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

nah. not gona say anything. Just wanted that title



Towels.

I have lots now. more than even I had before, more, even, than I believe, is needed by one person. but, a quantity, which, both in its asetical value, of beauty, and its functional value, in aiding hygine, in my curent requirement for aseptic/sterile living, has both function, use, and, something else besides

I washed a lot of them today.

Well, about a weeks worth. which is a lot, since I'm having to change them very frequently, for hygine reasons, and infection control - especially tea towels, and flannels, and hand towels; although, the towels of which I speak, pertains, exclusively to those that do not include tea towels; for they are kept in a seperate place to other towels

I rearranged the cupboard, top boxes, where I keep the towels, and bedding.

Rearranged bedding, first; well, after dusting inside of the top boxes, the shelf had got a bit dusty at the back (of course, this also ment revealing a pile of junk; 3 pin adaptors, 2 pin adaptors, and a shockingly large amount of those attachment bits, y ou put on hairdryers; I seem to have a lot of them, despite never having used one)

anyhow. cleared the top shelf; bedding neatly at one end in one pile for now; bath sheets (I didn't own a bath sheet, until what, a week ago? now I have a couple, purple, of course) bath sheets... then next to them bath towels... a pretty massive pile of bath towels actually... some purple, some green, some a sort of blue.... then, next to that; at double thickness, hand towels; again, purple, blue and green ones.
Next to that at the end; a three deep pile, of mainly purple flannels - can't go too far back for storing things in the top box; I can only reach the back if I stand on a chair, - there is no chair upstairs, so I have to carry one up from the studeo - I can almost reach the back, by standing very precariously on the wooden bit at the end of the bed, but... even with my lack of sense, it seems a little more dangerous than I'd like with my current unbalanced state of nonbalancinglyness.

almost fell down the stairs today - well I was carrying the wooden chair back down, and misjudged how far I'd got... could have sworn I was on the last step


Read the letter today, that we should have gotten, four months back. its complicated.
a. there is a massive amount of scaring on my right side of my brain; from the 93 accident, - I kinda knew that... this makes looking at stuff there, awkward, I can see it would...
b. when I had this first scan, following the fit, they didn't get a clear immage, as I wasn't very still in the scanner (I can't even recall this mind, I guess I was... unwell, maybe...)
C. my knackered sinus is still knackered on that side, but possibly worse than it was in a scan from 2008.
d there is a bit, they were concerned might be related to lymphoma; and they asked for a 'follow up scan' (putting it in capitals, to say perhaps, this was kinda important).
C. but, then they say, this scan was discussed with haematology Drs (hence oncology) so perhaps they do know about it; maybe, even there was scan of the brain, done at same time as an earlier PET scan, before chemo started; or the midway PET; though I got the impression, from radiologist, those only went like up to my neck...
D. there is most definately something funky with my pituitary, and/or supraoptic nuclei; I've kinda thought this for years; this would tie back to 93 too; probably; and also with my secondary (as they now say) Addison's; as that is related to teh pituitary or/and supraoptic nuclei.
E. typical. - could this get anymore complicated?
F. really must watch my fluids, though they said last time I'm fine to up them again; more and more I'm convinced by the idea of my ADH being knackered, which is also hinted/stated on the mysteriously re-matterialised discharge letter... - that'd either tie in with the pituitary, or supraoptic nuclei... - just kinda hoping that is a seperate kettle of fish; I.E. I've some funky endochrine 'stuff' going on, - entirely releated to the physical trauma to my brain, in 93, and 94; and, not that its some funky lymphoma related stuff; pituitary cancer, brain, etc, that'd be... quite a bummer. -= I just don't like the 'coincidence' that this stuff, seemingly dating back so* far, only suddenly came to light, when I got lymphoma... but, the alternative... is kinda worse... so perhaps a coincidence it is... or, just taht the lymphona elswehre in body, was sufficient to physically stress the organ systems, throughout my body sufficiently, that it was the cammel that broke the straws back, in terms of suddenly making the pre-existing pituitary/supraoptic nuclei physical dammage, and physiological non-functioning, suddenly come clinically presentable...

-- problem is... =- which the heck bit of the hospital does one try to get such a complicated web of pathologies sorted?; in general... they just don't handle complicated stuff well - other additional bits of fun; Pituitary/supraoptic stuff, plus hormone abnormalities, could oddly account for eye problem; mucus membranes being dry; apparently, and, that could also account for another side-affect I'm getting; which I was kinda just putting down to chemo; actually; chemo probably dried out mucus membranes, including those in ducts, (e.G., tear ducts etc), so, 6 of one.... half a dozen of the other... - bleh.

so. I'm gona have a long hot bath.

with, either I think, a rose queen bath bomb, or a sex bomb... = not sure which melt to use, yet

feeling quite bleh actually.

Well... if nothing else you're sounding much more coherent, less fuzzy, chemo brain than a few weeks ago. I suspect some of your health care providers are due for a stern talking to and a big session of "where do we go from here" considering that letter.

I'm kinda hoping, if it is a major overlooking, of what should have been done, then I'll be able to get to see the 'big guy', - the head oncologist here, who deals with lymphoma and leukimia, is supposidly one of the best in teh country; he has co-wirtten all the NHS guidelines on lymphoma treatment protocols etc... = obviously one doesn't get to see him very often, but I did right at the sart (I vaguely recall that I think), ; since then just get the more junior drs, consulstants etc, though thesedays; the move has been, sadly to do away with things like titles etc; one never has the faintest clue if your speaking to a docri, a nurse, or a cleaner. seriously. - that annoys me a lot; a couple times I went in to clinic, and spoke to 'someone', - I didn't even realise it was m y consultation. - hence didn't tell them stuff I should have,

- my t yping is pretty crap; esp on this PC; not becasue my typing is bad per sai; but the speech I use on this one, is basically broken as its decades old, and it doesn't work well with teh web browsers; I can't edit back anything I type; so If I mistype a word, I can't really delete it, or edit it to spell correctly ; plus, partly maybe its my typing; as this is a new keybaord, only got a week or two back plus, maybe still some affect of the neuropaty; looking increasingly like I'll never get sensations fully back in my fingertips; to be honst, this is something really messing me up; the world to me; via touch; its real no more; as it doesn't feel as it used too; utterly screwing up my brain ; I can't properly feel myself, even, or, I don't feel like I used too... err, hard ro discribe really. - I may be getting more sensation back, eventually, but, its a while now since I came off the vinblastin so, not sure if they're is much recovery yet to happen in my fingers./sensations.

Problem is, if people at hospital need chasing up, sturn talking to , about the letter going missing, I can't do it, I don't think I've the strength; or, rather; some days I do, some, I just don't.

I'll try though, see what I can get sorted wednesday in clinic, once we've delt with the other stuff... - it'd be so much easier if the hospital could communicate in any meaningful way. - half the bloods I should have recieved copys of, I never got, some then appeared, weeks, months later, when the information is of sod all use (if I know what my neuts are doing, and TWC I can at least have a clue of where my bloods will have been, post infusion, and hence how cautious or not I needed to be, with hygine and sterilisation).

If, as it is said to be, I'm being treated at teh regional centre of excellence, it certainly explains why the rest of my family always die from cancer, when they're treated at more regional/local hospitals, where the communication and clinical bits, are just dredful. - Its still diagnosis that is the wrose, though it does seem, I hope, in my case they got that right at least, on the cancer side of things; though how I diagnosed the endochrine stuff, correctly, four motns before the endochrine clinic did, is a mystory; they had access to blood results; I didn't... so why the it takes them four months to figure out what I already had, just by observable symptoms and patient (i.e., my) history, is... I'm getting fed up of dealing with idiots. everyone I deal with is an idiot.

housework. I love doing housework. but... I'm just so damn slow and clumsy now, thanks to the chemo do hope that passes as well, its kinda messed up my spatial aweareness and balance id
sn't what it should be, plus of course, not having full sensativity in my fingers etc, feeling waht I'm doing... - I think they heard me yell at a problmatic sheet I folded a bit ago, at least two countys away ; ahh, well really I was yelling at my fingers/hand, for not being as coordinated as they should

just did some tidyingcleaning in bedroom, and rest of upstairs, plus in kitchen and utility room... damnit, and it took an age, to do sod all really, and now I've got to have a break as I was getting.... really kinda passing out-like no idea why that occurs, I keep telling doc, they ignore me. I thought it was blood pressure, being so low, but when I saw GP it was normal, so he just didn't seem to care either. starting to wonder i it might not be blood pressure though, precisely... possibly more related to the SIADH (pituitary adh thing) but I cna't quite qork that out in my head, to decide if it could be that or not damnit; and of course, every thime I have a break its a cup of tea, and I'm probably drinking way too much fliuds... fluids...

Thyroid?

no but yeh but no but yeh but no ... but...

it gets kinda compliated;

was told, months back, in oncology clinic, by good* doctor, that I did have hypothyroidism; this was the first time she called me a 'drama queen' : as soon as she said It, i immediately said, "hashimotos thyroiditis!" - she'd seen it on my electronic notes, one assumes from Endochrinology; about the same time.... or perhaps a few infusions after, they decided I had penitious anemia, and the oncologist, scripted me the folic acid (I'm still taking that).

anyhow; nothing at all was done, or mentioned again, about the thyroid....

two weeks ago, Friday, coming, I finally saw endochrinology;
this was when, I was told;
I don't have Addison's ; I have secondary Addison's; Addison's proper is an autoimmune disease, but the secondary addison's, is related to pituitary misfunctioning.

I asked him about the thyroid; he said no signs I've got anythign wrong with my thyroid......

he then said I don't have penitious anemia (I forgot to ask whether I should stop the folic acid, or not...).

so; no addison's, and no penitious anemia; and no hypothyroidism; all of which are/can be autoimmune diseases; kinda happy not to have autoimmunity; I could then have loked forward to getting a whole host of other often coexisting together autoimmune diseases; diabetes, celiac disease, RA, SLE etc... - even though autoimmunity is my masters degree stomping ground, I'd rather not investigate it, first hand

now; having got the discharge letter from jan/feb; that says I've got SIADH; also related to pituitary abnormality;

pretty sure; have been a while, that I've got pituitary weirdness, err, it kinda explains, some of my..... duality in male VS female hormones (kinda be interested if they measured them... don't think thye have ) ; and, my pituitary being dammaged back in my accident 93, is not unreasonable; but, gosh, that quickly gets complicated;

now... I really must spend some time soon, reaquainting myself with endochrinology, and the pituitary in particular; I kinda recall the basics, but not wildly accurately I guess, or in as much detail as I know I now need to unwravel this little..... complicated mess of things

Pituitary amongst other things, releases hormones ,that make other endochrine glands, release their hormones, of chief note;

ACTH ; adrenoCorticotrophic (hand on, what's the T stand for? I can't damn remember) hormone.
ADH - anti diretic hormone.

first of which explains the secondary addison's, if I'm abscent in ACTH: adrenals won't release cortisol, amongst other hormones, properly.

The latter, affects water reabsorption in Kidneys, err, which I've kinda forgotten how it works; but, that explains my weird low sodium, back when I had the grand mal seizure; and explains why since my accident in 93, I've drunk so much water each day; about 9 pints of water, or more, I guess i was drinking, plus tea/coffee etc. - though why it took getting lymphoma before tha tpresented as clinical.... still seems a bit odd....

now; from memory mind; pituitary also releases TSH; thyroid stimulating hormones, which, like the other two, causes target endochrine gland, to release its hormone[s]; in this case thyroxin and triiodothyranine....

so.

my thinking, ; for which I need to re-learn some stuff, and learn some new stuff, or to a greater depth, anyhow, is, that my pituitary is somewhat knackered from my accident in 93; and so its not pumping out all its hormones, and stimulating factors, like ACTH, in the way it should; which is giving me these weird collection of seemingly random endochrine problems, elsewhere; but, ahh!; just recalled; endochrinologist said I didn't have any thyroid immunoglobulins; I.E., no evidence of autoimmune thyroid disease; which was their first though; but, he didn't say about either thyroid hormones directly, or the TSH from the pituitary; gosh... this is way too complicated!!!!

Hmm, now, I'm guessing there may be other things pituitary oughta be releaseing which may be messed up; but, my medical/biology background is hazzy now, about pituitary functioning.... I do need to go learn it again!; I think it does a few other ones, like ACTH/TSH, which affect other endochrine glands, plus ADH, we know, and, oxitosin, not sure if there are any others... i must go check...

Endochrinology are so slow though... my next appointment isn't even until Autumn.... - and they've not done any other tests, yet.... - shall have to try jolly them along; pity, the prof i see there, is fabulus... a real mad scientist; I get on with him like a house on fire ; last time I saw him, about two weeks ago; W didn't understand a word he and I said, as prof knows I've a biology background, we just talked in our funny language of abreviations and ... suchlike ; perfect fo rme, I find that a lot less hard work than haing to deal with doctors who use.... 'baby language', as it were

I was a bit... fractus err, almost the word i want, earlier today. chilled out as day wehnt on though <zen. - did lots of houseowrk, felt faint whilst doing most of it, and felt close to passing out a few times.... but, got it all done, even if it did take far longer than it should have

bath in evening, after a gorgeous dinner - Polish fried pierogi, and kielbasa, with mushrooms, and cheese, first time I've had that in ages... was so good...

had a phonecall with W after the bath and relaxed nicely now must try reading up on endochrinology, tomorrow I think, get up to speed with what I've forgotten, and stuff I never knew, and learn it to a bit more depth than my simple undergrad vague knowledge of it...

...just thinking, when you're in a mood to do some serious writing for the guide, you might consider a basic primer on enochinology...

I agree with the assessment, you're much more coherent now, and the thoughts about pituitary issues and secondariy issues from it are really really interesting and make a lot of sense. I do hope those endocrin bods hurry up and take you seriously!

ahh; endochrinology are brillient!; they're most definately taking me seiruosly; I love the Professor guly; who I've seen both times now I've been; he's not only on top form in terms of his knowledge of the subject, (I can respect him, as a scientist, which helps one heck of a lot), but, he's able to communicate ; having realised I'm of a sceintifici background, this means we can talk in real words about what the subject is, and so can get no misunderstandings or anything, as we're both using the same language, whcih is the language of his profesion.

Additionally; he's really really turned on to endochrinology; it excites him; he's interested in it; I'm guessing I've got the top prof guy both times, because... to put it mildly, my case is.... 'interesting', and not a standard run of the mill boring endochrine problem - its just they're slow, this is due I guess to their workload, how many people they've got to see, etc.... - I'm definately getting better, cognitively; next time I see him, we can have a proper scientific chat about it all (I'll ahve gotten back up to speed, and beyond by them, hopefully be on the same level of understanding as applied to my specific areas)

- its a bit of a cross-disaplin thing, though, so its gona be awkward; if I can persuade them to do the CAT/CT scan, to follow up on the Jan/Feb discharge letter, and determine weahter I have lymphona in the brain; at the same time, they oughta be able to snap a bit of a close-up of my pituitary and suchlike; can't see why not; its just, getting the information out of them, that is the problem; last clinic, for example, I finally got an answer to a question I've been asking for three motnhs; have they looked (in oncology), at my PETs, and ruled out secondary l lymphocytic infiltration of the adrenals.... - finally actually got a straight forward, absolute, no quible answer, (which was no, I don't have that, thank BoB) - yeh, it was unlikely, its kinda obscure and rare; but I seem to be specialising in obscure and rare pathologies right now

odd thing is; I find this all so terribly interesting and stimulating and ... sort of intersting from a science viewpoing; I forget entirely half the time, its my damn pathologies I'm talking aabout - yeh... baby... I@m that cool abou ti...... honst... well... soemtimes I am



three days on the melatonin.

I think.... its helping - another thing I wanna check out big time; see if there's an association that makes logical sense, between any pituiary/supraoptic nuclei, stuff, and sleep.... I've kinda got a feeling there could be, but I am still so rusty, - oo guide entry on endochrinology would be cool; inroductory one, then possible individual ones (E.G., article on pituitary, adrenals, thyroid etc; depending which are already covered or not, of course) - I so nearly did my masters in endochrinology I've always found it fasinating........


"May you have fasinating pathologies" as..... someone probably didn't ever say

oo. I think I'm a bit obuncy today; and I don't think its the steroids (I'm very naughtily reducing my dosage.... yeh... yeh... I know.... self medicating kinda, but I'm only reducing back to my origional dose, ATM: may then sneakily reduce a bit further; if I've time before rads; I'm then expecting, if the rads hit me hard, I'll be upping it a bit anyhow; as I'm getting to feel..... less normal, I.E., mor abnormal... I.E., my 'normlal', I'm getting better at juding my body and what's going on, if that makes sense)


loverly quiet morning, but got stuff done;

up, coffee on to brew (yes, I'm monitoring liquidds again now, and reducing), - took drugs, and put in eye drops and eye gel whilst that brewed, had coffee, then had a light breakfast of toast and butter; finished coffee, did a little light/gentl things; put laundry away, moved a few bits out of the bedroom (teddys); ready for arrival of new bed tomorrow threw TXTs back and forth with W and, now its time for lunch, and s second hydrocortisone, and probably some more eye drops/gel, then I'll clean kitchen/wash up, so that's done for now, until after diner, or after mid-afternoon tea. - once I've eaten, done drugs, done kitchen, I think I'll do the extra sorting out in my bedroom; there are a few clothes, I want to store away; some thicker winter shirts, the jeans, which, temporily I can't wear (I'm so fat now), and a few other bits; to try clear enough space in wardrobe for W to put some things in there - I can store them now behidn the new bedding/towel storage area, at the top of the topbox, (in the bit thats tricky to get in/out of) then.... then it'll probably be time for afternoon tea

after that I can turn my attention to reading up on endochrinology; shall probably take notes as I go, which can then form the basis of the guide entry - I wanna go back over the sb basic stuff anyhow; just check I'm reading from the same page as my mad endochrinology Professor...

He really is like a mad professor... =- anglo-Indian I think, though I didn't pick that up by accent (William told me), and... yeh, just quite insane.... - he even wears the appropiate cord trousers! - so wish I'd managed to get into a scince science field/job post my studies... - still thinking I might become a student again, once I've finished with this cancer laugh.... - maybe a PhD, maybe skip fields, from immunology, to endochrinology, that oculd be fun; they do a lot of research stuff at teh dndochrinology dept at teh hospital here; so I could have my mad professor as a PhD suprrvisor!

Seem less achey today.... - which is good, asides anything, I'd fear if I felt more, or overly achey that I was reducing steroids too much, its a good indicator that I'm not overly low on them, I think... = still hoping I might have a three week holiday, before radiation starts, I might actually have some recovery from chemo kicking in by then, which would be nice... hmm, I.E., not start Monday coming, but the following one... - they may do that anyhow now, if they've got the stuff from my GP and are wanting to get me into a scan again for the delayed follow up to the grand mal seizure

hmmm.... odd, I find this stuff so interesting, I kinda forget its my damn body 'detachment' is my new middle name, perhaps right... must go get food.... eggs I think

I read just a phrase recently, about non 24-hour sleep cycle insomnia, often happening to blind people. Usually having a longer than 24 hour sleep cycle, and feeling constantly jetlagged and out of it. But I didn't read up more than that. And also, I probably mentioned something like it before. I just keep thinking of you when I come across it.

yeh; its most common in the blind, due to lack of recieving the signal; seeing evening blue/green light I think it is; which resets the 24 hours clock, to 24 hours each day;

Basically; in everyone; we've each got our w own 24 hours clock; only, its never actually exactly 24 hours; each day, at ducsk, the clock is reset; to ensure it runs at 24 hours, and not at 25, or 22, ec; there are specalised receptors in the eye, that just work to pick up this light, and communicate it to the brain; they make the body release melatonin, which resets the clock, each day;

if you don't get this resetting, each day; the clock moves out of sync with actual day length/time, by the same amount each day; so, if one's clock actually runs 24.5 hours; then its moving forward by half an hour each day; until, I ugess 48 days later, it syncs up perfectly again!

NOw, I do get a very tiny bit of light perception; but, even so I'm considered in the 1% of blind people who are totally blind; but of course, the bit of light perception I have, might not be the bit, that resets the serkadian rychem; hence, a melatonin tablet each day, is to take this role over, and reset the clock ; well, that's the idea, as I undersood it

I've no doubt gots lots of otter things, screwing up my sleep;

if I've got the SIADH; I ugess having a perminantly swollen ollection of brain cells, might cause agitation whihc wouldn't be condusie to sleep... - all the chemo drugs screw with everything; I guess with sleep too - the hydorcortisone I'm taking can; but I take the last one fairly early; 6 or 7 PM, which should* mean that it doesn't interfewr with sleep - I dunno... maybe? I don't think I am... maybe I'm a bit ... preoccupied by things, maybe even a little stressed/sorried.... - I don't think I am... but, maybe at some level... that might not help I guess...
Oh, and, maybe at the moment, the body-breaking cramps, and joint/bone pain might not help much... don't know... - I don't notice them most of the time, they're just 'background' really hmm.

you'd thiunk I was ill or something.... - something I'm still very much denying

I just listened to a radio program from NPR (National Public Radio) that touched on insomnia. One of the things that happens when you sleep is cerebro-spinal fluid cleanses your brain of toxic proteins. The less sleep you get the more these proteins build up, the more these proteins build up, the less sleep you get. You likely have a HUGE buildup of these proteins, beta-ameloid plaque.

http://www.sciencefriday.com/segment/06/05/2015/what-is-sleep-a-superpower-a-power-cleanse.html

Oh, this also effects your retention of memories.

damnit! I never used to be ill! and now... is ther eany bit of me that works as ... advertised?

I refuse to guess at that one

nah.... trust me.... there isn't a part of me not affeted in some way by the chemo... even 'there' hmm.... nope... really can't think of a bit of me that isn't broken now, by the chemo drugs - they're very sneaky when you sign consent; no way do they reveal the full extent of what side affects one gets, including failing to mention some major perminantly potentially, side affects, that, actually, would have rahter seriously made me think about not signing consent. - quite cross about that. actually.

Some scientist (whose name escapes me at the moment and apparently Google won't help) spend a lot of time (like several months) under ground (in some mine shaft or cave as it were). Turns out his daily routine changed quite remarkably. If memory serves he stayed awake for a lot of hours - like 50 or so - and then only slept for a few (less than 10, but again I can't find anything via Google right now)

That would be Michel Siffre.

sounds like me, the last few months - I do attempt to keep some kind of connect with the real world, and not get too out of kileter; or it gets difficult making appointmtents etc, during the day; so I'm useually up by 9 whatever, just seems to work tha tway.... just that sometimes I've got into bed at 3 or 4, and was still awake at 5 before then waking at 9

ouch. eyes gone hurty again... - trying to think the pain away; haven't got time for it, have to wait in for bed to arrive tomorrow, then assemble base, sort it out, etc... - will be at hospital Wednesday anyhow for clinic, so if needed, guess I can try crash eye clinic whilst there.... - may even try for bed soon... suddenly feeling so tired...