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

Is, apparently, not my loverly matress, the duck-down duvet, and the 90 quid worth of down pillows, plus pillow-pet teddys/cusions, but, instead, is a freezing cold room, with a narrow, hard, 'bench', and a loud CT scanner wizzing about my body!



OK. I tried go to bed early, due to th early start... so was in bed, not long after midnight.....

and, managed maybe two hours sleep, before I got up at 6 and manovered my stiff, aching body into the shower.... - didn't wanna be dirty, especially as I was expecting a potential 'physical' from my consultant, due to a couple of the side-affects, seemingly I'm getting which are... from what I gather... some very peculiar to me thing, or an odd combination of the chemo drugs plus the hydrocortisone for Addison's.

- as it happened, didn't get to see oncologist today, as she didn't want to see or be near a radioactive me

got to the hospital, before half the staff but found a door in...... and got ourselves to the PET scan bit, next to oncology. - so... tired... no caffine and no food, and I hadn't taken my hydrocortisone, as your not allowed to eat etc., before the PET..

PET was closed

so we wondered down, as the sign directed, to the CT scan bit, closer still to oncology

otter confusion ensued. no record of my scan. and they coudln't find anyone to contact......

so we told them not to worry... and went into oncology...

home from home. I was soon set apon by several nurses

they got on the phone.....

and, found I was booked into the mobile PET scan unit

just started mincing our way in that direction, when I was hailed by a very familiar voice

"bloods!"



they thought as I was there, made sense to do my bloods before I got injected with the radioactive sugar (F18).

<laugh< only a few peopel waiting for bloods.... so the hurranged them, and I jumped the queue

I told the bloods nurse, soon as I entered, that he'd never find a blood vessel today, as I'd not had my morning coffee, or barely any liquids, due to fasting for the PET...

once in the chair... he looked at my arm.... agreed..... then found a vessel first time

Didn't feel the needle go in. Just 'felt' a purple-sort-of light colour, spread out over my left forearm...

then off to the mobile PET unit, outside, over the grounds and up the seriously dangerous metal steps


then the 'fun' began

radiologist goes through their speal... confirm my DOB, address, yabba yabba, then, all the stuff about I can't have metal on me, for the scanner.

Oh.

I'd forgotten! seriously I had... - I'd just got dressed 'as normal' after showering in the mornig....

I took off my watch.... and then she said "and the chainmail too"....

so I got the key, and unlocked the cuffs/bracelets....

took off the leather wrist band/bracelet (joint bought for me by Sir and Ma'am).

then, she said "you'll have to unlock the collar too"

actually... its not a locking one

so I tookthe collar off...

Oh... gosh... I've kinda really gotten used to wearing that, almost constantly, since the end of Jan, when I got diagnosed..... not wearing it, and not wearing the leather bracelet at the same time... oh.... had to really work hard, for a while to stem the feeling of panic guess... they've developed quite a 'comforting' sort of thing, in me, of late

and... then I removed some more 'regular' stuff... phone... keys.. snus... some other bits of junk... etc

and.

then... the radiologist asked;

"anymore metalwork?"....... "no nipple rings to remove?" actually.... no ... oddly enough I think... she had me sussed

"not today... " I said.... "and I'm not wearing the chainmail knickers today either....." I ... couldn't resist

then the painful, having to sit an hour whilst the radiation was uptaken in my body; err, first they injected it, natch... again, the nurse who put the line in, said I had 'no blood vessels', but still found one, first time

it was yellow colours this time... sort of orangy on my arm

then the sitting not moving, talking, or fidgiting for an hour, to allow the takeup of the radioactive glucos (or whatever sugar it is)

felt... so... odd... that'd be exactly the sort of time, I'd always find myself just 'toying' or 'touching' the O-ring on the collar.. or holding the leather, or the leather on the wristband... etc... so glad I managed to remain calm... kinda just zoned out for the hour, and it passed quickly.

then the scan itself.... arms above head, as I laid down... and trousers lowered beyond my knees, to avoid the metal in the zip etc, being in the way of where the scan was focused on, I guess...

and.

I fell asleep! must have slept for a good fifteen minutes or so, of the twenty or thirty minute scan... quite a short scan really

so.... stiff and cramped up wen I got off the scanner - and damn thirsty, and dieing for a coffee, and something to eat; and wildly low on cortisol/hydrocortisone....

headed back to oncology; expecting to see consultant...

was told we'd done it wrong ; was ment to ahve had the scan, after seeing oncologist.... so we'd somehow ended up getting scanned early... no idea how that had happened

then, spoke to the CNS (main specialist nurse in charge), and she... said... a few odd things....

she was obviously trying not* to say.... what she was saying... so ... sort of didn't say it... but.... both Sir and I got the same impression.... that .. of, rahter, what she was 'not' saying....

Hmm. told you I was invincible. indestructible. - I ... and William... got the impression, I might not have much chemo to go.

Even, one of the things she said... kinda suggested, I might get a call today, suggesting tomorrow doesn't need to occur... - though I'll still go along, whatever, I'm guessing I'll need/want to speak to my oncologist, I'd not be happy with it curtailing so abruptly.... as 'loverly' as it isn't... a certain degree of overkill is called for, esp as I'm not really getting any wildly aweful sideaffects and am handling the drugs, basically fine....

we'll see.... - could have entirely got the wrong end of the stick, of course; and, the scan results won't be through, for quite some time yet, as they'll need to be analysed etc to work out the metabolic activity, or otherwise of the areas of interest and 'score' me - I'm hoping for a 1, natch... though 2 or 3 would be OK... I guess...

wondering what the nurses know I don't... something fro my bloods perhaps....

bloods sounded fine. still got my neuts at about 1.6, which is really good, I think... better, I might add, than a 20-year old I know, who's at exactly the same stage as me, in ABVD chemo for hodgkins, and who keep regularly dropping below 1 see... told ya I'm indistructible...

higher energy yesterday and today, despite early start today...

took teh libertity of buying ginger, chillies, garlic, onions, on way home.... I've a plan... for dinner... cooking something again... - boared of the not cooking real stuff thing...

gona make bread next week. and go out to the pub again, one evening but... for now... I think a 6 AM start, after 2 hours or less sleep... is justification enough for a nap? - I've cleaned the kitchen, and eaten; chicken, cucumber, lettuce, and mayo sandwich, plus some cups of tea, so... i'm not entirely slacked

then... must get on with stuff...

another Lush bath bomb, bath melt, bath for tonight, on the agenda; and then the chemo tomorrow... unless we hear otterwise

wonder if I'm still radioactive

Oh, my!

It's a good thing you weren't scheduled for an MRI or those magnets would have turned you into various selections of steak and ground meat with all that chain mail.


Speaking of which, I've got an MRI scheduled for Monday. It probably would have been a lot more useful if I'd gotten in three months ago.

Oh, well.

Not sure I'll get any MRI scans, this time round 'being ill'... had plenty of MRI and tons and tons of CT back wehn I had my initial aquaintence with being ill for a few months, back in 93 and 94 - all my head trauma tubbish, and the first hemorridge and that nonsense and fun

well, a PET scan is a CT scan really, just with the injection of the radioactivity, I think... ; they do two complete body scans, whils your on the 'bed', one is a regular CT ; soft tissue, bones, etc; then they do teh one that picks up teh radioactive sugar; and they compare the two; to see which tissues, are metabolically activity; ones with lots of cell activity, like divididing pick up a lot more of the radioactive sugar, so show up more, and they're likely to be the cancerous spots; they do a neat bit of m maths; basicallyl they work out your 'background' activity; by looking at, I think it is the lier and the medistenial blood pool, then do the neat m maths, compairing any other 'hot' spots of activity to this, and then work out ya number; hence why I want a 1!- that's teh bees inees.... knees.... 2 and 3, plus 1 all mean the same thing though... which is happy 2legs and Mr Hodgkins being outside the building - I'm sure I heard the door slam when he left, after the first time I threatened him with reading the entire col collective works of nighthooverism to him... back at the beginning of Febuary... but... - its go good to let teh nurses and doctors have their fun... and afterall, its good they learn how to deal with tricky, obstinant, and downright surreal and weird pateitns,as well as teh 'normal' ones - we'll see... I'm still expecting at least another two cycles of chemo (two months, and chemo infusions every two weeks), and, haven't entirely forgotten that the origional plan, sits at four more cycles/four more months, 8 infusions , starting with the one tomorrow so gonna stop off at teh pub on the way home from chemo tomorrow just... because

got a feeling the cancer is the easy bit... the oddness with my adrenals, etc., could be.... the complicated thing ; still not heard any more back about penitious anemia, and hypothyroidism, both of which I have... apparently... and neither of which they seem to wanna pay much attnetion too... and I'd still like to find out what happened in me head, this time; the second hemorridge/stroke/whateveritwas they mnight wanna do a sacn on taht, follow it up... - I'd rahter not have to admit myself as an emergency when a haemotoma decides to explode at an inoppertune moment like
was playing guitar again yetsterday.... think the neuropathy in my fingers is easing a bit, even if I've still got constant pins and needles in the very tips... hoping so much they return to normal, at some point my sense of touch is... kinda important really

Mind, according to William the guitar playing sounded OK, and, he also seemed to make noises suggesting I still have good control over my hands, and the finger tips know how to do gentle and ... firmer ... actions

still can't decide if I oughta nap or not... I kinda don't feel tired now... which in itself is a raring,; the tired I had earlier was kinda good; like 'normal' tired, not 'fatigue' which is just... orrible....
think I'll have more jasmine tea, and maybe play the guitar a while, instead... - I've decided not to buly some of the ... silly gifts for myself I was thinking off, liek more teddy's.... - may save up a bit, for a decent acoustic guitar, sort of been thinking about getting one for eyars, as I'm sorted entirely now, fon the electric front, and I've not had a half decent acoustic for so* long - I'll wait until fingers are somewhat better practised mind, before considering such a purchase... I've still gotta set asides some of that money to ... treat a couple of people to things, once this.... little interlude in procedings is finally done and dusted