Wednesday, December 5, 2012

The wisdom to know the difference

When I was a little girl, my grandmother had thick, shining hair that hung right down her back, all the way to the top of her legs. I remember standing hidden behind the bedroom door, watching fascinated as she gathered it up in her hands, twisted it and wound it round and round, fastening it to her head with a multitude of hairpins until it sat meekly at the nape of her neck in a ladylike bun.

Even when young, my
grandmother wore her
long hair up. There are
no photos of her with
her hair down.
It seems that little old ladies weren't meant to display thick silver tresses down to their bottoms in public, delightful though it seemed to me. How I would have loved to touch it. I was distraught the day I arrived to visit some years later and discovered that, no longer able to reach behind her head to bind it up, she'd had it all clipped off into a bland shingle against her scalp.

Hair has always been magical within my personal mythology. My father used to sit hypnotised as I brushed my own long, thick hair, telling me how his mother always gave her hair one hundred strokes a night to make it shine. Perhaps he stood behind that bedroom door too as a small boy. Certainly it was the only positive thing I ever heard him say about his mother, from whom he'd been estranged for years; long, beautiful hair had the power to transcend his bitterness like nothing else.

Long and curly- that's the way
I feel like ME.
I remember feeling like I'd crossed some dangerous border the day I decided to get mine cut short for the first time. It suited me, mind you; I can't complain about that- though my father did, of course. It was hip and cool, and I wore it shorter for some years on and off, feeling like a rebel against the family tradition.

But I never shaved my head. And I never would. I'm not that much of a rebel. To me, a bald head is like a picture without a frame- unfinished somehow.

And after a while I got tired of the constant tweaking needed to keep my short hair looking tidy. I turned up my nose at the cliched image of the older woman with cropped hair when I came to the Northern Rivers, and over the last five years I've grown it as long as I can with a sort of what the hell, let's give it one last shot sort of daring.

But time's nearly up. Knock knock, chemo calling.

If I could fall on my knees and beg don't take my hair, if it would make any difference, I would. Of all the changes cancer could make to my life, this is the one I'm tripping up on- over and over. Not the breast. Not any more. (Hell, I even took both arms out of my shirt the other night. And it was fine. Scary, but fine.)

No, it's my hair that breaks my heart.

And it's not just about me. I know my long hair has a magical effect on the Bear, too. He's known me with short hair- but oh, how he loves it long.

I have moments of shivers across my spine when I think about the nausea and other horrible side effects of chemo, but I don't cry about it. I wrinkle my nose at the thought of radiotherapy burning my tender skin, but there aren't any tears. I worry about how much weight I might gain on five years of hormone therapy, but there's no weeping about it.

Mention my hair, and I implode.


But that, of course, is categorised under the heading things I cannot change. Mostly, I have the wisdom to know the difference. I wipe up the pool of Alice-tears (again) instead of letting myself drown in them, and try to turn my energy onto the small things I can do to change the way things are. Or, at least, to make things marginally more palatable.

Like, the bloody exercises. What a triumph yesterday, when my lymph count on my left arm went down instead of up post-surgery. I've been moving that arm relentlessly since the moment I woke up in recovery. I'm damned if I'm letting it seize up. When I was given the physio exercises some three days later, I realised I'd been doing most of them instinctively. I want my shoulder to move, and I don't want to wear an elastic sleeve, and perhaps if I do those damned exercises and massages every single morning without fail, I can make a difference to that.

It's tedious, of course. Sixty circles on each neck gland. (Do you know how many glands there are in your neck?) Sixty circles under my right arm. Sixty sweeps from left to right armpit.  Sixty on the groin. Sixty sweeping down my side. And so on, ad infinitum.

Scar massage. Arm extensions. Neck bends. Rock the cradle.

45 minutes later, I'm still going.

This isn't what my morning's meant to look like.

But the new routine isn't something I can change without dire consequences, so I suck it up. Raise arms to the front. Raise arms to the side. Do the hokey pokey and a-turn about. Don't complain, just do it. Count your blessings.

The physio is a delight; imagine walking inside from a drab, cloudy day into a room full of honey-warm sunshine, and that's what it's like driving through Goonellabah and going in to see Gaby. For once an appointment seems like a luxury, not a trial.

She works out straight away why my arm's been hurting more, not less. Massage the harder lines along the underside, these tight cords that stop you getting that left arm vertical. The lymph has gathered a little there and hardened, and has to be moved away.

Fuck, that hurts.

We spend a lot of time laughing.

"Dr Mumbles isn't usually like that," she offers with a twinkle, when I mention my oncologist's unwillingness to engage with anything but his knee. "He's on a diet. Oh god, don't tell him I told you that."

Hey, everyone knows everyone up here.

She offers me a jellybean on the way out, with a mischievous smile. And that's what it's all about.


Taking myself to my physio session was beyond wonderful. I miss my freedom; I miss being able to get up and go where I want, when I want. People are being truly amazing, and sometimes- a lot of the time- I know I need help; but lord, how I loathe being dependent.

I bought lots of things I needed as I wandered around town afterwards, rejoicing in not being answerable to anyone at all. Two beautiful lengths of silk to make scarves for my head. Soft netting to make prosthesis pockets in my bras. Lunch at Cafe Cappell, where Nessun Dorma was already soaring out the door when I arrived, because I realised I was running out of spoons and needed to eat.

Round two. A new handbag with a soft strap; anything tight or hard on my body is out, even if it's not on my arm. A better quality nail varnish. Bits and bobs to try making a wig, even though I've bought a proper real-hair one; I can't bear the thought of throwing my hair away, or watching it go down the drain. Two new front tyres, before I get pinged for having one that's as bald as- oh, never mind.

"I have breast cancer," I explained to the shop assistant in Priceline as I requested the next thing on my list, an aluminium-free deodorant. A small, nervous older woman, she was. Teddibly anxious to please.

"Why do you need that for cancer?" she asked me then, dropping the fawning act and meeting my eyes.

I explained how the aluminium enters the body to clog the pores; not a great idea in an already-compromised armpit. Her eyes widened.

"Perhaps I'd better get some. I've had breast cancer too."

And suddenly we were having a conversation instead of a transaction.


I got home to find my request for a sickness allowance from Centrelink had been approved. That was a relief. All this Freeloader-driven retail therapy will have to be paid for some day, and I wasn't quite sure where the money would be coming from.

The passage to that allowance was remarkably pain-free, given Centrelink's well-deserved reputation for cutting down forests and driving the poverty-stricken to drink without actually giving any money to the people who really need it. Only one major glitch on this occasion; I'd received yet another letter from them to go with the fourteen or fifteen already in the file (oops, there goes another tree) which informed me that your application had been refused as you have not submitted the requested paperwork.

Given that Jools and I had sat in Centrelink with the appropriate service person, who'd filled in the paperwork for us to make sure it was correct and then submitted it in the office, this seemed unlikely. I'd been forced to make an indignant phone call (read, sit on hold or talking to a computer for an hour) to object, and was finally put through to my case officer after screaming consultant! into the mouthpiece enough times and explaining the situation to the poor frazzled woman on the other end, who'd doubtless been yelled at all day.

The case officer spent some time working up some more objections, after the original one fell down like loose trousers to the lino.

"Your property is very large. That's an asset which will need to be assessed."

"It's rural residential," I explained. "It's all rainforest gullies that flood except for the front five acres, and we don't even have road access to the back of it- you can't use it for anything."

Not to be deterred, he tried again. "You've valued your property at x thousand dollars here, but then you say the house is worth y thousand dollars."

Or something. He was talking Swahili as far as I was concerned. Mention economics to me, and watch my eyes cloud over as I go into a coma.

My irritation crumbled into despair, which is probably the best thing that could have happened.

"I'm not a valuer," I said, my voice crackling with about-to-be-shed tears. "I don't know how to do that stuff. I'm just a woman with cancer."

He shut up then, and started being helpful.


Today I've hemmed up those lengths of silk and tried tying them round my head in different ways. Some of them looked striking, but none of them looked like me. When I started feeling miserable I walked away from the mirror, because wailing won't make the hair stay in my head.

I started pinning the lace to the little hat base I found that fitted me perfectly, ready to make the base of my home-made wig. I cleaned the chipped varnish off my nails, ready to apply the better stuff. I worked out what shape the material needs to be to keep my tubby teddy in my bra, and where to leave a hole to get it in and out.

I'm just a woman with cancer, sitting here sewing prosthesis pockets into her bras. I'm just a woman who is suddenly less worried about whether her bum looks big in this, and more worried about whether her prosthesis will fly out of her cleavage like a Jack-in-the-box at some inopportune moment. (Is there an opportune moment for flying prostheses? Discuss.)

I'm just a woman trying to make the best of a bad job, working out what I can change and what I can't, trying to have the wisdom to know the difference, failing now and then. Trying not to howl at the moon.

My hair will grow again. My hair will grow again. My hair will grow again.


  1. Hello again, I to have gone in for a bit, well a lot of retail therapy mostly on these sites… Stunning sunglasses dramatically change the look of even the most spectacular chemo scarf. I had only ever gone for cheapies until I came across $250 Italian sunglasses for $39 on one of the above sites. I got 5 pairs of absolute stunners!! I have never had a problem with any of these sites and have bought lots of things including all my Christmas presents. Only thing is, delivery is quite long. I am now half way through my six treatments (3 x FEC 100 and about to start 3 x Docetaxel) and am so glad I didn’t shave all my hair off. When it started malting about day 14 after first treatment I cut it ½ to 1 inch and left my beloved fringe. Haven’t lost any more hair than what went west between the first and second treatments, however it is extremely thin but enough to poke out under hats. If I had my go again I would have left it a bit longer…about 1 1/2 inches. That is not to say the remaining 3 treatments won’t wipe it out. Malted a fair bit around the house, nothing the vac couldn’t handle. Didn’t know about the aluminium antipong. On the shopping list. Don’t spend too much time worrying about side effects that may never happen. I was prepared, with spew bags but haven’t been sick or nauseated at all, just queer in the head, sore mouth and lacking stamina. My surgeon noticed my look of defiance when she mentioned I may even gain weight on chemo. Never will I succumb to gaining weight, either on chemo or hormone therapy. Am being ultra cautious about what goes in my mouth…….no meat, dairy or sugar. I saw you mentioned deleting diary and sugar in a previous post. We farmers are hardy, resilient, determined and are masters at improvising. These stinking Freeloaders are in for one damned hard time!!!!!!

    1. They are indeed, Ann!

      Sunglasses- what a great idea. I am big on stunning earrings too- always have been. Sadly I will certainly lose my hair, as I'm getting the TAC treatment- all three big guns together.

      And I'm TRYING not to think about things that may not happen...

      ...great to have a fellow-farmer following!