but no, off I go with a stream of ill considered deliberately contentious twaddle. Maybe it’s part of my charm or more likely it’s just a childish desire to be the centre of attention. How pathetic! I hate the notion of anything being too late to fix. Sub par physical fitness, excessive greed, old man views on modern matters but in this case my mouthiness is incurable – which brings be back to cancer.


It all began in 2013 with kicking a bonfire, falling flat on my back and triggering a Temple-of-Doom-like runaway rollercoaster of ambulance, pain, chiropractor (useless exploitative crap), physiotherapy (useless but not exploitative) tubes down throat (terrifying), biopsies and finally, sometime in the spring of 2014 the diagnosis that changed everything and realised in vivid Technicolor with full 12.1 Dolby  surround sound most people’s worst nightmare. “You have incurable cancer.” The effect of which cannot be captured in words but would not make for a catchy song either, so best left as empty parenthesises ( ) or the words that my late mother-in-law called forth on so many occasions from too much salt in the tomato sauce or a suddenly deceased family member ‘whata canna you dooa?’


Well it turns out you can do a lot but you need


  1. A wonderful loving family
  2. The NHS (and the right drugs)
  3. A surprisingly accommodating employer
  4. Something to do
  5. LUCK


and it seems I have all five, at least for now.


I would like nothing more than to continue to be so blessed. I despise that last word but just at the moment can’t come up with another. The rhythm of the sentence is pleasing so a monosyllabic final beat is required. Any ideas?


Since 2014 there have been some significant personal milestones mostly medical or related to medical – shame that – would have been nice to have milestones met as the result of great personal endeavour.


  • Giving up alcohol all together finding a substitute vice in sweeties – 10 years during which I have had just a few mouthfuls of fizzy wine to be sociable.
  • Injecting myself in the stomach and awarding myself a VC for bravery
  • Abandoning the stem cell transplant treatment when advised that if it doesn’t work you drown in the blood that collects in your lungs and stomach – nobody wants that do they.
  • Working my way through a few treatment options and finding the optimum drug combo had the ominous ingredient of thalidomide and a yellow warning label about its dangers – somewhat similar to those found on fences around pylons eg. ‘Danger of Death.’
  • Becoming a steroid junkie – boy they make you feel clever
  • Being deconstipated in hospital – not a dignified process but sooooo rewarding
  • Related to above – Becoming unpleasant and gobby due to steroids making you feel like you have superpowers. I still feel bad about how I behaved when I wasn’t discharged speedily enough.
  • Discovering writing as therapy, this blog, lots of poetry of mixed quality, shoddy short stories.
  • The red telephone box that talks a bit like me and associate obsessions. Too many to list and yes, they continue unabated.
  • Going nuts for old phones, cigarette lighters and kitsch from ebay – steroids again – they encourage consumption and extravagance as well as gobbiness.
  • Working from home. Teaching on zoom (yuk) probably for a total of around 4 years – something of an endurance test for me and the students.
  • Dreading the monthly blood results, failing to get used to them even after 10 years.
  • Stopping feeling faint – once the atrial fibrillation was bought under control. The downside is you nap a lot.
  • Last couple of years – Feeling fitter than I have done as amyloidosis goes into temporary remission – very nice to know as it doesn’t often happen
  • Consequently, feeling lucky.


Yes it’s not the most important but it is the most present, most recent, most tangible change in the last ten years for while surviving is certainly pleasing for me and my loved ones retiring is something less existential and easier to write about.


It means I have more times to do other things that aren’t immediately productive (not that I did that many productive things before but I always felt as though I should be doing them) – I had to do a lot of preparation for lectures and here is a confession dear reader – I knew bugger all about the stuff I lectured on, so the best I could do was hope the students hadn’t read more than me – they hadn’t so I scraped through. There is nothing I know a lot about and this is the essence of being an academic – drill deep – so I could never pass muster -I am a shallow water paddler dabbler consequently it was a slog and I have to say not that rewarding but it did give the impression to others of productivity. PowerPoints and videos got made, work got graded, students got degrees blah blah blah. Anyway, that’s all over and I can’t say I miss much. Had we had a water cooler I might miss standing round it chewing the cud but most of the time we worked quite independently and didn’t see that much of each other. That said I had some really nice colleagues. For the most part we were an uncomplicated bunch in digital media, we didn’t fall-out or row or sulk or really gossip and perhaps I miss slightly the reassuring niceness of a bunch of blokes who like me, admired websites, monitors, computer games, animation, video codecs, youtube, and ip addresses so so so much more than personal relations or the news or world peace or books.


The future beckons and its not so scary as it was, not least because Maria and I have bulldozed aside some of our nervousness about travelling or any changes to routine like parking in a different car park in York. We are far from intrepid compared to just about everybody, but we can get in cars, taxis, on planes and trains and complete the journey without needing sedation and a month to wind down. We have had some nice holidays or as they are described these days ‘we have made memories’ – blaaaahhhhhhhhhhhh – what a horrible Instagram-tainted idea – as if you can make memories by going somewhere. – memories are made whether you like it of not by anything at all, at any time, in any circumstances, they can’t be contrived – a memory is no better if it is framed by the Acropolis than it would be framed by Watford Gap services. Who doesn’t have memories of their crinkle cut fries and urinals.


So what are my plans.


Let’s face I am quite consistent I have been wanting to master walking bass for twenty years now and I still plan to do so. The only thing that prevents me is not practising walking bass on my bass. I frequently imagine addressing this.


I want to make my ring ring cycle yes two rings – get the pun – phone box – trouble is I keep making stuff and not liking it enough to leave it alone. I dismantle it thus destroying what little good stuff may have inadvertently populated the largely empty shell. Anyway I have yet another scheme to nail this one.


I enter poetry and short story competitions from time to time with no success. This is because what I submit is not that good but then what wins is not that good either so I am clearly in with a chance.


Like every retired middle class saddo I am doing duolingo. Italian would be sensible as I have a grounding, but Maria is getting really good and G is off the scale so I am doing German. Nah nah na na.


I did loads of carboot sales selling last year. I had aspirations to do it semi pro but I have completely gone off that. I can’t be arsed with trying to make money I just like sitting around for five hours meeting odd bods. I am prevented from buying anything because we have no room.


I planned to sell semi-pro on eBay. I have completely gone off that. I can’t be bothered to make money it’s time consuming and boring. I like buying but see above.


Thus ends my celebration of ten years of extra existence. I really am lucky.






“The sun shone, having no alternative, on the nothing new.”

Samuel Beckett is my hero. This is based on seeing only one play (Godo) and being pretty bored, trying and failing to read some others, getting no further than the first page or so of one of the novels (cant remember which one), listening to, but not ‘getting’ several of the radio plays, and persuading Maria to perform NOT I in Scarborough – so I love what fragments of his work evoke in me but I have no time for the rambley long stuff. The line above is perfected by the unexpected ‘the’ before nothing new.








Well, I coped brilliantly with that…

Didn’t I!

My disposition inclines me toward panic and pessimism, and I can only apologise for the stream of worries I offloaded onto my blog during the last week.

The results from my health tests have been very positive and now I am left with the shame of not having been able to face them with a bit more guts. Oh, to be the sort of person who can face fear with a strong jaw, a stout pair of brogues and a slice of Dundee cake. Stuff it I am a wimp.

Anyway, the worse is over and to celebrate I am contemplating killing off this blog to prevent me ever vomiting up my (what should remain) private and personal concerns to my loyal readership again.

Escaping some more

I have hours to kill before my scan and results. You probably haven’t noticed (ha ha)  but when I am on my own and discombobulated I like to share a disorderly stream of reflections and anecdotes. Call it therapy if you like – I call it escape.

The hospital accommodation is super posh in a minimalist way. It’s on the fifth floor of a brand new science block. The ground floor is wall to wall labs for UCL immunology students I think. Really really impressive looking kit being manipulated by really really impressive looking students. You can sense the brainwaves circulating as you enter. Access to the accommodation means you need to do fancy things with cards in the lift which confounds all of us wrinklies who were hoping for the presence of an attendant in a maroon uniform sporting a peaked cap. The room is small but the quality is high without being fancy – quite lab like actually – absolutely no complaints. Breakfast is like a child’s pack up from a disinterested parent but is delivered to your room by a charming hostess. Chocolate muffin, clementine, long life croissant, milk, Museli + polystyrene bowl for said – to be honest – yuk – but again this is all on the house, so zero complaints. Only two things could, for some, be a deal breaker, both are somewhat relevant to the human computer interaction  module I teach, so worth documenting in this post. Remarkably it appears (and remember this is part of a super efficient eco build) you cannot turn the TV screen off. You can turn the TV off but the screen glows like a full moon throughout the night smack bang at the bottom of the bed. Insomniacs would go bonkers. I had a look at the back of the telly and it appears that it’s not a telly at all it’s a computer. So now it makes sense. It on permanent standby just in case it gets an instruction to do something important, the fact that it has no means of receiving an important instruction is by the by- It does not know it’s a Telly!

Hey and guess what neither can you turn the air con off. You can adjust the room temperature by accessing a tiny tiny button that gives you about 5 seconds to read the screen and respond appropriately, it’s effectively a wack-a-mole control, should you manage to wack the mole you basically have three times three options: on, on a lot, on a hell of a lot, cold, hot, Sahara, windy, stormy, hurricane. So my night was spent engulfed in a windy, warm, noisy airflow oscillating between so sweaty my tee shirt was wringing and so cold I had to put my cardigan on. 

This and other experiences yesterday have convinced me that some technical innovations are actually based on the principals of gaming. Here’s a few examples.

Rail tickets on your phone. You get sent a link to your ticket. Super all done I have my ticket. What you may not have appreciated is that the link is to your account not your ticket. Now in all probability you set up your account at the last minute in order to purchase the ticket so you haven’t necessarily memorised your account details. So the game is how much embarrassment can you endure when the ticket inspector wishes to see your ticket and your confident ‘here it is’ manifests no ticket but an entertaining game of guess the login details that may include a password reset while entering a tunnel with no internet access.

Paying for the taxi with Apple Pay. The payment device is attached to a side panel inside the cab. The cab is quite dark inside. The device is quite small. Because of early onset cataracts and outdated glasses prescription you can’t see the screen. You know that you have options as to the amount of tip but can’t read them. In your haste to look like an experienced Londoner you press random buttons and hope. You then pass a massive cash tip to the driver just in case you have tipped him nothing at all. He looks surprised as if you had just passed him your gold watch. Which of course is another option.

Paying for coffee at Pret. So I have got the hang of the Apple Pay thing after the taxi debacle. I put on my London face, not too smiley, not too much of a rural grin, authoritative, in a bit of a rush, successful. I hold my finger at the ready as the person before me managed her transaction in a fraction of a second and set a high bar. Go! Pay! I look down – there are three payment machines, any of which could be the right one. How do I know? Should I perform a sweeping gesture over all three or would I have just treated the queue to a full complement of macchiatos? My hesitation had reached an uncomfortable 5 seconds. I mumble something about which one that goes unnoticed she is already onto the next order. Finally one of them lights up and I recognise my order. I press and Siri kicks in. Yes I have over depressed the home button and the Siri game has barged in. More frantic button pressing – it beeps I have paid. No one has noticed, no one cares. A minute or so later the barista confesses her ordering system dropped my order. She apologises nicely, she’s friendly. We bemoan the perils of new technology, little does she know.

An adventure

What an adventure!

It’s probably good for me but I don’t like it. I have been returned forcibly to the world of other people. I have been shielding since March 2020, that’s 27 months without doing the stuff that other social animals do regularly. Shopping, taking a train, talking to strangers (not wearing masks), taking a taxi, sharing a lift, using public toilets, staying in a hotel, eating in a restaurant. I have packed all these activities into the space of just 6 hours. How ironic that I have engaged with these most risky activities in order to evaluate the risk of one of my diseases evolving into something more risky. I feel like I have had a shot of compressed London essence straight into my veins. It has left me exhausted, confused and feeling very old.

So I am in Belsize Park – it’s posh – not mega posh but its London for the comfortably well off. The old cliches certainly apply –  it’s full on multi-cultural which makes one feel immediately good and modern and young – the school kids talk posh and have raggedy hair and quirky clothes (Outnumbered land of course!) the dads holding their daughters hands on the way back from school are scruffy, in an expensive way. They don’t look too happy. I sense a Netflix media deal gone sour or an important call from a client missed. They don’t look like bankers but maybe they are in disguise. The women wear cropped off trousers and are tanned and about 40. They are in a hurry to get somewhere or finish something. Teenagers gather in outdoor cafes and buy expensive coffees.  Aside – It occurs to me now as I sit outside Prete (a safe choice, I was going for the Tapas place but got scared yes scared pounding heart, checking for wallet and phone, wallet and phone, wallet and phone) how I only focus my attention and analysis on those individuals who I can imagine myself being or knowing intimately in some other life. This indicates I have an inflated view of my prospect should reincarnation be true. The delivery guy outside Prete with his very scruffy scooter, still with L Plates on, didn’t interest me, his scooter did but the person is out of my range. The newspaper seller who I thought was talking extraordinarily eloquently to himself (it turned out he was talking to someone out of view)  I just wouldn’t be able to play him. My world view is exclusively middle class. Any other class up or down is out of my range. I suppose that’s how I feel now about London, it’s just out of my range. I can’t play/do London anymore – at least not on my own like I am this evening, maybe with my boys and girls to hold my hand. All this rampant Londoness is just across the road from my hotel and here I am hiding in my room with Wheeler Dealers on the telly in order to avoid the scary metropol that I used to love and thrive on. Earlier I braved a stroll down towards the tube station but my feet felt awkward. I wasn’t used to the continual changes in surface, the lumps and bumps thrown up by kerb stones, gutters, rubber flooring for outdoor cafes and plastic ramps running off pavements into the road presumably there to make the journey for wheelchairs, prams and scooters easier. Yes scooters and electric bikes everywhere. Parents scooting their kids (twosie style) back from school and nobody bats an eyelid. Nobody says oh that’s cool, that’s a fun thing to do – it’s as if they are putting the bins out – it’s that interesting. It’s like the circus is on the street doing fabulously virtuosic things but no one gives a shit.  Back to my stroll or rather stumble  – For those of us with varifocals you end up having to keep glancing down at the ground like to avoid scuffing the soles of your shoes and producing a sort of involuntary disabled moon walk. In my efforts to finder a flatter surface I entered a book shop. I felt self conscious and  nervous because the owner/assistant was speaking French, some young people inside were discussing BOOKS, recommending titles to each other. Another woman was speaking to a child in an Eastern European language and the child was replying in English. This is out of my league I thought as I sidled out without buying anything. What has happened to me? I was quite brave once. Quite independent – secretly always a mummies boy but at least I knew how to fake it. Now I seem to be cast as ‘old man found confused on London street wondering where his hootspar and his glasses went.’ Yep on leaving Pret I reprised the wallet and phone pocket pat and added glasses only to find them perched on my head. In my mind all of Bellsize Park stopped to watch and to mock 

Earlier this afternoon – 

After a very straight forward and remarkably efficient bevvy of tests and probes and prods and running up and down the corridor myself and another elderly couple set off to find our new accommodation. They were both very poorly and very slow, she was on dialysis but as we were both off to the same place and I was a comparatively young sprightly chap  I thought it charitable to accompany them as their guide. She was really really struggling to walk but declined all offers of help from either me or her husband who was only marginally less feeble than her. The Royal Free is a famously chaotic site with buildings and departments all over the place and lifts that offer destinations that make no sense, like SL and UG. It’s built on a very steep hill and  as the journey progressed I began to really worry about my charges capacity to make it to the accommodation without  a minimum of one maybe even two wheelchairs. I could imagine me pushing the less feeble husband while he pushed his wife – bit like a geriatric bendy bus. Needless to say my infallible sense of direction together with their increasing desperation led us literally back to where we started and panic began to set in all round. I could at this point have abandoned them and seriously contemplated legging it but I felt a heroic obligation not to, as well as fear that I might reencounter them at breakfast and suggested that while I go off and figure the way out, they stay put and lean against the wall to recover and then I would come back and get them. This routine was modelled on a sort of mountain rescue principal where the fit able one leaves the injured on and one other behind while they make the descent and alert the helicopter. Fortunately before this doomed to disaster plan was put into effect (no way would I have ever found them again)  a hospital orderly came over and asked us if we were lost. He was clearly on his lunch break and we were clearly catastrophically lost as we had stumbled into the staff restaurant, an area forbidden to patients due to Covid restrictions. Anyway he cheerfully walked us the whole way (at what was now an arthritic snails pace) all the way to the reception area of our accommodation. Because of the speed restriction this must have taken 30 minutes even though it was only a short distance. I offered him a generous tip to at least pay for his missed lunch which he declined. What a nice bloke but how useless was I!

Can I find my brave again? (Have you noticed the prevalence of this grammatical structure – I hate it – universities use it in their marketing all the time – ‘find your exceptional’ ‘live your excellence’ ‘do your extraordinary’) I doubt it. My only comfort was that this was my first day out on my own for such a long time and that if I force myself to go on more adventures I might even manage to eat at the tapas bar and buy something at the bookshop next time. 


Have you noticed – I only blog when I am worried.

Like busses, my health tests tend to come along all at once. Within the last 10 days I have had: my regular hospital blood tests, National Amyloidosis Centre tests part one, more of those to come on Thursday and Friday, glaucoma tests, more of those to come in June, and PSA tests, results today – not doubt more tests required. Ominous letters from the hospital and emails containing incomprehensible results are as common as TV adverts inviting subscriptions to funeral plans or ‘no fuss cremations’ ‘in afternoon episodes of Antiques Road Trip. Nothing blunts your appetite for the transitory absurdity of life than frequent reminders of death. What is deliciously fragile but full of promise morphs into a one way trip to nowhere land. Nothing sinister to report so far I am glad to say but I wish my tests were distributed a bit more evenly throughout the year so that my petty anxieties were less compacted – speaking of compacted I have to go to the dentist to have my newly minted and very expensive temporary tooth thing, yes you’ve guessed it, tested. But on the subject of health here is an interesting thing: my blood pressure is super good – miles better than usual – I could claim it’s all the sports and healthy eating I practice but I can only assume it’s the drugs I have been taking for 15 years taking their time to have any effect. Either that or I am very very chill, but the evidence (see above) is that I am really really not.

I am truly truly sick of health stuff. It not a subject that interests me even when it my health being discussed. ‘How’s it going Chris?’ or worse ‘How are you coping Chris?’ usually provokes an impatient ‘fine’ accompanied by a look of “Really! do you care!” “Do I care to discuss it” – It’s frightening, boring, time consuming, brain consuming, cash consuming (first class tickets to London (in order to avoid Covid close encounters) to the NAC this week). It also causes me to exhaust myself performing the role of how brave I am, how devil may care I am, how resigned I am to the progressive decline of all my faculties until my body is towed to that great scrapheap in the sky like my gold Ford Cortina did in 1983 and Maria’s Ford Focus did just last week. Yep her car died an unspectacular death at the hands of Leon the mechanic  whose graveside prayer comprised ‘Well if all goes well it will be a grand and if it don’t, it will be two and a half grand.’ So the next day we bought an old, but red and shiny Kia, the cheapest car they had in the garage leaving them with a dead Focus, a full spare can of diesel and one of those magnet things to hold your mobile phone on the dashboard which Maria has asked them to recover form the scrappy (this was embarrassing) but not as embarrassing as trying to drive off in the Kia when neither of us could figure out how to start it (depress the clutch)- and then subsequently pulling up to get petrol, accruing a heathy queue and then realising we didn’t know how to open the petrol cap. Tip: when you first get a car read the manual.

I just want to think sunny thoughts do sunny things and dance the night away in a state of splendid euphoria, but while bits of me are in the process of unpredictable decline, sunny thoughts can prove illusive. The secret is to be busy or asleep or watch telly. So I do a combination of those three. TV starts for us at about 7:30. Maria insists it’s light hearted with no subtitles as she has to look down while she’s eating – huh? Just look up and spill it down your front I say – and do. (Important –  remember not to do a zoom meeting with your students with the remnants of last nights pasta adhered to the shirt, one might have slept in, presented in close up.) By 8:00 we are into subtitles or subtitles + gore + brutality and angst. By 9:00 we are both in a state of high anxiety after an hour sharing the suicidal Finish detectives battle with addiction and a brutish and insightless boss and the case of the dismembered girl found by her mother in a suitcase left at the school gates.  So we watch Inspector  Montalbano so that Maria can practice her Italian (Sicilian) I can become utterly confounded by the plot within the first three minutes and we can both relish the moments in true pre ‘me too’ style that Montalbano’s lieutenant helps solve the case by sleeping with the principal suspect who happens to be the spitting image of Gina Lollobrigida only with fewer clothes on. Then it’s bed. I sleep like a baby for 5 hours straight, assisted by the chemotherapy and beta blockers both of which seem to act like anaesthetics. I wake at 4:00, quite often more than ready to do something important. I love the early morning, it’s the most optimistic part of the day and I am quite often super energised. I actually relish a bath at 5:00 am listening to the world service or farming today with a mug of tea propped next to some experimental soap product likely to end up being used for purposes it is not designed to fulfil. I think particularly of the shampoo bar I use as shaving soap, definitely the best shaving soap ever and the conditioner I used as body wash (less successful, rather greasy and no lather to speak of). My morning energies are currently directed to endless marking (blah!) and to three potential conference opportunities to demonstrate my phone box art in order of increasing scariness – namely: Hull, Newcastle, Prague so I have been spending my spare hours reconfiguring ‘the red telephone box that talks a bit like me’ such that I can live video broadcast from it (thus not having to physically attend the conference) with all the audio complexity under my control from within the box rather than in my studio in the house. I have successfully managed this temporary transformation but have created a new challenge. Manual and mind dexterity is not my strong point – so imagine me cooped up inside this small, sometimes boiling hot space manipulating a mixer, laptop running complicated live broadcast software, a microphone, a webcam, a mobile phone, an iPad and a 1937 telephone dial and receiver. (Case in point – tested this at the weekend and attempted to make a 30 second video to include here – i left the video recording for and 1hr and 29 minutes filling my phones memory and then accidentally deleted the lot – this is indicative of my technical incompetence when i have to manage more than one device at once) I feel like RickWakeman in Journey to the Centre of the Earth, (one of the more disasterous 1970’s concept albums) wearing a magicians cape and 18 inch flares while wrestling with what looked to be the innards of Jodrell Bank only to produce the sounds  of incredibly over amplified 80’s video games slowed down a lot. Initially I was embarrassed by the dog walkers seeing this weirdo all wrapped up in technology talking to himself inside a phone box but now I am used to it and have been known to be in there in my dressing gown at 6:00 am, greeting a villager with a friendly wave with no explanation requested or provided.

I suspect I am becoming known as the local nutter. So that’s good news.

lost my way

I have lost my way writing for this blog. I don’t know who or what its for. It started out as therapy and then became a soapbox to make vacuous political gestures (regret, regret regret), then a family diary for showing off about my loved ones, (that probably just pisses people off) then a platform for me to show off about my projects, (that probably just bores people) then a platform for Tuffin to show off (does anyone but me care about my attempts at telling Tuffin’s story) and now I don’t know what it is. I haven’t lost interest, but I have lost my way.

It came about through cancer and that hasn’t gone away however its narrative potential has diminished as ‘cancer world’ has become more routine for me.

I go for tests, things go up and down, I take drugs, I get results, I go for more tests, I have trouble parking the car at the hospital it’s so busy and crowded I think I am going to be late, I start to panic, no reason they always wait, I leave my mask in the car, I go back for it, approach the hospital door that opens automatically the wrong way potentially smacking you in the face (maybe a way to generate more custom) report to a very tiny receptionist at the magnolia centre (why name the cancer centre it after a dreary emulsion paint – he he he) whose arms worry me, they are so thin I wonder if she is a patient seconded to reception, she’s always really nice though, I have to stand and wait in a queue, they only allow a limited number to sit inside, I look forward to sitting, I look forward to sitting in all settings (home, work, country walks, beaches etc), in I go, get weighed, have to take my shoes off this time, didn’t have to last time so didn’t wear my slip-ons, laces, what a drag, bending over what a drag, must not fart, bent at this angle compressing belly a distinct possibility, finally sit, next to bald gay guy with partner who looks really poorly, can barely walk, feel very sorry for him but secretly glad I am not that poorly, I smile, he doesn’t, I connect to eduroam super-fast university network that all academics can access in any university in the UK, York is a teaching hospital so it’s available all over the site, super fast browsing of E-bay to check out ‘Evans table lighters’ all too expensive cos of postage from US, French vintage telephones from France similarly out of range cos of VAT and postage from Europe which is about as expensive as that from the US (why?), oh Brexiteers what have you done – scuppered my ‘ancien telephone’ collecting hobby,  called by a nurse for blood test, usual amusing fiasco cos NAC (where the sample gets sent) requires phlebotomist to use ‘vacutainers’ which require a special attachment to avoid two jabs for patient (apparently not cool for phlebotomists reputation) that York NHS doesn’t use, my suggestion to just squirt the blood into the test tube is rejected and he threatens to go to try to find an attachment (it’s a sort of a ‘hoselok’ system)  I say don’t bother, just make two holes I don’t mind, nope he’s out the door down the corridor for what I know to be a fruitless search,  I loll about on the blood taking chair and watch the analyst do whatever she does with other peoples samples, she is Eastern European and I turn on the charm to demonstrate how much I love Eastern Europeans in case she feels unwelcome (thanks again Brexiteers), I subject her to a series of inane questions about the blood test process that I really don’t want an answer to but I am stuck like a record in a groove and cant move on till the phlebotomist returns empty handed and goes reluctantly to get the amazing delightful specialist nurse Helen (who I am actually in love with) who immediately assembles a chemistry set of ‘hoselok’ adapters, clicks then together and completely painlessly syphons off the necessary sample, back to EBay to glide through postcards of Eynsford (always the same ones on sale) and Yamaha Xg accessories  to discover I am sitting on a goldmine of 80’s technology that has come back into fashion), nothing doing in the ‘seaside memorabilia’ collection either, so reply to the slew of university emails inviting me to do staff development in areas I didn’t know needed developing, I still haven’t got to grips with decolonising the curriculum without falling no into the trap of cultural appropriation so I sign up for some much needed help, my consultant calls my name and in a fluster I drop my phone, my waterproof, my glasses and my dignity, gather them all up, stick them all under my arm and trying to look fit and feisty I scamper after him, I have no idea why I am possessed by a sense of urgency but I note it’s contagious, everyone in here does it, it’s as though the last consultant train is leaving the platform and you need to get on before the doors close, he is very chill, asks how I am, I say fine, he says good, any new symptoms, no, looks at my numbers pronounces them fine, suggests we carry on as we are, I agree, tells me to call if anything changes, and go wait in waiting room for pharmacist to bring drugs, meantime bald gay guy and partner have gone so I take a chair near where I know the pharmacist will appear thus avoiding embarrassing waving or shouting when she can’t locate me, offload my arm load of junk and try to reorganise myself, another panic when I can’t find mobile, much frantic patting of every pocket I own until I locate it wrapped in my waterproof under my arm, Jeez I am actually getting old and doddery and stupid, heart rate subsides in time for the pharmacist to deliver a plastic bag of goodies, she offers to explain them, I adopt my professional patient mode and decline, something I will regret once I am at home, say thanks to whatever nurses I pass on my way past the thin receptionist through the smacking door and after yet another ‘early onset’ ballet of pocket patting I pay a modest mortgage for 2 hours use of the multistorey and hit the road back home.

In case you missed the last line of Tuffin 22 it is … Oh yes I go to school now.

Tuffin 23

Our village has a famous river. It is famous because it is shallow so you can walk in it with wellingtons without getting wet socks at all and it has a track through it that lorries can drive through if they are too big for the bridge. So it isn’t really a river it is more of a road with a river running on top. Common people’s cars from Dartford or East Hill don’t use the bridge instead they break the rules and show off by going through the river very fast and making a big wave that fills your wellingtons and probably kills lots of fish. My dad always hopes they get stuck and water gets in the engine and ruins it. At weekends lots of common people’s children come to shout and splash in the river with just their pants on and throw stones and water at each other and at us. I hate them because they don’t know the rules. Luckily they have me to teach them. The bridge is only wide enough for one car small at a time. It is so narrow that it has places to hide at the top so that people don’t get squashed by the cars. I like to stand on guard stopping the small children from getting in hoping they will get killed. That way they will learn the rules like we have to at school. Rules for waiting or eating and playing and drinking from the water fountain and running and going to the toilet without wetting the walls or getting gravel in your knees or spilling ink and getting hit for not folding your arms, and writing in the lines and colouring in the lines and standing in lines with nowhere to hide to avoid being killed.

When I grow up, I won’t have to go to school, and I won’t have to hide.

Di’s statue is dreadful dross – Tuffin 20

I don’t know about you folk but I am unable to sleep, breathe, eat or function normally  since seeing the new Princess Diana statue. I have long ceased getting wound up about the big issues, survival of the planet, survival of the Labour Party, survival of me (that was all quite embarrassing in retrospect) but this atrocity has tipped me over the edge and I have to rant.

RANT: It is quite simply the worst piece of public art I have ever seen and I looked at loads for my Bridlington project.  The Artist should retire now and do something he is suited for like decorate Hallmark cards from the 1970’s, illustrate 1930’s children’s books or do those posters outside churches to come to a coffee morning. Sorry I do a disservice,  1930’s childrens book illustrators we’re working within the somewhat mawkish sentiments of the time and doing it rather well – this chap has dug up everything that is ghastly about the style – cute kids, mother/Madonna figure, maypole motif, horrible dress, someone else’s face (my vote is for David Bowie) and what seems to be a particularly finely wrought and enormous cowboy belt  to which he had added his own and ‘those brothers’ [I have nothing against them personally but I think we can now be confident that they don’t have an artistic bone in their bodies] particular brand of dreadful dreadful quasi religious kitsch – Sorry I do a disservice –while I despise all religiosity I love kitsch – this is beyond kitsch it is simply indescribable rubbish – lets take it down – melt it  – throw it in the canal and give a proper artist a chance to do something worthy of her reputation and tragic death – I thought the water garden thing was excellent – statues stink anyway – but really…….

Give it the commission to Tracy Emin and see what she comes up – at least it might look like a piece of 21st century art. The photo series below relates to her Cancer and is brilliant. I wish i had done something like it but I am not brave enough.

Ok, got that off my chest.

Busy planning/making a short documentary about the phone box. Learning about photography and film making as I go, so I have a very low expectations of quality. George is mentoring. I have been persuaded to rejoin the university research world and hopefully this will be part of my contributions. Other than uni teaching prep – [l guess the documentary project will contribute to that as well – additional skills and whatnot] – which is still quite intense, everything else has gone on back burner including Tuffin. I have 4 weeks holiday end July and August so we have plans but they are very very flexible to accommodate any last minute Nonna set backs but I want to use some of the time to complete the documentary and revitalise a few other projects which have fizzled out such as my CR-Apps but I also must get out and about… hmm (see below for bike news) .

Treatment goes well. Just started 4th cycle – hopeful for reduction in dose. Tastebuds not so bad this time – side effects generally less annoying. My wakefulness for three nights a week (this is night one) is no fun for Maria so I find a warm spot somewhere under the railway arches and kip there so as not to disturb her. Aside from the damp, the thieving and the violence it’s fine. I slip back in the morning to prepare her breakfast and tend my wounds

We have bought a second folding bike so we can go off on leisurely car jaunts and then take off free as birds – as long as the road is flat (no hills) and pothole free – airfields would be nice – very titchy wheels – oh and a convenient convenience, somewhere to get a snack – oh and a bus back to the car. Full size bikes are such a pain to stuff in car – likely to do back in loading the car never mind having a crash and falling in a ditch.

Maria continues to do things with apricots and exercise her new found passion for paper engineering. Separately I should say. She is incredibly neat and patient, qualities I don’t share, and she’s really good at it, if a tiny bit obsessive – says he.

Tuffin 20

Next to the station and to get to the wood is a narrow road. We are allowed to go down the road all the way to the donkey but no further as then you get to the shooting range where the army try out machine guns and bombs. I really want to go there but Dad says that even though it was in the war there still might be bombs lying about. I once heard a few bangs coming from there but no one was blown up or shot so I think it’s safe as long as you are careful and sensible. On the way to the donkey the road is so narrow that if a car comes you have to climb onto the bank to let it pass. The bank is full of snails and Jill is afraid of snails. They are really big ones the size of the crowns I have in my coin collection that the lady next door gave me before she died in bed. I sent her a thankyou letter but she must have been dead already because when dad went to make sure the house was ok it was still on the mat. On the way to the donkey we once found a mole in the middle of the road. I picked it up but it bit me so I dropped it. I pretended it didn’t hurt but it did and it bled a bit so I kept my hand in my pocket. After that we kicked it with our feet over to the bank to stop it getting run over but it didn’t move again so we left it alone. I think I killed it when I kicked it. The donkey is very muddy but we take carrots for it so it comes to the gate and puts its head over when it sees us coming. Everyone is afraid of it biting them except me. I like animals and they know that. Except moles perhaps but I think they are blind like the man at the station. The donkey has a really fat belly like Rosalind and thin legs like me. It’s not having a baby though as it has a big willy like Brian has when he is in the woods.

(There are lots of pattens in that bit – I must make a list later)

PS -The donkey’s best bit is it’s ears that are big, not sticky out like mine but sticky up. I wonder what donkeys hear like. If wonder if they can hear other donkeys making noises a long way off like submarines can. After all this one is all on its own and is probably lonely even with us there so it might like to hear another donkey even if it can’t see it.

When I grow up I want to explore the shooting range and find a bomb or bullets and I want my ears to be less sticky out.

Phew Nonna OK! & Tuffin 19

Long silence the result of some serious worries about Nonna now happily passed. Not Nonna – the worry!

Poor Nonna has been in hospital with a whole bunch of serious stuff. We were very very worried but after being pumped with antibiotics and believe it or not bicarb, she is back at home and happily prone in front of her Italian telly, happy as Larry. I won’t go into the details she can’t really give her permission (her understanding of the inter web is nowt, nulla) but suffice to say it was a life and death scenario and the latter seemed at first, to her doctors and to us to be a highly likely outcome. To say that because she’s approaching 90 (we had a birthday  party planned in just a week or two) and we should be prepared and possibly resigned to her never coming home was utter cobblers, we wanted her home and better, she is not an Eccles cake or a cannoli beyond its sell by date to be chucked away. Happily she agreed and despite dire predictions, much to our surprise and I think the doctors, her numbers returned to the  sustainable dreadful she has been maintaining for months now and she was discharged. She is beginning to be able to eat again without throwing up, can just about stagger with her walker to her essential services, has carers (who she really likes) help her dress morning and night, Maria makes her lunch, even I  managed to make a passable bowl of pastina when Maria was at work, manages a really complicated diet of new, changed and withdrawn drugs that makes mine look meagre and most importantly is so jolly that it makes us jolly. So now back to the status quo for however long such statistically improbable stability can be maintained – we can all breathe again and to some degree get on with our lives and think again about Tuffin and telephone box art that I just could not focus on while she was in such dire straits.

So here is latest followed by my own health update which is thankfully much less dramatic.

Tuffin 19

Andrew and I have a new game called hanging teddies. We both have teddies but because we are old now we don’t need them. Mine was given to me by my mean Nan, who my mum hates. She is not mean to me but she is mean to the family.  It has short fur and when you turn it upside it growls but it sounds like a cow. Andrew’s has long fur and is quite small and worn out. It doesn’t growl or anything. We attach string round their necks and dangle them out of my window. Because of the porch we can’t swing them very far without them bashing into the walls but we can balance them on the porch roof so it looks like they are going to do suicide  like the lady up the road did only she set herself on fire. The people walking up the road from the station saw us and smiled which is strange because I don’t think its funny. Andrew’s bear was weak and it head and body tore apart like it had had its throat cut. Andrew said the bear belonged to his mother and her mother so she would be cross. I knew about sewing from Mrs Friends class so I showed Andrew how to stitch the head back onto the body just like the boy at school had stitches on his thigh after he fell on some railings. I wanted to do the hanging teddies game again but Andrew said he was going home. Andrew is very weak like his Teddy.

When I grow up I want stitches.

My numbers are still improving so the dose of steroids has been reduced. I feel not too bad most of the time,  bit knackered and the food thing is annoying. Fizzle out in the evening but mornings are good and productive. I could definitely sustain this regime if it has to go on beyond September perhaps forever but I must admit I will miss experiencing  nice tastes. I didn’t think it was important, which it isn’t, but I do spend many a moment gazing longingly into the fridge trying to conjure up anything that doesn’t end up tasting like hoover left overs. I am still on pickled herring, tomato’s, apples, porridge with cream, plain pasta with butter, liquorice, tea and decaf coffee (thank goodness), fried bread, eggs and asparagus. Now looking at my list I don’t know why I am complaining but having been previously such a fan of most foods, provided I didn’t  have too cook them, such a specialised menu does seem a bit sad. I am hungry pretty much all the time which is also a new experience for me, I have lost weight, not a great deal, but my emaciated chicken legs are now even more hilarious when framed by summer wardrobe of three quarter shorts, short white socks, and my Clarks elasticated slip ons, (designed to make shoe putting effortless) -, sadly my belly persists resulting in over reliance on my non existent hips to support said shorts such that upon returning from the hospital a few days ago my shorts dropped to my ankles upon exiting the car much to Maria’s heartless amusement.

Oh one other important thing – Lisa and Arts gig scheduled for July has fallen foul of the Covid restrictions and is rescheduled for December 1st – Your tickets will still be valid – what a bummer though.

Confession time – pathetic!

I am taking a break from marking to share my relief and my patheticness!!!! and shame.

Ok I have been worried and stressed. This is why.

As you know i have been waiting to see if the current chemo recipe was having any effect – joy oh joy it is. i dont normally worry about my monthly blood results but this one was bugging me. Along with those tests I decided to take the routine test (offered to everyone over 60) for bowel cancer – perhaps i should have waited or just not bothered but anyway this involves sending a pooh sample off somewhere – not a pleasant process and waiting two weeks for the results. Unfortunately my brain decided to fixate on the following scenario

Test 1 – went to doctor with backache – sent to hospital – a week later told got amyloidosis
Test 2 – went to hospital with Amyloidosis – had some bone marrow removed – a week later told I had myeloma
Test 3 – went to hospital with palpitations – wore a heart monitor for a bit – a week later i was told I had atrial fibrillation

so it seemed perfectly reasonable that whenever i have a test its always positive. except for Covid – SO FAR

So i was busy planning for my colostomy bag management in Costa Coffee which only has one toilet – wondering if you could be treated for two cancers at the same time of if they had to wait there turn – wondering how on earth i would manage to consume any more drugs without turning into a walking chemical hazard – getting my affairs in order – ie contemplating releasing Maria from her marital vows, i thinks she quite likes a red face man who also grows tomatoes (that is until he completely failed to recognise her on a walk and was clearly dazed and confused to be regaled with tomato varieties when strolling along the daffy field path – oh how i meanly laughed) planning my requiem mass Verdi would be nice – but might be tough on the non existent church choir and the lady who plays the organ who has probably been by now recipient of her own requiem mass , couldn’t face a Sky Arts programme on Dantes Inferno which seemed like too close to home – blasphemy being a sort of line in the sand it seems for god – UNFORGIVABLE apparently – hubris i say – wondering if Vinnie would pine or hurl himself onto my lifeless but well preserved body (due to all the chemicals) and become a hieroglyph on my virtual burial chamber, wondering if there was a god after all and my well documented rudeness to all immortals was ultimately catching up with me – but i distracted myself over the weekend with some seriously obsessive preparing to be very ill or dead documentation you may peruse it at your leisure here –
and here

and i made this epic schematic – a clear reflection of my state of mind – where there is uncertainty and chaos bring order

(you can see where my priorities lie – how to keep my ‘Red Telephone Box the Talks a Bit Like Me’ going in perpetuity – never mind all that choosing a basket weave biologically washable coffin – or have you seen the latest you can be turned into liquid plant feed – Maria and Tomato man might find that useful)

And then behold this morning NEGATIVE!!!!! I am ridiculously relieved and really really surprised – a disease i haven’t got – just like 98 percent of the participants in this test – i am off the hook – well for two years anyway. I forgot to say that i bottled the last one two years ago – just couldn’t face it and not just because of the poo collecting element i was a COWARD. – that’s what i am confessing too – i am not brave i get scared and not always, in fact virtually never, for any sensible reason – i am just a big stupid HAPPY scary cat.

Tuffin 13

Jill’s Dad is called Sid. I like this name because it’s the shortest one I know – so easy to write on a list.

Sid’s job is to cut the grass and to clean the car. He is the first person in our road to have a green car. Mother says that is because he is some kind of artist and that artists like bright colours and she shows me some impression paintings done by Frenchmen. The pictures in the book are in black and white so I don’t really see the point but I don’t tell her because this is her most important hobby after cooking and cleaning. Sid is very quiet even when he is mowing or washing he never talks to anyone loudly. When I play at Jill’s he is usually inside in the dining room with his gun poking out the window waiting for the rats. I suppose this is why he is always so quiet. Jill says it’s something to do with the war but the war was over a longtime ago and I don’t think it had artists in it.

When I grow up I want a medal and a green car.

No I am not a cancer baldy!

Bright as a button at 2 am. 

My blog stopped sending out invites to my loyal readers. Even if you don’t read this would you be so kind as to tell me whether you get the e-mail. Ta. There may be back issues you missed if you are a Tuffin and like to read in chronological order.

Wednesday night is my sleepless night. It’s a bit “tiresome” if I have something important on Thursday morning but otherwise I don’t mind it. Not sure how it will work if I need to drive to Hull in the morning but I will address that when and if it is an issue. This chemo cycle has been less yucky than the last mainly because the back pain is much much less. I am not very mobile but I have managed two walks (hateful, hateful) and two bike rides (bearable). Out with the zimmer! Get quite tired after lunch (but then I always did), sense of taste is shot nearly all the time – I can eat with some pleasure – tomatoes, pickled herring, yogurt, coffee, porridge, chilli con carne, plain pasta or aglio olio. I am sure there are other things I have yet to discover but staples like bread, biscuits, chocolate, chips, Honey Nut Cornflakes and Angel Delight have all to varying degrees lost their appeal! Strangely bread is particularly revolting unless soaked in olive oil. Chocolate is almost gaggable still. I can’t say I am looking forward to a lifetime on pickled herring but I am going to pretend I am in one of my Scandi Noirs, a hunting lodge, a well-thumbed copy of Kierkegaard discarded next a fiord, the Northern lights pick out the shape of headless corpse floating in the outdoor spa while back at the station  the dysfunctional detective approaching retirement (me) finds solace in pickled herring and expresso.

Today I get my hair cut. I have decided to go short perhaps very short. The thought of revealing my flappers to the world gives me genuine angst so I may bottle it. If i proceed it would be the first time for about 50 years that the full extent of my flappers is revealed. I hope to keep my chopped off locks to decorate my death mask. That implies it will be a ‘live mask’ unless I leave instruction in my will and a YouTube tutorial for someone to do it. The other reason going suddenly short may be embarrassing, is that people may think it’s a halfway house chemo cut, sort of a attention seeking overture for going bald. Hmm… we’ll see.

Nonna is full of herself because the doctor who came to give her a cortisone injection in her knee,  praised her mental sharpness and general positive attitude, saying that none of his other 90 year olds were as active and positive as her and were still living alone looking after themselves. She is beaming with pride so we want him back for a twice yearly morale boost jab to accompany the knee jab.

Maria is making significant progress with her piano playing (enforced). There is much less banging on keys and swearing. It really sounds good at times. We need a new piano! It cannot be tuned high enough so the match between recordings and live playing is excruciating. She doesn’t like the relatively posh £400 ish digital keyboard we have here on loan from G because of the action, so if we get something it will be a trad second hand upright. G got a brilliant one in Norwich. Angela as it was yours will you be sad if we get rid? We will in a way. Anyone in the family want it? Transport will be very costly and won’t be worth it.

Class teaching is over for me so now I embark upon the marking journey. Everybody’s least favourite activity. Many of us now provide video feedback so that’s a lot less arduous and the students prefer it but however it’s a bit like day one working as a newly employed pot washer in a hotel kitchen and you discover the last one was fired for not bothering to wash any pots for a month. Piles and piles of stuff to be scraped, sorted, washed, dried and put back on the shelves and you have yet to pick up the first grubby little spoon caked in dried-on Black Forest gateau. I will pick up that spoon on Monday

I have an emerging plan for my next live broadcast from the telephone box. I believe I have some good ideas but I know from experience a good idea does not necessarily lead to a good outcome. So watch this space. There is no scheduled date – phew – so I will broadcast when it’s done – i got quite stressed by the last self imposed deadline.  I think I can build some more CR-APPS as I have found some more images. I have decided to address the copyright issue if it occurs. After all, if it does occur that means the idea has made an impact sufficient to stir up the copyright gate keepers and I can call that a success. As the CR-APPs are free I can’t imagine anyone will care. I need to market them and my knowledge of social media marketing is zilch. Avani do you want a commission? I was thinking of starting with a Tik Tok video?

The cats are all steady at the moment. Bobby is on the balcony as I write (time has passed since I started this post) scraping to come in. He arrives at first light and sits patiently waiting till we get up. Ohhhh to have a cats capacity to not register or worry about time passing. He just waits with no appreciation of it being for 4 seconds or 4 hours. When we let him in he is as unappreciative of prompt responses to scrapey paw or neglectful responses. One meow, one stretch, where’s my breakfast?

Emergency update. Vince has just raided the balcony, a rare but catastrophic event which usually results in Bobby emptying his bowels then and there. Vince had him trapped in a corner such that when I opened the door to rescue Bobby it necessitated him getting closer to Vince in order to access the open doorway. There was no way I was going out onto the balcony in my socks cos it was wet so I had to speak to Vince firmly and get him to back away – not a concept in his repertoire of moves – Vince tends to go forward at a terrify velocity when encountering the incontinent tabby. Anyway after much negotiation peace was restored and Vince’s fur which had exploded into his full 1980’s Dallas big ginger hair look retreated along with Vince. Meanwhile Mitch sat in his bath chair and spectated.


Tuffin 11

Swimming is good for my body says my mother.

I am more interested in the black pool.

We ride our bikes to see the pool. The water is black because the pool has been left inside the house for years and no one can get in. To see it we have to look through the windows and they are covered in moss from inside so there are only a few places left you can see in. One day you won’t be able to see in at all, so we make hay while it’s still possible. We all agree it’s brilliant, better even than the stagnant pond further back down the lane where if you throw in a stone in it throws up a slimy green tail, opens a black hole then closes it down again and disappears. The black pool still has chairs around it like people will come and put their watches and clothes on and that makes it feel more like they may be in the water it’s just we can’t see them because the moss is in the way. If people are in the water they must surely be in another worm hole because we can’t hear them and the water is very still. I wonder if this is the source of my worm hole.

Jill and Andrew want to go but I could stay all day. They prefer swimming. I might have to move them down my list and find someone who just likes looking to move to the top.

When I grow up I want to just look as well as invent.