Tuesday, June 25, 2013

Loop theory

(Challenge: see if you can pick the cunningly concealed, very exciting piece of news in this post.)


I did not have a happy menopause.

Think night sweats so diabolical that I had to leap right out of bed and run outside in the middle of winter. Think mood swings so intense that I completely failed to conceal from my then partner that I was head over heels in love with someone else (whoops). Think complete failure to maintain a straight line in either thought or behaviour.

I was a right old mess, I was. And it lasted for over six years.

Well, here we go again. This evening I took my first hormone therapy tablet. Arimidex is designed for women who've already endured the 'change of life', but that doesn't stop it throwing you straight back into the bull pen.

Pity my poor Bear. This is his third round of breast cancer, but I do believe it'll be round four of Living With a Menopausal Maniac. And I'll be responsible for two of those.


Along with the joy of menopausal loop theory- send no money, we will bill you!- comes the delight of rattling like a maraca in the hands of a Parkinson's sufferer for the next five years. Yes, I don't just get to take the Arimidex; I also win a concurrent five years of glucosamine and krill oil to counteract the joint pain, plus ditto of calcium and Vitamin D to counteract the reduction in bone density.

I did not enjoy returning the granny-style pill organiser to the dining table tonight. It's bad enough wearing granny bras.

Ah, cancer. How you piss me off.


So why, you might ask, am I being subjected to this latest indignity?

The idea of the Arimidex is to starve any remaining fragments of hungry Freeloader of yummy, delicious oestrogen by binding to the enzyme needed to produce it. That puts a chemical spanner in the works of the oestrogen production line and the whole thing comes to a crashing halt. (At least, that's what I gather from the page upon page of information provided with my script. I'm not a doctor, I'm a wild-eyed woman with chemo brain. Look it up before you quote me.)

Mumbles reckons that this drug, on top of the treatment I've already received, improves my chances of avoiding a recurrence by about 60%. That sounds pretty radical to me- I may have misunderstood him- but the message I get is that I'd be a fool not to try it. So try it I will, side effects and all.

If my hair starts to fall out again, mind you, There Will Be Trouble. I like my Megwig, I do, but There Are Limits. I've only just got to the point where I can pinch the regrowth between my finger and thumb. Sure, having passed through the Monkey incarnation my head now resembles a silver-arsed wombat in retreat, but small steps. Small steps.


The Bear decided not to come in with me at today's appointment with Talk To The Knee. When we walked into the consulting rooms a neat three minutes before my designated appointment time of 11am, only to be told that Mumbles was running over an hour late AND there were four people waiting before me AND he hadn't even arrived from the hospital yet where he was doing rounds, the Bear silently turned on his heel and walked out.

Not a good sign. Even with my back turned to him I could feel the steam rising above the dreadlocks.

In the end, we went downtown and layered Bunnings Rage on top of Medical Waiting Room Rage for a while. May as well be hung for a sheep as a goat, and all that.

"No, we don't carry that paint in 2 litre pots." 

"Oh really? I bought two 2 litre pots here two weeks ago, you clown."

Oh alright, I didn't actually call the (non-)assistant a clown to his face, but if he'd had another neurone to match the lonely one banging around in his skull he might have been able to translate my tone of voice.

And wonder of wonders, one little phone call to Management and ... here comes another red-apronned fool carrying- yes- a 2-litre pot of my paint!

(Head. Desk.)

Painting, you ask? Yes, we've been sealing the wood on the treehouse where this
whole story started. One of these posts is the reason I found the damn lump in the
first place, so I guess I owe this building my life. Nice to be able to get back to it.


So by the time we were summoned back to Mumbles' rooms by the shrill of my mobile, which irritatingly interrupted our excellent coffees at Cafe Cappello, the Bear was in no state to take the Mellow-Mumbles gamble. He dropped me at the door and scarpered for a while with my full consent.

I grabbed the initiative at once; by now I was in no mood for mucking around either.

"Had a bit of a busy morning?" I parried, grinning as I looked him in the eye.

Back in the filing cabinet, Mumbles. Paging Dr Mellow!

"I love starting my day two hours behind the eight ball," was his wry riposte. Turns out the other oncologist was missing in action today, so someone had had double ward rounds.

Fair enough.


Writing the script for the Arimidex, he started to find a little twinkle as we manipulated our merry way to a Medicare-refundable bone density test. Hallelujah for my somewhat early menopause; apparently having bugger-all hormones left at age 42, according to a blood test way back then, might just swing me a baseline test that doesn't cost me my house. Or something.

Checking out my nuked chest, he agreed cheerfully that it was a remarkably mild reaction. Hardly burnt at all, really. I asked if the Lyrica I'm taking for the stabbing nerve pain (radiotherapy- another gift that keeps on giving) was compatible with Arimidex, and got the nod (hallelujah again).

Less worthy of hallelujahs was the list of possible side effects he reeled off, but at least the suggested fixes weren't all produced in a test tube. I was glad I'd taken a notepad, as there's no way my chemo brain would have remembered the shopping list by the time I got to the chemist. Also not gaining any happy-clappy praise was the news that my continuing peripheral neuropathy would go away when it damn well felt like it, not when it suited me.


I have no idea how we ended up talking about my cholesterol levels, but it's just as well we did. Turns out that those cholesterol-lowering margarines I've been using, to counteract the unwelcome effect of the chemo on my cholesterol levels, are full of phyto-oestrogens.

Not the greatest idea for someone who's had an oestrogen-positive tumour.

He pulled up my most recent blood test then- what did doctors do before the internet, I wonder?- and smiled.

"Your cholesterol's gone right back to normal anyway," he informed me. "So you can stop worrying about that."

(Done. Yay for me.)

He reiterated that my exercise regimen was a fabulous idea, as it would help with just about every side effect I was likely to experience. I have to admit to preening a little there. I've not missed a day since the beginning of radiotherapy, and as an added bonus I'm actually starting to drop a little bit of weight.

Nothing like a life-threatening illness for increasing one's willpower, eh? It would be ironic if it was cancer that finally got me down to my ideal weight in a sensible way. I've always been either 'quite a lot' to 'way, way' over... or, once, way, way under. My weight charts when I was young made a yoyo look sluggish, given my foolish attempts to diet my way to social acceptance by starving myself in between binges.

It would be nice to think that this cattle-car journey had given me something more, in the long term, than a lopsided chest and anaesthetised extremities.


And then, the crucial question. How often do I go under the machines to check for recurrences?

And the answer is... I don't.


"There's no evidence that constant tests improve outcomes," Mellow reassured me. "In fact all those x-rays are counter-productive. If you ring me up complaining of constant back pain, we'll put you under the scanner again, but otherwise there's really no point. It puts you more at risk from all the radiation, and it makes you unreasonably anxious while you wait for the results."

And that made me a very happy little camper. Even if I do have to loop-the-loop back into crazyville for the next five years.


How did you go with the challenge?


Smack yourself heartily on the back if you spotted the fact that I enjoyed my first cup of coffee since DECEMBER. Yep, three months out from my last chemo I can finally enjoy the smell again. And that is a bit of loop theory that I'm very happy to entertain.

Friday, June 21, 2013

Monkey business, cliches and sonic screwdrivers

I've wanted to write for a while now about the language of cancer. The way we talk about it as a society. Honestly, it is so deeply culturally screwed that you'd need a sonic screwdriver to fix it.

Paging Tom Baker.

I mean, take the headline that appeared over the story in our local paper about my helicopter evacuation during the floods. I wrote the story, but the sub-editors saw fit to add the headline in which I was referred to as a 'cancer victim'.

A WHAT?!!!


Does that sell papers, calling someone a victim? Or is it just a moment of editorial thoughtlessness that's repeated over and over every time a cancer story comes up with no Angelina Jolie to drool over?

Nobody called her a victim. Victim. FFS. The very word implies a helpless, hopeless state of existence.

(from the Oxford Dictionary)

Passive? Are you kidding? Passive is a one-way street to dying from this bugger of a disease. I am taking part. Like Angelina, who grabbed her fate in both hands and started steering, I refuse point blank to be a fucking victim.

Sure, I might not be in control of everything that's happened to my body lately, I might have been unlucky enough to score a Freeloader that's done me some harm in the health lottery- but people, that doesn't make me a victim.

It makes me a patient now and then. That's all.


Sure, it's made me depressed on occasion. Of course it has. If it hadn't, you could probably diagnose me right now with some sort of detachment-from-reality disorder. Sure, I've spent some time feeling so terrified that I considered sleeping in the bathroom to save time.

But those moments are fleeting, in terms of eight months of vile treatment, and when I eventually bounce back I'm neither helpless nor hopeless. When I bounce back, it's usually with some sort of monkey business- because whatever life I've got left isn't enhanced by misery, and laughter is the best medicine.

Forget the 'stay positive' mantra, which is so far past its use-by date that it's walking to the bin on its own, trying to escape its own rancid smell. PLEASE. FORGET IT, and NEVER say it to a cancer patient again, or you might just find yourself with a sonic screwdriver up your fundamental orifice.

Stay positive? No. It's much more important for us just to accept the inevitable lows, ride the wave of despair, and then try to return to a point where we can laugh.



A day of feeling despairing about my appearance, after having to look at myself in the mirror naked from the waist up to apply cortisone cream to my radiation rash, had me on the mat. I would never be the same shape again; I'd never look like the old me, the one with the amazing and eye-catching cleavage. And god, my head looked ugly without my makeup and the Megwig hiding the awful truth.

My students were once inspired to give me a Dolly
Parton LP as a joke- can't imagine why.
How could my Bear love that? How could he ever find me attractive again?

This moment was a long time coming, really, but it was inevitable. When you've had your physical image ransacked like that, it doesn't matter how much you tell yourself that it's all vanity and physical appearance is overrated, or that it's all in how you look at yourself. Eventually, you have to face that moment when you realise that some of this experience is going to be with you forever, and you hate it.

I didn't need comfort right at that moment. I needed to vent without being censored by a society that is deeply uncomfortable with acknowledging hard truths.

I certainly didn't need some batshit-crazy hippy do-gooder telling me I had to 'stay positive'. (Paging Mr Baker!) I needed to experience that moment, survive it, and then move on with the knowledge that I could survive it.


And sure enough, it was followed the next day by the realisation that my peculiar pattern of hair regrowth made me look exactly like the star of that old Japanese kids' programme, Monkey.

Monkey Me! (Note: with
clothing and makeup on.)

Don't you think?

Of course, I posted that picture in my Facebook breast cancer group, Young Pink Sisters, because laughter shared works so much better than laughter alone. We don't pretend to feel wonderful all the time in there. We don't even TRY to be permanently positive. It's not possible.

But boy, do we bounce back. Boy, do we laugh.


There are no victims in that group, either. There are people who are probably going to die, there are people who are momentarily down at heart because of pain or fear or emotional suffering, but nobody is lying down passively waiting for the steamroller of cancer to crush them. You just don't. You wail, you scream, you hide under the doona for a day- of course you do. But then you push the bad stuff away- because all you've got guaranteed to you is this moment in time, and you'd best try to enjoy it if you possibly can.

We don't need to be bombarded with cliches to get through cancer treatment. They don't help one bit, and they're often counterproductive. Far more useful is to hear support of our stubborn refusal to quit, to hear (briefly!) what you're feeling- honestly- and to share our enhanced sense of the ridiculous.

Ridiculous? You don't think that word fits in the context of a possibly terminal disease? Think again. The other morning I found myself sitting in front of the TV with a vibrator in my armpit.

Stop laughing for long enough to listen.

See, this was my thinking. I'm getting massage from Miss Sunshine, the lymphoedema physio, to try to reduce the build-up of fluid in my armpit. Another technique she uses is ultrasound, which uses sound waves to break up the hardening lymph. I can reproduce the massage at home, but not the ultrasound.

Hmm. How else can I get deeper wave movement into my armpit?

Well? Are you still laughing? My armpit's gone down a LOT. It's ridiculous, but it's working.

And it got a lot of laughs, too, from people who really needed help that day to bounce.


There are plenty more cancer cliches out there where those ones came from. I already told you what I think of brave.

Survivor is dodgy, too, because it's just not accurate. How the fuck do you know whether I'm a survivor or not? Any day I could be diagnosed with a secondary. It could be tomorrow, or it could be in ten or fifteen years. That's something else that's permanent, that we have to stare down every day for the rest of our lives and learn to live through.

We are survivors of daily fear and sadness- that's all. Not of cancer.


And there are words that trigger some of us and not others. Journey is one. To many of us with cancer, that word belongs to joyous holidays and adventures, not to a disease that steals a year or more of your life.

It doesn't bother me, possibly because the word has less delightful connotations in the context of my reading and my life. I used it happily in the subtitle of my Fighting the Freeloader Facebook page- A journey through breast cancer.

I was thinking of the cattle trucks on the way to Auschwitz, not of Jetstar on the way to Hamilton Island.

I was thinking of the agonisingly slow and uncomfortable train trip to my first teaching job in the country. I was alone and heading into the unknown, with absolutely no reason to believe that anything but trauma was waiting at the other end.

I was pretty right about that, too. Being a first-year-out music teacher in a disadvantaged country school, with a Head of Department who knew absolutely nothing about the subject and was a sexist bully bordering on frankly abusive...

...not all journeys promise an exciting and recuperative break from the grind. Some are hell on earth.

I'll stand by my journey.


I guess what I really want from the language of cancer is a little more honesty. A little more authenticity. A few less glib cliches rolling off the tongues of people who haven't been there, and so haven't a clue what it's like.

If you don't know what to say, this is what you say: "I don't know what to say."

Hold the advice, unless you've actually been there and done it; hold the easy cliches, slipping from between the pages of your third-hand tabloid experience like cheap advertising brochures. Hold the facade of empathy, because you once knew someone who had cancer; hold the anecdotes with miraculous or disastrous endings, because none of those people are me.

Here is what you say: you make 'I' statements all the way.

"I would like to help, but I don't know how." 

"I feel so helpless." 

"I'm really angry that you have to go through this." 

"I'm so glad you came today."

And if you're writing a headline, enough with the labels. It's not a battle, we're not heroes, we're not being brave, we're most certainly not victims and we'll never know if we're survivors till the day we die. We're people with cancer. That's all.

And hey, all of you- don't take cancer so bloody seriously all the time. I had my breast removed, not my sense of humour. And even if I was dying, then like my friend Lucy the Lump I'd want to go laughing all the way. Give me some honest-to-god monkey business over a graveyard expression any day. Give me Monty Python, not Thomas Hardy. (Andrew Denton, I salute you: the first man to laugh about cancer, WITH the patients, on national television.)

And a little word of warning. I am lucky to have such clever and sensitive friends, who rarely make a verbal misstep. They're lucky too, because heaven help anyone who tries any of those cliches on me. I may not have a sonic screwdriver, but I'm very creative with certain other pulsating devices...

...and I happen to have one right here.

Tuesday, June 11, 2013

Lemmings and wild horses

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


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

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


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

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

Did somebody call my name?


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

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

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

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

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

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


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

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

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

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

I should be so lucky.


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

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

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

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

Wise words, especially for me. I loathe exercise.


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

You're done! Bye! 

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

Is it?

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

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

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

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

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

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

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

Here's a link to the essay.


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

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

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

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

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

But I digress.

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

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

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

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


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

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

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

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

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

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

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

And so on.

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

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

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

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

He did.


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

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

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

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

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

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

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

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

(Even more exciting to actually achieve it.)

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

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

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

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

Saturday, June 1, 2013

Get over it

My name is Candy Lawrence, and it's been nine weeks since my last chemotherapy.

Pardon the shades of AA. Sometimes I feel like I'm addicted to talking about it. Sometimes I feel like I must be boring you.

You'd think I'd be over it by now, wouldn't you?


It's hard for people who haven't been through it to understand. Chemo isn't one of those things that stops, and you instantly get over it. I know you're all keen for me to feel better. It must be hard sometimes for you to know what to say to me in this weird in-between period, when I'm through the worst of the treatment but not quite myself yet.

Let me help you out.


In answer to your questions:

No, my hair has not started to grow back yet. I've been as bald as a badger for weeks while people have asked me this. In this last week I've finally (FINALLY) started to develop what they call 'peach fuzz'- a soft layer of down all over my skull which is the first sign of the follicles recovering.

Peach fuzz.

Surprisingly, the fuzz makes a noticeable difference in terms of insulation. My head gets less cold. I can sleep without a beanie.

But I won't need a brush or comb any time soon.

No, Ferdinand has not been flushed down the drain yet. My stomach still randomly rejects various foods, usually after the event (thanks, you smelly old fish).

The pepperoni pizza, for example, seemed like a good idea at the time, and hallelujah, I could taste everything on it! But half an hour later Ferdi was moaning and groaning about hot chilli and inconsiderate aquarium owners. Similarly, chocolate ginger looked attractive as a way to reintroduce my favourite folly into my diet, until I realised that it had ushered that ghastly metallic taste back into my mouth. (WTF is that about?)

So I am still going gently, gently with food and drink. I can enjoy a Tia Maria and milk, for example, because of the tummy-soothing milk, but I wouldn't dare pour a G & T into Ferdi's tank. I'm sure there would be an uprising.

(Try not to picture that.)

No, I still can't feel the ends of my fingers and the soles of my feet. Dr Google paints an unattractive picture of the waiting time to be rid of that inconvenience. I can expect to be free of my peripheral neuropathy in something between three months and never.


Is it getting better? Well, some days I think so. And other days- well, let's take yesterday, when I picked up the pot of boiling water that we use for immersing the turkeys before plucking them, and promptly spilled a big slosh of it down my leg. My hands just aren't reliable when I can't feel my fingertips.

(Thank heavens for aloe vera. I don't even have a mark on my leg today, let alone any pain.)

And then I was sewing up a tear in the Bear's shorts (don't ask), and I dropped the needle, and do you think I could pick it up? No way in hell.

So let's just say the frustrations are continuing on that front.

Yes, I still have chemo brain. If anything, I'm noticing it more.

Certain things seem particularly good at slipping out the sides of my memory. Several times now, I've been talking to a close friend and have realised I can't remember their name. (That's deeply disturbing.) Phone messages? No idea. Did someone call? Multi-tasking is a thing of the past, because I just forget I started the other job.

That's hard on someone who's always had a memory like the proverbial pachyderm.

Yes, I'm still painting my nails. And I'm bored to death with it, thank you, so no, I'm not doing it because I've realised how empty my life was before I spent an hour every weekend slapping colour on my fingertips in a totally amateur way and then worrying about how soon I'd crack it all off by actually doing something.

My kingdom for a tame manicurist. (MEGAN!!!! Come here!!!)

It takes up to 5 months for the whole nail to grow out from the bed, and so that's how long I have to go on painting the damned things. My bare nails are a total fright, so hiding them has some merits. They're still red at the tips from the taxotere, and they're flaking and breaking even with the polish on- but (thank heavens) they're not lifting from the bed, and that's the way I intend things to stay.

No, I am not yet up for a full-on social life. And it's not just because the Grand Pianos of Radiotherapy have finally descended onto my back (though they have). I never stopped being tired before the rads started, so I'm not quite sure which treatment to blame for this one. I have good days- occasionally- but, more often, I have day after day when I have trouble dragging myself off the mat.

This is what my day feels like, every day.

Wake up unable to open eyes.

Bear brings me a cup of green tea (no, I still can't do coffee- waaaah!). Still can't open eyes, let alone sit up. Let tea get half-cold.

Feel ungrateful. Finally drag myself to sitting position. Sip tea, slowly, attempting to prise eyelids open.

Put cup down. Think about lying down again and going back to sleep.

Time check. Where did that hour and a half go? Realise that if I don't get up Right Now, I'll run out of time to fit in everything I have to do before leaving for rads.

Drag self up. Turn on Wii Fit. Flog self to wakefulness for 40 minutes or so. Remember why I never owned a hula hoop. Crash virtual bike into sea. Remonstrate with Bear for laughing hysterically at me.

Force down light breakfast. Realise I'm bored with Burgen raisin toast but am too buggered to think of anything else. Place remainder of toast into black furry garbage disposal unit. Wipe slobber off knee.

Fall into shower. Wash randomly, trying to remember to use Moo Goo milk wash on the nuked bits. Stand under shower massaging swollen underarm in a trance whilst hoping that's not full-on lymphoedema starting. Rinse thoroughly for fear of retribution by rads staff.

Look for cortisone patches. (Therein lies a tale too long for this short history.)

Get dressed. Get made up. Put on beautiful wig that suits me, but which will feel like a steel band around my forehead within about two hours. Curse my big head. (Shut up.)

Fall into car to go to rads. 

And so on. Are you seeing a theme? The theme is 'fatigue'; absence of spoons, if you liked that analogy. I Do Not Have The Energy to socialise. I'm flat out just doing the stuff I have to do.

If I'm foolish enough to tell you that I'll drop in or attend some event, don't believe me.


About those cortisone patches.

The radiotherapy is still treating my skin well, but last week I started to develop an itchy rash. (Just my skin cells complaining about torture by fire, apparently.)

Pretty remarkable after four weeks of rads.
The red bits are the rash.

The rads nurse had a look and gave me some stick-on patches, which can apply slow-release cortisone for up to a week, so that I wouldn't scratch and break the skin. (The last thing I need is a burns infection.)

Well, I don't know who thought this one up, but see if you can spot the obvious mistake here. Rule One of radiotherapy is moisturise, moisturise, moisturise. And cortisone patches refuse to stick to skin that's had anything at all applied to it. You have to wait till all lotions have been absorbed completely before you can use them.

So, given that I'm moisturising at least three times a day, there are long periods when those reusable sticky patches have to be placed, sticky side up, on a flat surface for some considerable time.

Our house gets very cold in winter. There's no insulation in the roof, so all the warm air from our combustion heater goes straight to god instead of circulating. Right now the only cosy spot to sleep is on a mattress on the lounge room floor, right in front of the heater, so that's where we are. And that's where I carefully laid out my two sticky patches while I put on my night-time lotions the other evening, on top of my discarded t-shirt.

Can you see where I'm heading.

An hour of tedious TV later, when I was convinced the moisturisers had all soaked in, I went to reapply the patches.


They were gone.

At first I blamed chemo brain. Obviously, I'd put them down somewhere else and forgotten. I searched every surface of the entire house, including the outside bathroom.

No patches.

I turned the bedclothes upside down, trying not to disturb the sleeping Bear who'd given up on free-to-air TV (twenty four stations, nothing to watch) some half hour before, staggered over the mattress after stoking up the fire and crashed out beside me.

No patches.

I woke the black furry toast-eater, who was curled up in his usual spot on the genuine leather lounge chair he regards as his 'throne' (poor deprived beast).

No, my patches were not stuck to his arse.

I gave up, mystified. Whacked on some cortisone ointment instead, which doesn't work anywhere near as well.

The fire was really quite hot that night. The Bear stirred, rolled over. Stuck his bare feet out from under the covers.

And there were my patches, stuck to the soles of his feet.


Never let it be said that radiotherapy has been without its moments of redeeming slapstick. I tried to control my giggles lest I woke the sleeping patch-thief, but several hysterical snorts issued forth regardless.


So... as I was saying...

...if you were holding your breath waiting for me to get over the chemotherapy, I'd advise you to stop it before you faint. It's not going to happen any time soon. The rads nurse says 12 months is a reasonable time to wait for some sort of normality to return after chemo.

(Excuse me while I punch something.)

Apparently, I look great. It's sort of reassuring to be told that, but at the same time it's fucking irritating. (Don't expect a chemo sufferer to be rational, either.) I mean, yes, I can look almost normal on the outside when I'm tarted up (if you don't count the fact that I'm suddenly a short-haired blonde), but it doesn't mean that I'm over it. I'm still not the picture of glowing health on the inside, and I won't be for ages.

That's not to say that everything's dreadful, of course. I can taste my food again, I can cook and eat and enjoy it as long as I stay within certain parameters, and that's wonderful. I don't spend whole days in bed moaning.

I've spent odd hours doing some things I used to do without thinking about being sick. Painting the wood of the treehouse, where this whole crazy story started. Bringing in firewood- two pieces at a time instead of an armful, but at least I'm helping.

So yes, I can see the light at the end of the tunnel more clearly. Mind you, I'm not quite sure what the scenery's like out there in Post-Treatment Land. And I still have the joys of Arimidex hormone therapy to traverse before I get there, remember. It ain't over till the fat lady in the throes of a second menopause sings.

But over it? No. I don't even know whether I'll ever be completely over it. And I certainly can't tell you, to answer yet another question asked by an innocent bystander, whether I'm cured.

I feel cured. I feel like the Freeloader has been ejected, and I'm just coping with the clean-up. But then, I never noticed he was there in the first place, so how the hell would I know?

And honestly, the cancer experience isn't something you ever get over, really. There's always that little voice in the back of your head, that little bit of paranoia about every lump and pain and wheeze.

Over it? No, I'm not over it. But I'm getting through it. And I'm a damn sight closer to the end of the tunnel than I was last October.