Someone posted this video in one of the breast cancer support groups I’m in. (More on the double-edged sword of these Facebook groups later.)
Wow. So much covered in a short few minutes in this video. The accuracy. Every thing she talks about in this video. All of it.
There’s really something to have someone who has been through a similar situation describe what they experienced and to feel that deep recognition - to feel completely seen and understood.
Ever since the day of my diagnosis, I have been searching for their stories - the stories of the people who have been there before. Who are part of this strange fraternity.
And please don’t get me wrong - the love and encouragement from those who haven’t had cancer absolutely lifts me up and sustains me. But to hear from someone who has been there? It’s just different.
I take in their advice and wisdom like water soaking in to sand. Even if it’s something I’ve heard before, I hear it differently from someone who has been there before.
The hard part of all of this is that every story is different. It’s easy to forget that in the beginning. In the beginning, I thought I was looking for someone else who had exactly the same type of cancer and path that I did. I thought I would take notes and study everything they did to make the roadmap for myself. But I’ve also learned that this isn’t possible. Which is quite possibly the worst possible thing in the very beginning. You know so little about your situation or what your treatment plan will involve.
This is the damn curse of cancer, especially (as I’m finding) with breast cancer. I’ve been told that there are something like 20 different types of breast cancer. And each one, combined with your age and your specific history and situation determines a completely different treatment plan.
So my search for other people who had the same kind of breast cancer as me - the same stage (II for me), the same type (invasive ductal carcinoma, ER/PR +, HER2 -, lymph node involvement) in other 40 year olds - well, the search has still come up short. It means, for better or worse, that I am the one who will have to determine my roadmap. In the beginning, that felt terrifying.
Now that my treatment plan is largely put in place (with, of course, room for course adjustments as needed along the way) I don’t feel the same desperate need to search for stories in the hope that someone else will write the roadmap for me. I have been on this steep learning curve, but so far, I’ve kept up. And I feel confident in the plan we’ve put together and the choices I had to make as part of it. (Read this post for more on the current plan.) Now that I think about it, that’s really something.
And I do still look for others in this fraternity and listen to all that they have to share. Each of them is a lighthouse for me. And that is my ultimate goal with sharing this journey, even though I don’t know where it will go. Perhaps I can be a lighthouse for someone else.