Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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I missed the chat because I am dealing with tooth pain and got in to see the dentists today.They want to pull it and I have to discuss that with my oncologists.
I am so sad to hear about fearless moderator.My heart goes out to her family.
I am enjoying the sunshine we have still and not looking forward to the rains. I am sure , when it starts, it will rain for days. I am getting out as much as I can.Hope you all are doing ok. I hope my news in 2 weeks will be good. All the CT scans, echo cardiogram, and the ultra sounds are all done.Next, the results.
Fall is in the air.0 -
I did not realize that @Fearless_Moderator had passed away. I noticed that she hadn't commented for a few weeks and I just assumed she wasn't well.My deepest sympathy and thoughts and prayers goes out to her family. When I joined this site in October 2020 she was the first person to reach out to me.She was so knowledgeable, kind and supportive. She was an awesome and amazing person and despite her own personal battle she was always there for all of us when we are having tough day.I will miss her terribly.1
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@Eileen By your post, it sounds like you were heard, have more info and your doctor is being proactive. Does that make you feel good?
I think it all sounds positive and you have an action plan.
Rain for days is good for the earth but not for ourselves. And good for the ducks!
What are you reading? What will you do with yourself on the rainy days?1 -
@Eileen My mistake. No rains your way. Cooler weather. My Aunt told me that tonight here we are to go down to 3 degrees tonight.
Sweater weather is coming0 -
@babs272 That does not sound comfortable. Are you in pain from it? How long will you have to wait to ask the Oncologist? 2 wks?
I am sending good vibes that all your result are good or stable.
You are expecting the rains. What will you do with yourself during it? How long do they say it will last?
Yes it is very sad about Fearless. She very much embodied her name.
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Lol @Strongwoman. Yes no rain still very dry. Temp still in the high 20. Only goes down to maybe 9 they say. But yeah maybe 4 oclock in morning probably.
I am reading alot of romance novels. Just to pass the time. Also watching ctv throwback shows over like.. one day at a time. Bewitched. Etc that type of shows. Right now. Oh but i guess i forgot to tell everyone exciting news. My youngest daughter who is 30, has been going out with the same boyfriend since she was 18. Living together. Everybody always said when u getting married. Well they just left for a vacation to blanket creek provincial park (to celebrate their anniversary of how many yrs together) which is in Revelstoke with their rv.
Well before they left, he dropped by and aaked my permission to marry my daughter. Omg u cannot believe how happy i was. He asked if he could have my ring. So i said yes. I know her finger is bigger and it wont fit but still. So he said don't tell anybody i want to ask her on our camping trip. So here i am holding in this news not telling any of my other kids. They get back on the sept 24. But i felt hey safe to tell it here. So now i have hopefully a wedding soon.
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@Eileen That is so exciting! You must be on pins and needles to hear about it all. How wonderful for all. So sweet he first asked permission and what an honour to have him ask for your ring as well. Your daughter will cry. I would! So touching all of it. I can feel the joy from your post and it has filled me up with so much happiness for all of you. Thank you for sharing your little secret.
As for books, I, myself am reading a little lighter lately as well. I feel I go through periods like that with reading. As for watching shows, I finished tonight the latest season of Virgin River. Someone told me the other day there wasn't going to be a fourth season. By the way the ended there has to be! I won't spoil it for anyone watching it. I love the scenery in the show.1 -
I am very sad to hear about Fearless, Kathi passing. She has been a great support to me also, always upbeat and positive. She will be remembered just as Tough as Teal with her great sense of humour.
@Strongwoman thank you for your notes, links on grief which I will be re reading over next few days.0 -
@Bojenka Your welcome. How are you doing these days?0
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@Strongwoman
It’s been a challenging summer with the move and new house, but we are settling in and I am looking forward to this fall. All this happened while I had 6 chemo infusions, so now that is done I am looking forward to few weeks off medical appointments and next is CT scan on 21 October. I too love going to markets and cooking, going out with friends. I feel grateful to have this time.0 -
@Bojenka I understand that. The move, new house etc. We are still in our rental, we gave the LL an offer and they have rejected it. It was for the upgrades we did in the home. Now they want the upgrades but don't want to pay for them. We are now in it for the long haul. We have done as much as we can to mitigate and resolve the situation. We continue to look for homes and plan for the future. Only pressing thing we are attempting to get LL's to resolve are real issues with septic. On the weekend we had a 2nd leak occur from doing laundry. Our paralegal is working on that one.
You are an amazing woman being able to do that throughout chemo as I don't know if I could have.
So CT scan soon. Do you have any idea or thoughts on what it might show? Sometimes we are correct with our thoughts and sometimes not. I have CT scan today. My CA125 numbers have crept slowly in the past month so not sure what I will see.
It is a wonderful time to be able to plan ahead (cancel if needed) but to look forward instead of feeling like we are stuck in the middle moving neither forward or backward.
Enjoy the sunshine while we have it!0 -
Hello Ladies
I was very saddened to hear about the passing of Fearless. I joined this group January 2020 and she was the first lady who welcomed me and supported me in my journey. She encouraged me to become a peer support volunteer and I did my best at that for a short time. I am NED for over 3 years and talked to her privately about being on this site as I was no longer going through treatments. She thought I could give hope to the ladies however I had to bow out. I do pop on periodically and read all the posts. You ladies are amazing!
My sympathies to Kathi's husband and family. She was truly a wonderful woman who valiantly lived with cancer. She was intelligent, caring, positive and always hopeful. She will truly be missed in this group.
Let's carry on and be 'Fearless' in our journeys.2 -
@Strongwoman
I am truly sorry you have to go through all that with your landlord.
It’s a very difficult real estate/rental market at present with no stability for people. I had help from amazing friends with packing and moving, stayed with my sister for a couple of weeks before my incredible husband got the new house liveable for us.
As far as treatment, (3rd chemo series) I found recovery much longer between infusions so much that I asked to delay the 5th treatment. My bloodwork numbers were good but I had very low blood pressure and fainted in a restaurant which got me scared. The CT scan ? I am not sure what to think whether good or bad. The pain has subsided so hoping for some shrinkage or maybe stable for few months. Would like to go Florida in December but I am hesitant to book until after my scan.
Do I remember correctly that you went kayaking this summer ?0 -
@Bojenka Thankyou for your kind words about finding a home and sympathizing with how I am feeling. As you know it ca be difficult. We came home yesterday afternoon to the bylaw officer having affixed a notice on our door. Funny he knew our full names and our email addresses to affix to the notice. Can't be the LL at all eh? So that is our new game we are dealing with. What I found annoying is they did it on a day they knew I had medical appts and waited until after I left the home. Anyways, I digress we will make it through it and come out the other end.
How smart of you to know to ask about delaying your 5th treatment. It goes to show we need to listen to our bodies as they do give us indicators in which we may ignore at times and other times not. Fainting or being light headed can give us a scare and thankful you recognized it was a sign to rest and delay.
The CT scans....always a crap shoot of what we may find. They have to use the ultrasound to locate a vein for me. I am thankful that it was fairly quick and painless yesterday when I went. If Florida is important to you and going, talk to your team. Often they will delay a treatment so you can attend something as well as give you tips on what you Wed med wise before you go. As far as insurance is concerned, it is a roll of the dice and lots of phone calls.
I wish you the best, would love to see you go to Florida and take all the pictures you can. Use it as a tool to get to where you want to be and create all kinds of memories along the journey.
In the meantime, take care of you and find some activities to help fill your days0 -
Hi everyone. I probably won't make it to today's chat. We are heading to St. Jacob's market and will probably make a day of it like we so often do on our day trips. It is supposed to be a nice sunny day here...perfect for a day outing!
I will be updating my Clinical Trial journal with some new and interesting information in the next couple of days. I just need to speak to my oncologist before I start getting into something I have never heard of or experienced before.
@Strongwoman So sorry to hear that your housing situation is continuing along this path. Hang in there.
@Eileen What exciting news!
Have a great weekend.0 -
@GloHo Thank you. Have fun at the market. I go by 10am to the market in St. Jacobs. I used to go earlier but now that my friend has an infant, we go a little later now. Can't wait to see what is out there this week. I am hoping fall mums. The mushroom guy there is the one that suggested those turkey tail mushrooms to me. I have told both my Oncologist and Palliative Doctors about the turkey tails and they are onboard with it. Letting you know in case you are interested.
Enjoy this beautiful day we have been blessed with. Already this morning it did not feel as cool as previous mornings.1 -
Good Afternoon Ladies!
What a beautiful day we have been blessed with here in Southern Ontario. Both my son and I commented early this morning at how it was not as cool as previous mornings. Like @GloHo, I, myself go to the St. Jacob's market pretty much every Thursday. Fall is my favourite for going as I love to see the fall mums and all the bounty that this time of year brings. The smells of fall in the air, sweater weather, cooler nights, beautiful days in the sun and the cooking/baking we do at this time of year.
How do we start today's chat? Many things to consider when deciding this and what is felt might be an area of interest. After much thought of deciding on how to start this week, I have decided to speak about our forum. I have been noticing that some have added comments as to "hope this ok" and "hope I don't offend anyone". First I will say, we all are very cognizant of not causing harm to anyone on this forum. I feel we are all careful with wording so as to not offend anyone nor topics that may be considered offensive. This forum is a safe and inclusive place to say what is on your mind. That could be how you are feeling, course of treatments, side effects, emotions or mental status, quality of life, prognosis, death and dying to name a few. Whether we are on an upswing, stable or downward slope, we all matter. There will not be a time when we are all in the same page regarding some of those topics. If you are doing amazing and want to share it, scream it from the rooftops or celebrate something; well that is wonderful. If you feel you are stable and your state of mind and body is as well; you want to share this and what it feels like well that is wonderful as well. For others they sit in either knowns or unknowns, have been given poor prognosis, have no treatment options left and are feeling low and unwell. This is a reality as well and is welcomed to share with no judgement for any of it. We all will or have gone through some or all of these stages. It is from learned experiences from others, research on our own or chatting that we empower ourselves to assist us in getting through, persevering and creating lasting memories or situations that assist each and everyone no matter where you are in your journey. There is no right or wrong especially when it comes to feelings. We all have them and not all of them are happy thoughts. I refer to @mjmck21 post about the imagery she created in her last post. The reality is no matter how much support we have around us regarding family and friends, there is this small (or big) part of us that reserves or shields some thoughts/emotions from them. This is what this forum is for. Embracing it all even if you are not on that leg of your journey. Our state of mind on any given day can change and we all go through some version of anticipatory grief made real especially when we hear of one of our own Teal Sister's passing. That is when we relate and contemplate our own journeys and outcomes. We find strength in each other and support one another. This is what I feel is the basis of this group. Not feeling it that day, ok. Talk about it, follow along by reading or join in. Feeling great, wonderbar. Join in, rejoice and share all that is good in your world. Living in stability with basically fence sitting, ok. Same thing talk, share, follow along or join in. All of them your decisions. So ladies, if there is something on your mind, want to see more on a certain topic, supports etc then kindly reach out either publicly on this forum or in a private message. Let's make this site what you want it to look like, share and obtain information from.
How was your day? week? How is treatment going or not? How are you feeling? What would you like to share today? How can we support you on the journey you are on?
Let's talk, open up and support one another!1 -
Thanks for this @Strongwoman. Its difficult to know if talking about the feelings of isolation (which is what I was describing when responding to @Hooodith s dream) are not sensitive for those who are also struggling with it. I know I did not want to deal with it in the beginning. But I also know that saying it, (whatever it is), is not just helpful to me but usually helpful to others who may feel the same and/or who not have the words yet to describe what they are going through. I have had several sessions with a very special psychotherapist and being given space to use precise language and imagery really gave me power and insight into my situation instead of the rumination and spinning thoughts that were creating downward spirals.0
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@Strongwoman
Very well said!! As I continue to tell my friends and others going through cancer treatments (Ovarian or otherwise), this whole journey is best described as a roller coaster. We can't predict the ride, only treasure the moments we are on top and manage through the moments we are not. This forum is for sharing as much or as little as we wish and I truly believe that while we may not all have the same disease or the exact same experience, we all have our own individual moments when we need to "let it all out" and also hear from people who have gone through to some degree or other, what we have. Even those who are NED didn't wake up one morning and get there. They also had a journey and we share in their success.
So in that spirit I am still feeling amazing. CT on Sept 29th. Dr. didn't do my CA125 last week. She thinks my huge jump may be because of the active Covid I had when the blood was taken and I suspect that she doesn't what to take away from my positivity just in case it wasn't. Can't do anything about it so just wait till the CT. I like that kind of thinking.
So....... yesterday my best friend and I went golfing!!! I got out three times last year but not this year and wow! I still have game!! LOL!!! We quit at 15. We could have finished 18 by why tire ourselves out. The weather is supposed to be excellent next week as well so we are golfing Wednesday and Thursday with an overnight stay at her children's cottage. Tomorrow night my husband and I have been invited to a dinner boat cruise in the Toronto Harbour celebrating the 10th anniversary of the company my son-in-law works for. with staff, clients, friends and significant others, probably close to 200 people. Live band, food stations, fancy cocktails. As I said to my oncologist Friday, this is the best I have felt in four years and that was before golf and the boat cruise to raise my spirits.
Yes, I have a niggling feeling something might be going on with the cancer, but for now, it is put on the back burner. Enjoying life to the fullest as we all try and do.
This is a long post, but I need to say how sorry I am for the challenges with housing and treatments and everything that our members are going through. On top of everything else, there should be a rule that we don't have to deal with anything else!!!! Having said that, particularly with the landlords, when they go up against people who are dealing with what we are, they have their work cut out for them. We are some of the strongest people I know.0 -
@mjmck21 Your welcome! As you say "Its difficult to know if talking about the feelings of isolation (which is what I was describing when responding to @Hooodith s dream) are not sensitive for those who are also struggling with it." I not sure how that would negatively effect someone. I guess possibly it may make them feel worse but I would like to think that they see the positive: I am not alone. Someone finally described what I have been having difficulty getting out how I feel accurately. My thoughts are in line with what I am going through.
What a wonderful experience you ha with your psychotherapist. I think it would lighten your heart and mind.1 -
@Taita Well said. I am super excited for you and hubby about the boat cruise/dinner tonight. I have done one in that harbour and it was so much fun. You are doing amazing, enjoying what you can while you can. Denying yourself pleasures while waiting for a result would be so detrimental to our mental/emotional part of ourselves. The golf sounds like it was fun as well. I am hoping I might get out once before the season closes.
I had my CT scan Tuesday and am waiting to see my results come in before my appt on Monday. Not sure what I will see but looking forward to knowing one way or another.
I have spaghetti sauce on the stove for tonight. I found fresh Okra at the market so looking forward to cooking that another night.0 -
@Taita I'm super happy to hear how good you are feeling and everything you are doing. I had a similar summer and its such a high isn't it. One we may not have expected. Roller coaster it is. Also to everyone going though the landlord issues. It's stunning to me that these people could not have some sort of compassion and empathy but it's such a deeply flawed system. I wonder if any OCC staff are on here today if there isn't a resource that could be put together to help start to navigate this issue. In the end we need to use the landlord tenant resources, policies and procedures available to us and we do not want to duplicate but they differ across the country. Perhaps there is a starting navigation tool for those with cancer and catastrophic illnesses that could be shared.0
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perhaps it already exists.
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@Strongwoman
It does seem like the time of year for comfort food like spaghetti. Haven't really had much Okra but I do know that cooked properly it can be delicious. How do you cook yours? I cooked up some beef bones the other day and made stock for soup tonight. Love the fresh fall vegetables. We can walk to the farmers market on Saturday so that is always a treat. @GloHoOur daughter and her wife live in Kitchener so we have gone to the St. Jacobs market a few times. It is so big and a bit overwhelming sometimes, and I am not sure if it is the same mushroom person, but we always get them at the same place!
I have a funny story to tell and hesitated to tell it but I think you ladies will find it quite humerous. (Not for the average cocktail party). LOL!
When I got back from golf I stopped in at our daughters across the road to see our little granddaughter and to use the washroom (our elevator is still out (since June and looks like not back in operation till April)) before I climbed the five flights. Anyways Amira always wants to come into the bathroom with me. She asked and I said yes (she is 2.5 years old). So.... because I wasn't sure whether the bathrooms on the golf course were open and because my bathroom needs can be unpredictable (understatement) I wore what I lovingly call my "special underwear". Always/Depends. So I sit down on the toilet and Amira says to me "Taita (gramma) are you wearing a diaper or underwear? I said underwear. She looked at me again and said "are you sure"? It was all I could do not to burst out laughing. It is just life now and I am okay with it.........1 -
goodmorning from B C
I am finishing my 6 th chemo today and more to come.
my tumours are shrinking but we would like to see them shrink more. Also my numbers are up a bit and. Not sure the cause.I hope everyone is doing well on treatment.1 -
@Taita That is both cute and funny! So observant for 2 1/2 yrs old.0
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Hi everyone, @mjmck21I'll bring this thought forward and see what I can find out.mjmck21 said:@Taita I'm super happy to hear how good you are feeling and everything you are doing. I had a similar summer and its such a high isn't it. One we may not have expected. Roller coaster it is. Also to everyone going though the landlord issues. It's stunning to me that these people could not have some sort of compassion and empathy but it's such a deeply flawed system. I wonder if any OCC staff are on here today if there isn't a resource that could be put together to help start to navigate this issue. In the end we need to use the landlord tenant resources, policies and procedures available to us and we do not want to duplicate but they differ across the country. Perhaps there is a starting navigation tool for those with cancer and catastrophic illnesses that could be shared.2 -
Hello @babs272 Good Afternoon here and welcome to the group. That is good news about the shrinkage and the numbers....do your best not to get hung up in them. Sometimes with HGSC they fluctuate, other times the size of a growth may minimal which attributes to the number but at other times not associated at all. As my palliative doctor says, if any of it is good news...take it and run. Taking the little rays of sunshine we have are good for our souls. Hope that may help you4
