One of the things I've been doing a lot lately is attending support groups. Why? For support, of course! I've learned a lot from going. Whether it's terms and language I am hearing for the first time and researching after, whether its treatments that people are undergoing or have undergone, or it's side effects or surgeries, there is a lot to learn from the people who attend the groups.
One thing I've found is that, although I learn a lot, I have also spent a lot of time listening to people about their disease and treatments which are very different from mine. The groups can also be very clinical in nature. More people talk about treatments than they talk about how they feel about the treatments. Does that make sense? I know I am somewhat soft and fluffy but i would love to find a group (or start one) that deals with what its like to have cancer. Cancer is much more than just treatments, there's a treatment AND an experience component (more on that in another post).
I have also learned a lot about how different doctors approach NETs. Some jump to surgery immediately, some go to chemo, others put patients into clinical trials. NETs is a rare form of cancer (although becoming more common) and is often treated differently depending on who is doing the treating (and yes, there are treatment protocols from NCCN (National Comprehensive Cancer Network)) but the modes of treatment still vary.
The groups also help you figure out if the organizing organization is aligned with you. If you are bored in the group or you don't feel that what you are learning is relevant, maybe the org isn't for you.
The good news is that I am making friends. People with my sense of humor, my energy level, my diagnosis, etc and that makes attending the groups worth it for me.
So none of this is to say that support groups aren't valuable! Not at all. I am just trying to find those that are most valuable for me. As we all know, this is not a one size fits all world and NETs is definitely a one size fits one type of cancer!