Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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To all of you, a couple of pieces of news to share.
First of all Marilyn Sapsford, our Ontario Regional Director and OVdialogue program owner has decided to retire and next Thursday will be her last day. I am so happy for her, although sad she'll be leaving OCC and us after a wonderful 14 year career. But she's got an exciting new journey planned, lucky her. Her replacement has not yet been communicated but I'll let everyone know when I hear. Please join me in thanking her for her efforts on our behalf and wish her the best in her new 'life'.
You may have noticed my 'status' on the site has been changed to Mod Vol. They've asked me to continue hosting these Thursdays but to also assume the role of Moderator for OVdialogue nationally. I'm quite honored and looking forward to this new role supporting everyone.
Finally you may have noticed the Teal Tuesday evening live chat is no more for the time being. Flowergirl has had to step away for awhile and in the absence of anyone to host, the live chat has been put on hold for now. This Thursday chat will continue though.
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@Fearless - Vol Mod thanks for the welcome. My chemo went well. Yes I am on the 6 cycles carbo-taxol regimen. Do you or anyone else have any insight on stage 1A high grade ovarian carcinoma with mixed endometriod and serous features? This is what my surgical pathology report showed. Thanks.0
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@Tinazzie never drop your guard, but don't let this disease consume your life either. Just ensure you have a plan with your doctor for on going surveillance, and you're clear on what signs to flag in case it raises it's ugly head again.
As you know I recurred a little over a year post my first chemo. But I knew me much better by then and could sense something amiss. That started a couple of checks of my CA125 and after a couple of months when symptoms continued, even though mild, and the CA seemed to be trending upward they did a scan and there is was. So disappointing since three friends out here, all diagnosed around the same time as me, all stage 3C high grade serous are all still NED going into their fourth years and I've been the only recurrence. But it is what it is and having caught it early and being a candidate for a clinical trial I've just been religiously taking my Olaparib pills twice a day and going into year 3 my recurrence is still stable and not growing. So best of a bad situation but I'll take it.
For you...yes focus on healing, getting back your strength...and a little pampering is nice to have too. You deserve some of that gal.0 -
Is this the 'live' Thursday discussion?0
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@Rad your cancer type is the same as mine. It is an aggressive cancer and that's why most of us don't get diagnosed until advanced stages. You are so fortunate to have had it caught at Stage 1. The odds on cure are so high for you. And it is the most common so lots of research has gone into treatment development. Have you had genetic testing? ie. for the BRCA 1 or 2 gene?0
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Definitely wishing @MarilynOCC Moderator and @Flowergirl all the very best and much gratitude for their support and encouragement to the OCC members.
Congratulations to you, @Fearless - Vol Mod - so glad to hear about your new role.1 -
@Elsie13 yes it is. Welcome.1
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Thank you Marilyn Sapsford for all your work helping us over the years. Very best wishes on your new journey.
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Thanks@ Tinazzie for the welcome and support!0
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Has everyone participated in the survey? Registered for the symposium at the end of October? I've done the first and excited to see what's in store for us at the symposium. This new virtual world has some great advantages...being able to get so many together without anyone having to leave their home. Yipppeee. Cheap and convenient!1
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@BeamBlossom, how are you feeling now? Has the fatigued eased now? I too still get quite tired. According to my blood work this week, still have a while to go before the blood count, especially the neuts, are back to where they should typically be.0
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I was a bit confused at first. The top of page 16, Teal Thursdays, shows 1:25 PM and I thought , today? last week?
Congratulations, @Fearless - Vol Mod , on getting the Vol Mod position!0 -
Fearless - Vol Mod said:@Rad your cancer type is the same as mine. It is an aggressive cancer and that's why most of us don't get diagnosed until advanced stages. You are so fortunate to have had it caught at Stage 1. The odds on cure are so high for you. And it is the most common so lots of research has gone into treatment development. Have you had genetic testing? ie. for the BRCA 1 or 2 gene? Posted this to you a few minutes ago but you may have missed it. The system lag time can be a bit of pain trying to follow commentary @Rad
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Signing off now and wishing all a Happy Thanksgiving!0
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@Elsie13 yes, this platform can be a bit daunting at first. The string just continues so usually a new day will start midway though a page. That's why I"ve taken to starting the session with actual date in my Welcome comment so you know you're in the live chat. It takes a bit of getting used to.1
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Hi All sorry to be awol, had to take a call from my boss. Wishing everyone a great week ahead and a Happy Thanksgiving!1
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Happy thanksgiving @Tinazzie See you next week hopefully. Stay well.0
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Congratulations on your new role @Fearless - Vol Mod, and thank you and congratulations to @MarilynOCC Moderator on your upcoming retirement. Thanks for your service and dedication! I will be signing off as well. Have a Blessed Thanksgiving everyone!1
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@BeamBlossom...hope you're recovering some of your energy now. Glad to see your note on the CCS site that you'd done the survey. Thanks. Have a great weekend and Thanksgiving.0
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@Fearless - Vol Mod
Thanks for all all the insights.My oncologist said he he will be sending me for the BRCA testing0 -
Same to you @cbot Stay well.0
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@Rad that's a great step. Much advancement in treatment has been directed at those who are BRCA positive, although I suspect once you're done with your chemo you won't need anything. But also good to know for the sake of your loved ones. BTW, I'm not BRCA positive myself.0
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Signing out now ladies. Hope everyone has a joyful Thanksgiving weekend. Lots for many of us to celebrate. As @BeamBlossom said, sometimes just those little things. See you all next Thursday.
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@Fearless - Vol Mod.Thanks for the insight on BRCA because I have one child and she is only 23 years old so I would definitely want to know if I am positive.
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I know I'm late..honestly I never get to chat with you on thurs. Afternoons but it looks like you get a wonderful turnout...welcome @Rad...glad for you to join but sad that you had to have cancer. It is a wonderful group full of support and hope...@cbot...you go ring that bell girl! I didnt mention everyone but I hope for you all a wonderful Thanksgiving on however you can celebrate it...thank you all for all your support and all that you share❤2
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Better late than never @Bluebird We're happy to have you with us at any time that works for you. Happy Thanksgiving back...0
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Wow, Thursday October 15. Thanksgiving is over and we're now tracking to Halloween....although I have been seeing snippets of references to the winter holiday season for those crazy over-enthusiasts...you know, the ones who've already finished their gift shopping. I don't know about the rest of you, but sometimes I just wish the world would slow down a bit.
I am getting excited about the OCC virtual Symposium October 23 and 24. Lots there for everyone and if it being a day-and-a half event seems overwhelming, remember you'll be able to pick and choose what you attend and can opt in and out at your convenience. I especially look forward to the opportunities we'll have for live interactions with other participants in our national community of survivors. To register, go to: http://noca.convio.net/site/Calendar?id=100983&view=Detail&s_locale=en_CA&_ga=2.176968613.1676115683.1602695712-81262107.1582745669
And just another reminder to complete the survey, if you haven't already. This is your chance to have your voice heard and your experiences are so important to informing development of programs and resources to better support us. You can access the survey at : http://ovariancanada.org/everywoman
Finally, as some of you know, Marilyn Sapsford retires end of day today. Tracy Kolwich, @TracyOCC ,the Regional Director for BC, Alberta, Yukon, and the Territories will be assuming Marilyn's OVdialogue Community Manager responsibilities. Welcome Tracy.
So....how are you today? What's on your mind? What can we help with? Anything you'd like to share?
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