insanity is a luxury of the healthy

people often say to me, you remember that band aqua, they were quite good, and i think yes, they were quite good and i did quite like them in the 90s as a smaller person and for a short time in the 2000s when i was working on gymbus and that was the entire soundtrack.  but you forget, you do, HOW GOOD THEY ACTUALLY ARE. seriously. i need them on my ipod. it is impossible to be sad through the harmonies. impossible.  my favourites are dr jones, cartoon heroes, my oh my, roses are red, lollypop... let me know if i've forgotten any classics.

anyway, if this blog was called "insane ramblings of jes" i'm pretty sure it would have a much smaller readership, so i'll leave that for the moment.

i came out of hospital on sunday, it's now tuesday and i'm heading back in tomorrow morning at 10am.  it's not really long enough to have heaps of fun or fully recover from the indignities of four days of bed-riddenness, but it's still fricking great to be at home, with all the delicious foods and comfortable beds.  last week, and again tomorrow i'm having methotrexate, which is administered over four hours, and they let you out once the levels of it in your blood drop to a certain level, which takes about four days.  before that it's dangerous to your kidneys so you have to stay connected to the drip, which is annoying but tolerable.

the side effects were completely different to the cisp/doxo that i had 3 weeks ago.  that was all nausea, dizziness, heartburn, tinnitus etc, and this one so far has had very little nausea.  the most prominent side effects this time were aching chest pains, which the doctors think

 had something to do with inflammation, and they sort of extended down my arms and legs, so it was painful even to sit on a cushion on a funny angle.  headaches, too, and hot flu

shes.  so overall much more mild than last time.  hoping

 that this week will be similar, long but relatively easy to tolerate.  then next wednesday is cisp/doxo again then a break.

my hair, however, is all but gone.  even though it's enormously self absorbed, i'll include some photos:

what

how

i can't get this stupid photo

when will things learn to cooperate with me

shit to work

why is my text going all over the place

how infuriating.

i think we're back to normal now?  in no particular order, as the photos refused to be told, these include 

a) two normal photos of my fluffy duck hair

b) one of my silly "granny has escaped from the home" wig, in black and white, a kind of "ooooh mr president" or "i do declare" (not that i have any inkling of the historical contexts of either of these quotes) glamour shot

c) an impression of macaulay culkin circa home alone/alone with michael jackson

d) an image of my head as a deranged pokemon with aspirations for world domination

you can assign the annotations as you see fit.

this post really is off the rails. i apologise if you're not following and we anticipate that normal posting will resume shortly.

so the point is, i am kinda bald. which is fine because i don't really notice it and my head feels much better this way, but bad because it's really shiny and obvious and everyone seems to feel a bit sad when they see it.  not to worry, though.  i have hats and scarves and wigs.

thanks to everyone who sent over stuff this week: food, stuff for the ds, TULIPS, everything i'm forgetting.  your support means so much and i wouldn't get through these weeks without it.

i think i'll read angels and demons this week.  the russell brand autobiography really is good.

miss you all, have a good week. xox

looking forward

i can touch my own scalp!  i can touch it!  it feels very strange, like the head of a baby, quite nice in a creepy womb regressive way.  yesterday i took to it with scissors and made it into a kind of sinead oconnor plus mohawk thing, because the pain and the malting was becoming unbearable, the malting made me have to wear hats all the time and the hats contributed to the headaches, so enough was enough!  and i cut it all up.  it looked quite cool 90s rebellion for a couple of minutes, but today the mohawk started falling out so i guess i'll have to face up to the true shape of my head very soon...

i am heading back into hospital tomorrow, for a four night stay, to get my first dose of methotrexate.  the next three weeks will be pretty intense: four night admission from tomorrow (wed), four night admission from wednesday week, and 3ish night admission from the following wednesday.  chances are you won't see or hear much from me over this time, so don't panic, everything is probably still going as planned and expected.

i'm much better prepared for hospital this time.  last time, post surgery and still reeling from the shock of the diagnosis, was very difficult.  but thanks to the two weeks of recovery my body is feeling really ace, tip top shape and ready for the fight.  i've put on a few kilos in preparation, i've shaved my head (that's part of the psych up, i'm thinking natalie portman, don't shoot me down) and i'm ready.  and thanks to the extreme generosity of friends and family, i have magazines, a NINTENDO DSi WITH HEAPS OF GAMES OH NO NERDY, books, dvds, nicer trackies and cardies, chocolates... you get the picture.  i'm as ready as i'll ever be.

i'm wrestling with my 3000 word essay at the moment, and possibly going to stay up all night trying to get it done, especially if i keep writing blogs and going on facebook instead of pulling it all together.  i've really thrown myself into this one and it's been a pretty torturous process but i'm hoping that the finished product will be something i can be proud of.  for self-encouragement purposes i was word-counting my notes, then making a percentage of the overall word limit, so when i'd done 900 ish words i had this encouraging "you're 28% finished!!!" headline, except my notes just kept on going and now i'm 120% done (!!!) and still haven't technically written a sentence i can submit.  hoo boy, it's going to be a long night.

but the thing about all of this is, i'm looking forward.  not just in a positive envisionment=realisation way, but in a really pragmatic way.  it might be easy to whinge and say i want my life to go "back" to what it was before, when it was simpler and normal, but realistically i want to go forward.  i'm thinking into the future on the other side of this experience.  i don't want to eliminate the experience because i want to take it with me, but i need to know there is an end in sight.  i'm working so hard on this essay because i want to do my honours in this subject.  i want to get my degree and have really learned and thought about the world, and i'll take this experience on as another learning challenge.  so forward thinking, everybody!  nostalgia is a waste of time and energy.

hope you're all well and busy, and i'll write again as soon as i feel well.  every day the cancer gets a little bit more fucked. :)

hair :(

hair started falling out in the shower today.  fortunately so far i haven't had the burning scalp and itchy sore head that other people have warned me about.  i woke up this morning with a bad headache and when i got in the shower it just sort of started coming out in my hands as i washed it.

i had a few quick tears of panic that i wasnt ready to be the bald "cancer girl" to everyone yet; so far i've been able to avoid feeling like everyone who sees me knows, and the crutches could be for anything.  i know that being bald will mean i have to deal with more staring and the fact that more people will know or guess immediately when they see me.  which might not be too bad, as it means probably less people will say what have you done to your knee? which can be quite awkward.  but on the other hand, people won't recognise me straight away and then there'll be the whole, oh, you look so different! and i'll be able to see the cogs turning slowly as they think, oh dear i've gotten myself into something awkward here, and i'll have to laugh it off and eugh annoyingness.

but what can you do.  i've got a couple of beanies (good luck it's winter) and i'll try to pick up a few more.  so far i'm not keen on a bandana but i might get there.  and mum is looking into a cheap wig, maybe just for going to the shops and stuff so i don't have to be stared at by children and old people and people without social skills.

i just pulled my hair back into a ponytail when i got out of the shower and cut the whole ponytail off, so now i have a messy spazzy bob for the moment.  i'll see how bad the falling out is over the next couple of days and might shave it before i go back into hospital, we'll see how it goes.  it's not a good feeling but it's not the worst and i'll be ok.  just don't stare when you see me!!

day 11

today is saturday, may 9, day 11 of chemo cycle, next admission may 20.

feeling great today. woke up with a blood nose, but other than that feel pretty much normal; normal energy, normal appetite, no nausea, no desperation to get back to bed.  it's frustrating because i want to do something today but i am limited by

a) can't drive

b) can't walk far

c) can't stand up for long periods of time

which is basically the problem with everything. i really wanted to go out last night, and there was a gig at the hifi bar to which a few people were going, but logistically i knew that the hifi bar has a big old staircase and no chairs. so even though i feel fine it would have been impractical.  i need ideas guys!  what can i do to fill my time?

it's such a weird feeling because everytime i've left the house so far it has been this kind of tokenistic, you can do it affair with no point where i just move to a different location, sit down for an hour, then go home again and sit down and say well that was exhausting.  i'd love to be able to do something that has a point and is useful, like go to the supermarket.  i really miss driving.  maybe if i go for night time drives it won't be as dangerous.  the actual act of driving and normal feet on pedals apparently isn't dangerous, it's the risk that i would need to slam on breaks and sudden forceful weightbearing would shatter my knee.  so maybe night time driving.

this post is weird so far.

more generally:

i still have my hair, though it is malting and i'm scared to brush it. i want to just put it in a ponytail and cut the ponytail off and have some kind of crazy short jagged thing but i am aware that to everyone else it will seem like an awkward emo "oh is this how she's dealing with it..." kind of affair.  but it's not, or at least it isn't until the tears start flowing and i'm pulling it out in chunks going why why why my beautiful hair like repunzel. joke. obviously. ugh. cancer irony is being totally ruined by this experience!

there are these two men, ~ 75 years old, who live in our street.  they share a flat and everyone assumes that they are probably gay.  but when they walk to and from the shops they always always always do this weird, contrived thing where they walk 100 metres apart.  i don't know if at the shops they meet up, and one leaves a minute before the other, or if it's a stand at the corner and wait while other one moves an unsuspicious, ungay distance away and then walk kind of scenario.  but it's really weird.  i just sit here at my front window and watch, one goes past at 11.51, and the other at 11.53.  a couple of times every day.  actually starting to worry that i am becoming rear window like character with crutches observing neighbours and soon going to end up in tangled web of deception or similar.  hm, wouldn't be the worst thing in the world.

the overall point of this pointless update is that i am well. bored and well, reading the da vinci code (very exciting), finished both the bridget joneses.  any good book suggestions?  any good outing suggestions?  think i might venture into the city tonight, if anyone is going to be around.

next rounds of chemo:

methatrixate or something

may 20-24

may 27-31

cisplatin and doxorubicin or something

june 3-5

then another two weeks break

surgery vaguely planned for julyish

day 5

day 5 after chemo, feeling ok. can't do much. sorry i haven't replied to messages and calls. mostly just lying down and feeling weird. haven't had any inspirational thoughts to share! ate a fair bit today which was good. think i might be going insane, or the ghost is back. i'm still going though~