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Hello,

My name is Linda Rath, and I'm a healthcare journalist. I'm currently working on a feature story for WebMD about support groups and communities for people with lung cancer. I would love to interview some folks on this site about their experiences with these groups. My deadline is tight--January 4--and I would need to complete the interview before that. Happy to send a few questions via email so you can respond in private.

I look forward to hearing from some of you.

Many thanks,

Linda

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Hello Linda,

I am one of the peer moderators for the site.  Thank you for reaching out to our community.  If you have spent any time reviewing the posts here, you will find this is a vibrant community, generally under the social media radar.   
It would be helpful to learn a little more about your interest in lung cancer and some of the details about the WebMD article. 
 

Decades of public service announcements have misled the medical community and the general community about lung cancer.  As a result the stigma we all face is very real.  Any opportunity to better inform to improve awareness is welcome.  
 

Michelle

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Hello Linda,

Welcome to our site.  Like Michelle I will be happy to participate once we understand a bit more about your project.  I can say, for my part, that this is a wonderful group and helped me beyond any expectations.

Lou Torres

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Hi Lou,

Thanks so very much for responding. I would welcome the chance to talk to you a little further. As I told Michele, this article is NOT about lung cancer.  It is about support groups and communities for people with lung cancer. Here are the questions we are trying to answer:

1. What is the value of support groups or communities for people who have lung cancer or their loved ones?

2. Tips from people who have been there, such as the best ways to find the right community for any one person, how their journey has gone, and how their community has helped them. 

3. Any nontraditional sources of support you can recommend that others might not think of.

I am talking to doctors and patient outreach people from the American Lung Society, but the people who know the subject best are the patients and survivors themselves. 

If you're willing to share a little more of your story, such as how you joined this group and why, whether, you belong to any others, and the ways it has helped you, I would love to hear it. 

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8 hours ago, TJM said:

If I can help in anyway I would be glad to. This site is special 

Peace

Tom

Tom,

Thank you so very much for responding. I had a long and wonderful conversation with Michelle today, and she couldn't speak more highly of you. She also said you would be a great person to talk to. Would you be willing to have a brief conversation on Thursday, 12/31? I am available any time after 9:00 a.m. Pacific. I would also be more than happy to email you a few questions and spare you the interview (!)

Again, thanks so very much for responding. I look forward to being in touch.

All my best,

Linda

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5 minutes ago, LSR said:

Tom,

Thank you so very much for responding. I had a long and wonderful conversation with Michelle today, and she couldn't speak more highly of you. She also said you would be a great person to talk to. Would you be willing to have a brief conversation on Thursday, 12/31? I am available any time after 9:00 a.m. Pacific. I would also be more than happy to email you a few questions and spare you the interview (!)

Again, thanks so very much for responding. I look forward to being in touch.

All my best,

Linda

That will work for me. Please send me the questions, just so I am prepared.

Looking forward to talking with you.

Peace

Tom

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Hi Tom,

Happy to send a few questions (below), but I really like letting the conversation unwind as it will. Please let me know a good time to talk on 12/31 and also the best way to reach you. If you'd prefer to call me, my contact information is below, too. Just let me know what works best for you.

1.  If you don't mind answering a couple of personal questions, when were you diagnosed with lung cancer? How are you doing now?

2.  How did you find the LUNGevity community? What benefits were you hoping to get from it? Medical information from people who have gone through the same thing? Emotional support? Resources? 

3. Please share anything you'd like about your experience with LUNGevity.

4. Michelle said something very interesting: "You start feeling better physically before you start feeling better emotionally. You don't look sick on the outside, so people don't realize what is happening on the inside." Was this true for you? Did being part of the LUNGevity community help with the emotional roller coaster, perhaps in a way friends and family couldn't? (Not trying to put words in your mouth).

5. If someone is newly diagnosed, would you suggest they look for a support group? If so, what would be the best way to go about that? How can someone find a group/community that's right for them?

6. Do you take advantage of the Zoom meetings? Why or why not?

7. Downsides of support groups/communities.

8. Anything else you want lung cancer patients/survivors to know about finding support.

Thanks again so much,

Linda (480-710-1258 OR 480-207-6227)

 

6. Are there sources of support other than online forums you can recommend? (Not everyone has access to the internet

 

 

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22 hours ago, LSR said:

Hi Tom,

Happy to send a few questions (below), but I really like letting the conversation unwind as it will. Please let me know a good time to talk on 12/31 and also the best way to reach you. If you'd prefer to call me, my contact information is below, too. Just let me know what works best for you.

1.  If you don't mind answering a couple of personal questions, when were you diagnosed with lung cancer? How are you doing now?

2.  How did you find the LUNGevity community? What benefits were you hoping to get from it? Medical information from people who have gone through the same thing? Emotional support? Resources? 

3. Please share anything you'd like about your experience with LUNGevity.

4. Michelle said something very interesting: "You start feeling better physically before you start feeling better emotionally. You don't look sick on the outside, so people don't realize what is happening on the inside." Was this true for you? Did being part of the LUNGevity community help with the emotional roller coaster, perhaps in a way friends and family couldn't? (Not trying to put words in your mouth).

5. If someone is newly diagnosed, would you suggest they look for a support group? If so, what would be the best way to go about that? How can someone find a group/community that's right for them?

6. Do you take advantage of the Zoom meetings? Why or why not?

7. Downsides of support groups/communities.

8. Anything else you want lung cancer patients/survivors to know about finding support.

Thanks again so much,

Linda (480-710-1258 OR 480-207-6227)

 

6. Are there sources of support other than online forums you can recommend? (Not everyone has access to the internet

 

 

Feel free to call me. I will DM you my cell number.

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On 12/27/2020 at 8:09 PM, LSR said:

Hi Lou,

Thanks so very much for responding. I would welcome the chance to talk to you a little further. As I told Michele, this article is NOT about lung cancer.  It is about support groups and communities for people with lung cancer. Here are the questions we are trying to answer....

Linda,

I will respond personally to each of your questions. My responses are below in Bold.

1. What is the value of support groups or communities for people who have lung cancer or their loved ones?

When I first discovered I had lung cancer I "catastrophized" everything and figured I was already dead.  The shock of diagnosis doesn't really promote an inquisitive mind.  Rather you are in a panic with your head spinning.  All the testing, meetings, new doctors can be very intimidating and scary.  But a group of people who have gone on the same journey can provide real and strong comfort.  They speak from experiences, not quoting tests or percentages or "expected outcomes" and that support is what got me focused on my surgery and recovery.  The sharing of this group prepared me the way a soldier is prepared for battle, so that I knew all that I would be facing and was ready for it.

2. Tips from people who have been there, such as the best ways to find the right community for any one person, how their journey has gone, and how their community has helped them.

As I said, I had reached a point of panic and began looking for data (a big mistake as Dr Google is dangerous) and went to American Lung Association and a few sites and then lucked out finding Lungevity.  I read posts to understand what they shared and was amazed that they were just like me at one time.  I joined and posted questions and was quickly surrounded by a group that brought my anxiety from 10 down to 4.  Anyone should look to find a group that is closely aligned to your illness, look around at the forums and see what topics are covered.  Next, see how responsive people are.  In my case I had responses to my posts in hours and that was amazing to me.  People shared stories and experiences and really made me feel welcome and cared for.  

3. Any nontraditional sources of support you can recommend that others might not think of.

To me a forum was not a traditional source of support, but it worked so well.  Lungevity also has a Facebook page and (as you've learned) does Zoom meetings and other interactions that really provide a great environment.  Others may share additional outside sources.

If you're willing to share a little more of your story, such as how you joined this group and why, whether, you belong to any others, and the ways it has helped you, I would love to hear it. 

Linda, my introduction and many of the great support responses I got can be found here.  The follow up for me is that this group saw me through my surgery (I even managed to post while in the hospital) and my recovery.  The group here is so varied in their experience and so willing to share that there would always be someone who went through something I was facing and had tips and tricks to get through it and, when necessary, folks would tell me that I needed to speak to my doctor about some situations.  Right now I'm NED (No Evidence of Disease), but with this disease that can change for any of us.  In my case I will stay with this group as I already know that they will stand by me regardless of what I go through.

I hope this information helps others.
Lou

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Hi Lou,

Thanks so very much for taking the time to write with such sensitivity, candor, and thoughtfulness. Lots of great information here I can use for my story.

My very best to you.

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Hi Lou,

First, I want to thank you again for taking the time to write such thoughtful and important responses to my questions. I quoted you quite a bit in my story. Unfortunately, I just learned from my editor that they have changed their policy and no longer publish quotes from someone who doesn't give their full  name. That's ridiculous and a big change in policy that I find offensive. In any case, would you be willing to tell me your last name? I can send you my email address so you don't have to publish it on the forum. If you'd rather not, I understand.

 

Best, 
Linda

 

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On 12/30/2020 at 5:35 PM, LouT said:

Linda,

I will respond personally to each of your questions. My responses are below in Bold.

1. What is the value of support groups or communities for people who have lung cancer or their loved ones?

When I first discovered I had lung cancer I "catastrophized" everything and figured I was already dead.  The shock of diagnosis doesn't really promote an inquisitive mind.  Rather you are in a panic with your head spinning.  All the testing, meetings, new doctors can be very intimidating and scary.  But a group of people who have gone on the same journey can provide real and strong comfort.  They speak from experiences, not quoting tests or percentages or "expected outcomes" and that support is what got me focused on my surgery and recovery.  The sharing of this group prepared me the way a soldier is prepared for battle, so that I knew all that I would be facing and was ready for it.

2. Tips from people who have been there, such as the best ways to find the right community for any one person, how their journey has gone, and how their community has helped them.

As I said, I had reached a point of panic and began looking for data (a big mistake as Dr Google is dangerous) and went to American Lung Association and a few sites and then lucked out finding Lungevity.  I read posts to understand what they shared and was amazed that they were just like me at one time.  I joined and posted questions and was quickly surrounded by a group that brought my anxiety from 10 down to 4.  Anyone should look to find a group that is closely aligned to your illness, look around at the forums and see what topics are covered.  Next, see how responsive people are.  In my case I had responses to my posts in hours and that was amazing to me.  People shared stories and experiences and really made me feel welcome and cared for.  

3. Any nontraditional sources of support you can recommend that others might not think of.

To me a forum was not a traditional source of support, but it worked so well.  Lungevity also has a Facebook page and (as you've learned) does Zoom meetings and other interactions that really provide a great environment.  Others may share additional outside sources.

If you're willing to share a little more of your story, such as how you joined this group and why, whether, you belong to any others, and the ways it has helped you, I would love to hear it. 

Linda, my introduction and many of the great support responses I got can be found here.  The follow up for me is that this group saw me through my surgery (I even managed to post while in the hospital) and my recovery.  The group here is so varied in their experience and so willing to share that there would always be someone who went through something I was facing and had tips and tricks to get through it and, when necessary, folks would tell me that I needed to speak to my doctor about some situations.  Right now I'm NED (No Evidence of Disease), but with this disease that can change for any of us.  In my case I will stay with this group as I already know that they will stand by me regardless of what I go through.

I hope this information helps others.
Lou

You have some great comments Lou. I hope you give permission on your name!

Peace

Tom

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On 1/5/2021 at 1:32 PM, LSR said:

Hi Lou,

First, I want to thank you again for taking the time to write such thoughtful and important responses to my questions. I quoted you quite a bit in my story. Unfortunately, I just learned from my editor that they have changed their policy and no longer publish quotes from someone who doesn't give their full  name. That's ridiculous and a big change in policy that I find offensive. In any case, would you be willing to tell me your last name? I can send you my email address so you don't have to publish it on the forum. If you'd rather not, I understand.

 

Best, 
Linda

 

My name is Lou Torres

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Hi Lou,

Thanks so much for getting back to me. Both my editor and I loved some of your comments and felt it would have been a shame to lose them. I hope all is well with you and wish the very best for you going forward.

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Thanks Linda,

I'm honored that anything I say can help to spread the message about support in general and our forum in particular.  Thanks for including us in the article and I look forward to reading it, once published.

Lou

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Hi Lou,

It's I who should thank you and everyone in the group who was willing to participate. There wouldn't have been an article without you, and i am very grateful for your help.

 

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