Colleen Moretti: Some patients may feel they can only be involved in one advocacy group – can you debunk this myth?
Terri Conneran: It’s so important to realize that you can’t get all your resources in one place. You have to start and just connect with other people. And so I wanted to see for myself what different resources I had and so I went and got involved with more than one lung cancer organization. Because if you only give me one set of information, I can’t check and weigh it. It’s the same way you don’t date first person and marry first person at the same time, right? You have to be able to get a little bit of checks and balances and every place has a different kind of feel to it. So it’s fine to have your own individual cross-pollination. Because I wanted to get the information from the different places, because it just works that way. You don’t just have one friend, you have a friend that you want to go see movies with, you have another friend that you might want to talk about politics or weather or the kids with. So you have to connect through the app and get that kind of information.
Moretti: What might patients be missing out on if they don’t expand their network?
Conneran: You’re missing out on more friends. Really, when it comes to cancer care, and I mean the self-care and caregiver care, you have to get those kinds of connections. It’s like a crutch, a stick won’t hold that thing up. You have to be able to have braces and through that brace and those different mutual communications you’re going to be able to have different friendships, different sources of knowledge, and you’re going to find someone who has a little bit more in common with you and you’re going to hear different points of view.
As a patient, I love talking to someone else who has a KRAS cancer. It’s also fantastic for me to hear a caregiver’s point of view, it softens my heart a bit when it comes to my caregiver partners. It also puts a little perspective on someone else being a cancer patient’s mother, for example, compared to a cancer patient’s spouse. And when I see that, maybe I can be a little more appreciative. And I mean, in a good way, I don’t mean in a selfish way. Maybe it’s just a matter of how can my friends help and what does that look like? And more importantly, what are the resources available? Those resources are what it comes down to. I didn’t know about integrative oncology, I didn’t know about acupuncture, I didn’t know about therapy groups and drum circles and all that other stuff – until I started hearing from other people, and those other people came from different sources.
Moretti: Why is it important for lung cancer patients to network as much as possible?
Conneran: Expanding your horizons is such an important factor. This way we see the beauty of a sunset, I don’t just look at a pinprick, I see the whole picture. And seeing that whole picture might make me dig deeper into another area I didn’t know, so how can I comment on that? And sometimes it hears the same thing we heard in another set of words, but in a different way. It’s important to connect for me, I use Facebook, I use other forums I’ve connected with all lung cancer organizations, local and international. As a patient I wanted to get in touch with other people who had the same biomarker as the KRAS. But KRAS falls into several subgroups. So I want to get in touch with those people too. What does that look like? And finding out what’s going on in my own body helps me connect better because my treatment is going to work better for me as a patient who has a specific type of biomarker, but I have other things that are in common, and I have something have in common with other people who also have other cancers. But I also want to be able to have that feeling of friendship and camaraderie. Because if we can celebrate someone else’s good news, if we are saddened by someone else’s sad news, it can help to fuse together that tapestry or that strength and that strength, that support that is our hope.
Moretti: Does KRAS Kickers provide resources for patients looking to expand their network?
Conneran: That’s what it’s all about. One of these opportunities is exactly what we’re doing here with CURE®, because we want to be the hub where KRAS is concerned. We also use KRAS as an acronym, knowledge, research, including the resources, the advocacy, but those are alliances, because we all work together for survival. And we do that as a hub with KRAS, and we help with the lung cancer organizations, all of them. We want to work with them. We are not all things, we cannot be all things. There are some excellent buddy programs out there. There are excellent Facebook groups out there. There are excellent resources, we don’t need to recreate the wheel, they do, we want to be able to point you in that direction. And at the same time it works for the other types of cancer. These are all part of it. Because even if we start looking at personalized medicine, and I’m the person in personalized medicine, the person in personalized medicine needs more than one tool. You need food, you need water, you need sleep, you need medicine, you need all these things. And so we want to be able to connect you those things and we want to be able to provide those and so if you’re with another organization and we haven’t represented it — connect us we’re all about sharing because the hub is the whole wheel won’t run unless we connect everything together.
This transcript has been edited for clarity.