Cancer Survivors Network - Comments for "Ladies....I have some bad news about the OC Quilt (and the NOCC)" Comments for "Ladies....I have some bad news about the OC Quilt (and the NOCC)" en-csn Hi Bananaboat,   I'm <p>Hi Bananaboat,</p> <p>&nbsp;</p> <p>I'm fortunate because my oncologists are all brutally honest, and my brain mets were met head on with neurosurgery, wbrt, and gamma knife. &nbsp;Every time I see my radiation oncologist (every 3 months) he runs through the gamut of neurological testing to ensure that I'm good. &nbsp;Then he spends about fifteen minutes just chatting with me about "stuff" in general. &nbsp;This is how he makes sure that I'm processing things. &nbsp;Additionally, all of my friends and my hubby keep a close watch on me to make sure that the slightest sign of a recurrence is addressed immediately. &nbsp;( I had to explain to my husband that I wasn't slurring my words because of a tumor, I was just drunk! lol) &nbsp;</p> <p>&nbsp;</p> <p>Encourage your loved one to share with you, no matter how scared she might be that it's still there or growing. &nbsp;Keep a journal yourself of her symptoms to share with her oncologist. &nbsp;The fact is this, trying to hide symptoms of a recurrence will be more deadly than a reccurrence caught early. &nbsp;Perhaps if you share this with her from someone who has been through brain mets (I constantly ask others how I'm doing, because I no longer trust my own judgement) she'll feel more relaxed. &nbsp;</p> <p>All I can think sometimes, is that if someone had pointed out to me that there were speech issues, I would have been more outspoken to my doctor and would have been treated much earlier.</p> <p>As it is, I am fortunate and blessed to be NED today. &nbsp;</p> <p>&nbsp;</p> <p>Hugs to you and your loved one!</p> <p>&nbsp;</p> <p>Leesa</p> <p>PS: &nbsp;Diagnosed Stage 3c in January 2010 and still going strong!</p> <p>&nbsp;</p> <p>&nbsp;</p> Sat, 30 Mar 2013 03:46:43 +0000 leesag comment 1353252 at Leesag <p>Hi, Leesag,</p> <p>Its good to see you on the board how are you doing?&nbsp; Since my loved one was diagnosed with brain mets from ovarian cancer, you are the only person on this thread that I am keen to follow, as I know you too had brain mets.&nbsp; My loved one had multiple inoperable brain mets a few months ago and she is still quite fragile ie, balance issues together with no appetite.&nbsp; She appears to be unaware of her symptoms&nbsp; and believes she is quite alright, which is difficult for us to understand. She did have WBRT at the time of diagnosis, but her condition is worse now, than what it was before the radiation. Its so distressing to watch and second guess what is going on and she is not one to talk about her symptoms or how she is feeling.</p> Fri, 29 Mar 2013 20:54:11 +0000 bananaboat comment 1353076 at Only three of us?   My God. <p>Only three of us? &nbsp; My God. &nbsp;I've been away a long time, too long ;(. &nbsp;</p> <p>&nbsp;</p> <p>It's been just over 3 years since my diagnosis. &nbsp;I'm still trucking along! &nbsp;Last CA was 14, up a bit from 12, but not statistically significant. &nbsp;</p> <p>&nbsp;</p> <p>As for the NOCC, the only cancer organization I urge people to donate to these days is the AMERICAN CANCER SOCIETY. &nbsp;Any cure for any cancer benefits all of us. &nbsp;</p> <p>&nbsp;</p> <p>Just imagine what would happen if all the foundations, and other organizations pooled their money and spent it on finding a CURE. &nbsp;Imagine what would happen if those making hundreds of thousands of dollars only took the average salary of the family of a &nbsp;Cancer Survivor and donated the rest? &nbsp;(They'd still make out pretty well, I bet). &nbsp;</p> <p>&nbsp;</p> <p>Just Imagine, what&nbsp;<em>could&nbsp;</em>happen if everyone worked together. &nbsp;&nbsp;</p> <p>&nbsp;</p> <p>(I feel like I'm channeling John Lennon! lol)</p> <p>&nbsp;</p> <p>Anyway,&nbsp;</p> <p>&nbsp;</p> <p>Those are my thoughts. &nbsp;</p> <p>&nbsp;</p> <p>Hugs and Hope To All!</p> <p>&nbsp;</p> <p>Leesa</p> <p>&nbsp;</p> Fri, 29 Mar 2013 19:20:49 +0000 leesag comment 1353054 at Thank you, Lisa <p><span style="font-size: medium;"><strong>Thank you, Lisa, for being such a stand-up friend. &nbsp;</strong></span></p> <p><span style="font-size: medium;"><strong>I did indeed put a lot of work into the NOCC quilt, as did many other women. &nbsp;Mary and I made over 20 beautiful squares, mostly for women on this board. &nbsp;Sadly, only three of those ladies (myself, Mary K and Lesa G) are still alive. &nbsp;It was a beautiful quilt, and I am the first to acknowledge that the unfortunate events surrounding the raffle were not intentional acts of dishonesty. &nbsp;It was sloppy administrative work and the person most responsible for the entire debacle (the national Treasurer) was on-site and refused to take any remedial action.</strong></span></p> <p><span style="font-size: medium;" data-mce-mark="1"><strong>In addition, the organization (NOCC) failed to comply with State law in conducting the raffle. &nbsp;TX law has very specific criteria for non-profits conducting raffles, and the NOCC ignored virtually all of them.</strong></span><strong><span style="font-size: medium;" data-mce-mark="1"><br /></span></strong></p> <p><span style="font-size: medium;" data-mce-mark="1"></span><span style="font-size: medium;" data-mce-mark="1"><strong>The Treasure was paid, according to the organization's form 990 for the previous year, an annual salary of $92,000. &nbsp;I think that for 92K, any officer of any non-profit should be held to a relatively high standard, and should, at the very least, not break any laws in the performance of his/her duties. &nbsp;</strong></span></p> <p><span style="font-size: medium;" data-mce-mark="1"><strong>Anyone, of course, is entitled to their opinion on the subject, but that's mine. &nbsp;It has not changed since my original post, but I have not made any attempt to keep the topic "alive." &nbsp;I said my piece and moved on. &nbsp;The person who "just had to comment" on my experience with the NOCC does not appear to have made another post, either before or since. &nbsp;Curious, don't you think?</strong></span></p> <p><span style="font-size: medium;" data-mce-mark="1"><strong>Carlene</strong></span></p> <p><span style="font-size: medium;" data-mce-mark="1"><strong>&nbsp;</strong></span></p> Fri, 22 Mar 2013 20:31:40 +0000 Hissy_Fitz comment 1350015 at Walk away <p>Thanks, Alexandra, for putting my thoughts into words. &nbsp;(We missed you last week!)</p> <p>Best thing for us to do is walk away from this Thread.</p> <p>Our hearts, shoulders and ears are open to anyone who comes to this board to share their cancer experience, but we won't be dooped or scammed or phished.</p> <p>Walk away, sisters.</p> Sun, 17 Mar 2013 19:55:22 +0000 wholfmeister comment 1347546 at This is Your first Post? <p>Well, Im a little defensive since most of the women who commented and wrote this post have passed away and I wonder what your agenda is since there has not been one comment about this for a year and a half. Also, I just found out today that Carlene (hissyfitz) who has done amaing things for OVCA has a recurrence since her second and third chemo haven't worked. I'm devastated about that. I'd like to hear more about your cancer and less about the pros and cons of certain charities. Hizzyfitz put a lot of work into this quilt that ended up in WA. My mother was one of the squares......and they were rude to far as broadening the discussion, there hasn't been any more discussion for a year and a half. Sorry if I'm defensive but,,,,,,,</p> Sun, 17 Mar 2013 04:52:31 +0000 Lisa13Q comment 1347403 at Nocc <p>Stand for for &nbsp;national ovarian cancer center?</p> Sun, 17 Mar 2013 03:23:52 +0000 2timothy1 7 comment 1347390 at Dear Gal <p>Congratulations on being an OC survivor and welcome to the board.</p> <p>Your response to an obscure 2-year-old post where several contributors have passed away and a passionate sermon for nonprofits is very unusually phrased...for a woman.</p> <p>I would love to hear your own cancer journey story and learn more about your fabulous experience with NOCC.</p> <p>Best wishes,&nbsp;</p> Sun, 17 Mar 2013 02:35:40 +0000 Alexandra comment 1347356 at Let's broaden the discussion <p>I realize that this conversation started a long time ago, but when I came across it, I just had to comment.&nbsp; There's never any excuse for rudeness, and that's a law that I live by: You can say anything that you have to say nicely.&nbsp; However, I would caution against publicly blasting and boycotting&nbsp;an entire organization based on a couple of incidents.&nbsp; I am an OC survivor, and I've had nothing but a fabulous experience with NOCC, its staff and events.</p> <p>I have also worked for many nonprofits, and almost without exception, they operate on a very thin operating budget relative to whatever they are trying to accomplish.&nbsp; When you have too much work, too few people and even less funds, mistakes and frayed nerves are possible on occasion...even though, they should strive for 100% satisfaction all the time.&nbsp; (However, I hope the comment about the purse was a misunderstanding, because that is unimaginable.)</p> <p>To the woman who said that her father was president many times without pay... that is wonderful that your father volunteered on so many Boards, but are you suggesting that nonprofits should have no paid staff much less at competitive salaries.&nbsp; Staff salaries are a valid and important part of program overhead.&nbsp; We all have to make a living, and why should only oil, technology and other for-profit executives make good salaries?&nbsp; People who work for nonprofits do it, because they love it.&nbsp; They typically could make much more money elsewhere, and I ask you to imagine if we recruited the TOP talent in the country to take on the issues of poverty, hunger, education and disease instead of paying them the least what could be accomplished.&nbsp; Please watch this video from the TED conference, which eloquently illustrates what this concept could achieve:<br /><a href=""></a></p> <p>I sincerely hope that you'll take the time to watch this video, because it is time for more progressive thinking when it comes to charities so that we discontinue the old, small version of a nonprofit for one that SOLVES problems and CURES diseases.&nbsp; There are a lot of people out there that have school loans from college and graduate programs that would still like to send their own kids to college someday to be the researcher that cures a disease like cancer...I hope that these people aren't forced into other professions.&nbsp; Could you imagine a social entrepeneur that raises $100 billion for research instead of for Exxon or Apple?</p> <p>Imagine the possibilities.</p> Sat, 16 Mar 2013 01:17:58 +0000 GalforGood comment 1347035 at Oh boy!!!! <p>They have no idea what they have gotten themselves into. You do so much for us all and it is very much appreciated. Thank you so much!!!!!!!!</p> Sun, 25 Sep 2011 14:19:35 +0000 jloe comment 1128950 at