Freedom's just another word for nothing left to lose

I've got it.

For months now, I've been wondering how to refer to my current health status. My oncologist doesn't do follow-up scans, you see, so I can't join the 'NED' club (no evidence of disease) or declare that I'm officially 'in remission'. I would be talking, as the Bear would say, through my arse. For all I know, the Freeloader could still be here, playing merry hell very quietly in my bones or internal organs.

(Not that I think for one moment that this is so.)

But I've got no proof, and Dr Mumbles has very good reasons for his strategy. Too many scans, and I end up abusing my health even further; a-hem, radiation can cause cancer, and I wouldn't want that, would I? My body has already been through the therapeutic equivalent of Hiroshima. Enough already.

And in his Mellow mode, Mumbles also acknowledges that the constant testing and waiting for results is just too damn hard on the patient's coping strategies. Don't I know it. Remember back at the beginning of this lunacy, when I had a bone scan and ended up locking myself in a public toilet to shake in private while I waited for the results? And once you get those damned results, the countdown starts to the next test.

No thanks. Pass.

See, if the Freeloader's back, it's not like they can fix me. Did you read my poem? After Stage 4, the doctors say there's nothing. So Mumbles reckons I may as well enjoy blissful ignorance for as long as I can.

I'm good with that.

But it doesn't help me to explain my situation to others. Am I cured? Buggered if I know. I don't feel sick now, but then I didn't feel sick to start with, when I was potentially dying.

So I've been struggling with the words. And finally, I've found something that fits.

I am on parole.

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

To all appearances, I'm a free woman. To look at me, when I'm all dressed up, a stranger would never know I'd been sick.

But it doesn't alter the fact that I've been in metaphorical jail. Cancer will always be with me. I've got a record. Like a stretch in the clink, my diagnosis will follow me everywhere and affect much of what I want to do.

Most tellingly, it'll affect my relationship with any new
employer; in my line of work, I'll have

The photo's as old as the hills, but let's just
say that preschoolers can WALK... and
babies can be heavy!

to disclose that I've had a mastectomy. My arm is still too weak to work with babies.

So I'm limited in my options. I need to stick to four- and five-year-olds. Today is the one year anniversary of my diagnosis, and I celebrated by going to town, dropping in on the preschool where I was working before D-day and declaring myself ready to work again. I feel confident that I've got my energy back enough to manage the odd casual day, and I'm pretty sure I can pick up the occasional preschooler if I have to.

But lifting and carrying babies all day? With my left arm? That's a recipe for lymphoedema for me- and possible disaster for a baby- if ever I heard one.

No way. Doing time with the Freeloader precludes me from that occupation.

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

And then, of course, it only takes one little offence and I'll be back inside. Parole revoked, go directly to jail. Nobody can predict how I'll go with my new-found freedom. I could be back behind bars tomorrow, or next year- or, if my body can behave itself, never.

It's lifetime parole for me.

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

But for now, I've survived my first year with the Freeloader. Surely that's worth a little bit of a party, beyond just trying to go back to work.

Remember Amanda? I do.

So I dropped into Shartan and visited Amanda to ask her if there was anything she could do with my atrocious hair. I cringe at the way it looks; it's not growing out anything like the way I thought it would, and in the words of an ancient hair product ad, I can't do a thing with it.  It's already way too hot for the Megwig, but despite sweating like a curly-coated hamster in a sauna, I still avoid venturing out without a hat or a scarf disguising my chemo coiffure.

I tried 'product'.

I tried colouring it, but the
effect was similar to that
achieved by applying
lipstick to a pig.

So I actually made an appointment with a hairdresser, for the first time in about 28 years. Amanda says she can trim the sides so I look like I meant it, rather than being the victim of a tragic cranial accident.

Well that's not quite what she said, but that's what she meant.

Yes, yes, it's good to have hair again, I shouldn't complain, blah blah blah, but honestly, I look like had a fight with a pair of hedge shears and then stuck my finger in the powerpoint. Worse, I look like my mother's deeply unpleasant cousin, who occasionally took her face out of the gin bottle for long enough to get a short, tight and unflattering perm and tell me I should have a breast reduction. 

"You really MUST get a breast reduction..."

I do NOT need to be reminded of THAT. Bring on Saturday.

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

So here I am, a year out from Dr Adnan's good news and bad news, still walking Planet Earth and not, it seems, dying any time soon. To all intents and purposes, I'm a free woman- as long as you don't go back too far in my file.

And the Kris Kristofferson song? Well, I guess all I've got to lose is my life, so I may as well feel free to go for everything else I want- if I've got the energy. Going back to work. Getting a new haircut. Maybe trying to get this blog published at last.

But most of the time, just like Kris and his Bobby McGee, feeling good is good enough for me.

Stage Fright

Dedicated to all my Pink Sisters who've already moved beyond the wings of stage 3 where I stand. There are many of them. I can't help thinking about them, and imagining what it would be like to stand in their place. 

Stage Fright

The doctors swear there's nothing

                beyond Stage 4.

Walk beyond the wings

                 on that far side

and you fall, endlessly, into emptiness.

You can't come back. The set door slams behind you.

Committed to your role, you stammer or declaim

blinded by nerves, desperate for direction.

Just play your part and go,

                the doctors say.

A painful pressure upon your back,

                the finger pointing

                                to the script

                exeunt

stage left

and

and

nothing.

But as the dark velvet brushes your face

                 muffles

your last soft gasp of fear

                 and you tumble away flailing

the tattered script

                 torn from your numb hand

there it is

                 the spotlight

                                      seeking you

the play begins

                 upon Stage 5

the bright circle beckons

                 and surrounds you

                 breathless

you step

                 across the edges

                                   of yourself

across the tape

                 the line defining

                                   who you are

and there you are

light-limbed and limber

                 your friends

                                   tossing rosebuds upon the footlights

there you are

                 at last

embracing the stars

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

Uh! uh! uh! uh! Stayin' alive... stayin' alive...

All of us who've had cancer share one obsession. It doesn't actually matter whether our prognosis is hopeful or dire.

Uh! uh! uh! uh!...

Yep, in between the days where we're consumed by fear because we don't feel quite as well as we think we should, we have days where we're consumed by the technicalities of staying alive post-cancer.

What should we eat?

What should we drink?

How much should we exercise, and in what way?

How will we ever balance quality of life against quantity? Is it even possible?

Is it going to kill us, no matter what we do? Is trying to change our behaviour a massive waste of our limited time?

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

Dr Google is our enemy, Facebook memes our tormentors. It's not just the interminable medical survival statistics, which we need a triple honours degree with backflip and pike to interpret. Naturally there's a metric shitload of charlatans out there too, just begging to jump onto our insecurities, throwing contradictory books and ideas at us as they try to convert us to their looney conspiracy theories or persuade us that an answer actually exists to our questions.

Conflicts arise in our heads, stuffing up the infinitesimally tiny space available for rational thought after we deal with remembering our tablets and appointments. Remember, we're still fighting off the grey haze of chemo brain. We need to reserve most of our synapses just so we can kind of function as a member of society again.

In our hearts, we know that the Freeloader isn't sitting there glued to a Facebook feed full of healthy living memes, or Googling how to cure himself, just so he knows who to leave alone. He just bloody turns up and moves in, and either moves out or returns for seconds pretty well randomly.

But we're human, and humans have this stupid belief that they can control things. It's all too easy to turn into an OCD lunatic with juicer-induced RSI, who dedicates 16 hours a day to dieting or exercising or meditating and the remaining eight to lying awake worrying about whether it's working. Alternately, we can recognise that we're not driving this bloody bus and end up feeling so out of control that we just give up, reaching blindly for the doughnuts and crisps while we watch Big Brother to reassure ourselves that someone out there has a life more pathetic than our own.

We can't get past that crap without support. And the best support is each other. We cancer chicks need to stick together, even after the monster is supposedly gone.

Sometimes our families and our friends don't understand that. They think we're wallowing- that we need to leave our 'cancer friends' behind and just move on.

We're not wallowing. We're just... uh, uh, uh, uh...

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

I figure that it doesn't actually matter how switched on you are, intellectually or emotionally. There's simply no way to avoid the Fear Factor all the time- not even if you've majored in denial all your life. The best you can do is find some middle course, some way of living that alleviates the worst of your anxiety without turning you into a maniac who thinks they can cure cancer by baying at the moon on the third day after the equinox and has no other topics of conversation.

For me, finding that other way of living has manifested as a hell of a lot of academic reading, a shitload of reflection on what I've tried before, listening to people I trust and making some pretty radical changes to my priorities.

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

Priorities. Number 1: Staying alive.

Nothing, and I do mean nothing, gets in the way of my morning exercise. Thanks to my scrutiny of the relevant medical articles, I've discovered that my particular stage and type of cancer is not particularly fond of people who exercise for three to five hours per week. In fact I can reduce my chances of dying at the Freeloader's hands by more than 25% just by getting off my usually lazy arse every day for at least half to three quarters of an hour.

For a person who actually loathes exercise for exercise's sake like the plague, that's quite a challenge. The secret, for me, is finding a whole range of physical things that I actually enjoy doing and then asking myself each morning not whether I'll exercise today, but which of the many options I feel up to and in the mood for.*

My current choices:

Riding the pushbike
Walking the dogs
Wii dance fitness
Wii tennis, boxing, bowling, baseball and/or golf
Wii cycling, hula hooping and/or step class (plus umpteen other options on the disc)

There's always something there that seems both appealing and possible, no matter what my energy levels are like. Soon I'll be able to add swimming in the dam and scooping salvinia out of the lagoons to that list, as the weather gets hotter and more disgustingly humid and the concept of getting out of bed becomes even less appealing than usual.

And of course, the bonus is that I get a whole lot of endorphins for my trouble right at the start of the day. The more crappy I feel in my head, the more important the exercise is and the more important it is not to ask myself whether.

Just which.

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

As for the eating... well, I started with the medical evidence there, too. All roads lead to carrying too much avoirdupois as a primary culprit in cancer diagnoses. I mean, many of us believe with at least one part of our brain that some recent significant life stress led to our cancer. The truth is that there's no medical connection, but stress tends to lead to lying around watching boxed set DVDs and eating Cadbury's by the block, right? Which means turning into the human equivalent of a beached whale, all blubber and lack of momentum.

The same applies to all those goddamned Facebook memes about red meat or dairy products or sugar being poison, and various fruits and vegies having magical carcinogenic properties. There's no statistical correlation. But red meat and dairy are generally well-loaded with fat, and sugar is, well, sugar. So eat too much of them, and what happens?

It's not rocket science. (And you don't have to be overweight on the outside to have your internal organs nicely swaddled with blubber.)

As for the gazillion forms of the 'salad cures cancer' meme, if you eat only herbs and vegetables, what happens? No Nobel Prize for working that one out, either. Give that top model a hamburger, for christ's sake, before you snap her in two thinking she's a pretzel.

So the bottom line here for me was lose weight or die. I've had my head wedged firmly up my arse for most of my life about the risks to my health of being more than generously curvy. The scales, which I generally avoid like the plague, had said various unwelcome things to me when I could no longer avoid them at my local GP's premises, but that didn't make me change my habits.

I've spent half my life dieting. It doesn't work. It just makes my body adjust to functioning using less food, so when I fall off the wagon the weight piles back on twice as fast.

I've sometimes been motivated by the desire to look good, but even that has never provided a permanent solution. Op shopping for clothes before my diagnosis, I'd discovered to my horror that even the size 14's no longer went anywhere near me. My answer was to buy bigger clothes- up to size 18- that disguised the problem pretty well, and to go on eating whatever I wanted.

Well, the Freeloader saw straight through that one, didn't he? I had to find a better way.

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

I've got no doubt that my biggest enemy when it comes to eating more healthily has been lethargy. When I'm motivated, I can make almost any food look appetising- I owned a restaurant, FFS! When I'm motivated, I'm a damn good cook. But it's always been much easier to just reach for whatever was at hand that tasted good, especially when I was the only one eating.

I was just lucky, I think, that Ferdinand's sudden dislike of sugar after chemo set me on the road to change. Nothing like a bit of free aversion therapy. Even now, when I've discovered that I can cheat a little and eat some sweet things, I'm reluctant to overdo it in case I get that chemo-taste back in my mouth. That helps. It gave me a head start. (Read, "I stopped reaching for the chocolate and sweet biscuits as a solution to every problem".)

The other head start was provided by the exercise. It makes me less lethargic, gives me an appetite and puts me in a better mood at the start of the day. Read my lips: I am not a morning person. Read them again: I don't do breakfast. Both those elements have changed beyond recognition.

This is what my breakfast looked like this morning, after I'd spent a good 35 minutes on a dance workout. (Hey, I'm getting better at this salsa routine. I look less like an octopus with Parkinson's and more like a superannuated groupie.)

Those are unsalted roasted cashews on top. I LOVE cashews. I also love limes. So, you see, I'm still eating what I like, when I like. Who cares that it doesn't look like breakfast? Cereal is mostly crap anyway. It's full of sugar.

And this looks so much prettier. I love red and green, especially on my plate. Rule One of food presentation: contrast. Why the hell do you think Italian restaurants sprinkle all their tomatoey dishes with parsley?

Under the cashews and limes is a little medley of stuff picked from our vegie garden after I watered it this morning; English spinach, silverbeet, parsley, basil, coriander, rocket, cos and mignonette lettuce. (The only thing that didn't come from the garden is the red capsicum, because ours aren't ripe yet.) Dr Rosie's best advice to me on how to move on from here was 'eat food that doesn't know it's been picked yet, and everything else in moderation', so this came straight from the garden to my plate and got dressed with the lime juice. It was surprisingly delicious and filling.

Oh, and I worked out I wasn't drinking enough water, because I was waking up thirsty in the night. So I've added lime slices to my water to make it more appealing, and I top it up every time I finish it so there's always a glass of infused water waiting for my attention on the bench.**

Sometimes I have fruit and little cubes of cheese with my cashews for breakfast, instead of the salad stuff. It depends on what I feel like. So here we are again: not whether I feel like a healthier breakfast (that's 'healthier than nothing till I'm ravenous at 11am and eat crap'), but which healthier breakfast I'll have.

I haven't turned into a different person, mind you. I still snack, and I still like foods which are what we in the Early Childhood profession diplomatically call 'sometimes' foods. But I buy the healthier options from amongst what I like, so I can then choose which, not whether, and not feel deprived.

Right now my fridge boasts Lindt dark chocolate in four different flavours. (You can afford Lindt if you stop buying all the other crap.) On the bench are some wasabi peas, crackers to go with the two varieties of hard cheese in the fridge, peanut butter (low fat /low salt) and grain bread, and the cashews, of course- along with the apples, pears and bananas- for snacking. There's so much nice stuff that I couldn't possibly eat it all in one sitting. That lets me listen to my body saying what it wants and eat what I crave, not hoover up the lot with an overlay of guilt (read, "so I can't rationalise that if I scoff it all now I won't be able to eat any 'bad' stuff tomorrow and ruin that day as well". What a load of horseshit that is.)***

There are little cans of tuna in the shelves, to go with the goodies from the vegie garden. If I feel like a toasted sandwich with tuna and cheese for lunch, that's what I'll make, and if I feel like just fruit or maybe some biscuits and cheese, I'll have that. I have the energy to listen to myself when I'm hungry and make what I want, instead of just grabbing some processed crap that's no trouble.

Today I happened to feel like spiced gouda on wholegrain crackers, strawberries and freshly squeezed orange juice. Dear me, life is so hard.

Oh, and that's a Mikasa plate from my dinner set. Because what the hell am I saving the good china for?

Dinner is still pretty much the same as ever. I cook what I feel like cooking, though I use olive oil or real butter instead of margarine and I sprinkle my vegies with lime or lemon juice to reduce the GI of those spuds.**** The biggest differences are the ratio of meat to veg on the plate and how much I serve myself. Often, I can't eat it all even so. I think my stomach shrank. (I did manage to force down all of this... mmm, home-grown turkey schnitzel...)

And then... a little Lindt for afters. Mmmm, again. Yeah, sometimes we eat half the block between us. Dark chocolate is good for us, right?

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

Of course, it doesn't work every day. I have my off days, and plenty of them, because I'm human. I have days when I'm busy or depressed or stressed or worried, I have days when my 'morning exercise' takes place at 2.30 in the afternoon and I've eaten half a block of chocolate before I get there for no good reason at all.

But there's no point worrying about that, right? You just have to get back on the horse. Or the bike, or the Wii, or whatever.

Is it working? You bet. Remember how I was in the op shop and buying up to size 18? Well, I had to go back to the op shop yesterday, because all my pants are falling off.

Here's what I bought. The pants? Nothing bigger than a size 12.

Yeah, sure, the jeans are a little... snug. What the hell. They're stretchy.

And even if this doesn't beat the Freeloader in the end, I will have felt better about myself in the meantime. That's a win, right?

And now, back to my dancing. Uh, uh, uh, uh....

...................................
Credits:

* Don't ask yourself whether you want to do it, just do it: I learned that one from Jools. The which is my own addition to the rule, because like any toddler I always need to have a choice before I can do something that wasn't my initial preference.

** The infused water idea came from Hellen and Mandy, from my Young Pink Sisters wellness group. Bless you both.

*** The buying-more-shit-than-you-can-possibly-eat-in-a-sitting idea comes from Susie Orbach's 'Fat is a Feminist Issue', one of the few books that promised to change my life and actually did affect the way I looked at things forever.

**** And the idea of adding citrus to food to lower the GI of the whole meal also came from Jools. It sounds loopy but it's verified by science. A low GI diet is one of the few diets that is backed by medical evidence in terms of improving health outcomes.

Message in a bottle

Nothing like telling everyone I'll be blogging less to make me feel like blogging more.

I've always been a little contrary.

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

The port-a-cath came out yesterday, as promised. It's a milestone, sure, matching the milestone of one year tomorrow since I found the Freeloader- but I told you that already. I'm not repeating myself; it's just that a few interesting things happened on the way to the operating table that bear recording here.

Significant things. Thought-provoking things that are worth bottling and throwing out on the ocean of the internet, in the hope that they'll wash up on someone else's shore at a useful moment.

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

The first significant thing that happened to me yesterday was that the nurse weighed me. Whoopee. I love the scales the way only a human with various learned maladaptations around food can do.

I love them when they whisper that I'm lighter. I hate them when they scream that I'm a lump of lard. They can affect my mood for days, or weeks, and they can completely drown out the voice of reason. I've been anorexic, and I've been borderline obese, and the bloody scales have contributed to those problems rather than helping me solve them.

There's a photograph floating around somewhere of my friend Renata dropping our scales off the first floor balcony of our share house. I was waiting down the bottom to record the moment of freedom for posterity. Those fucking scales were driving us nuts. It's an occasion we savour and cherish to this day. Since then I've tried to avoid weighing devices, because I know that they're dangerous. They do bad shit to my head.

And of course, these fucking scales told me loud and clear that I was three and a half kilos heavier than last time I weighed in about a fortnight ago on the Wii. WTF? Here I am, watching what I eat and exercising like my life depends on it-

....oh wait...

So I was, of course, monumentally pissed off.

And then something odd happened. I got sent off to change into my Versace fashion garment, AKA the humiliatingly equalising surgical robe that makes everyone look like the same carelessly-packed bag of Pontiacs.

(The spuds, not the motor vehicles. I wouldn't mind so much looking like a bag of luxury cars.)

The dressing room was thoughtfully equipped with a delightful full-length mirror, just so the side of beef on the way to the carvery could get the full effect of their transformation to lumpy carbohydrate status. Perhaps depression makes one easier to anaesthetise.

But wait. First I had to undress, and there was no way to avoid catching a glimpse in the mirror.

I did a double-take.

Because you know, that woman in the mirror didn't look half bad. All that exercise had made a difference. The waist was, yes, a waist. The legs and upper arms were toned, rather than flapping in the breeze like last week's washing. Even with the missing boob, I actually liked what I was seeing.

Shock.

People. Significant moment. Follow my lead and toss those bloody scales off the nearest cliff. Muscle must weigh more than fat, and numbers can lie. Stop visiting the bathroom every morning for your daily fix of bullshit, and start finding some sort of movement that you enjoy and can sustain instead.

According to my BMI, I am still significantly overweight. Screw that. I'm on the right road, and I'm liking what I see, and I refuse to be overruled by numbers, formulae and faceless statistics.

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

The next interesting thing that happened was that the nurse asked me if I'd like my jewellery taped. I elected to take it all off.

It was hot today... can you tell... makes those hot flushes even more fun...

At this point, my jewellery seemed to decide it had a mind of its own. I took off two necklaces, completely forgetting the Buddha on a chain that Christine had lent to me at the very beginning of my fight with the Freeloader. The only time it's left my neck has been during surgery and radiotherapy treatments. I'm not a Buddhist, but that necklace is a symbol of the unfailing support of my friends and neighbours. 

I took off my loopy, eye-catching earrings, completely forgetting

I do like these little studs... but I came close to giving them away.

the little studs above them which are the last remnant of my previous relationship. I wear them to remind myself how resilient I am, that I survived that terrible ending, that it will always be part of me- not to be denied, but rather learned from.

And then, having been gently reminded to remove the pieces that are so much a part of me I no longer think of them as decoration, I got to the rings.

Gentle reader, when I first changed my rings from my left to my right hand for fear of developing lymphoedema and having to have them cut off, I was at least five kilos heavier than I am now. They came off easily then, and they went on my right ring finger just as easily.

Like I said- hot today, so the finger is a bit swollen. It wasn't yesterday. But you can sort of see that the gold ring is larger.

Now, listen. I always wore them on the same finger so the amber and silver dress ring, which I bought for that finger to remind me not to get married again (long story which culminates in Renata and I making a pact to appear at the other's nuptials with a shotgun and intent to kill show just cause if we were ever so silly again), would keep the much larger gold wedding band in place- it was far too big for me, no matter what hand I wore it on.

Yesterday, my friends, the amber ring came off quite easily again- but that gold wedding band would not come off. Yep, the one that the amber ring was keeping in place.

It's not mine, that wedding band. It was my mother's, and it's the only piece of her jewellery I have; the rest was stolen when my house was robbed just after she died (yes, you can cry right there- I did).

Her hands were much larger than mine. I have my fine-boned grandmother's tiny hands. But yesterday, despite the facts that I was five kilos lighter than when I put it on and had suffered five dehydrating hours of nil-by-mouth, that ring- the one that was about three sizes too big for me to start with- was not coming off.

"My mother appears determined to come into theatre with me," I told the nurse, somewhat wryly. "You'd better tape it up."

So she did, and I was left thinking about the power of symbols, and messages in bottles.

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

How do we explain the inexplicable?

I am not religious- not at all. I don't believe in the merciful god that gives comfort to many cancer patients (if there is one, he's got a damn lot of explaining to do about the way my good, kind and funny mother died after a year of living hell). I don't believe in guardian angels. I don't believe in ghosts.

I acknowledge there are sometimes presences. I've felt the presence of people who are no longer here in the flesh, whether that's through a twist in time or a peculiarity of memory or some sort of physics we don't understand yet.

But I can't explain how a gold wedding ring can shrink.

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

So I just accept that somehow my mother managed to make sure I knew she was with me yesterday. In the same way, I was reminded of my strong support base of friends and my own strength in adversity. I was nervous about having surgery again- I'll admit it now. But all those symbols somehow found a way to remind me that I wasn't alone.

You can't do cancer on your own. Don't even try. That's the message in that particular bottle.

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

Tomorrow night, by complete chance, I'll be dining with Christine. Christine was the first person I told about finding the Freeloader, and here I am joining her for a meal a year to the day afterwards. I shall take Buddha with me. I think it's time to return him to his rightful owner. I feel like his work here is done.

There's a bottle I have to take with me tomorrow night, too. It's an '88 Henschke Hill of Grace which I've been sitting on since I bought it, the year after my mother died. It ties things together rather well. I don't drink wine much any more- it stopped agreeing with me when got pregnant all those years ago. Except for Henschke reds. Henschke reds have always agreed with me. I helped drink this bottle's twin at my son's wedding.

It seems right to open that special last bottle now. People keep encouraging me to celebrate- well, I'm the type who lets things unfold rather than planning them. With all my thoughts about symbols and messages in bottles as I took the dogs out walking this morning- the only realistic exercise I could attempt the day after surgery- that particular bottle came to mind.

So tomorrow I shall open it, to mark the end of this crazy year of dancing with death. Whether it's really the end of my fight with the Freeloader- well, who knows. That message is not contained in this particular bottle, or in any other.

But there's no question that it's been a crazy, crazy year.

Trying to remember my life

I've been quiet lately.

I know some people are wondering about me. Wondering if I'm okay, or if I've taken a turn for the worse. Wondering why I've dropped out of sight. Wondering if they should ask. Worrying, maybe.

Sorry.

Strange things are going on for me at the moment. On Sunday it will be exactly a year since I went to wash my left underarm in the shower and found a bruise.

And under that bruise, a lump.

Impending anniversaries tend to bring out odd feelings and behaviours in me, and so it is with this. One small part of me is desperate to believe that the year just past was a glitch, sent by the cruelty gods to make me grow. A plot twist in the story, not the beginning of the end.

That part of me is wiping out every backsliding thought that passes through my head. It blots out the possibility of the cancer coming back, which is a mercy beyond belief. With the help of that stubborn, focussed part of my personality, I can almost convince myself that it's over now- that I've moved past it.

If I don't look in the mirror,

Is that me?

But I thought this was me...

if I manage to ignore how unrecognisable some parts of my day have become...

Cycling? ME?

Stretching on the Pilates roller. That's not a breast.
That's my ribs, with the scarred skin stretched so tight
it feels like it might pop if I lift my arms any higher.

But I do, and it doesn't,

but it's not how I'd choose to spend my morning in the sun.

...if I exert that huge effort of will and overlook

the ridiculous hair,
the terrible skin,
the compulsory exercise,
the morning tablets,
the random stabbing pains across my scar,
the selective taste buds,
the painful stretches,
the creeping fatigue,
the follow-up appointments,
the mail from the BCNA,
the hot flushes,
the joint aches,
the moodiness,
the constant pain in my upper arm,
the strategically-placed pillow under my bad arm at night,
the little blue pop-up Pink Sister statuses on Facebook,
the complete absence of a career...
oh, and don't forget the evening tablets, they're the ones that'll keep me alive...

... yep, I can just about forget I had cancer.

Almost unintentionally, I've declared myself a survivor. I didn't plan it. I didn't really think about it. I just felt it.

Game over, Freeloader. You lose. *

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

My brain argues the point daily; you can never know, it whispers, and it's right.

Damn you, Logic.

But logical or not, that determined part of me stares down the fear.

Fuck you. I'm better.

Better? Pull the other one, it's got bells on. The damage never leaves you, parries Brain.

I'm 56 years old, I riposte. I'd expect to feel tired after doing stuff all morning. I'd expect to have all sorts of little physical things starting to go wrong. So fuck off, and when you get there, fuck off some more. **

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

Actually, thanks to all that exercise I'm probably far less tired than your average nearly-57-year-old, given how much I'm actually doing. Spring in the Bungy. It's too good to miss. And it's why this determined and stubborn woman is out there trying to prove she's better, instead of in here updating the Freeloader every few days.

When you take out all the new and mostly unwelcome stuff, this is what the life I remember Before Cancer looked like.

It's about finding sneaky hens, laying next to a tree-
and that can mean following them through the bush
all morning...

... then stealing some of the eggs to make kick-arse fresh meals-
look at the colour of those egg yolks going into the quiche!
I love to cook... especially if we grew it ourselves.

...letting enough eggs hatch so we'll have meat for the next year;
bringing in the hen and chicks to safety, feeding and
nurturing them, cleaning pens, mending fences...

...kick-starting the vegie garden after last summer's terrible weather-
weeding, digging, turning, weeding again, adding manure, planting...

...welcoming back the spring birds- Mr Kookaburra is a
regular visitor and waits for us to throw him a worm or two
as we weed the vegie beds...

...catching our breath on the back verandah, with the turkeys
clucking around us and the air full of the scent of jasmine
and wistaria blossom...

It's a good life, my life. I want it back without the shadows. I don't want to spend the rest of my days dodging in and out of darkness.

Sure, there will be moments of white panic, when my sight is suddenly half-gone and criss-crossed with zig zag lights, and I wonder if it's secondaries in my brain rather than my regular migraine attack.

Or when the aching in my shoulder is so severe that I wonder if my bones are being eaten away from the inside. Add cancerchondria to my list of things to ignore.

There will be numbing fear again, I know, every time I hear of another friend being diagnosed with metastases. All that goes with the territory.

But it's not going to eat my life. I won't let it.

This is my life.

The children's stories I write. I need to find a
publisher. I need to finish the next one.

The fictionalised biography I'm writing. I'm only halfway
through. I need to finish it. The story needs to be told.

Fighting for what I believe in. Not just fighting a
goddamned Freeloader.

Working with children. It's what I do.
It's who I am.

Being where I want to be, spending time with the people who matter. 

So please don't worry about me. I'm not dying any faster than I was yesterday, or last month. I'm just busy trying to remember my life, trying to turn over those new and distracting pages as quickly as I can each day so I can get back to the main story.

I know that I don't want my blog to become a catalogue of minor whinges. There are always things that a cancer patient in recovery mode could whinge about. I have a place to do that, with the Young Pink Sisters, and that refuge will always be a part of my life, just like the side effects and the fear and the goddamned infernal tablets. But I won't let the last year define me for the years I've got left.

The Freeloader has changed my life, but he hasn't stolen it. He got a year. That's all I'm giving him.

If you spend real live time with me, you'll learn quite quickly that I'm not quite the same. I do tire easily. I do snap without warning over trivial things. I'm less polite than I used to be.

Get used to it.

But essentially, I'm still me, and I'm damn well claiming as much of my old life back as I can. Tomorrow I go back to hospital for the day so Dr Goodguy can take my port-a-cath out. It's an unwelcome reminder, and it's in the way.

I'm not abandoning this blog. I'll still keep you updated when anything important happens, or when I get some flash of insight that seems to need to be shared. No doubt reconstruction will provide some enticing and amusing blogfood, but I'm not allowed to so much as plan that till next year. Something to look forward to?

So watch this space if you will, but don't hold your breath. I'm okay. I'm not over it, because we never get over it, but I'm getting up and walking away from it whenever I can. I know I'm lucky to be able to do that. Not everyone was born as bloody-minded as me. Not everyone has the support I've had. Not everyone had the sheer blind fortune to be born with a resilient body.

I pay my luck forward. If you've got breast cancer, you can count on my ear and my time when you really need it. I've started a Facebook support group for women in recovery mode who need encouragement to exercise and eat well. (Irony right there, given that only the Freeloader has given me the strength to deal with my own bad habits.) I'm not forgetting I was sick; I'm just turning it on its head and using it- to help me, and to help others.

Because really, if I remember correctly, that's what my life was always about.

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

* I stole that line from Pink Sister Julie Ours' post-cancer tattoo. Game over, you lose. Love it.

** And I stole that line from another gutsy Pink Sister, Sarah Hafez, who always manages to make everyone else laugh despite being terribly bloody ill herself.

Dr Goodguy is surprised

I love my surgeon.

Oh, not the fluttery-pulsed, red-faced, squirmy-tummied sort of love. Not the sort of love that lives in a fantasy world of breathless anticipation. That would be silly. I may have identified as Monkey recently thanks to the hairdo, but I haven't resorted to gibbering yet.

No, I just mean that wonderfully safe feeling you get when you actually trust someone. You know they won't tell you any lies. You know they really care about what happens to you. You know they'll do their absolute best to make things go well for you.

That's Dr Goodguy. It's quite a while since I saw him last, but he welcomed me in for today's checkup with genuine warmth. I felt like he remembered me, and was pleased to see me. I felt like he gave a damn.

I'd been looking forward to my surgeon's appointment today, because Dr G makes me feel secure. If that little bit of swelling under my arm was something worrying, he'd find a gentle way to tell me and he'd know what to do about it. If I just had a mild case of cancerchondria, he wouldn't make me feel like a fool. He'd quietly check everything that needed to be checked, and he'd tell me everything I needed to know.

Every patient deserves a surgeon like Dr Goodguy. Especially if they're at emotional melting point. They should clone this fellow, I swear, and hand him out to every woman in the world who's suffered a lump of deadly tumour in her breast and a lump of chilling fear in her heart.

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

I thought I'd been doing pretty well, emotionally speaking, since my tradie tears last week. My friend and fellow-environmentalist Sharyn read that last blog post, totally got it and suggested we hie ourselves to the coast forthwith and let the sea breeze blow the bullshit away.

Well, she didn't put it quite like that, but that's pretty much what she meant.

See, she's just about come out the other side of her own battle with the Freeloader. She's getting closer to that magic five year mark every day. But she understands how the Freeloader can wear you down, and she understands how nature can be a healer. I needed a kick upside the rear to get outside and let the natural world do its work on me, and she gently provided it.

We had a glorious afternoon. Look.

So I've been pretty chirpy since then, all the way to this morning when I turned on the shower to get ready for my trip to town... and the goddamned gas heater wouldn't light. The water spewing from the tap was stone, motherless cold.

I swore a few zillion times. As you do. Tried again, and again, and again.

Realised that I was just emptying the water tank for no good reason, and the clock was ticking.

Wrapped myself in a towel, thanking the Powers that Be that we'd had a few sunny days in a row. Ran outside freezing my tit off (yep, it was a nicely frosty morning) and changed the hot water back to solar heating.

Turned on the tap again.

And what did I get? Stone, motherless cold water for twenty seconds... and then no water at all.

?!

Normally something like that would provoke a flurry of my very best x-rated vocabulary, followed by a call to the plumber. This morning, it just made me cry.

Still not better. I still have a way to go.

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

So I turned up to Dr Goodguy's office feeling a little under-groomed, having hastily dabbed the vital elements with freezing cold water and slapped on a face over the frostbite in the small window left to me before I needed to fly out the door. (Possibly on a broomstick. Did I mention that the Arimidex is giving me the most delightful blind pimples on my face? No? Pass me my cauldron and black cat.)

Brrr. I'd been counting on the shower to warm me up. I grabbed a warm hat from the back of the wardrobe, noted it needed a good brush-down and had a wonky brim, but shoved it on anyway; I just couldn't cope with the Megwig doing a boa constrictor impersonation on my skull today.

I hardly looked as I slapped my eyebrows on. They were probably crooked too. WTF. Who cares.

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

Dr G didn't seem unduly disturbed by my unusually asymmetric appearance; he greeted me cheerily and gently grilled me on how I was feeling, before asking to see the bomb site.

As I lifted my left arm till it all but touched my ear to let him inspect his work, his eyebrows flew skywards.

"Wow, you've got great movement in that arm." His surprise was as palpable as my armpit.

So was mine; my eyebrows joined his on the ceiling.

"I can get it up there, but it's so tight- it really hurts."

He grinned.

"Yes, but you can do it. Some women can't get it further than this."

And did a creditable one-armed chicken impersonation.

"Getting it right up like that- that's really good."

I shut up about my arm then. 

Small mercies, Candy. Keep doing your bloody exercises.

The small hardened lump left him completely unperturbed.

"Scar tissue," he smiled. And went on, "It all looks great."

Checked the other side, as usual; nothing found. (Phew.)

Back to the desk we went.

"So what's on your shopping list today?" he chuckled, as I drew out a sheet of paper containing the usual barrage of questions. Useless for me to try to remember them; chemo brain has replaced anxiety as the thief of my usual orderly thought processes. If I don't write my questions down, I find myself paying upwards of $100 an hour to be a nodding dog smiling blankly at my specialists. And then I get home and wonder what the hell was that about, and what did he say anyway?

No, I've learned to prepare.

1. When can I get my port-a-cath out?

There's one school of thought that says you leave your port in. I mean, if you end up relapsing and needing more chemo, there's a bit of loop theory involved if you've had it whipped out the moment you got to the end of Round One. It's threaded all the way into the heart, you know. Not the most minor procedure, putting it in.

Relapse? ME?

Fuck that for a joke. It's coming out on September 6th.

Now, that port-a-cath has been wonderfully useful. One quick jab, and the chemo drugs were on their way without the nurses turning me into a voodoo doll. I've seen some terrific bruises and outstandingly mangled veins thanks to chemo, and none of them were on my arms.

But the party is over. I haven't the faintest intention of having more chemo, even if I do relapse. (Which feels extremely unlikely most of the time, I have to say.)

No, it's quality of life over quantity for me, and I am NOT going back to that particular banquet table for seconds. I've eaten enough 'nothing paste with metal sauce' (not to mention 'metal paste with nothing sauce') for one lifetime. I've had enough excruciating pain. The hair that's coming back is staying.

Goodbye, port.

2. When can I have a reconstruction, and what's the waiting list like for public hospital versus private, and what are the costs, and will you do the reduction of the other breast, and does that still count as part of my cancer treatment, and who would you refer me to, and...

That, of course, was about twenty questions in the end, but Dr G patiently answered them all.

The bottom line is that he is brick-walling my plea for a referral until next year, regardless of how well my body handled the radiotherapy.

"You really need to give your body a chance to recover," he reasoned. "It's been through such a lot."

Fair enough. My mind probably does, too.

Yes, it'll probably be expensive to get a plastic surgeon to make me a new left breast, and there could be a wait of a year just for an initial appointment if I go public. But Dr G can still do the reduction on the right breast afterwards, and that will be a no-gap procedure.

"I regard that part of the whole cancer treatment," he said. "You need symmetry."

Always thinking of the whole woman.

That made me feel a whole lot better. Not because of the money, but because he did such a good job when he did the first operation on my left breast. It wasn't just neat- it also left me with nipple sensation, despite the fact that the whole thing had been chopped out and relocated.

"No guarantee we'll get that result again," he smiled, and I realise that too. But knowing he's done it once, I like my chances better with him than with a stranger.

See, I've got a bit of a dilemma there. My Bear is a breast man. I told you that before. It would be better in some ways to leave that right breast alone.

BUT- and it's a big 'but'- there's no way the best plastics man in the world could make another F-cup to match it out of my surplus tissue. I'm no Skinny Minnie, but I most definitely don't have over a kilo of fat to spare on my tummy or back.

Or, for that matter, on my big butt.

So it's be lopsided (even if less lopsided) all my life, or mess with the other breast too. I'll be messing, and hoping to hit the jackpot a second time with nipple sensation.

I trust you, Dr Goodguy. I trust you to do your best.

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

And that, really, was about it, till I see him on the table on September 6th.

"It's great to see you looking so well," he said as he ushered me out. Smiling, and looking me in the eye.

And you know, I bet he doesn't say that to all the girls.

Running on empty

When I was a little girl I had a peculiar stoicism which bewildered those whose job involved inflicting pain on me. I never cried, never even flinched at vaccination time; I looked at the needle, even, when I was having blood taken. And I endured countless drillings and the occasional extraction at the dentist without anaesthetic.

It's not that I didn't feel the pain. I did. But I wouldn't show it. I was one tough little cookie, and I was an expert at self-control. Mind over matter, and all that.

And then I grew up, and endured a childbirth that was a living hell. I can describe it in darkly comic terms now; imagine pushing a watermelon covered in razor blades through a piece of inch-and-a-half human polypipe, and you're getting a blurry picture of what I endured. But at the time it wasn't funny.

Something happened to my stoicism that day. It broke, and I've never been able to put it back together.

I don't look at needles any more. I have an injection before dental work. Put me in pain, and I scream for relief. One night of bone pain after that Neulasta injection was enough to send me crazy- remember?

Oh, I still have a strong mind. It just doesn't work on my pain threshold any more. And thanks to the Freeloader, I'm starting to see that pain tolerance isn't the only human limit that can be broken if you push it too far.

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

Really, I'm doing so well. Sure, I only have about two-thirds of a day of energy in me, but my fitness is probably the best it's ever been and my strength is slowly increasing.

I can help around the farm again. I can tidy the house a little without having to rest for the remainder of the day. I can go to town and achieve maybe three tasks of the five or six I really need to do, before I run out of puff and have to come home. And the other day I cycled 11 km without breaking into a sweat.

There was a time when carrying the heavy pots of water out to the veranda for turkey processing left me puffing and flat for hours, but now I take it in my stride. Last week I picked up a 20 kilo bag of concrete without difficulty- completely impossible a few months ago; when we needed a few more veranda posts for our extension, I was able to help carry the lengths of felled tree out of the forest and then lift that damn blocksplitter to thump some of the bark off.

Not all of it, mind you. The Bear did most of the work. But given that the blocksplitter was where this whole story started, I felt that I'd come full circle nevertheless, just through being able to try.

And it's not just what I can do that's improving. My hair is starting to look like maybe I meant it- maybe I just had a really radical haircut. I mean, Mia Farrow got away with the pixie look- why not me?

And my nails- well, the crappy, yellowed, flaking part is almost up to the top. Another month and I might be able to cut the gross-looking part right off at last, and feel like the poison is out of my system.


All of that has fooled me into thinking I'm nearly out of the woods. But here's the rub: while my physical strength is returning and I'm looking more 'normal' on the surface, my emotional strength is starting to crack.

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

For many women, the emotional fractures happen much earlier. They'll have a meltdown when they're diagnosed (completely appropriate, but I couldn't do it). Or they'll soldier through the diagnosis and chemo but suddenly fall apart before radiotherapy, like my Pink Sister Angie. (Me? No way. The occasional dummy spit, but no real breakdown.)

See, I've got form for emotional stoicism as well as the pain thing. I have a talent for low-level PTSD. I'm the one who copes brilliantly in a crisis, looks after everyone else, and then bursts into completely inappropriate tears a week later when everyone else has forgotten all about it.

But it's not working for me any more. My emotional tolerance is broken. The tiniest bit of stress, and I'm a cot case.

I mean, this last week is a perfect example. I'd finally got to the stage where I felt secure enough in my physical strength to actually plan an outing for today- lunch with the Bear at a favourite pub down at Maclean, on the river.

And then a tradesman working on the extension got his dates screwed up, and instead of coming Monday and Tuesday he was coming today. I would normally be mildly annoyed- wouldn't anyone?- but this time I was inappropriately furious. Angry words flew out of my mouth, soon to be replaced by tears of frustration. Even the Bear ended up crying.

I think he probably had a better handle on what was going on than I did. He certainly wasn't crying about a tardy tradie.

Eventually I resigned myself to rescheduling the lunch date. But when this morning dawned and the tradesman had messed his appointments up again and didn't turn up- and it was too late to go back to Plan A, because other much less exciting plans had been made in its place- suddenly a silly situation that I'd normally swear about a few times and then laugh off became something that knocked me down for the count.

Every time I tried to talk about it I started to cry. I realised I was being slightly ridiculous, but that didn't stop me melting down. And even as I was dripping all over the floor, I was thinking I can't go back to work like this. One little problem and I'll crack up. I'm not better yet. 

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

The Bear isn't better yet, either. We're both running on empty. There's not a drop of emotional energy left in our tanks, and in him it expresses physically. First it was the gastric flu; this mega-fit man is never sick, but last week he was laid low.

And now he's lying beside me in an exhausted coma as I write this. He went to bed pretty much as soon as we got home from running a few chores in town, and he couldn't even get up for dinner.

He never refuses my cooking.

I'm scared that he's broken, too.

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

Maybe this is the breakdown we had to have. At least we're acknowledging to each other that we've got nothing in reserve. But where do we go from here?

Don't suggest therapy. I've had so much counselling in my life that I feel like I don't need it any more- I've got to a stage where I can cope with just about any personal crisis by talking myself through it. Surely that's exactly what this blog is about- talking myself through cancer.

But what happens when coping isn't the answer any more? What happens when the emotional tolerance hits zero?

I suspect the Bear will just hibernate his way through it. Sleep or beer are his answers to everything stressful. (Or, more often, beer and sleep.) It's not so simple for an over-thinker like me. If I let it all go when my emotional tolerance is broken, will I ever put the pieces back together? If I start crying, will I ever stop?

That's a stupid question. Of course I'll stop. The problem is being able to start. Cracking up over little things that aren't even the problem, like a tradesman who isn't here when he said he would be, is just a symptom. I need to crack up over the Freeloader who stole a year of my life, or over being chopped up and poisoned and burned alive, or over the constant threat hanging over my head for the rest of my life.

But I can't do it at will. I'm too used to keeping the wheels spinning.

Maybe there's someone out there who can teach me how not to cope.