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).
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).
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And to add to @CountryLiving suggestion, if you missed last nights session on resilience it will be posted soon. Go here to keep an eye out for it. https://ovariancanada.org/Living-with-Ovarian-Cancer/Webinar-Series I might add, being able to tap into your inner self is so helpful to managing through your journey and you'll find over the course of time that you are far more resilient than you probably give yourself credit for. I do highly recommend this one, and you'll see the menu of other videos of session that are helpful. I found the one on Mindfulness quite therapeutic.
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Way to go @Tinazzie. What wonderful news. As for the other.....over time we all tend experience degeneration of some kind. Take it in stride but good to hear you might have found the cause of your bowel issues. I guess it's stay tuned for more from you as they look into that.
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@Fearless - Vol Mod I will be passing your way again on Sunday/Monday as I am headed to pick up my Mom again and bring her for another visit. I will wave from the 401 lol0
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Yes, @Fearless - Vol Mod, there are lot of up and down phases. it seems like the tide sometimes - a high tide washing over us with difficult or upsetting news and then it feels like the water pulls back and we have a clean slate with good news once again. Until the next high tide. I guess such is our journey. I'm so glad we have each on the shore - whether it's a high tide or low. We are so lucky to have this group. I think someone at last night's session where we had to think of sources of comfort, mentioned the Teal Thursday chats and I couldn't agree more!0
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@MarlaOMarla it just occurred to me you find having a buddy helpful if you don't ascribe to going the social work route. That said, you can meet with a social worker with no obligation to become a client. If what they have to offer doesn't suit your needs then they'll try to help find you the right resource. That said, if a 1:1 buddy would be more up your alley you can call your local Canadian Cancer Society branch. The do run peer to peer matching but don't always have an in inventory of ovarian cancer survivors on their lists. The other option is to let me know where you live...and we can reach out the Regional Director at OCC who covers your city/province to see if she has any suggestions from her resource lists.0
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@Fearless - Vol Mod really? Peer to peer? I didn’t know this was offered! Or..l maybe I did but it was down in the pile of initial information! Today has been a great information day!
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@CountryLiving hopefully soon we'll be in a position that you might just be able to pit stop for a cup of tea on your way. Safe travels gal.
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@Fearless - Vol Mod I will look forward to that and hope that it will be sooner than later0
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Thank you all again for sharing updates and information today! Have a good week🌻🌻🌻0
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Having a fitness assessment as I am joining the U of Waterloo stay fit program for people going through cancer and have finished. Looking forward to it.. know another lady who did it and enjoyed it. I previously did an exercies program through U of Calgary and it was fantastic. Doing a maintenance program now with them. I have to keep moving and exercising to keep the chronic long term effects of chemo at bay.0
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@ToughAsTeal
No we don't offer peer to peer....yet. It is something I'd love us to get to though. The CCS do have a program though. They keep a roster of volunteers who are willing to take on one and sometimes multiple survivors as a "buddy". These are usually women in the same area as the person looking for a buddy and always commonality of disease. The problem is that compared to other cancers our populations is lower so they don't always have OVC volunteers on there rosters.
Here on our site it seems more that over time some of our members do form a stronger bond that they take off line as well as share on this sight. It would be nice though to formalize something but administering it could be a fulltime job. Not sure I have capacity myself but something on my list to discuss with Tracy for 2022.0 -
@Fearless - Vol Mod - thanks for the reminder and link to the past webinars. I will check out the one on mindfulness, as I too am quite interested in the subject.
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Good bye ladies and hope to hear from you next week.0
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Have a good week everyone!0
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Time for me to exit too ladies. Thanks for all coming together today and especially with all your good news to share. We need these happy days, don't we. Only wish every day could be a happy day for everyone of us.
Have a great week everyone and look forward to checking in again next Thursday.
Big hugs to all.....
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It's Thursday, September 30 and not just another Teal Thursday but....
the first National Day for Truth and Reconciliation, now an annual commemoration honouring the more than 150,000 First Nations, Métis and Inuit children forced to attend church-run, government -funded schools between the 1970's and 1997, many of whom died while attending those schools, and the survivors, families and communities still affected by the legacy of the residential school system.
I hope you'll all join me, in your own way, in recognizing the solemnity of this occasion by both reflecting on this history and participating in events in your community or provided virtually.
So without further ado ladies, welcome today. To any one new, glad to have you with us. Feel free to participate or just follow the conversation if you're 'trying us out". But do try to say "hello", just ensure you've signed into OVdialogue so that you are able to participate if you choose to. Our topics vary from week to week and sometimes minute to minute...everything from our treatment status, to what's going on in world affairs, to the weather.
So to everyone here today, what's on your mind? What would you like to share with us all?0 -
@Fearless - Vol Mod Good afternoon and I hope all is well with you and yours:)0
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Hey @Annie1950 Glad you're back from Florida, safe and sound I hope. How was the junket. Did you get some "me time" on top of all the errands and organizing you were doing? How are you feeling?
I"m good...for now. Blood work tomorrow and scan on Monday so will have results on the 12th. That will tell me if I will continue my treatment hiatus. Otherwise, although recovery has been slow this time, I am feeling a bit better each day. Worst is those awful blood thinner injections the past three months. My belly looks like an abstract a painting as the bruising changes colour. Hoping I'll get switched to orals next week as well.0 -
@Fearless - Vol Mod I had an amazing time in Florida! I did a lot of organizing and shopping for my buddy and gladly so. When I couldn't have surgery here last year due to the Covid situation she stepped up to the plate and offered to drive me to the Cleveland Clinic, wait until my hospitalization was complete, drive me back and quarantine for two weeks. Friends like that are so precious.
They have the most amazing thrift stores and it gave me a sense of accomplishment finding suitable bits and pieces for her new home.
Most people are wearing masks and practicing physical distancing even though it's not mandated. Great to see.1 -
Happy Thursday. Just wanted to update you on my clinical trial. So far so good. No side effects after 3 rounds except elevated blood pressure. Started Norvasc yesterday. I feel really good! Had a port put in a week ago Monday. Although the recovery was a bit tough, so much better for treatment and such. Was told Monday that my routine mammogram and subsequent biopsy showed breast cancer unrelated to my Ovarian. I am non Bracca. After a rough few days emotionally I met with a breast oncologist today who has said it is very small, hormonal caused and that usually a pill takes care of it. It may shrink on its own as well now that I have no ovaries. I will have an appointment with a medical oncologist to determine plan. We will see. A few days ago my trial docs were considering taking me out of the trial because of it but they decided to continue as planned and have this appointment for clarification. So needless to say I am very relieved! On the train home from my appointment as we speak!1
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Hello everyone. CT later today. Picc will be removed in the morning...port going in. Had reaction to carbo at chemo Frid. Current plan will be desensitizing protocol for both paclitaxel and carbo at next chemo. If that doesnt go well, then tentative plan is a 24hr overnight chemo. Will be reviewing scan results wi Dr next week. Some tinglings in hands today making ipad a bit clunky to handy. Looking forward to lots of baking with daughter when home for Thanksgiving1
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@Fearless - Vol Mod Glad you are feeling better every day. Sending all good vibes
for a good scan and a longer break!!0 -
good morning Ladies. For sure a day to reflect and honour.
What a whirl win week
My 2nd pre chemo appointment with oncologist, she thought that despite my Ca125 going from 226 to 2200 ( maybe had not reacted to first chemo or was byproduct of cancer destruction) that the chemo was working. I had the second chemo with no side effects and decreased my dexymethasone as instructed. unfortunately my tolerance for food also decreased and bloating and pain increased. Now waiting to hear from doctor on what needs to be done. more dexamethasone.
Did anyone have similar problems with ca 125 levels and Caexlyn
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Hello! This is Pauline. My first time participating in this chat. Not sure if I have this figured out. What an amazing friend you have, @Annie1950. That kind of generosity gives me hope!
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@Annie1950
I have friend who has a lovely townhouse in one of those gated communities in Bonita Springs. She and I and another friend used to do a yearly two weeks down there and it was 'shop til you drop' with all the discount stores. Even Target was classier than most that we have here. Nice to hear the average Joe down there is practicing some common sense about Covid protection, given their surge in the last round of it. But do hear it's levelling off there now.2 -
@Fearless - Vol Mod Sorry to hear your recovery is lagging but hopefully all will be well when you get your results on the 12th. I had the blood thinning injections as well and it wasn't a pretty sight but thankfully they got the job done.1
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@Taita that is great to hear re trial!@Fearless - Vol Mod scan today with eh drink i start at 4pm. Dont even think putting it in a wine glass will fool my way through it. But, i will get it done. More anxious about them finding spot for IV for contrast dye. Only to get another IV tomorrow morning for the port procedure. We will both maybe be a bit abstract1
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Wow @Taita it never rains but pours for us sometimes. So glad to hear the breast issue is not considered life threatening and easily treated. I can only imagine how you felt when you got the news it was there. Another hill on that roller coaster we all ride, eh? Also so glad the trial the underway and they've agreed that the breast situation is not a deal breaker. But wow. I have my annual mammogram in a few weeks. Not concerned...I look at as pretty routine but a better safe and then sorry exercise.
@ToughAsTeal good luck with the CT today and so glad you've got the the port going in tomorrow. You'll find it such a relief from the PICC line. And the procedure is really fairly quick. I had no discomfort when they did mine in December. Good luck with the desensitizing. I went through that when I had that unexpected reaction to Carboplatin and they switched me to Cisplatin. 5 Dex a day for 5 days beforehand, ondraseton and something else plus Benadryl at night. I was really loaded on steroids but it worked. No reactions after that. So hope the same for you.
@PaulineJ so very glad you've joined us. Yes the platform can be a bit cumbersome until you get used to how the conversations flow. Something we're looking into as a systems improvement next year. But yes. Annie is lucky to have such great friends. You'll find over time, people you hadn't even expected to step forward in support in various ways. Unfortunately sometimes there are those you did expect to be there just not. Usually out of discomfort. It sure did help me refine my Facebook 'Friends" list though LOL0 -
@gaylestorm I haven't had Caelyx....yet. But have had my CA 125 go up when my CT was showing my tumors shrinking a couple of times now. Remember, the CA is not very reliable and there are other factors that can cause it to rise..and sometimes no explanation at all. Rely on the scans. I always figure if my oncologist isn't panicking, then I won't either. But so glad to hear the chemo is having the desired affect. The other....yah, probably step up your Dex. It seems to be their solution to everything...but it does usually work.0
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@gaylestorm those Ca125 tests are not something my oncologist here in Vancouver has mentioned. Not sure why. From what I have read those numbers can be misleading, and cause unnecessary worry. But I guess that could be something we discuss later.I have had only two of six chemotherapy treatments and was high as a kite during the first few days in round one with the Dexamethasone. I had major withdrawal from the dexa too. The second time around I was instructed to taper, and that helped.
Monday I had a laparoscopic assisted vaginal hysterectomy, and am now dealing with a swollen belly and sore tummy, but surgeon is quite happy with my recovery so far. My one worry is that they suggested I delay the next chemotherapy treatment, which was supposed to be next week. The chemotherapy is working, so am rather worried about backing off. Does anyone have any experience with this issue of delaying treatment to heal after surgery? Aside from having stage four ovarian cancer I am healthy.0
