Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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@Sandi6 I'm sorry you're having a bad day. Bad is probably not even the right word but as a fellow teal sister I can imagjne. I must say that what you wrote is beautiful and moving, even though it's coming from a place of sadness, despair, fear and all the other laundry list of emotions that come with our diagnoses .
It's great that you're able to get it out and write it all down. I believe doing this can be helpful even if only a little bit. From day one I wanted to journal about my experience but have not started. So kudos to you for doing so, and being able to share with us something so pure and with deep vulnerability.
I can't imagine having those words uttered to me in regards to only months to live.. probably no word in the English language to describe a moment like that. I will say that @BellaDonna1959 was also given " months to live" and has well surpassed that time. I wish I had something more profound to say. Instead I ll say what you probably already know. Doctors are wrong all the times they make estimates but they are not gods. You are a fighter! You spent quite a while fighting for your life in ICU post surgery and you made it out.
Keep thinking about the summer activities you want to do ( golf was it) boating etc keep those goals and take it one day at a time...
Breathe in....breathe out.. accept that today is a bad day, tomorrow will be better xo1 -
@melissa thank you so much. It feels great to hear from you, and I appreciate your kind words and support. I love that you brought up my fight in ICU, as I’d forgotten that! Makes me feel stronger, so I’m grateful 🥲
I’ve always wanted to journal, but haven’t ever been consistent until now. I’m so overwhelmed and find pouring my thoughts onto paper helps release my emotions which seems to have a profound impact on my mental wellbeing. I hope you find yourself journaling soon.
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@Strongwoman I’m sorry to hear you’re dealing with another obstruction. It’s so difficult, but it’s great that you’re going to be looked after on Monday. Rest and visualize your bowels moving freely and easily until it happens. I’m thinking about you 😘1
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@Sandi66. I'm reaching out because in May of 2022 I was bluntly told I likely had only months to live - but I'm still here. My surgery was a no-go after opening me up and my many Stage 3C tumors are Platinum refractory. Listening to the oncologists, my tumors would predictably grow and kill me. But I did everything I could to stop them - lots of dietary changes, new healthy mental and physical habits, trying off-label and other not 'standard of care' things - everything I could research thoroughly and get my hands on, I tried and continue to try. My attitude has always been that I'm not going without a fight. I remember well the waves of horror and grief that would wash over me during those first few months filled with fear and anguish when I thought the doctors knew everything. I've proven them wrong and have responded better to my maintenance cocktail than any of us could have anticipated. Currently I'm stable - in treatment and living with advanced cancer. I know it could change at any time, but today I live with the hope you speak of and with very little fear and anxiety. I tell my body every day that, 'Every day, in every way, my body is healing.' I believe it. I'm hoping that you will also beat the odds and beat the prognosis and prove them wrong, because it is possible. They don't know for sure how your body will respond to different treatments. I don't know how much time I have left, but like you, I am filling it with things that matter and bring me joy. Don't let them ever give up on you - keep fighting. Thanks for the beautiful words and uplifting message.1
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Does anyone have a good recommendation for a really comfortable but supportive bra? I have been wearing Calvin Klein barely there bras from Amazon. No wires, no hooks, just material and adjustable straps. They are so comfy but offer almost no support. I would like an equally comfy bra that does offer support. I'm a 44 C-D so I need the support, especially as I switch to tank tops and tees. I avoid wires and hooks whenever possible. Thanks!
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In answer to your question @GloHoGloHo said:@Strongwoman
Geez…so much going on!! Sounds stressful, but will be manageable when the time comes. I agree…communities are great that way!!
EVERY time I speak to my Onc she asks a lot of questions about my bowels and orders me to keep on top of that! She spooks me every time she talks about it!! I know how serious it is (thanks to this site). I think I am doing enough. I stay away from foods known to cause me constipation. If I have a couple of days without a movement, I take Senokot. I have also noted that some meds slow me down so would take a Senokot to get ahead of it. Should I take Senokot daily? I know there are cons to that…but haven’t really researched it yet. I will have to ask my Onc that question as well and dive into other options she would like to suggest. Are obstructions more likely a result of where the cancer is or constipation?
I don't know what to say. As I have mentioned before, Senokot moves things through the bowel. Restoralax puts the moisture back into the bowels via osmosis. Sometimes they are used in conjunction with each other. There is also a tea by Traditional Medicine called Smooth Move that has senna in it which is the active ingredient in Senokot. It has a licorice taste to it and I have found taking it after eating breakie or lunch is best as there is no cramping. Taking it at nighttime induced cramping for me. So there are some options there for you to discuss with your Onc about what may be best for you at this time and why. When you get an answer, if you would mind posting it, that would be great. We are all individuals with individual needs but it still would be good to see what yours says for your own unique case. Best of luck!0 -
@GloHo Nice that you knew before heading into the weekend as well. Yes, I look forward to your posting of your clinical trial and your experience of.GloHo said:GOOD NEWS!! The trial is a go starting next Wednesday!! I will be posting about my clinical trial journey separately. 😁
My amazing trial nurse got her hands on my heart monitor results and there are no issues. As expected given all the other heart tests I’ve had that didn’t reveal anything!!
Now go have a wonderful weekend with your family!
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Hi @Rad I remember you from awhile ago. Nice to see you on again. I am happy to hear you are NED. Yes, it would be wonderful if we caught this disease at its onset but unfortunately it is not the reality for most of us. If mine didn't result in a GI bleed, I had been told by my Gyn that he didn't want to see me in 3 yrs. Well I would have been in Stage 4 somewhere by then. As it was, mine was Stage 3C when they found it. I do hope that in the future they devise something for earlier detection in us women so that it doesn't get to these later stages for us. That is my hope anyways.Rad said:Sorry to hear about @Eileen, my thoughts and prayers with her and her family through this difficult time and @Strongwoman for letting us know.I am not on the chat most Thursday but I read all the comments. I was diagnosed with ovarian cancer ( stage 1A) in October 2020 had total hysterectomy and 6 sessions of chemo.I saw my oncologist every 3 months for the first 2 years, and now every 6 months. I have not had any reacurrance since, my point being that early detection and treatment is important.
You have yourself a wonderful weekend and Happy Easter! I hope to see you post now and then on the forum again.
Take care 0 -
@Sandi6 You have written many heartfelt and anguishing words. How long have you been struggling with this? When did your team tell you how long you had to live or what your prognosis was?Sandi6 said:Today, I find myself grappling with emotions too heavy to bear as I confront the harsh reality of my ovarian cancer diagnosis. It's as though the weight of the world has settled upon my shoulders, pressing down relentlessly with each passing moment. The words of the doctor echo in my mind, a stark reminder of the finite nature of life and the fragility of our existence.
Sadness envelops me like a suffocating shroud, casting a shadow over even the brightest moments. I am overwhelmed by waves of despair, each one crashing against the fragile walls of my resolve, threatening to engulf me entirely. It feels as though I am drowning in a sea of uncertainty, unable to find solid ground amidst the tumultuous currents of my emotions.
In moments like these, I seek solace in busying myself with mundane tasks, hoping to distract my mind from the painful reality of my prognosis. I bury myself in work, in chores, in anything that will grant me temporary respite from the relentless march of time. Yet, no matter how fervently I try to escape, the truth remains ever-present, a constant reminder of the finite nature of my existence.
The thought of having only months left to live fills me with a profound sense of grief and disbelief. How can it be that my time on this earth is so cruelly limited? There are still so many dreams left unfulfilled, so many memories left unmade. It seems unjust that life should be so fleeting, that our moments of joy should be overshadowed by the specter of mortality.
And yet, amidst the darkness, there is a flicker of hope, a glimmer of light that refuses to be extinguished. It is the knowledge that even in the face of adversity, there is still beauty to be found, still love to be shared. It is the realization that every moment, no matter how fleeting, is a precious gift to be cherished and savored.
As I navigate this journey with ovarian cancer, I am reminded of the resilience of the human spirit, of the capacity to find strength in the midst of sorrow. Though the road ahead may be fraught with challenges, I am determined to face it with courage and grace, to embrace each moment with gratitude and love.
And so, I continue to journey onward, one step at a time, guided by the unwavering light of hope that burns brightly within my heart. For even in the darkest of times, there is still beauty to be found, still joy to be shared. And though my days may be numbered, my spirit remains unbroken, a testament to the enduring power of the human soul.
With love and resilience, in solidarity with each of you beautiful women. 😘
Please know that when we ask this question, it is their "best guess" based on the information at that time. As we go through our treatments those goal posts can change. It is difficult to look at the number they give you and wonder all the things you are wondering about. It would unnatural if we didn't. You are grieving my friend. You are grieving for yourself, things that you will miss and for your family. It is all natural to feel those feelings. Yes, we can look at all the things we want to do and may not be able to do and in the meantime miss out on the here and now. What every blessed moment we have on this earth has to offer. The meaningful chats and experiences we can have with family and friends. It's okay to be saddened and have times of downright despair over the hand we have been dealt. It is important to find out how to balance them. If you are struggling, I would urge you to connect with your team or wellspring.ca and connect with someone to help you through this. If you have a Hospice in your area and they offer a Palliative Group, join it. I am thankful every day I joined mine when I was experiencing difficulty with everything. I, too have once again been told that I may have months to live but with my obstructions well it could mean anytime depending on how severe they are. I choose to live every day for what it is. I have sad moments especially as I put final preparations on my Legacy gifts for my loved ones. Some days are worse than others when I do it. It depends on the person it is for. What propels me forward is to not become a shell of myself before I need to. There will be a time, my body will do that on it's own and I won't get a say. You can see the light as you can see it in your final paragraphs of what you wrote. It is there, that hope and resiliency. Let some of that grief come forward when it presents itself and then find a way to move forward. I delved into reading books on Death and dying for awhile so I had a handle on what I want when I want. My favourite is Being Mortal by Atul Gawande. Second would be Die Wise by Stephen Jenkinson Gave me food for thought and how I wanted to spend the rest of my days.
What I do know, we are here for you, whenever you need us. Your feelings are feelings of grief which are normal. As long as you don't get stuck in this grief, it is okay. If you are struggling, let me know and I will send you what resources I have. There are also a wealth of info on Wellspring.ca to check out and you may find something there that resonates with it in a short video.
Whatever it is, know you are supported and loved, that you are recognized for the bravery you have shown to be so vulnerable on this site and that we will do what we can for you in your time of need. Perhaps looking at it one day at a time for now and not looking too far ahead will help.
If you have plans this weekend, enjoy them for what they are. Take pics, make memories that last forever and above all, if you can, have some fun and maybe laugh a little. We are with you on this one. Hope some of this helps. 0 -
@Belladonna @Sandi Thank you for your kind words and words of encouragement for our Sandi. I would encourage anyone trying something new that you discuss it with your team prior to using it. Especially "off label" and not "standard of care" things. We never know why or what will intermix with our current treatments and when. It is best to present it to your team and let them know you are thinking about it before trying it.BellaDonna1959 said:@Sandi66. I'm reaching out because in May of 2022 I was bluntly told I likely had only months to live - but I'm still here. My surgery was a no-go after opening me up and my many Stage 3C tumors are Platinum refractory. Listening to the oncologists, my tumors would predictably grow and kill me. But I did everything I could to stop them - lots of dietary changes, new healthy mental and physical habits, trying off-label and other not 'standard of care' things - everything I could research thoroughly and get my hands on, I tried and continue to try. My attitude has always been that I'm not going without a fight. I remember well the waves of horror and grief that would wash over me during those first few months filled with fear and anguish when I thought the doctors knew everything. I've proven them wrong and have responded better to my maintenance cocktail than any of us could have anticipated. Currently I'm stable - in treatment and living with advanced cancer. I know it could change at any time, but today I live with the hope you speak of and with very little fear and anxiety. I tell my body every day that, 'Every day, in every way, my body is healing.' I believe it. I'm hoping that you will also beat the odds and beat the prognosis and prove them wrong, because it is possible. They don't know for sure how your body will respond to different treatments. I don't know how much time I have left, but like you, I am filling it with things that matter and bring me joy. Don't let them ever give up on you - keep fighting. Thanks for the beautiful words and uplifting message.
No one knows how your body will respond to anything including conventional treatment. It is a guess at best because that is all they have. Everyone is an individual and will respond differently.
Living with a status quo in treatment with minimal side effects is a good place to be sitting. It may not be NED but it does generally mean we can live life as normally as we can and what we feel quality of life is for us as individuals. Quantity of life is time but how one lives in that time and the state of your disease within that time may not be quality. So going forward, look at that. Ask those questions at your appts. Ask if I do X what will that do in your opinion or what will that look like vs Y and all it shows of the same. Above all, be you, figure out what quality of life means to you and then go live it. Love those around you and all the memories you can create. The conversations you can have will be cherished forever.
Above all and the common thread on here is finding HOPE wherever you can and whatever form you can. It is what will pull you through this. Whatever "agreements" you have to state you need like to see so and so or watch so and so do this, well make them. They may be what pulls you through the other end. For me last year it was seeing my niece get married. Nothing happened on anyone's bday and Xmas. I made all those landmarks so I am happy. This year, I make new ones for a couple of months only and go from there. Hoping to surpass them too. You will make it through, you let that grief eek out and then, let it go for a bit for it to return another day. Enjoy today if you can and find a piece of joy in it. We are here for you and will walk beside you in this journey. 2 -
Yes I always check my 'other' treatments with PubMed or other scientific portals that have studies showing if each one truly seems effective or not. Then I search for contraindications with my Taxol and Avastin and all my prescribed medications. It's exhausting. I agree that discussing alternative treatments with the oncology team is a good idea - however, they may not wish to discuss/agree with something they are not 'allowed' to recommend or know nothing about. For this reason, I think the ultimate decision is ours. My oncologist is pretty open-minded and agrees with a lot of what I'm doing once I site or show studies, as is my family doctor. But my oncologist has said many times that he isn't 'allowed' to say yay or nay and he just encourages me to do my research and make intelligent choices and do no harm. He does say to me, "Keep doing what you are doing" since my results so far are so good, integrating my stuff with the treatment cocktail. In the USA there are integrative oncologists who openly embrace alternative treatments. Also some new developments in supplements and off-label drugs etc are proving to be effective and/or helpful for some of us and it will take years for Canada to approve them or even test them. Things move very slowly here I've found. I figured I had nothing to lose really so go for it. The ones I got my family doc to prescribe are Metformin and Vermox. But I take a lot of supplements and use some THC/CBC suppositories too. For sure, do your thorough homework as each cancer is individual.0
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@Sandi6
How eloquent! You have touched on everything I know I have felt at one time or another…and still do occasionally.Thank you for being so open and honest…for sharing your innermost feelings…your words are truly powerful.
Keep that light of hope in your heart shining brightly.We are here for you.🩵1 -
Well Ladies today brings a new day for me. I feel I am mostly over my obstruction. I feel better and did some light cleaning already and have had a shower. Abdomen feels better than yesterday as does energy. I will still watch what I eat and stay to mostly clear fluids. But all in all....a turning point which is nice. I certainly did not want to be feeling like this all weekend. So frustrating at times.
Nice to feel better when we aren't well, isn't it?
Well, enjoy, the cooler day we are having in Ontario. I think that it will hopefully warm up in the days to come and those spring flower will pop. I have heard that the daffodils are already up in part of BC. So nice to see spring emerge, the days are longer which equals more daylight for us and that it will begin to warm up.
Take care all
I am going to work on my son's recipe books again today. Wish me luck in how far I get! 2 -
@BellaDonna1959
Like you, I do a lot of research on all kinds of things…it is quite exhausting and some days I feel like I’m going around in circles! 😵💫
Sounds like you have a very supportive and forward-thinking team on your side. So glad you have been able to find the right cocktail for you and it is working with much success.I do not have a recommendation for you, but…Have you looked at Knix bras online? Does Victoria’s Secret have something? There are still some “lingerie” shops around. I went to one in St Catharines a few years back.1 -
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@BellaDonna1959 I have seen those KNIX as well and they seem fairly decent. I don't know anyone personally that has bought them. I had suggested them to my Mom though. I, am on the small side so supportive bras are not my thing. I do know it is very important to get a good fitting one though due to being a RMT for my profession. I have seen first hand what being well endowed has done to many women's backs and necks. It is truly an issue that some overlook. Make sure you do some wall pushups to open up the chest and strengthen the pectoral muscles in the front so you stop the shoulders rolling forward. Hope you find something you like!
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@BellaDonna1959 I’ve just purchased a new bra online from Shapermint, and I love it! It’s the Truekind Supportive Comfort Wireless Shaping Bra and it’s so comfy. None of my bras fit since I’ve lost so much weight, and it’s great to have a bra that fits again!0
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@Sandi6 - I will check out that bra - thanks so much.0
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can you post a link to the bra? On Amazon.ca there are several in that brand but not the one you suggested unless I am just not seeing it. Thanks.
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@BellaDonna1959 if you google Shapermint Canada it’s one of their bestsellers and they’re having a one day sale. This bra is on sale for $28.99. Hope you can find it. I’m sorry…not very tech savvy so don’t know how to send a link 🤣0
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A dear friend came for a visit and shared some worksheets she used to use in her counseling sessions. She used to be a minister, and has always been there for everyone in our village. One of the kindest people. I’m going to try to share these with you on here. I am grateful for this information as I believe it will help me deal with everything.1
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Thank you @Sandi6 for sharing what is evidently very meaningful to you in your life right now. It also looks like it is going to help you get through this difficult time you are going through. It is thought provoking, possibly daily work and work sheets to work through. I imagine as time goes on, your outlook and/or view may differ as well and then the process will begin again.
There are many different ways of handling our journeys. It all differs for each and every one of us. There is no right and no wrong. For we are individuals and are motivated by our own beliefs and spirituality. There are practices among many different cultures and religious beliefs or lack there of. Holding on to what provides meaning and 'sense' to you at the difficult time in your life is what matters. We don't have to explain ourselves to others or why we choose to do certain things. The only things that need to be clear is your wishes and that they are relayed to both your medical team and your Advanced Care Person so that they can be implemented.
So many interesting approaches, beliefs, etc out there and I, myself, do what I can to soak it all up so that I can make my own journey the experience I wish it to be and so that it is less painful for those around me. Yes, of course for myself, first but ultimately we are a village in this journey of ours. Hoping each and every one of you find the path and choices that are unique to you and meaningful. That they are followed and you have the journey you foresee for yourself right now knowing that the journey is fluid and may ebb and flow with time.
Make peace with yourselves. Enjoy family and friends. Smile. Laugh. Cry. Vent. Do what you need for yourself today. 0 -
Inflammation…who would have thought?!!
Core needle biopsy - omentum.
Local anesthetic - felt fine first couple of days.Started feeling mild pain - took Advil - eased pain.Mild pain continued - took two Advil next day (morn & eve) - eased pain.
Small bowel movements each day - didn’t feel like I had the stomach strength to push - at least it was something!
Had loss of appetite and nausea thinking about food - ate a bit each day - supplemented with Boost.Night sweats - immune system working.
Woke up feeling much better!
After morning coffee - bowels working!
Am feeling itsy-bitsy discomfort today - will take Advil before bed to keep pain and inflammation at bay.I was not expecting any of this. I guess inflammation, in addition to the mild pain, may have been pressing against bowel? Just glad I decided to take something for the pain and inflammation and that it worked.I did not have a fever so ruled out infection and decided to try to treat inflammation. If it did not work, I would have gone to hospital, just in case. I was thinking “Great…supposed to start treatment next week - this is all I need!” 🤣0
