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.


  1. Candy , you nailed it 100 x over in this post.
    No wonder I can't wear a bra = besides still having my port. I'll be going for a record with that now.

    I am struggling with these questions -
    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?

    My surgeon is a bit pipped I am asking for an OPINION from a radiation oncologist. I trust him but I have to be 100% confident - it is my life at stake.

    PS - MY brain (well after my bladder wakes it up) goes nuts every night near on 2.30am !

    1. Let your surgeon be pipped. Smile sweetly and do what you need to do.