Friday, January 25, 2013

Getting Better All the Time

See what happens when I try to break the pattern?

Off to Round Three... people were
stopping me in the hospital corridor
commenting on how I brightened
the place up!
Here I am, finally working out that my treatment day posts are generally overly-optimistic and trying to get some perspective before I put hands to keyboard this time... and of course, half my friends get worried by the silence and send me anxious messages to ask if I'm okay.

Yes- I'm OKAY. And thanks for caring. It matters that you care.

Actually, I'm remarkably okay this time round, especially compared to Round Two's experience.  It's the morning of Day 3 and I'm still positively cruising. Dr Rosie's tank-balancing pills for Ferdinand (an acid reliever called Ozpan) have been miraculous so far, moderating both the terrible pressure of the gas in my stomach and the nasty lye-taste in my mouth. Oh- and NO HICCUPS. Hoorah!

I mean, last night I managed to cook, eat and (wonder of wonders) even taste some pan-fried Atlantic salmon, new potatoes with butter and a little ratatouille made from our home-grown eggplant, garlic and tomatoes with some onion and herbs and parmesan mixed in. It was delightful (and no, the garlic wasn't redolent of mothballs).

Bravo, Dr Rosie. By the time this chemo thing is over, we might have it all worked out.


Backtrack a few days.

By Day 21 of Cycle Two, I was feeling so relatively normal that I took to the streets of Lismore by myself again to attend to a growing to-do list. Getting out is so empowering, it's worth the fatigue factor afterwards- and besides, I wanted to spare the Bear another dose of Appointment Anxiety.

A sweet vampire at SNP took my pre-chemo bloods, which again turned out to be splendidly recovered; Dr Mellow, musing upon this later in the day, gave the nod to my attempts to do up to an hour's exercise a day as a contributing factor.

I can't stress enough how much this here couch potato has benefitted from the self-imposed exercise regime. It was about the first thing I read about handling chemo, and it is So Right. Once I've actually managed to drag the lethargic bag of lard out of bed and get through the pills-food-pills choreography for the morning, putting one foot on a pedal of the bike or pulling the Wii Fit balance board from under the TV cabinet is the only hard part left.

And then I start to feel good about myself, and either enjoy the scenery and my thoughts (if cycling) or to laugh and enjoy my own feeble efforts to improve on last time's scores on the Wii.

And if I fall back into bed for a couple of hours afterwards, so what? The blood's pumping the poison round my body and knocking out the stray Freeloader particles, I feel like there's more oxygen in my lungs, and I don't cringe quite so much at the little extra spare tyre the Dexamethasone's putting round my hips- because I know I'm doing what I can.

It's just getting that first foot out of bed, and onto the floor. That's the hard bit.


But back to Day 21. From the Twilight Zone I floated round to Shartan Hair Studio to talk about getting the Dead Setter's midnightly hue made more flattering, because the Bella look really wasn't doing it for me. Wouldn't want the SNP vampires getting ideas...

Those women at Shartan are wonderful. Amanda was so clearly delighted to see me that we enjoyed a huge hug, an examination of today's manicure design (I'd gone for the mulberry nails with leopard-claw gold dots) and a bit of a chat before we got into the nitty gritty of lightening or streaking the colour back to something more flattering for a Woman Of Somewhat Mature Years. I'll take a little hair sample round next time I'm in town, so they can do a test drive. And then I'll get the Setter styled, and maybe while my hair grows out in autumn I'll have something to keep my head warm.

Cafe Cappello called to me next (oh my, how surprising), as did the Blue Cheese Gnocchi. Oh my, indeed. Can those boys cook. It tasted incredible. I'm salivating again now just thinking about it, and three days out from chemo that's a real compliment. I sang their praises on a corner of the paper table cloth, which I'd origamied into a hat to pop on the empty (and I do mean empty) plate.

The smiles on their faces healed my heart a little more. See, my secret weapon is still working. Random acts of kindness do help me keep the anxiety and fear at bay.

Oh yes, the worry does creep in again from time to time. I still feel the little pads of fat on my neck (god I love middle age) and worry that my lymph glands under there are full of cancer. Of course I do. Any tiny bump I encounter while I'm doing my massages- cold fingers on my heart.

File it under ask Dr Mellow, push it away, and say something kind to someone who deserves it but isn't expecting it. IT WORKS.

But back to town. Satiated and smacking my lips, I moseyed on round to Femme Mystique where I picked up my Real Silicone Tit from Robyn- another gem in the Lismore breast cancer landscape. In over 20 years of fitting traumatised women, she's learned a thing or two. Like, while fitting one, sweetly invite the other to perhaps come back in fifteen minutes? Because privacy is good.

Smart woman.

Blackbird-like, I wandered into a clothing shop a few doors away where the well-displayed bling on the side reminded me how well it draws the eye from my oddly naked head. And got my own little dose of Random Acts of Kindness for the day.

"I just had to come and say you look beautiful," gushed the shop assistant, popping out from behind the counter and smiling. If she was engaged in a retail ploy, well damn, she was good at it. We had a little chat, I had a little browse feeling I could hold my head high even in a trendy clothes shop, and then I had cause to wish yet again that someone would tell the clothing manufacturers and importers of Australia that the average dame is a size 14.

No, NOT size ten, or 'small'. Read my lips. Trying to buy a stylish but sufficiently non-revealing swimsuit after a mastectomy has been complicated by the fact that no designer seems to go any higher than a skimpy 14; I did write a little note to one manufacturer pointing this out, and got a bland form letter back with no solutions. (Not good enough, Gorman.)

Disappointing, it was. Another problem to solve myself, with my op shop nous and my sewing machine.

But Robyn is far from disappointing. She made so triple-certain that I was happy with my $440 lump of squeezable silicon, that it looked perfect under clothes of any colour and fit, that I knew how to take care of it without voiding the warranty. They're surprisingly fragile, these fake tits. One misplaced safety pin and your padding is piddling. Or something. They even have a special storage box, to be used at all times. Sitting them anywhere else can cause irretrievable breakdown.

I emerged happily symmetrical, though feeling like I'd just adopted a baby.


Looking at my pendant watch to ensure I wasn't late for Dr Mellow's appointment, I noted that it most certainly wasn't 8.20am. I ducked into a jeweller to get the battery replaced and found myself in an extended conversation with an elderly, tired and sweet shop assistant whose wife has endometrial cancer and severe lymphoedema in her leg.

How lucky I am.

"It's a maintenance situation," he said diplomatically, and my heart broke for him.

We talked about who cares for the carers. He was so tired. I wanted to give him a big hug and a heap of help, but all I could offer was my ear. I think it meant something to him, at the end of another long day which was far from over when he got in his car.


So on to Dr Mellow, who has definitely managed to put Dr Mumbles six feet under. (RIP, Mumbles, and I have the acid bath waiting if you get any ideas about resurrection.)

"Any new side effects, other than the spots on the fingernails?" he joked.

Poor fingernails. It is IMPOSSIBLE to grate
ginger or garlic without massacring one's
manicure. Just sayin'.
Very droll.

He wasn't surprised about the horrible blimp that Ferdinand had become, given what the poisons would be doing to the lining of my stomach. He suggested adding more Maxalon to the drug regime along with Dr Rosie's Ozpan; I did, and I've been splendid so far.

He also suggested, smiling, that I avoid jumping to conclusions about my eyebrows and lashes, or even my residual tonsure of hair.

"It can still happen," he warned. "They might fall out at any time."


And then I started asking questions about the future, again. He reinforced what Rosie had said about the radiotherapy.

"You have to balance the benefits against the risks. You have to be convinced that it's giving you something."

We talked about what actually happens with the radiotherapy and the lymph system. Basically, the problem is the burn scarring from the X-rays blocking the channels that I've been so faithfully massaging every day to draw the liquids out of my bung arm, so the lymph eventually can't escape at all. It can be a serious problem, incapacitating the arm.


"It can be worked on," he added, "but it makes it harder."

I put it to him that my body has stood up to every test so far- was that an indication that I could stand up to the radiotherapy too? He seemed to think that was a fair assessment, without making promises.

"We would normally do radiotherapy for this grade of tumour. The chemo sweeps through your armpit and we hope it's got everything, but this is another strategy we can add to try to catch any stragglers that the surgery and chemo have missed. And the hormone therapy will help starve them too."

Back to me. My decision.


The hormone therapy gives me pause, too, because it may well throw me back into the delightful (!!) symptoms of menopause that sent me through hell ten years ago. The only thing that fixed that in the end was Chinese medicine (with my family history of gynaecological cancers I couldn't relax about the idea of HRT for more than six months), so I ran that idea past Dr Mellow too.

"It can be helpful, but you have to exclude anything that mimics oestrogen or you're undoing the benefits." And rattled off a long (long) list of do's and don'ts.

In the end my brain exploded, and I decided to ask my Chinese doctor Rochelle to send me the ingredient list of the stuff I took last time- plus any other remedies she could recommend for Dr Mellow's perusal. Forewarned, forearmed- that's my motto.


Of course there's no real way to be forearmed against the vagaries of the weather in this age of climate change. Thank heavens for Cyclone Oswald, which in the course of dumping flooding rains on Queensland has sent some precipitation and a drop in temperatures our way. The relief for my poor battered body has been tremendous, and long may it last. I actually have the energy to go around the house closing windows as the wind gusts and eddies around us, blowing out the fly screens on its way.

Right now, I can do little things like that to help myself, even with the Bear off in town attending to the shopping and other chores in case we get flooded in. And when you have cancer, you see that being able to look after yourself is a privilege you never really appreciated before.

Yep, the Beatles were right.

"It's getting better all the time... better, better, beeeeeet-ter..."

Thursday, January 17, 2013

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.

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.

Thursday, January 3, 2013

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!