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!


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.


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