Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.

Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!

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Comments

  • I see. I’ve been feeling some twinges of kind of a smarting pain in my upper abdomen, so wondered if that might be it, definitely worse when using my abs. It feels very specific in location not an overall sort of pain.
  • Sad to hear of your theft Fearless, hope the attention to it brings more donations to ovc, best way to make lemonade out of it. 
  • @BeamBlossom - I don't know if you mean the same thing when you mention the adhesions, but I've been feeling pain on the right side of my abdomen following my hysterectomy.  And still do.  I call it my pain point on the corner of 6 and 7 (between the 6th and 7th stitch).
  • Hi all! Tuning in late. I'm currently in the chemo suite receiving my 6th treatment.
  • @Tinazzie The Walk went really well I thought. I'm isolated at my farm so basically watched the videos for opening and closing ceremonies. But lots of gals went out on their streets in their bubbles and shared those videos. And lots just posted videos of them and their stories. It was really refreshing being connected across the country and not just in our local community.  Here, I am the top fundraiser for the third year since getting involved. I do spend a lot of time on social media raising awareness and "dipping into my friends pockets".  You must join us next year.  
  • Hey Cbot! Good luck with #6! You will rejoice at the end of this one!
  • @BeamBlossom -I'm now sure if we mean the same thing, but I too have frequent pain on the right side of my abdomen ever since my surgery and still do.  I call it my pain points on the corner of 6 and 7 (the 6th and 7th stiches of my incision).  
  • @Tinazzie your point pain, sounds like it,  ring that specific in location. 
    Since being tasked with self monitoring for phantom symptoms of ovc, I’m a bit freaked out by a twinge of any kind. For me it’s all above the top of the incision, my upper abdomen. 
  • @BeamBlossom the pain sounds very much like what I get. So yes, could be adhesions.  But worth mentioning to your doctor next check up unless it gets worse, in which case don't wait and raise it.  @tinazzie, same thing with you. The pain is sharp for me, just like I tore something or something is twisting or cramping.  But with me it's four separate spots. If adhesion related then given I"m riddled with them that would make sense.  @cbot, great you could make it and congratulations on #6. Is this it for you...get to ring the bell today?

  • Hi @Cbot!  Been thinking of you - and wishing you well with round 6.  Ring that bell loud and proud!!
  • Yes, @Fearless. We have a gong at our cancer centre so I plan to whack that thing!
  • Hello All, joining late as I went for a walk, so nice today and thought I should take advantage of a great day!  Now laying on couch relaxing. 

    I had a mastectomy on Monday (BRCA1+), trying to keep recurrence as far away as possible. 

    Hope everyone is doing well. 
  • @BeamBlossom I know what you mean. This "self monitoring" seems to make us hypochondriacs LOL.  Maybe they'll learn once we all start calling in every time we have a hang nail.  Seriously though, it is hard to know what is important to raise and what is important that needs a red flag attached. That's the nature of this disease.  Just got a call to reschedule my mammogram that was postponed because of Covid and couldn't help wish we had something like that to screen for OVC.....my dream for sure.  
  • @Readersmaven welcome and wow, up and about so quickly.  But you are so wise and brave to go on the attack rather than let this disease and your BRCA status dictate it for you.  @cbot, wow would I have loved a gong and not the bell. Whack it hard for you  and whack it once more for all of us gal!
  • Hello @Readersmaven.  The couch is certainly a good place to be!!  I had a mastectomy in January and hysterectomy in March of this year.  My breast cancer was diagnosed before my OC.  I've done genetic testing, however, I am not BRCA+.  
  • @Readersmaven - Nice to have you hear. Hope you have a speedy recovery. Great the you are out and about already. 

    @Fearless - well I generally had abdominal ultrasounds every 6 months including one just 90 days before my dx. The tool utilized on me, was to send me for an ultrasound which confirmed abdominal masses. I have to wonder if some of our current tools aren’t being used properly and could detect ovc .
  • @Fearless, attack really is our only option with this disease. Since my OC surgery in March, I worked really hard to gain my strength back so I don't want to go backwards.

    Congrats on ringing that bell @cbot , major milestone for sure! 

  • Thanks for your well wishes everyone, and kudos to you @Readersmaven, for getting up and moving so quickly after surgery.
  • @BeamBlossom what you say about testing is our frustration. Hard to battle a disease that is so elusive until it's gone so far.
  • @BeamBlossom I really don't know. If it was just a matter of being more effective in the use of tools like ultrasounds you'd think that would be the first line of attack. I do know that a standard abdominal ultrasound did detect a little cysts in my right ovary years before my diagnosis. But the follow up six months later showed nothing and I was told that was quite usual for them to appear and disappear. Guess I'll never know if someone just screwed up the second and that was actually the start of m OVC.  For me, I've given up second guessing everything in the past. My husband calls it the "shoulda', woulda', coulda'" syndrome.  
  • Until next week,  hope everyone has a great week and you're able to enjoy lovely fall weather! 
  • @Readersmaven the good news is that we're on the cusp of a screening tool so woman can be diagnosed early. I understand one in Quebec is in final trials and there is another the US that sounds promising. So hope for the future on the horizon finally.
  • That would be great for sure! 

    Have a nice week everyone.
  • Ladies, it's 2 and I see the CKWS TV truck in the driveway so best I exit and put on a bit of lipstick.  Please continue without me.  Wishing all of you a wonderful week and hope to 'see' you all again next Thursday.  Hmmm, wonder which is my good side  :)
  • @Fearless - that’s wonderful news!
    I think one of the challenges is that the high grade grows so darn fast.
    I try to stop my brain from shoulda woulda too! It doesn’t help us much now. But controlling our thoughts, living for the present and not succumbing to assuming the worst does help us now. So, I try to stay in that thinking.

    wishing everyone a good week ahead, gotta go for now. All the best!
  • Have a good week everyone! I'm signing off. You'll do great @Fearless!!
  • Welcome to our chat today, Thursday October 1. Ouch, it was hard typing the date....I can't believe it's October already....

    The local TV station did run a clip about my stolen veggie cart which I used to solicit donations for the Walk of Hope.  Amazed at the community response and was able to add more much needed $ to my donations raised this year.  So out of a tragedy came some good, thankfully.

    Attended the International Gynecological Cancer Society virtual Summit last Saturday.  I added my notes/takeaways under the discussion topic I had opened a few weeks ago if anyone is interested.

    Very much looking forward to the OCC  National Symposium at the end of this month. If you haven't yet registered go to:  http://noca.convio.net/site/Calendar?view=Detail&id=100983  I typed in a couple of questions at the end to the "Ask an Expert" section and now can't recall what they were....does brain fog ever end  ;)

    And do make sure you participate in the survey OCC just launched.  The better they understand our needs, the better they can continue to support us and advocate effectively.  ovariancanada.org/everywoman to access the survey

    Last but not least, we have a number of our gals in the midst of treatment right now...some coming to conclusion, some experiencing a lot of challenge getting to the end.  This is a good time for us to remind ourselves that we are a circle of support; here to help celebrate successes and here to wrap a virtual arm around those who need that hug right now.  

    So that's it for me......how are you today? What's on your mind?
  • Hi @Fearless! Glad to hear the good news re: the veggie cart saga, and thanks for the resources! I'm one week out from my 6th chemo. It was a rough one! I hit that gong really hard. Finally beginning to feel better. I have CT scan Oct. 15 and will review results with oncologist Oct. 26. Looking forward to updates from anyone else joining us today. 
  • Hi ladies!  I am due for my 6th treatment next week.  It was changed from Thursday to Friday.... so much for Thanksgiving!  I am anxious about what comes next.... I do know I have to work on my strength and stamina.  I have gained weight through this treatment.... certainly not what I was expecting.... 
  • @cbot so glad the chemo is behind you now and that you're already feeling some recovery.  Hoping you scan shows how well worth it it has all been.  Assuming you've got a clean bill of health and ready to move forward, don't forget to ask about maintenance trials...just in case there's something new that might apply to you.  OCC just announced four new ones the other day.