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

evades me, once more

got into bed at about 12.30.


got up, having not slept, at 4 AM.

spent a long while listening to albums, on the IPod, then meditating.

popped a 20 MG hydrocortisone, on waking.... yet again messing up my drugs for the day

normally I'm on 20 MG a day, but felt so ... weird and low I thought a big morning ... well middle of the night dose, was in order... might help me stay awake if tnohign else

I'll probably aim for a more normal 10 MG dose at about 9 AM, but as I've not slept, it kinda messes up the dosage times, so then probably a 5 MG also at about 1.30, and nother 5 MG about 5 PM... at least clearing the final dose early in the day every day means it not oughta be adding to my insomnia.


odd hot flushes... testosterone related I think... and cold shivers... ; the latter probably just from tiredness. so. so. tired. so wish I could sleep.

shall make a cooked breakfast soon. but not yet... as I'll probalby end up waking everyone, with a combination of the smell of it cooking, and my cac-anded neuropathic efforts with the cooking plus my swearing which is inevitable as I can't cook without burning myself anymore but... I gota eat right...

off to hospital early afternoon... gotta go try find someone in vascular inserts, to access my port, so teh MRI scan people can use it, later on, to add some contrast agent to my head/pituitary... I wonder what contrast agent they'll use this time... Radioactive fructose is quite nice... but the weird one they sttick in, for the CT scanners, which makes it feel like you've we t yourself, is kinda horrible - i'll ask them again if they've got a gin flavoured contrast agent... only with less tonic than they useually insist on

I might sneakily try wear my feather boa to the MRI scan; which, is, of course, taking place in the maternity department of the hospital. seriously.

shall hopefully walk back from hospital, as it'll be rush hours and the buses wil be knackered - advantage being we can visit the pub on the way home... the one we'd stop off at on the way back from radiotherapy and chemotherapy... yeh. yeh. the chemos ment to make ya sick n stuff, and I'd useually stop off for a pint afterwards

I'm not like normal people.

Rice N peas Thursday today! my national dish of my childhood. =- I've decided that unknwon to everyone, including my parents, I am, actually of Jamican descent. and so Thursday, back when I was a kid in Kingston, Jamica, was always rice N pease night hopefully with goat curry, or jerk chicken I think, if they've only got mutton curry Mmm... damn I'm hungry now so tired...

so sleepies. managed to cook susages, eggs, bacon and toast, for breakfast... without too many bad burns on my hands
must shower, soon, try to wake up

coped during the day. on no sleep. including going to the hospital on the bus, being mistaken for a female by a bus nutter. quoting blackadder at a lunatic in front of us; would have been the bus-nutter herself, but I and the person who mistook me for a woman, probably out-trankerd her, TBH.

got to hospital.

found the matternity department.
err, no, got to hosptial, found medical engineering, and thence vascular inserts

located Hildaguard, who stuck a dagger into my chest once more

and, then.
realised.
for eight months of chemo, or whatever it ended up being sort of, I should have been along to see hildaguard each time, to have the port accessed, rather than leaving it up to the unsubstantive and insecure, and tremulus hands of those nurses in the day unit.
nice that no one told me/us this was the correct portocol. seriously peed off actually. eight months of pain in my chest from inadaquate port accessing because... no one bothered totell us the protocol.
then went to matternity.
eventually located an MRI scanner in the basement.

de-metaled myself, which took some time

got scanned, fell asleep got woke up to be injected with pernod and black, or whatever the contrast agent was
then fell asleep again whilst on the second batch of scans

got home, via the pub

collapsed about 8 somethin in the evening, after a massive plate of peas n rice, and chicken curry

woke around midnight.

and of course coudln't sleep.

variously hurt myself in anger and listened to music. Accidentially broke my new steel locking collar with my bare hands, when I got grotty and angry and stuff, after walking into the wardrobe, cutting my leg on the bed, and stuff. ,blush>

tried again to sleep at about 5 AM, having had a hydrocortisone about middnight on waking I think

fell asleep at some point, woke 9 AM, or a bit before, crying, no tears of course I can't make tears anymore.
cuddld bee and sang to her fell asleep again, William left me to slepe, and I woke about midday.

felt kinda OK... for once...

took 10 MG hydrocortisone.... which somehow just aoaked up straight away, so took 5 MG at 1 PM.

went to do a bit of shopping, grocerys and things.

William now gone home for the weekend.

left arm, shoulder, back so painful. still not taking any painkillers, I can't see they'd help much really

very itch durng night too, no idea what thats agaabin about.

heqd so not working. but better on my own as I can't take in too many stimuli soemtimes as its too much. just wish I could filter out the noises from outside, they distract me and ruin concentration for anything else I think.

hopefully can settle down the hydrocortisone dosing, and timings, today, so might end up back towards a vagueness of normality visa sleep times, and subsequent dosing times
wish I could get my head working.

OK. lettuce try this sleeping thing... once more bath earlier, meditating quite a bit too, so ... hopeful that tonight might work
Even took melatonin earlier so that oughta help final cuppa camomile tea, then off to hopefully have something resembling a normal nights sleep

Cool old Guy watching s
"Good night

Itching from newgrown hairs, was then not the solution to keep the area cold? "

I hate to say it, but your experiences are sounding a lot like the complaints against socialized medicine we in the States hear from conservative politicians.

Their main problem is lack of coordination, and management. and inability to communicate, most especially by papper/electronically.

I'd be living destitute on the streets, the last twenty years, from my 'first' big hospital stuff, were we not having the NHS here. and I'd not have had any money left for any cancer drugs this time round (circa £30K just for the drugs themselves for the chemo, this time, plus whatever all the scans, subsidary drugs, nursing stuff, opperations, and Radiotherapy costs, plus whatever the hormonal stuff would have cost)

Actually. the main problem is that I've been ill; I've not been thinking properly enough to organise whats been happening myself, and keep an eye on it all, as it were - I can't recall being diagnoised, I can't recall having the port inserted (and consequently can't recall anything I'd have been told about it, at the time)

Also, in the dayunit/outpatients where I'm being treated for the chemo RT etc., they're wildly under-staffed ATM, and my central point of contact is off long term sick (yeh, maybe they could have told me that, six monhts ago; no communication).

Structurally it requires more funding, the actual physical space is way too small for the hundreds of patients they see a day, which is straining on the staff, and patients, and putting in place an accident waiting to happen (just a lack of physical space, the drugs, lines, patients, in the actual infusion room, are almost on top of each other!; how they get th edrugs into the right patient...... in such a confined space)
Successive decades of underfunding into the NhS means the infastructure is just collapsing, and add into that a lack of forethought and planning, and they get the staffing shortages, which of course go way way back to a lack of training up nurses, specialist nurses etc., in decades past, IMO

oo!; slept last night maybe five or six hours until Tarquin woke me up, and phoned me, to ask me about somthing ... I think I may have sworn at him again

Back during our big healthcare debate about 4-5 years ago, consrevatives kept trying to tell us that Canadians hated their socialized medicine. It was rather inconvenient for them when it was pointed out that they put the face of the architect of their healhcare system on their money. He's a beloved national hero.

healthcare free at the point of delivery is to me, the only sensible way for it to opperate... It just seems so logical as it benifits everyone, especially the economy to not have workers and tax-payers dropping dead, and ending up long-term sick and unable to work asides any benifits for the individual themsevels, and more widely in society for cohesion and stability Individual niggles, and problems cannot ever be symptomatic of any overall problem, its population statistics that matter afterall; E.G., as an indivudla patient, my individual risk of getting cancer from PET scans is so so low, yet I know, logically it makes sense to not have regular PET scans, for overall population stats, on risk of cancers developing, VS the remote possiblity of picking up anything in regular observational scans for part of monitoring...


i slep t last night... ventually.... woke... and just for once... said sod it... rolled over, and slept another two hours! mixture of meditating, cooking a gorgeous breakfast, cleaning kitchen, washing up, and putting laundry on, since waking

Must ake more medication soon err, medication I think... or meditation... err, maybe both