It has taken some time, but now science and medicine acknowledge that chemo brain is a real side effect of chemotherapy. It can last for a few months or can linger on for years.
Chemo brain is characterized by mental confusion, inability to multi-task, memory problems, the inability to concentrate, and vocabulary problems – either the inability to think of a common word or the inability to say the word aloud and say a different word or words instead.
Chemo brain can be funny at times (particularly to one’s relatives and children) but mostly it is a frustrating and sometimes frightening state of affairs. I have had chemotherapy twice and have gone through this experience both times. Even 3 years past the second chemo, it still strikes me when I am overly tired or stressed.
I composed a list of chemo brain incidents I personally experienced. If you can relate to these, you have probably experienced chemo brain too!
1. You lose your purse, cell phone and
keys on a regular basis. You’ve been
known to “misplace” your children
from time to time but they always
come back.
2. You lose your ability to think of
everyday words. To compensate,
you speak in awkward descriptive
sentences like, “can you pass me
a…a…little round dead cow?” at the
neighborhood barbecue when you
want a hamburger.
3. Your brain finally comes up with
right word but your mouth
has a mind of its own with random
semi-related words coming out at
unexpected times. Now that you
have your burger, your brain thinks
bun but your mouth asks for toast
to put on your hamburger.
4. You get used to your children
thinking you are being funny
while your friends, neighbors, and
fellow co-workers think you are
drunk, crazy, or suffering early
stage dementia whenever you
open your mouth to speak.
5. It’s a good day at work when the
only thing mismatched is your
socks. Although your employer
complains, at least they don’t
know about the time you drove
halfway to work in your pajamas
before realizing you weren’t
appropriately dressed.
6. You drive home from work and
realize you have no memory of
the ride home.
7. You find yourself at the
grocery store or mall with no
idea why you are there or what
you came to buy.
. 8. You can listen to the same old
gossip time and again as you have no memory of hearing
the story the first time round.
9. You are cooking and the
phone rings. You forget about
making dinner until the
smoke detector reminds you.
10. You decide to tackle chemo
brain head-on by making to-
do lists and putting them in
safe places. You
immediately forget where
those safe places are.
These are my personal top ten hits of chemo brain. I’m sure there are many more, but frankly I have forgotten them. Please let me know I’m not alone in my daze and confusion. I’d love to hear the funny and not so funny things chemo brain did to you in the comments below.
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In 2015 I had surgery to remove a brain tumor. Ended up having most of my right frontal lobe removed. In 2016, went through 6 weeks of radiation, then put on chemo pills. I was not diagnosed with cancer. Radiation and chemo were to prevent any regrowth of the tumor. Brain fog is very frustrating. I forget things, read things incorrectly, and just want to sleep.
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Omg!! Finally it’s been put out there and it’s real. Oh so real. Every single point you made I have – plus more. Even my kids tell people mum has chemo brain and can’t multi task.
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Interesting read. It sounds very much like the memory problems I have as a result of my dissociative episodes. This week I re-blogged and post to my own blog…later I left a great comment on a post only to discover that I had read and commented on the same post last week…no memory of it at all…Our brains are delicate and finely tuned organs…
I’m glad you have a sense of humor about it…
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Ha..ha..!! Nope, I don’t have one.
But really, reading this, chance is it’s either the.. (how did you call it again??) somehow does you good or it fails to confuse you for good. 🙂 🍸
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Lucky you :), thanks for sharing your experience. I loved it 🙂
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So, I don’t have chemo brain, but Lupus Fog is similar…I laughed out loud at “round dead cow.” Around here, we call it “losing your words.” One super perk is that I can watch movies and read books many times and enjoy them just as much the second (and third and fourth) time. Every time we rent a movie, as we watch the trailers, I look at Hubby. “Yes, we watched that one,” he says, before I can ask. In fact, that happened about 15 minutes ago…or was it yesterday…? So far, haven’t misplaced the kids (mostly because they won’t let me out of their sight) but I have gotten a couple of calls from school, “Just a reminder…today was a half day. You’re on your way, right?” Right. I’m on it. Just as soon as I find my keys…
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Lupus Fog sounds identical to Chemo Brain! I have also experienced the perks you speak of with movies, books, and music. Great fun. Thank God the kids make their own way home from school now!
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One part I really don’t like, because I like making people feel special–sometimes I forget names of people, even those I’ve known for years. Forgetting someone’s name is not a good way to show them they’re special!
I don’t know what it is about names; I can basically tell you the person’s life story, but I get very anxious if I have to call the person’s name because I’m sure I’ll get it wrong. When we go to gatherings, I’m reciting names to myself ahead of time.
I don’t know if you saw The Devil Wears Prada, but there’s a scene that stuck with me– they’re at a party and Anne Hathaway has a notebook with all the people’s names in it. As people approach her boss, she whispers the name to her. I need a person with a notebook to follow me around!
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What a brilliant idea to have someone around to provide the correct names or words when we have chemobrain raging in full force!This sounds like something most people who have had chemo would benefit from. Thanks for that great idea!
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Maybe we could create a facial recognition app! 🙂 Actually, that’s why I use Facebook; if I know I’ll be seeing a particular group or certain people are likely to be at an event, I go over faces and names ahead of time. It’s saved me several times.
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I am also a 4 time tnbc survivor (2004, 2006, 2007 and 2013). Other than the reconstruction issues, I definitely relate to everything you’ve said. I was not a candidate for reconstruction. My 1st recur was Mets to the chest wall. So, my skin is permanently fused to my underarm and rib cage. I suffer from the same side effects and take lots of meditation just to cope daily. I totally agree with you. And, what’s so hard is I never married or had children. The likelihood of my finding a forever mate feels grim. I am truly blessed to be alive. I never forget that. Even more so to have been given NED in August of 2014 @51. But, people just do not realise how old my body and mind feels. In fact, my latest diagnosis was spinal stenosis makes it even more difficult for me to walk. Between the osteoarthritis, back issues and doubled weight gain from fatique and medications, my onc confirmed that one session (standard 4 months) of chemo ages the body 20 years. So, truthfully I have no idea how old that makes me having had chemo 3 times involving 5-6 different types of chemo. Be strong my sister. I am grateful whatever my situation knowing so many of us have perished and have fought with everthing they are to be in my position. Knowing that doesn’t make the side effects any less painful psychologically or physically. But, yes, I am so very thankful to still be standing. Be blessed.
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I hadn’t heard the stat about each chemo session aging you 20 years. I know my first chemo at 34 aged my reproductive system about 10-12 years making it impossible to get pregnant while starting menopause at 42. I was married briefly but have been divorced about 10 years with no Prince Charming on the horizon. There aren’t many of us 4 time survivors around. I agree that given death is the alternative, I’m grateful to be alive. But this survivorship sometimes sucks big time too. Thanks for your comments here and on Facebook!
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I am also a 4 time tnbc survivor (2004, 2006, 2007 and 2013). Other than the reconstruction issues this is my story. See, I was not a candidate for reconstruction. My 1st recur was Mets to the chest wall. So, my skin is permanently fused to my underarm and rib cage. I suffer from the same side effects and take lots of meditation just to cope daily. I totally agree with you. And, what’s so hard is I never married or had children. The likelihood of my finding a forever mate feels grim. I am truly blessed to be alive. I never forget that. Even more so to have been given NED in August of 2014 @51. But, people just do not realise how old my body abd mind feels. In fact, my latest diagnosis was spinal stenosis making it even more difficult for me to walk. Between the osteoarthritis, back issues and doubled weight loss from fatique and medications my onc confirmed that one session (standard 4 months) of chemo ages the body 20 years. So, truthfully I have no idea how old that makes me having had chemo 3 times involving 5-6 different types of chemo. Be strong my sister. I am grateful whatever my situation knowing so many of us have perished and have fought with everthing they have to be in my position. No, knowing that doesn’t make the side effects any less painful psychologically or physically. Be blessed.
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You’re certainly not alone… I need sticky notes on the fridge to remind me that I have made notes, and where to find them. While my processing power and speech is often frustrating, I am grateful to hold on to most of my reasoning power, unlike my Mom who has Alzheimer’s. The one I notice the most is when I reread the same paragraph 10 times before any of it sinks in. 😦 Thank you for your list, Sharon, it’s always good to know we aren’t alone. xo
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Thanks Carolyn for sharing your experiences! Chemo brain is very frustrating. It’s the word and speech thing that still affects me the most too. I like you”re idea of sticky notes to tell you where the real notes are. I’ll have to give that a try.
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I cannot tell a lie…”chemo brain” was one of my biggest fears, and thankfully, I didn’t have it. Thanks for sharing and your sense of humor about it.
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Lucky you! It’s an experience I wish I would have missed too!
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I’m two years out from chemo, and the chemo brain is worse. My oncologist says it’s the letrozole. Whatever. I have it and it’s not getting better. Can’t remember conversations, reading is difficult (and I used to be an avid reader), can’t focus on things and multitasking is out of the question. Thanks for writing about this. The more we raise the issue, the more attention we get. Hopefully that translates into more research.
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More research is definitely needed to combat this problem. There are so many of us suffering from it in various degrees of severity. Thanks for reading and commenting.
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Yes, I still have chemo brain, or maybe it is just suppressed memories from the bad times. No, I’m still forgetful about things currently, so it must be chemo brain. I have a hard time remembering stories people tell me.
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Yes I have problems with that too. I draw an absolute blank on some things that others swear they told me earlier. It can feel pretty scary sometimes.
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Chemo brain is no joke. For me it’s having that “word at the tip of my tongue” moment, like all the time. When I’m teaching, at interviews…. Terrible. And forgetting details that people tell me and I have to ask again. I hated not being able to think enough to write my lesson plans or be creative. And if I did think of something, I couldn’t type or write it. But this all seems to be getting better…with two chemo treatments to go!
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Glad to hear that it is already improving even while going through chemo. For me, it comes and goes now but I agree the vocabulary thing is incredibly frustrating even if others sometimes find it funny.
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I find it interesting that I posted about this yesterday and found your blog today:
https://mstoywhisperer.wordpress.com/2015/03/01/cup-captain-100-word-challenge/
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Nice. Glad your cousin is committed to a world without breast cancer. I tried on a pink wig during chemo and looked sicker. The purple one on the other hand looked great! Thanks for reading and commenting!
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I didn’t have chemo but can relate to some of these memory lapses and brain confusions. My most frequent issue it transposing the first letters of words, my husband has to listen carefully when this happens because I often don’t realise I’ve done it.
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Some women on Facebook complained of radiation brain which is apparently similar to chemo brain. Maybe that explains it? Or just all the stress you’ve been under from your health and your husband’s health?
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I came across this site when I was looking around sites that came up when I googled “radiation brain.”
This particular page is called, 10 Things Physicians and Patients Should Question.
http://www.choosingwisely.org/doctor-patient-lists/american-society-of-clinical-oncology/
Were any of you told ahead of time to expect what you’re experiencing as a result of treatment? I know how I react when I slip a word or can’t pull out a Jeopardy answer that I know. Aging baby boomers have been warned that it happens, but I don’t accept that I’m aging.
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It seems so prevalent with cancer patients that it has to be more than an aging thing. I kind of knew about chemo brain the second time round but I thought it would go away shortly after chemo ended. It’s better than it was but is far from gone more than 3 years later.
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I’m four years out from chemo. Just glad it’s not as bad as it used to be. Most of it has gotten much better, but as you said, when I’m tired or stressed, it hits. It helps to laugh at ourselves and loved your list, but there are times when it’s not at all funny, such as when it happens at work and you feel like you’re not living up to job expectations. I’ve learned to depend on Google calendar notification alerts.
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My kids find it a lot funnier than I do. Work was not amused. I sometimes thought I was losing my mind. But it is certainly better than it was. I also try to keep all my appointments in my phone. Of course there are times when the phone goes missing and then I’m really screwed!
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Ovarian Cancer, Feb 2012 diagnosis, good stage nastiest kind of cell I could get (Stage 1A survival rate sans chemo would have been 50/50) … four rounds of chemo (the first was the first part of March 2012 and the last early May the same year) and I am cancer free and a survivor.
Yes, Chemo brain is real and it gets me especially when I’m tired. Still. Chemo is life changing in many ways, I am still figuring out my “new normal”. To others I still look like I have boundless energy, but I know much has changed. It beats the alternative but I still keep trying to be the old me.
So my favorites are the verbal issues that arise when the mind and the tongue just can’t get it right … I know what I want to say, I can SEE what I want to say, however the tongue’s interpretation thereof can be quite interesting indeed. So something as simple as “Use low sodium soy (sauce)” becomes “Lose so lodium joy” … sigh. It is funny if frustrating. I hate most the lack of ability to concentrate when I tire myself.
But, indeed, it beats the alternative. To all cancer survivors, kudos … only those who have been through it can truly understand, we look normal on the outside, but the inside ain’t the same and those changes are permanent.
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So true. When you no longer look sick, people are assuming you are completely back to your old self again. And you just aren’t. I’m glad to hear you are surviving, Chemo brain and all!
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Do you recover when you are done with chemo?
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No, it can last from a few months to several years but it definitely gets better with time.
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This is a perfect summation of me! I always forget that it’s the chemo and start feeling stupid. Thank you so so much for writing this!!
I have been having chemo for 18months on and off. The keys and phone thing is a big one for me (I used to be known for being well organised) also the shopping one…My fiancé will call me when I’m in the store and I’ll still forget what he wanted. I was involved in a minor car accident after having chemo one time (someone went into the back of my car so it was their fault) but I wonder whether my ability to make decisions was effected?
My fiancé proposed to me in the month we got diagnosed and haven’t been able to even set a date yet because I can’t make a decision, I can’t remember which venues I’ve been in touch with, I can’t seem to arrange a fry up in a cafe haha. Take care x
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It’s tough, no doubt about it. It takes time but it does get better. You could always elope and save yourself the confusion and chaos of planning a wedding. Just a thought from my chemo-addled brain.
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I relate most to losing the word I’m trying to say. I just remind the family of my chemo brain! Really, I trust this too shall pass!
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It definitely does get better with time. It will pass but it sure doesn’t stop when chemo ends. Actually you notice it even more then when some of the other visible signs of active treatment have faded. It hits me hardest now when I am over tired or over stressed. I do provide plenty of amusement for my teenage children who think some of my word choices are downright hilarious.
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Yes, the word is on the tip of my tongue and then you come out with something quite comical. It happens to me all the time and I am sure people either think I am crazy or a little spaced out. I do remember an incident recently when being invited to a dinner to meet my son’s girlfriends parents. It was asked if I had any fear of snakes etc around our house as we have a house in the Australian bush and snakes are part of life around here. I said without thinking that my husband has built me a safe enclosure which had everyone in raptures thinking he left me in a protected fenced area by myself. The more I tried to explain the deeper I dug myself in. so #2 and #3 are high on the list for me.
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Yes I’m getting known for some of my one liners and convoluted sentences when I am not trying to be funny or speak like I’m playing some verbal form of charades, with everyone yelling to guess the word I’m unable to say. As I say it is funny up to a point but then it starts to get a bit scary too. Thanks for sharing your snake enclosure story here. Your son’s girlfriend’s parents must have had some choice words to say about your husband!
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Hi Sharon,
For me, my short term recall took a hit. It’s still not totally back, but of course, some would attribute this to aging. I can remember stuff (certainly not all stuff, just random stuff) from years and years ago, but I can’t remember the name of the movie I saw last night. And recently it dawned me that I cannot concentrate as well since cancer when attempting to read a book. Since chemo, it takes me forever to get through a book. Must be lingering chemobrain, right? This is a serious topic and I’m glad the science is finally backing up what many of us have known for a while, chemobrain is real indeed. Thanks for the post.
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Mine was worst in the year after chemo and has been slowly getting better but it is far from gone. There are still the lost words when I’m tired and even worse, no memory of the conversations people insist I was part of, even though they were pretty mundane sounding conversations so the person has no reason to lie about my presence in them. I am hoping that things get better. I used to read a book a day although that slowed down once I had kids. I am nowhere back to that speed but I am getting faster. Some may be aging’s effects but other things like my convoluted sentences, have to be chemo brain. Thanks for an interesting perspective on the loss of reading speed that I hadn’t really considered before.
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Sharon,
I’ve experienced a few of your top ten w/o chemo.
#5 I avoid by buying only same color socks.
Great post from a great and needed sense of humor.
-Alan
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I do that for my son but need to do it for myself. I’m glad I made you smile.
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The details of this side effect is new info for me, too. “A little forgetfulness now and then” sounds like not much when it’s stated that way instead of truthfully, that it can be a real nuisance and spirit sapper. Are there memory exercises for it?
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Yes, it’s bad when we can’t even set up systems to cope because we forget about them! I’m still hoping to find my lists some day.
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They say to keep your brain active by reading or crossword puzzles. That is harder than it sounds when your concentration is flagging and you reread the same page over and over again. Time is the best healer of all. Thanks for commenting!
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In some ways 10 is the worst–because I’m trying to get a handle on it (yes, I lose my lists all the time), and then even my way of getting a grip backfires.
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Yes, it’s bad when we can’t even set up systems to cope because we forget about them! I’m still hoping to find my lists some day.
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As a nurse in Long Term Care, most of my patients have either dementia or history of stroke. So I pretty much always assume that’s the cause for memory and speech issues, but I can think of several (one in particular) patients who were also chemo patients. It would have been so helpful to have this insight to share with those families as they struggled with the changes. I will definitely keep this in mind in the future, thank you.
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You are very welcome! I’m glad this post was helpful to you. Thanks so much for your comments!
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Explains why I keep getting ‘window’ and ‘mirror’ mixed up!
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I can see how that would happen. They do have things in common. It does get better with time. Thanks for reading and commenting!
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well, I think I don’t have a chemo brain. maybe in some areas….Lol.
I am not forgetful.
nice post Greene
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Glad you don’t have chemo brain or at least aren’t forgetful! Thanks for reading and commenting.
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Hi Sharon
Lyme Brain or Brain Fog in doctor talk is very similar. It is worse for me since one of the viruses set up shop in my brain. It drives me crazy when I can’t remember the right word or what I meant to do. The craziness hits hard when I’m very tired or in lots of pain. One time I wanted a song for Throw Back Thursday, I could see the band, even a couple words. It took me a month to remember. Life can make us laugh to pull us out of the pit.
Take care. Hugs
M
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The vocabulary thing bothers me the most. I have had so many of those awkward convoluted conversations where I am trying to describe what I want as the actual word is temporarily forgotten. I didn’t realize it hit Lyme disease sufferers too. We can be sisters in confusion!
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This was all new information for me. I appreciate you sharing this with us that are not aware of this side effect. I admire the way you are able to find humor in this. I tend to be serious in nature so I notice when others are able to place a bit of lightness to a serious situation.
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I’m glad to hear that you found the information useful! These anecdotes do sound funny but they can also make you feel like you are losing your mind. Thanks for reading and commenting.
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My mom still has chemo brain. Whenever I get frustrated with her for not remembering something she looks at me with this big smile and says “Girl did you forget I have chemo brain?” lol. Love your post.
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Thanks Carissa! I understand your Mom’s forgetfulness all too well!
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I can definitely relate to #2, #3, and #6. I went to grad school part time when I had radiation (after chemo). Chemo brain DEFINITELY made it more difficult. I felt stupid sometimes when I couldn’t find the right words at all or had to describe things in odd ways (like your example). I still have those moments after being nearly 5 years out from diagnosis, but I am lucky that they are much less frequent. Thanks for sharing your list! ❤
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You are very welcome! My examples of odd descriptive sentences are legendary with my kids. They think they have the funniest Mom ever. No, just a touch of chemo brain.
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Do you know the commercial where the wife, who is developing dementia, loses her keys in the refrigerator? Her husband finds them behind the milk and turns to look at her with pity? Well, my husband says that he won’t be able to tell when I developed dementia because I’ve been leaving my keys in the refrigerator for 17 years! That’s when I had my first chemo. On the other hand, my Master’s degree obtained a few years later says “Mange Fun Laude,” so there’s hope for everyone. In some ways, I’m smarter than I was before chemo, in another ways, well, shoot… I forget what I was going to say. 😉
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Ack! Magne Cum Laude. Now that was my mobile, not my brain!
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Lol. I liked the Fun Laude. It sounded like a great degree to have and pleasurable to get.
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😎 See what bragging gets ya? Congratulations, all the same.
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Spell check, Chemo brain – they both make it harder to communicate sometimes!
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Yes, I worked as a lawyer with chemo brain both times. I could focus on the work but getting properly dressed was a problem. My kids won’t be able to tell when I have actual dementia either as I still lose stuff and say words I don’t mean to say. It comes with the territory I guess.
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Sharon. I had no idea, and really appreciate that you have shared this. I definitely do not want too come across as thinking someone is drunk, when in fact it is the brains reaction to the chemo they are having to go through.
Man, if chemo is not enough, having to go through this as well.
Thank you so much again for sharing this Sharon. Very important to know this.
~Carl~
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Yes, chemo brain can show up in lots of strange ways. For me, the vocabulary one was really hard to deal with. The word is on the tip of your tongue but either no word or the wrong one comes out. My teens still think I’m just being silly and funny on purpose but I’m really not. I’m glad this post was helpful to you and as always, I really appreciate your comments.
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Reblogged this on SURVIVORS BLOG HERE and commented:
I had chemo brain during my last attempt to reblog my previous post by reblogging to my own blog. Hopefully I am focused this time.
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