Wednesday, May 29, 2013

Facebook can break your heart

This post is dedicated to my friend Lyn Wemyss, with love.


My Bear doesn't understand Facebook.

"How the fuck can you be friends with someone you've never eyeballed?" he splutters, as I try to explain who I'm talking to and why.

He's an old-fashioned guy. And he's not a reader. He'd rather be outside doing something practical, or- better yet- having a beer with his mates, eyeball to eyeball. The concept of being emotionally invested in the welfare of someone you've never met, someone only known via the written word, is completely foreign to him.

Yet these invisible friends of mine, the ones he can't quite believe are real, have often been my lifeline. For someone who lives miles from anywhere and a day or two's drive from her real-life friends and family, the connections made through that little black modem are crucial. I have Facebook friends all over the world who've helped me maintain my sanity through one crisis or another.

Mostly, they share a profession with me. Bless those smart, savvy and hilarious Early Childhood workers who've brightened my darkest days with their wit and wisdom. Recently, thanks to the Freeloader, they've been joined by a group of women I've never met- women who have the dubious honour of sharing my path through the daily horrors of breast cancer.

I would probably pass these women in the street without recognising them, yet I care deeply, sincerely, for many of them.

When they disappear from my feed for a few days, I worry. When they reappear, I rejoice. When they're frightened or confused, I'll happily spend hours talking things through with them- and they'll do the same for me.

Which brings me to my friend Lyn.


The trouble with caring about a lot of women who have cancer is that some of them, inevitably, are not going to make it. They're going to die, and you're going to have a front row seat.

Yep, Facebook has ways of breaking your heart that you'd never dreamed of when you joined up.

And Lyn, damn it to hell, is going to die. She's the first woman who ever reached out her virtual hand to me when I was diagnosed. She followed my blog almost from the start, and met me on my Facebook page after I'd run screaming from the censorious breast cancer forum where we'd met.

See, my truth is too loud for some people. I call it like I see it, because I honestly believe that you have to go through the hard stuff with your eyes and ears open if you want to come out the other end without permanent emotional damage.

But there are plenty of women who would rather press the mute button on the reality of cancer. They'd looked at my forum posts, shoved their fingers in their virtual ears and started singing "LA LA LA LA LA, I CAN'T HEAR YOU."

Lyn isn't like that. She scorns ear plugs. She's always listened to my truth; she's liked my frankness.

I soon found that we had much in common beyond the nature of our illnesses. Like me, she'd christened her tumour and given her story a Facebook page. 'Lucy the Lump', with its little pink icon, was soon gracing my feed every day or two with a thoroughly engaging progress report that never ducked the issue. Like mine, her truth was always there on public display, no matter how awkward or unpalatable.

That icon popped up on my Fighting the Freeloader page, too, nearly every day. Lucy or Lyn seemed to be there almost all the time, balancing my misery or hope or fear with wisdom, experience, clarity.

And like me, she spiced her comments with wild humour, no matter how dire the situation.

With Lyn and Lucy around, no dilemma of mine has seemed too grim for too long. I'll post some miserable comment, and sure enough, up pops a little smiling face or that pink icon with an answer that's either practical and reassuring, or the verbal equivalent of a Pythonesque Morris Dance.

Or both.

Mostly, I end up giggling and wiping virtual mackerel scales off my face.

Lyn is living proof that the Theory of Positivity is a load of crap. You can't save yourself from cancer by thinking only positive thoughts. If that was the case, she'd be the one who was going to live and I'd be the one who was going to die. All the way through chemo, I seemed to be scraping my belly over hot coals for a week or more- but no matter how grim things got for Lyn, she'd somehow come up with a post that had her friends in stitches. Months ago, I knew that the hormone treatment was screwing her to the ground with as much genteel grace as a Makita hammer drill putting a plughole into concrete; yet still the one-liners and slapstick stories popped up in my daily feed.

And all the while, every single post of Lucy's ended with that mantra: "Today is one day closer to being healed."

Fuck the Theory of Positivity.


Oh. And 'living proof' is totally the wrong expression, when the 'proof' is dying.

Is my truth too loud?


So what do you say when someone you love, but only know online, is dying? What's the Facebook etiquette for that, Zuckerberg?

One thing I do know is that I won't be saving up my kind words for the funeral. I hate that. If you've got something nice to say to someone, for god's sake say it to them while they're here; that's my view. Lyn, here's your eulogy from me.


I guess the one thing we all want before we die is to know we made a difference.

That might be as simple as knowing we brought up our child the best way we could, or we made our family's life easier and more joyful. It might be that we worked hard and did our duties well, or created some form of art that was meaningful or beautiful.

But some of us aspire to more than that. Some of us want to make a difference even to strangers, to make the world a better place by reaching out our hand.

Lyn, you made a difference to me-  a woman you've never met. You made my journey easier to bear every time you put your fingers on the keyboard.

I'm betting I wasn't the only one.

You were just far enough ahead of me on the road that I could keep you in sight. If she can do it and keep on laughing, so can I, I'd say to myself. You could make me smile even when I felt like warmed-over dogshit, when my bones ached so badly that I wanted to die now rather than later, when I thought the dark corridor of chemo would never end.

And now it's nearly over. That bitch of a Lucy is throwing one last party in your poor tired body, trashing every room with her gatecrashers.

It's ironic, isn't it? In the end, you'll beat her. She'll knock over a candle and burn the house down, and as you take your final breath she'll suddenly see that she's going down with you. There's no escape. Every window is barred. Lucy the Lump is a goner at last.

Damn you to hell, Lucy. Why couldn't you leave my friend behind?


I don't believe in Heaven- not in the way that Christians talk about it, anyway. I've had enough weird experiences to know that something remains, though, when people die. You can call it spirits or angels or ghosts, you can call it another dimension or the effect of quantum physics on time- whatever. I think some part of you will hang around for a while to keep an eye on the people you love, just like my long-dead mother seems to do for me.

Wherever you're going, know that I won't forget you once you're gone. I'll think of you every time I hold a hand out to some other woman who's just been diagnosed. I'll think of you every time some idiot tells me that cancer is caused by the wrong sort of thoughts, and I'll shout your name in their stupid ear till they go away and stop talking complete bullshit. I'll think of you every time I'm scared to death by another CAT scan, to see if my body's clear or if I've progressed to Stage 4, and I'll remember to stop taking myself so damn seriously- because all we have really is today, and bloody hell, what's the good of being a miserable sod? We may as well die laughing.

Wherever you're going, I guess I might see you there one day. I might not recognise your face, but I'll sure as hell recognise your sense of humour. You'll be the one leading the angels in a chorus of your latest hit, 'Fuck You, Cancer'.

Go in peace, my friend. And thank you.

Friday, May 24, 2013

On being brave

Courage, they say, isn't the absence of fear. It's being scared to death but doing it anyway.

Those of us engaged in a fight for our lives against that right bastard of a Freeloader, AKA carcinoma, are frequently praised for our bravery. I know that I greet such statements with a puzzled expression. I don't feel brave signing up for the amputation of a breast, or five months of poisoning, or five weeks of radioactive fallout.

I just feel that there isn't a choice.

No, wait. There's always a choice, as my therapist Rhonda used to say to me over and over when I was chickening out of ending yet another bad relationship.

The choice is to do it, or almost certainly die. And to choose the lesser evil, no matter how uncomfortable or hideously life-changing, isn't brave. It's just smart.

So let me rephrase that: I just feel that there isn't another rational choice.


It would be nice if there was another option. But you can't just stand on the sidelines and refuse to engage with cancer, as you might choose to do in situations where courage was required.

I'm thinking of my father, standing in a terribly vulnerable position giving covering fire to save the lives of his battalion in WWII.

I'm thinking of the firefighters climbing the stairs of the Twin Towers as they burned above them.

I'm thinking of that amazing Londoner, Ingrid Loyau-Kennett, who stood talking to a British soldier's armed murderers until the police turned up.

That's brave. That's genuine courage. It's highlighted by the contrast with less brave individuals' reactions, of course, as the photographic coverage of the London scene attests. Just look at the other people standing around, snapping the scene on their mobile phones but refusing to engage because it's dangerous.

That's cowardice, and that's a choice they made.

Cowardice is not part of an either/or choice when you have cancer. You either face the hideous treatment, or you face death.

Both are terrifying. Cancer makes cowards of us all.


Naturally, you can manufacture a third option- yep, you can delude yourself for quite some time if you want. You can believe there's some other way to beat cancer that won't be as unpleasant, but it doesn't make it true. Eventually, unless you have exceptional luck, option two stares you in the face and you fall into the pit of terror; you realise you chose death without knowing it.

I'm not into self-delusion. Please don't give me that 'miracle cure through natural remedies and positive thinking' crap. Some people- a very, very few- will spontaneously recover from cancer for no apparent reason, whether they've chosen course 1 or course 2. But until you have research-backed proof that something actually works as a cure and your 'miracle cure' isn't down to blind chance (or some avaricious charlatan's lies), you can stuff that one right up your jumper- and not down my throat.


So what do we do about the terror, if we can't delude ourselves? We can't just avoid it and cower in a corner till it goes away. It's not going away.

I think the answer to this has come clear to me as I consider what on earth is happening in my mind when I lie alone under the Kraken face of the x-ray machine at radiotherapy. There I am, paralysed into total stillness by an act of personal will and somehow achieving a meditative trance state- when any sane and rational person, knowing they were about to be shot full of potentially lethal radiation, would spring off the gurney and run screaming from the room.

(Don't think I haven't considered that option.)

What the hell is that about?

I've decided it comes down to making a choice again- not between courage and cowardice, but between fight and surrender. Those are our primary choices if we want to survive, and both require a high level of mind control. But it takes far more control to surrender, and it takes wisdom to know when to do so.

To choose a mastectomy was a choice to fight. The choice was easy. I chose to fight the Freeloader rather than to die.

To lie there in the theatre anteroom in my hospital gown, calmly accepting the anaesthetic whilst knowing that to do so meant I was committed to losing my breast and totally at the mercy of the surgeon's and anaesthetist's skills? That was a choice to surrender, and it was far more difficult. It required extreme mind control.

In the same way, choosing whether or not to have chemotherapy and which course to accept- four and a half months of extreme hell, or six months of slightly lesser hell- was easy. Fight, or die? Get it over with quickly and hit it hard, or draw it out and maybe let something nasty survive in me? No competition. That decision, like the decision to have the mastectomy, was made in a moment.

Turning up for each chemo session, though- and not dwelling on the thought of it and the pain and discomfort to come, until I sent myself mad- that required surrender.

I slipped sometimes on that one. Truly, chemo is horrible. They do kind of tell you that, but you don't really realise how horrible until you're stuck there for months. I had to talk myself into surrendering, often, instead of beating myself up about how rotten I felt.

Accept not being able to do anything at all. 

Try to rest.

Ask for help.

I failed, often. I wailed, often. But bailed? Never. That would be choosing death.

Brave didn't come into it.


And then there's the radiotherapy.

The Kraken is an image of terror from my childhood. I'd read John Wyndham's The Chrysalids, one of my all-time favourite books, and also of course The Day of the Triffids; both had scary moments aplenty, but nothing I couldn't handle at 8 years or so.

And then I picked up The Kraken Wakes, and lost my sleep for days. The concept of going so deep beneath the surface of the sea in a diving bell was bad enough (I'd nearly drowned when I was 6), but the cries of horror from the divers... the unseen monster only guessed at on the shore...the severed line... I was spooked for a lifetime, well before 3 in the morning when the Kraken emerged from the water to kill whole communities and I knew I couldn't put the book down till it was over.

The radiotherapy machine really does look like the front of a diving bell. There I am, staring into its blank face for half an hour, every day, for five eternal weeks.

I know that the Kraken can kill me. Sometimes, after all the talk about how hard it was to finalise The Plan, how tricky to get the angles right to avoid my heart, I get a shooting pain in my chest as I lie there. I know it's psychosomatic. At least, I think I know.

That's when I have to consciously engage my mind to surrender, and that's where I've discovered how powerful my mind can be. The only way for me to surrender, faced with that level of partly irrational fear, is to not be there at all. So off goes my mind into some other place, where absolutely none of this is happening.


Pretty amazing, isn't it?

But it's not brave. It's just that I have a very strong mind. If you were to praise me for my stubbornness, for my determination, for the power of my mind, I would accept the praise without question.

So let's not talk about courage- not while I'm fighting the Freeloader. Yes, I can be courageous- there's plenty of my father in me. I was brave to stand up to my boss one day many years ago, for example, when a corrupt act of hers to advance her own student threatened the career of another student. (Would you believe she'd reversed the two students' results on the official submission to the Board of Studies?)

I know what brave feels like. Brave is when you're absolutely wetting yourself with fear (in my case, of career-ending reprisals, not to mention the rabid expressions of fury I knew I would field from my ex-boss), but you choose to act anyway because it's the right thing to do.

Not the only rational thing to do. The right thing to do, when you have a choice to do nothing without harm to yourself.

So to be called brave for dealing with this cancer, in the only rational way I know, makes me feel like a fraud, because courage isn't what's required to deal with cancer. What's required is the ability to know when to fight, and when to surrender. What's required is the mental strength to surrender, when you really want to run away screaming.

Yes, I'm being strong-minded. But I'm not being brave.

Wednesday, May 22, 2013

A touch of the tar brush

Nobody ever talked about my black great-grandmother. In fact, if I hadn't been quite so good at eavesdropping I might never have known that I had a touch of the tar brush at all. But it's remarkable what a quiet child can find out by simply being quiet until people forget she's there.

(Yes, I am- and always have been- just dandy at being quiet as well as at being still, though many of my friends might roar laughing at the very thought.)

The being quiet came from my mother's side, the supposedly shameful blackfella from my father's. Being quiet has given me an enormous supply of material to write about, as well as some privileged information now and then; I've been sorely criticised for my silence many a time (particularly during my schooldays), but it's just one of the odd twists of my nature that makes me me. Now, as an adult, I see that my eighth-share of native Polynesian is probably responsible for many of my other quirks.

My passion for seafood. (I could live on it, easily; remember, even when we were in dire straights thanks to the chemotherapy, Ferdinand and I could still eat fish.)

My wavy-curly dark hair. (Yep, the hair that I miss so badly now, no matter how well the blonde Megwig flick-style suits me.)

My ever-so-unfashionable figure, which flatly refuses to resemble anything but a well-fed Polynesian earth mama. (And has done so all my life, regardless of diet or exercise; I've been such a star for the last two weeks, exercising every single day, and not a single ounce have I lost.)

My antipathy towards WASP formal ceremony, marriage included. (Walking out on my father's arm, I wondered what the hell I was doing there; it felt wrong in some way I couldn't identify for years. It had nothing to do with the choice of male. It was the whole ritualistic deal that didn't fit. God help you all if you ever dare give me a funeral in a church.)

But my native heritage is probably also responsible at some level for today's achievement award at radiotherapy, despite what the 'experts' tell me.


Segue to the nurses' rooms, post-treatment. I've just emerged from the change rooms, left arm aching, my chest slathered in cold aloe vera jelly which is sticking slightly to my hastily-donned clothes. The nurse who calls me in for my weekly check-up is a stranger; the staff down in radiotherapy continue my impression of public-hospital-as-manic-cuckoo-clock, with the faces changing daily. Continuity is at a premium.

I strip back down to bare-chestedness (why ever do they ask you to get dressed again between appointments, I wonder) and she inspects the condition of my skin.

It looks even paler some hours later...
"Well, that's excellent," she says. "There's some pinkness here, but the skin looks moist still and there's no sign of breakdown. What have you been using on it- just the sorbolene cream we gave you?"

"No, I bring fresh aloe vera leaves with me on an ice pack. I cut them and apply them as soon as my treatment finishes, then I use Moo Goo later on. And I use Vitamin E cream for massages on my underarm."

"That's great. You're doing absolutely everything right, and your skin looks fine. So, this is the end of your first week of radiotherapy?"

I look dumbfounded, I'm sure.

"No, actually. I'm two days into Week Three."

"You're kidding."

"I'm not."

The time has certainly flown. Tomorrow I'll be halfway through my radiotherapy.


The nurse picks her jaw up off the floor.

"That's amazing. All you've got to show for it is that little bit of pink. If your skin was going to break down, it'd have started to degrade by now. But it's not dry or flaking or blistering at all."

I just smile.

The nurse smiles, too. "I can see you're a fighter," she volunteers.

I resist the temptation to tell her the name of my blog.


It's a bit of a different story from the one I got from Dr Nobody yesterday. I'd thought the doctor's appointment set out on my schedule meant I'd be seeing Professor Power Ranger, but no; I got a bulk-bill style appointment with his registrar (think, what's the world record for strip, look, analyse, dress and push her out the door?).

And the aforementioned Dr Nobody was a true prophet of gloom, predicting that regardless of how great my skin looked now, it'd all fall apart by the time they were finished with me. Well, the 'Fighter' wasn't convinced by that- not at all. And when I tried to extract a rationale for his assessment of the situation, the waters became significantly muddy.

He tried to tell me it was cumulative, but that didn't seem to make sense given that my skin hasn't shown any reaction at all up till now.

So I asked him a few pertinent questions. No, the dose doesn't increase as time goes on- in fact, they take away the gel layers (a sort of cold-pack-like arrangement that goes on my chest during part of the treatment) and the dose gets administered deeper below the skin level. So the skin gets less wear and tear as time goes on, not more.

Go figure.

Somehow I think I prefer to believe the nurse on this occasion. Hey, the nurses are the ones who get to see the patients every single week and dress their burns. I reckon they might know a little bit more about likely progression of my skin's condition than Dr Who-the-Hell-are-You.


So the 'Fighter' is this week's star pupil, it seems. Or rather, my Polynesian skin is, in combination with the Bear's faith in cold, fresh aloe vera. Not that everyone will agree with me, of course. Some would say I'm just lucky.

I'd been told by the other nurses that cultural heritage had no bearing on how my skin would hold up- that skin reactions to rads are completely random and unpredictable. I've chosen not to believe that. Not in my case, anyway. I prefer to think of my heritage as an invisible shield between me and the Kraken; the touch of black in my skin refuses to be damaged and defeated by mere radiation.

Hell, my ancestors played in the New Caledonian sun for generations without sunscreen or sunburn. Why wouldn't I be protected too?

And so I thank the Fates for my touch of the tar brush. I'm doubly blessed, in that it's never been a problem for me. I don't look black, you know; you won't recognise it in me unless you're black yourself. The Aboriginal assistant at my work knew at once, without being told. None of the others did; they were 100% WASP. But she watched the way the black kids ran to me and trusted me at once. They knew, too.

So rather than being a burden, my black heritage is a gift. And it seems that some gifts are barely visible until you really need them.

Thanks, Great-Grandma. I'm not the least bit ashamed of you.

Thursday, May 16, 2013

What I can't do

So- Angelina Jolie has had her breasts replaced with fakes, before the originals had a chance to kill her. It's all over the papers and the talk shows. It's all over my Facebook feed. Anyone who hasn't heard about it in the last 36 hours or so must be in a coma, sitting alone on a mountaintop in Tibet or (and?) clinically dead.

It is, apparently, huge news. And it's causing a stir.

To some, Angelina's 'brave move' is welcome high-profile support for all women with that faulty and fiendishly homicidal gene. To others, it's a heart-wrenching affront, because they simply can't afford to make that sort of decision to save their own lives and she is in a privileged position.

And to a few cretins, it's an opportunity to grab onto a catchy celebrity tag (which will get them lots of lovely online 'hits') and spruik their own rabid philosophies of natural health care, to the point of blaming the victims for thinking themselves sick.


To me, it's simply all too much.


That's not like me, to say it's too much. I've often been accused- rightly- of having an unfair abundance of things I can do (and, indeed, doing them without it ever becoming 'too much').

I can write, in almost any form and style you want to nominate. I can sing and compose music and play piano and guitar. I can direct and rehearse whole musicals pretty much on my own, I can sew and knit and create all manner of artistic things, I can teach and advise and counsel... and so, ad infinitum.

Sickening, I've been told.

But now, thanks to the Freeloader, I'm finding a multitude of things I can't do.

Like, I can't do the Angelina Jolie debate. Normally I would wade in knee-deep and start shooting off pertinent comments left, right and centre. I'm a shit-hot arguer; you'll know that if you truly know me. I can gently (or not so gently) argue the birds out of the trees on my day, and possibly make them believe they should never have been there in the first place and that wings were made for clapping.

But right now, thanks to the Freeloader, I'm simply tired of politely explaining to people why their beliefs are batshit crazy, or why they have no right to pretend expertise when they haven't been there themselves. I'm weary of telling people, diplomatically, that they're welcome to their own beliefs but those beliefs are not necessarily true for anybody else- and that it's not okay to shout down and insult anyone who disagrees with them.

Nup, I can't do it. Changing the world is hard when you're a little bit busy being changed yourself, physically, in order to survive. Two-thirds of the way through my treatment regime of being chopped up, poisoned and burned alive, I've discovered that I'm running on empty. I've lost my mojo.

Maybe the chemotherapy has killed off more cells than just the cancerous ones. Maybe tolerance is a fast-multiplying cell. Maybe patience is, too, and diplomacy.

I'm too tired. I can't be bothered thinking for half of my own little corner of the internet, and then working out a way to write a polite comment whilst raging internally, in the hope that I'll stop some naiive reader from thinking that a shyster's 'natural' health remedies are anything more than crap on a brown rice cracker.

People- think for yourselves.

And Angelina, good luck to you, but honestly- I can't find it in myself to care much, one way or the other. You're just another person coping with the Freeloader. I know hundreds of them, and some of that anonymous throng are just as deserving of starring roles on the world stage.

Or more so.


Here's another thing I can't do: bring in the wood. Just as I recover from the chemo enough to even consider carrying a load of firewood from the woodshed to the house, I discover that the left side of my chest is becoming tender from the radiotherapy. Today I couldn't wear my prosthesis to town; instead I dragged out the soft, granny-style bra that Berlei donates to women having mastectomies, took the rock (ouch) out of my soft teddy-bear tit and wore that instead.

No, I didn't even care that I looked lopsided.

My skin is still perfection to look at- maybe a little red in the armpit, but to the naked eye it's mostly unscathed. It seems to be my fate to look just fine throughout my treatment. I never got the greenish skin tone and ghoulish dark eye sockets that many associate with chemo; people kept telling me how well I looked. The temptation to reply Well, I feel like shit was sometimes almost overwhelming. But hell, why be a miserable sod? I just kept smiling if I could.

No, for me the sickness remained internal, and so far it looks like that's going to continue. The left side of my chest looks fine (apart from the notable absence of a breast), but the stinging has started as the nerve ends start to object to being char-grilled; I'll still smile at you, but I'll wince if you touch me there.

So carrying a stack of firewood clutched against what used to be my well-padded left breast is out of the question. Even holding a bundle of kindling sticks there is uncomfortable. If it doesn't fit in my hands, it doesn't come inside with me.

It's incredibly frustrating. I'm used to being able to do all that stuff, and I'm telling you, carrying in the firewood one piece at a time is a royal pain in the perineum.

It's hard for me not to try to do it anyway- but pain is a really persuasive debater for the opposition.


I can still drive myself to town and back, if I have to. Yesterday work crises besieged Tamsin, my usual Wednesday lift-giver, and so I had pity and let her stay home to work her way out from under the pile of steaming excrement that threatened to suffocate her good spirits.

The Bear had work, for once, and there was no way I was going to stand in his way by asking him to be my chauffeur. Getting out in the paddocks on a tractor and getting a little money for his trouble would do him the world of good. I decided that I could drive myself once this week without undue danger to my health and wellbeing.

Surely I could. What could possibly go wrong?

(cue theme from 'Jaws')


It was good to be out by myself, I must say. I despise this dependence crap, I really do, even while I'm eternally grateful to all those who've given their time and energy to help me out. I'm used to going where I will, when I will. It's been a sore trial to my sense of self during the whole chemo shenanigan to be too weak to call the shots and go my own way.

And so I drove myself to my Wednesday appointment with the Kraken without incident, and lay staring into his black and bottomless face till I went into my usual trance of nothingness. There's the exception to prove the rule: one thing I've never been able to do is meditate, because I simply can't still my mind, let alone empty it. I swear I have ADHD of the brain.

And now, suddenly, I can do it. I can still my mind to nothingness when I lie under that terrifying machine. I can be somewhere else where absolutely nothing is happening. No sound, no feeling, no dreams, no thoughts. Nothing. Just emptiness.

I can meditate effortlessly whilst being nuked. Wow, there's an achievement, Freeloader! You taught me to meditate!

But only when I'm being being burned alive. I did try to tap into the emptiness the other night when I couldn't sleep, but my mind was still spinning and darting like a cockroach on crack two hours later.

Methinks my radiotherapy-induced meditation skills may prove somewhat useless in real life.


I left the Kraken building feeling somewhat blank still. Emptying the mind isn't just something I can snap out of. I decided I'd better go sit down for a while and get with the program before attempting the journey home.

Have some lunch, maybe.

Life has a way of waking one up, doesn't it? As I drove over a speed hump into the shopping centre to get some Zen Sushi (how appropriate), the entire back end of my exhaust system decided that it was the perfect moment to part company with the car and descend to the shopping centre driveway with a resounding clangclatterthunk. So out-of-it was I that despite the appalling noise, I never even noticed that it was my car making the hubbub, until three delighted schoolboys approached me as I parked and informed me with ill-disguised glee that I'd left half my car back at the entrance.

These things are sent to try us.

I thanked the cackling boys sincerely for letting me know, to their even greater amusement, and went back to retrieve my muffler and the business end of the exhaust pipe.

Fuck this, I thought, stashing the evidence in the back of the ute, and went and had my disappointing mass-produced sushi anyway. (When did the term 'sushi' cease to include an implication of raw fish? Tell me that. But I digress.) Somewhat refreshed, I sought out a reputable repairman and left the car behind, then set out on foot to do my usual cheerful rounds of the CBD when I have time to kill.

I quickly discovered that my op shopping mojo had exited stage left, pursued by a bear- possibly to attend a party somewhere in the Bahamas thrown by my tolerance, diplomacy and patience.

Thank heavens for my precious local contacts. I collapsed into one of the comfy hairdresser's chairs in Shartan, where Amanda provided a very welcome hug, plied me with drinks and biscuits and set me up on a delightful machine that provided a foot massage. (Much more fun than the Kraken. And I could turn it off myself when I'd had enough.)

Some hours later, I trudged back to collect my newly-muffled vehicle and staggered home. So much for my simple trip to town.


So I guess you can say I could do that; I did get home eventually, without going to sleep or running off the road. I may not be so capable in a few weeks, when the most mystifying and unexplained side effect of radiotherapy really chips in and I feel like I'm carrying a grand piano on my back everywhere I go.

There are lots of other things I can't do. I have trouble doing up buttons, because I still can't feel my fingertips properly. I can't do the jogging activity on the Wii Fit any more, because it hurts my tender chest when I hit the floor with any impact. And my memory is randomly stuffed. I can't remember a lot of minor things that used to be second nature, like the football results from two weeks ago, or the name of the neighbour who's standing right there talking to me.

(Um, maybe that's not so minor.)

But there's no point dwelling on what I can't do, is there? Deal with it, move on, count the blessings instead. I can still write, and play, and sing. I can still rely on my friends to help me out when things get tough and I find yet another thing I can't do. And I can still sit here in comfort in front of the fire on a cold autumn night writing this for you to read, because I have a partner who's ready and willing to cut the wood and help me carry it in.

And as I take my shirt off in the warmth to apply yet more moisturiser to my invisible burns, I can do it in complete privacy. There are no paparazzi waiting at my window to snap my scars.

I'm luckier than you, Angelina.

Tuesday, May 7, 2013

On being still

I am sitting on a wooden chair on the stage of the children's library. Around me sits a bevy of ladies, heads down except for the occasional glance in my direction. I hear the soft and constant movements of their pencils, the burr of an eraser now and then.

I am completely still.

I will not move a muscle for over half an hour. To do so would shame my mother, who has offered me as the life model despite the scoffing of the others. A four-year-old, they believe, will not be able to sit still.

I will prove them wrong.

My mother's sketch will be the best. The most like me. I know this.


I have waited so long for this date with the machine. Now that I'm here, lying immobile under its blank robot gaze, the request to be completely still will take me to another time and place. The girls call out numbers to each other, move the machine, move the table. Occasionally one adjusts my body slightly.

"Don't help me," she says, as I try to move in the right direction.

"I'm used to helping," I say.

But I stop. I shut down my body. I disappear into my mind.


There are books everywhere, beautiful hardcover books with glorious coloured dust jackets calling me. They stand upright on the shelves, alluringly part-open, or lean gently sideways in their rows below. 

I would like to turn my head to better read the titles. I am, already, an avid reader. But I must be still. I concentrate on the books above the shelves, straining my eyes to understand the distant text.

I see one large, thin volume standing open under the window, its comic book pictures so familiar. BarBar the Elephant. The running writing mystifies me. It is a puzzle I haven't solved, the only series in the whole room whose text I can't translate into moving images in my head. 

I bring those books home over and over, trying to decode the mystery.


A vivid green laser beams stripes the ceiling, so straight that my eye wants to follow it, to find the bend where it hits the wall. But I must be still.

A red beam is on my body. I see it out of the corner of my eye; I want to see what it marks. This treatment is a mystery too. I want to understand. I want to ask questions, but the girls are still exchanging numbers as they move around me in some strange methodical dance.

I must not interrupt their train of thought. If they get this wrong, the rays may hit my heart and damage it. I know this much.

I must be still.

I close my eyes.


Out of the corner of my eye I can see my feet in their black patent leather shoes. I realise that if I wiggle my toes, nobody will see that I moved.

I wiggle them. The freedom seems enormous.


I wriggle my toes, angle my feet from side to side. Nobody tells me to stop.

The freedom seems enormous.

The top half of my body remains motionless, freezing in the climate-controlled air. I have disengaged from it. I barely acknowledge the ache in my left arm, already so abused by surgery and the side effects of the chemotherapy. Wrenched high above my head, holding onto the white handle with numb fingers, it seems no longer part of me.


Time ticks away. I can read the clock on the wall, but I don't know how long I have to sit here. 

Until the women are done, says my brain. Always logical. 

How long will that be? 

There is no signpost to tell me this. I turn my eyes to the side, trying to catch a glimpse of the closest lady's drawing. Am I complete yet? Am I done?

I can't see it.

Another mystery.

I can't ask. That would seem impatient, as though I couldn't do this difficult thing. I will not shame my mother. She believes in me.

Except for my waving toes, except for my breath moving in and out, I don't move a muscle


Three warning beeps as the women leave the room. I am alone.

The blank face of the machine stares down at me, a glass-fronted ring like a diving helmet. Inside, the Kraken waits. I will not know when it seizes me.

The diver starts to make strange noises. A click like a camera shutter. I see movement in the depths of its dark face.


More sounds, brief and incomprehensible; a whine, a whirr.

Many long silences.

I feel nothing. Surely I should notice something as the dangerous rays travel into my body? There should be some sign. Some warning. Is it happening in the long silences, or in the brief bursts of sound?

I can't understand this story at all. I am guessing from the pictures.

There is nobody to ask.

I close my eyes again.


I have been on this stage before, singing. I can see the elderly librarian's sweet, gentle face. I strive to remember her name, but it is gone somewhere, hidden in the mists of childhood.

She gave me a doll, a doll in a plastic bag. A prize for being brave enough to sing. I felt like a fraud. It was easy to sing to people. I'd done it all my life.

I sang "My Bonnie Lies Over the Ocean." My father played the piano. It was a concert. I have a photo.


One of the girls comes back into the room, and I wake with a mental start. She pulls my table away from underneath the robot, attaches some odd extension. Pushes me back beneath it.

"Nearly done," she says. "You're doing so well. You're staying really still."

I smile tentatively. It's almost as though I've cheated. I've always known how to be still.

I mustn't shame my mother.

I am still somewhere between waking and sleeping.

I realise that my armpit feels warm. Something invisible has happened to it.


The machine whirrs and whines and clicks and rotates. It moves under me. Silence.

Am I done?

More sounds.

Not done yet.

How can it see me through the table?


"All done," says the girl cheerily as she returns to the room. "That went so well. I'm so glad we waited that bit longer and got the plan right. It went perfectly."

I know that she is pleased partly because I have stayed so still. Perhaps some people find this hard, staying perfectly still.

"You can get up any time you like, but take it gently," says the girl. "You've been still a long time. It'll be shorter next time, only about ten minutes- we're all set up now, so we can get right into it."

I can barely move my left arm. I rub the life back into it before I try to sit up. My armpit still feels warm.


In the changing room I trim the spiny edges from the aloe vera leaf my Bear has given me. I am using the little folding sailor's knife he gave me, too. Tuffluff, it says. He is here, though not here.

My fingers are unusually clumsy, numb and tingling all at once from the taxotere. It is still tripping my body up, that poison. I miss my stroke, take two slices off the leaf instead of halving it neatly through the soft centre with a clean stroke.

I rub the cool jelly over my chest, the base of my neck. Pay special attention to my armpit. That's the danger, that's where the radiation can scar the lymph channels and close them, leaving the fluid in my arm no place to go.

I reach over to rub more jelly on my back, reach as far around as I can. Exit burns. I've read about these. Soothe the back as well as the front. A sunburned back has no appeal.

Two weeks, the girl said. Two weeks of treatment, before burns become a problem.

I am determined to stave them off. I will be as proactive now as I was still before.


Tamsin is waiting for me in reception. We embrace and walk out into the moving darkness.

Wednesday, May 1, 2013

On having a heart

It seems that the squeaky wheel does, eventually, get the grease. Finally, I know why my radiotherapy has been delayed, but it took me a while to break through the wall of front-desk heartlessness and get to someone who cared enough to explain.

It only took four long and exasperated phone calls, most of which ended in me bursting into tears. I was reminded of what Simone said to me while I was in the Base Hospital; the quickest way to get to see a social worker is to cry. Five minutes after I hung up from the first call, I had Mel the radiotherapy social worker calling me, and she kept in touch over those next few days while I was in No Man's Land. I suspect it was she who knew which buttons to push to put the pressure on Professor Power Ranger for a response.

She's got a heart.


Yes, thanks mostly to Mel and the second, somewhat more decent-hearted receptionist I spoke to, I finally got a call from the man himself.

He also appears to have an adequate supply of compassion along with the knowledge. And after talking to him for fifteen minutes, I'm wondering why the hell he didn't do the calling in the first place- because now I get it, and now I don't feel anxious, and now I'm quite happy for the radiotherapy to happen whenever they're sure they've got the plan right.

Yes, yes, I know what you're going to say. But that's what receptionists are for, yadder yadder, and his time is better spent doing the expert medical stuff, not making phone calls, blah blah.

Is it really? That sounds like a paradigm designed by a time-and-motion expert, not by a human being. These people are dealing with patients who are desperately trying to keep their balance while standing on one foot on the fulcrum of the life-and-death see saw. If you're going to heal anxious, terrified people during the biggest crisis they've ever experienced, you need to have a big heart as well as a firm grasp of the relevant medical specialty.

Plain old efficiency won't do. People need reasons. People need compassion. People need reassurance.

What I needed to hear last Friday, when I got the first call, was why my treatment was delayed- because I was sending myself round the twist wondering if something was wrong, regardless of the reassurances of the second receptionist I'd spoken to. And once I got through the secretarial brick wall to Prof PR himself, I got exactly that- clearly, and with zero fuss.

This is what I heard.


I have a weird heart.

(That's not how he put it. But that's the essence of it.)

Because of my heart's particular shape and location, they can't just zap my left chest wall in the usual fashion. They have bring the beams in from a different direction, calculate the correct angles to miss my heart but still nuke the target areas, and check the overlaps of the beams so that the whole area gets the same dose of radiation. The aim (apart from not killing me by accidentally frying my heart) is to ensure that the area of my chest behind where my breast used to be doesn't get partly overcooked and partly underdone (which of course would allow any parboiled Freeloader fragments to regenerate).

On hearing this later, Mel had an explanation too.

"It's because you have a big heart," she suggested.


And she doesn't even know me, really. We've talked on the phone maybe three times, that's all. I guess she heard me loud and clear when I was telling her about the Bear and his history. That's the bit that cracks me up, every time. I can deal with my own stuff, but I can't deal with the look in his eyes when he talks about radiotherapy.


I got the chance to ask Prof PR a few questions, too. He didn't just garble an explanation and hang up.

(Good for him.)

First I asked him about zapping my neck.

"Will it get my thyroid, and what effect does that have if so?"

"Good question," he replied. "It'll hit about half of your thyroid. Mostly that doesn't cause a problem, but occasionally people report symptoms consistent with thyroid failure if the other side doesn't compensate. We'll keep an eye on that through your treatment. Make sure you report any excessive tiredness, for example."

Oh lovely; another thing to watch out for.

"So will kelp tablets help my thyroid?"

I almost heard him shrug.

"Well they certainly won't hurt."

Okay, tick off another of Jimmy's remedies; good.

Off on another tack now.

"Can you actually see the lymph nodes on the CT scan, so you know what you're aiming for?"

"We can't see the actual nodes, but we can identify the tissue that contains them and target that area."

Hmm. Okay, so we're aiming at an area there too, not at dots.

"What causes the tiredness during radiotherapy, apart from a failed thyroid? Everyone says it's the worst side effect."

I was starting to sound like I was reading from a list, but that's what happens when you obsess about something; you get questions going round and round in your head till you have someone to ask who might actually answer.

"That's a funny thing. Nobody knows. You get that same effect whether we radiate your thyroid or your foot, and nobody has ever been able to discover why."


And finally, the $64,000 question.

"So when do I start treatment?"

"Well, in my opinion the plan we've got now is good and we should stick with it, but it still has to be ticked off by a few more people. If all goes well I'd expect you to start on Tuesday or Wednesday next week, but you'll have to wait for a call to confirm that."

I'd run out of questions. I thanked him for his time, because I know he would have torn himself away from some other patient's crisis to speak to me. He sounded pleased by that. I wonder how many people remember to thank him for having a heart?


So cross your fingers, everyone. With luck I'll only be a week behind schedule.

And all the delay's been because of my big heart. No question that I've got one too, jokesters; they've seen it.

But I reckon they ought to scan that first receptionist ASAP.