I’m posting this as much so I can refer to it when things are getting me down, as for any other reason. It really does feel like this most of the time and in a very weird way, it’s heartening to know that it’s not just me. Of course, I am grateful to be alive or I wouldn’t be putting up with the shit that is ongoing treatment, but recovery is not being back to normal. I now live with chronic pain and discomfort, as well as the fear of recurrence and new things to make life uncomfortable. If you’re reading this, it’s not a whingefest and I don’t expect anything other than awareness that this is what it’s like. (And I doubt very much it’s only breast cancer survivors who feel this way but that’s all I can talk about.)
The Secret Suckiness Of Life After Breast Cancer
Now that I’m two years past chemo and have a full-ish head of hair, people no longer tilt their heads and make meaningful eye contact when they ask how I’m doing. They pose the question casually, as they would to anyone else, and we exchange the usual pleasantries. Then, maybe, they lower their voice or touch my arm and ask how I’m really doing.
How much truth can I slip in before they change the subject? Should I try to be funny? I usually go with the gratitude-but-challenges script they expect, then see if they’ll grant me the space to get real. “I’m happy to be alive, of course, but my current life compared to my old one sucks [note frown]. I mean, I’m still dealing with a lot of side effects [note eyes wandering] — but don’t worry, nothing I can’t solve by smiling a lot!”
Complaining is always awkward, but complaining about cancer gets you more side-eye than a priest at a pro-choice rally. People prefer to hear about drama they can help with, like decoding texts from a toxic ex. Scary diseases should be avoided in polite conversation, because, well, we’d all like to avoid them, but this goes doubly if you’re a cancer survivor: You’ve survived, after all.
Nevertheless, I persist.
“So, I take this one pill called tamoxifen to prevent another recurrence, and a dozen more pills to deal with the side effects of the tamoxifen, but now the sleeping pill isn’t working as well and I’ve tried all the other options, so…”
“Better tired than dead,” they’ll tell me. They’re right, and indeed I am grateful to still be here. Yet my life as it was, the one I envisioned and built and paid my dues for, is gone and not coming back. In my new life I have a fraction of my old energy, chronic nausea, no libido, uncontrollable irritability taking its toll on my husband and kids, osteoporosis limiting my outdoor activities, a beard on my face, and a brain so foggy… I forgot what I was going to say.
Oh, yeah: that I’m grieving. Grieving now, almost three years later, because I had to get through chemo and targeted therapy and multiple surgeries first, then I spent two years experimenting with how best to manage on this brutal drug, until I finally realized that any managing I did — of the meds as well as the scars and trauma of cancer itself — wasn’t going to bring me back to my old life. I’d just be managing this one for the duration. Which seems like the kind of thing you ought be able to vent about.
In my old life, I was a full-time writer. Now, even with medication to help me focus, I’m lucky to eek out an article a week. I’ve taken up photography to fill in the gaps, and my husband has a stable job keeping us afloat; so I’m not whining. But after years of calling myself a journalist, who am I now? With all these aches and pains and insomnia, can I reinvent myself before it’s time to retire? And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?
Because to survive breast cancer, the marketing gods will have us believe, is to thrive! Ever visit a breast-cancer website? More smiles than a dentist’s office. The women in colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they’ve just returned from a wellness resort. There’s no fear of recurrence in their eyes, no hint of any long-term issues or complications. This airbrushed reality is held over the rest of us, setting us up to sound bitter or lazy if we aren’t 100% happy as soon as we’ve “beat” the disease (and what does that mean, exactly?).
For me, it can mean the world is no longer looking at me, with my asymmetrical cleavage and chin hair and refusal to pretend that post-cancer life is all pink and pretty. It means I lost friends who couldn’t take the heat, and I struggle to find time for the good ones because I absolutely must go to bed early, even just to toss and turn, if I want any hope of functioning the next day.
Since I found my first lump in 2010 (there were a total of three between then and my bilateral mastectomy in 2015), I have been lucky — a word I utterly hate in this context — to live near top-notch cancer hospitals and to nab appointments with pioneers in the field (calling moments after somebody else cancelled type of luck, hence my willingness to call it such). I’ve had no serious complications, no infections, no procedures that didn’t yield the expected results, no allergic reactions, no fertility concerns (I already had kids), and none of the potential side effects at which you can’t throw yet another drug. My point being that even with such a fortuitous run-in with it, breast cancer savages much more than breasts.
I bear multiple scars in every quadrant of my body. My brain is soup (except when a new ache or itch might be cancer again, then I’m lucid as hell). My liver protests the slightest sip of a cocktail. I can’t Rollerblade with my children because I fear shattering my bones if I fall. And this is just the wreckage from surgery and chemo. Hormone therapy, which according to the latest research I should endure for 10 years, piles on the insults: stiffening my joints, cramping my muscles, wrinkling my skin, making sex painful (if I’m even in the mood) (and by the way my fake boobs are numb), and growing hair on my cheeks and chin. Meanwhile, hair’s still missing from my brows and lashes.
My biggest challenge, though, is staying sane under the pressure to keep all this a secret.. Without estrogen and progesterone, I’m a miserable, volatile beast. One anti-depressant — out of six that I’ve tried — takes the edge off, barely (and causes a tertiary set of problems, but I give up). I don’t recognize myself in the mirror, especially if I’m naked, but I don’t feel like myself anymore to begin with, so I guess that works. Or would work, if I lived in my own private universe. In the real world it takes a toll on everybody around me. My husband has lost the woman he married. My daughters are relearning how to get what they want from me, which sounds cute but is actually heartbreaking.
A few nights ago my car was broken into — no big deal, but I teared up when I realized my favorite sunglasses were gone: an oversized pair that I relied on through chemo to camouflage my bald eyes and forehead.
“Maybe it’s a sign that you’re done with cancer,” my teenager said, giving me a sweet hug. I didn’t contradict her. Sometimes, the hardest part of life after cancer is moments like this, when I wish I could keep the suckiness a secret from people I love.
