Not all tumours are equal – thank goodness

Not all tumours are that bad. In my case a new tumour has been deemed insignificant and unworthy of treatment. I wonder if it feels hurt and offended. After all, it was trying its hardest to scare the shit out of me, it failed by the way, and then some smart arse consultant deemed it the ‘Walter’ of tumours, a sissy wimp not even worth an aspirin. Hah! Took weeks and weeks to get the results but after the first two I decided that if it was urgent they would have got in touch and forgot about it. 6 weeks – Take That Tumour!

Hurrah !!! The hens are back, but are having to stay behind bars most of the time. They are lovely shiney, sparkly- new hens (feathers to die for darling) so we are hoping they manage to avoid inhabiting foxey loxeys larder for a bit. I admire the farmers stoicism. There is nothing he can do except cross his fingers that foxey is full up, turned vegetarian, on vacation or has been eaten by a hound.

Not impossible as we do very occasionally get the hunt hounds passing through, complete with folk in red coats. They are “not to be messed with” animals. Much bigger than you would expect and quite scary. Enormous bollocks too. Whereas the dogs …. During the course of the hunt they get scratched and bitten to bits giving them a slight misshapen Freddy Kruger look. The last one we came across, who had clearly got left behind or abandoned by the rest, was a bit of a muddy, bloody, wounded wreck – and he certainly did not want a stroke or to be adopted as a pet.

The chicken farmer has thee vintage tractors – all the same make but three different sizes, bit like daddy bear, mummy bear and baby bear. I guess he is Goldilocks. He lined them up outside the house ready for a tractor show this weekend. Bit of a let down to see them dragged onto a trailer to be transported to the show. Apparently old tractors, like old people choke on trendy, modern food – namely biofuels, it gums up their works with a nasty fungus. I had no idea that biofuels were so bio. I must say I am rather envious of his collection but the trouble with old vehicles is that you really need to know how to fix them so my aspirations to own a vintage land rover or even better a Chevrolet, will remain unfulfilled for ever.

I am doing some heavy prepping for teaching in October. I have a large teaching load, we all do, but my modules are very vocational, practice orientated  and largely free of theory, which suits me well. I have always been deeply suspicious of theory, it’s back to my tractor theme. What is more useful, a book on the history of tractors or knowing how to make one? More than that – what is more fun, more creative, more life affirming than making a tractor go and what is more turgid than committing its clunking, gurgling being to nothing but print and airy debate. So my job is to joyfully teach how to build and fix tractors and on the way how to reluctantly and sparsely park them in the broader post-post modernist barn amidst the post structuralist combine harvesters and hay balers. What a load of tosh. Actually when you meet a real theorist who really know their stuff they are pretty fascinating people, trouble is there are so many duff ones. Yours truly being the duffist.

On the advice of Athur’s lovely girlfriend, Lisa I have dumped the name “Marge” from my phone box. My Aunty and her bequest is still acknowledged and her photo is in the box but the notion of naming the box and providing a biography was one of those ideas that was really appealing when I thought of it but ultimately only meaningful to one person – me. (And I suppose Marge). To the visitors to the box it was just plain confusing – why ???? Because the voice they hear, after having read all about Marge, was mine and although I do have a slightly camp Australian twang I was clearly not the female Marge they we expecting. It probably began a stream of thought that settled somewhere around pantomime or tranvestisism or most likely Dame Edna. A non sequitur of significant unhelpfulness. Just another mystery to solve and confuse but not clever on my part. It’s so easy to retake opaque mysterious art – much harder is to create art that is transparent accessible and still magical. I think it takes craft.

I have real trouble when it comes to selecting from ideas. I like most of my ideas, in fact I hang on to them even when my guts are screaming ‘let go, let go’. It seems such a waste to chuck them away as you never know when you might run out. I teach my students that they must put their designs in front of users as they develop them, not at the end of the process when it is too late. I really must practise what I preach. Practice v practise??? Of course it’s dispiriting realising your treasured concept does not work, but you have to get used to it.

Oh by the way – Vince, our stray cat, now follows Mitch around like a disciple follows Jesus. He is still terrified of us, but seems to sleep inside the house when we have gone to bed. Mitch and Bobby just look troubled and confused.

BORING POLITICAL BIT – I think the media and Labour Party have got the Corbyn phenomena completely wrong. I was rung by the Labour Party to ask if I would vote for Owen Smith. The argument was that voting for Owen Smith might make the Labour Party electable whereas a vote for Corbyn would not. When I explained that despite being a member of the party I did not care about its electability, the response was a tiny bit huffy. But here is the thing. Why should a party member, such as me, who leans to the left, support a party that ceased leaning to the left after the demise of Michael Foot, and put in power a party that does not do the things a left leaning party should do. In other words we are being asked to support, a name, a habit, a history, a club, dare I say a religion, not a set of real left wing policies. I could not care less if the ‘labour Party’ fell under a number 25 bus. It has had its history, one it can be very proud of, but now the time has come to throw off the mantle of legacies and get on with being something that is truly left leaning in every respect, in terms of its vision and philosophy as well as policies and membership. If that means years in the political wilderness I am afraid there is no alternative. This is a tragedy for those that are in need of compassionate, fair, honest, government but it is a greater tragedy to maintain the status quo just because it is called ‘Labour.’

So Labour Party members don’t vote for the “Labour Party” vote for a compassionate ethos that looks after those that are least able to look after themselves. I rather hope the Momentum emerges as a new party under the leadership of JC and that old/new labour and all those professional politicians, who support politics and power at the expense of vision and change, get jobs in the Sports Direct workhouse they have been subliminally supporting.

Down the tubes

It’s been a busy fortnight of health tests and all is pretty good. While I continue to get worst very slowly, there is no need for any treatment at present and plenty of treatment options down the line including thalidomide ! It seems I don’t have to see any specialists for three months which will be the first time I have not had monthly chats with my mates at York hospital for two years – hurrah in some respects, but I will miss the laughs with my lovely nurses. Various glitches seem to have been put aside – poor kidney function -got better, protein in the wee -no follow up, new/old shadow in scan, been there since the beginning – no change. Of course everything can change but then, so what! Everything always changes. Time to celebrate deliverance again.

The trip to the Royal Free was pleasant enough. While I was there they investigated the shadow. This was a prolonged process as I had two trips down the scanner torpedo tubes. First one was the usual, lie like a corpse, listen to desert island discs and wonder if the gigantic thing that descends within a mm of your face is going flatten you like a Wimpy bar patty. Second trip (a posher machine) involves keeping your arms folded above your head for the duration of another desert island disks. When asked nonchalantly if I needed any help, I retorted with a manly ‘no thank you’ to the the Rumanian gorgeousness who was assisting me. I should have scrutinised the look on her face more carefully. In retrospect it was clearly a “really?” Or “oh yes you do”. Anyway halfway through the next torpedo trip. It kicked in – first a gentle ow! Then a more urgent yeow! Climaxing in a teeth gritting ‘so this is what the rack felt like’ – anyway just as I was about to bale. We reached a gap in the process. Yelling over “Lara’s Theme”, or some such, I had long ceased to listen, the gorgeousness enquired if I needed any help. Yes, I said, hoping for a lethal injection at least, at which point she helped! This consisted of nothing less than her applying her upper body weight to my arms to prevent desperate flailing (I was just about to reach that stage) and keep them in place while the scan continued and as she said (avoid having to start again) . Suffice to say the pleasure of the Rumanian gorgeousness’s robust breast lying across my upper body did not compensate for those last 5 minutes but as she saved me from having to do it again – I love her! It f*****g hurt!!! She congratulated me afterwards, I assume for holding out as long as I did and not moving but blimey who would imaging folding your arms above your head could hurt so much. Note to self – Yoga classes.

A rant:

The world outside my personal bubble of delight seems to be a bit crap. I suppose it’s about fear and, though it’s a cliché it’s true, fear engenders macho arseholes to hate. We are afraid of terrorists so we retreat into xenophobia and thuggery and throw the baby out (basic humanity) with the bath water. The latest Farage poster is disgusting, inflammatory, ignorant and fascist. I don’t find him at all funny anymore. The gay nightclub murder and Trump’s (I have never found him funny) capitalisation on that event, to stoke racist flames, is evil. While we don’t yet know the facts, the murder of a mother of young children, whether a politician or not, is a real personal tragedy. If another politician comes out with the nauseating platitude of “my thoughts and prayers are with the family” instead of saying something truthful, respectful and considerate – arghhh……It is with shame and regret that I have to admit that, I am more worried about my cat (who temporarily vanished) than the state of the world, but still, the least one can do is feel shit about it all and tell people that you feel shit, fed up and angry.. Part of me would like to be the sort of person who really, really cares about the world and its people. That’s not someone who cries about it, I am not even sure that it is necessarily a person who does something about it, some of them are right selfish bastards in my experience.. Frankly there is nothing more depressing to find out that an aid worker in Syria is a complete tosser and a show off (I have). I think the best we can do is pretend well and speak our pretence loudly. Like I have. So good for me.

The Vote

Pragmatism and selfishness seem to be frequent bed fellows and I snuggle up with both but by voting Brexit one is voting for segregation and discrimination and that’s a step beyond selfishness. Keeping poor, so called ‘undeserving’ foreign immigrants from enjoying the product of the U.K’s Ill deserved wealth, (after all it is built on historic exploitation, luck and geography, (have we really worked harder than the average Albanian farmer)) is a form of Apartheid. It is a vote to keep the good stuff to ourselves and let the rest of the world go hang. We don’t need any national borders at all. People live in harmony when borders slowly dissolve, when resources are shared and when the princes, Kings, priests, oligarchs, billionaires and governments are retired to the dustbin labeled “foolish aberrations of history.” Bring it on I say.

I am not a fan of the EU, indeed democracy or government of any kind but I am even less of a fan of handing the levers of democracy to a bunch of people who’s primary motivation is to own stuff, keep stuff and stop anyone else sharing their stuff. I find it hard to believe I might be in the minority. I hope not.

Don’t be a complete pillock vote to stay in.

“and the dead shall text again”

I can’t help feeling like my blogging drive is fading. I am by nature obsessive and I do find it hard to focus on more than one of my current obsessions. I stopped playing my bass guitar for 18 months, now I play every day. I used to put music on all the time in the background while I cleaned up, now I have radio 4, I used to blog every day now it’s once a month. The fact is that my desire to offload angst or outrage or funny stuff has been supplanted by my desire to get my telephone box to work exactly as I wish it to work. I also spend an inordinate amount of time thinking about stuff that I want to do and then doing little more than buying a book on it from Amazon. So time to come clean- What am I really all about? Feel free at this point to say who cares, I am not even sure if I do.

First lets cover a few customary bases. My family are my life and without them I am nothing at all. But I am not going to get all sentimental and appropriate by mentioning them every five minutes just so that you lot don’t think I am the egotist that  I am for sure. So what am I really all about – family excepted?

1. Without doubt a dabbler not a finisher. I enjoy skimming the surface of loads of things but I am too lazy to really dig down and get dirty in any subject.
2. I get superficially passionate about things. I can fixate on a subject and get very involved in it. In the history of this blog we have had, god, socialism, anarchism, various philosophical perspectives, music, poetry, old telephones, computer programming, hens, cats, rats, me, me, me, nurses. I can fixate on a single moment in a performance, bore everyone rigid when I discovered Piña Bausch or Happy Valley. Amazing moment in series two when Catherine and her colleague at the police station talk about nicknames – timing, writing unsurpassed – pure vaudeville.
3. A technical problem will obsess me more than anything. Making something work that doesn’t, will get me up in the morning with zest and energy in a way that nothing else will. I am much more of an incompetent Mr Fix-it than I am either an academic (not at all) or an artist (a wee bit)
4. My favourite toy ever was a Mamod Steam Engine – I still have it. To fire up the meths burner and steam away is absolute bliss. I think it and a white bread bin my grandfather had full of Bakelite bits and old valves is probably as close to the real me as I will ever, ever get.
5. To lie on an old ladder I adapted to have a cockpit, in the garden in Kent and dream about airships sums me up. Technology makes me dream. I don’t need to understand it I just need to sleep with it like a lover.

I have to conclude therefore that my life has been inexorably progressing toward the phone box. It is the perfect manifestation of me. The fusion of technology and dreaming,  Mr fix it and Mr poet. Aren’t I lucky.

My numbers get worse each month. Nothing too drastic but more treatment beckons. Don’t know when or what but as this is inevitable – so what. I would guess it will be in 3 or 4 months. Hopefully get the steroids again. Brace yourself for a stream of nonsense minted at two in the morning. I feel very fine but I must admit sleeping is super appealing and remains super- duper psychedelic.

I have abandoned, I believe with great grace, complimentary therapy. I had three sessions and have enormous respect for the practitioners. I really like Michelle and Clare. It wasn’t for me,  but I am convinced it is helpful to other people. Frankly I am much too screwed up and analytical. I wanted to please all the time and I was desperate to find the ‘holy’ groove or whatever it is, but I never happened. I don’t believe it ever will. As a teenager I was once given a very heavy illegal drug. My body fought for two days not to succumb and I managed to fight all the feeling off. I never ever took anything ever again. Raiki for me was the same experience – I just cannot let myself be subsumed by euphoria – unless that is it comes in a lovely package labeled morphine or temazapan or whatever. Oh what a mass of contradictions I am. Must be something to do with the context in which Euphoria is encouraged. In pain, bring it on – Not in pain – no thanks. Anyway I am not in any ‘pain’ physical or psychological worthy of depriving people who need complimentary therapy from having it. So I chatted for half an hour on why I was a useless participant, ( I was persuaded I was not at all) donated a paltry amount to this fantastic service and left with an invitation to come back anytime for coffee which I will definitely take up. Thank you Michelle and Clare.

Arthur’s album is available now, so I insist you all buy a copy. I think it’s fantastic. Very subtle and musical. It’s great that both my children pursue careers which I can only tangentially appreciate and understand. George writes fiction (never understood that) but adore the fact that he does and Arthur plays Jazz ( no appreciation of that either) but so happy he has. If they were into stuff I was into I would not have the same opportunities to fail to learn about their diverse artistic domains. That said I do understand the generic creative process so when they are struggling to ‘make it work’ I know exactly how it feels. Of course I cannot help.

While at complimentary therapy Michelle was having a surprisingly frank conversation with another patient about what she was planning to do when she died. The conclusion was, rather bizarrely she will send her a text. I jest not.

The next section will interest only the nerds. Actually I hate that term – I like the term engineers.

I have my  synthetic voice processing TTS in realtime on the Asterisk server to a 1940’s rotary dial telephone ready to be relayed to my K6 phone box. I have also synchronised an additional audio channel from Asterisk to Pd using midi protocol as a trigger. I think it’s probably one of the most Heath Robinson fudges I have ever produced surpassing even that produced for my PhD demos but it works! On the journey I have had to pickup just enough Linux, Asterisk, Python and Pd to get the whole thing to hold together. I am rather proud of myself . Nothing to show yet but hopefully the next step will be straight forward . Apart for the incredible generosity of Cereproc https://www.cereproc.com who have synthesised my voice for nothing I would like to also thank Chant for giving a me their software for nothing http://www.chant.net/Products/SpeechKit/architecture.aspxs

Reiki, Trump and not much else

Nothing juicy to report. My blogging follows a pattern- when things get tough or eventful I blog when thing are pleasant and just ticking along I lose interest and go silent.

It’s been a good month. I have been really enjoying teaching. My reintroduction has been very gentle indeed and I have a very small group of very nice students tomorrow they are coming over to the house to see the phone box (digital installation art). I feel liberated by the long break. It now seems quite clear to me how I can best support them and how some of my previous approaches were a load of guff. I have concluded that teaching is about being honest, not pretending you don’t know things when you do (yes I do mean it that way round) and not pretending you do know things when you don’t. Besides In the creative arts you never know anything. Knowing is just standing still, the best you can do is have a go and the best you do for the students is to give them the confidence to have a go.

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I have come to the same conclusion about poetry. It’s a doers thing. Listening to it or reading it is a sort of problem solving activity whereas writing it is like pulling out your toy box while no ones looking and playing with your toys. I am not sure whether I agree with Andy Warhol – thinking  about art is certainly of  no consequence but productivity is overrated and playing is misunderstood.

I have been having Reiki as a complimentary therapy. It came strongly recommended by my beloved nurses so I have been giving it a go. It involves a very light touch massage around the head and face followed by a semi-detached laying on of hands around the shoulders, stomach, knees and feet. I don’t really think I need any therapy but I am trying to prise myself out of the ‘suspicious of anything spiritual’ cul-de-sac. Regrettably I have not been able to reverse out or do a three point turn and in fact have now parked up and am taking Typhoo with the lady in the corner house. My therapist (how coolly American that sounds) says she has never felt so much negative resistance when she lays on hands or rather holds them inches from my body parts (I am fully dressed btw). I try so hard to be obliging and to loose myself in the experience but I am just too screwed up and inhibited. It really is my problem not hers. I really like her and her colleague and I really enjoy talking to them between sessions about OCD, kitchen design and dress sizes but I just cannot abandon the safe places my mind occupies; synthesisers, telephones, bass guitars, TV and breakfast (I have to be abstemious prior to therapy )– so I lay there for 45 minutes trying not to swallow, blink, twitch, trump, or give away the fact that I am meditating on a McDonalds breakfast which is getting dangerously unlikely as they stop serving just after the session ends. I have four more sessions but I may be swapped to reflexology where there is a less of a requirement to show faith and more not to be ticklish. I have a feeling I will end up being put on a therapeutic programme of woodwork after flunking all the ologies and transcendental stuff. Actually come to think of it I would really enjoy that. Talking of trumping….

I am troubled by and fascinated by American politics at the moment. An American ex-student and friend summed it up really well. You may have missed her comment to an earlier posting

Patricia Routh: 1 week ago
It is horrific to watch. The political pendulum in the USA seems to have swung way back to extreme radical right. Even most of the candidates from the so-called ‘liberal’ Democratic Party are in fact quite moderate and centrist. Many of their policies do not differ from Goldwater Republicanism, as there has been a slow but deliberate shift away from democracy and civil liberties to a plutocracy. There is still the illusion of democracy, but it seems both the GOP and the democrats are really on the same team these days..team corporation, team military industrial complex, and not for the people. Except …perhaps Sanders. But does he have a chance? It gives me hope to see all his support though.

The most powerful nation in the world and the nation that elected Obama (a really decent bloke), considering Donald Trump (a complete arsehole) as their leader is a truly boggling step through a black-hole to an alternative and very frightening iuniverse. True it’s only the Republican electorate being plonkers but even so it does seem to expose a very nasty underbelly of bigotry in an awful lot of citizens of a rather magnificent nation. Louis Theroux could not have dug out a more unseemly side to the American Dream, than this man with his ‘big hands’ and his big mouth supporters. I am less concerned than the media are by his hair but I am very concerned indeed about what is going on underneath it. A nasty, mean spirited man with an obscene amount of money. I weep for friends like Patricia who have to deal with the shame inflicted on their nation, still I suppose we had Thatcher and Nigel Farage to endure and live down. Mind you compared to Trump, Thatcher seems like a cuddly wuddly, hug-a-Mexican-hoodie liberal. Let’s hope Trump is a political gift to Clinton or Sanders. Despite my deep enthusiasm for Sanders my reasonable-self supports Clinton – I don’t much care for the dynastic overtones but she is an incredibly able politician and super smart and that is a good start.

Technical stuff for the interested only. I am soldiering on with the next manifestation of telephone box audio art. It’s frighteningly complicated requiring a number of different technologies to work in harmony. I was hoping to have it all working by the time the students came to see it but it is miles off. So far I have been able to dial in from the box to a pulse to tone converter which connects to an analogue terminal adapter, which connects to an Asterisk server on Ubuntu, which connects to my Cereproc TTS Voice , which connects to Pd which produces the number dialled in my voice. Big Deal Eh!

Arghh my hair is falling out!

This morning my bath water was as if I had bathed a woolly mammoth in the mammoth molting season. Most alarming! – sadly to be expected after the last dose of chemicals but I had forgotten! How foolish to have had a trim from ‘Clare’s Mobile Hairdressing’ so shortly after treatment – I should have kept the offcuts and gone for the Elton Trump look. I noticed first because I kept getting eyelashes in my eyes – It did not occur to me that they were dropping like conkers. Intriguingly hair from those areas where hair loss is merely a qualification to appear in what ever the opposite to “hairy bear” films (those readers who do not understand this reference should not Google this at work) remains unaffected. How perverse of the creator to ensure that cancer is publicly but not privately disfiguring. Still got plenty of hair left so hopefully I won’t end up looking like an advert for MacMillan Nurses or a knob head. I don’t think I could bear to be a beacon of pity although looking like an up and coming contemporary composer or media type is worst – they are all shaven headed btw and don’t seems to realise that the bald head went out with Teli Savalis and the black polo went out with Alan Ginsberg.

I am back at work teaching and really enjoying it. Not too tired although the journey is a drag. Working on my next telephone piece as well as prepping my teaching which is focused on the digital arts scene which is right up my street. I hope to get the students over here to look at ‘Marge’ – thus combining the two, it will be interesting to see how they react to something which, in contemporary technology terms, is entirely non-visual.

The band ‘Gravityisback’ (see what i did there) is reforming in the summer and I have been practising my bass playing. While it remains lamentably bad, I can only assume my condition was upon me for many years as my fingers are now more, rather than less, agile and I no longer get cramp. I so wish I was musical like the rest of my family.

I have been churning out a few poems as well. As bad as ever but truly pleasurable – an opportunity to drift dreamily into rancid self indulgence – yes rancid – poetry like gone off cocktail sausages – cheap, short and tasteless.

I believe I am now replete with telephones so now it is just a matter of gently improving on those I have. My criteria is the quality and beauty of the item, it’s engineered purity rather than any issue of rarity. This puts me at a great advantage on the collecting scene. A rare example of a phone I possess recently sold for £800 the one I have cost £30 – much the same in my view just an earlier serial number. I am trying to drag Maria to a ‘swap meet’ in Bromsgrove for the Telecoms Heritage Group. The exhibition of early GPO switchboards promises ‘fun for all the family.’ Do you know I really would enjoy it. I am not so sure about Maria though.

War and Peace is brilliant on telly. The guy who plays Pierre is outstanding and I am very impressed with Lilly James. Clare Danes in Homeland is amazing (the whole series is) and the female leads in The Bridge and Dr Foster are remarkable. All in all telly acting and scripting is fantastic for female talent at the moment.

The American elections for presidential candidates is so depressing – how can a country that elects Obama also be considering electing from a group consisting of the rich and stupid, the self made and stupid, from a dynasty and stupid and the just plain stupid. Repellent people, repellent ideas and a repellent system, where all that seems to count is how much cash you can throw at the thoroughly corrupt TV networks. I despair for those lovely American people I know and work with. Why do we worry so much about extremist Muslims when we seems to a have a large swathe of gun touting evangelical Christians to worry about. For goodness sake world, wake up, we don’t need teams, borders, gods, rules, bankers, governments, or anything that annoys Chris.

Finally something I am good at

My target was 4 somethings over up to 3 days and I achieved 8 somethings in one day!

The doctor said I had done really well. I felt like I had actually won the egg and spoon race at Eynsford County Primary instead of coming second to last (only the boy with permanent conjunctivitous was slower) – and I dropped my egg.

It is so to be recorded that I am a positive superman at producing stem cells. The nurse was right, it did hurt but it was worth it. The best bit is I don’t have to go back again and I can dispose of (I said chuck out but was corrected) all my stem cell simulation drugs and syringes Hurrah, hurrah, hurrah. They have an absolute bucket load of potential me’s – enough to repopulate the Isle of White at least.

The whole process was not too bad actually – at first the pumping bone pain is quite intense – it really does feel as though your bone marrow is being pumped out your backbone, but plain old paracetamol works very well and you get used to it. The blood goes in one side and out the other. The outlet is your biggest vein in the crook of your arm and I must admit the needle is on the big side. Note size of outlet wound compared to inlet wound

image image

The reason you can’t move your arm, as was so vividly explained by the nurse, is that the needle stays stuck in your arm and were you to bend your arm it would pop clean through the vein and out like a friendly meerkat. Luckily in my case the inlet was a titchy little cannula (sp) with a plastic floppy needle thing leaving me free to wave to the crowds or sup tea. Tea is not advisable though for reasons already stated.

The one weird but painless side effect is your lips tingle. This is caused by the machine using up your calcium somehow and is counteracted by some nice fruit flavour calcium tablets – I had 6 in all.

I had a nice lady from Scunthorpe next to me also with Myeloma and also with the same pounding pain. She had thought it was her arthritis in the same way as I thought it was computer shifting. We talked about her dogs, a border terrier cross that stole the Sunday joint and a Jack Russell that bit the vet, and regaled each other with tales of laxatives.

As ever the care was exemplary with one nurse assigned to each patient. They have to tweak the machines, which look and sound like very high tech twin tubs, in order that the ‘layer’, a very thin layer in the blood where the stem cells reside, is skimmed off by the centrifuge. They do this by peaking into a sort of viewing hole- a bit like a seaside what the butler saw machine – and tinkering with numbers. This continues intermittently throughout the day punctuated with an enormous amount of note taking. I do hope someone reads them. Heres an interesting fact. As you know for any procedure the patient is obliged to sign a consent. My nurse said that in all her 14 years no one had ever refused to sign. Is it just possible that this little bit of bureaucracy is a waste of time and money. Wouldn’t it be easier for consent to assumed unless someone says so.

Anyway a very pleasing conclusion to the day, relayed to me by a charming doctor by telephone at 7.00 in the evening. I am supremely grateful to the glorious national health and all who serve in her. Three cheers – hip hip hooray, hip hip hooray, hip hip hooray.

Oooo that pumping sensation!

Yesterday I thought I had done my back in again. I made the mistake of picking up a computer and moving it to another room and and later I felt somewhat odd. Spent the night awake fretting and in moderate pain. I knew that today I would have to lie still for up to six hours and as it stood six minutes was pretty unendurable. Arrived at the stem cell unit and told them all about it – Lo! It’s a really good sign that the bones are pumping out the marrow stem cells – pain in the back, thighs and sternum – apparently people have been admitted to A&E thinking something has gone horribly wrong – someone please remind me to read the list of side effects properly when I get given a new drug. I don’t do so because my tendency is to embrace symptoms like lost puppies – warmly and for life. Once I was informed the symptoms fell away like the rose petals in American Beauty, indeed the more it hurts the better I feel – Perhaps this is a potential new pain management technique just tell people that the pain is good for them.

Waiting for two hours at Leeds hospital to see if I am ready to go on machine – then no weeing for 4 hours or so – yikes.

Photo on 19-01-2016 at 14.00

now i am all plumbed in and have only one spare hand. i pity those people whose veins are such that they have no free hand at all – cannot scratch an itch for themselves – holding out without weeing ok. the stuff on the right are my stem cells – its going well – 2 more hours

Home with stone age vomit response supressed

I have emerged from my day of imbibing and passing fluids. I must say it was a very pleasing day all in all. There is nothing more relaxing than being cared for and waited on hand and foot with no nagging sense of guilt, after all I could not exactly nip off to Costa – although some hardy smokers are to be seen in the carpark with their tripod wheely things . I suppose I could have gone to Costa but I was pretty embarrassed just walking through the hospital waiting room, like some harbinger of ‘this could be you if your diagnosis is crap.’  The tripod wheely thing really is the ultimate badge of poorlyness even more than a wheelchair in my view. It elicits a kind of – ‘oh God what’s wrong with him, must be really bad’ sentiment. At the most I had two bags on my tripod my friend across from me had four and his had protective black bags over them, like monks hoods – we competed as to whose tripod communicated nearest to death. He won.

The drugs do their work over the next three days basically destroying cells in order that new ones can emerge – unfortunately the primitive part of the brain assumes that you have eaten a mouldy  or some icky stone age sabre tooth kebab and accordingly induces you to puke – not realising that the kebab has been given intravenously and puke as much as you like it aint going nowhere. So I have three days worth of primitive part of brain switch off vomit reflex drugs. I also have to inject myself in the stomach once a day with what the nurse described as a tiny needle. I would count anything longer and thicker than a petite baby’s eyelash as not tiny and this constitutes at least two drawing pins in length and a strand of capellini pasta in girth. I don’t relish it at all. She was worried enough about my preparedness to cope, to suggest I came into the hospital so they could observe me do it to myself. Can you imagine inflicting pain on yourself with a sharp instrument while being judged by a professional panel – no thanks. Anyway first ‘shot’ is tomorrow night. Wish me luck.

A view from the chemo bridge

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This is my view from the bridge. It’s very quiet here today but the lovely chatty nurses keep me company and lavish me with tea and quality street. I also get my lunch here – quite a picnic, crisps, cake and sandwiches – I feel like I am at Charlie Chalks – I am hoping for a balloon at the end “I have had chemo today”.

I am being pumped with stuff for 9 hours solid so plenty of time to blog. Because of the volume of liquid being pumped in one is obliged to relieve one self of it about every hour still attached to all the tubes. I have seen this in movies but never had a go myself. It’s a surprisingly free spirited process. First you unplug a couple of devices from the mains, at the back of your mind is the thought that you might A – accidentally unplug the person next doors life support, B – deflate like a punctured lilo, then you need to wrap the wires around your wheely tripod thing as the alternative is to negotiate a load of tubes and a load of wires like something from Jules Verne with the potential to end up in an undignified sprawl as you slip surreptitiously past the waiting room. Having negotiated a series of doors cunningly not designed for persons bearing a wheely tripod thing you with your voyeuristic tripod wheely thing take a leak or a dump. However during said process the machine that pumps stuff may sound it’s alarm. The effect is an instant curtailment of urinary flow and thus the commencement of a vicious circle –

A little while later – I am now on the the heavy duty poison and feel completely stoned – not bad – very good indeed! I have just conducted an interview with two charming medical students while under the influence – oh dear – I hope I did not go on about God or vintage telephones. Very interesting chat, at least for me. The cyclophosphamide is my usual chemo but this mega dose has produced my usual Lucy in the Sky with Diamonds symptoms – it seems that almost any drug induces euphoria in me – aren’t I lucky.

Something to set the stem cells flowing

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Sadly, I gather that the stem cell gathering process that starts tomorrow does not lead to the potential for a new me – wrong sort of cells. I quite like the idea of popping back in 1000 years time to see how things are going, although what I have at the moment seems unimprovable (strange word) so coming back in 1000 years only to be disappointed that things aren’t as good as they were (arghh what is the future pluperfect historic conditional) is not so desirable. The future will have to make do with my telephonic vocal mausoleum complete with a computer voiced version of me produced by my incredibly kind and staggeringly clever friends at Cereproc https://www.cereproc.com/ . I have yet to realise its full potential, but by way of a demo here is a recording of my voice (recorded) and my voice (computer generated) dipping in and out of a poem written specially for the box (see if you can tell who is who) – just to be clear this is an in progress rough demo (with a number of tech issues) and does not show off the potential of my new toy – but to be doubly clear and for those ignorant of computer generated voices, most of the sentences spoken have never, ever, been spoken by me, they are spoken entirely by the computer reading the text from the screen – impersonating me. Many pauses and quiet bits please listen on hifi or headphones.

As a special bonus you can now see live video from the inside and from the outside of “Marge” here – http://www.fleeting.eu:8080/wordpress/index.php/marge/ if you are very lucky you may see a visiting punter, although spiders are still the most enthusiastic subscribers.

…and as a final offering I have installed an Asterisk telecoms server at home with which I hope to produce some more interactive versions of the ‘me’ voice but for now it just has a test message with a Becketian/Hawkings piece I wrote for two characters with the same voice – Dial 01904 215445 (normal geographic charges) or VOIP 0904 87 290 (no charge) At the moment it will only accept one caller at a time – very early days, very big how-to book.

Please note – all the above systems are subject to complete melt down – the most common reasons being; me messing stuff up or our frequent power cuts.