Doctors, gods and proselytisers

I'm starting to see a pattern to this.

Day One of the chemo treatment, and I'm feeling like King Kong at the top of the building. Look at me! This doesn't hurt (much)! I am invincible! (I think I'll write a Really Positive blog post about that!)

Day Two, and I have both feet on the physical and emotional slippery dip, because damn it, it DOES start to hurt and I DO start to feel like crap and NOBODY would wish this shit on their worst enemy, and I know it's only going to get worse for the next six or seven days, and then I have to do this HOW MANY more times FFS?

Somewhere along the way, I'll need to write about how shockingly miserable I feel, how endless the tunnel seems, what hideous side effects I've discovered this time round. Sorry. Look the other way. There's nothing much you can do to help; I just have to endure it somehow, and remember that it'll end.

Well, yeah, you could remind me of that.

I hit Day Nine, and wake up feeling strangely energised. Maybe I'm not dying after all. Maybe I can actually chose a task and complete it today. Maybe the bottomless pit of misery was only temporary after all.

Euphoria! I run around like a crazy thing for about five days, posting Facebook statuses telling my poor long-suffering friends how many mundane daily chores Superwoman has managed to complete while hideously poisoned.

And then I crash and am completely exhausted for a few more days, and then I remember to take it easy for the next week regardless of how capable and full of energy I feel first thing in the morning, and then...

...and then it starts all over again.

If only I could level it out a bit- pad the troughs so I don't fall so hard, level off the highs so I don't wear myself out. If only I was a less emotional person, less prone to taking things to heart, less easily delighted by small gains.

It ain't gonna happen.

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

The Jehovah's Witnesses who arrived at my door on Day 15 spiked up my newly-discovered ability to be less than polite, which could have been quite dangerous in someone as emotional as me. Honestly, sometimes respect and courtesy are overrated, especially if you've been brought up to let people walk all over you because you're so terrified of appearing rude.

It was a shock that they were there at all. I guess they must really think they have something important to say if they're prepared to drive into the middle of nowhere and come down dirt driveways with no idea of the reception awaiting them at the end; out here, it's quite likely to be the business end of a shotgun.

But here they most certainly were, all teeth and pamphlets. And after a few days of burning more energy than I had in the bank, I was completely exhausted.

"How are you?" was probably not the smartest opener, given my circumstances. (Not that they were to know that.)

"Having chemotherapy," I responded cooly. (Think of hitting the fast-freeze button on a body-sized chest freezer, and you're approaching the welcoming warmth in my manner.) "Please leave."

And they did, at once- turned tail and fled- which was just as well, because I immediately found myself livid again, with a fury that rivalled my doomed encounter with the practice nurse. How dare they bring their simplistic, bigoted view of the world all the way onto my private property? What right did they think they had to do that? What good did they think it would do? I almost wished them back again, so I could give them a piece of my mind.

And I scorned them for their rapid retreat. Clearly they had no simple solutions to cancer, and didn't have the balls to engage about it. The word 'chemotherapy' was enough to send them scurrying wordlessly back to their car, their childishly-illustrated Watchtower undelivered.

Or perhaps it was my Gollum-head that scared them off.

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

That poor old Gollum-head is particularly unsavoury at the moment, scarlet-spotted and terribly itchy, and a few days ago had sent me scuttling back to Dr Rosie in search of more trough-padding.

"Your follicles are infected," she noted. "Hats are notorious for this," she added with a nod to the turned-up black number I'd been sporting on my inflamed and measle-daubed skull when I came in, and gave me a script for antibiotics along with some sage advice about washing and sun-drying everything that had come in contact with my head.

Damn. It never occurred to me to wash the old hats I'd dragged out of the back of the cupboard before putting them in contact with my poor sensitive scalp. So much to think about that I've never had to consider before... you just can't get your head around everything, no matter how fast you scramble to absorb information.

Bless Dr Rosie; she was ever so patient with my shopping list of problems, which included delivery of my letter of complaint about the practice nurse. That was received with infinite grace and complete understanding of my perspective. It's what I've come to expect from my GP, and for that grace and understanding I am infinitely grateful.

"I will deal with that," she said firmly, and I absolutely believed that she would.

She listened to my wails about poor Ferdinand the Zeppelin, too, and prescribed a soothing drug to reduce the acidity levels in his tank.

"But try Mylanta first," she added. "The less extra drugs you put in there, the better."

My thoughts precisely.

Then there was the hideous outbreak of sores in what I shall simply call a very uncomfortable location around Day Nine each time. Once you have one of those nasty, permanent viruses in your system- the ones that lurk after the first time you catch them, and come back whenever you get stressed or your immune system gets low- it's yours for life, and the little bastard will take full advantage while your white cell count's down. Rosie dashed off another script, and I gave thanks yet again- this time to the Gods of the Safety Net, because there will, eventually, be a time when the Government calls 'enough' and stops making me pay full counter price for all this medicine.

It's such an expensive disease. I mean, I went and ordered my prosthesis the other day- yes, the time has come when Tubby Teddy can be retired and replaced by the Feels-Like-A-Real-Tit, coolant-pad-backed 'real thing'- and it was the closest I've come to fainting during chemo when the sales assistant told me the price.

Four hundred and forty quid for a replacement tit. Four hundred and forty smackeroos for a flesh-coloured lump of shaped silicone to go in my bra. It seems ridiculous, especially when you consider the statistics. Even if only half of the one-in-eight women destined to get breast cancer in their lifetime ends up having a mastectomy, that's a hell of a lot of lumps of silicone they're making. Say, less than that- even one for every thirty two women... that's quite a market.

I must remember not to stoop to logic. There's no logic to cancer, and even less to medical price tags.

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

Logic might have led me to believe, right at the beginning of this story, that my disease had hard edges to it and that the steps I had to take would be pre-determined. You have cancer? You go to the doctor, and get sent to other doctors, and they have clear and correct answers to every question you ask (and even to the ones you'd never think to ask), because they've had all that training, haven't they? And so they make the right decisions for you, and you get the right treatment from them, and you get better- or at the very least, you have a delayed and relatively comfortable death.

What a load of bollocks that is. That's nothing more than simplistic popular mythology, and it rates right up there with the naiive pictures of Paradise on the front of the Watchtower. Yes, at one level you do have to put a certain level of trust in your doctors, because they are the ones with access to the biggest store of formal training and knowledge and research-backed evidence that's currently available to the human race- but it's still an act of faith.

They're only human. They don't know all the answers. They can't even tell you how your body will respond to their recommended treatment, compared to the body in the next bed. Half your time in appointments is spent listening to a multi-page disclaimer about the side effects of the recommended treatment that might just kill you, or might just not; they don't know. What you get is their best guess based on the statistics, and statistics won't tell you- yes, you, the individual- whether you're part of the 95% or the 5%.

Undertaking any treatment is an act of faith. In the end, it's the patient who makes the decisions- to accept the doctor's best guess, or to go another way because their inner voice is screaming something completely different. Some people forget that they have that choice, I think. Or the responsibility is too big for them, and they put all their hope in the doctors being right.

Not me. I have to keep thinking, considering, weighing. Listening to what my body and brain are telling me about my treatment. I don't take my doctors at face value.

I mean, I'm fortunate in a way that I've had an unfair share of personal and social experience of the medical profession. My best friend is a doctor. My son's father is a doctor. I am in the fortunate position of knowing first-hand that doctors aren't gods, however much some of them might hold themselves up as such. They're just mere mortals, doing the best they can with the tools available.

We all know that the tools for treating cancer are way less than perfect. The chemotherapy, for example, makes the patient feel like bloody hell for months, yet gives only a tiny statistical advantage in terms of survival. But it's the best tool we have, so I considered it and I accepted it. I push to the back of my mind the terrible thought that it mightn't work, that all this might be for nothing, that I might not be part of that tiny percentage. If it doesn't work, I won't be blaming Dr Mellow. Or anyone's God, for that matter. It's luck and fate.

So when Rosie suggested to me that my next port of call- radiotherapy- was a choice, not a prerequisite, and said that it was up to the Lone Power Ranger to convince me of the value of that treatment, not for me to convince him otherwise- her words fell on fertile ground. As I approach the halfway point of my chemo I've started fretting again about the thought of increasing my chances of lymph problems in my left arm by having the radiation to the armpit.

Always ahead of myself.

"Do you pray? Do you believe in a higher power?" Rosie had asked me, again, when the subject came up. She always has time to look at the whole picture when I go in, not just at the current shopping list of woes. (That's probably why she's usually running an hour late.) She was trying to help me move towards a decision.

"No," I'd said. "I don't pray, but I believe we have an inner voice, a bit like one's conscience, that we need to actively practise listening to. You can't hear it unless you are used to listening. I try to listen to that voice."

Out on the bike, I do a lot of that listening practice. I contemplate the messy complexity that is the inner voice of the cancer patient- full of fear and courage, strength and weakness, despair and hope. And my inner voice did speak to me, eventually, on the subject of radiation. It threw the subject back and forth all the way to Eagle Bend, and eventually, when it had looked at it from every angle, it spoke clearly a hundred metres from home.

It said, "Your body is strong. It's taken everything you've thrown at it, and here you are still on the bike. You can take this too."

So I have to throw away the fear of lymphoedema, of burns, of a more complex reconstruction surgery, and just trust in my body to take on the next treatment with as much guts and strength and resilience as it's shown so far. It isn't the doctor's decision, any more than the surgery or the chemotherapy was; it's mine. I know my body better than any of my doctors. I am in the best position to judge.

I can't just rely on doctors, gods and proselytisers to solve my health problems for me. I also have to listen to that inner voice, and give it time and space and information so it can speak to me wisely, knowing everything it knows about me- from my disastrous family medical history to my emotional strength and determination. No doctor, no priest, no proselytiser for alternate therapies understands that big picture as well as I do myself.

Perhaps some people call this process prayer, and call that inner voice God. If so, nobody has ever managed to express that to me in a way that gelled with my own understanding. Whatever; it doesn't matter. We all have our own ways of making sense of the world.

But we have to find that way for ourselves. You can't teach someone to listen to their inner voice by going from door to door spewing words. It's something you learn, or not, from hard experience- from the disasters that come of refusing to listen to yourself. Whatever the outcome of my treatment, it will be my outcome. I will own it, take responsibility for it, and believe it was the best I could do.

And I guess that's what I have to say to myself, when I hit the troughs again next time round. This is the best I can do. I made this decision knowingly. My body has not let me down. I can survive this.

Remind me, okay? Because that, really, is the best that you can do.

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.

To.

Fro.

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.

Round Two: DING

One down. Five to go. Not that I'm counting or anything.

One of the nurses tried to tell me yesterday that I'm a third of the way through chemo, because yesterday was my second treatment of six. Oh really? I said to myself. Um, YOU might be a third of the way through our shared experience, sweetheart, but I have three weeks of coping with the side effects before I'll claim that fraction!

Never mind, she was trying to be encouraging. Maybe some people find the whole being poisoned thing the most challenging part.

Not for me. Yesterday was actually quite an enjoyable day.

What's that I hear you say? She's finally lost the plot? Yeah, yeah, I know- perhaps my definitions are changing; being stabbed in the chest and sitting in a chair for nearly four hours would probably not fit most people's definition of fun.

Context, folks, context.

For me, it was a chance to leave the measuring, timing and decisions to someone else. This constant self-monitoring of my standard medications (which are wildly different for different parts of the cycle), symptoms (including warning signs) and prophylactic treatments (which often clash with each other if you don't schedule them in the right way) is consuming my days in a way that you just can't understand till you go there.

There are the tablets to take before eating. There are the tablets to take with food, or after eating. There are the tablets that prevent you absorbing other things in your stomach, that need to be taken separately.

There are the tablets that constipate you, and the remedies that help with that. But you don't want the remedy to shoot your medication out in a ball of fibre before you absorb it, either.

There are the mouthwashes to keep your mouth free of ulcers and infection, the flossing and brushing to keep your mouth hygienic, the other mouth treatments to re-moisten your mouth because the soft, fast-multiplying cells inside are in meltdown. You don't want one treatment undoing the other, or causing agony like flossing followed by bicarb soda (squeeeeeeak).

And so on.

Yes, there's something to be said for sitting down and having absolutely nothing expected of you.

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

Before I lined up for Round Two, I'd been to see the GP's practice nurse to make up a Care Plan. It was perfect timing, a pure fluke based on my care plan having to be made in the New Year to have a financial benefit to me. But I was having trouble remembering every routine from last time I had chemo, and after ninety minutes explaining and documenting all my treatments, symptoms, meds and practitioners with Leonie, my head was sorted again and ready to go.

Breast cancer has had so much money thrown at it, because it's in epidemic proportions and some high profile ladies have been sufferers; I'm reaping the benefits of that. Between Monica, the breast care nurse, and that experience of making a Care Plan with Leonie, I'm feeling like the two of them have my back. Someone out there has a holistic view of what's happening to me. The big picture can get lost so easily when so many people are involved, and when your own brain is overwhelmed.

There are worse diseases I could have. Truly.

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

Not the best picture, but
you get the idea!

Going out without hair and with confidence... well, it's a work in progress, but I can feel a shift happening. The day before, when I had to go to town to have my blood test, I'd bought a few cheap trinkets to help me style up my new look. A waterproof liquid eyeliner to draw a motif on my forehead (hare krishna, hare rama...). Some stick-on body jewels to jazz the motif up. Some nice big silver earrings, with little shiny balls that matched the bell pendant that Christine had given me.

Teamed with the black hat, plus the beautiful home-made sarong my cousin Nancy gave me, my rainbow bag and my jazzed-up nails courtesy of Megan, the trinkets made me feel sort of unified in my approach. I felt like I could go out without cringing.

All those experiments beforehand had been worth it. When we picked up Rowan from the train the night before I'd felt a strong need to wear at least my fake fringe and the Joan Crawford turban, even though it was deathly hot in the car and my scalp was still feeling prickly and sensitive.

Baby steps. I'm getting there.

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

Spending some time with my son, who I see so rarely, naturally made chemo day much better. We were charmed yesterday; we went bike riding together at the crack of dawn (much easier for me to get motivated in company!!) and then found a car park right at the hospital door. We'd allowed so much time for contingencies that we were nearly an hour early, and yet we were greeted with smiles and allowed to get into it straight away.

Happy days.

Margaret lost no time telling me that my blood test results were stupendous; I was right back to tip-top shape. (Yay for me, yay for the bike and the Wii Fit, yay for the agonising Neulasta injection and all the fucking horrible suffering it entailed.) I told her about my mouth feeling like Polly had had a bloody cracker and then recycled it on the desert sand covering my tongue, and she came out with a sample pack of the Biotene mouth moisturising products that the drug rep had left her the other day. (Yay for freebies, especially ones that actually WORK.)

Once the anti-emetic had taken effect and I'd had my first saline flush, we got into the nasties again. The Doxorubicin, aka battery acid, must have set off some sort of poisoning alarm bell in my body; it didn't hurt, but there was definitely a physical sensation that this was a foreign body (and not a nice one) going into my veins. I had a little queasiness happening there already.

It lasted most of the day. I handled it. (Hello Ferdinand, welcome home. A nice plate of barramundi with lemon butter, fresh local beans- thanks Mel- and a jacket potato fixed his demanding little wagon at dinner time, and he left me in peace for most of the night.)

Then we got to the drips. Rowan and I settled down for a game of really truly not-online Scrabble, with the cricket on in the background to amuse us while we waited for our turn. (I say amuse advisedly, as we already knew the score and wanted to see exactly how a team could lose all its wickets for 45 runs.)

The Scrabble completely absorbed my attention, not least because I found myself quite physically clumsy. I was constantly dropping the fiddly lightweight letter tiles, as did the lady two chairs up from me who was playing with her companion. Rowan bailed us both out, jumping up to find tiles under chairs and under feet, as I contemplated how unlike me it was to be fuddle-fingered. But if she was dropping them too... at least I could blame being poisoned.

'Is' at the bottom left won me the game...
after I'd had to take risks twice to set
it up, three moves in advance!

I was behind all the way, till the very last move. I won by a point. Candy's brain 1, chemo 0. Rowan reckoned he'd done pretty well, considering I'd beaten him by 100 the first time we played a few months ago- even if I had been nobbled by the drugs on this occasion and had dreadful letters most of the time. His defensive play has improved astronomically in that time- look at all those inaccessible triple word scores!

It was fun.

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

And then there was a bonus. The 15-month-old granddaughter of one of the nurses paid her a visit, just after we finished our game of Scrabble.

O. M. G.

I am missing working with kids sooooooo much. I hadn't realised how much. The moment that little one came into the room, I was making contact like a deprived crack addict- and within 15 minutes I was singing her little songs and she was giggling and trying to talk to me. I completely forgot where I was.

I was sorry when I had to leave. Truly.

I haven't sung for months. (Now, there's a thought for depression therapy.)

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

I feel that I'm in better shape this time round than on Day 2 last time. Better prepared, better able to anticipate and treat the side effects. True, I feel more queasy- only to be expected with a repeated poisoning- but at least I have some evidence of what will shut Ferdinand up this time, without the failed experiments of last round.

(Don't mention the Milo. Ew. That is something I may never like again.)

So- I am fine. Thank you for caring. I will be waiting with interest for the developments on Day 5, after I stab myself in the guts with the Neulasta again this afternoon. The prophylactic treatments had better work. Wish me luck!

The other Black Dog

Velcro-dog. Photo by my brother Jeff. 

Velcro-dog is the kind of black dog I can embrace whole-heartedly. His constant closeness is a comfort and a joy. His neuroses are comic. His nagging tends to benefit me as much as him; come outside, he whines, come and play. You've been sitting at that screen for far too long.

He's almost a balance for that other surly beast who's shadowed me since my teens, the one who lies in wait for me round corners whispering his miserable darkness in my ears. Almost, but not quite. I've been waiting for that other dog to find me. It was inevitable that he would, given his regular curtain calls throughout my life. And there's only so long you can hold out, be positive, be up when something as terrifying as the Freeloader gets its hooks into you. I've lasted pretty well, really; I've surprised myself as well as others with my ability to laugh at nearly everything that bastard's thrown at me. But this week I finally got cornered by his rabid henchman, depression.

All the handbooks tell me that it's a common side effect of chemotherapy. It's not just the poisons messing with your brain chemistry, either. Feeling like total crap, physically speaking, for months at a time is a splendid slippery dip into the pit of darkness. Looking forward to a lifetime of uncertainty once you crawl out of that pit is hardly likely to help lift one's spirits, either. And while you're stuck at the bottom, the complete inability to plan anything with any confidence makes looking upwards well nigh impossible. It's easy to get fatally tangled in the dark shroud of here, now, how in hell will I get through the next five minutes of this, let alone the next hour? when you don't know when- or if- your next good day will arrive.

It was losing my hair that did it, of course. I knew it was going to be a problem. I fell, bounced back for a day, wrote my blog post about it, and promptly fell right back into the depths once more.

Without warning, I was back on the ghost train. Every time I caught sight of myself in a mirror I was shocked all over again. Even my Gollum-like shadow frightened me, all skull and ears on the floor in front of me. You can turn all the mirrors to the wall, but you can't turn off the sun.

The Freeloader was having a field day. Now you look sick, see? Now you look like a victim.

Ugly, ugly, ugly, whispered the judges inside my head.

Maybe it's harder for me than for some. From early childhood my whole self-esteem was built on the way I looked. People were always telling me I was pretty, taking my photo, admiring my thick, shiny hair. I was a June Dally-Watkins model by the age of five. That early career, which lasted till I hit my teens, just built on the unconscious, unintentional and totally warped foundation of appearance-based values laid down in me from birth.

You have to look pretty. You have to look like that all the time when you're in public. Look how happy everyone is with you, how they admire you when you look good! When you're pretty, life is easy.You don't even have to say anything. You can just smile and BE.

A dangerous message to give a shy, intellectual child who had trouble interacting with her own family half the time, let alone strangers. All my life, my public persona has been built on the way I look. If I look good, it's easier to talk to people. If I'm having a bad hair day, my whole demeanour suffers. Even with the people I'm close to, I feel self-conscious if I'm not looking my best. All my life, my appearance has been the key to my confidence.

Well, that mat just got whipped out from under me, didn't it? Every day was going to be a bad hair day for the next six months or so. And feeling confident about walking out the door- well, I really didn't know where to start, because every time I looked in the mirror I went ugh.

Ugh-ly.

I spent days 17 and 18 pretty much in meltdown. I cried a lot. I didn't want to get out of bed. The second day I didn't even get on the bike, because by the time I got myself out of bed it was far too hot. And I didn't have the energy anyway; I couldn't even imagine trying to push the pedals hard enough to get up the slight incline to Eagle Bend. Depression sucks the fuel out of you, and so does chemo, and when you've got both happening in the middle of the Bungy summer you end up feeling like a piece of overcooked cabbage- unappealing to look at, and damply floppy.

Not to mention smelling terrible. I was sure I had an odd odour happening. It started about a week before, a vaguely chlorine-like stench coming out of every pore. Even the mosquitoes noticed; they usually flock to me like I'm the entomological equivalent of a packet of Tim Tams, but lately they'd shown no interest in me at all.

Perhaps I should have been thankful for small mercies- my lymphy arm certainly doesn't need to be ravaged by the usual summer horde of buzzing vampires- but it's hard to be pleased about smelling like an over-treated swimming pool.

It didn't seem fair. I'd gone through all that pain with the Neulasta injection to try to get my blood count up quickly, yet here I was nearing the next treatment and feeling as flat as a tack. Why? Was it just the effect of the blues, or was something wrong? There was no way to find out on a holiday weekend, other than driving for an hour to bother the local hospital's emergency ward. I didn't feel like I was an emergency. I didn't have a fever. I was just miserable and lethargic.

I watched some TV shows to try to divert myself, and felt irritated by their depressing story lines- murder, power games, horrible little people doing horrible little acts of cruelty. I picked up a book; same effect. Did the whole world have to be so full of fucking misery?

I switched over to a comedy festival, and found everybody singularly unfunny.

Hmm. Maybe it's me.

In the end I got on the balance board and spent an hour in Wii Fit Land. It was the only diversion that worked. I needed someone to tell me what to do in words of one syllable, because I was buggered if I knew what to do with myself.

You're going too fast, said my virtual instructor sternly as I sweated buckets through the free step class.

Get fucked, I replied, stepping on and off like my life depended on it. Maybe it did. Or maybe I was just stepping in cross-rhythm triplets out of sheer bloody-mindedness. Being told what to do never sat that well with me.

By the morning of Day 19 I was weeping all over the Bear, unable to get out of bed let alone on the bike, and spilling over with dire thoughts. Did he wince when he looked at me too? Was he just being kind when he said he still thought I looked beautiful? I looked like fucking Gollum. Or ET, if you took the buggered-up chest into account. People used to look at my face and my cleavage, and now both of those were reduced to bomb sites. Hardly a wonder I felt ugly. As well as useless.

He's not a philosopher, my Bear. He's a man of action. And so when trying to reassure me didn't work, he got me up and took me to the beach.

It was an inspiration. Part of my problem turned out to be cabin fever. It's all very well in principle to stay away from crowds and avoid infection, but in practice it means staring at the same four walls for five months of your life. Little Miss Independence was going nuts after over two weeks of going nowhere but the odd doctor's appointment, and I didn't even know it till the Bear suggested breaking out of the compound and doing something just for fun.

Off he went to feed the turkeys before we sawed through the bars and made a break for it. Some things just have to happen, even if the sky is falling, Henny Penny. I started to contemplate what I could wear, and was well on the way to convincing myself that I couldn't go anywhere because I wasn't fit to be seen when the phone rang.

Maybe Jools is a spooky bitch too. I got a right royal reminder about exactly where to put the judges in my head, which was exactly what I needed.

“Don't let them get away with that,” she spluttered as I told her how they screamed ugly at me every time I passed a mirror. “Stop right there and challenge them. Look a little deeper at what they're saying to you. Say I beg your pardon, WHAT did you say?”

It made sense. I had to look it in the eye; that's the way I always deal with this sort of shit. Why wasn't I doing it now? I stopped ducking the mirror and just stared at it.

Black singlet top. Long black skirt over bike shorts, so I could get wet if I wanted. Black and white spotted scarf slung around shoulders; no point getting burnt.

Makeup. Earrings. Necklace.

No wig. Way too hot.

Hat? Sensible, but looks wrong. Nah. Red tea cosy, stuffed with bubble wrap.

Ugly.

I beg your pardon?

Um, okay, different...

Rainbow bag. Rainbow umbrella instead of hat.

Perfume.

I was a little overdressed for a walk on the beach. Like I cared.

“Wow. You look like an Egyptian princess,” said the Bear.

An hour later we were strolling along Chinaman's Beach, laughing as the wind tried to turn my rainbow umbrella into a spinnaker. We sat in silence at the end of the point, watching turquoise and white waves breaking over Snapper Rocks as the tide went out. Perched under a marbled wall of sandstone and surrounded by weirdly beautiful seaside plants, I thought about the healing power of nature and wondered how the heck I could have forgotten about it. 

Chinaman's Beach on my birthday.
Didn't take the camera this time.

I imagined taking everything off, even my bloody headwear, and lying in the water till it washed the ugly thoughts right out of me; imagining it was almost as good as doing it. Chickening out of the full monty, I ditched the skirt and ventured out to paddle my feet, watching the patterns of light through the ripples as the water sucked back out to sea. I stayed there washing the ugly off till my skin started to tingle.

“Time to go,” I told the Bear. “I'm starting to burn.”

And I set my spinnaker for home, mooring briefly at the local seafood co-op for some schoolies on the way.

Nature, the game changer. Don't let me forget again.

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

The prawns were a disappointment to me, but not because there was anything wrong with them and not because Ferdinand chucked a tizzy. They just turned out to be yet another food that now tastes like nothing.

There's no rhyme or reason to what's happened to my taste buds over the last week. Certain things taste exactly the same- sweet potato, cheese, nectarines and apricots, custard and Christmas pudding, kangaroo sausages, liquorice, peanut butter. Yet others either taste of nothing at all, or have acquired a strange and worrying overtone of something else.

Fishcakes, made from half-half red salmon and potato with my usual balance of seasonings, taste like I showed the label of the salmon can to the dish of potato and then threw in a bucket of dill. When I throw on lashings of lemon and salt to liven them up, I can't taste that either. Hot coffee smells acrid and unappealing, yet served iced over a scoop of ice cream it's still delectable. Garlic butter on my jacket potato reminds me distressingly of moth balls. The cardamon, cinnamon and star anise in my Pho soup, which were a splendid combination a week ago, now taste distinctly odd.

And so on, in increasingly bizarre ways.

For a dedicated food lover and cook like me, this random assault on my taste buds would in itself be enough to throw me into a decline of spirits. I remind myself that I'm blessed not to have thrown up at all so far; I remind myself that Ferdinand's peculiarities have been more amusing than dire.

Then the Bear reminds me that this is likely to get worse rather than better as the treatment goes on, and my spirits sink again. My pantry is already full of foods that appealed to Ferdinand for a few days and then were rejected. In five months' time, will there be anything at all left that I enjoy eating?

That's a sobering thought. Cap it with the thought that, thanks to the drugs, I'll probably gain rather than lose weight, and it's hardly a wonder that 'depression is a side effect of chemotherapy'.

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

This morning I still woke up too late to get on the bike, but at least I didn't beat myself up about it. I just got on the Wii and swore at the virtual instructor for an hour instead, then went and jumped in the lake. Um, I mean the dam.

And learning a lesson from yesterday's excursion, when Working Dog woke up limping for the third day in a row I decided that I'd be the one to take him to the vet. I tied a silk scarf around my Gollum-head and dared the mirror to say anything about it.

It didn't say a word.

“Are you up to the drive?” asked the Bear.

“You'd better believe it,” I replied.

I put Working Dog in the car and drove off. There was no way that other Black Dog was catching up with me today.

Getting into the egg noggin

The Freeloader's timing is always impeccable.

Christmas morning. I wake up bright and early, ready to psych myself into being cheery despite knowing it's going to be a somewhat moderated celebration. I still can't eat anything hard or fibrous- my mouth is far too tender- so we've got some nice soft tail pieces of Atlantic salmon for lunch, instead of the usual extravagant turkey roast. FFS, we spend all year growing out these amazing free-range turkeys, and we come to the one time of the year...

...oh, stop it Candy.

But I'm craving roast turkey with my special pine nut and raisin stuffing, and I ain't gettin' any.

It's hot already; the cicadas are shrilling away. I notice, as I lie there sulking about my non-existent turkey dinner, that my head feels a little itchy. I give it a bit of a rub.

And come away with more than I bargained for.

You're kidding. Today?

Tug at my fringe. More hair comes away. Not a lot; just a few wisps.

Oh. Okay. It's going to be today. Merry Christmas from the Freeloader- have some egg noggin.

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

Looking at the few strands of hair stuck to my fingers, I wrinkle my nose. I actually find it repellant. It's not like it's a decent hank of hair, it's just a few irritatingly loose hairs that stick to my hand and don't seem to want to shake off it. I guess I'm sweaty already. I can just imagine how this is going to develop as the day goes on.

It's breakfast time, but I seem to have lost my appetite.

The Bear wanders out to feed the bloody turkeys that I can't eat, and I decide to stop sulking and get on the Wii Fit that my brother bought me for Christmas. I opened it early; I have quite enough delayed gratification happening for one person, thank you. Like, every time I look at my scarred and unbalanced chest with distaste and think about how many months it'll be before I can have a reconstruction.

Like, every time I think about how long it'll be before my mouth doesn't feel like a budgie pooped in it and then kicked sand everywhere.

You would have laughed, watching me set up the Wii a few days back. Oh, I'd got it working alright, chemo brain and all, and I'd been pretty pleased with myself for that. But like all electronic gadgets, it was designed by someone young. Someone with 20/20 vision. I'd sworn at the remote control for at least ten minutes, convinced it was faulty, before realising it could be a good idea to put my glasses on and look more closely at the battery compartment.

Oh.

(Turns batteries the other way round.)

Anyway, I'd got it going and away I went, but it was so annoying the way I'd lean to the right, and the little figure on the screen would lean to the left. What was that about? And how come it reckoned my centre of gravity was slightly off-centre to the left, when I knew I was a kilo and a half lighter on that side?

Could I be over-compensating that much?

Surely not.

I leaned more to the right, to balance myself better.

The little person on screen leaned to the left.

WTF?

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

It takes till Christmas morning for me to realise that I have the frickin' balance board facing the wrong way.

Stop laughing.

(Turns balance board 180 degrees.)

(Moves to the right.)

(Figure on screen moves to the right.)

(Idiot.)

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

Once I've sorted that out minor glitch and stopped laughing at myself for being a dork, I have a ball on the Wii. Step class is kind of like dancing, which I've always loved. The jogging's an interesting intellectual battle between the machine, which keeps reminding me that I'll burn more energy if I keep a steady pace, and my burning desire to overtake my on-screen 'guide'. Hula hooping's a hoot, largely because I'm so bad at it that I end up convulsed with laughter as the virtual hoops I'm meant to catch keep clonking me on the virtual noggin.

And then there's the cycling. The Bear comes in, and ends up in paroxysms of mirth too as he watches me pranging the virtual bike at regular intervals. I am so bad at it that it's hilarious. It's nothing for me to head-butt a wall or a tree every time I turn the virtual handlebars.

Forty minutes of light to medium exercise have passed before I know it, and so has my bad mood.

Hair schmair. Don't think you've got the jump on me, Freeloader. I'll shave my fucking head. 

But first, let's have pancakes.

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

If only it was that easy.

I make the pancakes, which are scrumptious and easy (one egg, one cup of SR flour, one cup of milk, a pinch of salt- thank you Jamie Oliver), and then I do it- I shave my fucking head.

The shaving part isn't hard. But looking at myself afterwards- that's hard.

Egg noggin. Not happy.

I hate it.

I hate the way I look.

I hate feeling naked.

My scalp's covered in red blotches. As you would be, if you'd been poisoned and your cells weren't reproducing properly. It looks how the inside of my mouth feels.

And of course, by now it's getting on for midday, and the temperature's in the mid-thirties without a breath of refreshing breeze- so my complexion's getting red and splotchy too.

Eugh.

I feel like there's a spotlight shining on every wrinkle and imperfection I've ever hidden behind my curtain of hair.

There's that word again. I feel ugly.

And exposed.

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

I go and get the dead setter and put it on. It looks ridiculous.

I try a few of my scarves and turbans. They look stupid.

By now I'm getting suspicious of my own perceptions; I seem to be getting 100% negative feedback from the mirror, no matter what I do, which is a bit of a warning sign that I need another pair of eyes. Mine seem to have been taken over by a two-year-old who's screaming no, no, NOOOOO and stamping her little feet.

So I get brave and go looking for another human being.

I don't want to. I don't want anyone to see me like this.

The Bear's fast asleep on the couch, having his usual midday siesta. Selfishly, I make enough noise to wake him.

"I'm bald," I announce, as he blinks himself back to consciousness.

I don't even hear what he says, though I know it's kind. I'm too busy having the Meltdown I Have To Have. There are tears. There's anger. There's despair.

All the while, I'm telling myself that this is just about vanity really- and still I'm not able to get myself in hand. I'm aware that my inner spoilt toddler is in control. I'm aware that there are worse things in the world than having no hair. I totally know that I've had a privileged ride so far on this earth, looking the way I do, always knowing that I can rely on my pretty face to make an impression.

But hell, I'm used to feeling confident about my appearance, and I don't know any other way to do that confidence thing. Feeling like I want to hide is completely foreign. And bloody unwelcome.

When I stop bawling, which is about when the Bear starts and I realise I'm being a selfish prick because he has No Idea how to fix it and I'm just making him as upset as I am, I find a rueful smile for him, clean my face up a bit and start taking some pictures.

Maybe the camera can convince me that things aren't so bad.

Or not. I take maybe twenty shots, and amongst them find one I can maybe show the world. I put it on Facebook with a typed wail of despair.

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

The best shot I took.

Usually my friends can shake me out of my self-pity, but not this time. They keep telling me I look fine, beautiful, strong... I still can't see it.

I put another shot up, one where I think I look truly horrible. The feedback's pretty much the same. And still I think they're all barking mad, or telling polite lies.

Fuck it.

If in doubt, walk away from the mirror. The Bear had promised he'd go for a bike ride with me on Christmas Day; it's time to hold him to his promise. Lunchtime's been and gone and we're still full of pancakes. I feel as much like riding a bike as flying to the moon, but a voice in my head tells me that some more exercise could be just what the doctor ordered.

Once it's decided, I know I'll feel better as soon as I got on the bike; so it proves. I put my helmet on, and realise that I need to adjust it; hair takes up space. I feel weird, with nothing between me and the stack hat.

We fly up the road together as light rain starts to fall. My naked head does, at least, feel unbelievably cool after the stinking hot day. Soon the Bear's behaving like a teenager, as only he can, freewheeling along helmetless and shoeless, splaying his body out like a star for my amusement with neither hands nor feet on the bike (yet still staying on it, damn him- I have trouble letting go with even one hand without falling over).

We turn in at the neighbours' gate and zip down their driveway. Two emus raise their heads as we pass, then go back to grazing; a mob of kangaroos bounds away, disturbed by our laughter. It's simply good to be alive, and moving.

Fuck it, I think, when our neighbours emerge and offer champagne and a lazy chat on their balcony. Don't be so goddamn precious. Life is not about your hair. Why not.

"I'm bald," I say as warning, and take my bike helmet off.

They barely bat an eyelid. "You look exotic," says Jarvis with a grin.

Christine just hugs me. She's a woman with hair. She gets it.

And then I forget about my stupid egg noggin and lose myself in good conversation with good friends for an hour, till it's time for us to get back on the bikes and race each other home to cook our belated salmon, laughing all the way.

Jingle bells.

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

This morning the vain two-year-old who'd taken over my eyeballs seems exhausted by yesterday's tantrums. The view in the mirror is surprising still, but a little less confronting.

Northern Rivers

Cowgirl?

I try again. I put the dead setter on and fiddle with it for a while. It seems possible, at least, to do something with it. Even if I feel like I'm an actress, playing a part in some play I never volunteered for.

More like me...

Sophisticat...

Then I get out the hats and scarves and the fringe I bought. What the heck; let's see how many 'looks' I can create that don't make me burst out laughing straight away.

 The Joan Crawford still makes me want to giggle. But I guess it'll do, at a pinch. Basic black is always good.

The red tea cosy is a challenge, till I get creative and shove some bubble wrap inside it. (What the hell, you need something to take the place of all that hair or you look like someone stuck a pin in your noggin and let the air out.)

In the end, my look-du-jour is a bit more radical. Exotic, huh? I'll give you exotic.

I take off all the fake hair. I find an old hat, fiddle a bit, turn the brim up. I get my eyebrow pencil and draw a motif on my forehead, deciding to buy some of those stick-on jewels to decorate it next time I'm in town.

I'll give you exotic.

I go out like this to say hello to the Bear's mates. What the hell. I'd better practise this confidence stuff if I'm going to learn how to do it.

 I'm so glad I went out. They've brought me a mud crab for lunch.

The magical transformation of Dr Mumbles

My friend Vi is a spooky bitch.

"What's Dr Mumbles' real name?" she asked me sternly, after I'd described the reception I'd received at his office when I rang in considerable and chronic pain. "I'll sort him out," she promised.

From ten thousand miles away.

"Violet!" I admonished. With Violet, you just never know. Sometimes when she fixes her mind on something- well, you just never know. I didn't really want the poor fellow being laid low with the symptoms of chemo poisoning, or something. I needed him to keep treating me, even if he was being a right cow about it.

But I told her.

And honestly, Dr Mumbles did need sorting. I'd been bothering about what I was going to say to him when I saw him on Day 11, because there was going to be trouble from the Bear if Mumbles gave us another dose of Talk To The Knee. Not to mention Only Available During Scheduled Appointments.

He's got a very long fuse, my Bear, but when he blows- look out. Something would have to be said before things got out of hand.

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

The day had started surreally. Riding along in a chemo-daze, I'd been on top of the death adder sunning itself on the road before I realised what it was. As it struck ineffectually at my departing wheels, I'd started to register the short, lizard-like body and oddly spindly tail, which I'd all but run over. My eyes widened somewhat.

I didn't even know we had death adders up here. For the benefit of my non-Aussie friends, they're named that way for a reason. Not a snake you'd want to bite you on a remote country road, because you might well be dead before you got to the phone (let alone before the ambulance got to you). I was suddenly glad of my sturdy shoes, and my adherence to Biking Rule One.

If in doubt, pedal harder.

I was, unsurprisingly, much wider awake by the time I got to Eagle Bend, but this time when I saw something odd in the grass I chose the other option. If in doubt, stop.

I picked up the $50 note, put it in my pocket and spent the rest of the ride wondering how on earth that much money ended up lying on the ground in the middle of nowhere.

Surreal. But not a bad set of omens for the rest of the day.

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

The first thing that happened when we walked into Mumblesville at midday was that the receptionist spotted me, rushed over and started grovelling.

This was, um, startling.

"Candy! I'm so terribly sorry I didn't get back to you on the day you rang. I got caught up and I forgot to go through my list of messages to make sure I'd dealt with them all. Then I woke up in the middle of the night and thought oh my god, she's probably in pain again, and I felt terrible..."

Solicitously, she checked how I'd gone with Dr Rosie. Apologised again. And again. Was thrilled that the calcium seemed to have done the trick. Apologised again.

She was so obviously completely devastated by her oversight that I started to feel bad for razzing her up in the blog.

"Thank you for apologising," I said. "It makes a difference."

Choking back a regretful little sob of my own.

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

"Well, that was nice," I murmured to the Bear as I sat down.

"It's a good start," he growled. There was still Ground To Make Up, in his eyes, and it was Mumbles who'd be doing the walking.

Poor Bear. There he was, all dressed up in his city clothes with boots on, if you please, trapped in yet another oncologist's office on a stifling summer's day. I know I go on and on about how hard this all is on him, but unless you know the man and have watched him struggling with this like I have, it's hard to really understand.

I want you to understand.

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

When I was quite small, my battler parents took me to the Taronga Park Zoo for the day- an expensive and unusual treat for this little animal lover. From the whole of that day I have only one or two enduring memories. One is of the orangutans, squabbling like toddlers over the rope swing. The other, much clearer, is of the black jaguar.

Taronga's a wonderful zoo these days, with some of the best natural habitat enclosures in the world, but back then it was a maze of concrete and steel boxes. Little heed was paid to the animals' need for a familiar environment. That ignorance was expressed nowhere so baldly as in the big cats' cages.

That poor bloody jaguar. In an area no bigger than our back veranda, that creature of the wide open spaces paced back and forth, back and forth, back and forth on the concrete floor, his eyes aglow with frustration and misery. I stood watching him for perhaps half an hour, and he never missed a stride. Up and down that naked cage he marched, every muscle tensed, waiting in tightly controlled rage and despair for the moment when escape became possible.

It was torture. Torture for him. Torture for me to watch.

My man, forced to don shoes and front up for another round of Watch Your Beloved Suffer Agony and Torment, has that same look in his eyes when we head to town to see the doctor- any doctor. Out of his natural environment, trapped in a cage of misery, he goes to a place where even I can't reach him. His eyes become fevered pits of darkness; he paces, paces, and constantly looks for the door.

"He's half an hour late," observed the black jaguar, who never knows what time it is.

Scathingly.

Thankfully, at this moment Mumbles emerged and called my name before I had to look for the tranquilliser gun. I determined to look that goddamned doctor in the eye before I walked in his door; I'd stop still if necessary, and wait till he had to look at me.

But I didn't have to wait. Dr Mumbles met my eyes at once. Smiled, even. Held his hand out to the jaguar to shake.

(Didn't get clawed. Phew.)

Violet. What did you do to him?

And so began the next surreal segment of the day. It could have been a different doctor. He was personable. He laughed. He showed genuine interest in my progress, and asked the jaguar how he was travelling too.

I started to relax then. The jaguar was still twitching suspiciously, but I was ready to accept the backflip without question. All positives gratefully received.

Soon we were deep in discussion of how better to manage the pain next time round. He raised an eyebrow about the calcium; placed more faith in anticipating that Day 5 would be shitty, and starting a pain regime on Day 4 to get the jump on it.

Whatever. I'm convinced by the calcium, but I'll be hitting the 4-hourly Panadol/Neurofen on Day 4 as well. And allowing myself an extra, but lower, dose of the Dexamethasone on Day 5.

"You get that drop-away effect when you stop all the side effect suppressants on Day 4 anyway, so that makes Day 5 worse too," he said. "Maybe just stretch it out a little longer."

His eyes were even twinkling. It occurred to me, completely irreverently, that he's actually quite hot. Who the fuck are you, I wondered, and where did you put Dr Mumbles?

Not that I cared. Dr Mumbles could stay locked in the closet in perpetuity for all I cared. Long live Dr Mellow.

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

I released the jaguar onto the street and persuaded it to follow me to Cafe Cappello, where it found a cool breeze that reminded it of home and succumbed to a good flat white. I fed it spoonfuls of pistachio gelato and watched the hunted look fade from its eyes. Ferdinand smiled beatifically in the depths, asking for more gelato.

No way, Ferdinand. Remember the soft tacos? I'm not falling for that one again.

As I herded the big cat back down the street to the supermarket, we passed a small Sudanese child with a cornetto ice cream, his mouth comically daubed all round with melted bliss.

"He looks like a poddy calf that's had its head in the milk bucket," quipped the jaguar to the child's mother. We all laughed.

The air became a little thinner.

I chained the jaguar's paws to a supermarket trolley and got us through my extensive Christmas grocery list as fast as I could. The pacing and growling was starting again, but dammit, this was my first post-chemo day out and about and I was going to do whatever I could before I dropped from exhaustion.

Helping put the shopping in the car, I was amazed by the transformation in my endurance. I'd gone from beached and ailing whale to close to my normal self in a mere two days. The thought of cooking for Christmas didn't give Ferdinand the deadly lurches any more, though it'd all be soft food this time round out of deference to my delicate mouth. Here it was three o'clock in the afternoon, and I hadn't collapsed in a heap.

I think I could be classed as tolerating the chemotherapy well. Dr Mellow certainly seemed to think so.

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

And so I seem to have made it across the Valley of Despond. Dr Mellow thinks I'll be fine from here, till round two, and then I'll be better prepared for what it throws at me. There's no real reason to think it'll get harder to cope as the rounds go on, but the unpredictable has been known to happen.

So it seems the magic and agonising Neulasta injection has done its work. Instead of Day 11 being the start of a ten day climb back to health ready for another whack in the face on Day 21, I seem to have been given something of a jump-start. Oh, I'm not 100%- of course I'm not. Today's Day 12, and my legs felt like they were made of porridge when I got on the bike.

Though maybe that was in anticipation of meeting Mr Death Adder again in my travels.

But I'm certainly feeling a lot more like me. I've started hooking my own hacked-off hair into the wig cap I made, a task that felt completely beyond me when chemo started. I'm back on some of the household chores. I'm interested in cooking again.

It seems possible to do some relatively normal physical things, like giving the Bear a hand to put a tyre back on the RTV. It seems possible to stay upright and doing things for more than an hour at a time. Perhaps I can even make the odd, tentative plan.

There is life after chemo. Even during it. Thank the lord for that. And whether Dr Mumbles was magically transformed into Dr Mellow through an effort of will at 10,000 miles distance, or whether he was simply having a bad day last time we met, really doesn't matter; I am blessed, again, to have my confidence in my doctor restored.

And now, I think I shall find out whether Ferdinand likes pho soup. And then I'm going to make a Christmas cake.

The Valley of Despond

The hair just had to go.

I'd woken up twice now with my skull tingling and throbbing. It didn't matter what I did with my locks- leave them loose, tie them up, brush them out- I was starting to feel like I wanted to tear them out of my head in handfuls. The sheer weight of my long hair was too much for the dying scalp cells.

I'd told myself I'd cut my hair on Boxing Day. "You'll have hair for Christmas, but not for New Year," Dr Mumbles had said; I thought Boxing Day would be plenty soon enough to take the initiative and steal the Freeloader's power to unnerve me.

But as with most of the best laid plans, that just isn't how things were unfolding. The pain in my bones, though less than on Day Five, continued to torment me day and night. Ferdinand rolled and sank in my guts, demanding treats and churlishly hurling them around when I complied. Seaweed crackers had him turning up his nose and shuddering. Blueberries? Meh. A spoonful of dry Milo glued him to the plughole, leaving me near retching point for the first time then sending me running to the loo.

My teeth felt three sizes too large for my gums; biting down was agony. My parched throat was making me cough, and those sudden spasms threatened to dislodge Ferdinand post-haste from his lodgings below.

Something had to give. There's only so much discomfort a body can take.

The something was always going to be my hair. It didn't feel like it was part of me any more. It had become the enemy, and I needed to cut my losses.

Getting my mind around the whole hairless look first was a little harder than making the call to arms. I tied my locks back (ouch) and played around with my scarves for a while, taking photos and assessing the results.

Nothing looked like me, of course. I should know that by now. I looked like Madam Zelda. Cross my palm with silver. 

Or, according to one kind friend on Facebook, Liz Taylor. (Flattering, if far-fetched.)

But not like me.

With a wry smile, I recalled Samantha in Sex and the City sitting in the wig shop after her chemo, hurling bitchy comments at the poor harassed salesman- till, at the end of his tether, he reminds her forcefully that it's a wig. It'll never look the same as her real hair.

Just like me, in a turban, will never look the same as me with hair.

Accept it.

(I hear you, Samantha. I don't want to accept it either.)

I tore the scarves off again and sulked on the lounge for a while. Cutting my hair in this mood could be dangerous. And regardless of how much of a bitch I felt like being, I didn't have the bottle to hack my coiffure to pieces before I warned the Bear that his long-haired princess was about to become a goblin. That would be mean.

But the sun started to go down, the man came in and observed my distress- and, bless him, put his finger on the crux of it right away.

"You have to be comfortable," he said.

So I went to the bathroom and turned myself into a punk.

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

The photo is infinitely flattering of the job I did (amazing what you can do with a decent photo editing program and careful posing). Seriously, I'm practically bald in some spots, and there are all these long wispy bits thrown in. I didn't care.

But I couldn't quite come at cutting my fringe off. That's not the bit that's hurting. It can wait.

Chicken.

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

The relief was immediate, but sadly didn't guarantee a decent night's sleep. The Bone Factory had other ideas. My back was screaming, my gums howling. I swallowed my Lyrica, which usually knocks me out at least for a while, and closed my eyes.

Nothing. Nothing but pain and more pain.

There's a moment in the chronic, unrelieved pain cycle where you feel like time stops. The dead of night makes a good backdrop for that. You're stranded alone in the Valley of Despond, and the walls are so steep that you know you'll never get out. Nobody can hear you scream in there. There are no answers, because you can no longer think of the questions. You're only aware of time ticking infinitely slowly, while nothing changes.

I rolled over.

Rolled back.

Sat up.

Opened the laptop.

Closed the laptop.

Lay back. Sat up.

Rocked back and forth.

Turned the fan off. Turned the fan on.

Lay back. Rolled over.

Almost woke the Bear. Tried not to. What could he do?

Sat still.

Agony.

Do that routine repeatedly for six or seven hours at a stretch, and you're just about ready for committal in the morning. Because it's not six or seven hours; you know it's not. It's four and a half months in the Valley of Despond, and you've only just started.

I can't do this.

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

Does anybody just quit chemo, I wonder? Does anyone take their bat and their ball and their floating fragments of Freeloader and just go home? I wanted to, in the dead of last night. My self-belief was a non-event. If I wasn't so miserable I would have been furious.

I was well before this. I was doing so well.

By dawn, the rage had resolved itself into a ball of sheer resentment that my pain advice had been inadequate, again. Panadol my arse. I'd taken Panadol all night to no avail. I got on the phone to Dr Mumbles' office.

And got the run-around from his receptionist. You couldn't possibly speak to him until late this afternoon. He's not even in the office yet. I could try to catch him and call you back, but it wouldn't be until much later.

Call me back? There goes a squadron of flying pigs. I've worked with too many bulldog receptionists in my time not to recognise a steel-lined triple-bolted door when I knock on it.

I put the phone down in disgust. Poison 'em and then set 'em free, eh? No Correspondence Will Be Entered Into? Cure the body, screw the mind?

I'm probably being unfair. But being blocked by a fucking secretary when you're in severe pain does that to one.

Fuming, I resorted to Dr Rosie again. And sanity, finally, prevailed.

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

"Calcium supplements," she said calmly, smiling her beatific smile. "They're better than narcotics for bone pain. I found that out experimenting on myself when I broke my ribs, and I've used them successfully on many patients in different situations since then."

And prescribed the narcotics again, just in case. To keep me sane before the calcium kicks in. I took one at once, and by halfway home I was as high as a kite.

I can do this, I thought.

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

A few hours later, including a pleasant and much-needed nap, I had cause to remember that nothing about this journey is that easy. The Endone had made me nauseous again, and along with the calcium tablet was already making me feel tightly uncomfortable in the nether regions.

I'd have to start a whole new regime, balancing the side effects of the side effects. Maxolon for the nausea. Fibre supplements for the slow guts. More Laurel and Hardy shows, putting infinite pills into little boxes.

I sighed. Sniffed some mint while I waited for the Maxolon to kick in. And started stretching a new tightrope across the Valley of Despond.