Tuesday, May 31, 2005

tamoxifen: not only is it really, really good for women in my position to take it for FIVE YEARS, it's really, really bad to take it while pregnant. they don't know exactly what fx it might have, but a "DES-like" syndrome is one possibility. I'll be 44 before I can stop taking Tamoxifen.

one day I'll have to face up to the fact that I can't get pregnant again. if I'm very lucky, I might get another baby through some other path. but the risk of pregnancy (meaning stopping treatment) is too great. A. needs his mum.

as if the birth notices in this morning's paper weren't enough, the stupid ABC decides to run a piece on "welcoming the new baby" in kids' hour straight after Playschool.

yeah I'm lucky to have a kid at all. now shut up.

Friday, May 27, 2005

A. cried when he went to childcare again today, even though dh took him in while I hid in the car.

when I picked him up, he was sitting in a corner playing alone. he cried just a bit when he saw me. one of the staff told me he laughed when they were doing puzzles today - a bit of a surprise to me as he laughs at home all the time, but apparently not at care. so maybe he isn't as happy there as I thought.

I picked him up as soon as I could after an afternoon rest - I could have done more work, or read, but I wanted a bit of baby time. and then I felt guilty for treating "baby time" as an option beside those other things.

anyway, tonight, sick or not, I'm going to the movies with some girlfriends. you have to make the effort sometimes.

feeling sorry for myself post: stomach cramps, headache and general unwellness, but still I dragged myself in for my first appt with the radiation oncologist. luckily I asked dh to come with me at the last minute. because the whole thing was a bit of a lose.

they want to irradiate my neck as well as chest wall. this means visible burning, blistering etc and probably redness later in life. I had hoped it would be confined to an area that I can hide. the lymph glands in my neck can't be operated on, and are just as likely as the ones they took out to have cancer in them - I hadn't really realised that. that means they are really quite likely to be - infected? I guess that's not the word? - and all this will only give me a 2-3 % greater chance of survival overall, though greatly reducing the chance of a local recurrence. in other words, the real risk is in the rest of my body. and the chemo has been delayed and downgraded due to my white blood cells. and the fact that I have no new lumps means nada while I'm in chemo. the waiting period starts after chemo. and of course he referred to me having hopefully five years of Tamoxifen, which is the real bar to another baby.

most of all, I find it hard to go through the blow-by-blow of lump size, nodes, surgery and yet another examination of my scar. it all just brings to the fore something I'd rather push aside.

oh, and NO SWIMMING for the whole period of radio plus a few weeks, unless I can get down to the saltwater pool at St Kilda. that really sucks. and reconstruction? not for a YEAR, he says. I had my heart set on doing it before I was 40 (39 tomorrow). and of course various small risks associated with radio - bone thinning, new cancers, 5% of my lung function will be gone forever. it seems like a lot of trouble for a small benefit, but I guess I'll do it - I couldn't live with myself if I didn't and we got a local recurrence.

I have an appointment for another CAT scan in a few weeks, followed by six weeks of treatment that will make me tired and rundown, starting early July. oh joy.

Wednesday, May 25, 2005

warning: hugely immoderate proud parent post.

dh is out for the night. A. and I spent 15 minutes on the couch, reading books and looking at pictures of people we know. just after 6.30, I took him into his bedroom and put him in his sleeping bag. and he lay there, with a mouthful of dummy, a teddy under each arm, looked up at me and started laughing gently. and I don't think I could be happier than leaning over him, face to face, laughing with him. about what? life, I guess. it's pretty good.

Monday, May 23, 2005

what I could really do without right now: national palliative care week. I JUST DON'T WANT TO THINK ABOUT IT, OK??

who I'm envying: Kylie. no, really. wish my surgeon could have fronted the press and declared my op a complete success.

dreaming of: what I saw in the mirror this afternoon as A played with his reflection. two babies.

Wednesday, May 18, 2005

my mother tells me it's good that I have some work, it will keep my brain going.

I say I'm using it anyway (thinking of my writing, my blog, my reading)

she says: "when I had (small) kids, I thought about cabbages."

Tuesday, May 17, 2005

something else the singing budgie and I now have in common (we share a birthdate; she's two years younger than me.) reading between the lines, I'd say it's a tiny lump and she'll be fine. not that that makes it any more fun for her to hear the line "it is cancer".

I've just done two hours of work hiding up here in the study while the sitter plays with A. in the other room. quite a strange feeling, hiding from my own son.

so I'm earning money again, albeit a tenth of what dh does, and with a fairly nondemanding piece of work. another venture I have is starting to look like it might even pay for itself (long story). the real world will drag me back in, I suppose, and in a funny way maybe I'll look back at this time when no one expected anything of me as a luxury.

Friday, May 13, 2005

I'm a paddidle, apparently.

have been searching for breast cancer blogs that don't mention recurrences. depressingly few. otoh, my six-month checkup (breast area only) yesterday was fine, followed by the fourth-from-last chemotherapy session. my low white cells are dragging this out; it will be at least ten months from initial surgery to the finish of radiotherapy. and don't ask what it's all costing. I won't be able to do reconstruction until next year, I'm told, which is a bummer as I'd really hoped to get it done by the one-year anniversary.

baby sick still. me all chemoed out. a tough day.

Danae, who is currently shooting up hormones and will, in due course, be the bearer of grrl's news. just for reference.

Wednesday, May 11, 2005

no way do I have time to read and report properly on the Law Reform Commission's discussion paper on access to ART

it seems to be giving with one hand - removing the marriage requirement and allowing same-sex couples in, f'rinstance - and taking with the other - bringing in rules that would prevent "unsuitable" people getting access to ART.

Monday, May 09, 2005

as my erstwhile employer's opinion editor says this was "good" but they'd run enough on IVF lately, I may as well air it here.

In an article on this page last Friday, Dr Amin Abboud is certain to
have made many infertile couples' blood boil – including, I admit,
mine, with this advice – "They just needed to relax and do what is
naturally necessary to conceive."
"Just relax" is the most common, and most infuriating, piece of advice
suffered by infertile people, and in most cases, as useless as it
He suggests that IVF in Australia needs a review going beyond the
financially-driven reforms mooted, then sent off to an expert panel,
by the Federal Government recently.
Dr Abboud says that one third of infertile couples whose condition is
"unexplained" would become pregnant without IVF if they pursued "other
treatment options."
But can he tell us which third? And does he really expect women in
their late thirties who have been waiting years on the "natural"
platform to pass up the IVF train when it arrives, and agree to wait
another couple of years, by which time their chances of motherhood
will have shrunk even further?
He doesn't specify those other treatment options, but they would
certainly include fertility drugs, with associated risks of multiple
births, and alternative treatments such as acupuncture, lifestyle
changes and herbal or naturopathic assistance – most of which can be
pursued at the same time as IVF treatment.
Technically speaking, when I underwent IVF 2 ½ years ago, I was in
that third of patients whose infertility was "unexplained", not having
fallen pregnant after a year of carefully timed natural attempts. But
the fact that two attempts had managed to get not even a drop of fluid
to traverse my fallopian tubes gave me a clue which way I should jump,
and our success on the second embryo transfer, shows that for many
"unexplained" patients, IVF is a shortcut well worth risking.
Dr Abboud suggests that the "general pattern" of IVF treatment in
Australia is similar to the "vicious" and unregulated competition in
the United States. I don't know what kind of Australian IVF doctors
he's met, but the fine, caring and extremely cautious medical staff
who worked with me during my treatment showed no signs of any of the
sins of the US system, most particularly the push to transfer
excessive numbers of embryos, risking high order multiple births.
As an aside, if IVF in Australia were to be restricted by number of
cycles, I believe many would-be parents would be more likely to risk
twins and even triplets to get the most out of their allocated
chances, resulting in more premature births, among the many problems
with multiple births.
Dr Abboud quotes a Sydney IVF clinic director as saying that in the
future, sex will be for fun and IVF will be for babies. He – Dr Abboud
- hints that issues such as sex selection will help push this supposed
Dr Abboud has clearly never undergone weeks of hormonal pummelling of
his body, mind and emotions, weeks of injections, followed by painful
egg pickup and invasive embryo transfer procedures. Any woman who
would choose IVF over the fun path, even or particularly to choose a
child's gender is, I believe, in need of counselling. It hurts, it's
unpleasant and no one in their right mind would choose it if they
didn't need to.
His called-for "scientific review" would presumably come up with
suggestions like "relax and wait" – I can feel my blood warming up
In his article, Dr Abboud pointed out that the Access Infertility
Network, an advocate of easy access to IVF, is funded by the IVF
industry. Fair enough. But before taking Dr Abboud's suggestions on
board, we should look at his background. In 2002 he was quoted on the
Australian Catholic Weekly's web site as saying "good science is
ethical science" as he criticised stem cell research.
In 2003, he was acknowledged as helping Reverend the Hon. Dr Gordon
Moyes of the NSW Parliament write a speech opposing embryonic stem
cell research, and he has made his stand against that research clear
in numerous other forums. Would it be cynical of me to detect the
anti-IVF bias that often accompanies opposition to non-reproductive
uses of embryos?
In a submission to a federal senate inquiry on human cloning – and I'm
not going into that issue here – Dr Abboud said: "Inadequate research
has been done on the development of the human when conceived and born
out of what has been traditionally understood as family dynamics."
Would that be the good old missionary position, Dr Abboud?

what does Martha Stewart have to say about removing melted plastic bibs from clothes dryers?

there's been some talk about last posts lately. I'm not writing one of those. But I've been thinking...

this is a draft. I want to work it up into something that makes sense. it probably doesn't right now. but when I feel for the core of what I'm trying to mean, I feel comforted.


When the gods were angry with us, they’d exclaim “Mere mortal! How dare you?”

But we do. We know we are going to die. We are mere mortals, those for whom our very existence is an issue, (1) and we do it anyway.

And this (I wrote in the dark in the middle of another sleepless night) is the meaning of life (which I abbreviated as 42). To do, knowing that it will end.

Which is why sex and death are related. Sex is pointless in the face of death. It can’t last. But we do it anyway. Sex procreates, defies and overcomes death. The sexual urge is reproductive, death-defying, though as living humans we have reinterpreted it so many ways.

So the meaning of life is to do what we are. You are a poet, a painter, a cabinet maker, a grower of vegetables. You won’t last.

Which is why Douglas Adams’ writers’ block was so ironic. His best joke was about the meaning of life, but he couldn’t write – and that was what he was for.

And it’s why I’m writing now. I am doing what I am, being a writer. It’s what I am and I will live my life, writer and mother, though I am going to die, quite possibly very soon, too young. I’m a mere mortal, I face that fact, and I dare.

I wonder about postnatal depression. About making life, on the face of it the greatest victory over death, but then having to deal with the sheer banality of the act. Giving birth is the ultimate in life – and that’s all there is? (2)

In the dark, I think of songs about life. The Violent Femmes: “He said yes to life for all his life, then one day he said No. I’ve gotta go…”

The meaning of life is to say yes. Which is probably why Joyce’s Ulysses ends with that one word.

Yes I am, yes I will, yes I do, turning one’s back on the fact of death, denying and defying in full knowledge – that is what life is for.

So I have an argument with suicide (apart maybe from those who suffer deeply and irreparably, and I know that’s a relative matter).

In a way, I started learning to live when I met my first freaks, new friends who weren’t standard-issue, but who embraced what they were, chose to live what they were – gay, musicians, artists and other lost, searching souls. That’s when I began to see the project of life as being self-fulfilment; not selfish hedonism, but living out what might once have been called one’s fate; looking into oneself, seeing the truth and honouring it.

And all I can do now, in the face of death, is to keep saying yes, keep passing the open windows(3), keep on daring to be even though I’m a mere mortal.

(2) Peggy Lee?
(3) Garp?

poor little A. still has the stomach bug, as he didn't get super antibiotics as I did. which meant he pooed and cried several times last night, and had a temperature, and screamed the house down this morning. he's now napping peacefully. if it recurs, I'm demanding antibiotics for him from the dr, if only to ensure I don't get the bug again once my course finishes. the midnight thought after a bleary nappy change/panadol administration/cuddle: the reason dh and I have conflict when A. is in a crisis, and the reason I get so annoyed with him is this: I am a professional now, I know how to drive A. dh is an amateur, messing about, reading Panadol labels while I hold a crying, squirming bub on my full bladder. must be more patient with him. no man is perfect.

Sunday, May 08, 2005

what I got for Mothers' Day: 15 minutes of screaming first up, woken up from the afternoon nap and a slightly sick, off-colour baby all day. c'est la vie.

he's down for a third nap (as is his dad) and I have a few minutes to try to catch up on my blog, my reading (gotta read getupgrrl every day as she's not publishing archives right now) and my "other" writing. ah, what would Virginia Woolf say?

lessee, cancer issues: conversations I imagine #1: when someone challenges me for using the "disabled" private change room at the pool and I explain to them that I'm using it so as not to shock other patrons with my disfigured chest, and that they should mind their own business in future. but no one ever does challenge me. either a) everyone is just getting on with their lives or b) people are more considerate than I realise. did I mention how many topless sunbathers there were in Thailand? I saw more breasts in public than I've ever seen in my life. not all perfect, mind you, not at all, some great, some old and floppy and fat. but all in pairs.

conversation #2: walking up to a smoker on the street, a feckless young gal with great skin and a fag in her hand, and explaining to her how chemotherapy feels, and how the dr at the hospital on Friday (I had a stomach bug and had to go in for blood tests, a drip, etc) pushed the needle right through my vein and out the other side.

and what the notes below are about: this article, by a religious anti-IVF, anti-female reproductive control idjut masquerading as a doctor and ethicist. I can pick them a mile off now. it's (free) subscription-only, so I'll give you a sample, much as I'm loathe to reproduce such rubbish:

"A study by David Dunson and his colleagues published in the Journal of Obstetrics and Gynaecology in 2004 concluded that sterility did not increase with age. The authors found that even the most difficult demographic, the 35 to 39 age group, could still conceive within a two-year period in nine out of 10 cases. They just needed to relax and do what is naturally necessary to conceive."

yep, RELAX!!! aargh.

and finally, one thing I did in Thailand. we visited the Big Buddha on Koh Samui, where for 20 baht you can buy a brick for their temple and put your names on it. I put on my name, dh's, A's and a tiny dot. for the baby who may or may not be, but is still just a tiny dot right now.

(I also had aches in my armpits and a rare cry over the small matter of what's left of my right breast. but basically the holiday was not about sickness and very much about food, swimming and playing on the beach with A.)

Saturday, May 07, 2005

and the submission that gives his game away. note bettina arndt reference!

the speech in question

Thursday, May 05, 2005

ah, this is not the way to get readers. but for those who came here via Cancer, Baby, via Getupgrrl - and there's enough there to rename the Slashdot Effect the Grrl Effect - hi. it's a little crowded in here. I usually only entertain a visitor or 2 at a time.

I know how annoying it is to try to read back through archives to find out why the hell you're at a site anyway. so this is me (said the Phantom): ttc through 2002, IVF, baby born late 2003, breast cancer diagnosed a year later, surgery, yada yada, currently slogging through chemotherapy with the lowest white blood cell counts ever seen in a living human (yes, I failed again, maybe chemo next week). this has all put a hitch in my plans for ttc #2, I can tell you.

and like Bomb in My Belly, I am not strong. I am not giving thanks for cancer. I am, though, a bit humbled by what I see in the other ttc/cancer/both blogs I surf around. Other than that, I'm just getting on with it and trying not to let bad shit make my life suck. a bit like the amazing Sabine Dardenne, who is my new heroine.

now go back and give Cancer, Baby some love.

great. I finally email Getupgrrl because I can't get at the posts I missed while I was away, and in my attempts to be clever and impress the coolest ttc blogger on the blog, I misspelled "competitive", as in Competitive (aka Competive) Boy. now she'll think I'm stupid and snub me in the lunchroom and I won't get to be a cheerleader and no one will dance with me at the prom. damn. oh wait, that already happened 21 years ago.

can I just say that this whole picking on IVF thing that the Health Minister is up to stinks of anti-female sentiment? that it's all about control of fertility? that infertility is not a fucking lifestyle choice, it's an affliction? and that yes I know Australia has the best damn IVF funding around. and that it should stay that way?

oh shit. I feel ill. surfed over to see what Getupgrrl was up to and it turns out she's also a reader of Cancer, Baby. and the news there is not good. shit. and yes, part of the ache in my gut is fear. but part is empathy. if infertility is unfair, cancer is just plain senseless.

fabulous holiday. exhausting flights. baby now can say "plane" and has swum in the warm Thai ocean a number of times. yawn. he's napping now, which is a sign that the sleep realignment hasn't been entirely successful yet. did some interesting thinking about Life while we were away, but right now I'm flat out trying to organise myself to do some actual freelance work which has fallen in my lap and is too good to be passed up. will probably put A. in a second day of care, with babysitters in the few weeks before that becomes available.

back into chemo tonight. damn. I nearly managed to forget about all that.

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