Wednesday, April 30, 2014

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.


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!


(Insert thirty seconds of silence.)


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.


"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.

Monday, April 7, 2014

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. 



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.