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

Started a high temperature. today. earlier. was just writing out shopping list with William, for a few tings to buy in town, and we remembered to check my temperature, with the new thermometer we got a week or so back, to replace the only talking one I could find, and hence the only One I could use myself, which was utterly inaccurate and useless.

phoned haematology and oncology and... they wanted me in.

spent all day in hospital dieing of a blood infections. prodded, poked, stabbed with needles, swabbed, sampled. bleh.


injected antibiotics through my port drank way too much coffee. ate nothing as they don't seem to want you to eat anything if your at hospital anymore, I guess they like it if you faint or go into coma instead.
finally got discharged. so late in the day came home, with more oral antibiotics taht take away my sense of taste and make me feel sick.
Hungry. too late to cook, now, and kitchen's too dirty to cook in.
Spent a few hours in bed with W on getting home. just.

Wish we had better flowers than that.

don't seem to be the right thing, either.

Although I'm sure you felt like, 'Here we go again.'

Get better soon.

oh very much so!; Its all 'getting to me a bit', exactly* because its getting so much of the 'oh no, here we go again'!

-- I've got packing my bag for emergency hospital trips down so quick now! (yes, and I can stuff everythign into my new handbag!)

Despite feeling almost entirely like I was adieing at a few points; I still told some really filthy smutty jokes and remarks to all the nurses

Though I did badly mishudge one err.... 'joke' where I did a rather too realistic impression of a patient having an anaphalatic response to being injected with antibiotics! oops! my bads ! (yeh, and did it to the one nurse with no sense of humour!)

Feeling a little more human again now thankfully.... -0 actually; thinking I may have had that infection 'brewing' for a few days; if* I can sleep just a few hours tonight, feeling I might wake up feeling better than I have done in a few days

Spent like all evening laying across W's lap, just being 'petted' like I'm a child (or, I guess a kittne) heck... I think I was newing likea kitten again and... of course, back into drinking buckets of tea again now; though sadly I won't taste them right for the next five days, due to the oral antibiotic I'm now on

As ever it was thus. -- pain my constant companion and friend or something.... thank BoB I'm a masochist

OK. final cup of tea, brewing. then bed.
Bed. m y own bed. not a hospital bed thankfully. - today could hav ebeen a lot worse! huzzah! and tomorrow, cannot be as crap as today! huzzah! - To insanity anb beyond!

Rest, recover, buddy.

Oh man. (Oh girl? ) You do need a break from all this.
Hope you got some sleep.

I just recently read something about "chemo brain" being a real thing, so at least it's not just you suffering it. I do hope it passes. (loobrush)

Oh

Hope you slept well

Didn't sleep at all. so tired.

now two days since I last slept.

temp hiugh again today. phoned up oncology/haemotology again. luckily they dont' want me in. But not really sure I can answer their diagnostic questions accuratly being so tired. - am I fatigued? yeh, no s***.... - chemo-fatigue, plus tiredness at not sleeping, plus extra fatigue from being on antibiotics and having crap day yesterday in hospital, guess you coudl say I'm tired, and fatigued. - is that a symptom of (the) (an?) infection?: how the am I ment to judge... bodily functions normal yes/no... well. no they're not of course they're ing not, I'm on chemo, it screws everything, so is that an infection symptoms.....? why are doctors asking me these unanswerable stupid questions amd I hot/cold/shivery. well, duh yeh, hot/cold sweats I think thats at least two of the drugs your filling me with cause that... etc., etc., etc., but at least it wasn't the incompetant female doctor who I saw err.... a week ago thurs in clinick... she's dangerous IMO

Too weak to make it out into town, and too tired... W went and got shopping for me so there is some food in at least
had to take extra/early second hydrocortisone today... so may have to extra-dose on that during afternoon plus the useual 1/2 dose early evening/late afternoon depending how things pan out on the addison's front over teh day

already drunk a small oceamn of tea today - I swear I'm about 90% tea right now bought another 80 teabags today, 40 jasmine and 40 green which means. gosh. I'm getting through an aweful lot of tea W gone home, to sort out a few things he needs to do there, back to here, again tomorrow, afternoon.... ; I must* try do laundry tomorrow, so few clothes left... - yeh, this is me?!; not keeping on top of domestic stuff? well, I'm disgusted in myself.... = must get soem cleaning done tomorrow... no wonder i keep getting infections this place is a tip and filthy

Can't see I'm gona be overly productive today though... just so tired.... think I'll try moving more albums onto the IPod, as I've still only got like 540 or so on there, which is a bit poor really... since I've like nearly 400 plus on the PC, and maybe another 400 or so CDs that could be transfered.... doubt I'd fit all that actually... but, well, half of it isn't exactly stuff I listen to anymore... but must finish transfering all the Zappa and beefheart albums... need soemthing sutiably surreal to listen to when I'm laying on a hospital bed being prodded poked and suchlike and of course need all the Ozzy and stuff.... there's something just so perfect about loud rock music for listening too, whilst being pumped full of chemo drugs Oh, and some Kate Bush and Aspaldo Golachovv, of course, for balance, and prince, and if I can find it, the telly tubbies CD single, and the err.... worzils combined harvester cd single. I can't iamgine more inappropiate songs to listen too whilst dieing in hosptial, so they have* to be on there Oh, and the rest of the pink floyd CDs of course; listened to delicate sound of thunder, and some of obscured by clouds yesterday, as well as some of the Prince album (self hamed one, from.... err, wasn't that his first... can't recall)
hm...... probalby oughta transfer all the sabbath CDs over too, really I guess... they might be kinda good for when I'm being infused with the chemo drugs.... - Two more infusions to go. Two more infusions to go. damnit. now its not even a week until the next infusion! Oh... well.... there's always one way to find out just how robust and tough my body still is

bleh. so tired. Think I'll have hardboiled egg and chicken and maybe mayo sarnies for err... mid afternoon middday meal of the day... whatever that equates too at the moment bleh. so tired...

Cool old Guy trying to melt into some Psychic Worriiers ov Gaya
"Try to dive into the music as deep as possible, it tends to give some rest eventually.

imagining a random sequence, then from Zappa into the teletubbies "

Pretty much that odd a mix at times i so totally phased out, yesterday, whilst being poked and stuff.... to Delicate sound of thunder.... Not so sure about the phrase 'lost in the music', just... that but more... - I can kinda do the same thing now, often, even without the music, and entirely .... dislocate my consciousness from my body and the rest of my mind, and from where I am.

its kinda hard to explain, I guess that is part the same way, how I don't feel the giant dagger goign into my chest, when they stab my port to get a line in - I tried explaining this, a few sessions ago to one of the nurse, and apparently she gave me a really odd look - I can feel 'something' 'happening' to my body, to my skin, to teh muscle in my chest, to the area aroudn where the silicon port is burried, and, I can sort of 'know' its painful and horrible, but... at the same time I can't feel a thing
Mind, ahving said which... the yesterday she so knew exactly what she was doing with teh port; most nurses seem scared by it, miss, and take like four attempts or something, or go in at the wrong angle, shoot out teh side, and impail more muscle and surrouding tissue than is necessary, as in, any but yesterday... she just knew the correct spot, and angle, obviously, and went in, and I barely had to make it not hurt, it almost just didn't as it was

oo... must be nearling dinner time... so little energy to make anything... I've tuned into sucha junk food eater since I've been ill... yeh... yeh... I know, excatly the moments in time I ougtha be eating decently, getting plenty of fruit, veg and fiber and stuff, and I'm so just eating utter rubbish instead - pizza from the freezer tonight I think, its about all the brain capicity and physical energy I think I can muster to make hey... but pizza has tomoato sauce on it, right? and that is a veg... so ... well, OK its a fruit actually, but, same thing... and cheese... that's from milk which comes from grass and grass is a veg surely... won't need fifty minutes steralising the kitchen to cook pizza either... and I've so not got the energy for that...

Cool old Guy just had a pizza
"Yesterday I made some kind of stue with loads of carrot leaves and the remainder of the leaves of a colliflour still good food.

If you only drink are you then total ? "

"cauliflower, sounds similar anyway "

As much as it pains me to say so... I really don't think I could actually stomach a beer, at all right now : I'm really rather convinced I won't make it to the Cambridge beer festavil this year though there is a chance I may sort of, if a friend, who lives miles and miles away, is visiting it, as he often does, then I may suggest, as I really probably ain't well enough for the beer festavil itself, we do as we have done, in the past, soemtiems when he's visited town, and meet in a nearby pub.... and... OK.... as it'll be with him, I will probably have* to have half a pint of beer, if we do this... but...
Not seen him since 1st s september... which is the date when my memory loss goes back too... that was teh funneral of our muttual friend, and, well, a guy who was my partner for ten eyars, before I was with William... who died of cacner.... about the last thing I can recall back in time, is taht day, and being at teh funeral.... actually, I think the mututal friend, probably doesn't even know I've been ill... err.... actually no he won't, I've not had any contact with him, since the funeral
I'm starting to get a bit.... ed out by soem of the coincidences in my life anyhow, that'll depend if he's visiting the beer festavil this year.... which I gues he'd do on .... week saturday I think ... week today.... yeh... I think it must be...

so... tea... water... juice... and coffee for me, in the meantime but... mainly tea

Cool old Guy on a
"Well I am really sorry to make you

You know him so you have his phonenumber somewhere?
(or email or whatsapp or . . . ) "

Oh.... don't worry!; It was something I'd already thought, of a few days back, with noticing the beer festavil was approching here, that he might be turning up in town.... - was kinda looking for a way to 'reconnect' with him, as I only knew him through the other guy I knew,... so wasn't exactly really close friends with him, but, well, we both knew C, and of course both upset when C died back at the end of August after having had cancer for a very long while - I must try get back in touch with him I've his mobile and I thnk maybe also E-Mail from when he was keeping me up to date with C's illness as he went into final stages of his treatment etc

in otter news:


*holds aloft a perfect, beautiful round orb*

behold!

behold!

behold, the egg!

Behold, behold, the Dragon's egg! (*thinks, hmm, this could be misconstrewn )



A..... bath bolistic, the Dragon's egg which..... within a short time, I shall, in my bath, detonate also... bhold..... behold.... for, I have alos: also:

*holds aloft Ceridwen's Cauldron *

yes... a bath melt of such luxuary and* a dragon's egg!

that, is just how crap I'm feeling! this has to help!

and, I've already got some stupid dancy tunes lined up for the big hifi.. and I don't care... I don't care that my knees, ankles, hips, and leg muscles are seemingly barely working today.

I'm gona bath. then I'm gona dance! this.... could end... amusingly but... it so has to be done - to insanity, and beyond!

Have they talked to you about the neutropenic "clean" diet?

There's loads of restrictions, some for when your neuts go below 1.5 and even more when they go below .5. But my mum's so used to it she sticks to the rules even when she doesn't need to. Whatever. It's got her to 20 months, when we were told she had 3 at most and she's only had one bout in hospital like you describe.

No touching the outside of fruit or veg, especially if it grew in the ground. No dried fruit or nuts. No bottled water, no herbs, spices or pepper. No live yogurt, no ice cream, no soft or blue cheese at all, throw away hard cheese after it's been opened 24 hours (we buy individually wrapped kids lunch box portions which are perfect), nothing from a deli counter or salad bar. Don't cook food in a microwave, don't dry plates or cutlery with a tea towel etc etc.

Tinned food is good, due to the canning process. And run the tap for at least 3 minutes before you put water in the kettle for all that tea. Mum also finds one of her drugs has contraindications for milk, so she has to time the gap between tablet and tea. She has a "tea window" in the day.

err. nope. no one has ever mentioned any of that! seriously? cheese? even chedder after 24 hours? I keep that and carrying on using/eating it for the rest of the week... err.... its just cheese no blue cheese? oops! err.... no veg grown in teh ground.... err, so like no veg? oops. about the only veg I eat is salad... really, or mushrooms, maybe onion, garlic, etc
nothing microwaved?! oops.

run teh tap for three minutes?! oops! err....

But.... as far as I can tell, with the exception of my second infusion (1B), when I was 0.25 on my neuts, I've not actually been overly neutropenic at any point; I'm 5.9 on my neuts, as of the bloods taken yesterday which is really high, only err... about 8 days after the last chemo (I was 5.6 on the day of the last chemo, I.E., just before it), I think from memory think I dipped to about 3.6, 3.9, about cycle 3 or thereabouts,

One of the main problems, is that I'm blind; I do pretty much everythign by touch... - yeh, I'm washing my hands ten thousand times a day, and using alcohol hand gel twice that much, but even so, I' can't wash, or alcohol-gel them, each and every time I touch a surface, doorframe, handle, desk, table, chair, etc., etc., and, of course, I'm not the only person in this house, adn there is limited control over that, although I have tried.

The place here is filtyh, I don't have the energy, or concentration to clean it like I normally would; plus, I can't touch any chemicals with my bare hands, as I now seem to get chemical burns (side affect of one of the chemo drugs); I have to do everything by touch; I can't properly feel what I'm doing, even jus wearing surgical gloves (I've a big box of200); and, as often as not the surgical gloves split anyhow when I'm cleaning...

of course, that's only one way I may be getting infections; apparently I'm not ment to use public transport as I'm on chemo. I don't drive. I can't get to hospital for chemo other than on the bus... and, I guess I could just lock myself away, not go into town ever or into shops where other people are... but... really? I need to get soem exercsie adn fresh air somehow... I start feeling seriously ill and depressed if I just spend days and days without going out, just stuck in this filthy house.
yeh, plus of course, everyone has a dishwasher err, nope I don't so I can't wash my dishes at the high temps I'm ment too

less than a month to go now anyhow.

It'd be nice though, were the hospital to have been better with communication, and telling me stuff.

they must have told me a whole bunch of stuff, in the way back; I'd just had a haemorridge, and had entirely lost at least 6 months memory. I didn't know what year it was. they've not then provided any information backing that up, in any other formats; print, electronic, etc... Quite frankly for a so-called center of excellence, half the time they dont' seem to have a clue waht they're doing;

last chemo session none of the chairs were cleaned between patients, let alone steralised.

yesterday they did my X-ray; they'd not cleaned/steralised the pannel before hand.
the PET scan I had was on a non seteralised non-covered scanner be bench, and as the scanner is in a 'mobile unit', the blanket they gave me because it was freeziing cold and I was shivering whislt I wated for the radiation to spread out in my body, was ... clearly just used for everyone - I could have just as easily picked up an infection during my last chemo; they were rushing patients through so quick, and not steralising cleaning teh chairs, tablets, or anything inbetween patients. - I've my own hand steralising gel with me, wheverever I go (the alcohol gel); both my coats have one permianntly in the pocket; there is one in my handbag; my jeans useually have on in the right hand side pocket; there is always one next to me on teh sofa or in front of me at the table, there, and I've one in my bedroom on the dresser, as well as the two in the bathroom and kitchen. and the hospital.... can't even clean teh chemo chairs, that are of the sort that are made and bought espcially becuase they can be cleaned...

Mind. could be worse. they coudl have fobbed with off with a substandard doctor last time, who wasn't a consultant, and who didn't bother to examine my chest, so I could get permission to recieve one of my chemo drugs... ahh... o h, they did that, then made me wait 6 hours.

But... such trivia's are but the fabric of life... and the WSOGMM of that which we sail through and... that X-ray opperative/nurse, was so flurting with me yesterday.... hmm... I tought it a bit odd when he asked me to remove my shirt, they've never done that before, for a chest X-ray.... but... then... when he.... insisted he moved my ribbons out of the way.... oh... MMM... really...

Its all fun and games, until someone gets hurt..... then the fun really beings

Very zen and chill ATM after another epic bath full of Lush products

Hmm. talking... thinking of hygine... and ... steralising things... or not... and stuff... actually... oops... I bet there are a few things one isn't ment to do whilst on chemo... which... they've not menionted to me - I do what I'm told. if they dont' tell me must do laundry tomorrow, and try get some housework done, W will be here in the afternoon, to stay overnight so plenty of theraputic and my being able to curl up in his lap, and just... be... petted

Must get more pizza tomorrow. I seem to be living off frozen pizza. its about all I've the concentration and/or energy to cook half the time

Cool old Guy on his head
"In a sense i know how you feel do not be bothered too much, you will manage . The state of you are 'normally' in prevents you from too much disaster.

Your body micght be incapacitated from many things but your mind is still capable of handling things the way they should be.

and beeing the true and only BoB is thy way to be (first time I really used that smiley)

I just had a you will join us again with those soon . . . surely.

Now my job to find the right mouse to post this . . . "

Exactly.

to slightly..... steal, and ... utter.... sorry... otterly, ruin a recent advertising slogan;

"This isn't just cancer, this is 2legs cancer".

I can't just.... have something like that... and... just ... do it all normally... that' be just so not me

I have, naturally, been using most of the time my body...... has not been my own body... to retrain parts of my physical response to given stimuli and develop some...... new..... sort of ... tantric.... responses which... is.... kinda useful when you've suddenly been lumped with a body quite as useless and rubbish as the one i seem to have... right now... its got no stamina... no energy... way too much capicity for bad hurty and bruisy at the silliest of 'light' ...... touches... so... it was necessary to.... go the opposite direction

turns out. My brains still good for some things..... such as.... retraining in this respect of ... sensory inputs and suchlike

turns out.... I'm quite sensative to ... sensations such as... I dunno... for example.... the sensation of breath from another person on my skin.... just amazing I have, natch also really focused back on my already present pain processing techniques........ and hopefully.... once I get my old .... younger body back, they might get put to use once more

Bits of brain work. bits don't.a lot is probably just my concentration being so otterly shot.... - that even makes things like trying to cook a meal nearly impossible.... - if there are several ingredients i can't 'handle' figuring out how to put them together to make the meal... unless I do it really slowly, and in sections;
not helped by my lack of physical coordination and finger/hand strength, plus loss of finger sensativity; I have to ensure all ingredients ar eprepared before I start; I can't guarentee I'll be able, to, E.G., cut up the veg as quick as I useually can, or suchlike; so can't start just cooking with one ingredient, when its ready, and know I'll be able to get the other ingredients parepared in time to go into the dish, in the right order, at the right time.

A lot.... I think is also... some weird mental thinggy... sort of lack of confedence, and... dunno.... something.... - depending on how things pan out with recuperation and recovery, after the final chemo.... some kind of ... thing for that mental stuff, might be in order...perhaps... dunno. somehow i never think any of that stuff would work on me....