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

  • Hi All,
    Sorry to be late.  This laptop has become a major pain.  But the good news is that I'm out of hospital as of this past Tuesday.  Turns out pneumonia.  I must say the first half of this year has been a nightmare of issues, most of which have nothing to do with the cancer.

    @babs272 @Bojenka @BellaDonna1959 I see you're with us today.  As usual we may have others join in progress.  I sounds like all is going reasonably well for the three of you.  That's always good news.  Not sure if I'll be back on chemo now.  I have yet to followup with my oncologist and, of course, have an arms length of doctors to check in with now that I'm home.  Just finished with a training session on my oxygen machine.  I'm going to need it for awhile.
  • Hi @Fearless_Moderator… happy to hear you are home
  • Hi everyone. 

    @Fearless_Moderator So glad to hear you're home...but sorry to hear you had to suffer with pneumonia and all that entails. Hoping your healing journey is quick.

    I will be starting Cycle 3 of my trial next week. I do not see the oncologist until Day 1...so no news on what exactly my move forward is going to be. 

  • @bojenk and @BellaDonna1959
    It appears your treatments are at the same hospital.  You migh want to discuss connecting with each other. I know I made two very wonderful friendships when I found out two of our ladies were being treated at the same facility as me. 
  • @Fearless_Moderator and @BellaDonna1959
    Yes, it would be good to meet up one day perhaps when in hospital same days
  • @Bojenka there's no one happier to be home than me LOL.  Gosh those beds are sooooooo uncomfortable and the food.....UGH.  And every time I turned around there was some new doctor or resident to contend with.  But I'm in pretty good shape now and intend to stay that way.  

  • @GloHo… where is your trial ? You have most likely shared that already so I am sorry to ask again.  I am to go to Princess Margaret in July for 2nd consultation re trials. Always interesting info there even if they have no trial for me.
  • @Fearless_Moderator Happy to hear you are back home.  Always feels better
    Hello to @Bojenka and @GloHo
    Back from the market with a friend.  Having as pretty low day as to symptoms and hoping it passes soon.
  • Hello @Strongwoman I am sorry to hear you are not feeling well. 
  • Thanks no one really knows when it hits, how long it will last and we can all pray for fast and swift.
  • You ladies are so lucky you can be considered for clinical trials. The one I was one a few years back bought me an extra two years of longevity.  It truly was a miracle for a while.  Now my kidneys are permanently damaged so I wouldn't qualify for any of them.  It saddens me that that avenue is no longer a possibility for me but you never know what's around the corner.
  • @Fearless_Moderator… so true about the uncomfortable beds, it seems that is on purpose so no one will prolong their stay LOL
  • @Bojenka
    My trial is at the London Cancer Centre. Good luck on your application/consultation for the trial. Which trial have you applied to participate in?
  • @Fearless_Moderator
    Not sure how to ask this...do you think the trial drug has been the cause of any of your current issues?
  • @GloHo
    I wasn’t told about any specific trials yet.  It’s deemed that I still respond to the standard of care ie carbo/taxol so I wasn’t offered any.  But my mutations were run through to see if I might qualify in future once I am carbo resistant.
  • @Strongwoman so sorry to hear you're under the weather.  Symptoms from treatment or symptoms of the disease itself?
  •  @GloHo I highly doubt the trial I was on is contributing to my current string of lousy health issues. Everything that has occured since early January can be tied directly to that undiagnosed and untreated case of Strep Throat. That's the culprit. 
  • @Fearless_Moderator Symptoms from the disease itself. It is progressing. It is the entire abdominal area and feels raw and uncomfortable. I take Buscopan and my breakthrough Dilaudid for it. If it worsens, I will get them to come put in a line for sub cu Pain meds
  • Eileen
    Eileen Legacy
    Good morning everyone catching u on the end. I was in hospital for a few days severe left flank pain with gastric issue. They did ct that was clear but he kept me because i was so much in pain i couldnt walk. Gave me some good stuff tp help. So they admitted me next day then kept me on clear broth fluids because they wanted to do a gastric scope. So got that done. No ulcer but they took some samples. So got to go home. Well this morning woke up in same pain again temp at 38.4. Ok took gaviscon nope 4 hrs later took max pepcid hr later not really much difference. But i just got my arbitration papers back had to send those off to the landlords by reg mail. Crap really hoping they were still far behind in hearing. I guess not. They put more in the budget to hire more people to catch up on arbitration hearing. Mine is end of next month. Dont know what i am gonna do if i have to move. No place out here cheaper than what person with disability pays and what im paying now for rent. Im in a rental that normally goes for over 24 hundred at least. But i pay 1600.
    But on other hand thats off in teg mail all done now i might have to take another trip to hospital and wait another 6 to 8 hrs their
  • @Bojenka Glad to hear you are still responding to standard of care drugs. Always great to be proactive in your care though. Did you do the BioDiva study for biomarkers/genetics? I am waiting for my results...should be in a couple of weeks. It's great that we can get these tests done so that future planning is possible.
  • Eileen
    Eileen Legacy
    On other hand they said my cancer is stable!!!
    Next i guess i am doing an hr long ct to check my kidney function next monday as gfr still at 39.
  • So sorry to hear that @Strongwoman.  My cancer is progressing too.  I can actually feel two lumps in my right peritoneal area and can't help but keep checking them for growth.  I'll see my oncologist this coming Tuesday and I"ll be looking for an update on what is next.  But in the meantime I'm going to enjoy this wonderful weather and my masses of peonies. 
  • @GloHo…I am not sure but I will definitely ask. I was told its a test for 500 cancer mutations and it took 9 weeks time
  • @Eileen You have been through a lot!  I hear you on the housing situation.  I have a phone meeting with the paralegal today at 3pm which is good as landlord wants in Sat to look at house with real estate which is not happening. 
     Glad to hear it is stable and sorry to hear about your hospital stay.  
    What you are having performed is a renogram.  Type it in the search bar and I did a blow by blow of what happens for it. It may help you. It is actually a very relaxing experience of all things we can get done to us.
  • @Strongwoman & @Fearless_Moderator Sorry to hear you are both progressing.

    @Strongwoman I hope you find the pain relief you are seeking. 
  • @Bojenka
    That sounds like the BioDiva study for sure.
  • Well my dear friends. It's 2pm and time to sign off for another week.  While some of us are seeing and feeling progression, so many of you have some positive stories to share and I wish you well in your treatments and trials.  I'll be thinking of each of you with hope and love dear ladies.  

    Enjoy the week ahead.  Looks like it will be a nice one.  Cheers until next Thursday......

  • Have a great weekend everyone!!
  • The weather really is beautiful… hope we can all enjoy it.
    As always @Fearless_Moderator thank you for your upbeat words and encouragement 
  • Eileen
    Eileen Legacy
    Im not sure @strongwoman what the landlord and tenancy act is in ontario if you live their. But here in BC landlords cannot give you. 2 month notice to move out on a condition of a sale.