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'.
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.
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.