by Alinta Thornton

About writing, breast cancer, malignant glioblastomas and other stuff.

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August 2004

Monday 2 August 2004

Holidays are for...

Having fun. Relaxing. Sigh.

Tony and I jetted off to Palm Cove in Queensland's Tropical North last Wednesday. The flight up was damn uncomfortable, pushing my right side against the window seemed a better option than pushing it against Tony and having us both be worried about bumping my wound.

However it's only three hours, and after that we stepped into lux-world. The Angsana Spa is very glamorous, with its own secluded beach. We had a two bedroom suite overlooking the ocean (only because the 1-bedroom ones were all taken and no way am I going to spend a week by the beach unable to see the beach). It turned out to be a good choice since the pool was being retiled, and there was inevitably some noise from that.

On our balcony though you could mainly hear birds, waves and the happy sounds of children making sandcastles so it was all good.

We didn't do a lot, I ventured out twice to walk the length of the beach, both times it was too much for me and I decided not to do it again. I bought gorgeous shoes lined with little shells, and Tony bought me a gorgeous opal necklace which I will treasure as a memento of the holiday.

The food at the Angsana was fabulous, especially breakfast. Oh how nice it would be to be able to lift a phone any day at home and say, I'd like pancakes, and they'd just magically appear. I think I really was a Queen in a past life, hehe.

For some odd reason my internet connection didn't work there although Tony's did.

We spent the time swimming (the weather was mostly sunny, and 27C), lounging on the beach in cane chairs, reading, sleeping, eating.. that kind of thing. Also had a lovely massage at the spa. Mmmm.

On the way back Tony splurged on a stretch limo to the airport. It's actually not as expensive as you'd think, $100 where a taxi would probably be $50 anyway. It was very cool and we tried hard to look nonchalant. I drank water from one of the crystal glasses and enjoyed the smooth ride.

Mum was in Queensland too during this time on an extended holiday, but unfortunately the timing didn't work out and we couldn't meet up. She had a great time relaxing and visiting friends down the coast, travelling home by train.

Writing

I did some writing, doing a redraft of Kakaju, so that was cool. Consensual declared my succubus story not consensual enough and rejected it, though they were nice enough to say it's erotic and well written. Pout. God knows where I can sell the damn thing, and boy do I wish I'd had the obvious thought that succubi by definition are not consensual.

The story is not non-consensual enough to sell to a BDSM market, and probably will fall through the cracks between "just give us something sexy to read" markets and "gives us a story and it can contain sex if it drives the story forward" markets. Hmm.

Being psyched out

I am joining a support group for women with breast cancer, starting next week, so that will be interesting. It starts three days after my first chemo (which happens on Monday, gulp), so I'm not sure how I'll be feeling. Still it will be good to be with people who don't put pressure on me to be brave.

I don't know, do I create this pressure myself? Perhaps partially. But I definitely feel I'm supposed to be positive, to be strong. Sometimes I just can't be stuffed with it, I know I get snappy with people at times because I'm feeling expected to be normal. Sometimes I love talking about something else, like writing, or movies, or whatever, and for a while forget what's happening.

Other times I listen a conversation and want to scream, what does any of this matter? Of course that's stupid, life does matter. I just don't quite feel part of it sometimes.

Ouch

Anyway it's so fantastic to not have the drain there, and today I'm even without dressings since it's all closed up. However I still have a huge long wound which hurts. I find it hard to use my stomach muscles much so standing is hard, I tend to use my knees for that and that makes my knees and calves ache. My right arm is hurting, I'm doing all these exercises to stretch it out and apparently doing "better than usual" according to my doctor.

Chemo

On Friday I go to have a port inserted so that I can avoid the fortnightly dig for my crap little veins. This involves another operation which is a day visit, and local anaesthetic thank god. The doctor prodded me looking for a firm surface to put the port into, so he said, making me laugh. A firm surface? On MY body? Hehe. Finally he prodded my biceps and did a doubletake to find that they are strong and prominent. He couldn't believe how firm they were, all that violin playing I guess, even after all these years the muscles don't forget.

Then on Monday I begin with the toxic chemicals. I can hardly wait.

Review of Orb 6

Conversations with Eternity, Geoffrey Maloney: your basic drug story, only with immortality. This is not a new idea, but it's nicely done.

Father of Democracy, Mina Athanasopoulos: I couldn't concentrate on this story. Perhaps it was just the crap mood I was in that day? Anyway I didn't reach the end so I can't in all fairness comment.

The R Quotient, Nathan Burrage: I have seen this before (in Thorbies Writing Group), and much enjoyed the rewrite. Beautifully structured with a great payoff. The transitions between scenes nicely handled, one of the standouts in this anthology.

Home by the Sea, Cat Sparks: I've seen this story several times before (in Thorbies Writing Group), which especially in this case possibly renders me an unreliable reviewer. Having said that, I like the story and find it clear and well structured.

The Crystal Battery, James Cain: some evocative writing in this story, I particularly enjoy the similes, metaphors and wild chases of fancy in the writing. "A spume of shaking fists and arms". "The word was scorched sand on his tongue." Lovely stuff. But I've read too many evil corporation/corporate baddy and uploading-the-soul-into-a-database stories to make this a standout.

Tales of Nireym, Lee Battersby: this one gripped me. Maybe I'm a sucker for feminist stories, but I liked the handling of this one. It has a rich, well thought out world and a mythical feel that I enjoyed. The end gave me goosebumps. A standout.

Retail Therapy, Chuck McKenzie: this reminds me of Paul Haines' They Say It's Other People in Agog, in its theme (see below). In both stories the person's particular hell is well realised so that I could really feel their pain. Ewwwwww. In the nicest way.

Tripping over the Light Fantastic, Kim Westwood: the writing is beautiful, evocative, but I feel quite stupid: I just didn't get it. Something to do with vampires. Later: Okay, I get it now. Shudder. Guess I prefer my menace just a little easier to spot.

Cinnamon Gate, Deborah Biancotti: strong writing and an unusual theme make this a standout for me.

The Healing Soup of Chu-Chou Village, Alinta Thornton: I include this only for completeness, naturally I can't review my own story.

The Superb Grace of the Steel Beam, the Delicacy of Reinforced Concrete, Andrew Macrae: a rewrite of a Clarion story, and much tighter now. This is a very cool idea, at least I haven't read one like it before. The realisation is well structured but the emotional tone is too cool for me to get completely engaged.

Got Change? Rob Hood: again have seen this before (in Thorbies Writing Group). I like it, it reminds me a little of Asimov's stories that take place in a gentleman's club. Old fashioned but nicely done with a neat twist.

Telecide, Darren Goossens: just contemplate this sentence: "There was no need for blenders that could quote Heidegger, or power drills that composed haiku." A TV prone to self doubt and low self esteem? Cool and funny, and just a little evil.

Review of Agog Smashing Stories

Regolith, Rob Hood: cool end, though the middle a little too long. Loved the description of the weird stuff in the bad guy's lair.

Warchalking, Claire McKenna and Paul Haines: I liked this much better than the early draft I saw at Clarion - way tighter. The idea is good, but the detail and atmosphere make the story.

Humosity, Jeremy Shaw: A wild idea and its execution is chillingly effective.

Number 3 Raw Place, Deborah Biancotti: As always I enjoy Deb's sinewy writing and evocative atmosphere, but I have to admit I just didn't get this. I read it twice, and still didn't get it.

Gaslight a Go-go, Dirk Flinthart: the writing in this swept me along so that I didn't remember how much I loathe Jack the Ripper stories. Gotta hand it to ya, Dirk! A little long for its subject matter in my view.

The Cascade, Sean McMullen: I'm a bit over longing-for-Mars stories. The terrorist aspect didn't thrill me either. Naturally though it's well written enough so I read and enjoyed it.

Seven Wives, Bryn Sparks: an unusual take on cloning. I loved its execution. It's one of the standout stories for me because the emotions in this are so evocative.

Where Did You Sleep Last Night?, Justine Larbalestier: this one I loved. It's not especially original but it's a new take on an old idea (earth girl sleeps with alien). The writing sings and it's emotionally resonant. The standout story for me in this collection.

Temenos, Kim Westwood: A redraft of a Clarion story, and far clearer and tighter in this final version. I like the story, especially since I can now understand it! It's a very cool idea and Kim slings words together so beautifully. "Furled thick around prayer poles, blinking a radioactive semaphore atop the piled om mani stones...". Sigh.

Maelstrom, Martin Livings: Good vs evil on a huge scale, set in atmospheric Prague, complete with vortexes and dungeons, even an Alien-in-the-stomach scene. An enjoyable romp.

They Say Its Other People, Paul Haines: Hell is other people a la Sartres. This is a typically Haines evil, nasty story and I loved it. Eewwwwww. One of the standout stories for me.

Inside the Mountain, Grace Dugan: this is beautiful, in just six pages it covers myth vs technology and unrequited love and swings you easily through it all.

R, Ben Peek: a neat exploration of censorship but a little too obvious to support its length, in my view.

Gin Jackson, Neophyte Ranger, Marianne de Pierres: I liked the Australianness of this story. The heroine seemed a little cliched, but the dreamtime twist was cool. The detail of the worldbuilding is well realised.

The Border, Richard Harland: Oohh, I like this one. A bit Ray Bradbury, one of my all time favourite writers, and he totally pulled it off. I do have a penchant for the macabre so I'm probably biased.

Water Babies, Simon Brown: oh cool, not all demons in Australia originate here! I like it. Well drawn characters, a gripping climax: a satisfying read. Perhaps a leeetle too long, too much domestic detail.

Weavers of the Twilight, Louise Katz: I like the way she drops in the details of this world and makes you believe them for a moment, preposterous though they are on closer examination. "We've experimented with imaginal flight, using contemporary psychotronic tehcniques allied with certain shamanic tricks we picked up from the Siberians." Vagueness abounds, and yet it has a certain lyrical appeal.

Endure, Trent Jamieson: Just couldn't get my head around this story, though I suspect it is mighty clever and wonderful. Probably says more about me than the story.

Come to Daddy, Brendan Duffy: the plot in this story is not new. But Brendan has such a passionate way with world building, character and emotions, as well as sentences that dance with energy, that I just didn't care.

Porn Again, Iani Triffit: cute, I guess, though if I never again read a story involving cockroaches that would be fine by me.

Tuesday 3 August 2004

Back to work

Went into the office today for the first time since mid-June. It was good to be back, not at all strange the way it usually is, especially after such a long time away. I was happy to plunge straight into some information architecture work, as my brain seems to be on even if my body isn't.

Almost everyone in the office has or has just had flu so I am desperately hoping I don't catch it.

A pox on viruses

Yet again I have a virus on my laptop and I am SO over it. Internet Epxlorer, MSN, Yahoo Messenger, and at one stage Dreamweaver and Outlook have stopped working (though the last two are back now). I have installed Firefox browser which does work, hallelujah, and it is so much faster than IE I think I'll stay with it.

It's a long and dull tale so I'll skip the details, suffice to say I think (gulp) I may have to reinstall Windows 2000. Erk. This virus/spyware tsunami has GOT TO STOP. I don't just mean me either, what a colossal waste of human energy.

Knockbacks

I had two rejections in three days this week, have already sent out one of the stories again, and not sure where to send the other yet. I don't take the rejections personally, you can't.. every writer has dozens of them. None of my stories have taken more than four rejections before getting published, and many have been accepted first go, so I have nothing to complain about.

Thursday 5 August 2004

How a dishwasher really works

Brendan sent this around today, I have no idea where it originates from but I just can't resist putting it on here.

Ever wondered how a dishwasher works when you close that door? Wonder no more. Hehe.

Norma Khouri

I am fascinated by the outrage around Norma Khouri's lies. If you've been out of the solar system for a few weeks here's the deal: she wrote a book purporting to be a true story about an honour killing in Jordan, and it turns out she made it up. (Oh my God, a book that contains stuff that isn't true, what is the world coming to).

She does seem to be a bit of a habitual liar, with debt problems that made her disappear from her family's life, etc. And no doubt the book would not have sold as well if it were supposed to be fiction. I haven't read it but by all accounts as fiction it doesn't cut the mustard.

However the anger it's generated seems out of proportion. Why? Millions of people read and enjoyed the book. On the other hand, she has tapped into a deep vein of anti-Muslim feeling to sell those copies. If the story were about a woman getting killed by her husband in, say, Manchester, or Oslo, I doubt whether she'd have even got it into print.

On balance I think she's exploited a nasty, insidious type of racism, and told a gigantic lie for the most selfish of reasons (fame and fortune, folks). I can't help feeling a sneaking admiration for the scale of her activities though. What does that say about me? Please don't tell me. I'm guessing I don't want to hear the answer.

Fame! Clarionborgs are tops!

This just in.

The August issue of Locus magazine announces Karen Miller's upcoming fantasy duology "Kingmaker, KingBreaker" sale to HarperCollins.

On p56 Gary K Wolfe reviews The Year's Best Fantasy: "Brendan Duffy's ingenious but overly complex "Louder Echo", the only tale in the book to reflect the secret/alternative history themes that have been so popular among novelists of late, describes the efforts of an 18th-century scientist involved in the preformation-vs ovism debate to create generations of homunculi that will provide him a glimpse into the future all the way down to Robert Oppenheimer.

On p65 in "New and Notable Books": "Agog! Smashing Stories : an all-new anthology of original stories from down under, third in a series offering an excellent overview of the latest in Australian SF."

Saturday 7 August 2004

Any port in a storm

Yesterday I had this port thing put in. Doesn't sound much does it. Basically they insert a little tube down into a nice fat vein and an opening at the top so they can easily get to my veins for the chemo. I haven't seen the opening yet (there's a dressing on it) so I can't tell you what it's like. I can tell you it feels quite hard and very sore.

I thought, silly me, that since I was having local anaesthetic it would be a quick and simple procedure. But no, it was full on surgery. They gave me some kind of sedative barbiturate, plus some morphine, and local. It didn't knock me around nearly as much as general does, but it's still fairly full on.

Interestingly I was sort of aware during the operation, but it's all got a dreamlike quality now. At least I was able to say gimme a pillow under my legs please, and they did, but even so my back is so sore that I had to get up at 6am this morning, couldn't lie down any more.

So now, oh joy, both arms hurt like buggery. The right one from the lymph node removal and the left from the port. I hope like hell it will stop hurting soon because I can't lie on my left side and I can't lie on my right side and there is NOTHING MORE HORRIBLE at night than being forced to lie on your back in one position all night.

Anyway, at least they won't have to dig for hours each fortnight to find a vein.

Yum

After we left the hospital we went for a coffee at this local joint, it used to be a fruit and veg shop but it's been converted into an ever so hip restaurant/cafe with a grocery shop in it. I went mad in there. Everything costs way more than it should but equally it tastes great.

I bought coffee which we were almost out of (eek!), but also fresh turkish delight, fresh spaghetti, fantastic pancetta, swiss mushrooms that actually taste of something, tomatoes that also taste of tomatoes, and a bottle of preserved necatarines, with clotted cream. The nectarines were 5 or 6 bucks, but they were so delicious it was worth it.

You can guess what we had for dinner: pasta with pancetta, mushrooms and tomato salad, and nectarines for desert. Yum.

Is this good or not?

I have lost about 11kg in the last three or four months, most of it in the last six weeks. I have been trying to eat more healthily even before I got the diagnosis because I didn't feel energetic as usual, and this has made me lose weight. I don't normally weigh myself, because it tends to set me off on a diet obsession pathway that I don't much like. But I have been going into a pharmacy near work and getting a printed slip every few weeks to see what's happening.

It's a low key thing, you still see me eating hot chips or whatever from time to time, but I'm gobbling up vegies and fruit so much I don't have room for a lot of the naughty stuff.

So is this a good thing? Well yes of course, I'd like to be smaller. But.. Tony voiced my fear yesterday, is it a symptom of cancer? I'd like to think not. I want to think it's all gone. But then I remember that my survival chances without the chemo are scarily low (30% or something) so I probably still have some in my body right now.

Not the way you'd choose to lose weight, but I ain't complaining about this particular side effect.

For years, up to about the age of 30, I was body and diet obsessed like the next woman. Extreme crash diets and gym four or five times a week kept my weight down. But each time I stopped a diet, I'd find my weight stabilise again at four or six pounds more than before. Duh, took me years to realise that dieting made me put ON weight in the end. So I stopped dieting, and felt a heap better and more healthy. I just eat what I want to eat, and also found I binged a lot less. Overall my diet got much healthier, my blood pressure went down to a normal level and my cholesterol is now quite low.

This doesn't feel like dieting. I'm just eating a lot of fruit and veg, and avoiding alcohol (to increase antioxidants and reduce toxins), and while that may sound like a diet it isn't to me because I never let myself get hungry or restrict what I eat.

Would be nice if my weight keeps dropping.

Mum's health

Mum is gradually getting worse, I just realised I have been rabbitting on about me and not mentioning her. Don't think she's out of my mind, far from it. She is having trouble with her knees, if she kneels she can't get back up again. Her hands are shaky. Her critical judgement is almost gone.

The other day she announced that because I went to Pearl Beach for a weekend using a house that she had on her Doggy Holiday web site, that's how I found my cancer. I had told her that on that weekend I slept and slept and thought it was unusual, and in her mind that turned into the mechanism for me finding the cancer.

Mum is having all kinds of stuff put in the house, apparently a lot of it is provided free. It's amazing what kinds of services are available when you need them, I'm always saying how much I like living in a country that helps people when they're down, and that I am happy to pay huge amounts of tax for that to happen. But being on the receiving end of it is amazing, the support services that are there are truly fab.

Mum has a hospital bed in her living room, and a support stand for her couch so it's higher and she can get out of it easily, and nurses to come and help her, and railings, and ramps. I don't know how long she has left. She wants Lesley and me to come to her when she's dying, but I don't even know if I can, whether it fits with my treatments.

I can get chemo or radiotherapy in Adelaide, I'm sure that's not a problem, but do I want to compromise my own health by putting myself under that much stress at a time when I need to be the strongest? On the other hand, how can I not be there at a time like that?

I really don't know how I can resolve this. I guess I'll know when the time comes.

Roll on 2005!

I Robot

I haven't yet seen the new movie, but here's a review in Locus which kind of puts me off it: it "perversely imposes upon Asimov's universe the sort of story that his entire robot series, according to Asimov, was designed to contradict and supplant: the clichéd old Frankenstein scenario of humans creating robots who then try to kill or conquer their creators."

Course, I'll have to see it anyway.

Sunday August 8 2004

As recommended...

I am pinching myself, in the nicest possible way. Ellen Datlow's extensive "recommended reading list" for 2003 includes 41 Australian stories from 31 authors, and my story "The Collector" is one of them (published in Borderlands 2).

I'm totally thrilled! (If you are clueless about Ellen, she has won a bazillion awards for editing and is considered one of the top SF/speculative fiction editors in the world. She edits Scifi.com, the Year's Best Fantasy and Horror, etc.)

Two other Clarionborgs made the list, Cat Sparks with "The Birdcage", in Elsewhere, and Paul Haines with "The Feastive Season," NFG volume 1, Issue 2. Rob Hood of Thorbies fame made the list with two stories. Three Australian tutors from Clarion made the list as well, Terry Dowling (with two stories), Jack Dann and Lucy Sussex. Congrats to them and all the others on the list.

And now for some fear and dread

Eek. Chemo tomorrow. I am scared out of my mind and no doubt the reality will be nowhere near as awful. It's all about the unknown.

I had to change the dressing on the port this morning and discovered that a dreamlike event from the operation was in fact real.

I thought I heard the surgeon say damn, that didn't work, we'll have to try again. When I spoke the surgeon later he told me it all went well and they didn't have to dig down to a vein under the clavicle (which can be risky). But I opened the dressing to find two scars, not one. Ah. They missed a vein, it seems. Par for the course with me.

The port itself is entirely under the skin, not poking out at all, so I can't report on its appearance.

Monday August 9 2004

Chemo 101

Just two months since I first found Linda the lump, I had my first chemo. Life prior to finding Linda is a distant memory.

This morning Tony and I trooped into St Vincents, and made our way to the chemo rooms. I had to take some anti nausea medication this morning, the regime is quite complicated, one of this in the morning, one of something else and another thing at night, if you feel nauseous something else again. Thankfully Tony is keeping track of it for me, one less worry for me.

I sat in a big leather wing chair that reclines and has a footrest, facing away from the view of trees and sky. Weird. The nice nurse, a woman called Eddie, explained everything to me and gave me tips on how to manage various side effects.

The port made her face light up. "Oh good," she said. "No problems for you then." She insert a little metal hook into the port first go, and took blood from it, and pronounced it working. Apparently the two scars are normal, one to insert the port itself and one to put the tube down to the vein. I take back what I said about the surgeons yesterday.

My biggest fear about the chemo itself was that it would hurt. It didn't. The worst of it was the generous amounts of bethadine she slathered over me which ended up on my favourite cardigan, which I later had to painstakingly mop up (successfully, you'll be relieved to hear). Eddie pronounced me "Doing fine", by which she meant I wasn't in a cold sweat, shaking with fear or white.

The chemo I get can't be done automatically, so she sat there with two ginormous syringes, one full of red liquid and one clear. When I say ginormous, picture something the width of three fingers and about 10 inches long. It looked like a comic drawing of a scary syringe!

She sat there patiently squeezing it gradually into me, so as to avoid any spillage which can be very painful. It felt cold going in and I could feel cold spreading through me as it went into my veins, but that was all. Halfway through a woman came around with sandwiches.

I felt hungry so I took one (I'd only had a piece of toast for breakfast, just in case I got sick). I felt rather odd getting chemo while eating a turkey sandwich, it would have been nice to break into silly hysterical laughter but I didn't.

The chemo itself only took 20 minutes, which is how long it took for her to push all the liquid in, but of course there is so much more stuffing around it was three hours before I left.

I did feel queasy for an hour, especially in the car, but ate ricotta pancakes for lunch with no ill effects. So far so good. I can feel a strange sort of prickling inside me, I can definitely feel a foreign substance in my body. Also a rather 'other world' feeling, as though I'm not really here. That's very odd indeed, and not entirely unpleasant.

Late evening woes

As the day has gone on I've felt worse and worse. The poisoned feeling has spread, it's now like an icy wrongness in every vein in my body. Who knew I had so many? Pick a spot and there's a freaking vein there. Oddly the pain in my shoulder from the port has receded, as has the pain on the other side from the operation wounds. That's one good thing at least.

My head feels heavy, I have a headache, my chest hurts, my limbs feel.. wrong is the only way to describe it. Worst of all is the nausea. It's not like any nausea I've felt before, it's more as if the nausea permeates my entire body, not just my stomach, as though I'm allergic to the air or something. It's my whole body saying, "get this disgusting muck out of here it doesn't belong! Now!"

I have two of the most powerful anti-nausea drugs plus a steroid one so I can only imagine how terrible it must have been in the days before them, as I'm told they are very effective. I have eaten lunch and dinner and kept them down (at least so far) but we ain't in Kansas no more. Definitely feel as though I'm not on the ground, sort of floating an inch above. I'm wrapped in a blanket of something that doesn't let me near the world.

I'm going to take a sleeping/pain pill tonight in the hope this will let me sleep despite it. Tomorrow I have to take this anti-bacterial thing which helps prevent my low white cell count from letting in an infection. That, especially the first time, makes some people's bones hurt, though only 25% so for once numbers on my side.

Fingers crossed.

Symptom roll call

Here's a list of usual symptoms for this type of chemo treatment (known as "dense dose AC"). "Uncommon" means 6-20%, "Common" means 21-50%, "Frequent" means 51-95%.

Source: Journal of the National Cancer Institute Monographs No. 30, 2001

In addition to agreeing with the above, my doctor added the following, in descending order of likelihood:

• mild to moderate taste changes (temporary)
• bone pain from the neurolastin I'll take to reduce risk of infection
• severe tissue damage if the Adiramcyin in the chemo goes into the tissues during chemo, which is unlikely
• nail changes, ridges, bands, discolouration or slow growth
• rashes
• bladder damage, which is why I have to drink heaps of water
• menopause, infertility
• very rare: lung, liver, kidney, heart damage and leukaemia (0.001%).
• "chemo brain", which is a fuzzy thought process and difficulty concentrating, especially towards the end of treatment. My doctor said he thought it was due to stress rather than the chemo, and after today I can totally believe it. The Journal cited above says there is evidence it's real, but refers to a study on a different treatment (CMF).

What they didn't tell me that I've noticed:

• feeling my body is being invaded
• floaty, weird feeling (no longer slightly pleasant, it has veered onto the dark side now)
• tightness (probably due to anxiety)
• headache, heavy limbs (probably due to the anti-nausea drugs)

What they didn't tell me from other sources:

• weight gain (though less likely with my particular treatment, which lowers the appetite)
• dry skin on hands
• long term, possibility of increased risk of heart disease
• fatigue, though my doctor says you don't get it, all the patients I've met, nurses and online info say it's common.

This is a good page if for some odd reason you want even more info.

Feelings

Yesterday I felt pretty good, considering.. maybe a 7. A lovely rest in bed in the morning complete with croissants and a pussycat cuddle, then lunch with friends which was silly and fun, then mooching and watching TV with Tony... a very relaxing and pleasant day. Oh, and how can I forget getting onto Ellen Datlow's recommended list, totally that made my day. The sun shone, I even made chicken soup for my friends.

Now, I can't quite remember how it felt. I know it happened, intellectually. But no idea what that nice happy feeling was like today. None.

Why am I writing such copious amounts of odious detail? And using two adjectives in one little sentence?

It makes me feel better, that's why. It gives me the illusion of control over what is basically completely out of my control.

Things I need to do

• Walking, even if just a little every day
• Eat small meals more often
• Wash my hands like a maniac with anti-bacterial lotion
• Take my temperature to check I don't have an infection
• Drink lots of water to avoid bladder damage
• Work out whether caffeine and alcohol in small amounts are okay for me or not
• Up my meditation and visualisation (daily)
• Naps
• Reduce stress.. god knows how
• Do lots of other things within my energy capacity to distract myself, eg working, writing, watching movies etc
• Take up all the support offered, eg support groups, the Look Good Feel Better workshop, etc
• Buy a freaking wig and cut my hair
• Buy head scarves, at least they are in fashion this year, though normally I wouldn't go near them with a barge pole
• Keep repeating: this is going to cure me, it's GOOD
• Laugh and have as much fun and pleasure as I can.

Tuesday August 10 2004

Zonked

I slept until 9, ate a light breakfast and took medications, then slept again until 3pm. Despite that I am still tired. When I say tired, it's not the kind of tired that I have ever experienced before. It's as if an energy vampire came in the night and sucked out every piece of me, leaving an empty shell. My whole body is complaining that it's being forced to exist, can't it just go and sleep someplace.

The nausea is mostly gone, though i get occasional flashes of it, they are mild and bearable. In its place this terrible exhaustion.

I have no appetite, I forced myself to eat breakfast and just now ate two pieces of dried fruit, and I'm really not hungry. I have to make sure I get nutrition so I will eat a little once a hour, just to make it more bearable. Still at least I should lose some more weight...

Creative visualisation... the geek way

I have started visualisation and mediation again, which I had let lapse recently. Tony made me laugh last night when I said how could feel my body protesting about being full of poision. He said I should inform my body that I'll remove the poision when it removes the cancer, and not before!

I like it. So today my visualisation went like this. First I got myself into a meditative trance. Then I rounded up every big screen and small screen hero I could think of, even those I don't much like. Arnold Schwarzenegger as the Terminator, Rocky, Sigourney Weaver in Alien, the cool blond chick from the new Battlestar Galactica (the pilot), Poirot (he can find the buggers if they feel like hiding), a huge range of Jedi knights, and all the good guys from the Lord of the Rings, etc.

The cancer cells.. oh god this is embarrassing, but they showed up without my prompting as the Clone fighters from Star Wars, Attack of the Clones. I know I know. But in my defence, my subconscious has obviously realised they are cells that divide and replicate easily and made the connection. *Shrugs*.

The action is taking place inside an elaborately decorated palace. I gave the troops some poison to put into the ends of their weapons. Then I delivered a rousing speech, along the lines of kill them all, if you must damage the palace a little you must, (but try not to! the palace being a metaphor for my body). I don't care how many of you come back to tell the tale, just kill them ALL. There can't even be one left because you know what happens when you have one clone.. you get more.

The troops erupted in a deafening roar, and ran off enthusiastically to find clones to kill.

They say creative visualisation rouses the body's defences and gives instructions from the brain to the various bits of your immune system what to do. I don't think mine is in any doubt at this point!

Wednesday August 11 2004

Hell is an emergency room

Sartre was wrong. Hell is not other people. Hell is an emergency room. At the chemo clinic I was told several times to come straight in if I noticed any sign at all of an infection as it can kill you with lowered white cells in a matter of hours. Don't wait overnight, they said.

Last night I noticed my boob was (cover ears if squeamish!) a little green at the end with a spreading red patch. This can't be good, I thought. It was 11pm so we headed off to St Vincents. The emergency waiting room was nearly empty but inside there were apparently accident victims waiting on trolleys who hadn't yet been seen for three hours.

The triage nurse looked at me after half hour, and said it would be several hours more. We watched Voyager, and then I was overcome by tiredness and a general sense that no one gave a shit.

I had an overpowering need to crawl into a warm bed and sleep, and the chairs were horribly uncomfortable, and there were two tvs set on different channels, and the lights were very bright, and overall I thought this is no way to treat someone who is sick at 1am.

So I gave in to these feelings and allowed myself to have a pathetic whinging cry, and blubbered at the reception nurse that had she ever had chemo, she would know how much I needed a place to sleep and a doctor to tell me I could go home now. I figured it would be more likely to get me attention than waiting patiently. Oh, that's where the word comes from: patient. Patiently. Haha. This show of emotion was real, mind you, it was just that I could have controlled it had I really tried.

They said there were no beds, really none at all, and I said I didn't need an actual "bed" in hospital terms, just some place to lie down, and they said there weren't any. I just didn't believe it and bawled some more. Tony went over to the triage nurse and pleaded some more.

Eventually they brought me a pillow and a blanket and not too long afterwards a doctor aged about 15 or so it seemed came to see me and led me into the plaster room where miraculously there was a bed. By now it was 2am. He asked me a lot of questions, prodded my boobs, and said basically it looked ok, but he didn't know boobs that well, I should have asked for my specialist during the day.

The registrar came and had a look as well and agreed, then 45 minutes after that they came back with an antibiotic and sent me away. Time: 3am.

If I were going to set up a system to help SICK people in the middle of the night, that would not be how I'd organise it. Surely you'd want to have somewhere comfortable for people to wait, at the very least.

Look I know these places are under resourced and stretched, but it's not as though they don't know that sick people will be arriving with their very worried relatives. The aim seems to be to make things work for the medical staff with almost no concession to the needs of the sick people who show up there.

And as for accident victims on trolleys waiting hours for attention, what's with that? And how about the guy with blood streaming down his face who stood there for ten minutes (no chair!) waiting for a triage nurse to let him in, but the nurse didn't appear. So he left again. God knows where to.

Bleah.

Just talked to my specialist, who says it's nothing to worry about, but I should take some antibiotics to be safe.

Thursday August 12 2004

Blah

Nausea hit this morning when Tony brought in a bowl of Nutrigrain. I had no idea it smelled so strongly! I think my smell has ramped up to let me know what to eat and what not to, but it is on the blink. I avoided the cereal, and instead ate the antibiotics I'm supposed to have before eating, and promptly threw them up.

I feel sick, and tired, and grumpy. Horrified that there are three more months of this. I'm totally sick of people saying, it's only a few months and then you'll be all better, trying to cheer me up. A few months isn't long in normal life. To me it's an eternity.

Definitely in a blah mood today.

Tonight I'm off to the first meeting of the breast cancer support group at the Mater, hoping it is not full of brightly helpful folk who want me to be happy happy happy. If so I will just go again.

Outdoors

Working today, which is good, it keeps my mind off everything. I had a little lunch break outside on the front porch. The sun hits there in winter and we have cane chairs to sit on, so I sat eating grapes and drinking water and watched the whole neighbourhood stick its collective nose out: oh goodness, Alinta is outside during the day.

I had visits from neighbourhood cats, dogs and also my lovely next door neighbour Gilbert (who is female, btw) whose husband has been very sick for months with kidney problems.

My cat and dog followed as well so it was a mighty companionable moment.

Groupiness

I attended the first breast cancer support group workshop tonight and am under strict confidentiality instructions, so I can't say much about the women there which is fair enough. All of them except me have children, one has three under five. They advised me to cut my hair very short before it falls out, because it's really horrible seeing it flying around the house in big clumps. I guess I will have to do that.

Two had wigs, neither of which were too obvious. I'll have to take care with that. Obvious rug, not a good look.

The group was a little awkward perhaps because only four women came (there are two more who may come another time). No "happy happy"s though so that was a relief, and a little relaxation at the end. Plus yummy pastries.

My nausea is finally abating, not sure if it's time or the maxolon tablets I took earlier, but either way thank god for that. Apparently, so the psychologist said, fatigue is the last symptom to go and can last months after radiotherapy is finished. The specialist did tell me it would be 12 months before I feel totally okay again.

Waaah. I so wanna write my novel.

Silly words

Today my sister sent me the "Superior Person's Second Book of Words" by Peter Bowler, filled with totally silly obscure words. Here are a couple at random:

Paizogony. n. Love play. "I know this great little Italian take-out restaurant. Let's go down there first and then go to the drive-in and have some paizogony in the car.

Eremophilous. a. Inhabiting a desert. "Condition of someone who has bought a newly built house and then been confronted by the classic choice between having curtains and having a lawn."

Teehee. My sister sure knows how to cheer me up.

Friday August 13 2004

Final things

Mum rang and informed me that she's chosen her "final thing". After much guessing it turns out she means the song she wants played at her funeral. She read it out, and it was a song she sang to me often as a child, and it sent me blubbering away from the telephone.

She couldn't remember having sung it to me, and didn't remember it was a song.

Dalwhinnie good

Today I decided that since Tony has been so wonderful, I'd buy him a little something. That something was a bottle of top shelf Dalwhinnie 15-year-old scotch, so top shelf that the long arms of Chris barely reached it to topple it with the tips of his fingers off the shelf for me.

Amusingly in the same bottle shop there was a bottle of Father O'Leary's cream sitting ever so innocently on the shelf (near the bottom, natch). Regular readers will no doubt recall the fabled events of Voldemort night back at Clarion in January, during which copious amounts of this evil brew were consumed.

The bottleshop guy commented that it also comes in hazelnut, and did I really hear him say capuccino flavour as I coughed and spluttered?

I have never been a particularly scotchy type person. While it does give one a pleasant warming effect, the kickback at the back of the throat and the side-to-side wiggle it sends my neck and head into (think 'BRRRRR') don't exactly thrill me. Neither does the metho-in-the-stomach feeling.

If anyone offers me good scotch, I normally say, "no thanks - unless you don't mind if I put dry in with it". Then I watch them shudder and clutch the bottle in their protective arms. So buying scotch for Tony is usually a warm-hearted, giving thing to do with nary a thought of oneself.

Anyway, back at the ranch tonight, Zara, Tony and I drank a refreshing glass of the virgin Dalwhinnie. I drank a dram of the Dalwhinnie, cause well I'd had a hard week, and a hard conversation with my mum, and boy did it go down smooooooooooooth.

*Drum roll*

I have now become a Scotch Drinker.

Mmmm. Pity it's so bleeding expensive. So now it's a case of "I don't mind if I do, but only if it's the good stuff, k?"

Saturday August 14 2004

Wig Lady. Turban Lady. Whatever.

Today I bit the bullet and went to visit the wig salon. Run by a charming Roumanian lady by the name of Suzanne, the salon is hidden above offices in Elizabeth St. Suzanne was delightful, and placed the perfect wig on my noggin first up. Yes, I tried on a bunch of others but the first one was so like my own hair I was happy with it. She and Tony wanted to convince me to buy a shorter one ("takes years off you!") but if I want a change of image at any point now is not that point.

I tried on a blonde one for fun, and was amused to see how like a young Diana Dors I looked. Well youngish, anyway (coff).

Wigs are frighteningly expensive. Even the synthetic ones she had there, which are reasonably nice, are over $500 and for anything natural looking it's upwards of $1500. Gulp. On the other hand, no hairdressers visits for a while so I guess it will work out. Eh, I'm not going around with a synthetic wig, I'm just NOT. The fully real hair ones are twice that again!!

Suzanne will also produce me some fabulous turbans with some hair under so it doesn't look too "baldy". She did a great job, hitting the right note between sympathetic and business like.

However. I came out of there knowing, really knowing now that my hair will come out next week. I will be Turban Lady. Or Wig Lady. Erk.

Growers Market

Due to jumpiness this morning about the upcoming wig appointment, I was unable to stay in bed. Yes, down there in the back: Me, Up Early.

I rose. Tony rose. It was early. So we went up to the growers markets at Orange Grove. In the year since we last visited they have burgeoned. As well as the organic produce we went there to buy, they have all kinds of gorgeous stuff. Handmade silk bags, soft woollen scarves in rich colours, wooden toys, herbs, jewellery you might actually want to wear, and so on.

We bought freshly cooked corn on the cob smothered in butter and ate them on the spot, yum. There were so many people enjoying the sunny day, it was a lovely atmosphere and (if I ever get up early again) I will definitely go back.

Now THAT's scary

Leafing through the Superior Person's Second Book of Words, I find to my amazement that I actually know a surprising number of them. Some of my very favourites are in there, for instance this one:

Laaba: a storage platform high enough to be beyond the reach of animals (an Alaskan word). Also, the top shelf of the pantry, where the kids can't get at the animal-shaped gingersnaps and the packets of colored cake sprinkles.

This is in common usage in our house in reference to our food scavenging dog, as in: "Darling, did you forget to put the scones on the laaba again?"

Today's new one is this:

Pnigerophobia, n. A morbid dread of being smothered.

Monday August 16 2004

Need more dividers in brain

Oh crap.

What if I die of this?

It's not the actual dying, or being dead that bothers me. When I'm dead I won't care. Either (option 1) I'm in some fabo afterlife with new concerns, or (option 2) utterly vanished. Either way, after I'm dead it's probably not going to bother me.

It's the dying in protracted pain part that freaks me out. And the not living the second half of my life part.

I know I know, I have a 63% chance of living 10 years. The number is burned into my brain. There's also a 37% chance that I won't. I've never been much of a betting person.

Nearly all the time I'm sure this is just a blip, that in a year I'll look back and this will just be my annus horribilis. But now and then I forget to draw the veil over the animal part of my brain and I hear it wailing....I could die.

Note to self: buy extra thick veils tomorrow.

Cancerphobia: a morbid dread of dying of cancer.

Tuesday August 17 2004

The little things

Some questions occur to me regularly in coffee shops. I was in one yesterday with David.

• why do men make so much more noise than women? the waiters slam down plates and the waitresses don't (generally speaking, okay?)
• what's with the icing they shove all over desserts? Why do I have to scrape it off my top afterwards? What does it really add?
• how come some people get coffee and others don't?
• why do some restaurants understand the concept of x tables per waiter, and others just muddle along however, resulting in either no service or ten offers of order taking?
• why oh why are so many coffee shop chairs uncomfortable?
• why do I never remember to say, no sugar thanks, thus wasting a spoon and a packet of sugar that I'm sure they end up throwing out. I must have been responsible for throwing out kilos of sugar in this way over my life
• what's with tho