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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Have a great week everyone😀
keep moving forward!1 -
JUNE THE 2nd....and time for another online live chat. Welcome.
I've updated the events list on the homepage with everything I have for June or requires a future placeholder. Like last month I'll keep adding as new events come to my attention. .
How has everyone been this past week? I do hope well or progressing favorably and that any snags in treatment have been of short duration. For me, with the help of some major anxiety meds my bad streak of BP getting in the way of my last 4 Avastin treatments is over. Finally we seem to have my BP under control and yesterday I got my Day 1 Caelyx Avastin double whammy to kick off cycle 8. Gosh I can remember dreading the chemo room and the treatments and now it's just the opposite. For me there's a sense of security having that attachment to the clinic and doctors and nurses. I think that's why we feel somewhat lost when treatment is over. It's almost as if we've been cut off from our life line.
Very happy to say two of our ladies have expressed interest in joining our Peer Support Volunteer Team. I'll be talking to the over the next week. If anyone else is interested please do let me know.
Well gals, it's heading to 1PM and ready to start today's chat. Who's with us today....say hello....let us know what you're up to....anything new to share......we're "listening"0 -
Happy Thursday
Glad for cooler weather. Had chemo yesterday and very tired. Managing normal post chemo stuff.0 -
@ToughAsTeal but it must be nice being closer to home now. I had mine yesterday too and know the minute this is over I'll put my head down and be out like a light. Then again no sleep last night doesn't help. I was good for two Real Housewives episodes and three episodes of Strange Things. Must have been the Dex.0
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Question for anyone out there. How are the mosquitos out your way? We've had years of no black flies and minimal mosquitos thanks to the cool breeze off Lake Ontario. This year, still no black flies but I swear the mosquitos are the size of helicopters and have acquired a taste for blood laced with chemo.0
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Hey @Tinazzie great to have you with us. What's new? How are you feeling?0
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@fearless so good to read BP is under control! I have been needing to take Percocet more frequently lately for pain. Just takes the edge off so I can actually do stuff around the house.0
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@ToughAsTeal where is the pain? I have a mini supply of hydromorphone if I need it but fortunately unless I get a gout attack I haven't needed them. All those pain killers are so darn constipating I don't need that added issue.0
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Hi Everyone, Blood work shows my CA 124 is down to 83! But my liver, platelets and hemoglobin are struggling. I am to go ahead with what is hopefully my last chemo treatment tomorrow, though there could be one more end of June. I did not recover well from the last one and still have muscle weakness, fatigue which usually corrects itself by now so I expect the next few weeks will be tough. Still the end is in sight and prognosis looks pretty good considering
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Sorry it’s been so long since I’ve been online for the chat. I do check in later have tried to keep abreast of all that’s happening in our Teal Sisters world!
It feels like I have always had medical or other appointments at this time. As well as some days, I was just not up to it – likely the yearning for an afternoon siesta (it’s 2pm here in the Maritimes). I seem to be needing an afternoon nap more and more some days.
@Fearless - Vol Mod, not too many black flies out here. Mosquitos are plenty - but mostly the little ones!0 -
Havnt been outside much to test mosquitos! In part because of the heat, and in part because we are completely regrading our lawns front and back and there is no where to go sit outside!0
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I have been moving back and forth between Hamilton and Ottawa lately and have seen a few annoying mozzies but nothing too scary yet.0
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@mjmck21 that' is great news your CA is down again. Not surprised at the struggles though. The chemo usually has some effect on something. My first time it was my WBC's. We took care of that with booster shots. Then the last chemo session my RBCs were so bad I needed a transfusion. Last tme keeping my potassium and magnesium up were challenges. And just before that it was hydration and the effect it had on my kidneys. All manageable but a nuisance for sure. And as for the post treatment effects, you've got the right attitude. Just focus on it all being over soon.0
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Hello Ladies, only my second time on here. I get confused with the time difference or I just plain forget. I don't know if that will e er change. It has gotten better but I'm still not to where I was before chemo. It's a little frustrating but what can you do. I hope everyone is doing well.0
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@MadBel Great to have you back and don't apologize for the forgetfulness, I"m getting worse and worse. Then again I'm seldom out of chemo so I've never been able to test if my memory would recover. So just learning to accept it and keep a note pad and pen with me or my iPhone to record reminders to myself. We do learn to adapt.1
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@fearless pain comes and goes. Best described as sharp stabbing pain “down there”. Standing, sitting doesn’t matter. And also descending colon, and sigmoid colon.0
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@fearless… Percocet. My daughter works pharmacy at a shoppers Drug Mart and tells me they are all experiencing shortage.0
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@ToughAsTeal ouch, I feel for you. I can handle pain i most places but my lower abdomen and colon. I can understand the need for the percosets. I really do count myself lucky I've had very little pain in the six years I've been dealing with the cancer.
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@ToughAsTeal
I'm not surprised. They've prescribed my anxiety meds to help with my BP. Apparently I'm too stressed out. Went to fill a repeat the other day, opened it this morning and though it looked a bit lite. Then I noticed the bottle and it said they owe me 84 pills. Hope they have them in by the time I need them. But I notice so much OTC meds just gone from the shelves...senekot, pepcid complete....those are two that I"ve been waiting on weeks now. Anyone else finding shortages lately again.0 -
@Fearless - Vol Mod I have to remember to do that 😄 I sometimes think I need an external brain reminding me. I do now have a whiteboard on my fridge. That has helped but if it doesn't get written on it it might be weeks before I remember.
I had to write down to make a doctor appointment for my pain. They just keep telling me it's scar tissue.0 -
@Fearless - Vol Mod, I've also been dealing with multitude of “other” medical conditions. The most significant one was having a 2nd mastectomy for my breast cancer. The first one was easy – just the expected post-surgery issues and I was up and about within a couple of weeks. I thought it would be the same this time. But it was really the most difficult post-op experience I’ve had on this journey, in terms of wound healing, draining of fluids, pain, movement, etc. Two months out of it now and I still feel like my chest is going to tear open. Anyway, it’s all good now and currently NED, so that’s the big reward!! I’m happy and grateful that I’m here and able to talk about both.
My 6-month check-up for the OC is next month.
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@MadBel
Often the pain is scar tissue, often called adhesions. Some people have a tendency to form them....like me. Apparently I have hundreds all through my abdominal area and I can feel pulling or little sharp pains from time to time. Nothing they can do but surgically remove them and that entails a huge operation. Not worth it for me.0 -
How do they determine it’s adhesion? Does it show up on CT scan?0
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@ToughAsTeal
Strangely mine don't. They tried to fix a hernia I have a while back and it wasn't until they went in that they found them. My surgeon said it was like trying to cut through the Great Wall of China to get to the hernia so they aborted the operation. To clear them out would have added three or four hours and they felt not worth it for the sake of a hernia. I was a bit disappointed but in retrospect, after the agony I was in after them only being in there an hour, mostly taking pictures, I was glad they opted to close me up. No one has yet been able to explain to me why they don't show on the CT scans, not even on an MRI I had a while back.0 -
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@Fearless - Vol Mod it can't been seen, they said its what they think. The last 4 days it's been annoying to the point I had to take something for the pain. My ca125 hasn't changed so no one seems overly concerned.0
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@ToughAsTeal thinking of you as you manage it all
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@Fearless - Vol Mod well now I will wonder if this is scar tissue causing the pain? My next appointment is on 15th. I am content to wait until then to discuss it wi dr…. And know to call if it gets worse. I send myself a little note so I am keeping track of frequency, intensity.0
