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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Comments
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@JoanEG Yes it is. I asked when I recurred and they were urging me to stop working and enjoy life.
You focus on whatever you need to. I feel I should not have waited for a life event to get me to think about Legacy. I wish the word spreads far and wide that we all should think and start a Legacy project while we can and are able. I think about how more at ease I will feel if something happened and I had them all done versus something happening and I hadn't even begun. Just think of all those photos on your phone.....how will the family get them?
Some people have thumb print passwords on their phones...another thing to think about. So much to think about and do, the time is all of ours to seize and begin....1 -
Hi everyone, almost forgot it was Teal Thursday. I had a bad migraine and was unable to join the symposium. How do I get to watch the recording of it? Anyone know? It sounds as though it was uplifting. I need an uplift. I was diagnosed stage 4 with pleural effusion in Feb 2022.I am dealing with my urologist changing my re-scheduled stent replacement operation to Nov 20th and pushing my next chemo one week beyond that. He speaks to mon onc about this but not to me. Mon onc leaves a message on our phone last night that neither my husband nor I can understand. He is English speaking Caucasian but we were not sure if that was the language we were listening to. This would be, if he has OK’d it, the second time my chemo has gone five weeks instead of four. I am now on a dairy and gluten free diet to see if it helps my gut problems. My husband has stepped way beyond his comfort zone and is making me scones and bread. He constantly amazes me. I think it might be helping.I am going to try to go to our little island Remembrance Day service at our war memorial outside the RCMP station on Saturday. It seems more important this year. I think because I have been thinking more about what a privileged, stable, and happy childhood I had, and how many people lost their lives so that I could grow up in a peaceful UK. I hope I have made my life worthy of their sacrifice.
May you all have happiness, comfort, ease, and strong painkillers.1 -
@Strongwoman
Thanks for the diet advice. I see Boost hot chocolate topped with whipped cream in my near future!!2 -
I forgot to post a poem. But instead, in honour of Remembrance Day and peace, I am going to guide you to a song I wrote in 2013, c alled “ Children of Syria” Its on the CD that our group made. If you would like to hear me singing it, google Bandcamp, and in the search bar, type either Dreamyth, ( our group name ) or Feast of Dreams, ( the CD name ) It will show you the song list and you just have to click on Childern of Syria. Somebody mistyped the word children. You might have to turn up the volume or adjust your headphones. I have been thinking of changing the name to Children of Gaza. There is a picture at the top with the name Andrea Georgiev underneath. Its a picture of us. I am the tall woman between the two men. The man at the end is my husband and the other man is our fiddler, Jeremy. The other woman is Andrea, who died of lung cancer in 2021. She was one of my dearest friends. If you listen to any other tracks, she is the deep, rich, alto voice. I am the mezzo soprano, or as my mother would say, the messy soprano. @JoanEG, you might like the song as half of each verse is about the Cowichan Valley, driving through it on a sunny September afternoon.2
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@JoanEG I was thinking of you this week and the picture you posted after your first round. We are in similar parts of our journey in the sense recently diagnosed. Nov 15th I have my last chemo session and I find myself getting more nervous as this means I will be entering the surveillance phase.
Like you mentioned, indeed it's hard to face our own mortality. I have been a nurse for many years and have cared for many many ill/dying patients including a few with ovarian cancer.
Not to say we are all done for but I don't think it's possible to truly explain the feelings that come with facing our own mortality to someone without cancer.
Sure our friends and family are paramount and do their best, but can never truly understand the fear. It's been almost 5 months since I first found out, had my surgery, and now am reaching the end of 1st line. I must say the fear of recurrence is quite high but I am working on ways to learn to live with it. As well, my subtype doesn't respond as well to chemo but at least they were able to remove all visible cancer and said I had " no intra abdominal disease" please forgive me, I just got the sense that I've said this before lol chemo, while side effects have been on the milder side have certainly given me " chemo brain"
I never asked my oncologist how much time I had. I think I'd rather not know. I knew from day one that I was stage 3B with tiny spread to omentum only no lymph involvement. I asked my oncologist flat out if I had a fighting chance and not to sugar coat anything. Her reply was " absolutely "so I'm taking that and running with it.
I'm not sure @JoanEG if you have previously shared your stage but disregard me asking if uncomfortable. I'm sorry I missed the symposium!
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@JoanEG I completely missed the most important part of your message. Yes!! We must operate a mindset that we can be cured. Hope is very important. I'm not sure what people believe, or even what I believe. I do however feel that there have been many positive signs sent to me. From a spiritual realm.... Not to get into religion or anything but I believe my grandfather " pops" whom I was very close with is sending me signs . Specifically numbers. His birthday was July 15th. I found out I had cancer June 15th. Then, at the hospital they sent me to room 15 in the ER. Then my surgery was in operating room #15, when I saw that I smiled and said hi pops!. There are a few more situations with the number 15 but I don't want you ladies to think I'm a whacko lol .
All this to say, is sure I can chalk it up to coincidence, or as a friend puts it godincidence. Or maybe I'm just searching for signs. It has brought me hope for a cure.1 -
@Hooodith I am sorry to hear you are experiencing those migraines again. They can be quite debilitating when they occur.
In answer to your question, they should be available here on the website for viewing. Alternatively you can go to YOU TUBE. I have checked before sending this to you and as of yet, it is not up for viewing on that platform. I am positive it will be with a week or two.
I will alert everyone once I see it either on our platform or on YouTube
I spoke on the 2nd night in conjunction with Paula on Legacy work. So, if you are interested in the topic or curious as to putting a face to my name....there I am.
Sounds like you have a wonderful supportive husband who is willing to go to great lengths to make you as comfortable as you can be. That is amazing. I am thankful that the changes in diet may be helping you.
Sorry to hear there are some mixed messages you are receiving and that the pushed back chemo time is upsetting for you. A couple weeks away from having your stent replacement. How are you feeling about it now, ready for it or no? I know you weren't feeling ready before and hope that has changed for you.
Your Remembrance Day celebrations sound wonderful. Thank you for the detailed instructions and how to pick you out regarding your music. I plan on checking it out sometime this weekend.
Take care of you and we will chat soon!0 -
@melissa I agree with JoanEG and believe it is your "pops" sending you messages that everything will be ok.
I forget if you said or not, have you been deemed palliative? You mentioned before that you were Stage 3B. Do you know the subtype? If you have already mentioned this, kindly forgive me as I have forgotten.
When going along the first line of treatment, it is a lot of unknowns for sure. When you are finished you will face a whole new set of questions and feelings and one of them will be "what next?". The feeling of wondering what each and every little symptom is and what it could be will remain. I feel we become "hyper-sensitive" due to our past experience. If you are deemed NED, go live your life to the fullest. If it doesn't return, then you keep on doing it. If it does return, then you got to have a little reprieve and 'forget' about it for awhile. I did it that way and am glad I did. I don't regret any of it. I made sure my hubby had a great 50th bday without worrying about me. Those are the things that are important to me.
There is some amazing research out there, particularly for those with HGSC. I want to believe that once they have that figured out, that it won't be long for the rest of the subtypes to come along. I have seen recently as well that they are promoting speaking with your Gynecologist about doing preventative surgeries. Not sure what current stats are with that and numbers for diagnoses. It may be awhile before we find out that info. Promising is what it is. This is one of those diseases that sneaks up on you. I could chalk all my symptoms up to pre-menopausal symptoms and had been given an "all clear" from the Gyno and wasn't to be seen for 3 yrs. Well that didn't work out but what is one to do? Hopefully, awareness and knowledge will help others.
Hope you will have a restful and/or enjoyable weekend. I wish your last chemo session to go well and that you look forward when it is completed.
Take care1 -
@JoanEG
Your Meme! It is so true. Perspective on how one looks at things. There are days though that can be dark and we will see the cactus. Hopefully those days are brief for many. If they are not, seek help and reach out to get some support.
Take care, all!0 -
@Strongwoman thank you again got the wise words. While it’s fine for me to post that meme I recognize some days we sit in the cactus. Sometimes it’s okay to not be okay but it’s important, as you said, to reach out for for help and support. ❤️0
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@Strongwoman my subtype is clear cell. I have not been deemed palliative. My surgeon, I believe is approaching my treatment with intent to cure. My chemo was started less than a week after my initial surgery probably due to my subtype but I'm speculating.
Also, I remember my surgeon in a somewhat upbeat tone in recovery room say " you have endometriosis" which I knew but my case was very mild. Still transformed into cancer which I am embarrassed to say I did not realize could happen.
So, ladies! If you have family members with endometriosis please tell them to be extra vigilant.
Strongwoman you couldn't be more right about worrying about every little discomfort. Before cancer I was already a worry wart about every little body discomfort so I can only imagine now and moving forward.
Staying busy and exercising does help. Here in Montreal we got snow yesterday so I was disappointed I couldn't go for my walk. Enjoy the weekend ladies
@Strongwoman thank you for your words1 -
Hi everyone, @Hooodith asked how to watch the National Symposium recordings. Here is the link in case you're interested! https://www.youtube.com/playlist?list=PLaSUgkPcYW_rjpla5SpooGGIsTZ5dHYDv
All of the sessions shared are there. I hope you'll be able to watch.0 -
I had to share. I can’t say enough about this gorgeous Afghan that my niece, Sabrina made for me. It has the teal ribbons for ovarian cancer . If you look closely you will see the words: Strength, Believe, Friends, Cherish, Spirit, Hope, Conquer, Peace, Love, Family, Faith, Fight, Cure. It will keep me warm and surrounded by love during the hours spent in the blue chair. It warms my heart and soul as well as my body.
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OMG @JoanEG! That is beautiful. She is very talented. What a wonderful gift and so thoughtful. I will ask you this: Did you cry? Were you tearful? I know I would have been.
Thanks for sharing a part of you and your journey! 1 -
@Strongwoman I cried like a baby. 😭1
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I definitely would have too @JoanEG
How could you not? The thoughtfulness, work that went into it, the power of the words and that it was made with love and intent. She is a beautiful person to have done this for you. 2 -
Yes she is @Strongwoman. She is one of the kindest most caring people I know and Imlove and appreciate her very much. ❤️1
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@Strongwoman
Well, this is very strange. I woke up this morning and have been gaining weight almost as quickly as I lost it. I did supplement my diet a bit, but not enough to explain this gain. The only other thing I added was a green tea with lemon and ginseng (Tetley) once a day, and I’ve only been taking that for about 3 days. Weird.I am waiting to hear back on a Phase 3 trial.…adding Relacorilant (oral) to weekly nab-Paclitaxel (Abraxane). I still have questions, but will wait until I find out for sure that I’m eligible.0 -
@GloHo Strange indeed. It is a symptom which I know you are aware of. Note it and any bloating you experience with it. Notify your team. It was a symptom of mine when I recurred. Now I am dropping like no tomorrow. To the point people around me are commenting on it. Symptoms indeed.
I will pray that you are eligible and have options left to try. This unrelenting disease makes our bodies and mind go through all kinds of things. I was looking up any trials for myself and even out of the the USA. Due to the toxic reaction I had from the MEK inhibitor it disqualifies me from most of them. It is what it is.
So keep on finding one's for yourself and see what happens. You are amazing to keep finding them and seeing if they're viable options for yourself
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@Strongwoman
Thanks. No bloating, but thanks for the reminder…easy to forget or miss some symptoms.I just saw your presentation…very poignant. Thanks for sharing.Sorry to hear about your current weight loss. How are you feeling overall?0 -
@GloHo Thank you! (Presentation)
As for how I am feeling, I am ignoring it for now. Don't want family to know much yet. I have my niece's wedding tomorrow evening and then I am headed back to my parents place in Belleville. I will be staying there until my hubby comes on the weekend and we will return on Sunday. That week I get back is full of appts. I have bloodwork and f/u appts. If my creatinine has dropped again, I will be speaking with my palliative doctor. If it is down, there will be a flurry of appts/consultations regarding my left t kidney particularly and if now is the time to do a nephrostomy. If it is time, she has mentioned before it will be done in a couple days. So, I keep quiet so family doesn't get overly concerned and I will deal with the info when I am back and have results. If it has to be a nephrostomy well then ok. I have held it off for a year now and they originally wanted to do a double sided one. Since having kidney function testing done we know my right one was functioning at 24% at the time and my left 76%. I know it has changed based on my left sided back pain and urine consistency (bubbles) and slow trickling stream. It is what it is. Enjoy until I can't and have to stay around home more. Nephrostomy will keep me down a couple of weeks as I get used to it but after that I should be fine. Might help with the back pain. In the meantime, I use the CBD my brother-in-law grew for me, take my other meds and talk openly and honestly with my Oncologist and Palliative doctors.
I made caramel stuffed snickerdoodles with my son this morning. You know so he could see what a pain it is to open all those caramels to make them. 😉
Making stuffed peppers for dinner. Last meal I make until I go as wedding is tomorrow night so I am off the hook there. Yay!!!
How are you doing with all your information?2 -
@Strongwoman
A wedding! That should be fun. Will be nice for you to have the week with your parents too. And the change of scenery may be refreshing.
I hear ya. I like to get the info and then have time to process it by myself…how I feel about it…consider options…just work it through before I share it. Feel like I at least have some control of the information and I don’t have to consider others emotions on the first go round and they don’t have to see my raw emotions…just my tempered ones.
Sorry to hear about your kidneys. I can’t believe you were able to put it off this long. We are much alike in dealing with things straight up when it happens or is needed.I’ve never heard of caramel-filled snickerdoodles…sound very sinful!!
Stuffed peppers…great idea for dinner. I may just do that one. My hubby does 99% of the cooking…good thing cause not my fav thing to do!! I have a few dishes I make…so when hubby needs a break, I’ll pitch in. So grateful to have the option.My mind is muddled…hard to focus/concentrate. My sleep has also been off…makes it harder too. If the trial is a go, it’s going to be a whirlwind to get things in order. It was so seamless last time because it was at my centre. Not sure what process is otherwise…will see. Also anxious to get started on treatment, so I’m hoping it won’t take too long to get started on trial. If I’m not eligible, my first treatment is scheduled for the 21st.Have a great time at the wedding!!0 -
@JoanEG. What a lovely blanket! Your niece must love you very much. What a sweet gift.@Strongwoman. Sorry to hear about the nephrostomy, but you seem so calm about it. Would you believe that my urologist actually threatened me with one? Made it sound like a medieval torture. It was when I was complaining about the pain from the stent after the first one. One of the things I hate about having cancer is the vulnerability to people without empathy. I can’t just walk away. Nor can I say what I have on the tip of my tongue. Always so polite. Blech!
But I got a call from mon onc yesterday, a Saturday. I got a yes for reducing the dosage of the chemo, but he would not prescribe more painkillers over the wishes of my NP. He did mention long acting though, and it sounded as though he was going to recommend them to her. So that might work. In any event, I am taking the fifth cavalry with me to see her on Wednesday. My husband speaks softly but is quite persuasive when rattled, as he is when I am constantly in pain. And she likes and admires him so I am optimistic. I don’t often use the big man strategy, but this definitely warrants it. So next Monday is the stent replacement and the following Monday is my fifth chemo. Mon onc asked me if I wasn’t excited that I was near the end of this chemo round, and I said No. I wanted to say “ No, I am not excited about this. I am not excited about anything to do with having cancer. I am grateful that there is treatment, but I get excited about my grandchildren’s educational acheivements, when my son gets a job that really suits him, when my friend gets to go on a trip she has been looking forward to, and when my brugmansia blooms for the first time ever. “ I think he was a bit surprised and put me down as a Negative Nelly, but I am fed up with the positivity trend that seeks to deny reality. I did, however, thank him for calling me on his day off. Thats dedication.I am looking forward to watching the symposium, thanks for the link. I am plagued with headaches at present but will watch when I am pain free.0 -
@GloHo @Hooodith
Thank you, both! I was highly encouraged to say yes to a nephrostomy. The Urologist even wrote in his report that I was not having it and the risks involved. You see, I am quality of life person first. Having a double nephrostomy is not that at all. I would have to sleep on a side only and make sure I was careful. Yes, I still would have to do it with one but not same carefulness as two. I am 51 yrs old....it would change my life drastically. I wasn't ready for it then and they were working (not fully buy functionally), the kidneys that is. Plus no one at the time could tell me to what degree either one of them were working without making guesstimate. So, I talked at length with my Palliative doctor about it and that I would agree to it when it came time before it was too late to do anything. Now here we are. I guess I am calm about it because I have had a year to think about it and live. I didn't like they were trying to force something on me that I wasn't ready for and that no one could give me good enough answers that I aligned with. I am thankful I held off. Who knows, what the bloodwork will show this time. I am ready either way now.
I get when you say they used it as a threat. It's exactly how I felt and like I was hurrying up death or something. I understand when you say you aren't excited about ending chemo. For me, I was but my type doesn't respond well to subsequent chemo so I knew that it would finish. With your type it doesn't. No, they don't understand we aren't excited about some medical things but we are excited about life....the family/friends around us and all these glorious things we get to participate in. Those are the things that keep us going. I have already made a deal with my body. If it's going to give up (which I hope it doesnt), it can't until the New Year. Away from the holidays and important dates for bdays etc. Let's hope it listens or says.. nah....you have a while yet!
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