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).

New Here

Hi, just found this site and wanted to introduce myself.  Diagnosed Feb 2020 with Stage 4 non-operable ovarian cancer.  CA 125 was 2200, 6 rounds of chemo started March 2020 and now CA125 at 204.  Tumor has shrunk and omentem caking less thick?  Im not too sure of all the new terminology etc.  I have never felt pain, found the cancer after ultra sound and CT after I was bloating.  Was drained twice before first chemo...8L each time.  Felt so much better!  I am 2 months post chemo now, never had any reactions to treatment. carbo.taxol except for the numb feet and hands.  Had to reduce my amounts of chemo to about 55% strong.  Toes are back, fingers are back to about 75%.  I am now feeling cramps.  Like menstrual, I have NOT yet started menopause, but haven't had a period in 9 months.  no not pregnant lol.   Im scared, im too young to retire. but am now on permanent disability.  I don't know what to do with myself.. with covid and this ...its ALOT.  Anyway, thats all I can think of for now.  I look forward to chatting and reading.  Im a bit lost out here....

Comments

  • I guess I should mention im 46.

  • @tdubs17 Welcome. So glad you found us.  
    I'm so sorry to hear of your diagnosis.  We've all been there at some point and it's truly a struggle to keep going sometimes.  We're here for you....questions, just feel like venting, just a "virtual" hug from time to time....that's what this group is all about.   
    And please join us on our live chats...Tuesday evenings at 7pm CT, and Thursdays at 1pm EST. We've love to get to know you better and what we might do to help.
    I'm off for surgery tomorrow.   Diagnosed high grade serous epithelial 3C in early 2017.  Right to surgery and then 6 cycles of chemo.  NED (no evident disease) after that for a while but then recurred end of 2018. Since then on a clinical trial that will not cure me but is stabilizing the growth successfully.  Side effects from the original chemo and now the drug I take ebb and flow. I'm learning to live with them and my new normal.  Tomorrow is a fix up...they'll laser what they can get at, clean up some old scar tissue and fix a hernia that's been giving me some discomfort. I call it a tune up! 
    You might want to hook up with @jiselle16 and @nadiaC They were trying to get a group together of younger survivors.  This disease is no longer the old lady disease it used to be and it's saddens me to see how many younger women is touches now.  I'm 69...ouch, just realized I'll be 70 in December.  

    Hope to hear more from you once I'm back in action. In the meantime, stay well, stay safe and be strong.  <3   
  • welcome @tdubs17 - though none of us really want to be a part of this group, you've come to the right place where you will find friendship, support and suggestions while coping with ovarian cancer and as @fearless said, your new normal.  I was diagnosed shortly after I turned 61. I had a hysterectomy and six rounds of chemo with carboplatin and paclitaxol. I just passed my fourth anniversary with NED. Am thankful for my medical team, my husband and the support of friends and those I have met at OVdialogue.  Welcome!
  • Hi @tdubs17...you have found the right group...sorry to hear of your diagnosis...hope your treatment continues to works well for you...we all have different stories to share.. we all go through it a little differently..but all very supportive and strong.  So welcome!!
  • CountryLiving
    CountryLiving Peer Support Vol
    Hello @tdubs17. Yes this is a great group of women. They all have their journies but as you will find out they are all supportive and understanding. Keep in touch with your doctor and inform him of the changes. Good luck and look forward to seeing you here again.
  • Jackie
    Jackie Peer Support Vol
    Hello @tdubs17. You have come to the right place, you'll find plenty of information here plus the women in our group are empathetic and understanding because they know what it's like to be diagnosed with this terrible disease. I was diagnosed with both uterine and ovarian cancer in November 2011. I was fortunate that they were able to treat my cancer with surgery and chemotherapy. After about one year of gruelling treatments and spending most of my time at the cancer centre or in the hospital I was NED (no evidence of disease). I'm currently cancer-free, however I'm still being carefully monitored for any signs of recurrence.
  • hello @tdubs17 - welcome to the site and yes, sorry to hear you are dealing with this disease. As the ladies have mentioned, we hope you will find much support and information here. Do you have access to an in person support group through your cancer centre as well?

    Also, if you have not received the free support guide from OCC, you can order it here: 
    https://ovariancanada.org/living-with-ovarian-cancer/newly-diagnosed/by-your-side
  • HI. thanks for the kind welcome.  No I haven't found a in person support group since this Covid.  Hence why I found you guys.   Im in Edmonton.
  • @tdubs17 Try the info in this link. It looks like there is live support in Edmonton but due to covid it's been replaced by a teleconference.  I do recommend if there is something out there being able to connect with other survivors in your local community is really helpful. https://ovariancanada.org/Living-with-Ovarian-Cancer/Find-Local-Support-Groups
  • Hi @tdubs17...there is an ovarian cancer group in edmonton..we have been doing zoom sessions monthly because of COVID..otherwise we had in person monthly meetings at Wellspring....wellspring as well I think has virtual activities...check it out...if you need a contact in edmonton for the support group let me know...
  • I didn't have an ovarian cancer support group in my area, however, I did join a support group at our local hospice, which
    helped tremendously. As others have said, the in person groups have been cancelled because of COVID. Another reason why OV Dialogue is important for us to keep in contact with each other. We're lucky to have this forum! Thanks OCC!