New Here and would like to help

Hello and Happy Monday
I want to say thanks to all who have put this site together.  I see on FB and IG that there are very many sites for OV in the USA.  It would be great if we can post more on the Ovarian Cancer Canada site.  It seems we are not allow, is there a reason why?

I was diagnosed in March of 2019 stage 3 Ovarian Cancer with a high grade of Carcinosarcoma.  I was operated at the end of March and the tumor was huge.  But I had one amazing surgeon - Dr. Bouchard- to me she saved my life.  With that came 6 rounds of chemo and I agreed to sign up for a new study Dr. Lheureux was doing.
Well fast forward and I am coming to the end of my study ( this June 2021) and will stop taking my pills in Sept 2021.
I live in a small town (Palgrave - Caledon, Ontario) and would love very much to begin some sort of support group/awareness for Ovarian Cancer and of course for anyone struggling with Cancer, even caregivers, children, etc too.  They are the rock for us when we are going through this ordeal.  

If anyone has any suggestions on how one gets started and the steps we need to take - I am all ears!!  I thank you once again for allowing me to join.
Take care and be safe.
Trish

Comments

  • HI @PattyB
    Welcome to OVdialogue. I'm happy you found us and delighted with your interest in engaging in more support to our membership.  Very sorry to hear about your diagnosis, as we always are to hear of one more with this disease. But it sounds like you are in wonderful hands and everything is under control for you.  That's the great news about all the advancements we've had recently in treatments, and new clinical trials that are truly enabling us to live longer and better lives.    

    I'm not quite clear on what you mean about posting from the US sites.  Is your intent to just point our membership to these other sites, or to import their discussions here?  Or am I misunderstanding the question totally? I'm in the middle of recurrence treatment so the old brain cells aren't as quick off the mark as they usually are right now LOL.  Please clarify for me and I can then give you an answer to your question.

    As for setting up a support group for your area, that's extremely kind of you to even think about it. You are correct though. These local groups where survivors can connect in a safe place to share information and talk about feelings and fears and celebrate there success is invaluable.  A few suggestions for you, having explored doing something similar out where I live in SE Ontario. I hope this might be helpful to your thought process, and if you decide to go ahead with something we can talk further, perhaps looping someone in from OCC for additional advice and guidance.


    • My first thought of course is that we are in the middle (hopefully end) of a pandemic and so every support group I'm aware of cross-Canada has either been suspended indefinitely or are using Zoom or other virtual means to connect. But this does make it a good time to spend investigating the possibilities.
    • Is there a community of survivors out in your area? Getting the information can be challenging, given privacy considerations  A small group to start is fine. It will grow by word of mouth over time. But finding those few to start can be a challenge. 
    • I would suggest limiting your group to OVC patients or at the most gynecological cancer survivors.  Creating a group that includes all types of cancers can be a real stretch for all given the issues and interests are so different, and only a few are gender specific.  
    • The Canadian Cancer Society, before Covid, was running three-day workshops for Peer Facilitated Training.  I attended one two years ago. It was free, held in Ontario  at the Hockley Valley resort  and covered all aspects from how to facilitate sessions, to make up of groups, how to create awareness, how to gain sponsorships. And a great opportunity to network with others who had already established groups in their communities.  There were about 35 in our cohort, mostly breast cancer survivors unfortunately for me as I'd hoped to network with some OVC survivors.  But discussions about their experiences getting set up and operating was very valuable.  I assume they are still doing this either virtually now or will pick up again when Covid is under control.  You can try reaching out to them at [email protected] to reach the team who were running it. 

    Just a few things to think about while we all wait to be able to return to some normalcy.....whatever that might mean. Do keep in touch and let me know how you progress in your thoughts. In the meantime, just sharing your own experiences with our members as they reach out for assistance or support or encouragement..or sometimes just someone to listen ...is extremely helpful and I invite you to do that whenever you feel you can offer some support.  And reaching out for your own needs is important too.  We're always here for what you might need.

    Fearless
     

  • @PattyB Hello back to you from Port Credit, Ontario.  I too was diagnosed with stage three ovarian cancer in March 2020 and have the same amazing surgeon and oncologist, Dr Genevieve Bouchard-Fortier.  She's a breath of hope to all of us who are fortunate enough to have her while travelling this journey.  Please keep us posted of any updates on your quest.
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