Happy and Cross

I am relieved and delighted to say I have had a very good progress report from my consultant.. It seems the treatment has done it’s job and I have finished this first round of chemo with flying colours. Many of my numbers including liver function are back to close to normal having been far from it pre treatment. He is recommending that I move on to the more drastic stem cell stuff which is only given to patients under 70 (so I qualify as fit enough humpff). The final decision is with the specialist unit in Leeds who will be in touch with me soon. If they say no then I will be given a couple more of the current treatments then I guess I am on my own but I will receiving monthly intravenous bone conditioning drugs for the next two years. All very jolly! We will be celebrating Maria’s birthday and my current state of deliverance on Thursday – hurrah

Meanwhile –

It’s good to see the myth of compassionate conservatism has finally been killed off. The latest proposal by the chancellor to punish the poor, ill and disabled is striking in it’s overt Daily-Mail-readers-vote-winning cruelty. It makes me ashamed to be part of the same human race occupied by such unspeakably unimaginative tossers.

Dear Misguided Tory Voters

Just for once try to think about people who are not like you. Who may be unlucky enough to be ill or out of work, or unwanted, or abused, or living in a crappy area, or depressed, or addicted to drugs, who don’t go on benefits because they want to, but because for whatever reason, good, bad or indifferent they have to. These people are not scroungers who need a good kicking. Sure there are people who abuse the system, but in the same way as we don’t treat every MP in the same way as we treat the minority who fiddle their expenses – remember the duck house – we should not treat everyone on benefits as if they were on the fiddle. Surely we should take a balanced view and treat the honest majority as the norm and build policies accordingly. I find the Tory propensity to come up with policy proposals designed to appeal to the basest tendencies in humankind truly shocking and I find it hard to believe that any decent person would not feel the same.

Love Chris

I have little enthusiasm for Labour at the moment despite once having been a campaigning party member but the alternatives really are pretty grim so I guess I will hold the line. There is no party that gets anywhere close to the kind of compassionate relativism I would wish to advocate. A society organised according to cool headed perspective on the irrational and inconsistent behaviour of human beings. That is non judgemental (in a way that I singularly fail to demonstrate) but prioritises tolerance and compassion for those who struggle, even for those who appear not to deserve it. Favouring the powerful and ‘successful’ may make sense to the powerful and ‘successful’ like George Osborne but it makes no sense to anyone with an ounce of empathy.

I have added a link to the main menu above to HeForShe – check it out and join up.

Ramble on feminism and taking cancer seriously

JB sent me this link of Emma Watson at the UN.

http://youtu.be/v6XTx2Rg04g

I am quite passionate about the need for more women in positions of power. Men are arseholes particularly between the ages of 16 and 24, unfortunately a mental age many men seem to occupy for life. They really do believe that they need to constantly prove how ‘big’ they are – cars, guns, TV sets, jobs, gold, muscles, willies, power tools, membership of extremist organisations, vestments, power, fans, affairs, adventures, operas, PhD’s – pathetic! I am an advocate of positive discrimination but I realise this troublesome to many women. The issue seems to centre on the notion that only genuine merit should be rewarded. But surely the qualifiers for merit are largely set by those same permanently 16 to 24 men. Meanwhile women miss out on the positions of influence because they ‘ain’t big enough’. Let’s just start again. Women only short lists, positive discrimination and an obligation for a progressive move toward the compulsory even distribution of women in positions of significant influence. Hopefully this would lead to a more even distribution and true equality across the board.

The end of my first week back at work and I feel great. I have not had to venture onto campus yet, there is so much I can do electronically. I suppose the cliché is true that on re entering normal life my perspective has changed. I certainly feel much less inclined to get hurt or frustrated by the inevitable fussiness of working within a large organisation. Actually I am lucky to have been cocooned by the luxuries of the public sector – so different from our previous experience when we were both freelance and tumbled into debt within weeks of M’s diagnosis. Happily all that is in the past and that pastness is an important additional perspective on the current nowness of my particular circumstances. The fact is you get used to it. I read an account of a teenage cancer ‘sufferer’ (can’t think of another word) – patient, victim….ugh – anyway she said that she had not taken her condition that seriously. I know what she means – I don’t really take mine that seriously, it doesn’t seem necessary because everybody else does. Sometimes I am surprised that the people I love are worried about me, because I am not – but I suppose it’s rather insensitive not to realise that cancer is not to be laughed at. M pointed out that I am prone to believing only I know how I feel. I present a narrative based on a mix of what happening and what I would like to have happened. It’s not that I make stuff up but I have a strong and tiresome sense that only I know how it really is and everyone else is just wrong. Must stop doing that.

On Tuesday I will find out what the next step in my treatment is going to be. I am rather hoping for more of the same as it seems to be very beneficial but I gather there is a limit to it’s effect and at that point it’s not worth continuing. It’s all about light chains, whatever they are. Don’t fancy the bone-marrow autograft at all but that’s more because I am feeling good at the moment and it will definitely make me pretty frail for quite a while – still we will see.

Meanwhile I am very happy with my lot. Plenty to do, plenty to think about.

After an initial burst of creativity I have been very preoccupied with technical issues which I find rewarding and fun to take on and try to solve for example – I am very annoyed by the company that hosts my research website who have chosen to suddenly withdraw all support for WordPress sites – so now I am trying to figure out how to clone my WP site to another host – not a trivial operation. When it’s all configured I will send a link and you can all check it out – bet you cannot wait!

Depression – not afflicted but I am sympathetic

I can so easily imagine the pit of depression some people must fall into when confronting cancer. I can equally imagine the pit of depression some people must fall into when confronting something many of us would find trivial and easily dealt with. I don’t think it is possible to make a judgement about someones depression based on what caused it – i.e. a good depression is one with a just cause – like cancer. I am certainly not depressed – rather the opposite actually but I was drawn to this BBC Radio 4 afternoon drama (available for another day or two) – not just because it seemed to be honest but also because the mode of expression speech, poetry and music is exactly what I am trying to do in Vent. The main character (I think based on a real life experience) has reason to be depressed and the poetic musical expression of it seems very well judged. I have captured just 2 minutes – if the BBC want me to take it down they only have to ask. I really does not reflect my state of mind – if it did I don’t believe I would have listened to it and certainly not enjoyed it.

http://www.bbc.co.uk/programmes/b04gvw1t

“A depressed man and the sofa that sorted him out. A true story of illness overcome written and performed by Andrew Fusek Peters, Polly Peters and Rosalind Jana Peters. And a sofa performed by Lorcan Cranitch. With original music by William Goodchild. Who needs a Freudian couch when you’ve got the most comfortable sofa in the world? Producer: Tim Dee”

Tandem Ride

We ventured out on the tandem today. Not that far, but exhilarating even so. Just to confirm my current state of wellness has plenty to do with my incredibly supportive and loving family particularly M, a great deal to do with our wonderful NHS and all the oncology/haematology teams in York District and The Royal Free and absolutely nothing to do with bravery, determination, courage, will-power, a positive spirit, the spirit of any kind, any god, any belief in anything… – it is a triumph of care and science and the best exercise of HUMAN intelligence – and DRUGS. I worship GSK (shame about the corruption but then the worshiped do have a tendency toward corruption.)

Phased return to work

I am starting a phased return to work at the University of Hull on September 22nd. I am delighted to be back in circulation but will not be on either campus very often. My chemotherapy will continue twice a week for the time being and there may of may not be a bone marrow autograft scheduled in the next few months. As a consequence the university have kindly agreed that where possible I will fulfil my duties using e-mail, Skype and telephone and avoid the 100 mile round trip in the car and the risk of infection from exposure to coughs and colds while my immune system is impaired. Initially I will be focusing on catching up with the various projects and tasks I have neglected over the spring and summer. I will not be seeking to take on any new projects for the time being. Please feel free to contact me by e-mail and I will endeavour to get back to you as soon as possible. My hope and expectation is to be significantly fitter by early 2015. I write frequent very self-indulgent and opinionated posts on my cancer here on my blog at www.cancerwithoutgod.com and will be updating my research site at www.chrisnewell.eu as soon as I have more to say. I would like to thank everyone very much for their kindness

Only science matters apparently

According to the latest ‘chart’ of the top ten universities it seems that only science counts. MIT number 0ne, Imperial number 2.

“As a template for success, it means that the winners are likely to be large, prestigious, research-intensive universities, with strong science departments and lots of international collaborations.” http://www.bbc.co.uk/news/business-29086590

And there is a lot more financial support for science research likely to include  international collaborations. So the die is somewhat cast.

Arts and Humanities Research Council budget – typically £100M

Engineering and Physical Sciences Research Council budget – typically £800M

(I have not included the Economic and Social Research Council or the Medical Research Council both of whom have a science ethos and add to total of science funding in the UK)

So it follows that the arts are increasing disadvantaged and bullied into collaborations either with business or with science – where we sell our souls – usually quite badly – and here’s me a champion of interdisciplinary – still I do get annoyed – even from my relatively pro arts/science collaborative position.

Come on you poets, opera buffs, embroiderers, landscape artists, taxidermists and ventriloquists – time to stand up for the beautiful, life enhancing, irrational folly that is art – at least lets get some actual music teachers in state schools not the IT person who who can boot-up ‘Sibelius’ (notation software)

Sign up here http://www.change.org/p/nicky-morgan-deliver-the-government-s-promise-to-give-every-child-the-chance-to-learn-an-instrument?recruiter=89708902&utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition

Jenny Diski – A Diagnosis (extract)

Thanks to PB for this link – http://www.lrb.co.uk/v36/n17/jenny-diski/a-diagnosis

Two short extracts below –

“I had been formally inducted into Cancer World. (Mixing my metaphors, I’m afraid. Which should it be, the theme park or the lack of variety show?) I was handed my script, though all the lines were known already and the moves were paced out. There are no novel responses possible. Absolutely none that I could think of. Responses to the diagnosis; the treatment and its side effects; the development of cancer symptoms; the pain and discomfort; the dying; the death. Do I have to start a campaign? Wear a badge, run, climb walls, swim inordinate lengths, dance the tango for a very long time, in return for money for cancer research? Whatever that is. Does the money go to the drug companies? To university labs? To Jeremy Hunt? What is this crowd-funded research, where is it happening? Am I going to appear calm in the face of destiny? Actually cheerful, with people saying I was wonderful? Should I affirm my atheism or collapse into religious comfort? Or should I turn my face to the wall? And when the symptoms kick in, will I suffer in silence, quote Epictetus and Marcus Aurelius, or will I refuse to go gentle and make an almighty fuss (‘Excuse me, I’m the cancer patient here!’). Dear God, not a bucket list? Really, there is nothing that I want to do before I die, except perhaps just lie back and enjoy the morphine, daydreaming my way to oblivion.”


 

“Another f*****g cancer diary. I think back to cancer diaries I have read, just because they’re there. You don’t seek cancer diaries out, they come at you as you turn the pages of magazines and newspapers or thumb through Twitter and blogs. How many have I read? I can’t remember, but they’ve spanned decades. I recall Ruth Picardie, a young woman in her thirties, with small children. John Diamond, married to Nigella Lawson and dying stylishly. Ivan Noble, a BBC science and technology writer; Tom Lubbock, art critic; Susan Sontag, although not exactly a diary, mined her cancer for a famous essay about the cultural nature of illness. Those stood out, they were all professional writers and most wrote their diaries as occasional or regular series for newspapers or online blogs. Can there possibly be anything new to add? Isn’t the cliché of writing a cancer diary going to be compounded by the impossibility of writing in it anything other than what has already been written, over and over? Same story, same ending. Weariness.”

Jenny Diski – A Diagnosis (extract) – [my fruity language mod to avoid being trashed by e-mail moral guardian systems.]

Diski and I share pretty much an identical attitudes to the drama’s we find ourselves cast in. I particularly enjoyed her account of her inability to say the right thing to a relative sitting shiva.

Bloody eyelids and good news

3:27 am back on the beloved steroids I feel like John Lennon on LSD ready to record Sgt Pepper – so here we go.

image

At the moment I look a tad like I have entered a new transgender mode, have attempted the application of a poor choice of burgundy eye-shadow before rushing for my bus to take me to my next appointment at the clinic.

These are my cancer eyes. The red marks you can see on my eyelids appear from time to time to time like semaphore signalling to me ‘don’t get too smug you have cancer’. In fact to be strictly accurate they are probably my amyloidosis eyes. Michael York who also has the disease says he can only take acting parts where he can wear dark glasses as he has the classic panda eyes that’s associated with the disease, a dark shadow all around his eye socket. Mine look worse than they are, cause me next to know discomfort and so far at least have come and gone seemingly without rhyme or reason.

Similar unwelcome and erratic visitors appeared right at the beginning of my treatment. I did not share this before as it seemed a bit gory. Basically I bled – I bled dramatically from a tiny wound right through my pyjamas, by teeth bled copiously like Dracula, I had blood blisters in my mouth, I had blood in my wee and blood from my bottom – a few blood spots above my eyes seemed trivial. Non of it bothered me much and most of the leaking stopped once the treatment go into it’s stride. I have no idea what caused it but it felt like a last desperate bid of some enraged cells to finish me off before my drugs finished them off. Anyway now I look a bit more like Scarlett Johanson  as  my eyeshadow begins to pink out and soften.
image

I saw my consultant yesterday and the news is all good. My numbers are improving, some quite dramatically such that this may be my last cycle of this chemo as the maximum benefit may have been had. I may then go for a consultation in Leeds  to consider the bone marrow auto-graft. A decision on this is complicated by the Amyloidosis which may make it  a less viable option but it will probably go ahead. I get a new regime of chemo to reduce the cancer to the lowest possible level, then they harvest my stem cells, freeze them down ready to be re grown once the old bone marrow has been destroyed. That’s the drastic bit 3 weeks approx in hospital followed by 6 weeks recovery and have to be very mindful of infection. Still it seems it can produce really good results with long periods of remission lasting years. So I am very cheerful indeed.

I have requested a phased return to work with immediate effect – there will obviously be an interruption for the  auto- graph if it takes place but I don’t want to hang around waiting and my consultant says I am fit enough. So we will have to wait and see on that. I certainly hope that after Christmas I will be able to almost fully re- engage but it won’t involve teaching because of the risk of infectious students coughing all over me.

A returns to Guildhall on Sunday with all his stuff courtesy of M’s wonderful bro – he then goes straight into a gig performing a new musical at ‘The Space.’ He will be living in Stratford in East London with 2 mates. G and A are also moving to their own place in  Norwich with just one other friend – place as yet to be found – I have been privileged to read example work in progress from both of them and M and I were truly knocked out!  M is back teaching and one of her pupils has got in as a singer to ‘Tech’ which is a real feather in the cap for them both.

So a steady return to something like normal is the order of the days ahead.

Ta ra

Betrand Russell’s Liberal Decalogue

  1. Do not feel absolutely certain of anything.
  2. Do not think it worth while to proceed by concealing evidence, for the evidence is sure to come to light.
  3. Never try to discourage thinking for you are sure to succeed.
  4. When you meet with opposition, even if it should be from your husband or your children, endeavor to overcome it by argument and not by authority, for a victory dependent upon authority is unreal and illusory.
  5. Have no respect for the authority of others, for there are always contrary authorities to be found.
  6. Do not use power to suppress opinions you think pernicious, for if you do the opinions will suppress you.
  7. Do not fear to be eccentric in opinion, for every opinion now accepted was once eccentric.
  8. Find more pleasure in intelligent dissent than in passive agreement, for, if you value intelligence as you should, the former implies a deeper agreement than the latter.
  9. Be scrupulously truthful, even if the truth is inconvenient, for it is more inconvenient when you try to conceal it.
  10. Do not feel envious of the happiness of those who live in a fool’s paradise, for only a fool will think that it is happiness.

bertrandrussell

It originally appeared in the December 16, 1951, issue of The New York Times Magazine, at the end of the article “The best answer to fanaticism: Liberalism.”

Pain is to be avoided and how important is it to be really committed to anything?

I am lucky, very, now that my cancer is being controlled, any pain I had, which was always superficial, is pretty well gone. It’s only in the last three years that I have experienced physical pain of any magnitude at all and I sure don’t want to do so again. One painful incident marks the only time I have formally complained about anything and occurred in A&E when a thoroughly objectionable nurse (yes they do exist) decided that I was fit to be straightened up to sitting after injuring my back. I was elevated from prone in approximately 15 secs, screamed in agony all the way up and turned green. His comment while conducting this process was a sarcastic “it helps if you breathe” followed by an amused chortle. If aliveness has any point, then the point is surely the avoidance of pain like this and worse. (If anybody out there knows, I am sure this is a known philosophical position probably extolled by someone significant.) Everything other than the avoidance of pain is by comparison, trifling. I am talking about physical pain but that’s not to devalue all the other types of pain we seem to be so finely tuned to experience.

I am quite troubled by this bit of self discovery as it leads to a contradiction, that unlike most contradictions, welcome grit to any rounded individuals world view, is quite hard to reconcile. That is – avoiding your own pain is the only worthwhile purpose for life but that implies a commitment and commitments are like commandments, likely to be delivered by middle-aged patriarchs with moustaches and black frock coats. Before you know it some idiot has written it down in a book a peddled it as the word of god.

In one of my previous posts I was keen to emphasise how much I treasured the idea of ‘Can’t Give a Shit.’ The notion of not committing fully to anything and recognising that most of the time one is engaged in avoiding having to think too hard or do to much work, actually avoiding pain. It’s lovely and noble to watch unmemorable telly, drink wine and go to bed feeling full of nowt much. This struck me as a truly virtuous state. Virtuous because it cuts through all the smoke and mirrors, do-goodie, holier than thou, do something with your life, contributor, cancer coffee mornings, big society bollocks that has emerged as a middle class way of masking rampant greed. Do nothing, contribute nothing and be proud to say so! By so doing you will feel a lot better about your £11.00 a bottle wine habit and despite the scorn that will be directed at you, secretly, your new enemies (the contributors) will know that they are undone, that you have called their bluff, stripped out the quadruple glazing with associate Christian Aid stickers and revealed them as scroungers, just like the rest of us, hanging around soaking up resources which could easily if we had even half a mind to do so, be redistributed to help those in pain, avoid it. At the moment we spent a pathetic £137 per head on international aid per year, an alarmingly high proportion of which is spent on consultancy. Most if us in AR could contribute a lot more but we won’t. Not unless we have to. Having to is not an unreasonable requirement but we persist in electing mealy-mouthed mediocre minds that have not got the guts to make us pay more. At least the Green Party seems to be heading in the right direction.

Green Party homepage

So to conclude this rant – vote for a political party that does not single out scroungers as Romanians or people who live on council estates in Birmingham – vote for a party that includes all the overstuffed Tesco trolley pushers, that’s me and everyone subscribing to this blog, for similar abuse – bring down the Daily Mail, get rid of the Bishops from the House of Lords, support the ‘Occupy’ campaign, dismantle faith schools, nationalise the utilities, and tax, tax, tax. Meanwhile check this out

http://www.chomsky.info/books/state01.htm

Love and peace

Chris