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.

Soul food

The pity party is officially over.

See, you can either stay where you are and feel sorry for yourself, or you can pick up your foot- either foot- and make the first step to somewhere else.

For an indecisive Libran like me, the biggest problem was deciding which foot to move first. Story of my life. My eggs have always been in too many baskets. My hat rack has always been full to overflowing. (And my oversupply of metaphors always in danger of falling into the mixmaster.)

Some say I'm over-imbued with talents, and others might view it as being a Jack-of-all-trades (with the usual rider). And so often, I've found myself in a state of paralysis, not knowing which path to follow to find some sort of fulfilment.

I could be writing. There are two blogs, two unfinished books and a growing series of children's stories to work on.

I could be applying for jobs, trying to get back into the childcare workforce and using my talents to help children.

And on, and on. I can make things, too. I can knit and sew and paint a little. I can sing and play and write music. All these ways of finding new wonder and joy in the world are at my disposal- and yet when the crazy of treatment abated at last, I fell into a black hole. I'd got myself healthy, I'd got myself into a fitness routine and was eating well, I was getting back to the normal level of daily tasks and I'd set myself some goals around the farm- and yet hopelessness was seeping in and settling around me. Every day was feeling the same.

Of course, there's something to be achieved from routine. But it isn't all there is.

Sure, I was spending half the day on Facebook doing good, trying to help other women with cancer come to terms with what I've been through, but that didn't seem to be enough to feed my need for meaning in my life. It was giving me some sense of purpose, sure- I wasn't just being a passenger in the ride to the end of time- but it still wasn't healing the scars on my soul.

What was I doing just for me?

Not a lot.

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

It's not enough, you see, to just be there for everyone else. After a while of doing that, you start to feel hollow inside. The Bear calls it running on empty. He's been doing it himself for a while now. He really needs to go sailing; I wish somebody would find him a boat. That's his soul food, see. He's sitting here wishing Christmas Day was over right now, so impatient is he for the start of the Sydney-Hobart. He's read the programme till it's falling apart. Vicarious pleasure, given that his days of actually competing are long gone.

I can't fix it for him; he needs to do start the ball rolling for himself. I'm no sailor. I don't know the right people.

But many of his friends do. I wish to god they'd think to ask him how he is once in a while, instead of asking him how I am. I wish they'd see that cancer is a disease of the whole family unit, not just one person. I wish they'd open some doors and make it possible for him to heal himself.

That'll be the day.

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

I had an excuse for every single thing I didn't do to help myself, of course. I didn't have the concentration to write, or I was too tired, or I wasn't in the mood. I was too old to get work; who'd want me? And my hands don't work the same as they used to. They're a little arthritic. They hurt when I try to knit; heaven knows how I'd go on the guitar, as there's no strength in my left hand. My eyes are screwed so I can only sew in daylight. Painting? Meh, so much organisation.

And so on.

The magic moment when it came was random, as magic so often is. A chance post on my Facebook wall by a friend I've never met, another rider on the Cancer Train. A song I'd forgotten I knew.

I didn't even play the video. I didn't need to. I realised the song was all there still, inside my head. I used to play it years ago when I was in college, when I was making a little money to supplement my teachers' scholarship by providing music for the patrons to ignore while they ate dinner in a local restaurant.

I didn't mind that they ignored me. Someone was giving me money to play songs I liked on the piano. That seemed like a miracle too, back then; most of my experiences of paid work had been pretty dire.

But I digress.

That song went round and round in my head all morning. Eventually it got too much for me. I dared raise the lid of my poor piano, sadly neglected for the whole year of my treatment. I knew it hadn't been tuned, despite the appallingly changeable weather and three floods. I opened it up anyway.

I dared put my fingers on the keys, despite knowing the tips were still a little numb from the peripheral neuropathy. Some of the Freeloader's gifts are permanent, it seems.

And I didn't have to try very hard to remember.

It didn't sound too bad.

Just for the hell of it, I videoed it. Something told me it was an important breakthrough. And then I uploaded it to Pink Sisters, so my friend could see what she'd done. So many of our actions have ripples we never know about; I wanted her to see that something good had come of her tiny, random decision to put that song on her wall. It might make her feel better, if her today was being as rough as usual.

It was the start of something.

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

The thing about my music: I need an audience. If a song plays in the forest and nobody hears it, did anyone care? I'd long lost touch with the personal pleasure of just making music for me. I'm too hard a task master. I couldn't play or sing well enough to satisfy myself. All those years of judging other people's performances had taken their toll; I wasn't good enough to please me. I've rarely played or sung since I stopped teaching music for a living.

But oddly, other people seem to be kinder to me than I am to myself. They enjoyed my little video. They wanted some more. A little music to cut through the heaviness of dealing with their disease and their treatments and their PTSD, every single day.

They didn't have to ask twice. The next day I posted another little piano tune that I'd taken from the back drawer of my memory.

And then someone asked me if I ever sang while I played. What? Ever? When I was a teenager I sang dozens of songs every day while I played. When I was working in schools I sang and played every single day. WTF happened to that?

I needed a few rehearsals this time.

I just needed a bit of encouragement, I guess.

I've made a Facebook page now, where I put up a performance a day. It's not about the quality. I'm never going to have an agent knocking on my door or ten thousand 'likers' of the page. I've managed to shut down my internal critic, the one that would make me do forty five takes and still not have one good enough to post. I'm not listening to the voice that says all your old students will look at this and know you're really crap. That voice has missed the point.

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

The point is that cancer scars your soul. You're wounded inside, where nobody else can see.

If you just sit there, waiting to feel better, hopelessness comes over you like a cloud and settles all around you. The Scary Man whispers his fearful poison in your ear, day and night. You've been through so much with so much resilience, you've beaten off this bastard for months of your life, and now- when everyone else thinks it's over- you realise it's never over. When everyone thinks you've won, you give up and become a victim, because you're just so tired and gutted.

No you fucking don't.

You find something that heals your soul, and you do it. You get out of the bloody chair and please yourself, because really, all this pleasing everyone else has whiskers on it if you end up empty inside. Why the hell bother? You can't give when you've got nothing left.

You find your inner tiger, and you feed it. Because the tiger is what will keep your life worth living, that life that you've fought so hard to save. Nobody else can feed your soul. The tiger is yours alone. It responds only to what you do, grows fat and healthy again only on what you need.

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

Here it is Christmas Day, and I'm sitting in a chair writing. I'm not being with the people who might expect me to be with them today, and I'm not cooking up a storm; in fact we've eaten pleasantly, but quite frugally. I'm not pleasing anyone but myself. The tiger says no. Right now I need silence, and a feast of soul food.

I haven't sung yet today, but it'll happen. Having a page set up like that is a commitment to feeding the tiger. Even when I felt flat and uninspired a few days ago, I knew I had to honour the tiger and try to sing.

I felt so much better afterwards.

I called the piano tuner, too. The tiger keeps wincing when my left hand hits the octave that's soooo out of tune. See what I'm doing there? I'm shooting down my own excuses.

And another thing: I really can't play the guitar still. I tried. So when I wanted to sing a Joni Mitchell song and my hand wouldn't cooperate, I opened up the music composition program that Jools got for me years ago instead. I'd barely touched it since she gave it to me; it had opened up a can of worms I couldn't bear to look at, full of old hurts and lost beauty. I taught myself how to use it pretty fast- seen one sequencing program, seen 'em all- and wrote out the guitar part in a couple of hours.

By later that day, I'd started writing some words down for a new song.

The tiger is still purring about that. I didn't write music any more because there was nobody to perform it. I'd forgotten about me.

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

So- no more forgetting about me. Healing means fixing the intangible as well as the physical. Nobody else can do it for me. I have to make my own tiger-food. All the materials are here. There are no excuses, really.

And now, if you'll excuse me, my piano is calling me.