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As
an ex-musician, sound is about the most powerful thing there is for me.
The sound of the music without my mum's part... well it tore me up. I
had to walk to the lake, far enough away so I couldn't hear it any more.
On
the plus side, I have been immensely touched by how many friends are calling
with their best wishes and offers to do this and that for me. I feel very
lucky to have that kind of support. And my wonderful boss called, not
to ask when I'm coming back, but to ask if I needed anything and to say
I could have as much time off as I need, even though I have no leave left
due to Clarion.
Bad
times really show people at their best and worst, don't they.
Monday
8 March 2004
Life
in the land of cancer
My
sister, Lesley, came to Adelaide as well, even though she's five and a
half months pregnant. We swung into action. We got on the phones, enlisted
everyone we knew. Within a day or two we had a second opinion lined up
with an oncologist, a nutrition plan, a huge super duper juicer, a yoga
class and mat, a weekend meditation retreat booked, and an appointment
with the Cancer Care Centre in Adelaide.
Mum
had the strongest urge to throw out everything, declutter her life and
her space. We had to restrain her from throwing out all her old tax files,
and all her old photos, for example. She wants to get rid of the piano,
the speakers, all kinds of stuff. I took George, the wonderful Balinese
carved wood statue dad brought home from Bali in 1971, which has been
a part of the family ever since. He has settled well into our newly renovated
front hallway.
Flowers
and calls arrived all week, and at one point my sister exclaimed why do
they keep doing that? How does it help? I understand that, because it
takes up energy to put them in water and talk to the callers. But then
what if no one sent flowers or called? That would be way worse.
Everyone
was fraught, and close to tears a fair bit. Mum had a few little cries,
and for someone who cries about once every two years that's extraordinary.
Even more amazing was that by the end of just one day, she was already
saying, I've had a good life, a healthy life, with two lovely daughters
and two wonderful husbands, I can't complain.
I
reckon she has every right to complain.
On
the other hand, she is going to fight to live with all her strength, doing
whatever is needed. As the marvellous Sue at the Cancer Care council said,
some people do beat the odds, and it may as well be you.
Today
mum is having a biopsy, to confirm the diagnosis and work out exactly
which kind of gliobastoma it is so they can work out a radiotherapy treatment.
Apparently
they no longer remove the tumour for this type of brain cancer. It can
damage the brain further and it has no appreciable effect on the survival
rate, so they don't recommend it any more.
It
turns out, according to the second oncologist mum saw, that the median
survival rate of 10 months includes a lot of people who pretty much die
straight away. The ones who live tend to be the ones who decide they're
going to live, and they can live up to 4-5 more years. That's very encouraging
indeed.
I
left Adelaide on Friday and am back at work today, feeling immensely drained.
Mum's good friend Janita, who's a nurse, is looking after her and my stepfather
Michael through the biopsy, and I'm very grateful she is willing to do
that.
Writing
and reading
I
have not read very much since the beginning of Clarion - a third of Kim
Wilkins' book The Resurrectionists, and I'm enjoying it, but I have no
concentration for reading. Who Weekly is about my speed just now.
Writing...
well I'm sitting there every night, mostly, but while words go on the
page I tend to come back the next night and delete them. I'm going to
keep sitting there until it starts flowing again. All the writers I've
ever heard talking on writers block say this is how you beat it. I'm sure
it's not really writers block but just emotional overload, and one day
I'll find I can do it again. In the meantime it's actually quite reassuring
to sit and try to write, an island of normality, even if it's not working
as it should.
Magic
Casements
I went to
Magic Casements, the SF/fantasy festival at the Writers Centre in NSW
on Saturday. I had very little interest in the panels, it all seemed immensely
trivial to me in the context of everything else.
But it was
cool to see everyone. Stephanie Smith, the SF publisher at Harper Collins,
was there. She's very cool, and made me feel much better about not getting
far with my novel to send to Tor. She said, 'we're editors, we understand
it takes time, don't worry'.
I sloped
home in the afternoon for a sleep, (handily I live two streets away from
the Writers Centre). Then I joined the dinner at the Different Drummer.
Chris, Zara, Wendy and Cat were there, from Clarion, as was Grace, and
Karen Miller came during the day. James was moving so couldn't be there,
though I think he's coming to yum cha next week. Of course a bunch of
other very cool people were there too, Rob Hood, Simon Brown, Deb Biancotti,
Ben Peek, Kate Forsyth, Ian and Lynn Triffit (the NSW ones), and others
too numerous to mention.
Dinner was
fun and distracted me for a while. Good to take time for myself.
Tuesday
9 March 2004
Go away,
gremlin!
I don't know
what I did to upset this nasty little gremlin, but whatever it was I'm
truly sorry. He's been following me about for a few weeks now, making
mischief with my life.
Not only
have a lost my filofax, and thus all my address, phone numbers, passwords,
etc; I also lost my hard drive on my laptop. It gave me warning, so I
dutifully backed it up, and tested the CDs. Yes, all the files were there.
I got a new hard drive under warranty (thanks, Dell) and they came promptly
to install it for me.
However,
when I went to install the CD last night, the second one failed. It had
my thesis on it, which I can partially restore from my web site, but more
importantly, all my photos taken on my digital camera since November.
This includes all of Clarion, except for those I had already put on my
web site, and the ones I took of my mum, sister and me in Adelaide last
week, all kinds of stuff.
This no-printing
stuff has definite drawbacks. Thank
Christ I had three backups of my writing... didn't lose a precious word
of it.
And on Sunday
Tony and I went for a quick coffee, and I left my handbag sitting by the
table. I didn't realise until we got home. It had my mobile phone with
the only remaining phone numbers I have (yes, I've not yet written them
in my new filofax, so hit me). Also my writing notebook with a bunch of
new story ideas in it, my wallet, credit cards, and keys. When we got
back to the restaurant, the nice proprietor had kept it for me and handed
it over intact, foiling the Gremlin's plans for a triple whammy.
So... Mr
Gremlin, I ask you politely, enough already. Go torture someone else,
would you? Pretty please?
Life
in the land of cancer
Mum's biopsy
went well, in that she survived with no complications. The diagnosis is
unchanged, and her radiotherapy starts next week.
People ask
how I am. I know I'm meant to say, "I'm fine", it's the right
response. I can't bring myself to say it. Instead, I say, "Crap."
It's disconcerting for others, but I just haven't got the energy to lie
about it.
Doctors
are patronising bastards
Oh, and I
don't think I mentioned this yet. Apparently they knew back in Wagga,
at Xmas, when mum first showed symptoms, that she probably had brain cancer.
We got hold of the MRI report and it clearly says she has a suspected
brain tumour, and that a follow-up MRI is recommended, "to confirm
the diagnosis".
This report
was not given to her at the time, but sent on to her doctor. The doctor
at the Wagga hospital didn't tell her there was even a suspicion of it.
Apparently, this is normal practice. They don't want to 'worry you'. Yeah,
she would've been worried. Worried enough to get an appointment sooner
than six weeks away. Worried enough to do all the things she's now doing,
diet, juicing, yoga, meditation, visualisation... all the stuff that can
boost your immune system.
Worried enough
to start treatment quickly, in short, rather than waiting for the convenience
of the doctors.
Patronising
bastards. Why would she not have the right to know? It's her body, her
life. She made plans about putting things on hold, etc, thinking she'd
get better.
You may think
I sound angry, and you're right. Mum is way angrier. In any case, it's
a handy target for all our negative emotions...
On the other
hand, if she had known, and had had to wait weeks to confirm the diagnosis,
which is likely, would that negative stress have outweighed what she could
have done to combat it? According to her surgeon, it would make no difference,
but he's a bit of a Marvin. Nothing makes any difference according to
him.
Mars excitement
Okay, so
I was under a rock for all of January, most of February and a week of
March. I did see the Mars Rover landing while at Clarion, but I totally
missed Bush announcing a manned Mars mission. I saw it replayed last night
and damn if I didn't tear up. I know I'm more emotional than usual (permanent
PMT-land for me just now), but the idea that anyone is even talking about
space flight again has me thrilled.
Now I read
that they're talking about a piece of "curly macaroni"... a
Fossil....
found on Mars. No one wants to mention the F word, but there's a great
picture of what looks remarkably like a fossil, lying innocuously around
on the planet's surface.
Unless someone
dropped a piece of macaroni there a few billion years back and forgot
to mention it, my oh my, there could be evidence of life on Mars. How
can that not be exciting, folks?
Wednesday
10 March 2004
Life in
the land of cancer
Mum is out
of hospital, and we spoke briefly last night. She's doing okay, wondering
whether to get a Dolly Parton wig or a Marilyn Monroe. I reckon neither,
she's got dark hair and an olive complexion. More the Catherine Zeta-Jones
type.
Renovation
bliss
The builders
have gone. Our dark hallway with black tiles has been transformed into
golden wood, light walls with a skylight, rich red rugs and the Balinese
statue George that's been in my family's house since 1971. It's
a completely different environment.
We put down
a new dog pillow by the front door for our dog Star, to save the new rug
from his night time sleep. Unfortunately the cat had other ideas, and
firmly plonked himself down there. Star looked forlorn, but wasn't willing
to try getting the cat off it. Apparently it's first in first served at
our place.
I've ordered
bookcases for my study, but they will take weeks to arrive, they're being
custom made to fit the weird shape.
A piece of
good news: my laptop is now working. Phew.
Writing
I actually
wrote something that didn't suck last night! I'm writing speculative erotica
for Consensual... I have a demon named Deirdre, who's sick of being a
demon. It's only 400 words but I think it may actually be all right.
I've never
written erotica before, so I had a look at some stuff on the net. My oh
my there's some terrible erotica out there. I suppose its main aim is
not to please for literature's sake. It doesn't have to be well written
to excite, I guess, but it sure wouldn't hurt.
Anyway, it
seems that was the key to writing again - do something new isntead of
revising old stuff. Now, if only I could find my writing notebook from
Clarion...
Thursday
11 March 2004
Life
in the land of cancer
There is
apparently a fabulous brain surgeon who lives in Sydney, he has a patient
who had the same tumour as mum. She was given a few weeks to live and
is still alive 10 years later.
He now has
the scans of mum's brain, and we are suddenly hopeful. Aunt Louise is
going to be with mum from Saturday, probably for a few weeks. I'm sure
that will be a big comfort to her.
Writing
OK, so Deirdre
is apparently not just any demon ("be specific!"). She's a succubus.
I'm worrying that that is a little trite... ah well. I'm having fun with
it. It's back down to 300 words, but I think it will end up around 1500
or 2000.
At least
I'm writing. No sign of my Clarion writing notebook yet. So much wisdom
recorded in those pages... please Mr Gremlin, give it back to me. I beg
you.
Friday
12 March 2004
Life in
the land of cancer
We are now
waiting for the surgeon to say whether he can operate on mum or not. If
he can, the operation will take place in Sydney on precisely the week
when I'm supposed to go to Singapore to a conference. I guess the way
my life is at the moment, that was inevitable really.
Mum has a
new routine: an hour of meditation followed by an hour of exercise first
thing in the morning, which she and my stepfather Mike do together. Nice
one.
Writing
I now have
a first draft of Demon Sex, the working title of my new story.
It is, as predicted, around 2000 words. I recall Kim Wilkins asking how
one can tell how long a short story will be. I'm not so sure, but after
writing a bunch I can normally tell. Deirdre is uncertain at this point
whether she wants to stay in the world or rejoin Hell. I'll have to ask
her tonight.
I read a
few stories in last year's Consensual yesterday to see how graphic they
are. They. Are. Graphic.
Which is
good, because I can do what I want.
Oh, and it's
so easy to tell who wrote what. Why don't they be done with it and give
you a byline?
Lost things
I still
don't have my Clarion notebook. It has all the comments people gave me
on my stories in it, and if I don't find it I will have to resign, from
bloody everything. What the hell is going on? My friend Anne reckons someone
up there is poking a stick at me and saying, hey, let's prod this one
and see what she does.
So I have
a message for you, whoever you are:
Would
ya please cut it out?
Star wars
My dog Star
has endured three nights of no dog pillow in the hallway. Last night he
worked out a new trick. Oscar (the cat) was sleeping on the bed, but before
it was time to put the animals out of the bedroom, he snuck out, and staked
his claim to the pillow.
When I put
Oscar out soon after, he took a long look at the dog on the pillow and
twitched his tail. Star held his ground, but gave a little whimper. Worrying,
no doubt, that Oscar would swipe him, or just muscle in as he has been
known to do.
But Oscar
just sashayed off huffily.
3:1 in the
cat's favour.
Friday
19 March 2004
Life
in the land of cancer
This has
been a difficult week. On Friday, mum sent a copy of her MRI scans to
a surgeon in Sydney, because he is willing to operate on difficult cases
and has a good reputation. He's overseas right now, but has a colleague
who was willing to assess the scans. The surgeon is back in town this
Monday, and available to operate the following Wednesday.
But the scans
were sent by registered post. Who uses registered post any more? Not me.
Basically all they do is track how incompetent they are.
The scan
hadn't even reached Sydney until Wednesday, when it got to the hospital.
Since the surgeons' assistant had apparently made a mistake telling mum
which floor they were on, the parcel was not delivered. The assistant
rushed to the mail centre but it had already been put back in the pile
to go to Adelaide. I mean, it was three floors away from its destination
and no one said, is there a guy by this name somewhere in the hospital?
They just said, not correct address, return to effing sender.
My mum has
14 weeks to live, from the date of diagnosis, if she has no treatment,
which so far she hasn't, and she doesn't have a week to throw away.
So, yesterday
she got another copy, and this time couriered it over to arrive this morning
by 9am. After an anxious moment when they didn't know where it was, it
was located and it got there at 9.30.
All week,
we sweated, waited, wondered... if the guy doesn't operate there's pretty
much nothing to be done except radiotherapy which just staves off the
inevitable.
By 10, the
doctor had mercifully looked at the scan, bless him, and said he thinks
it's a difficult case, but that the surgeon would probably operate. We
have to wait until he's back Monday to get confirmation of that, but it
does look likely.
Mum knows
she could die during the operation, but she said what's the point of living
longer if it's going to be like this?
Her life
has been smashed to pieces. Last year, she had a thriving violin school,
dozens of students, a series of concerts she promotes, two web sites,
a thriving chat list, an e-commerce venture, a string quartet... all kinds
of stuff. Her life was full and busy and exciting.
Now, it's
meditation, yoga, walking, drinking juices, sleeping. She's tired a lot,
and it's an effort to make herself understood.
She won't
be in any pain, apparently, but things will unpredictably just shut down
as the tumour grows and pressed various bits of the brain.
Anyway, this
operation offers one of two things: possibility of an effective treatment,
or death. Either of those is acceptable to her.
On the one
hand, I'm feeling supportive of that, and I totally understand her position,
I'd feel the same way.
But at the
same time... this may be the last week my mother is alive.
It's terrible.
It's worse for her but that doesn't mean it's easy for the rest of us.
I feel so
tender, if you even look at me sideways I burst into tears or get sarcastic.
I'm very stressed, driving through red lights, dropping things, snapping
at people, making mistakes.
I feel a
horrible sense of dread in the pit of my stomach all the time, even when
I'm totally focussed on something else (eg this afternoon when I was teaching
a writing for the web course).
Every now
and then I start crying for no reason.
Writing
I have finished
a draft of my new story, though I don't have even a decent working title
for it.
Last night
I worked out a plot... in retrospect it's obvious now. Deirdre lost her
mojo, and of course she has to get it back. And the mechanism for it was
obvious too, in retrospect.
It just took
a while. One of my colleagues at work was kind enough to let me bounce
plot ideas off her. Geez I miss my Clarion buds.
I'm feeling
a little nervous showing this story to anyone.. it's about sex. Not sex
that has happened to me, and obviously I'm not a succubus on the side
or anything. But still, it's a very personal thing to write about whether
its imaginary or not.
Then there's
the whole terminology thing... manly hardness, or just plain cock? I decided
on the latter. Euphemisms aren't my style.
I did read
a bunch of stuff on the net, some of it was SF. It varies between letter-to-Penthouse,
and esoteric abstractness. Neither of those extremes were for me. The
question is, how much is it about sex, and how much is it a story. Some
of the stories in Consensual swing one way and some swing the other. Thank
goodness I now have a bit more story in there.
I'm going
to do a Nalo, and quote a little from the draft.
*
Deirdre crossed one of Etta's legs over the other to display her thigh.
She smoothed the edge of the drink-straw with her thumb, revealing the
white skin on her inner wrist.
She glanced
at Nikki, held his eye two seconds too long. Maybe this would be better
if she penetrated the target more fully? She was jaded, so weary of it
all. Surely she'd feel it more.
Deirdre
allowed herself to relax into Etta's body, becoming her... being
her.
She gave
a little sigh as Etta's arms felt the breeze play across her skin, hair
tumble against her cheeks.The warmth of the sun on her back, the chair
leg's cold steel cutting into her bottom. Deirdre licked her lips, tasted
the salt mingled with orange juice on her mouth.
Yes, so
much more intense.
*
Clarion
I have finished
the design for the Clarion T-shirt, and it's looking pretty cool.
Check it
out:
Monday
22 March 2004
Thorbies
writing group
We held our
first Thorbies since Clarion yesterday. It was a slightly reduced group,
with a few people unable to make it. On the plus side, Chris and Wendy
joined the group for the first time, great to have them there.
The two non-Clarionites
present, Anne and Mark, pronounced us not too unbearable with our
Clarion references, but I suspect they were being polite.
I was chuffed
that my erotic demon story was well received. People said the sex scenes
"did it for me". It's impossible to tell whether (a) what I
think is sexy other people will too, and (b) whether I can convey that
without sounding incredibly stupid, but apparently I did pull it off.
I have a
little more work to do around the plot, but nothing too major.
Lost things
In Kiss
of Death, the new title of the erotic story, I included this passage:
*
No discussion was possible with the Boss, or you automatically got something
worse - one girl got duty as a low-grade gremlin, hiding people's possessions
for random periods. Now that was a boring and thankless job.
*
I suspect
my gremlin friend tuned into this, was touched by my sympathy for his
or her plight, and gave me my Clarion notebook back.
I was putting
away some of my sheet music on Saturday and there, right in the middle
of a pile of Italian part songs was the notebook.
It had no
business there at all, the gremlin just snuck it back there when I wasn't
looking. Thanks, grem. May you be promoted soon.
Now, about
that filofax...
Life in
the land of cancer
The weekend
has been an agony of waiting to find out if mum can have her operation.
This morning we find the surgeon has only just touched down at the airport
with his family and isn't due in until tomorrow. Unfortunately, tomorrow
is when I'm meant to be leaving for Singapore. Ech, it's all so messy.
Which
movie?
Finally got
around to looking at Zara's live journal.. sheesh. This woman is so cool
she has to have two blogs - too much life to write about in just the one.
Anyway, I
tried this: What
movie Do you Belong in?
To my great
delight, I belong in Lord of the Rings! I mean, it could so easily have
been Power Rangers or Forrest Gump. Phew.
Bags be Miranda
Otto. She's a beautiful princess, gets to go into battle, kill a huge
monster, wield a sword, ride a horse and she gets the guy at the
end. Oh, and she has great hair the whole time.
Thunderbirds
are GO
So my mum
now has the go ahead for the operation to remove her brain tumour. She's
flying up tonight with my Aunt Louise, and Mike (my stepfather) is coming
tomorrow. The surgeon said he can't get to it all, it's too deep, but
he can get most of it. That will hopefully reduce the symptoms, or the
least reduce its effects. Apparently he said it would have an effect "for
a long while", though what he means by this is very open to interpretation.
There's an
appointment with him tomorrow afternoon so I guess we'll find out all
about it then.
I am dead
scared, and mum is too. She may not be able to speak at all after the
operation, and that's her worst fear. Mine is that she'll die.
Tuesday
30 March 2004
Life in
the land of cancer
I have been
writing for this blog during the week, but haven't had the chance to publish
any of it until today, so I'll start with Monday last week.
Monday
22 March
Mum arrived
exhausted, and I was shocked to see how fast her speech has deteriorated.
She is mixing up she and he, forgetting people's names, and just failing
to get some words altogether. It's quite a lot worse than last week, and
now I'm finding myself suddenly angry about the delays caused by the patronising
doctors.
If she'd
had treatment earlier, she wouldn't have had to get this bad so soon.
We sat together and yakked, and she was still reassuringly my mum.
She was wearing
a ludicrous wig which reminds her of Elizabeth Taylor's hairdo in Rhapsody,
a silly 50s movie in which Liz is the sugar momma to a violinist and a
pianist. She whipped off the wig to show off her scar, and oh my god,
she suddenly looked like a cancer patient and I had to believe it at last.
Until then
I think I had been in some small corner of my heart hoping someone would
say, it's all a joke, nyah nyah.
My Aunt Louise
is here too, she looks terrible, tired and anxious.
Tuesday
23 March
Michael (my
stepfather) arrived this morning, and Tony went to pick him up from the
airport. After we had some lunch he and mum went to lie down for a while,
and I could feel everyone thinking, maybe this is the last time they get
to do this.
After lunch
we trouped in to the doctor's office. We got there very early because
mum was so anxious to get there on time, but of course we had to wait.
I filled out forms for her, she finds them too daunting. It broke my heart,
I was happy to do it of course, but this is a woman who only three months
ago was running a violin school, making and selling violin accessories
and composing music for an international clientele, running an award winning
Suzuki community on the net, producing and promoting a series of concerts
in the planetarium, being an active member of the astronimical society,
teaching 40 students, being an examiner for the AMEB exams, the list goes
on and on.
Now she can't
work out how to spell her street name properly.
The surgeon,
Dr Charles Teo, is a young man with a leather coat slung on the back of
the chair and a motorcycle helmet on the desk. He munched on baked goods
possibly supplied by grateful patients, and used words like "bugger".
His assistant called him by his first name. Such a contrast to the other
surgeon in Adelaide, three-piece-suit-dude whose assistant called him
Mr.
He explained
very carefully that the surgery he is prepared to do will remove up to
98% of the tumour but won't get it all. It will buy her time, a median
of a year and possibly as much as 5 years, although some people die within
five weeks of surgery.
There can
be complications, many patients lose speech altogether after surgery or
the use of the whole right side of the body. 15% of these people never
regain it, and those who do must spend three months in painful rehab,
out of their remaining 9-12 months of life.
He said we
mustn't think the surgeon we saw in Adelaide was behind the times or conservative,
that 80% of surgeons in Australia think that doing this aggressive surgery
isn't worth it, considering the range of outcomes and poor likelihood
of the best outcome (no complications, significantly prolonged life).
After all
this, he asked mum what she wanted to do, if she wanted to think about
it. She didn't hesitate a second. I want to go ahead, she said. After
all, what's the alternative?
Then she
turned to the rest of us, Michael, Louise and me. We all said, go ahead.
I had doubts, I admit. There's such a high likelihood that she will come
out of this worse off. But she wants it, so it's fine by me. It's her
life after all.
The surgeon
cheered us a little afterwards by saying, I think you'll be one of "those"
patients, you didn't even hesitate, you have a good attitude, I think
you'll come out fine.
After the
consultation, she was admitted into the hospital. The contrast between
the room there at Prince of Wales Private and Wagga Wagga Base Hospital
couldn't be starker. It has single rooms galore, carpeted hallways and
lights that work, nice nurses, doctors who don't appear to be sick, and
plenty of equipment.
We stayed
there a while, talking to mum, then came home, exhausted.
Wednesday
24 March
We drove
over to the hospital about 10, and sat with mum a while. She is so tired,
speaking is difficult, but she tries hard when anyone is there. The less
the person is related to her the more effort she uses to sound normal,
though I'm sure that's not deliberate.
David Malin,
an astronomer friend of hers, came by and took Michael for lunch, which
was kind of him. Mum meditated all morning before we arrived, and sent
us away at noon to meditate some more. She's using visualisation techniques
as well, which she finds really effective, at one stage she had Jedi Knights
blasting the cancer and she says it helps a lot.
God it was
awful leaving her there, wondering if I'd ever hear her speak again, if
she'd be able to move her right hand, do some of the things she likes
doing at least. Are we really doing the right thing?
Louise, Tony
and I went to Barzura, a lovely cafe overlooking Coogee. The sea sparkled
blue and a light breeze played over us, the food and wine were great,
and we sat there out of our minds with anxiety. I couldn't bear it if
she died in surgery. But it would be worse if she came out not being able
to speak ever again, or not move her right side... it's such a huge gamble.
I love my
mum so much, she's the kind of mum who you can be best friends with. This
is the most cruel joke ever, I keep thinking about the total arseholes
who live healthy lives until the age of 90, how unfair this all seems.
But of course life isn't fair, I know that. It just sucks, a lot.
Tony and
I went home, first dropping Louise in town where she went to the museum.
We slept most of the afternoon, exhausted from worry. Around 7 we decided
to go in and keep Michael company. We didn't realise but David had actually
dropped him back there at 3 and went away, so Michael had been on his
own all that time. He called us just before we left and couldn't remember
that we hadn't been at lunch with him.
Just as we
arrived, mum was brought down to ICU from surgery and we were allowed
to see her straight away. The surgery lasted five hours.
There she
was, looking yellow with all kinds of tubes, she blinked, Ah, she's alive.
Her eyes were poppy - apparently brain surgery makes everything swell
and the only way out for the pressure is via the eyes. But I
could see she was still in there.
Then her
right arm moved as she waved her hand to me in greeting. She was so worried
about being paralysed on the right side, the relief flooded over me like
a golden bath. Then she said Hello.
I have never
heard a sweeter sound.
We have been
so lucky, it was a small chance of this outcome.
Thursday
25 March
This morning
we went down to the hospital to find mum already back in her room, still
with a drip attached but sitting up and talking.
It's incredible,
she had a tumour the size of a cricket ball removed from her brain and
she's sitting up and talking.
She's very
tired, somewhat incoherent, but apparently that may be the swelling from
the injury and it may go by the end of next week.
She told
us that before the operation she called a fairy to come and help her.
She talked about this fairy (Tinklebell) as though she was real. It emerged
eventually that she had used a creative visualisation technique. She had
decided the Jedi Knights were too aggressive, so she wanted someone gentle,
and this fairy was in a poem she remembered from childhood in a NZ poetry
book. She could remember something about the fairy renting out her house,
with a sign that said "To let, no spiders..." but that was all
she could remember.
This all
sounds coherent the way I've put it here, but this morning it wasn't,
I only pieced it together later. What she said was, "Tinklebell came,
he put kossamer cold round thing...no spiders." What she meant was,
Tinklebell came, and she put gold gossamer around my tumour."
She also
wove the gossamer around the base of her neck to prevent damage to her
spinal cord and right side. "She did a good job, didn't she?"
It really
sounded as though she was talking about a real fairy and it broke my heart,
but later I realised she was just trying to explain about the visualisation.
We waited
around for hours hoping to catch the surgeon, who said he'd be there "this
morning", but after lunch we left, as mum was tired and wanted to
sleep. I wrote a list of questions for the surgeon in case mum was alone
when he came.
The surgeon
came at 6 this evening, and mum used the list, she was in fact by herself.
Luckily Debbie, an old student of mum's came immediately afterwards and
wrote down what he'd said for her. He told her the operation had gone
very well, he'd got 98% of the tumour, with no complications.
He said that
the Texas clinic has been going 10 years and they haven't produced any
results yet, so he didn't recommend it.
He said that
she can fly immediately if she wants to, and that she should go onto an
antioxidant diet.
Michael stayed
over at the hospital again tonight.
Friday
26 March
Tony went
back to work this morning, and Louise went to have an Alexander lesson
in the city, because we thought mum would be released at 1pm or so, but
she rang at 9.30 and said that Mark would be here soon and she could go
after that. "I dont' know who Mark is."
I said he
was probably one of the other neurosurgeons at the hospital, Dr Teo's
colleague, and she said, Oh, I didn't think of that. She complained bitterly
about the food, she'd asked for toast and got cold fruit toast, and they
gave her yoghurt which she hates. Hurry and get me, I'm sick of being
here, she said.
I got straight
into the shower, only to have the phone ring. It was mum, and she told
me the same things all over again. I said, mum I'm going to have a shower
so I can come get you.
I'd finished
my shower and she rang again, to tell me all the same things all over
again.
It's awful...
I'm angry with her for being like this, for not being my incredibly bright
and efficient mum, and then guilty for feeling angry, because she's alive,
and I know all of this is normal but I hate having these feelings anyway.
Bleah.
I drove her
and Michael home, and she went straight to bed.
Saturday
27 March
Reading!
Strangely
today was the day that I started reading again. I had read a third of
The Resurrectionists by Kim Wilkins, which I started on 2 January
or so. Today I read the rest of the book in two hours. I loved it, but
was disappointed with the end. I wanted Maisie to work out her life more
and to battle her grandmother for her Gift back.
Yoohoo, back
on the bicycle.
Mum spent
the day alternately sleeping and talking... talking is still very difficult
though it's a little better than yesterday, she's not mixing up he and
she so much, she can say longer words (on Thursday she couldn't say or
remember meditation or radiotherapy, today she can, just).
But her thinking
is very cloudy, and her emotions raw, she's very prone to mood changes.
Tonight I
took mum, Michael and Louise to the airport. I took Louise to the international
terminal, then mum and Michael to Qantas domestic, I took the bags in
and showed them to the right line, checked they had their etickets, then
left.
We were nearly
home when my mobile rang, apparently they'd asked to get a wheelchair
to the gate, and the Qantas staff found that mum had had recent surgery.
They wouldn't let her fly, apparently it's policy not to allow flying
within ten days of major surgery. It's to do with the pressure in the
aircraft.
So instead
of a two hour flight, the only options were lie to Virgin, and fly anyway;
take a train; or wait seven more days before they can travel. They decided
to go by train, mum had a very strong urge to chill out at home, even
though she had the offer of staying at a lovely weekender at Pearl Beach
for free.
So they took
a train to Melbourne (the direct train had already gone). They'll spend
the day there with Michael's niece, and then go to Adelaide by train tomorrow
night.
Sunday
28 March - "not wonderful daughter day"
The house
is empty today, and I feel terrible saying this but it's an enormous relief.
I can spend hours not thinking about mum, not thinking about cancer, just
being me, spending time with Tony. We slept all morning, it was so nice.
I'm so glad
I was here to help, that the surgery was in a city where mum had a base,
and that I could take the time off work to do it all. My lovely boss again
gave me the time to do this, and flew to Singapore for me to teach the
workshop I was meant to give on my behalf.
I feel very
lucky... this has turned out for the best, I had the best support, from
Tony, who took two days off, drove us around, cooked for everyone, and
was generally a total sweetie; also from my aunt, from my friends, from
work...
But I'm also
glad that I can stop being "The wonderful daughter" full time.
The cracks were starting to show. It's tough because I'm expected to just
hold it all together, and I can't always, and when I can't everyone is
shocked and tends to punish me for it in various ways.
It's the
terrible downside of being a strong confident person, even the way I look
contributes to this.. I'm a large, strongly built person. People think
they can't hurt me, that I will always be strong, that I can cope with
everything, that I will just be a rock. Mostly that's right, but sometimes
it just fucking isn't. In my family, me being weak in times of crisis
just isn't really allowed. Or at least I feel that it isn't.
Sometimes
people are very surprised when I'm terribly hurt by something, and cry
or show my hurt feelings. I mean, come on. Everyone can be hurt. Everyone
can feel they can't cope.
There was
one lovely moment in the hospital when my aunt saw my strained face and
rubbed my back, and I felt for a minute that it might be okay to feel
weak or to not be strong for everyone. It was a good feeling, but it was
over in a second and didn't come back again.
So there
was a moment yesterday when I cracked, and it was ugly for a minute. The
reaction I got from Michael really upset me: You're 42 years old, you
should know better than this, pull yourself together. Fuck it, he's 71
years old, he should know better too... it totally totally sucks.
So I hereby
officially own the right to sometimes be upset, to be weak, to not cope,
and to fuck up, to need to be taken care of.
So there.
Silliness
again
This evening
I went to the movies with Chris, Zara and Wendy, we saw Girl with the
Pearl Earring. What a tiny little plot (servant girl poses for picture
painted by Vermeer; wife doesn't understand him; sublimated sex), but
it was enjoyable anyway. The movie was all about looking and being gazed
upon, so luckily there was Colin Frith for the girls and Scarlett Johanssen
for the boys to look at, and it was sumptously photographed.
We went out
for pasta afterwards and made lots of stupid jokes, then walked back to
my house in the balmy evening air.
Lots of fun,
total relief.
I was most
chuffed when we were discussing what to wear to the Masquerade at Conflux
next month - the suggestion was that I go as Venus, from that painting
where she's in the half shell. Though my hair isn't really long enough
to cover the strategic parts, so I will have to decline.
Writing
I'm still
working on Kiss of Death, and I'm finding the going is tough. I
can spend an hour at the computer and produce no more than a paragraph.
Still, at
least I'm writing, and like reading I am confident that the flow will
return.
I've kept
up my Clarion pattern of starting at around 9-10pm and going until the
wee hours, 1-2am, though I can't keep this up or my work will suffer.
Late Tuesday
My mum called
today and she sounds so much more herself. Her speech is better and her
thinking far clearer. I am so relieved... she will have so much more quality
of life, and so will everyone who loves her.
Had a chat
to Sarah on the phone today, and realised how much I MISS everyone that
I don't see, all my Drip Tray mates live in Melbourne, dammit. The lovely
Sarah gave me a virtual phone hug, and it was great.
I'll see
almost everyone at Conflux,
which is only a few weeks off, and I can't wait. If you're coming to conflux,
pay now, I mean right now, because the price goes up on Thursday.
Wednesday
31 March 2004
If you missed
yesterday's post, check it out because it covers over
a week.
Oh my,
I feel good for once
Today I woke
up and felt great. It is worth mentioning because it's the first time
since the day I found out about Mum's illness at the beginning of March.
She's better; I have my notebook back; I'm reading again; I'm writing
(however painfully); the sun is shining; and I have a half-day per week
to write in, and that's today.
Big smile
for me today. Found myself singing a Haydn string quartet as I made coffee
this morning. Good sign.
Noooooooo.....
Cool....
the masquerade at Conflux is a retro dancing theme. Though I'm a bit nervous
someone will wear a John Travolta white disco suit. Pleeeeaaaase no.
Broadband..
yay!
We're getting
broadband cable put in. It's going onto Tony's computer, and then I have
to network it to my laptop so I get it too. Yeehar!
I'm off to
Canberra tonight for a couple of days, to teach a course on writing for
the web, so no posts for a bit. I still don't have Dreamweaver installed
on my laptop at home since the Great Hard Drive Meltdown of a few weeks
ago.
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