Neuropathy Finally Gets Some Notice

I can’t believe it. I can’t believe it.

For years, I have watched new cancer studies, hoping to see one on peripheral neuropathy for women like me who were treated for early-stage breast cancer.

About six years after my treatment ended, my feet began to swell and were so painful that I was going down the list of painkillers trying to get relief. I finally gave up trying to figure it out and cure it, and have been on methadone since around 2000.

It is true that when your feet hurt, the world is just not the same.

I now wear orthotic shoes that help, and with the painkillers, I can get around as long as it does not include long walks or long days on my feet. My feet are double-wide and finding shoes has been a nightmare. I have tried electric shock, different kinds of drugs and every other conceivable cure to no avail. My feet hurt all the time and a few years after my feet began to hurt, I noticed I could not clap anymore.

I wrote a story on neuropathy for CURE a number of years ago, looking at which drugs cause neuropathy and all possible drugs and natural cures. Acupuncture does help with the pain, but has to be repeated frequently and at around $100 a pop, is just not sustainable.

I also now cannot clap because my hands hurt so much.

Part of my frustration has been the lack of information about the whys and hows from the cancer community. There has been a slow recognition that some specific new drugs cause neuropathy, but it seems like no research has looked at those of us treated many years ago who did not get those drugs.

Finally, not just one but two studies have shown up. They don’t say much except that we need to know more about neuropathy for women treated for early stage breast cancer. We don’t know much about it and there is no treatment, but they confirm I am not crazy. They confirm that other women treated for early stage breast cancer have neuropathy. And that it gets worse over time.

I know that some women have peripheral neuropathy as a late effect, or something that shows up after treatment ends. I have been willing to concede that I am an anomaly, and that my neuropathy is not normal if someone would tell me what to do about it.

I would love to be able to wear decent shoes and clap at the end of a performance. I’d appreciate anything that works just a little. In addition, it would be great if someone could tell me how to keep it from getting worse.