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).

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Comments

  • angel27
    angel27
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    I did have scans in Ontario when I finished chemo. And have had a couple here 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    I'll also go out on a limb here and tell you that it's such a problem in Ontario that I'm working on a project with Queens U to develop a framework for surveillance and support that we'll pilot in SE Ontario in a year or so.  We've just finished the needs assessment and now working on building an inventory of programs, protocols and processes that currently exist.  Heavy lifting and slow work but we've got funding for it and hopefully post Covid I can get the academics on the project to move a bit faster...LOL
  • angel27
    angel27
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    Wow. Way to go @Fearless. That’s what I call advocating 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Lots to do on that subject but the most important thing to remember is to ask for what you feel you need if what they offer doesn't seem sufficient or reasonable. And if they say no, ask why. 
  • cbot
    cbot
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    Yes, @Fearless. Please keep us in the loop!
  • Flowergirl
    Flowergirl Legacy
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    Have a great rest of the week everyone - stay safe and I hope you all can find a bit of joy this weekend!

  • Fearless_Moderator
    Fearless_Moderator Moderator
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    I was just scanning back on the comments because someone had some concerns about funding for Lynparza if she gets it prescribed..and couldn't find it.  So, I can only speak for Ontario but your hospital will have someone on staff who will negotiate with the manufacturer and your own insurance and whatever else is out there to lessen or eliminate the financial burden.  Hopefully there will be a solution for you that won't break the bank.  But do make sure to engage with someone who knows how to navigate all those financial support options for you.
  • angel27
    angel27
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    Same to you @Flowergirl
  • cbot
    cbot
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    "See" you next week!
  • Tinazzie
    Tinazzie
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    Hi @cbot - it's good that you too are planning ahead re: follow-up - or surveillance! I find that if I go and meet with the care team without my notes or a plan, I get quite overwhelmed and don't mention half the things I intended to! 
  • Fearless_Moderator
    Fearless_Moderator Moderator
    edited July 2020
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    Ladies, it's after 2 EST now and I'm going to sign out although you're all welcome to continue if you wish to do so. Thank you all for participating.  Hope you've found some value gained here and look forward to seeing you again Tuesday.  Remember, you can pop in and pop out and don't need to actively participate if you choose not to.  
    Cheers and have a wonderful week everyone.
  • angel27
    angel27
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    Have a good week and hope to talk next week. Or in between if anyone has anything specific I can chat about. 
  • Tinazzie
    Tinazzie
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    @Fearless great work for advocating and working with Queens - and also for facilitating this afternoon's session!
    Nice chatting with you all and hope to catch up again next week!
  • angel27
    angel27
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    fear fearless is having internet issues but I’m here 
  • Tinazzie
    Tinazzie
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    Hello!
  • angel27
    angel27
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    Hi. So you are in Nova Scotia? 
  • cbot
    cbot
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    HI everyone!
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Ya hoo, I'm on.  Would you believe I got home from Kingston to find all modes of communication out...internet, telephone...the works.  Drove 20 minutes to get out of the grid to get a message to Angel27 and just home to find everything working.  Moral of this story....sit tight and have patience.  LOL
    How is everyone...a glorious day here in SE Ontario

  • angel27
    angel27
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    Yeah!!  Lovely day in PEI. A bit breezy. Passed up a trip to the beach to be online lol
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    So welcome everyone. Hopefully we'll have a few more joining, as long as Ma Bell hasn't let them down. Does anyone have anything specific they'd like to share or inquire about today?
  • cbot
    cbot
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    Also beautiful here in Windsor, ON. Not humid, for a change!
  • CountryLiving
    CountryLiving Peer Support Vol
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    Hello! Absolutely beautiful sunny warm day here in central Ontario. Going for a walk soon.
  • Tinazzie
    Tinazzie
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    I have a question for those who have been through chemo.  I'm on Paclitaxel and Carboplatin and it is playing havoc with my digestive system.  I know it is quite common - but just wondering if the digestive system ever gets back to "normal".  In my case I had a total hysterectomy, so I'm wondering if that too plays a part in how the bowels and digestive system continue to work.  
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Yes, it seems ...at least in Ontario...the weather is beginning to shift towards something a bit more bearable. What a joy last night to sleep with the windows open and feel the breeze.

  • angel27
    angel27
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    @Tinazzie. I had digestive issues before. Sort of self diagnosed ibs. Runs in my family.  I still have some issues 3 years later but that was sort of normal for me. I also had part of my bowel resected 
  • Tinazzie
    Tinazzie
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    Open window week in Nova Scotia as well! Beautiful!
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Tinazzie, I'm going on four years since my last chemo and I still have issues.  But time to time not all the time anymore.  I do find if I don't supplement with a Senekot at night I'm usually headed for some constipation.  But then if I take it too frequently the opposite occurs. So finding the balance is a challenge.
    Anyone else have any digestive issues to share or better yet, remedies that have been successful?
  • cbot
    cbot
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    @Tinazzie, I have digestive issues as well. They increased following, the hysterectomy, settled down after about 6 weeks, and now the issues come and go episodically during my chemo treatments.
  • CountryLiving
    CountryLiving Peer Support Vol
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    Hi @Tinazzie yes chemo certainly does play havoc on our system. Yes the digestive system is effected for awhile. It does get better but make sure to mention to your team as they may suggest help. My bowels were affected by the meds taken but I did try to eat lots of vegetable and drank lots of water. Hope time will help you.
  • angel27
    angel27
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    I have tried some probiotics but forget to take them. Anyone else have luck with that 

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