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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@Fearless - Vol Mod
my mother moved in July to a retirement home in Brockville...it is her second home. As a family we always summered on the river. I will be going down to take her decorations this weekend...will pass by Kingston and wave|!!1 -
LOL, if you're on the 401, wave as you pass Napanee. I"m actually south west of it on the Lake. Of course if you take the scenic route along hwy 33 you can honk about 9km from the Glenora ferry...little ancient granite stone cottage on the south side...everyone else does LOL. May be once Covid disappears you can pit stop for coffee on your way to Brockville...a lovely town and area. Used to summer at friends on the river there too many years ago.0
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Sorry I didn't get to join in on the conversations yesterday. once a month on Thursday's I have my Gynecological Cancer Support Group Meeting through Hearth Place. Everyone take care and I hope you all have a great week.0
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December 3.....where did November go? Oh well, WELCOME to todays live chat. Glad you're able to join us. We've had a few new members in the last week or so, so hoping we might see some of them this week.
Last week we had some good discussion about staying upbeat through the holiday season; one that is a challenge for many at the best of times. I had committed to setting up a Discussion thread where we could continue to add tips, and tools, and share issues. Sorry, but the week just got away on me. Happy to continue that discussion this week as well and I will get something posted as an iterative list to build.
For those going into chemo for the first time, or those starting again due to recurrence, the PARP inhibitor I was taking for a 2018 recurrence has run its course and yesterday I started chemo again. Its been a few years since my first round so I must admit I was nervous. Happy to say all went very well. Actually got the IV in (I will be getting a chest port though) since my veins are very fragile now. Same chemo combo as the first time...Carboplatin and Gemcitabine and surprisingly no reactions or, so far, any side effects. Today full of energy thanks to the Dexamethasone but I know that will wear off and tomorrow much napping will take place. So, going in to the holidays I'm in a good and upbeat place. Confident the chemo will do it's thing and I'll be looking to a really good spring and summer in 2021. My thanks to those who reached out the other day to wish me luck....having all of you in my corner means so much.
So how is everyone else today? Any news to share? Any issues or questions to raise? Any broader topics of importance to you? Got our first real blast of snow yesterday morning but it's all gone now. How's the weather where you are?
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Hi @albertan welcome. How are you this week?0
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@Fearless - Vol Mod so glad to hear chemo went well yesterday, you know this better than most but just listen to your body, do what you need and if that means resting all day, so be it!0
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Hello All, not sure if I came to the right place for Teal Thursdays0
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I saw oncologist last week and my recent scan results are inconclusive. Ca125 has been climbing, but it's not a good marker for me, so it's all about the scan. A VERY small spot (9mm) was detected on abdominal wall and so I have another scan booked for January. Was down for a day or two but doing fine and just getting on with it!0
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I just had my surgery Monday they said they got almost all out except for some on my diaphragm and chemo will start in January. They told me the chemo but I cannot retain what the doctor say. I am so afraid of what is going to come out of their mouth I panic0
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@Stayingpositive welcome. Yes, you're in the right place. Glad to have you join us today.
@Readersmaven great to see you again and I see @cbot and @Rad with us too today as well as another new member @CynP2020.0 -
Hi @Readersmaven. I'm in a similar situation. My follow up scan is on Dec. 14.0
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Hi everyone. @Fearless - Vol Mod happy to hear your chemo went well.I have put up the Christmas tree and finished decorate the house and now I am starting to get excited for Christmas!!!0
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@Readersmaven it is all about the scan. Other than looking at trending on my CA125 I totally ignore it. And while any spot on the scan causes anxiety, yours is pretty tiny and might not even show up as remarkable when they rescan. You're doing the right thing by not letting it overwhelm your thoughts right now and just wait and see.1
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Hello
i am in the right place.Doing well today. Still lots of snow in Guelph, ON1 -
As for staying positive during holidays, my goal this year is to be content. Happy or happiness is just to big and perhaps not definable (is that a word?).
I'm thinking about what new traditions we might start, hopefully this will move thinking towards what we can do rather than what we can't.
Anyone have any suggestions for new traditions?
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@Stayingpositive so sorry to hear about your diagnosis and anxiety. Trust me, we've all been where you are. When I was first diagnosed in early 2017 I can remember how everything I was told went in one ear and out the other. You're not alone in that.
If you haven't already, go to the Ovarian Cancer Canada site and order the booklet By Your Side to down load. There is a wealth of information and support in it to guide you through your treatment journey. Just click on https://https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources and go through their site as well. Lots of stories and videos and general information you'll find helpful.
And always know our OVdialogue community is 600 + strong, all across the country and everyone is here to help support you. You are not alone.
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@cbot fingers crossed that your second scan is clear.
@Fearless - Vol Mod , yes spot is super small, and could be anything, I'm hoping that it's scaring from surgery as I had a lot of tissue removed from that area.0 -
New tradition for me will be to enjoy every moment and perhaps make an ornament with my son.2
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@Stayingpositive great idea! I'm not really crafty but decided that I'm going to wrap a gift for my 5 year old grandson in a snowman "tower". Saw the idea in pinterest and it looks easy... fingers crossed. They live close by ship will do a porch delivery.1
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@cbot definitely keeping my fingers crossed for you and hoping that scan brings you good news.
@Readersmaven you're right, it could well be scar tissue or adhesions. Strangely those don't show up well on scans. When I had my wee surgery thing back in September they found I'm full of adhesions but none have ever been picked up on my scans and apparently that's not unusual. Then again, sometimes some do show up. Go figure eh? Let's hope that's all it is.
As for new traditions for the holidays there may have been some suggested on last weeks call. You can scroll back to look. But tonite I will set up an independent Discussion thread, cut and paste holiday suggestions we had last week and this week and then leave it open for others to add their thoughts and plans.
@CynP2020 great to hear you're doing well. Not surprised you still have snow there. I'm on Lake Ontario in SE Ontario west of Kingston so get the lake effect that really moderates our weather. Since I'm not a snow bunny it suits me just fine.
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We have a new grandson as of Nov 8th. We have seen him twice because we don’t really see too many people with our bubble being just my husband and me ...and our two Yorkies
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Hi everyone! @Fearless - Vol Mod I am OK thanks and happy to hear that your first chemo went well.
@Readersmaven I know what you mean about happiness-all I can muster is gratefulness.I have been doing meditations on Calm app and happiness ones seem to be to much of a stretch...I have done calm, stress, emotions, anxiety series.It seems like I was happy before the diagnosis and now have to redifine happiness...
I had my 4th chemo Wed.last week and was really fatigued for 5-6 days and had low blood pressure symptoms.This week I learned about being high risk for breast cancer and was referred to specialist .That was tough mentally,what it means for the future, especially as I don't have family history ...I have also been approved for PARP inhibitor when my chemo is finished in Jan.
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BTW, found this the other day and thought is was an interesting take on ways to pull those positivity levers .
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@CynP2020 congratulations! A new grandson is certainly something to celebrate. I think most of us keep our bubbles small, I don't really see anyone other than those I encounter in grocery store. Not much of a social circle but I think it's so important to stay safe.
Love getting videos from my daughter, this morning it was one of my grandson going down a small hill on a snowboard, first time. Huge smile on his face at end of his "run". Gotta love it!1 -
@Fearless - Vol Mod do you get all your results from the doc.or do you have access to your med.files?Or do you get some of them on paper only?
During the Symposium some of the participants said they had access to their files and would check all their results.I considered it but then decided against it as it would be to overwhelming to me.I get some of them on paper and can always ask for more.What does everyone do with regards to that?1 -
@albertan
I am half way through my cycles. I am starting 4th cycle on Tuesday. I feel better today but was very tired and weak for the past couple weeks minus the days I had the steroids through the treatments. I have also spent the last two weeks being very emotional. Almost like I was just coming to realization that this was really happening. I would cry anytime someone even asked how I was doing. I am better this week. I will be done my treatments end of January as well. Waiting for PARP approval. CT scan already booked for Feb 10th which make makes me nervous to think.0 -
@Readersmaven
Sorry to hear about the breast cancer risk. Did that come from being assessed as BRCA positive or some other factor? Gosh, some days it's like ...don't we have enough to worry about. But chin up..they'll have a plan. Much better to know of risks and have them monitored than be surprised.
@CynP2020 Congratulations on the grand baby.....you're so lucky. Still waiting for our first one and trying with all my might not to pressure my son....although can't help but subtly hint from time to time. So glad you've been able to see him. My bubble the same as yours...me, my husband, and my blind/deaf cocker spaniel. Our son lives in Edmonton so he's not even in our bubble.0 -
@albertan take it one day at a time. Lots of challenges with this journey. I elected to have a mastectomy in September due to BRCA1+. I had breast cancer 6 years ago so this was my second mastectomy. Fortunately I'm a good healer and I recovered well.
I am currently on lynparza (parp inhibitor) and am keeping my fingers crossed that it will keep things on a good path. Hopefully as I mentioned my next scan is clear.2 -
Good afternoon everyone. I had my post chemo scan last Friday. I go tomorrow morning to my oncologist for results. Fingers and toes crossed.1
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Hi everyone - happy Teal Thursday. On my way home from an osteopathy session. Connection is spotty. Will have to catch up later. Sorry!0
