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

didja? didja? didja? didja miss me? I was offline for a while... busy... err... in RL

been badgering hospital, now, last few days well, two weeks really, but ramped up the badgers the last two days

due for an op next week, to remove potacath. had to phone hospital, vascular inserts, remind them it needs flushing this week, which they didn't know
so they've bought the op forward to tomorrow
then I hit them, with the blackmail card
not gona have the op, unless I get the results of the MRI scan I had, err, about a month or so agao; no one at the hospital wants to tell me the resutls - no one person left in charge of 'my case', as the entire hospital has no oncology/hematology/radiology specialist nurses, apparently
so, no one wants to... or is, doing nothing innit
so, phoned head of hematology's secutary, left messages. phoned again. left more messages.
phoned endo nurse/sec, too, left messages... etc., etc., etc.,
phoned vasular inserts, told them I won't have, will refuse the opperation they've booked in, unless I get results...



finally.

got a phonecall this morning. from hematology sec, to say.... someone will phone me this afternoon with the results I'll believe it... when it happens....

if not. I'll go along to vascular inserts tomorrow, in time for the op. and then them tell them, I'll not sign consent to the op, until they get me a Dr who can give me the MRI results

because. life itsn't misserable enough with cancer, I guess. kinda hoping the MRI doesn't show any pituitary or brain cancer you know... innit.

right. must get ready off out into town in a bit with W

Seems perfectly reasonable. Stage a sit-in in a surgical gown. If nothing else it will point out in stark terms how unreasonable they've been with communications during your care.

*crosses fingers, eyes and whatnots *

Mind, on the positive side, all the hastle with just trying to get information out of them, kinda not even crossed my mind for a moment to pass a fleeting bit of 'concern' or 'worry' in the general direction of what the scan might actually show

went into town with W, bought expensive conditioner for my new hair do and sugar body scrub oh, and a new tunic/dress

oo. hair cut. did I mention; I've had a hair cut. first one in..... more than twenty years I think; well hair was.... a bit loopy after chemo despite my not loosing it, it'd gone kinda... just weird I guess

OK. so ended up with three calls today, in total, forgot to mention the first, I think; which was earlier wehilst I was in the cafe.... that was patient leiason, who'd entirely gotten the rong end of the stick so had to tell em the right end

at home, not long ago, phonecall from endocrine consultant, to say about MRI scan results.
stick end wrong sent her away.
she phoned back a second time, sort of vaguely saying no sign of lymphoma or adinoma etc, in the pituitary, but signs of irregularity/abnormality aorund it, which might be from infection (well something has to have had made my pittuiary go mentals), anhow, she'd then spoken to my proper endocrine consultant; the big Prof man himself, dear Chrish.... and, they dont' want me to take the port out, a MDT meeting o fthe endocrine gang, is soon, when they'll discuss my pitutiary in more detail, and decide what, if anything needs doing, so the port shall remain for now

sill have to go to the hospital tomorrow, mind, to get it flush

so phoned vascular insett, to tell them no op tomorrow, just a flush for which we cna pop into them at any time,

So, yet more of the left hand not knowing what the right hand is doing.

Well, at least there were no signs of lymphoma or adinoma etc.

But the lack of proper communications must be very frustrating indeed

yep... I am kinda pleased too, that there isn't any more evidence of cancer - I do want them to decide it shows 'something' though; on the MRI:

logically; there has to be a reason, and an underlaying pathology, which has caused my pituitary to fail so utterly; lacking ACTH and possibly upset ADH secretion, plus messed up FSH and LH (which ment I stopped making testosterone), etc., etc., oh, and the missing Insulin like growth factor (due to start injections of that too, at some point I think).

I'd kinda like to discover, now/soon, what that underlaying pathology is; hoping its something more 'mechanical', like a simple hemoridge into the pituitary or soemthing, rahter than another damn cancer - kinda don't want it left, as just an 'unexplained' thing, which, might then of course, continue inexplicablly to work away behind the scens, until at some random point, presenting with something that is notacible enough to produce a diagnosis.... - hopefully the the pituitary multidisaplinary team, when they meet, will figure it out - no idea if the patholgy itself will require any treatment; for that reason the prof wanted my port left in natch

well, went into hospital today.

Saw the loverly hildaguard who stucka big needle into my chest, and flushed the port through - oddly it didn't bleed back at first, but then it cooperated

Hildaguard liked my perfume I told her my theory, and logic, in only wearing female perfumes; that is, female perfumes are designed to smell nice, to males..... I'm male, therefore I like female scents/perfumes no... really... that is a bit of logic that is corect

Then wondered into oncology and saw our loverly purple haired receptionist, who dotes over me who liked my new hair do and aclled me fat!; My shoulder pads made her think I had put more weight on

talked to some Mac nurses, one of whom wanted to steal my gorgeous red beaded jacket I was wearing receptionist then said she's always expecting me to turn up the next time she sees me, with me in a dress an dhigh heels

talked to Mac nurses about post-treamtnet stuff, and got some information on things, then went over to the wallace center, where they do post treatment stuff, talked to someone there, about things and shall probably start yoga soon, plus maybe mindfullness classes and err, the weird exercise thing startin with 'p'... platats? polartas? polartaz? whater4ver innit

oh, and may see their nutritionalist/dietition.... - stuff I could have done with during treatment really, but ones' head is too messed up to have handled such things then I think

loverly sunny day.

did something I've never done before!!!!

---

felt, sunshine; on mmy neck at the back! - all my life I've had hair, i.E., my pony tail there! very... odd

Celibrating Croation indepednence tonight, with a Chinrse chinese takeaway. err. seriously.

feeling cat-like.... weraing cat-bells on the collar this evening pub later for a beer, and to read through the gazillion leaflets we got today from Mac nurses and the Willace err, wallace? place

Of course I understand your desire to know what is wrong. I hope the pundits find an answer soon

Meanwhile let me be the first to wish you Happy Croatia day!

you should be my doctor!!!!!! - seriously... all... none of my consultants... seem to 'get' that! like dealing with a bunch of pre-O-level students IMO only one who's remotely like a scientist, is the Prof in endocrinology... I like him a lot he's like a real scienstist innit

Choosing me as your doctor is the surest sign there's something wrong with you

I can't even heal myself (but don't worry, I'm okay for the time being and there are no signs saying this should change anytime soon)

But I thank you for your vote of confidence

I missed ja.
I'm very impressed (as usual) with your attitude to life. I'd have been staging a sit-in weeks ago. A lifetime of being friends with consultants in high places overseas (I've taught some of them English )
means that I expect to be told what's going on before it happens, while it happens and after it happens. I probably know too much for my own good, but my current GP's practice is pretty good (a lot of my neighbours don't agree but they don't have over 40 years of asking pertinent questions.
Good luck, as ever.

insert missing ")"

I would be asking a lot more pertinant questions, were I able to have a person to ask them too.

The main problem, since Febuary as it turns out, is that I don't have a singl epoint of contact, and, in fact, I don't have any point of contact; basically now, to try contact anyone at hospital, means to go to GP and get him to do it, or, to go through the patient leiason service (who ain't always that sharp TBH)

I'm ment to have a specialist nurse; my first one went off sick long term, afte rthe first time I met her (a coincidence? - or I made her hav ea mental breakdown, not sure which).
The second, who I didn't know was my then specialist nurse, eventually went off sick long term to (just at the point I discovered, by chance, that the first one has been abscent for months, and the second was ment to then be my nurse)

now, having had the final clinic meeitng, the hospital think as far as they're concerned I'm done with, finished, etc... so its even harder getting any sense out of them; yet, I'm sort of still being an 'active' patient, at least as far as endocrinology are concerned (endocrinology are a lot better, and I've got my loverly loverly Nurse Julia who I can phone; she's the nurse who turns me on (OK, by which I mean she's the one who injects me with testosterone!)

But. with the MRI; it was sort of an endocrine thing; looking why my pituitary ain't working; but its sort of oncology too, as one of the causes might be a neoplasm, but, so, it ends up between oncology endocrinology.... - no single point of contact again and etc

that is of course all but one thing....

I'm kinda mor econcerned in some ways, in the post-chemo-treatment etc, stuff; I want arms that work again. yeh, they kinda do, but I dunno if they're ment to hurt this much, or be so wrecked that they have such alimited range of movements.... - again no one to ask as they're 'finished with me' as far as they'r econcerned.

so, ence the yoga and polartaz classes soon (however its spelt), to try get my body working again and regain some fitness and strength back into my back and arms etc

plus this whole I'm ment to have a 'care plan' in place thing; without that, I'm guessing its tricky for contacting right people etc; plus GP is ment to have that, as it tells him exactly what treatment I've had; also I've no clue what symptoms I'm ment to be telling GP etc about if they appear, which is stuff that oughta be in that care plan thinggy... - E.g., I don't know what symptoms to watch out for, which may indicate I'm entirely losing left arm use/function if the bracchial plexus was/is wrecked by the radiation j(I so don't want to lose my left arm, that really wasn't part of the deal when I signed up to treatment).

yet. and amusing...ly... now, at the end of treatment, you get more of the truth; basically they're attitude, taht I found yesterday, which they don't reveal at the start; "yeh, well, you've had treatment, your ment to be entirely wrecked and distroyed and disabled for life as a result of treatment; yeh, we just don't tell ou that beforehand".

which. makes me a little cross. - knowing what I do now, I'm not entirely sure I'd have consented to treatment, were I fully in the picutre before treatment began, as to the likely and indeed, as they now reveal, expected level of disability post-treatment. - neuropathy, cognition affects, etc., etc., - though now I'm here, 'this side', I guess I've just gott atry get myself back working, as best I can.

As the whoever I was, up until January this year, is dead; I've also kinda now got to entirely reinvent myself, as I'm not that person no more, and find a new person to be, as I can't inhabit the space and mindsset of that person who was me, who died.

oddly. or perhaps not, I've a feeling the new 'normal' and the new 'me', is, if anything, just... more extreme than the former me what did die.

Even the receptionist with the purple hair in oncology is noticing my cross-dressing more and more each time I visit - this time she said she was supprised I wasn't in high heels and a dress...

and now. for entertainment.

boy/girl with perlipheral neuropathy in her/his fingers, attempts; sewing! - this could be fun! I'll let ya know how much this hurts!

I'm so sorry. I know life isn't meant to be fair, but it doesn't seem right that I've only recently got things wrong with my right hand and that neglect of diabetic symptoms for the first few years doesn't seem to have produced neuropathy.. I'll keep the fingers of my left hand crossed for you and will be interested to know how the sewing goes.

Don't forget, I've probably had wildly good sense of touch, feeling, etc., in my hands/fingers, for so long, I'm just used to it, even, now, with the neuropathy, I'd not be supprised if it wasn't better than some peoples sense of touch, who've not had neuropathy... - main problem really is coordination; less the 'sense of touch', - more the 'feedback' from my hands; I can't always feel how much pressure for example I'm using; If I sweep upstairs, and downstiars, and then mop the same, now; I get blisters or calouses, from holding hte mop/broom too tight! - simularly, that does make me more clumsy than I'm used to be; which more than anything just tires me out mentally always haivng to think about what my hands are doing in a way I never used to have to think; supprisingly a lot of stuf, which I can't feel, doesn't matter!- my hands just know how to slice cucumber, etc, cheese, etc, or finely dice a garlic clove, - even though I can't 'feel' the feedback from what I'm doing, as it were, they more or less come out OK - I guess just haptic memory in the spinal neurones to the fingers/hands does it automatically!

-- like, a good example, the hook and eye fastenings on my gorgeous red beaded jacekt -- if I think what I'm doing; try to feel what I@m doing... I can't do them up at all - if I just don't pay any attention to what I'm doing I can do them up, one handed, left or right handed...

the oddness comes, with the sense of touch stuff, and finding relaity. reality;

E.G., if I touch the scars on my forehead, (from years and years back), they feel differnt with every finger I can touch them with; I have no idea therefore, which is 'real' as it were, and this can to a greater o lesser extent apply to everything if that makes sense... - its hard to discribe, I guess as my sense of touch is so much everything to me, and trying to expalin taht, as I have endlessly, to Doctors, who can see.... just they don't get it - as far as they're concerned, I can do zips, and buttons, therefore my sense of touch is fine really...

Got cool this evening, had to put heating on, just so I could feel enough with my hands to cook dinner... only one noticable burn from cooking > which is good

Sewing.... went supprisingly well... - more advanced sewing really than I've done in years anyhow;

new blouse, the ends of the sleeves were too tight for my arms - cut a slit in each, about an inch or so (to the end of the hem), turned back (inside), pinned, then sewed them

took about an hour, and, well, nearly two hours, and only thus far got hte one line of sewing on each, but, more or less right I think... - I went somewhat frestyle, as it gives them a funky kinda almost rooched/pleased pleeted kinda affect

next, gona sew the secons line of stitching on them, to make sure its secure at teh top end; and may add some beading to it, as i go - now I've got the first line of stitching in, that oughta be a bit easier I think to do

may leave the buttons onto the jacekt for tomorrow (need to use the leatherwork needle to sew through the leather on that jacket), and also probably leaving the sewing on the trousers until tomorrow too

I really... really... hate now being so damn slow at everything its so not...

hmm.

its so not the 'me' that was. if that makes sense... I'm tring to adopt a more zen attitude, as just getting cross with myself for stuff I can't do, now, and for not being as quick as I was, say with cooking etc, doesn't really help me much I ugess, and I think esp if William's about it can upset him, when he sees me getting annoyed with myself

Mind. on the positive side of things. the testosterone injections seem to have some added benifits.... err.... - beyond 'fixing' the recent complete loss of testosterone production, I've ... seemingly got higher levels than, perhaps I've ever had oh. yus.... I might not yet have full energy to take advantage of.... it... but... I made a damn good effort at doing so, over the long weekend, when .... I had the visitor here

I'm still tempted to go to counsiling. just to ... see how long the counseler will last with me, before they scream for help

Pilates - (pronounced "pih-LAH-tease" or for you, maybe pillow-tease)

It sounds like a Spanish word, but it's named after some German dude.

yeh... think that's the one ment to help our back I think ... may or may not involve funny exercise thinggies on a big inflatible ball - your ment to keep a straight face during exercise arn't you? oh... lordy.... BoB protect us... or at least protect otters from me... or... even others... and otters, obvbiously, they need protection too, I guess...

Followed up my sewing success earlier, by modifying a chain collar I wear of Sir's, for him, so its tighter, and lockable ouch. damn fingers.... but did it - would have been easier with the right tools... but a certain degree of brute force, even though I've not got much strength, fixed most of it right may modify it more, though, tomorrow... not satisified with the O-ring on it... needs to be... differnt somehow... and maybe the chain could be a few links shorter now... what can I make with the leftover chain links

Bed soon I think... some of my ideas now are frightening me a final cuppa camomile tea, then bed

"new blouse, the ends of the sleeves were too tight for my arms "

No need to blush at that - I think it is becoming a known fact that clothes manufacturers are saving money by reducing the amount of cloth used in sleeves... I know I'm a wheelchair user so my arms are more muscular than most people my size, but even so surely they should take account of people's arm muscles when designing an outfit. My partner had a similar problem with clothes in her size, too...

It's probably the new fashion for people who like skinny jeans to have skinny arm jeans too, but I need clothes that are practical as well as looking good*...

*for my definition of "good"

ditto!; my defination of good too!

well; the sleeves are fine; the 'width' of them, etc, for the armpits, top of my arms, etc, but the very end of the sleeve, was too tight by the time it was half way up my foream! - only on my forearm mind, adn I'm not exactly muscular, (esp after loosing so much muscle tone during chemo)

I mean... come on!; its a size 22 or 24 blouse!; that should* be a 50 inch chest size!; surely one would exect the ends of the sleeves on that to have a diameter greater than 6.5 or 7 CM! (it caught on my forearm about the same place I can just slide my bangles up too; they've got a 6.5 or 7 CM diameter, as I measured them!) - the sleeves are kinda more funky now though... thanks to my ... not very accurate sewing... sort of pleeted and frilly/rooched - they'll look even better once I've sewn a few dozen various colours of glass beads onto each sleeve - the blouse already has some beading, about the neck line (its a tunic top so no buttons), - its black and white (I can't have everythign in my wardrobe bright colours, apprently!) - it was another charity shop rescue - may have to brave the crowds again today to raid the charity shops; on the current look out for more bangles (tricky getting them big enough to slide over my hands), more blouses, natcch (but only cotton or linen so I'm quite picky) maybe another pair of trousers (size 14) as I'm now loosing weight again, I'll get even more incredulus with my sizing; my chest size never seems to go down, so guess I'll always be a 22 or 24 at the top, but my waist is only ever shinking again now mind, if I can lose a bit more tummy or put my corset up tighter I might drop to a size 20 I guess for a top - mind, its starting to get more wintery.... so maybe I should start looking for a few warmer items to wear... - mind, I do have the gorgeous woolen coat I got back at the start of chemo/end of last winter, which is loverly and warm (and a female one, too, of course) - running out of wardrobe space though; but there are an aweful lot of male shirts there, left I can start discarding now.

Whatever this new 'me' is, its seemingly not dressing male very often anymore - though, oddly today, I'm entirely in male clothing ! for soem reason, in a short sleeved linen shirt, which really isn't right for the temp today - no sun like yesterday but I guess if I put my gorgeous beaded red jacket on over it hmm... maybe I need more jackets... those 3/4 sleeve ones are perfect for me, not least as it gets even colder, I can always wear a coat over the top of them
and, well, now, of course, I can justify wearing tights/stockings/pullups on my legs, because of the neuropathy in my feet... its to keep them warm, honest...

William here soon, then off to the pub nearby (no booze), -they have their pop up food thing, on in their carpark on a Saturday

Was up so late I missed having any breakfast just took hydrcortisone instead and a pot of coffee, of course

Woke to find myself still tightly gripping poor bee to my chest (teddy bear), and with a looming smileying ladybird looking down at me, from William's side of the bed - a unicorn wearing a tiara and a slave collar, staring down at me, from the end of the bed, high up, on the shelf, between the two speakers of the HiFi, on top of a pile of other teddys.... (penguine, bear, rabbit, err, not sure what else in that pile)

just a pity there wasn't quite enough room between the two speakers, to put my radiation death mask that I have now, there, a lifesize deathmask of myself, weraing all my ribbons, looking down on me in bed.... that would be... so 2legs afterall - must get the drill out, and get somewhere on the wall in the bedrom to hang the deathmask, its still in spre room for now