Jump to content

I've been thinking


KatieB

Recommended Posts

I've been thinking,

why not put our skills to good use? I have been thinking that once I have some free time, to put together a booklet about this site, the "motto" and support and issues of L/C survivors and family members, Maybe some examples of our postings and then distribute to my local cancer center and oncology offices.

I think it would open the eyes of some of these doctors we've been dealing with and give others with L/C some encouraging hope by directing them to this site...? What do you guys think?

I'm in the Dallas /Ft worth area and there is not a L/C support group here. Just breast cancer and all other cancers grouped all together.

Just a thought

Link to comment
Share on other sites

How about getting a support group started? Ask Connie how she got ours started. We had a great speaker at our group recently. He spoke on grief and hope and how they always go together. You grieve over the loss of health, loss of plans , loss of comfort, etc but you also have to begin making new plans, making new dreams , even if it is just plans for tomorrow. Maybe you could learn to give Connies special hugs. We all get them when we come to group. I also think the book is a great idea. I have told David in Canada since he is a teacher and likes books he should write a book of his story at least. You can go to any book store and get a book by a breast cancer surivor , how many do you think you could find on lung cancer? Any one else have a great idea?

Link to comment
Share on other sites

Guest Estrea

Katie;

Anything you can do is great...I can't do much of anything these days but I know Dave Grant can. You should contact him directly and get stuff going. That is what we need...people who are affected by this horrible disease mad as hell and willing to put their energy to good use.

I have lots of ideas, not lots of time!

Estrea

Link to comment
Share on other sites

I agree Katie i think that is a wonderful idea!! I know mass general has a resource room for all cancer patients and families to use to look up info they want and resources along with support groups. I should suggest them having this web site available to people who do use that room.

Link to comment
Share on other sites

Good Idea! I think it is important for patients to know that there is some support and hope available for people affected by L/C, and ALSo for doctors to know that they need to work on the way they approach each individual case, not to write off someone with L/C because some outdated statistic says to.

My dad's doctor repeats the same saying with each office visit. "there's no cure"...Duh...I heard you the first time, RUDE. But what I also want doctors to empasize it that there is HOPE, there are those who live LONG quality lives, and that down the road there may BE a cure. People go into remission and their bodies heal. We need to hear that too.

Dad starts chemo #2 tomorrow. Time is stretched thin for me too right now, but am hoping to work/finish a brochure / pamphlet very soon. LET's get the word out!

Link to comment
Share on other sites

Great Idea Katie!! Count me In! I know the Hospital I hold my Support Group at has a Resource Center as well. I think most Hospitals have a Resource Center. As far as getting Doctor's to read them, well................

Not to sure on that ONE!!! NO I'm NOT KNOCKING DOC'S, because I have several that I call my freinds and they are wonderful doctor's and wonderful friends. HOWEVER, for 4 years I have been trying to get the Doc's at a few hospitals here to promote our Support Group, or just mention it to Lung Cancer Patients, and NO WAY do they remember to do that!!! I have beat my head up against a brick wall on that one and have come up empty handed. But, I sure would take a book of such and share it with my support group members in a heart beat. And they will share it with there friends, and so on and so on........

Well, count me in.

Warm and Gentle Hugs,

Link to comment
Share on other sites

Yeah i will help in anyway i can, I think a nice brochure to send out would be GREAT!! We can all maybe take hospitals and medical facilities in our states and send out some info. I have a few nurse friends in the area too along with a friend who works for partners.org along with the patient advocate i know whom can pass along this board to her clients! Honest to god this board makes this unfortunate journey we all have to take a LOT easier!!! If we can help others realize there are people out there they can talk to WITHOUT having to leave their home, which lets face it patient or family member sometimes that is a HUGE deal in why they may not be able to go to a support group or chose not to. Let me know what i can do!

Link to comment
Share on other sites

Katie,

I agree a brochure would be great! I'm sure there are less expensive ways of doing brochures i see them all the time with holistic meds etc.. next to the fancy brochures..they seem to be printed out on colored paper and they serve the same purpose. I'm ready to fly to Texas to help out! :lol: Maybe we could do the book with the stories and all maybe we could sell for money to benefit the patients or research or something! I know someone who can make a spiral bound book he works for a printing company ( not a hardcover).

Laurie

Link to comment
Share on other sites

Hey Laurie,

Just wanted to share with you that last year I sent out Flyers for our Lung Cancer Awareness Event to all the Cancer Clinic and Major Hospitals in the Minnesota area and it was very costly! Not that I minded doing it, but it does add up. I was shocked at how many Facilities there are in Minnesota. My daughter works for the State and I got a List ($54.00 in cost) just for this list. In total it cost me about $145.00 dollars, of course that's not the cost of the Flyers as well. So I just thought it was worth the heads up regarding cost. There is also the cost of envolopes. The flyers I had a dear friend copy for me at her work. Bless her heart!!! SO that saved alot by doing that. Not to mention we also hand delivered many as well.

It really helped to have people we knew in Clinic's and Hospitals. Contact people are very important in spreading the news! Social workers always know other Social workers at different facilities. I have NEVER had any good luck with getting Nurses and Doctor's to help out. Maybe a few, but that's about all. :(

Sorry if I sound doom and gloom, but this is reality. I get very discouraged with some of the Medical Personnel, so I don't want anyone else to find this out the hard way. I'm a pretty pushy person, and I don't give up easy. :)

Well, that's all I have for 2 cents worth.

Warm and Gentle Hugs,

Link to comment
Share on other sites

Connie,

Maybe we should email like Karma said to all the Social Workers, they usually have the resources. My friend showed me how to make the book this morning it looks pretty easy but we need more stories etc.. more recipes.. more..more..more!!!!!!! The way I see it if we help 50 people or 5 people it is worth it! :lol:

Laurie

Link to comment
Share on other sites

These are all great ideas.

I, unfortunatley have neither time nor talent currently (never have the talent, it is just time is precious right now) to really be of help.

But, we go to Fox Chase Cancer Center which is a LARGE cancer only center in this area and I will make sure they get any information we produce.

I should tell our radiation tech about this board and he can pass it on to other patients. I'll try him tomorrow and let you know.

Link to comment
Share on other sites

Good start guys. It looks like I've struck the match (no pun intended) and will need to fan the flames to get this "fire" started! I have two interviews tomorrow and then hopefully get started on this and let you guys know where I'm at with this soon. Will definitely ask for help if needed. I'm thinking that if I can produce it, you guys can help distribute it in one way or another.

Link to comment
Share on other sites

Guest DaveG

Katie:

You are one cool person. Thank you for taking this on. We need to get the word out. This is how it happens, start on a small scale and build up. before you know it we will have a national organization going, and even international.

Link to comment
Share on other sites

Hi Katie

How right you are....I have been looking for support since I was diagnosed 11/00...I am in Chicago burbs and there is not one lung cancer support group that I know of...WHat a shame...Is there one Doctor out there that cares????

I have heard from Leslie W. Priest who I found on CancerCare site...She has sent me "Its time to focus on lung cancer" material. I will use this material for our "Relay For LIfe Walk" in May.

If you need my help please let me know...I am fighting mad!!!!!!...We need to do something for Lung Cancer Survivors.

Prayers,

Fran

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.