Driving, chemobrain, and respectfully acknowledging side effects

By | Mon February 6, 2017

While driving back from a nice long weekend at Yosemite, I found myself singing along to music while simultaneously navigating through an interchange of highway on and off ramps, to get to the right place. What struck me then, was that I must be getting back to some form of cognitive health.

Cancer plays havoc on your cognition. Furthermore, chemo can totally screw things up. Chemobrain is real! In reflecting on my chemo brain, I often used what I could or couldn’t do while driving as a gauge to how I was doing. At first, I couldn’t drive with music. Then I couldn’t drive with anyone in the car. One particularly scary drive was when I realized that I was relying on everyone else to not hit me, as I couldn’t react to what was happening around me. I knew then that I had to stop driving until I was done with that evil chemo regime.

But after chemo, and then surgery, I found my ability to drive come back slowly. First is was driving alone without music, then driving with music occasionally – like on the highway when I didn’t need to do any navigation, then driving with someone else in the car but no music, etc. So, it was amazing to find myself in a position of driving in the car, navigating through on-and-off ramps, and singing along to the music.

I was thinking also about one of my pet peeves. When I say something about “chemo brain” and someone dismisses it as “aging”. Like when I try to explain that I cannot find a word and they say “I have that too, it is just aging” … and then I need to explain that chemo brain forgetting a word is actually very different than aging. Age related forgetting (or actually the forgetting that happens to many people) is like a word is at the tip of your tongue. With enough concentration or thinking, the word comes to you. I get that too. But chemo word forgetting is different. It is more like the word is completely gone. Until someone says it, or until you read it someone else, it doesn’t just spontaneously come back to you. It is very different, and if you haven’t experienced it you will not really get it.

But the pet peeve isn’t so much about the lack of understanding of the actual thing – is it more the dismissing of my issue as if it were not important. It is said as a way to silence me (or the person saying it). So rather than acknowledging and saying something like “that must suck”, it comes across more like “stop whining” or “what you are feeling isn’t real”.

Unfortunately, too many of the challenges with being a young women who has had hormone positive breast cancer is that too many of my symptoms and challenges look like “aging”. They are dismissed as ‘aging’ related – by doctors, by friends, by family. It happens all the time. The thing is, I shouldn’t be having these side effects at my age! They are not age related! They are breast cancer treatment related. That is different. There may be nothing that can be done about them, but they are still there and they are still real. My advice to friends, family, doctors, etc. is to acknowledge it. A simple “that must suck” would do.

So, the cognitive declines associated with chemotherapy are starting to wear off. I’m starting to be able to deal with things that I couldn’t deal with during and immediately after treatment. Slowly things are getting better. Now, this off course is just in time for me to be going back on my next regime of hormone therapy – which blocks my body’s ability to produce estrogen, and mimics a lot of the symptoms of menopause but to a much higher, more severe degree. So, I will be experiencing a lot of what might look like ‘normal age related symptoms’, but they won’t be ‘normal’. They will be treatment induced. And if I complain or state that I’m having a challenge related to chemo brain or cancer treatment, don’t dismiss it, acknowledge it. Tell me it sucks, and then we can move on to having a normal conversation!

Feature image (c) Rebecca J. Hogue

2 thoughts on “Driving, chemobrain, and respectfully acknowledging side effects

  1. scottx5

    Categorizing by quick sorting seems to me to be a cogitative short-cut that substitutes for an authentic response. Or worse, a shut-down device. Saying I know the answer by sorting you into any plausible explanatory classification is close to saying your concerns don’t matter to me. There’s a danger here too for medical diagnostics when people start seeing relationships they don’t feel a need to investigate.

    This posting brought up a memory of a time when I asked about mental-health counselling at the main cancer centre and was told to see someone at the mental health hospital at the other side of the city. The impression I got was that my health was a scattering of “complaints” that were strangely non-local. This might be the outcome of specialization? To me, it feels like there’s no place where I’m known as a complete person. How can people see your uniqueness when they only know you by the parts convenient to their needs?

    Reply
    1. Rebecca Hogue

      Scott, I think you are touching on the importance of having a good primary care physician. One of the points of having a primary care physician is someone that does see you as a whole person – they are the physicians that refer you to appropriate specialists but also make an effort to understand the whole you (or at least they should). Unfortunately, Canada has a shortage of Family Doctors, such that you often are forces with taking whoever had availability rather than finding a doctor that matches well with your personality and needs.

      Reply

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