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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Thanks @KarenBemi I'll be fine. We all know a new course of chemo takes a bit of adjustment. How are you?0
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@Readersmaven that's my attitude too. While I always talk at length about living in the moment, "eye on the prize" is so important to forward momentum and not sweating the small stuff. Yes, as mentioned, this too shall pass...just an exceptionally tough week on my body...that's doesn't impact my spirit though.
@KarenBemi wonderful news about your first meeting as a patient partner. What will your role be? Do you wait for them to reach out or regular meetings. I'm sure others will be interested in this activity. I"ve just signed my second contract with AstraZeneca and love the work contributing the patient experience to their development of roll out of new drugs and programs.0 -
Not sure if I mentioned this before or not, however despite being worried about a rising ca125, I've decided to be optimistic and have signed up for an online exercise program with University of Alberta. It's a 12 week program, and I'm determined to believe that I'll make it to the end.0
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@Readersmaven that's great. Getting involved in something healthful and productive is a wonderful way to get distracted between test results. I know how challenging that time can be...just the days between a scan and the report which is often less than a week can feel unbearable. Is the excercise program tailored at all to cancer survivors or just generic but allows you to set your own pace?0
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I contacted Alicia Tone after the Symponsium to be included in the group. My first role will be reviewing research proposals for an up coming funding competition for new clinical trial proposals....I think. We are also working on ways to develop relationships with research teams to help give inspiration to what they are working towards and to get inspiration that we can in turn pass along to Our fellow Teal Sisters regarding new trials available etc.0
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@Fearless - Vol Mod program is specifically for cancer patients. Classes are done over zoom and they do periodical evaluations to document the impact on cancer recovery from exercise.
I participated in a similar program locally 6 years ago after my breast cancer and was amazed at the results of a targeted exercise plan.
Hopefully my scan (in two weeks) will be fine and this program will get me through the winter. Fingers crossed!2 -
I am doing okay. I have my next follow up on Friday. it is with a new Dr to the Cancer Clinic as my own Dr isn't available and her next available date is a few month's from now. I didn't want to wait that long. I am a little nervous about this one as I do have stuff I want to bring up to her that I have noticed...which are probably nothing but...with the symptoms that are associated with OVC, everything makes me nervous now a days. I also had a colonoscopy yesterday and they found some "polyps" are being biopsied. Which makes me even more nervous because one of my original tumors was beginning to connect to my bowel. What if the surgeon didn't get it all like she had hoped. Lots of fear running through my brain this week.Fearless - Vol Mod said:Thanks @KarenBemi I'll be fine. We all know a new course of chemo takes a bit of adjustment. How are you?0 -
@Readersmaven Sounds fabulous and perhaps as a online offering participation is not limited only to Alberta residents.
Could you provide the link to the program in case anyone else is interested in investigating it....and could you keep us posted on your progress...as sort of a recommendation for anyone wondering how effective it is?0 -
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@Readersmaven your exercise program sounds great. I too was in a program for 8 weeks of exercises catered to my needs..followed up weeky and changes made for my progress. I found it very helpful.1
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@KarenBemi Good that you have someone available in the absence of your own oncologist, especially when you have issues on your mind. Remember...nothing is too insignificant to raise. Sometimes alone it means nothing but when your doctor hears it in combination with other issues it can form a different picture.
As for the colonoscopy, don't panic. I am a colon polyp maker, or so says my GI. In fact the first polyp they found during my first routine colonoscopy in 2001 was cancerous...small, removed then and there, and other than acceleration of my follow ups for a few years no other treatment required. I have had numerous since, none of them cancerous and I'm assured my colon cancer in 2001 has no relationship to my OVC in 2017. You may just may be a polyp producer like me. Something to keep an eye on and in check but not serious.0 -
@KarenBemi what cancer centre are you connected to? ask if they have a sruvivorship/post treatment program as that may offer the exercise program.0
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@Fearless - Vol Mod
Thanks for the reassurance0 -
Hi @CountryLiving Glad you were able to join in. Happy new year...hope all is well.1
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@Fearless - Vol Mod all is well with me. I ate too much over the holidays and now need to get back to my routine and do more physical activities. I have a few appointments coming up... one with the results of my genetic testing. Looking forward to hearing from them.0
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Trying to post a link, but it doesn't seem to be working.
Will try again.
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Does anyone have any suggestions as to what if anything I should be asking for at my genetic test resultsappointment?0
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Program is open to anyone in Canada and they are hoping to extend their project into ON later this year.1
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@KarenBemiKarenBemi said:I contacted Alicia Tone after the Symponsium to be included in the group. My first role will be reviewing research proposals for an up coming funding competition for new clinical trial proposals....I think. We are also working on ways to develop relationships with research teams to help give inspiration to what they are working towards and to get inspiration that we can in turn pass along to Our fellow Teal Sisters regarding new trials available etc.
Sounds wonderful. Thinking, if approved by Alicia, perhaps you could start a Discussion thread on the group, keeping us all posted on what they have you involved in, and the other patient partners could also engage. Just a thought.
Otherwise, one of thing activities I was most engaged in in my work with AstraZeneca was bringing the face of the patient to their teams, many that have never actually encountered an OVC survivor. So over the year I produced, at their request, three videos where I just talked about my experience and my life and who I am.1 -
@CountryLiving I found my meeting with the genetic counsellor was quite thorough. Obviously they focus on BRCA but they should also be able to tell you if they found any other anomalies and what the status is relative to understanding any medical impact. I was not BRCA so didn't have to have the conversations about getting familial lines informed (btw, men too. Never occured to me that had I been BRCA my son might have had a predisposition to breast cancer). I did have two mutations that came up but no research had yet informed their meaning. That was all about three years ago and I was invited to follow up for any more information that might evolve over time. I do think you could ask what is covered in the genetic test you undertook. I had to have a separate assessment for an HRD mutation before accepted for my trial...that was one not covered in the genetic test that was done earlier and, in fact, I am HRD.1
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CountryLiving said:@KarenBemi what cancer centre are you connected to? ask if they have a sruvivorship/post treatment program as that may offer the exercise program.
I am with Hearth Place in Oshawa. They do have some excerise programs but they mainly consist of Yoga and walking. Nothing targeted for improvement, mostly just to keep active.0 -
@CountryLiving during my conversation with geneticist I basically just listened to her as she related the findings. My biggest question related to the process of getting my daughter tested.
She was very helpful and other than getting in line for lynparza, I didn't have a lot of questions related to me. My mother had OC so guess I wasn't surprised with diagnosis.1 -
I will ask Alicia what her thoughts are on that and I will let you knowFearless - Vol Mod said:
@KarenBemiKarenBemi said:I contacted Alicia Tone after the Symponsium to be included in the group. My first role will be reviewing research proposals for an up coming funding competition for new clinical trial proposals....I think. We are also working on ways to develop relationships with research teams to help give inspiration to what they are working towards and to get inspiration that we can in turn pass along to Our fellow Teal Sisters regarding new trials available etc.
Sounds wonderful. Thinking, if approved by Alicia, perhaps you could start a Discussion thread on the group, keeping us all posted on what they have you involved in, and the other patient partners could also engage. Just a thought.
Otherwise, one of thing activities I was most engaged in in my work with AstraZeneca was bringing the face of the patient to their teams, many that have never actually encountered an OVC survivor. So over the year I produced, at their request, three videos where I just talked about my experience and my life and who I am.1 -
I'm off, will try to post exercise link later. Hope everyone has a good week.2
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Ladies, it's after 2:00EST and time to end this conversation for another week. Tizzie, who is regularly with us and a valuable contributor to our chats, messaged me earlier she couldn't join us this week. So nice to get notes that tell us others are thinking about us. Hoping to see her back next week.
Some great insights today gals. Wishing all you with tests and consults and results coming up this next week the best news ever. But regardless, we're all stronger than we often think we are. Stay the course and you all know we're here for you when you need us.
See y'all next week......2 -
@Readersmaven I will look forward to checking out the link. Take care till next week.0
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@Fearless - Vol Mod hope you feel a bit better this week.1
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Have a good week ladies2
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@Fearless - Vol Mod here is link to EXCEL program website...
https://kinesiology.ucalgary.ca/labs/health-and-wellness/research-projects/excercise-cancer-enhance-living-well-excel
As I mentioned, I'm looking forward to it.
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