Cancer Related Brain Fog: How do you cope with it?

I’m 68, the worst for me is that my son told me that I have dementia. That really hurt. My husband doesn’t really understand either. I KNOW that for me, the drugs that I must take to prevent recurrence of breast cancer causes brain fog.

Each of the hormone drugs I’ve taken to prevent recurrence suppresses estrogen, and low estrogen causes brain fog. I can only describe it as permanently being ‘menopausal’ with no end in sight.

Anastrozole was the worst for me. I’m currently on Exemestane and that’s better, but I’m still not my former self. My regular doctor specializes in geriatrics and I told her about my son’s observations of dementia. She put me through all sorts of testing for my mental clarity, including a brain MRI. She found nothing that could indicate dementia. Or anything wrong with my brain at all.

But now, I’m so self conscious of making any kind of a mistake that I just stay home by myself where I’m comfortable, without anyone to criticize me for my brain fog. I’ve come to love my alone time! I’m most comfortable and feel like myself just being alone. When I do go out I stay to myself as much as possible.

I’m 68, the worst for me is that my son told me that I have dementia. That really hurt. My husband doesn’t really understand either. I KNOW that for me, the drugs that I must take to prevent recurrence of breast cancer causes brain fog.

Each of the hormone drugs I’ve taken to prevent recurrence suppresses estrogen, and low estrogen causes brain fog. I can only describe it as permanently being ‘menopausal’ with no end in sight.

Anastrozole was the worst for me. I’m currently on Exemestane and that’s better, but I’m still not my former self. My regular doctor specializes in geriatrics and I told her about my son’s observations of dementia. She put me through all sorts of testing for my mental clarity, including a brain MRI. She found nothing that could indicate dementia. Or anything wrong with my brain at all.

But now, I’m so self conscious of making any kind of a mistake that I just stay home by myself where I’m comfortable, without anyone to criticize me for my brain fog. I’ve come to love my alone time! I’m most comfortable and feel like myself just being alone. When I do go out I stay to myself as much as possible.

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance is being scrutinized even though I work my butt off and always have more than 40 hours. I do have trouble concentrating and have to re-read lots of things, and my work is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless ... all converge with my cancer related crappy syndromes and numerous symptoms and wreak havoc on my mental and physical health. One of the worst things is when people just don't understand or think you just make up stuff, or when very uneducated healthcare providers act like human brain is just a myth.. actually had a neurologist tell me that it's not real and Lord forgive me but I wanted to physically harm him.. just saying. I have discussed time and time again the issues with my doctors and like many symptoms patients talk about doctors just brush it off or don't really consider what it might be like to actually have to live with these kinds of issues. My whole life is completely disorganized. Stupid post-it notes don't work because I have thousands of freaking post it notes posted everywhere. As an example, one time I had three pocketbooks. Who uses three pocketbooks at the same time? My credit that I had worked so hard on is practically ruined because of forgetting to pay bills on time. I've missed countless appointments for lots of things because I was too tired or couldn't wake up despite having 5,000 alarms set throughout the house. What can I do, I am pushing through but I can't make it like this. I don't know where to go, who to see, or if there is even anything that can be done. I've researched tons of articles and so forth and I just don't feel hopeful that any progress will be made in the near future because nobody even takes your complaints seriously so we know they're not properly reported and studied. I know that my job is trying to get rid of me even though I know but I want to do hardest workers alive. I am sure I need to ask for some sort of accommodations at work but what do I even say and what if they don't agree to anything? I just don't know what to do. I literally just get sick going to work sometimes. Im just so stressed and just out right down in the dumps. my freaking joints ache, my left chest wall always hurts EVEN THOUGH IT'S COMPLETELY NUMB where I had lymph node dissection or itches so bad that I look like I have a flea infestation.. haha . I'm always self-conscious because I feel people think I'm dumb because I literally have to ask them sometimes three times in a row what they just said. Is there anyone who can give me any advice. Please. Thank you.

@chemosavedandruinedmylife Welcome to Mayo Clinic Connect.I can tell that you’re having an extremely difficult time. And the doctor’s comment was out of line. You have dealt with cancer, surgery,chemo, and now a stressful job. This article talks about brain fog and mentions a few things that might help.
https://www.healthline.com/health/brain-fog#what-is-brain-fog
1. You might make an appointment with your PCP and ask them to include the bloodwork mentioned in the article.
2. Also ask for a review of your medications to determine if any of them are causing your problems
3. https://connect.mayoclinic.org/discussion/dealing-with-brain-fog/ Patients with autoimmune diseases can also experience brain fog. Check out this discussion in the autoimmune support group for some tips and hints.
4. Talk with your PCP about the amount of stress you feel and how it is impacting your job. You are a strong woman who has been through so much and now you need help
Can you call your PCP and get an appointment

I have given myself permission to space out, honor my exhaustion, and be utterly useless for now. Despite 2 graduate degrees, English and Law, I often find complex reading too taxing during chemo. So I watch old B movies I've never seen before on Youtube. Or I listen to audio books. If all I can handle one day is 1.75 loads of laundry, I stop. At 63, I'm already used to having to write stuff down because my memory is not what it once was. I give in utterly to what is for now.

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance is being scrutinized even though I work my butt off and always have more than 40 hours. I do have trouble concentrating and have to re-read lots of things, and my work is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless ... all converge with my cancer related crappy syndromes and numerous symptoms and wreak havoc on my mental and physical health. One of the worst things is when people just don't understand or think you just make up stuff, or when very uneducated healthcare providers act like human brain is just a myth.. actually had a neurologist tell me that it's not real and Lord forgive me but I wanted to physically harm him.. just saying. I have discussed time and time again the issues with my doctors and like many symptoms patients talk about doctors just brush it off or don't really consider what it might be like to actually have to live with these kinds of issues. My whole life is completely disorganized. Stupid post-it notes don't work because I have thousands of freaking post it notes posted everywhere. As an example, one time I had three pocketbooks. Who uses three pocketbooks at the same time? My credit that I had worked so hard on is practically ruined because of forgetting to pay bills on time. I've missed countless appointments for lots of things because I was too tired or couldn't wake up despite having 5,000 alarms set throughout the house. What can I do, I am pushing through but I can't make it like this. I don't know where to go, who to see, or if there is even anything that can be done. I've researched tons of articles and so forth and I just don't feel hopeful that any progress will be made in the near future because nobody even takes your complaints seriously so we know they're not properly reported and studied. I know that my job is trying to get rid of me even though I know but I want to do hardest workers alive. I am sure I need to ask for some sort of accommodations at work but what do I even say and what if they don't agree to anything? I just don't know what to do. I literally just get sick going to work sometimes. Im just so stressed and just out right down in the dumps. my freaking joints ache, my left chest wall always hurts EVEN THOUGH IT'S COMPLETELY NUMB where I had lymph node dissection or itches so bad that I look like I have a flea infestation.. haha . I'm always self-conscious because I feel people think I'm dumb because I literally have to ask them sometimes three times in a row what they just said. Is there anyone who can give me any advice. Please. Thank you.