QOL FastBlast!: Neuropathy
A recent illness got me thinking about this nebulous condition.
I feel like I’ve really fallen behind on my Substacking— not just writing, but reading some of “my” people here. It’s weird to feel behind on something that’s supposed to be fun but as my pal
wrote very recently. “it is what it is” or as I may put it, “here we are.”So here we are. The thing is that I’ve been under the weather this last week and been pretty obsessed with other projects. So feeling gross and having other priorities means some things get put on a shelf. This one won’t be long, but I feel it’s necessary in keeping the momentum going in this long term project.
Neuropathy isn’t something that’s super common with brain cancer as far as I know, unless you embrace the most general definition of “weakness, numbness, and pain due to disease, injury, infection, or exposure to toxins.” Most people think of it as simply a feeling of needles and pins in extremities like hands and feet. But technically speaking, it’s more than that.
Other than issues of limb weakness and numbness, not many (or any) brain følken that I’ve met have to deal with regularly annoyingly tingly bits that folks most complain about. Yet, this week, I experienced it more strongly… likely due to sickness and fatigue. As my fever has waned, so has the neuropathy.
I’m also pretty sure that what I experienced was pretty minimal. I’d describe my neuropathy very much like pins and needles poking at some sensitive areas of skin. I think many who haven’t experienced it assume it’s like pins and needles going into the body , but it’s really more like poking out from within.
The reason so many cancer patients experience neuropathy (it’s also common with diabetics, spinal injuries, and certain medications) is simple: we’ve been sliced and diced with reckless abandon in an attempt to preserve life. Sometimes a nerve gets beat up in the process. Also we are given some pretty serious toxins in the form of chemo and radiation. As science becomes more precise, I’m sure the rate of neuropathy will reduce.
But here we are.
And since this is where we are now, why should most reading this (who don’t deal with it) care?
Neuropathy can cause a ton of issues in mobility and general motivation to get up and about. I mean, would you want to go to the gym when your feet are uncomfortable to walk on? And then consider folks like me, who don’t get the needles and pins in their fingers, but in their eyes? It’s a major quality of life inhibitor. Even if it doesn’t impact you directly, I’m pretty sure you know somebody it impacts. So hopefully that perspective might help some understand why some folks dealing with it act the way they do. It doesn’t validate negative behavior but it makes it understandable so maybe others will be slower to label someone as lazy or a negative jerk and more likely to help them work around the issue.
There are a few medications out there to deal with neuropathy with the biggies being Gabapentin and Pregabalin. Neither is really 100%. They work for some and not all for others. I was on both early in my “cAnCer JoUrNeY” for some issues and both made me feel more gross than anything.
Like I wrote early on, neuropathy is a nebulous condition. Like how some feel it in their toes, while I feel it in my eyeballs. Yes, my eyeballs. Good times when your kids or spouse want you to look at something. Fortunately, that never happens, right?
As far as treatments, compression is the same as the drugs- it helps some, others not so much. I’m not a huge cannabis/cbd as medication guy, but it is one area where there is a ton of research backing it up for that and patients who swear by it to get through rough patches.
I really wish I could get more philosophical on this one, but it’s a really minimal part of my experience these days. Early on, it was a top 3 complaint, just not anymore. I‘m not sure if I’ve just learned to manage it or ignore it, but I know it’s a much bigger deal with other cancer types so I wanted to bring it up. I really feel the normies don’t really get it. I only get it to a certain degree but that’s been enough to let me know that I needed to share what I know.
Thanks for your explanation of the condition. People who don’t experience neuropathy may be clueless, but willing to learn about it.
Our bodily sensations shape us, and our relationship with the outside world. We all instinctively understand why someone will not take a stroll when it’s cold outside because that’s a shared experience. Our inside sensations are as real to us as the outside world.
Others may lack the physical understanding of something they didn’t lived, but can grasp the feelings on an intellectual level.
Your article reminds me of a writer who famously let his fingernails grow so long they curled. When asked about it, he responded the tip of his fingers hurt when he touched something, and his fingernails protected him. It is now speculated he suffered from neuropathy.
Take care.
This definitely helps. Every time I read one of these first hand accounts, I feel like I understand what you're going through a little better than before, although I'm sure there is still a wide gulf between description and experience.
Hope you're feeling better this week! Neuropathy sounds like a pretty big inhibitor when it flares up like this.