Trying to understand my friend's chemo brain: How can I help?

Posted by charp @charp, Sep 1 11:12am

my friend finished treatments 1 1/2 years ago but has chemo brain and I am trying to figure out how to help. Do I just accept that she's not the same or do I push a little? I don't want her feeling ganged up on but not sure how to handle.

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@charp, this is such a good question. It can be so hard for someone who hasn't had cancer or chemo to understand some of the long-term effects treatments can have. One of the hardest to really comprehend or even accept is chemo-brain.

Chemo-brain is real and I'm so glad that you recognize that and want to help. But what is helpful? Do you fill in missing words? Do you encourage them to do brain exercises? What can you do as a friend?

I'm going to tag helpful members who have experiences chemo-brain to let them share from their perspective what chemo-brain feels like and to share ways family and friends helped them. I think @auntieoakley @crazyhazy @lisman1408 @cfacarol @elizm @carlies will have thoughts.

In the meantime, you might also find this discussion from the patient perspective that @roch started a little while ago.
– Cancer Related Brain Fog: How do you cope with it? https://connect.mayoclinic.org/discussion/cancer-related-brain-fog

Charp, do you find her chemo brain is more obvious at certain times of day or when stressed or anything else?

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Not necessarily. Just has more of a paranoia about things. Doesn’t call her friends but periodically will text. Not spontaneous anymore. Things she would have done without question is now a struggle. She doesn’t understand my frustration or disappointment

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@charp

Not necessarily. Just has more of a paranoia about things. Doesn’t call her friends but periodically will text. Not spontaneous anymore. Things she would have done without question is now a struggle. She doesn’t understand my frustration or disappointment

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Hi @charp , I am sorry your friend is not the same anymore. It is difficult when relationships change. I have dealt with chemo brain for more than 15 years. I have learned to be more patient with myself, than in the beginning.
When I was first diagnosed, the doctor kept saying, I needed to take care of this and then life would go back to normal in about a year. I kept waiting and hoping, but my pre-cancer normal was gone for good. With that realization came some depression and big decisions regarding my businesses, and yes even some of my closest relationships.
I can’t speak for your friend but I can say that pushing me was unhelpful, I was already very hard on myself. If you really want to spend time with you friend, could offer to go to her and visit, maybe bring a special lunch or desert. Realizing she can be herself with you, even with changes might go a long way towards helping her feel comfortable enough to to start coming out more with you again.

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@charp

Not necessarily. Just has more of a paranoia about things. Doesn’t call her friends but periodically will text. Not spontaneous anymore. Things she would have done without question is now a struggle. She doesn’t understand my frustration or disappointment

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@charp I have been an active chemo patient for over a year now, due to a blood cancer diagnosis.

First, welcome to Mayo Clinic Connect. I am happy to read you care about your friend, and your relationship with her. And that you want to figure out to make it as good for everyone that you can. We all need friends like you!

Chemo brain is a real thing, losing my path in a conversation, or even mid-sentence. I take extra time to formulate and respond to questions, sometimes to the frustration of others. I find myself writing more notes down, not trusting my memory as much anymore; of course, that could be due to aging, also! It gives me comfort to write things down.

As a chemo patient who is going through cancer for the third time, plus working with additional serious health problems, I'd like to also mention something I have discovered. When we have "an awakening" or whatever you choose to call it, we often go through an emotional and mental process of rearranging our priorities, our manner of doing things, and how we interact with others. Sometimes we don't look like we used to, and that affects us. Sometimes our energy levels never go back to where they were, and we need to decide what has priority. Sometimes what was important before in our lives [like social situations of all kinds] just don't seem to please us as much. Maybe someone said something that hit us wrong, and we find it better to just not interact rather than hear comments we don't want to hear.

Be there for your friend. Like @auntieoakley mentioned, meet her for a quiet time together, see if there is something she would like to do. She may not realize how it affects you, and as your friend, she probably would like to know. Gently offer your support.
Ginger

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I was fortunate to not need chemo. but rather had surgery to remove the tumor and then radiation. My problems come from the medications we need to take to prevent cancer recurrence. I started off with Anastrozole, and it was a disaster causing severe brain fog. My doctor switched me to Tomoxifin, and I broke out in hives. It seems I am allergic to something in the Tomoxifin.

I am now on Exemestane, and it’s better, but I still have some brain fog severe enough that I have recently been diagnosed with MCI, mild cognitive impairment. I don’t know for sure if the MCI is related to my breast cancer meds; but I absolutely know for sure, that I think much more clearly when I take a break for a month or two from my cancer medication. I now avoid social situations whenever possible so I don’t make a fool of myself. I am an avid gardener and love to read, my time alone is rich with activities that I can enjoy all by myself.

I’m hoping with some time your friend will feel more comfortable. Accept her just as she is, but don’t give up on her. Let her know that you love her regardless of any challenges she may be facing. Your friendship and acceptance might just be what she needs most.

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I went thru breast cancer treatment from 2018 – 2019. Afterwards you hope life would go back to normal, but it is rarely the same. The meds to prevent reoccurrence (AI) left me depressed and with chemo brain. It was so frustrating ! I eventually stopped taking AIs. I did this after discussion with oncologist about pros and cons of medication.

During cancer treatment, I isolated due to weaken immune system and lack of energy. Just about time ready to restart life, COVID hit and everyone isolated. So after 4 years with limited social interactions, it is sometimes hard to step outside my comfort zone and join the rest of the world.

There may be many reasons for isolating, chemo brain, medications, lack of energy or depression.

Do not give up on her, stay in touch with her. Suggest small things, lunch, take a drive, short visits, etc..

Laurie

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Thank you all for responding. This has helped me and I will share with our friends that have been concerned. I appreciate these comments

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@charp

Not necessarily. Just has more of a paranoia about things. Doesn’t call her friends but periodically will text. Not spontaneous anymore. Things she would have done without question is now a struggle. She doesn’t understand my frustration or disappointment

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@charp, I can understand your frustration and disappointment in the changes. You, too, have lost something that is dear to you – your friendship as it once was. That’s hard and you are mourning that. I get it.

I bet during her diagnosis and treatment, you (like her) were in the busy mode of “just getting through” and imagining that “once this is over, we’ll be able to ________again.”

As you look for ways to support your friend, I just want to acknowledge that you need support to. Be kind with yourself as you realize and accept that the road ahead still has bumps in it.

It sounds like your friend may be experiencing some cancer-related depression as well as brain fog. She might want to get some qualified help from someone who understands cancer, like a oncology social worker. Support from an oncology social worker can extend to you too.

You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

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@charp

Thank you all for responding. This has helped me and I will share with our friends that have been concerned. I appreciate these comments

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@charp How lucky this gal is to have a group of friends who are concerned about her. My guess is she will feel blessed and be willing to share her struggles with you.
Ginger

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