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

gosh, yesterday, Wednesday, was a busy day at hospital... a long day more than busy, but, with it being a warm/hot day too... bleh.

Only went in for the ct scan, that couldn't be done properly last time I was in;
last time they made my death-mask, and needed to then do the CT scan, from which they can take the 3D model of me bits, they wanna zap with the rads. well, this time, we already had the death-mask, so they only needed to do the scan.


Was into the hospital, before time, up through oncology/haemotology, my home-from-home, and into the new exciting.... terrifying world of radiotherapy, and along past the MRI/CT, to the desk near the CT itself, and announced my presence;
sadly, the receptionists in radiology don't seem to have purple hair, which is a pity.

I'm going to buy a top hat for our receptionist with the purple hair, in oncology/haemotology; she doesnt' seem to have one; either a purple top hat, or a rainbow coloured one.


So, sat down, and before long, basically on time, were into the scanner room

blessed cool air!
= this was 1 PM, so it got so much warmer, elsewhere, later in the day


after having removed..... some of my accruitments - basically just the collar, as they only scan my sort of breasts upwards for this, (I could leave on my wrist band and chainmail handcuffs/bracelets, and the silver-bell chainmail anklet, belt, etc., etc.,; luckily I'd not bothered wearing any nipple chains, or any .. other metalwork, requiring removal....
one tends to get ... odd looks from scanner opperatives/radiologists).
when one has too... err. remove more.... intimate pieces of jewlary/metalwork..... although... it is rahter amusing

just removed my shirt, and luckily having already remembered to remove my wallet from the back pocket of my jeans, spent ages, shuffling about up and down, and side to side, on the scanner 'bed', to get exactly right, for the death-mask to be pulled over my head, and to seal me in my death-chambre

its... really peaceful... and kinda...... very comforting, having the skin-tight death-mask put in position... which... is probably not the typical response to such a thing


Hmm, bit more wiggle inside than I thought one should have had, but positioned myself as best I could; seemed to meet their approval. breathing seemed more tricky this time, but was kinda OK- well, I didn't suffocate, so it must have been alright.

Sadly the scan didn't last very long; I was just dropping off to sleep by the time It finished!

err. hang on... I spend hours unable to sleep in bed, under normal circumstances... so... how... - I'm starting to freak myself out with weird now. I wonder if W would object If I lock myself into the death-mask every night, post-radiation, when I take it home?


So, after the scan, I put the collar back on then my shirt, etc, get my hand bag, cane, put my wallet back into my jeans, etc, and talking to the radiologists/technitions in the scanner room, happen to kinda mention my concerns, and suchlike over the radiotherapy, and my still considering whether to go ahead with rads or not...

this ... seemed to concern them. a couple minutes later, I'm in the coradoor in radiology, awaiting to see a consultant radiologist DR person (registra? I've kinda lost the plot, with Dr titles these days, and rank etc..).


Whilst waiting, who should walk by but.... well, you really can't miss her

My haemotology/oncology registra Dr, the loverly Tracy. (still say she's just envious I can fit into a size 14, hence her critacism of my underwear being too tight...) well, just because she's a size 20 something.... Mind, I'll be soon down from a 14, to a 12, once I get my diet in full swing...


yeh.. anyhow.

so, she asks why I'm there;

so, I say; just been for radiotherapy planning scan; and, that 'they'd made my death mask last time, and so this time was just the scan, and no need to make the death-mask".

She ... yelped
"drama queen!".
At me. for ... at least the second time
- she.... didn't think my use of the term 'death-mask' was .... quite right....
chatted to her a bit; told her was about to see Dr radiologist, as I had concerns over radiotherapy side affects... - quickly questioned her as regards the folic acid I'm on... and
gosh, she recalled that all perfectly - must book myself in for blood test for folic acid, again, at GP this time, and see if I can get it scripted there, if I need it; just ran out. and wasn't sure I needed it- I'd mis-recalled, I thought it was for the penitious anemia I don't have, now, apparently; but, actually it was just because my folic acid was low; Tracey then made some rather rude remarks... about my diet... and my Waitrose addiction... - yeh... she's just envious of my figure bman....


So, the not-wearing-a-spotty-dress-this-time Tracey wonders off, and a little while later, I get to see the radiology consultant/Dr.

Explain my concerns... he explains risk (better than the first Dr did), - I say that sort of ties in with the risk I figured out; amusingly; when I tol him how I calculated the risk; using the data from some large studies on breast cancer; turns out I used the same datasets as him;
see, the area targetted in me, that means that the radiation will hit the bracchial plexus, is the same as in, mainly breast cancer patients; they can't target the lymph nodes under my collar bone without hitting the bracchial plexus; I didn't realise this from the first Dr; thought it was just the weird angle they were using, for the beam, ment it'd randomly hit it...

so. basically, to radiate the lymph nodes there, there isn't any alternative to hitting the bracchial plexus; this, is kinda, better than I'd first thought; I was under the impression from what the first dr said, that the bracchial plexus, was only being 'hit' as a random unnecessary part of the strange angle they wanna use for the radiation; whereas, it is, basically utterly unavoidable, if we/they want to zap teh lymph nodes, which showed up on my staging scan, as also being enlarged/metabolically active, which are just under my collar bone, somewhere, on the same side as the very large lymphoma, which was the palpable one, in my left armpit...
The radiologists, and my calculation of likelyhood of bracchial plexus neuropathy, comes in at circa 1%. (have to alter the breast cancer stats, as they always have higher GY that I'm due).- and of course, its not an exact comparason, err, not least as I guess I am, to an extent at least, somewhat mor emale than most breast cancer patients and, of course, its differnt fracts and gY in each case; but, the stats just don't exist, for lymphoma, per sai...


after a bit...

Dr could see I wasn't quite convinced.... so he got on the phone...

*fanfare*

the gorgeous Tracey enters the room, to astonished cries, of 'This has to be afirst! I didn't realise oncologists/haemotologists were permitted in radiologists private quarters'.

so I made some whitty.... probably unrepeatible here comment about radiologists and oncologists sharing ... the same temporal location... - I think W serabitiously smited me at that point ....
- comment did get a laugh from both consultants/Drs though


so. Tracy has a go .... at me... err, on me, I mean. err, hmm, neither of those versions sounds quite right.


-- she explains their logic, and desire for me to have radiation; they've not given me as much chemo as they'd like; partly as i had to stop the vinblastin after cycle two, and so was only on ABD not, ABVD, for the second two cycles I had; and they didn't want to continue with more cycles; as I was missing the vinblastin, and as I was getting the random infections, despite not being neutropenic;
I pointed out I'd happily do more ABD if they wanted, risk the infections, but, she said no, partly, again, because of risk of infections, and also as it was missing the Vinblastin. - which left the only option the radiation.

She explained a bit, how more treatment would go, if I had it, after going in remission, if I jumped ship before rads.

Basically, due to the way I reacted to vinblastin; they'd skip a secondary differnt type of chemo: which I had kinda thought would be the 'next step' if required....=
and instead, I'd move straight to total bone marrow distruction, followed by bone marrow transplantation.
ahh.
OK.
the.... serious... stuff... no... hm... OK.
and. as stupid as it sounds... when they start talking about remission, etc... and... well, the obvious stuff, like risk of dieing, etc;
I've just ignored that stuff, TBH:
The whole actual 'cancer' thing wasn't ever real, in many ways; I mean, i never really had any symptoms of the cancer, no illness from it, etc...
But. OK. yeh... innit.
Hmm. plus of course, my utterly flippant and ... surreal silly, weird, approach, overall to treatment, etc... and just... maybe I got too convincing, to convince myself, I only went along to oncology/haemotology, to entertain the nurses....

Plus, of course, my knowing that I'm indestructible, and that it couldn't, like, you know, actually kill me, because I refused it to do so, and I'd been told I wasn't allowed to die, too, of course, and... yeh. OK. the past four months, treatment, just bulldozed by in fits of giggles and laughter, basically... none of it, seemed real; not helped, of course, that I can't recall being diagnosed, or having initial meetins wiht oncologist, etc, or that I can't recall signing consent, etc, and... stuff...

Hmm. but...
but... and...

indescision...
I'm not good at making my mind up at the best of times.

err.... OK... so, I can't make my mind up; not helped by my chemo-brain, of course.. and...

so. call me 50/50 split. we'll go out for a vote. - The two people in the world I care about more, than, anything, err, certainly more than i particularly care about myself, and, both seem to think 'yes' as goes radiotherapy'. so... that looks like a win for the 'yes' vvote. so I tell the radiotherapist and Tracy, I will go ahead.

AT least I made a descision err, sort of


Radiotherapy starts.... the 6th, July, i think it is... three weeks, mon-Fri each week, which is 15 fractionations, each of 2 gy, for a total of 30 Gy.


Turns out... in some ways I really don't have sufficient.... self-preservation... or... nah, that isn't quite right... how'd W put it last night... - I just dont' care about myself much at all... or, as he said, 'you need to care about yourself more', or... err, he didn't quite word it like that... I forget now no sense of self worth, maybe.. nah... dunno... something like that,

and. then. very ly, last night... and , I kinda only half recall saying doing it... ;
Was in bed, with W, and my teddy's, including Bee;
Now, bee is by far and away my favorite teddy.
She's been with me, now, since the start of chemotherapy; and, basically... she looks in a far worse state, now, after treatment has ended, than I do even though she didn't recieve any of the poisens I did.
her wings have partly become detached and she's got a hole in one side, that I need to sew up, where one of the wings was attached, and she.... is really quite dirty and, err, in particular, smells of... coconut -
well, she was being constantly cuddled at night, and particularly at the start of chemo, I was really heavily moisturising myself with coconut oil (kinda gone off the coconut a bit, now; though I still use teh coconut shampoo, and the coconut conditioner, I've switched to Lush dreamcream, as my main moistruiser).
So she got... quite heavily moisturised with coconut oil, I guess, from being so ... tightly cuddled to my chest/neck, every night for months... and, she's really quite bedraggled, now
and, probably having several litres of my tears soaked into her, doesn't help, less so now, but moreso months back, she'd regularly have to endure me just crying all night cuddling her, until I fell asleep from exaustion

anyhow... somehow... at some point... I made a comment something like... 'bee will have to be thrown away'... (inconcevable! to me now, just typing that... i couldn't do that to be... ), and, something like 'she's broken, all messed up... and useless now'.... and... then... soemthing like... 'all useless and broken.... just like me....'

seriously?! gosh...
needless to say... I can't possibly imagine throwing bee away - she may be getting a wash soon, and probably sewing up her wound, first and... but... err... teddy bears and demons inside (me) indeed... who'd have thunk it err. dinny realise I ... hmm. kinda had such thoughts in me... really... though there have a few times, been thoughts I'd had, along lines of my wishing I'd not been so ill, with the seizure, directly before chemo, so I'd have better had the option, to pull entirely out of treatment... <alienfrown. not. helpful... <grr. *kicks brain* stoppit. so. not. me.... - I blame the drugs...


Or. I guess. in, some odd, way. one, could, perhaps, say. maybe, , to quote from James Broughton:


This is It
and I am It
and You are It
and so is That
and He is It
and She is It
and It is It
and That is That



Went into town today, with W, bought more of the weaker solution eyedrops (easier and less hastle than bothering GP again, to get those ones on script too, for now; will ask him next time I go). also tried to buy folic acid, and they refused me, without a script... so will have to arrnage to visit GP next week, get a blood test done, and get the folic acid scripted, if, indeed I still require it

after the pharmacy/boots, went to Waitrose... - almost had to turn about, and walk away, before entering; some very.... M&S, looking customers, were near the door... but luckily, I think they got turned away

(honestly... we're relaly not that snobby... we just joke a lot, that we are) <laugh< got a few essentials from waitrose; more jasmine tea, pain au levaine, some brie, and emmentile, and some sausages and bacon (I'd have gone to butchers, but that's in opposite direction, and I didn't really have the energy <puff to get that far today), and, err, think a few other things.... coffee probably, and... hmm.... yeh, sure there was a bit more....
then popped to the veg stall, which we walk past on way home anyhow, got duck eggs, and garlic....
oh, and got more ginger and honey tea, from the shop next to my house, plus a bag of the frozen chicken thighs they do Then W went home, and he'll be back Saturday and Sunday, staying over, and going home again i think Monday...
<zen. - he wasn't going to stay over Wednesday night, as we only had the scan to do which was quick; but it was really late by the time we got home after seeing the Drs etc... - oh, forgot, after the dr/consultations, etc., i went to oncology/haemotology day unit; got to see the loverly purple-haired Andria, (who doesn't have a top hat), and after waiting quite a long while; had the surreal experience; of sitting in one of my chemo chairs! in teh day unit room (the chemo room!); not, to have chemo; but to have my port flushed (needs flushing once a month, if not being used; it'd been three weeks; but seemed good time to do it as we were there; and not
expected back in the general area, until radiotherapy starts, now,).

and... that is about up to now... I guess.

had grilled chicken thighs with green salad for dinner tonight.

Then had an epic bath. with a vast amoutn of Lush stuff, as per
and the dreamcream after, of course to moisturise.

Weighed myself after I bathed.


OK. starting to work; Tracy was most adament I should not try lose weight whilst on chemo. (put on weight due to steroids). i've been self-medicating the steroids of late; reduced their dose, and, as chemo has finished, slightly reduced food portions, etc.

working.
down2 Lb.

from the heaviest the steroids took me up too
about 10 or 11 Lb more to lose to be pre-chemo weight which, is the lightest weight I had got too, since, like I was 16 or 17 or something

Think I'll get the purple satin corset out tomorrow, not worn that in ... ages.... still not entirely sure I'll fit in it but I can try, and, hopefully before long

Hmm. just hesitated there. before deciding I would post this journal. I'm not... useually, that ... err, reluctant to post stuff about myself, of... often quite... well... you know the sort of stuff I mean but, this sort of stuff... well, some of it... just seems different... not really something I'm used to ... even 'feeling' I guess... oh well...

(this wouldn't post last night/early hours this morning; so, err, references to 'today' mean, I guess, yesterday now, as in... err, Thursday, and 'yesterday', I guess, means 'wednesday', as it was... I think. err, is it Friday today?)
(trying to post again now)

took me.... so many attempts, on two machines, before this posted... tired earlier today, on PC downstairs, and uptairs on this laptop, wouldn't post, plus on laptop last night, Hmm. and now it must.... be time for a cup of been...... looing looking at 'stuff' online.... and resisting temptation to buy saving money... for...... going away with William, in a week or so, before rads start, and possible trip aay, away.... sep/Oct, depending... on stuff innit damnit.

Cool old Guy reported the Captcha (local only)
" to hear you got caught by the Captcha

Does it fit purple satin ? "

Are you hiding, Darling? What did you do now? Being naughty? In need of a proper spanking?

Me?! Me?! I'm an though... yes. probably in need of a proper spanking - it wasn't my post hidden!

ahh... hidden post reappeared : oh yes! the purple satin corset still fits if a little...... more filled up than it used to be when I waore it, back before Christmas

[Returning to original subject]

damn... I hadn't even thought of that rubbish rubbish night's sleep. err. well, it wasn't a nights sleep. I didn't eventually doze off any until sometime after 6 or 7 I think, got up about 10 damnit..... and now William's having to do the sweeping and hoovering....... that's ment to be my job damnit.... just too - I did sor out all the old bedding, a whiel back, and stuff a lot more rubbish into the bin, and into the massive bag, that will hopefuly get collected this week coming, along with the old matress Must phone up tomorrow, try book that in to be collected; if I can get that taken away this week, then next week oughta be clear; W and I may try for a few nights away somewhere; I've not left this city, since August/Septber (OK, I have, but the periods in which I did after then leave the city, I have no memory of, so that doesn't really count). just need to get out of this place for a few days - trying to do that before radiation starts, as then I'll be hostage to teh hospital once more; in every day for three weeks so yet again no chance of escape; hence also, why I'm wanting to get this junk taken away now; as during the radiation I won't be able to be 'in all day' for the ppople to come colect stuff

Gona go to the pub tonight I think; I might 'go for it', and have .... two or three pints of medium or weak beer - what the eck has happened to 2legs?

Discovered a hat I'd forgotten about, earlier, when tidying the cupboard in the spare room... well I say tidying; I opened it and .... just decieded it had way too m uch junk it in, so.... left it, but, not before I noticed the hat

Bought another bunch of bath bombs today!; discovered stall on market (we went out for a walk, earlier, after breakfast/drugs) then I forgot to take 1 PM drugs..... and we eere out, so took them at 2.... not entirely convinced I need these steroids for seoncdary Addison's at all... but... guessing risking trying to stop them, right now... would be... foolish beyond .... well, it'd carrry the risk of sending myself into coma... and I really have had enough of hospital visits for now; having a couple clear weeks with no* hospital visits is... so

Did some street performance poetry, whilst we were in town; people walked away from me and gave me strange looks. - it was largely nighoover based poetry. - t the idiots round here.... they don't know true culture when it hits them full in the face, verbally from a mental blind chemo-cancer-patient with a leather trilby and ribbons in her hair! was funny though... if I have gone insane... do you think anyone would really notice the differnce?