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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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LOL no sooner do I think I'm alone today and someone does join in. Hi @Tinazzie....you sound in great spirits despite waiting on appointments. Hopefully you'll have some answers (and they'll all be good) before you head this way to visit your children. If I recall, sometime this month?
And totally agree ToughAsTeal has a great "can do" attitude. Love her suggestion about knocking back a shot of whiskey. I've sure done my share of those over the past five years LOL.
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And @Tinazzie thanks for asking about me. Had my check in on Tuesday and nothing surprising. The MRI on my lower back showed nothing more than the usual deterioration that aging causes. Now they'll do one on my hip to see if there is anything there that might be causing the weakness in my right leg which, by the way, is improving. Shots for the blood thinner seem to be working. Interesting that each time a pro injected me I ended up with a big bruise but since I've taken over the task I haven't had one. My oncologist says I must have the magical "touch" LOL. And the unusual rise in my CA125 is likely just my body level setting now that I'm off chemo and it's pretty well out of my system so nothing to be concerned about...for now. CT upcoming in about 6 weeks so we'll see how I'm doing then but in the meantime feeling much better Even the tooth thing is less painful but do suspect I'm going to need a root canal...ouch. Otherwise just enjoying having my son home...although my waistline is already showing it between cooking all his favs and our forays out to local restaurants. Oh well I can diet when he leaves LOL.
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Haha..I lied. It's 1:50 and my son has just returned home so , since it looks like Tinazzie has hooked up with her teleconference and has exited the chat and no one else has joined in, I think I'll get head of my promise and exit now myself in favour of a lovely drive on the island.
Tinazzie I do hope all goes well with your call and other follow up. For others, it does seem to be a summer of recurrences and I do hope everyone in that category has success with their treatment plans and gets to enjoy some of this lovely summer. I can't say how grateful I am right now to have a chemo holiday for awhile, although I know it won't last forever. But I am also so grateful that with each recurrence there has been something in my oncologist's little bag of tricks to manage it and I'm counting on that to continue what with so much new research and new treatments coming on line these days. When I had my first recurrence after a year and half following first-line treatment I was told my odds of being here after about three years weren't great. Well gals, I'm at five years now and still going strong.
Hope to see more of you next week ...in the meantime wishing all nothing but good news and sunny skies.
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Thursday August 12 and we're baaaack....with another live chat; so welcome.
Here we are again with another month slipping by us. I find it interesting being one with recurrent OVC. I'm practical and pragmatic enough to accept that each day I have is on borrowed time and happy to see I've borrowed almost five years of it so far and my credit still has no limit. But I do find it frustrating to see the days passing by so fast now. Each one, for those of us in my situation particularly, is so precious. And I can't help sometimes looking back at the end of another day and wondering if I made it meaningful or productive in some way; as if that's necessary. Being able to just live in the moment and go with the flow, even if that means a day just vegetating because that's really all I want to do, is so foreign to me that that's really a huge adjustment. But I'm getting better at it, I think. In fact, I'm probably reaching professional level when it comes to procrastination LOL.
If anyone is interested in learning more about the virtual Ovarian Cancer Canada Walk of Hope on September 12 there is a new Speaker Series session online Wednesday, August 18 at 7:00 p.m. ET where you can meet Teal Sisters living with ovarian cancer as well as some top fundraisers. Be inspired by their stories and find out how your support makes a difference. This free event is hosted on Zoom and preregistration is required. Sign up today at https://ovariancanada.org/Events/Find-Local-Events
No other events planned that I'm aware of. Teal Teas are still on hiatus but, I understand, will get back on track in September.
So.....let's get started. Who is with us today? What would you like to share? Or just hello? ............0 -
Happy Thursday everyone!0
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Isnt hard not to beat yourself up about just resting. After so many years of being productive, resting and letting other help is one of the hardest things Ive done. I have to keep telling myself, It's okay to just be. I'm having trouble eating. I not able to eat more that a couple of bites of soft food. Its okay when i'm not hungry, but sometime i'm hungry, thats when its hard. I have a call into dr to see if having a pallative dr would have suggestions.0
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@Taita @gaylestorm Welcome and great to have you both here today.
Taita, any new news on your treatment plan?
Gaylestorm, I'm sorry to hear about the eating issue. It sounds like not appetite but some issue with pain? Whatever, do avail yourself of a referral to the palliative care specialists. I know so many think they're only there to help manage when all else fails but really they are wonderful support to keep you comfortable no matter what stage someone is in.
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It is happy for many reasons. While I am off Caelyx it is not giving me any benefit as they say, I am in the process of being considered for a clinical trial at Princess Margaret. They need to screen my original tumour and we will know in about 2 weeks or so. If I have mesophelin (sp) in my tumour I am in. Crossing my fingers. If not, on to weekly Taxol with Avastin. In the meantime I am part of the Bio Diva study (I encourage others to join, it only requires giving blood) supported by OCC and it has shown that two markers have changed over the course of 3 months. Targeted therapy is a possibility so I am having a biopsy tomorrow to see if it all aligns (really don't understand the mechanics but good news). CT Scan Tuesday night for the possible trial. I feel great! Golfed three rounds last week (when it wasn't so HOT) and hope to get back to it next week. So while I am platinum resistant going into my third line, there is continued news about advancements and trials and options. I think we all hold on to that every day! Just had lunch yesterday with a teal sister and her husband. We hadn't met but we had talked a lot. It was amazing, Felt like were old friends! Other great news to share but I will stop and not take up the whole comment space!
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@gaylestorm So sorry to hear you are having difficulty with your eating. Good idea to see if there is some suggestions the doctors may have. I have found that sometimes I am looking for a complicated answer when it is an easy fix. Hoping that whatever they suggest works for you. I agree, resting is not a bad thing, why is we sometimes have such a hard time giving ourselves "permission" to do it?
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LOL @Taita Never feel you need to apologize or hold back on good news to share....we all thrive on that! And so glad to hear how things are developing for you. I too had to wait to see if a sample of my tumor showed the HRD mutation in order to get into that trial I was on for two years and whoopee...I did have it. I'll keep my fingers crossed for you. In the meantime you sound like you're feeling pretty good.....a few rounds of golf is wonderful.
I too am part of the Bio Diva study although as yet no reports from it. Strange but they were usually after me like vampires for blood samples around my CT timelines but this last time nothing. I should give the gal who coordinates a wee call...she's filling in for someone who's been temporarily reassigned to a Covid related project...so hope I haven't fallen off the radar.1 -
Yes, good news about trials and advancements, @Taita . Hope you'll soon get some solutions about the eating problem, @gaylestorm . I'm No Evidence of Disease. I'm supposed to wear thigh high compression stockings everyday, for the lymphedema in my legs. Some days I just wear the knee high compression socks, with leggings that I bought at Old Navy.
Anyway, the humidex is 40 in Montreal, so I'm staying home today.
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@Elsie13 it's lovely to hear from you again. It's been awhile. And so glad you are still NED although sorry lymphedema ended up an after effect. I'm not all that familiar with lymphedema...is it something that might eventually disappear or a chronic condition? I know it's quite prevalent in breast cancer survivors but becoming more frequent in the OVC community.1
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@Fearless - Vol Mod I would nudge them for sure! I couldn't believe I had two markers (they said were important ones) change. Even if they can't figure it out for me, it could help someone down the road. Okay, my other good news. You may have noticed the OCC auction a few weeks back. Well I bid and got a small item. What I didn't know is my husband (with the help of my daughter) was anonymously bidding on the diamond necklace that someone had generously donated. He and our family presented it to me a few weeks back. Quite the process to get it here in time for my husband's birthday dinner. They put it on my granddaughter just before we were going to dinner. They had it pulled up so it looked like it was part of her dress and when she leaned forward it fell down. There were lots of tears. I am so lucky to have such an amazing family and maybe as we said, that donation helps find the next great thing in the fight against Ovarian cancer.
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@Taita oh wow....what a wonderful thing for your family to do and in support of our cause. You must post a picture of you wearing it. I love to live vicariously through others and buying more jewellery is no longer in the cards for me...I seldom wear what I have already now that we live rural so my closet houses the mink, my jewellery box the "good stuff"; none of which seems to go with cornfields and chicken coops LOL.0
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Hello all from my chair in the “spa”. Hard to type bend arm and the iv stops flow. Nurse feels I need picc because they’ll had hard time finding vein. Clearly I have them! Haha. @gaylestorm I also hope for good suggestions from dr for you
@Taita I look forward to reading more great updates @Elsie13 where I buy my compression socks they sell a pair of red thigh highs… va va voom! @fearless I will check out the link you sent. There seems to always be great options to meet everyone’s comfort level of getting support.I can’t type easily but will keep reading til 20 -
Wait last, @Elsie13 manual lymph drainage massage for legs then they wrap them? Helped my mother a lot (was also an ex Montrealer)1
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@ToughAsTeal great that you can use our chat to kill time while at the "spa". Here in Kingston spa days are always Wednesdays but it was still a great time to bring my laptop and read OVd discussions. You and I share the "vein issue", along with many others. Have you considered a chest port ? I had mine put in in December just after I started chemo again and it was clear I needed an alternative to the usual IV process and it's been heaven sent. I do all blood draws through it. The chemo was easier and faster to administer and without the burning sensations I used to get from Gemcitabine when it hit my veins. The only thing they don't seem to be able to use it for is the CT scans. The product they use here is not capable of taking the pressure of the dye infusion used for the CT contrast. But I understand BC uses a product that is more versatile. The PICC I refused. For me, anytime to put something in my vein that is there for a while I end up with an inflammation or infection, nor did I want the burden of needing to have it maintained so frequently. The port only needs flushing once every 4 to 6 weeks so when you're in chemo that happens automatically. For me now that I'm done with chemo but they are leaving in the port if I'm not going in for general blood draws frequently enough I just need to go in for a quick flush in between. Wish, actually, someone had suggested it to me back when I was in first-line treatment.
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I have to sign off now. Off to the lawyers to sign for our new condo. It will be nice. Living in various places for the last two months has actually been okay but having our own place again will be great! I won't be on next Thursday because the movers are coming!! Yay! @Fearless - Vol Mod Here's the pic. I made it into a wrap around tennis bracelet!
WOW, that's a big picture!
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@Taita wow...it's beautiful and what a great idea to make it multipurpose. Good luck with the condo closing and move gal. It sure is an exciting time for you what with so much change and so much great news. We'll miss you next week but hope you'll catch us up the week after.
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@Taita beautiful! Best wishes for the exciting move! @Fearless - Vol Mod fantastic info re picc vs port. Nurse was just here she showed me picc. Suggested I get picc then be waitlisted for the port. Sounds like port is a better option all around. If I end up with only picc I will look for a fake tattoo sleeve haha. I don’t have any so, might as well!0
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Well, we're fast approaching 2pm and not sure if anyone is left. The picture Icons that pop up when anyone has signed in are not very reliable indicators of who's there at any given moment. Taita has now signed off and it's looks like it's just ToughAsTeal and me and I know she's challenged with typing with the IV in her arm. I can relate to that....put an IV in me and I become totally useless to do much more than turn pages on a magazine. And it looks like everyone else has moved on to other areas of OVd or signed off. So I'll say goodbye for today myself. Still have my son here for another week (next Thursday don't expect me to be other than teary eyed since he flies back to Alberta on Wednesday) but right now, although he offered I'm insistent on playing mom while I can so need to get a late lunch on the table.
Hope everyone reading this has a wonderful week....for those in treatment, that it goes well and is effective. For those awaiting news, that it's all positive and encouraging. And for everyone else, that any questions you might have had have been addressed.
I'll be here next week again, as usual....hope to see you then.
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I posted one comment earlier, saying that I'm staying home today, because of the heat. Then my husband suggested that we go out for groceries, iced cappuccino and maybe a pastry. OK, so off I dashed!
@Fearless - Vol Mod , I think it's a permanent condition, the lymphedema, and I'm not willing to work really hard fighting it, I guess.
@ToughAsTeal, around 2018, I learned the massage and the bandaging, but it didn't make much difference. I'm going to try showing you a photo. About a year ago, my Right leg got a bit bigger. When it comes to stockings, and leggings, I go for patterns, especially small finicky patterns on my Old navy leggings. The idea is that you won't notice one leg is bigger.
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Hi ladies just want to let you guys know that I won't be on today because of work but to everyone in treatment all the best, and you ladies are always in my prayers, stay positive. I have been back to work full-time after total hysterectomy and finished last chemo end of January.,so it just goes to show that we can still live a full life and beat ovarian cancer .I have my 4 months check up in mid September and feeling healthy so I am hoping for positive results. Take care ladies and stay safe.0
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Thursday, August 19 and it's 1pm EST and time for our weekly online live chat. So, WELCOME!!!!!
For anyone joining us for the first time, just clicking on the discussion topic Teal Thursday.... will allow you to view the ongoing discussion and historical chats. If you wish to participate with comments or to ask questions, ensure you sign in to OVdialogue and the click on the discussion topic Teal Thursday.... to fully enter the chat.
Wow, first morning in almost three weeks I haven't awakened to the sounds of my son making coffee for us in the kitchen. A two year wait to get him here, and then the almost four week stay just blew by. Yesterday up to Ottawa to drop him off at the airport for his flight home to Alberta.....and a very teary eyed mama as he walked through security. I know I'm not going anywhere soon....I'm stable once again and my oncologist has a big collection of tricks in her bag to deal with any new recurrence...but I just can't help feeling like each time I see him may be the last. So how do I get past that? Well, already planning Christmas since he's able to commit to almost another two weeks to share with us once again. There, here, away warm somewhere.....lots to think about and plan.
Has anyone read the latest Ovarian Cancer Canada Seeds of Hope? Wow, exciting news about the work going towards a vaccine to treat OVC. Do wish there'd been more detail around types and stages it might be appropriate for and expected criteria and when they might begin recruiting for trials. But I'm sure going make sure my oncologist is aware and stays on top of this one in case it might have some relevance to me.
And a collective bon voyage and thank you to Elisabeth Baugh as she transitions out of her role as CEO of OVC and into retirement. Her dedication over the past years has been instrumental in furthering the cause of awareness and treatment for our disease and she will be missed. So a huge thank you to her.
Well, enough said by me for now. Time to rock 'n roll ladies....it's 1pm. Please say hello....what's new for you...what's on your mind today......0 -
@Rad I know you're not with us today but will likely read today's comments at a later date so, thanks for checking in and continuing to offer your encouragement and support to the rest of us. We'll all be looking for your post confirming great news from your September check up. In the meantime, sending positive thoughts for your continued progress in recovery.
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Good Morning everyone. Having family visit is always great but the goodbyes are so difficult. Here on the west coast we have cooler temperatures and have had rain. Yeah! Some many fires and people losing their homes and business I am getting my eating problems under control with dexamethasone and full fluids. Chocolate and wine are still tolerate so life is good. Unfortunately, sleep is not the greatest, but I wouldnt be on this for long. The steroid has given me energy to spend time finishing a painting that i've had on the go for a while. I wont be able to stay on for long.
I am hoping that everyone is doing okay on this path we are all walking.0 -
Hello all😀0
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@gaylestorm so glad they found something to help with the eating issue. LOL dexamethasone seems to be the answer to just about everything. I know it gives me a ravenous appetite as well as copious amounts of energy when I'm on it for other reasons. But lucky you... chocolate and wine are still on the 'go to" list. I could live without the chocolate...for some reason it gives me headache. But the wine....yum.0
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Have to say I love the patterned tights last week @Elsie13
@gaylestorm oils? Watercolour? I would love to see picture if you might post.@fearless airports and goodbyes… CBC did show for a few mini seasons, Hello Goodbye. Me and my box of kleenex got through. I have plenty of extended family geographically far, but have never experienced the ache of the airport. Have seen it in my in law so I can understand. How many days ‘til Christmas? 🎄1
