Just a quickie, because I’m in the middle of some things.
I’m at a conference for online health advocates (more about that in a few days), but yesterday afternoon, I had the opportunity to meet with a bunch of cancer advocates. A few of them are blood cancer patients and survivors, but they represented a bunch of different types of cancer.
We started by telling our stories. What was so amazing was how similar those stories were. It didn’t matter what type of cancer they had, or how old they were, or where they were from. They all got a cancer diagnosis, and looked for help, and couldn’t find it — at least not from someone who was like them. As one put it, everyone felt “not just fear, but loneliness too — the worst things that can happen at the same time to a person.”
Eventually, they found what they needed (for some of them, that meant creating a community themselves where others could turn — these are online advocates, after all).
But hearing them all speak made me really think about how important it is to connect with other patients, to find a community. It means so much to go online and read about someone else’s experience and think “Hey — it’s not just me that’s going through this.” There’s something really powerful about realizing you’re not alone.
So this is your reminder to find a community, someplace you can share. Or at least listen, if sharing is hard.
Cancer is not easy — we all know that. There’s no need to go through it alone.
And while every cancer is different, Follicular Lymphoma has its own weird things going for it. And one of them is that we can go a long time without having to think too hard about it. At those times, it’s fine to not think about it.
But then, there are times when it’s always there, right in front of us. At diagnosis. At recurrence. After treatment. Or just when it seems like there just might be something going on.
And those are the times we need to make sure we don’t try to go it alone. That’s when we need community.
Don’t forget that.
And if you can’t find someone to share with, just email me. I’ll listen.
Enjoy your day.
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2 comments:
There are several Facebook pages dedicated to fNHL that I have found to be very helpful. On those pages, you hear it all-the good and the bad, so it can be distressing too.
Hi Carolyn. I agree — some good stuff on FB, especially when people share their experiences with treatments. It’s always nice to connect with people who have gone through the same thing as you. Sometimes I read things on FB that aren’t accurate, and I worry about people getting wrong information that might hurt them instead of help them, but I hope people talk about anything like that with their doctors (and that they don’t avoid seeing their doctors because of something they read online).
Thanks for passing on the tip.
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