On my highest horse

This is my last retrospective posting.

From now on I will blog in real-time and keep any private correspondence as e-mail. This was my response to a list member who said that she could not justify her faith. I am now in my stride and am trying to sound shamelessly clever-

“It’s 2 :30 in the morning and I am as bright as a button  so I thought it would be fun to challenge myself to address your point about ‘justification’ – something that I, on occasion, get quite excited by.  Forgive pretentiousness and gobbiness.

As I see it engaging with these sorts of issues for most people is not a priority. Frankly they are not interested. That does not mean that they cannot or should not engage. In your case you say you are not worried, but you clearly spend time worrying enough about ‘meaning’ to engage with L’s poetry and all your other cerebral cultural pursuits. I would suggest that like many people of faith you think it’s integrity would be despoiled if you sought to justify it. In other words it is by nature ‘beyond justification.’ By beyond justification what you really mean is that words cannot be used to describe it and in that respect Wittgenstein  and me would agree with you. I will come back to this point in a minute.

‘Faith’ is believing in something without seeking justification. That is fine as long as it is not allowed to preclude debate. Some religions (not all) exercise political authority by valuing faith over faithless. Notions of the faithful compared to the faithless are then imposed usually by powerful men over the less powerful (quite often women) in their society. Thus religion and society become intertwined, and while in the less offensive examples there are checks and balances imposed by political systems like democracy, many living under these ‘faith based philosophies’ are simply bullied. And nobody likes bullies! You may note for example there is no leading political  figure in America who is openly atheist. In this case political expediency promotes unfairly the notion of Christian faith. Fortunately there are so many other counter-forces at play, not least technology and the media that the outcome is not disastrous.

Back to Wittgenstein. His argument, as I understand it, is that the only tool we have to engage in debate or to seek out truth is words. But most words are meaningless except as relative expressions of other words. This produces cyclic arguments where one definition can only be true when compared to an agreed definition of another and vice versa. Faith and faithless would be an example of an argument which is ultimately without meaning. Hence he implies not worth bothering with. He was an exceptional mathematician and I am afraid I just don’t have the intellect to engage with the maths but my lay persons interpretation of the next part of his argument is as follows. (I am really not sure this is what he intended but so what).

Some expressions are less amorphous than others (for him those formulated in the language of maths in particular) but for me, at least one step away from maths, those formulated in the language of engineering are more accessible and the outcomes can then of course be simulated on computers. Things like weather, populations and economies can be simulated but the results are not reliable. On the other hand the fundamental factors underlying these models are discrete numbers ie. with fixed not continuous values a bit like words which can be defined in terms sufficiently absolute to mirror the laws of physics. In particular the number 1 and 0. So my argument is that the closer a word comes to being definable as either a 1 or a 0 the more it is potentially subject to worthwhile debate (particularly in a political context where real outcomes affecting people are likely) the further it is from being definable as one and zero the less worthwhile it is. Of course it can still be worthwhile for reasons like exercising the intellect or enjoying the discourse, that’s absolutely fine, but it should not influence the more fundamental values of broad societal fairness. This list sets out a few potential test cases that get increasing more problematic

On or off
Live or dead
Hungry or fed
Schooled or illiterate
Man or woman
Free or enslaved

Now we can go on arguing about the degree to which these binary oppositions are truly binary or meaningful but my point holds that some of my examples can be abstracted and tested reliably by a machine and thus there is some evidence that they exist as quasi absolutes outside of human variability and fallibility. Of course that has nothing to do with God who cannot be defined in binary terms.

But ‘on’ and ‘off’  can, and there is some broad consensus that a dead rabbit is the binary opposite to a live one. Even in religious terms that the two rabbits are in different states, however those states are then defined by the particular religion.

So where does that get us.

My argument is that for religion, faith, belief, instinct, gut feeling etc to be meaningful beyond the personal they must be justified in terms that broadly respond to our best and most current guess about the laws of the physical universe. This can then to some degree be tested. We can measure whether our rabbit has a pulse for example.

My view is that It is the physical universe that matters in terms of a cure for Ebola, feeding, clothing, housing people, ensuring that bullies aren’t allowed to lord it etc. It  is only as a result of the emergence of societies like ours, where these issues are to some degree addressed that we are empowered to recognise injustice and do something about it. That is a responsibility that must be exercised politically by encouraging the global redistribution of wealth which is the biggest single factoring in proliferating justice that we are able to control  (there are plenty of even more important factors we cannot control). Faith has singularly failed to address these predicaments and if anything it has made them worse. Thus it’s about time the faithless were given an opportunity to have a go and those with faith shut up for a bit.

G’s argument would be that disastrous post enlightenment political systems have had their chance (and I agree the soviet model didn’t work) but as I see it the 2 or 3 hundred years worth of failed attempts pales in comparison to the millennia of failure demonstrated by the faith based status quo. I think the real dawn of robust but tolerant atheism (not the Dawkins brand) has yet to break. I don’t suppose I will be here to see it but I really hope my children or their children will be. The alternative is really quite unthinkable but sadly very possible unless there is some significant resistance.  It is  certainly not just Muslim fundamentalism that needs to be addressed. We need to continue to ensure there is a wholesale deconstruction of links between church and state along the French model. State support for religion should be as competitive as state support for the arts. Education must encourage faith debate but not support a faith.
End of rant.

Had a great time at Chemo yesterday. Met somebody else from the village who I used to be in W with me. M abandoned me and went to talk to him at his bedside cos his wife has died (breast  cancer just after M as it happens) really felt for him going through his treatment  alone. I continue to be so moved by the compassion and care exercised by the staff at Y. I really think it has been the most positive thing to come out of this. I find myself really liking people in a way which I didn’t somehow have time for before. Not that I didn’t like people it’s just that now I am almost in love with them all –  male, female, senior, junior whoever – they just need to be nice to me and like a Labrador I come running up to  lie on their lap. MUST BE THE DRUGS.

Anyway 4:50 now so time to get up.

Please, please never take my vents seriously. I cannot account for why I take such pleasure in mouthing off but the absolutely last thing I want to do is hurt anyone. On the other hand the other absolutely last thing I want to do is to turn into some sort of ill person that cannot be berated or challenged.

 

Starting to get a bit “clever dick.”

Time for another update.

Peppered with pretentiousness for your, but mainly my delight. Well why jolly well not.

It occurs to me that I am trying too hard to mint great literature. I think it because I know so many of my audience are so much more literate than me. We also have a good number of teachers in our community who tend to be able to spell proper. So this time, apart from the corrections imposed by my ipad I will endeavour not to go back over things or to think too hard. I don’t want this to turn into some sort of competitive show off particularly using any measure of wittiness – something I am not at all comfortable with.

Later that evening – well that didn’t work – just read it and tidied it a bit – no confidence in my stream of consciousness spelling and grammar.

This week M and I have been at a hospital for 4 out of 5 weekdays. So it must be getting quite a bore for M although she says not – she is actually really completely the best person in the world. We are certainly reading and writing lot while waiting a lot.

The experience at Y continues to be quite a party. I had a new nurse this week who had started out as a district nurse and consequently her technique with the injection in the stomach was immaculate – this was the first time it didn’t hurt at all – straight in like a dart –  2 secs later out and  done. She promised next week she would stand me against the wall and throw it. I was very grateful for the thoroughness and professionalism that they always show as one of my semi lethal potions was actually the wrong dose and because of the double checking cross referencing procedure they spotted it and gave me the right dose. Phew! It does cause you to think twice when your medication arrives labeled ‘toxic biohazard.’

Word of warning to anyone who has to go through this sort of experience. Beware of contagious anxiety caused by crowded hospital environments. I was feeling more than relaxed about H because I knew they had already diagnosed my condition and I had had all the available bad news from my consultant. On day two of the tests we found ourselves waiting with quite a few people getting initial diagnosis and they were crapping themselves. Suddenly I started to relive those days before I knew what I had, so by the time I went to get my results I was pretty nervous even though I knew in advance what they were. Best to stick your headphones on and remain isolated from the vibe when the room is crowded either that or you may pick up on bits of conversation and speculation that are not comforting to say the least.

Yesterday and today we have spent at in H. G, A and A all came to see us so we had a really fun evening with awful food at the P followed by a really nice lunch the following day in some posh square in H actually sitting outside a vets.

I have already raved about the service from the R which has been immaculate – chauffeured down from Y, nice hotel etc. The tests were quite weird and included rushing up and down a corridor for 6 minutes to see how out of breath I got and being made radioactive. Apparently one show off had sprinted it  achieving 35 laps, nearly a kilometre. Umpteen scans most of which (without wishing to appear pervy) were conducted by various very attractive young women who had the pleasure of stroking every part of my bony ivory body with a range of probes and scanners. And it being a  research centre they don’t wear those bloody awful NHS uniforms – thus being commanded to take my clothes off by a young woman wearing a short skirt looking much like one of my students was principally grossly humiliating but in retrospect not without a certain vividness. Don’t worry ‘her indoors’ was with me in the room. Gaud my bony ivory body must have been  such a turn on for them. The only test which turned slightly farcical was the all important one in some machine that could read where all the bad stuff was. I was obliged to remain stock still for 30 minutes and encouraged to listen to my choice of entertainment. I had to take my glasses off and it was only once the machine had started did I realise that I had put the player on fast play so my whole episode of desert island discs played in a thrice as if Kirsty Young was on speed – then silence for the remaining 20 minutes. I must admit this test was conducted by a relatively austere but pleasant Australian male technician but he did let me turn on a mini recorder to record the room ambience for my radio play. I was looking forward to lots of electronic medical  sounds In fact the machine was as silent as my episode of desert island discs. So I now have 30 minutes of air conditioning sounds.

Results were as expected and I have bad stuff on the liver but no bad stuff anywhere else too important. Best news is the heart is very good. So the problems remain centred around the cancer itself and I don’t have to come back to London for another year – (GOOD). As far as the cancer itself I may be a candidate for the drastic stem cell rebuild or not (depending on a blood in poo test) either way there are ways and means to treat but not cure my condition. So really no change and most important no really bad news. So back to Y hospital tomorrow for darts and the drug that gives me the flu … Joy!

So far I have had one verbose rebuttal, one sulk, several tellings off, some unwarranted praise, a number of promises not to think of me, a couple of ironic prayers and any number of cat (or variants on cat) videos – so I am delighted and kept wonderfully amused. Please keep em coming.

Please don’t be either hurt or intimidated if I copy the odd thing you have sent me on to the list. I assume if you are writing to me, unless you so specify, that any juicy bits are distributable within this limited public domain – for example my neighbour G gave such a spirited rebuttal of my last vent that I think it should be circulated in full – apart from the stuff about choral evensong which is clearly wrong the rest is probably right, so all you closet or not so closet right wingers out there take comfort this list is more “catholic” than you think. Seriously some of you need to read more closely what I actually said about my ridiculous prejudices before you think I don’t love you anymore. I have added G’s rebuttal  to the end of this e-mail.

You may have noticed there is a distinctly middle class vibe about this community. I find it interesting perhaps a bit disappointing that my range of ‘interested parties’ is in some respects so limited to that narrow range of people I feel comfortable with. There are no representatives from the proletariat nor from the aristocracy despite numerous opportunities to acquire these sort of friends throughout my life I find my self stuck with you lot, a load of people very much like me. So the danger is to remain unchallenged  in so many ways. Other than G there seems to be a broad acceptance of my nonsense which I can only put down to the curse of middle class politeness something I really do dislike (nah not really). Having grown up intellectually in  theatre I love to be challenged by grumpy actors and singers who think my ideas are crap. The academic community in general are terrified of this sort of direct engagement with passionate argument something much to its detriment in my view. So please follow G’s lead and if I say something that makes your bold boil – let me have it!!!!

Actually I think I am out of rants for now. My key ones have been expressed and as a consequence I may get bored with this process and jack the circulars in. We’ll see.

I am being sent so many stimulating new leads into literature, poetry, engineering, philosophy and music I now feel really spoilt for choice.

Here is G’s rebuttal – with his permission.

That’s it

Dear Chris,

Much enjoyed your extended bout of intellectual flatulence, which you have just forwarded to J. I fear that I cannot be your ‘friend’ as I do not meet two of your key criteria, namely ‘on the left’ and ‘atheist’ but I am happy to plead guilty to ‘inconsistency’ and ‘cynicism about beliefs’ and may or may not be ‘amoral’ and ‘tolerant’. I fear I am tolerant of capitalism which over three centuries has done more to alleviate human poverty and misery than any number of left wing nostrums.

Clearly being on the left tends to assume an acceptance of a belief system and supporting the Worker’s Revolutionary Party puts one in the same class of believing loonies as Flat Earthers and Cornish Wicca People( and this may be being exceptionally unkind to the latter.)I shall pray for you to be rescued from the hands of revolutionary fanatics and placed within the safe bounds of the Anglican Church and the Tory Party.The Tory Party,(Thatcher, who was an aberration, notwithstanding) has a profound suspicion of belief and ideology and the Anglican Church makes a virtue out of theological inconsistency. It is clearly your spiritual home. You can almost get away with atheism within it.Cranmer’s Service, untouched by modernising morons of the twentieth century,should meet your exacting artistic criteria and Cathedral choral Evensong can still express better than almost anything else, what Archbishop Laud described as the ‘beauty of holiness.’

I look forward through the efficacy of my prayers to a wholesale conversion on your part and a return to our  consumption of fine wine together

yours prayerfully

G

And here is my rebuttal of G’s rebuttal

Dear G

You are definitely my friend and so is J!!!

I think yours is a classic rebuttal and if you don’t mind I would like to circulate it with my next circular. Can I do that?  It was also very funny indeed!

I can’t defend my prejudices and as I tried to make clear I am not proud of them. I actually agree intellectually with everything you say – I think that was the point I was trying to make – namely it is intellectually acceptable to hold contradictory views depending on your “system state” at any one particular time. Just like a computer program we go through a series of state transitions depending on fluctuating value of the variables at any one time. In other words everything is temporary and nothing is dumber than seeking to verbalise truth, any truth, scientific, religious, political or dare I say historical  – “Whereof one cannot speak, thereof one must be silent.”

But silence is uncommonly dull at dinner parties so it’s better to come up with something – SWP, God whatever and ‘fessing up’  exposing ones shallow prejudices seem to me the only way to achieve some honor in a thoroughly dishonorable game. Wittgenstein again  “Nothing is so difficult as not deceiving oneself.”

You are wrong though about the music thing –choral evensong and even Bach is ‘musical flatulence’ in comparison with the great Italian catholic heart-on sleeve outpourings by the likes of Monteverdi, Rossini, Verdi or Puccini,  or of course Elgar; (an English Catholic) as you probably know.

But if you don’t know it check this section out from Dream of Gerontius – it turned me into an Atheist Catholic.

Go forth upon thy journey, Christian soul!

Go from this world! Go, in the Name of God

The Omnipotent Father, who created thee!

… etc

Yours ‘truly’

Chris

My tongue is loosening

I am in the mood to write again

– no steroids this time and not absurdly early in the morning, just fancy offloading some random thoughts.

When people write to me I add them to the list, so since starting these circulars R, B and C have all been added – if anyone finds them (the e-mails) annoying, just delete them – I am pretty sure I would if one of you were to inflict similar on me.

I am so pleased with the things people have been sending me. From prayers (thanks for that!) to lovely pink and poetic cards (another favourite) to model steam engines, sticks of rock, mix tapes, pandas falling over and taxidermological fiascos. I really enjoy reading your news so please offload all the gossip and irrelevant nonsense cos I love it. Glad to hear so many of you are not thinking of me it makes my day.

In the spirit of the last e-mail I flatter myself that the only positive thing that could possibly emerge from you reading this, is some sort of insight into what it is like to have taken that step into a world of which, I suspect, most of us are pretty frightened. That way it may be a bit less frightening.

Talking of frightening I think it’s very important to start by fessing up (only just learnt this expression – plan to use it a lot) – I am really not sure that I would be as jovial without the chemical interventions provided by our wonderful NHS. Cobblers to the notion of toughing it out without ‘mothers little helper’ I take three drugs that probably have quite an effect in terms of ‘lightening my mood’ – First a daily anti-anxiety pill – apparently according to my GP most (90%) of his cancer patients take it, Second – I have already told you about the superman steroids – they induce wellbeing as well as helping the chemo to work more effectively – and third I take a morphine based pain killer which is wonderfully addictive. I came off it for a day, because it makes you pretty sleepy but I sure ain’t doing that again – nearly climbed up the walls with twitchiness.

It seems to me to be an entirely good thing to a spare yourself from some of the black dogs that inevitably hang about waiting to bite you and more important to spare everyone around you from having to watch you struggling against the black dogs. So far I have had two half doggie days both before being given any of the lovely addictive chemicals and those two half days were not fun for me or M. I am in love with the rest of my drugs. It is so touching to see them working so hard to get me better. Every now and then like well-meaning friends they make a complete cock-up and make you feel quite a bit worse but I never doubt their good intentions. My nurse was so pleased that I felt pretty awful as this indicated that the drugs might be working – she actually said something like ‘oh good’ when I rung up to find out if it was normal to spend the night with chattering teeth and hallucinations about bears in bed with you.

My mobility is now minimal (or crap). Probably because I have become very lazy but also because the drugs initially stimulate all the previously hidden symptoms to come to the fore. I certainly never had leg ache but now I walk like Douglas Bader. I had very minor rib ache but now I make melodramatic groaning noises every time I stand up. I am extremely lucky that none of the pain is continuous – it is completely absent when I am still or in bed (hence the laziness). M has ordered me a wheelchair to accompany my blue badge (hope I get it) – so I am set for complete self-indulgence and idleness.

I do wonder what it would be like if I had ever really valued mobility. For those active people a period of such physical inactivity and the prospect of some minor degree of disability continuing indefinitely would probably be tough but I must admit in order of priority physical mobility comes pretty low. My priorities for well-being are

  1.      Brain – most particularly imagination
  2.      Speech – being able to let words escape
  3.      Hearing – being able to let sounds in
  4.      Sight – well that’s obvious
  5.      Moving about -  nice to be able to do so – but bottom of list

One thing I am sure of. The desperate scrabbling about to experience the world eg – holidays, day trips, cultural excursions, cruises etc is not for me at all. I am very content surrounded by the familiar but still interesting. I am more content carefully crafting one synthetic sound of 3 second duration (which may take several hours to do) than faffing about with the rest of the world most of which seems dull in comparison. I saw the programme on the penguin post office in the Antarctic and I found it sad that the anoraks really did think their lives would be incomplete if they had not been able to experience that sort of adventure. I really approve of the watchmaker who spent his entire life just making a few perfect watches from scratch (ie. from the raw materials). True they now sell for millions but even so.

I admit that one of the side-effects of this relatively static and introspective lifestyle that I have to be wary of is that I am becoming a bit intolerant. If you detect this in me could you let me know. I am getting more and more the sort of person who can only really relate to people who share in my world view. I don’t want to be that sort. As I get older I seem to be getting further and further to the left. I now subscribe to the Socialist Workers Party meetings in Y but have never attended a meeting cos the subject matter looks so impenetrable. At the moment to be my friend you have to be

  1.      On the left
  2.      Cynical about beliefs
  3.      Amoral
  4.      Atheist
  5.      Inconsistent
  6.      Tolerant (ironically enough) but intolerant of right-wing views, capitalism, conventional wisdom, racists, bigots, homophobes, fundamentalists

In other words I am in danger of not liking people just because

  1.      They are conservative
  2.      Believe in stuff (god in particular)
  3.      Are not like me

…which is an attitude nothing short of being a complete arsehole. Something I would rather not be.

Now marry this dilemma with the fact that I enjoy listening to William Hague and Nigel Farage more than most members of the current labour party – many of whom are just plain dull. I also quite like the queen and (confession time) David Cameron. I admire the current Pope and the ex Archbishop of Canterbury but I also like Tony Benn and Dianne Abbot. I love the Catholic rituals and music and despise Catholic ideology but I seem to get on better with Catholics than Anglicans except Quakers who are generally very cool. I find Scandinavian society smug and conservative but admire their socialist communal spirit and high taxes.

In the end I cannot escape from the incredibly arrogant view that it is possible to sustain a completely satisfactory life with completely contradictory views about everything.

Such as – it seem absurd that a wealthy individual such as me is able to access so much free stuff from the NHS and yet I am really grateful and enjoying the benefits which should rightfully be spent on others – Frankly I should be forced to contribute more but…

We get so much free stuff – my prescriptions would cost around £50 each time but I don’t have to pay until 2016- I get free parking at the hospital and loads of free services like aromatherapy, counselling, massage etc. I have had handrails fitted around the bath and on the stairs, I also have one of those attractive over the armchair tables and a stool to sit on while I brush my teeth. I never imagined taking such pleasure from these horribly ugly bits of furniture but I tell you they actually make a difference, besides the people that come and advise you are so keen you feel obliged to say yes to everything. I eat well and am putting on weight (also hence the laziness) – I can eat absolutely anything but am encouraged to eat all the bad stuff and prescribed free food supplements– I was literally prescribed cream cakes by my consultant as I had lost 2 stone and about 2 inches in height before the treatment started.

Most remarkable of all is the trip to the R on 6th 7th August. M and I are picked up from Y by car, driven to London, put up in a hotel, driven back and forth to the hotel and taken back to Y the following day. During the time I am there I am given world class diagnostic attention by international experts – WOW! It seems to pay to have something rare!

anyway

So I am in the week off between cycles with no hospital visits. Start again on Tuesday with a consultation – may get a blood transfusion cos of persistent anemia – apparently that can make you feel a lot better.

I read a lot and listen to the radio. My favourite read has been Hermann Koch -The Dinner. Having not been a fan at all of fiction, now that I can read just for pleasure I find it interesting to find out what it is I choose to read. It’s quite dull really. I like to recognise something in the people in the book. They tend to middle class white people doing something arty or academic. The frame around them is broadly realistic – ie they live in London, go to work, are in relationships, maybe have children and are NOT Magic or have funny mythical names. Their world view is aligned to mine ie. they don’t believe in anything. The book will peel away cosy assumptions and reveal something disturbing, amusing, sexy, revolting, suprising and  possibly a tiny bit fantastical. That’s it, my formula for a good read. The Hermann Koch does it for me but also some science fiction (not the over spacy stuff) – actually I am quite keen to have some recommendations on the science fiction/fantasy side. I liked Nod (just the first half) by Adrian Barnes and I liked some stuff I read by Nicholas Royle. I loved a radio adaptation of a short story by Ray Bradbury – ANY THOUGHTS ANYONE?

That’s it.

 

Testing the Water

This was my second communication and the first substantial one. The cancer without God theme is beginning to emerge cautiously but I suppose I was testing the water. It may be a rather drug-fueled and pretentious outburst (they get worse) – but I was beginning not to care.

“I am in the mood to write about me after emerging from a predicted slight flu brought on by one particular drug. Not really that bad.

This creativity doesn’t happen every day and may never happen again but the steroids do make you feel energetic and slightly irresponsible and so here I am, very early in the morning, at my desk about to self indulge.

Be warned I am feeling feisty so the content and language will be earthy and I am bound to cause offence to those of you of delicate emotional or lavatorial dispositions. But you have to forgive me cos I am poorly.

I think I can only write like this for three reasons and in this respect I am very fortunate.

  1. M
  2. My prognosis is not too bad
  3. Any pain is very manageable

I would not expect other people in other circumstances to behave like me. On the other hand prior to the cancer I would not have expected to behave like I am and further down the line I have no idea how I will behave (brace yourselves). For those of you who, like me, are terrified of getting the disease, you may or may not find the following surprising, even reassuring or you may just think I am wrong.

So off we go:

If I was to get an e-mail about a family member or a friend who has cancer I would almost certainly ‘read that one later’. If this is your inclination I am right with you. Deleting it is probably too much for most of our moral sensibilities but ‘saving it’ is just fine with me.

Important rules of engagement in case you should give up before the end of this e-mail.

  1. I do not require, indeed want a response of any kind
  2. Under no circumstances visit me. I mean this!
  3. I hold very strong views about stuff usually for the duration of a dinner party and then change them – so don’t take offense!
  4. To all those who I have not heard from since I announced my illness. I love you all the more because you are like me – scared or could not give a damn.
  5. One day someone will dare (It won’t be me) to write to me as I would wish to write to anyone in a similar position as me: “Dear Chris, Didn’t give you a second thought for the last month, much too busy, but came across the video of the sneezing Panda and had to send it to you. Hope you live.”

Words or sentiments to avoid in any future correspondence (that should inhibit you all, tee-hee): – thoughts, prayers (off the scale that one), strong, battle, brave, hope. Any reference at all to the specifics of my condition or tales of survival. Fitness, diet, holism. Money, pensions, insurance etc…

Stuff I like to hear about (in no particular order) – Pets, family, friends, books, meals, films, adventures, absurdities, high-art and intellectual debates, culture, science, politics, religion (not church), philosophy, your feelings about you and the world, really depressing stuff one can be objective about (not possible to include children ever in this category), speech synthesis, opera, music in general, your hobbies (especially shameful nerdy things), anarchism, socialist libertarianism, Damien Hirst and conceptual Art, your work, war, law, fundamentalism, radio 4, radio drama. To be honest I have never been that interested in even my own holidays so you stay out of that one. ..and as you probably all know by now stay off birthdays (specially cards),  formal occasions probably to include weddings and christenings – Ok with funerals though. Sports is Ok but only really World Cup and Wimbledon – Children are Ok (discussions on mine and their brilliance of course are to be encouraged) but any reference to children better have a good punch line such as ‘and she came last but couldn’t give a shit.’

To sum up anything that hints that you may put any credibility in notions of authority, conformity or duty, exercises the same spirit in me as last came to the fore when I was four and half years old walked into primary school and thought – ‘well I ain’t gonna have anything to do this malarkey.’

So I ain’t gonna to do with this cancer sufferer malarkey either.

Footnote to the above (my defiance at school lasted lasted till milk break – followed by 12 years of being scared – shame I don’t have a more heroic precedent).

On to the nuts and bolts of cancer  (no discussion of other equally troubling diseases cos I don’t feel qualified to comment)

If like me you have to go through the Woody Allen experience of sitting in a room with a consultant who tells you have cancer I believe it is much better to have to some degree at least rehearsed this possibility. Out of the blue must be truly awful, it was for M – much worse than this last experience. Being essentially a person who since four and a half sees the world as a place where bad stuff does happen my only thought when this was announced was not ‘how bad’ but ‘how bad?’ Once it was made clear that it was just bad, not disastrous I was genuinely happy! Believe me! Lets not beat about the bush – disastrous, as G put it, would be ‘returning from the hospital in an urn’  or anything involving prolonged pain.

This does not mean going through life assuming every lump or tickle is cancer. In fact once you have realized that there is no reason other than probability, that it isn’t cancer, that can be quite empowering. No longer cursed by the sense of ‘no it just couldn’t be that – that’s just too bad’  better to think ‘well it might be, but it’s probably not’.

For future reference select your GP with care if you want to avoid sleeping tablets. I saw 4 different ones. Between then they

  • Looks at the results with barely concealed horror and confusion
  • Told me it might be Ok but they weren’t sure as yet (probably the best strategy)
  • Laughed cos I did at the poisonous nature of chemo therapy, told me they had lots of patients with similar types of things who did fine and that the treatment was the worst bit  -offered me loads of uppers, downers, unpluggers, builder uppers –  two carrier bags full of medication (my personal favourite)
  • Said ‘I need to Google it. It’s rare.” (made me feel special)

I am very lucky with my consultant.

  1. Exceptionally smart
  2. Not matey but caring
  3. As direct as you wish him to be –I don’t always want him to be (PERFECT!)
  4. Shares my sense of humour
  5. Can stick a bloody great needle (pipe) into your bone 3 times and it doesn’t hurt (that much)

Likewise the cancer nurses are

  1. Just as smart
  2. Matey and caring
  3. Funny and very kind
  4. Very knowledgeable and always available
  5. Incredibly patient
  6. Interested in me

The care is fantastic:

Any mention of any side effect or minor malady and they are on the phone arranging blood tests, new specialists, bath rails, counseling, massage, nutritionists, changes to the regime, new appointments. You end up being careful what you say in case your spot on the end of your toe caused by the cats flea outbreak does not result in a trip to the school of tropical diseases for a scan.

The next thing to be ready for is that most people (unless that have been through it) react as if you have just said ‘I have just been told my head is on fire.’ I love these people and their subsequent reactions (usually to try to avoid you as elegantly as possible). Their absolute abandonment of me often betrays so much more concern than the solicitous follow-up and, for me the most hated icon of conformity the CARD!!!! Gifts are completely different –keep em coming!

M and I have experienced the following classics

  1. Crossing the street to avoid you
  2. No words at all just burst into tears and run away
  3. Complete speechlessness
  4. A wonderfully inappropriate joke
  5. An anecdote of how a friend died of that exact same condition (what a coincidence)
  6. An offer of prayer  –  (childishGrrrrrrr!!!!!)

The treatment itself.

I have no great gripe. I take one medication by drip that so far has made me fluee for a couple of days the rest are fine – except one quite amusing thing.

I can only assume that most researchers into cancer drugs are either very regular or loose. It seems that every potion you take conspires to bung you up. The solution is to proscribe unbungers. This is a delicate and refined art. On my biggest day I take

  • 10 x some drug
  • 10 x some other drug
  • 8 other individual drugs some twice a day
  • 1 injection in tummy
  • 1 drip 30 mins
  • tramadol, paracetomol

Nearly every one has the effect described above so I can take up to 8 doses of a powdered laxative that tastes horrible. Judging this was a nightmare, I was particularly concerned about the 30 mins absolutely stock still in the MRI scanner. I just hope they did not pick up any internal bodily audio as my stomach sounds like a washing machine. Anyway I think I have cracked it – PORRIDGE.

I am fizzling out for now. There or may not be more to come or not, sometime. As it’s now 8:40 I want to do something else for a bit.

And I just got a stick of rock from V – now that’s what I call empathy.!!!”

 

 

Politely asking people to “bog off”

This was my first communication.

I was keen to prevent people coming to see me or ringing. I think it was helpful as I don’t expect people wanted to see me much in the state I was in. I was relieved and they were relieved. No mention of God – that starts to emerge once I am on steroids and awake at night with a very active mind.

“Thank you all so much for thinking of me and being concerned. I am very OK. M and the boys are being wonderful.

It goes against the grain (I am not the round-robin type) but I thought it might be best to keep you all updated from time to time about how things are going. I know some of you are worried that I might need visiting or phone calls, texts or whatever.

E-mails are great but anything else particularly visits just rattles me at the moment. It’s vanity actually. I have lost lots of weight and frankly look much worse than I feel. The other reason is I am just plain knackered (probably because of the anaemia) and tired of talking about cancer – so please feel free to share ‘soul bearing’ e-mails with me whenever you like, please don’t come to see me or telephone but of course come to see M or the boys just as normal. When I have finished treatment and feel more human I look forward to a stream of visitors, preferably bearing gifts.

I start my chemotherapy next week. Don’t have any idea how I will respond but hopeful that soon I will start to feel better.”

Chindogu

I was introduced to this concept at a workshop ages ago (it is probably old hat by now). I have been hoping to follow it up with a project, either a student activity or perhaps something that relates to my interest in design for disability. i came across a British maker and artist Jasonmade https://www.jasontaylor.me/who is making and selling ready-made art inspired (I think) by the Chindogu https://www.tofugu.com/2012/02/20/chindogu-useless-japanese-inventions/concept. I think some of the objects are stunning. Here are some of my favourites

 

Cotton shots

 

Cling Film

 

cling film

 

Marble Display

 

Marble spots

 

 

Sharp Pencil

Sharp pencil