OVdialogue – consider joining our team in the role of Community Champion. 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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
@Hooodith My father suffered for many years with interstitial cystitis. He finally got some relief from Pregabalin, a nerve blocker. He was hesitant to take high doses, but at lower doses of 75 mg he was able to cope, especially at night. Good luck.
0 -
Today's news announced the death of former Ottawa councillor Diane Deans, 5 years after a diagnosis of ovarian cancer. She was a municipal councillor for 28 years, retiring in 2022, 2 years after her diagnosis in 2019. She was also the first woman to chair the Ottawa Police Services Board, including during the terrible period when disgruntled truckers blockaded and harassed downtown residents and businesses. Another amazing teal sister gone too soon.
1 -
Thank you so much for letting us know about this. I had been following her and posted a couple of articles about her announcing and being open about her original diagnosis and when she entered Palliative state as well. She seems to have left us quickly after being deemed Palliative. I hope she went as pain free and surrounded by all her loved ones. Again not sure if she was an active member on our site or not but it does not matter. She was one of us, doing her best to bring about awareness of Ovarian Cancer to the public and being public about her own health state. This is a big thing when you are a such a public figure and commend her on her work,
Here is a link for those that want to read it. In it, it tells of a service and book of condolence that can be signed in the Ottawa area. There is also an email to send condolences to should you so wish. So those that do, wonderful.
Thank you to all who have been following this and with me will mourn her death and remember all she has done to bring awareness to the very disease we continue to battle,
1 -
Good Afternoon Ladies,
How is everyone doing today? I was fortunate to join my girlfriend this morning for a mani/pedi. What a nice way to start the day! Time with a good friend and some pampering.
I don't know about the rest of you, but we had a load of mulch dropped off today. Time to get those gardens ready for the summer and cut down on those weeds. Hubby and the youngest will probably do most of the work since I won't be able to. Anyone have any big plans for the weekend ahead?
I finished my oldest son's Temperature Blanket. He was born in 1999 so it represents the weather for the entire year. Starting in January to December. I am including a picture for you to see what it looks like completed. His favourite colour is green but there was only so many shades to work with and had to choose some other colours that complemented it. Funny thing is, he watched me make the whole thing but has no idea that it is for him.
What is everyone up to today? Where are you at in treatment? How is everyone doing emotionally these days.
I don't know if some of you read the passing of Diane that was posted earlier. I have put in the link where one can pay respects or send a condolence email to the family. If you would like to, please go ahead. I have sent one myself. I am so proud of her to share her journey with the world in a way to bring more awareness to Ovarian Cancer and how it affects more of us than most know. Public advocates like that do help and go a long way. Keep on sharing ladies, it does have an impact.
So, the floor is yours, tell us……what do you want to talk about today.
2 -
@Strongwoman the blanket is gorgeous! I was very sorry to read of Diane’s passing she was an amazing woman and strong ally, I have sent my condolences via the link you provided.
Today is a nice but very windy day here in my neck of the woods. I am doing inside stuff as the pollen count is also extremely high and my allergies are so bad. My dogs will have to settle for running around the property on their own. I had my last chemo a week ago and had a couple of rough days on Sunday and Monday but have bounced back and am feeling pretty good. I’m frustrated that I can’t do more but I realize it will take some time. I hope everyone has a wonderful long weekend.
0 -
Good afternoon ladies
@Strongwoman that is a very nice blanket. I am not familiar with the concept of a temperature blanket. How do you determine the pattern? Well, it has been one week today since we returned home from sunny Florida. It's nice to be home, but I miss being with family in Florida. I am not sure if some of you might remember that the head the gyne onc dept wanted to change my scan schedule from 3 to 6 months which, of course I was not happy about. So, I emailed the onc I've dealt with the most and insisted on having the scan. She actually replied and told me that she had indeed put in the request for the scan. Phew... Instead of having it sometime in May, it's June 3rd. That's fine.
I feel strong and have been given the green light to return to work part time. June 15 will be one year since being diagnosed and naturally it is bringing some trauma to the surface but I find I am coping well. I've had very mild pelvic discomfort that comes and goes dating back to when chemo ended and prior scans showed nothing. When I feel constipated and finally get relief the discomfort subsides for the most part. There is also the fact that I might be dealing with after effects of major abdominal surgery, like nerve damage, adhesions/scar tissue etc.
Today is the hubby's birthday so we will be going out for supper with a small group of friends. It's sunny in mtl today I should get off my butt and go for a walk : )
0 -
@JoanEG Be kind and patient with yourself. Your last chemo! Yay! It will take some time to bounce back. Just think with no more chemo sessions on the horizon every day you will grow stronger and stronger and stay that way. You won't be insulting the body again. So promising! Rough couple of days is no prob for you as you know they are a blip on the grand scheme of things and you will rally around soon enough. Enjoy it. Binge watch something or read, write whatever gets you through the day. You can do it! The grey weather won't help the mood I am sure. You will get there, just hang in. 🤗
@melissa A Temperature blanket is based on the daily temperature for the entire year. So that is 365 days of weather there. Then you choose colours and put them in temperature ranges. That determines the colour you will knit the row with. The pattern evolves as the weather temperature changes. So when I do my youngest son's blanket, his year is 2004 so the pattern even if I did the same colours would vary depending on the temps. People pick anniversary years, birth years, etc to determine who they are making it for and why. This is one of the legacy projects I am leaving them along with a hand written note, the temps for the year and the pattern. Just something from me to them, a forever gift to always remember me by.
I bet you miss Florida! The weather and the family/friends. It looked like you were having a great time! Glad you were able to get the scan sorted out and to your liking as well. That is good work! How are you feeling about returning to work? Full time or part time? Yes, it is hard to determine at times what is healing pains versus scar tissue/adhesions or is it cancer growth. Our minds can play with it all. Best to rely on your number trend and your scans to give you peace of mind.
Hubby's birthday. So many people have birthday this month. My sister, my great niece, my great nephew, neighbour's grandchildren and Mother's Day in there. That equals a very busy month for a lot of people. It is one of those months that we can never be guaranteed good weather either. I recall one Mother's Day, grocery shopping in a pile of slush in the parking lot. Yuck! That wasn't the best day I had either. May 24 weekend can be nice or sometimes snow. Well enjoy your evening out with hubby and some friends.
0 -
Hi. Just had my Cycle 3 treatment…no side effects. Left Toronto at 6:00 this morning to head home. That made a big difference in having less traffic issues! I’m a little behind in posting my updates in clinical trials but I’ll get to it.
That temperature blanket is amazing. That’s so funny that he doesn’t know it’s for him. 🤣
@JoanEG
Yes…you were still under the effects of your last chemo. That fooled me too. I was thinking yay chemo is done…then the side effects hit and I’m like “of course…that makes sense!” You will find new strength as each day passes.
@melissa
So glad you were able to self-advocate for the scan…and they listened. I, too, have odd discomfort at times and, like you, they seem to subside after a bowel movement. Of course…my mind plays games with me and goes to potential cancer issues (just enough to put a little scare into me!) before I reach the possibility that it may be bowel-related.0 -
To ALL: I received a message from @hope2022 daughter who goes by @mymomisawarrior
I wanted to reach out and let you know my Mom hope2022 has been in palliative care for the last 2.5 weeks. Topotecan did not work for her and her journey with this disease is coming to an end. She was not able to access the Elahere as it’s only available for clinical trials and the drug company has not released it in Canada. I know she was very thankful for all the ladies and advice she received on here. She’s hanging on but weaker everyday. I’ll be in touch.
Please send your well wishes to both as our dear Teal Sister embarks on the final part of her journey. 💕🙏
1 -
I want to thank you for all of the support you have given me throughout my journey…from clinical trials to standard-of-care drug combos (BC vs ON). Your participation in this group has benefitted me and many others. You remained positive, determined and courageous throughout your journey - a true inspiration.
I wish you peace and love as you enter this final part of your journey. 🙏❤️2 -
@GloHo @Strongwoman Thank you for the kind words. My Mom would appreciate the love greatly. My Mom @hope2022 passed with all of us by her side at 11:55am this morning today Monday, May 20th. She was so incredibly strong throughout her entire journey. I know she found comfort in being able to access a platform such as this one. She knew she was not alone. It’s hard to find the words right now. I’m going to miss my best friend. Take care and I’ll see everyone at the Walk of Hope in September ❤️
0 -
@mymomisawarrior My deepest condolences to you and the rest of the family on your Mom's passing. It is truly amazing that you were able to and found time today to let us know. She will be missed by many including myself. She was very strong throughout her journey and am thankful she found this platform helpful along her journey. It is places like this, that one is able to be themselves and share all they go through that makes it a community. Your loss of words is more than understandable and your strength is shining through here too. It must have been very comforting for your Mom to have you and others by her side as she passed today. Peaceful is what comes to my mind. You will miss her, grieve her and cherish her. Take the time to grieve and heal. Be kind to yourself and try to get some rest. The next few days will feel long and hard. Be kind to you and let the feelings come forth as they should. Virtual hugs to you all. 🤗
2 -
@mymomisawarrior I’m so sorry for your loss. Sending strength, love and light to you all.
2 -
@mymomisawarrior I am deeply saddened to hear that this disease has taken another teal sister. May you and your loved ones find peace as you grieve xo
2 -
@mymomisawarrior Please accept my condolences. My heart hurts for you all. May you be consoled with the knowledge that she is at peace now, and there is no more stress and pain. She will be in my prayers, and her whole family.
1 -
So very sorry to hear that your mom has passed. My heart goes out to you and all of her family and friends. A true warrior! 🩵
1 -
Good Afternoon Ladies,
For those of you out west, I do sincerely hope that the wildfires are not impacting you directly or indirectly. We here in southern Ontario have broken the heat spell thankfully and are enjoying a nice sunny day with a beautiful breeze. I have clothes out on the clothes line as we speak. Taking advantage of a great drying day!
I have been reading the threads this week and I wanted to touch on the word HOPE. Oxford Dictionary describes it as "a feeling of expectation and desire for a certain thing to happen". I mention this word in particular because we all have and hold on to Hope. We hope that what we are told isn't true in the beginning. We hope that treatment will go well and work. We hope that the surgery will be successful and recovery not too long. We hope that we stay NED. We hope we never recur. We hope that others don't go through what we go through. We hope we are here to see the next birthday, Easter, Thanksgiving, Christmas, Ramadan, etc. What I feel really and truly hope for is that we will live for a long, long time. We can be full of hope at times and other times feel completely resigned to the fact that things will be what they are. Hope is what the family and friends around us need as they watch us go through every little step of our journey. As the book states we can also "Hope for the Best and Plan for the Rest". It is going from "in the dark" to being "in the know". Hope seems to inspire our loved ones with positivity and that the tomorrow is going to come. Sometimes we are hopeful that a certain situation will lead to a certain outcome. If that is what gets you through the day, why not think like that? Can we be too full of hope? I don't know the answer to that, what do you think, ladies? What are your views on hope and what does it mean to you? Where are you in this delicate balancing act? What role does it play into your day to day or to help you get through your journey? Let us know your thoughts on this.
For all out there today, how about some updates as to where you are at in treatment? Awaiting surgery? Hanging in the balance waiting for blood tests or scans to come back? Been told you are NED? Yahoo if you have! Facing a recurrence? Entering a new phase of the disease and heading towards the end? Wherever you are, let us know and let us be by your side no matter what phase you are in. There is a wealth of info out there in this forum of ladies who are more than willing to impart what they know and have experienced with you. I am thankful we are all versed in different areas and some commonalities to be able to help others through there own experience. I thank all of you in this community for making it a community and for all that are coming on board and answering posts or posting what you want to know. This is what makes this a strong community and where we feel we can help one another. Thank you ladies, you are doing amazing at navigating your own journeys and helping others. Keep up the great work! 💕
2 -
Good afternoon ladies
Today in MTL it's not as hot as it's been, planing on getting outside for a bit, maybe go for a stroll in the park or go have coffee on a terrasse somewhere. Very apt word for us, hope. You also bring forward a very good question @Strongwoman is there such a thing as too much hope? If there is an answer it's probably no. For me, what makes things challenging when holding on to hope is keeping the lines between being realistic and hopeful unblurred. I don't want to live in a reality where I am blindly hopeful in the event that things don't go as planned. I read somewhere or heard somewhere that worry brings you nothing. What will be will be so we might as well be try not to worry excessively and enjoy our life.
2 -
I like that "try not to worry excessively and enjoy our life." How so true @melissa
Thank you for that! These days, I am busy in my head and in reality preparing for when I may not be here. I am working on the youngest son's temperature blanket, painting fairies for my boys, niece and nephew. Writing out recipes so I can finish my boys' cookbooks I want to leave for them. Then the writing……that is the hardest part of it all…..some days I can do quite a bit with minimal tears and other days not so much. My office at home would look like Christmas came early IF they were wrapped as such but…they aren't! I used brown paper to wrap and am embellishing with things I find at the dollar store….like butterflies and flowers and such. Because I know my family, if they go in there and snoop, the card for who the gift is actually for is on the bottom of the package. Smart eh?? 😉 I don't want to think about all this stuff but am so fearful I won't have it done and that would bother me more that I am on a mission to complete most of it. I am getting there…slowly.
I am sitting in my dining room with my dog by my side looking out the window as I write these recipes out. Hearing the sing song of the birds, the gentle noise of the breeze coming in the window and the rustle of the leaves that are out there. It is beautifully quiet as well which I like. I have a girlfriend coming over this afternoon that I haven't seen in awhile so that will be nice to catch up too.
Well if you go for that stroll or sit at a terrasse….enjoy….both sound lovely.💕
0 -
Good morning from the west coast. It’s a lovely day here and like @Strongwoman I have clothes out on the clothes line. As for the question is there such a thing as too much hope? I don’t believe so. I think that always having hope is what makes even the days that seem unbearable, bearable. Even if we are nearing the end of our journey/life there is always hope. Hope for a good day or a peaceful passing.
I just want to take a moment to honour all of the brave Teal sisters here and those who have moved on. I’ve learned so much and felt so supported in the time I have been here. My journey has been so much easier knowing I can pop in here if I’m having a rough day or just have a question. Sending love, positive energy and strength to all who need it today. 🫶2 -
@Strongwoman I admire your ability to work on your legacy projects. I truly believe that these things would also be good to do under the best of circumstances, as, we never know how long we have. I've said it before and, sorry ladies I will vent and say it again lol! When the thought of starting any form of legacy project came to mind, I was immediately hit with... I have no children what kind of legacy will I leave behind? Then I thought about it a bit more and realized that is a terrible thing to think of myself.
Of course I have left a lasting impression with many people, in my profession, in my life etc. when I look back at all the patients I have helped and comforted in their time of need I feel silly for thinking otherwise.
I signed up for the walk of hope this coming September and felt a bit guilty..… maybe guilty is not the right word but... Basically felt, why am I signing up for something soon far in advance. Then I said.. well, if the day comes and I can't go I don't go. Simple enough ?
1 -
Exactly @melissa ! You make plans and if you don't feel well or for whatever reason cannot attend, well then so be it! Even though I know I have an end coming, I keep making bargains as to when. LOL Like not this month because XYZ or not that day blah blah blah.
You absolutely have Legacy gifts to leave behind. What about your husband? I found a book that prompts you to do some writing for my hubby. I am done it and just have to add some pics. I have Legacy gifts for my parents, siblings, friends, nieces, nephews, great niece and great nephew. The people that have been with me since the beginning and continue to be there for me. I bet you are so loved by many that you don't even know the impact you have had on some. 🤗
And yes, @JoanEG I love that statement "I think that always having hope is what makes even the days that seem unbearable, bearable." It is so true because there are some days that can feel like that. I am glad I posed that question on the forum and looking forward to seeing what other answers come in. It puts a smile on my face.😀
1 -
Hello my Teal sisters. Today is the first day I can type for any length of time, so I am a day late. Its raining here onthe wet coast. Water much needed as we are in danger of a serious drought and wildfires. Do the provinces around the great lakes have this problem?
We had our ruby wedding last weekend. In the days before, and during the event itself I pushed myself much too hard. Needing to show a perfectly clean and tidy house, and a healthy me. My friend told me I had put on a command performance. Most of it was thanks to my opioid drugs, and sheer willpower. But from the minute the last guest left, my body basically collapsed. Particularly my muscles and joints which had not been required to do much in the weeks and months leading up to it. Pain that would not go away, except with more pills. And digestive problems because of course I ate all the wrong things.
But….it was worth the three days of hell afterwards. Most of my family came, six from far away. All but one of my grandchildren and he was playing in the National volleyball annual tournament. My one and only granddaughter gave us a ceramic teapot she had made and glazed in
the university studio. It was a work of art. My husband gave me a necklace with a red stone that he assures me is not a ruby.
One of the best parts of the weekend was the growing closeness between me and my stepdaughter. We have not had an easy relationship, but something in her has changed. In me too.My 12 yr old grandson said that he didn’t want to go home, which is a huge compliment in my book.
I now have a clean house, except for a curtain of cobwebs I missed. I hope no-one noticed them…1 -
oh @Hooodith it sounds like a lovely time was had by you and all of your family although I’m sorry your body is paying the price! I hope you are going easy on yourself as you recover. As for those cobwebs… meh 😑 Our spring weather has definitely been a roller coaster this year hasn’t it!! One day the heat is running and the next it’s the a/c!
0 -
@Strongwoman Hi,
I have not been participating in discussions lately but reading and appreciating. I am in the process of looking for a day time hospice program. My disease is progressing and I feel day time program would be very beneficial for my mental state. I live in Kitchener and 25 minutes to Guelph. I am wondering if you would share the name of hospice you go to ? If I recall Laura went there as well. And you both spoke well of it. Again I want to say how supportive I find OVC. Thank you
0 -
Hello @Bojenka nice to hear from you. Yes, I understand what you are going through and its why I joined my day program. Wow…when I think about it…..2 years ago. Hard to believe in some ways. Laura did not make it to the day program but she ended up in one of the room's upstairs at the end of her journey. The one I attend is called Hospice Wellington and it is in Guelph just off of the Hanlon on the corner of Kortright and Scottsdale. Easy to find for sure. The phone number you want to call is 519-836-3921. The person in charge of the program is Garth. So that is who you would ask for. It would be great if it worked out and you were able to attend.
Yes, OVC is very helpful and so is OV Dialogue. Both are great resources and is nice to speak with other ladies going through the same journey. What I find the Day Program allows is where we are in the moment and being allowed to express that in a safe space with others facing the same outcome. All of us were given a timeline along the journey, some of surpassed them, others not but we all are voiceful about what we face and realistic about it all. There have been times that I have gone and been a red hot mess there and that is okay. It is what I needed at the time and the volunteers are great. I also do Therapeutic Touch there as well which I really enjoy and find very helpful.
I am sorry you are sitting where you are now. When you are ready, pick up that phone, give them a call and see what happens. I am here if you ever need to chat. 💕
0 -
@Hooodith I am happy to hear you had a wonderful time on your Ruby Anniversary. It sounds like you did way too much prior to it, and that you pulled off a stellar performance. You mentioned it was worth it and that is nice to hear. I bet you struggled a few days not only from the cleaning you did and food you ate but the interacting with so many people at one time. Sounds like you were showered with some gifts as well that mean a lot to you. I think the better outcome and one you did not expect was how you grew closer with your step-daughter. However it happened, bravo. That is a step forward and I hope it continues that way for all of you. I, too, think it is a compliment when the little ones don't want to go home. I don't have any of my own but my great niece and great nephew were here last night and they did not want to go home either. I had bought them new pj's that they were excited about and wanted to put on. So cute!
I hope in the days to come, the pain subsides, the tummy adjusts back to your eating norm and the output remains good as well, Rest my friend and recoup!
We are having a solid rain day here which we need and I am okay with. I bet you need the rain out there too. I have been following the dryness and drought like conditions in many areas out that way and am thankful you are getting rain. Yes, I believe further up north in Ontario and towards Manitoba they are usually at a higher risk of the wildfires than we are in Southwestern Ontario. Hoping for all we get more rain then they are predicting and the produce is bountiful this year!
@Annie1950 It looks like you tried to post something but it is blank. Anything you wanted to share with us?
0 -
Thursday, May 23 2024 was my scheduled final (6th) chemotherapy appointment however CT scans showed that the chemo isn’t working so my oncologist has explained that I only have a few months left. We’re devastated and seeking options. I’m willing to go anywhere and try anything at this point. Just not prepared to accept this. My surgery was a great success on December 22, 2023, giving me a chance of surviving as I was Stage 1 ovarian carcinosarcoma. Now my oncologist won’t even give me a stage. He explained it as a green lawn with no dandelions in sight, and following treatments of roundup the lawn is covered by yellow dandelions. Feeling incredibly sad. Any ideas?
2 -
Oh @Sandi6 I am soo sorry you have recieved this news. My heart is with you xo. With matters like these I struggle to offer/say the right thing. From your message it sounds like you're not giving up and prepared to fight some more. Nobody but you can decide this and, perhaps get a second opinion on other treatment options. You just finished first line. I am upset to hear your oncologist didn't offer you any other treatment. Also, if you want to know your stage, then he should have told you. There are a few ladies on this site that have well surpassed the " months to live " prognosis. Forgive me if you have answered this already, did you have your tumor tested?
There are many tests you could in theory do such as markers for immunotherapy there are a handful of markers that would qualify someone for immunotherapy apart from having high Tumor mutation burden, microsatellite instability. Those are two that are commonly tested with tumor testing for mutations.
Once again, I am so sorry you were given this news. You and your husband look lovely together, I see the love in the photo. If there is anything I can do, perhaps research something for you let me know
1
