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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@mjmck21 I believe its intended to be zoom, so more overlap the Teal Teas. But all hasn't been worked out yet. I have my monthly moderators/OCC call next Thursday morning and will ask about progress on this new collaboration an d progress finalizing it. Whatever I learn I'll pass along on our Teal Thursday that afternoon.1
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Yes @ToughAsTeal having PARPs available on Trillium is excellent news I just got caught in the middle of the process. Those Drug Access Coordinators are angels we didn't know existed until we needed to.0
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@Eileen
I think you will love the port. I did when I had mine. For some reason, chemo did not make me as nauseated with the port as it did IV wise.0 -
@MadBel
The other thing you can do re: lymph nodes is take photos every now and then to have something to compare them to. It may help yourself and your doctor as well. Sometimes when we see it every day, it looks the same.2 -
@Strongwoman I havnt yet looked into hospice programs.. the ostomy surgery recovery and chemo is about all I can do right now.0
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Yes @Fearless_Moderator. That part i am glad to finally be able to get my port installed. What gets me is i rechecked with the radiologist in case my blood levels was too low to have it put in. But they say nope your blood levels are good for the procedure. Ok. To me it doesnt make sense. Im ok for my port but not ok for chemo. Yes they did say I will be on a lower dise. I just didnt expect my levels ti drop so low so fast. My platlets always bounce back quickly but the nurse told me with the gem it takes longer fir the platlets to recover. I was already 3 weeks past where i normally would of had my next scheduled chemo for caeylx and avastan. To decide whether or nit to do the trial or not. Now its another month my to wait. All i can visualize is my tumors with a big happy face going yes bigger we get. The first week ok but another 2weeks is a bid disapointment. I get that they want u to be safe. On another note so sorry to hear about the 1 dog. I know hiw dramitizing that can be it happened to my dog i had previously 13 yrs ago0
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I bet it is. I just looked at the previous post and you are in Guelph which is the one I am attending. I can let you know about it after I have been. I go to the urologist on Monday to determine if I need a nephrostomy or not.
That is where I am at and also waiting...still waiting to hear if I will get Trametinib or not. This is 4 wks today that if no one calls tonight that I have not heard from them.0 -
Sorry....I meant to address that to @ToughAsTeal0
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Hi @ToughAsTeal how are u doing these days any better0
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@Eileen
It will be because of the procedure itself and its affect on your body versus what chemo does to your body. That is why it would be safe to do it vs chemo.0 -
Well ladies, it is almost that time so I wish everyone well as they can be and will touch base next week with everyone.
Hang in there!0 -
@Strongwoman thanks for that suggestion. I wish I would've thought of that. This has been going on since the middle of August.0
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@MadBel i for sure agree with @Strongwoman with taking pic of any visual side effects. I do that constantly and when i go in to my apointment with my oncologist i have something to show her and i label them with that days dates.2
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@Strongwoman yes would love to hear about you at Guelph program! I was offered to get catheter to help with the frequency… but… interesting it seems to be related to the pressure of mucous membrane building up to be expelled via rectum. So, dr says catheter won’t make difference. Also interesting that if I take pain med, the pressure “pain” is finished and I don’t get that same urgency. Just started to piece this together yesterday. I know Nephrostomy may still be in my future.0
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@strongwoman, sorry to hear about the nausea. Do you have Olanzapine or some other med to help control it. I occassionally get feeling quite nauseated for no reason. But. then it disappears as fast as it appeared.
|I don't recall anyone sharing anything about palliative care support. Strange actually since I'm sure there are many o us under their care. Perhaps because many seem to think that means the end if you're getting their support which is not the case. They are super about finding ways to ease discomfort or help with dealn with someone's anziety. Do try typing in some key words int he search box on your screen. i shouls pull up any relevant discussions.1 -
N another note my drivers license is up for renewal. Well that was a fast 5 yrs ok new pic with the new me short grey hair lolol0
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I can’t type fast enough and it’s already 2pm!Love the suggestion to take picture of lymph! Imagine if we still have to take film to get processed.. glossy or matte?0
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Lolol @ToughAsTeal. I still have both my minolta camera with all the extra big lens use to do it as a hobby for my paintings. I am glad to hear they figured out your urine issue.0
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Ok well have a great week everyone. I will let u know how well i faired in getting my port this monday. Yes @Fearless_Moderator they use the port here in bc for your ct scans. I noticed they did it for 1 woman while i was waiting to get my scan done last jule0
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Thanks for looking into the OCC forum @Fearless_Moderator. I will be interested to know what you learn.0
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By all, Have a good week everyone.0
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@Eileen I loved loading film… getting the prints back… so much more tangible!0
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Have a good week everyone. Keep moving forward 😀🌻0
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Well ladies it's 2:07 and time to sign off. Just as well. My eyes are getting blurry and it's getting really frustrating trying to communicatae. Gosh i do hope once this chemo I'm on ends my vision will normalize. Until then I just rely on my touch typing, hence so many typos.
Have a wonderful week ladies. Last week I sat at my dinner table listing all the things I was grateful for and, despite having this disease and it being incurable, my list went on and on. I felt I could take on the world after that.
Cheers for now and see you all next week,
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Thursday, October 20. Hi everyone using my mic so I hopefully things will type properly. Very very tired from chemo yesterday and also now from taking anti-nausea and pain meds so forgive me for not joining in today but I hope all is well and we keep moving forward. Laura.1
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@ToughAsTeal I totally understand and hope you feel better in the coming days. I went to that Palliative Program so reach out when you are ready and I can let you know anything you might be wondering about it. I will be returning to it next week.
Healing vibes being sent your way.0 -
COMING UP ON 1PM ON THURSDAY OCTOBER 20 AND ANOTHER TEAL THURSDAY, SO WELCOME.
How everyone's week been? @ToughAsTeal I see you're already out of the gate today. So sorry about the fatigue and other side effects from your treatments. Are they having the expected effect? Or too soon to tell? And how about your surgical recovery?
No big news to share other than the upcoming Symposium Still waiting for a detailed agenda but I can pretty well guarantee there will be something for everyone. The OCC group have been excellent at listening to what we have to say and reacting accordingly.So, let's get rolling today........
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@Fearless_Moderator Not bad.....how has your's been. Are you feeling better than last week?0
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@Strongwoman that's very kind of you to share your learnings with Laura. Is there anything from the program or a desciption of it that might be worth sharing with the broader group?
As for your question about me........it's been a really lousy week with nose bleeds, a combination of Avastin and drier air with the cold comimg in. Sitting here right now with a cotton ball stuck up my right nostril. Yes, I been cauterized for what that was worth and probably have to go back for another run unless anyone here has any suggestions. In the meantime the trails of blood around the house from when the tap in my nose turns on looks like a vampire must live here. Good for Halloween !
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