Month: November 2014

Today pus erupted out of the cats head all over our bed and he was so relieved. He ran down stairs for a snack. Poor Mitch has been through the wars recently with an intruder cat or possibly a stoat or a rat or even a squirrel. We don’t know which. His brother sure doesn’t care but we do.

Anyway along with that news came an epiphany. I was clearing my shelves to return books to the university library, some of which I have had for 9 years and I was struck by (a) the number of books I had no recollection of whatsoever and (b) the number of books meticulously marked up with Post-it’s for reference purposes for the dreary, largely pointless academic papers I have published (my predictive text spell check just gave me ‘dada sic’ for academic hmm). I realised that I really did not care who said what about whatever I only really cared about what I said. More particularly I only really cared about what I did on the basis of what I said, if anything, sadly often nothing. Of all the academic things I have done the only one I am really proud of is the film I made and the melodrama I conceived and co-wrote. I believe these were the only things I did that made any difference and that was just to make people laugh with people with a disability (cut the crap we laughed at them as well). I am secretly proud of my PhD mainly because I managed it at all –not being the sharpest knife in the drawer, I still can’t do sums. Of course all this dismissiveness is an exaggeration. I have always plundered the great for ideas but still the notion of copying their great stuff from one very worthy manuscript to another slightly less great or worthy, when you could be writing, drawing, engineering something of your own, does seem silly. We teach our students to do this and some are brilliant but others should really be let of the lead, despite registering for university they are not trainee academics and by forcing citationism down their throats we throttle their creativity as effectively as the Christmas Turkey.

My epiphany was probably accelerated by a dear friend who told me he had not read for pleasure for years – nowadays he reads for citations – what a shame. Still he is a professor and I ain’t.

Where does this lead bookish scholarship – well I suppose, not for me, is the answer. Is this a suicide note addressed to academia, of course not! I have every respect for great scholarship but not a lot for bad variety, the all long words and not an original thought in sight, the complexity for complexities sake, the reading of papers at conferences (for gaud sake we can read it for ourselves) the pomposity of some academics, the pretentious robes and rituals and of course the dada sic. Academia should be a great place for doers and makers as well as thinkers and writers. Academia should be a magnet for bright interesting people not obsessive compulsive citationers who cannot think for themselves. It may not be what Plato had in mind but I would not be so sure of that.

I have left the layout of this as written but the latest news is paragraph 3.

The last two days have been spent in hospitals mainly waiting around for blood tests – lost count of the number of phials I have dispensed but there are a lot of holes in me. My anaemia has nearly gone and my response to the treatment so far has been described as excellent by the consultant. The suspicious proteins are still present in very small quantities. The goal would be to eliminate them all together if possible but so far I have only had a very short course of chemo so there is plenty in reserve. I write this while awaiting the verdict from the consultant in Leeds regarding the desirability of the stem cell transplant thing. (More later)

I have knocked out a fairly pensive poem while waiting to be seen, despite not feeling pensive at all – I am such a drama queen. It is so easy to lapse into muses on existential suffering or solemn sonnets on hospital waiting rooms but this really is too easy and pretty boring. I am also tired of my attempts at my sub Victoria Wood skittish parodies of the hospital experience – so where to now? Maybe I should just shut up for a bit, stop this silly blogging and do something worthwhile (whatever that is) with my time – but what? I am so happy rambling, happier creatively than I have been for years. Not happy with the output (who cares about that) but happy with the process. I confess I don’t feel an overwhelming responsibility to do anything worthy. I do my university work, although until the end of today when I should have a treatment schedule, it has been impossible to get really involved because of the likely hiatus. I work on research projects fairly solidly all day, feed the cats, make dinner for the two of us very reluctantly and only when I have to or can’t play the ill card, buy stuff on Amazon (lots), get obsessively involved in unimportant technical concerns (see note below), buy fish from the fish man, polish the tables we inherited with a special balsam, fix things with glue, answer cold callers sternly, grind coffee, chat with family on whatsapp, read, write my poems and watch a significant amount of TV – House of Cards, Peaky Blinders and Antiques Roadshow are highlights. M makes it possible for me not to have to think hard about practical things. We have fun fights over my spending habits – my utterly unprincipled enthusiasm for luxury such as Ocado shopping (goes against all that pontification on social reform I am so fond off) and the excessively hot house I insist on (I turn heaters on in bits of the house we don’t use). M is very easy to wind “wynd” up and I have enjoyed so doing all our married life – poor thing her brother did it when she was a child so she has had to endure a lifetime of wind ups from pesky males.

Later that morning. I saw the consultant and the plan is to delay any transplant or potentially not to do it at all. It depends on whether the current treatment can continue to be as effective and further reduce or eliminate the amyloids in my stomach lining. Until these have been further reduced he says the risk of internal bleeding would be too high. So I am having two more courses of chemo then another load of tests (endoscopy again hurrah!!!) then a full scan at the Amyloidosis centre in London and then reconsideration of the next step. This takes me until Easter. In my view this is an excellent outcome with the right degree of caution and plenty of options including some new drugs developed in the States due to come on line very soon. The only disappointment is that I am effectively still in waiting but that is something I am used to its just hard on M and the boys. All in all great though – onwards and upwards I remain very excited about all my projects and very optimistic overall. I am also looking forward very much to Christmas at home and maybe a gig in the new year after the next two courses of chemo.

I have had to do so much messing about in the last week or so you must be wondering what’s going on with the site. It’s a very boring story but I have had to host the site myself as the result of a wave of incompetence shared across BT, Vodafone and my ex web hosts. Anyway so long as we don’t get a power cut or the cat is sick on the server I hope the site will be a bit more reliable soon – I can enjoy the challenge anyway. The only thing you will notice is that you will be transferred to a strange address starting with fleeting.eu (named after the river Fleet which runs near our house) and any old links you have bookmarked may not work.

Love to all – send me your news please – I get bored with my own.

Quite difficult to explain what went on here but I was touched by the outcome see below.

I had to find a way of avoiding paying a very exploitative website host an exorbitant hike in their hosting charge so I decided to go it alone and host my own websites – hence the on off scenarios of the last week or two. Anyway it’s perfectly possible to host your own sites if you have a spare PC but you need to set up all sorts of free bits of technology scattered all over the web run largely by enthusiasts as well as entrepreneurs who hope to sell you some sort of upgrade to a professional service. Anyway one part of the operation was very difficult to figure out so I communicated directly with the developer, with a low expectation of a reply. He sent me a very helpful reply and professed an interest in the name of my website – cancerwithoutgod. I replied cautiously hoping not to give offence as I realised he was in the USA and I assumed, perhaps presumptuously, he might be hostile to atheism. Anyway below is his generous reply. I have no great interest in the alternative treatment he linked to and clearly his friend chose the transplant route but I found the efforts he went to for his friend and the good wishes he sent to me, very moving. I should not be such a cynical old git.

Hello Chris,

Not offended at all, atheism is on the rise in the US but its
still a minority, last I knew it was somewhere about 15% who
don’t profess to a religion in these parts. I was raised a
christian upbringing in a rural area and moved to a city as soon
as I could, I then thought atheism was the way, any more I think
of myself as agnostic anymore.

I noticed the error message you was presented with was
mis-spelled, fixed that.

My friend just did a bone marrow transplant a couple of weeks ago
here, she’s doing really good with it.

I went out to see her last month right before the transplant and
I’ll be going back again in less then 2 weeks, we did some fun
stuff together to take her mind off things and just hang out. I
wanted her to look at www.gcmaf.eu therapy which my uncle told me
about, I even ordered her some (next day air on ice from the UK)
and made sure she had everything she needed to do it, but she
decided the transplant route – she had 3 really good transplant
matches on DNA, so it was compelling. The gcmaf therapy boosts
immune systems by 100x, and increases immune
surveillance/response, I’m not a doctor but it looked real
interesting and I couldn’t find anything bad on it. One of her
oncologists is from Europe himself, she let me talk to him, and
he thought it looked interesting also, but he is bound by
protocol, he said she can take it later after her new bone marrow
grafts.

Best wishes on your journey man, positive thoughts and good vibes
headed your way!

With regards,

Josh

I thought it would be a fun/stupid exercise in the spirit of Russell Brand to set out my naïve and undoubtedly ignorant views on political and social reform. I realise I am making myself a prime target for ridicule but I really don’t care. I thoroughly recommend getting cancer if only for the freedom it gives you to say and do things that the healthy have to think twice about. I have spent my whole life pondering the big questions (no I haven’t but anyway) but never had to set out anything in writing. I really have no right to do this because I am fundamentally ignorant of political theory, economics, geopolitics, the environment, capital cities, species of butterflies and dates (who cares) but Russell Brand has inspired me to believe that the voice of the pig ignorant is at the very least more interesting than the well informed. To avoid boring people I thought 10 commandments might be a good format as it has some solid mythical precedents and has brevity on its side. Maybe the likes of my nephews and nieces, some of whom I know to be much more politically in touch than I am can set me straight and come back with alternative commandments. Perhaps we will evolve into a think-tank for the thoughtless.

This emotional need has been stimulated by today’s terrible news that there is another UKIP MP to celebrate (I despair) and the sudden and slightly OTT resignation of a labour front bencher for sending a snobby (anti-white-van-man) tweet. Shame he was merely a football fan and not a member of the BNP as she presumably assumed tut tut – how silly.

1. I find it hard to imagine any long term reform to global political systems until there is an acceptance that reform can only come about once the human propensity for tolerance has been allowed full reign: thus liberal education is the cornerstone to reform.
2. Encouraging tolerance in people should be the key focus of an educational systems. Reward systems based on divisiveness must be eliminated, ie. to do well at something is good but to share the benefits of doing well is better.
3. The notion of material gain at the expense of others, or material gain without sharing must come to be perceived like ‘drink driving’, as a deeply irresponsible and selfish act.
4. All members of society should be given equal rights and opportunities particularly those who for whatever reason have to be looked after. This section of society is the most deserving of support and afforded the highest priority and status by the rest of society.
5. Social strata should be eliminated. All women and men are equal and there are no special privileges to be earned or inherited. As a result stratifying educational systems will no longer exist. All girls and boys will be offered the same educational opportunities.
6. The primary purpose of commerce will be to encourage equality and to improve the quality of life for citizens. Ethically focused societal profit will replace the notion of profit for personal/material gain.
7. Financial rewards will be capped at low levels. In time the ethos of redistribution will be so strong that wealth disparities will flatten out eventually to disappear.
8. There will be a progressive rebalancing of attitudes toward occupational status. Current low status occupations will be afforded greater respect, promoting the notion that all occupations that contribute to societal improvement are equal and are to be rewarded equally.
9. The purpose of be bureaucracy will be to facilitate change when required. The notion of control and monitoring will be sublimated to this primary goal.
10. The presiding legal principle will be tolerance for all. Individual freedoms that may undermine this principle will be deemed illegal. The purpose of the machinery of the state will be to safeguard this principle at the expense of all others.

Things are on the move again regarding my treatment. I have had a lovely holiday from the chemo but tomorrow I have the final test before they decide whether to go ahead with the transplant. This is the test I like least because it involves passing an alarming black tube into my stomach and scratching about for bits of this and that that shouldn’t be there. As they already know that I have things that shouldn’t be there I am not worried about the results but I am not a fan of the process.

One should be aware, for future reference, that anything unpleasant or scary is handled in a particular way by NHS staff. They lavish you with terrifying kindness and concern. Clearly this procedure falls into the scary category because I have already had a comfort call from the hospital ‘looking forward’ to seeing me – the feeling is not mutual. When my cancer news was broken to me I had a consultant plus a very supportive nurse with as broad a smile of ‘don’t cry’ her training allowed. That said I find their kindness really touching so no cynicism intended. Now I know you can breathe with the pipe stuck down your throat – I did not really doubt it but the mad fearful side of my feeble personality still lurked – I am much less frightened. Still there is something particularly gross and somewhat alien about stuff down your throat entering your stomach. It feels horribly penetrative and just a touch prison showerish.

I am still very happy and content and not worried much, but until the decision over the transplant is made I find thinking beyond the fairly immediate unappealing. I am really enjoying my life, family, our cats, good arty things – have a great new book on Jack Vetriano, any technology things, tv, eating (I have rediscovered pies), the New Statesman, reading novels, other people’s dogs, car boot sales (except they are over) driving the car (but not far) and my new passion for poetry (oh dear oh dear). Not nature, healthy food, Tesco, nice views including the stars, cancer films, nostalgia, UKIP, drippy music such as, that terrible terrible movie with terrible music ‘War Horse’, heritage themed architecture (Prince Charles’s views on architecture are moronic) show me a nice coal powered station any day rather than the junk he would have us preserve or worse reproduce. Drinking has also no great appeal because alcohol is probably off the agenda for ever. I have had none since January. I have written 22 poems most in less than an hour in the wee small hours. I publish them to my private website and then rarely correct them. Thus they serve as both a gallery of excellence and a catalogue of errors and bad taste – any other approach would turn this process which gives me such delight into drudgery. I want to reiterate my recommendation of the don’t correct – bluauur it all out! method to all of you with a secret novel in waiting, write, don’t think otherwise you miss the chance to create all together.

Bye for now. Wish me luck tomorrow I don’t need it but I do hate it. What a big baby!

Thanks  to to all those who signed up. Revolution!

https://www.change.org/p/new-era-should-not-become-the-end-of-an-era/u/8717776?tk=Vvpn1GM4_czTHR78KmbdlHO6VosdJqEqtBoaE9GgvXQ&utm_source=petition_update&utm_medium=email&utm_campaign=petition_update_email

Good to see the Poppy thing has caused a ripple of outrage. Shame that much of it has been conducted behind the scenes in e-mails to me – much better to post folks then if you are wrong, which so far you all have been, every one can share in my smug contentment at being so so very  right.

In the meantime support this – that’s an order

Please join this campaign: https://www.change.org/p/new-era-should-not-become-the-end-of-an-era?recruiter=153964095&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Hello,  Russell here

Property developers – in partnership with corrupt, inept or lazy politicians – have created a housing crisis for ordinary people all over the world. I bet your rent is soaring; I bet you are finding it hard to pay – it’s especially bad in cities.

In Hoxton, East London, there is a diabolical situation that I need your help with.

The New Era estate provided affordable homes for ordinary working families (they ain’t that ordinary I hang out with ‘em – some of em are right weirdos). The people that live in the 92 flats have grafted to make their homes their own, installing kitchens and heating and most importantly building a community where all the residents watch out for each other.

Then unfortunately (and I’m partly to blame by moving in and being so cool) Hoxton became “trendy”.

That’s when the old Etonian Edward Benyon (brother of richest Tory MP in Britain Richard Benyon), along with billion dollar American property firm Westbrook, purchased the property. They backtracked on the deal to keep the estate as affordable housing. They have told the families that the rents were going to go up to “market rate” and they had to cough up or jog on. 

Families like Lyndsey’s – an NHS worker and mother of young kids. Her parents live on the estate too. Like a lot of the residents, this estate has housed generations of her family.

But, the people of the New Era estate aren’t going anywhere. They’re making a stand and they need your help, so sign their petition to save their homes.

If the Benyon’s get their way, an entire community will be forced into B&Bs all over the country. They will be sent hundreds of miles away, to places they’ve never been, where they don’t know anyone. Old people who have lived there their whole lives, working nurses with kids, single mums — they will lose all the work, money and love they have invested in their homes and their community.

This is happening everywhere. Boris, their elected mayor (where did he go to school again?), is on the side of the property developers, not ordinary people. The New Era residents have decided to organise and fight back — and we can help them.

If the New Era estate wins, we all win – we get to have cities that don’t belong to foreign oligarchs and corporations, but all of us. Sign the petition now.

Revolution!

Russell

X

Who else finds the rush to be seen wearing a poppy on Remembrance Day a bit nauseating? It has become one of the great British taboos not to be seen wearing one. For a TV presenter or a politician not to be seen ‘poppied’ is probably a sackable offence. It reminds me a bit of a ‘Pringle’ label; something you had have to have in the 70’s if you were going to be allowed to buy a drink at the golf club member’s bar (no offence A & M). The fatuous, sentimental nonsense spouted by some of the media and most vox popped citizens has turned the whole event into a group ‘cry in.’ If I hear one more out of tune last post echoing over the airways I will scream. The competition to find a hero in the family who ‘was in the trenches’ – flash the picture up on Facebook and wait for the surge of reflected glory to anoint the descendants of said hero is pathetic.

We now know the First World War killing methods were ghastly, terrible, shit (It’s hardly a startling revelation to discover that War is bad) – we do this objective acknowledgement no favours by turning it into a state sponsored myth machine fronted by a cool brand that certainly encourages nationalism and arguably militarism. Soldiers don’t die for Queen and country they die because they were unlucky enough to be in wrong place at the wrong time. Their tragic, futile deaths are the result of a societal disregard for common sense. A delusion that things can be fixed by lobbing bombs about. Surely with the combined brainpower of the great women and men of the world we can make the compulsory poppy party a thing of the past (where it belongs).

Church/state/military sponsored symbols encourage simple minded sentiments – get rid of them all! and that should also include our ridiculous monarchy (no office ER & P).

Now if anti-god posts don’t get you going anti-poppy posts might. Let the wave of hatred wash over me.

Love and peace xxx

I am so sorry everyone but as you know, I have taken to writing poetry and it is pouring out of me like gravy. I am sorry because it is such an ‘I am a cancer sufferer’ thing to do, I am really annoyed with myself to have let myself go in this way. I think Clive James is doing the same and I know there are countless others. It must be part of the condition – get serious disease – reach for the pen – gravy. Anyway unlike these here pearls my versification is not for public consumption and is safely password protected from the world. Most of it is dreadful, a tiny part is ok and the occasional word or two is brilliant most important however is it is fun for me, I love it. I actually look forward to sitting down with my iPad, staring into space, thinking of something that sounds good and starting to write. Usually with no idea where it’s going to go.

I used to do this when I was 15. I could churn out couple of verse turners in the lunch break while stalking the sumptuous Cheryl – the girl of my dreams at the time. She looked exactly like M – long dark hair, Mediterranean complexion – fabulous bum – she was my muse – I don’t think I ever sent her any of the poems – I am sure she would have been impressed if I had (not). Instead me and Stephen, yes there were two of us saddos (friendly rivals for her love) would follow her home. We should really have been arrested, she always walked home alone and must have been most put off by these two spotty psychos trailing her like pubescent bloodhounds. Actually we weren’t exactly threatening. The most daring thing we ever did was to say hello to her in the corridor, an event that may well have informed my versification for months. Steven played the guitar (rather well) so he did not need the poetry. Anyway my enthusiasm for writing poetry (after initial encouragement from a Marxist, Messiaen fan, teacher called Mr French – subsequently sacked for subverting the school rules on indoctrination of pupils) was eventually dashed by two events; 1. the emergence of a class poet who was a million times better than me and, 2. a comment from a bastard English teacher call Mr Humphries who reviewed my poem (I was meant to write an essay) on The Wife of Bath as “laboured” – it was the fact that I knew it to be true that dashed my poetic aspirations forever and the fact the Cheryl became pregnant and the ripe old age of 15 and left the school. We all knew who did it – he was very handsome, a monstrous (literally gigantic about 7 feet tall) thug and ended up in jail for GBH. Poor child it occurs to me.

Anyway my muse is now my M – for whom I have written a poem – and yes it mentions her bottom – hence it will not be appearing on this blog.

Other news. I will have to wait until December to find out if the transplant goes ahead. If it does, here are the interesting gory bits.

1. I will have to learn how to give myself injections in the stomach – One per day unless any of you fancy popping over and popping it in.
2. I will have a tube inserted in a vein in my neck (can stay there for a year if required) this will be threaded under the skin so that it pops out, nursing like, somewhere around my nipple.

I promise that these events will be given the online coverage they are due probably as videos.

I have been told my blog posts are a bit long and that they should be on one subject but I cannot think of a legitimate way to round up and round off so I will simply repeat my favourite word of the post – gravy.

I will keep you all posted.

That’s it. Xx