Baa responded to my request for news with a poem celebrating my MRI.

l love it!

Maria saved her clubcard points to buy for Chris a scan

And thus, on the alloted day, they sought the Tesco van

They were shocked when they arrived there 

to find that access was by ladder 

But worse than that Chris realised 

He had a leaky bladder 

“There is no loo on board” they said 

Chris countered “I’m not proud.

I’ll do a wee on yonder tree”

They said “That’s not allowed!”

For forty minutes Chris lay still, not coughing, on his back 

(They really should have had a loo! Someone should get the sack!)

So if you ever need a scan

And likely need to widdle 

Just cast aside your clubcard points 

And head straight down to Lidl!

Barbara and Keith – I am ploughing ahead with the promised autobiographical blurt despite feeling quite uninspired. This experience has made it crystal clear that any thoughts I might have of writing a ‘My life in Art’ should be permanently shelved. When writing about myself I feel a responsibility to be interesting and of course most of my life I have not been very interesting so I end up cherry picking the few interesting bits a bit like instagram where you share just the glamorous locations or the attractive salads and it all starts to come across as contrived. Anyway contrived it will have to be – just two more chunks to go – this one is about my entrepreneurial years with yo-yo.uk.com and my break into academia (without really knowing that I had) and the next one- about being in academia – (I haven’t ever written about that I don’t think, so it might be quite fun) then I am done with reflection and can go back to Tuffin and my medical moans. They are still there by the way and bizarrely I have just been told by a nurse that I don’t have malignant spinal chord compression despite the fact that I have been carrying a card saying I do have it for 11 years. Isn’t illness a topsy turvy experience.

yo-yo.uk.com

Yo-yo.uk.com must have been one of the first businesses named after its website address. In some ways we were innovators. Website design had been something I had become interested in while working with Paul and Caro on Modern Music Theatre Troupe, we had won an ‘innovative site’ award from British Telecom. The site was not great but in those days doing anything that wasn’t just text with a photo was innovative. If I remember correctly we had some music playing along with the images – WOW! . Anyway this was the start of Chris Newell 2.0 the digital designer. I relied on Barry to be the visual designer, a skill I have never had. Jumping ahead this lack of confidence in my visual design skills, something I eventually ended up teaching at the university, was one of the reasons why teaching for me, was not as pleasing an experience as it could have been. I was usually just a step or two ahead of the level of some of the better students and far behind the best ones who could draw especially the Chinese exchange students. I thought I could offer them something alternative /non commercial, or rather I had to offer them alternative because I couldn’t offer them commercial which is what they wanted and needed and should have been given.

Back to yo-yo.uk.com. I like to think it was a success in all but one respect. I didn’t make enough money. Even with the opera gigs and some teaching we were skint in a perilously close to repossession, not bohemian and lovely way and we had two children and Maria was ill and couldn’t work. At yo-yo we had good clients and we produced good quality work with high ethical standards of fairness and honesty in other words we were crap at business and at one time worked out that we were paying ourselves 50p an hour. The problem was that we had to innovate on every job we did. Everything was new, everything had to be learnt from scratch and this meant hours and hours of unpaid study and research.

Fortunately this fed into my MSc and accounts for my success and it also subconsciously steered me toward Chris 3.00,  Chris the academic. My third but not final role for which I was only partly suited. Chris the opera director (good at the funny ones), Chris the entrepreneur (good at innovating but bad at making money) Chris the academic – well we will see…

Barry and I should be proud of what we achieved and I still feel bad that I took the academic job at Hull without properly consulting with him. My excuse is I didn’t really know what I was going for and I certainly didn’t think I would get it. It required a PhD and I had only just started mine but it was in a department that combined digital media, theatre and music so I should have figured that they would want me. Talk about a perfect fit. I knew that I could straddle all three of these worlds and that I could relate them to my PhD research in Computer Science at York which was about using human acting techniques and musical expression to enhance computer generated speech. So from their point of view I had the practical skills and commercial chops, I emphasised those in the interview because I knew their gatekeepers in recruitment would be wary at my lack of PhD and the only antidote in academic recruitment is to have commercial experience. They get so lambasted by government for not being business orientated enough that anyone who can run a successful vegetable stall in York market could be up for vice chancellor. Wo betide you if your research interests are in the Victorian pastoral novel you need to relate it to engineering solutions to resolve confusion in dementia sufferers. I jest not. I witnessed dozens of dedicated academics do similarly bizarre intellectual  backflips to make their research fulfil the ‘impact’ criteria.   

Back to the interview. I didn’t tell them how much I hated commerce, that I could not do commercial visual design without Barry and I earned 50p an hour from it. I had interdisciplinarity in spade loads, something they were very keen on in theory but in practise found impossible to deliver (that will be in my next post). In academia you have to be a specialist, in many ways the narrower your field the better. That way there are so few of you publishing in the area of blah blah that the only quality publication covering blah blah is full of your work and you are probably the editor anyway. Of course, all universities have been trying to produce research with more ‘impact’ which can mean getting more multidisciplinary, but academics are motivated by doing their thing, they don’t need others to do their thing with, nor do they want to do other peoples things.  I remember getting a call while working at the yo-yo office in York telling me I had got the job and shouting “yes!” Fist pumping as if I were in a football stadium. Barry had little idea what was going on, that he was witnessing a totally unexpected joyful abandonment by his official business partner of 5 years, unofficially closer to 10, who was giving him just a month to figure out how the business and he could survive without his digital designer. Happily yo-yo thrived for many years without me but it was not my finest hour and frankly he would have been justified in never speaking to me again. It’s a mark of him and his wife’s decency that they did speak to me and they are still dear friends. I can be a right selfish bastard.

That’s it for the yo-yo years. I remember bits of it with great affection and some pride but the bottom line was I was having to go to work by bike and unscrupulously scrounge the money for the mortgage from my Dad. Without the academic job I honestly don’t know what would have become of us. As it was Maria got a teaching job at around the same time and we found ourselves for the first time ever with jobs that finished before dark, where if you were ill you got paid, had pensions attached and very long holidays. The life of an academic at least at the start of the 21st century was bloody bliss.

Gerald

It was Christmas Eve. The shops were so busy Gerald started to feel sick. He told his mother but she said if he was sick then he wouldn’t get any presents because Santa hated boys who vomitted. Gerald held onto to it for as long as he could but when they arrived at the sweet stall he couldn’t stand the smell and he was sick all over the chocolate Santas.

His mother said that this was the limit and that Santa will never forgive him because he was sick on an effigy which was twice as bad. Gerald wanted to cry but he felt too sick.

On the way home on the tube he still felt sick, in fact he felt even sicker because they had to stand and the train was wobbling about and it was very hot. At Charing Cross Santa got onto the train and everyone cheered and laughed. But Gerald still had enough sick in him to fill Santas sack (which was full of presents) with some fresh sick. And he did. Everyone was disgusted, Gerald’s mother pretended he wasn’t hers and Santa said Fuck and Fuck Christmas and Fuck again many many times.

It was too late for Santa to make more presents so that night the children got presents covered in Gerald’s sick which made them feel sick until Christmas dinner and their mothers told them that if they were sick at Christmas dinner Santa would come and take their presents away but not give them new clean ones but leave them with nothing. So the children tried to keep the sick in but it was too much and in the end they were sick too.

And that’s why children are always sick at Christmas. It’s not from eating too many sweets it all because of Gerald.

I meant to publish this about a week ago. I told Barbara and Keith to expect it. Then I lost interest and then i got distracted. Then I sent you all a message about how I wanted your news, then I got lots of your news. Meanwhile I thought I would drop in some images, then I couldn’t be bothered . Then I could … below = Barber of Seville + The Magic Flute + Tales of Hoffmann + Cenerentola – All Mid Wales Opera productions

It starts here

Two dear friends from my opera directing past sent us a Christmas card. I checked that the e-mail address I had for them was still connected and to my delight they responded by saying yes and I responded by saying that I would fill them in on all that has come to pass since I arrived at my operatic apogee and started on my descent back to earth via yo-yo.uk.com, lots of ‘learning for life’, an academia job and illness. This may end up being a stroll through the last twenty five year of my life so, Barbara and Keith buckle up. Don’t worry it’s not an end of life review in order that the kids know for future autobiographies when dad flipped from a kind of cool theatre director type to very dull academic type and they determine never to make a similar mistake, but if it does come to serve that purpose ….The rest of you have probably heard it all before in previous self indulgent history posts so you can skip again TO THE END. That probably means you have been able to skip all but about four lines of this post – so RESULT.

I have had time to assess how interesting or otherwise this post might be and I have concluded that it isn’t super interesting. However I have started and I will finish but I will conclude this post as my operatic career hits the buffers rather than following through to the point when my entrepreneurial career also hits the buffers and then my academic one meets the same fate. They will come later. Let’s call this bit

Opera and why I went of it or perhaps it went off me

Barbara and Keith (Mid Wales Opera) represent in so many ways the best days of my opera directing career both artistically, (I did some good quality work) and emotionally, from the point of enjoyment, (I really had a great time doing it.)  Barbara and Keith used to laugh at my jokes and so did the Newtown audiences where all the shows premiered. I would say there is no better way to judge a decent production of a comic opera than getting a laugh in Newtown. Of course the singing matters more but that wasn’t my job.

I had stumbled into opera directing through pure bravado while at college. “Would anyone like to direct an Opera?” “Yes please” I said. I stuck at it, became somewhat better, never that good but by the time of Mid Wales Opera I think (like a middling quality wine) I wasn’t going to get any better however long I was ‘put down.’

Outside of MWO I was an ok director when dealing with comedy or fantasy but frankly hopeless with the tragic staples of the operatic repertoire. My attempts at Rigoletto, Carmen, Boheme and alike in all bring quite bad. My productions of the middle ground that Mozart occupied between comedy and drama were ok. I don’t really know why this was but I suspect in the end I didn’t really care as much about the consumptive victims so rudely killed off by 19th century Italian misogynist musical masters as I cared about the dadaist chair choreography one could rustle up for a rousing comedic finale where plot and all things other than vocal virtuosity have long since left the building. My lack of belief in the virtues of serious art continues to this day. Serious art seems easy when compared to funny art (if that were true of course I should have done it better). Anyway as my career progressed, my confidence faded and so my anxieties increased. I can remember vividly nights not being able to sleep despite having the most luxurious accommodation with B&K at the top of a beautiful weavers house in a village in Wales, fretting about the show and why it wasn’t working. I must have still been working as an AD at Glyndebourne (my chronology is all shot), I taught at Birmingham Conservatoire (did some fun and crazily ambitious things with Keith there) was assisting Sir Peter Hall at the National, helping to run a modern music theatre company with my dearest oldest friend Paul Barker and Caroline Sharman and generally riding quite high, but my nerve was shot  and it became inevitable I would have to bail out. The climax came in China when the show I was directing with the diva Ileana Cotrubas ran completely off the rails taking me with it and I ended up dragging a mattress around the corridors of a posh hotel in Macau trying to find a quiet place to rest my head after about a week with no sleep at all. I actually went pretty much crazy. That was after my previous hotel was evacuated in the middle of the night due to a fire, my costume designer left me to burn, and so many other absurd adventures and disasters that I keep thinking in that old man post career way, that I should write them down. Oh wait I am writing them down.

There is lots more opera career stuff I could recall but why?

So opera and I slowly parted company. It wasn’t overnight but I  remember buying a thumping big tome on Human Computer Interaction (still got it) and reading it in McDonalds next to the Birmingham Conservatoire thinking I would rather be doing something like this than directing an Opera. Computers became an extension of my imaginative space, (can’t think of a less pretentious way of putting that) but as ever, I had a persistent inclination to take things apart to figure out how they worked. (I used to drive to a guy in Northampton and buy 20 broken Olivetti computers which me and a fireman in the village would turn into 10 working ones. We loved doing it but never made any money because we ended up keeping any good ones to play with and giving away all the left overs. Actually I gave some rain soaked ones to the wife of the richest man in North Yorkshire who planned to dry them in the airing cupboard). Meanwhile my skills accrued but only ever in a glib way, thought sufficient to persuade some of the more gullible that I was some kind of extraordinary polymath, equally comfortable in both art and science. This is absolutely not true. I am very uncomfortable in science and marginally more comfortable in art but possibly quite good at making quite interesting connections between the two. In the 90’s this was sufficiently on trend to get me onto a Masters degree in interactive media at Huddersfield University despite some appalling gaps in my academic CV  eg. the absence of GCSE’s or A levels at a passing grade. I thrived and got a distinction and an MSc. My dearest beloved survived a bout of breast cancer which both enlivened us and scared us shitless. Meanwhile me and a dear friend Barry created a web design company in York and I set about keeping the wolf from the door by doing bits of opera directing including some said good work with Barbara and Keith and being an entrepreneur. Ha ha ha – you know what’s coming.

The End. Next episode soon. Although this is turning into a bit of a slog. So I may break it up into a fragmented blurt with commercial breaks songs and poems even a bit of ventriloquism.

Have seen the consultant re everything. He is a bit mystified by the pain and whatnot but does not seem too worried. Basically I have to be more generous with the painkillers to keep on top of it. We asked about getting a blue badge and he was so kind because as we were sitting in the waiting room he came and very quietly said – ‘they will automatically reject any application unless we say that you only have 6 months or less to live. Don’t worry that’s not the case but can we say it?’ We agreed to the fib. I would not have relished receiving my badge with covering letter. “Thank you for your application for a blue badge. We understand that you have less than six months to live, so no problem, here it is, enjoy.”

Nothing else has really changed, still waiting to find out what treatment options are open to me but the critical thing is that there are options so on we go.

I went for an MRI – turned out to be a horrible but retrospectively amusing experience, I suppose. Just to be clear nothing awful to report about results just the process.

Just reviewed this blog. This has been written in the daytime, when the I am a lot saner. Not half as good is it. Bit contrived to be funny. Ughhh. Actually quite horrible like from a second rate 1970’s book of humorous stories written by a washed up TV weather forecaster. [think my Dad owned that book) Never mind. I will leave it. Make sure it never gets included in the complete works.

So – pain and very poor mobility.

It was in Tescos car park. As we approached all I could see was a ladder sticking out of the back of an articulated lorry – and yes I really did think and report to Maria that I would be able to manage to climb up it. Needless to say they had a disabled lift and all the works. I also needed a wee. On that front they were less well prepared. They didn’t have one and the nearest was a good trek and my capabilities at that time amounted to about 20 strides of wheeless zimmer. I was assured that it would only take 20 minutes to do the scan but then the staff who had a slight ‘Kwikfit’ vibe checked my MOT on Spine booking and said 40 minutes. I began to sweat. Relief appeared to be at hand when I offered to take a quick leak in a bush, however due to the Tesco security cameras and the reluctance of the staff to license this anarchy this was out too. 40 minutes, I would have to call upon my SAS training and just push through. ‘Oh by the way’ I said in the waiting area accompanied I must say by some very pleasant amusing and trying to be helpful fitters – ‘I have a cough does that matter?’The verdict seemed at first to be don’t cough. The sweat began to stream. This was modified to  ‘don’t cough when the machine makes a noise and if you have to squeeze the buzzer so we can pause the recording and redo it.’ ‘The whole of it ?’ I said.  Imagining a never ending cycle of pauses and rescans. ‘No just that particular scan.’ I could say I was reassured by this but I was actually too far gone and complete panic was setting in. Off we set to walk to the scanner. I reached for my zimmer, ‘can’t take that, it will stick to the wall and we won’t be able to remove it.’Needless to say I had forgotten this as well. So like Fonteign and Nuriev me and fitter sort of danced toward the scanner. He must have been taught a fancy way of how to do it safely because he held both his hands in front of him clutched together high on his chest just like a ballet dancer and I hung onto those somewhat romantically as if readying myself to do a show stopping pirouette.  Next step lie down flat. Basically I had forgotten the degree to which my body currently resists that simple idea and given that my anxiety had induced a plank like rigidness from my top to my toes this was gonna hurt and it did.

So to summarise, needing a wee, not allowed to cough, painful back – I had 40 minutes to prove that I could survive interrogation by benign funny helpful but unknowingly cruel physical and psychological torturers. It wasn’t quite over. They tried to attach a face cover, initially quite patiently but then with more than a little kwik fit elbow grease. I let out an oww so they gave that up presumably leaving my face exposed to whatever Chernobyl lay in wait within the tube. They stuck in some silicon earplugs and then bizarrely some headphones on top of those which appeared to be broadcasting the voices of sirens luring me onto some rocks or previous patients plaintively keening to be allowed to go for a wee till I realised it was the gunk on my chest weasing and echoing back down the line.

The system tells you how long each scan will take. I think the longest is 5 minutes the rest are three or four so I paced myself and held on until the gaps and then coughed. As each scan passed I told myself that at least I would not have to repeat that one and by the end of the 40 minutes I was reasonably calm almost ready for another go. NOT.

It was over. I was jovial and they said I had done really well. I felt like a child. It was nice. I didn’t need a wee anymore.

Finally, can I say I know people who put up with so much more pain and fear than I do but I have been told not to be so self effacing and modest so for me this little victory was actually quite big so I feel quite proud. Bravo me.

Recently It was suggested I write within a day, three short examples of Flash Fiction for Christmas. I think it was on Christmas Eve. Anyway, in that same spirit of less self effacement I think they turned out pretty good so I am going to post them one at a time. I wrote about them before in this blog but that bit vanished when the app crashed and stopped publishing. Last time I explained them and apologised on behalf of them. This time I won’t.j

The skateboard park

Santa was already there despite it being Christmas Eve he had been there all day, just hanging out. He didn’t need to skateboard as he had a sleigh that was faster and could carry passengers and presents. So he just sat on the concrete and watched the children play.

The children were troubled. They had been told to watch out for men, on their own hanging about watching, so they called the police who were too busy and said that Santa was well-loved and they didn’t need to worry.

One of the brave girls asked Santa what he was doing and said he should be out doing his deliveries. He agreed but didn’t budge. So the girl went back to doing some quite showy offy tricks. Santa clapped obligingly which warmed everybody’s heart and made the atmosphere much better and jolly as you would expect.

Eventually Santa stood up tightened his belt and Rudolf knew him well enough to know that this meant it was time to go. So off they both went. The other children went home to leave mince pies and sherry out for Santa even though it would have been easier to give it to him before he left. Only the brave little girl stayed to show off some more.

To me.

I have been blogging away in the night while under the influence of steroids but my app stopped publishing, so now I have lots of material in a bit of a mess. I have been advised by the beloved one that brevity is a virtue and that I do go on a bit, so rather than it wait until it’s in the Bodleian I will publish it in chunks that may have succumbed to chronological hysteria.

I suppose the headline news is I am currently pretty incapacitated, bit like, but not as bad as 10 years ago. Pain is well under control and frankly that’s really the only thing that can break my spirit so I am perfectly cheerful. There is always an absurdist element that overwhelms the orderly progress of serious medical care and I suppose I relish those moments at least in retrospect. I will relay those in due course. Hopefully on Thursday there will be a bit more strategy and a bit less bumbling about but you never know. Meantime I read, I write, I stagger with next doors zimmer – poor Jenny 78 can’t shower till I get my new one – delayed by Amazon (we gave my last one away – hmmm over optimistic), I eat a lot (that’s steroids again) , I learn German, watch disturbing German movies with subtitles, watch you tube videos on film theory and demand 24 hour care from Maria. The latter is a source of guilt but insufficient to prevent me from demanding it anyway. All in all I am a slothful, fat, drug addict. Great company – do drop by!

I don’t acknowledge New Years I don’t care. It’s nothing personal. Don’t be offended.

‘So Chris if it’s not new year, when do you feel an urge sufficient to put finger to iPad and write a blog post.’

(Unusually I have reviewed this blog post) You can skip the next two paragraphs (what a load of drivel) the proper post starts with ‘Two dear friends from my opera directing past sent us a Christmas card.’

But then on reviewing it again I have decided to save that stuff until another post.

My oft repeated response has been, “when I need to vent something and like an over inflated balloon I will explode if I don’t” – but that’s not entirely true. A certain combination of factors must also be present. If I am too over inflated, – let’s call it very worried, then the distance I need from the emotional hot spot, – let’s call it oh my god someone is going to die, I am going to die, my favourite cat it going to die or that old favourite Maria, has been, will be, wants to be abducted by aliens,  is not sufficient to elicit the ‘write a blog you will feel better response.’ So in this case dear reader, no news can mean bad news (don’t forget I am always the dear reader I write this for)  but let’s not panic, no news can at the best of times mean  good news, because there is no hot spot emotional or otherwise to require an evaluation of distance to be triggered  hence no blog post, blessed relief for all. Got it. I am not sure I have – and yes I am in steroid, pain killer, and double dose chemo heaven, that special place where just about any combination of words posited sufficiently early in the morning seem like drops of the profoundest wisdom until you read them a few months later and they reveal their true value – None nothing nichts. So let’s carry on writing nowt.

One of the things that this disease can trigger is liver/kidney problems. If you have blood in your wee or trouble going or not going to the toilet then ring the hospital. Anyway a day or two ago I had none of those issues, but my hands did turnbright yellow. Now one of the symptoms of serious illness is hypercondria so my brain leapt to ‘yellow skin = internal organ failure probably liver.” It did not leap to ‘you have just been handling a brand new pot of Curcumin tablets, derived from that yellowish of Indian cuisine herbal delicacies turmeric.” By the time it had, I had (1) opened the curtains to check if the sun was rising and had had somehow miraculously imparted its hue through the curtains onto my hands, (2) checked whether my reading light bulb was failing and spreading yellow rather than white light into the bedroom and (3) scrutinised my face with my iPhone camera searching for tell tale signs of ‘sunflower syndrome’ where selected boldly extremities go the colour of a well known Van Gogh flower arrangement. Yep it was one those drug induced moments of hallucinatory fear that I had quite forgotten I would experience in irrational waves until my brain remembers that the kind of poison currently being administered is the good kind and stops scaring the pants off me.

Two dear friends from my opera directing past sent us a Christmas card. I checked that the e-mail address I had for them was still connected and to my delight…………….

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

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 19^th 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

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

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.