Saturday, July 6, 2013


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.


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.


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.



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...


  1. Oh Candy, you say so much of what I feel and don't say to anyone, thank you so much. I am having trouble with lymphoedema and I'm sick of people asking me when I can lift heavy objects (like people!), or when it will be better. How should I know? Aarrgghh!!!
    Or they tell me to stop what I'm doing, they'll do it for me, and then I feel like an invalid. Vicious circle me thinks!!!
    Keep up the great work helping verbalise what others think or feel.

    1. Yep- no win situation. It'll be bad enough trying to lift children- can't imagine lifting adults. :(

      And thanks for the encouragement.