Pinktober Revolution
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Wow - what a marvelous idea.
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Linda, I remember the previous life, otd@6:30 and happy to be home between9-10pm for a 12 1/2 hour shift that should have been home by 8.
Start with google "Rachel Ray". Should lead you to next prompts with info.
BCO mods might be a source, they likely have an advertising/ communications/media specialist.
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I wonder what stage her cancer was in when it was discovered. It sounds like she had very aggressive BC. Very sad. I also got the impression that she was looking for funding for a clinical human trial.
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Ad in the Seattle Times this morning: Clinical trial for a vaccine to prevent recurrence. They want lymph node positive with HER2 negative tumors. Stage II-IIIa cancers, currently under treatment or completed chemo or rads within the last 30 days. This site is in Tacoma WA. Contact is Christine Goetz (253) 403-7193 or christine.goetz@multicare.org. It also says there are other trial sites. Visit www.neuvax.com or www.clinicaltrials.gov for trial sites. Maybe GrannyDukes will get her wish.
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This is exciting, as the vaccines mostly studied and published to date are for Her2+ tumors! Those of us with Her2- tumors have been watching hopefully.
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Why didn't she try the vaccine? She had nothing to lose except her life, which she lost anyway. But, I also thought the vaccine is to not GET cancer in the first place!!! I've heard this doctor has been proven wrong, so I'm not going to say any more.
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OK Pinktober Revolution Girls I need your help. Since this is my first year of DX....first for many things FOCKTOBER wise. Not that I have liked the whole pink thing for years!!!! So on FB including DH, my AUNT, & my COUSINS her Daughters are all wanting to PINKWASH FB for a WEEK....I know they have my BEST at heart with it all! So how do "I" accept this with grace so as not to tramp on toes BUT still get the word out. I am a non confrontational type of person. But will put the word out none the same! Not sure what the Highest points should be in all of this. Because I know what I say has to make an impact to a General Audience without turning them off! It also needs to be concise in a few sentences! I need some diplomacy please!
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Julz, just say "Boy am I sick of pink THIS year!!! Had enough for now!!" or something to that extent BEFORE they pinkwash it.
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why don't we start our own preemptive FB campaign? It could go something like:
Dear FB Friends,
With Pinktober looming, many breast cancer patients and survivors like myself would like to you to know that we are very much against the commercialization of our disease. We understand that you have the best of intentions when supporting causes that claim to help breast cancer awareness, research and patients. However, we urge you to please be very selective when supporting such causes, and when buying items and products that seasonally "turn pink" during October. The truth is that very little of the money raised goes directly to breast cancer research or to patients in need. Awareness is no longer an issue. Most goes to large non-profits with even larger overhead/admin costs leaving little for the programs you actually wish to support. Instead, please make a direct donation to the organization of your choice that funds research and direct patient care, such as the Dr. Susan Love's Army of Women, and the Pink Daisy Project.
From the National Cancer Institute:
Finding cancer early does not always reduce a woman's chance of dying from breast cancer. Even though mammograms can detect malignant tumors that cannot be felt, treating a small tumor does not always mean that the woman will not die from the cancer. A fast-growing or aggressive cancer may have already spread to other parts of the body before it is detected. Women with such tumors live a longer period of time knowing that they likely have a fatal disease. http://www.cancer.gov/cancertopics/factsheet/detection/mammograms
I know this is a lot for a FB post, but those interested will click the MORE button and keep reading. Input??
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Julz I have read the copyright , patent, and trademark laws----BORING. PINKTOBER REVOLUTION was an original thought of mine. If I were to pursue it, it comes under Trademark Law--There is a section re: confusing names which translates to similar names. Depending on how Pink was trademarked, and if they wanted to chase everyone that uses PINK somehow, it could be a problem. Do your PINKWASH anyway. I figure I'm in a position to be sued already. Would like to see them try. That would only create more of a backlash against whomever has Trademarked Pink. The search for determining who and what is trademarked is 325$ and another 325 for something else required. -nonrefundable.(see copyright below) PiNKOCTOBER REVOULUTION is way beyond BCO right now. Then to actually trademark, there are many more fees. Once something is trademarked , then you have to be willing to protect it. That means lawyers. My DS's a lawyer, but not interested. My pockets aren't deep enough.
BTW I have seen multiple variations on BCO threads referring to this thread and PINKTOBER REVOLUTION; but they are using it a tad differently. It's just a memory recording thing. So, it's evolving.
Copyright is the cheapest by far, but has to be "a body of work" i.e written work>>name and article,>>name and book. Other intellectual property is covered also, but is irrelevant to the topic. Very cheap if I read the fees right---105$ and 35$ for each additional variation on the word/phrase of title attached to the document. AND the search is free with the ability to do online
Patent doesn't apply at all, only mention it b/c the fees are >14,000$ and up
So, I learned something that now falls under Trivial Pursuit.
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Go Shells, first read, very nicely done. could go viral. PM Voraciousreader, MINI, Graciie, SpecialK. Ask their opinions. Suggest scrolling back to see whom has offered publication links and PM too. When you do the first PM ,Cut the message, then when you pm the rest, you can paste it. goes pretty fast.
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Yes I know but somehow I would love to make it a teaching moment....let them pinkwash but with the added bonus of them knowing WHAT the money is going for! Where can I go to get the statistics on just what their Pink dollars are getting! See a teaching moment! I'm just feeling so yuck from getting sick back to back the past 2 weeks that my thinking cap is mush!
This is what I had written before I got a call from my sister! So I pop back in & low & behold YOU ALL come to the rescue! What we write on here has anonymity but what I write on FB doesn't as it is seen from every walk of MY life....that I have chosen to see. I DON"T rock my boat usually....but then that is me. But with this I do feel strongly but like to walk softly & with a big stick!
Shells may I use your description as that is the best way to describe with a soft heart of major impact! ???? It fits who I am! I of course will not use any names what so ever!
SAS....on FB it wasn't started by my Aunt & Cousin....but is just another one of those things that seems to be gererated by FB involving borrowing from one to the next to the next "SHARE" thing! I have not shared it but plan to post a statement....Like SHELLS wrote....she put together what I was feeling that was jumbled up inside me! She voiced it nicely so!
Thank You ALL!!! Having a tuff day today! I liken it to walking off the Cliff of nowhere land now that I am done with RADS as of yesterday! For now RADS is the only ACE in my HOLE I had & now I am done! A friend of mine wrote....I went to this place of OZ where the roads were paved in pink! Now that my treatment is over & I am back from the special place. There is no place like Home.....no place like Home! But Only WE know what OZ was like!
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Julz, How about something like I appreciate everyone's concern for me, especially during BC awareness month. It would make me happy to skip the pink (which is sort of different once you have BC) and contribute to organizations doing research to find the cause. Then list some organizations where all the money goes to research.
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Wren44-
Very well said.
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Wren another good one!
I will have to take a few days to finally come to a complete decision on this! So I do it as best I can....well thought out! Like most of us at one time or another we have all made a snap decision that wasn't the best! Including me!
I'm a pleaser & this year has been AWFUL! But I have had many blessings through all the "RAIN" this year. It's a long story & it doesn't have to ALL do with the BC! Let's just say we have a medical olympics going on as to which disease in our Family is gonna top the other! I just want it to end!
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julz - here is a link that shows a pie chart for 2010 for Komen - the article was written in 2011.
http://komenwatch.org/2011/04/15/komen-contradictions-cure-vs-research/
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I've been considering posting a list of things (David Letterman style) I don't want to hear or people should NOT to say to a person with cancer, but then since many of my friends have said them (and I have said in the past, unfortunately) I really don't want to hurt their feelings; more like educate them. Things like, "well you look good." Depending on the day I want to say a) I have breast cancer not face cancer, what did you expect? or b) Well thank you, that is after all what's important isn't it? So far, I've just done c) smiled and said thank you. Or "No I don't need to hear about your friend, relative, co-worker, etc., that had cancer and died totally unexpectedly, but thanks anyway." Or "Another pink riboon cup, pin, t-shirt, etc., gee thanks." Yes, I have BC, but I don't want to be a walking billboard for the ACS, and I certainly don't want the impression of me to be that of a BC patient/survivor. It is part of my life, but it is not who I am. And the list goes on. I'm sure you all have your lists as well. :-)
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I loved Shells43 sample Facebook post!
I will likely post a similar (but shorter) message reminding people that of the millions of dollars raised by slick fundraisers - little or none goes to actual TREATMENT. If people want to help someone with breast cancer ... do bake sales, house parties, or other grass-roots fundraisers for women in their own communities. Women with breast cancer struggle every day to meet costs of insurance co-pays or pay for treatments not covered by insurance, etc.. Help someone SURVIVE breast cancer if you REALLY want to help.
Plus i will be posting lots of links to Pink Ribbons Inc
http://www.youtube.com/watch?v=3QPZfcYTUaA0 -
Shells, may I use your words on FB? I will probably shorten it just a bit, but I am completely in agreement with your statement! Thanks!
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I remember one of my "rules" I told family when I was diagnosed was "I don't do pink." Another was "I am NOT a survivor." (I HATE that term!)
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I tell people I am a cancer exister. If I die in my sleep at a ripe old age or go the next 30 years like my has after his cancer, than feel free to call me a survivor. Until then, save it.
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OK, I have sent emails to both Ellen Degeneres and Rachel Ray suggesting a program in October related to breast cancer. Here is the one I sent to Ellen:
I had an idea about a program on breast cancer that you might do during October. Many of us who have breast cancer are very unhappy about the commercialization of it with all the pink ribbons and fundraising by/for corporations that pay for trinkets (all colored pink) that seem to trivialize the true experience of a breast cancer patient and their families.
Our lives are completely disrupted by breast cancer, include so much information and contradictory information that it is difficult to sort out. A program could include current approaches to diagnosis & treatments, side effects of treatment, nutrition, reconstruction/non-reconstruction, post-mastectomy fashion for those with and without prostheses, healthy activities, complementary medicine, new ideas, etc.
Your show would be a GREAT opportunity to educate the public in October about breast cancer, how to talk to a cancer survivor without
offending or demeaning or belittling, how to find out the risks and benefits of the treatments suggested, how to talk to your doctor, who your cancer team could/should include (allopathic, naturopathic, Eastern, Western medicine approaches, complimentary therapy, support groups, etc.I am not speaking for all breast cancer survivors, but I have talked with so many women who need to be heard. There is so much we CAN do
to help, so many things that are harmful, and your show reaches so many thoughtful and caring people. Thank you for your consideration.Here is the one I sent to Rachel Ray:
I had an idea about a program on breast cancer that you might do during October. Many of us who have breast cancer are very unhappy about the commercialization of it with all the pink ribbons and fundraising by/for corporations that pay for trinkets (all colored pink) that seem to trivialize the true experience of a breast cancer patient and their families.
Our lives are completely disrupted by breast cancer, include so much information and contradictory information that it is difficult to sort
out. A program could include current approaches to diagnosis & treatments, side effects of treatment, nutrition, reconstruction/non-reconstruction, post-mastectomy fashion for those with and without prostheses, healthy activities, complementary medicine, new ideas, etc.Your show would be a GREAT opportunity to educate the public in October about breast cancer, how to talk to a cancer survivor without
offending or demeaning or belittling, how to find out the risks and benefits of the treatments suggested, how to talk to your doctor, who your cancer team could/should include (nutritionists, allopathic, naturopathic, Eastern, Western medicine approaches, complimentary therapy, psychotherapists, physical therapists, support groups, etc.).Your show typically has several segments, and you could have
- the current state of diagnosis and treatment, what the future may be, what the risks and benefits of treatment REALLY are, despite the headlines in newspapers. Lymphedema is a side effect that is not well understood, but can be devastating for some women, and more than what are reported in the statistics. Other much-ignored issues are chronic pain and fatigue, neuropathy, bone and joint pain, etc. that are due to chemotherapy, radiation, hormonal, and targeted treatments that last for years for some women. Quality of life vs. quantity of life is often ignored in the initial discussions of treatment plans.
- nutrition, with a great cooking demonstration - there are some great cancer-fighting diets and cookbook authors out there! (Rebecca
Katz comes to mind). When offering to provide meals to a cancer patient during treatment, ASK what that person likes or what appeals to them. Thinking that your own "signature dish" is great is fine, but not if the patient has such altered taste or nausea and cannot appreciate it. Sometimes just macaroni and cheese or very spicy flavorful soup are more appreciated.
- fashion, with suggestions and models without reconstruction or prostheses (over half of women who have mastectomy DO NOT
choose to have reconstruction, which often includes multiple more surgeries, failures, poor results, despite what the plastic surgeons would have you believe). Flat and fabulous! Why some of us hate pink t-shirts!!
- the breast cancer team and how to find and put together your best team (primary care, medical oncologist, breast surgeon, plastic surgeon, radiation oncologist, physical therapist with lymphedema training, psychotherapist, accupuncturist, nutritionist, chemotherapy nurse, meditation group or prayer group, family, friends, etc.)
- how to talk with and support women with breast cancer, including things that make women feel worse or angry or misunderstood. For example, questions such as "How are you doing" will usually get the response "just fine" because we don't know what else to say. Some of us are tired of being told "you look great!" when we don't feel so great, and we know people say this in love, so we just say "thank you".
- how to contribute to organizations that are doing the research and supporting women with breast cancer, who have low administrative and advertising costs, who don't just "promote pink" (an extremely offensive color to MANY women with breast cancer) with the pink
ribbon symbol, pink mugs, t-shirts, other paraphernalia.
I am not speaking for all breast cancer survivors, but I have talked with so many women who need to be heard. There is so much we CAN do
to help, so many things that are harmful, and your show reaches so many thoughtful and caring people.Thank you for your consideration.
I included contact information and credentials - will let you know if I hear anything back from them. Any other ideas of who I can send this to? I am thinking "Talk of the Nation" on NPR.
0 - the current state of diagnosis and treatment, what the future may be, what the risks and benefits of treatment REALLY are, despite the headlines in newspapers. Lymphedema is a side effect that is not well understood, but can be devastating for some women, and more than what are reported in the statistics. Other much-ignored issues are chronic pain and fatigue, neuropathy, bone and joint pain, etc. that are due to chemotherapy, radiation, hormonal, and targeted treatments that last for years for some women. Quality of life vs. quantity of life is often ignored in the initial discussions of treatment plans.
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Linda - You totally rock!
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So I went ahead and sent the same stuff to NPRs "Talk of the Nation."
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Hey all, glad you approve of my FB post. I haven't posted it yet. I was concerned about if I should give the Army of Women and Pink Daisy project links or not (just to guide people to better organizations, not that those are the only ones I approve of).
Please feel free to repost/share/edit as you see fit. We just want to get the word out. I really like Mini, NatKat and Wren's texts as well. The David Letterman-style list is also a great idea!0 -
Linda - I agree you Rock.
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I love the David Letterman top 10 list of "Stupid things you can say to a cancer patient" or top 10 "Things you can say to support a cancer patient." Depends on which way you want to focus. Maybe both.
Shells, I probably won't post the direct links to any specific organization, mostly because I haven't researched them and am not really wanting to invest that kind of energy right now, but will encourage my FB friends to do so before they send $$ to anyone.
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I hope one of them take you up on this. You may also want to try Katie Couric, as she has a new show that's supposedly the "new" Oprah and has got to be looking for "new" and interesting material. This could be a real find for her.
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GardenG, I went on the Katie Couric site, and was going to submit the ideas, but one of the "terms" was agreeing to sign over copyright of the material to them! So I just sent a very brief note suggesting they do a show on breast cancer, included my contact information if they are interested in my ideas, and told them why I would not give further info right now. I have the idea out to several others, and anyway, it is MY writing, and I OWN the copyright on my own writing! geez....
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Taking on the top 10 theme.......
Top ten reasons I hate (pink wash-pinktober-breast cancer................fill in the blank)
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1. It just got personal.0
