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).

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Comments

  • ToughAsTeal
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    Beautiful!  Is that the Butterfly Conservatory near Cambridge? I have never been, never took the kids despite it being so close. Our children, even now as adults, swat at bees, etc. 
  • Taita
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    What lovely picture. So beautiful. Thank you for sharing. 
  • ToughAsTeal
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    @Taita that sounds wonderful!!! My brother-in-law and wife escape the Yukon every winter to Mexico for a few months. 
    @Strongwoman being caregiver to your aunt, I had to step back somewhat from trying to help my aunt (83) who wants help but doesn’t want it. When I feel stronger I will step up again. Right now I am just doing weekly phone calls and emails. 
  • Strongwoman
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    @ToughAsTeal I am cleaning as I am emotionally upset with a family member and attempting to get myself out of it. The member is going through something but lashing out and needs help. So my go to when I am upset is CLEAN!!!
    @Taita I took out a roast chicken and will get it ready to go in the oven soon.
    @ToughAsTeal Palliative sedation, I believe is an agreement between you and your physician. But I will check with my palliative nurse this Tuesday and confirm that for you.
  • Strongwoman
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    @Taita So jealous that you will be headed somewhere warm and sunny!  Enjoy, take pics so you can share with the rest of us when you return.
  • Strongwoman
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    @ToughAsTeal YES!!! That is exactly where I went. My friend took me on Tuesday.  I haven't been in years. It was wonderful to return to it. So we have made plans to go to the zoo in March when her nephews are here for March Break from Calgary. Again, another place I haven't been for years.  It is so difficult to be there for the elderly while dealing with our own stuff but I am thankful I was in a place that I was able to this time and was feeling strong enough to do so.
    How are you doing these days?
    @Taita  Where are things at for you this week?
  • ToughAsTeal
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    @Strongwoman my pain has increased a lot this past week.  Talked with doctor… next step will be a CADD pack? It’s a device I would carry around that I can self administer pain med, similar to the button you can press when in hospital.  For now, I will continue to increase frequency of pain pill, and not to worry about it being “every 4 hours”.  Some days are better than others.  Edema continues in left leg. Wrapped 3x week. Massage 1x week.  Some nurses are better at wrapping.  Still on the slow reduction of dexamethazone.  A few weeks away from being off it completely. 
  • Strongwoman
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    @ToughAsTeal Wow!  How far they have come with things these days.  I am glad there is something like that out there for you.  I find it difficult to take pills all the time but know why we have to do it. I am not at the stage you are at yet. How are you coping mentally with it all as I imagine there is a lot rattling around there regarding all of this? If you feel comfortable sharing with us today.
      I agree, some nurses have the compassion and fortitude to do their job and do it well and others you know don't seem to care and are going through the motions to get through their day.  I am forever thankful when I get the ones that care and show compassion. 
      I bet being off of the Dex will be wonderful for you.
  • Taita
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    @Strongwoman what a beautiful outing. Zoo is always fun. I find I need things to look forward to understanding that it may not always work out. 

    Things are good. The usual side effects are rearing their ugly heads but all manageable. My biggest issue is the continued and significant loss of sight I am experiencing. They are monitoring it but little can be done. We think it started with the clinical trial and the current treatment seems to be continuing down the same path. CT end of March unless something changes. CA125 rising. The usual roller coaster we are all on but all in all doing okay. 
  • Taita
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    @ToughAsTeal I am so sorry your pain is increasing.  Some things I guess we don’t have much control over and I imagine your are juggling a whole brunch of things as well. I had a friend who had a CADD pack and he found it very convenient. So hopefully that will be the case for you. 

    I am signing off for now. Have a great weekend everyone. Sun on Saturday!!! Yay!! 
  • Strongwoman
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    @Taita I am sorry to hear that.  How do you deal with the sight issue?  Have you had to make any changes? These side effects we go through and the deciding factor of the cost of if we do versus if we don't is very tough on us all.  Has this loss of sight put forth an appreciation for some things versus others?  If you feel comfortable sharing with us how you feel of course.
  • ToughAsTeal
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    @Strongwoman on the days I am trying to manage the pain it gives me little energy to think about other things. And the pain meds often make me sleepy.
    havnt knit this past week, no reading. 
    Recommend movie on Netflix called “the Estate”. Good fun (especially with comical outlook on cancer). So it was good for my headspace
    @Fearless_Moderator  I am thinking about you and hope things are still moving forward for you 
  • ToughAsTeal
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    @Taita I am sorry might have missed an update how things have been for you. Is the vision change temporary? 
  • Hello - although I see it’s almost time for goodbye!  Sorry, seems I’m always rushing in Thursday afternoons!  Mostly medical related. Just a quick check in then. How is Fearless? 
  • Strongwoman
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    @ToughAsTeal Yes, I find any increase in pain meds causes some drowsiness especially initially so I can see that point you made.  You have to go with what you feel in the moment and day to day.  
    Thanks for the tip on the movie, I will check it out.  
    I watched Brene Brown's Atlas of the Heart on Crave and thoroughly enjoyed it.  As I was dealing with this family member situation, I went to bed and then my AHA moment came.  I texted my friend, I said "I know what to do.  I am going to Brene Brown it!"  So, I drafted it, relooked at it this morning, sent a copy to my friend, she did some editing and then sent it.  Like that is even a term "Brene Brown it!" LOL
  • Strongwoman
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    @Tinazzie Welcome.  No worries, I don't mind continuing it for a bit longer.  Welcome
  • Strongwoman
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    @Tinazzie I am unable to answer the question you posed on @Fearless_Moderator I am currently waiting for a response to a message I sent earlier and if there are any updates, I will pass them along to the group.  For the time being, I am going to hope that she is napping and resting and will join us next week.
    What's up with your medical stuff if you would like to share?
  • ToughAsTeal
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    Signing off. My husband has his tools out and is going to hang my framed Elvis 45s!! He has been waiting for 2pm.  Hope everyone has a good week. And @Fearless_Moderator know how many are thinking about you!! 
  • Strongwoman
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    @ToughAsTeal Have a wonderful week and how exciting!  Send a pic!
  • Thanks!  As you may know, I had to primary cancers - Ovarian and Breast at the same time. 2 years since diagnosis and treatment, my breast cancer recurred with mets to the liver and bones. So have in treatment for that since Oct. 
    with some mixed results. But still hangin in there. More scans early next month so will get a clearer pic of what’s happening! 
    Take care all of you!  Will be in touch again soon. 
  • Taita
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    Thank you for asking about the sight issue. It is getting debilitating. I can only read an inch from my nose and it just exhausts me. Computer work is next to impossible and I have a pair of glasses that allow me to drive but just. I have gone from -225 to -975 in 7 months plus developed a cataract out of the blue which makes everything fuzzy and I am on my 5th pair of glasses/lenses in the time frame. It gets expensive as well!!  Hard to read meds and I feel my tiredness is as much from that as it is the chemo. 

    My iPhone is helpful because I can increase the font. Downloading audio books for Mexico. Have a checkup in April so we will see.  
  • Have a great trip to Mexico @Taita. My bestie has gone for the winter to North Carolina and I was tempted by her invitation to come down a week or 2, but no, it’s not for the feint of heart. I don’t think I could do that!! 
  • Strongwoman
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    @Tinazzie Thank you for sharing a brief back story to refresh my memory.  Glad you are still hanging in there.  February thankfully seems to go by quickly so I am hoping you will have some more concrete answers soon and will be able to determine your path whether that is the same or different.  Catch up with you next week.
    @Taita Your welcome, thank you for feeling comfortable in sharing as well.  That would be tough and I would struggle with that as well.  I imagine it would become expensive.  Is there anything your pharmacist can do to help you with the medication part?  It might be worth asking. 
    Enjoy Mexico and thank goodness for audio books.  
  • Strongwoman
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    Signing off now ladies.  Continue on your journey. See you next week here and reach out if you need something before then,
  • Have a great rest of the week @strongwoman!  
  • Fearless
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    IT'S THURSDAY FEBRUARY 16 AND WELCOME TO TODAY'S LIVE ONLINE CHAT. YES, MY FRENDS, i'M BACK AND LOOKING FORWARD TO RECONNECTING WITH ALL OF YOU.


    One thing I learned these past three weeks is that it's not alway about cancer and we should all be diligent when it comes to our health outside the confines of treatment and side effects. What I had assumed at the beginning of the year to be an exeptionally sore throat brought on by chemo turned out to be strep throat; a kidney biopsy revealing the culprit of my lack of voice and diminished kidney capacity.  A week in hospital later I comtracted Covid so my last three weeks were spent confined to my room with appropriate drugs pumping into my system.  I'm fine now, albeit tired and so out of touch but so happy to have wrestled down one more blip in my journey. 

    I"ll be spending the next week trying to catch up. There sure was a lot of activitiy on OVd and much to acknowledge.  My thanks to our two Peer Support Volunteers, @Strongwoman and @ToughAsTeal, for their help keeping our site alive and trying to ensure each of you was acknowledged with the same kindness and compassion that is the trademark of our message board.

    Now, with out further ado, let's get started with today's chat.  Who's out there and what would you like to share with the group today?

  • ToughAsTeal
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    @Fearless_Moderator helllllloooooooo!  So glad to have you here!  You have had a heck of a start to 2023.  Gosh I hope you had a room with a window. I think every hosp bed should have one.   You are home now? 
  • Fearless
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    Thanks for the warm greeting @ToughAsTeal.   Yes, got home Monday late afternoon and I can't tell you how glad I was to see my dog and curl up in front of a big fire with my husband.  Yes, I actually had a lovely room...window with view of Queens U and the lake and private since I was isolated because of the Covid....that said they let my husband visit every day and thankfully he didn't catch the Covid from me.  But ugh to hospital food.  Finally found something palatable and ate the same things every day.  Three weeks though was far too long and now I have so much to catch up on.  
  • ToughAsTeal
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    @Fearless_Moderator some people go to Mexico for 3 weeks during winter…. Not that you had a choice for destination!   What was first meal you looked forward to when you got home? 
  • Welcome back @Fearless happy to hear you are back home in front of fireplace. Sure beats hospital and makes us aware how good it is to be back home.