Tuesday, December 24, 2013

Soul food

The pity party is officially over.

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

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

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

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

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

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

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

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

What was I doing just for me?

Not a lot.


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

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

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

That'll be the day.


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

And so on.

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

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

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

But I digress.

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

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

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

It didn't sound too bad.

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

It was the start of something.


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

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

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

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

I needed a few rehearsals this time.

I just needed a bit of encouragement, I guess.

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


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

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

No you fucking don't.

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

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


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

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

I felt so much better afterwards.

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

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

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

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


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

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

Thursday, November 21, 2013

The Getting of Wisdom, the Crushing of Candy

I was having a bit of a pity party this morning over breakfast.

"My life is so boring," I wailed to the Bear. "People ask me how I am, and the next question is always what am I up to. And what is there to say? All I do is get up, exercise, clear the lagoon, make dinner and collapse into bed."

I left out the bits about sitting in this chair writing, talking to my friends on Facebook and making Bitstrip cartoons or playing Candy Crush. No need to spoil a good whine with facts.

Gotta keep laughing or we cry...

"What do you want to do?" he asked, looking far more distraught than I'd intended. Everything knocks him sideways at the moment, and any sign that I'm the faintest bit upset is like a baseball bat to his temple.

Which stunned me into silence, and not just because I'd realised I was being a royal pain in the arse. What did I want to do? I had absolutely no idea. It's so long since I've had any real choices that I've even forgotten what the choices are; I've sorted out a routine that seems to be manageable, and I'm just putting one foot in front of the other to get through each day. Cancer plays such havoc with your life that picking up the pieces as you emerge from the other end is both exhausting and highly confusing.


Mostly, I suppose, people want to go back to whatever they used to enjoy Before Cancer. But cancer has changed us, and we're not quite sure who we are any more or what we want.

It's harder for the young ones. So much of their life BC was about socialising. It's okay for me, out in the back of beyond, perfectly happy with my own company and having my few genuine friends only a few taps of the keyboard away- that is, until too many people seem to require me to prove my 'better-ness' by something monumental like taking up parachuting or climbing Everest. (Don't start me on the 'bucket list' concept. I don't have one. I never will. Man plans, God laughs, and there's a hole in the bucket, dear Liza, dear Liza.)

No, actually, I'm quite content to sit here in this chair between compulsory routines and monumental efforts in the lagoon. Allow me my seemingly boring pastimes, please.

From this angle it looks like I'm halfway there. Bollocks to that- nowhere near it.

But for younger women without my slightly anti-social tendencies, those who want to be accepted back into the fold, to be back where they started- well, sometimes it's tough. I'm old enough to have had some knowledge of human nature forced down my throat by that greatest of teachers, Life. But for them, cancer has thrust that mantle of wisdom upon their shoulders way too early.

They hadn't realised, before this disease marked them out, that what they call 'friends' are probably just an assortment of random strangers, thrust into their lives by a similarity in age or occupation. But now that fact has been forced down their throats in the cruelest way, when they're at their most vulnerable. Faced with the possibility of having to look their own mortality in the eye, many of their so-called 'friends' will cut and run.

See, with their brain these people know everyone dies. Ask any preschooler about the circle of life, and they'll know that people are born, live for a while and then die. But that's not the same as facing the gut-wrenching emotional truth that this also applies to them. A child who actually realises that is usually categorised as having an anxiety disorder.

So for these women who've come together by chance and spent far more time clubbing, getting pissed off their faces and moaning about their problems with their body size or their men than getting to really know each other, contemplating death as anything but a disembodied theory- contemplating it as something that may be actually happening to someone their age-  is completely out of left field. What?

No thanks. The Mean Girl comes to the fore with a vengeance, cutting the afflicted one from her carefully styled and highly superficial social group. She doesn't call, she doesn't visit. Cancer isn't cool, and so you're not included.

Because she doesn't want to think about that other group, People Who Die. This, you see, is the crux of our newly-acquired wisdom, thanks to our diagnosis:

People die. You're included.


Sadly, too many people manage to avoid acquiring that simple wisdom with age. Even some older 'friends' who ought to know better will cross the street to avoid us, rather than catching the faintest whiff of Grim Reaper clinging to our aura. Even, though it seems unspeakably cruel, some of our closest relatives- parents, siblings, in-laws.

What will I say to her? they wonder, when forced to think about us and our inconvenient condition at all. They either have to acknowledge we're ill, or pretend it's not happening- which might be tough, given the obvious changes in our appearance.

No thanks. If they're not emotionally invested in us- and many of our acquaintances and some of our family members, for all their protestations, simply aren't- it's way easier to cross the street.

And even if they are invested- well, it's just too awful to think about, and either they're angry with us for needing attention they don't really want to give (because then they'd have to think about it), or their learned social code hasn't taught them how to talk to someone with a possibly terminal illness.

No. They don't want to think about it at all. There but for the grace of God...

Ah, yes. God. That's the way many of them will avoid thinking about it. Believe in an eternal life after death, and you don't have to confront your own mortality at all.

Or diet! You can believe in diet. See, it's your fault you got cancer, they imply- or even, in the worst cases, baldly state as you stare at them in amazed horror. You ate the wrong things. You should eat like me and you'll live forever.

Oh, the blame game is a great one for people who are in denial to play. It's your fault because you weren't positive enough (but I'm always positive so I'm safe). They never say the second bit out loud, because they're way too unwise to realise their own motivation.

And so, if we've been part of a large and loose social circle, we may find that we're marooned on our own little island of wisdom, with way too many of our supposed 'support group' either treating us like a leper or splattering idiotic platitudes on us so fast that we can't even find a square inch of silence to throw back a fuck off.


Here on Wisdom Island, rather than getting back into our old social groups and painting the town red, most of us are playing Candy Crush when contemplating the true meaning of the words 'friend' and 'family' gets too painful (and we maybe realise we don't have any of one, the other or both). The re-definition process is an unwelcome accompaniment to the constant nagging anxiety which will be our companion from diagnosis to grave.

It's not all bleak, of course. Knowing what makes a friend, or what counts as true family, is a truly valuable life lesson that can make the rest of our life- however long it is- far more enjoyable and meaningful. It's easier to cut out the dross when you understand what 'dross' looks like.

Me? I'm very lucky to be older and a bit battle-scarred, which is why I feel like I have the perspective to write about it. I've had very few encounters with any Mean Girls during my illness, because the last of them got ejected from my life some years ago in the middle of a different crisis. And the emotionally damaging members of my family are all dead, while the rest have been paying attention, reading my blog and not pretending this is anything but shitty. Huzzah for them.

But I still play Candy Crush.

See, this is how it works. The nagging voice of the Scary Man can't always be silenced by shouting. Shouting at him takes energy, and we don't always have energy to spare. Sometimes the only thing that stops us thinking too much is a repetitive, level-up game.

You might think that we could get the same effect by reading a book, or the newspaper. But no; books and newspapers can lead us to thoughts about friends, families, death. They're full of references to this new wisdom that we're just trying to hide from for a few minutes, just so we can breathe without holding a shield up. Shields are heavy.

There's just enough strategy in that game to occupy our mind and keep the other thoughts out. If we're puzzling how to get a striped lolly and a colour bomb not only created, but located next to each other, we can't be thinking how hard it is that our closest relatives are actually not very nice people, or that our supposed best friend wasn't actually a friend at all, or that a twinge in our back might be a metastasis rather than a pulled muscle.

There's only so long you can think about that stuff without committing yourself to life in a nice white coat with tie-back sleeves, or becoming an axe murderer. So please, don't begrudge us our game playing. Don't tell us we should get out more. (In fact, when you see us playing, just shut the fuck up.) Because sometimes, when you've had the ultimate wisdom thrust upon you and you're realising you may be surrounded by dross, it's a case of crush or be crushed.

Thursday, November 7, 2013

Shouting back at the Scary Man

I'd barely posted the last episode of this blog when Jools materialised on the other end of the phone in tiger mode, shaking a striped finger at me.

"Don't you let that fucking Scary Man get away with talking to you like that!" she growled. "Shout back at him, for fuck's sake!"

See, she's done a lot of work on the crap that our subconscious lays on us. She fights her own non-constructive little voices all the time, trying not to let their negativity rule her life. And she's told me before that it's helpful to put those annoying figures from the depths of our subconscious into a chair and nail them down on what they're saying.

And then answer them back.

So, what the hell. Let's do it! Sit down, Scary Man.

Yeah, you. The one telling me I'm going to be dead before the lagoon is cleared, and the pain over my ribs is metastases, and exercising is pointless, and all that other crap that's been whispered in my ear for the last week.


(The Scary Man looks a lot less scary when I put him in a chair. He's actually quite small, when I take him off my shoulder. He can't even look me in the eye.)

Lights... camera... ACTION!

Now, what was that you said to me?

You'll be dead before that lagoon gets cleared. Because that pain over your ribs is the cancer coming back. So why bother exercising? It hasn't made any difference.

Right. Number 1: yes, it's possible that I might be dead before the lagoon gets cleared, for any number of reasons. What exactly is the point of vocalising that possibility, hmmm? What purpose does it serve?

(silence, while Scary Man inspects his own manicure)

What, no purpose at all, other than to scare the shit out of me?

That'll do.

Well shut up, then. If you're not going to be constructive, you can fuck off. Now, number 2. What's this crap about my ribs?

It's metastases.

Listen, you little fucker. In the last week I've been doing any number of things that could explain that pain. Opening the coffee machine with it braced on my ribs, lifting heavy crates of wet salvinia out of the dam, picking up 20kg bags of stockfeed, getting bitten by a paralysis tick. The pain's in the tissue, not in the bone itself. It only hurts when I push on it, and there's no lump. So the likelihood of it being anything cancer-related is minimal. So why would YOU jump to that conclusion? Just because you CAN?

Yep. Once you've had cancer, every little pain is going to be cancer. That's your fate. Just reminding you.

Well fucking DON'T, thanks all the same.

But you had to take it to the doctor to check it, didn't you? And now you need to have that bone scan, but you're a coward. Nyah nyah-nee nyah nyah! Scaredy cat!

Listen, you arsehole. I don't remember you getting your medical degree. And someone who does have a medical degree is Dr Mellow, and I saw him today, for your information. And he took a damn good look and had a damn good feel, and he sees absolutely no reason for a bone scan. So shut up until you can compete with about ten years of study and god knows how many years of experience in the field of oncology, because until then I'm taking his advice, not yours.

You know you can't beat it. You're all talk. Half your family's keeled over from cancer.

Half my family didn't catch it before it metastasised and take the tough road through all the most brutal treatments known to medicine. And half my family didn't get the chance to take personal responsibility for their wellness on top of accepting all the medical help. And maybe I won't beat it, but I'm going to have fun trying.

Fun? (startled look)

Yes. FUN. I've got all these ways of exercising that I actually enjoy. I'm clearing that damned lagoon, and it's hard work and it'll take forever and a day, but I've already seen one new bird there just from clearing that tiny little bit and that was WONDERFUL. And I'm having fun playing the healthy-treat-replacement game, finding something lovely to eat that I would have told myself before was too expensive to buy and having that instead of crap. Like the punnet of figs I ate on the way home from Dr Mellow's, instead of the usual icecream or chocolate bar. And besides, I like being able to fit into size 12 clothes again. So you can take your 'why bother' and stuff it where the sun don't shine. Here, use this pitchfork.

(exit Scary Man, stage left, muttering 'this is no FUN at all' under his breath)


Dr Mellow was, in fact, far more interested in genetic testing and the future of my ovaries than the tenderness over my ribs.

"The radiotherapy continues to affect the rib area for quite a long time," he explained. "And you know, I've had people come in worried about a lump which was actually their ribs protruding- they tend to move a little and stick out more afterwards. It all looks fine to me."

Given my family history, he was reasonably confident that I'd qualify for a genetic test to see if I have a predisposition to gynaecological cancers, so he's writing me a referral. What happens from here could change if I get a positive result for one of the faulty genes they've discovered so far. At the very least the ovaries and tubes could be invited to take a last bow before hitting the bottom of the yellow garbage bin, and it's possible that a prophylactic mastectomy on the other side could be indicated.

I'll deal with that when we get there- the idea doesn't worry me too much. Better safe than sorry. In fact I'm relieved; it's good to have reached the stage where we can talk about it. For months I was fobbed off with 'let's get through the treatment first', which I'm pretty sure is oncologist-speak for 'let's see if you're still alive by then'.

I'm still alive.


And talking of getting through treatment, Dr Mellow says I'm still in active treatment now.

"Very much so. The Arimidex is an extremely active form of treatment for the next five years. It's doing a huge job in preventing recurrence, and it increases your chances of survival a lot."

That came up because I told him the Bear was having some trouble coming to terms with the end of 'active treatment', given his history. Mellow was surprisingly sympathetic to that side of things, and stressed that some counselling was definitely a necessary addition to the coping kit for both of us (a position he shares with Dr Tiger-Jools, who was also waving the virtual finger about that). He even told me how to go about it, and where we could go in town to get a psychologist who bulk-billed.

So I came home and rang Monica, my Breast Care Nurse, who is now chasing up the best psychologist in the district for us. Hallelujah to that, say I, because even though the meltdowns are interspersed with days where the two of us are completely in sync, I know when I need help. And when he does.


And then I breathed deeply and got back in the big lagoon. I could feel the tender area every time I lifted a crate, but you know what? It's actually on both sides. Who knows? I could come out of this with 6-pack abs.

Oh, and our new friend didn't turn up today, but I'm sure he'll be back now he's found us. Here he is, or rather, one just like him.

Sacred kingfisher. Photo by Jeff Melvaine.
Turquoise, to set off azure. He'd make anyone feel better.

Monday, November 4, 2013

Scary Movie

When I was about 6 or 7 years old, I went visiting one evening with my parents. It was one of those events where all the children are shunted into a back room and left in front of a television, in the belief that this will shut them up so the adults can make whoopee in peace. (Not that my parents were great whoopee-makers. It was a one-off event.)

As the night went on, the tone of the TV programmes changed. By eleven at night, we kids were watching 77 Sunset Strip and an older man was attempting to kill a young girl by stealth. Some of the details are lost to me fifty years later, but I remember vividly the toadstools cooked as mushrooms, which the girl refused to eat as realisation bloomed hideously on her face. The scary man was fingering a noose hanging from a rafter when my mother appeared at the door and hurriedly removed me.

I was an impressionable child, and it was my first experience of stomach-churning dread. I had nightmares for months. I wouldn't eat mushrooms for decades. Fifty years later, I think of that night again as my guts contract in the throes of cancerchondria.


In my bag is a referral for a bone scan, which I'm studiously ignoring. I am determined not to fill my body with yet more radiation, just to curb an anxiety which may well be completely unfounded; I will wait a week and see if my symptoms resolve themselves. This is the logical course, but I know that I'm actually acting out of fear rather than rationality.

There are several possible explanations for the tender, swollen area over my ribs. It feels like a bruise, but there's no visible bruising. When I explore around it, pushing the thin layer of flesh up higher and palpating the actual rib area, there's no pain. It's not in the bone. Surely I don't need the bone scan.

But it's my left side, and I'm remembering Professor Power Ranger telling me that a local recurrence was the most likely complication.

In my head, the noose swings to and fro.


When I can calm myself, I can talk myself through this. The weather is already unseasonably hot and humid, and my arm and chest have been feeling fat and swollen for some weeks as the lymph has more and more trouble draining. Even my hand tingles when the temperature reaches a certain point. The swelling is almost certainly lymphoedema of the chest wall, and I need massage, not scans.

And if it's not that, then it probably has something to do with the paralysis tick which the Bear took out of the nape of my neck two days ago. It was hidden in my hair on the left side, right above the area no longer served by lymph nodes. The bite itself is swollen, seeping and as itchy as hell. Dr Rosie's guess is that the tick is responsibly for both the pain and the swelling, but she's given me the scan referral so I won't spend days winding myself up into a state about it.

I would rather she'd just said it's nothing, come back in a week if it doesn't go away. If she immediately gives me a scan referral, surely she must think it's bad?

She says not. But my brain's not hearing what's spoken. Only what's unspoken.

The Scary Man is still behind the door.


And then there's that exquisitely sore spot over my ribs. Rosie says a new cancer wouldn't be painful in itself, but it would expand and place pressure on the surrounding tissue- and that would eventually become painful.

She couldn't find a lump, neither pebble-like nor the texture of a firm jelly. That's good, right?

And I have a perfectly rational explanation; when I went to make coffee yesterday with my stovetop espresso maker, I realised with a wince that I'd been bracing it against that exact spot on my chest to open it. It's damn hard to open, but I'm bloody-minded and don't want to hunt up the Bear every time I need something done in the kitchen. So I do it myself.

I've probably given myself some sort of deep tissue bruising there. Idiot.

And then I remember my diagnosis, and how I went to the doctor because I knew there was such a thing as a coincidence.


You see, I can explain it all away, but it doesn't stop the Scary Movie in my head. Until the symptoms go away, the fear will lurk in the back of my mind waiting for an unguarded moment to attack me. Swinging from the rafters, or hiding in a plate of mushrooms.

And if I'm honest, it's a much-needed reminder of what others are going through. Not just my friends in the Pink Sisters, though so many of them stand exactly in these shoes at any given moment; no, closer to home there's someone going through this every day in silence. Someone who's only ever seen the Scary Man win.

His mother's arm shattering nine years post-mastectomy, her bones honeycombed with cancer.

His lover pushing him away with a look, too embarrassed by her disfiguring tumour to let him touch her.

My Bear is doing it tough.


There are two ways for loved ones to deal with Life After Treatment. They can become completely paranoid, hearing the constant white noise of terror as clearly as their beloved does, or they can go straight into denial.

I'm not sure which is hardest to deal with.

All I know is that it's hard for me to watch the Bear struggling with his demons right now. He has no script for this part of the movie, despite his two agonising rehearsals. I suspect he's only just realised that the fear isn't going anywhere. If I survive, it's conditional- always. There is no end point but death, and if I don't die he doesn't know any way to move on from here.

It's not like I'm back to normal. I'm way better than I was- of course I am- and I'm doing so many things that I used to do. Helping feed the turkeys, looking after the vegie garden, clearing the lagoons, cooking, even occasionally cleaning the house (make that very occasionally).

But peppering the normality there are all sorts of reminders. The morning exercise and stretches. The tablets morning and night. The occasional appointments. The massages. The frequent rests, where I can do nothing more than sit down with the laptop and play silly games or make Bitstrip cartoons.

Worse than all that are my new little quirks and my all-too-big brain explosions. My mind's all over the place, thanks to being poisoned. I can tell the Bear exactly what he said to me two weeks ago one minute, and completely forget a phone message from two hours ago the next. The other day I went to put my swimmers on and, because they were partly inside out, had to spend a good thirty seconds staring at them to work out where to start. This, from the woman who used to untangle everyone else's knitting snarls? I don't even recognise myself.

I see the Bear's fear in his eyes. Is she getting dementia? he wonders, terrified beyond words.

The Arimidex gives me odd and unpredictable moments of insanity. I am suddenly engulfed by heat, or something small goes wrong, and I plunge from completely rational to a screaming mess (or, less often, a tearful mess). Everything is too much trouble, and everyone can just fuck off and leave me alone because I've been here once already with menopause and it wasn't fun then and it's not fun now and I don't want to be here.

I have zero control of what I say at these moments. I look back later in complete humiliation, embarrassed by my own lack of compassion. Honestly, I'm not like that. I'm a very resilient, patient person.

I was a very resilient, patient person. Sometimes the Bear looks at me as if he's wondering who the fuck I am, and what I'm doing in his house.

And whether he can cope with this for a single second longer.


Of course, I can't persuade him to see anyone about his scrambled feelings.

"I'm not talking to a stranger," he says.

Useless to point out that unless we happen to have a friend who's a therapist, we all start out talking to a stranger and hoping they're the right one when we start counselling; he's a man's man, the door to his feelings well and truly bolted shut, and he's not opening up to someone he hasn't learned to trust over a period of years.

So we struggle through each day, sometimes connecting, sometimes locked in our own private hells. Times like this don't help, when I feel I have to tell him I'm seeing the doctor about a symptom but want nothing more than to keep it to myself and pretend it's not happening.

There are times when I honestly think it might be easier to do this alone.


See, I'm having enough trouble coping with my own head and keeping the Scary Man behind his door. Things just jump into my mind sometimes, and once they're thought I can't unthink them.

Like this. I finished clearing the azure kingfisher's lagoon a week or so ago, and the logical thing to do next was start on the big lagoon so the bloody salvinia doesn't wash back in in the next flood.

I've made a bit of a dent in it, with my brother's help to clear the edges and the Bear carting the drained weed away every day.

But yesterday I stood looking at that vast expanse of work-to-do and before I could stop him, the Scary Man leapt out and said you'll be dead before that's finished.

So now I'm fighting him off. Pushing him back behind the door. I went inside and found the Ixodes (it's a homeopathic remedy for tick bite) and took a dose, and took another this morning. I massaged my chest, and when I got tired I got the Bear to massage it some more. This morning I went back to the hoola hooping on the Wii, because I know it helps stimulate the groin lymph nodes into action, and I did my deep abdominal breathing while I gyrated to give those nodes an extra kick in the guts.

And yes, it does feel a little better now. There's still a sore spot, but it's not quite as tender and the swelling has receded a little. When I can manage to put the Scary Movie on pause for a moment, my instinct is saying it's all going to be fine.

But only time will give me the answer. And even if it's a reassuring nod, it'll be valid for this screening only. The Scary Man is someone we all have to learn to live with when the Freeloader comes calling.

I'll keep you posted.

Monday, October 14, 2013

Kingfisher dreaming

The spectacular bird photos in this blog were taken by my brother, Jeff Melvaine.

When your world gets invaded by the Freeloader, a lot of things go to hell other than your health. The Bear describes it as a giant 'detour' sign erected in your path; wherever you thought you were going, you can just damn well think again. Life has other plans for you.

For the best part of a year, we were both consumed by my cancer. The Bear had to do my share of the work around the farm as well as his own, on top of trying to take care of me. Certain things just couldn't happen.

And then there were the floods; three of them, an unprecedented number for one summer. Along with the inconvenience, they delivered us a little present- one that we couldn't deal with at the time. I was just too damn sick, and the Bear was just too damn busy.

Ironically, given my condition, the gift was of the toxic and uncontrollably multiplying variety. Let me introduce you to salvinia molesta, the cancer of our waterways.

It's the closest thing you'll find to the Freeloader in the world of plants, an introduced aquatic pest which flourishes in our hot, humid conditions to the point where it can double in area in three days. It forms a thick mat over the surface of still water, pushing tightly against its neighbour with roots entwining till it's curving upwards with the pressure, growing outwards till there's no room left to grow.

Smothering everything underneath.

It kills lagoons.


When we first arrived here, both our lagoons looked like that. Jools and the Bear and I laboured hard back then to clear at least the smaller one, in the hope of luring back some of the local bird life. We live in a wetland, and the birds should be plentiful and spectacular- but many don't appear unless they can access still, healthy water in relative privacy. Our dams were just too open, but the small lagoon was a haven- if only the water was visible.

Salvinia's a bastard to get rid of. You have to remove it manually. It's heavy, exhausting work. It took us forever last time, just to clear this small pool.

But in the weeks after we finally lifted the last piece of sodden, fragile weed off the surface, a small miracle happened. One by one, lured by the safety of a clean pond surrounded completely by trees, the birds appeared.

At first it was just the normal locals, like this yellow robin, happy to have a quiet place to bathe.

Then the herons got word, by instinct or bush telegraph- who knows? They appeared first at the lagoon, and as they remained unmolested they'd become more confident and swoop across the lawn to check out our dams as well. Almost every morning we'd see them stalking along, eyeing the mosquito fish then stabbing at them with laser accuracy.

Many others came- honeyeaters, wrens, friar birds, all chirping and splashing and enjoying the cool water through the heat of summer. But nature saved the best for last.

With a flash of brilliant colour amongst the trees, the azure kingfisher made his entrance.

We never saw him until he moved; somehow the burnt umber and cobalt disappeared into the shadowy backdrop of the trees. But as he got more cheeky, he too graduated to the dam, allowing my brother near enough to photograph him properly with the aid of a telephoto lens. And then the glory of his shimmering costume, till now seen only as a darting flash of brilliance in flight, could be captured under lights.

We fell in love with him immediately. He became more and more bold, and when we strung a rope across the dam one day we were delighted to see him adopt it as a vantage point for his fishing.

Eventually he turned up with a mate; once I was treated to the incredible sight of him competing with another male for his girlfriend's attention, hopping and twirling and raising his iridescent wings on the end of our wharf in a mirror-image pas de deux with the enemy, while Madame preened indifferently on a nearby log.

But then, the Freeloader. The floods. The salvinia.


My lack of energy after treatment finished depressed me at first. Then it made me angry. Everywhere I looked there was something that needed to be done urgently, and yet I was chained to my lounge chair by lethargy. I'd walk past the small lagoon, filled to overflowing by floodwater, and see the floating fragments of salvinia that had washed in from the larger pool upstream. They were few and small at first, manageable, and I'd think I must get in with the kayak and clean those up. It had taken me months after we cleared the lagoon, circling it and picking out any stray piece that had surfaced, to be confident it was clean. I knew how long it'd take to get back to that stage if I let it go.

But I couldn't do it. I simply couldn't. My body refused to obey me.

By the time my body was up to the task, the mat of green was complete. I was furious. And the kingfisher was gone.


Focus outside yourself.

The mental pressure of serious illness is tremendous. Nobody prescribes tools to deal with that. The doctors are too busy with surgery and poison infusions and radiation and hormone tablets and god knows what else to deal with your head as well. Maybe they'll toss you an antidepressant afterwards, if you still have the capacity to ask.

I self-prescribed.

Focus outside yourself.

It helped me when I was waiting for the results of tests, noticing other people around me going about their business, making it my task to praise them where praise was due and taking heart from their smiles. No matter how ill I was, I could still bring pleasure to other people if I could only stop focussing on myself for a moment.

And in that moment, I could feel joy again.

But by the end of treatment I was beaten down. I was having trouble thinking of anything but my own frustration, my own inability, the thousand little things I used to take for granted that I could no longer manage without pain or exhaustion- or, indeed, that I could no longer manage at all.

I was just too tired to think of anything outside myself.

But that lagoon- that damned lagoon. It kept niggling at me. Spring came and was without its usual brilliance; the kingfisher was gone, and even the rainbow bee eaters kept their distance, swooping overhead chirruping but never coming down to dance on our lawn.

Perhaps if I just started... and paced myself... I could find some open water for the kingfisher. Just a little bit every day.

It could count for part of my exercise.

I focussed on the kingfisher.


I tried using the pitchfork and rake, as we'd done the last time, and quickly realised that my arm wasn't up to it. The weed, spongelike and packed with moisture, was far too heavy. I was exhausted in minutes. I had to find a better way.

Milk crates.

I could wade into the water, fill a milk crate piece by piece, and drag it onto the bank to drain while I filled the next one.

Painstaking... but it was all I could manage.

And so I did.

Every day.

For two hours. Ten crates a day.

Piece... by piece... by piece.

For the kingfisher.


At times as I stood there in the water, repeating the simple action like a counting of the beads, it became a place of deep peace for me. My mind would wander gently through unrelated scenes, as though I was dreaming. Once it seemed that each sodden lump of dripping weed was a fragment of my cancer, so slowly and painstakingly attacked, the whole process never-ending as I strove to keep ahead of its implacable increase, with recurrence always a possibility despite my pains.

Yet, in the whole scheme of things, barely significant.

To the universe, this one lagoon was as nothing. There were other azure kingfishers, other clear still pools for them to fish in.

But it mattered to me. My life mattered, and this particular bird mattered. This had become his home, his breeding ground. By my quiet homage, I could restore order to his world.

In my mind's eye, I could see him already, zooming from one side of the water to the other like a bright-feathered dart. I imagined him there many a time as I worked. I could see him.

Bungawalbin. Bundjalung for place of the waterlilies. Standing on Aboriginal land, waist-deep in a lagoon strangled by a whitefella's imported madness, I was kingfisher dreaming.


It took me two and a half weeks to see a difference.

At first, I didn't dare look at the big picture; it was too overwhelming. As I took away a patch of weed, the huge remaining mass would sigh, relax, spread out to cover the hole.

I could easily have given up. But the longer I went on, the more stubborn I became.

It's just like chemo, I thought, my back aching as I bent again to reach the pieces floating away from me on shallow water. If I stop, what's the point of what I've done already?

So I kept at it, a little every day. And then, two weeks in, I started to see the mosquito fish.

Almost transparent, barely two centimetres long, they swarmed in the water around my hips as the weed broke up.

This is what he comes for, I thought. He can see them now.

A few days later, a strong wind sprang up and kindly pushed the loose weed to the eastern end, away from the tangled mat I was working on to the west. At last I could see what I'd done. I was barely halfway, but there was a wide stretch of clear water.

And the day after that, as I came down to the water's edge in the late afternoon, a spatter of cobalt splashed against the olive palette of trees.

I wondered for a moment if I'd dreamed it. But as I looked up into the trees, there he was.


Velcro-dog stepped up to my side then, sniffing curiously at the water's edge. When I looked up again there was only the gentle bouncing of a slender branch to see, and a bright patch of joy in my mind.


I stood for a little while, hoping he'd return, but it wasn't to be. I looked over my work then, realising that my job was far from over; if I stopped now, the lagoon would be choked again within a week. I sighed, scoured the trees again. Turned away.

I'd be back again in the morning.

And as I headed up the bank, a high-pitched squawk stopped me in my tracks. High in a wattle tree above the lagoon, two king parrots flashed their scarlet chests at me and squabbled over the blossoms.

There are more joys to be had than kingfishers, if I can only take my mind outside myself and dare to dream them.

Wednesday, October 9, 2013

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.

Saturday, September 28, 2013

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

stage left




But as the dark velvet brushes your face
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

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


Tuesday, September 24, 2013

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....


* 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.

Saturday, September 7, 2013

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.


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.