Thursday, November 29, 2012

Roses and tribulations

Here is a rose for you.
Try to focus on the rose,
not on the rocks.
The rocks are much clearer.
But look at the rose.
Got it? That's where I am.
I think I'm running out of adrenaline.

I mean, I guess I had to crash some time. You were probably all waiting for it. You've probably been thinking, "Hang on a minute. The woman's been diagnosed with cancer, FFS, and she's carrying on like it's a career opportunity. She's writing, like, a friggin' book about it online. WTF? She's cruising for a bruising here."

Ouch. Don't mention the bruising. It probably is NOT helping my mood that the severed nerves in my left arm are still screaming blue murder, and according to Dr Goodguy will continue to do so for another couple of months. The feeling is exactly like having a huge bruise, one that extends from my underarm to the point of my elbow; every time that stretch of flesh touches anything, I wince.

Not the best spot for feeling mashed. When I try to go to sleep or just sit down to rest my arm, that's the part of my arm that contacts the supporting pillow or the arm of the chair. It's like having a tribe of fire ants bite me every time I try to give myself a break.

Or like resting my arm on hot rocks. Yep, that's it. (Look at the rose, Candy.)

Pain wears you down in the end. And the arm's not the only problem; my armpit's still swollen to hell, and it aches like crazy, all the time. Then every so often, out of the blue, I get an arrow of fire whooshing across the scar on my chest. I yelp like I've been shot, and the Bear has a fit because he thinks I've suddenly developed some fatal complication. He's not quite recovered from his last partner going into a diabetic coma without warning, thanks to the chemo; he keeps waiting for something diabolical to happen to me, too.

Our nerves are in shock, I guess- his figuratively, mine literally. The ends will take a while to heal over. While we wait for that to happen, I have to try to be patient. And he has to try not to jump to Worst Case at the drop of a hat.

Then there's what I call Phantom Tit Syndrome. I could swear sometimes that my left breast is still there, and that the nipple's jangling with cramp. It's quite mind-bending actually, to feel pain in something non-existent. It's like receiving messages from a dead person, posted long ago and delayed by an incompetent mail system.

Kind of creepy.

And what do you do with those messages? They're undeliverable. I could massage the pain away, or something, if the breast was still there- but there's nothing to touch, no pressure point to use to relieve the discomfort. My brain just hasn't worked out that it needs to send those impulses straight to the dead letter office.

Not known at this address. Return to sender. Left tit has left the building.


Meanwhile, here I am trying to wean myself off the painkillers before I get myself pumped full of poison for the first time on the 11th. There's only so much shit a body can stand- that's my view- and the less random chemical stuff I'm taking, the more chance my normal cells will have to survive the chemo.

So the easy option- take more mind-bending shit to control the pain- is not striking me as particularly wise. I want to give myself the best chance of standing up to the beating my body's about to take. I'm trying to eat sensible stuff, to keep reasonably active without overdoing it, to do my goddamned lymphoedema exercises faithfully every single morning, to rest when I'm tired, to keep cool despite the terrible heat here at present- you know the deal. And, of course, to limit the number of unnatural substances I ingest. Common sense things that we don't always pay attention to, until a diagnosis comes and taps us on the shoulder.

Hello, you have cancer. Pay attention to this shit or die.


Everybody's trying to help me have the best chance of living, too. People are falling over themselves to help me. It's a bit stunning, how many people are holding their hands up to do something for me.

Sometimes that presents as just being there for me when I need to whine (you know who you are, Gardeners and friends), or talking about my cancer openly when they pop round instead of shoving it in a closet because it's too confronting (hello Bob). Sometimes it presents as saying positive, accurate things; you've got the constitution of a fuckin' ox (thanks Vi for that reminder) is helpful, because it's true.

Some people are providing stuff they know will be useful (pre-cooked meals, front-opening shirts, vitamin E cream and Moo Goo, you name it- thanks everyone), or stuff that reminds me that they're thinking of me (I'm still wearing the bell, Christine). Some are sharing their professional knowledge (yes, Jools, I'm keeping up the paracetamol and ibuprofen during the day and I'm taking the night-time narcotic still- it's just not enough sometimes).

I have so much to be grateful for. But here I am in the pits of despond, regardless. All I can see right now is the wearying endlessness of it all- the trials and tribulations of a cancer diagnosis.

Oh come on, girl, be honest.

It's not just the pain. Some of the stuff I'm doing isn't helpful, and I've got to stop doing it.

Thinking too hard upon some of the side effects of chemo, for example, is not helping. The stuff I can't prepare for, or do anything about. Like, I don't look forward to wearing frozen mittens to help save my nail beds (my hands are a little arthritic already, and cold makes the pain much worse). I'll do my part by wearing black nail polish, but the rest- well, I'll just have to try to cope with that when it happens.

I've done everything I can to soften the loss of my hair, but staring at it in the mirror and noticing how good it's looking at the moment- nah. It's going to fall out. Dr Mumbles assured me it would. No getting round it, no hope. Try to forget it, for now.

People tell me that the nausea drugs are much better these days. And then Dr Mumbles tells me I almost certainly will feel nauseated, and I'll probably throw up. And I'll probably have constant diarrhoea.

Oh great. Eighteen weeks of that?

I've bought the Maxolon. I've bought the Immodium. The freezer's got lots of pre-made meals in it, thanks to cousin Nancy. Not a lot more left for me to do to displace the anxiety, so I just think about what's coming and feel like crap already.

I'm running out of try.

Most of all, I don't want to think about losing my mind to the syndrome known as 'chemo brain'; if that happens to me, especially if it happens permanently, you may well see me heading for the exit. I'm acknowledging that it's a possibility, but I have to try not to dwell on that stuff- even if I'm right out of try. Dwelling on what might happen isn't helping me to cope.

So I pick up The House at Pooh Corner. Winnie the Pooh has wise advice on worry, as Jools kindly reminded me some time ago as I waited for yet another terrifying round of results. Walking through the Hundred Acre Wood on a blusterous day, Piglet says:

"Supposing a tree fell down, Pooh, when we were underneath it?"

And Pooh replies, after careful thought:

"Supposing it didn't."

Supposing I got memory loss and confusion? Supposing I couldn't string my words together any more like pearls on a string, the way I can now? Supposing it turned out that my blogging, the best crutch I own to get me out the other side of this, disintegrated into a worthless mass of disorganised thought?

Supposing it didn't.


Even seemingly innocuous activities can rear up and bite me. Looking through all my old photos this morning, while I was trying to find the perfect shot of a red rose that I swore I had somewhere in the files, I got myself thoroughly depressed.

Here I am, a month before I was diagnosed. Two months before. A year before. So carefree. So full of plans.

What if I'd had that mammogram back then?

Here I am all dressed up to go out, showing the cleavage I don't have any more.

There I am doing some heavy work in the garden, or helping move the logs for our extension. I can't do that with a lymphoedema-prone arm. That part of my life is closed now.

And that reminds me that I don't like the restrictions. I hate them. I don't want to do a zillion massages and exercises and stretches every single morning for the rest of my life. I don't want to be careful of my arm. I never wearing gardening gloves. I've always been haphazard about wearing insect repellant and keeping out of the sun. That has never been who I am.

Stop dwelling on it, girl, I try to remind myself as I stretch my arm upwards yet again. Not too far. Just enough to keep it flexible, without making the armpit swell some more. Just do it, and get it over with. 

If I live through all the tomorrows before they get here, they'll get lived through more than once. And that's crazy.

Just do it.


As I lay in the dentist's chair yesterday- because as I told you before, cancer has no respect for what you had planned, and I was in the middle of a three-stage process to get a tooth crowned when I was diagnosed- while I lay there for two hours with my mouth open and my arm aching like hell, I was listening to some music on the iPod (thanks, Laura). I've always loved Benjamin Britten's choral works, and they figure heavily in my classical play list. He has an unerring instinct for picking amazing lyrics and making them jump off the page and fly into your mind, as if for the first time.

So it was with W. H. Auden's Hymn to St Cecilia yesterday. It's a difficult work to get to know, in musical terms, but once it gets to you it has you hypnotised for life. I've loved it a long time- it has a place on the play list for my funeral- and I've heard the last line of the text many, many times before. But yesterday Britten made Auden reach out of his grave, grab me by my self-pitying throat and speak directly to me anew as I lay in that chair feeling thoroughly miserable.

O wear your tribulation like a rose.

And so I will try. Today's post presents to you my tribulation, on a platter of harsh reality. I have no choice but to wear it, but I can choose how to wear it.

I choose to offer it to you, like a rose. You have been so kind. You deserve to know that not every day is an up day, and I can't always find the light.

This is a better picture than the one I couldn't find, anyway. You can see right into its heart.

Wednesday, November 28, 2012

Sex, lies and mastectomies

There's an elephant in the room.

When I talked about ugly, there was an elephant in the room that I failed to mention. When I took pictures of my scar and showed them to you, you might have thought that the elephant had been flushed out of hiding; you might have thought that there wasn't much left for me to talk about, in terms of the shock and difficulty of having a breast cut off.

Damn that elephant. It's still here.

Every woman who's lost a breast, or (god forbid) both breasts, knows about the elephant, but I haven't heard too many people mention it. It's maybe the next scariest thing to death, and eventually most people with breast cancer do talk about death. Maybe this elephant's scarier- or maybe it's just more personal, and that's why nobody dares to say anything.

The elephant's name is sex.

See, it doesn't matter how sure you are that your partner adores you. I know my partner adores me. I know he'd do anything to reduce my pain right now; he'd move a mountain if he could. He would, probably, even tell a few white lies to make me feel okay about having lost a breast.

But he can't help me with this one, because he's not in control of it.

Think about it. You absolutely are not in control of what turns you on. Some men love slim blondes, and an ounce of fat gives them the instant droops; some turn up their noses at blondes, but their eyes follow the buxom brunettes (and other parts rise to the occasion). Some women swoon over well-muscled forearms, or tight six-packs; some are dried up instantly by redheads, or hairy backs, or men who are shorter than them.

It's not something you can control. Hey, if we could control what triggers our sexual urges, there'd be a damn sight fewer paedophiles in this world. (Who wants to risk jail for sex? Nobody sane.) There'd probably be less gay people committing suicide, too. They'd just hit the switch that says 'prefer the opposite sex' instead.

And so for me, the elephant in the room is that my man is a boob man. He's always loved my breasts. And when it comes to getting down and dirty, I just don't know what's going to happen.

Will our lovemaking go merrily on along its old tracks? Will one boob be enough to keep the ol' feller cheerful? Or will his one eye, god forbid, be drawn to my scar- to the place where his beloved used to be- and will the train scream to a halt? Will the rush of blood end in a flaccid puddle of sweat and tears?

I don't know. Yet. I haven't been brave enough to find out.

Be careful about calling me 'brave'. 'Brave' means you did something you were scared to do. Most of what I'm doing with this blog doesn't scare me at all.


I can only imagine what the elephant does to women who aren't in the relationship of their life yet. I mean, how does this go down on the speed dating scene?

"Hello, my name's Monica. I like pina coladas and walks in the rain. Oh, and by the way, I only have one boob."

And across the table, Mr Hopeful suddenly won't meet your eye, and you're both desperate for the bell to ring.

The cyber-dating scene would be no better. I remember when one of my girlfriends, who is somewhat above her ideal weight and happy with that, tried the internet dating scene. She got inundated with crazies who wanted to feed her till she was helpless. It was creep city. So what happens if you declare openly that you have no breasts? Do you get flooded with weirdos who get turned on by amputees?

It doesn't bear thinking about. But some women have to think about it.

It takes a special type of woman to be able to overcome that, to be able to front up for a real-life date knowing that any hope of the zipless fuck is gone forever. There'll be a lot of explaining to do, before you even know each other. Sex on the first date? I don't think so. Sorry buddy, but please get your hand off my tit because there's something I have to tell you before you die of embarrassment. 

It takes a special type of man to deal with this stuff, too. I've got one of those, and I consider myself damn lucky. But being special doesn't mean he can control his penis.


When I was writing about ugly, I guess this was at the bottom of what was troubling me. I needed to build up the courage to get the truth out of my man, about what he thought of my scar.

And so I asked him, and I helped him to answer honestly. I took off the bandages and showed him the scar, and I asked him how he felt about it.

"It had to happen," he said. "You know I love your breasts, but there wasn't a choice."

I cut to the chase.

"You couldn't exactly call it sexy, though, could you?"

And he looked me in the eye, and said "No."

That was what I wanted to hear. He was, thank god, being truthful. Unless you are some sort of crazy fetishist, a mastectomy scar is not sexy. I needed to hear him say that. I was testing his honesty, and he passed with flying colours.

"But this is sexy," he said. "And this. And this."

I have no intention of giving you a colour-by-numbers of what he was doing just then.


Don't get me wrong. I do know that, overall, he still finds me sexy. He makes that clear every single day. And we have made love since the surgery, and it was great.

But I was wearing one of his old shirts that night, and when push came to shove, I only took the right side of it off. In the moment, that worked fine for both of us. That's as far as I'm ready to go just now.

So don't call me brave. Not yet. You can call me brave the day I take both arms out of that shirt.

Monday, November 26, 2012

Worrying about the wrong things

How hard can it be, I asked myself, to make a wig out of my own hair?

This is the ONLY one I could find
that looked ANYTHING like ANY
way my hair has EVER looked... and
that's on a bad hair day.
I just spent the last two hours looking at horrible wigs on the internet. And then, overwhelmed by the ghastliness of what I found, at horribly expensive wig-making equipment. I've hooked a rug before, so why the hell not my own hair onto a wig cap? It's only one extra dimension.

Common sense, of course, says that I'm an idiot. By the time I pay out for all the stuff needed to do it properly, I could have bought myself a wig that will do Just Fine for the few occasions when I need to venture out the door till my hair grows back. And I wouldn't have a pressurising sixty hours of work ahead of me to realise my investment.

Do you see what I'm doing here? I'm doing it again. I'm jumping ahead, way ahead, and worrying about the wrong thing. I'm worrying about my hair.

What I really should be worrying about is my trip to see the oncologist yesterday, if the spoken and unspoken messages of doom from Dr Mumbles are to be believed. Wasn't that just the joy ride.

I mean, hell, I tried to bring all my positivity into his office with me. I tried to show him that I was well-prepared for his endless list of grim side-effects, his miserable relaying of the same old information about my pathology reports. It's a nasty grade of tumour. It infected a lot of nodes. There may be more left up where the surgeon couldn't reach them.

(Yeah, yeah. I KNOW ALL THAT.)

I tried to get him to move right along to what we do next.

But no. Dr Mumbles went through the whole goddamn spiel, blow by blow, printed out the treatment programme and the list of side effects, got my autograph to say I knew what being systematically poisoned might do to me and I consented anyway, and repeatedly dodged my gaze as he signed me up for my trip to hell.

Look, I try to make excuses for everyone. Truly I do. Maybe, I thought, maybe he's just shy. That would explain why most of the information was delivered to his own kneecap.

(Hello, you're a professional. You work with people. Work with me, FFS.)

Or exhausted; it was the last appointment of the day, and maybe he was just ground down by eight hours of dealing with desperately ill and dying patients. It can't be easy to give more bad news to people who've already been shocked and mutilated; it can't be fun to tell them about their exciting future full of hair loss, nausea, diarrhoea, joint pain, anaemia, mouth ulcers and potential trips to Emergency if their temperature dares to rise over 38 degrees.

(That was the short list of common side effects. I won't scare you with the rest.)

Maybe he has battle fatigue. I could understand that.

But the Bear is less forgiving. I worried about even taking him along, after the misery our trip to the radiotherapist had caused him; but he'd looked me in the eye and told me he really had to get over that, he really couldn't let me do this stuff on my own, and I believed him. But as we sat there listening to the mutterings from the other side of the polished timber desk, it was clear that the Bear was drawing his own conclusions from the lack of eye contact, the Byron Bay screensaver, the gold Rolex.

Cancer, I could almost hear him think, cancer is big business up here, isn't it, mate? 

He needs someone to blame. He's been throwing haymakers at the Freeloader for two months now, and of course they've all been air swings. The last thing I need is for him to find a human target for his misery.

It's not Dr Mumbles' fault that my mother's side of the family has been the Freeloader's playground. It's not his fault that the tumour got  into my nodes before it was found. And most of all, it's not his fault that this is Round Three for the Bear.

But dammit, I wish Dr Mumbles wouldn't make himself such an easy mark.


The long and short of it is that Dr Goodguy wouldn't have sent me to him if he wasn't any good at his job. I listened to all the shite. I kept smiling when he didn't. I sought his eye like a cobra trying to hypnotise a mouse. I asked questions.

I didn't let him make me miserable.

Then I came home and tried to deal with the Bear's antagonism.


So I am a little exhausted with all this chemotherapy crap right now, and I will spit out the news fast and dirty and then go on to something more interesting, to make me feel better.

I signed up for four and a half months of deep shit, rather than six months of very slightly shallower shit. (Given that I've come through everything they've thrown at me so far without missing a beat, that was a no-brainer.) Yep, I got a choice of regimes; I guess that's meant to give me some sort of sense of control.

I chose the big guns. The Freeloader Must Die. Hit him hard, hit him quickly. Triple-barrelled shotgun- three poisons at a time.

First, they'll pump me full of Taxotere. Then I get Doxorubicin. Then I get Cyclophosphamide. That all takes three hours of sitting in a chair dying of boredom (someone please remind me to pay for some decent mobile internet access before this starts), with a drip of latent death stuck into my port-a-cath. (That's a neat little device that Dr Goodguy put into my chest during the last op. It stops the vampires turning me into a pincushion- it guarantees good, and relatively painless, access to my veins.)

Then I go home for three weeks, and feel progressively more shitty (see delightful list of side effects), then progressively a bit better. Then we do it all again- six times in all. I start on December 11th. The last treatment, if all goes to plan, is on March 28th.

Oh, and the important stuff- let's not forget the important stuff: it takes about two to three weeks to affect my tresses. I'll probably still have hair for Christmas. But probably not for New Year.

Hey, look on the bright side; if the Mayan calendar's got it right, I mightn't lose my hair at all.


And so, to other inappropriate worries. Like my mastectomy scar. When my son's friend Alex sent me this link to The Scar Project, it kind of helped me to get things back in proportion. Go have a look at the images, if you haven't already been there. These women are all under 40. Some of them are obviously a lot younger than that. One of them is pregnant, FFS. What the hell have I got to worry about?

And so I've come to terms with ugly. The photography on that site was so beautiful and arresting that I decided to do a bit of do-it-yourself, and see if I could reframe my scar as beautiful.

I've taken the bandages off. It's a naked scar. It's my-new-body-as-ancient-angophora-tree. I'll put the image after the next lot of asterisks, so you don't have to scroll down if you don't want to.

These photos are helping me to make friends with my body again. I think they turned out okay.


(Keep scrolling.)

(And a bit more.)

(Last one.)

Saturday, November 24, 2012

The problem with trying to be normal

The arm went all the way up- woohoo!
This morning, aware that my brother was coming for lunch, I decided I was over this whole being sick thing. My live-in carers had all gone home. I'd ditched the strongest of the painkillers last night, and the sky didn't fall. I did my physio exercises, and the left arm went almost all the way up above my head without me screaming or fainting.

So enough of this la dame aux camelias crap; it was time, I decided, to act normal.

And step one was trying to look normal. The first thing to deal with was my hair. After the fiasco at Turban Central and the meltdown at the hairdresser while looking for a wig, I thought I'd better make the most of what I've got while it's still here. What the heck, if I'm going to try to make my own wig out of my own hair (and that seems like a more attractive idea every time I remember the feel of that synthetic echidna-thing on my face and the Anne Geddes-style flower headband), I'd better make sure it's the right colour to start with.

So out came the dye, and I rejoiced in the extra movement in my arm as I applied it, washed it out and wielded the hair drier. (YOU try washing your hair after underarm surgery. Go on. The first day after surgery, I couldn't even pull down my own dacks to go to the loo.)

I am Woman, hear me roar.

Step Two in Reclaim Myself was dealing with that fake boob. It hasn't got as much airplay as the wig, but the problem of Wun Hung Lo has been something of a bugbear too over the last few days. When you have one F cup breast and one floating mound of teddy bear stuffing in your bra, Steps Must Be Taken to even things up before people start unconsciously cocking their head when they look at you and wondering if they had one too many tequilas last night.

Truly, it's offputting. It was bad enough when I used the special mastectomy bra that Berlei had kindly donated- a relentlessly practical garment, and somewhat reminiscent of the undergarments worn by 80-year-old grandmothers whose sole aim is to stop their tits from tripping them over. But when I tried venturing out in one of my own more attractive bras, with the teddy bear tit tucked into one side and secured with bobby pins, I found the whole left side riding up as I walked along and Tubby Teddy nudging me under the chin at awkward moments.

(When you're out in public trying to do the shopping, all moments are awkward. Down, Teddy! Sit! Stay!)

So I stood in the bathroom considering my options. I frigged around with that fake tit for about an hour, reshaping it with bobby pins (what did women do before bobby pins?) and pushing the synthetic fairy floss this way and that (fortunately I've had a lot of practice stuffing turkeys).

I put the bra on. I took the bra off. I poked and prodded. I still looked like the Titanic after the iceberg.

The problem was the weight. The more stuffing I put in the stretchy pocket of My First Prosthesis, the more I looked like a Frankensteinian blend of Dolly Parton and Whistler's Mother. One side of me came charging through the door full steam ahead and taking no prisoners, and the other was still rocking to and fro staring at the floorboards.

Gentle reader, there was only one option available to me. I put a rock in my prosthesis.

And do you know what? That side is still lighter than the real thing. But at least I can put a spirit level on the poop deck without it sliding off.


The Elmo look.
Flushed with that success, I made coffee, washed two days' worth of dishes, checked on the turkeys and watered the vegie garden. (I am Farmer, see me slave.) I made comic wigs out of fur fabric and took photos of myself being an idiot in them to entertain my Facebook friends. I cooked my brother a gourmet lunch- four types of pan-fried fish with home-made chips and broccoli- and it was delicious. (I am Elmo Durie. See me perform.) We broke out three varieties of chocolate for dessert. I felt like Queen of the Bungy again.

Till my arm started to scream, that is.

Dammit, I keep telling my body I'm all better, but it seems to have a short attention span.

So, belatedly realising I needed to rest, I sat down to find myself an attractive medical alert bracelet on the net (how's that for a convincing excuse for running up another $70 on the credit card?). I'd already had one moment of panic the night before, when a random mosquito bit me on the left arm after I forgot to apply my insect repellant; I found myself simultaneously applying ice to reduce the swelling, raising my arm to let gravity pull the lymph away from the bite and applying aloe vera to stop me breaking the skin by scratching it. (I am Octopus, see me break-dance.)

Such a pretty bracelet... especially with
dark red stones instead of pink...
Given that the Bungy mosquitoes are unlikely to scream to a halt, read my bracelet and say "hey folks, no injections in this arm- let's be kind and go for the other one!", you may be wondering about the sanity of my thought processes here, but I'll plead narcotic-induced haze. It seemed logical at the time. (And who knows, the chemo may disagree with me to the point that I faint in the street; better safe than sorry. It was such a pretty bracelet.)

The pain in my arm continued to increase. Chatting to Jools on the phone, I discovered that I'd forgotten most of what she'd told me about combining the different medications; chastened, I swallowed the appropriate drugs and stopped trying to be Action Woman.

The rest of the afternoon has been spent lying in bed trying not to moan. The doctor did warn me about letting the pain get on top of me, but of course I had to find out for myself, didn't I? With neither Vi nor Jools here to howl at me to take my medicine and quit overdoing it, I fell at the first hurdle. And dammit, it hurts. The narcotics have given me a false sense of security, and I am suitably chastened.

So I guess I'd better try again tomorrow. With chemo approaching like a runaway train, I desperately want to cram some normal life into the weeks I have left before I'm tied to the tracks. But for me, 'acting normal' tends to mean juggling half a dozen hats simultaneously whilst walking a tightrope.

That's all very well when I'm in my usual rude health (and no smart remarks from the peanut gallery about that adjective); seriously, I'm just not used to being without my safety net. This afternoon I crashed to the floor. Tomorrow I have to lower the wire and reduce the number of hats.


But somewhere at the back of my mind, the unpleasant thought niggles that even when I recover fully from this surgery, even when chemo and radio and hormone therapy are over, I might never get back to what I think of as my normal life. I'll be doing my lymphatic massage, applying my insect repellant, doing physio, wearing gloves, having check-ups and tests, taking pills and waiting for results for much of the rest of my life. My life has changed, whether I like it or not. Things will always be different.

My friend Lyn, alias Lucy the Lump, has all but come out the other end of this disease now, and for her it's been like walking off a cliff. The Bear warned me about this. When his last partner died, he was the one who walked off the edge into mid-air, as all the professional support disappeared and he was left to try to rediscover 'normal' in a vacuum. I know that, really, he's never found it, though he managed to stuff his cancer experiences in the back drawer for a few years. He slipped back into PTSD far too easily when I was diagnosed.

I've thought of Lyn a lot this afternoon, and all the others like her, stumbling back into 'normal' life after their endless rounds with the Freeloader, carrying their backpacks of bruises and scars and trying to fit into a world where the people are clean and unmarked. Fighting death puts us into Fight Club forever. It puts an extra dimension on every single thing that happens for the rest of our lives, and yet nobody will expect or want us to talk about cancer forever.

So I may never find my old groove again. It's always going to be some sort of a fight, even in six months or a year, or whenever the doctors ring the bell for the end of this bout. It's going to be confusing, and it's going to be challenging. My life's never, really, going to be 'normal' again.

Ah, what the hell. When was I ever happy with 'normal', anyway?

Thursday, November 22, 2012


Warning: this post contains an image of my mastectomy scar that some readers may find distressing. Or even, conceivably, ugly. However I promise that the ludicrous images of me in a turban and flowered kids' headband will make up for it.


Friends don't always agree on everything. Right now, my beloved Jools and I are not agreeing about something- the word ugly.

It's a word I feel the need to use. I look at the gash across my chest, at the pointless little flap of skin that used to be one side of my cleavage, at the randomly swollen and sunken landscape of my armpit, and the beauty-loving Libran inside me screams ugly.

Ugly is, to me, the right word- and I'm a wordsmith, and I damn well ought to know. Ugly is, by definition, something that is not pleasing to the eye; something that jars, something that inspires a desire to avert the eyes or turn away. Ugly is the stuff that rarely gets a place on a billboard, because it's too disturbing.

Ugly, to me, is factual- not perceptual.

Ugly is, to Jools, the wrong word- and amongst her many talents she's a process work counsellor, and she damn well ought to know. Ugly is completely pliable; it depends on where you're standing and what eyes you choose to look with.

Don't say it's factual, she says. There is no objective truth and no fact when using emotive adjectives- it's only a matter of how we are looking (and I use the word advisedly) at our experience.

Never the twain shall meet.

I know she speaks from a place of love, but right now I need the rawness and truth of my ugly to speak up for me. Because every time I look down, it doesn't matter how I look at my chest. It still looks ugly to me. I can't imagine anyone ever looking at it, now or in the future, and thinking it's sexy or attractive in any way.

I can see it with the eyes of Dr Goodguy, and know that everything is going to plan. I'm healing up beautifully. I will have a neat and tidy scar.

I can look at it with the eyes of a pragmatist, and know that it's a damn sight better than having a breast bulging with tumours and a very short future. The Freeloader has been evicted, and that can only be good.

But when I look with my own eyes, the eyes that love the swirls and curls and contours of nature, all I see is the aftermath of an open cut mine in my flesh. Rubens would never want to paint this nude.

Reframe it, I say to myself. Reframe it. That's what Aunt Annie says to people who are having trouble with their children, and using words like naughty and bad and disobedient about their own flesh and blood.

I try to reframe my own flesh and blood. I try to think of myself as an ancient angophora tree, once lusciously curved and fleshily beautiful- still standing in its old age, though ravaged and broken by storms.

It makes me feel a little better.


Vi is going home tomorrow. And so today, desperate to keep in front of the Freeloader and knowing that I'm buying tickets for the Chemo-nooga Choo Choo on Monday, I dragged her along to watch me try on some wigs and turbans at the specialist 'cancer-friendly' beauty shops in town.

It sounded like a bit of a laugh, until I actually did it. The weather gods didn't help (again). It was well over 30 degrees today, windless and humid, and I'd sweated my makeup off before we got anywhere near the shop. I sat gasping in the hairdresser's chair, my damp hair pinned back and flattened to accommodate the selection of wigs about to grace my brow. Looking at the pale, tired face in the mirror, I wondered how much worse I could look with green-tinged skin.

Not much.

And so to the wigs. And at first, gentle reader, it was funny. Let me say without hesitation that I have a big head. Make of that what you will. But the point is that the lovely and totally understanding hairdressers seemed to be trying to force a selection of small furry animals over a watermelon, and the watermelon was winning. 

Eventually we worked out that the only way those wigs were going on my head, over my thick and generous hair as well as the melon, was if I held on for grim death at the front while they wrestled the ferret (or whatever) into submission at the back. 

I tried not to let it bite me.

Job done, I looked in the mirror in pleasant anticipation- only to find Sally Field looking back at me. You know that bit in Steel Magnolias, after the funeral, where she confesses that she has finally realised that her dead daughter was right- her hairstyle looks exactly like a brown football helmet?

Touche. Or perhaps I should say, touchdown.


In the next chair, Vi was entertaining herself by also trying on a wig or two as she searched for inspiration for her next spectacular home haircut. (Her brother's a hairdresser to the stars, you see; he used to do Raquel Welch's hair. True story.) 

I took a snap of one of her less successful selections, which I will reproduce here despite the risk of precipitate decease at her hands. (So be it; you've got to die of something, and I intend to die laughing.)

Clearly her furry animal got caught under a lawnmower, though she couldn't see that from the front.

"I know exactly what Tony's going to say," I giggled, as she declared that this was what she wanted.

"What?" she asked.


Not quite Raquel's style. Or Tony's.


Several streaked and shaggy false starts later, I was persuaded that this wig was the one for me. Vi swore it made me look younger; the Lovelies assisting us agreed.

"So it should," I replied. "This is my natural colour, before I started to go grey."

I stared at myself for a while. Perhaps I should say, I stared at the mirror. Because it didn't look like me. Not at twenty five; not now.

"We can trim up the fringe," they offered, as I swept it impatiently out of my eyes. 

"Can I brush it?" I asked, and they provided an odd little metal brush. 

I brushed. I fiddled. I fluffed it with my fingers.

It still didn't look like me. It most certainly didn't feel like me.

"We can hold this one for you if you like, till you need it," said the Lovelies.

"Yeah, thanks," I said. Thinking, whatever, I hate them all. And took it off.

And burst into tears.

As you do.


The Lovelies were wonderful, particularly Keryn, who'd been through the Freeloader's mill herself and knew exactly where I was without me saying a thing. After a while (and many kind and understanding words), I put my face back together, confirmed that I'd like the wig put aside, thanked the Lovelies most sincerely and set off for Turban Central. 

I might be feeling thoroughly miserable, but I was on a fucking mission and the mission was going to be completed. Understand?

Stubborn is my middle name.

We were greeted at the doorway of Turban Central by a minor cyclone. The Sultana of Turbana, a complete stranger, swept me into her arms like a long-lost child. She swept Vi into her arms too, and I feared for her over-enthusiastic life; believe me, nobody gets in Vi's face without an invitation. 

I started to giggle again. Vi restrained herself from attacking the invader with any of the sharp implements readily available on the chemist's shelves, and we were propelled to the rear of the store for Showtime.

"Now, what you have to do when you wake up in the morning and you look at yourself in the mirror and feel like you look horrible is to go and wash your face, put on your moisturiser, pop on one of our lovely turbans and do your makeup," she enthused as we quickstepped down the aisle. "Then you'll look lovely again, and you'll cheer up and feel soooo much better."

I had no time to protest the accuracy of any of this before she sat me in front of yet another unkind mirror, tucked up my hair and placed a red tea cosy on my head. 

"And you can add one of these lovely children's headbands with the flower, to dress it up," she gushed.

Pardon? My head looked like a hurriedly-wrapped Christmas present. (Ooh look, I got a watermelon.) And I felt ridiculous.

Not a promising start.

"Now, this is one of my faaaaaaavourites!" she continued, spiriting the Christmas cheer away and adorning me instead with a sailor's beret. I promptly got the giggles. Again.

"Time for a bit of a hornpipe?" suggested Vi, who'd sunk to the ground and was holding her own ankles to prevent herself from lunging for the Sultana's throat.

(No kidding.)

Sit. Stay.

"What about that one?" I asked the Sultana, pointing to a rather more free-form and colourful model.

"Oooooooh, the Byron! Oh, that's one of my faaaaavourites too. Now, I'm just going to choke you for a moment."

(I didn't make that up.)

The 'Byron' turned out to be a large circle of stretchy fabric which was looped around my neck, twisted, grabbed, forcibly dragged back UUUUP over my head, twisted again, dragged OOOOVER the top again and then fiddled with... till it looked like this.

(If that's how they do it in Byron, I think I'll stick with the Karma Sutra, thanks.)

"How on earth is she supposed to do that when she's just had a mastectomy?" asked the red cattle dog on the floor, stooping to logic yet again. (Indeed, my arm is recovering remarkably quickly and well, but perhaps the choreography of the Byron was still somewhat beyond my present capacity.)

And so it went on, at various levels of ludicrous, until I was barely concealing my hilarity and Vi had to leave the shop lest she embarrass me by savaging a passing ankle. 

I went from washerwoman to gypsy, from Joan Crawford to Jason recliner. I kid you not. And it seemed that every one was a faaaaavourite (and most seemed hideously expensive, though I haven't been watching turban share prices on the stock market). 

There was one doozy of a number that I was laughing far too hard to photograph- a swathe of red velvety fabric, pleated fan-like into a buttony thing at the front. Perhaps, I mused, my upholsterer neighbour had come in while I was giggling helplessly and mistaken me for an armchair. (Hey, it was a perfect match with the curtains Jarvis had made me.) 

I decided not to purchase that model, in case my dog absent-mindedly fell asleep on my scalp.

Eventually I wiped away the tears of laughter, dodged a parting embrace from the Sultana and purchased a few relatively cheap 'looks' that didn't make me look completely loopy. 

(I will confess to adding the Joan Crawford out of sheer mischief.)

I made my escape, put Vi back on the leash and dripped my way back to the car. I drove home. Enough of this dependence crap, already.


I was sporting one of these ensembles, but with my fringe released from custody, when the Bear came in the drive. I could see it unsettled him, even without the I'm-having-chemo naked forehead. 

Everything unsettles him these days.

And as I told him about my day, and as I saw in his face the same misery I'd seen in my own eyes in the wig shop, my cheery facade crumbled once more.

"I don't want people to be sorry for me," I sobbed. "They don't even know me. I'm not a cot case. And I hate it when people to talk down to me, like I'm over there with the victims. And I hate not looking like myself. When I feel bad it's not something I can fix with a layer of makeup and a silly hat. Why do they think that fixes it? I don't look like me any more."

"It's so brutal," he said, as he held me close.

I showed him the pictures of the wig I'd chosen, too. 

"That looks good," he said. "It suits you."

"I hate it," I said. "I want my own hair. That wig doesn't even feel like hair. It feels like the fur on a cheap stuffed toy."

"It's synthetic," he said. Stooping to logic too. "Nothing feels like hair except real hair."

I knew I was being unreasonable. I didn't care. I had a jolly good wail then, a completely first-world-problem self-pitying wail, because I'm used to being pretty. I've always been pretty. I was a child model, FFS. My face was my fortune. Even at 56, I've still got a pretty face- or I have when it's the right colour, and surrounded by real hair.

I can see that there's no way I can fake it through this- not really. I might fool some people, if I tart myself up enough, but I can't fool myself

Okay, my dearest Jools, point taken on this at least; I won't say I'm going to look ugly. But I'm going to look wrong


So, job done. It was a tough day. Some part of me knew it would be, or I would have spent today chilling out with Vi and saved the fashion parade for next week, when I'm on my own. But at least I recognised that confronting the truth of what chemo would do to my ego was something I had to do while I was still feeling well, and while I still had support.

It's knocked my vanity for six- that's for sure. Another body blow, so soon after the first.

But damn it, I've had my cry about that now, Freeloader. Bring it on; do your worst. I've seen angophoras with speckles and scars and bare branches, and I've still thought they were beautiful. So I'm ready for you, you total bastard.

Tuesday, November 20, 2012

Death, dogs and decisions

When we woke up yesterday morning the Bear's little dog had crossed the finish line. At 14, she was blind, nearly deaf and starting to lose interest in her food- well down the slippery slope to the moment when the Bear would have to bite the bullet and take her to the vet for the last time.

She spared us all that by slipping quietly away from us in her sleep. It was a merciful outcome for her, but a moment that I'd been dreading. We'd been struggling with her decline from well before I was diagnosed, and it was always going to be a hard moment for a man whose dogs have been his only children. She was the last of her tribe, the sole survivor of his little 'family' of four. And her manner of passing echoed that of his previous partner, taking her leave quite alone in her bed in the early hours of the morning.

So I watched last night as an angular figure struggled away in the twilight, digging a resting place for her amongst the tall trees near our lagoon, sweat and tears dripping from his face as he broke through the tough soil laced with massive roots from the flooded gums.

"Is there anything I can do?" I asked softly, feeling so helpless standing there with my useless arm and my wounded chest.

He looked up, silent for a moment. Then,

"It's enough that you're here."

And went on digging.

This morning he was up before I woke to bury her, choosing to say his last goodbyes in private. And that was okay with me. I came late into the Bear's relationship with his dogs, always aware of the meaning they held for him beyond any normal human-animal relationship. They were his saviours at a time when he'd been abandoned by the blackbirds in his life, left to hold his grief as best he could all alone.

It was his dogs who got him through that terrible time, his dogs who ensured he got up in the morning and who lay by his side at night. He had no-one else. When I met him, he wanted no-one else.

We were friends long, long before we were lovers, and our friendship was grounded not only on our knowledge of pain and suffering, the knowledge of how cancer could turn your world inside out and shake every last breath of joy from your body, but on our knowledge of the redeeming power of the love of our animals.


My own dog, Jack, is sitting at the bottom of the bed as I write. He knows that something is amiss here; he's known it all along. He's what you might call a Velcro dog, sticking to me obsessively from the moment I rescued him from a concrete cage at the RSPCA six years ago.

He isn't my dog; he's My Dog. Ask him. And I am His Person.

Since my diagnosis, he's been by my side every moment he can. If I'm on the bed, he's on the bed; if I'm at the table, he's at my feet; if I'm taking a walk in the garden- you get the idea.

But he's not the only hound on the block, and he has to take turns with our working dog for his freedom. Left off together, pack mentality takes over and they decide to go down the back to chase wallabies, which we can't abide. So on the chain he goes, for half the day.

If he's on the chain over at the shed and I'm inside the house, he'll start out with a soft whimper.



Then he'll start to sing quietly, reasoning with us as best he can; if only, I often think, if only I could understand Dog as well as he understands English.


"Mmmahhhhhh? Aaaaaah!"

It's such a persuasive language.

If ignored, he resorts to the small bark first.



"I'm being so reasonable," he seems to say. "Surely you know what I want?"

But once the bark appears, his patience fades quickly.

"Let me OFF!" he shouts. (But in Dog, that's just one syllable. OFF.)


He repeats this mantra at regular intervals, about ten seconds apart and loud enough to be intrusive, until we cave in. (We always cave in.)

And then he's by my side again, on the bed with me while I write or read, in the kitchen if I'm cooking, running rings around me and leaping up at my arms in excitement if I'm going for a walk. He will love me best till the day he dies- or till I do.

There is nothing so comforting as a good dog when you're sad, sick or sulking. Nothing.


The community nurse came around yesterday and, with a little persuasion from Vi and me, removed the drains. They put these long tubes with bags on the end into me after the operation to stop me swelling up like a blimp, as my body rushed all its liquid defences to the area attacked by the scalpel. Totally necessary- and I was totally over it.

I can't begin to explain how much better I feel without them. It's not just the constant dragging, the pain when you move suddenly (and the bags don't), the itching of the dressings (to which I seem to be universally allergic)- it's the constant reminder that you're sick.

I don't feel sick. My entire being is rebelling against being categorised as somehow impaired by this disease. Yes, I had cancer. (Look, it's past tense. Yeah, yeah, radiation, chemo, blah blah, I'm doing it. Now shoosh.)

Yes, I had an amputation as a result.


(And get those bloody tubes out of my side.)

With perfect timing, shortly afterwards a large squishy parcel arrived in the day's post. It turned out to be a bag of boobs, a joke I've been dining out on ever since. Vi and I spent some amusing moments with My First Prosthesis (surely there's a children's toy idea in there somewhere) as I ventured into a bra for the first time since the mastectomy and discovered the ups and downs (literally) of trying to match a real boob to a bit of stretchy fabric filled with teddy bear stuffing.

Just call me Wun Hung Lo.

Armed with this face-saving device, I dressed myself up to the nines this morning for My First Trip to Town with one boob MIA. I had a date with The Lone Power Ranger and his offsider Tonto at the local nuclear plant.

Oh o-KAY. I went to see the radiotherapist.

Thank heavens for the homework I've done, or the list of possible side effects of radiotherapy may have had me heading for the hills. (Home, Bear, and don't spare the horses.) When solicitors force them to list 'sudden death' as a side effect for legal reasons, do they understand the effect that has on already-terrified patients? FFS, guys. Enough. I actually need this therapy, so please don't make me wear the corduroy trousers as well as the fluffy floating boob.

On a more serious note (if sudden death isn't serious enough), I do have to make a decision about my armpit. I'm resigned to them nuking my chest, where the whole thing started, and the nodes in my neck, which can't be removed during breast surgery; to me it seems obvious that those two things have to happen.

But wait- there's more. (God, how I hate decisions.) Because so many of the axillary nodes were cancer-positive, indications are that I should have my armpit irradiated to within an inch of its life in case of outlying Freeloader deposits there, which could cause a recurrence.

OH and by the way, that carries a 30% chance of lymphodoema.

Great. So I have a 3 in 10 chance that my left arm will swell up like a buck's night condom, permanently, and I'll have to wear an elastic sleeve, permanently, and I'll be somewhat incapacitated, permanently.

I play the piano.

I pick up children at work.

I work on a farm at home.

I don't want to stop doing those things.

And as I explained to him, "An elastic sleeve, in summer, where live? I live in a wetland. It's like living in a sauna for part of the year. It's hard work wearing any clothes at all in February, let alone a full-length elastic sleeve."

Which made them both laugh, of course, but they got the message.

"Look at it like this," said the Lone Power Ranger. (That's Professor Power Ranger to you.) "There's a 30% chance you'll get some level of lymphoedema. But there's only a 10% chance that it'll be severe. So you have a 90% chance of not being incapacitated."

When he put it that way, I decided to sign the form, on the understanding that I could tear it up at any time. (Did you know that you own your own paperwork? I didn't know that. Thanks, Prof PR.) He's going to get a second and third opinion from some colleagues, because he could see that I was less than enthusiastic about having a Michelin arm for the rest of my life.

We talked about the dosage, too. Sadly, there's no such thing as a lesser dose of nuclear fallout. You have to get the nuking to a certain critical level before anything much happens, or you really needn't bother doing it at all.

"I can give you the lower end of the successful level, rather than the upper end," he offered.

That sounded appealing.

See, it's not really the being burned alive that bothers me now. It's the thought of maybe not being fit to work with little kids any more, not being able to play the piano any more.

And, maybe, constantly having to protect my arm from my dog's loving advances. He's a boisterous fellow, is my Jack. All of that is part of my healing too. I have to balance the medical therapies with the things that I know will keep my spirit afloat.

I know I'll have to watch the Bear's spirit even more closely, too, since little Daisy moved on. But I have help. I watched this morning as our working dog Fletcher, well aware of our departed friend in the garden, crept onto the bed and put his paw gently on the Bear's arm.

"Will I do?", he seemed to say.

Saturday, November 17, 2012

Anger management

Over the years I've had occasion to seek counselling more than once. Mostly it's been because a key relationship has been in the throes of a life-threatening illness. I've been charmed in my choice of therapists- Brian Cade, Rhonda Dilger and Susan Hatch, take a bow, for all of you are truly brilliant at your calling.

From each of these gifted professionals, I've learned precious information about myself in the process of escaping negative people and destructive dynamics. See, we don't have a hope of dealing successfully with other people until we sincerely seek to understand ourselves. When we ignore our own role in forging our future and simply blame others for all our woes, we miss so many chances. We hide behind a comfortable wall of anger when we could- and should- be staring kindly at our own culpable behaviour until it notices us and scuttles away to take a wash, leaving us a better person with a cleaner chance of happiness.

This time round, when the betrayer is my own body, there is no-one else to blame. How precious my learning is now. Because I remember sitting in Rhonda's office years ago, after she'd finally got through to me about the pointlessness of my combative stance, sobbing "But what do I do with the anger? I've got nowhere to put the anger."

There is, of course, no real answer to that question. Anger needs to be sanded gently back to the feelings hiding behind it, before it can be treated and put away. To be rid of my rage at what's happening to me now, I know from my work with Brian and Rhonda and Susan that I need to take a good, long, kindly look at it, and keep looking until I can strip it of its disguise. Only then do I have a hope in Hades of making it go away.


There is much to be angry about. How dost thou anger me? Let me count the ways. (To misquote a perfectly good poem.)

1. I'm angry with myself, for noticing a gut feeling of urgency  months ago but ignoring it. The old mammogram referral in my handbag got tossed out instead of followed up, and now I have one breast when I could still have had two.

How long will it take me to respect my own instincts? Do I have to come close to death before I listen to myself? I feel stupid about that, and I hate feeling stupid. I'm disappointed with myself for being a coward. I'm devastated that my reluctance to open a can of worms has made this journey longer and tougher than it needed to be, for my Bear as well as for me.

It's too late to regret that bad decision, but it's not too late to learn from it. Perhaps that's why I'm so determined to stare everything in the eye now.

No more cowardice. I kick the anger out the door; I try to replace regret with courage.

2. I'm angry that the Bear is going through this all over again. That's just not fair. How could I not be furious about that? Am I not entitled to be furious? What do I do with that feeling?

Short of throwing rocks through stained glass windows, I mean.

The fury is a curious disguise for empathy. I love this man. I hate it that he's hurting so badly because of me. I feel responsible for his pain, too.

See point 1.

I do my penance; I try to see my anger as protective love, and offer it rather than throwing it.

I give him plenty of rope. I forgive him for his moments of not coping. I try to be there for him.

3. I'm angry that my body looks so wrong now. I'm angry that despite that forest of information I was sent at the start, despite all those pink pamphlets, nobody was brave enough to communicate that a mastectomy is an amputation- and an ugly one at that.

A woman's body with one breast missing isn't something that can be fixed by pretty bras with pockets in them and a lump of silicone. Amputating a breast distorts everything we've been brought up to think of as normal and beautiful about our bodies. Where is the truth written about this? I'm angry that nobody wrote the truth. They dressed it up in pink ribbons and hope, and pretended it was as 'doable' as a CT scan or a blood test.

Maybe they do that so you'll actually submit to the operation. Maybe they're trying to reduce your sheer terror.

It didn't work for me. Terror might have prepared me better for horror.

I'll call that particular anger the first stage of grief, I think. There's no denial or bargaining when your breast has gone AWOL. Eventually, I guess, it'll moderate itself into sadness, and one day descend into acceptance.

I am so not there yet.

4. I'm angry that nobody talked about severed nerves.

You know that sore left arm I had? It took three days for the pain to wear me down to the point where my cheery face fell off, and someone finally noticed, and the nurses stopped talking about the position of my arm during surgery and started mentioning that some people do have this bad reaction after the nerves of the upper arm are severed during node clearance.

I find that I'm one of those people, and I wish to god someone had given me a chance to prepare for that possibility. It's a bit like the whole amputation thing, really. Forewarning has a purpose, guys. I spent three nights not sleeping properly because the pain meds weren't touching the jangling agony of exposed nerve ends, a pain which stretched from my shoulder to my elbow and had me sitting there groping for pressure points in the middle of the night. I'm angry that it took three days for anyone to put two and two together and think to mention a side effect that isn't much talked about in the books.

Getting past the anger on that one is a bit harder. Words like 'incompetent' and 'thoughtless' flood my brain with useless blame; pain does that to you. But if I'm honest, I know that the medical staff were run off their feet, they were doing their best, and I wasn't exactly being a squeaky wheel.

Be fair, Candy.

I felt overlooked. I felt unimportant. But really, I was too good an actress. I was 'coping' a bit too heartily for my own welfare.

Lesson learnt. Squeak louder.


So that's the anger, in a big fat nutshell. Some of it I can toss. Some of it will be round a while longer yet. I'll keep staring at it. I'll try not to throw it.

And I do know the ingredients to make it go away, now that I've had a good look- even if I haven't quite got them in the mixing bowl yet.

Courage. Love. Acceptance. And a little less coping.

Coming home

I live in what one might call a 'challenging' climate. Having cancer over the Bungy summer was always going to be difficult- I knew that. I just didn't expect to hit the wall the instant I came home from hospital.

But yesterday we got an early preview of February. Much as I love my home for the rest of the year, late summer is a great time to be somewhere else. Take our next-door neighbour; every summer without fail, he heads south to Melbourne, where temperatures in the high thirties will at least not be accompanied by humidity requiring a snorkel and flippers, a constant smothering doona of cloud cover and squadrons of mutant March flies lining you up for annihilation if you make a break for the dam.

Well hello, world- last time I looked it was only November, but the weather gods seem to have had a collective brain snap while I was tucked away in my air-conditioned cocoon at the hospital. Because that is a perfect description of the day Nature served up to us yesterday.

There I was, wincing as I struggled out of my narcotic coma at 5am, reaching (ouch) for an anti-emetic to combat the nauseous hangover from last night's pills, juggling my shoulder bag of drains across my lacerated body as I staggered painfully to the loo... only to discover, as my foot hit the unnaturally warm floor (yes, already), that my longed-for refuge had turned into hell to welcome me home.

Things only got better when Vi tried to get me some breakfast and discovered that the fridge had broken down. What perfect timing. I've never been a fan of luke-warm milk, particularly when accompanied by the delectably rancid scent of other perishables that didn't make it through the stinking hot night.

We couldn't even send the Bear off to get ice; he'd shot off to the cattle farm at some ridiculously early hour, anticipating a trying day of attempting to persuade reluctant cows that it was a good idea to walk for miles through the treacly air just for the awesome fun of being yarded, medicated and stabbed in the ear.

Good luck, Bear.

It would have been awfully easy at that moment to decide that the universe hates me. It's all very well to be unrelentingly positive while you're being waited on hand and foot in climate-controlled comfort, whispered a passing devil, but how are you going to go when real life takes the wheel back? 

How indeed? For a while there, it really did feel as though some malicious force was testing the power of my will to keep despair at bay. The universe at large has absolutely no respect for the fact that I Have Cancer. My Bear might call me princess and tell me I'm still, and eternally, beautiful to him, despite the chain-wired demolition site on my breast bone; my friends and relations might tie countless helium balloons to my extremities, buoying me through the many moments of desperation and heart-lurching terror with practical and verbal gestures of support.

But they can't control the weather, the failure of vital equipment  or the desperate need of my Bear to maintain some semblance of normal life, and neither can I. Cancer or no cancer, life goes unrelentingly on, with all its glitches and frustrations. All I can control is my ability to suck it up. 



Faced with too many obstacles and too few resources, I swallowed more pills to kick the pain away, ran the bath half-full of cold water to chill at least my nether regions back to a bearable temperature and hid inside a book to keep me away from the mirror.

I considered how I'd go enduring chemo when the weather was like this, and the thought wasn't pretty.

I wondered how the hell I was going to solve the fridge problem when I wasn't even up to plumping my own pillows.

That sort of thought pattern wasn't doing me any good at all, so I gave up and slept. Sometimes giving up is the best I can do; when you live in a climate like this, in a place as remote as this, you learn very quickly not to fight against Nature. Nature will always win. There will be days, and many of them, when I have to take exactly this approach to my illness- just stop kicking and screaming, and save my strength for another day.

It doesn't come naturally to me. I feel like I have to be at every gate first, waiting for the Freeloader with a bit of 4 x 2. Even then, he can shock me, as he did when I saw my remodelled chest for the first time after the surgery. How could this happen to me? How could he get this far under my defences without me knowing a thing? My instinct is always to get ahead of him, wait around every corner and beat him to death with a shovel as he sneaks by.

But some days, I know I won't be able to lift a finger- let alone a spade.


By the time I'd had yet another nanny nap, I had the sense to remember: ask for help. A single random sentence on Facebook was enough to bring my neighbour Tamsin to my door, bearing eskies full of ice for the fridge and words full of balm for my soul.

Somehow she managed to find my inner Amazon. That's what real friends do when you're sinking; they rescue you not with their own strength, but with yours. By the time she left, I'd affirmed that the Freeloader still hadn't got my spirit. I might have suffered some collateral damage to my body, I might be miserably uncomfortable, but that was all superficial; my gut was still sure that I was nowhere near hitting the canvas any time soon.

And yesterday did end, eventually; bad days always do. The Bear may have had to forget he's nearly 60 as he rode the farm bike round like a superannuated Crusty Demon, running a stray bull out from the herd as though he'd been mustering cattle all his life; but at the end he could drop his exhausted body into bed beside me and fall straight to sleep. I managed to find someone on Facebook who wanted to sell a perfect replacement fridge to me for practically nothing, and that someone was not too far away from home. I turned the fan on full bore and went to sleep too.

Bad days always end.


After the ordeal by fire yesterday, I handled today's heat better, but the challenges continued. By this evening, the hideous weather had resolved itself with a massive storm which blew down a huge gum tree by our shed. The insanely heavy rain somehow managed to find new places to get through the roof, leaving us without any lights as dusk fell and turning Vi's bedroom into a lake.

I'd have been far more upset about all that if the Bear hadn't come inside shaken to the core, telling me how he'd walked the path where the tree fell literally seconds before it came down, and then turned and watched horrified as it came towards him.

"A tree could fall on me tomorrow," he'd said. It damn nearly did.

I might have cancer, but I'm lucky, really. And so is he.

Not all of my power to hold my own as I walk through the Valley of the Shadow is blind luck, though. Some of it, I realise, is good management. Jools, the Bear, Vi, Tamsin, all the other friends and relations who know how to remind me of my own strength- they're not here by accident. They are the people I've chosen to surround me, the people I've trusted to share my life.

And it occurs to me that there's a lesson there to share. It strikes me that the best advice I can give- to protect you from fatal attacks by any Freeloader in the future- is not to give up smoking or to cut out sugar or to have your regular medical checks. The best advice I can give you is to cut the negative people out of your life.

Ditch the dead wood now, before you hit a bump and they bring you down with their banal comments and deadening sympathy. Drop those dead gum trees before they fall on you.

You don't need sympathy. You need a cheer squad for your homecoming parade. You need people who rejoice in your strengths rather than feeding your weaknesses. Because that will be the way you survive ordinary life, when you come home.

Wednesday, November 14, 2012

An alien in between

Before I came in to hospital I unsubscribed from the breast cancer forum, somewhat disappointed. Very disappointed. Perhaps I should have realised that cancer doesn't change who people are, and so it would be pretty much the same as any other 'women-only' conclave- infected with subtle politics and unwritten rules, unforgiving and a touch caustic if you unwittingly stepped on toes.

Not a place where I would ever fit in with my peers. I am, simply, too frank for most women. Mostly, women like to maintain a patina of delicacy- whether or not it's functional.

And so my forthright way of dealing with my disease isn't right for everyone. I see that. Lots of people cope with their terror by skimming round the edges of things, trying not to look into the abyss. 

But me? I have to stand on the brink and assess the rocks below. It's who I am.

What got me in trouble over there was referring too bluntly to the trajectory of my treatment options. 'Chopped up, poisoned and burned alive' was a little too accurate for some female sensibilities, but a moment of wobbly-kneed weakness and my need to look directly at what I feared brought me to share the most gut-level description of what was about to happen to me.

Hell, surely nobody with the least bit of imagination can look at pictures of mastectomy scars or read lists of chemo side effects and accounts of blistered nipples without realising that the immediate future of the cancer sufferer is going to be bloody confronting. If I hadn't looked hard at all of that before I got on the treatment conveyor belt, I really don't know how I would have coped with the view in the mirror yesterday, when I finally made it as far as the bathroom.


From the neck up, you see, I still look like me. Hey, if anything, I look better than usual; being waited on hand and foot agrees with me. 

From the waist down, well, meh- but it's all pretty familiar too.  

In between, the aliens have landed.

All the proportions have changed on one side of my body. What used to be the widest portion of my anatomy is suddenly the narrowest, giving me a peculiarly pot-bellied, little-old-man shape. The left side of my chest isn't just flat- it looks concave, a crinkled pink moon crater between my jaunty chin and my broad ribs. Suddenly, I'm triangular; my chest seems to shrink into my shoulders.

ET, phone home.

Lifting my arm, I see an emaciated Biafran armpit. There's no flesh in there, nothing at all to spare. It seems bottomless. 

Who is that person in the glass?

Unwelcome words drift through my head. Ugly is the least of them. Deformed is rejected by my kind heart as too cruel to use on the stranger in the mirror, too crude to associate with my beloved Dr G's handiwork.  He is a master of his craft.

This, I know, is the very best anyone could do for that poor creature over there. 


Over the course of the day I look at it again and again. The dressing comes off, and I notice some subtleties that seem comforting. My skin isn't stretched drum-like across the bones beneath. There is some room for salvation. 

Perhaps, if the radiotherapy is not too savage- perhaps there's a chance to build a new curve there, to stretch that little pocket of healthy skin into something softer, something rounder. I don't ask for confirmation of this. I need the belief, for now.

In the meantime, I acknowledge the stranger again and again. Somehow, I have to learn to accept this alien in between. I need to see it as part of me, not as some cruel distortion in the hall of mirrors.

My shirt hangs strangely. I look like my grandmother at 80, wizened and sunken.


For all the strangeness before me, I feel no real distress. I have dealt with being chopped up. I looked it in the eye, well before it jumped out of the mirror to hurt me. I took its power away.

And so I am detached from the strangely mangled creature in the mirror. Looking down at the damage as I lie in bed, I acknowledge that part of me is no longer beautiful- but it doesn't matter. Ten more cancerous nodes were found amongst the 22 taken from my armpit. This is what had to happen. It was never, really, a choice. 

I will find ways to hide my strangeness. I will pull your eye away from it. You won't even see it, I promise you, unless you're looking for it- unless you're strong enough to face the truth of it. I will look forward to the challenge of conquering it; when the time comes, I'll trust in Dr Goodguy's brilliance. He'll find a way to make me feel less strange. 

But for now, I won't pretend it's not ugly, and I won't pretend nothing's changed. And neither, my friends, will you. Promise me that.

Tuesday, November 13, 2012

Being Superwoman

(Written Monday night, in the absence of internet. Girl, disconnected.)

The last few days have been characterised by what my mother would have called 'sick trepidation'. I think I've probably had to wait about two days too long for the mastectomy. Having time to adjust to the thought of losing my breast completely is fair enough, but honestly, having too long to dwell on it just makes everything seem bigger than it really is.

Yes, yes. I'm lucky, I know, that things have come so far in breast cancer surgery. Yes, yes, sure, I can have a reconstruction of some sort later on, if I can get my head around the idea of more major surgery just for vanity's sake. But you know, it just won't be the same. It was a lot easier to think about having one breast reconstructed to get rid of the Freeloader, followed by the other being downsized to match at a later date, than it is to think about having both sides mucked around to hell at once plus a bloody sore graft site somewhere else on my body. How do you get to sleep at night with that many wounds?

Nah, I'm not sure that I'm that vain. (A surprise to me, because I've always assumed I was as vain as hell.) Really, who'd go through surgery by choice? Pain, dependence and Nescafe? Pass.

Knowing you're doing something for the last time is really, really sucky. No breast-pun intended. I had my last shower with two boobs, checked out the view in the mirror for the last time, cooeed the Bear to come and say goodbye too. He's been amazing for the last few days; I feel like he's crawled up Everest, scraping his knees to the bone in the process, and is starting, at last, to see that there's a view on the other side. And if the view is better with an Amazon for a partner, well, so be it. He was less affected by the Last Rites for my breast than I was.

Bye bye, cleavage. Bye bye, short-lived perky D-cup fantasy.

Bye bye, nipple.

Even in the midst of feeling rampantly sorry for myself, though, I was sad for Dr Goodguy too. That remodelled breast was a work of art, healing up beautifully to boot, and now he had to cut the whole damn thing off. What a bloody waste.


Mind you, it's impossible to feel negative for long with Vi around. I was well-medicated with helpless laughter by the time we all set off for the hospital, what with us both making stupid jokes about Amazons, and one day only, 50% off sales, and losing a kilo and a half of ugly fat the easy way. And the Bear was too busy chortling at the pair of us to remember he was heading for a hospital, yet again.

Predictably, the waiting once we got there was a pain in the butt. Fortunately there was an improvement on 11 ½ hours this time, but entertaining ourselves for three hours with decade-old Readers' Digests and a TV screen full of ancient cricket stars trying to be funny was still a bridge too far. Vi booked herself a room in the hospital accommodation so she could be waiting for me when I got out of surgery; the Bear got a kiss followed by marching orders as soon as his eyes started to get that glazed and desperate look.

I'm not good at fasting. After nine hours of nothing to eat, I was starting to recall the time some girlfriends and I went to a health spa and resorted to playing food Scrabble in a desperate attempt to distract ourselves from agony of the 'juice fast' (shudder). That time we gave up and all snuck out early, pouring our pre-paid accommodation fees happily down the drain- not a choice available to me this time round.

I wasn't scared- Dr Goodguy's far too good at instilling confidence for that. Just hungry, and tired of waiting. It was a total relief when my turn came. 

And so to oblivion, and the chopping block.


I surprised myself by feeling nothing but relief when I woke up from the anaesthetic. (Oh, except for the pain in my shoulder where Dr Goodguy had had to secure it at some weird backward angle to get at my armpit.) There was no sense of loss. No sadness. Just total, complete, utter relief.

Seriously, muscle strain is as bad as the discomfort's getting right now, though that could have something to do with the transvertebral block that I'm using to shoot myself full of local anaesthetic every half hour or so. No doubt I'll find out when they take it out and wean me onto normal pain killers.

By the time I was delivered back to my room on the ward, I was as chirpy as can be. My gut said the Freeloader was well and truly ejected; I felt light, and airy, and in control. Me? Sick? Nah!

Mind you, that might all be down to the drugs.

And now the clock's ticking round at half speed. The boredom's a killer. The dependence is worse. I'm not much good at sitting here doing nothing; I'm wired up to drips and drains and puffy stockings, I'm not allowed even to wee for myself let alone reach for the books and tech gadgets in the bottom drawer, and my promised internet access hasn't eventuated. 

So I'm spending a lot of energy being a model patient, pumping my left hand to keep the lymph moving and convincing everyone that I'm superwoman before reality sets in. Seriously, I AM well. I'm not in terrible pain right now, I'm not feeling miserable at all, and it's kind of nice to have absolutely nothing expected of me. I can afford to be gracious and polite, even to the grumpiest member of the night staff (I got even her cracking a little smile within a few hours).

One part of me, of course, just wants to go home. I miss my dog. I miss the quiet. 

I miss my frickin' internet connection.

But the other part of me knows that going home too soon would be a terrible thing to do to my Bear. The last thing he needs is to be thrust into a carer's role again, just because I'm bored and frustrated and homesick. 

I know the bubble will burst. It's probably just as well I'm restricted to bed. I really don't want to look in the mirror yet. I'd like to enjoy being Superwoman just a little bit longer.