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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
Hi @Basj43 and welcome to our weekly chat room. Did my response to your question about the currency of posts on our site help? You are new to the community. If you re comfortable, please tell us a bit about yourself....or is there anything specific you'd like help with? Right now it's just you and me chatting. Others tend to join at various times during the chat so I expect we'll see a few more members signing in shortly.0
-
Is there a chat today?0
-
Hello!
Here for a quick check-in. Have roofers working on our roof after countless shingles blown off during the last storm.
G
@Fealess, great to hear how well you're feeling and just how well you are doing with the latest rounds of treatments. Big high-five to you my friend!!
@Basj43 - Hello and welcome to the chat!
0 -
@Basj43 just an FYI, but in order to see comments as they are posted during the chat you can do one of two things. If you see a little black box pop up at the lower left of your screen that's a notification of a new comment having been posted by someone. You can click on the black box to refresh this discussion and see the comments. If the box disappears too quickly then you can go up to the icon that is notifications beside your name at the top right of the screen. Open it and click on the newest notification to refresh your screen.0
-
Oh yes, hi, I am new. I was diagnosed in December, waited two months for surgery and am 3 weeks post op now. Just saw the surgical pathology report and seems my staging is high grade serous 3c. For me it was all so very impersonal. I read the results of the CT in December alone in the waiting room. I never spoke with nor met the oncologist who was to do my surgery til the moment I walked into the operating room, never saw her again. I go for my post op on Tuesday, hopefully with the oncologist who did the surgery, I guess to tell me when chemo starts. It's all a little scary. I've read a lot about chemo and I'm guessing be on carboplatin and paclitaxel. Not so great side effects, it's worrisome.0
-
@Tinazzie
How wonderful to hear from you. It's been a while or does it just seem like that. Thanks for the encouragement. I'm now in my sixth year of treatment and some days it seems like forever. And to be feeling as good as I do makes it all worthwhile.
Outside of shingle replacements how are you faring these days?0 -
Was a bit disappointed that the speaker series for this month had to be cancelled but, yes, so glad that it has been re-scheduled to April! Also looking forward to next month's speaker series - the fear of recurrence. I'm sure most of us can relate to that in one way or another. I have now been put on an "every 6-month check up", with no blood work or scans, unless other factors or symptoms determine the need for it. I'm very uncomfortable with this 'step-up' as my family doctor described it when I mentioned it to her. I really don't know what the likely symptoms might be given that so much of my insides are now removed with the hysterectomy.0
-
@Basj43 you share a common type and stage with me, and many of our members. But i'm so sorry to hear how alone you've been through diagnosis and surgery. Are you close to a cancer centre or are you being treated in a regular local /regional hospital? Generally in the cancer centres you get at least a bit more connection to those who are tasked with your care. But even those models differ by province and, medical resources have been stretched thin thanks to Covid. I have heard some gals having had surgeries or treatments postponed once and sometimes twice. Regardless, welcome to our community here. We are over 1000 strong across the country so you're never alone here.
If you haven't already, do order the booklet By Your Side from Ovarian Cancer Canada. It's an excellent guide and resource that takes you through all stages of primary treatment. Many find it helpful in preparing questions for when they meet with their cancer care team. And don't let chemo scare you. Lots of us here will be happy to share experiences and tips to help you through it. So often we hear only the "horror" stories but remember that we all respond differently to treatment and have differing tolerances for discomfort. For me, original chemo was Carboplatin and Gemcitabine and I pretty well coasted through it. In fact, am now in my 6th year of treatment (I'm one of the unlucky to have chronic recurrent cancer) and I"ve coasted through just about everything so far.0 -
@Basj43 PS: you can order By Your Side at https://ovariancanada.org/living-with-ovarian-cancer/support-resources. It comes in hard and soft copy. I have both as do many of us. Also the OCC website is just chock full of information you'll find very helpful. Everything from survivor stories to the latest news of developments in treatment to great videos on a number of key subjects you'll find very helpful.0
-
Good morning everyone. Welcome @Basj43 i too am stage 3c high grade. I was on carboplatin and abraxane after i had a allergic reaction to its sister drug. The first 3 chemo around the 4th day i got a bit sick but it lasted like 4 days then i bounced back. I did pretty well on the chemo.0
-
Thank you for the warm welcome! My Friend actually ordered the by my side booklet several weeks ago but we have never received it in the mail nor by email. I am in Ottawa and going to the Shirley Greenberg center which is supposed to be pretty good. I'm not sure how long my appointment time will be, But I know I will have many questions.0
-
@Basj43, so sorry to hear about the very impersonal treatment you have received to date. Different provinces and also different cancer centers are different in their treatment protocols. I hope the connection with your gyne onc team improves now that the covid situations are a bit more under control. But, as @Fearless - Vol Mod mentioned, you have a great group of support sisters and resources here to help you, so please feel free to reach out at any time.1
-
Hi all. Just back from round 5. Needing to take some anti nausea already. So I will read and catch up next week. Stay well0
-
@Fearless - Vol Mod how was the wedding. Glad to hear your doing better this week. I was a bit sluggish this week. Still having issues sleeping some days its like so tired during the day.0
-
Hello @Eileen! @ToughAsTeal so glad you popped in and yes, please do take the anti nausea and get some rest. Hope you have a good rest of the week.
0 -
@tinazzie , yes I was surprised to hear they'd had to postpone last night's presentation. Something must have come up either for the speaker or, as I find is usually the case, technology LOL. But that one and the one next month are both really great topics.
LOL, here I am envying you getting moved onto a "surveillance only" schedule and there you are worrying it might not be sufficient. Honestly though, just keep those check-ins in your calendar so you don't fall off anyone's radar but just monitor yourself closely. Your uteris and tubes and ovaries etc may be gone but your colon is still there and one of the most frequent signs of our cancer or a recurrence is changing bowel habits/usual bloating. If you start experiencing a change that is persistent, then reach out to your cancer care team for a follow up. That's how we found my first recurrence a year and half after I finished primary treatment. When I mentioned the symptoms that prompted a CA125, that prompted a second a month later and when it was above normal and jumped even higher on the second check that prompted a CT which confirmed my recurrence and put me into treatment. So just stay atuned to what isn't normal for you and keep a journal of what happens, and when. But hopefully you're going to like most of friends and next I'll be hearing you're celebrating your fifth anniversary still cancer free.0 -
Hi and welcome back @Eileen. I'm embarrassed to say I missed the wedding. I put an alarm on my iphone to remind me to boot up zoom at the appointed time but put the alarm in for the wrong day. So I slept through the nuptials. Then realized I had actually put the calendar entry on the Saturday a week after the wedding. For some reason I wasn't intended to be "there" I guess but her mom, my BFF, is sending the video.
Sorry you're still feeling the pangs of fatigue. That seems to be on the one effect that is so common among us and the one that's the hardest to recover from. I'd suggest the #1 common complaint.0 -
Oh and @Eileen....#2 complaint.....insomnia. Many of us have gotten used to communicating via text and email at around 3am since we're all wide awake at that hour and having challenges getting back to sleep. Probably not the smartest thing to do when you're trying to retrain your body to keep to a better sleep pattern but better than getting up and vacuuming like I used to do. LOL.1
-
Oh no so sorry @Fearless - Vol Mod. Hope you get the video soon. Lack of sleep these days. I switched my zejula to 230pm and its has been a bit better sleep wise but i guess i am worried about my ct. Its coming up march 1. I go in today for my cbc blood work today. Been having a bit of yellow discharge the last 3 days. Went in for a swap will know in a few days.0
-
@ToughAsTeal thanks for trying to be here but best to just take care of you. Just finished end of cycle 4 yesterday and I have found that cycle to have had more an effect on my stomach than usual. More just queasiness but for the first time I've started taking the Olazapine I"ve had sitting in my pill drawer forever. It seems to knock out the queasiness quite efficiently for me.0
-
Yes it seems like 4am is my time to fall asleep. I go to bed everyday at 1030 pm ha by 4am nope still awake. Ive tried melatonin which that gives me vivid dreams. Seems like i am still awake with those dreams. Benadryl night time. I just get so groggy and exhaust next day. Just tried gravol to help knock me out. Helps a bit. But i dont want to rely on pills to help fall asleep because your system will just get use to it and u wont be able to fall asleep naturally.0
-
Thanks @Fearless - Vol Mod, that's really helpful information. And yes, I do feel guilty sometimes for this feeling of always looking over my shoulder. I think it's probably due to being diagnosed with breast cancer at the same time as my OC and yup, now the bowel issues as you mention. I am keeping a journal and have also been referred to a general surgeon for an internal exam to better understand what my stool blockage issues are. So...will stay positive - and also vigilant!0
-
@Eileen, worry can get the best of you and those of us with this disease will agree it's hard not to worry, even at the best of times. And that can definitely impact your sleep patterns. Have you tried any mindfulness strategies or done any meditation? Many of us have found those techniques really helpful in clearing your head of worrisome thoughts. If you go through the OCC website videos I think there may be one or two on the subject, either from a Speaker Series session or as a topic from the one of the last Symposiums.0
-
Hope you feel better soon @ToughAsTeal. Get some much needed rest.0
-
No @Fearless - Vol Mod i havent tried. My sister sends me some video links for the que che. I am definetly spelling that wrong. I will look at those thanks. Got my books by you side in the mail finally. Much better than trying to read them on your phone. @Tinazzie yes i know its hard to stay positive most days but we are all here for you and you can reach out to me as well for support.0
-
Thanks Eileen for the heads up. Sorry, I'm sure I'm not responding where I should, I'm a little lost lol0
-
Well lovely ladies, it's 2PM and time to sign off for another week. Time sure does fly in these chats but I hope you all get something of value....a suggestion you might want to try, an ear that just listened when you thought no one would, encouragement when you needed it most....and most of all new friends.
We'll be back again next Thursday but in the meantime reach out if there's anything we can to do help in the meantime. And to our newer chat participants, if you need any help navigating this site don't hesitate to ask for help either in a new post or message me directly.
Have a wonderful week everyone and sending thoughts and prayers to those in the Ukraine for their safety and well being.
0 -
No i found drinking 4 bottles of water daily really helps i did extremely well on the chemo. Those dexamenson pills after u stop taking them on the 3rd day next day u get very sore muscles but it only last for few days each day it gets better. I did get a more fatigued towards the end but never lost my appetite after the 3rd round.0
