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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@Fearless_Moderator I realized I didn’t write that post well. They couldn’t drain it because it disappeared!! The chemo is working again! 💃2
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Ladies, on that last very happy note, I'll end today's chat. Thanks for joining today everyone and I'll look forward to continuing our conversations again next week.
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@Fearless_Moderator
You are probably right about not looking at the results. The counsellor I see at BCCA said the same thing last year at the start of my chemo. I'm trying carboplatin for the 3rd time, so my doctor wanted a scan after 2 treatments, to see if we continue with it or switch gears to something else. I'll sleep better on the weekend if I don't check. Good advice. Thank you again.
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@Strongwoman and @Fearless_Moderator, Thank you for your words. I am very happy to contribute to this circle of wise women. The Brain Fog workshops are part of the many cancer related workshops offered through Wellspring, all completely free. They have dozens of workshops on a range of topics online and in person. Here is the link to Brainfog https://wellspring.ca/online-programs/programs/all-programs/brain-fog/
Here is the link to the whole range of online programs here https://wellspring.ca/online-programs/programs/all-programs/
And if you live near one they have a network of in person sites https://wellspring.ca/the-wellspring-approach/
My only regret is not knowing about them earlier. I have added them to my donation list.
Along with Brainfog, I have taken Nourish - Myths and Controversies. Healing Journey 1, and Advocating for Self Care. (I think the last one was co-offered with OCC.)
And I plan to attend this evenings webinar - The evidence on movement and exercise on Ovarian Cancer?
Thanks friends!1 -
Just realized the OCC webinar on exercise was Wed not last night. sigh... got my days mixed up. Anyone see it?0
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THURSDAY DECEMBER 15 AND ANOTHER TEAL THURSDAY TO OPEN. WELCOME EVERYONE WHO IS NOT OUT THERE MADLY SHOPPING AND CLEANING AND WRAPPING.
This is a month of many holidays and celebrations, the most common being Hanukah, Christmas, and Kwanza. If you celebrate a lesser known holiday please add to my list.
It's also a time of much emotionality for those suffering critical diseases like ours and a time some of our Sisters need that extra hug to get through it. Myself...I made myself a promise when I was diagnosed that for each Christmas I was here it would be a day free of cancer and full of laughter and cheer and as we went around the table talking about the past and making wishes for the future I would focus on the things that had made me happy in the past year and for he future, the wish to be together again one year later. So far it's worked. This will be my 6th Christmas to celebrate even though I'm on my 4th recurrence. And other than this dang neuropathy and constant fatigue and memory slips I feel great.
And nothing has changed. The exterior of the house is decorated. The tree (real) is up and decorated, other than the four ornaments that are especially sentimental to my son so they are put aside for him to add to the tree when he arrives next week. Other than that I am a complete failure...just started shopping (thank goodness for online), haven't even considered my Christmas menu and my menu for the arrival of my stepson and his family on the 27th and the house...OMG how can two people create such a mess and why does it take me 5 times longer to get something done to clean up than the hour it used to take?
We'll continue these chats through the holidays. so I will open the chats on the 22nd and 29th for those who'd like to connect. And for those who have unexpected needs to communicate, at the least I will be checking new discussions, new introductions and new comments all through the holidays. I do hope others in our group, especially our PSVs, will also be around to offer support to those in need even if only an extra virtual hug.It's now going on to 1pm ET so let's get started. Please say hello as you enter the chat and let us know what's on your mind today. .......
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Good Afternoon Ladies. How many of you are like me and thankful today for being the "gift" of being home and not having to travel anywhere in this weather? I have a pot of soup on, laundry in and now enjoying activities for myself.
I found some "meaningful" gifts this past week and didn't breakdown crying so that is good!
I feel like I have been able to figure out what I am feeling now, last week and I am sure into the holidays. It is called "anticipatory grief". I have been meandering between the phases of acceptance, anger and sadness. I feel like I am on a rollercoaster never knowing if I am going up/down or steady. I was struggling until I found this as I am thankful I am here and able to spend Christmas with my family and not feel unwell but on the other hand, I don't know if I will be around for the next one and in some ways wanting the holiday to be over so I can prepare the things I want to leave behind for my family. It is a very weird place to be and thankful I can find some laughter and "be in the moment" at times too. Here is a link to a what it is in case anyone else is going through something similar. Anticipatory Grief: Symptoms and Purpose (verywellhealth.com)
At Hospice yesterday, we celebrated my Birthday (it isn't until next week) as we will be doing a Holiday thing next week before we take a break. I cried (happy) tears when they sang to me, when we sang some songs that I had picked out and when they gave me their gift as well. It truly was a lovely day and they are all wonderful people. I am so glad I joined the group and look forward to attending it every week. I was so hesitant in the beginning not knowing if it "was for me" and scared in some ways too. I will admit, I cried most of that first visit and was embraced by the group as a whole during it all. For those that have not or may be hesitant, think about it, reach out in the New Year or get it set up to attend in the New Year and take a leap. They run some amazing programs.
Currently looking for a "Gandalf looking" pipe for hubby for Christmas which is what I will be doing during our chat today. I found one that actually has a face of Gandalf on it. Not sure it's "the one" and will keep searching. He started pipe smoking when I was diagnosed. Now he is collecting them and I have found some antique ones that are just for show as well.
What is everyone up to today?
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What the heck happened? There were 11 ladies on just before this chat. Nap time???? LOL
Enjoy if you did take a nap.0 -
It showed 11 at your end. Not here. We were, at the end last week, 11. But that data doesn't carry over. Very strange.0
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Just you and me again Strongwoman. I'm really thinking of either changing the time to a bit later since we get more coming in closer to 2 or trying an evening chat which might be better for those out west and those who have gone back to work. What do you think?
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Well I am done my shopping. Now on to my next activity....found 2 books at Chapters.
The Story of My Life
The Book of Me
Both are fill in the blanks with prompts either at the top or on the page to help you fill in "memories".0 -
I don't do well at night. Everyone is home then and they want my attention. I think a little later or earlier in the day. Any way we can set up a poll? I know, late morning like between 10-12 used to be a good time for me when I would nap in the afternoon. Any thoughts out there on this?0
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@mjmck21 sorry you missed us last week and the Speaker Session. I didn't register for the Session so haven't seen any follow up emails but I am assuming they recorded it and you can find it posted by now on the OCC site. Thanks for the links to the various sites. That will be helpful to our members. So would any takeaways you have from any of them that might be great "ah-ha's" for us or offer a quick fix for someone who can't get to the sites themselves quickly enough.0
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I know what you mean about evenings. Anything after 5 I avoid like the plague. I do do a monthly zoom with 4 friends from Toronto who I adore but not at 6 to 7. But I do it because they all work and connecting with them is important to me and to them. Interesting though that this online chat was originally on Tuesday evenings at 6 or 7 I recall. Past data shows it started with a big bang but eventually dwindled way down for some reason. I thought perhaps timing so when I took over I changed it to the current, only because that was the only time I was wiling to moderate and no one else stepped up to volunteer.. We started with great participation until just recently so I've been trying to assess why and going through back-end data to see what's going on that might help me decide what to do.0
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Late again but am here. Napping comes on sudden it seems.1
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Or is it Holiday time that is doing part of this?0
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Hey @ToughAsTeal better late than not at all gal. So glad to hear from you. How are things going? You're the most resilient member I've met with the best attitude (that translates to sense of humour) . Been biniging the internet much lately. I'm now getting caught up in these mini series and hating having to wait a week for each episode to "drop".0
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@Strongwoman I haven’t made it to chapters yet but aim to look for those books.
@Fearless_Moderator I will support any time shift that might help be good timing for all.I am also very very grateful not out there driving in our sloppy Southern Ontario weather today.Will feel better when my son is home from his day at work and mom drive home. He sent me a picture a while ago when he stopped for lunch… a wild turkey shows up and wouldn’t let him get back into his car!!!!0 -
Hello everyone. I will confess to trying to take a nap! Crazy weather today!! @Strongwoman thank you for that article. I will read it because I need to.
. The DR put me back on Avastin with my Taxol last week and this was supposed to be my “off/good” week. Today is the first day since last Thursday I have felt like I am actually functioning. The Avastin has reared its ugly head and caused an infection and fever as it does. While it is a good drug and it has worked well for me I have been on it through the trial and with Taxol. So 16 months. I think maybe it is time to put it to rest. I want a decent quality of life and this isn’t it. See my doctor tomorrow and we will come up with a plan 🤞. In the meantime I lost someone very close to me this week. He was diagnosed with multiple melanoma a few months before I was diagnosed and it of course makes it all more real. I have never experienced depression (I don’t think) but I think I am and that is another conversation for tomorrow. Apologies for the long missive but I needed to get it off my chest as they say. . You are all an inspiration to me. Feeling exhausted is no excuse for not pushing forward so onward and upward as they say. 1 -
Progress picture of my insomnia knitting to get this cardigan done for my daughter for Christmas. Still to finish left front, sleeves, and banding up the front and around neck. And optional pockets
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@ToughAsTeal you sound i great spirits. Yes, I've experience the wild turkey barricade before. They are the laziest birds ever. Don't even move when I tell them Thanksgiving is coming! Storm hasn't hit us here yet and hopefully not for a couple of hours. I have to get to Shoppers in Napanee ....20% Seniors discount day Thankfully we have the truck too but even 4-wheel can't get through the really bad stuff and where we are it's all lake effect which is worse than it coming straight down.1
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@Taita
You get it off your chest, it is important! And do NOT apologize for anything. Feel what you are feeling and talk about it, don't hide it as this IS what we all go through at different stages and times. This is the real deal!
I support the "quality of life" part of your decision. Deciding on if your treatment aligns with being "present" versus "feeling unwell all the time and other drugs added in to counter" comes to decision making and it isn't easy. There is no ONE answer...only the answer that fits YOU! Don't forget that. I am saying that because sometimes we also think about what the family will think etc. It takes great courage to make decisions for ourselves don't forget that!3 -
@ToughAsTeal
Good for you! That does take concentration which is difficult at times I am sure. Plus the sitting. I try to do a sitting activity and do something else that makes me get up sometimes....like stirring something on the stove or laundry. Or....sometimes I say forget it all and park my butt and that is it!
Let me know if you want me to pick you up anything and drop it off to you. I don't mind. Just send me a private message and we will figure it out.1 -
@Fearless_Moderator
Freezing rain has stopped here and it is trying desperately to snow. Senior's discount.......that sounds good.
Turkeys are supposed to quite a smart bird with photographic memories.....now don't we all wish we could be a turkey now? LOL
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I love seniors day at shoppers, rexall, m and m meats etc… love to get carded!!! Lol.@Taita it’s all a bit surreal at times my is how I describe it. I have a good day, a good afternoon, and I feel how can I possibly be “sick”. Then some challenging days and I count in 30 minute increments to see when pain killer will kick in. Kick in and kick butt. It’s additionally hard when also faced with the sadness of loss. I know we all send you strength.1
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@Taita glad we're here to offload too. I know losing a friend, especially when it's cancer really takes a toll with me too. All of a sudden reality raises its ugly head and I too go through a few downer days when I become a bit sullen and sad unlike how I am at other times. It does go but usually takes me having a stern talk with myself to put it behind me. So wallow in how you're feeling for a bit. It's healthy. Then put it i the that compartment where you keep the sad stuff and shut and shut the door.
So sorry the Avastin is causing such problems for you. I really think I was so lucky for those 13 cycles having just about no reactions to it. But you're in the majority I've heard from. At least you can make an informed choice to give it up so hopefully your oncologist has a reasonable Plan B for you to consider. I'll keep my fingers crossed for you. I might get a sense of my new Gemcitabine regimen next week. Just had #3 of a 3 dose cycle yesterday and they'll do my CA on Tuesday for my clinic appointment so hoping we see something positive on that front. Not counting on it though. Gem is slower to create a response than many of the drugs so it might be 2 or even 3 cycles before we see anything. I'd be happy with just stable this time.2 -
I just went through an exercise in one of the books that said describe 10 things in your room growing up. We had one bedroom for 3 girls and 1 closet. OOOOHHHHHH the fights!!!1
