Flying to Antarctica

I never sleep well the night before I fly- not for some time before, if the truth be told. I have trouble giving up my illusion of control to the invisible man in the cockpit. It's hard to entrust a stranger with my life.

Once aboard, bag carefully stowed in the overhead locker and seatbelt firmly tightened, I accept that the choice has been made. I'm headed up to the endless acres of rolling white, as much a toy of the gods as Scott of the Antarctic. Perhaps today they'll do what they've threatened for the last 18 months, and kill me for their sport. That would be the ultimate irony.

But the wisdom of Pooh comes back to me. Perhaps they won't. Either way, there's nothing I can do but surrender to the experience. I give in, just as I do before each surgery. I imagine I'm sledding hundreds of miles in a frozen, ethereally beautiful landscape, the numbing snow spreading in infinite dappled contours to every horizon.

It was some small measure of comfort
to travel with Keith Urban on my lap.

And on this occasion, I wonder more pragmatically if I've brought enough warm clothes, because coming from the subtropical Bungy to the chill depths of Victoria might just be a little bit of a climate shock. But it had been notably cheaper to fly with only the Bear's carry-on sail bag; I'd been damned if I was going to succumb to the Jetstar website's siren song and add checked baggage. How much could I possibly need for five days in Melbourne?

*********************

A little back-story. I'd realised some time ago that I just couldn't sit comfortably with the idea of a double latissimus dorsi reconstruction. (No pun intended.) Since I saw Dr Mattel, I'd started to hear louder and louder internal voices screaming that I was tempting fate. God knows I've had enough nerve pain from the surgeries I've already been forced to endure on my upper body; why on earth would I screw around more than absolutely necessary with the sensation and function I had left up there?

No, I wasn't happy with Dr Mattel's advice. It had nothing whatsoever to do with the gradual dawning of awareness that his expressionless face, so impossible for me to connect with, had probably been Botoxed to within an inch of its life. What did it matter if my plastic surgeon was trying to cheat time, as long as he was a great technician? What did it matter if he was as empathetic as an Easter Island statue, as long as I ended up with a great rack?

Who am I kidding? I didn't trust him. You don't tell a patient who's had a life-threatening disease that you wish she was bordering on obese, instead of working to be more healthy, just because that would make your job easier. You don't tell a patient that the timing of her operation will have to work around your skiing holiday, for fuck's sake. I'm a slow burner, but in the weeks since my appointment with Dr Mattel, burn I most certainly did.

Cancel my follow-up appointment I also most certainly did. The fact that no human was available to take my call during normal business hours seemed to confirm my decision. I've had second thoughts, I said to the answering machine; no point being rude. I'm sure he's exactly the right surgeon for some females.

Like, say, Barbie.

But I am not a plaything. The time had come to seek a second opinion.

***********************

Jools had been telling me for some time that she knew some excellent practitioners south of the border, in that great state which the Bear has always called 'Mexico' (to the complete confusion of our less lateral-thinking friends). 'She's gone to Mexico for a few days,' he'd say down the phone when I went visiting, without a single syllable of clarification; the last time I dropped in on my best friend, certain people expected me to return with sombreros and chilli sauce.

But this time I was going in search of something far more elusive than fancy hats and cooking ingredients. I wanted to come back with hope, because I'd decided sadly that if the lat dorsi was the only option, I'd settle for being flat-chested for the rest of my life. It wasn't an idea that appealed very much to a girl who spent her late adolescence balancing her conversational shortcomings with increasing lengths of exposed cleavage.

Nevertheless, it did sound more like fun than having my back muscles excised, exported to Twin Peaks and told to learn to be Laura Palmer's deceased and numb perky bits, instead of holding me upright. Apparently they're liable to spasm now and then without warning while they're being schooled. Tourette's tits don't really strike me as desirable to anyone, except perhaps the sideshow manager at the circus.

Dr Goodguy was completely amenable to the concept of a second opinion. "It's important that you're sure," he'd said when I suggested by late-night email that I might like to front up to the exchange desk at Boobman Carvery. Not for a moment did he ask me to justify the request- confirming yet again that the sun shines out of his nether regions 24 hours a day. Referral arranged, I headed down to Jools' sculptor-of-choice in Mexico City.

On the chosen day for my first encounter with this purported Rodin of the flesh, I walked seven kilometres through suburban Melbourne to get there. Perhaps this was sheer bloodymindedness. It had flashed across my mind that I could choose to drop my exercise routine back a little, to avoid losing any more abdominal weight, but the angel on my shoulder had replied that the Freeloader's always on the lookout for a job opportunity in my body. Perhaps constant vigilance might be a reasonable position, regardless of my desire for new tits of substance.

Sounds fair. 17 kilos gone and counting. Above all- above even the reincarnation of my soon-to-be-extinct boobies- I want to live.

The first encouraging sign was that I only spent twenty minutes in the waiting room beyond the allocated start time. Hoorah! I passed the time with a Facebook friend who happens to see the same surgeon; she too assured me of his worthiness. The stars were aligning.

And then the heavens parted and let me through. I found myself in the company of Dr Yes.

Yes, it was possible to perform double DIEP flap surgery using this amount of abdominal fat. A C cup, or something approaching it, was entirely possible. And given that a patient's entire silhouette would be altered for the better by this procedure- the tummy tucked, the breasts more pert- women often found that they were in fact content with a somewhat smaller cup size than they'd anticipated.

Yes, if I found I really needed to be a D cup he could insert implants at a later date. Mind you, this would negate one of the advantages of this type of procedure- the durability of the new breasts. DIEP breasts last for ever, grow with the patient if weight is gained, shrink with the patient if weight is lost, age naturally, never need tinkering with. Implants have a shelf life (no pun intended). In ten years or so, they might well need to be replaced, and who wants to be bothered with more surgery every decade?

Yes, this procedure would ideally be performed without particular interference with the muscles. Only in the case of unforeseen complications would he attempt a TRAM flap process instead, and use the rectus abdominus.

Yes, it was poor logic to gain weight in the hope of a larger cup size. For surely the aim is to stay fit and well? And on losing the excess weight again after the surgery, the artificially inflated balloons would simply deflate once more and turn into saggy baggy elephant mammaries.

Yes, I would only need to be away from home for a few weeks; I could fly perhaps a week after leaving hospital, which would be somewhere between the fifth and seventh day post-surgery.

Yes, the price included everything from the time I decided to proceed until the moment I was finally completely happy with my new chest. Adjustments, if there should happen to be some asymmetry. Pseudo-nipples added creatively, some three months after the original surgery. Implants later on, if I wasn't happy with the size.

And all this imparted with kindness, humour, sensitivity and an attention to detail which made me realise exactly how superficial my previous experience had been.

Hoorah.

*********************

I emerged triumphant into the waiting arms of my fellow breast cancer blogger, Lisa. It's a treasure chest discovered deep in the sewers of cancer, this making of new and close bonds all over the world as you face your Freeloaders side by side. Thank christ for social media. How else would we survive the emotional battering? How would we ever let out our deepest fears? Aside from Dr Yes, this was the other shining star in the Antarctic sky; I took the chance to meet up with some of the women I've previously known only from a profile picture- women with whom I've shared everything from our cancerchondria to our partner problems to our drug-induced sexual disfunction.

These women know more about this new, cancer-compromised 'me' than almost anyone else in the world. To meet them face-to-face was liberating, heady, exhilarating. We chattered like monkeys on crack. We laughed almost to the point of incontinence, as two of the girls swapped wigs in the middle of a restaurant and caused the spunky waiter to lose his carefully cultivated nonchalance. We fell about again as the same two exhorted some random young women, standing smoking on the sidewalk, to stop before they gave themselves breast cancer. One of my bosom buddies ripped off her wig once more to make the point, sending the youngsters scattering in alarm, teetering like drunken stick insects on their stilettos as they fled.

Sure, it was essentially a business trip- but I had fun.

********************

And so I will return to Antarctica in due course, but not before Dr Goodguy removes both my ovaries and the remaining breast. That will give Dr Yes a level playing field, and it will give me a shorter time under anaesthetic. It's a massively long operation, eight to ten hours, thanks not to its invasiveness- it never goes inside the body cavity- but to its complexity. It's fiddly. It's all about finding, preserving, extracting and then rejoining major and minor blood vessels, so the flap continues to thrive in its new location. Flap death is a very real possibility- but as Jools points out, with the amount of intense exercise I've been doing, it's likely that my abdominal blood vessels will be in superb shape and the transplanted flesh will have the very best chance of survival.

Hoorah.

********************

And this I know: when the time comes, about three months after the second mastectomy, I'll have plenty of visitors. These days I can fly to Antarctica in almost any direction, and still find enough true friends to keep me warm.

A gypsy, a ghost and the function of swear words

Every family has its personal volume of mythology- the book of stories passed from generation to generation, handed down like Chinese whispers till they become some sort of mutant truth. In the end nobody's quite sure what was part of an original tale and what was a verbal embroidery by some canny descendant, a little baroque trill designed to catch the listener's ear.

Such is the story of my mother and the gypsy. I remember her telling someone- friend or relative? I can't remember- over the top of my head that she'd visited the fortune teller's tent at some country fair when she was a young woman, and everything the gypsy had said to her on reading her palm had come true.

She was very clear on that. Everything.

I was very young, mind you; my memory may be flawed. Perhaps it wasn't a country fair. Perhaps other parts of the story have been embellished by time. But I do remember her spreading her fingers out to scrunch up the side of her hand, showing the two little lines that represent my brother and me- the two living children she was yet to bear back then.

This I also remember: after my mother died, her brother's wife- one of her closest friends- told me that all her life, my mother had been terrified of dying of cancer. Twenty seven years later, I put two and two together and wonder if that gypsy was guilty of the sin of too much information.

My friend Vi, if you recall, read my palm a few weeks before I was diagnosed and told me I was about to bear a huge burden; she saw it crossing my life line. "But the line keeps going," she assured me. "You'll get through it."

Perhaps my mother's life line stopped at that crossing of the creases. Who knows? I shan't pretend it's truth. It's extrapolation. But something had put the fear of death by cancer into her head, long before her own mother succumbed to the silent tumour in her breast.

And when I ask Vi why she doesn't read palms and tarot for a living, given that she seems to have a gift for such things, she replies "I only see the bad stuff." What, indeed, is the point of telling people about the bad, inevitable stuff ahead of time? What do you do if you see a person's death? Do you lie?

Yes, you do. Fuck you, gypsy. I don't care how right you were.

*****************

I reflect on all this now, as the shock waves from my BRCA2 result finally hit me. The faulty gene that my grandmother and my mother (and perhaps others before them) carried and passed on to me was discovered a mere five years after my mother died of ovarian cancer- that sneakiest of ticking time bombs, the one that gives only the vaguest symptoms until it's far too far advanced to be curable.

The time frame seems unbearably cruel to me as I reflect on her last few years, repeatedly visiting the doctor with terror in her eyes, repeatedly being rebuffed as a hysterical woman with psychosomatic symptoms. The research must already have been in the pipeline. Five years later, and somebody surely would have smelled a rat.

*****************

So in the end it was my mother's ghost that reduced me to tears over my diagnosis. I could never bear injustice. To think that she had that goddamned gypsy's prediction jammed in her consciousness all her life, that when the vague symptoms hit she fought so hard to be heard but nobody was listening, that she was right all the time, that there was a scientific explanation right there but nobody at the coal face knew-

-yes, that makes me cry.

******************

The tears have been slow to surface, and as ever, they don't seem to be about me. Anger and fear are a different matter. I woke up a few mornings after I wrote my last blog post thinking every cell in my body has a mistake in it.

It wasn't a particularly palatable thought, and I didn't really know what to do with it. By evening my preferred coping mechanism had chipped in, and I replaced my Facebook profile picture with a mutant cow.

As you do.

Naturally, cancerchondria arrived in the wake of this realisation, as night follows day. The sudden painful twinge in my right armpit- the good armpit- while I was doing star jumps as part of my exercise routine was enough to throw me back into shitsville. I remembered having twinges in the left breast and armpit before I was diagnosed; I passed them off as nothing, because they went away very quickly. Until next time. Now I realise my body was probably trying to alert me to the invader.

Was there an invader on the right too? Did my recent clear mammogram miss something in my armpit? Was the Freeloader laughing at me again?

Naturally, it's all bollocks. I had an ultrasound as well as a mammogram, and it was very bloody thorough. And hello, I've had enough chemo to kill a black dog. Dr Mellow went over me very thoroughly indeed at our appointment last week- it seems that a BRCA+ diagnosis comes with a thorough pelvic as well as breast palpation- and declared me to be in great shape and looking astoundingly well.

But you wonder. Just for that moment, you wonder, and it can send you nuts if you let it.

Then there's the pending surgery. My discomfort with the idea of having a lat dorsi reconstruction has ebbed and flowed. Some days, I'm confident; trust the doctors, they've done you proud so far. Other days, the voice in my head screams trust your gut- you know you regret it when you don't.

I've never been good with decisions unless I make them instantly, based on my gut feeling. Otherwise I go to and fro, balancing, balancing, balancing. Seeing both sides. Vacillation has become my personal art form. And this time it's not just a wavering that will eventually settle one way or the other- I feel totally bamboozled, because it seems like my choices are no boobs at all or massive invasive surgery on my upper body, with relocation of two major muscles.

And there's pressure to decide, which never helps. The time bombs are ticking.

Time for a second opinion, methinks. And maybe even a third. I expect Dr Goodguy is enough of a good guy to give me another referral. It's my right, I know, but it still makes me feel bad, to question his choice. I'm sure Dr Mattel is a very fine technician...

...but then, there's that gut feeling.

It makes me angry, to be in this no-win place. It makes me infinitely sad, that my Bear has to put up with my constant moodiness, that he'll have to live with the physical and emotional fallout from whatever reconstruction decision I eventually make.

********************

So what do you do with all that sadness and anger? There's only so much therapy a girl can afford, and it's not like it makes the daily ramifications go away.

Maybe you swear a lot. I know I do. So many of my friends are doing it tough right now, and we're all hurting for each other, and because we've been through the mill we've learned what not to say. Sometimes swearing is all we have left to express what we do need to say, which is pretty much reduced to how the fuck is this fair?

Sometimes the only empathy needed is a well-chosen swear word.

One friend has just discovered that her hair loss after chemo is permanent. My heart absolutely breaks for this gorgeous, smart, funny woman. But once it's confirmed, you don't say to an unwillingly bald woman who used to have stunning, flowing, long blonde locks, you're still beautiful to me. You don't say you're always beautiful inside. You don't offer up solutions like hats, wigs, hair transplants, head shaves, tattoos and acceptance as though that's some sort of answer to her loss and grief and anger. You don't tell her to be grateful she's still there for her kids.

What is there to say to her but shit, shit, SHIT.

Another friend's much-loved partner of 22 years collapsed and died a mere five days after he was diagnosed with terminal cancer. You could have a few months, the specialist had told them just the day before.

I didn't tell her it was all for the best. I didn't reassure her that he was in a better place, or express relief that he didn't suffer for long, or any of that mealy-mouthed, well-intentioned bullshit. She texted me that he was suddenly and unexpectedly dead, and I texted back fuck.

Because that's what that word is for.

That, of course, is not all I said, but I'll spare you the blasphemy. We've known each other over forty years. We know that the best way to offend either of us is not with a swear word, but with a platitude.

And so, here's the thing: the doctors who ignored my mother's symptoms were a pack of arseholes. Being BRCA2+ is another serve of shit. And Facebook needs a button that says

Two dozen double damask dinner napkins, and other inheritances

When my brother and I were little, my mother would occasionally launch into a rendition of a tongue-twisting comedy routine she'd learned as a child herself. It was, I suppose, the 1960's equivalent of reciting the Monty Python parrot sketch, and it would usually reduce us all to helpless giggles. You can hear the whole thing here:

Two Dozen Double Damask Dinner Napkins

I was mildly amused by the verbal acrobatics of the tongue twister, but much more so by watching my mother's own amusement with the whole routine. "Danner nipkins," she'd splutter. "Donner nupkins." And finally, "Oh blast, give me 24 serviettes." And she'd fall about.

Given that this sketch was recorded for radio when I was minus 24 years old, and I never once heard the original until I Googled it tonight, I consider it part of my family's oral tradition- a piece of inherited verbal art.

How ironic, then, that this very piece of my mother's cultural estate should have been brought into my mind yesterday as I waited to consult the plastic surgeon. There I sat, worrying that I was wasting my and my surgeon's time- because, one day short of the promised eight weeks from my blood test, I still hadn't received the results of my genetic test for a faulty BRCA gene. Yep, the one I may also have inherited from my mother.

And without the result, we had no map to guide our next part of the trip down the Freeloader Freeway.

*********************

Dr Mattel was young, handsome in that swarthy Bollywood way, confident, smooth. And desperately tired. I could see it in his eyes as he darted from room to room, being unfailingly polite and charming to every patient as he strove to be in two or more places at once.

I sat in that waiting room for nearly two hours, after driving for nearly three hours to get there, while he dealt with complicated case after complicated case. The receptionist apologised repeatedly for the wait; "It's not usually this bad," she flustered. I just smiled sweetly and gave my stock response, the one I learned from the Bear many years ago in my pizza shop kitchen as I attempted to deal with an impossible number of diverse orders as quickly as I could on a bench the size of a playing card.

"It takes as long as it takes," he'd say calmly from the sink, where he was ploughing placidly through scouring a ridiculous number of dishes anointed with dried melted cheese. And I'd remember to breathe, and discover I was thinking better already and making fewer mistakes.

"It takes as long as it takes," I replied to the sweetie behind the desk- because if you don't want to make mistakes, it does; and I think she would have kissed me if she could have reached me across the schmick polished acres of counter.

********************

At first it didn't bother me, this ridiculous wait. I'd learned to bring something to do months ago, as soon as I'd worked out that every doctor's waiting room contains exactly the same supply of ancient and crappy women's magazines peppered with one or two huntin', fishin' an' shootin' rags to cater for any stray Y chromosomes. I pulled out my library book and immersed myself happily in a Vonnegut I'd somehow managed to miss reading in my quirky-grim-touching-humour period.

BRRRRRRRRING, shrilled the phone of the gentleman to my right.

Note: I use the word 'gentleman' with a certain clenching of the teeth. He was, clearly, the Partner of Barbie, who'd entered Dr Mattel's inner sanctum with him some half hour ago; possibly his surly presence was distracting, as he'd rapidly been ejected back to the waiting room.

"Have you chased up that invoice yet?" he hollered.

(Because, as you know, the trick of using a mobile phone is to shout so the words travel faster and further. Right?)

"Well where is it? Find it. They owe us money. How long since they paid us? When? Well find it."

(And it's important to hang up with a flourish as though you're poking an enemy's eye out, right? Because, as you know, these days we really have no proper equivalent of slamming down the receiver.)

I returned to Vonnegut. Where was I? That's right, trying to distract myself from the uncertainty of not knowing whether I was going to have my stomach, back or chest sliced open in the near future.

Or some creative cocktail of the above.

BRRRRRRRRRRIIIIIIIIIIINNNGGGGG.

Another one-sided fortissimo monologue, stage right. Clearly, the entire Australian economy was in mortal danger if this man's invoices were not found and paid instantly!

POKE!

(Insert thirty seconds of silence.)

BBBBBRRRRRRRRRRRIIIIIINNNNGGGGGGG!

And so on, and on, and on. Gentle reader, I was in that waiting room for nearly two hours, remember? It was a generous waiting room, for sure, but not so generous that this constant shrilling and screeching wasn't appallingly intrusive.

And then it happened.

BBBBRRRRIIIIIIIIIIIIIING!!

"What month did they pay? And what about the dinner napkins?" squarked Mr Congeniality.

Gentle reader, I started to giggle. I stuck my nose deeper into my book, pretending it was the sole source of my lack of control.

"Well find the dinner napkins!"

Unable to restrain myself further, I snorted, my shoulders shaking helplessly. Ah me, not diamonds after all... not gold bars?

Around this point, Mr C. finally noticed me, but he was still deep in conference, saving the economy single-handed.

"Well which dinner napkins were they?"

By now I was roaring with laughter. I couldn't help myself. I was cackling so hard I was crying. Every time he said dinner napkins- and he did so repeatedly- I exploded all over again. And sorry, but in the end I had to look at him, and I didn't even care that I may have seemed rude. It was taking every vestige of my shattered self-control not to interject "double damask donner nipkins, surely?"

And miracle of miracles, the penny dropped. He may not have blushed- he was far too brash for that- but he stood up and took his fucking phone outside.

Small mercies, my friends. Small mercies. At least it stopped me from thinking about being rearranged with a scalpel.

*********************

Dr Mattel also apologised. "Every case this morning had a complication," he sighed. Eating nuts out of a glass tumbler.

"Late lunch for you today," I smiled. It was already well after one o'clock.

"No lunch for me. Just nuts."

And that, I suppose, is the life of a doctor.

*********************

And so to business.

If you don't know how breast reconstruction works, the simple explanation is that you have three choices.

You can have the skin across your chest stretched with internal balloons which are gradually inflated with saline, until you've got enough loose skin to put implants in. That doesn't work too well on cooked skin- think of the way a sausage skin explodes when you cook it too fast and the insides expand faster than the skin can cope with, and you're getting the (very unsavoury) idea- so given my radiotherapy treatment, that's out for me.

You can have your tummy fat cut out- effectively, a tummy tuck- and turned into one boob, or even two boobs (possibly with implants behind them) depending on how well-laden with lard you are and what cup size you're aiming for. That's called a TRAM or DIEP flap, and it's what I had my heart set on. It's major, all-day surgery, but you end up with a soft boob that feels like the real thing to your lover (even though it has absolutely no sensitivity to you) and doesn't hurt to lie on if, like me, you often sleep on your front.

Or you can have one or both of your lat dorsi back muscles removed and brought around to the front of your chest, where they'll make the basis of your new breast/s in association with those balloon things (they're called expanders). Again, there's the inflation process to put up with- it can be painful- and eventually your balloons get replaced (more surgery) with implants. They look fine when you're standing still, but they're Barbie breasts; they're hard and they don't move with your body. I've never liked the idea of the lat dorsi procedure, for numerous reasons. I mean, front chopped up- back chopped up- how the hell do you sleep?

But it wasn't really up to me. I was here to find out what was possible.

There is something deeply unnerving about being looked at as a lump of play dough, about to be forcibly rearranged into a different shape. God knows I've had my naked torso inspected by enough doctors over the last 18 months to be immunised against modesty, but this was truly creepy. I was photographed, turned, squeezed, photographed some more.

Squeezed some more. Particularly my much-reduced tummy.

"I would prefer you had more fat here," quoth my doctor.

And that is a fucking first.

**********************

Laugh all you like; I was actually deeply upset, especially when I was told that it would be better if I hadn't lost the the 16 kilos I've managed to shed through daily exercise and healthy eating since I was diagnosed. Because, you know, being overweight and being sedentary are actually proven risk factors for cancer recurrence.

"For a flap procedure, I'd really prefer you were about 10 kilos heavier," he went on.

"Hang on a minute," I spluttered. "What happened to healthy living to reduce your risk of recurrence? I've worked really hard to lose weight and get fit. You're telling me I should have stayed fat? Personally I'd rather be alive."

He shrugged. "We have barely enough skin and tissue there to make a C cup, let alone anything larger. If your test results come back positive and we have to make two breasts from this, I'm not sure I could even make A cups from this."

"The lat dorsi is a better choice for you," Dr Mattel went on. "It gives a better result in any case- you get better symmetry if it's a double, too."

"I don't want my back muscles messed with," I whined. (Well, I'm sure it sounded like a whine to him. To me it was more of a whimper.) "I play the piano. I don't want my strength compromised."

"The only activities that are permanently compromised by the lat dorsi procedure are competitive swimming, notably butterfly stroke, and mountaineering," he countered. "Anything that requires pulling yourself upwards with your arms needs that muscle. Otherwise, other muscles will take up the load. And I don't scar your back if that bothers you. I can go down your sides under your arms, or place the incision along your bra strap lines. Or you can try to gain some weight before we do a TRAM or DIEP procedure. Or we can do a flap surgery and you can come back when it's healed and have implants put behind it to increase the cup size."

So much choice. Everything but what I wanted. I felt like a vegetarian at Yum Cha.

*********************

I drove home feeling tearful and angry- not so much at the doctor himself, who was just a somewhat insensitive messenger, but at the universe. How the hell was that fair, that I could work really hard on my health and increase my chances of survival, but in the process cruel my chance to have a normal, soft-feeling boob after reconstruction? HOW WAS THAT FUCKING FAIR?

But then, as a wise teacher used to say to me many years ago, "When did I ever pretend to you that life was fair?"

When indeed?

**********************

So I spent last night moaning about Fate, leaning on my support group friends until my Bear arrived home and I could lean on him instead.

"It's you I love, not your boobs," he said, holding me tight.

"But you always loved my boobs," I sobbed.

"They're a wonderful thing, but I'd rather have you," he replied, squeezing me a little tighter.

He's a good man. He really is. And for a taciturn Aussie bloke, he does have a wonderful way of finding the right thing to say in a crisis.

********************

By this afternoon, it was all irrelevant anyway. Just one day too late, and eight weeks to the day from my gene test, the results came in.

I wasn't really surprised, in the end, to find out I'd tested positive for BRCA2. The professor had made it pretty clear that my family history was screaming genetic mutation at me. I felt completely calm as I talked it through with the genetic counsellor; Coping Ice Maiden Candy had taken over on cue, simply looking for the next sensible step in the process.

If the truth be told, I was relieved. The decision had been made for me. I didn't have to play Russian roulette, deciding without the appropriate information whether to have the other breast removed just in case. An inconclusive result would have been much harder to deal with.

The Bear was less calm. Much less so. As I suspected, he will need to grieve the loss of his playthings, whether or not it's me he loves best.

**********************

So, double lat dorsi it is. The other breast has to go; there's no particular rush, given that I've recently had a clear mammogram and ultrasound, but I'll try to schedule it for August and combine it with the lat dorsi reconstruction.

More urgent to me is that my ovaries and fallopian tubes need to go. I've already rung Dr Goodguy's surgery to ask for an appointment, which was treated as an urgent request by the ever-so-efficient and understanding receptionist. The trouble with dodgy ovaries, you see, is that the signs of trouble are so nebulous. A lot of ovarian cancer is diagnosed way too late, just as it was in my mother. So the sooner the better, say I; it's not a big deal, just day surgery, so if I can get that scheduled well before I go on tour as an Early Childhood lecturer during July, I'll be happy.

And I've rung my son and my two cousins on my mother's side, and emailed my brother. All of them now qualify for a free test to see if they've inherited the time bomb too. Yep, even the men; they can be carriers and pass the dodgy gene to their kids, but men are in the BRCA2 gun sights too. There are links with prostate cancer and pancreatic cancer. And hello, men have breasts.

That was pretty tough, making all those calls. Who wants to be the bearer of tidings of anxiety and stress? But they need to know sooner rather than later. Both of my cousins have children. They need to know if there's a red laser dot on anyone's forehead so they can tell them to duck.

It's better to know.

*******************

So. From my mother I have inherited my way with words, my sense of humour, my diplomacy, my connection to children, my talent for teaching, my artistic eye, my tiny hands, two dozen double damask danner nipkins and one faulty, lethal gene.

Probably, on the balance of things, that's more than fair.

Bandwagons, bait and a seven dollar poppadom

All my life I've had a problem marching to somebody else's drum beat. I used to list one of my hobbies as jumping off bandwagons- not just to generate laughs (though it did), but because it was a truth about my compulsive reflective practice that I'd understood for a long time.

See, the trouble with bandwagons is that people stop thinking. They jump on because it seems like a good idea at the time, or because everyone else is doing it; once they're there, it's comfortable to just blend in without question. Because, Peer Pressure.

Ah, the Power of the Flock. And the flock mentality around cancer fundraising is particularly strong.

The desire for a symbolic table-turning on the Freeloader- yes, it's almost overwhelming, and it seems to be pretty well universal. So many times I've heard my fellow players in the cancer tournament express the desire to do something that turns their personal shit sandwich into something closer to a plate of chocolate brownies. In the end, many of them pour a lot of energy into positive, constructive activities like painting the entire world pink and walking in endless circles.

Because, Cancer.

I know, I know. Call me a cynic. But my reflective mind will not allow 'Because, Cancer' to get even as far as first base without a drug test. ('Because, Peer Pressure' never even made it out of the team dressing room.)

**********************

Lawrence of Arabia

Don't get me wrong. I have no wish to call universal bullshit on cancer fundraisers- not at all. Full disclosure: last Saturday night I too walked in endless circles, as part of the 20-hour local Cancer Council fundraiser marathon known as 'Relay for Life'.

And I'm proud of what I did, and of what we did as a group. I'm proud to have been part of the effort that extracted a significant amount of money from a community where hundred dollar bills aren't exactly lying thick on the ground.

We need the fundraisers. We do- desperately. It's bleedingly obvious that as long as most taxpayer funds are poured into shoring up politicians' retirement schemes, buying anachronistic weaponry to fight unnecessary wars and destroying the environment to keep up with the Joneses, we'll have to fund most of the research ourselves.

And that means getting people onto that damned bandwagon. And that means putting out people-bait. And people-bait means lots of hard-working, dedicated people tirelessly creating these gimmicks, because they need to do whatever works.

I accept all that. I accept that getting people to put their hands in their pockets and come out with something other than a used Kleenex is an art form requiring a certain knowledge of the baser aspects of human nature. (You know, the aspects that keep Joe and Jenny Average avidly viewing The Biggest Apprentice Block-Loser and anything about the Kardashians. Please pass me that large brown paper bag.)

But me? I can't help critiquing my actions, and the actions of those around me. I yearn for authenticity, and I strive for consistency in my professional actions. I hate being a hypocrite, and I can't abide it in others.

And so last Saturday night, as I walked round and round in circles for quite a large part of the 20 hours- oh wait, 21, because of course I had to do it the year it coincided with the end of Daylight Saving- last Saturday night I found myself examining the whole concept in detail.

It started with a seven dollar poppadom.

**********************

I am, I admit, a little bit of a food snob. You know, to the extent that I prefer my food to be edible- particularly when I've just walked far too many kilometres in 30 degree heat and it's a good eight hours since my last proper meal.

So when the woman running the Indian food caravan lifted the lid of the bain marie and exposed the vegetarian curry that I'd just paid seven good dollars to have slopped onto my plate with the might-as-well-eat-cake jasmine rice- hunks of deceased khaki and cream vegetable matter in a sea of curry-coloured hot water- it was, um, a little shattering.

I'd chosen the vegie curry purely on nutritional grounds; it seemed to be the only vegetable matter available at the entire venue. But in the end, the only thing on that plate that was edible was a lonely and anorexic poppadom, which in terms of nutrition was basically a slice of hot, crisp flour dripping with cooking oil. As I crunched it sadly, my stomach rumbling, then dumped the rest of the loaded plate unceremoniously in the bin, I reflected on the peculiarly inappropriate food available to cancer 'survivors' (and I shall get to that word later) at a fight-to-end-cancer event.

As I looked around the grounds at the other choices, I realised that the high-GI jasmine rice and cooked-to-nutritional-oblivion vegies were the high point on an increasingly slippery slope. The sausage-sandwich and bacon-and-egg-roll tent seemed to have missed the Cancer Council memo about processed meats, high fat foods and empty-calorie white bread. Everywhere I looked, people were selling sugar hits- cupcakes, lollies, soft drinks. Even at the afternoon tea for 'survivors', I'd been offered plate after plate of white bread sandwiches and sugary dessert slices; some high quality fruit platters were the only 'on message' food in the building.

Sitting there wearing my 'survivor' sash and reflecting on how hard I'd worked to change my personal eating habits, I was surrounded by wall to wall WhatTheFuck. And I asked myself, to raise funds for cancer research, do we really have to offer people the exact foods that are contraindicated?

Because, Logic.

************************

And you see, I've just jumped off the bandwagon again. The message of the opening and closing ceremonies, alongside remembering lost loved ones, was overwhelmingly expressed as a positive. Hope had a separate ceremony all to itself. And here I am jumping off the positivity wagon and finding fault, when perhaps providing this sort of crap food is a really good way to make lots of money.

Is it wrong of me to suggest that a level of hypocrisy was accepted without question? I put this idea forward with a sense of trepidation. So many people gave their time, their efforts, their peace of mind to make the event a success. Already over $100,000 has been raised, with funds still to come in. This is, without doubt, a huge achievement in a financially challenged country town.

Does it matter how it was done? Do we have to stay on message all the time? Is that a reasonable expectation?

To me, it would have been more considerate to provide at least some healthy food choices for the many participants who've been deathly ill and who are now trying desperately to stay well. I walked those many circles fuelled only by determination and the small bag of dried fruit, unsalted nuts and plain dark chocolate I'd had the foresight to bring with me. Because, Bushwalker.

Am I a lone logical voice for health in a wilderness of economic realities? I honestly don't know. Sometimes I feel like an intruder from another planet.

************************

And then, the 'survivor' sash. Again, I'm an alien.

A very large part of me spent the day and night wanting to tear it off and run around screaming WTF, we don't know whether we're survivors until the moment we die of something else. It felt like a lie, walking around with that word across my body.

Worse, it felt like I was tempting fate. All I could think of was my friend Lyn, who'd been pretty much at my stage of 'survivorship' when she started throwing up and falling over thanks to the brain mets.

A small but stubborn part of me, however, knew that the people who'd worked terribly hard to make the event a success would be deeply hurt if I decided to start a one-woman rebellion. And so I'd better shut up and put up. Or rather, put on.

So I did. Because, Compassion. Consideration. Kindness.

I've survived the first diagnosis, I rationalised. I've survived the first year out from chemo.

For a compulsive honest, deeply reflective person, it was a confronting experience.

**********************

I wish I could say that I got over it, and remembered what we were trying to achieve, and everything was fine and dandy. But that wouldn't be true. My discomfort increased rather than settling. As the night went on and the speeches burst forth in all their hopeful glory, I became aware that only two categories of cancer patients were being recognised.

The 'survivors'.

The dead.

And I thought but wait, what about all the people with Stage Four disease who are still here?

Were they even invited?

It made me terrifically sad.

You see, people with Stage Four are off-message. They don't fit in with the whole fight-back We-Will-Eradicate-This-Disease-By-(fill in suitable close but suitably distant date) message of hope, because there's this uncomfortable awareness that most of them will probably be dead by then.

But they're not dead yet either, so they can't be slotted into the It's-Okay-To-Cry message of remembrance.

Should we pretend they don't exist, in the interests of fundraising success? Because, Awkward.

*********************

Unfortunately, I can't and won't buy that for one nanosecond. This far into the game, and running a support page as I do, I've grown close to a number of women with a ticking time bomb inside them.

They're still here. They want and need to be acknowledged; they deserve to be acknowledged. They're my friends, and I can't just sit here on a bandwagon that ignores them simply because they're awkwardly off-message.

Something needs to change. Because I know full well that this is not a situation exclusive to this event- it seems to be consistent across the board in cancer fund-raising. To be Stage Four is to be on the outer.

And when a dying woman declares that she'll have no pink worn at her funeral- not a single pink item on anyone- because she's so furious about the exclusion and the sense of being a failure for not toeing the 'curable' line, then it is time to call bullshit.

Lookin' at you, Amanda R., up there with the stars in the beautiful night sky. Because, Remembrance. And this is a relay, and I think you just handed me the baton, even though I am not classed as 'awkward' myself. 

Yet.

**********************

Perhaps after writing this I'll not be invited back to another Relay event, despite ending up as the impromptu Master of Ceremonies for this one and giving a sincere speech in support of the Cancer Council which was very well-received. I did enjoy being the MC. I did enjoy delivering my speech. While I was doing that, it felt completely authentic and I felt like I was doing good, contributing to the effort, going the extra mile.

I hope I do get invited back.

I hope that I can somehow help make some changes. Would it be so hard, really, to make the sandwiches on whole grain bread? To limit the number of teams selling sugary crap?

Would it be so hard to consult with Stage Four patients, to provide wheelchairs or comfy chairs or transport if necessary, to find a word for their sashes that sits well with them? If 'survivor' and 'carer' are the only options, it does feel like active exclusion.

And I'd happily volunteer to make the speech that acknowledged the presence, the very existence of people with terminal disease. Perhaps it would do everyone good to hear 'anger' acknowledged as an emotion that needs to be released, along with the tears of remembrance for those who've already crossed the finish line.

I could do that.

********************

It's two years to the next Relay. Perhaps by then I'll have the energy to follow up these reflections in an active way. Right now, the thought of being on any sort of committee makes me want to dive into the ocean and swim to New Zealand.

Till then, all I can do is be the change I want to see.

Eat well, and help others to do the same if I can.

Hold my hand out to my Stage Four friends, be listening, help them to insist on their rights.

I can do that. Because, Voice. Leader. Creative. If I must insist on jumping off bandwagons, the least I can do is start making a better float and join the parade.

A matter of trust

There have been times during this trying period of my life when I've felt truly lucky. Weird, right?

Mostly that's when I look around me at other women dealing with the same shit, but without the same medical team. You have to be able to put your faith in your team. Without a team you can trust, you live in constant anxiety.

Are they really as good as they make themselves out to be? 

Have they chosen the right treatments for me? 

Do they actually give a rat's arse what happens to me, or am I just another random digit in their statistics?

And while some patients fret and tremble, I've been fortunate enough to add yet another quietly competent gun to my locker. The same day that I was able to slot into a cancellation and see my personal therapist, I'd been heading up the coast anyway; finally the stars aligned, and an expert had time to talk to me about testing my genes for BRCA faults.

Some people can exude busy-ness and competence while strolling languidly down the corridor. Such was Professor Darkhorse. He passed me on his way back from lunch as I sat stabbing a trembling finger at my new and mystifying SmartPhone, desperately trying to distract myself from thinking about what a genetic test might reveal, and I knew immediately that this was my man.

Yes, he explained quietly when my turn came, my family history definitely qualified me for a free genetic test. Twice over, actually; the crucial number in NSW is a 10% chance of having a dodgy gene, based on how many close family members have succumbed early to breast or ovarian cancer. My chances of having a faulty bit of wiring in the system, he told me, were over 20%. I'd even have qualified in Queensland, where the parameters are far less generous.

A one-in-five chance of having one of the BRCA genes wasn't actually something that filled my heart with joy. I don't actually want a positive result. Who would? I want a negative result.

But as Darkhorse so clearly and patiently explained, there's no such thing as a negative result.

Great.

I could get a positive result- oh yes. That much is clear-cut, and that would be a signpost for my medical team to tell them where we need to go next to keep me alive.

Enter masked man with scalpel, stage right. Weeping from the gallery.

I could also get a result which shows that I don't have the BRCA 1 or 2 genes, but they don't call it 'negative'. Chances are that, with that sort of family history, I still have a faulty gene- but it's one that hasn't been identified yet. 'Inconclusive' is about as close to negative as I can hope to get.

Sheathe scalpel. Enter roulette wheel.

And then I could get the medical equivalent of 'Hmm, that's odd.' Which translates as having some minor genetic peculiarity picked up which doesn't rate as weird enough to be a mutation, but which will be noted in the statistics and kept on record; if enough people with breast cancer turn out to have that minor peculiarity as time goes on, it might be another risk marker to add to the BRCA genes.

Enter Paranoia, hysterical.

So. Qualifying for the free test is not really such great news. It could herald some hard decisions, or continual nagging uncertainty.

**********************

This is what will happen if my test results come back positive.

The other breast comes off.

Exeunt nipple sensitivity. 

The ovaries come out.

Enter madwoman, screaming at shadows.

My reconstruction becomes significantly more complex. Simple mathematics: one stomach flap (ironically, now far less abundant thanks to my cancer-driven healthy living program) divided by two new breast mounds just isn't going to equal two D-cups.

Enter silicone implants; exeunt stomach-sleep. Further weeping from gallery.

Did I mention that cancer sucks?

I have to wait six to eight weeks for the results. I think I shall just try to forget it ever happened. Wish me luck with that.

**********************

In better news, I saw Dr Goodguy yesterday for my six monthly checkup. He was again touchingly pleased to see me looking so well, and quickly gave me an uncompromisingly clean bill of health for the bomb site and my dodgy armpit full of scar tissue.

(Scar tissue can feel distressingly like a lump, to an amateur.)

"And your mammogram and ultrasound came back absolutely fine," he added.

(So those dots I saw when I craned my neck to look at the screen weren't new Freeloader beds after all. They looked the same to me...)

It was all something of a relief; mostly I can get my head involved with other things and forget the nagging worries. But sometimes you wake up at 3am with something aching, and your brain goes nuts.

I'd come to his office straight from my appointment with Miss Sunshine the lymphoedema physio, and she'd gone most of the way towards putting my mind at rest about the nagging pain around my protruding ribs on the left side.

Yeah, protruding. They stick out. You take the weight of a very large breast off your rib cage, and it goes whoopee! Let's party! and expands to the point where it's pulling the hell out of the muscles that keep it in place- and to top all that, you keep bumping it on things. Not to mention the agony of wearing a bra on ribs with no flesh protecting them.

And then you realise it's hurting there, and your brain starts misbehaving again.

"There's been so much damage there from the surgery and radiotherapy," said Sunshine comfortingly. "You'll have all sorts of muscular and nerve pain happening."

And proceeded to give me a somewhat agonising but much-needed work-over on all the dodgy bits. My ribs. The back of my upper arm. (Wow, did she find a sore spot in there; there was a cord so tight we could both feel it twanging every time she rubbed her firm torturer's fingers over it.) The middle of my upper back, and under my shoulder blade. Up the left side of my neck. Into the back of my shoulder joint.

All of it is directly traceable to the hell inflicted on my upper left side over the last year and a half. Fixing breast cancer's not as simple as just chopping off a boob, replacing it with a lump of silicone and Bob's your uncle, folks. My shoulder area's screwed for life. Every time I think I'm through it and start forgetting to do my exercises and stretches, it bites me. Sleeping comfortably all night is a thing of the past. I still can't rest on that side or I suffer all the next day in bloody agony.

Shut up, Candy. Whining doesn't help.

*********************

And hallelujah, at the end of my surgeon's check-up Dr Goodguy finally scheduled in some time to write me a referral to a plastic surgeon. He's been putting me off about reconstruction for a good sixteen months now, every time saying that we needed to let my chest recover from treatment to get the best result.

My god that time went slowly. 

My relief must have been as palpable as my remaining breast.

"I'm so tired of my sarong falling down," I offered wryly, leaving out the bit about bursting into tears all over again every time it happens.

His face fell.

"I tried to leave you with two," he said. And I thought, my god, he actually remembers and cares. And felt terrible for even bringing it up.

"It wasn't to be," I said. Trying to make up ground. "Better to have it off and be sure."

Which is true; but clearly Dr Goodguy was just as proud of his skilful effort to reconstruct my boob after cutting the cancer out of it as I was impressed by his expertise.

Damn you, Freeloader. Did I mention you suck?

***********************

I am just so damn lucky to have him as my surgeon. He's referred me to a plastic surgeon I've never heard of in my life, rather than the one I'd set my heart on, but if Dr Goodguy says that this fellow's at the cutting edge of new procedures and that's where he wants me to go, than that's where I'm going.

If they could bottle trust and prescribe it for breast cancer patients, we'd all feel so much safer. I hear horror stories about women who have bad experiences with their doctors and end up lacking trust in their medical team. Some of them do themselves all sorts of mischief courtesy of Dr Google and 'natural remedies', or get taken for a ride financially by some charlatan who reckons they can cure cancer with the left eyeball of a frog extracted by moonlight and juiced with the blood of a rabid leech <ching!>. Or something. And then the poor women find they're even sicker than when they started, as well as broke and feeling stupid. It's tragic.

Not me- my first stop after diagnosis was Dr Goodguy, and I trust him implicitly. If I do end up having to have a double reconstruction, then I know I'll be going to a plastics man who's going to somehow make it all work for me rather than creating a bomb in my chest. Because that's the sort of doctor Dr Goodguy is. He actually does care about that stuff- women's self-image, and the importance of the patient being as happy as she possibly can be in the middle of this crock of shit. So I know he won't be sending me to some narcissistic shark who thinks that my next surgery is just a way to put his kids through private school.

And that, my friends, most definitely does NOT suck.

Ground Control to Major Tom

Those of you who've never experienced a cancer diagnosis may now be suffering under the misapprehension that we've reached 'mission accomplished' here. In October 2012 I was launched into a dangerous orbit whence I might not return. But here I am, in March 2014, back on Earth at the end of my (obvious) treatment and apparently safe and sound.

"You're looking amazing!", people say to me. "You look great!"

Am I? Yeah, I guess so...

And I'm reminded of the startling last verse of that Bowie song-

Ground Control to Major Tom,
Your circuit's dead- is there something wrong?
Can you hear me, Major Tom? Can you hear me, Major Tom?
Can you hear me, Major Tom? Can you...

....Here am I floating in my tin can,
Far above the moon,
Planet Earth is blue and there's nothing I can do...

***********************

It separates you from the rest of the human race forever, that cancer diagnosis. You're forever orbiting the knowledge that maybe, somewhere in the machine that is your body, there's a faulty piece of circuit just waiting to melt down and destroy you.

It can happen at any time. Recently I met a woman who'd been diagnosed with secondaries an unbelievable 21 years after she was given the all-clear (or to use a more accurate medical term, 'no evidence of disease'). Another woman returned from her celebratory cruise to mark 10 years' NED, only to find that the monster was almost certainly back.

Planet Earth is blue and there's nothing I can do...

***********************

So you won't find me coming out with any smug assurances that I've beaten cancer or (as is the popular vernacular in BC circles) I've kicked its arse. Oh no. Fighting the Freeloader is a job for life. It's just that these days, it mostly manifests as a psychological battle to stop turning your head to look at the thing that's always on the periphery of your vision.

Get thee behind me, Planet Earth.

************************

Coincidentally, Ground Control to Major Tom is a long-standing code between my Bear and me which started with my considered choice of home number ringtone years ago. Of course, I usually take the role of Tom, flying off to town to shop or to attend yet another follow-up appointment; the Bear would rather insert bamboo slivers under his fingernails than go to town. When the Bowie song starts issuing from my bag, I pick up the call with Major Tom. He responds with Ground Control.

We laugh a lot.

Though less so lately.

But finally we have some progress on the home front, though I feel a little like I've been run over by the space shuttle as a result. I knew that tearing my Bear away from home to attend some post-cancer couples' counselling with our social worker (who did, eventually, call back) was always going to be a challenge. If I've been quiet, it's been from emotional exhaustion. It is damn hard work getting around a man's mental blocks. They're so good at building walls out of them. (Especially if anyone suggests they need help.)

Pass the wrecking ball.

Anyway, we were lucky. We found someone who 'gets' him, who doesn't try to make him sit in a chair in an office to talk about his deepest feelings. So far we've sat on a brick wall under a tree for one session, and sat on the ricketty little seating riser at the oval for another. Wind in our hair, sun on our arms. Birds singing.

And it's working. Slowly. Like pulling teeth without anaesthetic is working to get rid of an aching mouthful of disaster so you don't die of blood poisoning.

Except we pull them, and he goes home and puts the teeth back in again because that's what he's used to, and I spend some time pulling them out again. Ouch. Repeat ad lib for two weeks till the next appointment.

I'm tired. But it's working.

**********************

The need for this sort of agonising, exhausting emotional work as a side effect of your diagnosis and treatment is just another thing they don't warn you about. But the more I talk to the other women in my new support group, the more I see that it's a common thread. We've all been screwed over mentally.

The ones who've already done a fair bit of work on themselves are coping better than the ones who are still stuck in abusive relationships, or who have serious self-esteem issues left over from childhood, or who have given their all to others all their life and never really stopped to find themselves. Me? I've done a lot of work on myself. A lot. I've had extended therapy with three different practitioners through my life, and I've spent hours reflecting on myself and my choices. If I'm coping well with the curve ball called cancer, that's why.

But still it hasn't been enough to allow me to cope with this on my own. It took weeks (my therapist is ridiculously busy because she's bloody good), but finally I managed to get an appointment to get my own head straightened out too.

Naturally, the first thing she wanted to know was what I needed from her. And I said, "I need some support. I join all these support groups, and because I'm good at it I end up doing a lot of the supporting myself, and I realised the other day that- well, wait a minute, that wasn't why I joined."

(And it's not because people don't try to support me, I might say. But I'm acutely aware of the effect my own angst has on those around me. I self-censor. All. The. Time.)

"What does support look like to you?" she asked.

"Being able to just cry," I said, and did so.

That's where therapy is so good. I don't have to give a rat's arse about how my tears make the therapist feel. It's her job to receive them. And so I can just cry. Not explain. Not censor. Not rationalise and argue myself out of feeling what I'm feeling.

Just cry.

Everyone should have a therapist after something like this.

************************

Of course, I didn't just cry for the whole hour. A sentence that's come out of my mouth a few times lately is I don't know who I am any more. Cancer seems to have changed not only my body, but my life path. Getting back to where I was seems impossible.

What is my computer addiction all about? (Certainly it's not good for my relationship. See couples' counselling.)

Am I no longer a person who works with children? (What a damned waste that is. See the workplace that never calls.)

Have I become a person whose sole mission is to help other people with cancer? (See computer addiction. Is this the only way I'll ever feel useful again?)

And a few startling things emerged, as they are wont to do when I have therapy.

I am too big for my previous job. I need to expand my job description to use my talents in a satisfying way.

It's not that I'm not working because of cancer. I AM working- I'm helping people for hours every day with their cancer experience or with their questions about their children. It's just that I've tried to leave money out of the equation, and that's why I'm not feeling valued.

I am investing energy in staying small.

Yikes.

Needless to say, that therapy session will not be my last. I need to address this problem of feeling like I'm on the work scrapheap, despite having so much left to give and giving it wherever I can.

See, without serious, big work to occupy my brain, it's awfully hard for my eye not to be drawn back to that blue spinning planet called cancer. The one that's always there, that I can do nothing about. So that's the current mission: redefine what I do to make it fit who I am and meet my needs. It's going to be a challenge.

Ground Control to Major Tom. Prepare for liftoff.

The slow internal burnout

I haven't written anything for a while.

I did start writing a post during January, but it became an extended rant about little things- little things that certainly weren't going to change thanks to my ranting. Frustration doesn't make for good blogging. You need a little more substance than twenty paragraphs devoted to saying 'some people are idiots', even if you do manage to do so in twenty different ways.

But now I do need to write something, because- surprise- I've hit the wall, and you, my friends, need to understand why.

********************

I blame my father. Or rather, I blame his genes. In a tongue-in-cheek sort of a way.

See, some of my father's most prominent personal characteristics were courage, determination, persistence and anger. And lucky me- I inherited the full hand of cards.

The courage, determination and persistence stood me in as good stead through this battle with the Freeloader as they did my father in World War II. He emerged something of a hero at the end of it, and- in some people's eyes- it seems so have I. People like my father and me do well under fire. We steel ourselves, we fight back with everything we've got, and we do our best to save those around us as well as ourselves.

But he was ever after an angry, wounded man, prone to irrational behaviour and sudden explosions of temper. As the dust settles around me, with everyone telling me how fantastic I look and assuming everything's just hunky dory now, I find myself following down the same path. PTSD, anyone?

After all these months of holding things together, I can see the seams starting to rip. Distracting myself by helping other people isn't a long-term solution to the sort of stress that the Freeloader has put me under. In the end, it just makes me angry that hardly anyone seems to notice that maybe I might need a hand too. Not even when I tell them so.

Is my act that good?

************************

Let's share it around; I blame my grandmother, too. Or rather, I blame the Polynesian blood. I'm guessing that her cultural heritage gave me my ability to understand what's happening between the lines of what people write and say. It's an instinct that I can't explain, but I can often nail what other people are feeling and put it into words for them, even if I don't know them very well.

That has its traps. Mostly people are grateful for my gift of understanding, but sometimes people reveal more than they meant to. Sometimes people don't want to be exposed like that.

And here's the rub: at some stage, a person who instinctively understands other people's feelings also wants to be understood like that in return. Sometimes I feel desperate for somebody, anybody, to at least try to read between the lines of what I write and say. Because we all self-censor when we go public.

I need someone who can see to the heart of things, like I so often can.

************************

I would never blame my mother, of course. Not even with my tongue firmly wedged in my cheek. She gave me the gift of writing what I mean. She gave me the sense of humour to see the funny side of almost everything that's happened to me over the last 16 months.

Sometimes that laughter, and that ability to record my feelings accurately, have been the only things keeping my head above water.

But being the class clown on one hand and writing harsh truths that others identify with on the other- no, that's not the whole solution either. I'm still performing. At some stage the curtain has to go down, and I'm left with myself and a bin full of reject truths that weren't fit for public consumption.

Nobody gets thanked for bringing the whole room down, right?

**********************

So here I am, stumbling through the trenches of cancer, wearing my blog like a flak jacket to repel the bullets of fear, holding out my hand and my wise words and my poems and my songs to others to drag them out of the mud if I can. Overhead, skyrockets are going off because my war is, apparently, over. Isn't it?

A lot of the time, this is what it looks like ahead to me:

More trenches. 

Has anyone got my back?

**********************

Enough analogies. Here is the real scenery.

Put simply, I actually feel right now like I don't have any real-life support.

Yes, I've got a good partner, and for that I'm grateful. BUT. My man needs as much help as I do. He's been a trouper all through the full frontal engagements with the enemy, but now we both need debriefing. We're not a lot of use to each other in that respect, because we're both afraid the other will break if we open up too much. I've got to the point in this campaign where I'm maybe up for genetic testing; it might mean quite a lot more surgery. He doesn't even want to talk about it. The family history I've gathered isn't looking good. Another trench to fall into and climb out of.

I know I need help, and so does my man. I've rung the social worker repeatedly, trying to get an appointment to see her with the Bear so we can work through our issues. Every time, I've got her answering machine; every time, I've left a message; zero times has my call been returned.

And yes, she was expecting my call.

That doesn't feel much like support.

Meanwhile, one girlfriend whose visit I was looking forward to isn't coming, or not for several more months. After her spending most of the time I've been sick overseas, I admit I was counting on her coming and fielding a few more four-letter-words than I usually release into the wild in real life. But she can't help it; I'm not blaming her. Another girlfriend, my usual reliable backstop, has recently admitted that due to a few challenges that are out of my control she won't be visiting any time in the near future either.

And the neighbours and the acquaintances- well, they just want reassurance that I'm well and staying that way. They're mostly not the sorts of people I'd be spilling my guts to anyway.

As for the new local Breast Cancer Support Group, the one they want me to lead in the future- well, same old same old, right? Who gets the support? Who gets to do the supporting? The dynamics so far suggest that I'll be doing a lot more giving than receiving.

Online support? I guess I'm my own worst enemy in some ways, always more ready to help than to admit I need help. And like I said- it's hard to find anyone who can read between the lines like I do.

Hell, I don't even know what I need help with most of the time. I think I probably just need to cry and yell for about two weeks, and it's hard to do that online. I'd just make people distressed. It's the best I can do to put out the occasional rant in the Pink Sisters. And some things- well, some things you just don't want to put in writing anyway. You just need to thump someone's shoulder while you scream.

So much for the backup troops, the covering fire. That's just the way it is; nothing I can do about it but shrug my shoulders and keep putting one foot in front of the other. And glancing over my shoulder, keeping an eye out for snipers.

**********************

Against that background of 'you're on your own, sweetheart', I'm finding a whole new and exciting range of triggers to set off my temper. Mostly, I feel enraged completely out of proportion to the supposed offence, and I know it. I can't blame the Arimidex for all of it, though certainly it makes me irrationally touchy from time to time. But some of my anger goes deeper than being starved of a hormone. There's a deep injustice about this disease that has no answer. My nature craves balance and fairness, but life isn't like that, is it? Life doesn't give a crap about fairness.

The latest nudge to set me off was the media hype about a dead movie star found with a needle in his arm and a shitload of heroin in his body. The tenth Facebook friend waxing lyrical about what a tragedy it was inspired me to express my anger on my page about fools who choose to dice with death, aka using addictive recreational drugs for a thrill, and then get a big glorious pat on the back when they cark it. Meanwhile I fight for my life, for the rest of my life, with no option to sit out the game.

Nothing fair about that.

Yes, I admitted, maybe I'm being unreasonably hard on people for making one mistake. But considering where I've been this last year, cut me a break, I asked my friends.

Or words to that effect. I haven't been back to Facebook to check exactly what I said, because right at the moment I don't want to be there, because some of the responses I got made me too angry and hurt.

But I guess it sorts people out, doesn't it?

Some 'friends' didn't seem to bother reading that last bit about cutting me a break, or didn't think it mattered. In they came with barrels blazing, arguing with me and each other. The one time I actually admit to a bit of anger about what's happened to me, and people rush to call me names. WTF is that about? Judgmental, unsympathetic, lacking in compassion; you name it, it got either said or implied.

Yeah, that's me. To a T. Who are you and how the fuck did you get on my friends' list. And why didn't you ever learn to read.

I wasn't that rude in response, of course. Mostly I just thought it. Felt it.

Oh, quite a number of people agreed with me about drug use. But agreeing wasn't really the point. I don't think they heard what I said- what my heart said- any better than those who disagreed. Not the important thing, the thing that was actually there in black and white at the end, but which somehow got lost amongst the knee-jerks. Because if they'd heard that, they might have said to some of the other people, 'didn't you hear what she said? Shut up. Why are you turning this into something about you?'

Two friends did read and comprehend, in that whole string of 80 comments. Two people didn't immediately try to

argue about how wrong I was about addiction or risk or whatever their personal hobby horse was or

modify my opinion as too extreme or

embroider the argument to encompass their own personal context so they could refute it or  

agree with me that recreational drug use was a bad choice. 

Two people actually read to the end of what I wrote and understood it as me saying THIS IS JUST A BRIDGE TOO FAR, I'VE HAD ENOUGH, LET ME BE FUCKING ANGRY FOR A MOMENT AT THE INJUSTICE OF THIS WHOLE BLOODY YEAR OF HELL.

One person said

break given.

One person said

I hear you.

Thank you to those two people who were actually listening.

*********************

And so, where to from here? Not back to Facebook, I think, other than to post this. Fuck the daily song, fuck the record of daily workouts, fuck the poems that I've been posting every day to try to put something other than celebrity bullshit and personal whining into my friends' feeds. I need a break from supporting other people and brightening their days. I'm exhausted from pouring my energy into a bottomless pit of other people's needs. Someone needs to put a trampoline at the bottom before I throw my whole self in, hokey pokey style.

To those who really want to support me, who participated in that thread and have just realised they missed something: it's okay. I forgive you for missing it. My act probably is that good. I probably have had you fooled. Now, wake up and listen: I'm on the fucking edge. 

Perhaps I'll head to the telephone when I'm done here, to give the social worker one last call. Perhaps then to another counsellor from my past, if I can't get any response. The rational brain is still ticking, despite the slow internal burnout.

I've already been out on the bike, eating up 11km as though I was standing still because I'm so much fitter than I used to be.

It didn't stop me feeling angry, though.

A walk in the bush. Some time at my sewing machine. A bit of bird-watching from my balcony.

There are plenty of things to feel happy about, if only I could get past the anger. But right now, I'm not going to play my usual game and tell you about them so you can relax and think I'm okay and not worry about me. There are plenty of good things in my life, but maybe my real-life support system isn't one of them.

Time to toughen up and keep marching, till I find a debriefing station.