I’m a little angry

This post is going to be the start of a bigger series on people’s care after cancer or another major disease, focusing mostly on how we go on to live in a post-cancer body – now, obviously this is a completely different situation for individuals who have to live WITH cancer, and that is outside the scope of today’s post.

This week, scrolling through social media, I was struck by how much inventiveness and creativity the breast cancer community has. These small groups of survivors and current patients corral a lot of resources to share a number of things that breast cancer patients, particularly the newly-diagnosed, need. I was diagnosed in 2006 and some of that support already existed, like the Young Survivors’ Coalition, etc. But while it seems like the support community has grown enormously, it does NOT seem like the two-way communication between medical providers and patients has improved much, if at all. I find women who have the same questions I had, and having to turn to a Facebook group to get them. I understand that the American healthcare system can be lacking, as far as appointment length goes, but I am questioning why the hard work of helping women understand how to make the decisions around their bodies’ changes is falling to FB groups. As someone who is both a survivor and who has recently completed the CETI training on exercise selection & programming for cancer, I am highly concerned.

In my casual audit of the groups that I’m in, the majority of women who opt for reconstruction aren’t given enough information about the time between the cancer surgery and the eventual reconstruction surgery. And when I work with my mom, another breast cancer survivor, and assess her shoulder range of motion and hear her stories of performing physical tasks in the years after her mastectomy, I am annoyed all over again that the physical toll on the upper body was NEVER spelled out. 10 years later, when my bilateral mastectomy happened, it was the same story. So to see that the same state of affairs continues now to a similar degree, it saddens me beyond measure.

Yes, we know that once there’s a diagnosis, all we have a range of bad options. And yes, we know that a post-treatment body won’t be the same as the body before. But beyond that, what I’ve seen is that women are given 2-3 bullet points about radiation, 4-6 about lymphedema, and a couple of preachy handouts with very rudimentary exercise information. If we’re lucky, we encounter a physical therapist in the early stages who fills in a lot of the blanks. I went to a physical therapist, but wasn’t as lucky… I came out of the experience knowing little more than I went in with.

My pledge to anyone I work with that has gone down this same path of cancer is that I will not only help you understand your own personal range of motion and help you get stronger and gain the other benefits of exercise, like less fatigue and better sleep, I will also help you understand how you’ve changed, and wherever your need for information exceeds what a personal trainer is qualified to give, I will find you someone who can answer it for you.

As I said, this is only the beginning of this exploration of how to help women contend with functional changes to their bodies that goes beyond the mechanism of the breast itself. In coming weeks, I’ll be working on adding a resources section for women to utilize for finding avenues of help & greater knowledge. Stay well, friends.

Love,
Tina