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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@jmbarrhaven
OCC will be very happy to hear of the positive impact it's had on you as it has on others. So thank you for that comment. I will pass it on.
I can say that we can count ourselves lucky to have OCC working for us. I've been working on a project at Queens University to build a support model for gynecological cancer survivors post primary treatment. Our scope therefore is broader than just OVC. And after three years of our scoping issues and having just run the first set of focus groups to review a draft guide we've built I've been shocked at how the other cancers, uterine, cervical etc. have nothing like an OCC to support them. Yes, there are groups out there but they are very generic. Not focused in on the specific disease like OCC is. We're so fortunate to have them to not only drive change in how our disease is priortized, in moving research agendas forward, but also for keeping us so well informed on what's going on. Add to that providing us with these platforms for OVd and Teal Teas so we can create sustainable peer support groups is so helpful.0 -
@Fearless - Vol Mod that is great news about your ca 125 going down. Makes putting up with fatigue worth it. And what better that knowing what you are facing with a injectable due before surgery. Big stride forward.And not to brag but I’m in Victoria and the sun is shining.0
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@gaylestorm how has your energy level been?0
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Interesting there seems to be no real consistency to follow up. I was talking to another survivor recently and she was telling me that she's on another PARP (I think Olaparib) and she's getting calls from the pharmaceutical company directly checking in on her progress.
Wow on the new protocol in the US. Hate to say it but they always seem to be one step ahead of us. Of course they have larger scale to invest in and don't seem as rigid as us when it comes to approving anything new. At the least though we learn from their experience. But that dye would be of such benefit. I know when I had surgery my surgeon was clear that he'd removed whatever was visible to the eye but there could be underlying cells left. Which was the case with me.
Always something new for us, and yes @jmbarrhaven lots of progress. I do believe we are living longer and better lives with advances in just the past four or five years and more to come.
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Energy is down to zero. Having said that I have managed to shop quickly in one store with sisters. Amazing where I can find energy when motivated. Lol. I’m having a kid oriented Xmas party with only kid food. It will be easy to do as everyone will do all the work as I stretch out and relax. I’ve also order a precooked Xmas dinner that just needs to be reheated.0
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@Fearless - Vol Mod exactly same with me. Knew there was microscopic left behind so recurrence was anticipated.Ooooo a pocket of sunshine with verrrry dark clouds coming from the west. Gusts of wind. Perfect for afternoon nap!0
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@gaylestorm
Glad to have you with us...energized or not LOL. Nothing like some retail therapy to get the juices flowing for sure. I do find myself more lethargic than anything. Once I slap my self a couple of times and get up and doing something I do find my energy returns to some extent.
Great ideas on the kid themed party. Pizza...hot dogs....and lots of sugary stuff ! Mmmmm.
I was going to order a full Christmas dinner to pick and reheat myself. One of the better hotel restaurants does an amazing spread including the full turkey and serves 8 to 10. But my husband and my son are determined to play chef this year. I thought they'd be delighted to be off the hook but they were actually disappointed. So I'll just keep an extra eye out on what they're doing and all should be fine. My step son and his family have volunteered to be the clean up crew. So I just get to play hostess with my feet up and a little bell to ring when I need something.0 -
@i love the kid food Christmas food idea! I would like to switch it up from doing the turkey big meal, but have been veto'd.0
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@Annie1950
I see you just popped in. Back from your travels? Anything to share before we shut down for today? Hope al is well.0 -
Have a good week everyone😀🌻0
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Well ladies it's past 2pm and I"m fast fading today so time for me to say good bye for this week.
@jmbarrhaven I hope the supplements fix the anemia and you settle into the Zejula better.
@ToughAsTeal take care of that foot, and hope we both don't get overwhelmed with side effects from our common treatment. So far so good for both of us compared to others I've heard from.
@gaylestorm Enjoy your shopping expeditions. I vote getting out the credit cards when you're feeling least energetic. You can call them your new treatment protocol.
Hope to "see' you all again next week. Same time, same place ! In the meantime stay well.
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Hoo ha.....three weeks to Christmas! IT'S THURSDAY DECEMBER 9 AND TIME TO ENGAGE AGAIN.
We had our first real smattering of snow yesterday and, while the roads are nice and clear, it has stuck to the trees and ground and just sparkling away like diamonds in the morning sun today. If only we had this scene on Christmas Eve and Christmas Day !
How is everyone today? I had a wee bout of side effects from my chemo a week ago. It seems, with me, the Caelyx Avastin combo kicks the side effects in later than it did with Carbo/Gem. A full seven days before I felt anything other than the usual fatigue and a bit of a sore throat. But as fast as the effects hit, they're pretty well gone Oh, to have that be the case every month. I'll be optimistic I can ride this wave of new chemo better than I had expected. Next chemo on Wednesday. Just a quick round of Avastin. Then my oncologist delayed the start of cycle 3 from December 29 to January 5 so I could fully enjoy the holidays and having my son home. So today I'm feeling pretty lucky to be here, feeling as well as I do, and be enjoying the anticipation of the holidays and having my family all together under one roof for the first time in five years. Can't ask for more than that! Well, yes...a puppy but practicality says I should shelve that idea.
And while I celebrate Christmas, there are certainly a raft of celebrations to include everyone this month, no matter your cultural or religious background. Here's a list according to the Interfaith Calendar.Dec. 6: Saint Nicholas Day — Christian - This holiday honors the birth of Saint Nicholas, the saint who serves as a role model for gift-giving .
Dec. 7 to 14: Hanukkah — Judaism - This is the eight-day Jewish festival of lights, which celebrates the Maccabean revolt in Egypt.
Dec. 8: Immaculate Conception — Catholic - Catholics celebrate the day of Immaculate Conception to honor his mother Mary, who they say was preserved from original sin for her entire life.
Dec. 8: Rohatsu (Bodhi Day) — Buddhist - This holiday celebrates the historical Buddha’s decision and vow to sit under the Bodhi tree until he reached spiritual enlightenment.
Dec. 12: Advent Fast begins — Orthodox Christian - . The holiday is celebrated by believers lighting Advent candles, hanging wreaths and attending church ceremonies,
Dec. 12: Feast Day of Our Lady of Guadalupe — Catholic - This is a primarily celebrated by Mexicans and Americans of Mexican descent that honors the reported appearance of the Virgin Mary in Mexico City,
Dec. 16: Posadas Navidenas — Christian - This is a primarily Hispanic Christian holiday that commends Mary and Joseph’s journey to Bethlehem to give birth to Jesus
Dec. 21: Solstice — Wicca/Pagan - Solstice is the point in the year when the earth is farthest away from the sun. Pagans and Wicca believers will celebrate that event through Yule, in which believers also honor “the winter-born king, symbolized by the rebirth of the sun,” It was originally a Christian celebration to honor Jesus.
Dec. 23: Mawlid el-Nabi — Islam - This holiday honors the birth of the Prophet Muhammad, who founded Islam.
Dec. 25: Christmas — Christian - A holiday that celebrates the birth of Jesus Christ.
Dec. 26: Zarathosht Diso (Death of Prophet Zarathustra) — Zoroastrian -Unlike many of the other holidays in the month, Zoroastrians honor the death of their prophet, Zarathustra, who founded Zoroastrianism, one of the world’s oldest monotheistic religions.
Dec. 27: Feast of the Holy Family — Catholic -To honor Jesus, Mary and Joseph,
Dec. 28: Holy Innocents Day — Christian - To honor the deaths of children killed by King Herod, who was attempting to kill Jesus
Dec. 31: Watch Night — Christian -To thank God for the safety they received during the year,
So on that celebratory reminder, let's chat. Anyone else a holiday junkie like me? Or despite so much to celebrate, the holidays can be a stressful time. What are you dolng to find your Zen?
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Hello Fearless!
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Hey there @BeamBlossom
Glad you could join us today. How are you? Any changes since we last connected?
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@Fearless - Vol Mod wow! That is wonderful account of December! For our family- we went into Jan 14 for Ukrainian New years. As a kid, we would keep our tree up, Christmas lights on..and we moaned to our parents to ppplease! Why cant we take the decorations down! Now, that they are no longer with us, my cousins and I all laugh and reminisce and yes, keep everything up til the 14th!I am currently in recliner at Juravinski, so just wanted to pop in and hope everyone has had a good week....and will have a good week!😀🌻0
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Good morning everyone. On the west coast the sun is trying to shine. No snow here right now. Thank. you for posting all the celebrations this month. Makes me feel like i want to celebrate each and every one!0
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The changes are happening so fast for me I can't hardly keep up. I had a CT 2 weeks ago to check for a blood clot because I had this nagging pain which I though was a muscle problem in my shoulder. The good news, no blood clot, the bad news, cancer metastisized to my rib. So, now I'm going in for more radiation the week before Christmas, it is a small spot so will take only 2 sessions. The oncologists tell me the Caelyx/Avastin would take care of it but it would take time, with the radiation they can get it all gone quickly.
My oncologist has scheduled a CT for me next week as well to check that this treatment regime is working and ensure there is no progression. So, I don't have a date for my next cycle I think she is waiting to see what the CT shows before proceeding.0 -
@ToughAsTeal
I assume "recliner" means you're in chemo. The double whammy today (Caelyx/Avastin) or just the Avastin? Hope it goes well. Amd so far, as we've compared side effects I"m doing much better than I been told to expect. Still no mouth sores or rashes to contend with and I'm now past cycle 2. Glad you're able to pop in but if you get dozy, like we all usually do, feel free to nod off....we won't hear you snoring LOL0 -
@BeamBlossom. that is alot to take in. Ive never had radiation. Are there side effects to it or just a general tiredness. Its good that they can schedule another ct scan so quickly. In Bc the wait is 2 months unless dr request urgent and then one month. I think it can be sped up more but drs can only use that card so many times.0
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@gaylestorm
Howdy again. Yes, I thought the calendar might be nice to remember there's much more than just Christmas to celebrate this month. Glad ToughAsTeal reminded us about Ukrainian New Year in January. I so remember friends celebrating that when I was growing up. Always managed to mooch a seat at the feast....oh, the perogies!0 -
@Gaylestorm - this is my 3rd time getting radiation as I had mets to the sacrum and the skull which were treated in September. The side effects depend on where they are radiating and how much. The sacrum was tough, my pelvic girdle muscles are just now recovering. The skull radiation causes nausea which was intense, but it only lasted a week.
Mets to the bone only happen in 3% of ovc cases, so I am getting a LOT of attention from my health care team.0 -
@BeamBlossom
I'm assuming no big side effects from the radiation to spoil the holidays with your family? Regardless, so great it can do what would take the Caelyx Avastin a long while to effect. I'm constantly amazed at the "tools" our doctors have in hand when needed. Do hope the scan shows the chemo has been working though. It would be a nice Christmas present to get rid of the lesion on the rib and hear good news on the rest, wouldn't it.
BTW thanks for posting that info on the neuropathy Discussion topic. I' think I'll steer clear of the one but will try that oil. I think you had mentioned it before and I forgot about it. My foot neuropathy has really gotten worse, especially since the gout, so willing to try anything to restore some normal feeling.0 -
@Fearless - I wish the radiation was the week following Christmas because there is a risk that the pain will intensify, which will make lifting a problem. Based on my previous experience, I expect that will happen, it injures the bone and then the bone has to heal. We'll see how it goes, I'm recruiting turkey lifters for the 25th!
The Frankensense and Myrrh balm I get it from Amazon, search for it under 3 Wise Men, that manufacturer is in the US. I buy 3 jars at a time. Be patient with it, it took a few months of nightly use to start to improve my neuropathy and then improvement continues as I continued to use it, it took about a year to take away most of the neuropathy.. It does a double duty as we are supposed to be keeping our feet moisturized while on Caelyx/Avastin, so it does double duty. It is a coconut oil base with few chemicals added.0 -
Interesting that metastasis to the bone is only about 3%. I would have thought higher. On the bright side, one less thing to consume my worries since likelihood is so low. Then again that's' the approach i took to OVC and look where that got me LOL.0
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@Fearless - Maybe you put the Frankensense and Myrrh on your Christmas list! That would evoke some interesting responses lol!0
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Quick update on OCC structure. Stephanie Gosselin, who was the Regional Director for Man/Sask, has been promoted to Director Programs and OVd will become part of her portfolio. Steph is a great gal and I look forward to working with her moving forward. She's also committed to continuing the Teal Tea format that has proven so successful in the new year. I understand participation is not huge but content of conversations is very robust and valuable. In fact, I think I may check them out in the new year myself.0
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I agree @Fearless - Vol Mod. I least expected cancer when it came and bit me in the ass. Why would I expect this when my grandparents and parents lived well into the 80's. I think the hardest part was after chemo and in hospital post operatively being questioned about if i used a wheelchair or walker at home. I was horrified that the staff had no idea who i had been before cancer. Cycling several kms a week, swimming pickleball etc.0
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@BeamBlossom what a great idea. My son was just asking for a suggestions list for me for Christmas. Think I'll just add that in without explanation and see what happens LOL.0
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@Gaylestorm - I was a keen cyclist too! And both my Grandmother's lived to be 97, my Mom died last year at 88 yo. This disease hits anyone at anytime it seems, it is unfair and hard to get used to a new normal. I was always a great planner and planning for the future was a big deal to me, What i find hardest is wondering daily how much future is there now? How do I plan?0
