What I wish I knew: Coping with chemobrain

When I was diagnosed with breast cancer in 2015 it was shocking to me and my family. I’m sure most people feel this way and can relate. Cancer wasn’t something I thought would be part of my future, but here it was nonetheless. The first few weeks after diagnosis were a blur. I was in shock, a bit numb from the diagnosis of triple-negative breast cancer, and overwhelmed with all the information I was receiving. I’m sure my doctor told me that the chemotherapy I was going to be given could impact my memory — something I have come to know as “chemobrain” — but it’s something that I was definitely not prepared for. If I could go back and say I wish I had known more about one thing — it’s this. I would have prepared myself better, been more ready for it, and maybe it wouldn’t have been as disruptive to my life.

First and foremost — chemobrain is real! I struggled to admit that it was happening or that it was a real thing for a long time. Then I thought I was a bit crazy for thinking it was real. And finally, after doing more research and confirming that it is, in fact, “a thing,” I now accept it. I accept it, but, like cancer, I don’t let it define me, and I certainly don’t let it get the best of me. To be honest, since I started addressing it, I feel like chemobrain is much less of an issue.

The reason this was such a big deal to me in the first place was that I always prided myself in having an excellent memory. I could remember everything! I started noticing a difference a few months after chemo ended and I was back at work full time. I couldn’t remember what I had for lunch the day before or what exactly was said at meetings I attended; conversations with my husband would be a blur. I started telling my family and friends, and they told me I was getting older and it happened to everyone. In my early 40s I would not accept that I was old and that was the reason I couldn’t recall much of anything from the day before. It was not normal! It was not something I was going to accept and be OK with.

I spoke to my doctor, I researched online, and I decided to take the advice I was given. I started making lists, creating reminders in my phone calendar, taking more detailed notes at work (I started typing them in meetings rather than trying to speed write), and I started reading more and doing brain teasers like crossword puzzles, sudoku, and word problems. I would also be relentless with myself, trying to recall what I had done the day before: What did we do last weekend? What did I eat? Who did I talk to? Anything I could do to help get my brain back!

Chemotherapy saved my life so it’s hard to be too upset about its side effects. But now that I know what I have to do to feel “normal,” I am happy to say that I feel much better. I still make lists, I still put reminders in my phone calendar, and I still question what I did the other day, just so I can prove to myself that I do remember. And it works! I definitely feel like I remember way more than I did. I feel more confident at work, I remember most of the conversations with my husband (although he may argue that point), and most importantly — I can live with that.

If you are recently diagnosed and would like to learn more, be sure to check out our Guide for the Newly Diagnosed and read our content on breast reconstruction. If you want to participate in the What I Wish I Knew series, you can share your story with Living Beyond Breast Cancer.