Wednesday, March 12, 2014

A matter of trust

There have been times during this trying period of my life when I've felt truly lucky. Weird, right?

Mostly that's when I look around me at other women dealing with the same shit, but without the same medical team. You have to be able to put your faith in your team. Without a team you can trust, you live in constant anxiety.

Are they really as good as they make themselves out to be? 

Have they chosen the right treatments for me? 

Do they actually give a rat's arse what happens to me, or am I just another random digit in their statistics?

And while some patients fret and tremble, I've been fortunate enough to add yet another quietly competent gun to my locker. The same day that I was able to slot into a cancellation and see my personal therapist, I'd been heading up the coast anyway; finally the stars aligned, and an expert had time to talk to me about testing my genes for BRCA faults.

Some people can exude busy-ness and competence while strolling languidly down the corridor. Such was Professor Darkhorse. He passed me on his way back from lunch as I sat stabbing a trembling finger at my new and mystifying SmartPhone, desperately trying to distract myself from thinking about what a genetic test might reveal, and I knew immediately that this was my man.

Yes, he explained quietly when my turn came, my family history definitely qualified me for a free genetic test. Twice over, actually; the crucial number in NSW is a 10% chance of having a dodgy gene, based on how many close family members have succumbed early to breast or ovarian cancer. My chances of having a faulty bit of wiring in the system, he told me, were over 20%. I'd even have qualified in Queensland, where the parameters are far less generous.

A one-in-five chance of having one of the BRCA genes wasn't actually something that filled my heart with joy. I don't actually want a positive result. Who would? I want a negative result.

But as Darkhorse so clearly and patiently explained, there's no such thing as a negative result.


I could get a positive result- oh yes. That much is clear-cut, and that would be a signpost for my medical team to tell them where we need to go next to keep me alive.

Enter masked man with scalpel, stage right. Weeping from the gallery.

I could also get a result which shows that I don't have the BRCA 1 or 2 genes, but they don't call it 'negative'. Chances are that, with that sort of family history, I still have a faulty gene- but it's one that hasn't been identified yet. 'Inconclusive' is about as close to negative as I can hope to get.

Sheathe scalpel. Enter roulette wheel.

And then I could get the medical equivalent of 'Hmm, that's odd.' Which translates as having some minor genetic peculiarity picked up which doesn't rate as weird enough to be a mutation, but which will be noted in the statistics and kept on record; if enough people with breast cancer turn out to have that minor peculiarity as time goes on, it might be another risk marker to add to the BRCA genes.

Enter Paranoia, hysterical.

So. Qualifying for the free test is not really such great news. It could herald some hard decisions, or continual nagging uncertainty.


This is what will happen if my test results come back positive.

The other breast comes off.

Exeunt nipple sensitivity. 

The ovaries come out.

Enter madwoman, screaming at shadows.

My reconstruction becomes significantly more complex. Simple mathematics: one stomach flap (ironically, now far less abundant thanks to my cancer-driven healthy living program) divided by two new breast mounds just isn't going to equal two D-cups.

Enter silicone implants; exeunt stomach-sleep. Further weeping from gallery.

Did I mention that cancer sucks?

I have to wait six to eight weeks for the results. I think I shall just try to forget it ever happened. Wish me luck with that.


In better news, I saw Dr Goodguy yesterday for my six monthly checkup. He was again touchingly pleased to see me looking so well, and quickly gave me an uncompromisingly clean bill of health for the bomb site and my dodgy armpit full of scar tissue.

(Scar tissue can feel distressingly like a lump, to an amateur.)

"And your mammogram and ultrasound came back absolutely fine," he added.

(So those dots I saw when I craned my neck to look at the screen weren't new Freeloader beds after all. They looked the same to me...)

It was all something of a relief; mostly I can get my head involved with other things and forget the nagging worries. But sometimes you wake up at 3am with something aching, and your brain goes nuts.

I'd come to his office straight from my appointment with Miss Sunshine the lymphoedema physio, and she'd gone most of the way towards putting my mind at rest about the nagging pain around my protruding ribs on the left side.

Yeah, protruding. They stick out. You take the weight of a very large breast off your rib cage, and it goes whoopee! Let's party! and expands to the point where it's pulling the hell out of the muscles that keep it in place- and to top all that, you keep bumping it on things. Not to mention the agony of wearing a bra on ribs with no flesh protecting them.

And then you realise it's hurting there, and your brain starts misbehaving again.

"There's been so much damage there from the surgery and radiotherapy," said Sunshine comfortingly. "You'll have all sorts of muscular and nerve pain happening."

And proceeded to give me a somewhat agonising but much-needed work-over on all the dodgy bits. My ribs. The back of my upper arm. (Wow, did she find a sore spot in there; there was a cord so tight we could both feel it twanging every time she rubbed her firm torturer's fingers over it.) The middle of my upper back, and under my shoulder blade. Up the left side of my neck. Into the back of my shoulder joint.

All of it is directly traceable to the hell inflicted on my upper left side over the last year and a half. Fixing breast cancer's not as simple as just chopping off a boob, replacing it with a lump of silicone and Bob's your uncle, folks. My shoulder area's screwed for life. Every time I think I'm through it and start forgetting to do my exercises and stretches, it bites me. Sleeping comfortably all night is a thing of the past. I still can't rest on that side or I suffer all the next day in bloody agony.

Shut up, Candy. Whining doesn't help.


And hallelujah, at the end of my surgeon's check-up Dr Goodguy finally scheduled in some time to write me a referral to a plastic surgeon. He's been putting me off about reconstruction for a good sixteen months now, every time saying that we needed to let my chest recover from treatment to get the best result.

My god that time went slowly. 

My relief must have been as palpable as my remaining breast.

"I'm so tired of my sarong falling down," I offered wryly, leaving out the bit about bursting into tears all over again every time it happens.

His face fell.

"I tried to leave you with two," he said. And I thought, my god, he actually remembers and cares. And felt terrible for even bringing it up.

"It wasn't to be," I said. Trying to make up ground. "Better to have it off and be sure."

Which is true; but clearly Dr Goodguy was just as proud of his skilful effort to reconstruct my boob after cutting the cancer out of it as I was impressed by his expertise.

Damn you, Freeloader. Did I mention you suck?


I am just so damn lucky to have him as my surgeon. He's referred me to a plastic surgeon I've never heard of in my life, rather than the one I'd set my heart on, but if Dr Goodguy says that this fellow's at the cutting edge of new procedures and that's where he wants me to go, than that's where I'm going.

If they could bottle trust and prescribe it for breast cancer patients, we'd all feel so much safer. I hear horror stories about women who have bad experiences with their doctors and end up lacking trust in their medical team. Some of them do themselves all sorts of mischief courtesy of Dr Google and 'natural remedies', or get taken for a ride financially by some charlatan who reckons they can cure cancer with the left eyeball of a frog extracted by moonlight and juiced with the blood of a rabid leech <ching!>. Or something. And then the poor women find they're even sicker than when they started, as well as broke and feeling stupid. It's tragic.

Not me- my first stop after diagnosis was Dr Goodguy, and I trust him implicitly. If I do end up having to have a double reconstruction, then I know I'll be going to a plastics man who's going to somehow make it all work for me rather than creating a bomb in my chest. Because that's the sort of doctor Dr Goodguy is. He actually does care about that stuff- women's self-image, and the importance of the patient being as happy as she possibly can be in the middle of this crock of shit. So I know he won't be sending me to some narcissistic shark who thinks that my next surgery is just a way to put his kids through private school.

And that, my friends, most definitely does NOT suck.

Friday, March 7, 2014

Ground Control to Major Tom

Those of you who've never experienced a cancer diagnosis may now be suffering under the misapprehension that we've reached 'mission accomplished' here. In October 2012 I was launched into a dangerous orbit whence I might not return. But here I am, in March 2014, back on Earth at the end of my (obvious) treatment and apparently safe and sound.

"You're looking amazing!", people say to me. "You look great!"

Am I? Yeah, I guess so...

And I'm reminded of the startling last verse of that Bowie song-

Ground Control to Major Tom,
Your circuit's dead- is there something wrong?
Can you hear me, Major Tom? Can you hear me, Major Tom?
Can you hear me, Major Tom? Can you...

....Here am I floating in my tin can,

Far above the moon,
Planet Earth is blue and there's nothing I can do...


It separates you from the rest of the human race forever, that cancer diagnosis. You're forever orbiting the knowledge that maybe, somewhere in the machine that is your body, there's a faulty piece of circuit just waiting to melt down and destroy you.

It can happen at any time. Recently I met a woman who'd been diagnosed with secondaries an unbelievable 21 years after she was given the all-clear (or to use a more accurate medical term, 'no evidence of disease'). Another woman returned from her celebratory cruise to mark 10 years' NED, only to find that the monster was almost certainly back.

Planet Earth is blue and there's nothing I can do...


So you won't find me coming out with any smug assurances that I've beaten cancer or (as is the popular vernacular in BC circles) I've kicked its arse. Oh no. Fighting the Freeloader is a job for life. It's just that these days, it mostly manifests as a psychological battle to stop turning your head to look at the thing that's always on the periphery of your vision.

Get thee behind me, Planet Earth.


Coincidentally, Ground Control to Major Tom is a long-standing code between my Bear and me which started with my considered choice of home number ringtone years ago. Of course, I usually take the role of Tom, flying off to town to shop or to attend yet another follow-up appointment; the Bear would rather insert bamboo slivers under his fingernails than go to town. When the Bowie song starts issuing from my bag, I pick up the call with Major Tom. He responds with Ground Control.

We laugh a lot.

Though less so lately.

But finally we have some progress on the home front, though I feel a little like I've been run over by the space shuttle as a result. I knew that tearing my Bear away from home to attend some post-cancer couples' counselling with our social worker (who did, eventually, call back) was always going to be a challenge. If I've been quiet, it's been from emotional exhaustion. It is damn hard work getting around a man's mental blocks. They're so good at building walls out of them. (Especially if anyone suggests they need help.)

Pass the wrecking ball.

Anyway, we were lucky. We found someone who 'gets' him, who doesn't try to make him sit in a chair in an office to talk about his deepest feelings. So far we've sat on a brick wall under a tree for one session, and sat on the ricketty little seating riser at the oval for another. Wind in our hair, sun on our arms. Birds singing.

And it's working. Slowly. Like pulling teeth without anaesthetic is working to get rid of an aching mouthful of disaster so you don't die of blood poisoning.

Except we pull them, and he goes home and puts the teeth back in again because that's what he's used to, and I spend some time pulling them out again. Ouch. Repeat ad lib for two weeks till the next appointment.

I'm tired. But it's working.


The need for this sort of agonising, exhausting emotional work as a side effect of your diagnosis and treatment is just another thing they don't warn you about. But the more I talk to the other women in my new support group, the more I see that it's a common thread. We've all been screwed over mentally.

The ones who've already done a fair bit of work on themselves are coping better than the ones who are still stuck in abusive relationships, or who have serious self-esteem issues left over from childhood, or who have given their all to others all their life and never really stopped to find themselves. Me? I've done a lot of work on myself. A lot. I've had extended therapy with three different practitioners through my life, and I've spent hours reflecting on myself and my choices. If I'm coping well with the curve ball called cancer, that's why.

But still it hasn't been enough to allow me to cope with this on my own. It took weeks (my therapist is ridiculously busy because she's bloody good), but finally I managed to get an appointment to get my own head straightened out too.

Naturally, the first thing she wanted to know was what I needed from her. And I said, "I need some support. I join all these support groups, and because I'm good at it I end up doing a lot of the supporting myself, and I realised the other day that- well, wait a minute, that wasn't why I joined."

(And it's not because people don't try to support me, I might say. But I'm acutely aware of the effect my own angst has on those around me. I self-censor. All. The. Time.)

"What does support look like to you?" she asked.

"Being able to just cry," I said, and did so.

That's where therapy is so good. I don't have to give a rat's arse about how my tears make the therapist feel. It's her job to receive them. And so I can just cry. Not explain. Not censor. Not rationalise and argue myself out of feeling what I'm feeling.

Just cry.

Everyone should have a therapist after something like this.


Of course, I didn't just cry for the whole hour. A sentence that's come out of my mouth a few times lately is I don't know who I am any more. Cancer seems to have changed not only my body, but my life path. Getting back to where I was seems impossible.

What is my computer addiction all about? (Certainly it's not good for my relationship. See couples' counselling.)

Am I no longer a person who works with children? (What a damned waste that is. See the workplace that never calls.)

Have I become a person whose sole mission is to help other people with cancer? (See computer addiction. Is this the only way I'll ever feel useful again?)

And a few startling things emerged, as they are wont to do when I have therapy.

I am too big for my previous job. I need to expand my job description to use my talents in a satisfying way.

It's not that I'm not working because of cancer. I AM working- I'm helping people for hours every day with their cancer experience or with their questions about their children. It's just that I've tried to leave money out of the equation, and that's why I'm not feeling valued.

I am investing energy in staying small.


Needless to say, that therapy session will not be my last. I need to address this problem of feeling like I'm on the work scrapheap, despite having so much left to give and giving it wherever I can.

See, without serious, big work to occupy my brain, it's awfully hard for my eye not to be drawn back to that blue spinning planet called cancer. The one that's always there, that I can do nothing about. So that's the current mission: redefine what I do to make it fit who I am and meet my needs. It's going to be a challenge.

Ground Control to Major Tom. Prepare for liftoff.