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

don't panic.



Not *THAT* kinda thrill


-- Seems little, if anything, and certainly not chemo can ... reduce, deminish or alter *THAT* kinda... thrill




I speak of the thrill, excitement, and possible jollys, that the two new messages on voicemail, (left

Thursday I think? can't quite recall now... or maybe Friday... damn chemo brain), from the hospital, briefly

left



turns out, afterall, that neither marked a thrilling new and exciting disease/condition.

yet!



rather, both pertain to the Addisons disease, and the finally* achieved appointment for endochronology,

to test my, (and my consultant oncologists) theory, that it ain't really* addisons disease.----

I believe the endochrine abnormalities;

Adrenal glands not secreting cortisol and suchlike I think it is (sorry, chemo brain),

is, actually; related to my head injury, when I lost my eyesight, back in December 1993 (actual accident,

head trauma); and 1994 (brain hemorridge amongst other fun ways to pass time), and the Pituitary gland

may have been damaged (particularly by origional lorry-caused physical head trauma);

so, basically I've sat with this disease since then; but clearly;

because I am the most laid back, hippest and coolist character alive, ever; I've yet, despite my BSC and

MSc, despite all the various, varied, and dangerous situations I've placed myself in, over this period;

despite the two times I've been in road traffic accidents (never went to medical treatment for either), over

the past.... however many years; I've never, stressed out sufficiently for the endochrine problems to be

noticed; until the worry? - night before appointment for what would* have been the origional Pet scan, for

staging the hodgkins lymphoma.

I'm that damn cool. I reckon.

so. theory goes; it ain't addisons (autoimmune endochrine disease), its Pituitry dammage (physical;

caused by articulated lorry wing mirror (OK maybe by the first Brain Hemoridge is a possibillity))-

meaning, the pituitory isn't secreting enough/any; ACTH; (adreno corticotrophic hormone)so adrenals

ain't being told to secrete the hormones that I'm missing; Hormones, which, just happen to be the same

ones, basically, one is missing if you do* have Addisons disease.

Of course, my background is* biomed, but not clinical... - I've little idea what differnce this makes; they

may only be able to medicate with the hydrocortisone steroids, (for addisons), and, replacement 'ACTH' or

some such treatment, (to treat Pituitry abnormality), just may not exist. I dunno... can't really get my chemo

brain round in-depth research myself, ATM...


I've just been, I'd like to point out; sitting here; typing thhis, thinking. processing data. recalling my BSc

97-00, , and MSc 00-01) and 2001 onwards), - and... brain is fadingfast on process/writing this... ; had to sit

with this on PC for a while... before I had strength to finish it (OK, I'd also forgotten I'd started writing it...

)

appoinment for a week today; (err, OK, a week Friday (yesterday? ) I had to leave this document, and just

noticed it here, this (Saturday morning), they wanted to move the timing slight; back to 8.30 AM, which

actually sutis us better anyhow; may be able to get there before* the worse of the rush hour.... maybe...

(though if its a nice day, and the sun is starting to emerge.... both Sir, err, William and I would certainly

just go for the walking there option rahter than getting a cab- if my legs and body is up to it... and my

brain...).

Urgh.

sleep is the worse thign right now. last night... maybe 4 hours... ; brain suddenly turned on to function

circa 1 or 2 AM, especially (just when I wanted to crawl into bed!), so I sat up, until about 4.30 reading

some peer-reviewed scienticif journal articles, about all kinds of things; not just addisons, or cancer, or Mr

Hodgkins.... - found some fabulus ancient journal articles, late 1800s, about haematology!! -

yet; I'm sitting... OK; laying there on my bed, reading this stuff on the laptop; like 3 -4 AM, and bang,

suddenly brain's in gear; and I'm able to read it, just as (well close to), as if I was back in my accademic

study/student days... ; have to say I can't exactly recall a lot of what I read, though, this morning! - did

some reading on adrenal gland basic anatomy/physiology, that I'd forgotten; and same for basic Pituitory

stuff... - hmm... wonder if the pituitory damage also may have lead to my having higher than normal

oxitocin levels as a daily thing... would explain... a bit... about ... some aspects of my 'normal' (used in its

braodest sense) physiology and physiological reactions.... to ... certain things

anyhow... like, being tired like that, last night, is so horrible; so fatigued, worn out, knackered,

brain-fogged, from drugs, etc, yet, kinda awake, alert at same time (steroids maybe even?) ...

and.
viscious circles; so over-compensating this rmoning by level of caffine intake!; must get some jassmine

teabags today; to try switch; from cafinated to un-cafinated hot beverage, so I can downgrade my caffine

levels, as the day moves into late afternoon...; I am* trying to stop the cafinated tea, circa 7 PM... but...

that is probably itself a bit late... TBH...


William over today, for weekend I think. so looking forward to a and hopefully* a n afternoon

nap later... ; as nice as cuddling my teddys was all night last night (well for the few

hours I was kinda trying to sleep), its... somewhat nicer when its a person I'm cuddling.... especially when

its a person I'm ... so utterly in love with and... really very dependant on, ATM, emotionally,

asides anything else...

Still feels "so wrong", feeling so kinda sort of ill, at moments, or, like Thursday; being hooked up

to IV chemo drugs, in the hospital... laying in bed... and W/Sir, just touched my arm... caressed it, wahilst I

was blasting my brain with headphones and heavy metal... and... just feeling his touch I kinda... well...

- I'm sure there arn't many patients in chemo who can lay there having tiny..... O's whilst

recieving their chemo
I'm hopeless at 'being ill'... and I'm such an impatient ... patient If I'm not well soon... I'm

gona have to have a serious talk to the universe, about its priorities.... - I may have to threaten the

universe...

Oh. and... yesterday... was ... looking at... matching chainmail.... ankletts... - as if I

didn't clank enough already now, walking round teh house : I used to be so quiet and stealthy,

able to sneak up on people... not anymore... 24/7 basically in chainmail bracelets, and of course the purple

leather day-collar, with its O-ring,a t the front... which tends to 'clank a bit as I walk.... even without the ...

chain attached

I really can't recall if I had the chain on too... when I was seeing my consultant Thursday.... I'd love to

know what he 'makes of me' as it were.... William/Sir and I... must... be a slightly odd pair to be sitting in his

consultant room I think I'm kidna going a bit steampunk with the ... chains... and metal

stuff... - we certainly get lots of comments wondering about the hospital, on our hats; which

people seem to approve of! ; mine, is, still, I might add, covering up my hair!; there is... still hair... not as

much I fear, looking at the bedroom floor covering right now but still some there...Right. I need

more caffine, then must try shower... dont' really feel steady enough to shower yet... ; maybe some food

first... not had any breakfast yet...


I should warn... (anyone still paying attention!); I've another half written journal entry... thing... on my laptop... which I've been meaning to post too... can't even recall what that was about... I think it might be more amusing...! feel free to ignore my brain-fog, sleep-deprived, chemo-brain ramblings... I think there is some sense in them... but, given ... various things at the moment... I camt be entirely sure, how coherient they are... - of course... feel equally free to ramble nonsense to me... and especially take teh P... that's always good to.... keep my brain ticking over

must get more caffine, try shower...

This is quite a lot to take in - I too need now

the sciency bits, or the ... arndom otter stuff? I do kinda forget soemthimes.... when brain is working, OK, the sciency medical stuff, I've something of an advantage with, given my s studies

yet a -bluddy gain ;; nausea I felt this mroning; nope. that isn't* nausea : I'm just so damn hungry!; judging by way it passed on finlaly getting round to eating something..... ; brie, very ripe, butter.... lots, and toast...
Mind. not entirely sure what those waves of pain, throughout my body were... I can have a couple good guesses

Luckily. concentration. mindfullness. and.... I guess kinda medication type concentration thinggy I can do... and converting pain to colours/heat... no pain. - plenty of tea though; I t still say, is the most powerful medication known to mankind I've become suich a total tea addict last couple weeks

They say you can hardly overuse tea but I heard about at least one person getting problems from gallons of green tea. Was it the kidneys or the liver protesting? I can't remember.

You studied biomed? My daughter is a bachelor in molecular bio medicine. At the moment she feeds cookies made of crickets to children in Kenya to see how nutritional they are

the cricket cookies - not the children

Children are over-rated, nutritionally.... - far better toeat an adult IMO!!!!

Green tea?! ; Kidneys I have thought; I don't think green tea, or ordinary black cafinated tea, really has enough, chemically to do any liver damage; unless its like really contaminated with some obvious source... like a batch from a really dodgy field/growning area! - I might be wrong...--
I did, for my BSc, full title; cell and molecular biology, biomedical science and biological science (1:1), then Immunology and Immunogenetics for the MSC I went on to do afterwards....
Specialised for no particula reason, fairly early on, in autoimmunity; just soemthing I got interested in; particularly in systemic lupus erythematosus; then got into the genetics of it, looking at Stuff to do with its genetics, in my Masters research - most of which I've long long ago totally forgotten; and that which I've not... I'm so* far out of date

Just had a loverly nap/lay down/rest with Sir/Wjilliam..... I got all fidgity... and wasn't sure if I was coming into some nausea... so I got up, and let W sleep/nap longer; damnit!- I so whish I knew how he can nap/sleep like that!-0=- to a lifelong rubbish sleeper, and more recently basically total insomniac its... kinda almost annoying if I wasn't just so in awe of his ability to be asleep within minutes of getting into bed... - I have to move quick..... if I want some ... distraction from the initial period of getting into bed, and heading straight to sleeping thing

and... of course... now I'm up... I so wish I was just laying there.... feeling his warmth one side... and the masses of teddys/dolls/softplushtoys the other side of the bed by the wall q

There is an art, or rather, a knack to sleeping.
It's much like flying.
The knack lies in learning how to throw yourself at the ground and miss.

sadly... a skill I never leartn.....a nd rite now... would be so useful.

OK; tice origional doze of sleeping tablets... - I got ... oo, maybe four hours... in one straight sleep... and maybe an hour, later, after that... more dozing than sleeping; dosn't help; even wehn asleep I'm totally aware of my surroundings... ; I'll clock, in my brain, consciously, the 'oh, its the milkman outside', or 'oh, that's my lodger pouring a whisky downstairs'... etc.... even when I'm sound asleep... well, what passes for 'sound asleep' with me anyhow.
feel like bed again already... - I'd not sleep though, so tahere doesn't seem any point even trying.

sort of breakfast, scrambled duck egg, eaten. kitchen cleaned, twice, towel laundry, hot wash, into wash. and tea drunk, and coffee drunk... and so hungry... but no idea what to eat, or if I've energy to stand up in kitchen and make anything...

If it's been lurking since 1993/4, you've borne it well!

TRiG.

Exactly! - so why won't anyone.... like my consulstant.... take me seriously... as I shimmy in, all clinky and clanky in my chainmail... and annouce my indistructability\/?! or... something simular to that anyhow

feeling something less than indistructible today... Oh, physically... no actual naucea... no more pain ... as in, only total all over body pain; that I can't handle, and whipe out entirely with a few twists and turns of the nature of space time around my person, using nothing more than my brian and some brie

stuffed with food... I'm gona get so* fat ,wah> ate a whole loaf of pain o levain today... just snort of snacking on it... and with half a pack of butter to moisten it... and brie... and cheddar... and that was without what atual food was... like the pizza, salad and chips for dinner

I even ate crem eggs more duck eggs... regular toast/bread too of course..... and... just so much! - I almost feel nauseus, thinking of just how much stuff I've stuffed my face with today...

but... then being such a snappy... abnoxious and ... really not me... to Sir... and he keeps saying its alright... but... its ing not... I should't be behaving like that... grr> grr>

I fixe the truble ryer though... by headbutting it... by accident

now. its bedtime. Sir already in bed... and I can't even contemplate being tired enough to try... after not a brillient sleep last night; despite taking sleeping tablets... but... another 50 hours, plus non sleeping is so not good for me... or anyone round, me right now

Hi, 2Legs.

I'm getting very confused by the references to Addison's Disease and chemotherapy. Why would Addison's require chemotherapy? If anything, chemotherapy could be a *cause* of Addison's. Hodgkin's would be a worry if it was confirmed, but catching it early makes a full recovery more likely.

So, good luck to you. Addison's would likely account for your weight loss. Or not. Who knows? The human body is a mysterious zone.

But be careful with the chemo.

I have a good friend who got chemotherapy for throat cancer. The throat cancer went away, but the chemo pushed the cancer into his liver instead.

Cancer's a stealthy beast . Don't let it in if at all possible.

ahh; it got complicated!--


found lump under my armpit; William made me go to GP;

hopital appointments followed; biopsy identified it as Hodgkins lymphoma;

next step was to have PET scan; to 'stage the lymphoma'.

night before PET scan; I had a fit/seisure;

the fit/whtever took out my memory back to at least september last year; and put me in hospital, where they did loads of checks; one theory was that it was due to low sodium; I may* have had a stroke/hamorridge as par tof the fit.

bloods then identified my adrenal glands arn't working;
fnially got to see endocrinology Friday just gone; did more tests; still possibly thinking it may be addisons disease; or a more upstream reaosn for my adrenals not working; I'm on Hydrocortisone, to replace the missing cortisol from my adrenals;

bloods for endocrinology also revealed a low B12; this may be a symptom of penetious anemia; which is related to Addisons in many peoplle;

the addisons; and enemia; are, they think ; just findings that have been made, because I'm in contact with hospital and ill for first time in two decades; side-findings if you like;

the PET scan for the lymphoma did eventually occur; stage 2 B I think it is; restricted above my diaphgram; all on one side; early stage, not spreading.

I'm now well into the chemo; finish cycle 2 of 6, this Thursday; waiting for resutls from endochrinology as goes the other stuff;

I'm a bit worreid they might be missing some kind of focnnection; have misdiagnosed something....; E.G., penetious anemia, could be related to chronic gastritus which can soemtiems be assocaited with stomach etc cancers; or disease of the heart.- its all medical fun and games once more with my pathology!

worse thing is still my brain not working well; and neurology have kinda just given up on me; I must try make some kinda follow-up happen; I'm not even sure if I had a stroke, a harmorridge or ... noen of the above (I had a haemoridge back in 1994, after my road accident late 93; both of them combined, back then, left me blind); but, since then, I've basically never been ill - making up for it, now it seems, in one big complicated mess of pathologies
-- the adrenal problem may, in fact, date back to 93/94; endochrinologist eagrees; and we're also checking my ACTH and hypothalamic things; as they can be 'upstream' things htat can cause adrenal insufficienciey - err... something like that anyhow; its damn com/icated; and not helped, by the fact I can't even reember being diagnosed with lymphoma.... I vaguelyl vaguely recall going to GP to have the 'lump under my armpit looked at', but... asdies taht.... I don't recall having the biopsy, fit, pet scan, only very vaguely awere of bein hin hospital etc... memory loss is the wrose thing... its set me really off kilter

- but. It'll all be OK.... it just... gona take a wee bit of time to reach the Ok thing at the end and... basically... I sort of feel fine, pretty much all the time... at the moment; which makes it all the more surreal... I'm ment to be ill; but... I basically... sort of feel OK well, some steroid and chemo side-affects, but nothign I can't handle

probably doens't help; with clarity, the way... I'm..... somehwat ... over-silly-fying my journals, (coping mechanism I think); rather than just giving X Y Z, etc details; of course, this is also partially because my thinking really ain't quite 100/% in some ways... though its improving all the time; concentration, memory etc, gradually improving

next chemo thursday 1/3 way though already! - whatever it is, with me wrong in total... the cancer... the rest o it; I'm stronger than all of it... physically if not emotionally... and emotionally... I've got such good support that side is covered too... at least until its all over... when... just perhaps.... I might have to have a mental collapse... - haven't qutie decided yet if I shoudl or not though (sorry.... too much seriousness.... nah... ain't me!) - doing cancer, the 2legs way!

"I might have to have a mental collapse... - haven't qutie decided yet if I shoudl or not though"

I'm almost certain that such things are all but impossible to plan, so save your energy. Besides, what's normal for your mind is not necessarily what's normal for anyone else.

But on the plus side 2legs, you don't have an itchy back. An itchy back is a bastard.




()

exactly! and....----

Oh... some serious positives, from cancer so far... are... quite ; a lot I think are probably, more acurately, the side affects of having quit smoking, which, is of course as a rsult of the oncology consultant, telling me to quit. so... directly in reality as rsult of the lymphoma

smell. taste synesthesia my skin! my nails My cuticles!

but. then there is the way. Sir.. William and I... are, even... more than we wer e before and... and and... and..... for once, I abstain, from putting something here.... because... I'm not sure I can... wihtout.... overstepping .... even mor ethan useual... th e.... err... stuff innit

and. true enough. ; there really is something to be said for new experiences.

Its truely quite something to feel massive cell death inside your own body. in your lungs. in your stomach and digestive tract. feel your kidneys, and liver, trying to produce new cells, and then having them nucked by the chemo drugs. feeling waves of cell death move across my scalp, in my brain and hair folicles. feeling muscles under go apoptosis... dunno... guess its painful... but.. I'd not necessarily discribe as so... well. yeh, kind apainful. but. an experience none the less.

Not entirely sure the 'knowing what it might feel like to be a corpse' bit, is reccomended very highly, on the list of top 1000 or even 10000 list, of 'things to do before you die', but... its certainly a feeling worth I think, remembering; kinda puts other things a little bit in perspective

and. of course... my rediscovery of teddy's... a definate plus... even if it is getting a real struggle fighting for space in bed, when I wanna sleep now well, when I wanna try* sleep

running on about 21 to 22 hours day length, now, it seems... but, last few days at least, felt quite good. awake, more alert, better concentration, less massive drops in energy; better stiminer, like when I'm out; haven't got to stage of feeling like I'm passing out when outside, for a while

just.... so wish... either I was a little stronger.... or could convince Sir, I was, so, and that I wasn't as breakable as he thinks I might be... as... it curtails.... certain things ; having said which; I'm being ultra ultra careful, right now; as I near next chemo Thursday; ensuring I don't break nothing significent, or get an infection, that might prevent chemo happenig; some serious amoutn of disinfecting and steralising, going on and buckets of hand soap, bleach, disinfectant spray, soap, alcohol hand gel, etc, being used, and disposbiel cleaning cloths, surgical gloves, and going through the towels/flannels etc, at double even since starting chemo rate... ; reminds me, I think I'm due getting some laundry done, agian tomorrow; clothes, so I've capacity for th enext hot hot load of towel laundry

gona bath bomb agian tomorrow night, and with the bath melt too partially... so I'm all.... nice n soft, for Wednesday... as Wiliam's staying over wed night, so we can head off easier to hospital for chemo thurs morning...

MMMMMM... Thursday... Hope they've still got the new season's saline, its just got that little extra-something now, ; fresher.... I keep telling the nurses to put more gin with it though... and my loverly loverly ABVD including the fabulus red goo into my portacath straight into my vena cava... in my chest oo... must sort out the tunes for my Mp3 player, tomorrow <zen< and charge it up ready

I would be more than content to not experience chemotherapy before I die .

Living out my last days in a hospice would also not be on my bucket list. I've consoled friends who *were* in a hospice, though, and I think the care in the one I visited was superb. Going out while doing what I love best would be my preference.

I've had a very easy ride of chemotherapy.... I can tell... from other's round me, in the dayclinic, I attend at the hospital, for my chemo, and from talking to others, online, in same chemo treatment as me, (let alone those having more hardcore chemo), that I've been lucky... others, obviously less so...

I mainly spend my time, during chemo, listening to music, meditating, and chatting up/making the nurses laugh; and just makeing them smile, to help brighten their day... the main bit, with it... is just the tedium, of sitting there, for hours... - and then standing, afterwards, cramp! <laugh and .... useually swollen feet, from the vast amount of fluids, pumped straight into circulation a small price to pay, for removing the intruder, from my body, in the grand scheme of things... - and in some respects, feeling so lucky, having escaped what mayh have been, in terms of side affects, from my own treatment, or, indeed, having something way more worse, to be treated for, being in a less fit, healthy state to start with, etc.
and. oddly. grateful. Life isn't going to be the same after this. hard to discribe. but... it kind of puts things in perspective. Perhaps moreso than when I went blind, following the road traffic accident when I was 17... and being in a coma back then and stuff... - life's good... perhaps to be moreso... now... having for the second time, come close to not having one... well, second, third, or forth time close... depending on which 'events' I count!; its all getting a bit.... relative... levels of illness, over the decades yet I... remain healthy, as far as I'm concerned... and in general.... my body just does what I damn well tell it... or ... else

I'm glad you have so much to be happy about.

lots more happy than sad... lots more positive than negative... I don't really do negative, or sad... though, I think the past few months saw me edging in those more negative unhappy direcitons at times.

but. positively. I think; sometimes its good to see the edge of the abis,- to find, or at least, see the deptss of it, and its implications, to realise the positive, of the good, and the happy, and the positive things in our lives. perspectives may change a bit... but, some things remain constant, I think... just they vary... in subtle ways...I've some dark, very dark places in my mind; most I don't think i realised were there.... but, they're few and far between, in reality, compaired to better places, and things, therein... even, if, perhaps, to many people, often some of my positive, happy, good places, things, might seem... a little less than mainstream, or 'normal'... they are really all variations on normal... and suchlike... just perhaps alternative ways of getting there, or doing so... Its going to take months... I think, for things to settle properly... to whatever the 'new' me is going to be... but. excitment, new happy, and new.... weird... is most definatly a positive thing, as far as I'm concerned hmmm... if any of that makes any kinda sense... oddly... it basically does to me