Caring Currents

When Chemo-Brain Won't Go Away

Last updated:

November 11, 2009
worrieconfusedlady

"I just don't feel as sharp as I used to; it's like my brain is moving in slow motion." My close friend Amy, who recently finished treatment for breast cancer, was speaking to me and two other friends who are also cancer survivors. It was as if her admission yanked open a door; suddenly all three began talking about how emotionally devastating it's been to feel that cancer has changed their ability to concentrate, create, remember.

Sam, who's in his 60s and has had surgery for colon cancer, told everyone that his doctor had just told him about some research done at UCLA that demonstrated what cancer patients have been arguing for years: that "chemo brain," as the memory and concentration problems resulting from cancer treatment are known, can be very serious and doesn't necessarily go away after treatment is finished, as doctors had previously thought.

Everyone was so excited that we went to the computer, found the study, and read through it together. Here are some of the situations the study participants described:

  • Not being able to remember numbers or words
  • Leaving the house and not remembering where you were trying to go
  • Not being able to read anymore because of concentration problems
  • Not being able to absorb and retain information; feeling like you've lost the ability to learn
  • Having to give up driving because you don't feel "safe" due to concentration problems and spaceyness.
  • Going back to work and not being able to do the same job because you've lost the ability to keep track of schedules and details
  • Feeling anxiety and panic because the memory loss was severe enough to feel like a complete personality change

That particular scenario resonated with one of my friends, Jane, an ovarian cancer survivor in her 50s. "I'm more than two years post chemo and my memory isn't nearly as good as it was," she said."I used to be the one who remembered everything; my whole family relied on me. Now I'm the one asking people to remind me, and having to write everything down. It makes me feel terrible -- like I'm a different person. And people treat me differently because I can't be the responsible one anymore."

I noticed that as Jane said this, her husband and daughter exchanged glances; clearly this was an issue the whole family was aware of.

The more we talked about it, the more emotional it got. Amy, who runs her own business, admitted she's had to scale way back, even though she's considered cured of cancer. "I just can't handle the stress anymore; I feel like such a wimp, but I get exhausted and I forget everything. It's like all the details are falling through holes in a strainer. And the harder I try, the worse it gets. So I just have to sit down and give myself a break, and I finally realized I had to cut back on my work volume because I was falling behind."

Another friend, Rose, who was close to retirement when she got cancer, had been quiet during all this, and finally spoke up. She said for her, the feeling was more emotional -- "it's like I get overwhelmed and I just can't cope." Rose said she's been having to ask her adult son for help paying her bills and taking care of other things she used to do fine on her own, and it feels like a loss of independence. "Feeling dependent is really scary; I feel like I should be able to manage on my own, and I feel terrible when I can't. And if I'm having these kinds of problems now, what will it be like when I'm older?"

The discussion didn't resolve itself; these kinds of talks rarely do, of course. But sharing our experiences and feelings seemed to help, and everyone left feeling less alone. We all agreed it was a good thing the study had come out, validating cancer patients' and their families' experience. Now we can at least agree the problem is real. Maybe in the future we can also share ideas on how to cope.