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LC Survivors: What would it take.....


Connie B

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Hello All.

I am wondering what would it take to get more of the Lung Cancer Patient/Survivors to post here on the board? To offer support to our fellow warriors and those that are walking this nightmare of a walk. To answer serious questions that sometimes only a survivor can answer from one survivor to another.

I have heard so often how those living with lung cancer like to compare notes with others that are living with lung cancer, yet I see the numbers of Lung Cancer Survivors (here on LCSC) slowly dropping off. :( And it's not totally because we lose them. :( Lung Cancer Survivors are just not partaking in the support efforts. Some of you may be doing it via PM's and that's wonderful also. It's just that it would be so wonderful to SEE more and more of us Lung Cancer Survivors here on the Board, to offer hope to others.

We have new Lung Cancer Patients/Survivors that NEED OUR HELP! From One Survivor to Another. I hope I can encourage a lot of you to come out and offer that support and kindness to those that are just starting this road, and to those of us that have been here for a while.

After 11 years of being a survivor, I still need to share some health issues with my Lung Cancer Buddies to see if maybe my issues are lung cancer related or not! Or to see if I am just carzy or not! :roll::wink:

My Lung Cancer Friends and Survivors would you please join me in making an effort to help those with lung cancer that really need our help?

Take a minute to welcome a NEW Lung Cancer Survivor. Offer that wonderful person HOPE!!!

Thank you ALL so very very much.

My Love and Thoughts are with all of us.

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Great idea, Connie.

I'm here to help anyone in any way I can. My short case history: diagnosed NSCLC (adeno/squamous) IIIB 8/05, finished radiation 1/06 (maximum lifetime dose), finished chemo (Taxol/Carbo, then Taxotere/Carbo, then Taxotere) in March '06. Surgery not possible. Currently taking Tarceva. SUV level is normal. No mets. Scans/onc. visit every 3 months, pulmonologist every 6 months.

I feel great, walk 30-60 minutes a day, eat well-balanced healthy meals, work full-time, and fully enjoy my family and friends. My hair has grown back, I regained the weight I lost, and I'm having a tougher time with menopause symptoms these days than I am with cancer! Life is terrific and I count my blessings each and every day!

Feel free to PM me if I can help. This community was/is good to me and I'd love the opportunity to pay it forward.

Take care, all.

Trish

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Okay Connie, you caught me! I know I've been away since school started. I am putting the focus on my little 8 year olds.

But I am here as a suvivor, and a multiple survivor at that. Sunday marked 9 years since my mastectomy.

So my count is 13 years first one, 9 years second, 5 years third. Cancer has been a part of my life for 13 years. My little guy was in 1st grade, and is now in his junior year of COLLEGE.

I am actually starting to think about retirement :wink:

gail

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"Connie B"]Hello All.

I am wondering what would it take to get more of the Lung Cancer Patient/Survivors to post here on the board?

Connie, I've always shied away from this Forum due to the "Survivor". While I know everyday we are alive we are survivors, I still see survivor as someone who has fought the battle and won, versus still fighting the battle.

That is why the thread gets mostly post stating that an anniversary has been reached.

I agree with your sentiment that we need a thread for those fighting this battle to be able to communicate.

I would suggest changing the title of the forum to make it more clear it is for those battling cancer not those who have survived it. Even though that is Politically Incorrect, it may get us talking together.

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Well Bill, I don't know what to say about your comment about you not feeling like a Survivor because your going through treatments or still fighting your cancer.

I was taught a long time ago that the day a person is diagnosed with cancer, any kind of cancer, they are then a Cancer Survivor. That included before treatments, during treatments, after treatments. It's all part of the Cancer Journey. Every Chemo I survived I felt I was a survivor, every surgery I survived I felt I was a survivor, every radiation treatment I did, I felt I was a survivor.

I never thought that being a Lung Cancer Survivor only pertained to those that didn't have cancer anymore or if there cancer was in remission. I know for me, I still fear my cancer can return at anytime. Just another added ongoing forever part of this journey we are on.

So, I really don't know how to reply to your comment. Not that I have to, but it just got me to thinking. We've had so many people come here and ask "when are they a Survivor" and I thought we always shared the day of diagnosis with them. Maybe I need to look back at past posts.

I guess we all look at things differently.

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"Connie B"]

I am wondering what would it take to get more of the Lung Cancer Patient/Survivors to post here on the board?

Connie, you may have the answer right there in your initial post....

How about a LC Patient/Survivor forum to clear up any confusion?

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Connie ...you are so right...if I am correct...I think Katie mentioned one time that it was over 1000 that has registered on this board and for that many people to be on the board...you are right ...way too few posting...and I AM one of them.

I do apolizise and will certainly try to do better...

For the newcomer's on the board...I welcome you in a sad but wonderful way...These kind and knowledgeable people here are the best..believe me ...smarter than some doctors...

I consider myself a Lung Cancer Survivor...I like to think that I HAD LC...not HAVE it...I had a lopectomy in Sept 2004 and just past 2 years now...I thank God every day of my life and will continue to do so till the day I die...I was forturnate to be 1A and have been doing quite well except for ouchy aches and pains...and in my case...I want to blame it on "old age".. '-)

I will gladly help anyone that I can with any questions that they may have that I can answer...you can pm me or email me at pistoltart@webtv.net...love and prayers to all....PamS..

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"Connie B"]Well Bill, I don't know what to say about your comment about you not feeling like a Survivor because your going through treatments or still fighting your cancer.

Connie, my comment was made in response to why some may not post in the Survivor Forum.

I understand the semantics and the Political Correctness. Two things I dislike. Nonetheless it may still be confusing to some.

As far as if I feel I have survived, yes I do. I have survived all those Battles also. A war is a lot longer thing and mine is still in question. Hopefully, you will now know what to say about my well intentioned Survivor comment.

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Connie,

I am fairly new to this web site. It does have the best activity of all the ones that I have been involved in. I think once some become cancer free, they don’t want to talk about cancer so they try to forget about it. I don’t think this is a good move, because as you know it may come back. If we keep up to date on all the new treatment we are better prepared for what ever happens. I try to find new people and I find them in different forums. I just happen to stumble on this forum. Maybe we should make a point of directing new people when they post on the Introduce Yourself forum. I can not come up with a new name except something that would include those that are just diagnosed and those that have been here for a while. The name that comes to my mind is Future Survivors and Survivors. I think each person will consider that they are a survivor at different times. Some after a short time and others might wait till they are in remission or stable, but everyone wants to be a survivor. Maybe you should call it To me it is important to keep every one in the most positive frame of mind. I have not seen it here but on another sight there would be some caregiver and I love caregivers. They mean well, but a newly diagnosed cancer patient does not want to hear negative stories. Sometimes they feel they have to point out the negative. If we could eliminate that by posting some guidelines it would be nice. I was on one site that would tell if the posting was a survivor, friend, or relative. I got so I would only read the postings of the survivors, because so many of the friends and relatives were so negative.

I may have a different attitude than some, because I feel that helping others is a ministry. I also think that it was an answer to prayer; I actually prayed for a ministry, I guess I was not specific enough. But that is a personal thing.

If I can be of any help let me know.

Ernie

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I thought I'd post this again here-

Here is the description of this forum- I hope that in reading it, members will feel it encompasses every survivor- those who have won battles and still continue to fight and others who have won the war!

LCSC Forum Index

LC SURVIVORS:

A forum for anyone diagnosed with Lung Cancer, those in treatment and those who are not, to express their thoughts and issues from a patient's perspective.

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Thank you Katie for clearing up this debate regarding the Survivor Forum. I didn't start this thread with intentions of changing the Fourm name.

I did however start this thread in hopes of getting the Lung Cancer Survivors(those diagnosed with lung cancer) to chat or share there journey with one another. (from one lung cancer survivor to another) That was my main thought for starting this post.

Katie mentioned maybe even having a Lung Cancer Survivors Chat (day or night) where those of us that are dx.d with lung cancer can get together and share our hopes and dreams and fears and treatment thoughts and side-effects, etc, etc, etc, So having said this, what do those of you diagnosed with lung cancer think about starting up a Chat night or day for us to get together and compare notes and share our thoughts with one another who are dx.d with lung cancer.

We'll see what kind of response we get here, and if most of you would like to see this happen, them I see know reason not to give it a try.

:wink:

Who's in???

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Connie, I'm pretty new here also. I don't post much because I have nothing much to say. I do like to read though.

Second, I don't read posts every day because I just want to forget about the whole thing and not be reminded I have a problem. I am in here once or twice a week reading.

I only post if I feel my answer will help in some way.

Maybe most people feel this way.

But wait until my doctors visit start again - 3 different dr's in one month . Then I'll start to compain about stuff.

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Hi Connie, I have the scar down my back, I have the radiation burned out heart and I have the chemo veins. It's been one H--l of a road...

6 years out and I still live in fear (especially scan time). I don't feel cured and none of my doctors have said that.

I post a new question or topic when I seek advice, encouragement and suggestions from others who have/had lc or who have experienced lc through family members, friends. This is a group I feel really understands what lc is.

I am grateful for all responses. I wish this site had been around when I was dx'd and didn't have a clue what to expect. :)

Barb

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