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

saw the consultant this morning. Sadly not the .... female one who called me a 'drama queen', and who tends to get fits of giggles every time I speak. but. but. the slightly more sane consultant, and, perhaps, most notibly the consultant who said two words to me this morning, in particular. Two words, which, have not fully 'sunk in' yet, and, which, for reasons of extreme annoyance, and willing suspense of soemthing, I am, slightly, dragging out reprinting here.

So tired now. early start; up 7.
Hmm.
so. the two pints of Adnams last night, in the pub, followed by the Guinness, back at home, and going to bed circa 2 AM, was probably not the bestitits idea i've ever had... but... sod it...

so up 7, left to bus 8. bus so late ; we shoudl have just walked we'd have got to hospital quicker.

Then the familiar 'check in', and 'go get bloods' request; wow, got into bloods so quickly.

The cute nurse we've not seen in ages, was back in bloods; he'd been away on holiday, for like a month to Dubai...
lucky sod...

nurse stuck the plaster thinggy over the needle insertion area, before I noticed she'd even got ready to stick a needle in

Then we saw the consultant.

PET scan results.
He said some stuff.... which included t the two words;

"complete remission"

They're the two words... which, have not sunk in really yet.

the metabolic activity score was 2. - 1, 32, or 3, are 'normal', as in, totally normal; not useually a bracket of any type, I'm either happy to be in, or used to fitting in, but, given the circumstances, is, nice to be in, once more. - True 1 would have been nice, that's like.... the absolute dogs whatnots... but... 2 is. amazing.

After only 2 cycles; they'd booked me in for 6 cycles, and then radiation, afterall.

Talked to consultant some more; they want to do, what I wanted them do do, even before I found result of PET, - although I'd predicted the result. so;

2 more cycles chemo - then the radiation.

2 more cycles = four more infusions; had an infusion this afternoon = 3 more infusions left, then the radiation; just... just for 'fun' really, or, just I guess, for absolute make sure; - seems my recovery time was quick; my bloods today were so up, platelets, neuts, white blood cell, HB, etc - and, yesterday, having finished the antibiotics day before, I was... seemingly pain, muscle cramp/pain, joint aching etc, free; although, actually I'd just been ignoring/blocking it so much, I didn't really realise that, until about an hour or two again; when they all reappeared after the infusion, this afternoon.


infusion took forever.

not true. getting the infusions started took forever; drugs too an age to come up from pharmacy

visited the pub on the way home. lanlord gave me a pint for free

late dinner.

Think I may deserve a can of beer before bed.

and. to think... some people didn't believe me wehn I said I was invincible and indistructible; I think even the sensible consultant today, is kinda starting to believe me...
oo!
found a fabulus fish n chip shop near hospital!=- had haddock and chips, before chemo and... it was so gorgeous... - well, a few more trips to hospital, for chemo.... = a few more of the fish and chips I do believe I'm gona get so fat

but. but. but. the consultant said 'complete remission', and. and. so. err. This feels so odd. - now, don't get me wrong, I'm useually a fan of odd, its synonamus a lot of the time with weird, and I thrive on weird. so. bring on teh chemo and then lets get the radiotherapy on the road.... that could be... all kinds of new odd... afterall
'omplete remission'. hmmm. I think I like that phrase.

And a free beer too

Congratulations on the great results!

Fabulous news, 2legs!

Yes; Gosho a free beer! - Buffys mild - I'd not gone to teh bar myself, I'd nambbed a seat in the beer garden, after a slightly.... rushed quick visit to the loo (by my calculations; saline, plus coffee, plus water, plus tea, plus chemo drug infusions today - = something like 5 litres of liquid either orally or direct into my veins over the course of teh day !) - Buffys! the bar manager (he's not teh landlord really), knows me too damn well! - I adore buffys; used to drink it when he briefly ran another pub, over in Norwich! he remembered; I gues William had told him of my resutls today at the hospital

I'm so lucky; chemo; it bought two things to mind, when I first knew I' was gona be having it; the being sick, and the loosing weight (oh, and the hair loss too); well; I'm eating like I'm pregnant and putting on weight, ; I've still got .... a somewhat smaller and thinner pony tail!; and, I can still taste stuff, as good if not better tlhan pre-chemo (and pre giving up smoking mind), and, I'm still drinking beer, and not doing no 'sick' nonsense - all the pain c**p muscle weakness, fatigue, joint aching, pain, back che, feeling of gout in all my joints; taht's... thats jsut pain, I know what to do with pain but, not feeling/being sick, not loosing my appertitite, or ability to drink veer (yeh, and even having drink last night; I.E., night before chemo); Its hardly like being ill at all, in so many (physical) ways and... still being able ... to a limited extent, in some ways... enujoy...... certain other activities so not like actuall being ill

weird thing is... I know they can't.won't don't say 'cured', its... inappropiate. but 'total remission' kinda feels like that hmm, though suddenly its reminding me of the phrase 'total recall' but... its so sort of is* 'cure' in my head, at the same time I know it ain't,; and, also at teh same time I know I've the rest of April and all of May with chemo, and then some time with radiation, kinda, suggests 'not sc cure'... cancer ain't like other bits of being ill...
Its not got a single 'end'.... this isn't the end, though the phrase, sure sounds like it oughta be; the end of chemo, or indeed, radiation sort of seems like it might* be, the end; but, I know it ain't; there's check ups, probably a finish all scan again (maybe a one then, on the score woudl be kinda cool, and a bit more 'final'....), then theres six motnhly che checkups; then yearsly..... ; then checks on my heart, and lungs (increased risk of heart dammage due to bleosine err, sp, chemo drug), and on lungs; dacarbazine side-affect is increased risk of lung cancer, and other lung opr problems... so... it kinda don't have an actual end... Though I think I'm going to give it one...... not when the 'treatment' finishes.... not now, on recieving the 'complete remission' label...

something far more....

delilscious err delicious oughta be the 'end'.
and.

I've got an idea.... so deliciously.... nonnormal its .... delicious times ten and. no. for once. I don't think I'll share it.



not..... for ... because of any embarasment... or... shyness on my behalf... heck, I cna't recall how to do either of them, to be hoenst.... but... because.... no sharing it.... makes it even more deliciously evil an idea and.... desirable...

oh. yes. if an 'end' point, of ... a point, in time... and possibly also place.... and, most certainly.... activity... is required... I think I know what it is... or, at least, what it really relaly should..... or perhaps even, shoudl not, be

damnit. I love weird.

I got a little distracted with ..... having had soch such a fabulusly...... '2legs' idea

I forgotified ;

thanks. everyone. really thanks. I know I've been so........... eratic of late... given I'm still on tlhe chemo, I'm guessing that ain't gona change/stop any time soon... err... given I'm me, and I've found so muhch more weird, anyhow, it ain't likely to stop ever, basically.... and... yeh. thanks. err. I'm so lucky. Sir. Ma'am. friend on here, in RL, family, friend. etc. err. they've been, yhou've been. and probably will continue to be, all the moreso given whats ... has and is to happen, are. more than everything.

Psychiologically. I'm not going to be the 'me' I was. err. I'm not the me I was. I rarely was the me I was, as I wasn't always the me I was when I was the me I was being, anyhow. there really never was a me anyhhow... one err... 'thing' is far too damn normal. but the post all this nonsense me. is.... potentially.... not going to be quite teh same.... - just not sure yet... just how not the same... potentially just... 'moreso' TBH.... damnit... taht's almost a fearful prospect to me..... let alone to anyone else. - damnit. I've proven my invincability now. Its probably nearly time to go get some decent weird in my life, when all the actual treatment nonsense is over. is so ... 'me'.... thankyou. right. time for that second can of guinness... then bed I thinks.... W went up ages ago... and, I'm so ....... dunno... maybe tired I guess... at leat I got a decent two or three hours last night, sleep, before I woke a bit before 7 I've a feeling I might manage more than 2 or 3 hours sleep tonight, if I'm not too* late up to bed

you know... admist all the excitement of having an infection, on my extra week off chemo, as it turned out to be, last week, I didn't get a chance to notice all the sensations in side affects from the actual chemo.
Lucky break though, having gone back onto teh chemo, I'm now bein adaquatly reminded of all of them again with a renewed force, which, at least, to my satisifcation suggests, if they're doing 'this' to healthy cells, they're likely to be doing 'something' to any unhealthy cells too.... that might be lurking about and escapting detection on ct, PET or in bloods seems I was correct; its not all over until its all over.... its just determining that point which may be probmatic felt to ropey to make it out to soem of the shops I needed to visit today, so William's gone to themn for me; I'm working up some energy... or just... latent anger/adrenalin to then make it out, soon, with him; need to go get a new kettle, seems my mainlining Tony Ben levels of tea drinking, has finally done for the current kettle, as it appears to be leaking... mind, its pretty ancient and so limescaled up too a new kettle was reuired really, for some time, it gets a lot of use at teh best of time; and with tea seemingly being a front-line lymphoma drug of choice, its had a bit of an extra bashing too, the past couple motnhs
of course, any suggest todays ... renewd onslaught of side affects had anything at all to do with the beer, yesterday evening/night, or the fish N chips, prior to chemo infusions... will be met by utter rebutal I wonder if I can get a purple kettle

Yay™

I can almost hear one evil intruder yelling these famous last words to his comrade: "Well, here's another nice mess you've gotten me into!"

really.... - any canccer stupid enough to think it could survive long in my body - feel like I oughta ask for a refund.... it didn't even put up a very good fight hmm.... mind, I'd still prefer it a little bit, if it was to keep the away from me from now on

I bought a new kettle to celibrate.

apparently the new kettle weights a good 500 Gram less than the old one.... - well, I did kinda knew the old kettle had a lot of limescale in it... but half a kilo? (that's a bit over 1 Lb old money) - I blame............... certain......... someontimes purple haired peroson..... for converting me almost entirely to metric measurements
It seems to boil a lot quicker than the old kettle too; now, to see how differnt tea might takste, made from a new kettle (don't worry, I've boiled three loads of water, and tippe dthem out, p plus rinsed it out several times first)

oo. and must find soemthing to eat for lunch soon.... pain au levain... wiht..... dunno... maybe bacon if I can be bothered to cook any... or .... cheeses

Fabby news!

Deb

Wonderful!

Great stuff! And no need to apologise for being erratic or anything. I can be a complete when dealing with medical shtuff. You've been a meek little lamb by comparison.

Hey, maybe you will be able to go to Sweden in August, after all!

Yayyyyyyy!

I think Not* going to Sweden, in August, was never an option. Screw letting some little rubbish like cancer, stop that having happened plans... will be firmed... and dates... sorted soon... and flight tickets booked.

you know... or not... above a little bit I dropped in somehwere about the 'end' of this little chapter needing an actual 'end', a 'final end', - to help solve the cognative confusion, of it looking like having actually lots of sort-of endings, but, no final final ending, within itself; I.E., this 'complete remission' sound like an end... but treatment continues... treatment won't be an end, as they'll then want a final PET I guess, then... etc., etc.,

well. the 'final end' I decided on... the 'closure' if one likes to use such a term.... is... kinda dependant on my being in Sweden you see... just... because...

well. I don't think anyone would expect me to have come up with an..... way to mark the end of this little detour in my life, by anything else other than.... something albeit entirely appropiate to me, almost certainly entirely inappropiate to any.... 'normal' person .... I'll leave the details of it... though... to peoples.... imagination;

whatever you imagine. nah. not even close

by my calculations, end of May should have seen end of chemo, and hopefully start of radiation, that gives most of june, and july to lose half a stone or more, regain muscle texture, and strength, take a short summer trip to my Dad's, maybe get away with William for aholiday/break, and ... do a few other things put off recently...

ahh. screw it. think I'l try start the diet and getting fit stuff, before chemo ends... although.... the fatigue is certainly back with force... or is that farce.... still managed.... a few things earlier, with William before he left. My..... labido... appears to have taken a vacaition... and returned... rahter more refreshed than i feel like I've energy for... but... far be it from me, to get in her/his way

I always knew you could do it

Who else in the world could outweird cancer?

egg - xactly I just need a new... even more epic challange, to outwird next

today was a nicely weird day

woke up. got out of bed. so far so good. only a couple minutes sitting on the edge of the bed, waiting for everything to stop spinning round whilst my blood pressure figured out what it should be doing (actually; having a spinning room; in front of your 'eyes' whilst your totally blind, although not so much a novility now, as it was once for me, is still, in itself, a wondefully weird experience.... really... very odd... )

I even remembered to get dressed, appropaitely.... well, more or less appropiately... knickers. levi skinny fit Madonna 32" waist jeans, big black leather belt taht I had handmade by the cute austalian guy on teh market
regular shirt, purple actually, cotton... hmm...more of less male shirt actually

collar. purple, suade leather
chaincmail braceletts/cuffs, chainmail anklet with bells on it

took medication - felt ill.

needed food. - think the antibiotics need food really.

coudln't cook as lodger hasn't wasked up...
so felt really really sick.

nausea. shaking hands. headche.
way too much adrenalin...

eventually worked up calmness enough to do lodger's washing up.
cleaned kitchen.
sterilised kitchen.

fried eggs and bacon, and put that on toast, with butter.

slightly surreal moment;

sitting on sofa; feeling so much like I'm about to vomit..... - then tucking in mightily to freid eggs and bacon.... knowing full well, despite 'brain' telling me tahts is just a bad idea...;

half way through first slice of toast, wtih egg and bacon.... nausea starts subsiding.

luckluy. for lodger. William arrived, before lodger got up; so I didn't stab my lodger to death, and william arriving ment I didn't use teh adrenalin instead, to break my fingers on teh wall. both of which... are probably for best...

took precaution of taking my penknife out of my pocket, before we went into town... calmed down more

went to the habbidashery; bought three more ribbons for my hair; gold red and green; to go with the other 2, purple, and pink I already have; one for each chemo infusion so far

went to charity shop;

found a nice black leather handbag, which I bought; and, quite appropiately, paid for them, giving my money to Joanne, a cross-dresser/TV, working behind the counter

I don't do normal now... am I actually going to be able to fit all these ribbons on the hair band, tie them in bows, and still use the hairband, to contain my remaining pony tail.... - and, will I have enough pony tail elft, after infusion 8 of 8, to have teh hair band, plus eight ribbons in my hair? - I've already got more ribbon and 'bows' than pony tail now <laguH. maybe.... maybe for my last infusion.... I should just insist* I wear my corset... and dress... and... have myself on the leash... just.... because

Excellent news!

I've been following your progress closely, but will probably not comment much. However I fully understand looking at Hb counts and neutrophils etc. My mum, diagnosed with acute myeloid leukemia (AML) in September 2013, was given about 3-6 months.

Well, here we are in April 2015 and she's still the most alive person I know. She's 79 so they only offer palliative treatment anyway but she's been living with it, not dying of it. Her consultant has described her as "extraordinary" and "highly unusual". I think he's writing a paper about her. Her care team tentatively suggested to me that she was "rather feisty".

Last time I took her shopping she was looking at new handbags too! And she recently bought a new TV.

So here's a toast to not being normal.

Normality is so overated goodluck to your mum - I'm so lucky I didn't get leukemia; its in the family, as its what my older Brother died of (childhood leukemia), but, clearly lymphoma, which I do have, is related... Just hoping this is my one an donly, and once its gone, which is now the case, it'll stay so, and I don't end up with another, lymphoma, or indeed, leukimia again at some point

I mean... as fun as treatment has been... I'm not dead set on wanting to make a habbit of it

currently have 15 foot of ribbon in my hair... and pondering if I can still get the hairband on, wen I ad the final 9 foot, for the final three chemo sessions; I'll then need to figure out what to add to any remaining pony tial, for the radiatiotherapy treatment : theyre ensuring overkill, as I was ' complete remission', after in effect, 2 cycles of the chemo; and we're doubling that to four cycles (two infusions per cycle), then adding on some radiotherapy after that... just for 'fun' as I like to think of it

need some new ideas... for more weird though... OK... so I'm in my slae collar... the chainmail bracelts/cuffs, slave bell/anklet, and with now new added plus, of course my ribbons - I'm thinking I'll take a hip flask to my final chemo session Just... because... why not... Hmmm....

oo. maybe I need* new boots.... - I keep thinking of wearing my corset, but, really, it'd probalby get in teh way of them sticking the big needle into my port in my chest and, simularly, that and the teddy... I don't relaly wanna get any blood on them anyhow need... a couple more truely epic weird things.... : Its my job to keep the nurses entertained and amused, afterall... - that's the main reason for W and I being there, In my mind at least

My comment... on teh size of the antibiotic tablets, a week or so back, got the best response yet... virtually every nurse in the place, in hysterics though having my consultant call mea a 'drama queen', was a highlight too, the week or so before that