JaneC
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Posts posted by JaneC
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I've been following the post "who wants to be on Oprah" after I had posted on 8/10/04 in the Activism Forum that I had submitted a show idea to the Oprah show (see post for exact content of the post and submission). I know others have submitted to her show in the past as well. When I submitted I was somewhat hesitant about speaking for the group but I just felt so strongly that the message needed to get out.
I agree no one group (young, old, male, female, smoker, non-smoker) is more important than another but the message needs to be tailored to the audience.
Because this is such an important issue, I think we can and should act individually but as a group I think we will be more effective if we coordinate efforts. Ginny mentioned having the board approve these efforts (press releases, etc.) if people are speaking/submitting on behalf of LCSC. I think that sounds reasonable or have the board appoint a group to direct these efforts. I think our group brings a unique perspective to the issue in addition to ALCASE and WALC.
OUR VOICES NEED TO BE HEARD!
Jane
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Zoe,
Sending you many prayers.
Jane
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Teresa,
Way to go!! You are making a difference!!
Jane
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In addition to informing politicians, I also think it's important to reach the media. I hope I haven't over-stepped my bounds but I emailed Oprah (cause when you talk about clout - you gotta talk Oprah
) with a show idea. This isn't to say I personally want to be on Oprah but I'm hoping one or some of us would if she selected the topic for a show. In my proposal, I focused on the toll in women because I thought that would be what she and her audience would most be interested in.Here's a copy of my message:
My idea is regarding the dramatic toll lung cancer takes in women. Lung cancer kills more women each year than breast, ovarian, and colon cancer combined. Currently approximately $11,000 per breast cancer death is spent on breast cancer research while only $1,000 per lung cancer death is spent on lung cancer research. Lung cancer awareness and research lag behind many other cancers because of the stigma related to the belief that people with lung cancer have brought it upon themselves. I have inoperable lung cancer (non-smoker) and belong to an online support group (Lung Cancer Survivors for Change - www.lchelp.com) where many of the members are in their 30's and 40's - many of whom are non-smokers also. Until I was diagnosed, lung cancer wasn't even on the radar for me as a health concern. I believe, along with the other members of Lung Cancer Survivors for Change, that more media attention should be given to the awareness of lung cancer and the need for additional funding of lung cancer research.
I'm thinking about sending out info to other media, too - if you all think this is a good idea. Any ideas for other media? Or should I just cool my jets?
Jane
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Sending prayers to you and your family.
Jane
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Cat,
Wishing you good luck today and hope you're feeling better.
Count me in for writing my legislators for Missouri and I'd be willing send $ to the LCSC as well.
Jane
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Ry,
Just wanted to add my thanks to everyone else's for letting us know how he's doing. I have been so concerned about David.
Praying hard,
Jane
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MRSA = methicillin resistant staph aureus (sp?)
It's a strain of staph infection that doesn't respond to the normal antibiotics that are usually used to treat staph infections.
Hope this helps-
Jane
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I take IP-6 + inositol twice a day. I believe it's supposed to be taken on an empty stomach. I keep the bottle at my bedside and I take 3 capsules first thing in the morning and last thing at night which are the best times for me to have an empty stomach and it's easy to remember that way. I also take ESSIAC tea 3 times a day on an empty stomach and I'm not sure about taking tea and the IP-6 at the same time.
Hope this helps,
Jane
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Bill,
It's a little hard to determine. I had been short of breath (SOB) with exertion before diagnosis but then I had surgery to get a biopsy and do pleuradesis (sp?) to keep my lung inflated and that meant having a chest tube for a week in the hospital. After that, I was even more SOB. Gradually over time my SOB got better although during the point in each chemo cycle when I felt the worst with side effects, I would have increased SOB and then it would get better untill the next chemo treatment. I really, really tried to keep doing some physical activity (except on the worst chemo days) and I think that helped too.
Hope this makes some sense,
Jane
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This guy sounds like an INCREDIBLE, EGOMANIAC, VINDICTIVE JERK!!! How can he treat someone with LC that way??!! Can you get another opinion or someone else to fill out the forms?
Pleas know there are people here that care about you.
Jane
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Terry,
Please let family/friends/church members help - accept their help if it's offered and ask them if they haven't offered. Most people really do want to help and it makes them feel good to be able to do something. I had a good friend who coordinated volunteers and meals for me and my family when I was so sick from chemo. You can't do all this on your own. One thing that needs to be a priority is finding a new onc - one that is more concerned about your husband than with dollars (it was hard to find a way to express how I feel about his concern about the cost of things and keep this message G-rated
). Also my guess is that your husband will get stronger when he gets home and is over the infection. Praying for you.
Jane
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Sending prayers your way.
Jane
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Thanks John. It's particularly interesting to me because I was diagnosed with LC exactly 2 years after being put on hormone replacement therapy after a total hysterectomy. I've always kinda wondered if these two things were related.
Jane
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Bill,
I have the night sweats, too. Their severity kinda comes and goes and doesn't seem to really be related to the meds so much. I've heard that night sweats can be related to LC but I'm not sure why. My docs weren't sure if mine were partially due to stopping my hormone replacement therapy right before I was diagnosed with LC, so they recommended I take 400-800 IU of Vit E in the evenings. This may have helped some.
I know it can be very annoying.
Jane
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David,
Sending prayers your way.
Jane
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I had no idea that lung cancer was #3! - I would have thought it would have been much lower on the list. This really makes me want to be more of an activist!
Jane
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Congrats on the good news!
It's no wonder you're feeling depressed - you've had to cope with waaay too much. You need some "Shelly Time" to really take care of yourself and recharge your spirit. Also you may need a dose adjustment of your meds (spoken by someone who's had to have their meds adjusted a time or two
).Jane
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Cat,
Take care of yourself and know that people here will be praying for you.
I feel a connection with you because I'm also trying/struggling with the macrobiotic diet thing.
Jane
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Terry,
I'm so glad you posted your question. I agree with the group: get a second opinion from a different cancer center or oncology group ASAP.
Praying for you and your husband.
Jane
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I have to wonder - what kind of creep would hack into a LC website's Wall of Memory??!!
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Happy, Happy Birthday!!!!
) with a show idea. This isn't to say I personally want to be on Oprah but I'm hoping one or some of us would if she selected the topic for a show. In my proposal, I focused on the toll in women because I thought that would be what she and her audience would most be interested in.
). Also my guess is that your husband will get stronger when he gets home and is over the infection. 
).
An Activism Letter to Oprah - WARNING - May Upset Some
in GENERAL
Posted
Cat,
VERY well said!
Jane