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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stage 3 with 3 nodules on bowel.Debulking Surg feb26. Retired 73 old RN from Kenora, Ontario
Am scared and weak, Have to fly from wpg to Toronto for surgery at jeuravinsky cancer center
My husband died suddenly July 2019 so am depressed from that also.
My husband died suddenly July 2019 so am depressed from that also.
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@lindakathleen
I am so very sorry for the challenges you've faced with losing your husband, and now this. But you're not alone in this now that you've found our community. We are 600+ strong, across the country; all having walked in your shoes at different levels of significance; and all committed to sharing and caring for our teal sisters.
I am in Ontario, although in the South East end of the province. But I've heard excellent reports about the Juravinsky cancer center in Hamilton. You'll be in good hands there. But that said, beyond the cancer issue being in hospital during Covid can have added strain on you emotionally. Will there be anyone traveling with you....do you have family or friends there to help support you? If you're on your own do ask the centre for a referral to their Social Work department so there's someone there you can lean on for support. And, of course, when you're up to it...this group is here for you 24/7, along with our live chats on Thursdays at 1pm EST.
I also urge you, if you haven't already, to order the booklet By Your Side from Ovarian Cancer Canada. It is a very useful tool to answer many of your questions about our disease and guide you through your journey. You can request the guide in both hard copy and as a download to your computer. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources And read through the OCC website. There is an enormous cache of information to support you there.
My final advice to you....it will never be acceptable to hear those words...you have ovarian cancer. We all pray that some day this disease will be eradicated. But I can say that never before have there been more advancements in treatment of our disease. So many of us have benefited greatly from traditional treatment, participation in clinical trials and the use newly approved treatments so that we are living longer and better lives. I too am a stage 3C survivor...frontline treatment (surgery and chemo), recurrence 16 months later treated with a clinical trial for two years, and now back in chemo which is working amazingly well. My journey, which I'd prayed to be at least 3 years, is now in its 5th and I'm still going strong.
Please keep us posted on your progress. Reach out any time you have questions, or just want to let off some steam or have a caring shoulder to cry on. You'll go through a vast number of emotions, all quite normal. But you got a great start with a great facility.....in the meantime our thoughts and prayers, along with huge virtual hugs, for a successful surgery and recovery are with you.
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Thank you so much for your support and guidance. I have ordered the.book . I leave tomorrow to fly out Tuesday. What a lonely journey we walk0
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I'll be thinking of you @lindakathleen, so while not there with you, you aren't alone in this journey and you're in good hands at the cancer center in Hamilton. Do try to reach out to their soclal work department while there....there social workers can be a great source of comfort and support and can help you navigate whatever your needs might be while there and your return home.
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Thank you so much. Never thought of the social worker. I am so concerned about the flight home Fly into wpg then another 2 hour drive home as a fresh postoperative.0
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@lindakathleen we'll all be thinking of you and rooting for a successful surgery, uneventful recovery, and smooth trip back home. Do ensure you share your anxiety with your oncology team...and, as mentioned, get a referral to the social work department. Sometimes we survivors can feel the need to be martyrs or show more strength than we really have at certain points in time. If they don't know we're hurting...emotionally or physically...they can't help.
Thoughts and prayers are with you....please let us know how you're doing when you're able.
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Yes I think you are right. The hard part is I have not actually seen a Dr or any team member, only phone calls. I see internal medicine tomorrow as am now in Hamilton for surgery Friday. Will ask to talk and see social work. Thanks gals1
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@lindakathleen thinking about you today and hoping your surgery went well on Friday...and that you're getting some emotional support now that your resources are not just on the phone but there for you face to face. Please let me know if there is anything I or we can do for you as you move into recovery from the surgery and think about your travel home.
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In hospital at present. They also removed appendix and more bowel than expected and surgeon tells me they got it all! My daughter is here with me on this journey. I am so relieved but still so Leary.0
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@lindakathleen
So glad to hear you have your daughter with you. Share those booklets I recommended with her. The more she understands the disease and what you can expect moving forward, the easier it will be for her to support you. I do love to hear those words....got it all! Fantastic news. Don't get ahead of yourself and starting worrying. Just stay focused on healing from your surgery and your next steps.
Big hugs from all of us to you.....
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@lindakathleen just wondering how your trip home went and how you’re doing?0
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left hospital in Hamilton at 9am. Got home at 8 pm. Horrendous day.Still awaiting pathology. Restarting 3 rounds of chemo. Trying to be positive. Hard0
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I never did see social work.0
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@lindakathleen
So glad to hear you're home again but my heart just breaks at the thought of enduring that trip home. I had a four hour drive from hospital to my home after surgery and that was bad enough. But you are home. Your surgery is done. And now time to recover and get ready for the last of treatment. Don't feel bad about feeling down, sad, worried, anxious, angry...hopefully some relief. Let those feelings out but don't let them overwhelm you. It's all perspective....3 rounds of chemo to go? I had six, so my perspective is lucky you. Yours, rightly so, is UGH! Just try to keep your eye on the prize...that day at the end of round 3 when you ring that bell that it's all over and you can move into healing and recovery and bring back some normalcy to your life. We'll all be here to cheer you on and do that happy dance with you gal. Hang in, be patient, you've got this!
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Thank you....... my heart weeps at your motivational words. I need that Linda1
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Just checking in on you @lindakathleen I hope you're feeling stronger each day and just wanted you to know you're in my thoughts.
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well I am back here again I restarted chemo this past April. My nodes were enlarging and ca125 was at 143 I thought I was finished last week after 8 rounds 3 weeks apart , I even rang the bell! but got a call from Drs nurse who say cat scan results and ca125 is 43 indicates I need 3 more treatments. He was going to put me on oral tx of Niraparib but I don’t qualify so hence chemo. I am deflated but trying to be positive Apparently I have a spot on lung and nodule on liver that is insignificant at this time but bares watching . The weakness is so emotionally draining and no hair , well you all know about that.
I hope the next chemo does its job and I can have a life for a while . I know our CA has a “nasty habit” of returning. I need your strength again.0 -
Just checking in to see how you are doing. I’m sorry to hear you’ve had a recurrence. I suppose it’s not unexpected for any of us. Have you finished your additional 3 rounds of chemo? That must have been quite exhausting.
I did most of my school years in Fort Frances so I understand what an ordeal it was for you to travel to Hamilton. I had my surgery there too and complained about the 90 min drive lol. I was relieved that chemo could be done close to home, hope that’s true for you too.Why were you ineligible for Niraparib? Were you tested for HRD or any other somatic or germline mutations? The literature seems to indicate a number of situations that make PARPi beneficial beyond HGSC with BRCA mutations. I’m waiting to start that therapy as soon as the bureaucracy moves along.
Wishing you strength as you recover.0
