Researchers finally accept that chemobrain is real

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Finally! Vindication. Chemobrain is real!

I am in an email group for cancer survivors (and interested parties) who are interested in information regarding work/employment during and after treatment. The group is a community off-shoot from the Cancer and Careers non-profit. It isn't an overly active group but some really great information is shared here. Please check it out. [Cancer & Careers googlegroup]

Recently, the moderator posted a link to a news story regarding chemo-brain. Researchers have found new evidence that supports what a lot of survivors have been telling their medical team for years -- CHEMO-BRAIN IS REAL. (laughs)

If you don't know the term, chemo-brain is a cognitive side effect of chemotherapy or cancer treatment. Basically, you feel as though you are in a fog. Your thinking isn't clear and it is more challenging to handle some tasks. Your memory isn't great, your ability to multi-task is compromised, you just don't think as quickly as you used to. It is really very frustrating. Especially if you're someone like me, who rarely writes things down (never really had to) and keeps all the balls going in your head. Chemo-brain puts a halt to that. But for a very long time, the medical community felt that it was well... all in our heads. They didn't really believe that it was real. My doctor told me (with the strong face of skepticism when I asked about it) that "if" it happened to me, which he didn't believe it would, it would end when my chemotherapy ended. So, when I found myself forgetting some of the most basic things... I realized that he might not have been right about that.

I have talked to a lot of survivors who have complained that their chemo-brain has persisted long after their treatment ended. One, two... even 5 years later, there are survivors who still struggle with some cognitive issues. And like I said... it is truly frustrating. Now... I've been a bit scatter-brained for awhile. Partly due to the fact that I suffered from clinical depression in the past and it affected some of my cognitive abilities. And then also because I keep a lot of stuff in my head. It gets challenging to keep it all straight. Chemo-brain affects me in little ways -- I forget names and numbers, I may forget why I walked into a room. My attention span is about as long as a gnat. I may forget that I turned the water on in the tub (yikes... I have flooded the bathroom before) and so on. It makes life interesting to be sure but I just figured that it was something I had to tolerate because my doc didn't think it was real and there aren't any "cures" for it that I'm aware of. And then I decided that I had to do something.

Action steps you can take:

Puzzles and mental games help.

My mother is retired. And she spends just about every day doing sudoku puzzles and word games. I used to laugh at her and her ever-growing collection of puzzle-books. Until she explained that she does the puzzles not only because its fun but also because it helps her mind stay sharp. I decided to start doing similar things. I play words with friends in order to keep my memory recollection sharp and to work on my strategy muscles. I'm not the best player -- not by a long shot -- but I can honestly say that it has been helpful.

Write things down. It really helps.

One of the biggest helps is something I simply don't do enough of... and that's WRITE STUFF DOWN. Chemo-brain is real. And it is unfortunate. But, you can work around it. Write things down, let people know that you might forget names or numbers and other small details and it isn't personal.

Ask for help and assistance to do some tasks. 

Set up alarms on your email and calendar systems. Ask friends to follow up with you on things. Carry a notebook with you all the time. Or use your smartphone to keep your thoughts togethher. 

Get some rest. 

Seriously. It makes a difference. Your body is still healing. Give it a break occasionally. At least 6 hours of rest each night is extremely helpful.

Cancer & careers has a great checklist of ways that you can mitigate the nuisance of chemo-brain. [Working with chemo-brain] 

Getting better but quite there yet. 

For me, it is getting better. But I still have a long way to go before I'm back to my old self completely. I will be honest too... my fear of chemo-brain has caused me to drag my feet about going back to school.  I've been thinking about it for over a year or so now. But my fear of being unable to keep up with the work has kept me from making the commitment and just stepping forward into that reality.  But, I've come a long way since the end of my treatment with my memory skills and my ability to think quickly and clearly. Sometimes I find myself frustrated but its nothing like it used to be. So, I may be ready to make that plunge.

*deep scary sigh*

One of my pink ribbon sisters is completing her final semester at Harvard this month. I want to be at her graduation next spring with the biggest smile I can possibly have. I am soooo very proud of her. Her journey has been so challenging, so difficult and yet she has persevered and made it through. That is inspiring to me. So, I'm going to work on completing these manuscripts, getting this website up and running and continuing to establish myself in this space. And then... I'm heading into the next phase of my dream.

So, if you're struggling with chemo-brain, know that you're not making it up. Know that it is real. And know that, with some effort, some time and different tactics... you can move beyond it as well.

What about you? What tricks have you used to get beyond memory issues (whether because of chemo-brain or not)? Let me hear from you in the comment box.

1 comment :

  1. Thank you for this. I finished chemo 4 weeks ago today and have been struggling with chemo brain. i have always done the forgetful things you mentioned so have become pretty good at writing things down. What i find is that i forget complete conversations. On a positive note it has made me more honest - but on a negative note i look completely thick when i havent passed on a message, and i look stupid when i start telling a story to someone for the 2nd day in a row. Thank you so much for this blog - some doctors have told me its in my mind so now i dont feel like i am senile. keep blogging x


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