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!
Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
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No problem my new friend, @kastoyles
Happy to hear the thought resonated with you and others. I'd have no problem facilitating on my own other than a commitment to be there every week to get the conversation rolling and moderate. Always those times when you just can't engage, so having someone else involved for that and their own perspective would be wonderful. There's no big rush on this so will reach out to the rest of our group next week to see if anyone else would like to be involved and keep @MarilynOCC and @Flowergirl engaged.
Glorious weather here today and looks to be a fine Father's Day weekend. Hope the same at your end.
Fearless0 -
Good afternoon everyone - yes, that is the best part of this site is it is open 24/7
And if you happen to log in and you look to the left to see the smile icons (Who's Online) maybe others are there as well... so if it is a Tuesday you can post here anytime if you can't join us at 7:00 PMCST
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@Flowergirl, that 's great to know. In fact not sure I can be online tonite so glad to know I could post if I had anything to share and follow the conversation of the evening next day to catch up. That said, it seems OCC has taken me up on my suggestion to do another real time meeting during daytime hours, given for us in Ontario and east the current time is not always convenient. I've committed to getting something going but will wait to finalize until @MarilynOCC returns from vacation and she can communicate the optional offering. I am thinking Thursdays around 1pm EST but nothing so far engraved in granite so open to suggestions. For whomever is on line tonight I'd welcome thoughts.
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Fantastic - hello everyone0
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Hi Flowergirl. It looks like it's just you, me and Bluebird. Hope everyone is well. We're enjoying some rain here...much needed after a couple of dry weeks.0
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Well, thought I'd pop in for a few minutes while my husband (my hero) fires up the BBQ. He was late getting home tonight. Sorry to see no one here to chat with but hope that means everyone is doing just great right now and not in need of connecting.
Would still love to gather any thoughts or feedback on implementing one of these chats during daytime hours. And on a more selfish vein, anything any one who has had hernia surgery can share. Seems the incisional hernia from my original surgery is getting larger and causing a few issues so they are recommending I get it dealt with. Not a lover of going under the knife so, while I think they're right, I have huge hesitation to give them the go ahead.0 -
Hello - yes it could be these longer evenings and nicer weather has everyone outside and off devices - which is a good thing once in a while for certain! Gosh, hope you are feeling ok and can get that resolved @Fearless0
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Thanks @Flowergirl. I'll probably post a more detailed ask for any info anyone can share on the subject. On a happier note, I am told my recurrence continues to be well managed with the benefit of Olaparib so feeling celebratory tonight. Hoping you're right and everyone is having a spectacular evening enjoying the weather and probably a gorgeous sunset. Signing off for tonite.....best to you and all,
Fearless1 -
hello @Flowergirl and @Fearless..the chatter does seem quiet tonight..maybe it is the weather keeping people busy. It's been hot here for a couple of days and so a storm was travelling through. I was hoping for more thunder and lightning but without the damage it can generate. We lost a Teal Sister yesterday...it seems to get harder with each sister's passing. It's like a huge dose of reality.
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@fearless..sorry I missed your hernia concerns. I too have an incisional hernia. I was told by my gyne/onc to leave it until it's starting to give me problems..so yours must be pretty serious for them to say you need surgery. I'm sure you will do just fine..I will send you all the positivity your way...0
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@bluebird, so sorry for the loss of your Teal Sister. We've also lost one of our Ovation Circle members, just 8 days ago and, like you say, it gets harder and harder each time.
As for the hernia, it's a weird situation. I have had pain on my right side for the past few weeks. Latest CT showed the hernia a bit larger than before, but also a node just between my colon and liver also slightly larger but so little a change it's almost not worth concern. And nothing definitive shows that might be causing the pain other than those two factors. So a toss up. Is it the hernia or the smaller than a pea sized nodule just in the wrong spot. So my options are to go off Olaparib and into chemo to knock out the nodule but if it was the hernia and 1) chemo wasted and still need surgery and 2) can never go back to the Olaparib. Other option is to keep me on the Olaparib, fix the hernia and hope that was the problem and if not, then off the drug and into chemo. Likely opting for the second option but must say I am more nervous about that surgery than I was when I had my cancer surgery.1 -
@Fearless you are in a pickle...that is always a hard choice... to choose to go off therapy and never have the option to go back on that treatment...why do we have to make those choices...why are those drugs not available for us to take for second, third, fourth round treatments...can you have further discussions with your team or have you discussed this to the nth...0
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@Bluebird, obviously I'd love to have the option of going back on Olaparib as a maintenance drug once chemo was over. But unfortunately, in Ontario, the drug is only approved for that purpose for women who are BRCA positive which I am not. And AstraZeneca can only provide it to me under the terms of the trial I'm on and once off, you can't get back on since acceptance of new patients closed a year ago. In fact, the trial is winding up now. But even in that case I am not anxious to go back to chemo since whatever has recurred is so small still and the Olaparib does still contribute to keeping it reasonably stable.
All of that said, while I don't relish surgery to have the hernia fixed..especially if it doesn't turn out to be the cause of the pain in my side...my husband reminded me last night that it's had a lot of impact on my quality of life anyway. I can't exercise much since sitting up , bending etc. make it pop out more. He finds me slouching a lot now rather than sitting up straight. Things like that that aren't life threatening but an annoyance that having the surgery would fix and since I have the opportunity to have it dealt with now I might as well do it. If the side pain goes away too, then wonderful. We've accomplished what we set out to do. If not, then we'll have to deal with cause more likely being that wee nodule and where we go from there.0 -
Hello all,
Wanted to catch up yesterday during the online chat, but being in Atlantic Canada, 7pm CST, is much too late...so thought I'd check in today.
@Fearless - I understand your dilemma and wish I could weigh in positively one way or another. I'm sure you will eventually make the right decision for you. When I was originally diagnosed, it was because of the scans my physician requested due to what we believed was a hernia on my right side. Then the scans actually showed a large mass on the left side - and everything changed. Following my hysterectomy, which was rough with excessive bleeding, etc., I was surprised and disappointed to find out that they didn't touch the hernia at all. The surgeon said it was small enough to be of no concern. However, I do still feel it and at times it does bother me.0 -
@Tinazzie, hi and sorry to have missed you last night as well. I'm in Ontario and find 8pm EST inconvenient so I can imagine your dilemma trying to join the call. I'd be fast asleep if I was where you are. Hence I will be coordinating something in the day time hours. Stay tuned on that front.
Sorry to hear they didn't address your hernia while they were already in there. That doesn't make a lot of sense to me, but I'm not a surgeon. What I have noticed though is that these hernias that many of us have are largely ignored. I guess in the grand scheme of things they aren't life threatening so not a priority. But it took me a year to get anyone to even admit that the bulge above my belly button was actually a hernia. I've got gals in my support group who have multiple hernias from their surgeries and constantly complaining of significant discomfort yet their doctors won't do the surgery. I've learned a lot over the past few years but every now and then something comes up that just confounds me. But if this pain has created an opportunity to have the hernia addressed then I should take advantage of it. So far no one has come up with any reason for concern about getting surgery done, other than the usual risks associated with any surgery.0 -
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Going through a second round of chemo (carboplatin and calyx this time). Have had four treatments but just developed mouth sores after this last treatment. Have been doing the salt water mouth rinse without much result. Does anyone have any suggestions that might work to ease/get rid of them?0
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Hello again @Shortone - darn, hope you are managing today. Be sure to check in with the cancer nutrition support at your medical centre as they can assist you with the mouth sores. I also tried rubbing olive oil on when I had them once - seemed to sooth - best of luck to you and thanks for sharing your struggle and do let us know if you find something that helps you out!
Good evening @Bluebird @Kathydornan and @love2run0 -
We are having some hot wonderful weather on the prairies again.
And with these longer evenings, everyone seems to be spending their time outside - safely I hope- it is so good to get fresh air. I find the time spent in nature seems to do wonders for my physical and emotional health!
I hope everyone has a great evening and yes, Happy Canada Day tomorrow!0 -
Hi @Flowergirl,..I actually forgot its Teal Tuesday today...I sat listening between the rain and then birds...its encouraging. I hope you and the rest of out Teal sisters have a wonderful Canada day!!0
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Hi @Bluebird. No one had suggested club soda. Had been using salt water with a little peroxide. Just got a prescription today for something called Magic Mouth Wash. Will give it a try. Didn't have any mouth sores last time around but different cocktail this time. If the mouth wash doesn't work, will definitely get some club soda to try. Thanks for the suggestion.
Hoping everyone has a great Canada Day tomorrow.0 -
Hi @Shortone, sorry I wasn't on last night. Totally lost track of the time. Good luck with your new chemo. I would be interested in hearing how you find the Calyx. A close friend may have to be switched to that from Taxel and she's nervous about the new chemo drug. As for your mouth sores, my dentist once told me that salt in water is actually more of an irritant, especially on an open sore. He suggested baking soda and lukewarm water so I've used that for years, even when not going through chemo and it worked just great. We're all different though so hope the Magic Mouth Wash works.0
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Thanks @Fearless. Will give the baking soda a try. My family doctor says Calyx can be tough for some and she is impressed with how well I've been handling it. I'm having more difficulty with staying positive this time around though. Two more treatments to go. Then it will be maintenance treatment. Hoping I get some quality time then. Hard not to get discouraged. The Magic Mouth Wash seems to numb things a little; not sure if it's doing anything to get rid of them. Need to give it time to work I guess.0
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@Shortone, that's great news about the Calyx. My friend had heard some really negative reports about it....although it was the usual, a friend relayed something they heard from another friend who heard something from a friend. She just had her first infusion two days ago and emailed me this morning that it had gone very well. I'll let her know how well you've tolerated it and perhaps what she was hearing was the exception and not the rule. Good luck with the baking soda. I used to get cankers when I was young and it always cleared them up quickly. Then when on chemo and my gums started getting a bit inflamed I gargled twice a day and within a few days my gums were fine and stayed that way. Hope it works for you.1
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Good evening everyone - Welcome to July and how is everyone doing?0
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Hi @flowergirl and all you lovely ladies. How is everyone?0
