Some of the drugs used to treat breast and ovarian cancer have been shown to cause changes in the brain, but even cancer survivors who don't get chemotherapy seem to suffer from so-called chemo brain. Just the shock of getting a cancer diagnosis—not to mention the strain of managing all the doctors' appointments and learning a whole new vocabulary of medical terms—can set off a spiral of inattention, distractibility, forgetfulness, and difficulty in following complex reasoning. It's embarrassing and sometimes alarming.
I made promises and broke them. I arranged to meet friends and failed to show up. I gave up trying to remember significant events like birthdays and anniversaries in my own life, let alone others'. And let's not even talk about my shortfalls at work.
I've largely recovered my wits now—just in time to face the challenges of "senior moments." The strategies that work for chemo brain, though, help with forgetfulness from other causes. Here's some advice from me and my sister volunteers, based on our own experience:
*It helps to recognize your cognitive problems for what they are. Bonni Braverman, who volunteers on the ovarian cancer helpline, says it took her a while to realize that her chemo brain was a "side effect of the drugs and not a sign of depression or extreme fatigue." She says, "Once I accepted that fact, I was able to cope better and gain an understanding of my mental processes."
*Tell your doctor about your cognitive difficulties. Physical and occupational therapy can be helpful, and Ritalin has been used in some cases, says Agnes Solomon, a breast cancer support group facilitator who has read widely on the subject.
*Get a small notebook and keep it in your handbag to jot down to-do lists. It's very satisfying to cross off tasks you've completed!
*Remind yourself to listen. Sometimes I failed to remember things because I never fully heard them in the first place. Get into the practice of paraphrasing and parroting back instructions to make sure you've understood.
*Write all appointments and social engagements in a calendar that you carry everywhere. Not only will it remind you when you need to do things but it will also be a good resource if you need to refresh your memory about when you last had a certain lab test, say.
*Take advantage of technology. "With our advanced phones, we can now set an alarm," says Agnes Solomon. Use your phone to remind you to take your medication and show up for meetings and appointments.
*Consider keeping a diary. During her treatment, Diane D'Angelo, the breast cancer helpline scheduler, recapped each day. Her journal served as a mood elevator as well as a personal history. "I focused on the good things in my life," she says. "Even today I keep a journal not to record the sad, gloomy times but the happiness I have obtained."
*If you're someone who's used to scheduling her life as tightly as a jigsaw puzzle, you may need to allow some gaps. Having cancer is like having a second job, and you need some time to deal with the paperwork, read up on the disease, and just unwind. Meryl Fox, who's been treated twice for breast cancer and once for endometrial cancer, was able to hold down her job, but the effort of wrestling with chemo brain all day caused strain at night. "I was deprived of sleep, I would cry a great deal, and I could not seem to quiet my mind at night and focus," she remembers. Gentle exercise helped. "In warm weather, I would go outside after dinner and do some walking, which would sooth some of the fidgets."
*Don't even try to multitask. Research suggests that in most cases, people don't actually focus on multiple tasks simultaneously. Rather, the brain switches rapidly from task to task and back again, and with every switch it must refocus. All this starting and stopping results in slower completion of each task, poorer work quality, and outright blunders—even in people with the nimblest wits. Instead, devote your full attention to one task until you complete it.
*Identify your memory lapses, and set up a system to prevent them. Judith Fox, who was diagnosed with stage IIIc ovarian cancer nearly 15 years ago, serves on SHARE's Ovarian Program Advisory Committee. She says she sometimes forgot to take her medication. "So, on the fridge, I put a large lined Post-it pad with dates and days of the week for each month and room for a checkmark that meant I had taken both the A.M. and P.M. pills." Though her chemo brain has subsided, she now uses a system her doctor recommended. Each week she fills a plastic pillbox marked with the days of the week that has compartments for morning and evening doses. Perhaps most important, she says, "my pill container is on the kitchen table and not inside a cabinet where it's easy to forget."
*Get used to explaining and apologizing. People can forgive a lot when they understand that what's making you so forgetful is not carelessness but a side effect of your illness and treatment. Most important: Forgive yourself. "It's easy to be frustrated by your mistakes, but try not to be harsh on yourself," says Judith Fox. "Chemo brain is real, and it happens to so many of us."
You've probably found other strategies that are helpful to you. What are they? Please leave a comment sharing what works for you, so others can benefit from your experience.