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

Oh.
Oh. deary deary deary me.

I think they've done it this time. I really. really. think they have.

Oh dear.

Someone...... really isn't going to be ready forf the consequences of having dehumanised me, and in the process upset William.

If someone upsets William. they've got me to answer too.



Went up to bed, a couple nights ago. - I have absolutely no idea anymore of time. days. its all. kind of. random giving my not sleeping more than about one day a week.

err, hang on.
Today's Thursday?: right, I know that; one week to final chemo! I can't forget that.

OK.
so yesterday was Wednesday.

most of this occurs, I think Wednesday, yesterday.

but, some starts teh day before, which must be Tuesday.
So.

I guess.

I went up to bed, Tuesday night, about 2 AM I guess.

eye a littel itchy. my right eye.

OK. I've this thing with pain. I don't get it. but, eye got hurty. more hurty and hurty than any hurty I've had hurty since.... well, for a long long long while (probably twenty years).

OK. that... was feeling a bit.... rubbish and stopping me sleeping.

Got up out of bed, about 4 or 5, made tea. drank tea.

Eventually the night went into the next day I guess. eye still hurty.

err. not sure what I did... which order... I think I contacted William first, about 7 (knew he was up fairly early anyhow).

William made me phone 24 hour haematology/oncology number.
Which. turns out. isn't 24 hours. seriously. - if I had the strength I'd have headbutted the wall then, for affect. effect. but. I really just don't have the strength.

Got some overnight treeag person, said they'd pass my stuff on over to the 24 hour haematology/oncology people. when they came in.

They didn't. of course.
I phoned back, 8.50. finally got to speak to someone.


they wanted me to take my temperature, make sure I'm not running an infection.

So. I. Explain. Again. and. Again. And. Again. and. again. and again. and again. and then I explain again, and then I explain again.

Then I do all the explinations again. but slightly differntly.
I'm not sure they understand what the word 'blind' means.

seriously.

Eventually got some sembalance of sense.

Wait for William to arrive to take my temperature.

William arrives. and, supprisingly I've not got a temp at all (36.7 left and 36.9 right ear).

eye still hurtier than winner of last years Mr Hurty competition.

William insists I strip my shirt off.

Then, sadly, only proceeds to check my port, for signs of infection. - something the oncology treeage had entirely forgoten, BTW.

Eventually speak to haematology/oncology again. Told to phone my GP.

phone GP.

Book appointment for 5.30 PM.

Get phonecall, earlier in day, from GP, saying oi, come in now..... so we do.
See GP, who's good. thinks maybe something up with cornea - possibly dammage that just been there for years, agitated by dryness now, etc. Doesn't look infected.

Get appointment for eye clinic, for 6.30 PM.

Come home.

Go nap.
I'm so. tired.

William, notices two things after we nap.
1. he saw me asleep, and possibly snoring slightly. he doesn't think he's ever seen me sleep/snore before.
2. and slightly more worrying.
on waking I have no recolection of where I am, or who I am.
I do, oddly, apparently know who William is.
I can't find the bathroom, so William has to take me, and, apprently (I can't recall this), show me how to... well... urinate.
I come back into bedroom, and get into bed the wrong way round.
Most. odd.
(I can't recall most of it).
eventually. I sort of... 'come too'.
Guessing that was a petit mal seizure. no idea why I had one.

Told oncology about possible fit. they'll ignore this though. I know.

went off on bus, to hospital.

got to eye clinic early.

eventually got into clinic at about 7 PM.

First nurse, sees, comments on my white cane, - so, one assumes, she's clocked that I'm blind.

She then sits me down and asks me to do an eye test.

err. OK.

Doctor we then evetntually get too.

She addresses me (to William) as 'him'.
At this point.

Were I not so weak and ill from the chemo. I would have murdered the doctor.

As it is, she eventually decides to look at my eye.

she puts somethign in front of me, which I am entirely unaware of.

She then points at it.

She then gets angry with me, when I don't do what she says, as I can't see what she is pointing at, I don't know she is pointing, and I have no idea there is anything to point at;

Basically she says really strange, utterly insane things to me, and gets more annoyed with me, for absolutely no reason.

At this point I nearly just went insane. I may have. I really don't know anymore.

I can't handle, people, opperating, behaving, thinking, (or not), performing 'logic' and such like, in such insane, utterly illogical, nonsensicle ways.

either I have gone mad, or everyone else has. I'm really not sure.

Eventually got cream and drops and stuff, and my eye stops hurting about 9 PM.

Told to go book appointmnet for within the next few weeks.

Find there is no where to book an appointment as it is closed.

Illogic. doesn't make sense. I can't understand.... people... can't... be... that stupid.... its...


This is still the coma from 1993 I'm in isn't it. I really can't see any other explination fits anymore.

Oh my BoB, the absolute IDIOT! I am so sorry you had to go through that all.

You deserve to get WELL now!

I think I know a doctor and probably a nurse who need to go straight back to school and pay more attention this time

I hope you will think about putting in a complaint if you havent already, honestly if my practice is ever that bad I hope someone takes me aside and gives me a good talking to...

Double

No wait, make that a triple - and hold the ice

Some people, eh?

Oh... very much so... W and I are pennning an official and an hospital complaint but... really...

Its not about profesional training... or ... 'awareness training' or any of that nonsese.... and heaven knows such places like corperate things, and hospitals and government agencys etc., pay enough for all that twoddle... but... err... nah. I just can't get it.

If I walked into my local supermarekt, and went up to one of the staff we know really well, who was, say, putting tins on a shelf, and then I removed her top and book her breasts out onto public display and yelled 'ripe mellons'. that would not be acceptible. err. figure? nah. I can't even explain the level of that nurses and doctors inability to function as humans in society, its nothing to do with being aware of 'people who are blind' or any of that rubbish.. its.. just... I have to stop thinking about it, its too illogical for my brain to cope with it.

Hope I can get my head together soon, next week or two, before I'm entirely out of the grasps of the oncology department, so I can get myself a proper appointment with my GP doctor, to try get some knitting done.

I can't myself, as I don't have access to the health services in the same way as a profesional, get myself 'in' to the bits I need to be 'in'. so I need a GP, or soemone simular, to knit stuff together; I've not got any connection wtih neurology they just threw me out after they did the spinal tap on me, and so I've gone as far as their concerned, but, I need a lot more stuff from them, I'm increasingly convinced, what with at least one grand mal fit, and the peiti mal err yesterday, and I may ahve had a couple other petit mal fits; they're just so weird, as you... 'bounce' back to 'normal' so kinda instantly quite soon after, your left wondering what the eck just happened.
Possibly the petit mal just related to teh grand mal, which was a new injury as of the period I had teh grand mal seizture, but I'm wondering if there's soemthing tr trailing back, untreated to circa 93 94, and all that jazz...
of course, need to then tie/knit in the addison's, penitious anemia, and possible* (they may actually tell me one day) hypothyroidism and .... whatever else - still a possibility the addison's is secondary and lined back to 93/94 via the ACTH axis.... stuff, and pituitary gland or supraoptic nucleai.... err, from memory so ... maybe that does all knit together.... we'll see... if I can ever find a doc who understands anything other than little boxes.
Of course, that still eaves some tieing up in oncology, which hopefully may be easier to sort, whilst I'm still 'their's' as it were... like teh secondary lymphocytic infiltration question and some other stuff...
and hopefully non of the knitting reveals any too nasty stuff, like l leukemia or the secondary infiltration of teh adrenals etc... gets a bit more personal when their ability to think proper affects one's own health, potentially. I just wish I was a bit stronger right now.... my thinking is so nearly back to normal in some respects, I could teach them how to do it. properly.

Must have had a reasonable sleep today; was sure it'd take days or more to realign my medications and food intake correctly, after yet mnore total non sleeping, but sleems I got the hydrocortisone lined up about right already, by midafternoon today, and had food figured out round it, and whatever ever other endochrine abnormalities I'm kinda treating with nutrtient intake right now its a fine balance... though... given teh unknowns

Had pizza for dinner... and c cammamile tea which was nice tea... always used to find it way too weak... insterestingly it is peach taste. by which I mean colour. its cammemile taste, I guess, but the taste is all the colours of ripe, blushing peechs.... err, if that makes sense.... maybe also slightly the colours of.... err.... those ... ohter fruits... necterines? maybe... very pretty colours anyhow

just washed up and cleaned kitchen.

going to clean bath next, then have more then consider a bath.

it has a epic bath be, I believe........ = one Dragon's egg, and a couldren bath melt I think.... and coconut shampoo.... and coconut conditioner.... and the gorgeous moisturiser after, of course
then I can relax, moisturising myself, drying my hair, afterwards, listening to Sabbath.... don't know why it took me so long, but only finally got round to buy that album they did, just after I saw them live.... err, 13... (I saw them 2012, they said the next year was a clue to the album title, hence its called 13). very... throw back to their earlier style.... very.... dark.... hmmm... all about dieing of course, but... dunno... not morbid really... just... dunno... guess I'm just the kinda person who sists about drinking cammemile tea, listening to sabbath hmmm.... or... if I've the nergy.... I could always dig out something abit.... more... olively.... lively... and have a dance... that's a..... always rather amusing yeh... me... dancing... not...... a pretty sight at teh best of times

one week today. I'll have had, my final chemotherapy infusion.... assuming, all goes to plan, of course gosh. - still need to get the final ribbon for my hair! must get a pic up somwhere of my ribbons.... assuming I've still got enough hair a week today, for attaching them too

I've got strawberries to eat later. they're all mine. I could make myself feel really quite nauseaous if I eat teh lot... with icecream..... ... but... it... might just be worth doing to be honest

During my last visit to the hospital I shared a double room with an elderly diabetic whose blood sugar suddenly went through the roof. Only possible explanation: The had brought him some normal juice in spite of him reminding her to bring him sugar free

It's difficult to wrap ones mind around something like that - even if one knows that accidents will happen and more so when these are so very busy with a lot on their plates

But your eye and certainly take the

2legs, I investigate complaints for a living, including (sometimes) ones against the NHS. Let me know if I can help putting a complaint together or if you want me to puruse the complaint on your behalf. That shouldn't have happened.

Mol

Ooo.... that might be really useful; William's written a draft, which we talked about and are to put together a bit better;

I then plan on writing a letter myself; as of course, my experience is entirely neurological/in my head; I didn't see, or know what was happening, whilst this doctor behaved in such an odd way; I was, honestly convinced, a couple times, last night, that I was either dieing from another hemorridge or going totally barmy/bonkers/insane; the actions of the doctor were so nonsensicle, to me, without my being able to see. - It was... I dunno... just such a total non empathy, on her behalf, but, so much more;
observational skills are, I would have thought, fairly important for most people, so we don't walk into holes in the road, or cut our own heads off by accident, whilst making cucumber sandwichs.
but. err. I'm sure my notes must say I'm blind. they've certainly got my medical history, like about my losing my sight, etc, I've walked in, being guided, with a white, cane in my hands. also, due to the pain in my eyes, my eyes were, unuseually for me, pretty much scrunched solidly shut to block the pain, almost constantly by this point, as they had been for err, about 12 hours or so.
William had guided me to the chair, which I'd have thought another indication my eye sight ain't that good... and.. yet...

Then, even when William sort of 'told her', 'but he can't see what your doing or where your pointing', etc, she ignored that, and jus continued, as if, I don't know... it still doesn't make sense in my head... Perhaps I have just lost it.

Happy to help if needed. Email address is dmlofas at yahoo dot com.

Mol

I...

Just... can't...

Gah!

I told Tom a very quick version of the story, and he was sure I must've gotten it wrong somehow. Then he said to tell you he said, "You can't fix stupid, I guess..." (Obviously referring to nurses and eye doctor...)

Me, too. Sick with rage here.


It was also very interesting to see inside the head of someone who is having a petit mal fit (is that a tautology?). Thanks for describing that to us.

It's a good job you're 2legs. A lesser mortal would be hiding in a cupboard whimpering and going wibble by now.

I'm in awe of the way you cope with life at the moment. But that eye hospital visit must have been a complete hammer blow. It's often tempting once the initial adrenaline rush of pee'd-off-ishness has passed to think you can't be bothered to pursue the complaint but you really should. They need to be made to stand in a room in front of people and told how bloody stupid and inhuman they were.

Deb

TC: its so hard to discribe!; I want to describe it, as me; as I am me; but, whilst it happened, what occured; that wasn't me, so!: yeh, its just so weird!; I really had no idea where I was, who I was, and the bedroom; the bed; teh door, the bedframe/headboard; things I've known for like twenty years; I didn't recgonise!; even wehn William had guided me into my own bathroom; yes, I had no idea where the bathroom was; I have a recolection of feeling the floor, the matt, that has been there forever, and .... nope, just didn't click in my head that I recognized it, or knew where I was; then, a few minutes (I ugess), later, back in the bedroom, I still didn't know... then... suddenly...... - of all things; I slid open the wardrobe, side near the bed; put my hand on to the shelf inside; and felt something I'd just suddenly remembered I owned, and I knew suddenly was there; it was there; I felt it.... 'pop' I was back in my own head (your not gona belive this... I'm just so '2legs', of all the damn things in teh word... it happened to be a pair ... of ... nipple clamps that for some reason just happen to be in that cupbaord on that shelf, at teh front edge.... I know... I'm so hopeless....))



Deb; thankyou! - To be honest, I'm .... kinda baffled how I'm doing it; physically I always just assumed I was indestructible, err, though a bit shocked to more or less discover that seems to be the case. emotionally.... etc... - I'm a bloke basically, emotionally, I'd never considered myself 'emotionally', of course!; but, I dunno. somewhat more... boyant underneath than perhaps I figured I was (were I to have ever bothered considering such a thing, of course), and, dunno. - as William said, yesterday I believe; my ability to do 'silly', in any given cirucmstance; whilst I'm in the back of an ambulence being taken in to hospital a few hours from dieing from septacemia; I'm jokign with the paramedics, seriously!; I have no idea how/why I do that!; William says its my 'coping mechanism' - I have no idea what a 'coping mechanism' is, I'm a bloke! such things dont' exist! (gimme a beer).


Oh.
Don't worry; there is no initial adrenalin rush to pass off, as goes the eye hospital visit; I have never, in my memory felt as bad as I did, in that eye clinic; I can't quite explain it, but, the sensation, feeling, sudden certain knowedge that I had just died; my mind had ceased to exist, that was the most terrifying thing I have ever experienced in my life.
-
I do believe the previledge of giving her a talking too, in that room, befalls me. - and I don't come in a hands-off/restricted version anyhmore.



Good day today so far.

I slept! again!

My sense of taste has just popped back, on full power (I'd not noticed it'd gone really, but, obviously had drifted away somewhat).
coffee so good this morning - ittasted nice and didn't make me feel sick! (yes, I'm that stuborn that I continue drinking coffee, even if it makes me feel sick. if I didn't.... I'd be giving into the chemo drugs, sod that. )
Scrambled eggs, lots of butter, pain au levain, toasted. MMMMMMM!

cleaned kitchen, steralised. three times. got food tied up correctly with hydrocortisone taking, eye drops in, eye cream in, folic acid taken. bedroom tidied. myself beautified.

Oh.

the pendant I was given as a gift by a certain person err, a couple months back which she'd bought whilst on holiday for me, - my fingers/coordination must be better... I can do that clasp now so much easier aww... its so pretty too; as its warm out, I figure the jade pendant is a bit more sensible wear than teh purple quite substantial leather collar today
err, pottered about other stuff done...

a good morning.

looks like being nice weather, and William should be here, about 13.30. - must think about some more food soon, - balancing biochemistry is hard work!

What joy to read about returning sense of taste, and better fine motor skills! And even sleep!

*adds one more vote to the report the doctor pile*

I think the sense of taste, it just kinda comes and goes a bit; I've never had teh really bad no taste, or horrible tast stuff, that a lot of people on my chemo get; in the same way I've escaped any actual nausea... ; but, each chemo session is diffiernt; I'm guessing just today; taht is just bang, its 8 days since the last infusion, and wahteer it was this time, doing whatever it was doing this time, to my taste, had, just stopped! for now! - bit like this time I got the smell of the dacarbazine on my skin; not had taht before, for any other infusion! (at least taht has stopped now too).
the touch thing; partially its teh neuropathy still getting better I think, partially its being more awake alert, and coordinated etc... - as ever its all kinds of everything bundled up together......

All this sterilising and cleaning you're doing - could something from that have got into your eye to cause the pain there in the first place? And don't forget it's late spring and with your immunity down, you might be a candidate for hay fever (on top of everything else). Just wondered.

And on a completely different topic. William is a hero. Let's hear it for William.

WILLIAM
WILLIAM
WHOOOOOO! WILLIAM!

Deb

Yeah, well done that William

"Dehumaniser" is a good word - your experience reminded me of one time when I went to a tourist attraction, but there was a step to get in to one part, so my dad gave me a hand to get my wheelchair up the step, and I was quite happily looking round when someone came up to us, looked at my dad, and said, "You can't bring that in here".

The word "that" just cut through me - the person was probably referring just to my wheelchair, but given that it is essentially my legs, it is a part of me, so I was "that" We complained and got our money back (as a different member of staff had gladly taken our money at the main entrance) but it wasn't very satisfying as they ultimately didn't really "get" our complaint... We haven't been back since, though, so they lost out.

to you and William