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 ([email protected]).
Hi everyone, there is currently a glitch in the system that is causing the notifications you'd normally receive to your personal email inbox are not being sent. The platform provider is working on this and hopes to have this fixed as soon as possible. In the meantime, please be sure to sign into OVdialogue often so that you don't miss any conversations, personal messages, or new posts. Thank you for your understanding.

TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)

24567192

Comments

  • very true fearless 
  • I suppose the look good feel better program is not running right now.  Too bad. That was helpful to me 
  • beamblossom, not sure about Facetime since I don't use it frequently but if you engage in a Zoom, you can turn off the visual.
  • I can get to looking great with enough time for hair or i should say wig and makeup, but need a heads up for that.

  • I have to take a medical call at 1:30 so I'm signing off now. Bye bye. 
  • Hi everyone...better late than not at all!

  • hi tinazzie.  Take care beamblossom 
  • Hi Tinazzie, great to have you join us.  We're all having a wee struggle with the way the comments feed in but we're managing.  Any thoughts on the topics we've been discussing or anything you'd like to raise yourself?  
  • Bye @Beamblossom....hope to see you next Thursday
  • Just an FYI - the Look Good Feel Better Program is running, but online only - It's in 2 parts - makeup and wigs/head coverings. I did both online. Would have preferred in person, but it helped!
  • Did you still get all the freebies?
  • That's great info cbot. I didn't even know it was available when I went through my first line care. How would someone access the online...?
  • Hello everyone - popping in to say hello and yes, I hope you get to enjoy those nature creatures!
  • Looks like Flowergirl just joined us.  Hi @Flowergirl  Hope all is well.
  • Gee there is a program that gives out freebies and I missed it!  Ouch.
  • The link for online Look Good Feel Better workshops: https://lgfb.ca/en/workshop/
    Unfortunately, no freebies were offered with the online classess.... :/
  • Darn I got all kinds of free full size skin care and makeup. It’s all donated 
  • Hi - glad to be on too.  I haven't been able to read all of today's topics yet, but did notice the one on post-treatment vacuum.  I'm not in post-treatment yet, but my 6th and final chemo round will be next month, and I wonder what happens then.  I don't seem to get much info from my oncologist on the topic.  He does not appear to advocate frequent scans.  I see many of our sisters post that they are NED - and I wonder how that determination is typically made.  Any help or answers on that?  Thanks!
  • They did say to the online participants that we could attend in person in the future once it starts up again (if it is still relevant for us).....
  • Hi @angel27 Welcome from NS!
  • @Tinazzie. Normally you do follow up at spaced intervals. Close together to begin with.  Not sure if COVID means they might be by phone.  As I moved out east I see a gynaecologist and get scans once a year about 
  • Beamblossom started a discussion yesterday on that topic Tinazzie but not sure anyone has commented as yet.  NED determination is usually measured by your CA125, at least here in Kingston.  Watching it decline indicates the drugs are working and hopefully by the end you have been steadily in the 0 - 35 range which is what they consider NED.  
    As for a post treatment plan (they call it surveillance), at least here in Ontario there really isn't any standard. It's one area you have to advocate to get the followup you feel you need.
  • I have not been on any follow up drugs. But I was not brca. I keep meaning to check that they are doing ca125   My regular doctor would do those 
  • and they may use the CT or MRI to confirm no visible disease present. 
    You should also ask for or receive a transitional appointment (moving from treatment to followups) which outlines your future care. And yes, every province and situation for the person is different.
  • Great - thanks for the info, @Fearless and @angel25.  I guess like most of the process, we need to advocate for what we feel we need - good reminder!!  
  • And for certain, that is the most important part @Fearless... advocate to get the folllowup you feel you need.
  • Angel27 it does sound like there isn't any consistency across the country, and probably within provinces on how followup is managed.  Sad to say how lacking that is when it's a critical time emotionally for most of us. I was told just to call if I felt I needed to be seen.  That''s when personally advocating kicks in. I nicely but firmly told my oncologist that wasn't an acceptable approach and for the first year we negotiated a check up, with blood work and CA125 every 3 months...

  • Thanks for all of the info re: post treatment follow up - I am scheduled for round 4 out of 6 treatments next week, but I am planning ahead re: follow up. I understand that I will receive a CT of chest, abdomen and pelvis and CA-125 test immediately post treatment, and then follow up every 3 months but I don't know yet what those follow ups entail.
  • Unfortunately PEI doesn’t have the same resources as Ontario and there was not a qualified oncologist. So I saw gynaecologist ever 3 months to start. About ever 6 months now