Since the start of my chemo treatments back in December of 2016, one of the things I have struggled with has been a fogginess living inside my mind—chemo brain, if you will. During treatment my family and I joked about my absentmindedness, made light of my 'chemo brain' because in my mind....I was in treatment. It’s supposed to go away, right? Well, not so. As the last year has progressed so has my 'chemo brain'. I'd like to touch on a few aspects of this fogginess: my battles with it, what the medical community is saying, and the support that is out there.
For me, chemo brain is triggered. It affects my daily life but not in a completely debilitating way. I was shocked to hear how debilitating it can be for many others. For me, its very frustrating and a complete annoyance. But for others it truly takes over their life. I notice many more forgetful times and times of losing my words now than before treatment. Many times words come out of my mouth before I can even filter the 'right' word. Or I am tongue tied and have a hard time just saying what I mean. I also notice an intolerance for those talking AT ME. I need it all to slow down, I need words to stop repeating (mom mom mom mom is a huge trigger), I need multiple conversations to just be one voice at a time before my head explodes. Also my evenings hit a complete "WALL"...... oh dang that wall comes up and I am—BAM!—irritable. My brain can’t keep up with my life and I feel like if I don't lay down to relax or sleep in peace and quiet, I'm going to, well, explode. Yeah, I know, I’m a ticking time bomb. Lots of potential 'exploding' apparently lol.
At one of our support groups with Cancer Cares Sacramento, we discussed chemo brain and one of our leaders Denyse brought up 'triggers'. I hadn't really thought about that until she said it. I can definitely pin point mine now, stress and my diet. When life is extra stressful or out-of-control hectic, my brain is majorly affected. When I'm not eating well or exercising routinely, it's definitely worse. For others, it may be many other things, but the solid fact is, it’s truly real!!!
During that same support group meeting, Denyse made a comment that was dead on. Ask 10 different doctors about 'chemo brain' and you will get 10 different answers. Ask 10 different patients and you will get 10 same answers! So true! There is so much unknown about the affects of cancer, chemo, radiation and treatment in general on the brain and why so many of us end up with some level of 'chemo brain'. There are articles out there talking about whether chemo brain is really just from chemo or could it be the cancer itself and the affects of the immune system while trying to fight it. There is so much to be understood and the fact is, it happens and we can not allow anyone or anything to lessen what we are going through just because it’s not 'understood'. We live it every day and maybe we can be a voice that brings it to the forefront and gets heard!
If I had a huge scar indicating an injury, no one would question that injury. But because this is happening inside my body, in my brain, from poison that we had to have put in our bodies to fight a killer, it's not so real to others. That's hard. That definitely hurts.
I read articles constantly about this subject. I obviously want to learn and understand but sometimes I'm looking for reassurance that I'm not just 'crazy' or being a 'jerk' lol. I've joined a Facebook group called Chemo Brain Awareness Group and it's a wonderful supportive community. It's nice to bounce things off one another, read posted articles and share our thoughts. Just like cancer support groups, it's nice to interact with those who are actually experiencing the exact same affects.
The research is slowly happening but for those of us that live it right now, everyday, its not coming fast enough. BUT I do truly believe if we give it a voice, give it a face, we can bring it more to the forefront of our journey and continue to provide care to those battling even when the "treatment" is over. Whether it be in a medicinal way, neurological rehabilitation path, or holistic approach—it all starts with recognizing its existence and the struggles it can create. Whatever it may be, we need it to be just as real to our medical and social communities, as it is to us!
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