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).
Best Of
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
In light of some of the conversations on here as of late, I found this quote that I thought was fitting:
Fear is a reaction, courage is a decision.
Winston Churchill
Fear is a reaction, courage is a decision.
Winston Churchill
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@BellaDonna1959 What a horrifying and embarrassing situation you found yourself in. It must have been traumatic at the time. Thankful that a compassionate nurse came by and offered to attend to you instead. Nice to know there is humanity out there, isn't it.
I am sure looking back parts of the story are comical. Like when you stated the bathroom was now a "biohazard". Which in all fairness, it was with all that blood. One wonders what the cleaner thought when they had to come and clean it up.
How are you doing these days?
I am sure looking back parts of the story are comical. Like when you stated the bathroom was now a "biohazard". Which in all fairness, it was with all that blood. One wonders what the cleaner thought when they had to come and clean it up.
How are you doing these days?
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@Sandi6 I am checking in to see how you are doing this week. How are your spirits and outlook on things? Any better than previously. Let us know when you can.
Take care
Take care
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@BellaDonna1959
OMG…that is too funny! 🤣🤣🤣 You must have been beside yourself at the time though! Glad you can look back and find the humour in it.
OMG…that is too funny! 🤣🤣🤣 You must have been beside yourself at the time though! Glad you can look back and find the humour in it.
GloHo
1
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Ok…typical out-of-towners in Toronto. I was not prepared for the snow storm they had and, of course, the only footwear I had were loafers. Slipping and sliding all over the streets. I am a fast walker so had to adjust my pace to a lot slower! But slippery is slippery - no matter the pace! Made it through without falling on my arse! 🤣🤣
Well…this clinical trial process is definitely different than the first one I went through!
I finished all of my tests on Friday…have seen most of the results already and I do not see any obvious red flags in the reports. The reports have been sent off to the sponsor for review against their specific criteria. I should know early-ish on Monday if I am definitely in the trial or not. Then the fun begins…we will be in Toronto from Mon-Sat next week. I will write more specifics in the clinical trial section when I begin treatment.
Something I did not know…you should carry your port card with you at all times. It is hospital policy to see the card before a CT. No one has ever asked to see my card so, unless I have my purse, I do not have it with me. Of course, I had decided to leave my purse and stuff in the hotel room…just brought my health card. One of the nurses said if I didn’t have my card, they wouldn’t be able to use the port. I actually jumped out of the bed because I didn’t know if I could withstand anymore vein poking! I showed them the many bruises I had from my visit to the hospital a couple of weeks ago. Anyway…I calmed down and told them they could look for a vein. Guess what…couldn’t find one. Almost didn’t get the CT but after much discussion among the nurses, techs and whoever else is in the CT room, they agreed to do it.
Now about my port. I had it installed in Jan ‘23, so it hasn’t been in long. When I went to our hospital emerg a couple of weeks ago, they had trouble with the blood draw, but got it going.
Then, at PMH on Friday, they had trouble with the first blood draw but got it going. We left the needle in because I needed it for a CT a few hours later. So, get to CT and they can’t draw blood. Ended up taking the original one out and putting a new one in. Still had trouble but got it going. (This after them agreeing to even do the CT…good grief!).
Now this brings me to the heparin vs saline lock debate. God…I thought we were over that a year ago. Guess what PMH uses…yep…heparin. When I mentioned that no one else was using heparin any more, my snooty little nurse told me that I should tell them to use heparin because it’s better than saline. But that does make one raise an eyebrow…if PMH is still using heparin why has everyone else switched to the saline lock? Money? Safety? Why don’t we get a choice?
Of course, after my CT fiasco, I was in a time crunch to get to my next appointment across the road at Toronto General. So I slipped and slid as quickly as I could and just barely made my appointment time. Great…an ECHO after all the stress I had just been through with CT, I honestly wasn’t sure what that report was going to look like!! 🤣 Initial report looks ok to my untrained eye…phew. Tough day!!
GloHo
1
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
It's very late
I've been thinking about legacy work quite a bit the past week and I know what I want to do. At least, I know a few things I want to do. I think it's funny cause I have always wanted to write. What's funny is that for reasons I won't get into for a few reasons, are one, they are boring and two I didn't properly learn how to write in high-school as I skipped an entire grade altogether. Not for reasons one may think..
Anywho, I want to write a story/ biography of parts of my life and yes, cancer. Of course if I actually do this I will need an editor cause my syntax is not the best. If all these socialites like Kim Kardashian can do it, then I most certainly can.
Since my best thoughts come to me at the end of the day I figure I will share the first paragraph with my teal sisters.
Not title yet
Chapter one
The year was probably somewhere between 1995 and 2000 which puts me between 15 and 18 years old. I can't remember the precise year, what I do remember is where I was and that is important. I was at the Jewish General Hospital in my hometown of Montreal, where, as I sit writing now is still my town. Back to 2000 I stood waiting for an elevator and as the doors opened I experienced my first true meaningful moment of empathy with a perfect stranger.
Lying on a stretcher inside the elevator was a young man going through cancer. Utterly evident at least to me it was as he possessed what I have now come to refer to as " the stigmata of cancer' no hair on his head or eyebrows. This moment was not just one I was having alone, as our eyes met and held for a moment or two. Just long enough for him to notice the look of pity that was probably plastered all over my young naive face. However fleeting the moment was I knew he was sick, and he knew I knew it as well.
He averted his eyes, slouched back and down further into the stretcher almost as to get away from this strange woman. He looks up to the ceiling to escape as the elevator doors close.
That moment left me feeling sad for this young man who was probably in his 20's or 30's. Needless to say I waited for the next elevator to arrive and I have never forgotten about that silent interaction.
Since then, I have been on the receiving end of the look I have him so many years ago... Perhaps a touch of foreshadowing?
I've been thinking about legacy work quite a bit the past week and I know what I want to do. At least, I know a few things I want to do. I think it's funny cause I have always wanted to write. What's funny is that for reasons I won't get into for a few reasons, are one, they are boring and two I didn't properly learn how to write in high-school as I skipped an entire grade altogether. Not for reasons one may think..
Anywho, I want to write a story/ biography of parts of my life and yes, cancer. Of course if I actually do this I will need an editor cause my syntax is not the best. If all these socialites like Kim Kardashian can do it, then I most certainly can.
Since my best thoughts come to me at the end of the day I figure I will share the first paragraph with my teal sisters.
Not title yet
Chapter one
The year was probably somewhere between 1995 and 2000 which puts me between 15 and 18 years old. I can't remember the precise year, what I do remember is where I was and that is important. I was at the Jewish General Hospital in my hometown of Montreal, where, as I sit writing now is still my town. Back to 2000 I stood waiting for an elevator and as the doors opened I experienced my first true meaningful moment of empathy with a perfect stranger.
Lying on a stretcher inside the elevator was a young man going through cancer. Utterly evident at least to me it was as he possessed what I have now come to refer to as " the stigmata of cancer' no hair on his head or eyebrows. This moment was not just one I was having alone, as our eyes met and held for a moment or two. Just long enough for him to notice the look of pity that was probably plastered all over my young naive face. However fleeting the moment was I knew he was sick, and he knew I knew it as well.
He averted his eyes, slouched back and down further into the stretcher almost as to get away from this strange woman. He looks up to the ceiling to escape as the elevator doors close.
That moment left me feeling sad for this young man who was probably in his 20's or 30's. Needless to say I waited for the next elevator to arrive and I have never forgotten about that silent interaction.
Since then, I have been on the receiving end of the look I have him so many years ago... Perhaps a touch of foreshadowing?
melissa
2
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@GloHo probably 1998/99, either way you're right. That moment stayed with me and he came rushing to my mind when I was diagnosed. It's funny what stays with us. I will probably edit it about 20 times before deciding on a final draft lol.
@JoanEG hope you're starting to feel better now that you're in the comfort of home and your sister to help and keep you company.
@JoanEG hope you're starting to feel better now that you're in the comfort of home and your sister to help and keep you company.
melissa
1
Re: Managing Lynparza side effects
@Shortie Thought I would check in as I didn't see a reply from my last post to you. I am wondering how you are doing and if you wanted to give an update. When I don't see replies from fellow Teal Sisters, it concerns me greatly. I do my best to not let myself "go down the rabbit hole" with it and try to imagine that you are busy and forget to post instead. If you can update us soon, I, for one would love to hear how you are doing.
Take care
Take care
Re: Recurrence Number 2
@Camper62 Good Morning. It has been a little bit and thought I would check in. Last time you posted, you were experiencing a lot of emotions and some news of a recurrence. Have any updates? How are you doing in general and emotionally? I have been wondering how you are doing and would love to hear an update. Thinking of you and hope we hear from you soon.
Take care
Take care
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@BellaDonna1959
Sorry to hear you are not that happy with your oncologist. It is positive news that you have had such success with your cocktail!!
Sorry to hear you are not that happy with your oncologist. It is positive news that you have had such success with your cocktail!!
Unfortunately, it is true that there are restrictions on drugs and specified times when they can be used and combinations that can be used in order to be funded by the government. So, your Oncologist is correct when he tells you that. This information is available in the drug monograph that I look up in the drug formulary found on the Cancer Care Ontario website. The drug formulary consists of drugs approved by the government based on research findings from clinical trials.
It is also true that while you may get a certain drug regimen at a specific time in your treatment (ie, first line, second line, etc), I may receive different drugs at that same point. I’m not sure that one is better than the other, rather decisions are made based on you specifically. There is not a one size fits all formula for us. Does that make sense?
I think you have to be especially careful with what you read because we do not all have the same type of ovarian cancer nor are we at the same stage of our journeys and different drugs work better for some than others, even with the same cancer. I do find some of the combos mentioned on this site interesting and will often research and ask my Onc about them. 😁
I am currently applying for my second trial. This one is at PMH and I should know by Monday whether or not I have met all criteria and can move ahead with treatment. 🤞 It’s a lot of work for a drug you’re not sure will work but if it doesn’t work for me, maybe the research they gather from my participation will help someone in the future. I just try to stay positive and, like you, will try drugs if there is potential for improvement or even stabilization of my cancer.
I am currently applying for my second trial. This one is at PMH and I should know by Monday whether or not I have met all criteria and can move ahead with treatment. 🤞 It’s a lot of work for a drug you’re not sure will work but if it doesn’t work for me, maybe the research they gather from my participation will help someone in the future. I just try to stay positive and, like you, will try drugs if there is potential for improvement or even stabilization of my cancer.
Sending positive vibes for continued success on your current cocktail!!
GloHo
1