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

As in. didn't happen. hence, no more fractionations and no more grays of radiation.

Got a phonecall early this morning. saying it'd been canceled. yeh. OK.
they wanted to rearrange for Saturday. Didn't even realise they did radiation on Saturday.
When asked if it was possible to put it back to end of the other fractionations; was told its kinda important they like to get at least the first five back to back. err. so not getting htat of course, as missing today's, and then err. no. that makes no sense. illogical. I don't understand.

Went to hospital anyhow, as had endochrine appointment.

Appointment with nurse, not Dr.

Nurse somwhat supprised. as in, really shocked to find I'd been diagnosed so long ago, yet not given teh emergency hydrocortisone injection kit.

which of course I don't get anyhow. as I can't use it as I'm blind. She showed W how to use it. so, I just need to ensure I don't go into an Addisonian coma and die, unless W is near me. err. OK.

Asked nurse ton of questions about how I'm ment to know if I'm low on hydrocortisone or not, and hence when to increase dose, etc. She sort of answered without answering. I'm none the wiser; Just playing Rusian Roulette with the tablets really; there's a long winded test they can do to see how much your body needs; no plan to give me that test as far as I can see.

But, nurse did make noises as if she might try brin gfoward my next appointment with Dr, to some time in this centuary.

She also didn't answer questions aobut whether my hot flushes might be Addasonian/hydrocortisone related rather than chemo/oncology related.

Basically; endo says go see onco.

I see onco tomorrow.

who wanna guess what onco are gona say?

If they do answer, as I expect, I may have to kill the poor Dr in radiology, which is kinda a pity, he's OK really, a bit dry and ... lacking a sense of humour but... he's more or less OK from what I've seen.

Shoulder/arm aching. skin a bit sore. starting to feel sore in my thraot, low down, difficulty in swallowing expected next, then onto a liquid only nutrition shake diet. yum yum.

Well, I suppose that's one way to loose the weight you're wanting to lose

OK, so that's a pretty far stretch to find a bright spot...

that was my first reaction too! gotta lose this weight! - sod the cancer rubbish... I need to be back in my skinny fit jeans! seriously... when idd I get so self... conscious and vane... ? was a bit.... low earlier... less so now. I'm doing twenty fractionations. come what may. if they're ... less coorperatiove than what I want, that will be the end of treatment. if not.... and they ... start communicating, I'll do the thirty fractionations.

I've still got weird left to discover.... afteall err... afterall... I have ... damnit. I hate... having hands I can't feel. its so damn horrible. =- off to bed soon. I'll cry for a couple hours, then maybe sleep two. get to see radiotherapy Dr tomorrow for first time since starting radiotherapy. questions to sak ... ask...

My god it must be so frustrating! On the bright side once the radiotherapy is out of the way and you've recovered from that, no other department will be able to refer you to oncology! Perhaps then you might actually start getting some proper answers and results.

It seems to me the sensible course of action would be for all your consultants to sit down together and discuss all your symptoms as if you were one functioning whole rather than a selection of symptom boxes to be treated individually.

Do you spend much time banging your head on walls? I think I would!

Deb

Me? my head? brick walls? err. yeh. I need a plasterer to come in once treatment's finished and reapir the dammage.

one major advantage of all this nonsense. my pain tollerance... actually that isn't right... its less tollerance to pain, mor I can entirely just chose not to feel. so beating my head to a bluddy pulp on the wall is only painful to the wall thesedays - in all seriousness, I've really worked hard to not* do that; otherwise my default anger releae would have ment by now I'd have been in several dozen times with broken finger bones, wrists etc- punshing the wall full force was always a nice little realse.... but now, I honstly think I'd do it way too hard for both my own and the walls good ,laugh> so... Ive been and not done hat. - instead I mentally beat myself up; I'm rather good at that

Well. slept last night! just a bit annoying it seems to take the melatonin and three pints of decent strength beer, to enable me to sleep at all.... err. entirely forgot what I was saying now.

have a nice list of questions or/and points to raise with Radiotherapy/radiology Dr this afternoon.

radiotherapy releated; mention so It was mentioned the start of 'things' in my t throat.
mention the skin changes (skipping a day yesterday they've improved actually).
mention pain in shoulder/arm.... aching really.

what I assume is chemo lefover things to mention no one has addressed;
cognition. I can't tink half the time.
spatial awareness; never really seen much mention of this, in relation to my Chemotherapy, but have seen some second-0-hand information on net suggesting it; spatial awareness is... just knackered; keep walking into doorframes etc.... - probably expalains why non-radiated shoulder hurts too
sleep thing. - tempted to get a differnt sleeping tablet.... just to try and have....
err... sure there was some other stuff to mention too. I've forgotten already I hate not having a working brain

I made a strange man laugh in the toilets at the pub last night.

hmm. now; should I expand on that statement or not.... - I think its more powerful without an expliantion...... at the moment

W and I have some to a startling..... and rather hmm. nice revalation about my local pub.

all the bar staff....... appear to be.... in some kind of..... mututal...... err... there's a word there here I can't find/think of... err... well. they're all doing each other.

this pub also, was the one where one of the bar staff commented o the purple suade collar I wear - her comment displayed that she knew exactly what it represented... err... just saying... this pub near me.... looks like its frequented by an interesting bunch of people... and... those that actually work there, look rather interesting too...

Everyone needs a challange.

By Christmas. - yep. oh yes. I've found soem new weird to go discover... and.... get in on - not that... I've really got enough energy for such things right now... well... not all the time anyhow... hmm. mind, W and I ...

Right.

time for a cup of honey and ginger tea. morning coffee already drunk.

Then I can shower.
W said he'll hoover for me whilst I' shower (damnit, ment to be my job... I'm just too damn weak/tired to do everything so unfair) then W can shower and we'll be set for this afternoons fun and games in my home from home, my new real home... home sweat ... sweet home... oncology... haematology .... radiology....

hmm, its Thursday! spag bol night for our favorite pruple haired receptionsist. - I think we should take her the purple top hat we bought for her today.

to steal............. a vaguely recalled advertising phrase from the TV...

This isn't just cancer, this is 2legs cancer gotta keep the insanity flowing and going. so much weird yet left to uncover.

I'm getting me a top hat too soon. not sure what colour; but it has* to be leather. Its gona be... so me.

I wonder if I can sneakily just wear a dress today to my Dr appointment... hmm. actually, something I've found, one gets way better results and treatment from Dr if you dress and behave more like a 'nomral'. behaving and dressing and acting like a 'normal' doesn't come naturally to me best thinggy I guess... err... nope. entirely forgotten what I was going to say again right. tea is brewed apparently

I like Deb's idea of putting all your docs together and getting a rounded picture.

Perhaps you should just print out all your journals and distribute them to them?

I think that'd scare them off me for good! - pretty sure I terrify some of the nurses an Drs... <evilgrin. but... me? terrifying them? I'm so meek and mmild ohnestly I am I dunno.... just because they've never had a non-hetronormative submissive blind slave before, in oncology/haematology.... - no ribbons for my hair today. no shorts. no chainmail. - gona try behave like a normal in front of the Dr - unless you sit there, and look and sound like your a Guardian reader, you just get short shrift, IMO

anyhow.... TBH, my hair isn't up to full ability for supporting the ribbons anymore - let alone the 13 more ribbons left to attach for the remaining 13 fractionations of radiation - and, I think the radiotherapy staff, might be a bit perturbed me goign into their CT scanner, with the chainmail bracelets on; even though they don't pop me in further than my chest/abdomin; they let me wear my watch, wrist bands etc...

luckily.... even though I can't wear the collar, of course, during treatment, it does mean I can wear my engagement ring, and the leather bracelt/band, bought for me jointly by W and DQ ... yeh... I am that sappy feels so weird not wearing teh collar though... - and, actually not been able to wear it often, lately, as thiese hot flusehs flushes are getting so damn frequent must go find food and some drugs to take

With the multitude of sleeping medications on the market, surely there is one that will work and won't make you feel horrible. You really need sleep.

As for top hats, I have a really nice leather one that I steam-punked out with brass welding goggles, a quill pen and two playing cards. The cards are the 4 and 2 of spades, naturally.

OO! so leather top hats do exist! shall have to look for one at some point I may equally have to steam punk it out... I'm thinking chainmail... natch...

- Dr gave me new magic tablets to try... not a sleeping table per sai... but oughta kinda work the same, hopefully without same side affects; hopfully with better sleep than sleeping tablets give; when the Zopi did work for me, the sleep I got was really horrible sleep anyhow! which... TBH, wasn't much of an improvement from not sleeping

Dr... also said a few other things today. but... these so* have to go into the next journal. which I'll do later; its .... gona be epic man
for now... i think W and I must find soemthign to eat... - another long day, even through the treatment is short, not really been back long; walked about half the way to hospital, was too tired tough, had to get bus rest of way; but I walked with W all the way home (oh yeh, I was absoulutley knackered by the time I got back!; ran straight to the sink filled my glass and popped some hydrocortisone, and then to the fridge, and ate three choc bars, to restore my unatural balance - then a cup of ginger and honey tea, natch )