Let me tell you about “chemobrain.” I can tell you about it, because I’ve been a family doctor for more than 20 years. We touched on it in medical school; I reviewed the subject during my oncology rotation; I’ve seen the results of the toxic lifesaving chemotherapy agents my patients needed. I’ve seen the consequences these powerful drugs can sometimes have on their lives.
Chemobrain is the name for the feeling when rounds of cancer-treating chemotherapy sap your brain and you just cannot think of the word you want to use. You could be speaking or writing, but the word just does not come—even if you’re trying really hard.
In the beginning, you won’t really even know it’s happened. You just go blank; there is no thought. You just sit and watch. Your head hurts and rest does not make it better. You are partly gone—a ghost in a shell. Just wait, people will say.
Scrolling through screens and watching movies are out of the question, and sunny days or windshield wipers on rainy days can wipe you off your feet to your bed with a headache. But sometimes, you’ll feel like you’re able to try to get out and do something, only to be reminded how bad it is once you’ve tried. Wait longer, people will say.
There can be despair when you start to be aware of the damage. But then again, the chemotherapy agents also hit the neurons of your brain’s emotional centres. So maybe you can hardly even be anxious or mad anymore: All is gone. It doesn’t matter. You are just trying to survive and really, you’ll take as much chemobrain as it takes, brain-dead or not, to continue to live. Just be patient, they’ll insist.
It’s like a concussion. Rest. The headache in the morning still comes when you wake up, and you try not to walk too fast or it takes over again. Don’t do too much, they will say. The irony of it all! All you want to do is to seize the day! You want to live your life—whatever life you have left, anyway—with your family, to the fullest.
What life is like when you have breast cancer–and kids So you’ll try. You’ll try to speak at the store and the wrong words come out, or none at all. The cashier will look at you blankly, unkindly, waiting. Out of desperation, you’ll search for other words around it. You might try to make excuses, or tell the truth, but when you look behind you at the line forming, everything becomes overwhelming. The outside world does not humour you.
But your family and good friends do. Your people, your family, your finances, your job or career, your pets, your dirty sheets, and your toilets—it will all slowly come into focus. Maybe the people you thought would be there are there. Or maybe they’re not. What matters are the people who are.
Your family and those who love you will still be there. They will laugh with you when you say baseball instead of basketball, and they will pass you the corn with a smile when you ask them to pass the “thing” in the bowl. You will take inspiration from your 34-year-old son who has battled cancer twice, and from your 31-year-old son who has fought heart failure since birth. Your twins, now 12, will learn to fill in your words, trying several until they succeed—like they’ve invited you in to their twin bond. Even in their early years they recognize that a space fills your brain—a space that exits at your mouth. Your young daughter will invite you to the online calendar she created for you so you won’t forget to take them to another child’s birthday party, and your son will forgive you when you can’t help him with his elementary school math homework. On hard days, they might cry with you; they may even yell, or say “it’s not fair.” But on most days, they are the rocks that will keep you grounded and keep you going, telling you it will be better tomorrow.
Sometimes, those better tomorrows will come. Your brain will start to think again, little by little. It will be hard to read again, but it’s because your brain is having a moment of multitasking, or at least trying to, and you know it is healing itself. And in those moments, where you’re allowed to preoccupy yourself with what’s important to you now, you realize just how much your fight against cancer—chemobrain and all—goes beyond yourself. It’s about the people around you: the people you love, the people who need you. What’s important to you now is that they know you love them.
You, who was diagnosed with stage three breast cancer in 2016. You, the rare patient who suffers from this severe case of chemobrain, this significant cognitive impairment, but who has been accepting and begging for more of the complex lifesaving regimes these toxic gems provide, all the same. You, whose brain has been sapped of the very things that make you who you are.
The things that make me who I am.
I am the patient now. And the dirty socks that my growing and grown children leave scattered around the house don’t matter. The muddy stairs and the sand they track into my bed are no longer my focus. What’s important is that my children know I love them because then they will feel cherished, self-confident, and happy to go forward in their lives to find out what it holds for them. What’s important is that I teach them to look after themselves, to love and respect themselves, so that they will love and respect the people they will have when I am not here.
What’s important now is enjoying every day with them, because while we may have many more, we will not have this one again.
My children: Being here to see you smile, to share a laugh, to give a lift over one of life’s hurdles is everything to me. When the words fail me now I am grateful I still have a little left of myself to show you how much I love you. As long as I can to stay here by your side for even a moment more, I am happy.
Sometimes, I don’t have the words I want to say. But even with chemobrain—when the words fail me and I get mixed up—at least I can still say I love you.
Lana Dyment is a family doctor in Burnaby, B.C., who is currently off work for breast cancer treatment.