Is chemo brain real?
Heck yeah. But what does it feel like. Imagine being in a murky lake, under water, wearing ankle weights, pressure in your ears and head. You fight, kick, pray for help. But it doesn’t come.
If that doesn’t resonate, think of driving on a slippery winter road on a foggy night. Dense clouds limit your vision, the white line on the shoulder isn’t visible. Yet you are required to continue traveling, at fifty miles per hour.
So, how do you function, more specifically, how do you keep your job with chemo brain? I was a paralegal for thirty-years prior to experiencing chemo brain, and naively, anticipated I would easily work through it, simply buck up and make it happen. Wrong!
After chemo, I couldn’t speak in full sentences as I would get confused, wondering where I was in the conversation and what to say next. I could hear the words in my head, but not get them to my tongue. I forgot the names of people I had known for years. I had noticeable short term memory deficits. I stopped going out, interacting, and became depressed. This self-assured, confident, and fierce woman, turned timid, insecure, and reclusive.
At work, I forgot names, dates, and events. Worse yet, I could not recall deadlines or how to prepare documents I had drafted hundreds of time. I was drowning and failing. My employer was kind, gracious, and patient, but I knew I needed to step up or step away.
I began writing sticky notes, putting them everywhere; the copy machine (reminders on how it worked), the phone (how did I usually greet people?), my monitor (the firm’s address), and paperwork (don’t forget to file). I wrote cues in my phone: Kecia – Realtor, Ron – Dance Instructor, Chip – Mechanic, doing the same with client’s names so I would remember their case. I created a world of reminders, ticklers, and self-helps. And I practiced reading, writing, and speaking. It didn’t come easy, but it did come.
I journaled everything that came to mind. I made lists labeled, “Dates,” “People,” “Events,” “To-Do’s,” and when something sparked, I put it on the list. I carried a notebook with me and kept one on my nightstand, transferring everything to my “lists.” During phone conversations I took copious notes of the big and small things, transferring them to the lists after hanging up.
I turned off the tv and read, did crossword puzzles, and word searches, only using my electronic devices if they would move my brain forward. After years of work, the water wasn’t quite so deep, and the white line came into focus. I cannot say exactly when, but one day my words began forming intelligent sentences again, faces had names, and the pressure lifted.
There are still lingering effects. I am not as quick thinking, nor speaking as prior, but I understand the words and can articulate them now, even if it takes longer. I still forget short term things, but if it’s important, I write it down. I came to realize there is no way to go through eight months of clinical trial, four months of week-long, in-patient chemotherapy, and another two years of maintenance immunotherapy without chemo brain being my life’s companion. But now, it’s manageable.
WRITE NOTES – Write everything down. Keep specific lists for requirements in your work day (or home life). As you remember things, put them on the list. These lists will start out sophomoric but will evolve as your brain recovers.
REMIND PEOPLE YOUR BRAIN IS NOT WELL – it is difficult to admit, but it is a fact of a cancer patient’s life. Your brain has been injured and if you don’t discuss your difficulties or limitations with those around you, they will never understand the gravity of your situation when you forget, stammer or stumble.
GIVE GRACE – Time is needed to recover from any illness or injury. You must come to terms with your new normal and give yourself grace. Chemo brain, while not an excuse, is also not a fault. Be kind when people don’t understand, and be gentle on yourself when the monster appears. It will get better. Things will likely never go back to the way they were before, and surely not in the timeframe you would like, but they will get better.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.