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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  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Elsie13
    Thanks. I guess something wrong with technology then. I do know they were refreshing and and whatever else they do for maintenance so likely it affected the functionality of OVd.  Much appreciate your feedback. 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    THURSDAY MARCH 11, and if your roots are Irish like mine, it's only 6 more days to corned beef, cabbage and boiled potatoes...or for some green beer! 

    WELCOME TO TODAY'S LIVE CHAT !  Or at least hoping I'm welcoming someone, unlike last week.  Other than our friend Beamblossom who had a challenge connecting in, I was pretty much alone...sniff sniff.  But I hope that just meant everyone was far more occupied with non-cancer related things. With spring around the corner (we hope...yes I am the eternal optimist) I think we may be having more days where everyone is out there in their gardens or going for walks or drives and just enjoying the smell of the new season unfolding.

    So for who ever is online today....what's top of mind?  Treatment?  Recovery? Diagnosis? The Covid vax? or just want to chat about anything and everything?   


  • Readersmaven
    Readersmaven
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    I'm here this week ;-) been enjoying the warmth for from sun, really feels like spring.
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Hey @Readersmaven thank you for joining in today. So nice to have you back.  And yes, isn't this change in the weather refreshing.  It sure does a lot for my perspective. How is everything in your corner?

  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod how are you? Hope this is a good week for you. 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Readersmaven
    thanks for asking. Pretty good right now. I do find the side effects from treatment often hitting later and lasting longer.  My Day8 Gem treatment went fine. But Day 10 they give me a shot called Lapelga that stimulates production of white cells in the bone marrow. Nice they have a one time shot now, rather than the weeks worth it used to be and when I firt started it was fine. But the last two I've found some uncomfortable bone pain, usually in my lower back and hips. Thankfully some Advil and Tylenol ,manages it though.  Yesterday I could feel it going and yippee...today it's gone. Now I don't go back until the 24th so I'm going to enjoy these next 10 days.  Like everyone though, I'll be glad when the chemo is over. 
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod... I'm OK, trying to focus on things I can control, not what it's out of my hands.  

    As I mentioned, I'm supposed to be getting radiation. Had my mapping scan, however I was told end of last week that the scan wasn't clear enough for radiation plan to proceed. I've been referred to a radiation oncologist in London and have a phone appointment on Friday. Needless to say, I'm frustrated by delay as this has now been in process since end of January. But what can I do? Sigh!
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod good attitude...absolutely focus on the good days!  
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Readersmaven
    I hear the frustration.  Funny but I've helped people to manage change for years as part of my professional life, but I'm actually one of those people who thrives with structure and things happening when they're supposed to happen.  I'd feel the same as you in your situation.  Especially given most of us of the mindset to get treatment happening NOW, not later.  Just be patient. Clearly something didn't work as expected and they're trying to ensure they do it right.  Sure doesn't help lessen the anxiety though, does it?
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod I know you're absolutely right about this and like you I'm a planner so I find it challenging. 

    Of course I want them to get it right, but....

    Anyway, hopefully the specialist will have some insight for me tomorrow and things can move forward. 

    Any plans for your upcoming good days? 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Readersmaven
    I recall you were looking for others who had experienced radiation and some tips from them. Did you find what you were looking for?  Are you feeling more comfortable or better equipped for when they do get it started?
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @readersmaven I have such a back log of things  to do.  I think I've become the world's best procrastinator.  So my biggest challenge will be setting aside time for ME....just that hour or so a day to get out for a walk, or just sit down by the lake and enjoy the weather. Otherwise, I've got taxes to deal with, a laundry backlog that I swear I'll never dig out from, and the house is growing dust bunnies as write this.
    What about you?
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod I didn't get a lot of response but I did find some postings on the suggested concentrated treatments and how others have handled them for other cancers so I'm feeling better prepared if and when they come.

    I also have a scan scheduled for next week. My oncologist wants to see what's going on in there as I'm having intermittent pain. 
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod...can you hear me laughing? Thought I was the only one who had a vacation property for dust bunnies  

    I did do a bit of purging last weekend and have some things to drop off for donating. I do feel more motivated by good weather. Want to keep at it albeit slowly. 
  • DebbieK
    DebbieK
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    Thank you
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @readersmaven I hope the scan goes well.  Just remember that intermittent pain or discomfort can often be scar tissue or adhesions...and often the scans don't pick them up.  If you recall I had that surgery last fall and when they got in there I was full of them. It answered some questions about weird sensations I get from time to time...like a muscle pulling or twisting, or an almost tearing sensation when I twist my body.  Apparently I have more than most though. But they are really normal following the surgery we all have.  Could just be that.  
  • Sylviequebecbc
    Sylviequebecbc
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    Hi Ladies! Just joining now.  Nothing new on my end...
  • Readersmaven
    Readersmaven
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    Other positive notes...I was able to hang load of laundry out on line yesterday...love clothes fresh off the line! 

    Also, I'm now on week 9 of my 12 week exercise program from Calgary. I highly recommend it.
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Hi @DebbieK
    Welcome and glad you made on to the chat.  You might find this a bit slow and jerky in flow. It's the the nature of the platform they use for OVd but one that were trying to improve on.  So often the comments are not in sequence. @Readersmaven I'm sure will agree we all get used to it.
    So DebbieK tell us a bit about you if you're comfortable sharing.  
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Sylviequebecbc great to have you back with us....and no news is usually good news.  I know you're in BC....are you seeing signs of spring where you are?  

  • Sylviequebecbc
    Sylviequebecbc
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    @Readersmaven
    Spring is in the air! That is something to look forward to! 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Readersmaven I'm glad to hear the exercise program has been a success so far. I have the link to it that you gave us a while back for anyone who might want it for future reference. Tell me, what do you notice the most from having worked through the program so far?

  • Sylviequebecbc
    Sylviequebecbc
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    @Fearless - Vol Mod
    Hi! Yes, spring is hopefully around the corner.  I live in the southeast of BC, so we get lots of snow, which is melting now. The birds are starting to come back, and the sun is shining today! 
    Hiw is it where you live?
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Sylviequebecbc
    I'm in SE Ontario, on Lake Ontario. The ice is almost totally gone now. It's amazing how fast the channel clears and before we know it the ships start passing again.  We've had our first few days of double digits and lots  of sun and blue skies...although I see rain on the horizon coming. But that should wipe out the last vestiges of snow left on the ground I'm just looking at my front lawn and amazed to see bits of green already poking through. And wow, while I always look for the robins to appear, yesterday morning I saw the most beautiful cardinal perched on one of maple trees.
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod the program has really increased my strength and endurance which I was really hoping it would. It's really easy to spend winter laying on the couch and then you add covid and mental stress. So is really helped on many levels and came at a good time. 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Readersmaven
    I have to admit to having been too much a couch potato this past winter.  I think I spent the first four years of having this disease trying to stay mentally and physically occupied that I just crashed when my current recurrence hit.  Having been out of chemo treatment for four years I forgot how debilitating it can be if you let it run your life...add to that Covid and winter and I just vegetated far too long.  But, I'm back in the saddle again and raring to go. 
  • Sylviequebecbc
    Sylviequebecbc
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    @Readersmaven @Fearless - Vol Mod indeed! My husband helped me staying active this winter, as much as I can/feel like.  My brother suggested I get a fitbit that can remind me when I am inactive too long...I may try an alarm on my phone that buzzes if I have been on the couch too long! 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    BTW ladies, they've just communicated in Ontario (if I read it right) that those with chronic illness and/or immunosuppressed systems and their primary caretakers will be in the next round of Covid vaccinations (April timeframe), regardless of age. Woo hoo!  That said, the info on how to find out when we can book and how we can book and where our vaxes wil be administered is still rather confusing...at least  to me.  
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @Sylviequebecbc
    Love the alarm reminder idea..... a cattle prod might have worked better for me though.  But yes, it's easy not to realize when you haven't moved around for awhile.  
  • Readersmaven
    Readersmaven
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    @Sylviequebecbc I have a Garmin fitness tracker and am enjoying it. I track my activity and it is a good reminder to exercise and to also acknowledge how much I've actually done.  It's easy to feel like all I've done is binge Netflix! I can look back and say, ok not so bad!

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