Just so you know, when I stumble over my words and struggle to get them out, I may chuckle, but it’s not funny. That chuckle is to keep from crying.
I am nodding to you as you share something with me, not because I’m understanding, but because sometimes, I am a little embarrassed to say to you, again, to repeat yourself, especially when everyone around me seems to understand what is going on.
I take longer to read sometimes, not because I am a slow reader, in fact reading is one of my favorite hobbies. I take longer because sometimes, I have to read a page 3 times before I can retain what is going on.
I will forget something that you may have told me a few minutes ago, the day before or even a week ago. It’s not because I don’t find you or your words important, but it’s because my short-term memory is now full of holes that I am trying to learn how to fill.
Please don’t tell me how that happens to you or how you forget things all the time. This isn’t forgetting things; these things are gone from my memory.
Stopping in mid-sentence because I have lost my train of thought.
Scrambling to piece through snippets to try and recall what someone is standing in front of me talking about, so that I can respond with what they need to hear or with the proper answer.
This is just a small sample of what it’s like to have chemo brain. Over the past few years, I have tried to laugh it off when something happens when I’m speaking to people, but it’s not so easy anymore. The hurt and frustration is getting bigger as I get farther away from treatment without any improvement. In fact, it feels as though things have gotten worse.
Yesterday, my frustration was very high. I could not understand what I had read several times and it took longer than usual to type up a paper. I logged onto Facebook to vent to my fellow sisters, who I knew would understand, when I noticed one had just typed about the very same thing. I cried. I cried with defeat, because it feels like this will never go away. I cried with relief, because I am not alone in this hell.
She just participated in a study at Yale that is focusing on chemo and the effects on the brain. I pray that they find something that can help us move on in some type of normal way.
I’m lucky in a way. I have my husband who seems to understand. He doesn’t laugh when I fly off topic, lose my train of thought, or am unable to follow his conversation. I have my parents who patiently wait while I try to muddle through my topic. I have my daughter who has finished sentences for me to help me get back on topic. I’ve noticed that my 13 year old son has started to do that too. I’m grateful for them.
I’m grateful to have an oncologist that understands and who is awaiting my phone call to set me up with a speech pathologist. I will be making that call today.
So please, the next time I stumble on my words, lose my train of thought or ask you to repeat yourself, please don’t laugh at me. Don’t judge me as being inept or assume that I am joking, just respect me for my changes that have occurred and support me on my journey.