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!
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I am now. How is everyone doing? I was hoping that you were okay @Fearless - Vol Mod0
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@Fearless - Vol Mod I'm OK, had it confirmed on Monday that it's back to chemo. First infusion next Wed, we're trying carbo and gemzar, so my neuropathy doesn't get worse. I remember what you said about being grateful that there is something to try! Trying to stay positive.
To add another layer of concern...my 2nd covid shot is booked for Thursday, fingers crossed I will be OK to go to clinic.0 -
@gaylestorm I'm fine although had a scare on Wednesday. Since the end of my last chemo cycle and mostly related to the Lupelga shot I get on Day 10, I've been out of sorts. The usual muscle and bone aches from the shot, although a bit stronger than ever before. Then my temperature started going up and down but only a wee bit and followed by a couple of days of bad muscle spasms in my right leg and the worst headaches that would hit middle of the night. Finally Wednesday morning my temperature spiked at 100.4, although dropped down fairly quickly but suddenly behind my left ear lobe appeared a tender lump. So I panicked.....and next thing I'm in the clinic a the hospital giving blood, urine samples, lung xrays. Thankfully I'm fine. The lump did appear to be a bug bite, as my husband had suggested and actually today it's gone. All the blood work normal and same for the lung xray. One does feel a wee bit sheepish to have called wolf but it's not like me to do that....actually first time in five years I actually worried. Hence today I guess I'm not functioning on full throttle.
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@Readersmaven. I'm sorry to hear that. How long was your remission? I think its had to think about more chemo when you know exactly what that means. I found out this week that my ctscan show a new tumour and that since it has been less than 6 month since. chemo, I'm platinum resistant. However I'm in good health so am going to coast for a while and then see if i'm a candidate for a new drug study.1
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@Fearless - Vol Mod sorry to hear about your scare, as if there isn't enough to deal with, glad you had it checked out, you just never know...better to be safe!0
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@Fearless - Vol Mod You should not feel sheepish. With cancer, we feel every twitch and pain and worry. That is just the path we are on. I would think that hospital staff would not judge and be supportive. I went for a massage and on the form it ask about health questions. Because cancer was one of the questions, I got the best massage ever! So teal sisters, play that cancer card! We've earned it!1
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@Readersmaven sorry to hear you are back to chemo. I know I was disappointed to hear I had to go through it again back in December but my response has been really strong again and this upcoming cycle should be the last. Then I'll just put this all behind me and enjoy my summer and fall and maybe winter before we need to consider treatment again...and by then, who knows what choices will be out there.
BTW your protocol is the same as mine five years ago and now. Carbo and Gemcitabine....although at cycle 5 they had to switch my Carbo to Cisplatin. You won't lose your hair with the Gem. It might just thin a bit more than usual. I tolerate it very well. Really no side effects but it can be tough on the veins. If you have a port it's really easy to administer.
Good for you getting shot #2. I"m sure you'll be fine and the timing is really good to have it close to beginning of a cycle of chemo which is before you're immunity level starts to be impacted. I've had mine. Hubby had his 2nd on Tuesday and what a relief.
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@gaylestorm I finished frontline last May, I was NED until March. I did try to coast, was hoping to postpone chemo until the fall, but all areas of concern have increased in size so no point in delaying.0
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@gaylestorm you're so right. I can't count the number of times I've played the C card to my advantage. Might as well make having this disease have some value eh? But the staff at KGH were amazing. Got the red carpet treatment all the way. I only felt a bit guilty knowing how hard it's been on all of them what with the extra burden Covid has brought with it, but they never made me feel like I was wasting their time and, as my doctor said...better safe than sorry.1
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@Fearless - Vol Mod thx for the info, fingers crossed it goes well! I don't have a port, so guess we'll see what happens. I'll request one if necessary. Do you have any experience with a PICC line? I've read that can be an option.
As for my hair... it's really thick so some hair loss won't be a problem...LOL, especially as we still can't get a haircut, might be a blessing!
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@Readersmaven. I'm trying to find something positive to say, I guess, like what fearless said, you still have options. I will be thinking of you in the days to come. Do you take part in the teal tea groups?
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@Readersmaven
Many of my gals out here have had PICC lines, and many have gotten rid of them in favor of the port. I never had a PICC myself. I have a tendency to infection with anything in my veins in my arms...and the PICC can be a nuisance. It's needs to be flushed regularly (I think weekly), and you can't get it wet so bathing and swimming etc it needs a cover up. The port is so much easier. But if your veins are ok for IVs, then just make sure you let your chemo nurse know as soon as you feel any discomfort with the Gem. They either add more saline into the mix or slow down the drip or both. It can cause a burning sensation in the veins... a wee bit is quite tolerable but it can be more than that. As long as they know if it's bothering you they quickly adjust.
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I may not have the chance at more treatment. I will explore other drug options but there may not be an answer. Radiation is out, as well as more surgery. For the time being i'm hoping for the summer.0
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@gaylestorm fingers crossed that there is an option for you to try, it's really hard to stay positive with this chronic beast. It's also hard to accept that our options are limited, as you say no radiation or additional surgery.
Be sure to enjoy every day, it really is a challenging mind game and can be hard to move forward, be sure to check in here, we sure know what you're going through!1 -
I'm sorry to hear that @gaylestorm but, as everyone here knows about me, I never lose hope there might be an answer or an option....never say never. But, like you, I'm also a realist. I know my cancer is not curable. This current course will give me more time again and after that, who knows. I've developed an intolerance Carboplatin. Maybe same to Cisplatin after I get through this round. Then what? But I find if I just live my life in small chunks and not worry about what lies past each chunk I can really have a great time. Which is what I'm doing. Current chunk will get me through chemo in the next month and then three weeks of having my son home. Don't care what happens beyond that. And I can guarantee he and I and his dad will be making some super memories this trip.1
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In an effort to keep myself busy, I've made a doorway puppet show for my grandsons birthday. I usually spent time painting but brought my sewing machine out for this project
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@gaylestorm I love the puppet stage. I'ts adorable and I'm sure your grandson will be just doing a major happy dance. He's a lucky wee one to have you. And what a memory that will create. My son...33 now....still remembers the huge talking Big Bird my dad gave him when he was just 2 years old. They would sit there for hours pulling the cord to make Big Bird speak. You'd think he'd have been too young but he can even quote some of the sayings.
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@gaylestorm love the puppet theater, you're very talented! Remind me, how old is your grandson? Mine turned 6 on Monday, was he excited? Oh yes!
@Fearless - Vol Mod well said! Guess that's what makes you a wonderful moderator!
My daughter and grandson usually stop by each day, on her way home from work, for a swim in our pool, I'm grateful for these visits means a lot0 -
@Fearless - Vol Mod. well said. Yes, living in chunks is the new normal. For the past few months everytime I had bloodwork I became anxious. I never give up hope. The things in life that are now so important have changed. Living a normal day. Seeing family through facetime or when possible in person. Even just weeding the garden brings peace. and thats not something I used to like!0
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Thx for thoughts and insights today, hopefully I'll be able to provide you with an update next week after my first infusion.
Enjoy your weekend, talk soon!0 -
Ladies, I'll ask again. Did either of you participate in last night's MIndfulness session? Very curious to know how it went. It's the first I've missed so far.0
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I missed it. Just looked today and saw that it was last night. Thanks for being here today. Have a wonderful weekend and see you next week.0
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No I missed it as well. I played golf with one of my oldest friends and had to break it to her that it would likely be our last of the season.
Was it recorded? Will we be able to listen later?0 -
@gaylestorm
@Readersmaven
You both inspire with the grace with which you're both managing. Yes, Readersmaven, let us know how your first round goes and if you have any questions re the Gem, just ask. I've become a pro with that one over the past five years. @gaylestorm enjoy that grandson of yours and everything else you're doing to make life more enjoyable and peaceful. Like you, I've found so many things I took for granted now bringing me so much solace. Love it if you posted pics of your grandson's birthday. I know it will be a very special day for him.
Have a great week ladies. Take care, stay well, and visit with us again next week or as soon as you're able.
Big hugs for now,
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@gaylestorm
@Readersmaven
Just an FYI, they will be posting the video of the session on Mindfulness in the OCC video library. Usually takes a couple of days so check for it early this coming week. I used to teach the subject corporately in my old profession. It's a very valuable tool, not just a new buzz word. I practice mush of the discipline myself to relieve anxiety and stay focused on my goals.0 -
@Fearless - Vol Mod thx! They sent out an email with a link to the video, I plan on listening to it today. My husband is off with his buddies biking (motorcycle) so I'm home alone, can just focus on me!1
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Hello @Fearless - Vol Mod , @Readersmaven and @gaylestorm – sorry to have missed you all on Thursday. I didn’t just lose track of the time, but I also lost track of the day of the week! I was looking at my phone in the evening to check the weather forecast and kept wondering why I was seeing the weather for Thursday when it was still Wednesday!! Took me a while to believe that it was indeed Thursday evening! I’ll blame it on brain fog!
I did read the chat and was sorry to hear about some of the updates and the trying week that you had. Just wanted you to know that despite the hiccups on the way, all 3 of you continue to inspire others with your positive attitude. It’s great to also see the caring and creative nature shining through.
I love the puppet stage, @gaylestorm storm!!
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WELCOME.....ANOTHER THURSDAY GALS.....JUNE 24.....and it's been officially summer for three days now, although it seems it's been summer much longer. It sure kicked in early here in Ontario this year. Strange weather patterns though. Right now much of my area is in drought once again. The poor farmers..the effect on supply and pricing this year....ouch. Until I moved out to the country I never appreciated the value of a good rain.
How is everyone today? Anyone attend one of the June Teal Teas? For those in treatment or waiting for reports this past week, any news? Excited to find my son is getting his second Covid vaccine on Tuesday, so he'll be in good shape to come home for a nice long visit in July. For me, although chemo yesterday and again on Wednesday coming, my focus is on hoping they do accelerate some of Stage 2 opening here in Ontario and I can finally get this mop on top of head cut and manageable again.
And it's now 1PM and we're ready to kick off this weeks' live chat.....who'd like to say hello first?
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