Wednesday, January 9, 2013

One step forward, two steps back

The New Year has cranked into gear. Suddenly the Christmas bonhomie haze has evaporated into reality, and everyone has a battle to fight- new resolutions, new jobs, new locations, bills to pay, holiday kilos to lose, bad habits to slough.

You'd better get with the program, folks, or you'll be left behind. Lift that barge, tote that bale.

All around me, I feel people moving on. It's like watching trains leave the station. And I wish my friends well as they move smoothly forwards into their hungry, all-consuming worlds- I really do. I hope they find what they're looking for. I hope they find their better selves, if that's what they seek.

But it's lonely back here at Cancer Central Station. I am, without a doubt, going nowhere, being helplessly shunted back into Chemo Siding. There I must rattle around in the same blank carriage, propelling myself pointlessly up and down its tiresome corridors for the next four months.

One treatment forward, two symptoms back. After a while, the scenery all looks the same. You tire of even talking about it.


Cycle Two has been better, and Cycle Two has been worse. If I was to choose between Cycles One and Two for most bearable I'd have to toss a coin. Sad, but true.

The bone pain seems under control this time round, thanks to Dr Rosie's brilliant lateral thinking. I did try out Dr Mellow's pre-emptive method, the two-hourly alternation of Panadol and Neurofen on Day 4, but the point came where I was literally going to throw up if I ingested a single tablet more- so I stopped. I am, still, trying to listen to my body, and when my instinct screams stop taking that shit before it rips the rest of the lining off your guts I feel it's worth paying attention.

So I put my faith in the calcium supplements, plus lashings of extra calcium in my diet, plus a slow-release narcotic during the night, and it seemed to work. A couple of mornings I woke with aching joints, took some Neurofen and more calcium, went back to bed till the pain dissipated... and came out of it by mid-morning just fine. So we'll call that success.

One step forward.

Ferdinand, however, is another matter. Poor fellow. Several times I've wondered if I should have called the priest. From the second day of this cycle he's been slumped at the bottom of my stomach, motionless and bloated, responding to none of his usual stimuli. Where I used to see him lolling slimily in the depths, his greenish-orange scales glinting now and then when I pleased him with some morsel, he now presents to my imagination as a taut white zeppelin- blind, banded in steel, and leaking deadly fumes.

Lye, perhaps. Bubbles of lye, that surface on my tongue and eat away my taste buds till all I can sense is metal and acid. Eating is a trial now, not an experiment. Success means taking enough tasteless bites to sustain me for a while before the pain recommences, the endless hiccups, the vile acrid burping.

For a dedicated cook and foodie, this is torment indeed. My whole day used to revolve around the cycle of meals, culminating in the joy of creating something delightful in the evening. Well, goodbye to all that, because nothing is delightful any more. Food has been reduced to fuel.

Some fuel hurts more than others, is all. If I lie very flat and straight, it hurts less. For a while.

Don't move, Ferdie. Wait and I'll get you some custard, as soon as the agony relents.

Two steps back.


I am weaker, too. I missed three days of biking, simply because I couldn't stand up straight for long enough, and when I finally climbed on this morning to try again I actually managed to fall over the bike when I tried to open the front gate.

It hurt.

I suppose I could have given up then, but the stubbornness kicked in and I straightened the handlebars with a well-aimed kick to the wheel, walked the goddamned contraption down onto the road and stamped crossly on the bloody pedals till it went forward.

Well, sideways, and sideways, and forward.

And back and forth.



And... forward.

I got there in the end.

There was no rhythm about it, and my legs were screaming, but I made it to Eagle Bend and back before the day heated up too outrageously. Did I mention the weather? Perhaps I won't mention the weather, other than to say it seems to have been devised by the devil to torment me. 42 degrees Celsius is not conducive to feeling comfortable at the best of times, let alone when you've been systematically poisoned.

Let's just say... it's nice weather for swimming.


By yesterday morning I was in a right old funk. I had the miseries but bad, the weather was impossible, my stomach was killing me and my concentration was at an all-time low. I was bored stiff, in pain, hot and cranky.

I keep trying to remember that this is the worst bit, the speed hump that was always going to happen right now. But it seems endless, and while I'm lying flattened on the road I have trouble believing that it will improve in a few days.

Seeing my misery, the Bear suggested that maybe I should skip my appointment at the GP where I was supposed to be signing off on my care plan. Making a decision about that proved to be harder than just getting in the car. I'm not good with decisions, even when I'm well. Just point me where I'm meant to go, okay? So off we went, along the bumpy dirt road that played merry hell with my poor screaming innards, sweating profusely despite the air con cranking full tilt.

"This had better be worth it," muttered the Bear crossly.

Nobody can be in a good mood in this weather. It's physically impossible.

I'd had high hopes about the care plan, after spending all that time setting it up. I thought I might end up with a document that was a faithful representation of what was happening to me, something that I could look at and use to keep my mind focussed on the different stages of each cycle and what I need to do to cope.

Silly me.

Instead, I found myself sitting in the practice nurse's office staring at a joke. Imagine if you dictated Hamlet to a monkey with a typewriter, and then got a cast of parakeets to read it back live on stage. Okay? Now, audience: tell me what the plot was about.

Are you with me?

And I was too sick to be angry while I was in there. That was the most maddening thing. Instead I found myself taking the line of least resistance, nodding my head stupidly instead of shouting at the idiot woman who'd turned all my hard work into two pages of drivel and either lost- lost- or discarded the six pages of notes we'd made together that contained all my vital information.

This is what chemo does to you. You have to take the easiest path, because you have nothing in the tank. I wanted to kill her then and there, yet I found myself being cheerfully polite.

And she, stupid woman, had the hide to be giggling, ignoring me completely when she got carried away on a roll of her own brilliant advice, diverting the conversation into directions that suited her own agenda, completely oblivious to my physical and mental discomfort. Have I ever met such an inappropriate person taking a pseudo-medical role? I doubt it. I don't think it's just my chemo-fuelled irritation. I think she was seriously out of her intellectual depth and didn't even know it, and you can add insensitive as a side order with that.

In retrospect, I could see a grim humour in the way our interview progressed. In its complete disregard for sanity, it resembled nothing so much as a skit from Monty Python's Meaning of Life.

"Ginger ale helps," I'd say in response to another stupid question about my food preferences (didn't we do this last week? Wasn't this meant to be finished?), burping yet again.

"Oh, ginger beer, yes, that'd be good! Or just ginger, did you try just ginger?"

"Not ginger beer. Ginger ale. It's not as strong. And straight ginger didn't work at all," I'd insist.

"Ginger beer and ginger," she'd type into the half-empty box of her supposedly-already-completed care plan. And spend the next few minutes in her own little world whilst playing with the bullet points so they were neatly aligned at the beginning of each line of the box.

  • Regardless of 
  • the 
  • content.

"I've got a friend," she started up at one point a propos of nothing, "well not really a friend, more an acquaintance, just one of a big group of people I know, but you know, she's having chemo and I want her to know I'm thinking about her, you know, so what could I take her to eat that'd be good? Will I take her some Magnums?"

And my brain would be saying die in a hole, do you think we're at a picnic here and why the fuck are you asking me for advice?, but my lips would somehow form other words.

"Not Magnums," I'd whisper, "your gums hurt terribly, so anything hard is bad. It's better to just have soft ice cream."

"But what about that Ice Magic stuff?" she'd continue, pursuing the thought relentlessly as a stoat seeking a helpless baby rabbit and click-clicking away at the formatting. "That's not as hard, it sets but it doesn't go rock hard. You could use that."

"You don't want anything hard," I'd mutter again, as she made a note of Ice Magic.

  • With a bullet point.

We've come for your liver.

But I haven't finished with it yet.


When I found myself almost retching as I tried to explain that Weiss Bars needed a double s but still wouldn't be found in her spell checker because hello, it was a brand name, I finally reached the land beyond good manners. Something must have changed in my eyes, because she glanced at me and suggested post-haste that she'd finish the care plan herself (wasn't that why I'm here today, because you finished it, you hopeless drop kick?). Perhaps I needed to go home now if I didn't feel well?

You stupid fucking woman, I told you when you tried to make this appointment that I wasn't going to feel well at this stage in my cycle. You weren't listening then and you're not listening now.

Nothing like that came out of my mouth, of course. My rage was entirely subterranean. Old habits die hard. I'm a well-brought up young lady, you fuckwit. And now I am poisoned to boot, and you don't seem to have any concept of what that means. Is it even legal to be that stupid?

I got out of there, stumbled into the loo, sat there shaking and moaning till I could walk straight again.

Stood outside in the heat waiting for my lift, because if I'd spent another second inside I would have shouted at someone. And everyone else in there is perfectly wonderful. It wouldn't be fair.


"Well THAT was a waste of time," I said to the Bear in disgust, as I fell back in the car.

And then, to the background melody of the Bear exploding, I started formulating a letter to the practice in my head explaining exactly why I thought this person was completely inappropriate for the job she'd been allocated. Remembering, in particular, how she'd given me another patient's old notes to write on last time as 'scrap paper'.

"Don't turn them over," she'd chortled, as she left the room to attend to someone else.

Lady, you are so for the high jump.


Anger, when I finally allowed it to surface, seemed to be quite a good remedy for my sick stomach and fuzzy head. It cleared away the cobwebs, because I finally had something useful to do. The feeling of uselessness is one that I battle constantly, after having been a terminally useful person all my life; sometimes I lie here wondering why on earth I'm bothering even breathing, because I have nothing to offer to the world right now. And offering myself to the world has always been how I define myself.

But Little Miss Dumbo fixed that, at least temporarily. I figured if I could save even one other sick person in our local area from having to endure that sort of crap at a time when they felt like death warmed up to start with, my poor little fractured life was not in vain. And so, over the course of the next three hours- much longer than it would usually take me, I might add- I wrote a typically articulate two-page letter to the practice. It fell well short of recommending the firing squad, but dropped the offender squarely in her own cesspit of unprofessional conduct.

After all, if nobody ever complains, how would anyone ever know there was a problem? Maybe she's been tormenting people like this for years. A little gentle enquiry amongst my friends revealed that none of them have the time of day for this particular clown, which was news to me. You never know till you speak up.

Looking back over the letter hours later, I felt huge relief- not just because I'd dealt with the situation that was upsetting me, but because it seemed quite a well-constructed and soundly argued missive. I could still pull out the stops when I had to. My lassitude was more state of mind than incapacity, and that could only be good news.


With my sanity somewhat restored, I fell in the dam to try to drop my body temperature back down to saute. The weather had been so extreme over the last few days that half the state of NSW was in danger of going up in flames, and I tried to feel grateful that I was able to submerge myself in cool water instead of running the gauntlet of some catastrophic wildfire.

It helped. I paddled over to the far side, where a baby wallaby was drinking, and talked quietly to it for a while. The local marsupials have learned that we won't hurt them, and as long as we stay submerged they're happy to share our waterhole with us. It made me forget my aching gut for a while, just sitting there in the depths hanging off my pair of pool noodles and chilling out with Skippy. I even managed a few gentle lengths, trying to kid myself that it counted as exercise.

There's another rod for my back, of course. I feel like a failure for missing three days of exercise in a row. Yes, yes, I know it's stupid, and I know I have to listen to my body and be reasonable and all that stuff. But there's some knee-jerk response in me that insists that if I stop for any reason once I've decided to do something, I'm a quitter.

You can scream at me as much as you like. I know it's stupid. But it just is. Logic doesn't get a guernsey. I set myself a stupidly high standard, and then get disappointed in myself when I don't keep up a perfect record. Even when I have fucking cancer.

Wow, am I good at beating myself up. The best.

Anyway, it was beautiful in the dam as the afternoon started to close in. There was one magic moment as I lay floating under the overhang of the apple gum and saw a swish of movement above my head; our azure kingfisher, a most shy and elusive bird, had either failed to notice me lying there or had decided I wasn't a threat. He sat bobbing over me for about five minutes in the branches, pushing his orange chest out as he contemplated where to dive, before sailing forth to the next billabong.

Photo by my brother Jeff, on another day. Spectacular little bird, eh?

A magic moment. That's what we call it, the Bear and I- that moment when you are lucky enough to be in the right place at the right time, and see something completely out of the ordinary that you could never schedule in a million years. I still have the odd magic moment to hang on to, even though everyone else's trains are blowing their whistles and heading off to exciting new destinations.

I have to be patient. One step forward.

Don't even look at the steps back. Don't count them. Look for the magic moments instead of envying others their normality. Lord knows that out there in the real world, magic moments are few and far between.

You aren't useless. You can still do things when you care enough.

One step forward.


  1. Oh Candy. I feel your pain. I'm not moving on. I'm right here. I wish I could do or say something to make it better. I understand your rage. Just hang on to that cliff. I'm not going to offer any false hope, but your life is not fractured and meaningless. You are an inspiration, and a wonder. You can beat this fucking disease, and you are making a difference with your writing and your honesty. You have no idea who you are reaching and inspiring and making a difference for- me for one, even though our battles are very different. I love you. I am right here. I am so sorry this week sucked so much. Just hang on, and hang in, and know you ARE being heard, and you are not alone.

    1. Somehow I think you might be backed into the next siding, Lisa!! We are both rather stuck at present, methinks. Thank you for the words of kindness and understanding. It helps.

  2. So glad it has cooled off today,hope it gives some reprieve.XOXO

    1. I feel like a new woman, Sharyn :) ... even managed a trip to the shops by myself!