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!
New diagnosis
Hi all, I just got diagnosed but don’t know what stage. My dr said I would need s hysterectomy and more but I don’t know what he meant. I have an appointment Monday at 9:15 am at the Tom Baker cancer centre. I am so scared! Thank you for let me be part of this group. I am at a loss of what to do with myself. I second guess everything I feel. My husband is on the road so I’m depending on my 18 and 20 yr old sons. I also have my 84 yr old dad living with us whom is not going to take this well. I just need support and advice from ladies who are going through this ..
0
Comments
-
@ncfarrell I am so sorry to hear of your diagnosis. We've all been where you are and know how terrible it all sounds. I was where you are back in 2017. I think "in shock" was the best description. But so glad you found our community here. You'll find everyone very helpful and supportive.
A few thoughts to start with that might help.
Your appointment at the Tom Baker Center will likely be with a gynecological oncologist who is an expert in our disease. I can remember my GP calling me to tell me my scan had shown a tumor the size of a large grapefruit and fluid around my lungs and then implied I should get my ducks in order. You can't imagine how relieved we were when we sat down with my oncologist and his first words were...I've seen your scans. I have Plan A and Plan B. Either way, I'm pretty confident I'll have you cancer free in the next six months. My cancer turned out to be high grade serous stage 3 C...and guess what...he kept his promise. If you want to know more about my own story, just click on my picture.
Now to help you prepare for that meeting and your journey, there is a booklet that Ovarian Cancer Canada provides in hard, and now, soft copy called By Your Side. It's enormously helpful in guiding you through the treatment phase. And spend some time perusing the Ovarian Canada Cancer website. There is a huge amount of information on our disease that you...and your family will find very helpful.
To order By Your Side go to: https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
To search the Ovarian Cancer Canada website go to: https://ovariancanada.org/
The best I can say to you right now, is don't be afraid. We are so lucky that over the past few years there have been significant advancements in treatments and programs that we are living longer and better lives.
I'm also flagging @albertan, one of our newer members who I believe is in Calgary too. She is fairly newly diagnosed and may have also connected with some others out your way. As an FYI, if you ever want to flag a member or connect directly wtih them just type the @ sign and then with no space the first few letters of their screen name and the full name will pop up. For for me you'd input @Fearless or you can private message them. I'm also flagging @Bluebird. Although she's in Edmonton I believe she's very aware of the Alberta system and enormously helpful.
I hope this gives you some peace of mind over the weekend. Help is coming in the form of your appointment on Monday, and you're not walking this path alone...we're all here for you. Please let us know how your meeting goes and what we can do to support you...even if it's only to listen. And please think about joining our live chat on Thursdays - 1pm EST (11am your time). You need only sign in and click that Discussion title Teal Thursdays - Live online daytime chat. It's usually the first or second Discussion in the list. Love to have you join in.
0 -
Thank you! My mind has gone straight to the worst case sinario because of how my gp worded things. When I told him I was standing there shaking ( I was in the change room at the gym) he said that wasn’t what he intended for me to do because of his call 🙄. I’m hoping the fact that I still have an appetite, energy, still going to the gym and lifting weights which my trainer has consistently increased and only take pain killers maybe every couple of days are positives. Thank you for reaching out!❤️0
-
@ncfarrell you'll hear from more of us over the next while. As I said, we've all walked in your shoes unfortunately. Funny how the mind always goes to the worst case.....especially when there is lots of best case out there. I am almost four years in, but I have friends out here in SE Ontario who at 20 and 30 years survivors. So don't ever lose hope, and don't peg your expectations on anyone else's experience. We are all impacted differently. The key to success is open and honest and timely communication with your cancer care team.....don't ever hold back. The more they know about how you're managing the better they can support you.
1 -
Hi @ncfarrell..sorry to hear that you have cancer....but glad you found us...I'm in Edmonton..it may not be exactly the same but itll be close. Your first appointment you will meet your team, gyne/oncologist, nurse practitioner if they have one...you should get a definitive diagnosis unless they still have tests to do..and a plan...surgery, chemotherapy...the most important thing always let your team know how you are feeling, now, with chemo...during chemo...and ask questions and what supports like spiritual/psychosocial dept, occupational therapy, physical therapy., dietitian, there are for you to access...they might also have a class you attend before you start your treatments about chemo, radiation, hormone therapy etc. There is a support group trialing for western canada online for bc,ab,Yukon,NT., And tracy Kolwich is our western region director. .there are other support such as the Wellspring centre for adult cancer patients. They might be closed for in person classes but ours here have online activities..our centre has music, art therapy, yoga, meditation, nutrition, info lectures etc..check it out. I guess I'm saying is your not alone..we've all went thru or are going thru this and well go thru this with you. It's safe here.
2 -
Hi @ncfarrell .Sorry I didn't see this post before and sorry to hear about your diagnosis.I am in Calgary so feel free to send me a private message .I had a definite diagnosis after surgery (in pathological report).I second @Bluebird...@bluebird do you have contact info for the online support group you mentioned.One thing I want to mention is here in Calgary it is very much 'team' approach in my experience-I have seen a different doc/nurse at each appt.That was a shock to me....0
-
@ncfarrell - sorry to hear about your diagnosis, but you have definitely come to the right place for support. I was diagnosed with Stage 1C after my hysterectomy and like you, received the news over the phone a half hour before my surgeon left for two weeks in Hawaii. I had no other information until I met with the oncologist two weeks later. I hope you are getting answers from your team and remember to come back here to share, ask questions, or rant. You're stronger than you think!
1 -
Hello ncFarrell
Welcome to our support group.
I was diagnosed in December of 2019 so I am fairly new to this disease. I have learned that it is as much an ailment of the mind as it is of the body. For me, I have worked as hard at maintaining a healthy mindset over this past year, as I did at healing from the chemo treatments. I found it very important to find strategies that prevented me from going to the worst case scenario. One of the best tools for that is reaching out to others who have gone before you and learning of the successes in their journey. Thanks to advances in treatments and medications over the past ten years, there are treatments now available that extend survival. Ovarian cancer is now referred to as a chronic disease, one to watch and treat usually more than once, but one that women are now living with, not dying from. If you are doing any research online about ovc, disregard anything older than 2017, it is too dated to be relevant, recent advances have changed everything for the better!
I was very afraid of chemo at the beginning, but now that I am through it, I can say that if was not so bad, I had fatigue for about 5 days following each treatment, a couple of annoying rashes, but no nausea. If you can try to focus on what will go right rather than on what can go wrong, it will help you to maintain a healthy mental focus.3 -
Thank you Beam blossom! This is inspiring and exceptionally helpful. I was diagnosed in October, so I'm still getting my head around it
0
