Matt, transplant recipient
If you’re not remembering things like you used to, you’re not alone. “Chemo brain”—the term often used to describe thinking and memory problems after transplant—is a common experience among people who have had chemotherapy. For most people, chemo brain doesn’t last long. But for others, it can last for months or years. Fortunately, there are things you can do to help you manage day-to-day despite those “oops, I forgot” moments.
Recognizing the symptoms
While many people think of chemo brain as being forgetful, that’s not the only symptom. Some of the more common chemo brain symptoms include:
- Having a hard time remembering a word or someone’s name
- Difficulty staying focused
- Trouble learning new things
- Difficulty organizing daily activities
- Having a hard time doing several tasks at the same time
If you have these symptoms, occupational therapist Joette Zola, OTR-L, with Courage Kenny Rehabilitation Institute, says to talk to your doctor.
“While your symptoms are likely chemo brain, it’s important to let your doctor know about any new symptoms or changes you notice during your recovery, just to make sure it’s not anything more serious,” says Joette, who helps people learn to cope with the effects of chemo brain.
For example, tell your doctor right away about any new or sudden confusion, thinking that’s disorganized or feeling less alert. These could be signs of an infection or a serious side effect of a medicine.
“If it is chemo brain, your doctor can give you some coping strategies and tips to help you manage your symptoms,” Joette says. “If you need extra support, ask for a referral to a survivorship or rehabilitation program that can help.”
It can also help to put your energy and attention toward good self-care. “As you’re coping with chemo brain, there are triggers that can make it worse, like not getting enough sleep, not eating well and stress. Every person is a little bit different. Take note of what’s making your chemo brain worse, and try to avoid those triggers,” Joette explains.
Getting support from your family
As you’re coping with chemo brain, you may find it helpful to talk with your family. “If you try to hide what you’re experiencing from your loved ones, it can increase your stress and make you more tired. And that can lead to more memory challenges,” Joette cautions. “By talking to your family, you can help adjust their expectations of you right now, and they can help to support your new coping strategies.”
Joette adds, “Know that you are not alone and you don’t have to manage these challenges on your own. Talk with your doctor and your family, and ask for the help you need to manage your recovery. Above all, be kind to yourself and use the strategies and routines that work best for you.”
To family and friends, Joette suggests, “Don’t point out every mistake. Instead, help your loved one set realistic goals after transplant and take breaks.”
Manage chemo brain challenges
Here are some tips to help you cope with chemo brain:
Use memory aids
- Use calendars, sticky notes, checklists, alarms and alerts on your phone.
- Use a calendar or daily planner to schedule your days.
- Carry a small notebook or electronic organizer with you to jot down reminders.
- Use a bulletin board or dry erase board to post large reminders.
- Post small reminders where you need them—on the phone, in the kitchen, on the front door, etc.
- Bring someone with you to appointments to help listen, ask questions and take notes.
- List things you would like to get done and choose those that are most important to you.
- Do your hardest tasks at the time of day you find it easiest to concentrate.
- Write yourself simple, step-by-step directions for tasks that are difficult.
- Try to focus on one thing at a time. Turn off things that might distract you like the TV or radio.
- Ask for help making plans or decisions, even if it’s just to review and confirm your plans.
- Stress can make it harder to think clearly. Find ways to relax. Exercise and relaxation techniques like yoga, meditation and guided imagery can help reduce stress.
- Keep your normal routines and habits to lower stress on your memory.
- Plan your days and weeks. Make sure your plan is realistic, and that you schedule breaks to rest.
- Avoid multitasking when it could be dangerous, like when driving, cooking or watching children.