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).
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@fearless gosh that's an important takeaway for me re meds. never would have crossed my mind either. thank you
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@ToughAsTeal
Any side effects from the Caelyx Avastin combo? I've only had one combo so far and then just Avastin yesterday. Keep waiting for the mouth sores and hand and foot disease (somehow a cow comes to mind when I think of that) but nothing so far. Just felt like a truck had hit me for about a week after the Caelyx. So the Avastin has been nothing but wee bit more tired.0 -
@ToughAsTeal - I had so much trouble with the 'mental' side of cancer and it took a long time before my brain settled down. Deep breathing/relaxation exercised helped tremendously. But it was a long time before I stopped waking up in the middle of the night and spent two or three hours fretting, tossing and turning.
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@Kastoles, I live in Halifax, Nova Scotia.
Yes, the thought of being "cut" from regular surveillance is frightening. More so, when there are no outward symptoms that can ring a bell that something is not quite right inside. In so many cases, our confirmed OC diagnosis came as a result of scans for other medical suspicions. I'm hoping I will find that balance of being positive and happy on one side and trying to be vigilant to what my body might be going thru or trying to tell me.1 -
To those of you NED, any one on a PARP (Zejula or Olaparib?). We've had a number of new members reaching out for info on them, especially Zejula. Most having issues with side effects or worried they really don't do much in the grand scheme. I had my two years on Olaparib but it wasn't for maintenance for me...a clinical trial as a treatment so other than what I"ve heard from others I don't have much to share. If any of you have had any experience keep your eyes out for those posts and do respond if you can. I do know that there are differing dose levels and it's fairly common to have them adjusted without detriment to the overall outcomes.0
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@Fearless - Vol Mod I get what I think is start of a mouth sore, then it's gone. (I haven't been doing saltwater etc rinse). have been using the Utterly Smooth cream (nightly only so far) on feet.. what's leftover is already on my hands. Tired, but for me it's not a "need to go nap" tired -- it's more of a "don't have energy to do much" tired. that's a bit mental wellness too I guess. have some small creative projects waiting for me to start that won't overwhelm me with pressure to get it done. no energy or desire to cook. but family needs to eat.0
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I have to leave, ladies! It's been great chatting with everyone. Stay safe and stay strong!
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Just to elaborate more on the prescription renewal issue that might help. I've had very mild high blood pressure for years and on a BP med called Irbasarten combined with the water pill Hydrothorochlorizide for 40 years+ BP has always been constant around 130/85 so never thought much about it. But according to the nephrologist, Irbasartan is a very effective BP med when everything else in your system is functioning well. But is a drug that can actually exacerbate a condition that arises. So my dehydration began to effect the kidney and probably not as seriously had I not been taking the BP med, which contributed to the kidney decline. Interestingly I've now been off BP meds totally since last Wednesday and my BP has been better than ever. Hmmmmm.0
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@Tinazzie have always wanted to visit eastern provinces. but next big trip likely (pending covid, and treatments) will be back to Yukon to visit family. we were never able to afford to take the kids, and they are now young adults. Daughter especially wants to go. perhaps venture into Alaska to see more family if border/covid is under control. that being said, also have some extended family in NFLD now, and would like to go there. Anywhere to watch curling and hear fiddle music is good for my soul1
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@ToughAsTeal
I'm using the Udderly Smooth cream too. My feet like a baby's. Even if I never get the foot blisters they talk about I think I'll keep using it anyway.0 -
Yes, I too find the emotional, mental side hard to contain. @ToughAsTeal, the "enough already" sounds familiar - I barely get into and hear myself saying the same thing. I have started the Jon Kabat-Zinn book on Mindfulness and I must say, it has been one of the best books on the subject that I've come across. Putting his Mindfulness Masterclass on my Christmas wish list - and dropping hints at home, so let's see...0
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@fearless well isn't that curious re BP!0
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@Tinazzie I will look him up. my mind goes to the scene in Eat Pray Love movie when she is supposed to meditate and thinks time has gone by, but it's only been maybe a minute?! @Fearless - Vol Mod The Utterly Smooth is hoping to be in my Christmas stocking. scored a container of it at Juravinski pharmacy for $2 less than at Zehrs pharmacy. still have to try Peavey Mart farm supply.0
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@ToughAsTeal
Probably haven't had a BP problem in years. Doc gave it to me when I was in my early 30's, high stress career, heavy smoker....perhaps at some point, at least after I'd quit smoking and my eating and exercise habits had improved, I should have been taken off it to see if it made a difference and only back on if a problem or warning sign still existed. Oh well, we learn something new every day. Just reinforces my go to word with any medical advice these days is....why?0 -
@Fearless - Vol Mod - my BP was always less than 120 over 80. But since the surgeries and treatment and other back issues, it has been creeping up and is now more often 130 over 90 than not. GP keeps saying that's ok, but I'm finding I wake up suddenly and quite often with what seems like irregular heart beats. I've asked for and EKG and bloodwork, so waiting on those at the moment.0
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my BP always goes up just seeing the cart being wheeled over and the cuff velcro ripping un-done.1
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@Tinazzie
That's still very normal BP and not unusual for our "norm" to change as we age too. But I agree you should have concern if you're feeling some irregularity in your heart beats. That is something to be explored to be safe. Hope there isn't an issue.0 -
Welcome everyone. I’m from Vancouver and for once covid is not the main topic of discussion. So sad for all the farmers who have lost livestock due to flooding. And now the people who are hoarding food. Shameful. My markers went up so I’ve been taken off Caelxy and on garbplatin. But was told it might not be working either. Comfort care suggested. Or other drugs. They want a scan which will take weeks. A lot to take in.0
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Nice chatting ladies. I hope you both have a really good week and that all goes well with your treatments.0
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@fearless I will watch for Zejula questions. not sure I can offer much, considering no longer on it; and when I was on it at full 300mg dose, I had minimal side effects. very happy you are back this week. my thoughts as well to BC Teal sisters, and anyone especially in Abbotsford (I believe it's a regional cancer centre). Hope everyone has a good week. We all keep moving forward :-)0
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@gaylestorm
Sorry you've joined at end of todays chat but we'll catch up later. Disappointing news for you eh. Like you said, so much to absorb and think about. Let's hope, perhaps, some more positive news around the corner. It is a roller coaster, this ride we're all on.0 -
Ladies,
Sorry to say it is end of chat today. Thanks to all for joining in. Everyone please stay well, have a good week and hope to chat with you again next week....same time, same day, same station.
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@gaylestorm yes that is a lot. I hope not a long wait for scan0
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Hi @gaylestorm, just saw your note. It must be really difficult in Vancouver for sure. Sorry to hear that the current treatment hasn't gone as hoped. Yes, that is a lot to take in. But, as you always do - and do so well, one step at a time, and stay positive. Know you can!!
Hugs.0 -
THURSDAY NOVEMBER 25 and the last live online chat for the month. So WELCOME everyone.
Nothing earth shattering to share today but a few items of note.- The last of this month's Teal Teas winds up the year tonite. I understand they will pick up again in the New Year.
- It's my intent to continue this Teal Thursday session right through December and including the 23rd and the 30th.
- As advised last week, Tracy Kolwiich left OCC due to corporate reorganization. I'm now pleased to advise that Stephanie Gosselin has been promoted to Director, Programs at OCC and will be the lead on all things education and support, including OVdialogue. Stephanie was formerly Regional Director, Manitoba & Saskatchewan.
I was hoping to get out today and light house ablaze with Christmas lights but it's cold and damp and just not the best weather to be participating in an effort that's intended to be joyful. The weather report does look promising for the weekend though so hopefully then. My old farmhouse is really a story and a half little 100 year old granite stone cottage and lit up it looks like a gingerbread house. So I can't wait to get that done......the Mr. is less enthused since he's the one climbing the ladder and freezing his fingertips off while I do what i do best...direct traffic! At least he'll have a nice big mug of cocoa with a shot of something in it to warm him up when he's done.And on that note, it's 1PM ET or fast approaching that time, so welcome to everyone out there joining us today. Say hello....share what you will.....ask any questions you might have. We're all here for each other today as we are every day of the week.
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Good morning from the west coast! We have another atmospheric river coming in. I liked it better when it was called the pineapple express. Less damage done! Out here we are not talking about covid as there has been so much devastation done to many communities. People being people have started hoarding stuff and panicking. Gas is limited to 30 liters. Honestly if people would only take what they really need or stay home we would all be fine. I have not started decorating but might give it a thought.
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@Fearless - Vol Mod
SO happy to have you back!! I have missed a few chats because of the move and last Thursday the movers came and we are pretty well settled in our new condo. It feels like home. ❤️ All is well and the clinical trial is going well. How is everyone on this gloomy November day? (Hope there is sunshine somewhere!)0 -
@Taita. Congrats on your move. I am envious. We put our house on the market in oct just as things started to cool off in vancouver. didnt sell now waiting for the spring. Were you in a house before the condo? I love the thought of just locking the door and not having to worry about house stuff. However I have put a deposit on a mini aussie labdoodle dog for the spring. my husband gift for christmas.
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@gaylestorm glad you are able to ride this out. I can only imagine how difficult this has been for the folks in the thick of it. East and west coasts at the same time which is weird to say the least.0
