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Chemo Fog Trials & Tips

AnitaChemo Fog Lingers 

They must think I’ve gone crazy, I thought to myself in bed one night.

Earlier that day I’d chatted to my neighbours about their upcoming vacation.  I asked them where they were going, what days they would be out of town.  They answered all my questions, but hours later, I realised that we’d talked about that vacation the weekend before.  The prior conversation slammed back into my mind. 

I worried they’d assume their conversations weren’t important to me, which couldn’t have been further from the truth. I should explain to them, I thought to myself.  Tell them the chemo-brain lingers.  Unfortunately, I also forgot to follow up on that.       For me, the blanking out mostly relates to verbal conversations.  Things I read, they still stick with me very well, but sometimes the verbal conversations, just….vanish.  

This is life with chemo fog.  I used to think it just related to forgetfulness while undergoing cancer treatment. Because that totally happened.  Chemo brain, we all joked about it.  But, when chemo stopped, the forgetfulness did not stop with it.  Turns out that it lingers.

While the doctors warned of chemo fog prior to treatment, nobody ever said that it lasted after the treatment stopped. And after finishing my twenty weeks of chemotherapy to combat breast cancer, I learnt it definitely does.    

How it affects me

For me, the blanking out mostly relates to verbal conversations.  Things I read, they still stick with me very well, but sometimes the verbal conversations, just….vanish.  Not completely though.  Once I hear those conversations again, or someone reminds me of said conversation, they virtually all come back.  Though, in the absence of a reminder just….poof, gone.

This doesn’t affect my daily life; doesn’t affect the little everyday things.  What it does affect, for me, are social situations sometimes.

It’s so frustrating to have to keep asking people, “remind me again…_________.”  (Just fill in the blank with anything we may have talked about.) If the conversation happens to have occurred over a glass of wine, I guess people might think I’ve had one too many to remember the conversation.  It’s just not the case.

Sharing Understanding For me, the blanking out mostly relates to verbal conversations.  Things I read, they still stick with me very well, but sometimes the verbal conversations, just….vanish.

It’s hard to explain to people that you don’t just end chemo, get your hair back, and return to how you used to be. I think that many people forget, even if I’ve told them, that the chemo fog lingers.  I often get from people, “Remember, we talked about this.”  Or, “We just had that conversation the other day.”

Chemo causes long-lasting changes that aren’t always visible from the outside.  Sometimes I tell them, “Yeah, I have an excuse though, the chemo, it messes with your memory.”  Often the response I get back is, “Still?”   

So I ask my friends, please understand.  I do care about our conversations.  I care about the things they tell me.  I ask them to please forgive the things I cannot currently change.  My cognition.  I assure them that it is more frustrating to me than annoying to them.

This is the crap they don’t prepare you for.  The After.  It exists.  They just don’t bother to give you any tips on how to navigate through it. 

Anita’s Chemo Fog Tips

One piece of advice I would share with others is to find someone who has been through it.  Find someone you know… or find someone you don’t know… just connect with at least one other person who you can talk to and who knows exactly what you mean when you talk about the effects.  It does help.   

My solution to the lingering chemo fog?  Words with Friends.  Sudoku.  Puzzles.  Random things that keep me sharp.  I’ve read exercise helps too, but I still struggle with getting back into a regular exercise routine.  I’ve been working on that recently and it always makes me feel healthier and better about myself.  I have not yet seen huge changes, but I’m going to stick with it. 

And until then, please remind me again….

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Discussion

Bridget Dowsett (not verified)

I had Non Hodgkins eleven years ago and bowel cancer last November it's not only the chemo fog it's also the trauma it causes.

FCancerAK

It truly is difficult for someone to understand that hasn't been through it. I hope you are beating the suck-ass that is cancer.

Pete (not verified)

Good article Anita. Having read it, I showed it to my wife to help explain why my short term memory is so poor. I think she now understands a little better.

FCancerAK

Hello, Pete. Sorry you're experiencing it, but I'm glad my story could help you! Hang in there, and keep letting people know that it's a thing. Thank you for your comment.

SuEveHi (not verified)

I found I could only concentrate on one thing. I really struggled in busy environments, and with socialising (even with 3 or 4 people).
Going back to work was a concern, but it's not too bad. I can withdraw if it gets too much, and the problem is fading.

FCancerAK

I worked throughout (except on chemo days, well-after the 2nd week that is), and informed my coworkers of chemo fog throughout. And I continue to remind them that it lingers. I find they are very understanding. Plus at work, I always have a notebook, so I can jot down notes to remind me of things. I discovered that in social situations, where others are not constantly reminded, often people forget about the chemo fog. I also found that socially, people expected it to just go away, so I ask, "remember the article I wrote?" Or..I'll text it to them. :) Best of luck to you!

Tim Wheatley (not verified)

Nobody really warned me about chemo fog. I'm still being reminded by friends about conversations we had while I was suffering with sepsis, colitis, 5FU toxicity, DOD deficiency and T2N3 SCC right tonsil with bilateral cervical lymphadenopathy p16 positive!

FCancerAK

Wow, that's a host of issues! You deserve some forgetting for sure. The best of friends will be happy to remind you many times of the conversations. Hope you are doing better now.

samanthabritt (not verified)

Excellent info as I totally understand chemo brain.....luckily I did recovery fully last time so time heals your memory...well written

FCancerAK

Thank you so much. I'm almost 3 years out from my last treatment, and it still gets me sometimes. Glad to hear of your full recovery, that's wonderful!