Monday, December 31, 2012

The other Black Dog

Velcro-dog. Photo by my brother Jeff. 
Velcro-dog is the kind of black dog I can embrace whole-heartedly. His constant closeness is a comfort and a joy. His neuroses are comic. His nagging tends to benefit me as much as him; come outside, he whines, come and play. You've been sitting at that screen for far too long.

He's almost a balance for that other surly beast who's shadowed me since my teens, the one who lies in wait for me round corners whispering his miserable darkness in my ears. Almost, but not quite. I've been waiting for that other dog to find me. It was inevitable that he would, given his regular curtain calls throughout my life. And there's only so long you can hold out, be positive, be up when something as terrifying as the Freeloader gets its hooks into you. I've lasted pretty well, really; I've surprised myself as well as others with my ability to laugh at nearly everything that bastard's thrown at me. But this week I finally got cornered by his rabid henchman, depression.

All the handbooks tell me that it's a common side effect of chemotherapy. It's not just the poisons messing with your brain chemistry, either. Feeling like total crap, physically speaking, for months at a time is a splendid slippery dip into the pit of darkness. Looking forward to a lifetime of uncertainty once you crawl out of that pit is hardly likely to help lift one's spirits, either. And while you're stuck at the bottom, the complete inability to plan anything with any confidence makes looking upwards well nigh impossible. It's easy to get fatally tangled in the dark shroud of here, now, how in hell will I get through the next five minutes of this, let alone the next hour? when you don't know when- or if- your next good day will arrive.

It was losing my hair that did it, of course. I knew it was going to be a problem. I fell, bounced back for a day, wrote my blog post about it, and promptly fell right back into the depths once more.

Without warning, I was back on the ghost train. Every time I caught sight of myself in a mirror I was shocked all over again. Even my Gollum-like shadow frightened me, all skull and ears on the floor in front of me. You can turn all the mirrors to the wall, but you can't turn off the sun.

The Freeloader was having a field day. Now you look sick, see? Now you look like a victim.

Ugly, ugly, ugly, whispered the judges inside my head.

Maybe it's harder for me than for some. From early childhood my whole self-esteem was built on the way I looked. People were always telling me I was pretty, taking my photo, admiring my thick, shiny hair. I was a June Dally-Watkins model by the age of five. That early career, which lasted till I hit my teens, just built on the unconscious, unintentional and totally warped foundation of appearance-based values laid down in me from birth.

You have to look pretty. You have to look like that all the time when you're in public. Look how happy everyone is with you, how they admire you when you look good! When you're pretty, life is easy.You don't even have to say anything. You can just smile and BE.

A dangerous message to give a shy, intellectual child who had trouble interacting with her own family half the time, let alone strangers. All my life, my public persona has been built on the way I look. If I look good, it's easier to talk to people. If I'm having a bad hair day, my whole demeanour suffers. Even with the people I'm close to, I feel self-conscious if I'm not looking my best. All my life, my appearance has been the key to my confidence.

Well, that mat just got whipped out from under me, didn't it? Every day was going to be a bad hair day for the next six months or so. And feeling confident about walking out the door- well, I really didn't know where to start, because every time I looked in the mirror I went ugh.


I spent days 17 and 18 pretty much in meltdown. I cried a lot. I didn't want to get out of bed. The second day I didn't even get on the bike, because by the time I got myself out of bed it was far too hot. And I didn't have the energy anyway; I couldn't even imagine trying to push the pedals hard enough to get up the slight incline to Eagle Bend. Depression sucks the fuel out of you, and so does chemo, and when you've got both happening in the middle of the Bungy summer you end up feeling like a piece of overcooked cabbage- unappealing to look at, and damply floppy.

Not to mention smelling terrible. I was sure I had an odd odour happening. It started about a week before, a vaguely chlorine-like stench coming out of every pore. Even the mosquitoes noticed; they usually flock to me like I'm the entomological equivalent of a packet of Tim Tams, but lately they'd shown no interest in me at all.

Perhaps I should have been thankful for small mercies- my lymphy arm certainly doesn't need to be ravaged by the usual summer horde of buzzing vampires- but it's hard to be pleased about smelling like an over-treated swimming pool.

It didn't seem fair. I'd gone through all that pain with the Neulasta injection to try to get my blood count up quickly, yet here I was nearing the next treatment and feeling as flat as a tack. Why? Was it just the effect of the blues, or was something wrong? There was no way to find out on a holiday weekend, other than driving for an hour to bother the local hospital's emergency ward. I didn't feel like I was an emergency. I didn't have a fever. I was just miserable and lethargic.

I watched some TV shows to try to divert myself, and felt irritated by their depressing story lines- murder, power games, horrible little people doing horrible little acts of cruelty. I picked up a book; same effect. Did the whole world have to be so full of fucking misery?

I switched over to a comedy festival, and found everybody singularly unfunny.

Hmm. Maybe it's me.

In the end I got on the balance board and spent an hour in Wii Fit Land. It was the only diversion that worked. I needed someone to tell me what to do in words of one syllable, because I was buggered if I knew what to do with myself.

You're going too fast, said my virtual instructor sternly as I sweated buckets through the free step class.

Get fucked, I replied, stepping on and off like my life depended on it. Maybe it did. Or maybe I was just stepping in cross-rhythm triplets out of sheer bloody-mindedness. Being told what to do never sat that well with me.

By the morning of Day 19 I was weeping all over the Bear, unable to get out of bed let alone on the bike, and spilling over with dire thoughts. Did he wince when he looked at me too? Was he just being kind when he said he still thought I looked beautiful? I looked like fucking Gollum. Or ET, if you took the buggered-up chest into account. People used to look at my face and my cleavage, and now both of those were reduced to bomb sites. Hardly a wonder I felt ugly. As well as useless.

He's not a philosopher, my Bear. He's a man of action. And so when trying to reassure me didn't work, he got me up and took me to the beach.

It was an inspiration. Part of my problem turned out to be cabin fever. It's all very well in principle to stay away from crowds and avoid infection, but in practice it means staring at the same four walls for five months of your life. Little Miss Independence was going nuts after over two weeks of going nowhere but the odd doctor's appointment, and I didn't even know it till the Bear suggested breaking out of the compound and doing something just for fun.

Off he went to feed the turkeys before we sawed through the bars and made a break for it. Some things just have to happen, even if the sky is falling, Henny Penny. I started to contemplate what I could wear, and was well on the way to convincing myself that I couldn't go anywhere because I wasn't fit to be seen when the phone rang.

Maybe Jools is a spooky bitch too. I got a right royal reminder about exactly where to put the judges in my head, which was exactly what I needed.

“Don't let them get away with that,” she spluttered as I told her how they screamed ugly at me every time I passed a mirror. “Stop right there and challenge them. Look a little deeper at what they're saying to you. Say I beg your pardon, WHAT did you say?”

It made sense. I had to look it in the eye; that's the way I always deal with this sort of shit. Why wasn't I doing it now? I stopped ducking the mirror and just stared at it.

Black singlet top. Long black skirt over bike shorts, so I could get wet if I wanted. Black and white spotted scarf slung around shoulders; no point getting burnt.

Makeup. Earrings. Necklace.

No wig. Way too hot.

Hat? Sensible, but looks wrong. Nah. Red tea cosy, stuffed with bubble wrap.


I beg your pardon?

Um, okay, different...

Rainbow bag. Rainbow umbrella instead of hat.


I was a little overdressed for a walk on the beach. Like I cared.

“Wow. You look like an Egyptian princess,” said the Bear.

An hour later we were strolling along Chinaman's Beach, laughing as the wind tried to turn my rainbow umbrella into a spinnaker. We sat in silence at the end of the point, watching turquoise and white waves breaking over Snapper Rocks as the tide went out. Perched under a marbled wall of sandstone and surrounded by weirdly beautiful seaside plants, I thought about the healing power of nature and wondered how the heck I could have forgotten about it. 

Chinaman's Beach on my birthday.
Didn't take the camera this time.
I imagined taking everything off, even my bloody headwear, and lying in the water till it washed the ugly thoughts right out of me; imagining it was almost as good as doing it. Chickening out of the full monty, I ditched the skirt and ventured out to paddle my feet, watching the patterns of light through the ripples as the water sucked back out to sea. I stayed there washing the ugly off till my skin started to tingle.

“Time to go,” I told the Bear. “I'm starting to burn.”

And I set my spinnaker for home, mooring briefly at the local seafood co-op for some schoolies on the way.

Nature, the game changer. Don't let me forget again.


The prawns were a disappointment to me, but not because there was anything wrong with them and not because Ferdinand chucked a tizzy. They just turned out to be yet another food that now tastes like nothing.

There's no rhyme or reason to what's happened to my taste buds over the last week. Certain things taste exactly the same- sweet potato, cheese, nectarines and apricots, custard and Christmas pudding, kangaroo sausages, liquorice, peanut butter. Yet others either taste of nothing at all, or have acquired a strange and worrying overtone of something else.

Fishcakes, made from half-half red salmon and potato with my usual balance of seasonings, taste like I showed the label of the salmon can to the dish of potato and then threw in a bucket of dill. When I throw on lashings of lemon and salt to liven them up, I can't taste that either. Hot coffee smells acrid and unappealing, yet served iced over a scoop of ice cream it's still delectable. Garlic butter on my jacket potato reminds me distressingly of moth balls. The cardamon, cinnamon and star anise in my Pho soup, which were a splendid combination a week ago, now taste distinctly odd.

And so on, in increasingly bizarre ways.

For a dedicated food lover and cook like me, this random assault on my taste buds would in itself be enough to throw me into a decline of spirits. I remind myself that I'm blessed not to have thrown up at all so far; I remind myself that Ferdinand's peculiarities have been more amusing than dire.

Then the Bear reminds me that this is likely to get worse rather than better as the treatment goes on, and my spirits sink again. My pantry is already full of foods that appealed to Ferdinand for a few days and then were rejected. In five months' time, will there be anything at all left that I enjoy eating?

That's a sobering thought. Cap it with the thought that, thanks to the drugs, I'll probably gain rather than lose weight, and it's hardly a wonder that 'depression is a side effect of chemotherapy'.


This morning I still woke up too late to get on the bike, but at least I didn't beat myself up about it. I just got on the Wii and swore at the virtual instructor for an hour instead, then went and jumped in the lake. Um, I mean the dam.

And learning a lesson from yesterday's excursion, when Working Dog woke up limping for the third day in a row I decided that I'd be the one to take him to the vet. I tied a silk scarf around my Gollum-head and dared the mirror to say anything about it.

It didn't say a word.

“Are you up to the drive?” asked the Bear.

“You'd better believe it,” I replied.

I put Working Dog in the car and drove off. There was no way that other Black Dog was catching up with me today.

Tuesday, December 25, 2012

Getting into the egg noggin

The Freeloader's timing is always impeccable.

Christmas morning. I wake up bright and early, ready to psych myself into being cheery despite knowing it's going to be a somewhat moderated celebration. I still can't eat anything hard or fibrous- my mouth is far too tender- so we've got some nice soft tail pieces of Atlantic salmon for lunch, instead of the usual extravagant turkey roast. FFS, we spend all year growing out these amazing free-range turkeys, and we come to the one time of the year...

...oh, stop it Candy.

But I'm craving roast turkey with my special pine nut and raisin stuffing, and I ain't gettin' any.

It's hot already; the cicadas are shrilling away. I notice, as I lie there sulking about my non-existent turkey dinner, that my head feels a little itchy. I give it a bit of a rub.

And come away with more than I bargained for.

You're kidding. Today?

Tug at my fringe. More hair comes away. Not a lot; just a few wisps.

Oh. Okay. It's going to be today. Merry Christmas from the Freeloader- have some egg noggin.


Looking at the few strands of hair stuck to my fingers, I wrinkle my nose. I actually find it repellant. It's not like it's a decent hank of hair, it's just a few irritatingly loose hairs that stick to my hand and don't seem to want to shake off it. I guess I'm sweaty already. I can just imagine how this is going to develop as the day goes on.

It's breakfast time, but I seem to have lost my appetite.

The Bear wanders out to feed the bloody turkeys that I can't eat, and I decide to stop sulking and get on the Wii Fit that my brother bought me for Christmas. I opened it early; I have quite enough delayed gratification happening for one person, thank you. Like, every time I look at my scarred and unbalanced chest with distaste and think about how many months it'll be before I can have a reconstruction.

Like, every time I think about how long it'll be before my mouth doesn't feel like a budgie pooped in it and then kicked sand everywhere.

You would have laughed, watching me set up the Wii a few days back. Oh, I'd got it working alright, chemo brain and all, and I'd been pretty pleased with myself for that. But like all electronic gadgets, it was designed by someone young. Someone with 20/20 vision. I'd sworn at the remote control for at least ten minutes, convinced it was faulty, before realising it could be a good idea to put my glasses on and look more closely at the battery compartment.


(Turns batteries the other way round.)

Anyway, I'd got it going and away I went, but it was so annoying the way I'd lean to the right, and the little figure on the screen would lean to the left. What was that about? And how come it reckoned my centre of gravity was slightly off-centre to the left, when I knew I was a kilo and a half lighter on that side?

Could I be over-compensating that much?

Surely not.

I leaned more to the right, to balance myself better.

The little person on screen leaned to the left.



It takes till Christmas morning for me to realise that I have the frickin' balance board facing the wrong way.

Stop laughing.

(Turns balance board 180 degrees.)

(Moves to the right.)

(Figure on screen moves to the right.)



Once I've sorted that out minor glitch and stopped laughing at myself for being a dork, I have a ball on the Wii. Step class is kind of like dancing, which I've always loved. The jogging's an interesting intellectual battle between the machine, which keeps reminding me that I'll burn more energy if I keep a steady pace, and my burning desire to overtake my on-screen 'guide'. Hula hooping's a hoot, largely because I'm so bad at it that I end up convulsed with laughter as the virtual hoops I'm meant to catch keep clonking me on the virtual noggin.

And then there's the cycling. The Bear comes in, and ends up in paroxysms of mirth too as he watches me pranging the virtual bike at regular intervals. I am so bad at it that it's hilarious. It's nothing for me to head-butt a wall or a tree every time I turn the virtual handlebars.

Forty minutes of light to medium exercise have passed before I know it, and so has my bad mood.

Hair schmair. Don't think you've got the jump on me, Freeloader. I'll shave my fucking head. 

But first, let's have pancakes.


If only it was that easy.

I make the pancakes, which are scrumptious and easy (one egg, one cup of SR flour, one cup of milk, a pinch of salt- thank you Jamie Oliver), and then I do it- I shave my fucking head.

The shaving part isn't hard. But looking at myself afterwards- that's hard.

Egg noggin. Not happy.
I hate it.

I hate the way I look.

I hate feeling naked.

My scalp's covered in red blotches. As you would be, if you'd been poisoned and your cells weren't reproducing properly. It looks how the inside of my mouth feels.

And of course, by now it's getting on for midday, and the temperature's in the mid-thirties without a breath of refreshing breeze- so my complexion's getting red and splotchy too.


I feel like there's a spotlight shining on every wrinkle and imperfection I've ever hidden behind my curtain of hair.

There's that word again. I feel ugly.

And exposed.


I go and get the dead setter and put it on. It looks ridiculous.

I try a few of my scarves and turbans. They look stupid.

By now I'm getting suspicious of my own perceptions; I seem to be getting 100% negative feedback from the mirror, no matter what I do, which is a bit of a warning sign that I need another pair of eyes. Mine seem to have been taken over by a two-year-old who's screaming no, no, NOOOOO and stamping her little feet.

So I get brave and go looking for another human being.

I don't want to. I don't want anyone to see me like this.

The Bear's fast asleep on the couch, having his usual midday siesta. Selfishly, I make enough noise to wake him.

"I'm bald," I announce, as he blinks himself back to consciousness.

I don't even hear what he says, though I know it's kind. I'm too busy having the Meltdown I Have To Have. There are tears. There's anger. There's despair.

All the while, I'm telling myself that this is just about vanity really- and still I'm not able to get myself in hand. I'm aware that my inner spoilt toddler is in control. I'm aware that there are worse things in the world than having no hair. I totally know that I've had a privileged ride so far on this earth, looking the way I do, always knowing that I can rely on my pretty face to make an impression.

But hell, I'm used to feeling confident about my appearance, and I don't know any other way to do that confidence thing. Feeling like I want to hide is completely foreign. And bloody unwelcome.

When I stop bawling, which is about when the Bear starts and I realise I'm being a selfish prick because he has No Idea how to fix it and I'm just making him as upset as I am, I find a rueful smile for him, clean my face up a bit and start taking some pictures.

Maybe the camera can convince me that things aren't so bad.

Or not. I take maybe twenty shots, and amongst them find one I can maybe show the world. I put it on Facebook with a typed wail of despair.


The best shot I took.
Usually my friends can shake me out of my self-pity, but not this time. They keep telling me I look fine, beautiful, strong... I still can't see it.

I put another shot up, one where I think I look truly horrible. The feedback's pretty much the same. And still I think they're all barking mad, or telling polite lies.

Fuck it.

If in doubt, walk away from the mirror. The Bear had promised he'd go for a bike ride with me on Christmas Day; it's time to hold him to his promise. Lunchtime's been and gone and we're still full of pancakes. I feel as much like riding a bike as flying to the moon, but a voice in my head tells me that some more exercise could be just what the doctor ordered.

Once it's decided, I know I'll feel better as soon as I got on the bike; so it proves. I put my helmet on, and realise that I need to adjust it; hair takes up space. I feel weird, with nothing between me and the stack hat.

We fly up the road together as light rain starts to fall. My naked head does, at least, feel unbelievably cool after the stinking hot day. Soon the Bear's behaving like a teenager, as only he can, freewheeling along helmetless and shoeless, splaying his body out like a star for my amusement with neither hands nor feet on the bike (yet still staying on it, damn him- I have trouble letting go with even one hand without falling over).

We turn in at the neighbours' gate and zip down their driveway. Two emus raise their heads as we pass, then go back to grazing; a mob of kangaroos bounds away, disturbed by our laughter. It's simply good to be alive, and moving.

Fuck it, I think, when our neighbours emerge and offer champagne and a lazy chat on their balcony. Don't be so goddamn precious. Life is not about your hair. Why not.

"I'm bald," I say as warning, and take my bike helmet off.

They barely bat an eyelid. "You look exotic," says Jarvis with a grin.

Christine just hugs me. She's a woman with hair. She gets it.

And then I forget about my stupid egg noggin and lose myself in good conversation with good friends for an hour, till it's time for us to get back on the bikes and race each other home to cook our belated salmon, laughing all the way.

Jingle bells.


This morning the vain two-year-old who'd taken over my eyeballs seems exhausted by yesterday's tantrums. The view in the mirror is surprising still, but a little less confronting.

Northern Rivers
I try again. I put the dead setter on and fiddle with it for a while. It seems possible, at least, to do something with it. Even if I feel like I'm an actress, playing a part in some play I never volunteered for.

More like me...

Then I get out the hats and scarves and the fringe I bought. What the heck; let's see how many 'looks' I can create that don't make me burst out laughing straight away.

 The Joan Crawford still makes me want to giggle. But I guess it'll do, at a pinch. Basic black is always good.

The red tea cosy is a challenge, till I get creative and shove some bubble wrap inside it. (What the hell, you need something to take the place of all that hair or you look like someone stuck a pin in your noggin and let the air out.)

In the end, my look-du-jour is a bit more radical. Exotic, huh? I'll give you exotic.

I take off all the fake hair. I find an old hat, fiddle a bit, turn the brim up. I get my eyebrow pencil and draw a motif on my forehead, deciding to buy some of those stick-on jewels to decorate it next time I'm in town.

I'll give you exotic.

I go out like this to say hello to the Bear's mates. What the hell. I'd better practise this confidence stuff if I'm going to learn how to do it.

 I'm so glad I went out. They've brought me a mud crab for lunch.

Friday, December 21, 2012

The magical transformation of Dr Mumbles

My friend Vi is a spooky bitch.

"What's Dr Mumbles' real name?" she asked me sternly, after I'd described the reception I'd received at his office when I rang in considerable and chronic pain. "I'll sort him out," she promised.

From ten thousand miles away.

"Violet!" I admonished. With Violet, you just never know. Sometimes when she fixes her mind on something- well, you just never know. I didn't really want the poor fellow being laid low with the symptoms of chemo poisoning, or something. I needed him to keep treating me, even if he was being a right cow about it.

But I told her.

And honestly, Dr Mumbles did need sorting. I'd been bothering about what I was going to say to him when I saw him on Day 11, because there was going to be trouble from the Bear if Mumbles gave us another dose of Talk To The Knee. Not to mention Only Available During Scheduled Appointments.

He's got a very long fuse, my Bear, but when he blows- look out. Something would have to be said before things got out of hand.


The day had started surreally. Riding along in a chemo-daze, I'd been on top of the death adder sunning itself on the road before I realised what it was. As it struck ineffectually at my departing wheels, I'd started to register the short, lizard-like body and oddly spindly tail, which I'd all but run over. My eyes widened somewhat.

I didn't even know we had death adders up here. For the benefit of my non-Aussie friends, they're named that way for a reason. Not a snake you'd want to bite you on a remote country road, because you might well be dead before you got to the phone (let alone before the ambulance got to you). I was suddenly glad of my sturdy shoes, and my adherence to Biking Rule One.

If in doubt, pedal harder.

I was, unsurprisingly, much wider awake by the time I got to Eagle Bend, but this time when I saw something odd in the grass I chose the other option. If in doubt, stop.

I picked up the $50 note, put it in my pocket and spent the rest of the ride wondering how on earth that much money ended up lying on the ground in the middle of nowhere.

Surreal. But not a bad set of omens for the rest of the day.


The first thing that happened when we walked into Mumblesville at midday was that the receptionist spotted me, rushed over and started grovelling.

This was, um, startling.

"Candy! I'm so terribly sorry I didn't get back to you on the day you rang. I got caught up and I forgot to go through my list of messages to make sure I'd dealt with them all. Then I woke up in the middle of the night and thought oh my god, she's probably in pain again, and I felt terrible..."

Solicitously, she checked how I'd gone with Dr Rosie. Apologised again. And again. Was thrilled that the calcium seemed to have done the trick. Apologised again.

She was so obviously completely devastated by her oversight that I started to feel bad for razzing her up in the blog.

"Thank you for apologising," I said. "It makes a difference."

Choking back a regretful little sob of my own.


"Well, that was nice," I murmured to the Bear as I sat down.

"It's a good start," he growled. There was still Ground To Make Up, in his eyes, and it was Mumbles who'd be doing the walking.

Poor Bear. There he was, all dressed up in his city clothes with boots on, if you please, trapped in yet another oncologist's office on a stifling summer's day. I know I go on and on about how hard this all is on him, but unless you know the man and have watched him struggling with this like I have, it's hard to really understand.

I want you to understand.


When I was quite small, my battler parents took me to the Taronga Park Zoo for the day- an expensive and unusual treat for this little animal lover. From the whole of that day I have only one or two enduring memories. One is of the orangutans, squabbling like toddlers over the rope swing. The other, much clearer, is of the black jaguar.

Taronga's a wonderful zoo these days, with some of the best natural habitat enclosures in the world, but back then it was a maze of concrete and steel boxes. Little heed was paid to the animals' need for a familiar environment. That ignorance was expressed nowhere so baldly as in the big cats' cages.

That poor bloody jaguar. In an area no bigger than our back veranda, that creature of the wide open spaces paced back and forth, back and forth, back and forth on the concrete floor, his eyes aglow with frustration and misery. I stood watching him for perhaps half an hour, and he never missed a stride. Up and down that naked cage he marched, every muscle tensed, waiting in tightly controlled rage and despair for the moment when escape became possible.

It was torture. Torture for him. Torture for me to watch.

My man, forced to don shoes and front up for another round of Watch Your Beloved Suffer Agony and Torment, has that same look in his eyes when we head to town to see the doctor- any doctor. Out of his natural environment, trapped in a cage of misery, he goes to a place where even I can't reach him. His eyes become fevered pits of darkness; he paces, paces, and constantly looks for the door.

"He's half an hour late," observed the black jaguar, who never knows what time it is.


Thankfully, at this moment Mumbles emerged and called my name before I had to look for the tranquilliser gun. I determined to look that goddamned doctor in the eye before I walked in his door; I'd stop still if necessary, and wait till he had to look at me.

But I didn't have to wait. Dr Mumbles met my eyes at once. Smiled, even. Held his hand out to the jaguar to shake.

(Didn't get clawed. Phew.)

Violet. What did you do to him?

And so began the next surreal segment of the day. It could have been a different doctor. He was personable. He laughed. He showed genuine interest in my progress, and asked the jaguar how he was travelling too.

I started to relax then. The jaguar was still twitching suspiciously, but I was ready to accept the backflip without question. All positives gratefully received.

Soon we were deep in discussion of how better to manage the pain next time round. He raised an eyebrow about the calcium; placed more faith in anticipating that Day 5 would be shitty, and starting a pain regime on Day 4 to get the jump on it.

Whatever. I'm convinced by the calcium, but I'll be hitting the 4-hourly Panadol/Neurofen on Day 4 as well. And allowing myself an extra, but lower, dose of the Dexamethasone on Day 5.

"You get that drop-away effect when you stop all the side effect suppressants on Day 4 anyway, so that makes Day 5 worse too," he said. "Maybe just stretch it out a little longer."

His eyes were even twinkling. It occurred to me, completely irreverently, that he's actually quite hot. Who the fuck are you, I wondered, and where did you put Dr Mumbles?

Not that I cared. Dr Mumbles could stay locked in the closet in perpetuity for all I cared. Long live Dr Mellow.


I released the jaguar onto the street and persuaded it to follow me to Cafe Cappello, where it found a cool breeze that reminded it of home and succumbed to a good flat white. I fed it spoonfuls of pistachio gelato and watched the hunted look fade from its eyes. Ferdinand smiled beatifically in the depths, asking for more gelato.

No way, Ferdinand. Remember the soft tacos? I'm not falling for that one again.

As I herded the big cat back down the street to the supermarket, we passed a small Sudanese child with a cornetto ice cream, his mouth comically daubed all round with melted bliss.

"He looks like a poddy calf that's had its head in the milk bucket," quipped the jaguar to the child's mother. We all laughed.

The air became a little thinner.

I chained the jaguar's paws to a supermarket trolley and got us through my extensive Christmas grocery list as fast as I could. The pacing and growling was starting again, but dammit, this was my first post-chemo day out and about and I was going to do whatever I could before I dropped from exhaustion.

Helping put the shopping in the car, I was amazed by the transformation in my endurance. I'd gone from beached and ailing whale to close to my normal self in a mere two days. The thought of cooking for Christmas didn't give Ferdinand the deadly lurches any more, though it'd all be soft food this time round out of deference to my delicate mouth. Here it was three o'clock in the afternoon, and I hadn't collapsed in a heap.

I think I could be classed as tolerating the chemotherapy well. Dr Mellow certainly seemed to think so.


And so I seem to have made it across the Valley of Despond. Dr Mellow thinks I'll be fine from here, till round two, and then I'll be better prepared for what it throws at me. There's no real reason to think it'll get harder to cope as the rounds go on, but the unpredictable has been known to happen.

So it seems the magic and agonising Neulasta injection has done its work. Instead of Day 11 being the start of a ten day climb back to health ready for another whack in the face on Day 21, I seem to have been given something of a jump-start. Oh, I'm not 100%- of course I'm not. Today's Day 12, and my legs felt like they were made of porridge when I got on the bike.

Though maybe that was in anticipation of meeting Mr Death Adder again in my travels.

But I'm certainly feeling a lot more like me. I've started hooking my own hacked-off hair into the wig cap I made, a task that felt completely beyond me when chemo started. I'm back on some of the household chores. I'm interested in cooking again.

It seems possible to do some relatively normal physical things, like giving the Bear a hand to put a tyre back on the RTV. It seems possible to stay upright and doing things for more than an hour at a time. Perhaps I can even make the odd, tentative plan.

There is life after chemo. Even during it. Thank the lord for that. And whether Dr Mumbles was magically transformed into Dr Mellow through an effort of will at 10,000 miles distance, or whether he was simply having a bad day last time we met, really doesn't matter; I am blessed, again, to have my confidence in my doctor restored.

And now, I think I shall find out whether Ferdinand likes pho soup. And then I'm going to make a Christmas cake.

Monday, December 17, 2012

The Valley of Despond

The hair just had to go.

I'd woken up twice now with my skull tingling and throbbing. It didn't matter what I did with my locks- leave them loose, tie them up, brush them out- I was starting to feel like I wanted to tear them out of my head in handfuls. The sheer weight of my long hair was too much for the dying scalp cells.

I'd told myself I'd cut my hair on Boxing Day. "You'll have hair for Christmas, but not for New Year," Dr Mumbles had said; I thought Boxing Day would be plenty soon enough to take the initiative and steal the Freeloader's power to unnerve me.

But as with most of the best laid plans, that just isn't how things were unfolding. The pain in my bones, though less than on Day Five, continued to torment me day and night. Ferdinand rolled and sank in my guts, demanding treats and churlishly hurling them around when I complied. Seaweed crackers had him turning up his nose and shuddering. Blueberries? Meh. A spoonful of dry Milo glued him to the plughole, leaving me near retching point for the first time then sending me running to the loo.

My teeth felt three sizes too large for my gums; biting down was agony. My parched throat was making me cough, and those sudden spasms threatened to dislodge Ferdinand post-haste from his lodgings below.

Something had to give. There's only so much discomfort a body can take.

The something was always going to be my hair. It didn't feel like it was part of me any more. It had become the enemy, and I needed to cut my losses.

Getting my mind around the whole hairless look first was a little harder than making the call to arms. I tied my locks back (ouch) and played around with my scarves for a while, taking photos and assessing the results.

Nothing looked like me, of course. I should know that by now. I looked like Madam Zelda. Cross my palm with silver. 

Or, according to one kind friend on Facebook, Liz Taylor. (Flattering, if far-fetched.)

But not like me.

With a wry smile, I recalled Samantha in Sex and the City sitting in the wig shop after her chemo, hurling bitchy comments at the poor harassed salesman- till, at the end of his tether, he reminds her forcefully that it's a wig. It'll never look the same as her real hair.

Just like me, in a turban, will never look the same as me with hair.

Accept it.

(I hear you, Samantha. I don't want to accept it either.)

I tore the scarves off again and sulked on the lounge for a while. Cutting my hair in this mood could be dangerous. And regardless of how much of a bitch I felt like being, I didn't have the bottle to hack my coiffure to pieces before I warned the Bear that his long-haired princess was about to become a goblin. That would be mean.

But the sun started to go down, the man came in and observed my distress- and, bless him, put his finger on the crux of it right away.

"You have to be comfortable," he said.

So I went to the bathroom and turned myself into a punk.


The photo is infinitely flattering of the job I did (amazing what you can do with a decent photo editing program and careful posing). Seriously, I'm practically bald in some spots, and there are all these long wispy bits thrown in. I didn't care.

But I couldn't quite come at cutting my fringe off. That's not the bit that's hurting. It can wait.



The relief was immediate, but sadly didn't guarantee a decent night's sleep. The Bone Factory had other ideas. My back was screaming, my gums howling. I swallowed my Lyrica, which usually knocks me out at least for a while, and closed my eyes.

Nothing. Nothing but pain and more pain.

There's a moment in the chronic, unrelieved pain cycle where you feel like time stops. The dead of night makes a good backdrop for that. You're stranded alone in the Valley of Despond, and the walls are so steep that you know you'll never get out. Nobody can hear you scream in there. There are no answers, because you can no longer think of the questions. You're only aware of time ticking infinitely slowly, while nothing changes.

I rolled over.

Rolled back.

Sat up.

Opened the laptop.

Closed the laptop.

Lay back. Sat up.

Rocked back and forth.

Turned the fan off. Turned the fan on.

Lay back. Rolled over.

Almost woke the Bear. Tried not to. What could he do?

Sat still.


Do that routine repeatedly for six or seven hours at a stretch, and you're just about ready for committal in the morning. Because it's not six or seven hours; you know it's not. It's four and a half months in the Valley of Despond, and you've only just started.

I can't do this.


Does anybody just quit chemo, I wonder? Does anyone take their bat and their ball and their floating fragments of Freeloader and just go home? I wanted to, in the dead of last night. My self-belief was a non-event. If I wasn't so miserable I would have been furious.

I was well before this. I was doing so well.

By dawn, the rage had resolved itself into a ball of sheer resentment that my pain advice had been inadequate, again. Panadol my arse. I'd taken Panadol all night to no avail. I got on the phone to Dr Mumbles' office.

And got the run-around from his receptionist. You couldn't possibly speak to him until late this afternoon. He's not even in the office yet. I could try to catch him and call you back, but it wouldn't be until much later.

Call me back? There goes a squadron of flying pigs. I've worked with too many bulldog receptionists in my time not to recognise a steel-lined triple-bolted door when I knock on it.

I put the phone down in disgust. Poison 'em and then set 'em free, eh? No Correspondence Will Be Entered Into? Cure the body, screw the mind?

I'm probably being unfair. But being blocked by a fucking secretary when you're in severe pain does that to one.

Fuming, I resorted to Dr Rosie again. And sanity, finally, prevailed.


"Calcium supplements," she said calmly, smiling her beatific smile. "They're better than narcotics for bone pain. I found that out experimenting on myself when I broke my ribs, and I've used them successfully on many patients in different situations since then."

And prescribed the narcotics again, just in case. To keep me sane before the calcium kicks in. I took one at once, and by halfway home I was as high as a kite.

I can do this, I thought.


A few hours later, including a pleasant and much-needed nap, I had cause to remember that nothing about this journey is that easy. The Endone had made me nauseous again, and along with the calcium tablet was already making me feel tightly uncomfortable in the nether regions.

I'd have to start a whole new regime, balancing the side effects of the side effects. Maxolon for the nausea. Fibre supplements for the slow guts. More Laurel and Hardy shows, putting infinite pills into little boxes.

I sighed. Sniffed some mint while I waited for the Maxolon to kick in. And started stretching a new tightrope across the Valley of Despond.

Saturday, December 15, 2012

The Bone Factory

Day Five was beyond ghastly.

I woke early again, but not so much to the music of Ferdinand doing the idgy squidgy hula in the depths. (Though he was.) Not so much to the abrasive misery of a mouth like the Sahara and teeth that felt twice their normal size in the sockets. (Though all that was there.)

No, this time I woke to the song of every bone in my skeleton screeching in agony. The Bone Factory had started up the conveyor belts, churning out extra white cells in response to the Neulasta injection I'd given myself on Day Two. The physical effect of this had been described to me as 'like a bad case of the flu'- aching limbs, general lethargy and so on.

For me, it was nothing like the flu. It was like being stranded in someone else's body with a hefty dose of locked-in syndrome, and a barrel full of wildcats armed with poisoned syringes cavorting in my bones. I had rheumatic fever as a child, and suffered pains approaching these every time I became ill all through my childhood; perhaps this particular variety of hell has become the torture-too-far for me. 

Or perhaps it's just that I expected more of myself, that I'd endure it better. Whatever. But let's just say that I Wasn't Handling It.

I tried. Believe me, I did. I dragged myself out of bed somehow, and immediately realised that I could hardly stand up straight, let alone balance on a pushbike. But I'm a stubborn bitch. I dressed anyway, and took Velcro-dog out on the lead with me for a walk instead.

I. Will Not. 


The Freeloader.



I think I probably looked drunk. I know I was swaying all over the road. After a while I took Velcro off the lead, because I thought I might fall over him. Things were a bit blurry out there.

A lot blurry.

Maybe more exertion will help, I thought, and started doing my shoulder exercises as I walked along. Counting to 20. Trying to stay on my feet.

By the time I turned for home, my legs were jelly and my eyes weren't working properly any more. The whole world had turned into an array of bright-lit crystals. I was tripping, in more ways than one.

Home again, I crashed back into bed like a stone. 

Felt like I was dying. 

Not fast enough.


I lay there most of the day, barely lifting a limb. I tried opening the internet to distract myself, found it full of the massacre of children and my colleagues' uncomprehending pain. 

Felt the insignificance of my own fight. How little this matters, really. I am nothing in the whole scheme of things. My pain means nothing.

This is how the Freeloader gets under my skin. Any chance will do.

Give up, he wheedles. Give up.

I closed the computer.


Picked up a book. Couldn't be bothered following the plot. Threw it down again. On the floor.

Put on a DVD. Picked holes in the script. Turned it off, frowning.

Irritable. That's right. Another side effect of chemo. Irritable. Thanks for that, Freeloader.

I nibbled at the left-overs of a cold, mild curry. Rice. I want rice, murmured Ferdinand, lurching sideways.

The day stretched out, stinking hot and airless. I turned the fan to full blast and barely felt it.

This mightn't even work. It might all be for nothing.


There is, really, no other choice than to cope. What's left, if there is no coping? There's nowhere to fall. The pain just is

There's madness, I guess.

About 2pm, it occurred to me that I could try taking some Panadol. That had seemed like a stupid idea earlier. Panadol for bone pain? Nah. Like trying to kill an elephant with a push-pin.

I took some anyway, and it helped- a little. Enough to stop me descending to tears. Note to self: medicate. Even if you think it's stupid, or useless, medicate. You need all the help you can get.

I see that I need reminders about small, common-sense things. I can no longer rely on my brain to tell me that pain = need for pain relief, pure and simple. Taking deep breaths now and then during the day, I realised at once that this simple act also relieves the pain a little, yet forgot immediately to keep doing it. 

I slept a little. Woke feeling like my scar was no longer part of me, and alive with fire ants again.


My morning routine had been blunderbussed by the pain and lethargy. Somewhere at the back of my mind, the thought stirred that cool water might feel pleasant. It took me till 4.30pm to drag myself to the shower, where I stood for too long, letting precious water run through my hair and down my back, not caring about the waste.


I dropped onto the outdoor couch with my lotion, still wet. Did my massage sitting down. Ineffectively, probably. I tried.

It took the fire ants away.

5pm, and I'm ready for the day.


A sudden outburst of chaos at the turkey compound. The dingo pup had returned, and I discovered once more exactly what I could do when I had to. Burst out the front door, set Velcro to chasing him off, went out and looked for casualties. 

Found the Bear way down the back of the property. Walked back with him, feeling like I was levitating, held to earth only by his strong hand on my arm.

Got him to put down the poor destroyed baby with the broken wing.

A little self-belief returned then. I pulled out the chopping board, convinced I could at least prepare some vegies for dinner. Whether I could cook or eat them was a matter for later on.

Realised my legs were not cooperating. Again.

This is not me. I never sit down to cook.

I sat down, and chopped at the table. You need to bend. Listen to your body. 

The Bear came in and we nearly rowed about how to cut and cook the meat, till I remembered: side effect. Irritable

Shut up, Candy. He's exhausted. He's doing his best. It's YOU.

Somehow between us, we got a meal on the table without coming to tears or blows. Somehow I managed to eat a little, though the meat no longer appealed. 

The sun went down, and my body felt cool and smooth from the late shower.

Day Five. Over.


Today I got up and rode to Eagle Bend again, with more relief than triumph.

Thursday, December 13, 2012

Ferdinand the Fish

They reckon the first four days are the worst. After chemo, I mean. If that's true, I'm doing okay. I've hit day four, and so far I'm doing fine.

(She said, chewing on another dry rice cracker.)

Mind you, another message I keep getting is that everyone's different. You can't predict how any one body will respond to being poisoned. So maybe I will regret those words by this afternoon.

Or tonight.

Or next week, when my blood count drops to 'buggered', or next cycle when I have to go through it all again.

But so far, so good.


My habit of personifying my tormentors continues. The dead weight that appeared at the bottom of my stomach on the second morning had been aptly christened by 3.30am on the fourth, when it woke me complaining yet again of Unfair Neglect.

Ferdinand the Fermenting Fish sinks sickeningly to the bottom if I let my stomach empty completely. As you do, during the night. There he lies, nauseating, slimy and heavy, and starts to let off bubbles of rancid fumes which rise lethargically into my windpipe.


I have to keep refloating him, coating him. Coaxing him to behave with little morsels. Too much water at once, and he turns over and threatens to burst upwards; too little, and he's hard to dislodge from the drain.

He's not part of me. He doesn't seem to like ginger, which has always rescued me from dodgy tummies before. He likes blueberries, which have never really appealed till now. He's a stranger, another invader in my being.

I am not a weak-bellied person. But Ferdinand is trying his damnedest to make me so.

Watermelon, cubed and stored in the freezer, helps for a while. Seaweed rice crackers he consumes avidly. Yoghurt gives him a nice slippery slidey surface, as do those little pots of Chinese fruit jelly you can pop in children's lunchboxes- guava, lychee, kiwi fruit, mango. Honeydew, even.

Not too much at a time. Just enough to float him again. It's a balancing act, constantly. Even at 3.30 am.

Damn you, fishy. Let me sleep. I'm running low on red cells here.


The very lethargy of Ferdinand should have warned me what to expect from the rest of my digestive tract. Rather than the largesse shooting through in any and all directions as though from your average Bondi tram after Mardi Gras, everything's grinding to a halt. Let's just say I selected the Sultana Bran at breakfast, after discovering how cold you can get sitting in the bathroom for half an hour at 4am.

I warmed myself up afterwards by treating myself to an early bicarb soda mouthwash. Yum, yum. On day two I'd made the mistake of flossing before my salty-tasting treat, and the agony was unbelievable. My teeth and gums ached for an hour. Come to that, they're still tender; when I look into my crystal ball I see a future of mince and soup.

Yum, yum.

So many little schedules to dove-tail, eating up the day in tiny bites and screwing you over if you get it wrong. Dental hygiene, to prevent decay and infection: check. Bicarb-wash care of delicate, dying-cell chemo mouth: check.

Done at the same trip to the sink, to save time: shriek.


By the time I got back to bed, of course, I'd woken the Bear. We'd not been lying there long, holding hands and listening to the dawn symphony, when the first movement of Carol of the Bungy Birds also descended to piercing shrieks. He shot out of bed to find a dingo pup investigating the turkeys, and the remains of yet another hen out the front. Just as cancer has no respect for daily life, daily life has no respect for cancer. Together, they're wearing down my man as much as Ferdinand is leaning on me.

I started getting concerned about the Bear again yesterday morning, when the eyes went dark. He had all the signs of needing to download, yet the breast care nurse- the lovely Monica, who somehow managed to elicit his trust and most of his story in a single visit last time round- had been and gone without him offering up a single crumb of what was troubling him. I couldn't even draw him to the table with us.

By nightfall, when he'd been to one end of our 45 km road for fuel and the other end for turkey scraps (with a little bull-rustling and fence-fixing stirred in the middle), he'd started to crack. He's simply trying to do everything alone, and it's not humanly possible. At home, the fallen tree that nearly killed him is still lying across the gate and blocking access to the back. The Parramatta grass is taking over the lawn now the heat's here, choking us both with its flamboyant allergens. Chicks keep hatching and needing new, dry beds. The lawn needs a mow. The dishes pile up, or they would have done if he hadn't spent the whole time Monica was here washing them, his back turned to our tentatively hopeful conversation.

I am doing well, she thinks. Looking good. Coping well. I think so too. As long as you only think in the context of fighting the Freeloader.

As for real life, I do what I can. We've cooked together each night, the Bear keeping a sharp eye on me lest the smells floor me before I have a chance to eat. Last night I girded my loins, or rather my nose, and did it alone before he got back from the far end of the road. I can pretty much cook in my sleep, which is just as well. Fed the dogs, too. Put the turkeys away.

But it was a struggle to move my limbs at all by that time of night.

One day at a time.


'Doing what I can,' today, did not include attending my son's PhD graduation. I'd chided him for not even telling me about his Bachelor's or Honours ceremonies during the last many years of study, but his eyes were fixed further ahead from the start.

"Meh, wait for the big one, Mum. That's the only one that matters," he'd responded, with his usual casual irreverence for occasion.

Well, the big one came and went this morning, while I sat at the table trying to work out whether I had enough spoons left after my bike ride, exercises, shower and lymph massage to wash up before I went back to bed for a nap.

I didn't. To even think of travelling to Sydney for today would have been insane.

Thanks for that, Freeloader. I owe you one. You just try to keep me in bed when it's time for my ride tomorrow. And the next day, and the next, and the next.


And so now I'm sitting up in bed at half past two in the afternoon, wishing I could be out on the ride-on fixing the lawn but simply lacking in the spoons to do it. The Bear's out in the burning sun with no shirt on (you can't tell him), chasing the shade with the poison spray, killing every clump of noxious weed he can find. Velcro-dog's lying on the bed with me, pushing every other living creature away with his nose or his substantial arse if they get to close to His Mummy. Snapping at March flies if they dare try to bite me.

The satay noodles Ferdinand asked for at lunch are swirling dangerously, like seaweed in the depths. No spicy food, said the book. Satay noodles, said Ferdinand.

Listen to your body.


I feel useless.

Day four. I'm doing well. I'm doing well.

Tuesday, December 11, 2012

Getting back on the bike

I woke up on the First Day of Chemo (note seasonal theme) determined to be proactive.

Regular exercise will play an important part in your statistical chances of survival, say the sages. Good then.

I know it in my head. I've done my homework. Right now, it will help reduce oedema. (God knows I have enough of a challenge already when it comes to puffy arm syndrome, given that I'm minus the left-hand lymph glands.)

It will help fight off depression. (And I've had problems with depression for most of my life.)

It will help prevent weight gain. (Don't mention my Polynesian ancestry.)

It will help sustain my mental acuity. (See 'Candy's greatest fears about chemo'.)

And so on. It's a no-brainer. Pardon the pun.

Only one small issue to deal with: I just love organised exercise. I love it the way fish love riding bicycles. I love it the way I love jamming a splinter under my thumbnail. Hey, I was the one who selected three languages as electives at high school, because it meant I would miss PE- which, under the eagle eye of the aptly named Miss Butcher, meant forty minutes or so of standing in lines and being yelled at if you weren't able to climb a knotted rope when the whistle blew. YOU get knotted, I'd say, as I fell off again.

Under my breath, of course. To say such things aloud meant instant detention beyond school hours, when I had far more important and creative fish to fry. Piano practice. Poetry writing. Crafts. Examining and drawing the petal structure of wildflowers, or painting my favourite composers' faces on my bedroom walls.

So as you see, I've had to come late to moderate exertion. But now that I live on a dead quiet, level country road, the obvious choice for effective, low-impact aerobic exercise is cycling.

Cycling. Oh my dear lord. I am a fish, remember? Or at least partly. Moon in Pisces is enough. Fine motor skills? Superb. Gross motor skills? Um... pass.


My first attempt to ride a bicycle was at about 10 years of age, when my best friend put me on her bike without explanation and gave me a push down the dead-end road. When I say 'dead-end', perhaps I should explain that it 'ended' in a steep drop into Kuring-gai National Park.

That friend's a teacher these days, and a good one. I'm sure she's learned to show her students where the brakes are by now. Me? I have no idea how I avoided going over the edge, but it ended in equal proportions of gravel rash and indignity.

Amazingly, I didn't break anything (not even the bike), but it kept me away from those danged two-wheeled contraptions until ten years later, when I was going out with Mark- a champion water-skier and lifelong physical activity disciple.

He took me to Rottnest Island, didn't he? I loved everything about it except the transport arrangements- it was ride a bike, or walk and see about a quarter of the attractions before the boat left for home. Fortunately Mark proved a good teacher, full of faith in me, and I did well- right up till the moment we crossed a narrow causeway in single file, and self-fulfilling prophecy took over. Fear of going off the edge sent me off the edge.

(There's a lesson there.)

That error of judgment sent me down a drop that seemed like three metres, but was probably only one. Pity about the large, jagged rocks all the way down to the bottom. This time I hurt both the bike and myself; I was black and blue for weeks, and poor Mark was wracked by guilty pains too.

Quite unnecessary, of course; I am an expert at looking confident when I'm not, and at going on when I should stop. We got over it. He's still a supportive friend today, god love him.

My ex-husband had a go at teaching me, too. That ended in tears with me banging into a rather exclusive parked car in a rather exclusive street of a rather exclusive North Shore suburb. (Not a good look; fortunately the damage was mostly to my ego and my then-husband's faith in me.) But this time we persisted, keeping to parklands rather than streets, and I kind of got the hang of it.

Cycling rule 1: If in doubt, pedal harder or stop. That's the only decision to make.

Jools provided, yet again, the kick in the arse I needed to get me back on the bike once I moved up here. Her own health issues mean that cycling has become a passion for her, and she managed to transmit a little of the joy to me. We acquired two bikes so we could go up and down the road together when she came to stay, and she taught me a few more rules.

Cycling rule 2: Keep the wheel straight when you're starting, or going through gravel.

So I've only had one tumble since then. Unfortunately, it cost me over $400, given that I had my almost-new laptop in my bag at the time (don't ask- I offer you only two words: 'overconfidence' and 'idiocy'). I shall not relay the curses that emanated from my sweet lips when I opened it up in dread and discovered that I'd shattered the screen.

So getting back on the bike now, alone, for the first time since my diagnosis required something of an act of faith. (And a bit of support from the Bear, who managed to get the bike working smoothly again after some months of neglect.) But this is war. No half measures. I was going to get my blood moving around my body before the poison went in and made me sluggish and gluey inside.

It was The Best Thing I could have done for myself. I, the Hater of Exertion, say that without hesitation. I pushed myself just hard enough to get to Eagle Bend, but not so hard that I made my lymphy arm any worse. A few fearful restrictions are probably just what I need to stop me overdoing it, because while I'm not a particularly competitive person against others, I'm a ratbag when it comes to competing against myself.

Now it's a matter of balancing the fears. Fear of lymphoedema, vs fear of losing my mind. Or my life.

Yep, it works for me. I am determined to live.


A romantic diversion, for those who'd like it amongst all this talk of death, poison and (worst of all) sweat.

Eagle Bend. As one of my blog readers pointed out, it's such an evocative name. Yet it describes a rather ordinary-looking right-angle bend in the middle of our long, long road.

That's not its Official Title, you see. Nobody calls it that except me, the Bear, Jools. Eagles are part of the Bear's personal mythology, and so have become part of mine. Along with his dogs, eagles helped save his sanity when he lost his last beloved to breast cancer.

And when we first came up here, eight years later, an eagle appeared in front of the car as we drove towards our home, soaring low and smooth through the archway of forest and then rising to come to rest on a branch of a dead tree at that sharp but nondescript bend.

It seemed like a sign. Leading us to safety, perhaps, from the terrible times that had troubled us so deeply.

Eagle Bend it is, no matter what the maps tell you.


Back from my ride, I got myself through the morning routine and tried to make myself look less like a beast bound for the slaughterhouse. Feel like a victim, become a victim. But I'd rejected the Lyrica the night before, fearful that it might conflict with the poisons about to be pumped through me, and had had less than two hours' sleep. I looked like shit.

Gotta love mineral powder foundation. But taking the terror out of my eyes was a little harder than removing the dark circles.


We parked in a space clearly labelled RESERVED. Like we cared. I Have Cancer. There was nowhere else, and I wasn't leaving the Bear stranded looking for non-existent parking after dropping me off; he was having enough coping issues already. If I was a rabbit in the headlights, he was a sweet puppy in pain. What a pair.

We pulled it together by the time we got upstairs to the St Vinnie's chemo suite. Front-of-house Donna, who'd already introduced herself on the phone, greeted me warmly at the door- but without the cloying over-familiarity of the Sultana of Turbana. (It's a fine line; well-walked, Donna.)

The explanation of what was about to happen was brilliant, complete with hand-drawn illustrations, and made a mockery of anything I'd been given before (thank you Margaret). The icing on the cake was being asked if I minded the student nurse watching my procedures.

"Of course not. I've been a teacher of one sort or another for over 30 years," I replied.

Margaret's surprise seemed genuine. "Thirty years? You don't look old enough to have thirty years' experience."

"I'm 56. How old did you think I was?"

"Oh, late thirties, early forties..."

God, I love my mineral powder. And my Polynesian skin, even if it did come with Extra Hip-lard and F-cups.


There Was Paperwork. Pre-emptive anti-nausea medication. And more paperwork.

More explanations. More paperwork.

More waiting, while the anti-nausea meds took hold.

Despite the local anaesthetic swabs, there was a painful jab into my Port-a-cath, the fixed line almost straight to my heart that Dr Goodguy put in so expertly during the mastectomy operation. I know he put it in expertly, because later on the Doxorubicin (which has similar properties to battery acid when applied to anything but the inside of a vein) didn't turn me into an emergency case due to internal leakage.

Margaret pushed it in with what looked like a horse needle, ever so slowly, waiting for me to scream in pain if it leaked and burned. It didn't. Go you Good Guy.

Before the Doxorubicin, there was saline. (A Lot of saline.) After that, there was Taxotere. And finally, Cyclophosphamide. None of it hurt. None of it made me sick.

In between there was more saline. And more waiting. And Lovely Liz bearing fresh sandwiches and caramel tart and soup and green tea.

Next to me was a woman who'd lost her hair in a week. (I pulled at my own locks this morning, but they were still firmly in place.)

She was replaced by an elderly gentleman whose wife died two weeks ago. (I counted my blessings.)

Some of my fellow-travellers had the Bad Wig thing going on. (I felt better about Truvy and her dead setter.)

It took five hours. I handled it. Look.

I haven't thrown up once. But I was so absolutely stuffed by the time I got home, I managed to organise a complete pill pack for the next three days in a manner worthy of Laurel and Hardy (think flying capsules shooting across the table and having to be retrieved from under the furniture; repeat till pill pack is done).

And then, after all that, I managed to forget to take my late night dose of Dexamethasone.

Pride comes before a fall. I'd cooked and eaten a 50-50 plate of Atlantic salmon and steamed broccoli without flinching; look at me, no nausea at all! I am Chemo-Woman, hear me roar!

And gone straight to bed.


Two a.m. Wake-up with desperate need to pee. (All that saline has to go somewhere, you know.)

Still awake at 4am, feeling nauseated for the first time.

Fuck. If this is what it's like with the extra anti-nausea meds they gave me, how will I go without them?


Oh fuck. Did I take the last lot of meds?

(Goes through previous night in mind.)

(Visual Learner can NOT see open cover on late-night pills in memory scanner.)

(Gets out of bed.)


(Takes tablets meant for 10pm at 4.15am.)

(Spends next hour alternately peeing and worrying about when and if to take the morning dose, and how bad she'll feel if she doesn't.)

(Goes to sleep around 5am, determining to call hospital and ask.)

Sorted it.


I am determined to live.

I got up at about 7am, despite the excruciating previous few hours. It took a couple of my spoons. But I was getting on that bike if it killed me. Because not getting on it might kill me, in a less than figurative way.

With each pump of the pedals I think of the poison pushing into tiny blood vessels, picking off the enemy one by one as my father did once at an enemy machine gun post.

Find them. Kill them.

I come home feeling better than when I set out. I Am Fine.

So far.



A final word: more about eagles, if you have the appetite and like poetry. I wrote this for the Bear before we were lovers, after he told me how he'd been evicted from their rental house straight after his Narelle had died. He'd ended up living alone, high on a mountainside in somebody's derelict shed, too broke to even retrieve her ashes from the funeral home so he could have closure.

(Breast cancer is a bitch on the finances. Believe me, I know.)

When I showed the poem to him, he cried.

"It's like you were there," he said.


From Harvey’s Shed

Your fugue to the wild crown of Middle Brother
made the hidebound flinch, some fear of madness
filling their empty hearts with vicious stones
to sling at you in flight. Stripped at the last
of all but ruthless freedom, still your being
found a breath of peace in the brutal congruence
of owning only pain. Her dogs surged upwards
to the sky where she must be. Pulled in their wake
or by the monstrous vacuum of her absence,
blindly you found calm. 

                                    From Harvey’s shed
you read the clouds like eulogies, heard lays
of bird to fallen timber, felt the stars
drum your loss upon the taut skin of night,
moved to the cycle of light. Below, the river
shivered with dissent, while blank-faced strangers
tramped the fading gardens that you’d tended.

Above, the eagles went about the business
of survival, plunged unconscious of their beauty
from sky to valley floor, soared side by side,
paired daggers for your heart. From your eyrie
you learned the rules of exile and of grief,
a waning spirit caught in the crushing winter
behind her last migration. The dark rushed in.

Inside, the dogs took over, watched the door,
climbed onto the table, ever scanning
the emptiness for signs, their silent howling
fit company. You took them in your arms.
The days stretched blank upon a vast horizon
live with the pulsing empathy of wings.

* * * * * * * 

In the shivering void of night the hot coals winked
like demons. In the chasms of your waking 
there coiled in wait the spectre of the ferryman 
who stood before the casket, dark suit dangling 
like seaweed in the Styx. Once more he sought of you 
three thousand ducats for a pound of ashes, 
a single dollar more to gild his pocket. 
He laughed as you turned away. Robbed of her shadow, 
all traces of her being, drowned with rage 
against the black machinery of the system, 
you churned the papers over till the fate lines 
all pointed back to earth. 

                                     And so you stall now
and fall to ground amid our scuttling half-lives, 
fluttering weary wings against our windows 
to seek her ransom. Bruised by the glassy world, 
cage bird to the heartless, still you gaze 
as if from those precious heights, your eyes mandalas 
lit by a gentle candle for her peace. 
I see the pale flame flicker and I tremble. 
Let it go now. Ashes are just ashes, 
slipstream of the soul, the choking dustcloud 
hanging in the path behind our wheels. 
Toss them to the wind. She is not there. 
From Harvey’s shed you saw an eagle lunge 
towards the growing light like a dying woman. 


Monday, December 10, 2012

'Twas the night before Chemo...

I've taken my Dexamethasone. I've had my blood test. I've freshened up my nail polish. I've bought the Maxolon, the Imodium, the thermometer, the bicarb soda, the wig, the wig stand, the turbans, the scarves, the fake fringe, the forty thousand varieties of food I'm guessing mightn't offend me in times of pukiness (that's not a word, you say? It is now- don't argue, I Have Cancer), the meal replacement in case none of them works...

...and so ad infinitum.

I've written the list of Things Not To Forget tomorrow. More tablets. Questions to ask. Books to read. iPod. Computer and DVDs. Jacket in case it's frickin' freezing in there.

The only thing left is to reframe the whole thing. Make it look less like "I think I'll go get poisoned and feel like crap for four and a half months", and more like "Let's get this war on the road, baby".

Because it is a war. Like I said to Dr Goodguy, my family doesn't survive cancer diagnoses. I plan to change that. Starting tomorrow.


My Real Hair Wig arrived today, curled up in its net like a dead puppy. Perhaps a red setter with a bad dye job. Describing it to my son by Gmail chat, I unleashed a barrage of Indian cuisine puns which left us both on the floor by our chairs, merely by mentioning that the streaks resembled tandoori smears. (I exaggerate. A little.)

At least it felt nice to pat. I let it out and started trying to bring it back to life; all the way from Hong Kong flat packed, and you'd be having a bad hair day too.

Meet Truvy and the dead setter.
 I think she's been embalmed,
but she maybe doesn't know it yet.
Let's not disillusion her, hey?
They make a great pair.
It didn't look anything like the one in the picture, of course. There was a disclaimer on the bottom of that page telling me the wig in the picture had been 'trimmed and styled'. Riiiiiiiiight. So I put it on Truvy (yes I know, she doesn't look anything like Dolly Parton in 'Steel Magnolias', but once something names itself in my head, that's it) and set about trimming the fringe and taming the curls, which seemed to be having a severe attack of ADHD- all over the room in no particular order, and awfully hard to bring back to their place and keep there.

The dead setter responded well to a sharp pair of scissors and low heat on the blow drier, especially once I realised that the only way to do this was to face Truvy to the mirror and look at myself and her in the same orientation. I straightened the crown a bit, puffed it up a little by blowing it the wrong way, gave it a good combing, parted it on the right side.

Not bad. Hey, it's exactly the same length as my hair, and it's curly. How much more could I ask for? (For less than $300 delivered?)

By the time the Bear arrived home, I was quite pleased with myself and quickly put it on to show him; I'd tamed it into something that vaguely resembled how I used to look the time I dyed my hair really, really dark brown when I was about thirty.

Sadly this error of judgement was well before I met the Bear. He took one look at me and cracked up laughing.

That wasn't the result I wanted, but on the Night Before Chemo it did well enough. It inspired me to further experiments; a loose pony tail with a few long curls hanging out of a lurid headband in front of my ears, and it was Back to the Sixties time. Joan Baez eat your heart out. Seriously, all I needed was a pair of earrings made out of ping pong balls and a guitar, and I was there.

By this time the Bear was having convulsions on the kitchen floor, and I wasn't much better. He begged me to put the damn thing away before he gave himself a hernia.

So the wig's still a bit of a work in progress, but at least the feel of it on my face doesn't turn me into a gibbering wreck. It will do. I can make something of it, particularly with a bit of creative styling and the odd headband or scarf. That's thing about real hair wigs- you can style them. With the fake ones, what you see is what you get.

(Like, an echidna on your head.)


In between my blood test and my dental appointment today (hurrah! No more dental appointments for six months), I found myself back at Cafe Cappello. The nice thing about having Centrelink come to the party is that I don't have to choose between food that's bad for me and food that's just bad when I'm in town at lunchtime; I can spend the extra bucks without worrying so much that I'm going to regret it later.

They've come to know me there. I told the girl behind the counter it was my Last Supper, and we got chatting; as you do, when you're inspired to be up front about your illness, instead of shoving it in the back drawer and trying to pretend it's not happening. (Believe me, sometimes the temptation is there.)

Mostly, people don't run away once they realise that you're cool with talking about it. Mostly, people are wonderful about it.

So I told her I was, by turns, belligerent and fucking terrified. She totally got that. I told her that tomorrow was about sending in three different divisions of the army; hit 'em hard, hit 'em early, take no prisoners. When I look at it like that, it's easier to think about being poisoned without throwing up prematurely.

I told her that the stuff people say about cancer making you look at the whole world differently- you know that touchy-feely crap almost everyone who's had cancer ends up spouting? Yeah, that. Sunshine and fucking fairy floss everywhere- well actually, I told her, it's true.

I told her how I was walking down the street the other day- the day I blogged about, where I was just sooooo happy to be out by myself- and I was grinning my silly head off. And I was surrounded by all these miserable, frowning sods who'd let their Christmas spirit turn into a fermenting vat of rage, and I just wanted to yell "FFS, I have cancer and I can smile. What the fuck is wrong with you?"

Because they just didn't get it. They just didn't get that wandering around the shops is a privilege. They've never had that choice taken away from them. I see good stuff everywhere, as well as the terrifying stuff. And that's the honest truth.

The girl in the cafe got that, too. She's a champ. She's not scared to talk about stuff that's big, and real. I like that.


Coming home, I kept thinking about the war. And how the Freeloader, for all his bastardry and terror tactics, has actually given me an unexpected gift. See, this blog has been the greatest gift I've been given in a very long time. For a creative person like me to have something as huge and important as this to write about- that is a privilege.

I guess I feel like Picasso did, when he was commissioned to paint Guernica. Anyone can write a bland list of what happened at a terrible time. A historian can write a book about what happened in Guernica, just as a doctor can tell you what happens when you have cancer. But for me to have an opportunity to turn something life-changing, something that affects thousands and thousands of people, into art- to try to go beyond the facts, and let people actually feel what happened, to see the pictures behind the pictures and make connections like they were there- that is the ultimate challenge.

That is a privilege.


So one of the things that keeps me floating is knowing that I have the deep, strong joy ahead of me of shaping the words about the experience, of telling you what it's really like to have chemo.

Or rather, what it was like for me; I don't claim to be representative of everyone. My mother was rendered almost catatonic at times by the nausea. My Bear's partner went into a diabetic coma. Neither of those reactions is typical. Another of life's mysteries is about to be revealed; how will my body react? How will my soul cope? Am I strong enough? Will I be reduced to a puddle of desperation on the floor?

Last chance to see... me looking
like ME. For a while.
Tomorrow, as they send in the navy for the first hour, the ground troops for the second, the air force for the third, I'll be trying to play Generals. I imagine myself calling those bags of poison to attention and shouting "Get in there and take no prisoners. Yes, I know, collateral damage, blah blah blah. I don't care. Take no prisoners. Get in there, do what you have to do, and we'll get you out of here as quickly as we can."

That's when I'm not shitting myself in anticipation. I'll be using all the analogies in the world to help myself through this crap. (And I use the word advisedly.) I'll try to be graceful and strong, but I'll try to be realistic too. I'll try to be a squeaky wheel when I need to.

Remember, Candy: this is a privilege. Few artists can make something worthwhile out of unchallenged joy. We remember Guernica much more readily than we remember Child with Dove.  Joyful art becomes wallpaper; unchallenged joy leaves the artist with nothing of great import to say.

I don't want to leave just wallpaper behind me.

Here we go. Wish me luck. Awooga! Awooga! Diving! Diving!

Thursday, December 6, 2012

Communication breakdown

Well, my pre-chemo heart scan today had all the hallmarks of a complete balls-up. A right-royal, rollicking stuff-up. And I wouldn't have missed it for the world.

The punch line rocks.


If the cancer doesn't get you, the travelling will. It was hard leaving home today. I'd sat bolt upright at half past two in the morning, with my sinuses exploding in pain thanks to hay fever (oh, the joys of the Bungy summer). I was completely convinced it was morning. I was also in agony, and two Panadols took their time helping me out.

Then, of course, I had trouble going back to sleep; that was the Freeloader's cue to turn up and start whispering unpleasant messages in my ear about green-faced, nauseated, bald women with khaki rings around their eyes. And severe sinus pain to go with the nausea, vomiting, diarrhoea and general misery.

Fuck off, Freeloader. 

So I was dead tired. And then when I finally dragged myself out of bed, our next door neighbour turned up; he's home for a flying visit, the first since I was diagnosed. He's a good mate. I really just wanted to hang out and chat.

No, no, no. You Have Cancer. Your life is no longer your own. Get in the shower, do the exercises, do the massage, get dressed.

Spend half an hour panicking, because you have McFlurry brains and can't find the heart scan referral. 

(Oh, there it is. Right where I thought it was. But I didn't see it the first time.)

Get in the bloody car. Off you go.

Back I trudged to visit my old mate Hawkeye, the sandwich-press-blender-thingy in the Radiology Department. I don't even get lost any more in that hospital. It's a strange amalgamation of old building and new extension, with odd disorientating angles and a gazillion doors and staircases in unexpected places. I spent the first few weeks of my journey turning in wrong directions and losing the exit- but two months into my ride on the Cancer Express, I reckon I could find Radiology blindfolded.

It was the same girl behind the desk, the one who wanted to know about giving blood last time because She Has Cancer too. She was as chirpy as ever, despite the black nail polish, thinning hair and wan complexion. She's clearly a little ahead of me, well on the way to the khaki ghoul-eyes.

But she's still standing. Still working, even. Good on you, girl.

On the other side of the door, my sweetie from last time awaited too. We exchanged grins. I realised how much better I feel now than last time I was here. Knowing how sick you are is everything. No more nasty surprises- just deal with it.

Much easier.

So after two injections with a half-hour wait between them, the newly-radioactive me took off the necklaces and the lovely new silk scarf I made yesterday and lay down fully clothed on Hawkeye's loading device, ready to be shot down the tunnel. Or whatever.

Sweetie had been joined by Miss Brusque, who seemed to be pulling rank a little. I was a little surprised that the jewellery was all they wanted off in terms of a strip-tease, but hey, they're the experts. I did what I was asked.

Picture One required eight minutes of lying stock-still on my back. I counted to sixty eight times, aware of the discomfort in my left arm increasing by the second. It doesn't like staying still.


"Now for this next one, we need this arm above your head," said Miss Brusque, grabbing my left arm and attempting to rearrange it.

"WHOA!" I yelped. "I've just had a mastectomy over there."

Hello, please read the notes. People with mastectomies don't generally like having their arm yanked upwards. Thank you.

Eventually we reached a compromise. The blender whirred. The seconds counted down for Picture Two; another eight minutes of increasing discomfort.

Some three minutes into the count, Miss Brusque returned unexpectedly and stopped the machine.

"Are you wearing some sort of chain round your neck?" she accused.

"No," I said. "I took them all off."

"Oh. Excuse me."

She disappeared.


"Have you had any chest surgery?"

Read my lips. I'll say it slowly.

"I. Have. Had. A. Mastectomy."

"Apart from that," she said impatiently.

Oh right, excuse me for not being psychic.


"Is there any other metal in your clothing?"

I raised an eyebrow. Hello, you didn't ask me to take my bra off, but it's not underwired. And all bras have hooks.

"Not that I can think of."

Then I remembered: I'd reshaped the tubby teddy with bobby pins, to make it actually look the same shape as a breast before I stuffed it.

"There might be a bobby pin or two," I said guiltily.

"Hrmph. That wouldn't do it."

She huffed off outside again, leaving me wondering if they'd suddenly discovered some new and terrible tumour on my heart.

Huffed in again.

"Can you take off everything from the waist up and put this gown on." It wasn't a question. "We're going to have to start again."

Um, whose fault is that?

The rest of the test proceded to plan. I survived three more eight minute bouts of agony to my arm, got myself dressed, paid a stupid amount of money to the pale girl at the desk and was halfway home before I realised what had happened.

And burst into fits of laughter, rendering me a hazard to oncoming traffic.


Dolly Parton.

Whistler's Mother.

Gentle reader, I put a rock in my prosthesis.