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.