Tuesday, May 13, 2014

A gypsy, a ghost and the function of swear words

Every family has its personal volume of mythology- the book of stories passed from generation to generation, handed down like Chinese whispers till they become some sort of mutant truth. In the end nobody's quite sure what was part of an original tale and what was a verbal embroidery by some canny descendant, a little baroque trill designed to catch the listener's ear.

Such is the story of my mother and the gypsy. I remember her telling someone- friend or relative? I can't remember- over the top of my head that she'd visited the fortune teller's tent at some country fair when she was a young woman, and everything the gypsy had said to her on reading her palm had come true.

She was very clear on that. Everything.

I was very young, mind you; my memory may be flawed. Perhaps it wasn't a country fair. Perhaps other parts of the story have been embellished by time. But I do remember her spreading her fingers out to scrunch up the side of her hand, showing the two little lines that represent my brother and me- the two living children she was yet to bear back then.

This I also remember: after my mother died, her brother's wife- one of her closest friends- told me that all her life, my mother had been terrified of dying of cancer. Twenty seven years later, I put two and two together and wonder if that gypsy was guilty of the sin of too much information.

My friend Vi, if you recall, read my palm a few weeks before I was diagnosed and told me I was about to bear a huge burden; she saw it crossing my life line. "But the line keeps going," she assured me. "You'll get through it."

Perhaps my mother's life line stopped at that crossing of the creases. Who knows? I shan't pretend it's truth. It's extrapolation. But something had put the fear of death by cancer into her head, long before her own mother succumbed to the silent tumour in her breast.

And when I ask Vi why she doesn't read palms and tarot for a living, given that she seems to have a gift for such things, she replies "I only see the bad stuff." What, indeed, is the point of telling people about the bad, inevitable stuff ahead of time? What do you do if you see a person's death? Do you lie?

Yes, you do. Fuck you, gypsy. I don't care how right you were.

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I reflect on all this now, as the shock waves from my BRCA2 result finally hit me. The faulty gene that my grandmother and my mother (and perhaps others before them) carried and passed on to me was discovered a mere five years after my mother died of ovarian cancer- that sneakiest of ticking time bombs, the one that gives only the vaguest symptoms until it's far too far advanced to be curable.

The time frame seems unbearably cruel to me as I reflect on her last few years, repeatedly visiting the doctor with terror in her eyes, repeatedly being rebuffed as a hysterical woman with psychosomatic symptoms. The research must already have been in the pipeline. Five years later, and somebody surely would have smelled a rat.

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So in the end it was my mother's ghost that reduced me to tears over my diagnosis. I could never bear injustice. To think that she had that goddamned gypsy's prediction jammed in her consciousness all her life, that when the vague symptoms hit she fought so hard to be heard but nobody was listening, that she was right all the time, that there was a scientific explanation right there but nobody at the coal face knew-

-yes, that makes me cry.

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The tears have been slow to surface, and as ever, they don't seem to be about me. Anger and fear are a different matter. I woke up a few mornings after I wrote my last blog post thinking every cell in my body has a mistake in it.

It wasn't a particularly palatable thought, and I didn't really know what to do with it. By evening my preferred coping mechanism had chipped in, and I replaced my Facebook profile picture with a mutant cow.

As you do.

Naturally, cancerchondria arrived in the wake of this realisation, as night follows day. The sudden painful twinge in my right armpit- the good armpit- while I was doing star jumps as part of my exercise routine was enough to throw me back into shitsville. I remembered having twinges in the left breast and armpit before I was diagnosed; I passed them off as nothing, because they went away very quickly. Until next time. Now I realise my body was probably trying to alert me to the invader.

Was there an invader on the right too? Did my recent clear mammogram miss something in my armpit? Was the Freeloader laughing at me again?

Naturally, it's all bollocks. I had an ultrasound as well as a mammogram, and it was very bloody thorough. And hello, I've had enough chemo to kill a black dog. Dr Mellow went over me very thoroughly indeed at our appointment last week- it seems that a BRCA+ diagnosis comes with a thorough pelvic as well as breast palpation- and declared me to be in great shape and looking astoundingly well.

But you wonder. Just for that moment, you wonder, and it can send you nuts if you let it.

Then there's the pending surgery. My discomfort with the idea of having a lat dorsi reconstruction has ebbed and flowed. Some days, I'm confident; trust the doctors, they've done you proud so far. Other days, the voice in my head screams trust your gut- you know you regret it when you don't.

I've never been good with decisions unless I make them instantly, based on my gut feeling. Otherwise I go to and fro, balancing, balancing, balancing. Seeing both sides. Vacillation has become my personal art form. And this time it's not just a wavering that will eventually settle one way or the other- I feel totally bamboozled, because it seems like my choices are no boobs at all or massive invasive surgery on my upper body, with relocation of two major muscles.

And there's pressure to decide, which never helps. The time bombs are ticking.

Time for a second opinion, methinks. And maybe even a third. I expect Dr Goodguy is enough of a good guy to give me another referral. It's my right, I know, but it still makes me feel bad, to question his choice. I'm sure Dr Mattel is a very fine technician...

...but then, there's that gut feeling.

It makes me angry, to be in this no-win place. It makes me infinitely sad, that my Bear has to put up with my constant moodiness, that he'll have to live with the physical and emotional fallout from whatever reconstruction decision I eventually make.

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So what do you do with all that sadness and anger? There's only so much therapy a girl can afford, and it's not like it makes the daily ramifications go away.

Maybe you swear a lot. I know I do. So many of my friends are doing it tough right now, and we're all hurting for each other, and because we've been through the mill we've learned what not to say. Sometimes swearing is all we have left to express what we do need to say, which is pretty much reduced to how the fuck is this fair?

Sometimes the only empathy needed is a well-chosen swear word.

One friend has just discovered that her hair loss after chemo is permanent. My heart absolutely breaks for this gorgeous, smart, funny woman. But once it's confirmed, you don't say to an unwillingly bald woman who used to have stunning, flowing, long blonde locks, you're still beautiful to me. You don't say you're always beautiful inside. You don't offer up solutions like hats, wigs, hair transplants, head shaves, tattoos and acceptance as though that's some sort of answer to her loss and grief and anger. You don't tell her to be grateful she's still there for her kids.

What is there to say to her but shit, shit, SHIT.

Another friend's much-loved partner of 22 years collapsed and died a mere five days after he was diagnosed with terminal cancer. You could have a few months, the specialist had told them just the day before.

I didn't tell her it was all for the best. I didn't reassure her that he was in a better place, or express relief that he didn't suffer for long, or any of that mealy-mouthed, well-intentioned bullshit. She texted me that he was suddenly and unexpectedly dead, and I texted back fuck.

Because that's what that word is for.

That, of course, is not all I said, but I'll spare you the blasphemy. We've known each other over forty years. We know that the best way to offend either of us is not with a swear word, but with a platitude.

And so, here's the thing: the doctors who ignored my mother's symptoms were a pack of arseholes. Being BRCA2+ is another serve of shit. And Facebook needs a button that says