There were a lot of things about chemotherapy that I had wrong. Like apparently not all chemo regiments act like a diet plan, and not everyone loses their hair. But the most shocking of all was that chemo brain is real.

During treatment, I thought “chemo brain” was just something doctors kept referencing to make me feel like I wasn’t completely losing my mind. I assumed it was just some nice way of saying that I was dealing with a lot and so things would slip my mind.

When it finally started to catch up to me and became “chemo brain,” I figured that it would go away when the stress of treatment was behind me. But that’s not how it works. Like most things with cancer, it has a way of sticking around and invading all aspects of your life. Even today, chemo brain is still one of my most frustrating side effects.

Chemo brain affects me in three different ways:

1. I Forget Words: When I forget a word or can’t think of the word I’m trying to say, it can feel like I’m searching in a dark empty room for something that I’m not even sure exists and don’t remember what it looks like. When I’m writing and trying to find the right words, I don’t even know what to search for to find them. It’s a lot of stumbling, using placeholders, and rewriting. It’s frustrating because I can’t even remember the definition to help me find the word. I’ve started using certain letters or symbols as placeholders until I’m in a better state to review what I wrote.

2. I Can’t Remember What I Just Said: Please stop telling me that I told you the story I was just telling you three days ago. It’s embarrassing not to remember what I’ve said. I know it’s frustrating for you too, but please be patient. Please remember that it’s just as frustrating for me to keep repeating the same story and not even catch it until halfway through.

3. English/Grammar is Hard: I’ve always had an on again/off again relationship with grammar. However, post chemo (and even during) it seemed like a different language. Sometimes I feel like I’m staring at random symbols on my computer screen rather than words I’ve been using my whole life. It’s hard. It’s worse when it’s pointed out. I know it’s not malicious, but when you’ve been writing for such a long time and suddenly start to struggle to form a sentence, it can be a punch in the gut to hear you’re doing it wrong.

Chemo brain is very real, and it might not go away right after treatment. But I promise you can manage it.

Surround yourself with people you trust, and remind them to be patient. Try using tools like Grammarly if you’re struggling with spelling and grammar when you write. Stop multi-tasking (your brain has been through enough), and go for a walk when your brain gets overheated. Try playing games like Scrabble or Boggle to give your brain a workout, and keep yourself engaged rather than retreat.

Even though the treatment stops and the doctor’s appointments lessen, cancer survivors and cancer patients still have a lot to work through. Chemo brain is only one of the many common side effects that affect patients treated with chemotherapy. If you’re a caregiver, friend, or supporter, please remember to be patient and help your loved one out when they aren’t able to vocalize that they may need help.

Chemo Brain Stole My Title

8 thoughts on “Chemo Brain Stole My Title

  • April 19, 2017 at 5:29 pm
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    Not only do I find myself struggling to find the right words sometimes, but today I forgot how to do simple arithmetic. While trying to balance my checkbook, I absolutely forgot how to subtract without using a calculator.

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  • April 13, 2017 at 10:34 pm
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    You don’t know how glad I am to read that I’m not the only one that feels this way.. I’ve always said I had chemo brain but no one believed me!! And then I had a stroke and lost lots and lots of brain cells so really it’s a double whammy for me..But now I know for sure that I’m not alone in this.THANK YOU !!

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  • April 12, 2017 at 9:36 pm
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    How long after chemo does this last ?

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  • March 31, 2017 at 3:33 am
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    Oh my god. I absolutely struggle with losing my words and It’s. So. Frustrating, especially now that I’m back in the working world and trying to sound like I actually know what I’m talking about when with clients!! My silver lining – I’m so much better these days at finding different (and simple) ways to explain complex things 🙂 Weird that poor communication ability is making me a better communicator… ha.

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  • March 30, 2017 at 11:02 am
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    Thank you – there is so much – so, so much to grapple with…

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  • March 30, 2017 at 9:36 am
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    Any way I can get more info sent to me on this ! I went they six months of Chemo(cispaltin ,5fu) and 34 radiation treatments ! I suffer from this badly and my Chemo doctor says this is nonsense ! Please help

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    • March 30, 2017 at 9:48 am
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      Hi Joseph!

      I am so sorry your doctor doesn’t understand Chemo Brain! That must make it even more frustrating. Have you talked to your oncologist about it? My oncologist and nurses were the most helpful in recommending workarounds to help. For instance, meditating (I know..) helped me to step away when something got too frustrating – and meditating can be anything for you (listening to music with your eyes closed, going for a walk outside, or just shutting your eyes in a quiet space for a bit). You can also check out: https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/changes-in-mood-or-thinking/chemo-brain.html and mayo clinic also have some good information on it too! Be sure to remember that chemo brain affects everyone differently and for a different amount of times, so be sure to listen to your body!

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    • March 31, 2017 at 8:43 am
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      I have had this problem as well but my oncologist at UPENN said that they were starting to look at it as the anecdotal stories are just too overwhelming. The traditional thinking was that since the chemo wasn’t crossing the blood-brain barrier there seemed to be not physiological rationale for an impact on cognitive function. But it seems that at least some in the cancer care community were coming around in their thinking.

      It’s important to keep in mind that these guys are trained in a hyper focused manner relying intensely on empirical evidence for everything so it takes a lot for anecdotes to rise to the level of challenging their rather rigorous process of the science. When I told my oncologist that concentrated ginger tablets were more effective at managing my nausea than the multiple prescriptions he was surprised and didn’t realize ginger has been used for centuries to treat nausea. Again, they rely, as they need to, so heavily on rigorous R&D that its hard for them to embrace non-traditional treatments that don’t go through a rigorous study process even if they seem to work.

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