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Barbara Tako is a survivor of breast cancer and melanoma and author of the book "Cancer Survivorship Coping Tools." She enjoys connecting with other survivors and helping them find resources. She is also a motivational cancer coping and clutter clearing speaker/trainer.
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After Breast Cancer, Looking Normal Isn't Always Feeling Normal

Why don't I feel myself? Why do so many of us (survivors) still say that months and years out, asks Barbara Tako
PUBLISHED: JUNE 22, 2016
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I was done with chemotherapy! I was done with radiation! I was done with multiple surgeries, including having my ovaries and uterus removed! My hair was back, and there was some color in my face again! So what was the problem? I didn’t feel normal. In fact, I felt anything but normal. Truly, my weakened immune system landed me back in the hospital with an intestinal infection (C. diff), which is so nasty that it wasn’t a good idea to have visitors.

There is an unhappy little surprise for cancer chemotherapy survivors after their hair grows back. Our bodies are still weakened, and maybe even damaged from treatments. Many breast cancer survivors are on another medication for at least an additional five years that has its own not-so-wonderful side effects. While we struggle to create our “new normal” (I really, really don’t like that glib phrase), we are perceived by those around us as already being “back to normal.” Wrong.  Oh so wrong.

It is great that loved ones are happy for us when we appear to blend back into the pack again. There is no ill will or neglect here. Being treated as “normal again” because we look that way is a perfectly logical and natural response. In a way, it is a relief to blend in again, but when we aren’t feeling great, it can be a little, well, annoying. There, I said it.

I, for one, am grateful for the ability to communicate and interact with other survivors—especially at that point in cancer survival. Support groups, online and in-person connections really help with not feeling well when we look well. We (fellow survivors) get it. What is going on internally isn’t always how things look externally.

This part of the process actually helped me to grow up a little. I realized that it was my job to bring up the topic of my cancers if there was something I needed to say. People aren’t psychic. If you need to say it, say it.

“So how are you?” Hmm. That still is a loaded question that can bother a cancer survivor many months or even years after active cancer treatment. What to say? The usual “Fine”? Probably, and definitely when it is asked in the standard “Hi. How are you?” social context.

Still, there is a little nastiness in me that wants to casually reply to the cashier or the person on the end of the phone with something like “Well, I had breast cancer, chemotherapy, surgeries, radiation and then got a melanoma on the other side of my body, and now I’m worried about (oh pick something—a cough, a lump on my hand, an upcoming mammogram or test result).”

That would be just plain mean, right? I know.

How about when family and friends ask how we are? Well, sometimes I tell the truth (whatever the current cancer worry in my head is) and sometimes I just say “Fine.”

Can you relate to this little rant? How do you respond? Thanks for listening!

Talk about this article with other patients, caregivers, and advocates in the Skin cancer CURE discussion group.
 
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