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Chemo brain: Learning how to cope

Are you having a hard time staying focused or remembering things? Do simple tasks take much longer than they used to? You may be experiencing a side effect of chemotherapy, often referred to as “chemo brain”. Chemo brain can be manageable, but coping with its emotional effects is not always easy.

The following are excerpts from an interview with Hailey Hassel, M.S.W., L.G.S.W., BMT Social Worker in our Patient Support Center.

What advice do you have for someone struggling with the emotional effects of chemo brain?

Hailey: Chemo brain can make it more difficult for you to do everyday tasks. This can lead to emotions like anxiety, grief and frustration. You may find yourself feeling angrier or more easily tearful than you used to. Be patient with yourself and accept where you are in your recovery. It’s not likely to be your reality forever, but it is for today.

Find strategies that will make things easier. Some people use humor to cope with frustration. Our survivorship chats and support groups are a good way to connect with other transplant recipients and learn new coping strategies. It may help to tell your loved ones what you’re going through so they can better support you. It’s also important to tell your doctors so they can rule out specific causes (like a medicine you are taking) and give you tips for how to cope.

For someone experiencing chemo brain, what advice do you have about going back to school or work?

Hailey: When returning to school or work after transplant, it can be hard to keep up with required tasks and demands. Consider these tips:

  • Start out slowly.
  • Create a To-Do list.Use sticky notes to remind yourself of important items.
  • Reference your calendar throughout the day.
Ask your teacher or employer about accommodations that could help you succeed (such as recording meetings, or organizing your work area for better concentration).
You may not be able to fill the same role after transplant and may need to redefine your purpose, or even search for a new one. It can be hard to accept this reality. It may even feel like you’ve lost a part of your identity. It’s OK to acknowledge and grieve these losses. Talk about what you’re feeling with your caregiver, a close friend or family member.

How do you recommend someone talk about their chemo brain with co-workers, classmates, teachers or managers?

Hailey: You may choose to say something like, “Since going through treatment, my brain works a little differently. I’m going to take some notes during our conversation so I don’t forget anything.” If you’re worried about disclosing your story to others at school or work, it’s important to know you’re not obligated to explain yourself. Some people find it helpful to have quick responses ready so they’re better prepared if something comes up. For example, you could say, “the thought escaped me” or “it’s been a long day.” Ultimately, you get to choose what you want to share.

For parents of children going back to school, it’s important to tell your child’s teacher what to expect and the best way to handle any situations that may arise. You don’t need to tell the full story – just what’s important for the teacher to know so that your child can succeed. For example, you could say:

“__________ is on a new medicine that affects his/her thinking. He/she may be a little more ‘spacey’ or forget things sometimes. He/she typically feels __________ when this happens. I’ve found it helpful to _________.”

How can caregivers support loved ones struggling with chemo brain?

Hailey: Be patient with your loved one! The effects of chemo brain can make it difficult to do certain tasks. Your loved one may feel embarrassed or frustrated. Support them as they do things on their own, even if it takes longer than it used to. It’s OK for them to make mistakes. Note which coping and management strategies work best for them (for example, breaking tasks into smaller pieces and using sticky notes for reminders) and encourage them to use these during daily activities.

What else do you want someone to know if they’re struggling with chemo brain?

Hailey: You can be thankful for your transplant and still be angry about the side effects. That’s OK. Tell yourself, “I don’t have to like this reality, but it’s where I am today. I’m going to try to make this work.” Find strategies that work best for you, and incorporate them into your day. Pay attention to your body; it will tell you when you feel the most productive. It’s OK to take breaks when you feel tired. Lastly, be patient with yourself – you’ve overcome so much!

The Be The Match Patient Support Center offers:

Resources to help you learn more about:
Coping with chemo brain or anxiety after transplant
Going back to school or work