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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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Bye for now ladies. Have a great rest of the week and weekend!0
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Thanks all. Have a great week!0
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@Tinazzie
That is so wonderful you were able to experience and participate in such an eventful moment in time. Amazing that you have surpassed your own goalpost too.
Keep at things, think about what I posted about letting other help you. I know I certainly have been thinking about it. I know they can't do the writing unless I dictated but for now that is a precious thing for me. But if it comes time that I need to, I certainly will be asking.
Take care of you and will chat and catch up next week.
Unless of course you post something sooner.0 -
Well missed last weeks chats. Will try this thurs. But already this week turning out not good. Trip to the hospital last night fever and chills and worse stomach pain ever. On meds for severe avid reflux yeah not working. Think its h pylori again.
But they were fast yo get everything done for me i sat outside in hall because streaming was packed alot of people were out their.
Turns out nurses did not know people were in the hallway chairs to until a dr came out looking for me. Oh we been calling you for a bit but come with me i know why your out here. One word from him...she is a chemo patient has a fever. Had 2 nurses taken swarms of blood immediately went for chest xray then ct scan then she put me in a private room away from everyone. Ok spend the night. So short staff they don't have a radiologist to read the ct scan till morning. But dr was concerned i was getting infection so she put me on fluids to flush my kidneys and put on antibiotics drip.
Ok well nothing concerning on ct that would explain the stomach pain. Dr couldnt even touch my stomach without me being very much like screaming the night before.
Ok well am i going to get to see a kidney specialist now to gfr down to 58. Creatine up to 95. Lady doctor looks at me and says something like well I'm not too concerned about it. Like what!!!. Then she says oh just not sure why you have high white blood cells. I told her i mentioned to the nurse ladt night I'm on filmgrastin injection for 2 days 48 hrs after chemo. Well dr then says, oh ok i didnt read the nurses notes!
Ok like that's not good. I thought man like communication between dr and nurses are suppose to be no 1 in hospital concerning patient care.
Ok sends me home told me to follow up again with my gp. I look on line at my blood work . well my wbc is 25.4. Like holy crap.
So i got on thr ph with my oncologist nurse spoke to her she going to have my oncologist go over the tests etc on her end.
On the other hand my son has same gp as me he has apointment tomorrow i could only get one for thurs. He said mom im calling them and we are swapping apointments. U take mine ill take yours. Oh that made my day. And my daighter dtove me home and my other daughter was here so we spend some time talking. My oldest daughter gets home and sends me a text msg. Mom would u mind if i had a lady come in for a few hrs and clean for you?
Omg like not going to refuse that.
Well just thought i would share my start of the week with everyone. Resting on couch. Hope everyone has a good week.0 -
@Eileen
I am sorry to hear about your stomach pain, infection and the hospital visit. It takes a lot of patience on our part to wait for results, wait for doctors due to shortages. It’s really is a lot of waiting. And then when you see a doctor to have to tell her why something is happening.
I had a similar situation when my doctor was away and the oncologist filling in was astounded that I had 8 chemo sessions instead of 6. It was in my file but she didn’t read it.
On the positive side your children really came through for you. That is really wonderful to hear. Particularly someone to help clean
Like you, I have been experiencing severe pain mid back and right flank. At first it only happened at night but now I get the pain through the day as well.
Saw my oncologist on Friday and he has referred me to palliative doctor for pain management . Do you have palliative care doctor ?
I was also referred to see if I can get radiation for one of the bigger tumors which we think is pressing on a nerve and causing the pain. Now waiting for both appointments on Wednesday.0 -
Good Morning to All,
I am letting you know that I will not be in the chat tomorrow. I have a specialist appt at that time. I wish the best for all of you out there and hope you have had a good or better week than last week. I, personally, have been going through a lot of emotional ups/downs attached to anticipatory grief. I had a good chat with a friend yesterday and it helped. It is difficult, all of this, one friend in Hospice, one heading into radiation and if does not work there are no options left and knowing for myself that should radiation be off the table I will be in the same boat. Thinking and thinking of what I need to do and remembering to enjoy along the way. It weighs heavy especially when I have caregived all my life. To now ask for assistance is extremely difficult for me. To me, it means admitting I am getting weaker and accepting that fact more than those around me helping. I will pull through it, it is a process just like everything else. Not sure where you are all at but it is where I am.
@Eileen I am so sorry to hear you had such a time at the hospital and it must have been very frustrating for you. I am glad it is behind you now. What a wonderful thing for your daughter to offer and I bet it gave you a sense of pride and relief as well. I hope you have continued to rest.
@Bojenka I can speak and advocate for Palliative Doctors. Mine has been an Integral part of my team since last year. I value what she brings to my team and everything she has done to assist in making this a smooth transition for me. This includes having chats with my family (hubby and boys) and discussing openly what is going on, how they feel etc. We are probably doing another one of these type visits after we get info from tomorrow's appt. It is time again and I want them to understand where I am headed, make sure they know how to find resources for themselves and biggest of all are as prepared as can be as this disease progresses. I am in the same boat as you regarding pain and radiation. Only thing I am looking forward to is the fact the facility I am going to tomorrow has a CT scan that is supposed to be superior to the one I usually use. This means if they want more imaging, I am for it especially if it will give us a clearer picture as to what is going on. I will wait to hear from you as to how things go for you and will share my experience once I know more.
For all others out there, know you don't walk this walk alone, we are all here, walking right beside you. Some are further ahead and some behind but know we have been or headed in similar directions at some point in time.
Take care of YOURSELVES and I will take care of ME!!
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This Cancer is getting so hard.. I know I am having a very difficult time with it this time round.
I send you, Strongwoman all my hugs your way. You are a true, strong warrior. I admire you for that.
Take care of you and we will be ok. Stay strong. Thinking of you.1 -
@Eileen
Sorry to hear everything you have been going through. I hope that your health has improved over the last couple of days? You have such a loving and supportive family! You are truly blessed.
@Bojenka
I hope your visit with the palliative doctor was successful in helping you manage your pain. Who do you have to see regarding radiation? I just thought it would be your oncologist, so I am interested in hearing more about this process as well (if you don't mind sharing) because I want to approach it at my next visit.
@Strongwoman
I hope your specialist appointment goes well tomorrow. Sending positive vibes your way!!
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@Strongwoman
I hope your specialist appointment goes well. Your honest but always upbeat voice will be very much missed today.
@GloHo
My oncologist referred me to radiology in Credit Valley hospital where I had my surgery and chemo. Radiation is not normally done for ovarian cancer but he recommended it for me because one big nodule on the pleura (lung sac) is pressing on a nerve and causing severe pain. The other nodules are stable so we decided to keep chemo for later.
I would be happy to answer any other questions you have.0 -
Hello all, I won’t be on the chat today as I am getting a much needed massage. We had a wonderful trip and I will include a couple of pics. Glad to be home and was back in treatment Tuesday. CA125 is quite high (ugh) and the ascites has reared its ugly ahead again. Worst since before my surgery 3 years ago. Hopefully after I get a few treatments under my belt it will settle down. 🤞. I fear I am coming to the end of the Taxol Avastin round (almost a year on it) and we will know for sure after my CT April 10th. Can’t dwell on it, just need to keep icing forward.Enjoy the sunshine we have here in S Ontario tomorrow because we are in for a storm tomorrow! Crazy! (Pics are of London and Cyprus) Have a great week!!
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To those west of Ontario, good morning and those in and east good afternoon. Regardless I hope it's a happy Thursday March 30 for all and you're all welcoming spring in some form.
We actually had a snow blizzard here much of yesterday afternoon. Fortunately most of it has melted already but I don't we've seen the last vestiges of winter yet. Me.....delighted I'm still here and have no reason to beiieve I won't be around to enjoy the nice weather when it comes.
@Taita ,so glad you were able to send a note and some pics from your trip. I"ll scroll back to enjoy them bur in the meantime enjoy your massage.Tiime for our chat ladies so welcome again and if you're there, please say hello and tell us what's new with you or what you want to share......
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Hello all! Once again, I can’t log on to my computer- and find it hard to type and sync into the teal chat on my phone, so may not be on for long. Really need that iPad I’ve been dropping hints about for my upcoming birthday! 😄
Wanted to say how sorry I am that so many of us are having a difficult time - hearing about limited choices and trying to figure out how best to move forward. But then again, as always, there is so much support, and positivity within this community, that there is always something new to learn and be inspired about!
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@Tinazzie forget the hints and send out an email with make, model, link to purchase and a comment telling the recipents to let you know delivery date so you'll be sure to be home to receive it LOL. Glad to have you back in touch with us gal, but not glad for your health. Stay as strong as you have been.
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@Taita Thanks for the beautiful pics!
Hi everyone. Well...I was back at self-advocating today. I have been waiting to hear from the medical oncologist about an appointment...it's been over a week and I decided that I wasn't waiting any longer so I called the cancer clinic this morning and my nurse spoke to him directly. He is aware of "me" 🤣🤣 Unfortunately, there is a process to get appointments set up...so, still waiting! I haven't decided how annoying I want to be yet, but I really can't afford to "wait" any longer. If I haven't heard anything by Monday or Tuesday next week...they'll be hearing from me again. In the meantime, I am preparing a list of all of the questions I have for the medical oncologist when I do get my appointment.1 -
@Tinazzie you're sure right about so many of us reaching ends of current treatment and looking for solutions moving forward. I've noticed the activity on this site comes and goes in cycles. Needless to say we get very active as our members struggle to understand thsir status, learn about treatment options and in some cases deal with persistent discomfort. It's comforting to know they come here for comfort and encouragement when needed.
I'm delighted to be out of hospital for the third time this year. What an auspicious start to the new year....NOT! But at least we've finally determined the cancer and treatment and the kidney issues have no relationship to the other so can be treated separately. It is a good reminder though that outside of our cancer and related issues can often be other heath factors that need attention and might slip by an oncology team who are focused on cancer related issues. Do make sure issues that are persistent get brought to the attention of our family physicians when not of primary concern to your cancer support. Thanks to the right attention to my kidneys I'm happy to say I"m back in treatment for my cancer and my kidney issues are understandable and manageable now. In fact, even though I had chemo yesterday I'm feeling pretty darn good today.
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I’m excited about a couple of events happening in my neck of the woods! For the first time since the pandemic there’s going to be a face to face breakfast meet and great with a few of our teal sisters in the area. Really looking forward to that!Have also bought tickets for the Lady Ball event in Halifax in May! I’ve heard so much about the commitment and positive energy going into this fundraising event - really looking forward to it and being a part of the event. Fingers crossed that I’ll be physically fit enough to make it!2
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@Taita love your pictures and you look splendid gal. Of course your grandaughter is just as adorable as the pictures from last year's trip. What great memories you've all been making. My only excitement seems to be my acceptance that I need more than just a cane to keep me on my feet. So the Red Rider joined our household along with my return from the hospital last week. Now to to make streamers for the handles, get a little bell to annoy people in front of me, and since I make sure the wheels have spokes insert some playing cards so it sounds like a pathetic motorcycle.
A yearish on Taxol and Avastin? That's about where I was when my Gemcitiabine and Avastin stopped working. I'm now just on a Gemcitabine protocol and we'l see after a couple of cycles whether it's keeping me stable or not. Just had cycle 1 Day 1 on Wednesday so we'll see end of June where we stand. Pure Taxol or even Gem might be an option for you if no new trials are in the hopper right now. You'll weather this like the trouper you are and have been all along. Just continue to stay focused on today....yesterday is gone and who knows what tomorrow might bring.2 -
@Tinazzie
I'm so excited for you. A breakfast and the Ball! Wow, I'd just love it if some events like those were out here. Where I am it's painful just getting the meagre collection of Sisters to participate in the Walk each year but I would have thought Toronto or Ottawa, both of which are quite accessible to us might have things like those happening. Of course any time I bring this up every one looks to me as if I have time or stamina to be the organizer....not likely.
But you have a great time. I'm sure your stamina will allow you to participate in both and hope you'l let us know all the details and maybe even a few pictures. Certainly tell your Teal Sisters here on OVd and across the country send their best wishes for the success of the events.0 -
I am here. I am doing good this whole week. The sun is shining today and I am full of positive energy.
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@Fearless_Moderator
Why stop there. LED bike rim lights might be exciting! No missing you, for sure!
I agree. I wish there was an in-person meet & greet in this area, too. I'm going to have to do some deep dive research into whether or not there might be some group out here. I was thinking of signing up for Peer Support via Wellspring with the hopes of having someone close by and able to coffee or lunch with and who can provide support and guidance as needed.
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After a bad reaction to the last Chemo, I feel good this week. Chemo next Thursday and I will be fatigued for a week. So, I am taking my energy to good use this week. I hope everyone here is doing well.
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@gloho we have an in-person support group here but of the 15 or so members there are only three of us in treatment. One newly diagnosed and the other two (me included) fighting ongoing recurrence. The rest have been NED at least five years and a handful over twenty years. For the newly diagnosed their presence helps to shore up hope. For the rest us we have little or nothing in common and from a support perspective there isn't much interest in making the monthly get together much more than a tea party. LOL, the other gal and i have ended up with our own 1:1 calls and lunches and that's been great. I hope the Peer Support facility through Wellspring can hook you up with someone local or at least someone with some commonality to your situation. Once I clear my backlog of things I have to catch up on I want to investigate these new support resources OCC has lined up for us.0
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@Fearless_Moderator
Thanks for the perspective on this. Something to think about.
I am looking forward to a pre-Easter visit in Toronto with my son's family. Can't wait to see my granddaughter in person! I am hoping to make some yummy Easter sugar cookies tomorrow...we'll see. Baking hasn't always been my forte, but I have been improving over the last few years.0 -
Ladies, it's just past 2pm so time to say good bye for another seek.
@babs272 you stay strong and don't overdo it this week. But so glad you have that burst of energy and who knows, maybe your body is starting to adjust to the chemo and the side effects won't be as long or bad next week.
@gloho take care, and rim lights it is LOL! And if your new medical oncologist has a process to make appointments, tell his "gatekeeper" you have your own....it's called pester them silly until they commit ! Unreasonable waiting is not an option.
@Taita you must be coming up from the glow of a massage...oh how we all envy you. Now perk up gal and start planning that next trip, although knowing you it's already on the drawing board.
@Strongwoman we missed your weekly pearls of wisdom but hope you got answers and good news from your extended medical follow ups today.
Cheers to all. I'm going out on my deck now to catch a bit more D and decide if tonite is Chinese or Pizza.
Until next week gals.......
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IT'S THURSDAY APRIL 5 AND ANOTHER ONLINE CHAT DAY BEGINS AT 1PM.
Before we begin I have sad news to share. One of our community, ToughAsTeal aka Laura Phillips,has left our world to begin her final journey. As one of our PSV's (Peer Support Volunteers) Laura was an active and cherished member of our community as she made countless efforts to encourage and support all of you while facing her own challenges with determination, persistence and with that wonderful sense of humour.
Laura's obituary can be found at https://www.guelphtoday.com/obituaries/phillips-laura-6805366 should you wish to read more about this remarkable woman or leave a message for her family.
Laura, you will be missed but never forgotten. Rest in peace dear friend and Teal Sister.Now to start our chat today. Let;s begin by taking a moment to remember Laura. Then introduce yourself and let us know what's on your mind today.....holidays to celebrate (Ramadan, Good Friday, Easter Monday, Passover), milestones in your life, help you need with a challenge, maybe just enjoying the uptick in weather leading us into spring.
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Good Day All,
Laura will be missed greatly on this site and by her family. She was so excited to finish knitting her daughter a sweater for Xmas and also knit some hats for a granddaughter. So cherished she was by her family. Sending them the strength to get through the next few tough weeks as they continue grieving. It is a reminder to all of us to enjoy the now we have, acknowledge the 'good' times we have and to hope that our "bad" times are brief and not long lasting.
I have had a bad week with a pain crisis that started Tuesday morning. Tha kfully it was a day my nurse was coming. She was able to see me in one of these episodes and cover with the Oncologist immediately. We decided to put in a subcutaneous port so I could administer pain meds. Thankfully it was brief and had it removed this morning. What I can tell you is man that stuff makes me loopy and giggly initially. Then I crash and sleep. Glad it helped.
Today I am writing from a hairdressers chair as I give myself a pick me up foe spring. Looking forward to the final outcome.
Easter will be quite quiet for us no major plans which I like.
How are the rest of you doing and what would you like to share today? What feelings did the news of Laura bring to you when reading it? Anything you want to discuss?1 -
So sorry to hear of Laura’s passing. She fought the good fight that is for sure. Sending hugs to her family and friends. ❤️
As we celebrate Easter we have so much to be thankful for.
A few trials and tribulations to share. First, yesterday my hernia decided to protrude. I looked like one of those creatures from a horror movie. Lol!!CA125 is now at 400 and ascites is still a thing. CT on Monday and we will go from there.Oh and now I have cataracts that need to be operated on. Never a dull moment but I will be able to see!! Yay!0
