This post is a collaborative effort from the members of Breast Cancer Sisters compiled by Taylor Eames.
Is “Chemo Brain” real?
If you ask the Mayo Clinic, they say, “Though chemo brain is a widely used term, it’s misleading. It’s unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors.¹” In fact, they mention many other conditions related to cancer and its treatment, such as stress, anxiety, fatigue, infection, insomnia, and even brain cancer, to try to explain the phenomenon.
But upon posing this question to our support group, Breast Cancer Sisters, the answer was an emphatic YES! Thankfully, the Mayo Clinic is hearing the outcry from the foggy minds of cancer survivors. They are acknowledging that “it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment.¹” Researchers are doing more studies on the subject.
Chemo Brain is characterized by our group members as a fog. Cori K. was describing her experience with multiple sclerosis in one post saying her brain function at times was like “swimming through honey.” I immediately thought that was a perfect way to explain exactly how my thought process has been since I went through chemo last summer. About halfway through my treatment plan, I was trying to introduce someone to my daughter, and for the life of me, I could not remember the other person’s name. It was incredibly embarrassing, and I felt like I made my friend of a few years feel as though she were not special to me because I could not recall her name. Shortly after that, I was trying to remember our zip code and numbers floated around in my brain with no rhyme or reason. I could see the numbers, I could reach for them, I know they were there, but I just could not get to them. The same often happens with our regular vocabulary. Fellow breast cancer warrior, Linda L. says, “I describe it like my brain is in a blender, and the words are swirling around. I know what one I want, I just can’t grab it.” I brought up the concern to my oncologist. He acknowledged that I was having memory issues but refused to admit that it was caused by chemotherapy.
As I said above, our members believe otherwise as they hadn’t suffered from these problems prior to treatment. Many of our members report forgetting names of family and friends and numbers they’ve known for long periods of time, stopping mid-sentence unable to remember what they were speaking about, or not being able to reach words in their muddied brain. Below are some of the funnier moments our members have mentioned.
“During chemo [I] was on my way to work (bald) and thought I might have left the curling iron on. And a few months back I did this (picture below)”–Kelly N.
“I was just on the phone with my doctor and they asked for my last four digits of my social security number…can’t remember it at all!”–Jane B.
“[This is] one of my greatest frustrations as I always had a photographic memory. I work as an assistant principal and my campus supervisor always tells me, ‘You had a super power. Now you are a human like the rest of us.'”–Christine A.
“[I] was asked for my address and had to look at my driver’s license!!”–Sue H.
“I almost made kitty treat tea instead of real tea and it took me hours to figure out we were out of tea!”–Lynn R. (picture below)
“I forgot the chili powder for the homemade chili I am making.”–Jennifer G.
“I totally had chemo brain this morning. I was walking out the door to run some errands and forgot to put on my shoes. Good thing I didn’t get far, my feet got cold!”–Amy C.
“I literally called the PA at my oncologists office to ask a question, totally expecting to leave a message and she picked up. And the question jumped right out of my head. I had to hand up and call her later that day.”–Kristy I.
“When I was having my chemo treatments, I ended up forgetting, of all things, my husband’s birthday.”–Anna R.
“I left an $80 tip to a server last week and the bill was $220. I’m sure she was happy, not sure how it’s going to look on my expense report.”–LaChelle M.
Now that we have established it is real even though the Mayo Clinic doesn’t believe it, here are some suggestions from our members on how to combat the foggy brain.
- Make lists. Use your phone or a small notepad to create a to-do list for yourself and carry it with you everywhere. Check off things you have done and add things you need to do any time you think of them.
- Set reminders on your phone. I personally have 4 reminders on my phone daily just for my medications.
- Play memory games, read books, play Words with Friends, etc. Anything you can do to work your mind can help restore your brain function.
- Keep a GPS in your car or use your phone. Many of our members have mentioned getting lost when driving or walking. If you keep your phone with you, you’ll be able to use it to find your way back to where you came from.
- Ask friends, family, and co-workers to be patient with you. You can even ask them to help you out when you get stuck. Explain why in advance so they understand. Ask for vocabulary help or to remind you of people’s names.
- Sticky notes can be your best friend!
- Proofread twice! Check over messages to make sure you didn’t misuse or misspell any words.
- Repeat information out loud. I often say people’s names over and over again when I meet them so I don’t lose the name. Sometimes saying something out loud, in your head, and even writing it down all at the same time will help yor remember something.
- Minimize distractions. The more you can concentrate, the easier it is to remember things. If you are used to being able to multitask, it may prove to be more difficult now. Go easy on yourself if you aren’t able to do it any longer.
- Get plenty of sleep and rest. A rested brain is a happy brain.
- Talk to your oncology social worker or a therapist. This can be embarrassing and you need to work on accepting it. Talking to a professional can head off any anxiety or depression you may develop.
- Stay organized. Use calendars or planners. Clutter can make your brain confused.
- Take breaks. This is hard on you, and it’s exhausting to concentrate so hard. Give your mind a rest now and again.
Lastly, remember you are not alone. When I posted this topic in our group, it received over 100 comments in 6 hours time. It was cathartic to relate and laugh at each others’ comedic stories of memory loss. Join our group and laugh with us too.
….now, what was it I was talking about?
¹ Mayo Clinic Staff Print. “Overview.” Mayo Clinic. Mayo Foundation for Medical Education and Research, 15 Jan. 2016. Web. 17 Mar. 2017.
Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016. She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook. Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.