COPING WITH CHEMO BRAIN
What is chemo brain?
“Chemo brain” is a term that describes cognitive changes in people who have undergone cancer treatment. It’s also called “mild cognitive impairment” or “cancer-related cognitive changes” (CRCC).
The symptoms that people experience, and how long the chemo brain lasts, can vary from person to person. However, people who experience chemo brain generally describe it as a feeling of “mental fogginess.”
What are the symptoms of chemo brain?
Difficulty remembering facts (e.g., people’s names, important dates)
Trouble finding the right words or finishing sentences
Struggling to concentrate or learn new skills
Getting confused easily
Finding it hard to multitask
What causes chemo brain?
Surprisingly, “chemo brain” isn’t caused by chemotherapy alone: other cancer treatments and medications can also cause cognitive changes and mental fatigue.
Although the name might suggest otherwise, chemo brain can happen to anyone who’s living with cancer and being treated for it.
Scientists still don’t know the exact combination of factors that lead to chemo brain, but it seems to be caused by several things – including fatigue, lethargy, some medications, and stress.
Why have I never heard of chemo brain?
Even though it’s a very common side effect of cancer treatment, chemo brain is still under-researched. For this reason, many healthcare professionals don’t warn their patients about chemo brain. We know how frustrating this can be – especially if you start to experience side effects without any explanation!
How long can Chemo Brain last?
Due to difficulties in assessing and measuring the effects of chemo brain, there have been few studies into the duration of the cognitive impairment caused by cancer and its treatments.
However, a recent study in mice has shown that chemotherapy may cause cognitive impairment which lasts up to 3 months after treatment is stopped. If this model is applied to humans, it would equate to 10 years, suggesting that chemo brain can indeed have long-lasting impact on the quality of life of cancer survivors.
Chemo brain can start at any point in your treatment journey, and recent studies show that it can last even after your treatment has ended.
Managing Chemo Brain
1. Talk to your friends and loved ones
Cognitive changes might be a normal part of living with cancer, but we know that doesn’t necessarily make it easy. You might be feeling frustrated with your new “normal,” or embarrassed when you can’t remember things as quickly as you’d like to.
If this is how you’re feeling, it’s important to remember chemo brain is a side effect just like nausea or hair loss. It isn’t your fault, and it’s good to talk to close friends or family about how you’re feeling.
Speaking to your family and friends about your chemo brain symptoms will help them to understand what you’re experiencing and will prepare them to expect slight changes in your behaviour.
This will also give you a platform to be really clear about what you can and can’t do. For example, if a friend or work colleague asks you to do a task that feels overwhelming, you can be open about why you don’t feel up to it. Try saying: “I only have the energy for part of this task right now.” Or ask if you can divide the task into smaller chunks and focus on one of those.
Being open about chemo brain – even if it’s only with a few close friends – can also help you to build up a support network and make room for understanding. It’s a great idea to point friends and family towards reputable blog posts and articles (like this one!) and to encourage them to ask questions. The more people understand your experience, the more compassionate and helpful they’ll be.
2. Write things down
It’s simple, but it works! Lots of people with chemo brain manage their forgetfulness by keeping a notebook handy at all times. In fact, when we surveyed our dynamic community of cancer patients, “writing things down” was the number one strategy people used to remember details and fight chemo brain.
Jotting down notes, dates and anything you think you might forget is very simple way to keep on top of your daily routine.
Phone apps and to-do lists are also a great idea (and more subtle if you don’t want to be grabbing for your notebook all the time). Phones are also easy to carry around, and there’s the added bonus of being able to set alarms and reminders to allow you to manage your schedule. It never hurts to look (or be) organised!
3. Adjust your expectations
Cancer units are filled with individuals and each person has their own story. You will meet people who are experiencing their cancer diagnosis and treatment differently to you. At times you will feel confident and well within yourself, but you may also find that it’s hard not to compare yourself to other people – especially those who appear to be “doing better” than you are.
Everyone is different and everyone experiences cancer and its side effects differently. Just because the person next to you seems to be recovering quickly, doesn’t mean that you’ll experience the same thing. And that’s okay! Remember that every experience is unique, and try not to spend a lot of time comparing yourself to others. Focus on what you can do to make your days a little better.
4. Try a brain workout
Some people who experience chemo brain find that brain games and puzzles help to keep their minds sharp. Try a few to see what you like best and what helps the most.
Here are a few ideas:
Set small, achievable, time-structured goals. One goal could be to walk around the block every second day with a friend or family member. Or you could set yourself the task of completing one crossword puzzleeach day to keep your mind stimulated.
Keep a notebook or note app on your phone, and write things down.
Set alarms on your phone to remind you about tasks you need to do or places you need to be.
Play brain training games or use brain training apps (such as Luminosity or PEAK). It’s a good idea to switch up the brain games you play so that you keep your brain active and learning.
5. Remember chemo brain is real and you’re not alone
When we surveyed our patient community about chemo brain, many of you said “I thought I was going mad!” After reading through all your responses, we can confirm that you aren’t going mad, and you aren’t the only one experiencing chemo brain. It’s a good idea to keep track of your symptoms so that you can monitor them over time. If you feel that your chemo brain is getting worse, or notice big changes in your cognition, then speak to your doctor or nurse. They’ll be able to give you advice and rule out any other factors that could be contributing to your symptoms.