There were a lot of things about chemotherapy that I had wrong. Like apparently not all chemo regiments act like a diet plan, and not everyone loses their hair. But the most shocking of all was that chemo brain is real.
During treatment, I thought “chemo brain” was just something doctors kept referencing to make me feel like I wasn’t completely losing my mind. I assumed it was just some nice way of saying that I was dealing with a lot and so things would slip my mind.
When it finally started to catch up to me and became “chemo brain,” I figured that it would go away when the stress of treatment was behind me. But that’s not how it works. Like most things with cancer, it has a way of sticking around and invading all aspects of your life. Even today, chemo brain is still one of my most frustrating side effects.
Chemo brain affects me in three different ways:
1. I Forget Words: When I forget a word or can’t think of the word I’m trying to say, it can feel like I’m searching in a dark empty room for something that I’m not even sure exists and don’t remember what it looks like. When I’m writing and trying to find the right words, I don’t even know what to search for to find them. It’s a lot of stumbling, using placeholders, and rewriting. It’s frustrating because I can’t even remember the definition to help me find the word. I’ve started using certain letters or symbols as placeholders until I’m in a better state to review what I wrote.
2. I Can’t Remember What I Just Said: Please stop telling me that I told you the story I was just telling you three days ago. It’s embarrassing not to remember what I’ve said. I know it’s frustrating for you too, but please be patient. Please remember that it’s just as frustrating for me to keep repeating the same story and not even catch it until halfway through.
3. English/Grammar is Hard: I’ve always had an on again/off again relationship with grammar. However, post chemo (and even during) it seemed like a different language. Sometimes I feel like I’m staring at random symbols on my computer screen rather than words I’ve been using my whole life. It’s hard. It’s worse when it’s pointed out. I know it’s not malicious, but when you’ve been writing for such a long time and suddenly start to struggle to form a sentence, it can be a punch in the gut to hear you’re doing it wrong.
Chemo brain is very real, and it might not go away right after treatment. But I promise you can manage it.
Surround yourself with people you trust, and remind them to be patient. Try using tools like Grammarly if you’re struggling with spelling and grammar when you write. Stop multi-tasking (your brain has been through enough), and go for a walk when your brain gets overheated. Try playing games like Scrabble or Boggle to give your brain a workout, and keep yourself engaged rather than retreat.
Even though the treatment stops and the doctor’s appointments lessen, cancer survivors and cancer patients still have a lot to work through. Chemo brain is only one of the many common side effects that affect patients treated with chemotherapy. If you’re a caregiver, friend, or supporter, please remember to be patient and help your loved one out when they aren’t able to vocalize that they may need help.