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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Welcome to our newcomers0
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Well I don't know about the rest of you but I feel like the conversation has just started and could go on for awhile. So, if this chat ends and you still want to chat.....start up a new thread in discussions and onwards we go.
If not, I wish everyone well this coming week and with any results, discussions and decisions you may have.
Stay true to you.1 -
My doctor prescribed me zopiclone 5mg for sleeping. I sometimes cut those in half0
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Well ladies, it's been a wild ride today. Lots involved, some commenting and others just viewing the dialogue. I hope everyone got what they wanted from today's chat.
My take away is that so many of us are on critical and complicated paths right now. It always seems that way around the holidays. But so many of us relying on the resources available to us to make good and informed decisions, some short term, some long term. For those who are consistently recurring please remember that if you can find treatments what are tolerable for you, your life can still be fulfilling. Just in other ways than you had planned. For those, try to dwell on the good in your life and not what you think you might have lost. Fpr those who's path looks far different, lean on this group, lean on your loved ones, and think about following Strongwomans path of engaging with Palliative oncology early to help shape decisions and your roadmap.
When I see you all next week, I will be 72. I had prayed I'd get to 70 so once again I'm beating the odds. I'm aleady gambling on all my chips that I'll see 73 and still feel as positive and content as I am todayl. Wish me luck!
Hope to see you all next week. Much love to all of you i the meantime.
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You have all inspired and given me hope. Thank you ❤️1
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@Strongwoman
So sorry to hear about the side effects you are experiencing from the trial drug. What a difficult place to be.
With all you are going through at this time, thank you for reaching out. I have a CT scan on Tuesday to see if carboplatin is working. Some days my stomach discomfort feels better and some days it feels worse, so I really can't figure it out. I'll find out soon enough, and try not to stress about it too much in the meantime.
Congratulations on your anniversary and have a wonderful celebration!0 -
Hi everyone, just wanted to say hello. I haven't been able to join TEAL Thursdays for awhile because I have been attending Wellsprings Brain Fog series held at the same time but will join back in a couple of weeks. Things have not gone well for me I'm afraid, in full recurrence if I can even call it that since there has been so little time between and Zejula did not work. Looking at the whole thing all over again but did not want to try and fit my thoughts/questions all into the other discussion forums while I'm still waiting on a lot of treatment decisions. I have been following all of you and have had you all in my heart. Lots of love and will be thinking about you all as we carry on.0
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@mjmck21
Thank you for letting us know your current situation and all that you are going through. It must be very tough indeed. When you have time, if you could let the rest of us know how the "Brain Fog" series is and any highlights you can give to the ladies would be helpful. Totally understand if you can't, you do have a lot going on.
I found this quote in a book I read recently and feel it applies to all of us
From Die Wise by Stephen Jenkinson
"Cancer patients were--and mostly still are--armies of one, separated from the people around them by what they've seen and what's been done to them in the War on Cancer in the name of getting better, for however long they live thereafter, Lazuruses all."
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WELCOME TO TODAY'S LIVE ONLINE CHAT. iT'S THURSDAY, DECEMBER 8 AND JUST TURNING 1pm ET.
On a high note, I turned 72 on Tuesday and I'm still singing Happy Birthday to me. I never expected to reach that milestone; actually reach any milestones past 67 given my prognosis but by virtue of great doctors, the support of family and friends, a good martini before dinner every night, and this tough Irish iron will I have I am still here and still able to dance a jig. And I'm so looking forward another Christmas day....really the turkey and fixin's ......with my family around me.
Of special note I am sad to say our membership has taken a spring forward with new members, some of whom are newly diagnosed but many facing their first recurrence. If I can offer any general advice, educate yourself, advocate for yourself, ask lots of questions and stay strong. We are the most resilient group of women I've ever encountered with so many now realising cure is not in the cards and have turned their attentions to learning to live with the disease.It's now turned to 1PM so let's get started. Last week we started slow but by mid-chat we were loaded with great conversation and participation. Hopefully we'll have the same today. So please sign in, say hello and tell us what's on your mind today..........
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@Fearless_Moderator
Hello! Thank you for beginning. I too extend the sentiment to all wherever they are on this journey.
I, will report that I had my discussion with my Med Onc and he concurred that I am to discontinue the Trametinib for now or maybe forever. It has been 1 week since stopping it and my face has improved a little but nothing earth shattering. Still hurts if I touch it the wrong way, new eruptions are slower coming as is the dry, flaking skin, redness still very much present and pain has lessened. I have read it could be a month or longer for it to be gone. I still try to wrap my head around the fact that this was only 2 wks and what occurred that I am forever thankful for my working mind and the ability to know that the side effect was not worth what the treatment would accomplish. I think it may have been different if it was not painful or had "eruptions" and the flaking. But who knows.
I will admit that I am having difficulty this holiday season. So many emotions running through my head and I am sure my recent reaction to the medication has not helped. Putting the tree up today with my sons and decorating so that will be fun.
Here is a funny one.... I just got a notice to appear for jury duty in the beginning of next year. I have already called and followed the instructions to ask to be either deferred or excused entirely. We will see what happens. I kind of laughed out loud when I read it. They don't want me, I would probably cry at the slightest little thing, upset the whole court and they would have to recess!0 -
@mjmck21 we'll look forward to having you rejoin our chats when you're able. Hopefully you can bring some learnings on the subject of brain fog to those chats. I, for one, could sure use any new insights. I am sorry about your recurrence. Stay strong gal. It will all get better once you have that treatment plan. In the meantime you're in my thoughts.1
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@Fearless_Moderator
On another note, I am also probably more emotional as I have started writing and not sure if it is something I will pursue in the future to have become a book or something just for my family. We will see but it is very difficult some days and I believe in some ways it is emotionally healing. I have read a lot of stories, etc and have thought about why I would want to write and what. I think so far I have 12 pages and I started this week. That is not going back to edit/add anything yet as I have read to do that after but just to keep thoughts flowing.
I had a friend call me this week to tell me they had cancer and this was the thing that caught me the funniest "we are now cancer buddies". All I could think in my head is how to I validate what they just said but educate them that our journeys are different as will be treatments. I feel I pulled it off but it is interesting because it is a totally different cancer than anything here or female mainly oriented and that it's this "club" so to speak. Long journey ahead for sure and will be there for them as much as I can be.0 -
@hope2022
I see that you wrote after our chat but did not check to see if you are on today. If so, are you ready to share how you made out with your CT scan if you have the results? Still digesting or waiting, all good, reach out when you are ready.0 -
@Strongwoman you've sure had once of the worst reactions to a treatment that I've heard, Just one of those examples that what works for one doesn't work for all the same way. I do hope your face clears quickly. It must be agonizing. But you're right. The outcome intended doesn't support continuing something that's not only disfiguring but extreme in the pain it's causing you.
We'll be out to get our tree this week and I do look forward to decorating it. I spoke with my son last night and asked if he'd prefer we wait so he could join us. His response....go ahead but leave the toy train, the little bear that says Tyler's 1st Christmas and the angel for the top to him. Interesting at 35 he's still sentimental about certain ormaments. Have a blast with your sons tonight. It's times like those that I decide not to think about the past, it's gone and you can't change it. And not to think about the future, it's still to come. But to just enjoy the moment as it happens.1 -
@Fearless_Moderator
Thank you, tough day emotionally today already. Decided today was the day I would get the engraving done for the sons for a ring and pocket watch we got them for their bdays this year. Ring child wanted my initials and "something" on it and the other wanted it to be from us. I cried telling the people what to put. Then I decided that since I was in the mall, why not go support Hospice and buy some ornaments for my loved ones. I didn't even make it to the table and was crying, cried through picking them out and leaving. Just not my day to keep "it in".
Turning a corner now but I am exhausted from it all.0 -
@Strongwoman we all have those days where emotions get the best of us. It's natural, normal and predictable and I've found it's best to go with it as long as you can control it enough not to take over every waking moment. I've been less the cryer and more the screamer so when my emotions are ready to burst I take a walk to the middle of our 11 acres and scream every invective I know at the top of my lungs. Breaking dishes used to be in my repertoire too but the cost of replacing them made the act prohibitive.0
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Late but here my sisters.0
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Hey @ToughAsTeal I was hoping you'd be able to join us today. How are you feeling? How are things going with treatment and support?0
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@ToughAsTeal
So so glad you can join us. How was your visit with your family?
Reading anything lately?0 -
Family visit was wonderful. I just finished 5th radiation yesterday to hopefully help with symptoms. Bad edema in left leg due to presence of cancer in lymph node. Stoma has ballooned. Looks like a permanent tennis ball on my abdomen. Conveniently it will support a small plate of cookies when I am sitting down.Just got off phone doing pre arranged cremation. I can get their sale price if I pay before Dec 31. I am finding the humour in that.0
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@Strongwoman
Sorry to hear that you are having such an emotional day. I hope tomorrow will be better for you. Christmas can be so joyful, but tough at the same time.
I don't have the results from the scan yet, but have an appt. with my doctor on Monday so will know for sure then, if not before. My blood work tomorrow should give me some indication of what's going on, that is if I am brave enough to look at it online. The ca125 always takes a day or two longer to be posted...positive thoughts!
@Fearless_Moderator
Thank you for all of your inspiring posts. I can't tell you how much they have helped over the last several months.
Hello to everyone today0 -
@ToughAsTeal
I got a chuckle out of that as well. If you don't mind sharing, which home were you speaking with? I know we live in the same area so am curious. It's next on my list of "To Do". I have business stuff wrapped up, waiting on changes we did to our will, was approved for Disability Tax Credit, finished completing the CPP-Disability form with a social worker yesterday and sent it off today. She told me I get an A+++ for being the best organized she has seen yet. This humours me as she strikes me as maybe being my oldest's age which is 23.
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@ToughAsTeal your ability to see the humour in so much of what's going on with you is so inspiring. I inherited a dark sense of humour from my father; my son has inherited it from me. So, like you, I can find laughter in the oddest places these days. My most recent was arriving for my Gem treatment a couple of weeks ago and for once, there was barely anyone in the chemo room. So I just had to ask....what's happened, this looks more like a morgue. Yup just rolled off my tongue. Thankfully everyone else there shared in the thought.
I do hope the radiation fixes you up. Not sure about yours but when they finished with me they told me I could possibly see change even weeks after and they were right. I am only now, three weeks later, feeling some improvement in the mobility in my right hip.1 -
@hope2022 glad you were able to join today. Were it me, I would fight the urge to look at my blood work results...CA particularly. Since you've got your meeting with your oncologist and CT results coming wait to see the big picture rather than look at it in components. That CA score means so much less than what the scan will tell and if it's up just worry you often for nothing since the results are so volatile. I remember my first CT after I'd started a clinical trial. My CA went up 400 points and i| was panicked. But the CT showed my tumors had already shrunk more than 50%...so go figure. I now only look at my CA for trending and not the score itself. But I'll be keepng my fingers and toes crossed that you get good news.0
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Sorry to be so late. @Strongwoman thank you for sharing what is obviously a very difficult day. Sending big hugs. @Fearless_Moderator Congratulations on reaching new milestones. Everyone no matter how big or small is the right direction. I will read the posts later as I am Just at the doctor with my husband. I will note that I went to get my ascides drained Monday and it is all gone!! So positive for sure! Have a great weekend everyone and I want you to know how much I value your presence on this blog. ❤️.
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@Taita glad you were able to check in with us today, Hope the doctor's appointment went well and great that you got some relief from draining the ascides. We can catch up more next week if you're able to join again.0
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@Strongwoman Wall Custance. I cried my way through the call. Betty Ann is who I talked with. Wall custance we have used in the past most recent my father 2 years ago. They have small chapel, a reception area downstairs.0
