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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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  • Hi. I think I'll join everyone in the "UP" crowd today. This is going to sound weird. My head is clear for the first time in a long time. I'm not complaining, but I just had chemo (Caelyx/Avastin) yesterday and was not expecting to be so alert today. I also had some side effects last week and we were unable to determine what caused them. Was it a reaction to drugs used during port placement? Did the drugs during port placement trigger my Caelyx/Avastin side effects? Or was it just a coincidence that my Caelyx/Avastin side effects showed up immediately following my port placement? In any case, hives appeared extensively over my body, but only my back was bit itchy (thank goodness), my fingertips became red and sore (not my palms), and my tongue was a little sore (but no visible sores). These side effects lasted for 4-5 days, and all but the rash (without bumps) disappeared. So I am waiting to see if any side effects appear in the next 2-3 weeks that are traceable to the infusions I had yesterday. If not, I'll chalk it up to whatever they gave me during the port placement and move on. 
  • Fearless
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    To all......just off a call with my French counterpart and some of our lovely OCC ladies.  Looks like we'll be a getting the much needed refresh of the look and feel of this OVdialogue site by end of March.  They are updating the main OCC site and wanted our pages to have a similar look and feel and so far it's looking very updated and fresh and with what doesn't seem like too much change for us to learn.   Stay tuned and I will be giving you 'sneak" peeks as I'm able.  Your input is always helpful and wanted.  
  • Strongwoman
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    @Fearless_Moderator
      Looking forward to seeing what the 'fresh' new look will be!
  • Taita
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    @Strongwoman never any apologies. We have all been where you are and processing our very real anxieties and feelings are the best way to deal with them. My Aunt gave me a great piece of advice. May sound a bit simple, but I write my frustrations/anxieties  down and once I have read and reread them i use a black magic marker and put a big X through then.  When I look back I have moved past a LOT of X’s!  Gives me strength sometimes when I need it. 
  • ToughAsTeal
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    @Strongwoman  thank you for sharing about the funeral.   It truly is here, that we can be vulnerable and I know how that helps me. Maybe not in the moment, but as I reflect until the following Thursday at 1pm.   
    I just made a quick tearful call to surgeon who did my colostomy and now have an appointment to see if anything can be done about the tennis ball protrusion it has become.  Here is my “fun”, my cousins and I sprinkled sugar on the stoma and it shriveled up like Wicked Witch bucket of water.  
    I am inbetween reading everyone’s posts please forgive me… I am finally able to send some pics of my knitting… 
  • Strongwoman
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    @Taita
      Thank you.  I am actually writing which may or may not be a book.  I have been writing for a bit now.  I haven't written about yesterday yet.  I keep reading all these books on dying and death and grief etc and what I feel I am missing is the 'what it's like to live like in a day of'.  Especially with our type of cancer.  I have entitled it 'From the Hip' and we will see what happens with it.  If nothing else, it is me and my account of what I have and am going through.
  • Strongwoman
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    @ToughAsTeal
      Beautiful work!  Looks like your daughter loved it!  
    You did what to your stoma?  So I can picture this, is this while it is not part of you and you don't need it anymore or while it is on you?
  • Fearless
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    @Strongwoman
    We all have our dark moments and each of us deals with the prospects ahead in our own way.  The value of this site is the open sharing of feelings and information that serve, in their own way, to help others absorb and deal with their own feelings.  Some like you want or need to delve deeply into dying; others are quite content allowing denial to serve them best.  All of us benefit in someway of knowing we're not alone no matter how we feel and where we are in our journeys. 

     

  • Strongwoman
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    Well watching 'Emily in Paris' helped.  Just seeing a beautiful romantic place and then the clothes these ladies wear are incredible.  Some I look at and say in my head "Good for you" and others i am mouth agape saying "wow".
  • Fearless
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    @ToughAsTeal
    That sweater is lovely, as are the toques. I just love that feeling of accomplishment when I finish a project...actually Taita's suggestion of writing down and Xing out all the negative crap would work for that too.  Love that idea of looking back and realizing what junk I had that could have weighed me down and instead turned it into a motivator to keep plowing ahead.  Anyone else have any activities along those line they could share with us.  Me?  I just have a post-it on my bathroom mirror I look at twice a day.  When I get up in the morning I read the top half that says: NOT TODAY, and when I go to bed at night I read the bottom half that says: AND NOT TOMORROW EITHER!  
  • Strongwoman
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    The boys and I are watching "Kaleidoscope" and have one more episode to go tonight.
    What is everyone else watching?
  • ToughAsTeal
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    @Strongwoman the ostomy is permanent… and right now it is basically a large, a bit oblong, shaped tennis ball size that hangs, unsupported outside of body I guess where transverse colon meets descending colon.  I pretty much am always cupping it with one hand.. careful not to bump it. It does not hurt.  I have been told I am not a candidate for another surgery. So, i started to google and came across manual techniques that sometimes work where the colon is manipulated/pushed back into the body.  Sometimes after a technique is used by pouring good old household table sugar onto stoma, and it shrinks. I guess key is to start this method soon as prolapse has been identified. I might be beyond that point but hoping not.     The edema may be adding to it as well. Stupid cancer. But I have this mental clarity that I knew deep down if I got angry enough at myself for putting energy into tears that I might bounce back. So.  Hospice is checkmark done. The memoirs book underway.  Called the surgeon. Wills are done. Pre arranged cremation paid for.  And a whole bunch of knitting projects still to complete!  I am just so happy I got my running shoes on today!!!  If I push it, I might make my husband polka with me in the kitchen!?
  • Fearless
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    Totally addicted to Tulsa King. Sly makes me laugh uproariously.  Of course my eye candy is Kostner in Yellowstone followed by Rip for whom our dog was named.  Then any binge worthy series just to get through my insomnia without having to change stations.  OMG I even binged the Kardashians one night...that's how low I go some days !
  • ToughAsTeal
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    I love the post it notes!!! 
    Emily in Paris had been recommended by friend so it’s on watch list.
    I watched movie yesterday called Meet Cute.  Um… ya… not what I hoped it would be.  
    Yes, I am reading Spare.  And referrer-ing my two cousins who have very different opinions on it! 
    Great song to get day started… dating myself… Patrick Hernandez “Born to be Alive”.   
  • Strongwoman
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    @ToughAsTeal That is interesting to here about the sugar. Interesting find and who knows, keep trying it and see what happens?  Glad it doesn't hurt you.
      Hospice?  Does that mean I might see you next week there?  
      I agree with you STUPID cancer.  Let us know what the surgeon says.  I am like you and know that any further surgeries are off the table as well.
      What a sense of self and pride of being able to do the task of getting shoes on, to some may be insignificant but when you were unable to do it before it is a HUGE hurdle overcome. Good for you and your body!
      Go for it, if you are up to it...get him to do it.  Would be good for you both!
  • Fearless
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    @GloHo how great to see you up and preparing to shake off the "what caused it".  We can go crazy trying to overanalyse every feeling or issue.  You're doing just the right thing...check to see if it ties to something you suspect might have ignited the issues and if not, write it off to chance and hope it doesn't come back.  
  • Taita
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    I am looking for something “up”. We are watching the Royals right now. A bit over the top but entertaining.  We watched a movie with Kevin Costner (I can never remember the names) and I couldn’t sleep that night. It was dark and involved a child and it was too much. So now I am actively searching for series that are lighter. I loved Emily in Paris and the Magnolias!! I would love any suggestions. 
  • Hi Everyone, wanted to wish everyone happy New Year! Love the knitting you have done ToughAsTeal. I have the same moments as you do Strongwoman ie thinking about my husband once I am gone, and it makes me cry as well.  My sister gets upset for me thinking such thoughts but difficult to control emotions.  On positive note I had CT scan done on Monday (must bring my own juice next time for the contrast dye as no longer provided at Credit Valley) but most importantly there are no new nodules and other 4 are stable.  So reprieve for now, and happy dance.  Still get strange pains in the back rib are but have to think it’s something else.
  • Strongwoman
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    @Fearless_Moderator @ToughAsTeal
    Nice! We watch Tulsa King too as well as Yellowstone and Rip would be my first choice!
    Can't say I have watched anything on the Kardashians.
    Heard "Spare" is getting both positive and negative reviews so will be interested in hearing your take on it.
    I read a book that my Mom got me of a local author up her way.  She asked if I wanted the second one and declined.  I did say that the book has a good plot but the author needs to work on her writing,  I felt like I was reading a cross between a highschooler doing an assignment and was worried about the word count so therefore was trying to fill it in and my one sister telling a story which you are constantly waiting to see where she is going with it and why she had to tell you all that other garbage.  I did say my critique would be to work on the meat of the plot and expand more on it and get rid of the garbage verbage.
  • ToughAsTeal
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    @Strongwoman the Wednesday at hospice will be another next big step. Waiting to be matched with a one to one support still.  When eventually I go to my first Wed, I will maybe wear a red carnation (like in those old war spy movies) .  The phrase will be “the cat wears pink pyjamas” The response will be “only when the moon is full on a Tuesday”
  • Strongwoman
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    @Taita
      I know what movie you are talking about.  I watched it last weekend too.  It was slow and dark.  I think they tried a little too hard on it and was trying to emulate a bit of feeling from Yellowstone.  No comparison between the two.
      I enjoyed Firefly Lane
  • Fearless… I like Tulsa King as well. Watching it second time and like you find it very funny,  Bindge watched Emily in Paris as well…wow her wardrobe is something else. :))
  • Fearless
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    @ToughAsTeal, gal based on all you've accomplished you were born with running shoes for feet!  I recall you were interested in hospice particularly related to one to one connections.  I know the new OCC partnership with Wellspring provides for some kind of one to one support capability.  Did you check that out at all?  Some one told me their inventory of support folks are not necessarily OVC survivors and that was a turn off for her.  I would imagine the same at the hospice? 

    You'll love Emily in Paris, more for the scenery than the plot line.  It's my go to when they tell you to relax you should vision somewhere you feel at peace like a beach on a warm day.  Mine is Paris, anywhere in Paris, in any kind of weather.  Yes, I'm pretty easy to satisfy as long as it's preceded by a first-class plane ride there. :wink:   
  • ToughAsTeal
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    @Bojenka fantastic re CT nothing new! 
    I will look up Tulsa King
  • Strongwoman
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    @ToughAsTeal  You ARE funny!  I will totally know its you.  You will be the new person that everyone wants to meet!
    What movie is that phrase from? I am not joking about 'wanting to meet' everyone is curious and welcoming to whenever anyone new joins.  I did not feel awkward at all it was more my emotions than anything.  Now I don't like missing a week!
      All in your own good time,  I am very glad you called and are getting some support!
  • I am obviously going to have to check out Tulsa King. I am so out of it! Love Yellowstone...Costner & Rip.
  • Strongwoman
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    @Bojenka
      What great news for you!
    Yes, they started that last year about the contrast dye.  Now all you have to do is drink a lot of water before hand and am thankful you are allowed to 'empty' it  and don't have to keep it in like an ultrasound.
  • Strongwoman
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    Ha!  I just changed the channels and General Hospital showed up Season 60 Episode 89!!!
    Think on that ladies!
    See you all next week!
  • Fearless
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    Wow some great ideas and recommendations on movies and series.  We all appear to have fairly similar tastes.  

    @Bojenka congrats on the good scan and the contrast dye issue is not local.  It's everyone in our health system, at least here in Ontario.  I haven't had to drink that cold blah stuff since the fall and they still seem to get a good picture of my innards.  I'm hoping it never comes back into use.  
  • ToughAsTeal
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    @Strongwoman there are a lot of references to origins of cats pyjamas… going back to flappers… I likely twisted it from some Steve Martin movie lol!