h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I think I was a bit more attached to my brain than I ever really credited.

Its amazing what you don't realise you've got, until its gone...



I keep getting phrases, words wrong still, sometimes; though now really it has to be for some extra-reason; Like i'm particularly tired, haven't eaten for ages, or really desperately need a hit of drugs maan.

anyhow... what was the funny one I did earlier.... ahh.

I think I was after the phrase;

"May pole".

and I got to somethig, not entirely disimular too;

"April stick" I . kid. you. not

very. odd.

My brains useless.
taken me weeks to finally get somewhere with this new Ipod thinggy I bought. - odd thing is, once past a certain point with it, its like I get to default working with new tech, and despite having never used an Apple thinggy before, it sort of all then goes smothly.

really like the touch screen keyboard on it, better, I think than on Android.... no idea why... (don't forget for me, possibly also tied in with how I use the screen differntly on each, with a differnt screen reader thinggy).

Went into town earier with William, before he went home.

talked to the local candidate for the Greens, outside Waitrose.

due to the ribbons in my hair, I expected to be used by any random passers by as a may pole/april stick, at any moment, but, although it didn't happen, a random woman in the street, enquired about the ribbons in my hair,

So I had to explain.... one ribbon... one chemo infusion I think she actually thought W and I were in fancy dress nah. love. we dress like this all the tine. which... of course... we do <laugh

I can't imagine life now without my handbag... its so* useful. full of drugs, mobile phones, headphones, nail files, lip balm/butter, nomisturiser, purse, lose change, wallet, keys, drugs, snus, etc <laugh


ate tons of food for diner. can't seem to feed the steroids enough today.

massive bowl of pasta, cheese sauce, 6 sausages, then two yogarts, snickers bars,

I'm still hungry. tempted to go eat teh other half dozen sausages for supper, before long

and my heads funny... odd... funny... not funny haha.... maybe some of that too...

so tired. can't think. but, can think. sort of there... but not there...

Its kinda odd.... looking in at the inside, from outside, into one's own mind, as it... just doesn't work right... and... realising well enough that it isn't working right... but, not being able to work out why or what isn't quite right err... if that makes any kinda sense

Seems. virtually 90% of the things one does, are basically on autopilot which is kind auseful.... in some ways... but... does make me wonder about free will really... I mean.. all this stuff, its just... working, but... so isn't... yet... it is... so...

None of it seems real though,... which is probably not very helpful.... its all... too out of focus... fuzzy round the edges.... just like at any moment, you know some spandex clad guitararist, is likely to abail through the windo, and start a barrage of indesipherable phrases, and slogans, and sayings and before you know, it, you've got a gang of cross dressing hencemen in the doorway, tapdancing the musical hits,

adn, I think we all know, its a short step from that, before you feel the spandex-clad guitartsts, guitar, contact the back of the head or.... so I've been lead to believe.

Once, when the carpets went away for the weekend, we dug a tunnel.

there wasn't any rhubarb at all inside, which really wasn't what one would expect, if one was expecting rhubarb. Which, afterall, I guess, just goes to show, one would be best ot expecting rhubarb, especially if there is none.
The carpets returned filthy of course. They'd spent their time scraping oil of the sea-birds.
I often thought it'd have been nice if they'd just bought back some stick of rock, or maybe even a gannet.

a gannet made of granite would be kinda good, so long as you didn't stub my toe on it. or yours, of course, if your sensative to such things.

I'm tired.
I'm not tired.
I can't sleep. so tired. but. so don't know what to do.....

think I may go have an epic bath.... after some more tea... of course

William is at his, until Wednesday... hoping he might stay over Wednesday night, ; he's already planning on staying over Thursday.
I miss the cuddles. when he's not here. they're the only tink that helps.

I spent hours the other night, laying on the sofa, in his lap. whilst he stroked my hair, and just touched my back, etc, (oi!; we were fully clohted). but at least I've my teddy's.

Especially Bee.

i hug and cuddle her a lot. she's not well. I have to comfort her. a lot.

Must go get a cuppa tea.

Cool old Guy getting stuck in the rolled up carpets
"And something about rhubarb and stone gannets.


Better go playing with the rubberducks "

Pretty good summary actually! my brains... just... so mush right now! - I think this cuppa tea..... then a hot bath... then some cuddle time with my teddy b bears, and maybe some playing about again with teh Ipod thinggy, might be about all the excitement my brain can handle for the rest of the day and... well... random sillyness on twitter and HooToo. obviously I think the carpet was a red herring, BTW: the rhubarb may have beenn a red herring too... not at all sure about the grantie gannite.... though

Cool old Guy trying to twist the twong tister
"granite gannets "

well uncovered. between my useual rather rubbish touch typing, my attritious speling at the best of times, and now, my inability half the time, to remember even the right word I'm actually aiming at <laugh< plus; my fingers being still a bit rubbish thanks to the side affects of the drugs, screwing up my sensativity/feelings in them Its a supprise I hake any kinda sense at all thesedays.... err.. i am, of korse, assuming I am still making any kinda sense at all I'd honstly not notice if I weren't I think

Cool old Guy calculating
"But that is the point, just do not try to be serious as we all know that would be the biggest mistake of all.

It is like Wonko living outside the asylum inside as what we would see his house. Insanity is a graduate process you can not rush it.

Just been visiting the Manchester Pub you have all been attending last year The photos and the meet conversations

I mis the chatter of the ACEs in the background. wonder if they will ever come back, or rather how long they will manage to hide behind the wall ing. Reminds me of the Zaphodista movement right after the move to the Beep. See if I can find < A528617 > Alices restaurant by Arlo Guthry or this version by 'taliesin' "

MMM... the Manchester meet last year! seems... to me... a lifetime ago... I was... so so so happy.... for various reasons right then that.... was like May or something I think... that was so <smiley. times for me, then Through into August, and then after that.... thinks kinda went downhill.... but... MMMM.... just having memorys like that...... to aim for .... can.... oh.... somewhat focus the mind on seeing where i .... oops. nearly used the word 'wan't, when i mean, 'will' be.... in...... ahh. screw it. I've no patence whatsoever... by Christmas... hmm. nah. actually sod that. I've relaly got no patence.... fit/healthy, and.. <evilgrin. by August coming I reckon... Or my name is not Sabrina the Cat. and, sometimes recently, my name has been Sabrina the cat

if only I could sleep occasionally. so tired.

I have just been listening to Richard Wright's "Night Of A Thousand Furry Toys". Thought you might like to know. Now I shall go to bed. Good night, World

OO... not sure what that is... mind, I've not enough concentration for most things right now. even a 30 sec slot on the news can fail to register properly, and be too much concentration. filling the 22 hours or more I'm awake a day is no easy when I can't een listen to a half hour radio drama and be able to concentrate on it, or listen to an album of music I really have no clue what I'll do if this ends up being perminant It snot sustainable I fear for long

Just made a cup of tea, and cleaned up kitchen after lodger. then steralised, in lew of wanting to go make a little supper (of all things, it helps most with nausea).

whilst drinking teh cup of tea, lodger went back into kitchen, and did something. sounded lie used at least one drawer and cupboard (I'd sterlaised them), and the worktop.
s o I gave up on idea of making supper. I've no energy to go steralise it all again now. so tired, wish I coul dsleep.

Your lodger...

What a

BTW... I know you don't watch TV, but I picture Kevin Twine in Derek as your lodger.

http://pbs.twimg.com/profile_images/418152138792251392/RLxZvtF4.jpeg

He's a complete.... anathama (err, I know I've spelt that word wrong, and I'm not even sure if the word I'm trying to spell is the right word, or actually means what i think It means, words confuse me so much now. I can't useually find the right none. or the one that means what I want it to mean),

he's.... odd.

Quite probably the most intelligent person I've ever known, Whitty, funny, generally god humoured, very down to earth in most ways, utterly not racist, homophobic, or any of that stuff, but... just so weird.
In some ways he's just got a total blind spot for 'other people', its like they don't exist... I ... can't understand it at all; other people are always to me, more important than any concerns regarding myself, and my own ... whatever... just how I is... I guess, he's... I dunno. I just ca't get it, and I've know him, like... what since about 1997 I guess... or 98... err... think back then...

Sort of feel sorry for him in so many ways, he's just so... removed from 'other people', in so many ways, kind of ... dunno... its odd...

I'm just so tired right now. but I know I'll be if I get more than an hours sleep tonight... just 'feel' that's where my body/mind is going... yet again there is no solution to make me sleep, I'll not try any more sleeping tablets, after the halucinations and panic attack, and anxiety I got from the last lot,. that was the most terrifying thing I've ever experienced in my life. and it lasted though deminished over a couple days.
Anyhow, the docs don't pay any attention when I mention i don't sleep.
They don't believe me. I think. when I say I don't sleep, I do often mean exactly that . often 80 hours plus no sleep, I don't think its good for me,

Its particularly affecting my hormonal stuff, the endochrine thing, which they are also refusing to do anything about, even though its the main thing now i think making me ill. - I'm trying my best to regulate the not being treated stuff by just eating and it sort of helps, though I'm getting horribly fat which makes me feel rotten, and ill, and makes sleeping even less likely in some ways, and probably doesn't help the muscle and joint pain.


I was right though, the cancer thing was a piece of cake. its all the other rubbish thats gona be the .... well, and maybe the chemo side affects that might not pass. lack of congnitive function, no energy, reduced muscle whatnot, and changed hormonal stuff, as well as all the autoimmune stuff I may or may not have

getting a bit bored with it, really. I need to talk to some of the medical people about it, but my brain isn't up to doin git. and I can't seem to explain to anyone well enough for them to get it either but. another .... few weeks the chemos over... then I might get some thinking back... I hope.
then I can decide about the radiotherapy or not. - kinda not fancying idea of more long term stuff, just for a 'make sure', but it depends on the details I guess. and by then i'd kinda like to be thinking enough to go kill the doctors over in endochrinology until they agree to do some actual tests on me. and talk to me. depends I guess... but I've got to be well enough to do that, as I can't do it if I can't think. and I'll have to work it all out, they're just useless at that themselves.

So wish I could just sleep though. the treacle just gets thicker day by day. mind, I can distract myself with the cramp.

hmm. should have had abath earlier. cramp now from my neck down to my ankles. both sides. its some concentration to convert it to colours, to disapate the pain right now

i think I need another cuppa tea. its the most powerful drug known to humanity... and... to whatever branch of lifeform i belong too I think I might have to go to the pub this week... I need.... to get out.... even... if... I

'll so regrette it afterwards hmm. actually not quite sure I could stomach any alcohol.... ATM

Notes...


I've been seeing several doctors myself lately. And what I've recently done is have notes with me when I go in. I used an android app, Evernote. I can compose the notes on my computer and read them from my mobile. I went through all those journal posts regarding my and 6th nerve palsy since 2004 and translated them into Evernote so I could tell the doctors all the pertinent details and time periods. Yesterday I made a note of all the drugs I'm taking as that has expanded to the point that I need notes.

Start a note and then whenever you have a bit of clarity or just whenever something crosses your mind add it to your note. Then when you get in the office, you won't need to remember to ask or remember things.

We tried that last time. William had a big written list. (its just easier).

So. they decided not to even give me a consultant to see. and there wasn't a point in mentioning anythin;g she didn't even know what my 'bloods' were, so I've still no idea just how neutropenic I am right now (how ultra cautious I need to be about infections etc)

I kinda need to do some ass kicking next time, or at least some 'hello this is me, in a really P-ed off mood. now your gona have to deal with me', and ... they've only had my happy silly bouncy side ... I.E. 'me' so far <evilgrin. but... that's so dependant on how I am on the day, energy, cognitively etc I hate being ill. and not being able to think.

of course, a lot doesn't help I've no clue who I am ment to be taking certian things too, there, or even who my medical 'team' etc, actually is. they told me all that stuff, when I was still a zombie just out of the neurology ward, after the fun and games of all that shabang...

Still think it kinda amusing I was sto utterly out of it, when i signed the consent forms.... all I remember is getting a fit of hysterical giggles, when they mentioned the final 'side affect'.-----

"death".


strage thing, is, I kinda recall those sideaffects being red to me by one consultant... but apparently it wasn't, it was a differnt one... I did sign though... I think... well, guess I must have I can't recall TBH

Mind, still a bit mythed at the side affects they never mentioned.... I mean... yeh, hair loss... they mention that.... infertility they mention that.... all the other stuff... bleh bleh, short term, nausea, etc., etc., but... they missed off an aweful lot of.... things which as long term stuff, I'm really not overly happy it looks like i might have/get

but... whatever will be will be things that once worked one way.... seem, in me at least, to just find an alternative way to work, eventually, and ... already have in a couple of... very odd regards

Of course, doesn't help not recalling all that initial stuff, as I'm not sure half the stuff i'm ment* to be watching out for, or informing them about or... stuff Its an odd setup in some ways... they bash you with ten thousand bits of information, from twenty differnt sources, and groups, and 'sections', etc, at the same time, at the point when your in no state to take any of it in, and then never tell you again and by then you've not even got a clue who it might be you'd ask were you to then want to know

but.... things... may... certainly end up with a lot more weird in the future... than anyone thought possible... least of whom me

and... yet... if I could just sleep... and think proper think I might have a final cup of tea, then lay awake until 6 or 7 AM, before getting up and doing lodger's washing up, cleaning the kitchen, then steralising. sleep would* be nice though

OK. right. brain is really stupid tonight. it needs to shurt up... its not being helpful... and... gona have a final cuppa green tea, then take myself, and my teddy bears to bed.... they're needing cuddling as... am I, I think W will be here for proper cuddles... day after tomorrow, so I can take care of my teddys in the meantime... Bee has been so ill... I have to cuddle her a lot, and comfort her I'm going to make her well again though... she'll fly soon... and she'll be so happy... poor bee...

Have a set of notes anyway. Better yet, include a set of demands. A short list of things you need answered or addressed and don't leave until you at least get someone to acknowledge them.

As to the first post, I think it was one of your more coherent ones - so don't worry about your brain not working. I loved the thing about the rhubarb in the tunnel which wasn't there because the carpet was cleaning oil off seabirds, which, in its way, was also coherent.

How about just recording your consultant sessions on the voice recorder of your phone or whatever. You could ask the consultant's permission. If I were a doctor I'd be pleased if more people did that - I'm sure no one ever listens to their advice, or if they do, they remember it wrong.

And I can't imagine that anyone is compus mentus when they sign consent forms. I know I never was.

I should have made myself a bit clearer about those thousand furry toys. It's a piece by Pink Floyd's late keyboardist Richard Wright and when I saw the title I pictured you lying in a bed the size of a meadow surrounded by all your fluffy little teddies

After listening to Pink Floyd's latest I decided to have a closer ear at Richard Wright's solo work. I've found two cd's and a vinyl.

I hope it's a good sign you haven't posted for hours, meaning you had hours of sleep

thanks. everyone. for putting up with me....

Oh... yes I think I slept!;

sadly... the main way I know this is just by how stiff I am today!

I am so lucky though.

I've a strange relationship with my body. pain. and stuff.

I just got an amazing pain.... sort of in my back of my neck/base of the skull..... - TBH: its probably actually just my back full stop, sending it to make it feel like its there.... though there is quite a bit focused on the back of the skull

So... weird... just moving it aabout..... and it was a really odd sensation too.... such a strange mix of aching, with stabbing

I got a bit boared of it in th eend, and sent it off to my right shoulder, where, its disapated into the colours purple and red, and I think pretty much vanished actually.

which just leaves the regular background aching and stabbing pains which... are.. pah ... not even trying

I was.... something last night.... possibly even almost needed a late sht of hydrocortisone; though I kno if I'd have done that, it'd have ed me up so far I'd then have had to eat, and would have not slept at all

As it was... there were at least a few hours sleep

but. err.... not to put too finer a point on it.... feeling somewhat better this morning, after regulating out the hydrocortisone with a .... rediculus breakfast/brunch/lunch

Scrambled eggs (sadly I have to overcook them to make oncologist happy), on pain au levain, toasted, with butter, and two substantial slices of gorgeous roast beef.

Oh yes. I'm starting to think the Victorians, Edwardians were really on to something with the level of seriousness they took their breakfasts with

Coffee is starting to argue with me

I've drastically reduced my intake, but do like the two cups from the smal pot, I brew in the morning.

Only. now. the 'bitterness' of it, which is the bit I've always loved, is strarting to argue with my tummy, and make me nauseous.

There is only one response to this.

Well. I guess one could 'give in' and stop drinking it'. I've done the opposite. and just challange it seems its more settled going down if I manage to drink it all whilst its relatively hot mind

The first post; the rhubarb, and carpet, and a few otter bits; were slightly oblique references back to 'Night of teh hoover', the storey thing we ran years and years and years ago, in the post err... I think I mentioned the spandex clad guitarist anyhow.... still wanna re-visit some more chapters of that story some time. it had such great potential for surreal and. I'm starting to think I quite like surreal.

But. basically. thanks for putting up with me... yet again last night

I think I might try nap today... the weather outside is just so horrible, wet, windy... sounds just horrible! and crawling in to bed... and ing with bee and ladybird seems such a good idea to me

Must get some stuff done first though.... like tidying up in th ebedroom and maybe some sweeping If I can just muster up the energy

< A2965188 >Night of teh hoover Post archive
Cool old Guy trying to catch up with five year of backlog
"Glad we have < <./>ThePost</.> > archiving everything "