Fresh Air: A Place for Lung Cancer Support
There are so many lung cancer groups available to join in Facebook it can be overwhelming. When you are first diagnosed, it's like being dropped off in another country, and no one speaks your language. It's exhausting. You'll not only be scared out of your mind but won't know what to ask.
Where do you begin?
We all need help spelling things out
You have so much to worry about and need help spelling things out. But you're worried about your family and life. The doctors should be able to direct you, but especially in small-town hospitals, they don't have the resources to do so.
Starting a lung cancer group
I created a lung cancer group for patients only. No caregivers, doctors (unless they have lung cancer). It's a safe place where we can talk, especially starting out. We can share our real fears and wishes without offending anyone. I'm going to be getting together with some lung cancer patients and create a questionnaire that patients can ask their doctors. Because when you are newly diagnosed, you don't even know what a mutation is.
Since 25% of our hospitals lack the knowledge to do foundation one testing for mutations, we need to make our voices heard. Believe me, you will become your own advocate and basically know so much about the disease you'll think you're a doctor.
This is a group for support and learning
When I talk to everyday friends about it, I have to stop myself and remember to put it in terms they understand. They don't know about oncogenes and mutation testing and the different types of lung cancer. And neither do the newly diagnosed.
So, this group is open to any patients. Especially the new ones. Each lung cancer is different. So, if your mutation changes, you will have plenty of people to ask.
Lung cancer treatments have evolved
Lung cancer has come a long way, even since I was first diagnosed. Next week will be 8 years of living with lung cancer. The doctors originally gave me 12-18 months. Never look at the stats on Google. They are old and unreliable.
Lung cancer treatments are coming out all of the time. I'm blessed to still be on my first-line treatment. I have no sign of active cancer and the mass remaining continues to shrink.
A judgement free space to share
This group does not judge and most have been through the wringer. Members share experiences with different treatments and give advice on helping with side effects. If you want to advocate for lung cancer, you can. We can help get you started and point you in the right direction. This group has become a family for me. Sometimes we disagree, but you can actually feel the love and support surrounding you each time you post. There will always be a reply.
Remember...we're all doing the best we can
When diagnosed, I wanted to save myself so badly that I didn't think much about others. That changed. I feel like my purpose here on earth is to help others. Sometimes things I type or say come across the wrong way, maybe that's the reason I went into public policy in college. I wanted to go on to law school but had my daughter instead. What a choice to make? The choice I made back then paved the way to the place I am now.
That choice made me the person I am now. I used to be awfully mean to others. I never stopped to put myself in their shoes. Now I do stop. Lung cancer made me realize that we don't have control over our lives. We do the best we can. No one judges within our group. Everyone is great at assisting and encouraging each patient. Once you're in, you will end up doing the same thing.
Interested in learning more?
If you would like to join our group for emotional support and to talk to others, we are on Facebook. The name of the group is Lung Cancer Awareness - Fresh Air or just search for "Lung Cancer Fresh Air". Please join us as a face of lung cancer so we can continue to make a difference.
Have you had biomarker testing done?