Message in a bottle

Nothing like telling everyone I'll be blogging less to make me feel like blogging more.

I've always been a little contrary.

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

The port-a-cath came out yesterday, as promised. It's a milestone, sure, matching the milestone of one year tomorrow since I found the Freeloader- but I told you that already. I'm not repeating myself; it's just that a few interesting things happened on the way to the operating table that bear recording here.

Significant things. Thought-provoking things that are worth bottling and throwing out on the ocean of the internet, in the hope that they'll wash up on someone else's shore at a useful moment.

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

The first significant thing that happened to me yesterday was that the nurse weighed me. Whoopee. I love the scales the way only a human with various learned maladaptations around food can do.

I love them when they whisper that I'm lighter. I hate them when they scream that I'm a lump of lard. They can affect my mood for days, or weeks, and they can completely drown out the voice of reason. I've been anorexic, and I've been borderline obese, and the bloody scales have contributed to those problems rather than helping me solve them.

There's a photograph floating around somewhere of my friend Renata dropping our scales off the first floor balcony of our share house. I was waiting down the bottom to record the moment of freedom for posterity. Those fucking scales were driving us nuts. It's an occasion we savour and cherish to this day. Since then I've tried to avoid weighing devices, because I know that they're dangerous. They do bad shit to my head.

And of course, these fucking scales told me loud and clear that I was three and a half kilos heavier than last time I weighed in about a fortnight ago on the Wii. WTF? Here I am, watching what I eat and exercising like my life depends on it-

....oh wait...

So I was, of course, monumentally pissed off.

And then something odd happened. I got sent off to change into my Versace fashion garment, AKA the humiliatingly equalising surgical robe that makes everyone look like the same carelessly-packed bag of Pontiacs.

(The spuds, not the motor vehicles. I wouldn't mind so much looking like a bag of luxury cars.)

The dressing room was thoughtfully equipped with a delightful full-length mirror, just so the side of beef on the way to the carvery could get the full effect of their transformation to lumpy carbohydrate status. Perhaps depression makes one easier to anaesthetise.

But wait. First I had to undress, and there was no way to avoid catching a glimpse in the mirror.

I did a double-take.

Because you know, that woman in the mirror didn't look half bad. All that exercise had made a difference. The waist was, yes, a waist. The legs and upper arms were toned, rather than flapping in the breeze like last week's washing. Even with the missing boob, I actually liked what I was seeing.

Shock.

People. Significant moment. Follow my lead and toss those bloody scales off the nearest cliff. Muscle must weigh more than fat, and numbers can lie. Stop visiting the bathroom every morning for your daily fix of bullshit, and start finding some sort of movement that you enjoy and can sustain instead.

According to my BMI, I am still significantly overweight. Screw that. I'm on the right road, and I'm liking what I see, and I refuse to be overruled by numbers, formulae and faceless statistics.

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

The next interesting thing that happened was that the nurse asked me if I'd like my jewellery taped. I elected to take it all off.

It was hot today... can you tell... makes those hot flushes even more fun...

At this point, my jewellery seemed to decide it had a mind of its own. I took off two necklaces, completely forgetting the Buddha on a chain that Christine had lent to me at the very beginning of my fight with the Freeloader. The only time it's left my neck has been during surgery and radiotherapy treatments. I'm not a Buddhist, but that necklace is a symbol of the unfailing support of my friends and neighbours. 

I took off my loopy, eye-catching earrings, completely forgetting

I do like these little studs... but I came close to giving them away.

the little studs above them which are the last remnant of my previous relationship. I wear them to remind myself how resilient I am, that I survived that terrible ending, that it will always be part of me- not to be denied, but rather learned from.

And then, having been gently reminded to remove the pieces that are so much a part of me I no longer think of them as decoration, I got to the rings.

Gentle reader, when I first changed my rings from my left to my right hand for fear of developing lymphoedema and having to have them cut off, I was at least five kilos heavier than I am now. They came off easily then, and they went on my right ring finger just as easily.

Like I said- hot today, so the finger is a bit swollen. It wasn't yesterday. But you can sort of see that the gold ring is larger.

Now, listen. I always wore them on the same finger so the amber and silver dress ring, which I bought for that finger to remind me not to get married again (long story which culminates in Renata and I making a pact to appear at the other's nuptials with a shotgun and intent to kill show just cause if we were ever so silly again), would keep the much larger gold wedding band in place- it was far too big for me, no matter what hand I wore it on.

Yesterday, my friends, the amber ring came off quite easily again- but that gold wedding band would not come off. Yep, the one that the amber ring was keeping in place.

It's not mine, that wedding band. It was my mother's, and it's the only piece of her jewellery I have; the rest was stolen when my house was robbed just after she died (yes, you can cry right there- I did).

Her hands were much larger than mine. I have my fine-boned grandmother's tiny hands. But yesterday, despite the facts that I was five kilos lighter than when I put it on and had suffered five dehydrating hours of nil-by-mouth, that ring- the one that was about three sizes too big for me to start with- was not coming off.

"My mother appears determined to come into theatre with me," I told the nurse, somewhat wryly. "You'd better tape it up."

So she did, and I was left thinking about the power of symbols, and messages in bottles.

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

How do we explain the inexplicable?

I am not religious- not at all. I don't believe in the merciful god that gives comfort to many cancer patients (if there is one, he's got a damn lot of explaining to do about the way my good, kind and funny mother died after a year of living hell). I don't believe in guardian angels. I don't believe in ghosts.

I acknowledge there are sometimes presences. I've felt the presence of people who are no longer here in the flesh, whether that's through a twist in time or a peculiarity of memory or some sort of physics we don't understand yet.

But I can't explain how a gold wedding ring can shrink.

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

So I just accept that somehow my mother managed to make sure I knew she was with me yesterday. In the same way, I was reminded of my strong support base of friends and my own strength in adversity. I was nervous about having surgery again- I'll admit it now. But all those symbols somehow found a way to remind me that I wasn't alone.

You can't do cancer on your own. Don't even try. That's the message in that particular bottle.

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

Tomorrow night, by complete chance, I'll be dining with Christine. Christine was the first person I told about finding the Freeloader, and here I am joining her for a meal a year to the day afterwards. I shall take Buddha with me. I think it's time to return him to his rightful owner. I feel like his work here is done.

There's a bottle I have to take with me tomorrow night, too. It's an '88 Henschke Hill of Grace which I've been sitting on since I bought it, the year after my mother died. It ties things together rather well. I don't drink wine much any more- it stopped agreeing with me when got pregnant all those years ago. Except for Henschke reds. Henschke reds have always agreed with me. I helped drink this bottle's twin at my son's wedding.

It seems right to open that special last bottle now. People keep encouraging me to celebrate- well, I'm the type who lets things unfold rather than planning them. With all my thoughts about symbols and messages in bottles as I took the dogs out walking this morning- the only realistic exercise I could attempt the day after surgery- that particular bottle came to mind.

So tomorrow I shall open it, to mark the end of this crazy year of dancing with death. Whether it's really the end of my fight with the Freeloader- well, who knows. That message is not contained in this particular bottle, or in any other.

But there's no question that it's been a crazy, crazy year.

Trying to remember my life

I've been quiet lately.

I know some people are wondering about me. Wondering if I'm okay, or if I've taken a turn for the worse. Wondering why I've dropped out of sight. Wondering if they should ask. Worrying, maybe.

Sorry.

Strange things are going on for me at the moment. On Sunday it will be exactly a year since I went to wash my left underarm in the shower and found a bruise.

And under that bruise, a lump.

Impending anniversaries tend to bring out odd feelings and behaviours in me, and so it is with this. One small part of me is desperate to believe that the year just past was a glitch, sent by the cruelty gods to make me grow. A plot twist in the story, not the beginning of the end.

That part of me is wiping out every backsliding thought that passes through my head. It blots out the possibility of the cancer coming back, which is a mercy beyond belief. With the help of that stubborn, focussed part of my personality, I can almost convince myself that it's over now- that I've moved past it.

If I don't look in the mirror,

Is that me?

But I thought this was me...

if I manage to ignore how unrecognisable some parts of my day have become...

Cycling? ME?

Stretching on the Pilates roller. That's not a breast.
That's my ribs, with the scarred skin stretched so tight
it feels like it might pop if I lift my arms any higher.

But I do, and it doesn't,

but it's not how I'd choose to spend my morning in the sun.

...if I exert that huge effort of will and overlook

the ridiculous hair,
the terrible skin,
the compulsory exercise,
the morning tablets,
the random stabbing pains across my scar,
the selective taste buds,
the painful stretches,
the creeping fatigue,
the follow-up appointments,
the mail from the BCNA,
the hot flushes,
the joint aches,
the moodiness,
the constant pain in my upper arm,
the strategically-placed pillow under my bad arm at night,
the little blue pop-up Pink Sister statuses on Facebook,
the complete absence of a career...
oh, and don't forget the evening tablets, they're the ones that'll keep me alive...

... yep, I can just about forget I had cancer.

Almost unintentionally, I've declared myself a survivor. I didn't plan it. I didn't really think about it. I just felt it.

Game over, Freeloader. You lose. *

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

My brain argues the point daily; you can never know, it whispers, and it's right.

Damn you, Logic.

But logical or not, that determined part of me stares down the fear.

Fuck you. I'm better.

Better? Pull the other one, it's got bells on. The damage never leaves you, parries Brain.

I'm 56 years old, I riposte. I'd expect to feel tired after doing stuff all morning. I'd expect to have all sorts of little physical things starting to go wrong. So fuck off, and when you get there, fuck off some more. **

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

Actually, thanks to all that exercise I'm probably far less tired than your average nearly-57-year-old, given how much I'm actually doing. Spring in the Bungy. It's too good to miss. And it's why this determined and stubborn woman is out there trying to prove she's better, instead of in here updating the Freeloader every few days.

When you take out all the new and mostly unwelcome stuff, this is what the life I remember Before Cancer looked like.

It's about finding sneaky hens, laying next to a tree-
and that can mean following them through the bush
all morning...

... then stealing some of the eggs to make kick-arse fresh meals-
look at the colour of those egg yolks going into the quiche!
I love to cook... especially if we grew it ourselves.

...letting enough eggs hatch so we'll have meat for the next year;
bringing in the hen and chicks to safety, feeding and
nurturing them, cleaning pens, mending fences...

...kick-starting the vegie garden after last summer's terrible weather-
weeding, digging, turning, weeding again, adding manure, planting...

...welcoming back the spring birds- Mr Kookaburra is a
regular visitor and waits for us to throw him a worm or two
as we weed the vegie beds...

...catching our breath on the back verandah, with the turkeys
clucking around us and the air full of the scent of jasmine
and wistaria blossom...

It's a good life, my life. I want it back without the shadows. I don't want to spend the rest of my days dodging in and out of darkness.

Sure, there will be moments of white panic, when my sight is suddenly half-gone and criss-crossed with zig zag lights, and I wonder if it's secondaries in my brain rather than my regular migraine attack.

Or when the aching in my shoulder is so severe that I wonder if my bones are being eaten away from the inside. Add cancerchondria to my list of things to ignore.

There will be numbing fear again, I know, every time I hear of another friend being diagnosed with metastases. All that goes with the territory.

But it's not going to eat my life. I won't let it.

This is my life.

The children's stories I write. I need to find a
publisher. I need to finish the next one.

The fictionalised biography I'm writing. I'm only halfway
through. I need to finish it. The story needs to be told.

Fighting for what I believe in. Not just fighting a
goddamned Freeloader.

Working with children. It's what I do.
It's who I am.

Being where I want to be, spending time with the people who matter. 

So please don't worry about me. I'm not dying any faster than I was yesterday, or last month. I'm just busy trying to remember my life, trying to turn over those new and distracting pages as quickly as I can each day so I can get back to the main story.

I know that I don't want my blog to become a catalogue of minor whinges. There are always things that a cancer patient in recovery mode could whinge about. I have a place to do that, with the Young Pink Sisters, and that refuge will always be a part of my life, just like the side effects and the fear and the goddamned infernal tablets. But I won't let the last year define me for the years I've got left.

The Freeloader has changed my life, but he hasn't stolen it. He got a year. That's all I'm giving him.

If you spend real live time with me, you'll learn quite quickly that I'm not quite the same. I do tire easily. I do snap without warning over trivial things. I'm less polite than I used to be.

Get used to it.

But essentially, I'm still me, and I'm damn well claiming as much of my old life back as I can. Tomorrow I go back to hospital for the day so Dr Goodguy can take my port-a-cath out. It's an unwelcome reminder, and it's in the way.

I'm not abandoning this blog. I'll still keep you updated when anything important happens, or when I get some flash of insight that seems to need to be shared. No doubt reconstruction will provide some enticing and amusing blogfood, but I'm not allowed to so much as plan that till next year. Something to look forward to?

So watch this space if you will, but don't hold your breath. I'm okay. I'm not over it, because we never get over it, but I'm getting up and walking away from it whenever I can. I know I'm lucky to be able to do that. Not everyone was born as bloody-minded as me. Not everyone has the support I've had. Not everyone had the sheer blind fortune to be born with a resilient body.

I pay my luck forward. If you've got breast cancer, you can count on my ear and my time when you really need it. I've started a Facebook support group for women in recovery mode who need encouragement to exercise and eat well. (Irony right there, given that only the Freeloader has given me the strength to deal with my own bad habits.) I'm not forgetting I was sick; I'm just turning it on its head and using it- to help me, and to help others.

Because really, if I remember correctly, that's what my life was always about.

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

* I stole that line from Pink Sister Julie Ours' post-cancer tattoo. Game over, you lose. Love it.

** And I stole that line from another gutsy Pink Sister, Sarah Hafez, who always manages to make everyone else laugh despite being terribly bloody ill herself.

Dr Goodguy is surprised

I love my surgeon.

Oh, not the fluttery-pulsed, red-faced, squirmy-tummied sort of love. Not the sort of love that lives in a fantasy world of breathless anticipation. That would be silly. I may have identified as Monkey recently thanks to the hairdo, but I haven't resorted to gibbering yet.

No, I just mean that wonderfully safe feeling you get when you actually trust someone. You know they won't tell you any lies. You know they really care about what happens to you. You know they'll do their absolute best to make things go well for you.

That's Dr Goodguy. It's quite a while since I saw him last, but he welcomed me in for today's checkup with genuine warmth. I felt like he remembered me, and was pleased to see me. I felt like he gave a damn.

I'd been looking forward to my surgeon's appointment today, because Dr G makes me feel secure. If that little bit of swelling under my arm was something worrying, he'd find a gentle way to tell me and he'd know what to do about it. If I just had a mild case of cancerchondria, he wouldn't make me feel like a fool. He'd quietly check everything that needed to be checked, and he'd tell me everything I needed to know.

Every patient deserves a surgeon like Dr Goodguy. Especially if they're at emotional melting point. They should clone this fellow, I swear, and hand him out to every woman in the world who's suffered a lump of deadly tumour in her breast and a lump of chilling fear in her heart.

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

I thought I'd been doing pretty well, emotionally speaking, since my tradie tears last week. My friend and fellow-environmentalist Sharyn read that last blog post, totally got it and suggested we hie ourselves to the coast forthwith and let the sea breeze blow the bullshit away.

Well, she didn't put it quite like that, but that's pretty much what she meant.

See, she's just about come out the other side of her own battle with the Freeloader. She's getting closer to that magic five year mark every day. But she understands how the Freeloader can wear you down, and she understands how nature can be a healer. I needed a kick upside the rear to get outside and let the natural world do its work on me, and she gently provided it.

We had a glorious afternoon. Look.

So I've been pretty chirpy since then, all the way to this morning when I turned on the shower to get ready for my trip to town... and the goddamned gas heater wouldn't light. The water spewing from the tap was stone, motherless cold.

I swore a few zillion times. As you do. Tried again, and again, and again.

Realised that I was just emptying the water tank for no good reason, and the clock was ticking.

Wrapped myself in a towel, thanking the Powers that Be that we'd had a few sunny days in a row. Ran outside freezing my tit off (yep, it was a nicely frosty morning) and changed the hot water back to solar heating.

Turned on the tap again.

And what did I get? Stone, motherless cold water for twenty seconds... and then no water at all.

?!

Normally something like that would provoke a flurry of my very best x-rated vocabulary, followed by a call to the plumber. This morning, it just made me cry.

Still not better. I still have a way to go.

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

So I turned up to Dr Goodguy's office feeling a little under-groomed, having hastily dabbed the vital elements with freezing cold water and slapped on a face over the frostbite in the small window left to me before I needed to fly out the door. (Possibly on a broomstick. Did I mention that the Arimidex is giving me the most delightful blind pimples on my face? No? Pass me my cauldron and black cat.)

Brrr. I'd been counting on the shower to warm me up. I grabbed a warm hat from the back of the wardrobe, noted it needed a good brush-down and had a wonky brim, but shoved it on anyway; I just couldn't cope with the Megwig doing a boa constrictor impersonation on my skull today.

I hardly looked as I slapped my eyebrows on. They were probably crooked too. WTF. Who cares.

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

Dr G didn't seem unduly disturbed by my unusually asymmetric appearance; he greeted me cheerily and gently grilled me on how I was feeling, before asking to see the bomb site.

As I lifted my left arm till it all but touched my ear to let him inspect his work, his eyebrows flew skywards.

"Wow, you've got great movement in that arm." His surprise was as palpable as my armpit.

So was mine; my eyebrows joined his on the ceiling.

"I can get it up there, but it's so tight- it really hurts."

He grinned.

"Yes, but you can do it. Some women can't get it further than this."

And did a creditable one-armed chicken impersonation.

"Getting it right up like that- that's really good."

I shut up about my arm then. 

Small mercies, Candy. Keep doing your bloody exercises.

The small hardened lump left him completely unperturbed.

"Scar tissue," he smiled. And went on, "It all looks great."

Checked the other side, as usual; nothing found. (Phew.)

Back to the desk we went.

"So what's on your shopping list today?" he chuckled, as I drew out a sheet of paper containing the usual barrage of questions. Useless for me to try to remember them; chemo brain has replaced anxiety as the thief of my usual orderly thought processes. If I don't write my questions down, I find myself paying upwards of $100 an hour to be a nodding dog smiling blankly at my specialists. And then I get home and wonder what the hell was that about, and what did he say anyway?

No, I've learned to prepare.

1. When can I get my port-a-cath out?

There's one school of thought that says you leave your port in. I mean, if you end up relapsing and needing more chemo, there's a bit of loop theory involved if you've had it whipped out the moment you got to the end of Round One. It's threaded all the way into the heart, you know. Not the most minor procedure, putting it in.

Relapse? ME?

Fuck that for a joke. It's coming out on September 6th.

Now, that port-a-cath has been wonderfully useful. One quick jab, and the chemo drugs were on their way without the nurses turning me into a voodoo doll. I've seen some terrific bruises and outstandingly mangled veins thanks to chemo, and none of them were on my arms.

But the party is over. I haven't the faintest intention of having more chemo, even if I do relapse. (Which feels extremely unlikely most of the time, I have to say.)

No, it's quality of life over quantity for me, and I am NOT going back to that particular banquet table for seconds. I've eaten enough 'nothing paste with metal sauce' (not to mention 'metal paste with nothing sauce') for one lifetime. I've had enough excruciating pain. The hair that's coming back is staying.

Goodbye, port.

2. When can I have a reconstruction, and what's the waiting list like for public hospital versus private, and what are the costs, and will you do the reduction of the other breast, and does that still count as part of my cancer treatment, and who would you refer me to, and...

That, of course, was about twenty questions in the end, but Dr G patiently answered them all.

The bottom line is that he is brick-walling my plea for a referral until next year, regardless of how well my body handled the radiotherapy.

"You really need to give your body a chance to recover," he reasoned. "It's been through such a lot."

Fair enough. My mind probably does, too.

Yes, it'll probably be expensive to get a plastic surgeon to make me a new left breast, and there could be a wait of a year just for an initial appointment if I go public. But Dr G can still do the reduction on the right breast afterwards, and that will be a no-gap procedure.

"I regard that part of the whole cancer treatment," he said. "You need symmetry."

Always thinking of the whole woman.

That made me feel a whole lot better. Not because of the money, but because he did such a good job when he did the first operation on my left breast. It wasn't just neat- it also left me with nipple sensation, despite the fact that the whole thing had been chopped out and relocated.

"No guarantee we'll get that result again," he smiled, and I realise that too. But knowing he's done it once, I like my chances better with him than with a stranger.

See, I've got a bit of a dilemma there. My Bear is a breast man. I told you that before. It would be better in some ways to leave that right breast alone.

BUT- and it's a big 'but'- there's no way the best plastics man in the world could make another F-cup to match it out of my surplus tissue. I'm no Skinny Minnie, but I most definitely don't have over a kilo of fat to spare on my tummy or back.

Or, for that matter, on my big butt.

So it's be lopsided (even if less lopsided) all my life, or mess with the other breast too. I'll be messing, and hoping to hit the jackpot a second time with nipple sensation.

I trust you, Dr Goodguy. I trust you to do your best.

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

And that, really, was about it, till I see him on the table on September 6th.

"It's great to see you looking so well," he said as he ushered me out. Smiling, and looking me in the eye.

And you know, I bet he doesn't say that to all the girls.

Running on empty

When I was a little girl I had a peculiar stoicism which bewildered those whose job involved inflicting pain on me. I never cried, never even flinched at vaccination time; I looked at the needle, even, when I was having blood taken. And I endured countless drillings and the occasional extraction at the dentist without anaesthetic.

It's not that I didn't feel the pain. I did. But I wouldn't show it. I was one tough little cookie, and I was an expert at self-control. Mind over matter, and all that.

And then I grew up, and endured a childbirth that was a living hell. I can describe it in darkly comic terms now; imagine pushing a watermelon covered in razor blades through a piece of inch-and-a-half human polypipe, and you're getting a blurry picture of what I endured. But at the time it wasn't funny.

Something happened to my stoicism that day. It broke, and I've never been able to put it back together.

I don't look at needles any more. I have an injection before dental work. Put me in pain, and I scream for relief. One night of bone pain after that Neulasta injection was enough to send me crazy- remember?

Oh, I still have a strong mind. It just doesn't work on my pain threshold any more. And thanks to the Freeloader, I'm starting to see that pain tolerance isn't the only human limit that can be broken if you push it too far.

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

Really, I'm doing so well. Sure, I only have about two-thirds of a day of energy in me, but my fitness is probably the best it's ever been and my strength is slowly increasing.

I can help around the farm again. I can tidy the house a little without having to rest for the remainder of the day. I can go to town and achieve maybe three tasks of the five or six I really need to do, before I run out of puff and have to come home. And the other day I cycled 11 km without breaking into a sweat.

There was a time when carrying the heavy pots of water out to the veranda for turkey processing left me puffing and flat for hours, but now I take it in my stride. Last week I picked up a 20 kilo bag of concrete without difficulty- completely impossible a few months ago; when we needed a few more veranda posts for our extension, I was able to help carry the lengths of felled tree out of the forest and then lift that damn blocksplitter to thump some of the bark off.

Not all of it, mind you. The Bear did most of the work. But given that the blocksplitter was where this whole story started, I felt that I'd come full circle nevertheless, just through being able to try.

And it's not just what I can do that's improving. My hair is starting to look like maybe I meant it- maybe I just had a really radical haircut. I mean, Mia Farrow got away with the pixie look- why not me?

And my nails- well, the crappy, yellowed, flaking part is almost up to the top. Another month and I might be able to cut the gross-looking part right off at last, and feel like the poison is out of my system.


All of that has fooled me into thinking I'm nearly out of the woods. But here's the rub: while my physical strength is returning and I'm looking more 'normal' on the surface, my emotional strength is starting to crack.

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

For many women, the emotional fractures happen much earlier. They'll have a meltdown when they're diagnosed (completely appropriate, but I couldn't do it). Or they'll soldier through the diagnosis and chemo but suddenly fall apart before radiotherapy, like my Pink Sister Angie. (Me? No way. The occasional dummy spit, but no real breakdown.)

See, I've got form for emotional stoicism as well as the pain thing. I have a talent for low-level PTSD. I'm the one who copes brilliantly in a crisis, looks after everyone else, and then bursts into completely inappropriate tears a week later when everyone else has forgotten all about it.

But it's not working for me any more. My emotional tolerance is broken. The tiniest bit of stress, and I'm a cot case.

I mean, this last week is a perfect example. I'd finally got to the stage where I felt secure enough in my physical strength to actually plan an outing for today- lunch with the Bear at a favourite pub down at Maclean, on the river.

And then a tradesman working on the extension got his dates screwed up, and instead of coming Monday and Tuesday he was coming today. I would normally be mildly annoyed- wouldn't anyone?- but this time I was inappropriately furious. Angry words flew out of my mouth, soon to be replaced by tears of frustration. Even the Bear ended up crying.

I think he probably had a better handle on what was going on than I did. He certainly wasn't crying about a tardy tradie.

Eventually I resigned myself to rescheduling the lunch date. But when this morning dawned and the tradesman had messed his appointments up again and didn't turn up- and it was too late to go back to Plan A, because other much less exciting plans had been made in its place- suddenly a silly situation that I'd normally swear about a few times and then laugh off became something that knocked me down for the count.

Every time I tried to talk about it I started to cry. I realised I was being slightly ridiculous, but that didn't stop me melting down. And even as I was dripping all over the floor, I was thinking I can't go back to work like this. One little problem and I'll crack up. I'm not better yet. 

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

The Bear isn't better yet, either. We're both running on empty. There's not a drop of emotional energy left in our tanks, and in him it expresses physically. First it was the gastric flu; this mega-fit man is never sick, but last week he was laid low.

And now he's lying beside me in an exhausted coma as I write this. He went to bed pretty much as soon as we got home from running a few chores in town, and he couldn't even get up for dinner.

He never refuses my cooking.

I'm scared that he's broken, too.

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

Maybe this is the breakdown we had to have. At least we're acknowledging to each other that we've got nothing in reserve. But where do we go from here?

Don't suggest therapy. I've had so much counselling in my life that I feel like I don't need it any more- I've got to a stage where I can cope with just about any personal crisis by talking myself through it. Surely that's exactly what this blog is about- talking myself through cancer.

But what happens when coping isn't the answer any more? What happens when the emotional tolerance hits zero?

I suspect the Bear will just hibernate his way through it. Sleep or beer are his answers to everything stressful. (Or, more often, beer and sleep.) It's not so simple for an over-thinker like me. If I let it all go when my emotional tolerance is broken, will I ever put the pieces back together? If I start crying, will I ever stop?

That's a stupid question. Of course I'll stop. The problem is being able to start. Cracking up over little things that aren't even the problem, like a tradesman who isn't here when he said he would be, is just a symptom. I need to crack up over the Freeloader who stole a year of my life, or over being chopped up and poisoned and burned alive, or over the constant threat hanging over my head for the rest of my life.

But I can't do it at will. I'm too used to keeping the wheels spinning.

Maybe there's someone out there who can teach me how not to cope.

Redefining normal, and Ferdinand's new job

Okay, I am over the whining.

It's time to stop wishing everything was the same as it used to be. It's time to stop moaning about it till I bore everybody to tears, including myself. Everything is NOT the same, and won't be.

When I put on my Aunt Annie hat, I know that my complaints and my tears and my anger have been absolutely understandable- a part of the grief process that I had to go through- but they haven't changed a thing. The picture before me is still exactly the same.

And if I don't like looking at it the way it is, then maybe it just needs a new frame. That much I can change.

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

Hammering together a new frame for my circumstances is, of course, a work in progress. I don't kid myself that I'm never again going to curse the day the Freeloader came and stole my peace of mind, my energy, my pretty and symmetrical appearance and my ability to do so many things that I'd always taken for granted.

Of course I will. (Probably tomorrow.)

But honestly, you can't keep on wailing about something that can't be changed without doing yourself further damage. You can't keep on looking on something that's in your face every single day as a negative- not without becoming negative yourself.

So an honest look in the figurative mirror is called for here, because not everything BC (you need to ask? Before cancer, of course) was really so rosy.

Was it?

Tell the truth, Candy.

And if I'm honest with myself- scathingly, brutally so- there are some ways in which my life will be better after this experience.

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

I mean, let's take Ferdinand. Yes, he's still around, my little fishy friend. He's got a new job to do these days, and he's doing it really well; there'll be no flushing him down the loo, or releasing him into the handbasin. Ferdi is an important part of this new frame I'm making.

An aside, before I tell you how Ferdi is making my life better. This came to me while I was riding the bike this morning, and I don't want to lose it to the impermeable mists of chemo brain- so here it is.

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

Why a perfectly rational person invented a talking fish in her stomach during chemotherapy (and still believes in him)

I'm sure some of you think I'm completely loopy, talking about a stomach-dwelling, ailing fish- a complete figment of my imagination- as though he really exists.

Well, too bad if you do. Ferdinand the Fermenting Fish- or, if you must, the concept of Ferdinand the Fermenting Fish- helped me stay sane during chemo like nothing else could.

Does that make me nuts? (Do I look like I care?)

Ferdi. They think we're nuts. Shall we explain?

If I put Ferdinand (or the concept of Ferdinand) on the couch and psychoanalyse him, he smiles serenely back at me and dissembles at once.

You're better at taking care of others than you are at taking care of yourself, he explains. Waving a fin at me, in the absence of a reproachful finger.

So that's where I came in. If you could reframe the whole horror of chemo and convince yourself that you were looking after ME while the poison was screwing up your insides, it was easier to cope with being needy and hard to please and bloody uncomfortable all the time. 

Guilty as charged, Ferdi. It was much easier to look after a poor, dull-scaled, half-dead goldfish in my stomach- or, if you will, in my mind- than to acknowledge that I was being poisoned. Being poisoned is terrifying.

Looking after a sick animal? Easy as. I've always been a frustrated vet.

All hail the power of imagination, which is still part of my picture.

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

And so, to Ferdinand's new job.

I haven't quite got over the whole chemo-screws-up-your-tastebuds thing yet. And strangely, the things that kept Ferdi happy while I was in the middle of being poisoned are often the very things that now make him unhappy.

Anything frankly sweet gives me an immediate injection of aluminium into my mouth. Cake or sweet biscuits? Flavoured milk? Fruit Tingles? Sorry. No can do. Ferdinand says no.

And the sweet things I used to pig out on BC- ice cream, and a thousand varieties of chocolate? Ferdi says no to those, too. The aftertaste simply isn't worth it. The enjoyment is gone.

(He accepts Lindt 70% Cocoa, mind you. It's not so sweet and satisfies us both as an indulgence. And he tolerates a little Tia Maria in his milk, as long as it's just the one.)

Then there's my savoury tooth. Oh, he lets me eat anything I want that's savoury- no problem at all! But when Ferdi says enough, I stop.

This is the woman who used to serve herself as much for dinner as she served her rake-thin, hyperactive partner (the one who works outside All Day and doesn't even own a computer, let alone allow himself to sit in front of one all day).

This is the woman who could never resist a second helping of something delicious, and maybe a third.

This is the woman who, faced with a choice of two delicious options, chose to have both regardless of her actual appetite.

I mean, I had been so out of touch with my actual appetite for so long BC that I constantly confused wanting food with needing food. Food was the answer to everything negative- boredom, sadness, indecision, feeling unloved or lonely, lack of self-esteem- you name it, food stuffed it back in its box. I knew I was doing it, but it had become such a habit that it was well nigh impossible to stop.

But Ferdi doesn't let me do that. He has elected himself Guardian of the Precious Stomach; now that he's comfy again, he's damned if he's going to let me pollute his tank. I find myself doing things that I've never done in my life before, like refusing a sweet biscuit because Ferdi knows it'll make my mouth taste like shit, or (heaven help me!) even throwing away half of the second sushi roll I'd bought for lunch yesterday, because Ferdi said yes, it was very nice, but he'd had enough now.

Unheard of.

See, Ferdi wasn't around when all the bad seeds were sown around my eating habits. He wasn't there when I was a child, when sweet foods were so often a reward and over-indulgence was modelled every day. He wasn't there when I was first hitting puberty, and a rude and insensitive adult told me over and over that I was too fat and should have a breast reduction. And so on. There are many reasons why I've been overweight for most of my life, and they all gained traction inside my head thanks to some outside, negative event.

But Ferdinand is not the least bit influenced by my past; he's not even interested in it. Ferdi lives completely in the now. And now, he doesn't want to feel sick. He doesn't want a nasty taste hanging around. He doesn't want to feel bloated again.

Bless his shiny little scales. I may yet get down to a healthier body size without feeling deprived in any way.

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

Another part of this new frame is a different way of looking at my need to exercise. For a while I've been banging my head against the wall of my slightly addictive and very perfectionist nature; refusing to miss a day on the Wii, but resenting the imposition on my time at some level too. Constantly trying to beat my last high score, and thinking how stupid that was at some level too. Being scared to take a day off, in case I never got back on again because my record wasn't perfect any more.

This time real life intervened, helped along by an awareness of someone else's needs, and saved me from myself. Promising to let the neighbours' dogs out a few times a day, while they worked unusually long hours, helped me out with that one. I realised that walking over there and back was exercise. Cycling over there and back was exercise. Walking with the dogs once I got there was exercise.

I know, I know. All of that is obvious, really, unless like me you have that tendency to try, always, to compete against yourself. But I saw the light. Nailing myself to the Wii for an hour every morning wasn't the only way to keep myself healthy, and the sky wasn't going to fall if I sometimes missed a morning on their godforsaken daily chart, because who the hell cares? The Wii is wonderfully useful, but the stupid chart is just wallpaper around my addiction to perfection.

So part of the new frame is counting everything physical as exercise. Yes, I still get on the Wii most mornings, because the step class is like dancing to warm up (I love dancing) and the hula hooping is boring but it's good for my lymph drainage (yes, I asked Miss Sunshine) and the boxing is fun as well as aerobically strenuous (without being too much for my lymph-challenged arm).

But then I go for a ride on the pushbike, up and down the road with the birds singing and the trees rustling around me, to make up the rest of the hour I need to do to help keep the Freeloader at bay. Or I count what I'm doing around the farm if it's reasonably active, or I count going over and letting the dogs out and walking around with them.

Exercise doesn't have to be a prison. It was me who put the bars up. I need to lighten up and let myself have a life, and that's just a matter of the way I look at things.

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

Mr Lincoln. The best-smelling rose in the world.

And while we're talking about having a life, that's quite enough sitting at the computer for today. I need to go prune the roses- months late, but better late than never.

And that, in my redefined normal, counts as both having a life and exercise.

Fragile.

Life after treatment. Oh, how I love thee.

Or not.

Of course, I use the words 'after treatment' a little loosely. In medical terms, the five years of hormone tablets (which, after less than two weeks, are no doubt deciding how rather than whether to torment me) are still classed as 'treatment'. The possible torments to come are listed on the insert inside the pack, and so I suspect that my frequent nagging headaches, increasing mild joint pain and almost constant awareness that I'm too hot in the middle of winter are less than coincidental; but after just twelve days I won't jump to any conclusions.

(Yet.)

Those are inconveniences, though, compared to the iniquities of being chopped up, poisoned and burned alive. Let's say the most monstrous part of the treatment is over.

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

Life after treatment is full of reality checks. There's this burgeoning hope, when you finally get to the end of surgery, chemo and rads, that life might finally get back to some sort of normal. And daily, or in my case nightly, that gets tapped firmly on the head.

Back in your box. It's never going to be *normal* again.

See, I've been getting a bit of nerve pain in my chest after the radiotherapy. Naturally, good little patient that I am, I decided to self-medicate instead of whining. I went back on the nightly Lyrica for a while. Magic stuff; it kills the night twinges stone dead, and I'm not usually troubled again till mid-afternoon.

Only problem is, it also kills my consciousness stone dead, to the point where on the first night I actually rolled over onto my left side in my sleep and (for once) didn't automatically wake up. Usually I self-regulate on this, because I'm so fucking terrified of losing the function of my arm to lymphoedema. I have this little warning system in my head that goes off like an alarm clock in a tin tray the moment I roll over. (It doesn't make for a good night's sleep, mind you, but it makes for an arm that still works.)

But when you're deep in a drug-induced sleep, you tend to ignore your subconscious and its urgent midnight memos. I got a great night's sleep- right up to 8am, when the throbbing ache in my left upper arm alerted me to the fact that I'd cut off the carefully maintained new lymph pathways on that side of my body for god knows how long, and my arm was starting to fill with fluid.

Panic is probably too mild a term.

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

We got it sorted in the end, with frequent massages and cool cloths (and, yes, the vibrator). The swelling did eventually go down, though it took a couple of days. But since then I've woken every morning in a cold sweat, feeling my arm. It does feel peculiar to me, and I'm not sure if I'm suffering from what one of my Pink Sisters calls 'cancerchondria' or whether I actually do have a lurking problem that's just waiting to leap out at me again.

I check my upper arms against each other every morning now, to see if the left one's swollen. But it's pointless, because I'm like an anorexic who always sees that left arm as fatter than it really is. I sometimes ask the Bear to look for me, because he can see straight still. (Cancerchondriacs can't.)

And sometimes I say nothing and worry silently, because the Bear doesn't need to hear every single thing that's going through my head. One of us going nuts is enough. I rub my arm, though, just in case.

Will it ever end? No, it won't. The reality is that when they took away all the lymph nodes under that arm, they left me with a permanent vulnerability.

Sleep will never be as easy again.

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

It doesn't help that I still have that semi-anaesthetised prickling in my hands and feet, thanks to the chemo. Sometimes the tingling in my fingers extends right up to my wrist, and then I'm sure the lymph is gathering in there and can't get away, even if I haven't accidentally slept on my arm.

I don't rest till it abates. I worry.

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

Of course it's not always like that. Some days, like this morning, I get up feeling okay. My arm looks fine, even to me, and it feels okay too. So I get on with my day as best I can, doing my exercise and then looking for something that will make me feel normal instead of bloody fragile. I'm sick of being fragile. I'm sick of being sick. I want to be better now.

So I clean up the kitchen, or paint the treehouse, or write my blog. Anything to make me feel competent again.

Today I decided I could go and do something useful out in the bush again. It's nine months since I did that. But the treehouse is progressing, the verandas joining it to the house are getting closer to completion, and now we need two more posts for the roof over the stairs. So the Bear and I went out together and fossicked around in the jungle this morning till we found some suitable trees already on the ground, where the storm that nearly killed him had thrown them.

Of course that was months ago, and with all the wet we've had, the lantana had grown over them till it was too treacherous to get near them with the chain saw. So Bugalugs here decided that her first bush job was going to be getting the pruners out and cutting back all that lantana, so the Bear wouldn't trip on it with the chain saw running and accidentally cut his leg off.

See, I live in fear of that happening, because he is such an intractable patient. Coping with the man flu is a barrel of laughs compared to coping with my Bear when he's actually seriously hurt himself. If he ever did cut his leg off, I swear he'd tie his belt around the stump, hop back to the house and smear it with aloe vera while he waited for the kettle to boil so he could have a cuppa.

One time he put an axe into the top of his foot, and it took me six hours to talk him into going to the hospital. SIX HOURS. The doctor was horrified. She looked at me like I'd put the bloody axe in his foot myself. Mind you, by the end of that six hours of arguing with him he was lucky he didn't have a kitchen knife stuck in the other one.

MEN.

So off I went to try to create a bit of a safe zone for Mr Gung Ho. Which was all fine and good, to start with. I was a sensible little cancer patient, I was. Took my time. Rested frequently. Decided that clearing one tree was enough, and the other could wait till tomorrow.

Came back to the house, and discovered that my left arm was so weak I literally couldn't hold a cracker biscuit. I couldn't close my fingers firmly enough. And my wrist was collapsing anyway.

WTF?

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

So it's not just my mind that's fragile. It's my body, too- still. And maybe, always.

That's scary.

All I was doing out there was closing the pruners on each branch, then carrying the pruners in my left hand while I pulled the cut lengths away with my right. It wasn't even hard work. 

It was nothing like what I used to do, carrying whole rounds to be split for firewood, lifting my end of a whole log and carrying it to the house with the Bear, throwing that blocksplitter round like it was child's play.

It wasn't even hard work.

But by the time I'd done it for half an hour, my left arm was basically useless.

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

So it's looking like my farm work will never look the same again, either. I won't be able to do what I used to do.

I try not to think about how that might translate to working with children. I never had to think twice about it before; if a child was upset, most of the time I'd end up sweeping them up in my arms and sitting them on my left hip, holding them there with my now-compromised left arm, talking quietly to them until the sheer closeness comforted them.

How the hell is that going to work now?

Don't think about it yet. Maybe it'll improve.

Squadron of pigs cleared for takeoff.

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

The Facebook meme that greeted me when
I gave up trying to hold my cracker and went
online for some comfort...

Maybe another part of my life is over. Maybe I just have to accept that I'm too fragile now to do even moderately heavy work. Maybe I have to redefine myself yet again.

I wouldn't be the first to have to try. I'm not the only one who's going to discover their limitations when the treatment's over.

Maybe I'd better just go back to music and words, and realise how fragile I am.

Sting said it best. He might have been writing about my life here in the Bungy, post-cancer. Go on, have a listen. It's a beautiful clip.

And on and on the rain will fall
like tears from a star, like tears from a star
and on and on the rain will say
how fragile we are... how fragile we are...

Watching my life go by

It's hard, this recuperation business. I'm caught between two devils- crushing fatigue, and a maddening sense of being useless. I'm constantly fighting the dual meanings of 'invalid'.

I start the day fully aware that I'm the noun form. I am, indeed, an invalid. The exhaustion, regardless of how many hours I slept, leaves me in no doubt. I have a terrible time waking each morning. I want nothing more than to stay curled warmly under the doona for another ten minutes, or hour, or- what the hell- why not all day? That's the legacy of radiotherapy- an enduring, alluring coma-state.

But I know that if I don't get up, I won't ever get to the compulsory 'exercise' segment of my day; I'll lose the will to care about staying alive. And then I'll descend into the depression that's just out there, on the edges of my consciousness, waiting for me to slip up. You're just watching your life go by, it whispers. Why bother?

So up I get. Onto the Wii, working out as actively as the tightening radiation burns and my fear of lymphoedema will allow for an hour or so. That much of my day is scheduled, valid, necessary.

Then, after my morning Tablet Time (mineral and vitamin supplements: all valid for survival purposes), begins the 'what shall I eat' portion of the entertainment. Ideally, I need to lose a bit of excess avoirdupois to help keep the Freeloader at bay for as long as possible. For all that people tell me I look fine, I know that I'm carrying unhelpful lard. My best chance of sloughing it is to be careful what I put in while I'm committed to working out.

So I might grab some fruit. Maybe some yoghurt, though since chemo anything that's vaguely processed and the least bit sweet leaves a vile metallic after-taste in my mouth. (Shh. I can't bear plain yoghurt. Yuk. Yukitty-yuk-yuk-yuk. And don't preach carbs at me, either- I'm not a fan of the heavy breakfast. Can't do it. I have lots of food-related 'can't do's since chemo.)

And now it's maybe 10am. My activities thus far have been all in the interests of staying alive, and I feel like I don't even know my own name. I don't recognise this person who can't get up and, when she does, concentrates exclusively on exercise and diet. Once upon a time, I used to spring out of bed when the alarm went off, dress, grab something or nothing to eat- who cares?- and fly happily out the door to be useful to someone. Once, to a full-time job nurturing the next generation of musicians. Lately, to fill a yawning gap in some poor director's childcare roster at a moment's notice. To reassure parents, smiling, that their children are well looked after. More than all that, to strive each day to make a small child's world a better place.

That's where the point of my current existence starts to seem questionable. I start to feel the force of the adjective: invalid. For the rest of the day, there's a vacuum awaiting me. Nobody expects anything of me. I am not helping anyone. Nobody has a better day because I was there.

I am leading an invalid existence. Pronounce it as you will.

Unless I have a staying-alive appointment, there's nowhere I have to be. There's plenty to do around the house, sure, but I know that anything I start may be suddenly curtailed by the onset of another bout of radiotherapy-exhaustion. I know that by 3pm or so, I'll just want to put my head down again and sleep, and that will be brought forward by any heavy work.

The old me I'm searching for needs more than that. I've never been satisfied to be a housewife. I feel a need to make my existence felt in that small window of alertness, and sweeping the floor or doing the dishes just doesn't cut it in my internal measurement system. Neither does recreation; I'm bored to death with books and magazines and puzzles and DVDs. I just want to feel like me again.

I want to matter, the way I used to.

But mostly, I don't have the brainpower to do it anyway, and I certainly don't have the physical strength. I have to be content with dropping the odd comment into a parenting thread on Facebook, and hoping that it matters to someone. Chatting to my Early Childhood colleagues, and hoping that I help someone straighten out a problem that's troubling them.

Writing the odd post here on the Freeloader, and hoping it makes someone feel less alone.

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

At some level, I realise I'm just battling a label that I don't like. Somewhere in my past, I had lazy thrown at me. More than once. Many times. It wasn't fair then, and it's not fair now: I know that. But our psyches are peculiarly unkind when it comes to letting go of baggage- especially when we're tired. Especially when we've just been through eight months of hell.

Lying around chatting on Facebook, reading novels, doing Sudokus- it all feels lazy to me. Lazy should be my friend right now. Lazy should be helping me get better. But all it's doing is sitting on my left shoulder, whispering poison in my ear. Get up. Be useful. You're wasting time again.

It's all nonsense. My brain knows that. But my subconscious is a different matter.

My subconscious made me stop outside the childcare centre the other day, and consider going in to tell them I was available to work again. My brain put paid to that in thirty seconds flat, thank heavens. Turning up for work and having to go home again halfway through a shift would hardly enhance my reputation. My brain knows that I only have half a day in me at most, not to mention the risk of some dear child elbowing me in the radiated chest and causing me untold agony.

So I sit here trying to convince myself that it's okay to just rest. I sit here watching my life go by, minute by dragging minute. I try to remember how I felt during chemo, when it was so hard to believe that it would ever end. This too will end: my brain knows that.

My subconscious is a different matter.