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

and I'm winning. so far...

Shiftin a whole p[ile of ... stuff from spare room, into loft, to make some space.

jus tmoved ... a dozen guitars in cases. two massive monitor speakers to move next.... - having a tea break first... =- lots of trips up and down stairs... muscles seem fine in legs.... not short of breath (good sign haven't got too much lung dammage from b bleomycine) blood pressure going mental though as I@m moving about

kinda funky light headedness.... sort of remanistant of ... certain affects of certain.... perhaps not toally legal recreational drugs... err, not that I'd know about such things, of course. I'm way too angelic for that. though maybe an earlier version of me wasn't... not being silly about it though... that'd be silly... so I'm stopping whenever I fell really very close to actually passing out... - gotta teach this body who's boss again. now I'm finished with chemo (unless nastyness reveals later on on PET of course, and I've got a return to ABVD, and/or move onto a more hardcore chemo, etc, which is, a bridge I'd prefer not to have to tackle, but, if I do, then I do; I'll out-wierd it whatever it is. I'm indestructible).

appointment through today, for next clinic for oncology; oo... feels like a 'new stage'; its a new refreral in effect; moving from Thursday chemo oncology/haemotology to the oncology/haemotology clinic, for, dunno, sort of post chemo checking up, etc, and which will soon, hopefully move into radiology talk too

yeh.

gona sound odd, but, kinda now, I just can't wait for radiotherapy to start. sooner it does, sooner its over. - could get side affect from radiology, may not... who knows; fatigue is most likely I think; well, I'm kinda gettin used to that now, anyhow, from teh chmoe.


sleep is still my killer. I just don't do it; 8 hours I think, over the last three nights; one night owas the night before chemo; then had one hours sleep day/night after chemo; yet I was so utterly knackered!

got about four hours last night I think

chemo went fine. I guess... sort of just 'another day in the day clinic chemo ward', I guess; had to surrender my battle with Dacarbazine; I won, I think; over time I'd asked them to speed it up... more and more; started over an hour for the dacarbazine infusions, alone; had gotten down to half an hour, last chemo ; 4A; but, I was stargting to smell it, coing through my skin, as it pumped in; and could smell it on my skin, for days after, and in my urine, too, big time ; that, the dacarbazine, hs another name, which I prefer; Red Death yeh, think I battle red death and beat it into submittion

but.... they increased it back from t thirty minutes infusion to forty five yesterday; no smell/scent, and only the useual moderate urine smell; its the one that gives me red pee for a few days ;a lso teh one that means I should* be weraing sunscreen whilst out, as it gives one skin cancer; its ultra light sensative; they even cover the bag, and drip tube, whilst I@m being infused so light can't get to it

amusingly; its a major emergency if a tiny, tiny drop accidentillyl lands on ones skin!; its that toxic and dangerous a poisen!; yet... amusingly; oh yes... absolutely fine to pump 700 plus ML of it, striaght into my heart basically

chenmo is ... such a stupid thing, so... blitz creeg... so oer th top... so undirected... but... having said whihc. seems its worked. as I was clear of lympohma evidence, a fter just the two cycles. so now I've done four... hopefully there is pretty much sod all left.

more radiotherapy to come than I thought, perhaps three weeks of it (five days a week)..

Bring. it on.

I'm gona find a spider to take with me, in to the zapping room... want my superhero powers... mainly, it has to be said, just for an excuss to wear lycra

had my good consultant this time, in the morning clinic, w so got to talk to her poerprly like an adult to an adult, and mention several side afect things.

she examined my graoin...... critised my chosie of underwear and trousers (too tight apprently), but no sign of infection, just sore... maybe just dry skin, maybe an ingrowing hair, using vasaline as barrier cream, which seems to have worked well, already, plus extra moisturisation after bathing or showering, of course err, not that I really under-moisturise anywhere, to be honest

gona take her adivvce, as I'm such a good boy/girl these days.

so. gona try find new pair, of looser trousers tomorrow... maybe Mc hammer stylee... or, just invade the second hand shops, see if they've any loverly coloured, matterialed (velvet?), female trousers... that'll both make her happy, and sigh in .... utter disbelief, at me, as per useual well... its gotta be something silly, or vaguely.... nonormal or its not me, lets face it <evilgrin<

also, as to her instructions, and those of the second clinick I visted yesteray, gona have to get me a pair of funky sunglasses; to prevent eyes getting so dry, from sunlight, wind etc, when outside; second clnic yesterday was eye clinic again; still no sign of infection in eye, sto no more funky cream junk to stick in; but new eyedrops slightly more 'stronger' than last ones... more gel like, wmakes them harder to put in, but yeh, the affect moisturiign the conjunctive membrane lasts longer I guess...

getting seriously dusty eyes now, going in and out of loft!

first clinick yesterday 9(yes, two days at hospital), was endochrinology.

fabulus results. don't have autoimmunity. was pituiary related addison's/adrenal insufficiency, as I predicted.

also finally got conformation from sensible oncology Dr, that they've looked at me scans; no evidence whatsoever of secondary ly lymphotytic infiltration of adrenals (I.E., there is no cancer spread to the adrenals to account for teh Adrenal insuficiency/addison's)

also; no penitious anemia, no hypothyroidism; maybe some cross-wires there, so not sure I'm ment to be on the folic acid... - maybe I am pregnant afterall ; OK, maybe a possiblity the folic acid is to help wiht the neuropathy (loss of sensation in fingers), but I'll ask about that week Wesnday at new clinic for oncology

gona book to see GP this week; to get re-refrered to neurology, and to try get to the reason behind my dangerously low low blood pressure; both oncology and endochrinology seem to think its not their kettle of fish - no idea what it might be, yet... very dependant on position; if i bend, it shoots down, if I walk for an hour, its higher and ... not high, but approximating normal, and I feel better ; so prbobably not related to any actual heart damage, I think... or that'd go teh other way, I think

right. must dirnk this tea, then shift more rubbish about...

Cool odd Guy wearing sunglasses
"Can not wait to 'see' you after the radio therapy. If you react in the same way rays will poor out your skin .
And you could write your name illuminating in the loo .

Suppose you are wearing the white ribbon

Little about your staircase behaviour, well if only I could be bothered to make my body act similar "

<yikees. your still being blocked or soemthing? why? (can't read that message yet) how annoying! (for y ou as much as anyone else wanting to read it!!!2)

Well. moved a massive pile of junk from spare room.... and thrown all ontop of the junk already in loft good exercise I think, and ... not really getting faint actually... much... if anything its making my blood pressure go up; more like it w oughta be! rahter than being low... now just need to do major dust removal in spare room then can think of moving some bits of things from my bedroom, into spare room... - this isn't actual getting rid of junk... its just moving the floating junk about!; soon. ...... 75% of my posettions will leave the house forver.... I don't klike owning so much stuff... its... pointless... minamilism is where its at... well, for most things... just need to keep the actual stuff that is used, and of use! In some ways... I'd so love... to have the bottle one day... just to... throw away everything I own... and start again. from scratch. of course... i'd never be able to do that...all my vinyl?! I remember buying each album, even the ones I bought when in my teens and... damnit... yeh, it'd be so impossible... all my guitars? all my hif stuff? just keep this... and that... and that guitar... and those ... well..... and of course, I can't get rid of the canes, and torses, and chains, and cuffs, and .... otter toys or my rubber ducks fo rteh bath, or the teddy bears taht have kept me saine ... or insane during chemo and cuddled me at night when I'm here alone

nearly broke down in tears again. earlier. found some... well, its a bit of junk really... which somehow remained stuck in a corner in a set of drawers... but.... I know exactly from when and where it came.
a day out, in the summer, several years bak now, not sure when (three? four? something like that I think, was a loverly hot summer day, m ay July, maybe august I think).

William an I, by the river in Cambridge, loverly day. so warm... proper summers day. and it was a loverly day. heck, I couldn't even risk bein in sun like that now, not with the risk of skin cancer, from teh bluemycine err, bleomycine I mean or is that the dacarbazine.... forget which one it is that makes me photo sensative to some insane level, apparently... and. a day before ... 'this' ever happened. sod it. I'm going to have the cry now. anyhow. then get a cup of tea.

Its weird! I'm only like two days after the chemo.... under normal or previous circumstances... I shoudl be hobbling about moanig about my joints and muscles in my legs! (get symptoms basically same as gout, as dead cells, apopotic cells, build up in joints, I think is the reason), but... at the moment... I was virtually bouncing up and down the stairs (well with the lighter objects I was carrying); notciing the long term affect though!; my muscles! they've gone! ; the big monitor speakres, I now they're heavy... but... not as heavy as they felt today!; that was about as much as I could carry; using both arms; I normally carry them one per arm (only one at a time though, even under normal circumstances, I don't trust my balance that* much!) =- but, saing which, I could* carry one per arm, before... now... one in tow arms.... feels about my weight lifting limit - think tehy're about 50 or a bit less Lb each wspeaker so prety heavy really... but ... een so!

I even did some silly balancing act earlier; standing on a set of drawers, to dust on top of some shelving ; slightly misjudged the distance down.... but found the floor with m y foot, and not any other part of me... so I've still got balance... - which... is genuinely unusual, this soon after a chemo infusion - gosh, if I bounce back this quick.... William might not know what he's letting himself in for when he turns up

Even did a wee bit of DIY; found another one of the useful hooks, and so put that up on the near side of teh wardrobe to the bed.... well.... the flogger hangs on the side of teh headboard, and now, the little useful torse is within reahc too... just hanging below the hook that holds my hair band with all the ribbons on!; soemtimes its easier to wear a regular hairband.... the ribbons are quite long now and heavy!; and yes; sporting the final, eight white one too now!; though already thinking I might add more ribbons; either longer, and/or thinner ones for the radiation assuming my hair doesn't all vanish just before radiation starts (a distinct possibility still)

also found my bag of ool beads today; mixed selection of some very nice glass ones, differnt sizes, and some wooden ones too, and a few metal ones; tempted to sew some on to the ribbons, near the top; or put some ribbons in perminant bows, held in place wiht a centrally sewn on little glass (light) bead or... of course; just attach some metal ones to the end, so I really know about it, when the wind whips them round to hit me in the face hmm.... maybe not I get in enough trubble as it is, whenever I have a scan or X-ray, and I have to take ten minutes removing my chainmail and collar and... stuff - which reminds me... really must fix my nipple chain/bells.... that'd so make the radiologists days, if next PET scan, I've got them to remove too...... - after I remove my chainmail wrist cuffs, last time, and she said "anything else, anywhere else to remoe?" she was I think almost disapointed I didn't have any more.... intimate items of metal work to remove... - I'm guessing she had a good story to tell her olegues, that day, later on aobut the mental blind person and his chainmail and.... slave ollar , - I'm only really going to hospital to entertain the staff.... the treatment is all second fiddle as far as I'm concerned

Y'know, it's too bad there's really no way to read one of the more interesting encounters from the point of view of the staff

all my interactions with the staff are 'more interesting' <tongueout well. none of them are exactly nomral .....

last few times... consultant telling me to wear less tight panties/knickers/underwear.... her calling me a drama queen... oo... a cycle or two back the look o f utter horror on a nurses face, the time I pretended to have an anaphalatic shock (OK, I really misjudged that; I didn't think my impression would be that* good)
My comments about.... sizes of tablets not being an issue... and... err... stuff... (OK I've done that one a few times... some nurses 'get it' others dont!)
err..... the radiologist supprise when he saw me reach for the keys, to unlock my wrist/handcuff/bracelts and when I asked William to remove my collar, same time, before I went for the X-ray err.... and just the general level of total nurse giglging that surrounds William and I..... as they overhear bits of our conversation

and... I think... what was ... basically an invitation to have a thresome I ... maybe accidentially made to the receptionist two days ago, after we'd told her how I 'pulled' in the pub, the night before chemo this week (OK, the girl in the pub pulled me, really, but... same thing.... (the one who played with m y hair and did my tribbons into loverly bows!) and...

I can't do normal!