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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Thankfully no reoccurrences during that time. I was diagnosed at stage 1C, so I was very luckily in that regard.0
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@Annie1950 Thank you Annie. I havent had the energy to paint lately but hopefully soon. For distraction today my husband and I are putting together 2 kid battery ride on cars for the grandchildren. There parents dont want them but what happens at the grandparents house, stays at the grandparents house.2
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@gaylestorm - I have had one Caelyx/Avastin treatment and go for my 2nd Avastin next week. My CA125 has remained at 8 for the past 6 months so it is no longer an indicator for me. I will get a CT after 3 treatments to see if this chemo is working. It is stressful considering that we could be on a treatment that is not working. I have heard that it is common for the CA125 to rise after the first 2 of these treatments. Here's hoping it is working just fine for you.0
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@gaylestorm I am so sorry to hear that. I hope they manage to keep you on chemo and that it improves over time. You are so inspirational with your Christmas in September, your paintings and your love of life!0
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@gaylestorm You're right. What happens at grandma's stays at grandma's. We've had so much fun with our grandkids and it sounds like you have too. It's hard not to smile when they're around.0
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Every easter we have an easter egg hunt conducted by the big bunny himself (our fifty year old son). Thank heavens he's a runner and can get away quickly from teenage grandkids trying to wrestle him to the ground in his bunny outfit. Much fun is had by all.0
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Well ladies, it's been fun chatting. Here's hoping our dear moderator will be back in the swing of things this time next week. All the best for a great week and weekend.
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to everyone, I see we've hit our hour, I will be signing off to get my late lunch. Wishing everyone a good week ahead! Hope to get the good news that Fearless is back with us soon. TTFN0
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Have a great day all! And thanks @Annie1950 for stepping in today!0
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Annie1950 said:Good afternoon ladies. Unfortunately our amazing moderator, @Fearless, has hit a nasty snag and is currently being treated in the hospital. She's hoping to be released soon and will most likely be back next week. Please join me in wishing her a speedy recovery along with everyone else going through treatment at this time.During the past year I have found this site to be a source of inspiration. Hearing of people's struggles, the diagnosis and prognosis and overall mental anguish in navigating treatment of this disease is heart rendering but still the humanity, sense of humor and grace shines through. I feel thankful that I've had this support during my journey.
It has been so long since I have been able to actually make the chat. but I am always going back and reading stuff when I can.
@Fearless - Vol Mod I am sending all the positives I can.
To everyone else. Even though I am not on much lately, I read your comments, share in your celebrations and share your pains. Please take care...always.
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THURSDAY, NOVEMBER 18 AND I'M BAAAACCCCKKKK!
Gosh I missed all of you last week and thank you for so many good wishes. Just one new blip in the road that with some excellent professional attention got fixed pronto and I was able to resume treatment yesterday. The really good news, my first Caelyx Avastin treatment three weeks ago has had some effect already. CA125 is down from 7500 to 5400. I'll take it!
And thank you to @Annie1950 and @jiselle16 for stepping in last week to host the chat so capably.SO WELCOME TO TODAY'S LIVE ONLINE CHAT.
A few items of note:- I'm sad to say the role of Regional Director Western Canada has been eliminated in the OCC corporate structure and Tracy Kolwich, who held that role along with providing oversight to OVdialogue has left OCC. Tracy's deep support and commitment to us will be greatly missed.
- A shout out to two of our community, @Taita (Kim Rudd) and @KarenBemi (Karen Bemiester) who so capably participated in the panel sessions at the Symposium two weeks ago. There may have been others of our community. Unfortunately since we use 'screen names" here I'm not always familiar with 'real names' of our members. So thank you to anyone else who had a hand in that great support program.
- Last Teal Teas for the calendar year next week so be sure to register if you wish to participate.
- Finally thoughts go out to any of our Teal Sisters or their families affected by the terrible flooding in BC. Prayers that everyone is safe and life restored to some semblance of normalcy as soon as possible.
So ladies....it's 1:00.....who's with us today? What's new? Tell us what's on your mind.......
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@Fearless - Vol Mod - Hello! You've had quite a time lately, haven't you? Glad to hear you are doing better and the CA125 drop is amazing!
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What's on my mind? Well, I passed the five-year mark and have officially graduated according to my oncologist, Dr. Hal Hirte. He is retiring at the end of December. And I found out this week my GP is also retiring at the end of December. He has found a replacement and she sounds good on paper. We'll see.
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@kastoyles
Hi there....great to see you with us today. How's the weather out your way. Here its so bleak....cold, gray, damp brrrrr. Although compared to the disaster in BC I guess I should be grateful that's all and nothing a nice cozy fire and comfy chair and book can't address.0 -
@Fearless - Vol Mod have been thinking of you so much this past week - ca125 is great encouraging news!
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It's dull and dreary. However, when we went for our walk this morning, it was around 50 - so I'm not complaining about that.
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@kastoyles
OMG, congrats on officially "graduating". Oh how I'd wished to see that five year mark myself. That will never be but so glad we're seeing more and more of you these days. Just goes to show how wonderfully talented our medical professionals are. Even for me, while I will always be recurrent, I never thought I'd be on my third and in my fifth year of treatment off and on and still be feeling as great as I do...and with lots more ahead for me.1 -
@Fearless - Vol Mod - I lost two friends many years ago to ovarian cancer. They were diagnosed so late and of course didn't have the treatments available that we do now.
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@ToughAsTeal
Great to have you have you back again. Yup, I was getting pretty nervous seeing the climb of my CA scores these past few months so to see such a dramatic drop is so encouraging (even though I still believe scans are what really tell the tale). Fortunately I am one where the CA readings do tend to reflect the status of my cancer, unlike many where it's just up and down like a pogo stick for no rhyme or reason. How wonderful it would be if they would develop some really reliable diagnostics, eh?1 -
@ToughAsTeal - my husband and I are pretty happy - but at the same time it's an odd feeling to realize that I won't have the contact with my oncologist anymore.
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Hello from the East Coast where it's wet and rainy today - but of course nothing compared to the unfortunate and sad situation in BC.
So glad to have you back with us @Fearless - Vol Mod!! And glad to hear that things are moving ahead again.0 -
@kastoyles
Yes, it's like your seat belt undone even if the car isn't moving. Some comfort about having around you.
@ToughAsTeal
Bad me, I forgot to ask how you are. Anything new?1 -
@kastoyles I read and read so often of the similar feelings of losing contact with oncologist -- here you go little bird, you have been under my wing for 6 months, a year, etc... and go fly now.. .off you go... talk to you in 6 months... it's like being told best friend is moving "but don't worry we'll still visit" or losing a hair dresser who really KNEW how to cut your hair --- but she's going to work out of her home, 45 minutes drive away... and can still call her if you need a trim (but you know you won't)1
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Congrats @kastoyles, that is wonderful news! Like @Fearless - Vol Mod said, it is so encouraging to see so many of our "graduates" around...it certainly gives hope and encouragement to the rest of us!
@ToughAsTeal, good to see you too - how are your treatments going?1 -
Thanks @Tinazzie
Just amazed at how much I learned about kidney function while in the hospital. Lucked out with one of those young, very passionate about his specialty doctors...a nephrologist actually. And given my natural curiosity was glad to let me pump him for information. In there on hydration for three days straight while they got my kidneys function from 25% to 90% again. Pretty scary but at least they seem to have ruled out the chemo or even cancer as the cause. Purely dehydration (and geez, I thought I was drinking enough water) combined with effects of some BP meds that I've taken for 35 years. Stopped those, my BP has never been better and kidney function ok. Goes to show, as he said, to validate meds every 5 years instead of just constantly renewing. You'd think your GP would do more about that but guess they just get a fax from the pharmacy and sign off ..... at least that's what mine does. I won't be letting that happen again.0 -
treatments.... most recent was last Friday -- the Caelyx + Avastin day. treatment went well. feel I'm closer to finding the magic post chemo combo of 1 senekot at night, plus 1 or 2 restorolax during day. trying to get walking daily,, even if just treadmill. not getting outside enough. trying to increase water. still eating low fibre. mental/emotions biggest challenge. doing a "mindfulness" course 1xweek. teaching us how to slow our breathing. 2 min in, and I'm like "hurry up already" so I'm working on that.1
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@fearless - that's scary! You're right though, all the GPs do is renew the prescription and say the improvement in your health is because of the drugs. Huh....they don't take into consideration changes in exercise, diet and weight? My GP is retiring in December...I wonder if the new one will have the same philosophy about medicine.0
