lisaRN Posted March 9, 2006 Share Posted March 9, 2006 Hello, I would like to take a poll. My 41yo husband passed away from this dreadful disease on Dec 5, 2004. I haven't posted here since about then.... it has been a tough road for our son and me.... but we ARE still here.. The reason for my poll is that I want to start a foundation in my husband's name and I would like it to serve the best purpose possible. So the question is: If you could dream up any type of foundation or ANYTHING that you think might have helped you SOMEHOW get through this a little easier (SOMETHING THAT DOESNT EXIST OR IS HARD TO FIND), what would it be? Think about what your personal and family needs have been as you have made your way through this fight.... what would make it better? was there info you needed but didnt get? Were there Treatments you were denied because of lack of money. Are you finding enough info from legitimate sources re: lung cancer diagnosis and treatments...... I mean ANYTHING you can think of will be of great help to me..... What do you wish was out there but isnt or isnt easy to find.... Thanks in advance for you input.... My best wishes & regards to all of you....I know first hand how painful this is. Please give me serious answers, I know we all would wish for a cure, but I am looking for some guidance to begin this foundation in my husband's loving memory. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ WITH EVERY DIFFICULTY ~ THERE IS RELIEF ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 9, 2006 Share Posted March 9, 2006 (If you could dream up any type of support group) Well, this is a no brainer. The support group would be LCSC!!! Look at ALL the GREAT THINGS that go on here! Look at all the people that come here and offer support and education. Anything you need to know about lung cancer is right here. Quote Link to comment Share on other sites More sharing options...
blaze100 Posted March 9, 2006 Share Posted March 9, 2006 OK, corny but this is what I really needed. When I was recovering in the hospital, I craved contact with other lc survivors. Just a hand written note of encouragement or maybe an invitation to join an on-line group like ours or a little book of lc survivor stories with pictures. Anything with a message of hope. I got a little gold plated guardian angel when I "graduated" from radiation and I still think the world of that little angel. Barb Quote Link to comment Share on other sites More sharing options...
Patty Posted March 9, 2006 Share Posted March 9, 2006 The above ideas are sure right on target. I just found this site a whole year after my surgery. I "picked up" a little business card for 'People Living w/Cancer' which when I finally went to the site and read about the statistics for LC, was, to say the least, mortified. Then from there I somehow found the LCSC. I sure wished I had been "given" some info right away about it. Thus, been given more hope, understanding, support etc early on. I had other people call who had other cancers, but it is still not as comforting as communicating with others with LC themselves. So I really wish that I had this kind of support a long time ago, and of course a lap top to go with it! I think that a lot of us cannot sit in front of a regular computer for very long if even at all. Calls and flowers would have been nice too and of course A CURE for LC, no matter if you smoked or not. I know, I am asking for too much, but the breast and prostrate cancer people get all kinds of stuff, dont they? They even get a lot more chance of a cure. Why can't we get that? Sorry, I will stop, I am getting whiney, Patty Quote Link to comment Share on other sites More sharing options...
Geri Posted March 9, 2006 Share Posted March 9, 2006 I think Katie's on the money. I realized this weekend that talking face to face with other lung cancer survivors - which, for me, now adds up to three people - have been the few times that I have been totally understood. No explanations were necessary, each of us had different types of lc and tx but we all got it. My friend found Gilda's Club to be a great support and sometimes a distraction from everyday cancer happenings. As much as we support each other here, and it's truly making a difference, sometimes you have to be able to look at the face behind the voice. Just a thought. Geri Quote Link to comment Share on other sites More sharing options...
Nancy B Posted March 9, 2006 Share Posted March 9, 2006 I agree with Katie. The Wellness Community offered me tremendous support, but I was the only one with lung cancer. I would love to see a real live LCSC support group in every community too. How could we do that? The Wellness Community offers a support group for survivors and a separate support group for caregivers, I like that idea. Quote Link to comment Share on other sites More sharing options...
blaze100 Posted March 9, 2006 Share Posted March 9, 2006 Yes, you get the call there is a mass in your lung, you do the bronchoscopy hoping against hope tha it will be OK right up until you find out it's lc. Then it's a rush to treatment/surgery, My only comfort was Xanex. Then waking up in hospital with no other survivors to talk with, just a hopeles feeling all around. Yes there other cancer survivors, but it's not the same as meeting other lc survivors. Every hospital that treats lc should have a lc survivor group contact for its patients. Barb Quote Link to comment Share on other sites More sharing options...
Patty Posted March 9, 2006 Share Posted March 9, 2006 Wow Barb! That is exactly how it happened with me, Xanex and all. Patty Quote Link to comment Share on other sites More sharing options...
karenl Posted March 10, 2006 Share Posted March 10, 2006 Hi Lisa First, I want to say hello, and welcome back . I remember you well, and it's good to see you again, and to know that you and your son are doing OK. For me personally, one of the hardest things throughout Mum's diagnosis and illness, was the pessimistic attitude of the medical professionals. I would like to see doctors be made aware that there are people surviving this disease for much longer than expected, and for them to pass this information on to their patients. Of course lung cancer (advanced disease) has a very poor prognosis, but I believe that there are ways of informing patients of the seriousness of their condition, while at the same time allowing them to hold on to some hope. I would like to see doctors educated in this regard, so that they can direct their patients towards groups like LCSC where they can make contact with other patients who are defying the odds. Good luck with this, Lisa, and I hope you stick around for a while..... Karen Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted March 10, 2006 Share Posted March 10, 2006 I would like to see comprehensive home health care assistance offered to all cancer patients undergoing treatment. More than one member here has had to make a choice between aggressive treatment and getting supportive care needed - only available through hospice. A few years ago, a member of our church had a "drive-through" mastectomy. She had no family nearby, and the whole church pitched in to stay with her overnight (the dr. said she couldn't stay alone, yet was released from the hospital), cook, clean, take her for treamtent...and I know manylc patients are in the same boat. I'ts not impossible. Home and Hospice of RI has a Home Care program, available for anyone suffering from a life-thratening illness, which offers most of the services available to hospice patients. This would have a very far-reaching benefit. So many people are afraid of hospice because it seems like "giving up" (and there are some for-profit hospices we SHOULD be afraid of ). Yet they desperately need some help with personal care, durable medical goods, coordinating medication, pain relief, etc. The other part of this is a hospice organization should be about quality of life, not just a pain-free at-home death. Long-term programs for patients who are not ready to be called "terminal" could only help in changing some attitudes both in hospice care and the community. Supportive care is vital, both in the comfort of the patient and their ability to continue treatment. I firmly believe that treatment-related deaths could be reduced with aggressive nursing care. There are non-profit and for-profit hospices. I think this is an organization which should be non-profit, for obvious reasons. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 10, 2006 Share Posted March 10, 2006 Lisa, like Karen, I remember you very well. All of a sudden you disappeared. Beth (justakid) and I were pretty nervous that the in-laws did something bad to you. Glad they didn't! I would like to see lc person in treatment have no money worries. I am talking the close to destitute. There have been people who come here who have no savings and then they get sick and cannot support themselves. SSDI won't kick in for six months, and that is just a piddly amount compared to a steady normal income. Because of the gov't beurocracy, they don't qualify for funds to help, yet the rest of their lives are falling apart. They need to be eased up so that fear and terror are not running through their viens. They need to concentrate on one thing, getting better. It is the folks in the "middle" I worry about. They are workers who made too much money to qualify for gov't assistance, but don't have a cushion (for whatever reasons) to fall back on. Just paying a phone bill or telephone bill or a weeks worth of groceries. I would like to see some of the basic needs taken care of. Also, it helps when someone....anyone! cares! especially shows that they care. I was one of those people who didn't have the money and it was absolutely terrifying. Never do I want to be there again. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Lauriannessister Posted March 10, 2006 Share Posted March 10, 2006 I am with you, LisaRN. I want to start a non-profit in my sister's name as well. And I keep telling people I want my sister's name to be as known as Susan Komen. After all, her foundation was also started by a sister. Just to give you some ideas of what I envision (and I think the ideas have been posted): -Supportive group that will understand that lung cancer is the issue, and not blame smoking. Educating the public about lung cancer, and not playing the blame game with lung cancer. -Raising money with events for lung cancer research (like the Susan Komen run) and to help those who can not help themselves. -I suggested to my husband some kind of housing, like the Ronald McDonald House, where families can stay with there loved ones at no cost, instead of having to staying in motels or hotels. -A lung cancer store, like the one of this community, to raise money for lung cancer. -Working with other organizations (such as The American Lung Association, American Cancer Society, Lung Cancer Alliance, etc), instead of against them. In the end, our goal is the same. To stop cancer. -An informative website where people can go to for information on lung cancer, additional resources and links. -I also have looked at Susan Komen's site and just take out breast and put in lung. Right now, my sister's death is still fresh, but this is the type of thing that really keeps me going right now. Every time I do something for lung cancer awareness, that is how I get my "high". That is why my dad and I started a blog for Laurianne as well. I realize that my ideas are not really small ideas, but in the end, my hope is to accomplish these things. I hope they help you also. Quote Link to comment Share on other sites More sharing options...
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