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).

TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)

Options
1175176178180181207

Comments

  • @Strongwoman
    Looks like you were really pampered last weekend. Good for you…you deserve it!! The pics are so pretty. 
    Geez. Sorry to hear you’re going thru this. Hope they find cause soon. Have they done any imaging to have a look? 
    Me…I just want to complain about lack of sleep, wake up too early. And I think chemo brain is back. Don’t know why, but wasn’t expecting it to hit me so soon (3 treatments)!! So now my focus is off and I can’t concentrate on things I need to get done - result of lack of sleep plus chemo brain!! Trying to adjust my expectations so I can get a bit done without overtaxing my brain. 🤣🤣
    I have my monthly follow up with my oncologist on Monday…will get CA125 done and see how it’s going. My bloodwork has been okay for treatment purposes…guess lower dose helps with that issue. 
  • @Taita
    Wow…nice decrease!!! Are you experiencing any side effects? Manageable?
    Belated thanks for all the work you did for OC and for letting us know about the new research monies.
  • Taita
    Options
    @GloHo
    not many side effects this time and quite manageable. Feeling quite Iucky this go around. Research is the only way we will improve outcomes and eventually I find. It a test and a cure for Ovarian cancers. 🤞
  • @Eileen
    Glad you’re home and healed enough to get back on your chemo. Also glad to hear your GF and sister are going to be with you. So nice to have someone to lean on and support you!!
  • Strongwoman
    Options
    @Taita OMG that is amazing work you have done. Can I ask and if you ate willing to share, why did you chose Ovarian Cancer specifically when you were a Member of Parliament?  To then know you had it must have been quite the feelings. Thank you for all the work you have done. Quite the accomplishments to be proud of.
      What plans do you have for this Christmas?  Your posts sound like you are determined to make it extra special.  How wonderful for you and your family!
    The trending down of your CA125 must seem surreal in some ways.  Glad to see treatments is working.  Your ascites improvement must feel good as well.
     Yes, I am resting and doing what I am supposed to. Thank you
      
  • @Taita
    So glad to hear you are tolerating Topotecan so well. Gives me some hope when I’m at that point - I was kind of dreading that one - a necessary evil. You have been getting blood tests before each treatment? And all has been good?
  • @Strongwoman I'm so sorry you aren't feeling well right now but OMG that spa looks amazing!  I'm glad you had that lovely weekend before you started feeling poorly.
    @Taita it makes me sad to hear you say this will probably be your last Christmas.  As someone who is just starting the OVC journey thank you for your efforts as an MP.  Sending you a grateful hug.
    @Eileen glad to hear you are home from hospital and they were able to get those clips in place.  Whatever your kids motives just accept that they are trying to be more supportive now.  I'm glad you have your friend staying with you and your sister coming for a visit!
    After having such a terrible time last week with nausea, vomiting and diarrhea I am actually feeling pretty good right now.  The great grandkids came and decorated my tree.  It's a sight to behold, lol!  They are so precious. 
  • Strongwoman
    Options
    @Eileen Thank you for updating us.  Glad to hear both your gf and sister are coming to see/stay with you.  It is difficult to look at the kids "change or heart/focus" and more importantly to embrace it for what it is and let them in and do what they need to do. They may not have seen it before and whatever "woke them up" perhaps look at it as a good thing that it has occurred now where memories/times have you with them and not a time when you are gone from this earth. A time where their hearts may be filled with many "what ifs" and perhaps regrets.  May you enjoy their company for a long time and communication continue to flow between you all. 💕
      Here's positivity that the new regime will be better for you all around and that you feel good as well.  
  • Taita
    Options
    @Strongwoman
    Interesting story.  I was a Parliamentary Secretary to the Minister of Natural Resources for three years and I wanted to step back and spend more time in my riding because I was travelling all the time. About a year  before I stepped back, my daughter’s best friend Rhianna called me and said she was coming to Ottawa for an advocacy day with OCC  and wanted to talk to me about how I could help. Rhianna was diagnosed accidentally in her early 20’s and is now 44 years old!! ❤️. Long story short I jumped on board and when I stepped back I asked the PM to be on the finance committee to help make this ask a reality. He said yes and the rest is history. Lots of support from colleagues on all sides of the aisle. Lots of advocacy to get included in the budget (there are SO many asks) but we did it!! Four months after the October 2019 election I was diagnosed with OC. A year later I was diagnosed with breast cancer (not related). I have been palliative for 3 years now. We all do our part in one way or another and this was my contribution. ❤️. I am very accepting of my situation but will never go down without a fight!!! 
  • Taita
    Options

    @GloHo yes, blood tests every three weeks. Kidneys are not optimal but okay. I do get a Lapelga shot 24 hours after day five of treatment to keep my WBC up. Have been doing it for about 18 months. Works swell so far! 

  • Strongwoman
    Options
    @Taita Thank you for telling the rest of that part of your life. So interesting how it begins and ends eh?  I bet there were a lot of "asks" to get the funding.  A lot of hard work too.  Thank you on behalf of all of us that have benefited from your efforts and hard work!
      Yes, I have gathered from your posts that you are accepting of your situation as I am with mine. Initially I recall it not being that way and tons of emotions. I then recall it settling and the planning began and still carries me through each and every day. 
      Amazing work you have done and your Christmas will be as spectacular as you imagine/want it to be!💕💕
  • Strongwoman
    Options
    @JoanEG Thank you!  It was beautiful and thankful to have had that time with my gf.  Funny that was the first time we had ever been away overnight together....shows how life/family can complicate that at times.  
      Your tree must look beautiful with those little helpers helping.  Were you able to watch them decorate?  If so, I bet it put a smile on your face no matter how you may have been feeling. Glad you are feeling better now and that you are more aware of how/what for the after meds for chemo are all about. Basically preventative. 😊
      Well take care of you and enjoy the great and grandchildren.
  • Strongwoman
    Options
    @GloHo Hello!  Want to make sure I read your post correctly.  Are you having less some effects this time or were you responding to @Taita?  
      How are you doing these days?  How have you been filling your days?
  • Want to share my Xmas tree fun! 360* rotation plus some fanfare at start up. Hope video works. 🤣🤣 

    https://www.dropbox.com/scl/fi/vxowhos43na4bqye9v5zg/IMG_1528.mov?rlkey=nqudbrcmhy04115u3zlyla5r5&dl=0

  • Strongwoman
    Options
    @GloHo ❤️ it!  Love the wall sconces too!
    Thanks for sharing.
  • Hi Ladies 

    I hope everyone's day is going okay and if not I hope it gets better. I myself needed to get out of the house so will probably do some Christmas shopping. @Taita I was very happy to read about your ca125 dropping like that!!! As well as the ascites being better, I can relate, I had it when I was diagnosed and hated it. I pray the chemo dries it up!. Thank you for fighting for more money for OC research hopefully one day it will get the same acknowledgement as more common types.

    @Strongwoman I am sorry you are not feeling the best, but glad you don't have any nausea or vomiting, hopefully your team can figure things out quickly. Rest up. @Eileen you have truly been through soo much the past month or so, I am happy that your friend will be moving in with you. It is no fun being alone, hopefully it will help your spirits. My fingers are crossed that the one dose of radiation will help and good luck restarting chemo.
    @GloHo not being able to sleep is torture sometimes. I can't remember if you mentioned, but maybe there is something you can take to help you sleep? Natural or prescribed?
  • @Strongwoman
    I’m feeling ok. Some fatigue and now chemo brain. Also tired from lack of sleep. So…just out of sorts. 😵‍💫
  • @melissa
    I have trouble staying asleep. 6 hours used to be my norm, right now I’ve been getting about 5. I haven’t tried anything yet…maybe I’ll try a night time tea. (I was on a clinical trial and didn’t want to introduce anything new to my diet.) I am tired when I go to bed and always think that I’ll get enough sleep. Not sure if time change is playing around with my internal time clock…usually doesn’t take this long to adjust. 
  • Strongwoman
    Options
    @GloHo Sleep!  Bet we could all talk hours upon hours about it!   Makes sense not wanting to introduce something while on a trial or trying to get one.  Herbal teas have worked for me before then they didn't.  Saying that I still have them from tome to time esp if I feel "wound up" and it does help. I have tried and still use on occasion the melatonin. My palliative doc said to mix the melatonin (open the capsule) into applesauce (which I warm first of course!). Meditation I have tried as well. Baths. CBD.  Hmmm so many things. I take Zoplicone to be able to sleep now.  Whatever it is or whatever combo is the right one for you. The brain fog could be partially from the lack of sleep as well. I digress.  I sincerely hope you find the right combo for you and your brain and body relax and recoup.
    🛌💤😴
  • @GloHo your tree looks lovely!  My granddaughter told me my house looked like elves had shown up and puked Christmas all over the living room.  😆
  • @Taita thank you for sharing how you became an advocate for OC!  
  • @Strongwoman I sat back and watched the great grands decorate the tree.  They actually brought me the tree (it’s awful) that the found for free on marketplace because I decided I didn’t want the fuss of a real tree this year!  Here are a couple of photos.

  • @JoanEG
    🤣🤣🤣 
    People with OCD do not handle my Xmas “decorating” well. The same elf must have visited my house too. 
  • Strongwoman
    Options
    Adorbs @JoanEG So cute, thoughtful, heart-felt that this is how they wanted to show their love for you. It looks great! Seeing their joy is a gift in and of itself! <3
  • @JoanEG I see you have 2 furry friends keeping you company. Very jealous my hubby is allergic but I keep telling him we will find a hypo allergenic one. He's not giving in yet 
  • Taita
    Options
    @JoanEG
    Love it!  I sat back and watched too but I did just have to add a little extra “fluffing” at the insistence of my youngest granddaughter. I will try and post the pic of my oldest grandson (25 years old and 6’2”) and my youngest granddaughter (3 years old) “fluffing”. It was adorable. 
  • Taita
    Options
    Quite the pair! 
  • Taita
    Options

  • @melissa I have allergies also but my dogs are shih tzus and don’t shed so I’m ok.  In 2017 after my husband passed away my granddaughter came to live with me to attend university.  She was from a small town in Saskatchewan, her parents split so it just made sense for her to come here.  She brought the dogs.  7 years later she has long since graduated, moved in with her boyfriend and have custody of the dogs.  They are a comfort and keep me moving everyday.
  • Strongwoman
    Options
    @Taita Thanks for sharing! What I'd amazing to me is to say "oldest" and "youngest" grandchildren.  So wonderful. They look like they were enjoying their time decorating too.  A little "fluffing" is so minor...😉