Chemo Brain … Is it Real?

Haha! Chemo brain … is it real? Well, I thought of it as a topic while on another site. I only had to find the right tab to get to my blog site. By the time I clicked over here, I had already lost the idea I had… Oh yes! Chemo brain reigns here.

For many years, doctors didn’t believe chemo brain was real. (Easy for them to say – they didn’t have to suffer with it.) Now, however, it is widely accepted that chemo brain is a very real phenomenon.

Mayo Clinic includes information about it on their Website.

https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060

It frustrates me a bit to see that they do not believe chemo brain is caused solely from chemotherapy. More studies, they say, are being conducted. I suspect that they want to say that the stress of having cancer contributes to the “cognitive impairment.”

Here’s what I know from a personal stance. My mind worked quite well prior to being diagnosed with lung cancer. I reveled in doing long, involved research studies.  I loved reading books. I wrote state and federal grants for a living.

Today, as noted above, I often cannot remember a thought for even one minute. I do not enjoy reading because, again, I don’t retain what I have read for a long enough time for a book to make sense. Give me technical information to read and my mind shuts down completely.

Not so long ago, I made my living, in part, by reading and dissecting information in the Federal Register. There is no hope that I will understand what I read in that government document now.

Before chemo, I had a good vocabulary. Now, my mind goes blank. I know I know a particular word, but for the life of me, I can’t think of what that word is. It is so frustrating!! I can generally come up with an alternative word to use, but the alternative is often not as good as the one on the tip of my brain would have been.

I think one of the hardest things to adapt to regarding chemo brain is how I lose people’s names. Gone. Doesn’t matter how much I like a person. It doesn’t matter how often I am around them. Their name or the name of their dog or spouse or child is nowhere in my head. I draw a complete blank.

I have been known to get my phone out and scroll through the contacts until I finally come across the person’s name that my mind has lost. Thankfully, I do recognize it when I see it! This memory lapse is frustrating and embarrassing. I don’t know that anyone would understand that it truly has nothing at all to do with how much I like a person. Nothing.

So, after dealing with this memory fog for over five years, I’ve come up with a few ways to deal with it. I would love to hear what others do to combat chemo brain. Maybe we can come up with a viable resource for cancer patients!

Ways I Combat Chemo Brain

Calendar – my online calendar is my greatest tool. If an event or date does not make it to my calendar, it doesn’t exist for me. Sometimes, even if it does make it to my calendar, I forget it, but the calendar gives me a fighting chance! I set the calendar app to remind me several times about events that I really want to be sure to remember.

Lists and notes – I have them everywhere. I bought a Samsung Note phone so that I could easily make notes on there, but I have to say that I am most likely to still use a pen and paper. I’m old school. There are two major problems with my lists and notes – (1) if I am not near my pen and paper (or phone) when the thought occurs, the idea will leave before I can memorialize it and (2) I end up with lots of notes and lists in lots of places … and I am just as likely to lose them as not.

Honesty and humor – I warn people that my memory is no longer any good. There is not much I can do about it. The more I stress over it not being good, the worse it gets. So, I have found that, for me, just telling people upfront that it is not personal, but my memory is just not what it once was any longer. Hopefully, they will understand. If they don’t, there’s really nothing I can do about it.

I tell people I wake up in an all-new world every day. It is amazing how many events my family will discuss that leave me staring at a blank screen in my mind. I might remember parts of the event, but not specifics. It is weird.

I had memory lapses before I had chemo. But, trust me, they are not the same as chemo brain. And truthfully, even though I will usually just smile and shake my head “yes” when someone tells me they have chemo brain, too, even though they never had chemo, it really frustrates me for them to make light of my condition.

The fact is that they might indeed have issues with memory, but they do not have chemo brain. It is a phenomenon that is impossible to adequately describe, really. But, it is far more than just a simple memory lapse.

What about you? Do you have chemo brain? What ways have you devised to help you combat it? What do you think when people who have never had chemo say they, too, have chemo brain?

I’d love to hear from you!

 

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