Chemo 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.
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.
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….
I was diagnosed in August 2016 with stage 2 breast cancer that had spread to my lymph nodes. My diagnosis was ‘Poorly differentiated invasive ductal carcinoma’ – breast cancer in the right breast, and ‘Metastatic carcinoma involving a lymph node..’ – it had spread to at least two of my lymph nodes. My chemo treatment was administered in two rounds. First, twelve weeks of a combination of Taxol and Carboplatin, infusion every week. Then, a one week break. Followed by eight weeks of Adriamycin (AC) and Cytoxan, infusion every other week (four treatments).
I had no idea what to expect from treatments other than the hair loss that everyone associates with chemo. I fully expected to beat the disease, and I did.
Throughout my treatments and recovery, I began documenting the things that the doctors don’t prepare you for so that I can share with others what to really expect. As much as I don’t want others to have to experience what I did, I hope my writing can help.
One day I hope all my helpful advice and tips will be published in a book… that is slowly coming together.