Category Archives: Everything else

stuff happens

Doesn’t it just.

Yesterday Maria and I had three hours at the hospital going through all the procedures and risks associated with my new chemo regime. I don’t remember any of this from before so I guess they have tightened up on making sure every eventuality is covered including those disasters triggered  should I forget to close the toilet lid (I jest not). I guess the drugs are so toxic they can leap out of the toilet bowl and take out any passers by or spectators. Not a likely scenario but better safe than sorry I suppose. It was actually quite a fun experience and I could not help laughing at the registrars attempts at euphemistic language – I really don’t know what he meant by my private parts as there are at least two options neither of which seemed to fit the bill in terms of the potential maladies he was attempting to describe. Happily he had a sense of humour. Honestly ‘private parts’ should have long gone the way of ‘down there’ and ‘water works.’

This came after another long night accompanied by more  German cinematic angst. The choice on Mubi of Austrian films is quite limited but I am particularly interested in Vienna and Viennese culture at the moment so foolishly I indulged in an Ulrich Seidel film (advisory oh boy very very advisory) about elderly Austrian women who go to Africa to find ‘love.’ It turned out to be more than a bit pornographic with many enthusiastic  ‘wangers,’ let’s call them (private parts) amidst a good amount of wrinkly white fleshy bits littering the screen. I admit I got bored but as always with so many German/ Austrian art films it left a very distinctive vibe of hopeless and pathetic futility over a background of despair, [not jolly would be another way of putting it] which was exacerbated when after falling asleep (as I said it was quite a boring film) for an hour or so I awoke and attempted to turn on the bedside light.—  Zilch. I assumed we had had yet another power cut (we had had a couple cos of the storm) and slightly delirious I crawled around the house looking for a torch. After shuffling my way to the bathroom I absent mindedly flipped the light switch and -amazement -there was light. So there was no power cut just a bulb out on the bedside lamp. I felt a distinct German movie futility moment. Old man shuffles around das Haus, in the dark mistakenly believing there is a powercut. Perhaps I should make it.

Other news. While at the hospital I begged for stronger pain killers hinting that diazepam was my class A drug of choice but the registrar wouldn’t let me have them. I was persuaded that if I took more of the same old same old more regularly all would be well. I gave a very good natured response but I was sneering inside dreading another night of enthusiastic wangers but behold the medical professionals were right if you take loads and often the pain slips away and sleep slips in – blissful. A night of uninterrupted sleep was mine – I am happy.

Or I was.

After all the build up, Maria and I arrived at the hospital ready for the big event. I even brought my new satchel, yes I bought a 1970’s leather school satchel to hold all my German grammar books,  only to be told that a form authorising the budget for the treatment had not been signed so it had to be delayed a week. Honestly I couldn’t give a monkeys. Bet that surprises you. Now if I was till having back pain I might have kicked off (but actually that would have been pointless). Helen the nurse I have known for 10 years was very apologetic, but as I said to her , stuff happens and when it does you just don’t know what other events it might give rise to or what you might have avoided.  Perhaps I have dodged choking on a donut, perhaps someone unknown to me but in some convoluted way connected has avoided serendipitously something important, perhaps some deep space asteroid has minutely adjusted its course and in millions of years will avoid colliding with earth eliminating all references to the human race because my treatment was delayed by a week. What I am sure of  is that at any level beyond that occupied by Maria and I, it may or may not make a difference and we will never know. So after calling at Sainsbury’s and the post office we drove home (I admit a bit pathetically, tail between legs like) to be greeted cheerfully by Vinnie who is loving my sojourn in the ex Nonna downstairs electric tilting bed because he finally gets to sleep on a real bed in a warm room (see serendipity again) – he is excluded from upstairs, for which I believe he bears a grudge against Bobby who sleeps upstairs every day, and so if he can while he can (while my back still aches) he spends the entire day on Nonnas bed. I will join him

So Helen will check if the form has been signed on Friday and call me. Any further delays and she said they will ply me with steroids I asked if it could have them now, she thought I was joking, I wasn’t. Backs hurting a bit again maybe I spoke too soon. Damn it.

Tara C x

Here I am again

I am knocking around at 4:36. Could have been1:36 or just about any old hour:36 as the oramorph is not all it’s cracked up to be. I have been reassured by some gracious readers, that yes, this is the drug of 19th century gentlemenly addiction (I didn’t know, morphine, cocaine and opium are variations on the same poppy – is that right?) I could google it but it’s actually fun to get scholarly notes from Maria’s old friends who very kindly respond to my blogs meandering queries with percentages – but anyway not an incubus, fleshless grotesque or tiresomely long trippy poem has come my way – my back still hurts, not horribly but still just enough to prevent sleep so I am reassuring myself by writing this blog and fantasising about well stocked pharmacies full of delicious and let’s hope, effective drugs. – note to self 8:30 am call haematology department and beg.

Introspection is the default state at these hours and my latest navel gazing insights are as follows:

Perhaps because of my experience of this illness (you know the one that will never go away and I keep moaning about) my assumption now is that any illness, from an ingrowing toenail to the flu, a headache or an insect sting will never ever go away and will very likely be a death sentence. When it goes and I am not dead I am surprised. So I want to shout to the world that the wound I received while cleaning under the sink from some vicious flea or spider or ant that went colourfully ‘pussi’ cleared up without a trip to the doctor or A&E. As Aliash says repeatedly in ‘strictly’ –  ‘get in!’

Speaking of ‘strictly’ should Chris the blind comedian win even though he is not the best dancer? I kind of hope not. I think it would be a retrograde step for inclusiveness and what he has achieved so far is remarkable enough. He will win though because the public love him and are a sentimental lot. Fair enough I suppose. Strictly does try so hard to do inclusiveness properly and my old fashioned view is that it does a good job.

Next insight – along with the pleasure of venting stuff when I am feeling poorly (like a whale vents mucus through its blowhole, not water as we all suppose, hence well-intentioned rescuers can drown a whale by pouring water in its blowhole supposing it needs it) writing this blog is about asserting control. While my body is only partially in control because of illness, the little local world in which it resides seems reassuring in my control if I write about it. In the chemo sessions that begin next week I will relinquish control to the NHS but assert control by boring you all to death with a blow-to-blow account. I don’t write it for you to read it, I write for me to write it. (That’s not a typo btw.)

Next. Last time I was undergoing this sort of treatment I obsessively bought, fixed and installed old telephones and a whole load of lighters and other clobber. This time I am learning German for no good reason. I escape to another linguistic domain with joy, preoccupying myself with the minutiae of German grammar and reading easy readers with real relish. Most of them are truly dreadful, particularly watch out for those written by AI that are unreadable cobblers. The human authored ones are generally self published and concern such fascinating events as Ursula buying shoes in a department store in Munich and losing her keys. Even those by the big German educational publishers are overpriced, very short and awful. But Behold Angelika Bohn. If there was a Nobel Prize for German easy readers she would get it. They are imaginative without involving stuff I hate like wizards and castles, the characters are fun and a bit unpredictable, they are quite long but only cost two or tree quid, she repeats vocabulary throughout each title, so for example people get pushed on the shoulder repeatedly rather than once on the chest, once on the back etc. and the books are graded from A1 to C1 – I am at A2 which means you get to call yourself an advanced beginner. At the moment the story is about Sasha who is troubled by his surname which translates as woman’s shoe. (At least I hope that’s what it translates as, because if not I have missed the point) This is holding him back so he finds himself transported into the body of all the other people inn Germany with the same surname. Hmm strange idea, slightly desperate perhaps but plenty of chances to invent new characters, to experiment with identity and gender and explore some German cities.  It’s a bit like a Christmas Carol in so far as we are meant to learn to be better people from their dilemmas which is a bit annoying. These other people have also been troubled by the silly name but in most cases have overcome it or are so bad (robbers, liars and whatnot) they just don’t give a shit. It’s also targeted at young adults so the hip dialogue is not particularly applicable to my needs being more along the likes of ‘Where is the toilet? I need it urgently due to a dodgy prostate.” Rather than ‘let’s skinny dip in the lake, snort some coke and then checkout a gay bar.’Yes they do sound truly dreadful don’t they but in my particular state of mind and in these inhospitable hours Angelika Bohn gives a biblical degree of comfort.

Wow I slept!

It is now morning and I have spoken to haematology. Damm it! no class A drugs for me yet. Got to try a regime of regular doses rather than ‘as required.’ Last time I went onto regular doses I ended up in hospital with chronic constipation so this time Chris take the laxatives seriously they are not an optional extra when you fancy an over sweet orange flavoured fibrous cocktail.

Tara C  x

(Paul ‘Tara’ is Kentish cockney for ‘bye’) –  it’s not a nom de plume although at your suggestion I am thinking of adopting it. Tara C x

Opioids

Good very early morning readers.

It seems an age since I addressed you at 3:32 in the morning but here I am and no, it’s not the steroids, they don’t start until next week this is just yet another unfortunate event in the history of my ‘autumn of ill.’

As you know I have always hated autumn – well now I will associate it not only with going back to school but with enduring a string of health glitches that, were it not for my much admired good humour would PISS ME OFF me off almost as much as those years of hated and pointless hard labour. Yes, I am getting WELL FED UP and I suspect so are the health professionals tasked with keeping my motor running.

So I have strained a muscle in my upper back. Not a big deal you say, and so say I, but it has coincided with the break in my chemo regime as one drug kicks out and another kicks in. Accordingly, the cancer takes delight in reminding of its persistence by bothering me with lower back pain, much to be expected with myeloma, that’s what you get when it wakes up to smell the coffee but the combination of the two back pains slugging it out for ‘who can hurt most’, is sufficient to prevent me sleeping, not entirely but REALLY IRRITATINGLY.

Anyway after enduring a few nights of waking up, getting up, trying to read, going downstairs, making blistering hot water bottles to lie on (they give relief), persuading the cat to join me on the scalding settee and stop moaning about his need for a pre dawn snack, watching bleak German TV (with subtitles – the last one was about a young fisherman who falls in love with his teacher, they canoodle in a hut on a deserted Baltic island, she tries to call the whole thing of but (worried about losing her job) falls off another boat when out for a jolly , gets cremated, planned burial at sea, he follows the burialing boat in his fishing boat, overcome by grief segueyed by a sudden enthusiasm to join her in the afterlife so  jumps in the sea to canoodle with her anew).  In the morning I give the hospital a ring and tell them of my strife and hopefully persuade them to prescribe some stronger painkillers.

The same registrar that last time gave me mega antibios for my persistent cold has given me morphine (oramorph) for my back ache. I was expecting us to progress sedately up the list of possible analgiesigs ( sorry I really can’t be bothered to figure out how to spell at 2 in the morning) but it seems she is unafraid of the sledgehammer approach so here I am waiting for that nirvana effect that only a decent opioid can deliver – it is an opioid isn’t it – was it the one Sherlock Holmes got addicted to? Feeling quite 19th century and decadent – Tara c

Likely to be back on the steroids soon

So brace yourselves.

I vow not to:

  1. Buy stuff from EBay
  2. Put the world to rights
  3. Write bad poetry
  4. Adopt unfitting political viewpoints
  5. Believe I am cleverer than I am
  6. Blog at 2:00 am to read and regret at 8:00 am

Maria’s face fell and she started making up the spare bed when I announced it. Yep a new chemotherapy chapter is about to open.

I had got used to the self administered variety but this is a return to the hospital drip feed version. Once a week initially and then once every two weeks. How will I fit it into my hectic schedule full of daytime TV and sleeping? So glad I have retired. This is a treatment regime that hitherto York did not have a license for so I am very fortunate to get it. I am slightly jumping the gun because as yet my new consultant has to have a multidisciplinary team meeting, coo! And a discussion with the National Amyloidosis Centre. Aren’t I important. I have to say I am glad to be led again. My treatment was in danger of drifting a bit while York Hospital struggled to recruit haematology specialists but it seems things are getting sorted which is very reassuring.

Yesterday I knew something was afoot when during my consultation a specialist nurse came to join us. This usually means the session is gonna involve a procedure (painful or embarrassing) or she’s gonna have to dispense tissues and comfort. Neither were necessary, just the usual leaflet describing the abominations your body will produce when subjected to the vellum. Actually touch wood my body has yet to react adversely to any of the chemo recipes so far.

This has been two years in coming and lucky me that there continues to be new treatments available – god know what they cost – I assume it might be on an ascending scale, try the cheap stuff first (Lidl chemo) if that doesn’t work  try Tesco chemo  then Waitrose chemo and finally Fortnums chemo that comes in a gift basket delivered by private jet.

As ever I continue to be profoundly impressed by the care I get at York yesterday I bought a caffeinated macchiato from Costa by mistake, gave it to the nurses who made me a decaffeinated instant in exchange and brought it to me in the waiting area – I have not had instant for thirty years and I was immediately transported back to working at Bonaparte Records in Bromley drinking gallons of instant coffee so that by the end of the day I would feel so bloated that I needed milking.

Coincidentally my next door neighbour is about to embark on a change of chemo so we were hoping we might get appointments together. The procedure takes a few hours so having a mate alongside might make the time pass more quickly – mind you that is a perfect opportunity for German study to take place on which subject – I had my German lesson online with Sophia yesterday. Yet another disaster. As bad as I have had so far. I panic and get brain freeze. She has to wait while I painfully fail to dredge up any German sentence with a passing resemblance to the one I intend to say. Often falling upon an English one of such inordinate complexity that it sounds like I am trying to fox her translation skills or demonstrate that I can at least speak my mother tongue. Maria has the same problem – Say it as simply as you can – “I went to town” – not “ Yesterday we decided, after much consideration to take a much needed trip to town.” Basically I would get as far as “yesterday” and the rest would be a string of incomprehensible German sounds punctuated by ‘becketian’ pauses and Anglo Saxon curses.

It seems I am drawn to the blog when my health concerns move to the foreground. I know why and I have repeated it many times: It makes me feel better. So no doubt you will hear from me again at least until I get used to the new chemo regime or bored with it.

an urge

I suddenly feel the urge to blog. In the past the shorter darker days have sent me into a tailspin of gloom but since retirement I have so much more freedom to avoid gloom, I would feel guilty if I let myself go. What are you all doing about the news from the US? As soon as I realised what was happening, I deleted all my online news feeds and stopped listening to Radio 4 or watching TV news. If it comes on while I am changing channels I sing loudly shout nonsense and frantically find a channel with dull people up-cycling bedside tables. (Much repeated moan – Up cycling in my view should be called ruining – beautiful old telephones turned into horrible lamps …ughhhh) anyway back to the news from America – I just can’t face it anymore. I followed the election build up enthusiastically, hoping (expecting) that ‘Sane’ Kamala would win and ‘Mad’ Donald would lose, then disappear. Now I give up. The American people have made their decision, and I have made mine – to ignore them, him, it, the whole terrible thing the whole terrible lot of them. I am too weak and lazy to do anything positive to improve the world so I have decided to stop looking, listening, reading, to hibernate and just wait until someone tells me it’s worth waking up because all the greedy old men with humongous egos have been eaten up by a monster.

While we wait, we in York and have been ill. Not seriously but persistently and when I say my family I include one cat. Between us we have taken four lots of antibios and a ‘Boots’ load of paracetamol and ibuprofen. Fortunately Maria and I didn’t need clamping by the front paws onto the kitchen table while utilising long leather rose pruning gloves to have our medicine administered but Vince did. Awful, awful, awful – we needed Lisa badly. Poor Vince acquired over a week or so a lion face with a big swollen jaw and a lot of dribble and pus, squeeling with pain at one stage. We took him to the vet three times or was it four, and each time he pooed in his box and was very distressed. The vet said it could be something sinister (a popular euphemism for cancer) but could equally be a vermin bite or an abscess under a tooth. I started preparing his eulogy on the basis that cancer is very much in fashion in our house so I saw no reason why Vince wouldn’t want to be part of the trend. Hopefully he doesn’t as his face is no longer ‘lenny’ like (Tv lion from the 60’s) and his appetite is back and his temperament is jolly as ever. Bobby the only non ill member of the family has a smug look on his face that warrants a punch.

The last five weeks have probably been my least productive period for years. I have done next to nothing except feel poorly and slightly obsessively keep on learning German. My excuse is that we are in Bonn for Arthur’s birthday next year but I think I am competing secretly with Maria and George who are both making excellent progress with their Italian and I just don’t want to be left out. I have a super smart, too smart teacher, Sophia who massively overestimates my intelligence and retention power, bubbles with enthusiasm but cannot refrain from speaking so fast my brain starts to boil trying to keep up. I come away exhausted unable to remember the German for ‘Christopher Newell’ – it is Christopher Newell btw.

I continue to enter various writing competitions never to hear a thing back except variations on a theme of “nah.” Before getting ill I completed a short video made with my next door neighbour Geoff and his grand daughter. I will release it once they have seen it and approved. It hasn’t been possible to show them so far because we have been so infectious they don’t want to come in the house for a screening

On Thursday I will find out what the plan is for my treatment, as the current chemo has stopped working. Worked for three years which is excellent. Hoping it’s nothing too vicious but I will take whatever is thrown at me of course. I am on stronger beta blockers as well for my heart which are making me super lazy but then again I can’t unravel the effect of the cold on my particularly sedentary habits so we will see. I expect to be a lot bouncier soon and I must say I am looking forward to feeling like getting on with things again.

Hey one more thing.  Once you chuck away BBC news and the Guardian and TikTok you discover loads of worthy, arty videos on You Tube you have been promising to watch but just accruing in ‘watch later’ at the expense of a quick news fix. Bernstein’s series on music is brilliant. I have never realised before, that the reason I love Berg so much and don’t love Schoenberg at all is the incredibly emotional way he hints but doesn’t indulge in tonality. If you think of his music as tonal layered with atonality then it seems more accessible. Then again you need Bernsteins ear to hear it. Even the more accessible Berg is still quite often a right load of wrong notes for rather a long time but I think I understand it better now.

Classical guitar duo

Here is ‘The Messenger’ (by Arthur Newell) the last piece from the concert in All Saints Church in Appleton Roebuck on Friday. Played by Arthur Newell and Benedict Wood. It was an amazing evening with nearly 100 people attending. Very, very proud!!

Full EP (5 Tracks) available on Spotify – or let me know if you want a CD copy for £10.00 plus postage).

Finally done

I have been trying to create a video essay that would sum up my work on The Red Telephone Box That Talks a Bit Like Me. For some reason I need to do this. I think it’s about completion/closure/to have some tangible artifact to show off. My original intention was to accompany it with an academic journal article. I have also started that several times but I knew I had lost the plot when my last attempt began with me recalling the death of the family dog and my career in HMV records and how I was inspired by a scratched copy of a Karlheinz Stockhausen disc to embrace serendipity as part of my creative process – dear oh dear… pretentious or what! It’s been a right struggle and on and off has taken a year. I haven’t counted the number of failed attempts I have made but my poor family and friends have had to endure showings of all of them. The last one was 30 minutes long and very dull. This one is 13 minutes long and much better. It is to be my last attempt. It’s finally done (emboldened to remind self). I will do something else for a while and then try to write the article before the anniversary of my retirement from Hull in October. Then I feel it’s time to enjoy my phone box as was originally intended as a tiny private theatre instead of a obsessive, creative and academic mission.

The footage was all shot on an oldish mobile phone which I must say I am rather proud of as I was always trying to persuade my students (unsuccessfully) not bother with the fancy gear they could borrow from the uni which would inevitably go wrong or be so complicated they couldn’t figure it. Let me know what if anything emerges from the video that’s actually clear or better still, interesting. Although I have not the slightest intention of changing a thing even if nobody gets it. More than anything I need to stop trying to make this video now and forever.

Christopher Newell

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