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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In a way, it makes sense @GloHo Our internal organs do not like to be handled at the best of times let alone going in to take a biopsy. Your theory of how to treat and rule out other issues is admirable.
Hope it has remained calmed down and that you can begin your treatment on Wed as planned.
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@JoanEG It has been about a week since you have been home....or longer?!? How are you doing? How is the healing process going?
How does this first Monday and April Fool's Day of the month bring everyone today? It seems to be a mixed bag as to who is off work and who is working. Today, in my neck of the woods (southwestern ontario) it is to be 10 degrees today but is looking fairly cloudy thus far. I have let the dogs out and the temp doesn't seem too bad. Traffic on my road looks the same as always. I have not slept much. Probably in anticipation of what may or may not be said today in my appt. I have eaten, swiffered, made my bed, showered and dressed for the day. Going to try to write a little and then work on my recipe books for the boys to occupy my time. Leaving around 11am. Maybe I will try a meditation as well. In the meantime, headphones on, listening to music as a distraction. List of meds ready to go. Breathe and calm. Not that I am anxious in some regards more about if surgery can be done, what that might look like and the quality of life from it as well vs do nothing approach and continue the path I am going. Won't know until I have all the pieces....hours to go.....wish me luck!
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@Strongwoman I have been home for 10 days now. I’m feeling stronger everyday. My daughter from Saskatoon flew in yesterday. It was a lovely surprise as I had no idea she was coming! She is here until the 9th so she will take over the chauffeur duties and the heavier cleaning. My sister went home yesterday she had been away from her family for 3 weeks so I’m sure she was happy to let my daughter take over.
Good luck with your appointment today. I hope it goes well!1 -
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What a wonderful surprise @JoanEG You enjoy every minute of your daughter being there with you. I am positive your sister enjoyed her time with you as well. Both will be happy that they have been able to help you as you heal. There are times that certain types of days or smells remind me of when my parents were here helping me. 1
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Well my fellow Teal Sisters. Please send @paulaholmesrodman strength as she sits with her sister Lindsay through the end stage of her disease. Paula has been a huge advocate for Lindsay throughout her journey and to bring autism awareness into the focus and helping to advocate for all in the process.
Paula, we wish you and the family the strength you need to help Lindsay in this final part of her journey. We wish Lindsay, a peaceful passing into final part of her journey. Hugs, strength and love to you all on this day.
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Sending strength and love to @paulaholmesrodman and family as you help your sister on her final journey. May her passing be peaceful.0
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Strength to Paula in her sisterly love and compassion, and peace to Lindsay as she passes through that loving door.0
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@Strongwoman. My husband had colon cancer and in 2020 he had an operation where they temporarily resected his bowel and put in a colostomy. He had it for a year. If this is what you are looking at, I want you to know that , in his own words, he found it “a little inconvenient”. He quickly got used to it, and none of his anxieties about it materialised. He got a huge amount of support with it, too. The biggest problem was the cost as the bags and stuff were not covered in BC. He has completely recovered now.0
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@Strongwoman
Thinking of you as you await your surgical consult. Sending strength and hugs as you confront your options and the decision best for you. 🩵🤗0 -
Thank you ladies. I am home now and have let my inner circle know and can now let you all know as well.
The surgeon was very nice, knowledgeable and trustworthy. After speaking with him, I would not hesitate to let him perform a surgery on me.
The plan is this:
Go ahead with the CT scan at my local hospital this Thursday
Get or be booked in for a colonoscopy with the surgeon to see if he can see what is going on from that end and possibly be able to blow some air in if there is a blockage that way.
Get or be booked in for a Specialized CT scan of my small bowel only at the hospital this surgeon operates out of. This is so we can get a better look at what is going on with my small bowel and to determine if a surgery would be safe etc based on both findings.
I am at peace with it all. It is progressive and the most non-invasive at this point in time. It will give us some answers in order to discuss what next steps may or may not be possible.
Thankful it was not a "sorry we can't do anything" OR "I don't know, sorry". This is what I felt I was sitting in before all this. No one knew what to do with me or offer any direction. Not that this is any one person's fault, we only know what we know and have only so many tools in the toolbox. I am grateful this surgeon had a few more tools left, if for nothing else at the very least to give an idea as to what is going on.
I told him that I would really like to be able to eat more food and more variety in the near future.
That is it. Progressing forward to find a resolution. That's all I can ask for. 1 -
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@Strongwoman I’m glad this consultation went well. It sounds like you will be in very good hands!0
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@Strongwoman - who is the surgeon is he/she at PMH? I have small bowel issues too so I am very keen to follow your story. All the best for great results with all your tests.
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Thank you @JoanEG
@BellaDonna1959 Thank you for the well wishes. For privacy issues and for respect for all physician's out there, I do not want to name my surgeon on the forum. They are not out of PMH.
My small bowel issues are why I continue to experience ileus and follow a restricted low residue diet. I wish this were not the case but it sadly is for me. Although I am experiencing this, it does not mean that others will follow the same path as we all have individual journeys. I can understand the interest in following my story and medical path. It can give rise for discussion with your own health care team. The frequency of my small bowel issues and length of time between them is giving rise to explore this further. I am also aware that the result may be in finding out that nothing can be done and my disease is progressing. If I find that out, I will move out of the "in the dark" and into the "in the know" about where I stand with my own journey. Currently, I sit "in the dark" not knowing what in particular is causing these repeated events which is frustrating as I do what I am supposed to do and am at the mercy of my body. It saddens me that my body is not happy inside and am hopeful this testing will shed some light on why in the very near future. I hope you understand my rationale behind it all. I encourage you to speak with your own team about anything that you feel may help you as it pertains to your own journey. I wish you well with whatever that looks like. 2 -
@Strongwoman
What a relief that you have been presented with these interesting non-invasive options to try to figure out, first of all, what is really going on. Did he give any indication how soon you might expect to get started with the testing?
Thank you for sharing this info…it will be valuable to our Teal Sisters with bowel issues to have these options in their back pocket for an informed discussion with their Onc and get an appropriate referral. Is this Dr a gastroenterologist or colorectal surgeon?
It sounds like you are in very good hands for sure!This brought something else to mind that I know I am guilty of. We go into consults with our limited knowledge and think that it is either going to be black or white. We do not consider the rainbow in between…that option that we are not aware of or are not expecting. For instance, as I enter this trial, I was thinking this drug is going to work or it’s not. My rainbow is the potential for stabilization. So, Teal sisters, as you move through your journeys, always look for the rainbow. 🌈1 -
Good Morning @GloHo Yes, it is a relief to have been presented with options such as I was yesterday. The surgeon is a general surgeon but is known to do what both my Palliative and Oncologist say are "aggressive" surgeries. It is why I waited for this one. Why go to someone who will say, sorry, I am not comfortable with performing something like that to then only have to wait to be referred again?
I am happy to share this info with others. It is through sharing that we learn from one another. Maybe it may help myself and perhaps it is info to pass along to someone else and it may help them. No matter, it is for the greater good, I am convinced.
You put it so well in your last paragraph:
This brought something else to mind that I know I am guilty of. We go into consults with our limited knowledge and think that it is either going to be black or white. We do not consider the rainbow in between…that option that we are not aware of or are not expecting. For instance, as I enter this trial, I was thinking this drug is going to work or it’s not. My rainbow is the potential for stabilization. So, Teal sisters, as you move through your journeys, always look for the rainbow. 🌈
Looking for the rainbow.......nice!
I am currently back to steeping my turkey tail tea before hopping in the shower to then go spend time with my elderly Aunt this morning. I made a batch of ginger molasses cookies that are chilling in the fridge right now. I will make these with my youngest son this afternoon. It is already very windy here and not looking like a nice day. Thinking of making a pasta dish with crab meat for dinner in a white sauce. Sounds like that kind of day to me. The men in my house will love it. Other than that, I think I will watch The Rookie with my youngest son this afternoon and perhaps work on copying my recipes I have done already for my other son.
To all, if you have not read it, please refer to my post labelled "Legacy". We have had a fellow Teal Sister leave our world yesterday. Please send the condolences to the family. May we reflect, share and hope that one day, they will find something to help us all fight this disease or to pro-actively head it off before it has a start. 2 -
@Strongwoman
Hmmmm… Interesting how I just jumped to the conclusion that he was a specialist. Glad your team was able to find a progressive, forward-thinking surgeon.0 -
Well, just passed my five-year diagnosis anniversary. With everything going on - I was actually in biopsy that day - it just kind of slipped by. I am just so thankful that the choices provided and decisions made for my care have been able to carry me this far!! And now I begin a new trial 🤞 🌈.3
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Hello fellow teal sisters. It's been a long time since I've posted on this site but have been swayed by our amazing moderator, @Strongwoman, to shed a little hope, especially for those just starting their ovarian cancer journey.In February 2020 I experienced painful cramping in my abdomen. After being prescribed two rounds of antibiotics to clear up a suspected UTI to no avail I was put on a list, four months long, for a CT scan. I was given an ultrasound that confirmed a mass that was either a massive UTI or growths of unknown origin.My family doctor did her best to facilitate specialist appointments but the earliest I could see a surgeon was four months into the future and a gynecologist, eleven months. Such is the state of our health care system.I was encouraged to go to the Emergency Room of my local hospital with the Ultrasound findings. I was experiencing a lot of discomfort and fortunately followed their advice and went to Emerg. Thank heavens I fell into the hands of two wonderful internists who arranged for me to be seen by a gynecological oncologist within a very short time. After my appointment and CT scan, I was diagnosed with stage 3C Ovarian Cancer. It was the beginning of COVID lockdowns and they bluntly told me that surgery would not be on the table. Because of this, I sent my results to the Cleveland Clinic for a second opinion and a request for a cost breakdown of surgery if I had to have the tumors removed stateside. The number was mind blowing but my family was behind my decision to do whatever was deemed to be the best course of action regardless of cost. Fortunately for my finances, COVID lockdowns eased and I was operated on in July 2020 at Princess Margaret Hospital.I have been NED for almost four years and feel so blessed and thankful for the amazing care I received at Princess Margaret, especially from my brilliant Oncologist.In those four years, I've appreciated my family and friends more, improved my education, traveled, and learned to be more grateful for all the good around me.This site has also helped me in so many ways. I'm impressed by the knowledge that my fellow teal sisters manage to glean but mostly by the strength and resilience that consistently shines through.Big Hugs to all of you inspiring Ladies.xo5
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That is great to know you have made it past a 5 year mark. I am sure it does not feel like an accomplishment at times, though.GloHo said:Well, just passed my five-year diagnosis anniversary. With everything going on - I was actually in biopsy that day - it just kind of slipped by. I am just so thankful that the choices provided and decisions made for my care have been able to carry me this far!! And now I begin a new trial 🤞 🌈.
You are right in your statement about choices and decisions. We all have them and make them. It is what makes us keep moving forward and feeling some hope in all this uncertainty.
Looking forward to your journaling of your trial.
Hope you don't get blown away out there in the meantime! Gosh it is super windy today!1 -
Thank you @Annie1950 for posting your journey and sharing it with us all. Thank you also for returning back to the forum and posting. We never know who we may touch or reach when we post. It may be that 'glimmer' someone is looking for or piece of info they need in order to get to that next phase in their journey. Through sharing is how we do this. At the time we are "in the weeds" and sometimes can't "see the forest for the trees" but slowly it clears and we start to find our way and our paths get a little clearer day by day. Still there are some dark days and those are okay too as long as they are passing not staying.
One of the common threads I read far too often is that this is discovered by usually a medical appt investigating something else. Sad isn't it that our symptoms can be either disguised by something else or ignored and passed off as another ailment until we find the Big "C" and our worlds change forever.
I am assuming that you had HGSC or is that information incorrect?
Ladies, we have @Annie1950 here and if any part of her journey resonates with you, go ahead....ask what you want to know. If she can answer, she will. Lets all learn from one another as we forage ahead in our journeys. 1 -
Update from Toronto…power outage at Toronto hospitals…yes, including PMH!! I tried their health portal and tried to call nurse…neither working! So…treatment or no treatment today??!! Not looking good. Good grief!0
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Yes, it was HGSC @Strongwoman. We don't have a history of any cancer in our family and genetic testing didn't show any gene mutation. We all wonder why our cancer occurred and now they're finding a link with bacteria. I used to love going to the gym and relaxing in a communal hot tub after exercising.
After multiple yeast infections, I stopped going into the hot tub and voila, they stopped occurring. I highly suspect that this may have caused a change in my chemistry that contributed to cancerous mutations. I'm curious to know if anyone else has had similar experiences leading to diagnosis.
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@Annie1950 that is interesting to think bacteria could be a contributing factor. I also have no family history. Did you take a parb after frontline? I have just finished frontline and have started Zejula.0
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@Annie1950 Thanks for sharing your story. It gives me hope.0
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Interesting theory....this bacteria connection. I have not seen any info/articles on that. Do you have any handy that you can share @Annie1950
I, too, had nothing hereditary come through on my genetic testing that was done twice. Who knows maybe one day in the near future some compelling info will come shining through and shed light on it all. Here is to hoping that day isn't too far off. 0
