M’s piping foot

piping foot reverse

These fascinating pictures are of a piping foot M purchased for her sewing machine.  I hope that those of you that know me well acknowledge that I am not a ‘bread head’ – owning or retaining money has never been a particularly high priority in my life – I have been lucky enough not to have to care much about it. So it came as something of a surprise, when for just about the first time ever I found myself quite outraged by the price of something. The item you see on this page, which is little more than a glorified paperclip  cost £15.00! That ranks second only to what Volvo charge for the software download to get a stuck CD out of your CD player which I believe is £350.00 about a third of what I paid for the car.

piping foot

 

I can only conclude from these two anecdotes that money in terms of its relation to the utility or value of goods has ceased to have any meaning whatsoever.  Like God money has become a myth, something that some of us have to believe in in order to retain a sense of worth. Isn’t it about time that prices  reconnected with even a basic notion of value to life. I am far from sure of what the economic implications of this would be but I know what I would like them to be. The greedy people (this includes me) who insist on scamming the rest of the planet and chucking money at people who already have lots and aren’t inclined to share it, just so that they can install another outdoor hot tub or to own a piping foot should jolly well pay more tax so those people who need a loaf of bread or antibiotics can get them. Surely that isn’t a controversial idea? But I can already hear the tiresome rejoinders about Capitalism being the only way of providing the wealth necessary to bring about this sort of change. I am afraid I just don’t believe that we have tried very hard to find other ways – after all once you are in your outdoor hot tub it’s hard to get out again, he says shamelessly but metaphorically luxuriating in one.

Herewith our global track record courtesy of the UN

  • 925 million people do not have enough to eat – more than the combined populations of USA, Canada and the European Union;
    (Source: FAO news release, 14 September 2010)
  • Nearly half the world’s population, 2.8 billion people, survive on less than $2 a day.
  • About 20 percent of the world’s population, 1.2 billion people, live on less than $1 a day.
  • Nearly 1 billion people are illiterate and 1 billion do not have safe water.
  • 98 percent of the world’s hungry live in developing countries;

piping foot front

A £15.00 piping foot

 

Here are pictures of me before and after treatment – arghh!

Before diagnosis and smug

Newell _image_with _hat_cropped

Before treatment 2 months ago and pissed off

me_ill

Today in mid treatment 30/08/2014

me feeling better

The only qualifiers I can add are  –

Forgive the hat in the first picture from about 2 years ago

The second picture was taken for my blue badge and I was told by the machine not to smile

In the third picture I smiled deliberately to look cheerful (which I am) and I hope you agree chemo suits me

 

Obsessing about God and Professor Hawking’s Voice

3:43 am.

Wakened by my phone vibrating. I thought silent mode meant silent! Seems that the Amazon fairies work late and needed to let me know about ‘unbeatable offers on returned goods’ – ashamed to say I had a quick look – some good stuff – a lap-top with scratched case for £100.

My theme for this posting is obsessions. I have always admitted, perhaps prided myself in having an obsessive personality. I am that classic male that buys the book, the T-shirt, the magazine subscription , the membership etc etc. Not so much these days but certainly when I was younger. Most of these obsessions turned out to be pretty much a waste of time. Having collected all the necessary ingredients to bake a magnificent cake, I would fail to ever make, even a tawdry cake. My bass playing aspirations have floundered ( although I did purchase a new wall fitting for one of my basses – so that’s a step forward!), my cross trainer gathers dust, the tandem gets an occasional outing, my telescope is in the loft. I suppose just two turned out to be worthwhile; opera and computers both of which at least gave me means to earn a living. It now turns out that compared to many obsessives I am a real lightweight and 3 wonderful examples are to be found on the BBC News website. A watchmaker who makes watches from scratch – from the raw materials http://www.bbc.co.uk/news/magazine-24211691

An artist using a typewriter to create non abstract images http://www.bbc.co.uk/news/magazine-24760538

and another artist who has created a corner shop in which all the goods are felt facsimiles of real things, like bags of oven chips, mars bars etc. http://www.bbc.co.uk/news/magazine-28609443

So be warned or perhaps relieved I am not nearly as committed as any of them and my latest list of obsessions includes this blog which could well go the way of the cross trainer, telescope and tandem. I am already warming to another project which could easily drive this one into the section marked ‘to do later’ and as we all no that really means ‘never.’ Meanwhile I am very encouraged by several friends and colleagues who have contacted me to congratulate me on my new public atheist stance. It seems that being ‘in the valley of the shadow of death’ does liberate one from concerns over seeming silly or embarrassing – and I am pleased to be seen as leading a modest and very local charge for coming out as militantly atheist, just so long as I don’t hurt the feelings of anyone I love.

Boy I could probably do so and occasionally I am tempted. It’s the stuff out there! The rampant smugness and hypocrisy of the religious right, the schemes, scams and abuse proliferated, in the name of some sort of bogus mythology. It is inexcusable and yes I am going to say it we should fight it – not the people who believe it ( we can’t go round bashing other lovely human beings) but the bullying philosophy that underpins it should be challenged fearlessly but fairly. My potential decent into bigotry is a worry, but you have all promised to let me know.

So mouthing off has connected me with several people who I would have had no idea shared my views. Hurrah for that and for them. I am urging them to post.

The silent majority, I will assume has long since abandoned reading this blog – good for them, I would have done so for sure, or disagree with me but don’t want to pick on me cos I am ill – wimps I say to you folk, or my profoundest hope – JUST DON’T CARE – in my view one of the supreme achievements of human-kind and one we should all aspire to – a state of “I could not give a shit” is indeed a blessed state. ICNGAS – make what puns you can from the acronym. ‘I Chris Newell Gas’ (too much), just popped into my head.

What I have found most reassuring though is that other creative people can become so obsessed by such narrow topics, constrained canvases or challenging tools. In my case my obsession is with the creative potential of a specific 1986 bit of technology, long since superseded by more practical, faster, lighter devices, but this one happens to sound like Stephen Hawking – this has, for the last 3 years been my expressive medium and I was beginning to seriously worry that it was time to move on. Now I feel reassured that this will probably see me out, and rest assured by that I mean the next 30 years. The thing is it has some many of the ingredients I love. It is big like an old radio, it needs constant fixing, it’s noisy and contains bits that should move and get stuck, it needs umpteen other bits to make it do anything interesting! It impossible to find instructions on how to make it go (I have them now thanks) and unlike an IPod it looks like shit. But that said it is the only speech synthesis system I have come across in which a relatively crap programmer can create new voices, change the prosody, change the virtual head size, the breathiness, the gender, the age of the speaker even get it to sing +++. So to Dennis Klatt (the originator of the system) – I, an arty-farty amateur programmer and aspiring sound artist, bow down and worship your genius – it’s an extraordinary instrument you created. It gives me endless pleasure and all for $500 on Ebay (I have two now plus the original terminal to operate it (just for collecting completeness) so make that $1000).

I am very eager to reinforce the idea that anyone contemplating contributing to the blog is not expected to write essays, to check their work for typos, to express themselves clearly or any of that tiresome nonsense the teachers, that includes me, may mistakenly think matters. Knock out a blurt in five minutes and press submit please.

That’s it – bored now.

2:30 am ramble

Yet another 2:30 am start.

If a link to this arrived as an e-mail alert would you be kind enough to email me back so that I know it’s working. Ta.

Even the BBC News has trouble keeping up with me – looks like yesterday’s stories to me. M fast asleep next to me. A finally in from the pub quiz – wonder if he won his much desired meat platter – last time it was a bag of potatoes – wow! Worse than a blankety blank pen. Cats noisy below – probably dismembering a rabbit on the carpet. They managed 7 dead or nearly dead mice in one shift recently – a record – but we have also had many rabbits, birds, shrews, moles (never eaten must not be tasty) a bat – alive – A ran way to his room – and a squirrel, sadly only it’s tail. They operate as a team which makes them more deadly. They have been seen collaborating on the tricky task of getting a rabbit (still alive) through the cat door. One is on side pushing while the other pulls from the other side. Said rabbit ended up bottom up ( just bottom and tail, rest consumed) in the middle of the carpet giving the impression that it was digging its way to Australia to escape.

So far this morning/night I have entertained myself by finally figuring out how to move files between my home network my Ipad and my Iphone – very nerdy stuff but discovered an excellent application called ‘File Browser’ that can do the job. Added some opinionated stuff about the Ebola Missionary to the blog. Hopefully managed to initiate the alert system properly this time so that you all get an alert when I post. Been trying to figure this for some time – should be very straight forward but because of conflicting plugins turned into a bit of a prolonged task. My last task was to track my amazon prime package – an excellent service it even tells you the name of the driver – it’s always Shaun but there are three Shauns – something of a statistical blip. Believe or not all that excitement has taken 3 hours so now the birds are tweeting and I can get up and make myself a cup of tea- somehow I cannot bring myself to do that before dawn.

More treatment at the hospital yesterday. A glorious muddle of checking and re checking my bloods. I admitted I was very confused about when they had to do the checks – every time – every other time – once per cycle to which a nurse replied “so are we.” I find that sort of honesty and good humour such a delight, so much better than the guarded ‘ we might get sued’ response rampant in so many organisations.

Any way my bloods are good. Never sure what that means except it triggers the treatment to continue but it’s got to be better than bad blood. I continue to feel pretty good. A few aches and pains tend to emerge when I get a bit more active but I have a spring in my stride and indeed in my heart and have lots to look forward to. I even feather dusted my study yesterday to get rid of some of cat hair. They do like to sleep on computers – I worry that that may led to a self combusting cat someday but I guess they will relocate before that happens.

I am on with J’s challenging modernist Portuguese literature and enjoying it. That means I have 8 books on the go not including techie stuff. I think it’s the drugs.

Anyway tea time.

Thank God that the Ebola missionary has recovered!

Cancer without God

Cancer without God

I am very pleased that the missionary who received experimental treatment for Ebola has recovered. However in his TV interview, he chose to thank God first without thanking the medical staff who had undertaken the pioneering science that led to his recovery. It seems highly probable that, like so many others who do not have access to the experimental treatments, left in God’s hands he would have died. This gesture strikes me as an insult to all those dedicated medical professionals who undertook his care.

Why should God take the credit for fixing something he had clearly neither the desire nor the ability to fix? Or does he just fix American missionaries preferring to ignore the ordinary people living in those countries stricken with the disease?

Oh Come on!

Verbal reviews of this blog

I was informed of the following verbal review of this blog from a dear friend. I thought it was worth  circulating.

“CRAP. Why can’t we just go round and see him.”

Kevin Jones a  friend and colleague of mine in New York kindly sent me this and has allowed me to post the relevant parts of  it.  You can follow his new opera with synthetic voices here – http://www.yourcallopera.com/

Chris,
Just came across your blog ‘Cancer Without God.’ It is delightful and, being a fellow cancer sojourner and fellow heathen, struck a chord. I am so glad to hear that you’re doing better. Sounds as though we’re both managing this fucking disease. Like yours, mine is controllable but not curable. As to giving thanks – I thank my oncologist, my friends, the pharmaceutical industry, whisky distillers, the tech crew at Tete-a-Tete and countless others. But god? Please. Living in America where a 9 year old girl wielding an Uzzi recently shot and killed her shooting instructor. (That’s right – 9 year old girl learning to shoot an Uzzi), and where vast swathes of the population are rabid christian lunatics with an unswerving devotion to the ‘right’ of 9 year old girls to bear automatic weapons, I do not thank god. I live in fear of those that do. Perhaps this is why I try and spend as much time as possible elsewhere.

I have just finished 6 months of chemo – weekly 1 hour long injections plus all the other things they give you to prevent the chemo from killing you as it heals you, plus the daily fist full of pills. The bit about blood tests sounded familiar. With all the needles that have been stuck in me recently I have the arms of a junkie. All told it hasn’t been so bad though. Enough of my hair fell out that I got it buzzed, fingernails fell out, sense of taste completely gone. All very annoying but bearable. These will all be coming back in the next few months. On the plus side I have been getting steroids, both injected and orally. I love this drug. I have never had so much energy. I’ve actually asked my oncologist if it wouldn’t be better if I stayed on the steroids after chemo ends. She said, firmly, ‘No.’ But I can see why athletes get hooked on this stuff. Don’t know how I would have gotten through Tete-a-Tete without it.

Dawkins is a nit and I am content. Strange.

First rant.

Despite being in broad agreement with Dawkins on many issues I really feel he is loosing his mind with this comment http://www.bbc.co.uk/news/blogs-ouch-28879659 and undermining some of his more thoughtful interventions. This comment is outrageous, discriminatory and plain wrong.

On with the posting.

I will not keep referring to the various provisos I have been keen to emphasize in previous posts. I henceforth assume that you have read the old stuff and have absorbed the notions of:

• My fortunate position regarding love and support
• My enthusiastic uptake of pills that make you feel happy
• My desire not to hurt anyone’s feelings

So now I can say what I came here to say.

I am strangely content and happy.

There is no doubt in my mind that since having cancer a lot of my old anxieties have evaporated (good riddance). I know it’s a terrible cliché to suggest that illness gives you a new perspective on the things that really matter and I am not actually suggesting that. I have been spending an inordinate amount of time thinking about the things that don’t matter a jot and deriving great pleasure from them. We now have an aerial on the house that means I can hear Radio 3 in stereo for the first time ever. I have glued backed together our TV Dinner trays – neglected for years. In fact gluing stuff has become a positive highlight of my day. If I happen upon some neglected, handleless cup requiring a dab of Evostick I feel a wave of joy anticipating the 20 minutes of tweaking, elastic banding and scraping off the excess glue. I guess that activity is a bit like picking at scabs on your knees when you were six and in short trousers. Most satisfying! I have an exceptionally tidy study and now that I am so much more mobile my ‘nest maintenance’ is beginning to spread around the house. I have tidied G&A’s room, gathering up their books, putting them on shelves, not so anal as to be in any order but still on shelves as against in piles. Poor A has been subject to a radical reorganisation of his scores and all his drum hardware. He has taken numerous and unenthusiastic trips to our spider ridden loft to relocate redundant bits and pieces. M soldiers on womanfully making loose covers for a settee someone gave us, supported by two cats who insist on lying on the material as she machines or fighting with the tape measure.

So all in all the family focus and my focus in particular oscillates between – let’s call it “life and death concerns” and trivia.

Perhaps on my part it is some hidden desire to put things in order – but I reject that notion too. If anything I am creating less order by starting loads of projects, large and small, all at the same time. DIY, tidying, writing, practising, programming, finding fountains, car boot sales, web servers and of course this blog.

What is more interesting and more surprising is the degree to which I feel quite content with my lot. This is not really my usual state – I am not an unhappy person ever – well hardly ever – In fact I would probably be thought of as quite jolly, but I have been somewhat possessed by a few demons – mainly I think satisfying ambition and status – can’t honestly say for sure- but I have tended to lock myself away with an intense project and ignore everybody else. Perhaps I am doing less of that now – again it is for others to say – either way this dose of a fairly aggressive potential for misery has made me HAPPIER!!

I can’t believe this is just the one drug I take (I am off the sedating pain-killers). I gather it’s a tiny dose of a very mild anxiety reducer – supposed to take the edge off those ‘black dogs’ I referred to umpteen posts ago, not designed to transport you to Nirvana. Of course maybe I am just a happy druggy.

No I am going to say confidently that a life threatening disease arising in the circumstances I am in (see provisos above) is just not that bad. Perhaps it is the years of practise devoted to coming to terms with the fact that life can flip between great and shit randomly. The guy I met in The oncology centre from the village a week or so ago is dead now – not from the cancer, something else. I liked him a lot. He held deep Christian beliefs.

Off course I should not forget what it’s like for those around me, that love me, that would be incredibly thoughtless. Still I have a feeling that knowing that the main protagonist in the drama you have found yourself unwillingly participating in, is (so far at least) fairly jolly, nee content, can’t be a bad thing. Can it? Mmmm or can it???

Drug taking and tinkering with technology

image

In this short, sensible post I will tell you all what it feels like to up your daily weekly intake of drugs, 14 in my case – blood pressure and statins, to 72 -80 plus 2 injections. I will also update you on my work.

80 odd drugs – Not too bad at all. Which is surprising give the toxicity of some.

My cycle starts on a Tuesday when I go to the haematology clinic to have my bloods checked (always plural for some reason) to see if I can continue the treatment or if I need more time for the blood to recover whatever it needs to recover. M and I hang around for about an hour and a half for the all clear and then I go to the room where a load of other bewigged, bald, mainly behaired actually, men and women get their dose. Many of them sit under what looks like hair dryers but are in fact head coolers supposed to minimise hair loss. After the stomach injection, I am given my bag of meds for the cycle and sent home. At home in the early evening I take ten tablets (these are the actual chemo drugs) they can have quite a number of side-effects but I experience virtually none. I could take the steroids but was advised to wait until the morning otherwise I would be awake all night. At night I take my two blood pressure drugs and an anti-viral drug to stop something or other. In the morning I take 10 steroids, another antiviral, an anti-anxiety, calcium, something to help my stomach digest, laxatives (to taste) and pain killers (to taste) but I have been able to stop these – the effects are subtle but somewhat cumulative.

  • Tuesday – feel fine
  • Wednesday – still feel fine but maybe a little less so- this is combatted by the steroids. A few hitherto hidden pains pop up but nothing troublesome
  • Thursday- May feel a tiny bit shaky – like very, very mild flue – but again nothing troublesome and will be eating obsessively.
  • Friday next injection (and sometimes 30 mins administering an intravenous drug) no change really – continue to feel a little bit shaky.
  • Saturday – still on steroids so shaky symptoms not of concern.
  • Sunday depending on whether I have had the intravenous drug can be tired or on the first cycle quite poorly
  • Monday generally starting to feel better
  • Tuesday next cycle starts.

My pattern for my weeks off is different. I still have the drugs on the Tuesday but no steroids so feel a wee bit rough on Wednesday. From then on I gradually emerge until by the weekend I start to feel great. This continues to the start of the next cycle on Tuesday That starts with a review with my consultant.

All in all really not at all unpleasant. No hair loss, sickness or any of the nasty things some people get. Energy a bit low and walking any distance a burden cos of back – but nowhere near as bad as I anticipated despite being on quite a heavyweight regime.

Getting quite a bit of creative and technical work done. I have taken my time optimising the set up for mixing the soundscape for my poem and for eventually recording the radio play. I now have a large hole in the wall between my office/studio and the piano room through which I have inserted various substantial cables (M is so tolerant) – also had to remove all the clocks that ticked. So now have a pretty good set-up that’s ready to go when I can recruit a few local actors in the winter. I have also set up two web servers at home to host some of my more experimental offerings that tend get me into trouble with commercial ISP’s. I have a fixed IP now. One old MAC cost nothing at all and the other PC cost £15 from Ebay.

I am not reading fiction as much as I was as my intake of technical material has had to increase substantially but looking forward to getting back to stories and poems. People are sending me loads of interesting links and suggested reading. Apologies if I don’t report back straight away but I am lazy.

Bowels and bidets

We have a new bidet and I am happy. Without wishing to put any of you off your breakfast, when we first considered installing one it was not some aspirational, continental luxury, it was a necessity. You see at first, yours truly just could not contort his limbs into the optimum position for effective personal hygiene; thus he was forced either into the shower – a grandiose expectation for the loo in Tesco’s or worse sitting in the sink with all the ensuing peril of it, or yours truly ending up on the floor in a trouserless heap of brick dust and cascading water jets. Anyway the journey to this installation was not without it’s amusement. In particular I would like to draw your attention to the first solution offered to us by the plumber. True it was ingenious as it required no extra porcelain, true it had the virtue of a ‘remote control’ but as M put it ‘you can’t wash your feet in that’ besides which, as you will observe from the video at the bottom of the pages (linked below entitled: this is how Gerberit Aqua Clean works) one could imagine some extraordinarily humorous, not say dangerous incidents for any guest who might mistakenly wish to flick through the TV channels to catch up with the footie while having a dump. http://www.geberit-aquaclean.co.uk/en_uk/produkte/geberit_aquaclean_sela/geberit_aquaclean_sela.html