Forgetting names and dates, being tired and lacking energy are all symptoms associated with chemo brain. It can be surprising for friends and family to see you experiencing these symptoms, especially without warning or knowing why.
Following up from our report on chemo brain, we wanted to focus our attention on how to explain chemo brain to friends and family. As well as provide some tips to help yourself, and your family and friends manage the symptoms of chemo brain.
Informing your friends and loved ones
Even if you don’t think you have chemo brain, cancer and its treatments can cause your brain to work a bit slower that usual. Cancer fatigue, lethargy, certain medications and being stressed can impact your cognition without you even realising it. If people are noticing that you are a bit slower in completing tasks, tell them honestly how you are feeling. It can be difficult for people to adjust to a “slower” you, but if you provide them with some structure on what you can do, it should resolve any tension. For example, if a friend, child or work colleague has requested a lot of your time which you know you don’t have the energy or brain power for say “I only have the energy for one, maximum two, of these tasks at present. What is the most urgent and important thing I can do for you?”
For those who have never heard of chemo brain, their immediate reaction may be to head to the internet. Trusted websites, such as Cancer Research UK or the American Cancer Society, are a good starting point for understanding chemo brain and gaining a better picture of what it entails.
Write things down
In our survey, writing things down was the number one way people managed their chemo brain. Buying a notepad, using your phone, or keeping a cancer journal will allow you to keep tabs on the little important bits of information you’re more likely to forget. Setting alarms on your phone for daily tasks are also an excellent way to help with short-term memory loss. Another bonus is people will think you’re super organised.
Readjust your expectations
Cancer units are filled with individuals with their own stories. You will have met and 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 also may meet people who you feel “are doing better than you.” Everyone is different, and everyone experiences cancer, and it’s side effects uniquely. Just because the person next to you can go back to work, or look after their family without additional care or support, does not mean you should. The same is true for friends and relatives who want to share with you personal anecdotes.
Everyone encounters those unintentionally unhelpful or insensitive comments, such as “I know someone who had what you have, and they were climbing Mount Everest the day after their surgery and chemo finished.” Only you truly know how you feel. Setting small, specific and time structured goals will allow you to show yourself, and others if you wish, that you are accomplishing tasks and meeting your objectives. One small goal could be going for a walk around the block every second day with a friend or family member. Or finishing one crossword puzzle a day to keep your mind stimulated. If you do encounter one of those anecdotes, a polite way to respond is by acknowledging their story, for instance, you could say “that’s an interesting story, thank you for sharing.”
Identify what works for you
Following on from readjusting your expectations, find out what you value and what is important to you. It can be something simple like continuing picking your children up from school or attending a weekly meeting that keeps you in the loop at work. Suggestions from friends and family are always welcomed, and it can be beneficial to step outside your comfort zone to try something new (try one of our tips to help manage chemo brain). But you shouldn’t feel forced or pressured.
If you do find yourself in an uncomfortable position, for example, you’re brain isn’t keeping up with a task, or you feel pressured into doing something that you don’t want to, write it down and come back to it. Find some time to go over your list, and identify what you did, how you felt, how it made others felt, and whether anything was achieved. You’ll then be able to more clearly articulate to others what does and, more importantly, what does not work for you.
Remember, you’re not alone
The feedback we have received from our report has been overwhelming. So many of you didn’t understand the symptoms you’re experiencing. The comment of “I thought I was going mad!” was prevalent. You’re not. And you’re not alone. If you do find you are becoming more worried about your cognition, your treating doctor or specialist nurse should be able to give you advice, as well as rule out any other factors that could be causing the symptoms.