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!
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Hello all:) just saying hi and that I think you are all incredible, WE are incredible managing all the STUFF!
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@gaylestorm so sorry things are affecting your diet so much right now. I know what you mean about worrying about possible bowel obstruction though. I too worry about the same every time things seem to be moving slower than I'd like or expect to be normal. So far so good though and never anything that a extra Senekot or two hasn't fixed in due course.1
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It has been copied in this chat site before from another lady ReadersMaven and that is how I learned about it. I believe they did a webinar in the ovarian symposium. The email link to inquire is the following"
wellnesslab@ucalgary.ca
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Thank you @Tinazzie have a good week.
@CountryLiving I did find local HopeSpring Cancer Support, but havnt signed up for exercise just yet…did sign up for “Dial it Down-relaxation and stress management” but it’s not til November (upcoming is full).. my daughter, “really? November?! Ya like you need it now haha”
I don’t type fast enough on my IPad so sorry if I am responding/asking slow!
@gaylestorm… yoghurt in a martini glass might give a mini mental vacation?0 -
Thanks @Tinazzie and yes, just a few new bumps along the way. No one said this journey would be without them. You take care and thanks for dropping in to say hello.
@ToughAsTeal I can't help laughing at your imagery. And yes, you're wise to just accept what is and get on with treating it if there is something to be concerned about. Let's hope that's not the case though.
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There are so many more exercise programs now. There is one through Wellspring, and Hopespring Cancer Support Centre. Many Universities offer programs too but shut down with covid or virtually. Hopefully in the fall they will offer inclass programs. Personally I enjoyed the virutal class as I did not have to leave my house and did it in my basement.0
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New oncologist confirmed tumours are back. No treatment while i am still managing. Maybe more chemo in the fall. Since the tumours came back 6 month after chemo, I considered a difficult patient to treat. What else is new. My friends have told me that for years! lol. Anyways not sure if i'll do the chemo of not.. lots of time to change mind0
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@ToughAsTeal Hopespring offers yoga, tai chi and other programs that are available. It takes volunteers to run the programs so maybe they dont have someone to run that program. I had not even heard of it. I also joined a womans support group from them too and find it helpful.0
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Happy Thursday. @ToughAsTeal I had my CT Scan last Wednesday. Haven't had to the barium yet just the contrast and water. So thankful for that and so sorry you had to go through that.
@Fearless - Vol Mod so happy you have your son home with you. What a wonderful time to get to enjoy each others company. I hope your symptoms start to abate and you feel better.
An update from me:
Unfortunately the results of my scan was not good news. The Caelyx "is not giving me benefit" which are fancy words for "it isn't working". It kept it to marginal progression for a few months but my large tumours have gotten larger and the location of one is preventing me from a trial. I wanted to talk possible surgery and more aggressive treatments. I pushed hard (because we have to be our own advocates) and wanted not just the next standard maintenance (I am platinum resistant going into my third line) in just over a year. My results consult it turns out was with the Physician assistant and it was like she had a check-list which didn't apply to me. I have zero symptoms other than a bit of ascites, I am golfing and other than a very low fibre diet I feel great. So lucky, however my options are limited for sure. In the end, it seemed like she began to understand. The assistant then consulted with the doctor, called me back and I did get a slightly more complex treatment plan and an appointment on August 9th to talk to my doctor in person at PMH about a possible trial and next steps. I have learned from many of you and others I have met on this journey that we are part of our treatment team and our voice counts. If I am going to consider another options I need to do it when I am strong. That's now. So crossing my fingers.
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@gaylestorm what helps you get through “those moments” or “one of those days”?0
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I let my nurse know when I have a physical problem and then I go straight to the acupuncturist and he fixes me up, relieves various pains, reduces hot flashes, resets my nervous system. It's been nice to finally find something / someone who helps me in the moment. It's a win, and I like celebrating wins!
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Not the news you wanted to hear @Taita Im sorry. All the best at your consult at PMH. Hope and faith are powerful and hoping the drs will give you an alternative plan and options.1
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@gaylestorm so sorry to hear you've had the recurrence confirmed now. For me, the first recurrence didn't really come as a surprise I'd already steeled my self for that possibility but when you actually hear the words come of of your medical team it's always somewhat of a shock. Your oncologist is of a similar mindset to mine. She doesn't believe in starting treatment if you're not experiencing any real discomfort or the rate of growth indicates some potential problems to head off. Surprised though yours would say what he did. I've been told if recurrence occurs at six months you're still considered platinum sensitive so treatment options are more. If recurrence within six months then it does reduce the number of avenues they can take since you're deemed platinum resistant or refractory. But that said, I've got a number of gals in my personal survivor group who have been treated as platinum resistant for years now and still haven't exhausted the drugs that are available to try. And, of course, who knows what trials are lurking around the corner. Sometimes it's all a matter of timing.
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@MarlaOMarla acupuncture — not one I had even though of. I am going to put that in my pocket for future.@Taita you are so right about doing it when strong. I recently dusted off the clubs and smacked a large bucket at driving range. Was very therapeutic.1
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@gaylestorm sorry to hear about your recurrence.0
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@CountryLiving I can’t recall how I learned of HopeSpring but am fairly confident that someone told me, and it got pushed down because I wasn’t ready.0
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@MarlaOMarla what a great possibility for relief from pain or discomfort. I"d always make sure my cancer care team know I was considering acupuncture as an option, more to keep the loop and ensure there was no reason I shouldn't (I've been surprised in past) but definitely in my bag of tricks now too.
@Taita I'm so sorry to hear the Caelyx didn't produce the intended result. What's good is that you are feeling well and coming at this from a position of strength.....and there may be a trial option available to consider. Like I said earlier, it's sometimes a matter of timing. Let's hope it offers a solution.
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@gaylestorm that is very hard news take. What kind of Ovarian cancer is it? Like the name of it? I am very sorry.0
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I am signing off and thank you all for sharing and empathy. I get tired sometimes of the “you got this.. oh you are so brave.. My Aunt’s neighbour’s cousin ate asparagus and her cancer disappeared! etc”. I want to hear, “I am sorry you are going through this. Reflect. Live. Do something normal like laundry.”Besides… I don’t think asparagus is on the low fibre diet? Haha
Will be at my appointment next Thursday, so won’t likely be logging in.Get through the week everyone.2 -
Ladies, time to say good bye for another week. I need to find a Tylenol 2 to take the edge off this tooth of mine. Serves me right for deciding I could manage with only one this morning and not take the 2 prescribed.
For those waiting on news, let it all be positive and your worries for nothing. For those dealing with updates that aren't the best case scenarios, remember these are bumps in the road and may be a sharp turn in the wrong the direction, all of which can be corrected with the right intervention, We are all stronger than we think and coning at this at a time where our advocacy is encouraged and not rejected and where there is so much more coming available to treat this disease every day.
Hope to have you all join us again soon and in the meantime reach out in between if there is anything any of us can do to support you, even if only to lend an ear or a shoulder to lean on.
Until next time......
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@gaylestorm So sorry to hear of your recurrence. We are all with you! The first time I was a mess because it meant I was platinum resistant. This time I decided that I was going to allow myself 24 hours to cry and be frustrated and angry and then get back in the saddle as it were. So much of an amazing life yet to live, don't want to miss a moment of it. Stay strong, gather your strength and then as @Fearless - Vol Mod says, keep going because new options may be around the corner and timing is everything. Not to mention there are so many others who are platinum resistant and have been in and out of treatment for years and that gives us hope! Their stories are a powerful reminder of the possibilities.
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I have massages and chiro to help me with my chronic leg pain from the effects of chemo. It does help! Yes my PMH physiatrist (pain mgmt Dr) is aware and supports it. Exercise helps too even tho I dont feel like doing it most times but after I feel much better. Have to push myself to do them.That is why I joined an exercise program for those on the cancer journery.1
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Ladies stay strong and hang in there. Tomorrow is another day and it has to be better!1
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Hi all, I know not 1pm, but I won’t be on today’s session. just got home Juravinski and yes, recurrence.. so starting chemo next Thursday. Busy multi-tasking 2 phones and texts re prescriptions… and at some, I am going to have a shot of whiskey. Keep moving forward!
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@ToughAsTeal always moving forward is the only way! We are right there with you. Whiskey sounds like a good idea!!!0
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THURSDAY AUGUST 8 AND TIME FOR ANOTHER TEAL THURSDAY LIVE ONLINE CHAT.
We'll be missing a couple of our regular members today. Annie1950 is off to the cottage with sporadic internet so won't be able to join in. @ToughAsTeal, as you can see above, got some very disappointing news today and won't be joining in. I will drop her a direct message later but in the interim, can only remind her I'm on my second recurrence, and some of our members have survived even more. I think we an all share in her feelings today though....I'm sure everything from disappointment to anger to fear. But it appears there is already a solid treatment plan in place, such as I got both times, and I can say that getting that going really helped move me forward physically and emotionally. And, if not already in hand, I always recommend ordering up the sequel to By Your Side.....Still By Your Side that helps guide through recurrence. And, of course, we're all here to continue to support...even if only to lend an shoulder to cry on, or an ear to listen. No one is ever alone in this group!
No reminders for today unless I've forgotten anything. I don't believe there are any Teal Teas scheduled for August due to so many people being on vacation...members and the OCC staff who coordinate the zooms. But it will pick up again in September for sure. And, of course, the Walk of Hope (still virtual) is upcoming on September 12 for those who have registered or for those who are still planning to.
So here we are with 1PM EST just coming up. Who's with us today and who'd like to kick us off with a big hello.....0 -
Hello...popping in for a bit as I wait for a call from my physician for a tele appointment. This is a week for appointments! Tomorrow I see the gyne oncologist after 4 months – the appointment was pushed out by a month due to availability. I hope I get some answers about the bloating and feeling like I’m several months pregnant.
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Just read the post from @ToughAsTeal. Yes, that is very disappointing. She has a great can-do attitude. That and her sense of humour, will definitely go a long way!0
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Well gals, it's a quarter of the way into today's chat and it doesn't seem anyone is in a conversational mood today, which is just fine. The summer is always full of things to do, especially on a gorgeous day like it is here today. I'm just waiting on my son to return from a run into the local town and then we'll head over to Amherst Island to do a wee tour with the top down on the car. In the meantime, I'll do some multitasking here at my desk and stay on in case anyone does join us between now and 2pm.0
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You should take advantage of the good weather - and your son's visit @Fearless - Vol Mod
I hope you're doing well and feeling better.0
