Wednesday, July 30, 2014

Three steps back

It's while I'm running the filleting knife down the rib cage of the freshly slaughtered turkey that the analogy hits me between the eyes. I am, for all intents and purposes, performing a posthumous mastectomy on this poor creature.

It's hard to get every last scrap of flesh off those ribs. The only thing at stake, in this case, is household economy and my own idiotic perfectionism; the older I get, the more I become aware of my underlying OCD. Dr Goodguy, on the other hand, would have been leaving me vulnerable to recurrences if he left a single strand of breast tissue in place.

Just as well he's the surgeon and I'm the amateur butcher.

The knife slips, slicing into my left middle finger. Fuck. I'm covered with little nicks, thanks to the Lyrica making me sleepy and uncoordinated. I reach for yet another Band-aid, pushing away the knowledge that I'm meant to avoid breaking the skin on any part of that arm.

This is reality. I can't sit here swaddled in cotton wool for the rest of my life. We still have to eat.


The human breast that Dr Goodguy filleted away two weeks ago is definitely better gone. My ovaries were as pure as the driven snow, and for that I'm immensely grateful; changes there are symptomless and frequently deadly. But the pathology on my right breast did show some small aberrations- not anything that could be classed as pre-cancerous, nothing to cause undue concern, but any changes at all make me damn nervous after the year and a half of crazy I've endured. I think of the white spots on my last mammogram, which didn't set off the alarm bells in anyone but me, and know that we've cut off the Freeloader at the pass this time. He won't be slipping any messages into Paul Revere's saddlebags, bound for my lymph nodes, before we even know he's arrived.

And there's that, isn't there? My last mammogram. I have no regrets about a future in which my sexual parts will not be slammed between two icy plates and flattened till I wince. For long, long minutes.

Honestly, men complain about a finger up their arse to check their prostate? Been there, mate. No comparison. Come, let me take my hair straightener out of the freezer and apply it to your nuts, and we'll talk.

But I digress.


There are things I'd forgotten about post-mastectomy recovery. The scales tip this way and that; to balance the load of crippling fear I carried through the last mastectomy, I have my brand new and total lack of tolerance for being ill or incapacitated. In hospital I ran on equal parts of adrenaline and denial, refusing pain killers completely by the second morning so that they sent me home on day three with nothing but a drain bag and a cheerful wave. It felt like a win.

Bloody-mindedness continued to be my friend for some time. I spent the first day at home sort of in bed relaxing, then normal service was resumed as I started to cook and do a few chores around the house. Realising I wasn't sleeping all that well- I blamed the annoying drain in my side, which made lying down singularly uncomfortable- I dug out an old packet of Targin and started dropping one each night.

It didn't help much, but still the penny didn't clang on the bottom of the piggy bank and bring me to my senses.

Day seven, and the drain came out with a cheerful 'see you in six months' from Dr Goodguy. I am Superwoman! Nine days out from the operation I was walking four kilometres to our creek and back on my own, bush-bashing and climbing trees on the way.

And still not sleeping.

Well, that was only to be expected, right? I haven't been able to sleep on my left side since the axillary clearance- the ache in my arm becomes unbearable within minutes if I lie on it. And obviously my right side was going to be sore after being filleted. I'm really not a back-sleeper- I've always curled up on one side or another, or even slept face-down (not an option at present). So of course I wasn't sleeping well.

Ten days out I started to crash, as the sleep deprivation hit me. It finally struck me that the pain over my new scar was getting worse, not better. I checked for redness, but no- it all looked perfectly normal. But anything touching the wound was agony, and that included clothing. (Sadly, running around nude in the middle of the Bungy winter is not a viable option unless I want snap-frozen spare ribs. Very, very spare ribs.)

But wait. Anything touching... where have I heard this before?

I'd forgotten about the nerve pain that accompanied Round One, making it impossible to even rest my poor gutted wing on the arm of a chair. I'd forgotten about it to the extent that I didn't recognise the sensation that was driving me crazy as nerve pain, simply because it was in a different place- under the arm and across my chest, rather than running down from shoulder to elbow.

And so, back to the Lyrica, which makes sleep possible at night and turns me into a zombie by day. If I only take the evening tablet, I can sleep at night and sort-of function during the day.

Sort of. If I don't count cutting my fingers to ribbons while processing a turkey.


Along with the zombie mode which lasts well into the morning, along with the deep reluctance to get out of bed, comes the Black Dog sniffing around my heels. You're failing, he snuffles. You're backsliding. You're lazy. Knowing it's bollocks doesn't help me when I'm this flat. I can't even shout at him.

I know exercise would help, but I just can't find the ergs. Riding my bike seems too risky; breaking the scar open would set my reconstruction plans back to zero. Walking seems too slow to make a difference to my mood. My motivation feels like it's gone in the incinerator with my fine sections.

I get on the scales to see how much ground I've lost, but of course I'm well over a kilo lighter thanks to the missing breast; small comfort when your two steps forward are surgically achieved. Should I be trying to lose the rest of this weight? Should I say fuck it and just turn back into a pile of lard on the couch? Should I try to find the middle road and somehow maintain this weight till the reconstruction surgery?

And that, of course, is a whole new can of worms to deal with; another surgery, at this moment, seems as desirable as an anchovy and Vegemite sauce on my ice cream sundae, but I know it has to be arranged. My reconstruction requires a whole day in theatre, and if I don't book that theatre well in advance I'm screwed. Within a week of the mastectomy I'm on the phone and lining up the reconstruction for November 21st.

"What's the hurry?" grumps the Bear. "You've just been through one surgery. Why the rush to put yourself through it again?"

Because I hate the way I look. Because I'll have to pay another excess on my health insurance if I wait till next year. Because I want this to be over. I have many genuine, heartfelt and logical responses, but none of them fix the real problem at the heart of this conversation: my Bear is at breaking point. He's had enough. Three rounds with the Freeloader in his life, killing and maiming his women, and he wants it to stop. No more hospital, no more anaesthetics, no more surgery and recovery and watching people he loves in pain. He's started to believe he's cursed. He's started to believe he's caused it somehow, and seeing me go through this shit all over again is undoing him.

"You're not your boobs," he says to me. "You were blessed with wonderful breasts and I enjoyed them, but they're not you. It's you I love." And he's saying all the things a dream man would say in these circumstance, and I can't fault a word of it, and it's never going to change my mind. Because that's how I am. My body, my decision.

I'm even dreaming of having breasts again. I wake devastated to find it was just my subconscious playing tricks. I drag myself to the bathroom, look at the wasteland of my chest in horror. The slashes, the knobbly ribs- I look like a goddamned turkey carcass. I may as well feed myself to the dogs and be done with it.

Dressing to go out, I put on an ah-bra and the old teddybear tits long before I should be putting any pressure over the wound- just to feel normal, just so people don't stare, just so I don't hate my own reflection. At the end of the day they've ridden up to my chin, and it's hilarious and ridiculous, and under the laughter I feel like a freak.

And so we're sinking together, my Bear and me- him from sheer emotional exhaustion, me under the weight of our combined physical and mental pain and my desperate attempts to keep our relationship from imploding. One step forward, three steps back.

Throw me a lifejacket, someone.

Friday, July 18, 2014

Make 'Em Laugh

WARNING: This post contains some full-on photos of my surgical work. If you don't want to see, don't look!


Back in the days when I was teaching classroom music full time to sometimes unwilling adolescents, my long-suffering colleagues and I used to give ourselves the odd 'time out' by educating (!) our Year 9 students about old musicals. (And yes, I confess that often meant turning on the video player- remember those?- and sitting on our exhausted arses for the last forty minutes of the day while the next segment played to a restless and clearly indifferent audience.)

Snorts of derision were the stock reaction to most of the old-fashioned and over-sentimental songs which drove the creaking plots of many of these old shows, but one sequence invariably cut straight through the carapace of teenage cool and had whole classes of 14-year-old girls writhing with hysterical delight.

I give you 'Make 'Em Laugh', from 'Singing in the Rain.' Go on, watch it. Be a devil!

Make 'Em Laugh!

I suspect that the inherent philosophy of this song- that everyone will love you as long as you make them giggle helplessly- has underpinned far too much of my interaction with the rest of the human race. Never mind that Donald O'Connor had to be hospitalised after filming the song. It's only pain, right?

And so it was that I turned up to Admissions last Monday for my prophylactic surgery wearing bunny ears.


The world is divided into two types of people: those who thought this was hilarious, and those who immediately looked away and tightened their lips into a semi-audible 'tsk tsk'. I found it an incredibly useful way to shortcut the business at hand. The tsk tskers wanted to get straight down to the business of getting me sectioned (and you can interpret that any way you want), and the others were happy to notice that I'm a human being, not a diagnosis, before they got right down to treating me.

So I smiled, regardless of the cool reception, and filled out forms; or I returned the smiles and talked about the Jolly Old Jolie Gene as I filled out forms. Laughter does sort people out awfully quickly.

What did you notice first?
The ears or the commode chair?
Here is my tip of the day for people going to hospital: be memorable, but for the right reasons. From the time I walked into that building, the majority of the staff who came into my vicinity had smiles on their faces. My bunny ears declared my intent not to be a fucking miserable sod, and hardworking underpaid people tend to like that.

It's a choice, right? Pretty much every attitude we adopt is a choice. If I'm the one on the receiving end of the shit sandwich, I reckon it's empowering to choose to make 'em laugh.


Of course, making 'em laugh also served to divert attention from my very real and intensely personal feelings about losing my remaining breast. I'd got totally tired of being asked if I was alright by well-meaning people, and it was easier to project the humour as a smoke screen than to be either angry (which would hurt them for no good reason) or honest (which would leave them as confused as I was, and no doubt convinced they'd said the wrong thing). Was I alright? How the fuck would I know? Define alright. What was there to feel about this surgery, other than complete bewilderment?

I knew only one thing. I wanted to live, rather more than I wanted to maintain one real breast (or indeed two); that's the only part that's ever been clear. In the days leading up to last Monday, whenever I touched my doomed nipple it felt numb- as though all feeling had already resigned itself to landing the hospital incinerator. Whatever grieving has to happen about that sexual loss will hit me when it hits me, but it hasn't happened yet.

What I do regret- and knew I would- what I do feel angry and sad and not alright about is the way I look now. There's simply no pretending that I look like anything but a huge pink pear. With my narrow shoulders, small back and generous Polynesian hips, I was balanced visually only by my excess of breast. I've gone from hourglass to bean bag, and I hate it.

Turn the mirrors to the wall? It's only temporary, right? Yes, sure, Dr Yes will fix it. First World problem, vanity, beauty-is-not-skin-deep, wee-waa wee-waa blah blah blah, STFU. For now, it's my reality, and I'll be damned if I'll do anything but face it and feel what has to be felt. Alone. But don't ask me to define it.

The ovaries, on the other hand, I regret not one whit; I was done with breeding long ago, and all I think of when I think of them at all is how fucking lethal they can be in someone like me.

Or, indeed, in someone like my mother. QED. Sayonara, and slam the door on your way out.


This hospital visit proved to be my turn to upset the surgical apple cart, in the most minor of ways. First on the afternoon list, I slid straight into theatre without my backside touching the waiting room chair and proceeded to screw up everyone's schedule. My ovaries, clearly picking up on the rabbit-hole theme, wanted to play hide and seek. It took some hours longer than planned for Dr Goodguy and friends to blow up my abdomen with gas (truly, they do!) and go hunting around the back of my uterus via three tiny incisions in my belly. We're late, we're late, for a very important date.

All things considered, the team did well; I'm lucky they didn't testily abandon the laparoscope and slash a bigger hole to make it easier. Face it, Dr Goodguy's just not like that. All the staff commented on his amazing neatness as they surveyed my tidy white rectangles of Fixamol (the only tape I've proved not to be allergic to), and I had just cause to thank him for his patience yet again. I ended up with the promised three small nicks, which will make Dr Yes' job that much easier.

That done, Dr G set upon my chest with the intent to make the scar on the right resemble the one on the left as closely as possible. Looking pretty good so far to my untutored eye.

But honestly, do you see what I mean about the pear? Once you take the breasts away, your body unexpectedly goes in under your arms and then out again at the bottom of your ribs. And out, in my case significantly, to your hips.

There's a pun in there somewhere about pairs and pears, but right now it doesn't feel funny.


I woke up without remembering a single thing after the anaesthetist told me he'd 'just give me something to relax me'. Whatever he gave me obviously sent me straight to coma, do not pass go, because I didn't get to see Dr Goodguy at all before he started sectioning the bunny. And perhaps because of the extra-long time on the operating table, I don't remember much about the waking up either, other than that it was unusually uncomfortable- a need to cough, which hurt like hell, and a certain discombobulation of the mind. My mouth felt like the whole of the Simpson Desert had been deposited in there, complete with camels and minus the waterholes.

I guess five hours' paralysis with tubes shoved down your throat will do that to you.

Back in the high dependency ward, I was treated like royalty. The male nurse waxed lyrical about the talents of Dr Goodguy; he cut my throat a few years ago and I lived to tell the tale, he joked, showing me an almost invisible thyroid scar. I drank gallons of water, desperately trying to remove the sandy expanses from my throat. The proffered sandwich was too hard to swallow, though my stomach loudly protested the need. A full bladder pressed alarmingly and immediately on the recently-reamed areas; I noticed with some satisfaction that I was able to use my yoga training to get myself onto a bedpan unassisted, though once there I needed to use my muscles in an unaccustomed way to help release the pressure.

A helpful nurse passed me my phone. A selfie was enough to reassure my friends that I was all done and fine.

Go me. I can do this.

Of course I can.


Doing the hospital's instant coffee for the next few days, however, was another matter. I'd been spoiled in the high dependency ward, the staff quietly conniving to bring the bunny percolated coffee from the nurses' station, and once back with the throng I was forced to post a less reassuring picture on my Facebook.

Make 'em laugh.


Happily, though, and in stark contrast to the Base Hospital which I could see across the valley through my window, the food was edible and relatively nourishing. Seriously, how hard can it be? The vegies were still slightly firm and noticeably the right colour; the meat was still moist.  Nothing appeared to have come out of a packet except some of the regrettable gravies and sauces (first ingredient salt, second ingredient sugar if my slowly recovering taste buds were telling me the truth).

Nevertheless, after three nights I was stir crazy and ready to come home. The third day had been spent feeling pretty miserable, probably a kick in the teeth from the anaesthesia as well as a little exhaustion with looking in the unforgiving bathroom mirrors every time I had to relieve my extremely impatient bladder before it exploded through my stomach wounds (well, that's how it felt). The bunny ears went back on. The call for horse and carriage was made. I waited impatiently for the Bear's time to coincide with reality- always an imperfect art.

Lemme outta here!
And so here I sit at home, mostly just lying in bed reading or playing around on Facebook, a drain still sticking out of my side to remind me not to get too ambitious too soon. I admit to feeling a little vivisected when I look at it, though of course the results of the experiment are long in. People with BRCA mutations live longer if they have these surgeries. A LOT longer.

Physically, I guess I'm doing really well. I've only had one pain tablet since yesterday morning, and that was mostly to help me sleep in a bed also occupied by a man who's all elbows and a dog who's missed me too much. I've taken two walks with the dogs today without doubling up or falling down.

But emotionally? How do I feel?

I have no idea.


Tuesday, July 8, 2014

Love, loss and learning

The world is divided into two types of people: those who think everything that happens has some sort of moral lesson to it, and those who believe that shit happens. Randomly. Deal with it.

Of course, that's bollocks; the truth lies somewhere between, and a third group of us have worked that out. Reading that first paragraph back, I fear I've been influenced by my midnight reading as I lay awake last night trying not to think about having my other breast lopped off next Monday. 'Chicken Soup for the Soul' might better have been named 'Krispy Kremes for the Simplistic'. I found it deeply disappointing. It's a book I've been meaning to read for years, ever since some well-meaning teacher got up at assembly and read us tender females an extract that resonated with my embryonic understanding of the world.

An understanding which was also terminally infected with bollocks, I might say. Happy ending or tragedy, I've discovered to my cost, are not the only choices in life, though my youthful literary choices would have me believe so. A lot of life is tedious or plain exhausting. We all end up dying in the end, even if the roller coaster ride was fun up till then. Worse, the ones we love die, and instead of having a weep and closing the book with a sort of morbid enjoyment, we're sentenced to keep on living that same story- to find a way to manage without them.

But of course, as a career educator I'm the first type of person. I'm more inclined than the next person to look for the lesson in everything that happens to me. And so I'm sitting here with my trepidation and my sadness, trying to see if I can learn anything useful from the loss of my beloved Blinky.


It was the dog barking over and over that drew my attention to him the first time. Looking out through the forest near our house, I couldn't see a single thing to be alarmed about. Then a bouquet of gum leaves dropped almost on my head, and I looked up and started yelling for the Bear.

"Come and look! There's a koala in our yard!"

Now, perhaps you might think that this is a fairly normal happening for people who live in the Australian forest. Not so. The koala population in our area has been decimated by logging, disease and various forms of human stupidity, and is in severe danger of extinction. Nobody we know can remember seeing a koala anywhere remotely near our place before- not even the local bushmen who used to live here in humpies rather than houses, cutting ti tree by hand or dropping trees for a tiny sawmill that was swallowed by the forest long ago.

It was a magic moment.

Over the next two months we watched Blinky with increasing reverence and awe, as he selected a new tree each night in a game of hide-and-seek that he was always going to win. Finding a solitary koala in the two acres of forest nearest the house was a more diverting game than Candy Crush, and I found myself spending more and more time outside, walking through the trees with my neck aching from craning upwards. He was rarely low enough for us to photograph, given that the trees around us make Cleopatra's Needle look bent and stunted.

Are you hearing me.

It made me educate myself in a way I'd never bother to do before, despite my love of nature. I found myself consulting Google again- thankfully not about breast cancer and BRCA2 and salpingo-oopherectomy and DIEP reconstruction, but about eucalypts and feed trees and scratch marks and droppings. I needed some 'cheats' to play the highly distracting find Blinky game more effectively.

I was no match for him, of course. He gave plenty of clues- fresh droppings, distinctive hand marks on the smooth-barked gums- but it was as though he'd turn up in plain sight and then magically vanish. Once he went AWOL for ten days and we thought he'd moved on, only to open our eyes one morning and be confronted by a furry ball tucked high in the flooded gum outside our bedroom window, in clear view.

Here I am. Gotcha.


And then one evening, as I walked out in the late twilight to catch a last glimpse of him, I found him sitting on the ground at the base of a grey gum. Hastily tying the dogs up, I raced back with a flashlight. Something was definitely wrong. He shouldn't be on the ground at this time of the evening.

And he most definitely shouldn't let me get close enough to brush the flies off the back of his neck. He sat awkwardly, his bright eyes regarding me with a resigned stare.

I called the koala rescue service.


24 hours later my little friend was dead, released from the misery of the final stages of the koala's form of AIDS, KoRV (koala rotavirus). He'd probably fallen from the tree out of sheer weakness, fracturing his forearm in the process.

It was, to me, completely unbelievable. For over two months I'd told myself stories about this little chap. He felt safe here. He had everything he needed. Our trees were so attractive because they were in fertile soil, thanks to our turkeys free ranging around them. In spring he'd start to call, and attract a female. Soon we'd have a whole colony of koalas outside our window.

All bollocks. My head had been firmly wedged in the sand. Wild koalas don't appear near houses unless they're desperate. All the time, he was sick and hungry; perhaps when I didn't see him, he'd not been hiding- he'd simply been too weak to climb and had lived on the ground, scrounging a few fallen leaves where he could.

He wasn't the start of something. More likely, he was the end- a sign of the dire state of our koala population, ravaged by KoRV, chlamydia and a decimated, fragmented environment.

What was there to learn that I didn't already know? The human race is selfish, greedy, deluded. There is no hope for us. We will cut down the trees and flatten hapless wildlife with speeding cars till there's no magic left.


I could, so easily, throw Blinky out with the bathwater, just like that. I could so easily discard everything good about the experience, simply because the ending was bad, sad, too hard to deal with.

I could let him confirm my worst, most depressing thoughts about humanity.

There's always a choice, my therapist used to say. And so, actively, from Blinky I learn yet again to choose differently, even though it's hard work.

I can choose to learn that life is a series of cameos, each one carrying its little basket of emotions. I can choose to hold onto the best vignettes, even when they're in the past, instead of letting them be eclipsed and made meaningless by sadness. Looking at my few photos of Blinky, remembering the joy he gave me while he was here, I can still smile as well as ache. Touching my poor doomed breast for the last time, I can still recall the fun we've had together, even as I mourn the coming loss of that particular sensation- surely? Can't I? Can I?

I can try.

I can choose to learn not to tell myself such alluring stories. I can acknowledge that when I really don't know, it's best to store up a little realism with the determination and optimism. Blinky's presence was a farewell, not a greeting. These operations may go wrong. I may get an infection, my wounds may break down, the reconstruction may fail.

Learning is always possible. Shit happens. The truth is somewhere in between.

And while I'm stuck with my story, the story where my breasts will be gone forever- and with them one dimension of my sexuality- there are other dimensions of my story coming that I can't imagine from where I am now. The more I close myself off, protect myself, allow myself to be miserable and fatalistic, the less open I am to turning new pages.

Vi's grandson- remember Vi?- Vi's grandson has helped me turn a page to get past the sadness of my Blinky story. He's turned up here on a bicycle, ridden all the way from the Central Coast, and he's started to clear our track through the forest down to the creek. Remember those huge storms while I was having chemo? The tree that nearly killed the Bear when it fell? Those storms wrought havoc down the back. We couldn't even walk down there, let alone get a vehicle in.

Losing access to most of our property has been a huge thorn in our sides. But with everything else that's been going on, dealing with the carnage down there just hasn't come to the top of the list. Now as I walk down the first part of the track again, for the first time in two years, I see that the enforced lack of human presence has been a boon for the wildlife.

And I find myself looking upwards again, craning my neck to see the distant treetops. Checking the ground. Checking the bark of the smoothest trees, looking for those tell-tale scratch marks.

It's good exercise, walking. It's something I can do almost immediately after my surgery. I was wondering how I'd cope with suddenly having to drop my exercise routine back to the bare minimum; walking down the road simply doesn't have the pull of cycling. What would happen to my motivation?

But walking down the bush track- that's different. If I stop, wait, listen, there's always magic to be found.

And listen. There are scratch marks on those trees. Fresh ones, since the last time the trees lost their bark.

They may be from a goanna, I say to myself. Google said it's hard to tell the difference sometimes.

There are droppings, too. Fresh ones.

I'm no expert, I say to myself. They may be from some other animal.

But I keep looking upwards anyway.