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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@gaylestorm goes to show everyone just makes assumptions based on preconceived notion. Still, around the time we were diagnosed, this was considered an 'old lady" disease. But cripes, when I was admitted a month ago with the failing kidneys the young gal admitting me spent far too much time asking about my thoughts about being on dialysis long term and if I had an episode while there would I want to be resuscitated. Sheesh, not exactly comforting!.0
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@Fearless- So glad you came through all that unscathed.0
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@BeamBlossom. It is tough to plan. i try to plan something every morning as my kids always ask want i'm doing but i'm quick to change or not do anything But last summer i didnt think i would ever be able to ride again. I surprised myself and bought a wonderful ebike and rode it home from the store, crying with joy all the way home. I ve only rode the bike a few times but the joy it brought was well worth it.. For me plan. then modify when needed.
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@BeamBlossom the unknown is one of the most challenging issues with this this disease. A real prognosis seems highly difficult to deliver with any accuracy given so many factors weigh in to our prospects for longevity. For me, I've learned to manage my life in 3 - 6 month increments. Even if the worst arises that time period is generally still achievable. So today the last of my milestones from my last plan is my son arriving on the 17th. And I'm already planning ahead to his next trip home in late May/early June...my next six month window. Beyond that, don't give a dang.
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@gaylestorm
That's a great idea! I got out on my bike a bit last August. I know the day will come when I will have to give up riding. One downside of radiation is that it thins the bones, I have to discuss with the radiation oncologist about the condition of my sacrum, that's a bad bone to break, full of nerves and can't be set, so I'm not sure how cycling will fit in my future.
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And I'm planning for a family christmas together and spoiling the grandkids. After that I dont care. Or will make a new plan.0
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@Fearless - Vol Mod
That's a good moto to go in 6 month increments, I'm going year by year. I remind myself that the reason our prognosis is so hard to nail down is because there are so many more treatments now and they are increasing life spans. So, "I don't know" is better than a finite short term prognosis.0 -
@BeamBlossom It sounds trite but I truly believe where there's a will, there's a way. What about 'graduating' to a tricycle? Great exercise still but much less chance of a crash.0
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@Fearless - Vol Mod
Yes, I'd thought of the tricycle too, I will wait to see what my doc advises, maybe by next summer it fill be fully healed, I don't know. Ihave the winter to build up my walking which is down from 5kms a day to 4 blocks. We'll see.0 -
Just want to pop in and say hi ladies, sorry I am at work,just want to say all the best to anyone in treatment and I do read all the comments later,great weekend to all..0
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Our hour goes by quickly! Thanks for a nice chat ladies, I appreciate the shared wisdom!0
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Well ladies, I hear my TV and NCIS closing music so it must be time to say goodbye. Anyone programmed in the new Sex in the City reboot tonite...two back to back episodes. Loved the series, hated the movies. Jury is out on this one but it will be interesting to see how they treat three aging NY chicks. Who knows, perhaps they'll make gray hair and wrinkles cool LOL.
In the meantime, @BeamBlossom good luck with the radiation and the scan. Here's hoping, eh?
@ToughAsTeal hope the chemo goes well and your side effects as limited as mine have been.
@Gaylestorm keep on, keeping on gal and enjoy those grandkids of yours.
Until next week.......
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Chemo was delayed 2hrs for staffing shortage. Caelyx and Avastin. Treatment itself was just over 1.5 hrs. Tired yet “awake” maybe from dexamethazone. So I am reading through comments/suggestions on “planning” 3 months, 6 months, a year (what you all have found works for you) and I can’t tell you how much I also needed to read this. I have found myself a bit paralyzed emotionally the last few months. I am capable, realistic, resilient and hate how I haven’t been able to pull myself together. Then I read your posts. Modifying the plan as needed. I had strong visual of @gaylestorm on ebike. It was red, at least in my imagination😀 So, my thanks to all of you. You have given me something I can try to move forward with.1
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HAPPY THURSDAY DECEMBER 16 AND ANOTHER LIVE ONLINE CHAT WITH OR WITHOUT ME TODAY.
Yes, I'm posting this greeting early today because of uncertainty with power and internet this afternoon. Last Saturday we, along with other areas in Ontario and east, were hit with a major windstorm with gusts in the 120km/hr range. Power and internet out all over ...except for me. For some reason while we watched our hundred year old trees bend and twist, heard the windows rattle and shake, and saw the water in the toilets actually ripple with waves, that was the extent for us thankfully. However we've just had a weather advisory saying we can expect the same and likely worse today. So far so good but I could be affected at any point in the day in which case I won't be able to chat today.
SO, to anyone checking in at 1pm, please go ahead without me if I'm not there to greet you today.
And with all of that said, I will be back in action next Thursday with my personal wishes then to all for a wonderful holiday. I know for many, including myself, plans are rapidly changing with the Omicron variant upon us. Disappointing as it may be, I prefer to dwell on the good...for me, Cycle 2 completed yesterday and free until Cycle 3 in January, CA125 down another 800 points so at mid 2000's compared to where I started two months ago at 7500, hubby and I both have our boosters done over two weeks ago, now tracking to a longer prognosis than I was given in November, and, knock on wood, so far my family and friends are all healthy. So much to be grateful for makes the disappointments seem so small.But I do have an ask of each of you today and those who follow our chats. This is, for many, a difficult time of year emotionally. Some may reach out on OVdialogue, even for just a word of hope or encouragement, or to know someone is listening. Please make an effort to Comment, even if only to say "I care", "I'm listening", or "what can I do to help you". Just knowing there are people out there who get it, who care, who are listening can mean so much to someone who may be alone this year and battling this disease on top of everything else. I know I can count on all of you.So, if it's IPM ET, get at gals. Hopefully I will be there to join you today and if not, I'll "see" you all next Thursday.
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Happy windy Thursday!0
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Hello there!0
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How are you doing with treatments?0
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Sorry I haven't been able to say hello the last of couple of Thursdays, it's been a busy little while. Glad to see you on the chat today, @Fearless - Vol Mod and @ToughAsTeal.0
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Good afternoon ladies...very windy but very warm.0
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Great to hear all your positive news, @Fearless - Vol Mod. The perfect path to the holidays and the new year!0
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@ToughAsTeal, how are you doing? When do you go in for your next treatment?
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@fearless And Just Like That has made Peleton stocks dive apparently! Lol. Watched episodes 1&2 because you mentioned it, and what a great mental escape. Hand-Foot issues post chemo. Hands, i can cope with. feet - like walking on massive blisters on raw bone. 95% of my day is in recliner. I write alphabet with my feet in the air to keep them moving. Uttering lots of colourful "ouches" when I must walk.0
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Here ladies, but on and off. The winds have started so my internet keeps getting interrupted. But I'll stick around as long as I'm able to connect.
Nice to see you gals with us today....I had expected most to be out doing final shopping since next week the stores will either be a zoo with last minuters or like a ghost town because everyone is afraid of Omicron and sticking to home. I am testing the waters later, if it's safe to drive. I've a few items I have to pick up...delivery not an option. So I'll be very carefully masking, keeping distance and going to the section where my item is, running to self checkout, and back out the door. Bet my husband I can get the coffee grinder for my son in less than 5 minutes, in and out.0 -
Happy Thursday! @Fearless - Vol Mod We too have the wind warning. Last Saturday was crazy! Our youngest granddaughter's first birth day and all the festive planters were on the porch ready to greet guests until the wind picked them up and threw them around mostly destroying them. They were not light but the wind was fierce. Hopefully today is not as bad!
Wrapping Christmas gifts as we speak. My doctors offered me next week's treatment off, but after lots of thought I declined. So far we are seeing progress on reduction of tumours and with a CT Scan on the 29th, I am going for maximum benefit. Hopefully not too tired at Christmas.0 -
@Fearless - Vol Mod I hear your comments about the season and the emotional toll it can take. Even the strongest women and their families have moments and the support we can provide to each other is so important. Thank you for the reminder.
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oh wow @ToughAsTeal I'm so sorry your feet have borne the brunt of the Caelyx and so badly. Is there nothing they can do to help speed the healing? For me so far so good on the skin blister front. I"ve had nothing on either my hands or feet and finished Cycle 2 of Caelyx two weeks ago so I would have expected something by now. But so far, only a real sore throat that comes and goes, hoarseness in my voice and the neuropathy in my feet worse but bearable. Awful time yesterday though. Woke with a barometric migraine that was so bad it was giving my dry heaves. Dragged myself into chemo cause I was determined to get that done before Tyler arrives tomorrow. Thankfully bed as soon as I got home and 2 rounds of Tylenol and it was gone this morning. But missed an entire day of work to get ready for Christmas. Oh well...."s" happens doesn't it. Important thing...my son is coming home. Everything else...who cares.
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oh and @ToughAsTeal episode 3 of Just Like That is on tonite. Yes, the impact on the Peleton stock was hilarious. But so is the fact they pulled that commercial together (if you've seen it) featuring Chris Noth in a matter of a day to counter the effect on their stock.
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@Tinazzie my next tx is 23rd. Avastin only.Hands peeling, red/raw and that plus feet i am just annoyed because i have stuff to do. Stuff i WANT to do.0
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Yes, definitely a good reminder...compassion and support go a long way. Thank you.
@ToughAsTeal, sorry to hear about all the post chemo issues. But the recliner and good shows are not too bad given the weather we've been having! Sometimes we do expect so much more from ourselves than other people and that can be hard.
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@fearless i get those darn weather headaches too. So exciting for you your son coming home!Am going to attempt some gift wrapping, see how I manage. Determined to not revert to gift bags.1
