alinta's blog - November 2004 - writing SF, breast cancer, glioblastoma, and other random stuff

Here's an index to the events I've recorded in my blog about mum's illness.

Mum on a plateau
Mum can't move
Nursing help
Mum near end
Mum's death

However, when it arrived, a good half an hour after everyone else's food, the platter was...adjectives fail me so I'll just tell you what was there.

There were sixteen prawns. These had been deep deep frozen for several years, then inadequately heated through. They were tiny (think fingernail size) and covered in so much batter of the thoroughly unpleasant kind that the prawn represented about 2% of the food in each piece. Leaving 98% batter, and I exaggerate not.

There was also one piece of thin, overcooked fish coated with the self same batter, and not a vegetable in sight.

However, I was wearing a cool hat. I took off the hat at one point to let my workmates see how bald I am, and I think it shocked them a bit. Still, do them good to see me as a sick person. Help them to understand why I can't do everything I normally do even though I don't look sick with my wig on.

My regular radiotherapy oncologist was sick on Wednesday. The receptionist asked if it was okay that I saw his associate; we'll call him Dr X. I said yes.. I didn't want to have to wait another month for an available appointment.

My regular doctor is lovely, warm and personable, explained things well, and came highly recommended to me by my surgeon.

Dr X I presume is also a good doctor or my regular guy wouldn't use him to take appointments for him.

Through this whole experience I have not felt at any point like just a "disease". I've been treated as a person with a disease, even by that mean liver scan man who got angry because I have difficult to reach veins.

Dr X started off well. "Hello Mrs Thornton, may I call you Alinta?" But within ten minutes he'd let slip a darling. He was okay at explaining things, but where my other doctors made me feel I was a partner in the decision making process, he made pronouncements.

For instance, I told him I would need to fly to Adelaide at some point for my mum, for maybe a week. He said "a counsel of excellence would be not to interrupt your treatment." Not, sorry to hear you mother is dying. Just a blanket 'don't do it'. I said, but my mother is dying, I have to go. I asked if there was any evidence to show that interrupting treatment had a negative effect on my health outcomes. (See I'm learning their jargon).

He said there's no evidence to show that, but it's 'counsel of excellence' not to interrupt the treatment. That is treating the disease, but not the person. As a person I must go to my dying mother, and he should not have been placing that kind of pressure on me, not without evidence to support it.

He also treated my body with disrespect, jiggling my breast up and down, poking the drain hole site painfully "it looks a bit fluidy", asking me what cup size I was. (What, the CT scan machine comes in different cup sizes?)

Then he rang the radiotherapy department and said, "I've got a breast coming down for you."

He saw my outraged expression, laughed a little sheepishly and said, I know you're more than a breast.. that's just how we talk.

I take a long time to process things at the moment. In better health I would have snapped back, not in front of me you don't, but I didn't even get angry until about an hour later.

Then I had to endure half an hour of being squeezed into stupid positions in the CT machine. The bed inside is made to fit the "average person". I mean I can understand people making cafe chairs that way, but machines you need to save your life?

They should fit everyone from the tiniest child to the hugest adult. I'm big.. sure.. but by no means the biggest person in the country, nor with the biggest boobs either. They had to literally unbolt the bed and move me sideways on it to get the right radius. The guy was most apologetic and nice about it, but still.

Next the CT guy tattooed me, to record the position for the other treatments. These are permanent. This distressed me. I hate the idea of marks on my body, or holes. I have no tattoos or piercings, not even earrings. Putting holes in your body on purpose just seems weird to me, though I'm fine with other people doing it I find it abhorrent for myself. Yeah, the tatts are really tiny little dots, I'm sure you couldn't see them, but I know they're there and I hate it.

Then the guy whips out a red marker and draws texta pen arrows in red on my skin pointing to the tatts. Not so much as a do you mind.

Then another guy pops his head in.. I'm lying arms over my head, boobs on show, with really only knickers between me and the world, and this strange guy pops in and TAKES PHOTOS of my boobs. No do you mind, no this is what they're for until after he'd started doing it.

Hmm. They all need a bit of etiquette training. Finally, Dr X shows up and stroked my knee as he said a couple of platitudes. Remember, I'm lying there nearly nude, arms above my head, with fresh tatts and red arrows, feeling like a total piece of meat.

I looked at the appointment card last night and realised to my horror that Dr X is now my regular doctor! Horreur.

So. Today I rang the hospital and asked for my regular doctor back. "Just checking that Dr Regular is still my doctor," I said. Yes, the receptionist said. She rang back half an hour later and said, actually Dr X did your planning session so he's doing follow up. I said, "He's not the doctor I was referred to, and I'm not comfortable with Dr X. I want Dr Regular to follow me up."

She did agree to ensure that Dr Regular would be there on Tuesday. But in that tone of voice that makes one suspicious you're being fobbed off. If on Tuesday Dr X shows, I'm going to have to make a fuss. I don't have energy for fusses, but I SO DO NOT WANT HIM.

He is an arrrogant prick who treats me like a piece of meat. Dr Regular is lovely. If I had had any idea that accepting Dr X's appointment committed me to him for the next six weeks I would have declined, but this was not explained to me.

Grrrrr. It makes me thankful that I have private insurance. At least I have the power and the right to choose my own doctor.

Though I did write cheques for over $1100 yesterday in addition to what I got back from HCF and Medicare. Must be getting up towards $8000 out of pocket by now.

This is me sans wig as of early this week. I've lost even more hair since then and you can see heaps of scalp.

Saturday 6 November

The cool thing about not having a birthday party is you get to have several events. Part one was tonight. We went to dinner with some friends at Liquidity, down at Rozelle Bay. It's a good restaurant, and is on the water, with comfy chairs. Take a virtual tour.

Tonight there was a big birthday party in the function area and they had a very good Spanish band playing flamenco-y music. I had to ask the restaurant to switch off the competing music they were playing - who wants to hear two lots of music at once? - but once they had it was cool.

The food there is scrumptious - I had scallops with poached figs, then wagyu beef with creamy potato mash, then Tony and I shared a dessert tasting plate which had little serves of a liquorice flavoured moussey thing, a souffle, a lemon pudding, a to die for chocolate pudding and an orange sherbet sorbet. Mmmm.

There's a lovely couch area outside where you can lounge with a drink first, and afterwards we strolled along the waterfront and drooled over all the huge speedboats moored there. My friends gave me a lovely organza evening scarf in reds and golds.

The waiters at Liquidity are somewhat cutlery challenged.. there's never the right cutlery and they don't lay it correctly so you're always picking up the wrong knife.

Tomorrow is Thorbies, and several stories came late so I have reading to do now.

Monday 8 November

Thorbies yesterday was at Wendy's place, in the garden. A lovely balmy day and we drank wine, munched cheese and mangos. I found the experience of being critiqued trying yesterday. I'm just not the same as usual..no skin. (As in, not even "thin skinned").

Parking my car in Wendy's driveway I backed up just a little too far and found I smashed her pot of basil which was sitting on the edge of the porch. It was totally out of my sight.. I was watching the railing and thought I was far enough away. Oops.

Afterwards we repaired to a Japanese restaurant nearby and had really yummy sashimi, gyoza and katsu don, followed by chocolate mousse cake provided by Caroline and Anne.

This morning I found out that Chris and Zara had gotten a tummy bug, possibly from the Japanese restaurant, which is odd because I didn't and I can't think of a single thing that they both ate that I didn't. Chris and I shared entrees and swapped tastes of our mains, and Zara had the same main as my entree, and the same entree as Chris. Hmm.

Anyway it was a pleasant evening, celebrating not only my birthday but Chris's, which is Thursday, and Mark's, which is in a couple of weeks.

Back at home I watched a tape of Idol. Casey sang "You're so Vain" and made it really count. Anthony sang Bridge over troubled water, perhaps a little over the top but that's what the Idol fans like, so you can't blame him. Courtney is boring. He's always the same. He murdered Freddie Mercury's Somebody to Love.

I would like Anthony and Casey to go through to the final but I bet it's Anthony and Courtney. Casey has been in the bottom three too often.

This morning Tony gave me two fabulous presents: a new printer (my old one broke on the way up to Clarion and I've never gotten around to fixing it.. it's a piece of crap anyway and it hardly seems worth the trouble). And a real leadlight lamp for my desk, it's so pretty.

Today my workmates took me to lunch at Prasit's in Crown St, where the food is tasty and reasonably priced. We climbed the stairs to find no one there (yay, it's noisy and crowded usually), but the room was full of cooking smoke. Naturally enough someone said open a window, so I went to the window and opened it. It was a sash type, so I pulled the catch across and lifted it up.

I don't quite know what happened but the window sash broke and it went screaming down in my hands, there was nothing I could do to stop it and it smashed the glass.

Since I have very fast reactions I was able to grab the largest piece of glass before it left the window, which is lucky because otherwise it might have gone out the window and sliced some passerby's throat. I grabbed it with one hand and managed not to touch the edge so didn't cut myself.

The waitress was Not Happy but didn't say anything more than "you're not supposed to open the window". We decided that opening a window was a natural action in a smoke filled room, and that if they didn't want the window opened they should lock it. "Don't blame the user", someone said. Yeah!

I don't think Tony would mind me telling you this: he sent me an invititation to dinner this evening, thusly:

I'm trying to guess which restaurant but I can't. It's not in the overseas passenger terminal (I checked) so that rules out several places.

Is it next door to American Express? (on the edge of plastic) Can't think of a restaurant near there.

Becasse, Bistro Moncur, Buon Ricordo, Longrain, Sean's Panorama and Balzac are all on the ground. Icebergs isn't on the ground but over water, as are Pier and Flying Fish. Yoshii is Japanese, so that's out. Bilson's is in a tower (Observatory Hotel), so that's out. Pity, it's Tony Bilson's restaurant and I love his cooking. Omega is in a basement.

So my best guess is Guillaume's, in the Opera House. It's French, so comes from overseas and is on the water. It's above ground. And on the edge of plastic (by far the hardest clue), could refer to a silly joke we have involving a plastic replica of the opera house.

Second guess is Aria, since it's very close to the Opera House and on the first floor.

Tuesday 9 November

It was Guillaume's. It's in the little shell of the Opera House. We had a lovely evening, but I don't think I'd go back there. The cooking was extremely accomplished, but so middle of the road. I had white asparagus with truffle oil, (yum), roast barramundi with to-die-for potato mash (did it have a little marscapone in it?), and mille feuille with poached pears. All beautifully cooked and scrumptious, but at a two-hat restaurant I want a little more excitement.

Guillaume's, for a two-hat restaurant, had iffy service. For one thing, we had no less than five separate people serving us at various times. We waited until after the entree to place a drinks order. Our main waiter was a bit snippy.. just a tiny bit, but you don't expect that in a place that charges $40 for a main course. You have to go all the way out of the restaurant and past the cloakroom to use the loo, and hope that it isn't interval for one of the performances.

On the other hand, the environment is totally gorgeous, curving glass walls overlooking the harbour, the exposed ribs of the shell above us, carpet (yay!, so we can hear each other speak). The wine list was Huge, including a lot of French stuff which I have no idea how to order. They had vintage Dom Perignon at $2500 a bottle (naturally we didn't order that).

A nice touch was matched wines by the glass for each dessert, and utterly divine petit fours.

I was stoked to find Courtney left Idol last night. Watching the Monday show on tape is good, because you can speed through nasal Jim's banal commentaries, all the replays of last night and foreplays of Thursday's show, and just focus on the business.. all of ten minutes' worth.

Casey looked completely shocked to get through, she totally thought she was going. Courtney looked very pissed off, hah. He totally thought he'd win.

He grates on my nerves that man, so up himself, so outraged by criticism, so "I know all about music and you don't". There are guys like him in every field, who memorise everything and think that knowing lots of factoids makes them special. Hey, I don't mind people who know heaps of stuff. It's when they use it as a weapon or as though it means they are better people that it annoys me.

Anyway his voice is interesting, and he's a good performer, but I find his delivery bland. He doesn't convey much emotion in most performances. There were a few exceptions.. "I've got to get you into my life", "You weren't in love with me", and a couple of others. But for the main he leaves me cold.

Casey is amazing, the way she exposes her innermost feelings in nearly every performance she does. I taught hundreds of violin students and hardly ever came across any who had that kind of facility. It really is rare, she deserves to be where she is. She's going to be a wonderful performer with a great career. So cool to see a large, part-indigenous woman doing so well too.

It's going to be a tough competition between her and Anthony. I can't see Courtney's fans voting for Anthony, their styles are too far apart. I reckon Casey will pick up a lot of his votes.

Anthony deserves to win the competition because while he isn't quite as heartfelt he certainly does deliver emotional performances, and his voice is just so gorgeous, powerful and strong. Casey's vocal training has a way to go, she sometimes has pitch problems, and her control over tone colour is much less accomplished. I have to keep remembering, by God, she's only 16!

However, both performers would be completely acceptable winners for me, unlike last year's pathetic choice between bland Guy and talentless Shannon. A great deal depends on their performances on the next show.

Wednesday 10 November

Mum can't speak at all now, not even yes and no. She can make a noise, kind of "errr". She can't move her body much, if she's stood up she can't bear any weight on her feet herself. She's having a lot of trouble swallowing, but is still managing to eat.

I had my first session yesterday. Tony came with me as it was the first one, but I'll go to all the others by myself. It wasn't too terrible. I got into one of those stupid hospital gowns, then went straight in as there was no one before me. They had set up the "bed" according to how they'd worked it out last week. I say bed, but really it's a nasty piece of iron that sticks to your skin and pokes into you.

There's a huge machine that hovers over you and they put it at various angles, trying to avoid any nukes going into delicate parts of your anatomy as far as possible. The actual treatment only takes about 5 minutes total, but there's some moving about in between bursts and they also took some xrays.

It didn't hurt, it was just uncomfortable lying in that position and a bit scary knowing they are nuking you.

I'm not allowed to wear deodorant or powder, and must moisturise my skin with vitamin E cream. I'm not sure why no deodorant but I'm allowed something called "Crystal rock" which is some kind of natural one, so I'll use that.

I'm not allowed to use soap on the area either. I guess they're trying to avoid drying the skin out?

Dr X was lurking around the building but didn't come near me. I told the nurse in charge I wanted Dr Regular and that I didn't care for Dr X. She said she understood, and then proceeded to tell me that Dr Regular is often difficult for patients because he talks fast and "over their heads". She often has to explain what he said afterwards, she told me. But I didn't have any problem with him at all.

She also offered to find me a place in the lyphodema clinic, which is the first time anyone has bothered with that. I accepted gratefully.

I'm thinking today how lucky I was not to slice my arm open when I caught that glass on Monday. I'm not supposed to even nick my right arm, let alone cut it with glass. My lack of lymph glands means that any cut to it could be extremely serious. My arm will not handle infection well and it can permanently damage my arm.

It was just an instinctive reaction.. the glass shattered, and before it even left the window I had caught it, just stuck out my hand and grabbed.

Though thankfully I do have fast reactions, so in a situation like that it's as though time slows down a bit. I saw the window break, had time to think..passersby, could get their throats cut by that huge bit of glass, must catch it...put my hand out and also had time to grab with just the tips of my fingers on either side of it, avoiding the edge touching me anywhere.

Perhaps in time that process will include.. but I mustn't touch it in case my arm is injured. Hmm.

I was just reading Culture Strain, and it made me mad. Apparently, so says this blogger, Casey is too fat to win Australian Idol; she'd be an embarrassment at World Idol.

For one thing, Casey sings with real feeling, unlike most Idols who sing with real ambition.

A comment on Culture Strain points out Ruben, from the US and Michelle from the UK Idol, who are both overweight (far more so than Casey).

This points to something tres interesting. The usual method for attaining stardom is private, via tapes and auditions for record labels. Fat chicks would be eliminated right there, as having an image not suited to the marketing machine.

When it comes to the public voting for who they actually enjoy listening to, they really don't seem to give a rats. Two of the three finalists this year are big (Courtney and Casey). Courtney isn't even attractive with it, though Casey is very pretty.

Seems, oh amazement, that the public want something they like to hear. Golly, what a surprise. I mean, a video clip is fleeting, but the CD in your collection is a little more permanent and your ears are the recipients, not your eyes.

I'm sure Anthony's prettiness hasn't hurt him any, but hello, he is by far the best singer in the competition. Pretty singers bit the dust early, eg Amali (who is way gorgeous) but can't deliver a song.

I've also enjoyed the wide ethnic mix in both this year and last year's Idol. Two of the top four this year are Wasps, but one is Italian (and even SANG in Italian once) and one is part Islander. Last year there was Cosima (Greek) and Paulini (Fijian) and Guy (Malaysian) in the top four, with only "I'm the most Australian of us all" Shannon to embarrass us.

Gosh, the Australian public doesn't care what you look like or where you come from, as long as you can damn well sing the way they like.

The list of cool things the Chinese do way better than we do is somewhat startling. It's written for Canada, but applies equally to Australia. Thanks to my ex-colleague Gabe, who's working in Beijing, for this link.

Michael (my stepfather) and Aunt Louise have been caring for mum in her home for weeks now, since she became bedridden about five weeks ago. It's a huge undertaking, and particularly difficult for my Aunt who has left behind her home and her husband (Uncle David) to live in mum's tiny villa, no bigger than a small unit, caring for her 24 hours a day with short snatches of relief when someone comes to help out.

The doctor came yesterday and issued instructions that she not be moved any more, much to Aunt Louise's relief. They'd been hoisting her out of bed into a chair and onto the toilet, I guess trying to retain some semblance of normality.

Now they can leave her be, and simply care for her in the hospital bed they have set up in the living room. Also the doctor has arranged for a nurse to come every day, though I believe only for a short period. They're trying to keep her at home if possible since that was her wish.

My friend Anne came over last night. Instead of a meal out, we ordered Indian food. I've had so many meals out this week, and normally would be happy with another one, but I'm too tired and appreciated staying in.

She and Caroline gave me a bottle of delicious-smelling bubbly shower gel, and a fantastic book of photographic portraits. I will use those for character studies, I find it so much easier to work on a character if I have a picture of them. The photos are by Stephen McCurry, the guy who took the famous Afghan girl photo. There are pics of people from all over the world. Very cool.

Why do people in four wheel drives, or even just large cars, act like they own the road? This morning I was driving along the street outside our office and a 4WD came the other direction. In the middle of the road. And didn't move aside. Like, where did he think I was going to go to?

I had no choice but to drive as I was - on the left - and hope for the best. He moved over just enough to avoid me by a couple of inches, leaving a huge gap on the other side between him and the parked cars. What, I'm supposed to somehow disappear my car?

I notice that 4WDs often park this way too, leaving a huge gap between the car and the pavement. Perhaps they have an exaggerated sense of personal space?

The other day a pair of Fiorelli sunglasses, new, in a case, appeared in my front garden next to the rubbish bin. To reach this spot you have to go in the front gate, go along the porch and reach down. Or, just throw them in and happen to land there I guess.

The weird thing is these sunglasses are glam and totally suit my face. It normally takes 200 pairs of tryons before I find a pair I like, but these just appeared and suit me. I decided there was no point putting them out on the street for whoever lost them to find. The odds were that someone else would find them anyway.

So.. finders keepers! Perhaps the universe has reversed its attitude to me now and is giving me things instead of taking them away. That would be good.

The printer Tony gave me for my birthday is now installed and working, oh joy. The one I had before broke on the way up to Clarion, and I have never gotten around to fixing it. I guess I'll throw it out, it was a cheapy anyway. Maybe someone can fix it up. If you want my old printer, just let me know, it's an HP inkjet that also prints photos. I think the little thingy that holds the ink has broken.

A while back I joined up with Codex, an online critiquing/writers group for ex-students of Clarion, Odyssey etc who are writing seriously. The level of critique there is good quality. So far I have mostly lurked and critiqued a couple of things, but soon I think I'll start submitting stories. They seem like a great crowd.

Yesterday I saw Dr Regular, who asked me why I was so keen to be his patient. I admitted that it was mainly because I didn't like Dr X. He asked me why, and I said because he was patronising. That's far from the whole story but I didn't want to go into detail unless he wanted to hear it. He said, Dr X is my partner, I'm surprised to hear it. Although he has been working in Wagga Wagga for the last couple of years.

Hmm. I'm not so sure that patients in Wagga like being patronised and treated like a piece of meat either.

Anyway, Dr Regular was fine, treated me with respect and explained things. Actually he had much the same advice as Dr X but just in a way that I could go along with, because he was willing to explain reasons for things. Dr X just said, don't take the contraceptive pill because there are too many hormones floating around and your cancer is receptive to hormones. When I asked about evidence he just said, it's "counsel of excellence". Dr Regular on the other hand explained all the evidence to me.

Apparently the largest study so far shows a weak link between hormones and breast cancer, it's ony 4 in 10,000, but it is a statistical blip, and with pre-menopausal breast cancer they like to eliminate every blip because it's so hard to treat.

He also coped with the idea of me going to Adelaide when the time comes for mum, and offered me a way to keep me safe using an alternative treatment.

He also said it's very rare for pre-menopausal women to have receptors for hormones in their cancer. It's a very good thing that I do because it greatly increases my chances of survival - something in the order of 20% - because they can give me Tamoxifen to block the receptors in the cancer cells. I have to take it for five years.

One thing Dr Regular said shocked me. Apparently radiotherapy was first used in 1896, and ever since then it's been a five day a week treatment. All the studies and evidence are based on that. They have no idea whether a two day break each week helps or hinders. No one has ever studied it to find out. I think it's because it's expensive to put on specialist staff over the weekend, and that's such a pathetic reason for a treatment protocol.

Another example of how traditions just get blindly followed for no special reason. I'm amazed that not one study in 108 years has ever thought to see if daily treatment is superior. Weird.

Sunday 14 November

On the spur of the moment Tony and I went to Pearl Beach to a little shack where they let you have your dog. It was glorious spring weather, with daisies and marigolds everywhere, jacarandas and bougainvillea, the sound of the waves and my favourite sound in the world, wind through trees.

Did a whole heap of nothing, though on Saturday night my boss Susan cooked a fabulous prawn dinner for us in her beach house nearby. She is a gourmet cook, yum yum.

Drove home with the top down, wearing my cool new sunnies and a baseball hat, feeling simultaneously cool and self conscious.

OK, I'm over Anthony now. He was totally incredibly amazing in The Prayer, but he's not done it before or since. He has a wonderful voice, and always delivers a great build, but his idea of emotion is to turn up the volume and intensity.

Casey on the other hand, needs more singing lessons, she's often a little pitchy and her diagphragm is a bit shaky at times. But. She really understands the heart of the emotion in a song and delivers it, more so every week. She totally creamed Anthony singing that totally pathetic "hit single" song they're going to release after idol is finished. He sang it nicely. She sang it with feeling.

So.. Casey gets my vote. Though I still think Anthony might win. I just don't want to give him a vote based on one song weeks ago.

Mum has stopped drinking. That means she probably only has a few days more. We'll be flying down in the next day or so to be with her. The timing depends on my radiotherapy schedule, I'm not supposed to miss any treatments at all if I can help it, but if I can squeeze one in before I leave that's definitely a good thing.

On Monday morning my Sainted Aunt Louise called. (She is henceforth to be known in the family as "my sainted aunt", in honour of looking after mum day in and day out for six weeks). She reported that mum's breathing had changed.

Now this is a definite sign of a very ill person being near the end, so Tony and I raced around all day organising everything and jumped on a plane, arriving at mum's house around 6.30pm that night.

I arrived utterly exhausted and emotionally drained. Mum was lying in a hospital-type bed in the middle of the living room. She looked utterly awful, her face swollen from the steroid treatments, her hair not grown back over the brain surgery site, her skin blotched also from the steroids, and her muscles looking wasted. She was unconscious by then and breathing shallowly and fast.

The lovely nurse, Rosemary, started telling us what would happen if she died overnight, from which I gathered she thought mum didn't have much longer.

I spoke to mum a little and stroked her forehead, held her hand, but I really don't think mum knew I was there, unless it was on some subconscious level. I hope she did. Lesley, my sister, wasn't due to arrive until Tuesday morning and we all had a feeling she'd be too late, but by then it was too late for her to make any other arrangements.

Around 9 or so we went to the hotel and went to bed, though I kept my mobile on near the bed. At 6am Michael, my stepfather, rang to tell me that she'd died the night before around 11.05pm. He'd wanted to let us sleep before telling us, and I guess that was quite a good idea. After all we couldn't really do anything, and Louise was there for Michael.

We went over to the house and mum's body was still there. I haven't ever seen a human dead person before and it was quite shocking. Though on the other hand in a way, sort of reassuring. I remember after dad died thinking he'd walk through the door any time, and I certainly don't have that feeling about mum.

Lesley and her husband Patrick and new baby Jamie arrived at 11.45, so there was fresh emotion all over again at that point.

The funeral home came at 1pm to take the body, but before that we all sat around, in the living room with mum's body, talking of this and that, including her life, but also other things, or sometimes we just sat quietly or cried a little. Various people came to the house during the day and I spent much of the afternoon either calling people or answering the phone.

Also I thought about what to have at the funeral, and called Rebecca, one of mum's ex students to ask her help organising everything. She did such a great job for the Silver Anniversary concert, plus her dad Bill was officiating at the funeral.

I thought mum might have decided on the order of service for the funeral, and we spent time looking for a file, but found nothing.

On Wednesday we met with Bill and went through the funeral arrangements, then Lesley and I spent time in the afternoon going through some of mum's stuff, since I knew I had to go back to Sydney today. (I had to make sure I took as little time away from my radiotherapy treatments as possible). While Bill was there, mum's cleaning lady Mary came and gave us a sheet of parchment paper with a printed poem on it of the "Fairy Glade". (Follow the link to see what the poem meant to mum).

Mum had asked Monica to set the poem and a picture of a fairy onto the paper, but never gave her the go ahead to actually print them out. I guess her brain tumour made her forget, because that's the sort of thing mum was great at before that, remembering lots of little details and organising stuff.

She'd asked me to sing the song at the funeral, and I was determined to honour her request. I wanted Emma Horwood to accompany me on harp, but when Emma saw the music she said it wasn't harpish and couldn't be done in the time.. after all, she was playing in The Ring that night. (The Wagner version, not Tolkein). Emma did offer to sing unaccompanied harmonies with me, but I thought I'd ask the pianist in the morning.

Anyway Tony went to buy paper at the local shopping centre, and Michael used the photocopier to print them out, with Mary's help.

The funeral was this morning. It was at a place mum chose, a Christian centre that she used to teach in years ago and that has a strong Suzuki violin method tradition. About 250 people came, ranging from friends to students, ex students, colleagues and family.

The musical items were rehearsed very quickly beforehand at 9am. I quickly decided that unaccompanied harmonies would sound lovely. Emma has a totally gorgeous singing voice, but more to the point it is a sound that I thought would mesh with mine well. My voice is usually described as "clear" and "pure", and hers is too, though she's far more accomplished than I am. She sings AS she plays the harp!

Anyway she picked it up and sightread it perfectly, and the second time through improvised far nicer harmonies than the ones written in the score.

The service was lovely. Bill did an introduction, then I gave the eulogy. It was hard to think of all the things I wanted to say and in fact all day I've been thinking of more things. But in ten minutes you can't really do justice to a life as full and vibrant as hers, so I had to be content with that.

There were also tributes from Mary, mum's stepdaughter, Monica, the Suzuki Association President, and Rebecca Osborne, speaking as an ex-student.

Musical items included Patrick singing "You Raise Me Up", by Secret Garden, Emma Horwood on harp and Emma Luker on violin; then items by Suzuki students, including The Swan, Humoresque, Allegro, Lightly Row and Twinkle. Afterwards some of the teachers and grown ex-students played Song from a Secret Garden. Lesley played violin in that as well. Then last was the Fairy Glade sung unaccompanied by me and Emma Horwood.

Afterwards so many people came up to me and said a version of "Maxine changed my life". She was so kind and generous that most people she had contact with were affected by her for the better.

The one thing I didn't say at the funeral.. because I was scared I'd lose it totally.. was this. My mum was one of those mums who's your best friend. I'm lucky to have had her for the short time that I did. Other people hate their mum, or argue constantly with them, and that isn't how it was for me. Sure, occasionally she got up my nose, but mainly we got on like best buddies, even going on holidays together.

Tony and I flew back to Sydney today, so I can start my treatment again tomorrow, leaving Lesley in Adelaide to sort out some of the practical stuff.

Oh, and I got to meet my nephew Jamie, who is of course the best baby ever. He is calm, happy and smiles a lot, rarely cries and sleeps well. He has great coordination, and learns fast. And yes, I'm a besotted Aunty. Tony was spotted holding him and going totally gaga as well.

Sunday 21 November

I thought I'd seen all my procastination devices, but whoah, here is a new one: poetry. I haven't written any since I was your basic angst-ridden teenager. Yesterday, in the throes of not plotting my novel, I wrote a poem. It was based on a sad story someone once told me, that would possibly have made a good scene in a novel but it's probably not a novel I'll ever write.

Course, I'll never get it published, so it doesn't matter all that much. Though i do sorta like it, but then doesn't one always like one's own poetry, and loathe everyone else's? I do, anyhow.

A bunch of us met at the Marigold today for yum chat: Wendy, Cat, Chris, Zara, Emma, me and Grace, in honour of Grace's visit to our fair shores. We scoffed dumplings and buns and noodles and mango pudding, and gossiped our little heads off.

Afterwards we paid a visit to the Basement Bookshop, which has a rather good selection of remaindered books (though some are the usual shite).

A terrible coffee at Gloria Jeans rounded off the afternoon. Grace regaled us with stories of Clarion in the US - no beeping doors, but sterotyped sorority sisters demanding all man germs be removed, no drinking and no using the stove rules.. yeah, I think their hardships match ours. Course, they had ARMCHAIRS to crit in.. so I dunno.

My sister remains in Adelaide tidying up the practical stuff, and has been getting a huge migraine as her reward.

I decided today that if I'm feeling well enough I may go up to Queensland for the Aurelais Awards and Clarion cocktail party. I have missed so much this year, next year will have to make up for it!

Oh. My. God. I can hardly believe Casey won. Anthony is pretty, and can sing technically way better. Casey will have a longer career, I predict, as long as it's managed well - she can communicate and she can sing in a lot of different styles, whereas Anthony is much more narrow in range, The Prayer notwithstanding.

Perhaps he'll have a great stage career? Though I'm sure that's not what he's after.

And: how about Australia, supposedly land of bigotry and racism, voting a 16 year old overweight half-Aboriginal chick to win? That is COOL.

I hope people like judge Dicko, a marketing guy in real life, start eating their words, and stop commenting on how people look so much - Australians just want good singing.

Guy Sebastian, last year's winner, sang a little during the show and he still sucks. Making it all the more amazing that Casey won this time. I was impressed over again with Angie, I hope she gets a contract out of this.

But how about the show itself? What a dud. Why ask all those singers who didn't even make the final 12 to sing? They were terrible. Then Flynn, ok he was funny for a nanosecond but really doesn't stand up to repeated listening.. he can barely hit a note.

I reckon they span the whole thing out an hour more than necessary simply to fit in all the ads they sold. A pox on their houses.

Monday 22 November

I have three crits back from Codex and they are brilliant, one especially. I know now why that story has been rejected so often. Yay! Not quite so sure how to fix it though. Aye, there's the rub.

What on earth were they thinking with that godawful dress Casey wore on stage for the Australian idol final? Jeez it was a shocker. At SF/fantasy cons (that's conferences, in case you aren't an SF type), there are always a few women dressed like that. They have long lank hair, no makeup, acne usually, pendulous breasts, and slightly dirty tshirts. Then for the evening events, or sometim

November 2004

Monday 1 November

Tuesday 2 November

Saturday 6 November

Monday 8 November

Tuesday 9 November

Wednesday 10 November

Sunday 14 November

Sunday 21 November

Monday 22 November