The Secret Suckiness Of Life After Breast Cancer

[joann86]

Below is a very powerful essay from one woman about her experience with life after breast cancer. Anyone else felt this way, or have thoughts about it in general? It's certainly worth a read!

"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.

"

Read the rest of the article here: r29.co/2yzu649

[Lkane]

It is so refreshing to read exactly what I've been feeling and experiencing. It may be odd to say but surviving cancer can create feelings of isolation and frustrations others cannot comprehend.

[BklynCatwoman]

Not the best article to read the first day you're starting on tamoxifen! I started reading it then stopped. I don't want it to influence the way I'm feeling/thinking. But I might refer to it later. Thanks for sharing it, though.

[Cu4281 in reply to BklynCatwoman]

I have been on Tamoxifen for about a month now. I do believe I am much more irritable and my husband and grown children will attest to that. So far so good tho. Maybe hairs appear on my chin lately but that seemed to be happening on and off before so no big deal - just pluck and go.

Maybe a bit more tired but not bad - it might still just be the radiation affecting me still. All in all not terrible affects so far. I have been pretty much doing what I always do and just started an HR Block tax class for a new direction. Must try to go on normally and get your mind in a good place! And get outside into the sunshine ☀️

[BklynCatwoman]

Thanks for your feedback. I've been trying not to read too much about Tamoxifen for fear that it will influence how I feel. This is Day 2 for me. So far, so good. When I go on a new med, I always write about how I feel in a journal. I never know how much is normal aging (I'm 58) or how much is the med.

[Kortkrop]

I've been on tamoxifen for a little over 2 years. My symptoms have been minimal. Occasional night-sweats only during the summer. I've had infrequent leg cramps, which I read might be related to tamoxifen.

Now that I'm through menopause, my oncologist will be switching me to something else. I'll find out next month.

[Tinydancer1]

I just had my last chemo (6th), will start radiation in a month, and then on to 10 years of Aramidex or a replacement AI if there’s too many side effects. I read and heard a lot of stories like this one, and I also had spoken to women who had no or minor side effects. My mom, now deceased, used to sing to me all the time whenever I worried about the future: “Que sera, sera! Whatever will be, will be. The future’s not ours to see. Que sera, sera!” She was a Holocaust survivor. I did pick up on a lot of her positive attitude as an adult, but sometimes struggle to stay there. Stories like this one don’t help me, but it read it all the way through on the blog, and I found more “Cancerland” stories. Excellent writing. Hard to stay positive, though, when you read some of these.

[joann86 in reply to Tinydancer1]

Hi Tinydancer1 , it's a struggle indeed, but keep taking it one day at a time. Thanks for sharing!

[IGotSunshine]

Thanks Judith, for your apt description of life "postcancer" (is there such a thing?). I, too, have noticed that friends who knocked themselves out to be helpful when I was in treatment now expect me to get over it and stop talking about it. This seeming lack of compassion hurt my feelings until I realized that they were right. By menopause, most women are dealing with some kind of lingering life crisis: divorce, troubled children, chronic disease, economic difficulties. I find that somehow comforting. Which is not to say that I don't love reading essays like yours that air my own particular kind of woe--with humor!

[Hidden]

I don't think there is such an existence as life after breast cancer. Our experiences with cancer stays with us for our whole life.