Tuesday, June 11, 2013

Lemmings and wild horses

I've got it. I've finally worked out what all those people in the radiotherapy waiting room reminded me of.


Pale-blue-gowned lemmings, sitting in blank-faced silence till their name was called. Then trotting meekly one by one into the industrial-strength-bunker-disguised-as-treatment-room, where they'd agreed to lie splayed and alone amidst the unnerving clanks and whines and whirrs of the terrifying machinery, being nuked to within an inch of their life.

I couldn't sit in that waiting room, you know. It wasn't working for me. I couldn't sit there like a lemming waiting my turn to go over the cliff. My brain is way too busy for that, too full of what if's and why's and how's. I had to find a way to disengage from what was happening before I got anywhere near the Kraken.


That's where the wild horses come in. There was this jigsaw puzzle set out in the lounge across from the waiting room; the box showed a painted woodland scene. Wild horses galloped through it, hooves akimbo, manes flying. Dappled greys, chestnuts and blacks, rejoicing in their freedom.

When I first noticed it, only the frame was done. Edges are always the easiest. Someone had started piecing together some bits of horse leg, but otherwise it was a thousand pieces of chaos waiting for someone to take charge.

Did somebody call my name?


Five weeks later, I walked out of there for the last time without a backward glance at the puzzle that had served me so well. The nurses always knew where to find me after the first few days; I'd be sitting on the floor in the lounge, scanning the chaos for that tiny black bump to complete a hoof or that white flick of mane that was eluding me.

It was another meditation of sorts, I suppose. The calm required to search a thousand pieces for the exact piece needed. The quiet rotation of each puzzling fragment, until that eureka moment where my brain recognised where the fragment fitted in the whole scheme of things. The return to the calm search.

I'm good at jigsaws. Excellent spacial relations, said my vocational guidance report, after my mother took me to be IQ tested at age 5. And an unnatural serve of patience.

My aunt was good at them too- cousin Nancy's mother; people were always shipping off their old puzzles to her, and every time I visited there'd be a half-completed picture laid out in the living room and a stack of puzzles waiting in the corner. So many calming echoes were captured in those fragments of horses, as I turned them and matched them and smiled quietly to myself.

By yesterday, my 25th and final session, the wild horses were all complete; that's all that mattered to me. Bugger the background. The horses could run away now they were finished, and so could I.

I'm no lemming. Don't ask me to queue to be nuked. I was me all the way to the Kraken's lair.


The Bear isn't good with waiting rooms, either. He took to dropping me at the door when it was his turn to drive me in, or parking and then going wandering in the park down the road. If he came back before I emerged from the bunker he'd sit in the little outdoor eating area, tapping his feet to dispel some of the tension. Right to the end, he expected me to burn to a crisp, or have a heart attack on the table, or some such disaster.

That's his cancer experience: disaster. Overwriting it is hard work, slow work. It tries my patience over and over.

"I'm fine," I've said again and again, showing him the barely-reddened skin where the nuclear fallout has entered my chest; but his eyes see it differently. Invariably, he winces and goes to pick another aloe vera leaf to soothe my skin.

He sleeps a lot. I think that's how he handles fear, depression, exhaustion: just lie down and sleep, and it all goes away for a while. I've never known anyone to fall asleep so quickly, no matter what emotional chaos surrounds them. He mutters goodnight, and he's gone.

I should be so lucky.


My sleep was so screwed up by last week that I consulted Dr Google. I found that my deep desire to crash out every afternoon was completely normal; mind-numbing fatigue usually sets in a few hours after the treatment. And of course, that messes up one's sleep patterns at night. All through rads, I'd lie down around 11pm thinking I was tired again now; hours later, my eyelids would be drooping but my body refusing to let go.

And then, of course, it did require wild horses to get me out of bed the next day after I'd finally crashed out in the wee small hours. I'd think of the puzzle waiting for me, sip the tepid green tea the Bear had brought me half an hour ago, drag myself up and set up the Wii.

Bloody Librans. I need a pre-ordained schedule, or I spend all day unsuccessfully trying to decide what to do first. If I had to think about what exercise to do today and when, I'd never do it at all. Much better to just get up on autopilot and click the same series of buttons every day.

What's that Jools said to me? Don't waste time thinking about whether you want to do it- just DO IT.

Wise words, especially for me. I loathe exercise.


So the wild horses have dragged me, finally, to the end of my formal treatment regime. It's another lemming moment, you know- just like the end of chemotherapy. They trot you forward through the treatment, one foot after the other, and then push you off the cliff at the end.

You're done! Bye! 

I guess they assume because you're thrilled to get out of there with your life, you're going to be fine with the emotional fallout from being poisoned or burned alive. And it's not their job to deal with the lifelong uncertainty that awaits every cancer survivor, is it?

Is it?

Anyway, nobody with a medical degree has mentioned any of that tricky stuff to me at the end of their part of the programme, let alone asked me the really pertinent questions about life after cancer and helped me to answer them.

Do you lie awake worrying about whether it's coming back? 

Do you wonder whether the whole treatment was a waste of time? 

Do you want to know how, and how often, we check whether this worked or not? 

Would you like to know how soon you can expect to go back to work or resume your normal life?

I guess they think that's what social workers are for. But I want my answers from someone with the science of my cancer behind them. I don't want fairy-floss reassurances and one-size-fits-all platitudes. I don't need to talk it over and let it out. I do that with my friends and my partner. That helps, sure, but it doesn't answer the 3am questions. I want to know about the science of my illness, and how it fits in with the truth of my life and the reality of my emotional state.

The best answers I've found were passed on to me by my dear Lyn, who hasn't let the fact that she's got weeks to live stop her from helping everyone else around her if she can. Of course, this essay doesn't answer my personal questions about my personal case, but at least it was written by a doctor- and at least it doesn't pretend that finishing the poisoning and burning and mucking-with-the-hormones is the shining Nirvana at the end of the 'cancer journey' for the patient.

Here's a link to the essay.


The rads nurse, checking out my skin before I made a break for freedom, raised her eyebrows in surprise.

"That's one of the best skin responses I've ever seen," she enthused.

Never mind that over the long weekend before my final treatment, the skin over the lymph nodes at the base of my neck had raised the red flag and screamed enough; she gave me some more cortisone patches for the reactive rash, asked me the usual list of questions culminating in the third "So how are you going to celebrate?" I'd fielded that day (actually, dear, I don't feel like celebrating right now unless it's a pillow-and-doona party in front of a log fire), and sent me off to see Professor Power Ranger for the ultimate approval to gallop home.

Sadly, Prof P-R was running catastrophically behind schedule. I say sadly, because my Bear is no more a lemming than I am. He Doesn't Do Waiting, He Doesn't Do Queues, and he most certainly Doesn't Wait In Line To Jump Off Cliffs. He started swearing from the moment he arrived back from his walk in the park, expecting me to be ready to leave, only to find me morosely flipping through a tacky magazine outside the doctors' rooms.

What is it with waiting room magazines? I should have binned the lot of them and done my fellow-sufferers a favour. Nasty, trashy, screaming-celebrity-gossip rags that they are, and all months out of date. Worse still, given the number of waiting rooms I've inhabited for hours on end over the last eight months, I'VE READ EVERY SINGLE ONE BEFORE.

But I digress.

The receptionist must have extra-sensory hearing, or maybe the Bear's growling was louder than I realised. Eventually, knowing that the doctor wasn't going to be available any time soon, she suggested we go have lunch and come back later.

"McDonalds or the Square food hall?" I asked, thinking of speed-of-service and ability-to-park rather than edibility-of-product. (When will I learn.)

But the Bear had better things in mind. Seated on the pavement at the Mecca cafe after a parking space opened up miraculously at the door, we watched the world go by in all its colourful Northern Rivers glory and feasted on generous and delicious burgers that shat all over McDonalds' (even if they did cost twice as much). I mused over the change chemo has wrought in me as I gave the last quarter of my fishburger to the Bear to finish; recognising that I'm full never used to be a strong point, particularly where seafood is concerned.

The excellent food seemed to calm the raging beast in the Bear's restless soul, though on reflection, it may have had more to do with the Crown Lager that accompanied it. By the time we headed back to the radiotherapy unit, the professor was ready to see me and the Bear was far less dangerous. I chained him to a chair in the waiting room, not wishing to stir the sleeping giant by inviting him in to yet another medical consult.


The professor was all apologies for the extended wait and, like Dr Mellow, seemed pleasantly surprised that I'd survived the whole course of treatment without the need for intervention or lowering of the dose.

It seems I'm one tough old turkey, and it seems they've all thrown the book at the Freeloader. Which is exactly what I asked them to do, isn't it?

When I asked for more information about what they'd actually done to me over the last five weeks, the prof called up some pretty pictures on his screen and showed me the hot spots that they'd nuked (correlating nicely with my real-life skin irritations) and the angles and focus strategies they'd had to adopt to avoid zapping my heart. This explained the use of a weird extension that had been placed on the face of the Kraken before my chest got a direct blast; to avoid missing one spot, they'd had to go head-on without going deep. I guess the extension bent the rays somehow, so they didn't get as far as my heart.

You'd want to be good at maths to work in that department, I'm telling you. It's all angles and measurements and plusses and minuses. It's all numbers, blended with a code of bizarre non-words flying over your head as you lie there immobile.

7 point 4 inf, one girl would state. That's minus seven point 2, the other would reply as she stamped on pedals and clicked the gurney sideways (and I'd feel like saying no it's not, unless I've somehow found myself in Wonderland).

Nine centimetres soup, the first would continue. WTF? my head would reply. Oh, 'sup' not 'soup'. Superior, I suppose.

MLC 100, the first went on, and my head said that's a building in Sydney the last time I looked.

And so on.

No wonder I felt the need to go into a trance.

But back to the Power Ranger's office. He drew me a little graph of nuked-cancer-cells versus nuked-normal-cells, which closely resembled the one Margaret had drawn for me at the beginning of chemo. Eventually, he explained, the nuked cancer cells become so disabled that the body can deal with them on its own, whereas the normal cells recover more quickly and never get to critical level.

In the best of all possible worlds, one might add. And fortunately for me, it seems that my body was playing nicely, if my skin's anything to go by.

Good body. Well done, body. Hope you enjoyed your fishburger, Ferdi.

He did.


And so, moving on. It's back to Dr Mellow in two weeks, who'll prescribe Arimidex to bind to any oestrogen floating around my system and stop the Freeloader feasting on it. Sadly, it'll probably also turn me into the Bitch From Hell for the second time in my life, as I get to experience an encore performance of Menopause, the Musical.

(Come on, everyone- a few rounds of The Bitch is Back, followed by one more chorus of I Will Survive...)

Meanwhile Dr Goodguy gets the joy of sending me for ultrasounds every three months or so, to check whether the Freeloader's miraculously survived the fire and brimstone and is growing back in the same place.

Well, not quite the same place. Presumably his original residence is now sitting in a jar of formalin somewhere, with a startled look on its face. But they check the armpit, the remaining lymph nodes that couldn't be removed in surgery, and the chest wall. The prof says the tumour is much more likely to grow back in exactly the same place than anywhere else in my body; that's kind of a relief, after too many of my Facebook BC-suffering friends finding out they had a little surprise waiting inside their skull after they thought their ordeal was over. (Yes, two is too many.) Some forms of tumour, it seems, tend to metastasise in preordained spots.

At least I know what to watch as a first preference, and it's not the inside of my head.

There'll be trips to the chemo suite to get my port-a-cath flushed; there'll be visits to Miss Sunshine to get my arm's lymph status checked. And eventually, there'll be more surgery- maybe my ovaries will take a hike, or maybe I'll talk them into whipping the lot out, given that gynaecological cancers seem to have little hesitation in popping up in related organs (and I'm on my second dodgy smear test already). Hopefully, eventually there'll be some construction work on the demolition site and I'll be able to put a 'c' back in front of my leavage.

But compared to the last eight months, my life will be more my own. This Libran will be able to schedule a few non-Freeloader-related activities around the daily sessions on the Wii, the arm massages, the catnaps and so forth.

Am I excited about that? Sometimes. It was exciting, for instance, to be able to plan to paint the window frames of the treehouse over three days, knowing my energy wouldn't be sapped any more by the daily trips to town.

(Even more exciting to actually achieve it.)

Stop laughing. I know, I know, I should get out more, and not just to visit another waiting room and whine about the crap reading material.

But mostly, I'm too tired to be enthusiastic about anything. It'll take months or years to shake the exhaustion, I'm told. I still have a hangover of tiredness from the chemo, with the radiation's grand pianos hung over the top. And then there's the hormone therapy and its glorious side effects to cope with- hot flushes and crawling, jumpy legs in the middle of the night... sometimes I wonder if I'll ever get my sleep patterns back.

So still, it'll be one day at a time, one hour at a time, until my body finds a comfortable rhythm again. Till then, I'll just be dragging myself up in the morning and going through my exercises on the Wii, then assessing how I feel and what I'm up to doing. I'll be needing the wild horses a while yet to get me going.

But the lemming days of treatment are over. And hopefully, I'm not heading for a cliff any time soon.


  1. I LOL'd at your description of Libran folks.. as I am one too and suffer the exact same quandary...

    On the upside... I am very happy to hear all of your news.

    1. :D

      Thanks, Annabel. We Librans have to stick together, if we can only decide on what sort of gaffer tape to use...