Have you been more forgetful since you started chemo? Feel like you’re walking around in a bit of a fog? You might feel like you’re losing it, but in fact you’re probably experiencing one of the most common side effects of chemotherapy – “chemo brain”.
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. So after our initial report on chemo brain, we wanted to focus our attention on how to explain chemo brain to friends and family. Based on feedback from the cancer community, we’ve put together some tips to help you, your family and friends manage the symptoms of chemo brain.
1. 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 also impact your cognition without you even realising it. If people are noticing that you are a bit slower in completing tasks, you might feel embarrassed or frustrated. If you feel comfortable discussing your diagnosis with them, you could tell them honestly how you are feeling – this might mean they can adjust their expectations, do something to make things easier for you to handle, or just give you a bit of a break!
However, if you’re not comfortable discussing it (for example, handling cancer in the workplace can be difficult depending on your situation), there are still ways that you can get people to adjust to a slightly “slower” you. Providing structure and being clear about your intentions can help to resolve some 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, you could say something along the lines of “I only have the energy for one, maximum two, of these tasks right now. What is the most urgent and important thing I can do for you?” Sometimes even just giving people a clear expectation of what you can manage and when you can manage it can be enough to make things easier.
2. Beat chemo brain – 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 is also an excellent way to help with short-term memory loss. (Keeping notes also gives you a great excuse to buy some gorgeous new stationery – who doesn’t love a crisp, clean new notebook?)
If you’re happy talking to family, friends or colleagues about your treatment, you could tell them why you’re becoming more of a “writing things down” person recently – and you could even encourage them to help you out with it. Instead of asking you to do something as they run out the door, or mentioning something in a phone call, you could set up a notepad on the fridge or your desk where people have to “file their requests” in written form. That way, the responsibility for remembering things is shared between all people involved.
If you feel self-conscious that people around you might notice your “memory hacks”, try to reframe it in your mind – they might in fact just think that you’re incredibly well-organised! You could even tell people you’re trying a new “life hack” to increase your productivity. Though you might feel embarrassed, most people have experienced some level of forgetfulness or “mind fog” themselves, and the fact that you’re being proactive about it will only reflective positively on you.
3. Readjust your expectations of yourself
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 might feel confident and well within yourself, but you also may meet people who you feel are “doing better than you.” It’s easy to feel defeated, but try to remember that everyone is different, and everyone experiences cancer and its 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. You know what works for you – so listen to yourself first.
At some point during cancer, you will probably come across one of 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.” These might make you feel like you’re lagging behind other people, and the mind fog of chemo brain can add to that feeling. But only you truly know how you feel and what you need. 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 unhelpful anecdotes, a polite way to respond is by acknowledging their story. For instance, you could say something like, “That’s an interesting story, thank you for sharing,” or “Wow, what an achievement! That’s great for him.”
4. Find your focus
When things are feeling difficult or overwhelming, it can be tempting to just give up completely. But sometimes it might just be a case of prioritising differently, or reducing the amount on your plate. Try to figure out what activities you really value and what’s most important to you. It could be something simple like continuing to pick your children up from school, doing the shopping and cooking a meal, or attending a weekly meeting that keeps you in the loop at work. Then try to focus on methods you could use or adjustments you could make that would make it easier for you to carry on doing that activity.
Having one or two concrete things to focus on and aim for could be really helpful – and if you’re stuck for ideas, suggestions from friends and family could be a good place to start. It could even be beneficial to step outside your comfort zone to try something new. But you shouldn’t feel forced or pressured to do anything that feels too much or not “you”. (We’ve written an article with some helpful tips to help manage chemo brain that has some ideas too!).
If you do find yourself in an uncomfortable position, for example, your brain isn’t keeping up with a task, or you feel pressured into doing something that you don’t want to, try writing it down and coming back to it later. 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.
5. Remember, you’re not alone
The feedback we’ve received from our report on chemo brain has been overwhelming. So many people just didn’t understand the symptoms they were experiencing, and one of the most common comments was simply “I thought I was going mad!” Don’t worry – you’re not! And you’re not alone either. You might feel tempted to “stay strong” and “carry on as usual”, but if you need a little extra time or a few extra reminders, you absolutely deserve that support from the people around you. A little change for them might make a big change for you, but they might not adjust and support you if they don’t realise what’s going on – so (as always) communication is key.
If you do find you are becoming more worried about your thought processes and cognition, your 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.