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

And, that is 'epic' in a kind of

'Oh, my holy moustach of hasslte hoff, a big dollop of BoB, and a side-helping of holy crap'.

That. wasn't nice. but. I'm goign to do it two more times. gosh.

Wasn't made any easier by the disorganisation of the day.

arrived early. bloods done, so nicely and easily, by just after 9 (nurse for once got line into me port, sweiftly, first time, and correctly).

clinick done by 11. but, for some reason no consultant. so didn't get to sort out a load of stuff I need to sort out

then. went for lunch.

then. waited. and waited. and waited.

Finally got into chemo day room, at like 6. then discovered Dr hadn't cleared my lungs as healthy for tghe bleo, so had to wait for a dr to appear and test my lungs.

lungs fine, chemo coudl go ahead.

got home at 9.

so little food during afternoon, had to take an extra dose of hydrocortisone during/just at end of chemo as I was heading into addisonian crisis, I think.

then... still wobbly.... due to lack of food, so had to get a sandwich from the supermarekt in bottom of hospital, so we could risk getting a cab home.

got home.
so late.

cuddled W for an hour or so in bed.

all kinds of epic cell death is occuring. Trust me. I know all about it. but, that's gotta be good? right? and....... pah. its only pain.

Drugs tryign their hardest, to make me nauseious....... I'm haivng none of it. (so far).

bleo keeps making me sweat buckets

trying to force hydrate myself; each.... well, pee..... feels like a whole lot of toxin vacating the building

I'm so tired. didn't sleep more than an hour and a half last night. haven't slept more than 2 hours now, for at least a fortnight. I'm so tired.

threw away the sleeping tabelts. was still getting mind halucinations, paranoia, and anxiety from having foolisly taken a couple, err, what like two nights ago? : I so don't need that.

- feeling like I've been beaten up..... but not beaten... yet.... not by a long way. Two more ribbons, and two more chemos to go. - have the new orange ribbon in my hair, from todayys chemo

yep.l....... I think today is suitable to be classified as being really quite epic.

another cuppa tea, then gona try sleep. I think. I hope.

Cool Old Guy still reading
"Good to see you managed "

Cool Old Guy on his broken keyboard
" a good sleep, sounds appealing "

I keep ...... setting my .... 'aimgs for myself' way too high; basically I'm sort of unsatisfied 'i'm handling it', if I'm anything less than 100% my useual abnormal self.

and.... well. even I'm starting to think that might be setting the 'bar' a wee bit high and unrealistic.

I'm a long way from just* managing, or coping. I'm still...... eating it up. even.... if it sometimes feels a wee bit... bleh.
and I so should ha have probably like been in bed ages ago; but I'd not have slept... so.... kinda whats teh point?

after this cuppa tea I'll try though. the sweating caused by the bleo seems to have subsided. the dacabazine is having antoher attempt to make me feel sick. but....... nah. its not really* tryign that hard. hmm.... just more like ordinary hurty cell dieing feeling, and taht's just s o not a problem. so fafr.......

Some quite epic bits of cell death in my poor poor weak bone marrow. but that's just pain which is OK. and then just the useual all-over body aching stuff, which.... is barely recordable over the more.... immediate sharp pain bits, and stuff.
only gotta concentrate for a few seconds.

turn it all into waves of colours, from pain. and then I can't feel it. - just hope I can muster that, for long enough to maybe lower my 'guard' and let myself try somehow to sleep. sleep .... lack of is, probably screwing me more than any of the chemo, stuff, directly, in some ways.

hoping I can muster the energy in teh morning, to make it outside, and do at least part of teh shopping in town, with W, before he has to go home, in the afternoon; just benig out always makes me feel better, in the long-run, even if, its soemtimes a litle ... bit of an effort to force myself to go out.

Its all fun and games, until somone gets hurt; then is really* fun and games begin
right. tea must be brewed now. then bed.

I went to bed. After drinking my final cuppa tea.

rearrnaged teddys, cushions etc, and actually got into bed

and.

I slept.

OK. I was being optamistic, I really think that's the first sleep I've done, to any level of feeling like I've slept, for over a month.

wow.

was just about 'coming too', more aware than I am whilst asleep of movement in the house; could hear lodger's breathing, then heard W getting up, moving on the landing. hearing traffic etc, and footfall outside

and.

<bruised< utterly (I think, for once) non-chemo related; cramp!!!!!! most epic cramp in my calf.


Turns out. if I leap out of bed quick enough, I avoid all the abdominanal and other leg and muscle and stuff pains and..... for some reason didn't get the useual almost falling over/passing out blood pressure drop thinggy well. it got me out of bed, and I was quick enough to grab the offending muscle on my leg, to stop the cramp in its tracks.

Don't let anyone ever convince you otherwise; if you've never had the 'fortune' to have cramp; it is the most painful thing in the world. More painful tan any of the cancer/chemo balls I've had so far; and, my Dad, who's also prone to cramp; confirms this theory, as he finds it way more painful than his heart attack he had....

coffee.

2 rounds wholemeal/multigrain toast, butter, and an hard boiled egg, for breakfast.

Bleo still bashing my lungs and making me come out in sweats (assume that is what it is, anyhow).
Dacarbazine still trying to fiddle with my receptors in my tummy and make me feel vomity.

nah. they're so not trying.

and I'm so gona kick the out of the 90 year old who's stolen my normal muscles and joints..... I want my old ones back.... the ones that work and don't creak and hurt and.... try to fail

went out in town walked into the center. did some grocery shopping, picked up some cosmeticy stuff; bog rolls, coconut body wash, more chey butter soap didn't need to visit Lush today; so didn't need the bank

Went to Boots, and saw pharmacist.

I'm ment to be the one with chemo brain.

I'm starting to lose faith in the human race. they are, in general, just so ing stupid.

I've not got a talking thermometer, to monitor my temperature.

Told nurses, and the not-quite-consultant I saw yesterday (so they don't think I'm worth having a proper consultatation now, at hospital?), this yesterday. They said they've no solution; as to how I can then do this. ; They told me to just monitor how well I'm feeling. I explained to them. I'm not feeling well, feeling more unwell is not something I can pick up on; flu-like symptoms constantly anyhow, so, they know this, so ... I'd like it if they were more logical; I can't understand their ability to understand this stuff, then, within a few words, demonstrate their entire inability to understand what they are, themselves saying. - and, as well they know, my symptoms from chemo, which match the symptoms from me running a temp/having an infection, vary, each infusion, and over time, in the period between infusions anyhow.

anyhow.

spoke to dispensing/in charge pharmacist. at least she spoke English this time.

this didn't help.

figured are only option to figure it out ourselves, so we wanted a thermometer, W can use on me, as we don't seem to have anothe roption, not ideal, as he's not here all the time... but it'll have to do.

asked her advice, as one, as a patient, is advised to do.

digital thermometer, for taking temp by ear.

she sold us one that can't be used on one's ear, only anally or in the armpit, both of which I've already been told by hospital, wo't give the level of accuracy I need.

hurrah. My head hurts. I'm surrounded by ing idiots.

Came home by cafe, and a pain o chocalatt cake thing and decent double expresso coffee.


was making a bite of mid-morning eatingness (I'm trying to aim for five or six meals a day now, to balance out my endochrinology as best I can whilst the endchrinologists at the hospital refuse to do anything).

par-way through slicing some pain au levain (and laughing hysterically at how out of breath and tired it was making me feel) when doorbell went

I ran downstairs.

realising about half way, how not a good idea that is......

oo. another package from Scandanavia Hmmm. that's so against trade law, and... stuff... but it made it through once more

I'm so good at being bad. even.... with other factors at the moment, so It seems


Oo.

forgot to mention.


Despite all the awefulness at hospital yesterday, of waiting for hours and hours and hours and hours.

once the chemo actually got going, I felt so much better... just knowing it was underway; and we spent most of the time, for a change, talking to the couple next to us; husband and whife (whife having the chemo), which was really nice for a change; often people in the chemo day room, seem.... well, like one doesn't relaly wanna disturb whatever internal thoughts and suchlike they're quietly going through, whilst enduring....

they were .... very curious about my ribbons, and about William and I.... so, given the rest of the room is quite quiet, asides nurses quietly checking through drugs, and checking them off for each patient, most of the room I guess, got W and I's plotted... history (censored, safe for public re-telling version anyhow)

and were talkign about the ribbons.... and how I'm putting one in for each infusion (I was tieing in the sixth as we were talking),

I mentioned the problem, if I lose much more hair, of how I'm going to be attach them to my head.....

a voice from over the room, a couple chairs down (male) suggested seletap...

and which point, i said, 'seletape? nah, I was thinking superglue might work best'


yep. room in hysterical laughter. again. and then a nurse suggesting that might not be such a good idea, as removal might be problem; so I happened to mention cutting off superglue from skin is something I'm used to doing on my fingers anyhow.... - given I'd already mentioned my ingrowing toenail self-extraction, no anasetic, to the couple next to us, earlier.... this got another successful complete room of hysterical.... or slightly worried laughter

Ive so not lost my touch.

there is a strange product for gluing bows to the heads of babies... I'm not sure why...
so its not that strange a suggestion

OMG! seriously? now. people think I'm odd.... so what the heck does that make such a product actually existing!??!



canny decide what to do now..... could have a quick doze/nap..... think about an early 'dinner', before second dinner/supper later (balancing out calory/carbs, to help balance my sugars in bloods, as to combat not recieving any real treatments yet, for my endochrine weirdnesses, and also to helpe balance out the hydrocortisone I'm taking etc)

thinking about self scripting the random pack of antibiotics still.... might help avoid infection perhaps.... I know.... bad... bad... boy... trust me.... I'm so nearly not quite a dr myself <evilgrin, or... I could... dunno.... do something else.... drink another 42 cups of tea perhaps...; trying to do some major hydration today.... help get the worse of the initial bash at my system flushed out as quick as possible.... judging what I can feel happening.... in my joints and bones.... I'm getting the idea there is a bit of dead cell matterial that might feel better were it not languishing about for too long

Cool Old Guy slowly rotating
"Good you, got and get enough water and rest "

"there is a strange product for gluing bows to the heads of babies"

There are lots of substances that do that...most just don't target it as their primary market!

Cool Old Guy not bothered to search
"There are two youngsters upstairs here, one just dropped an ice cream on the other his head

Already reminded me of the ice cream with a boneshaped stick < A13398979 > on the forum below it."

Oh yus!

I stil say my first suggestion; superglue will work fine. what could possibly go wrong

actually.

just. because.... it'd look so even more rediculus, than I do already ; an alice band oughta do the job, if I relaly do eventually end up with no hair; or atleast not enough hair.... or, at least not enough hair to make a pony tail to warrent putting the hair band, to which i've attached the ribbons too, on

its getting so heavy now!; the ribbons on it!; err.... 6 X 3 ft now..... so.... err.... (chemo-brain) err... thats 18 foot right,? of 1 inch wide ribbon.

another two 3 ft ribbons to go on, one for each infusion... so another 6 ft of ribbon... so... err... that's like.... err.... (chemo-brain) err... 18 plus 6.... 22 foot? err... no. hang on.... 23 foot? err.

hang on need my fingers a moment.

24 foot? oh... I was never good at maths to start with... but..... this damn chemo brain.

as i explained ito the nurse yesterday, when she was asking (I think just genuinly interested);

I've a 1st class BSc, and a masters degree; some bits of thinking, seem to work; often baffling so; I quickly recanted some immunology, vaguely related to oncology, and certainly my hodgkin's/blood haemo related immune system affecting stuff; she got all the immunology basic stuff; they know that afterall; I then told her the genetics; including chromosomal locations; after telling her it was* about to be true, but probably stuff way behond anything she might want/be expected to know, clinically; then, explained;

I can do that. recall that from 2001 - 2002, when I did my masters;

yet, right now, in the middle of chemo;

I can stand at my kitchen workotop; having sliced bread;

lay the bread out on the plate; get out some cheese, and butter; and literally not have the faintest clue how I make it into a sandwich. seriously.

hence.

when I say tonight, I'm going to attempt to make a white sauce, then add cheese to make it a cheese sauce, pour over pasta, etc, to make a simple easy diner. it really is an epic struggle, mentally, to plan that out, and do it, even though... I mean. bluddy cheese sauce! I can make that in my sleep! nothing easier/simpler..... but.... err.....

Ok.... from memory.....

2 oz butter, 2 oz flour, and bout half a pint milk.... I think* ...

OMG! I can't believe I might actually have to look up the damn recipie for cheese sauce this bluddy chemo-brain....

maybe I should just have some salad and cooked meat with cheese instead.... it might be safer damnit. damnit damnit. hmm...... salad might actually be a less demanding meal on my tummy.....

damnit.

I don't want too... but... I might have to give in and take an anti-nausea tablet tonight, before I eat.... just....... precautionary.... mind.... ... hmmm... unless.... Guinness can be quite tummy settling.... hmmm.


I'm having unclever ideas again. bad ideas. not-sensible ideas... I think... damnit... I'm so crap left to my own devices sometimes

pah. you only die 42 times. and I've only died about three times so far..... life...... without risk... and sillyness... is boring. I'm trying to be good, though.... really I am... it.... just doesn't show very often

Only two more infusions to go. I'll be damned if I'm going to start behaving sane before the end.... its just so entirely unnecessary.


did I mention one of the nurses was really 'up' for my idea, of me turnign up for my last chemo session fully cross dressed.... in a dress... and my new teddy.... - ooo.... might have to get a new dress... I've put a bit of weight on thanks the damn steroids

Oh. and. I've just discovered, the LGBT group on the Macmillan's cancer forums.... where I've already.... generated a certain degree.... of insanity the Hodgkin's group was sorely calling out for I'm not even sure the LGBT group is prepared for me..... there seem to be some lesbiens, and homosexuals/gays/queers and bisexuals floating about.... not noticed any cross-dressors yet, and not a single collared submissive, amongst them.... and not one who's also happens to be blind, and as insane as an anchovy in a supernova

i wonder what's it is actually like, sometimes, to be 'normal'. then........ then.... i remember I've seen normality a few times... and.... didn't like what i saw

right.

dinner. .... err... we decided on salad in cheese sauce didn't we? (OK; don't worry; not quite that insane, I promise!)

OK, a disclaimer--this is an idea that came to me while half awake in the shower.

Should fit right into a 2legs journal, then

Anyway, instead of getting a normal thermometer/trying to find a talking one that works, look for a temperature gun! I actually don't know much about them, including whether they come in a talking version, but, being a DIY item, they might... I do know, however, that there are people who are *really* into incubating eggs that use temp guns to check egg temperature, because they can't get/haven't found an accurate thermometer. So, I was thinking, if you can measure the interior temperature of an egg with one, why not the interior temperature of a 2legs? And could be something else to entertain the chemo suite with

never heard of such a thing! - we picked up an ordinary thermometer, I.E., not talking, in town today, after getting the money back on teh useless first one we bought (which didn't measure ear temp) we got the new one working it seems true, I'm ment to monitor my temp really often, etc., but this is as good a plan as we can come up with, and the hospital.... don't seem to have any ideas or solutions so.... I think we can muddle through the next.... dunno... less than a month actually of chemo, and then I guess I'll still be neutropenic and prone to infections for a few weeks after the final session, as my neuts and other cells gradually try to work back up to soemthing resembling normal by any .... useual patturn of classificaiton

In your Masters', did you not take just use yourself as your dissertation topic? Seems a completely new field of expertise to specialise in

I've enough science in my body ATM to do a Phd on my pathologies I reckon! - actually, been eyeing up some potential PhD topics, whilst doing all my background, and side-ways reading round my current pathologies, and talking to the consultants etc., in oncology! I was so nasty to W earlier no my fault... its the drugs man!