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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Good Morning Ladies.
Over the night, I was thinking about a lot of things, one of them being this site. As you know and can read some of the topic/posts since the beginning of the year have been heavy and dark for some. This is something that does occur with our diagnosis and not a conversation I want to be dissuaded in anyway. The ladies going through it need the support and time to reflect, vent or speak what they feel is pertinent to us who are not where they are. They hold valuable wisdom from years past with battles with this disease that they have fought with brave faces and tenacity along with the will to live. There are many how have helped shaped things within either this forum itself, OCC or at the legislative level to ensure that there is adequate funding for research of our disease. I would like to take this time to thank them whether present still or if they have passed on, give yourself space in a moment of silence for these women who have done everything they can to overcome this disease and unfortunately the medicine and research isn't quite right yet to have more survival rates. These are brave, courageous and vulnerable women who have shared part of their lives with us to impart any and all wisdom they possess and grace us with their compassion and support along the way as well. To all of them, a heartfelt......THANK YOU!
To all other ladies out there, some beginning their journeys. Do NOT be afraid of what you read. Skip over it if you are not ready to know some of it yet OR take notes for later with advice from others that have BEEN there. We all face things as we are able to mentally, emotionally and physically. We are brave and vulnerable when we post and share our stories. We will not all go through the same things or at the same time. We cannot all be happy at the same time either because life doesn't work that way. Don't be afraid or cautious to type in something joyful or happy when others are not there. You never know it may provide someone else with a pick me up they were looking for or perhaps that they didn't know they were looking for. The trials some have tried and journaled their journey is invaluable information you won't find "just anywhere". As you know you can drown yourself in the search bar of Dr. Google and along with it your spirit as you attempt to find the answers you are looking for. Instead, use our search bar, try different key words to see if you can find what you are looking for. Check out the webinars that we have or that OCC has. Tell your story and share your feelings too, be vulnerable in a place that is safe with others going through similar things.
Wherever you are right now as you read this, thank you all for your participation vulnerability and bravery for posting what you do and sharing with us all no matter where you are at in your journey. Let's give thanks for being able to have this site to come to and for those in the background that navigate the hiccups so that we may have a smooth site with not many hiccups to overcome.
If you would like to share your entire story, let me know by sending a private message to me. I would like to start monthly sharing our stories. It may help you to tell it and it may help others who are new to the site. Let me know your thoughts on this.
As we now are entering into the Family Day weekend, surround yourself with love and the support of others. Create memories. If you can, document or photograph it. We often forget that even little events are worth capturing. Whatever you end up doing, I hope you have the strength to participate for however long you can to interact with those you love and don't forget to tell them how important they are in your life.
Now, I am off to my Open Art at Hospice to do what is called Kintsugi. "Kintsugi is a centuries-old Japanese art of repairing broken pottery and transforming it into a new work of art with gold, the traditional metal used in Kintsugi. The name of the technique is derived from the words “Kin” (golden) and “tsugi” (joinery), which translate to mean “golden repair.” The scars and cracks of the broken ceramic become the focus and turn the object into something unique and exquisite."
I have decided I am doing this for my nieces and nephews and am going to include this quote I found with their piece to remind them that things will be okay. It is how we look at it that makes all the difference.
Here is the quote:
"All beautiful things carry distinctions of imperfection. Your wounds and imperfections are your beauty. Like Kintsugi, the Japanese art of mending broken pottery with gold, we are all perfectly imperfect. Breakage and mending are honest parts of a past which should not be hidden. Your wounds and healing are a part of your history; a part of who you are. Every beautiful thing is damaged. You are that beauty; we all are."
Now that I have read that as I wrote it. Fitting for the topic at hand today that I was discussing with you.
Take care all and be kind to yourselves. 2 -
I am so thankful for this platform and all the ladies who share their stories, their hopes and fears. I am constantly inspired by the courage and determination of those who have been on their journey for some time and grateful for the knowledge shared by all.@Strongwoman the quote is beautiful and indeed fitting. Thank you. ❤️1
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@Strongwoman
I can’t wait to see your creations. Sounds like a beautiful art form and a great way to recycle pieces that may otherwise have been tossed out. The quote is, indeed, very fitting.
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Thank you ladies. I will definitely share once I am done. 1
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Something to uplift us all today....
"Smile
Smiling is infectious
you catch it like the flu
When someone smiled at me today
I started smiling too
I walked around the corner
And someone saw me grin
When he smiled I realised
I had passed it on to him
I thought about the smile
And then realised its worth
A single smile of mine
Could travel round the earth
So if you feel a smile begin
Don't leave it undetected
Start an epidemic
And get the world infected."
--Spike Milligan
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❤️0
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@Strongwoman
Thanks. 😀0 -
Thank YOU to all the Teal Sisters out there. May all of you enjoy in some way, Family Day OR appreciate what they mean to you in your life. 1 -
@Strongwoman and everyone have a warm, thankful family day. I am celebrating by having my last round of chemo followed by dinner with four generations of my family! I am so thankful for my large, supportive, loving family. ❤️1
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That sounds AH-mazing @JoanEG
Don't forget to take pics....we often do....incredible...four generations...so wonderful.
Celebrate and enjoy it all...soak it in. 1 -
@Strongwoman I will definitely take pics! 😊0
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Happy Family Day Everyone! It is cloudy here on VI this morning, but the weather Gods have promised some sun later. I hope so. My family is scattered this weekend, with their various significant others and their kin. But R and I have been doing some walking and admiring the clumps of snowdrops everywhere. There are even some daffs getting ready to bloom along the trail to the clifftop. We have been immersed in learning about Interstitial Cystitis, now known by up to date urologists as Chronic Pelvic Pain ( CPP). I am on a very restrictive diet and am beginning, rather tentatively, an exercise program specially designed for pelvic floor issues caused by years of tight muscles and compressed nerves. I am hoping this will help me. I am also going to look into acupuncture. I have had bladder issues for yonks but this latest, and worst flare was probably triggered by the chemo, which can do that apparently. The diet is bland, because there are so many things that can irritate the bladder, particularly acidic foods and spices. All the things I love. But its worth it if it stops the pain.1
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@Hooodith I hear re:diet and rewards vs symptoms and "likes" It is difficult but the benefits are worth it in the end esp if it provides more or better QOL (quality of life) I hear you and hope it all goes well. Keep us posted. Let us know if the acupuncture helps it too.
So, so, so jealous of the snowdrops and daffs coming up....we received another round of snow so we are covered with the white stuff here...for now..I believe it is to warm up again. Yeesh...Mother Nature and her tantrums
Sunshine is so great esp feeling its warmth on one's face and if in a window your body. So nice to see!1 -
As we are well into February and we are starting to see the sign of spring, I thought seeing some pics of what may well be in many gardens hopeful, inspiring and possibly uplifting. Gosh knows we can all use it!
I know @Hooodith has been commenting on the snowdrops that she has been seeing out in BC. It is one of my favourite flowers for sure. I, personally, like the simple ones....tulips, snowdrops, crocus, daffodils, lily of the valley to name a few for me. Only thing about this time of year is the mud! For those with dogs, you will understand and get it....feels like you clean all the time. If you wipe their paws off, it still seems like we don't get it all.
Anyhow, where are we all at today? I, am waiting for my referral to a surgeon still to see if a pro-active surgery may be in my future and what that may look like. Today was the first day I actually felt like cleaning and was able to since my episode in January. My boys are home today and we decided it would be a KD day for lunch. We will work on dinner after that.
Anything anyone wants to share? Be it on their condition and where they are at or something going on in their life? How are all the little grandchildren that some of you have out there? Anything coming up this week that you want to discuss? Go ahead.......I am here and others will be too. Share away.2 -
It snowed here this morning for a bit but it's melting as we speak. It's 2 degrees outside! Perfect for a nice longish walk at some point today. However, I'm pretty sure it's going to be freezing this weekend.
Had a scan February 9th and am waiting for results. My dr told me a while back that they get the results within 24 hrs and 48hrs on weekends. I think I'm playing a mind game with myself. The more days that pass, and no phone call I tell myself that it's good news. Of course that might only be true in a perfect world with a perfect healthcare system1 -
Hello sisters. I’m so glad to be done with chemo! I had a blood transfusion yesterday and I’m hoping to get some pep back in my step. I have been busy contacting my siblings with the information they need to get the genetic testing. This has left me feeling guilty, as if it is all my fault if other family members have the BRCA2 also. Crazy I know but… I’m crossing my fingers that neither of my kids have it but at least knowing will be a huge step towards prevention.
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@JoanEG congratulations on completing chemotherapy!!!! I remember the feeling, and was, as you said, so glad. I can imagine feeling guilty about the BRCA mutation, but, remember even if your kids have it there is so much they can do to prevent ovarian cancer. So while having the mutation can be scary, it can also be a blessing to find out early and take control. This is not your fault, I'm sure deep down you know that. But, we can't help feel the way we do especially when it comes to our loved ones1
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@melissa Where I am, in Ontario, it is 11 degrees outside. Thinking of going for a walk with my boys after my load of laundry is done in the washer. Taking advantage of it, as, I too, heard that this weekend is to get cold and then double digits next week.
As for yourself, it is hard, waiting. There is nothing wrong with thinking that no word is a good thing and every day that passes means a good thing. If it helps you get through the days, so be it! When you do find out your results, you will have your moment or two and then will be able to process the information at hand. I say this no matter what the results are. When it is clear, we are sometimes stunned that it is clear and are hearing or reading it correctly. Let your process be your process is the motto. Don't question it, let it be and evolve.
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@JoanEG Glad to hear you are finished your chemo for now. That must feel good. Sorry you required a blood transfusion. I have had a couple of them and they are different for sure. Does help bring your body back to some sort of balance, that is for sure.
I can see why knowing this news (BRCA positive) would create thoughts like that. Remember we can't change what we didn't know. I look at my nephew who found out on Tuesday (I was with him) that he has a rare genetic condition that came from his biological father. It's not like when we go to procreate we look at the other party and say, "hey now, what genes do you throw?". You can only deal with things looking forward and part of that is like @melissa stated, being able to provide others with the info so that they can then look at what pro-active measures they can take. The simplicity in "knowing" is so much better than the "unknown" or in some cases "why". Knowledge is power. You have gifted them all with the power to do something about it themselves now and to have conversations around it. You have done all you can. Genetics well they are genetics and its a role of the dice when we procreate. With that being said, "would you really change anything?". I wouldn't. Look at the beautiful children you made and are here with you today.
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@Strongwoman thank you. As always you seem to know exactly what to say to boost my spirits. ❤️0
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Ladies! I don't think truer words have been spoken. It is why we do what we do on this site. Even when you don't think it may matter or you don't think it will make a difference, do it. Post. You never know who you might help that day exactly when they need it. We all have our stories of our own journeys and everyone's matters. 2 -
Good morning Ladies. There hasn't been much activity on here as of late. I am hoping it all means good news. If it is due to the glitch and not knowing there are messages there, let me know please. Marianne is very diligently working on this to get it resolved.
As for me, well, I was informed yesterday that my referral to the surgeon is sitting in his "inbox" and that he hasn't instructed them what to do with it yet. It is beyond frustrating knowing this information. All I want to know is, do you think you will see me or will you not?
Yesterday was a bad day. I woke up with nausea and was mostly in bed for the day. I feel better today but am fatigued. Trying to recoup my energy as hubby wants to go to Toronto on Saturday for the day. He is extremely excited, I am not. I will do my best to change that come Saturday or at least hide what I feel.
Our home sold and we were handed N12's on Saturday. So now we pay our rent on Friday and wait to see what they do next. The paralegal we have seems to think they will hand us an offer, I disagree but we will see. If not, we wait to go to a hearing in front of the Landlord Tenant Board.
Waiting.....it seems that is all I am doing. It is all we do with this disease as well, isn't it? Frustrating at times. Other times we manage it better and sometimes not.
Well, that is where I am at but we have other Teal Sisters out there in far worse situations than I, currently and my heart goes out to them and their families. I wish them peace. 1 -
I asked the hospital pharmacist to go over a list of supplements and he pooh-pooh'd almost all of them as 'do not advise' while on chemo. So frustrating - I have to go back to all the studies showing some DO help. Does anyone have a link to a site that actually shows contraindications/conflicts between Avastin and/or Taxol and different supplements - especially anti-oxidants? Do you elminate anti-oxidents during chemo and a few days after? Might save me some time. Has anyone had Vit C I.V. treatments during chemo? I am stage 3C Ovarian spread to ab cavity and platinum resistant. No Braca or HER positives and P53 Wild type which I read means no mutations recently - has anyone else read this? Thanks all. Currently 'stable' and I asked for a week off instead of 4 infusions a month - side effects were getting so debilitating. So far so good.
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@Strongwoman good morning. I’m sorry you are stuck in the waiting game that is so frustrating. I hope you are feeling well enough to make the trip to Toronto on Saturday. I can sure relate to how nausea can be so exhausting. I’ll be crossing my fingers your issues with your landlord get resolved!As for me I woke up last Friday morning with a sore scratchy throat and went into panic mode not wanting to wind up in emergency over the weekend. I texted my GP and she got me to come in and did swabs and bloodwork. She gave me a prescription for antibiotics to take if it got worse or I developed a fever. I actually felt fine later in the day and all the tests were fine. I had an epiphany and realized the pollen count was high and I had tulips in my house = scratchy throat, sneezing. 🤦♀️. I’m feeling pretty good this week and trying to eat well and build up some strength before my surgery.0
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@Strongwoman I am sorry you are still dealing with the landlord situation. I hope your paralegal is right and they will offer you a settlement. Although I am sure you would rather not have to deal with this added stress. Sigh. @JoanEG I remember the panic of feeling as if a cold were coming on during chemo, glad it turned out to be allergies!
Today in Montreal the sun is bright and the temp is supposed to climb to 12 degrees so I am going to take advantage and go for a nice long walk along the bike path since most of the snow has melted. About to leave for the gym haven't been for 2 weeks. I was avoiding going as I was afraid my dr would call me with my scan results and didn't want to be alone when she called. Scan was Feb 9th and I'm still waiting, however I've decided my desire to go to the gym is stronger than my fear of receiving results alone .0 -
@BellaDonna1959
Sorry to hear your pharmacist is Pooh-poohing some of your supplements. So hard to know what is safe and whether or not useful. Good move to speak to your pharmacist though. Some things can be downright dangerous when combined. Like you, I would listen to my pharmacist but probably re-research why I decided to take it in the first place. Problem is…each supplement has its own benefits and cautions - but may not interact well with each other or cancel each other out if not taken at the right time or in the right sequence.
I usually go to Drug Interaction Checker on Web MD. Not sure if it covers supplements or not. AND/OR the specific Drug monograph available in the drug formulary on Cancer Care Ontario site. AND/OR just type in the drug name with the supplement(s) in question and see if anything pops.Hope this helps. I know we all want to “do something” to improve the efficacy of chemo drugs but care should be taken and always discussed with Onc.2 -
@Strongwoman
Wondered what was going on…I’ve been finding my message notifications in my spam folder.Sorry to hear you’re feeling off but glad you’re feeling better today. Get that energy back.Sometimes the waiting gets the better of us!!Oh no…landlord stuff on top of everything else. Hope things work out in your favour. So much stress!Are you going to Toronto for anything specific? I know what you mean…my husband grew up there and he can spend hours just roaming about downtown!! Even before “C” I loathed going downtown with him but, like you, would just grin and bear it. Really hope you’re feeling better for the excursion!0 -
@BellaDonna1959 if you haven't done so already perhaps check out "Medscape" it's frequently used in hospitals and I have personally seen many doctors use it to look up drug dosages etc. also, the site " up to date" is used by professionals.
Not sure if this will help solve the issue of mixing supplements with chemo and Avastin but won't hurt.1 -
@melissa
So glad you’re opting for the gym over waiting for the call from your Onc. Exercise can help relieve the stress you’re feeling and get your mind off it for a bit…not to mention how good it is for your physical wellbeing!!
Can you initiate the call to the Onc to get your results? I think two weeks is not an unreasonable time for you to do a follow up call.0
