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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Hi @ToughAsTeal
You sound like you're in a pretty good frame of mind. I too find reconnecting with old (not age but longevity LOL) pals very refreshing. Sometimes those conversations laughing as you reminisce about things that you did or occurred is just so much fun.
As for the stab...belly for me. But the needle is so fine it's really painless. Just a wee bit of a burning sensation as the drug goes in but that doesn't last more than a sec. I really feel I've conquered an irrational fear of self administering anything that meant stabbing myself.0 -
Is the Ov dialogue a text chat, like this? I am here on a Thursday at 1:07pm
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@ToughAsTeal Good morning. I also did fertility drugs and infections 35 years ago and wondered if that had anythinbg to do with my present situation. Having said that, I would still do the drugs!
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@gaylestorm
so glad you have new medical support that you're clearly far more comfortable with. That relationship and our confidence in them is so critical to our emotional and physical wellbeing. I'm sure, like my oncologist, yours has her little bag of tricks to pull from. When one thing doesn't produce the expected result, there always seems to be something else to try. I know how concerned you are about your recurrence but do remember, I'm on my third and in my fifth year of treatment and still hanging in. You'll find your much stronger than you think you are gal.
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Fertility drugs, homogenized milk contributed? Who can start adding something else to this list?! Likely also being in car when seatbelts were prohibited. Lol0
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Hello: I have a question. You know how we promote the symptoms of Ovarian Cancer and then say "you should speak to your doctor if you have these symptoms." The problem seems to be when you talk to the doctor, they don't do anything because "pain is common", "there is no screening for ovarian cancer" "you aren't sick enough for a ct scan, it's not covered" which is exactly what my doctor said to me four months before I had a tumour the size of grapefruit burst in my pelvis. I am actually doing very well, 1 year post diagnosis, chemo, hysterectomy..... But is there a resource through Ovarian Cancer Canada that helps women urge their doctors for tests? Because I have friends who get nowhere with their GP and Gynos, and they are going down the same path that I went. And calling me saying "what can I do?" So I am checking here to see if there is an advocacy group or process for Canadian women who need more than an ultra sound and pain killers. THANK YOU!0
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Hi @MarlaOMarla and welcome. This is your first time with us I believe.
Yes, OVdialogue is a 24/7 online chat room where members can open new discussions, search for old ones that may have information they're seeking, comment on existing discussion threads, share there own experiences and sometimes just let off some steam.
Thursdays at 1pm EST is our live chat but the content is saved so all members can review the discussions that took place if they're not able to join in.
Tell us a little about you, if you're comfortable or is there anything we can help with?0 -
Good afternoon everyone. @Fearless - Vol Mod what at time you have had! What great news! We do tend to go up and down in this treatment world of ours. What a wonderful time of the year to have your three month hiatus! Congratulations! I am hoping to be able to share similar news. Fifth Caelyx went without a hitch a couple of weeks ago. They decided to do a two month follow up scan and that is this Wednesday. I feel great, although my clothes are tighter and of course my brain goes to "the ascites is getting bigger". However to keep my positive outlook I have decided that this no/low fibre diet is actually making me just gain weight. LOL!
Wanted to share something with everyone. Some of you may know Cynthia Mulligan (newscaster at CTV). A couple of weeks ago she tweeted that her breast cancer was back after 10 years. She is young with young kids. She said the following and it has become (with her permission, my mantra) "I'm not living with cancer, it is just hitching a ride on my amazing life". Kind of what I feel most days.
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Thank you! I just turned 36 and my birthday was my 1 year anniversary of diagnosis of stage 3 Carsinosarcoma ovarian cancer...I found out on my 35 birthday. It has been quite a year, I am doing incredibly well!! I am so much happier without my womb, even though I lost my fertility which ended my relationship. But honestly, I am reaping the many gifts of cancer. I am an artist and it has really informed my work.
I am considering contacting a medical lawyer because my GP could have prevented the medical trauma I endured and my loss of fertility if she had given me a CT scan which would have shown the tumour. But my symptoms were dismissed for years as "ovarian cysts are normal" "take these pain killers".
I would like to know if there is a precedent for this kind of case and set a precedent because the Canadian healthcare system needs to change. When a woman lists all the symptoms of ovarian cancer and has a precancerous condition (which I did) we cannot simply accept the answer "OHIP won't cover a scan, you aren't sick enough." I had to nearly die to get anything done, and I only got good service because my sister's friend is oncologist gynaecologist.
This cannot happy to my sisters and friends.
ya feel me????? Thank you!0 -
@MarlaOMarla Thats seems a common complaint from ovarian cancer patients. Not being listened to by drs and not having a good diagnosis tool. Many GP will only see one ovarian cancer patient in their career. I have joined the walk for hope and shared all my symptoms on facebook for 2 reasons. To bring awareness about ovarian cancer and diagnosis and treatment research. we should be talking about our bowel movements and all the other symptoms.1
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@MarlaOMarla you have endured a lot this past year. One thing that I say over and over is (paraphrasing Walt Disney)..Keep moving forward. You have come to the right place re advocacy. I was seen during Covid because they thought I had acute diverticulitis, oh, and “maybe an ovarian cyst” was scrawled in smaller print.CNN journalist Christiane Amanpour was diagnosed OvC in June. She tweeted? Similar perspective.. that it should taken seriously.1
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@MarlaOMarla I am so sorry that you are so young and going through this. canadian health care system is not at its best right now. however, once you are diagnosed, it seems to be better, except getting scans.
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@MarlaOMarla
I'm going to include @TracyOCC our OCC Director that oversights OVdialogue in case she can offer more than what I'm about to say.
The topic you raise is common across our country. That being the lack of knowledge about this disease within the medical community outside that of gynecological oncologists, and getting to the latter is problematic since a referal has to come through the former. While so many other cancers attack a much larger scale population and therefore most GP's and gynecologists have experienced patients with those diseases, ovarian cancer is not as prevalent. You'd be hard pressed to find a GP who has ever had a patient with the disease. And given the symptoms can be attributed to so many other conditions, OVC investigation is largely a last consideration, not first.
That being said, you'll find many of us admit to exaggerating symptoms, demanding, nagging and all means to encourage some sort of investigation, if only a CA125, which in itself is not the most reliable test. I went through a couple of years with bloating, bowel issues, fatigue...all of which my GP put off to ageing, lack of exercise, weight gain and just about anything else than considering this disease. And given I had an internal each year with palpitation of the gynecological areas and nothing was mentioned I assumed I was fine. But by year three when the symptoms were consistent I started to lose confidence in the examination so when she was doing her poking and prodding I lied and faked pain on my right side...to the extent she decided that perhaps I had a bowel obstruction or inflammation and ordered an ultra sound. Her nurse erred and actually ordered a CT and lo and behold, two weeks later I found out I had a tumor on my right ovary the size of a large grapefruit.
Now I hate to advocate manipulation of an already overloaded medical system but at the end of the day it's your life and if you're not satisfied that everything that should be considered is being investigated then you do need to become a stronger advocate for yourself....tell your doctor you want a second opinion, insist on a gynecological referral, insist that a CA 125 is included in your blood work, even if you have to pay for it (it's only about $35). Whatever. don't give up until you feel confident that everything possible has been explored.
If OCC offers any support along those lines other than assisting us in self awareness I am not aware of it. But perhaps Tracy can weigh in if there is something OCC can contribute to supporting women who believe there are not being adequately supported by the general medical community.
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@gaylestorm thank you! You feel me:)
I know all the OV sisters do. I want to know how Ovarian Cancer Canada is working with the Canadian HealthCare systems etc to have resources to share with my friends who need real action from their doctors before they are diagnosis with cancer, or hopefully to find it sooner if that is the case. And I want to help Ovarian Canada do that because I am a professional speaker, artist and warrior who is ready to make change. I have the scars as my testimony and a passion to change the system so women are empowered in doctors appointments and not shut down by their doctors. Love to you all, I have to sign off for the day....but I'll be back another time!
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@Fearless - Vol Mod amazing:) much thanks! I will be in touch. I really appreciate this chat and Ovarian Cancer Canada.0
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Also, I was very supported after diagnosis. It was the 5 years previous that was the real nightmare.That's where women need help. And the fact that I could have saved my fertility if my GP knew how to do something beside prescribe pain meds.....well I think that just still gets me, and no matter since you can't get that back. Thanks for listening!0
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@MarlaOMarla
You're welcome back any time. Thanks for joining us today and your perspective, which many of us share. A reminder, you may want to tune in to the Teal Tea that's dedicated to younger survivors like yourself. It's a zoom and one of three OCC holds monthly.
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@Fearless - Vol Mod as I am about to sign off… another positive I am doing for myself is reading more.bright now, “between two kingdoms”. It’s hard to put down.0
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I hope everyone has a great week!0
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Wow gals, MarlaOMarla has left us for today but how many of us share her anger about what could have been had our own GP's been more educated on the subject. It's taken me almost the entire five years of fighting this disease to let go of the anger I felt for my own GP of 35 years who couldn't detect a tumor of the size I had, nor thought that previous cysts in my right ovary that disappeared, and two trips into surgery for polyps in my uterus might have indicated a predisposition for something serious gynecologically. The almost funny part of my history was my personal trainer looking at my body shape and telling me that those of us who were in the pear shape category were far more prone to get ovarian cancer than any other shape. I think that was the first time it occured to me that how I felt might be linked to something serious.0
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@fearless. You picked at great name. you do inspire and encourage. I am feeling very greatful today. One year ago I went on a beach holiday with my family. It was a couple of days following my first chemo and I reacted poorly. I only have faint memories of the trip. I thought It could be must last family holiday. However, today i'm packed and going again for the same beach party. This time the group not only consists of my children and grandchildren by extended family members. While cancer is coming with me, it will not dominated or be part of the celebrations. This is a time for joy!0
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@Taita, glad to see you back with us today and good luck with the scan on Wednesday. We'll all be keeping our fingers crossed for a great result. I didn't know about Cynthia Mulligan. How sad but hopefully her recurrence can be successfully treated. A wonderful mantra though. How appropriate to all us, regardless of the cancer for which we are survivors. I must make note of it. Thanks for sharing it.0
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@gaylestorm
Way to go gal! You have a total blast at the family get together. You deserve the best time ever, to make memories but also to just have fun in the moment.0 -
over my life I have been notorious for starting water fights. Last year was a miss. This year I have armed myself with several water squirters ( not allowed to call them guns). Watch out kids and grandkids.0
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And to everyone. I using my first experience with cancer and misdiagnosis to try to make changes for our future generations. My first thought when I was finally diagnosed was, thank god this didnt happen to my children or sisters or friends. That would have been unbearable. I am not doing anything huge, but even making woman aware is a step in the right direction!0
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I'm off now. Have a good week everyone.0
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Well ladies, it's almost 2 and my body is telling me it might be time for an afternoon nap. So I'll sign off now and indulge myself with a few zzzz's .
@gaylestorm I wish you the best day ever with your family.
@Taita that mantra so lovely and so appropriate to all of us
@ToughAsTeal keep on moving forward, one step at a time. It's the little ones that make the biggest difference.
And hopefully @MarlaOMarla will join us again some time.
Have a wonderful week everyone.......
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THURSDAY JULY 22 and WELCOME TO TODAY'S LIVE CHAT.
We've had some significant storms out where I am over the last couple of weeks, all bringing a deluge of rain and WOW, what that's done to accelerate growth in our gardens. The farmers especially are overjoyed. It's not even the end of July and some are already harvesting early sweet corn....yum!
Right now I'm gearing up for my son's arrival on Tuesday. It's been almost two years now and I can't wait to hug him again (we've all had both shots). And he's here for a long visit...almost four full weeks. I'm one lucky mama.
"Brenda" posted a new discussion looking for ways to make time pass when waiting for treatment. If you have some special things you do, please contribute. It's certainly a topic many are interested in and creating an inventory of suggestions would be helpful.
Reminders?
* Last Teal Tea for this month is today. There still may be space available.
* Walk of Hope continues to gear up for those who've registered to fundraise this year.
Almost 1PM EST so let's get started.....who'd like to jump in and say hello first?
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Hello! Joining in today after a few absences, but have been catching up after. How are you feeling now @Fearless - Vol Mod ? I'm glad you took some time "off" for yourself when you needed it!0
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Hi @Tinazzie
Glad to see you back with us today. That's the great thing about these live chats....you can come and go as your time and need to engage allow, but since everything is archived you can catch up on what you missed.
I'm doing OK. I have a 3 month, maybe more, hiatus from chemo thankfully. As long as everything remains stable there's no need for treatment. That said the CT showed a pulmonary embolism in my right lung so now injecting myself with blood thinners daily to break it up. Don't really mind the injections other than it increases my fatigue when I had hoped to gain a bit more energy. And now, adding insult to injury, it appears I have an infection or start of an abscess on one of my molars so taking amoxicillin and Tylenol 2s. Never rains but it pours.
How are you Tinazzie....anything new to update us on?0
