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.

Redefining normal, and Ferdinand's new job

Okay, I am over the whining.

It's time to stop wishing everything was the same as it used to be. It's time to stop moaning about it till I bore everybody to tears, including myself. Everything is NOT the same, and won't be.

When I put on my Aunt Annie hat, I know that my complaints and my tears and my anger have been absolutely understandable- a part of the grief process that I had to go through- but they haven't changed a thing. The picture before me is still exactly the same.

And if I don't like looking at it the way it is, then maybe it just needs a new frame. That much I can change.

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

Hammering together a new frame for my circumstances is, of course, a work in progress. I don't kid myself that I'm never again going to curse the day the Freeloader came and stole my peace of mind, my energy, my pretty and symmetrical appearance and my ability to do so many things that I'd always taken for granted.

Of course I will. (Probably tomorrow.)

But honestly, you can't keep on wailing about something that can't be changed without doing yourself further damage. You can't keep on looking on something that's in your face every single day as a negative- not without becoming negative yourself.

So an honest look in the figurative mirror is called for here, because not everything BC (you need to ask? Before cancer, of course) was really so rosy.

Was it?

Tell the truth, Candy.

And if I'm honest with myself- scathingly, brutally so- there are some ways in which my life will be better after this experience.

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

I mean, let's take Ferdinand. Yes, he's still around, my little fishy friend. He's got a new job to do these days, and he's doing it really well; there'll be no flushing him down the loo, or releasing him into the handbasin. Ferdi is an important part of this new frame I'm making.

An aside, before I tell you how Ferdi is making my life better. This came to me while I was riding the bike this morning, and I don't want to lose it to the impermeable mists of chemo brain- so here it is.

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

Why a perfectly rational person invented a talking fish in her stomach during chemotherapy (and still believes in him)

I'm sure some of you think I'm completely loopy, talking about a stomach-dwelling, ailing fish- a complete figment of my imagination- as though he really exists.

Well, too bad if you do. Ferdinand the Fermenting Fish- or, if you must, the concept of Ferdinand the Fermenting Fish- helped me stay sane during chemo like nothing else could.

Does that make me nuts? (Do I look like I care?)

Ferdi. They think we're nuts. Shall we explain?

If I put Ferdinand (or the concept of Ferdinand) on the couch and psychoanalyse him, he smiles serenely back at me and dissembles at once.

You're better at taking care of others than you are at taking care of yourself, he explains. Waving a fin at me, in the absence of a reproachful finger.

So that's where I came in. If you could reframe the whole horror of chemo and convince yourself that you were looking after ME while the poison was screwing up your insides, it was easier to cope with being needy and hard to please and bloody uncomfortable all the time. 

Guilty as charged, Ferdi. It was much easier to look after a poor, dull-scaled, half-dead goldfish in my stomach- or, if you will, in my mind- than to acknowledge that I was being poisoned. Being poisoned is terrifying.

Looking after a sick animal? Easy as. I've always been a frustrated vet.

All hail the power of imagination, which is still part of my picture.

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

And so, to Ferdinand's new job.

I haven't quite got over the whole chemo-screws-up-your-tastebuds thing yet. And strangely, the things that kept Ferdi happy while I was in the middle of being poisoned are often the very things that now make him unhappy.

Anything frankly sweet gives me an immediate injection of aluminium into my mouth. Cake or sweet biscuits? Flavoured milk? Fruit Tingles? Sorry. No can do. Ferdinand says no.

And the sweet things I used to pig out on BC- ice cream, and a thousand varieties of chocolate? Ferdi says no to those, too. The aftertaste simply isn't worth it. The enjoyment is gone.

(He accepts Lindt 70% Cocoa, mind you. It's not so sweet and satisfies us both as an indulgence. And he tolerates a little Tia Maria in his milk, as long as it's just the one.)

Then there's my savoury tooth. Oh, he lets me eat anything I want that's savoury- no problem at all! But when Ferdi says enough, I stop.

This is the woman who used to serve herself as much for dinner as she served her rake-thin, hyperactive partner (the one who works outside All Day and doesn't even own a computer, let alone allow himself to sit in front of one all day).

This is the woman who could never resist a second helping of something delicious, and maybe a third.

This is the woman who, faced with a choice of two delicious options, chose to have both regardless of her actual appetite.

I mean, I had been so out of touch with my actual appetite for so long BC that I constantly confused wanting food with needing food. Food was the answer to everything negative- boredom, sadness, indecision, feeling unloved or lonely, lack of self-esteem- you name it, food stuffed it back in its box. I knew I was doing it, but it had become such a habit that it was well nigh impossible to stop.

But Ferdi doesn't let me do that. He has elected himself Guardian of the Precious Stomach; now that he's comfy again, he's damned if he's going to let me pollute his tank. I find myself doing things that I've never done in my life before, like refusing a sweet biscuit because Ferdi knows it'll make my mouth taste like shit, or (heaven help me!) even throwing away half of the second sushi roll I'd bought for lunch yesterday, because Ferdi said yes, it was very nice, but he'd had enough now.

Unheard of.

See, Ferdi wasn't around when all the bad seeds were sown around my eating habits. He wasn't there when I was a child, when sweet foods were so often a reward and over-indulgence was modelled every day. He wasn't there when I was first hitting puberty, and a rude and insensitive adult told me over and over that I was too fat and should have a breast reduction. And so on. There are many reasons why I've been overweight for most of my life, and they all gained traction inside my head thanks to some outside, negative event.

But Ferdinand is not the least bit influenced by my past; he's not even interested in it. Ferdi lives completely in the now. And now, he doesn't want to feel sick. He doesn't want a nasty taste hanging around. He doesn't want to feel bloated again.

Bless his shiny little scales. I may yet get down to a healthier body size without feeling deprived in any way.

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

Another part of this new frame is a different way of looking at my need to exercise. For a while I've been banging my head against the wall of my slightly addictive and very perfectionist nature; refusing to miss a day on the Wii, but resenting the imposition on my time at some level too. Constantly trying to beat my last high score, and thinking how stupid that was at some level too. Being scared to take a day off, in case I never got back on again because my record wasn't perfect any more.

This time real life intervened, helped along by an awareness of someone else's needs, and saved me from myself. Promising to let the neighbours' dogs out a few times a day, while they worked unusually long hours, helped me out with that one. I realised that walking over there and back was exercise. Cycling over there and back was exercise. Walking with the dogs once I got there was exercise.

I know, I know. All of that is obvious, really, unless like me you have that tendency to try, always, to compete against yourself. But I saw the light. Nailing myself to the Wii for an hour every morning wasn't the only way to keep myself healthy, and the sky wasn't going to fall if I sometimes missed a morning on their godforsaken daily chart, because who the hell cares? The Wii is wonderfully useful, but the stupid chart is just wallpaper around my addiction to perfection.

So part of the new frame is counting everything physical as exercise. Yes, I still get on the Wii most mornings, because the step class is like dancing to warm up (I love dancing) and the hula hooping is boring but it's good for my lymph drainage (yes, I asked Miss Sunshine) and the boxing is fun as well as aerobically strenuous (without being too much for my lymph-challenged arm).

But then I go for a ride on the pushbike, up and down the road with the birds singing and the trees rustling around me, to make up the rest of the hour I need to do to help keep the Freeloader at bay. Or I count what I'm doing around the farm if it's reasonably active, or I count going over and letting the dogs out and walking around with them.

Exercise doesn't have to be a prison. It was me who put the bars up. I need to lighten up and let myself have a life, and that's just a matter of the way I look at things.

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

Mr Lincoln. The best-smelling rose in the world.

And while we're talking about having a life, that's quite enough sitting at the computer for today. I need to go prune the roses- months late, but better late than never.

And that, in my redefined normal, counts as both having a life and exercise.

Fragile.

Life after treatment. Oh, how I love thee.

Or not.

Of course, I use the words 'after treatment' a little loosely. In medical terms, the five years of hormone tablets (which, after less than two weeks, are no doubt deciding how rather than whether to torment me) are still classed as 'treatment'. The possible torments to come are listed on the insert inside the pack, and so I suspect that my frequent nagging headaches, increasing mild joint pain and almost constant awareness that I'm too hot in the middle of winter are less than coincidental; but after just twelve days I won't jump to any conclusions.

(Yet.)

Those are inconveniences, though, compared to the iniquities of being chopped up, poisoned and burned alive. Let's say the most monstrous part of the treatment is over.

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

Life after treatment is full of reality checks. There's this burgeoning hope, when you finally get to the end of surgery, chemo and rads, that life might finally get back to some sort of normal. And daily, or in my case nightly, that gets tapped firmly on the head.

Back in your box. It's never going to be *normal* again.

See, I've been getting a bit of nerve pain in my chest after the radiotherapy. Naturally, good little patient that I am, I decided to self-medicate instead of whining. I went back on the nightly Lyrica for a while. Magic stuff; it kills the night twinges stone dead, and I'm not usually troubled again till mid-afternoon.

Only problem is, it also kills my consciousness stone dead, to the point where on the first night I actually rolled over onto my left side in my sleep and (for once) didn't automatically wake up. Usually I self-regulate on this, because I'm so fucking terrified of losing the function of my arm to lymphoedema. I have this little warning system in my head that goes off like an alarm clock in a tin tray the moment I roll over. (It doesn't make for a good night's sleep, mind you, but it makes for an arm that still works.)

But when you're deep in a drug-induced sleep, you tend to ignore your subconscious and its urgent midnight memos. I got a great night's sleep- right up to 8am, when the throbbing ache in my left upper arm alerted me to the fact that I'd cut off the carefully maintained new lymph pathways on that side of my body for god knows how long, and my arm was starting to fill with fluid.

Panic is probably too mild a term.

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

We got it sorted in the end, with frequent massages and cool cloths (and, yes, the vibrator). The swelling did eventually go down, though it took a couple of days. But since then I've woken every morning in a cold sweat, feeling my arm. It does feel peculiar to me, and I'm not sure if I'm suffering from what one of my Pink Sisters calls 'cancerchondria' or whether I actually do have a lurking problem that's just waiting to leap out at me again.

I check my upper arms against each other every morning now, to see if the left one's swollen. But it's pointless, because I'm like an anorexic who always sees that left arm as fatter than it really is. I sometimes ask the Bear to look for me, because he can see straight still. (Cancerchondriacs can't.)

And sometimes I say nothing and worry silently, because the Bear doesn't need to hear every single thing that's going through my head. One of us going nuts is enough. I rub my arm, though, just in case.

Will it ever end? No, it won't. The reality is that when they took away all the lymph nodes under that arm, they left me with a permanent vulnerability.

Sleep will never be as easy again.

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

It doesn't help that I still have that semi-anaesthetised prickling in my hands and feet, thanks to the chemo. Sometimes the tingling in my fingers extends right up to my wrist, and then I'm sure the lymph is gathering in there and can't get away, even if I haven't accidentally slept on my arm.

I don't rest till it abates. I worry.

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

Of course it's not always like that. Some days, like this morning, I get up feeling okay. My arm looks fine, even to me, and it feels okay too. So I get on with my day as best I can, doing my exercise and then looking for something that will make me feel normal instead of bloody fragile. I'm sick of being fragile. I'm sick of being sick. I want to be better now.

So I clean up the kitchen, or paint the treehouse, or write my blog. Anything to make me feel competent again.

Today I decided I could go and do something useful out in the bush again. It's nine months since I did that. But the treehouse is progressing, the verandas joining it to the house are getting closer to completion, and now we need two more posts for the roof over the stairs. So the Bear and I went out together and fossicked around in the jungle this morning till we found some suitable trees already on the ground, where the storm that nearly killed him had thrown them.

Of course that was months ago, and with all the wet we've had, the lantana had grown over them till it was too treacherous to get near them with the chain saw. So Bugalugs here decided that her first bush job was going to be getting the pruners out and cutting back all that lantana, so the Bear wouldn't trip on it with the chain saw running and accidentally cut his leg off.

See, I live in fear of that happening, because he is such an intractable patient. Coping with the man flu is a barrel of laughs compared to coping with my Bear when he's actually seriously hurt himself. If he ever did cut his leg off, I swear he'd tie his belt around the stump, hop back to the house and smear it with aloe vera while he waited for the kettle to boil so he could have a cuppa.

One time he put an axe into the top of his foot, and it took me six hours to talk him into going to the hospital. SIX HOURS. The doctor was horrified. She looked at me like I'd put the bloody axe in his foot myself. Mind you, by the end of that six hours of arguing with him he was lucky he didn't have a kitchen knife stuck in the other one.

MEN.

So off I went to try to create a bit of a safe zone for Mr Gung Ho. Which was all fine and good, to start with. I was a sensible little cancer patient, I was. Took my time. Rested frequently. Decided that clearing one tree was enough, and the other could wait till tomorrow.

Came back to the house, and discovered that my left arm was so weak I literally couldn't hold a cracker biscuit. I couldn't close my fingers firmly enough. And my wrist was collapsing anyway.

WTF?

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

So it's not just my mind that's fragile. It's my body, too- still. And maybe, always.

That's scary.

All I was doing out there was closing the pruners on each branch, then carrying the pruners in my left hand while I pulled the cut lengths away with my right. It wasn't even hard work. 

It was nothing like what I used to do, carrying whole rounds to be split for firewood, lifting my end of a whole log and carrying it to the house with the Bear, throwing that blocksplitter round like it was child's play.

It wasn't even hard work.

But by the time I'd done it for half an hour, my left arm was basically useless.

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

So it's looking like my farm work will never look the same again, either. I won't be able to do what I used to do.

I try not to think about how that might translate to working with children. I never had to think twice about it before; if a child was upset, most of the time I'd end up sweeping them up in my arms and sitting them on my left hip, holding them there with my now-compromised left arm, talking quietly to them until the sheer closeness comforted them.

How the hell is that going to work now?

Don't think about it yet. Maybe it'll improve.

Squadron of pigs cleared for takeoff.

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

The Facebook meme that greeted me when
I gave up trying to hold my cracker and went
online for some comfort...

Maybe another part of my life is over. Maybe I just have to accept that I'm too fragile now to do even moderately heavy work. Maybe I have to redefine myself yet again.

I wouldn't be the first to have to try. I'm not the only one who's going to discover their limitations when the treatment's over.

Maybe I'd better just go back to music and words, and realise how fragile I am.

Sting said it best. He might have been writing about my life here in the Bungy, post-cancer. Go on, have a listen. It's a beautiful clip.

And on and on the rain will fall
like tears from a star, like tears from a star
and on and on the rain will say
how fragile we are... how fragile we are...

Watching my life go by

It's hard, this recuperation business. I'm caught between two devils- crushing fatigue, and a maddening sense of being useless. I'm constantly fighting the dual meanings of 'invalid'.

I start the day fully aware that I'm the noun form. I am, indeed, an invalid. The exhaustion, regardless of how many hours I slept, leaves me in no doubt. I have a terrible time waking each morning. I want nothing more than to stay curled warmly under the doona for another ten minutes, or hour, or- what the hell- why not all day? That's the legacy of radiotherapy- an enduring, alluring coma-state.

But I know that if I don't get up, I won't ever get to the compulsory 'exercise' segment of my day; I'll lose the will to care about staying alive. And then I'll descend into the depression that's just out there, on the edges of my consciousness, waiting for me to slip up. You're just watching your life go by, it whispers. Why bother?

So up I get. Onto the Wii, working out as actively as the tightening radiation burns and my fear of lymphoedema will allow for an hour or so. That much of my day is scheduled, valid, necessary.

Then, after my morning Tablet Time (mineral and vitamin supplements: all valid for survival purposes), begins the 'what shall I eat' portion of the entertainment. Ideally, I need to lose a bit of excess avoirdupois to help keep the Freeloader at bay for as long as possible. For all that people tell me I look fine, I know that I'm carrying unhelpful lard. My best chance of sloughing it is to be careful what I put in while I'm committed to working out.

So I might grab some fruit. Maybe some yoghurt, though since chemo anything that's vaguely processed and the least bit sweet leaves a vile metallic after-taste in my mouth. (Shh. I can't bear plain yoghurt. Yuk. Yukitty-yuk-yuk-yuk. And don't preach carbs at me, either- I'm not a fan of the heavy breakfast. Can't do it. I have lots of food-related 'can't do's since chemo.)

And now it's maybe 10am. My activities thus far have been all in the interests of staying alive, and I feel like I don't even know my own name. I don't recognise this person who can't get up and, when she does, concentrates exclusively on exercise and diet. Once upon a time, I used to spring out of bed when the alarm went off, dress, grab something or nothing to eat- who cares?- and fly happily out the door to be useful to someone. Once, to a full-time job nurturing the next generation of musicians. Lately, to fill a yawning gap in some poor director's childcare roster at a moment's notice. To reassure parents, smiling, that their children are well looked after. More than all that, to strive each day to make a small child's world a better place.

That's where the point of my current existence starts to seem questionable. I start to feel the force of the adjective: invalid. For the rest of the day, there's a vacuum awaiting me. Nobody expects anything of me. I am not helping anyone. Nobody has a better day because I was there.

I am leading an invalid existence. Pronounce it as you will.

Unless I have a staying-alive appointment, there's nowhere I have to be. There's plenty to do around the house, sure, but I know that anything I start may be suddenly curtailed by the onset of another bout of radiotherapy-exhaustion. I know that by 3pm or so, I'll just want to put my head down again and sleep, and that will be brought forward by any heavy work.

The old me I'm searching for needs more than that. I've never been satisfied to be a housewife. I feel a need to make my existence felt in that small window of alertness, and sweeping the floor or doing the dishes just doesn't cut it in my internal measurement system. Neither does recreation; I'm bored to death with books and magazines and puzzles and DVDs. I just want to feel like me again.

I want to matter, the way I used to.

But mostly, I don't have the brainpower to do it anyway, and I certainly don't have the physical strength. I have to be content with dropping the odd comment into a parenting thread on Facebook, and hoping that it matters to someone. Chatting to my Early Childhood colleagues, and hoping that I help someone straighten out a problem that's troubling them.

Writing the odd post here on the Freeloader, and hoping it makes someone feel less alone.

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

At some level, I realise I'm just battling a label that I don't like. Somewhere in my past, I had lazy thrown at me. More than once. Many times. It wasn't fair then, and it's not fair now: I know that. But our psyches are peculiarly unkind when it comes to letting go of baggage- especially when we're tired. Especially when we've just been through eight months of hell.

Lying around chatting on Facebook, reading novels, doing Sudokus- it all feels lazy to me. Lazy should be my friend right now. Lazy should be helping me get better. But all it's doing is sitting on my left shoulder, whispering poison in my ear. Get up. Be useful. You're wasting time again.

It's all nonsense. My brain knows that. But my subconscious is a different matter.

My subconscious made me stop outside the childcare centre the other day, and consider going in to tell them I was available to work again. My brain put paid to that in thirty seconds flat, thank heavens. Turning up for work and having to go home again halfway through a shift would hardly enhance my reputation. My brain knows that I only have half a day in me at most, not to mention the risk of some dear child elbowing me in the radiated chest and causing me untold agony.

So I sit here trying to convince myself that it's okay to just rest. I sit here watching my life go by, minute by dragging minute. I try to remember how I felt during chemo, when it was so hard to believe that it would ever end. This too will end: my brain knows that.

My subconscious is a different matter.

Loop theory

(Challenge: see if you can pick the cunningly concealed, very exciting piece of news in this post.)

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

I did not have a happy menopause.

Think night sweats so diabolical that I had to leap right out of bed and run outside in the middle of winter. Think mood swings so intense that I completely failed to conceal from my then partner that I was head over heels in love with someone else (whoops). Think complete failure to maintain a straight line in either thought or behaviour.

I was a right old mess, I was. And it lasted for over six years.

Well, here we go again. This evening I took my first hormone therapy tablet. Arimidex is designed for women who've already endured the 'change of life', but that doesn't stop it throwing you straight back into the bull pen.

Pity my poor Bear. This is his third round of breast cancer, but I do believe it'll be round four of Living With a Menopausal Maniac. And I'll be responsible for two of those.

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

Along with the joy of menopausal loop theory- send no money, we will bill you!- comes the delight of rattling like a maraca in the hands of a Parkinson's sufferer for the next five years. Yes, I don't just get to take the Arimidex; I also win a concurrent five years of glucosamine and krill oil to counteract the joint pain, plus ditto of calcium and Vitamin D to counteract the reduction in bone density.

I did not enjoy returning the granny-style pill organiser to the dining table tonight. It's bad enough wearing granny bras.

Ah, cancer. How you piss me off.

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

So why, you might ask, am I being subjected to this latest indignity?

The idea of the Arimidex is to starve any remaining fragments of hungry Freeloader of yummy, delicious oestrogen by binding to the enzyme needed to produce it. That puts a chemical spanner in the works of the oestrogen production line and the whole thing comes to a crashing halt. (At least, that's what I gather from the page upon page of information provided with my script. I'm not a doctor, I'm a wild-eyed woman with chemo brain. Look it up before you quote me.)

Mumbles reckons that this drug, on top of the treatment I've already received, improves my chances of avoiding a recurrence by about 60%. That sounds pretty radical to me- I may have misunderstood him- but the message I get is that I'd be a fool not to try it. So try it I will, side effects and all.

If my hair starts to fall out again, mind you, There Will Be Trouble. I like my Megwig, I do, but There Are Limits. I've only just got to the point where I can pinch the regrowth between my finger and thumb. Sure, having passed through the Monkey incarnation my head now resembles a silver-arsed wombat in retreat, but small steps. Small steps.

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

The Bear decided not to come in with me at today's appointment with Talk To The Knee. When we walked into the consulting rooms a neat three minutes before my designated appointment time of 11am, only to be told that Mumbles was running over an hour late AND there were four people waiting before me AND he hadn't even arrived from the hospital yet where he was doing rounds, the Bear silently turned on his heel and walked out.

Not a good sign. Even with my back turned to him I could feel the steam rising above the dreadlocks.

In the end, we went downtown and layered Bunnings Rage on top of Medical Waiting Room Rage for a while. May as well be hung for a sheep as a goat, and all that.

"No, we don't carry that paint in 2 litre pots." 

"Oh really? I bought two 2 litre pots here two weeks ago, you clown."

Oh alright, I didn't actually call the (non-)assistant a clown to his face, but if he'd had another neurone to match the lonely one banging around in his skull he might have been able to translate my tone of voice.

And wonder of wonders, one little phone call to Management and ... here comes another red-apronned fool carrying- yes- a 2-litre pot of my paint!

(Head. Desk.)

Painting, you ask? Yes, we've been sealing the wood on the treehouse where this
whole story started. One of these posts is the reason I found the damn lump in the
first place, so I guess I owe this building my life. Nice to be able to get back to it.

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

So by the time we were summoned back to Mumbles' rooms by the shrill of my mobile, which irritatingly interrupted our excellent coffees at Cafe Cappello, the Bear was in no state to take the Mellow-Mumbles gamble. He dropped me at the door and scarpered for a while with my full consent.

I grabbed the initiative at once; by now I was in no mood for mucking around either.

"Had a bit of a busy morning?" I parried, grinning as I looked him in the eye.

Back in the filing cabinet, Mumbles. Paging Dr Mellow!

"I love starting my day two hours behind the eight ball," was his wry riposte. Turns out the other oncologist was missing in action today, so someone had had double ward rounds.

Fair enough.

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

Writing the script for the Arimidex, he started to find a little twinkle as we manipulated our merry way to a Medicare-refundable bone density test. Hallelujah for my somewhat early menopause; apparently having bugger-all hormones left at age 42, according to a blood test way back then, might just swing me a baseline test that doesn't cost me my house. Or something.

Checking out my nuked chest, he agreed cheerfully that it was a remarkably mild reaction. Hardly burnt at all, really. I asked if the Lyrica I'm taking for the stabbing nerve pain (radiotherapy- another gift that keeps on giving) was compatible with Arimidex, and got the nod (hallelujah again).

Less worthy of hallelujahs was the list of possible side effects he reeled off, but at least the suggested fixes weren't all produced in a test tube. I was glad I'd taken a notepad, as there's no way my chemo brain would have remembered the shopping list by the time I got to the chemist. Also not gaining any happy-clappy praise was the news that my continuing peripheral neuropathy would go away when it damn well felt like it, not when it suited me.

Bugger.

I have no idea how we ended up talking about my cholesterol levels, but it's just as well we did. Turns out that those cholesterol-lowering margarines I've been using, to counteract the unwelcome effect of the chemo on my cholesterol levels, are full of phyto-oestrogens.

Not the greatest idea for someone who's had an oestrogen-positive tumour.

He pulled up my most recent blood test then- what did doctors do before the internet, I wonder?- and smiled.

"Your cholesterol's gone right back to normal anyway," he informed me. "So you can stop worrying about that."

(Done. Yay for me.)

He reiterated that my exercise regimen was a fabulous idea, as it would help with just about every side effect I was likely to experience. I have to admit to preening a little there. I've not missed a day since the beginning of radiotherapy, and as an added bonus I'm actually starting to drop a little bit of weight.

Nothing like a life-threatening illness for increasing one's willpower, eh? It would be ironic if it was cancer that finally got me down to my ideal weight in a sensible way. I've always been either 'quite a lot' to 'way, way' over... or, once, way, way under. My weight charts when I was young made a yoyo look sluggish, given my foolish attempts to diet my way to social acceptance by starving myself in between binges.

It would be nice to think that this cattle-car journey had given me something more, in the long term, than a lopsided chest and anaesthetised extremities.

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

And then, the crucial question. How often do I go under the machines to check for recurrences?

And the answer is... I don't.

Whew.

"There's no evidence that constant tests improve outcomes," Mellow reassured me. "In fact all those x-rays are counter-productive. If you ring me up complaining of constant back pain, we'll put you under the scanner again, but otherwise there's really no point. It puts you more at risk from all the radiation, and it makes you unreasonably anxious while you wait for the results."

And that made me a very happy little camper. Even if I do have to loop-the-loop back into crazyville for the next five years.

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

How did you go with the challenge?

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

Smack yourself heartily on the back if you spotted the fact that I enjoyed my first cup of coffee since DECEMBER. Yep, three months out from my last chemo I can finally enjoy the smell again. And that is a bit of loop theory that I'm very happy to entertain.

Monkey business, cliches and sonic screwdrivers

I've wanted to write for a while now about the language of cancer. The way we talk about it as a society. Honestly, it is so deeply culturally screwed that you'd need a sonic screwdriver to fix it.

Paging Tom Baker.

I mean, take the headline that appeared over the story in our local paper about my helicopter evacuation during the floods. I wrote the story, but the sub-editors saw fit to add the headline in which I was referred to as a 'cancer victim'.

A WHAT?!!!

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

Does that sell papers, calling someone a victim? Or is it just a moment of editorial thoughtlessness that's repeated over and over every time a cancer story comes up with no Angelina Jolie to drool over?

Nobody called her a victim. Victim. FFS. The very word implies a helpless, hopeless state of existence.

(from the Oxford Dictionary)

Passive? Are you kidding? Passive is a one-way street to dying from this bugger of a disease. I am taking part. Like Angelina, who grabbed her fate in both hands and started steering, I refuse point blank to be a fucking victim.

Sure, I might not be in control of everything that's happened to my body lately, I might have been unlucky enough to score a Freeloader that's done me some harm in the health lottery- but people, that doesn't make me a victim.

It makes me a patient now and then. That's all.

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

Sure, it's made me depressed on occasion. Of course it has. If it hadn't, you could probably diagnose me right now with some sort of detachment-from-reality disorder. Sure, I've spent some time feeling so terrified that I considered sleeping in the bathroom to save time.

But those moments are fleeting, in terms of eight months of vile treatment, and when I eventually bounce back I'm neither helpless nor hopeless. When I bounce back, it's usually with some sort of monkey business- because whatever life I've got left isn't enhanced by misery, and laughter is the best medicine.

Forget the 'stay positive' mantra, which is so far past its use-by date that it's walking to the bin on its own, trying to escape its own rancid smell. PLEASE. FORGET IT, and NEVER say it to a cancer patient again, or you might just find yourself with a sonic screwdriver up your fundamental orifice.

Stay positive? No. It's much more important for us just to accept the inevitable lows, ride the wave of despair, and then try to return to a point where we can laugh.

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

Example.

A day of feeling despairing about my appearance, after having to look at myself in the mirror naked from the waist up to apply cortisone cream to my radiation rash, had me on the mat. I would never be the same shape again; I'd never look like the old me, the one with the amazing and eye-catching cleavage. And god, my head looked ugly without my makeup and the Megwig hiding the awful truth.

My students were once inspired to give me a Dolly
Parton LP as a joke- can't imagine why.

How could my Bear love that? How could he ever find me attractive again?

This moment was a long time coming, really, but it was inevitable. When you've had your physical image ransacked like that, it doesn't matter how much you tell yourself that it's all vanity and physical appearance is overrated, or that it's all in how you look at yourself. Eventually, you have to face that moment when you realise that some of this experience is going to be with you forever, and you hate it.

I didn't need comfort right at that moment. I needed to vent without being censored by a society that is deeply uncomfortable with acknowledging hard truths.

I certainly didn't need some batshit-crazy hippy do-gooder telling me I had to 'stay positive'. (Paging Mr Baker!) I needed to experience that moment, survive it, and then move on with the knowledge that I could survive it.

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

And sure enough, it was followed the next day by the realisation that my peculiar pattern of hair regrowth made me look exactly like the star of that old Japanese kids' programme, Monkey.

Monkey Me! (Note: with
clothing and makeup on.)

Don't you think?

Of course, I posted that picture in my Facebook breast cancer group, Young Pink Sisters, because laughter shared works so much better than laughter alone. We don't pretend to feel wonderful all the time in there. We don't even TRY to be permanently positive. It's not possible.

But boy, do we bounce back. Boy, do we laugh.

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

There are no victims in that group, either. There are people who are probably going to die, there are people who are momentarily down at heart because of pain or fear or emotional suffering, but nobody is lying down passively waiting for the steamroller of cancer to crush them. You just don't. You wail, you scream, you hide under the doona for a day- of course you do. But then you push the bad stuff away- because all you've got guaranteed to you is this moment in time, and you'd best try to enjoy it if you possibly can.

We don't need to be bombarded with cliches to get through cancer treatment. They don't help one bit, and they're often counterproductive. Far more useful is to hear support of our stubborn refusal to quit, to hear (briefly!) what you're feeling- honestly- and to share our enhanced sense of the ridiculous.

Ridiculous? You don't think that word fits in the context of a possibly terminal disease? Think again. The other morning I found myself sitting in front of the TV with a vibrator in my armpit.

Stop laughing for long enough to listen.

See, this was my thinking. I'm getting massage from Miss Sunshine, the lymphoedema physio, to try to reduce the build-up of fluid in my armpit. Another technique she uses is ultrasound, which uses sound waves to break up the hardening lymph. I can reproduce the massage at home, but not the ultrasound.

Hmm. How else can I get deeper wave movement into my armpit?

Well? Are you still laughing? My armpit's gone down a LOT. It's ridiculous, but it's working.

And it got a lot of laughs, too, from people who really needed help that day to bounce.

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

There are plenty more cancer cliches out there where those ones came from. I already told you what I think of brave.

Survivor is dodgy, too, because it's just not accurate. How the fuck do you know whether I'm a survivor or not? Any day I could be diagnosed with a secondary. It could be tomorrow, or it could be in ten or fifteen years. That's something else that's permanent, that we have to stare down every day for the rest of our lives and learn to live through.

We are survivors of daily fear and sadness- that's all. Not of cancer.

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

And there are words that trigger some of us and not others. Journey is one. To many of us with cancer, that word belongs to joyous holidays and adventures, not to a disease that steals a year or more of your life.

It doesn't bother me, possibly because the word has less delightful connotations in the context of my reading and my life. I used it happily in the subtitle of my Fighting the Freeloader Facebook page- A journey through breast cancer.

I was thinking of the cattle trucks on the way to Auschwitz, not of Jetstar on the way to Hamilton Island.

I was thinking of the agonisingly slow and uncomfortable train trip to my first teaching job in the country. I was alone and heading into the unknown, with absolutely no reason to believe that anything but trauma was waiting at the other end.

I was pretty right about that, too. Being a first-year-out music teacher in a disadvantaged country school, with a Head of Department who knew absolutely nothing about the subject and was a sexist bully bordering on frankly abusive...

...not all journeys promise an exciting and recuperative break from the grind. Some are hell on earth.

I'll stand by my journey.

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

I guess what I really want from the language of cancer is a little more honesty. A little more authenticity. A few less glib cliches rolling off the tongues of people who haven't been there, and so haven't a clue what it's like.

If you don't know what to say, this is what you say: "I don't know what to say."

Hold the advice, unless you've actually been there and done it; hold the easy cliches, slipping from between the pages of your third-hand tabloid experience like cheap advertising brochures. Hold the facade of empathy, because you once knew someone who had cancer; hold the anecdotes with miraculous or disastrous endings, because none of those people are me.

Here is what you say: you make 'I' statements all the way.

"I would like to help, but I don't know how." 

"I feel so helpless." 

"I'm really angry that you have to go through this." 

"I'm so glad you came today."

And if you're writing a headline, enough with the labels. It's not a battle, we're not heroes, we're not being brave, we're most certainly not victims and we'll never know if we're survivors till the day we die. We're people with cancer. That's all.

And hey, all of you- don't take cancer so bloody seriously all the time. I had my breast removed, not my sense of humour. And even if I was dying, then like my friend Lucy the Lump I'd want to go laughing all the way. Give me some honest-to-god monkey business over a graveyard expression any day. Give me Monty Python, not Thomas Hardy. (Andrew Denton, I salute you: the first man to laugh about cancer, WITH the patients, on national television.)

And a little word of warning. I am lucky to have such clever and sensitive friends, who rarely make a verbal misstep. They're lucky too, because heaven help anyone who tries any of those cliches on me. I may not have a sonic screwdriver, but I'm very creative with certain other pulsating devices...

...and I happen to have one right here.