What BRCA 'Vivors Really, Really Want After Surgery

Previvors and survivors mostly travel different journeys, except for parts thereof. For almost all ‘vivors, surgery means recovery, and recovery means we’re not the same gals you’ve come to know and love — at least not right away. Things go ouch. Going to the bathroom loses its simplicity. Innocent bodily moves can produce agony that feels like the bite of a giant, sharp-toothed beast.

None of this is fun for us; it’s even less fun for you having to witness it.

So sometimes we’d prefer you didn’t. Really. The following compendium follows hard firsthand experience. Though it may sound harsh, ultimately it’s meant to keep the peace, with healing and wholeness for all involved:

We want to be left the hell alone… sometimes. Hear us when we say we’re exhausted and don’t want company. Don’t sit by our bedside in suspenseful silence, wait for us to perform we know not what: a scream of pain, a wail of remorse, an aria of terror. Please bring a book or some knitting or your iPhone so we can’t feel you staring a hole through us. Then take those items into another room and wait for us to call you.

Want to be a true hero? Go find a cure for the monster that caused all this mess.

But if we allow you near us, we expect you to go the distance. Don’t say you’ll be here on Monday to spend a few days helping out, then text two days before with “my kid ate my homework, my dog has soccer practice on Sunday night and I’ll see you at 11 on Monday, but then I have to get back to cultivating my prize rutabagas by 3.” It’s a lot less trouble to expect you for a few days than for one or two.

Just stay home until your schedule stops being our problem.

If we say you’re doing something wrong, make it right. One well-meaning individual got overly-cautious behind the wheel and hit the brakes every 300 yards on gingerly drives to post-surgical doctor’s appointments, then castigated me when I requested a smoother ride. My complaint wasn’t a personal critique: I was in pain from all those driver-imposed speed bumps.

When we say ouch… stop.

We don’t care if you are our mother, our grandmother or our spiritual leader: if you haven’t gone through this yourself, you don’t have a clue. Just because I’ve recently lost my ovaries doesn’t mean you get to suggest hormone therapy when I express frustration. I’m not having a mood swing: my body temperature is re-regulating itself, and I fucking hurt. Furthermore, don’t judge me on my next move after double mastectomy: reconstruction or going flat, it’s my call. I really don’t care what your co-worker went through or how it impacted her dating life.

These are my boobs, not hers.

We want a judgment-free pain path. Whether or not we want to temporarily give up our bodies and souls to the sweet embrace of Nurse Opioid is totally up to us — nobody else. Likewise, if we choose to forego the pain meds in favor of a quicker road to better bowel plumbing — that’s our call, too. Whatever improves the individual patient is key.

As my grandmother used to say, “Better is better.”

We want quiescently frozen things. I promise you this. Even if we don’t know it. Is our appetite a bit peckish? Probably. Do we need to up our fluid intake? Most definitely. Please don’t coax us to eat a lot of solids — we can always fill up when we want to, but emptying out when we’ve had too much is decidedly unpleasant. Popsicles, snow cones, koolpops, gelato, sorbet, finely crushed ice, gazpacho — these will refresh us, relax us, even invigorate us.

The operative word is: chill.

We want you to know we love you, but some blockers beyond our control are getting in the way. This is temporary. Pain, anxiety, a recovery that doesn’t happen as fast as we want it to, and our general post-surgical head games can play havoc with our ability to filter interactions, even with those dearest to us. I tortured myself, at least until I passed out into temporary oblivion because having my children around after my hysterectomy hurt me physically.

I am still deeply grateful to those who helped me most by helping my kids, taking them on outings, spending time with them, listening to them vent, and otherwise allowing me to rest and heal so I could be with my babies sooner rather than later — or, God forbid, not at all.

The better we feel, the sooner we’ll return to Dr. Jekyllville. We might even create some funny wisecracks along the way. But trust me, the girl you once knew isn’t going to be the same as she was before. She’s been to Planet Pain and back, smacking into every asteroid along the path, and she’s got invisible but indelible souvenirs.

What doesn’t kill you can still hurt like hell. Still, strength and compassion can manifest as the blessings of a skinned reproductive system. And what I plan to do with my gifts is to use them to help you if you ever need them.

But I pray you never do.

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Thinkstock photo by Ildo Frazao