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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My heartfelt thank you to support from you, from this group, and conquering 2022. We define how we “celebrate” the new year differently than most, don’t we? I hold you in a long strong hug.Until next year
keep moving forward
Laura1 -
@Fearless_Moderator Thankyou for leading us through0
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Well ladies, it's after 2 so time to say goodbye to you for now and in a few days good by to 2022 forever. And to everyone, no matter what 2022 was for you, time to put it behind you. Tomorrow is first day of your life and the next and the next; make the most of each one. And I wish all of you many many more 'first days" .
Happy New Year to all and see you in 2023.......
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@ToughAsTeal @Fearless_Moderator
I have always invited him to my appts. He doesn't understand most of what is being said but that is fine. He attends when he can and that is fine.
I did not want the holiday to surround how I was feeling and so it wasn't.
Interesting still are the people who stay far back from us in what I call the "snowglobe". As this journey continues on, they get fewer and fewer who ask or stick around.
One step at a time is where I am at but also planning to help them succeed markers they need to achieve like driving licensing.0 -
Good Afternoon Ladies!
@Fearless_Moderator asked if I would host today as she is taking her son to the airport as we speak. I am sure she enjoyed having him home for the Holidays.
How many of you are looking for the sun and wondering when you last saw it? I am and I can't remember when I last saw it. I think we are to get a sunny day come Sunday which will be nice to see. Something about the warmth of the sun whether you are outside, in a car or looking out a window in the winter. I see now why cats curl up on couches that have a window near them.
This brings me to my next topic of SAD or Seasonal Affective Disorder. Many people can experience this and I feel that us with cancer may even be more susceptible due to some of the medications that cause our Vitamin D levels to drop. Is anyone experiencing this? What are your methods of helping you through the blue times this can cause? Some symptoms can affect changes in appetite and weight, sleep, moods to name just a few.
Here are some helpful hints if you do have SAD:- Expose yourself to natural sunlight as much as possible
- Ask your provider about taking certain vitamins, such as vitamins D or B12
- Connect with friends and loved ones who can boost your mood
- Get enough sleep, eat nutritious meals, and drink plenty of water
- Try incorporating light exercise into your routine, which can naturally boost your mood
- Seek support when you need it.
Anyone have any updates? I know a few have appts either this week or the following week from posts prior to the Holidays.
Well, floor is open.....who is with us today?0 -
Hi there! Happy New Year! I had my Cycle 1 Day 15 Avastin only infusion yesterday. Looks like my side effects are going to be headache and a bit of fatigue. I have to remember to take my blood pressure and temperature before taking something for the headache...just in case!0
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On Tuesday, I was able to complete a project I have been gearing up to do since before the Holidays.
I finally organized both my sons years of schooling and their report cards, IEP's, class photos, some little mementos etc. Their K-6 is in a special book and the rest of it is in one of those plastic accordian folders organized into the years of school. Then we had been to Medieval Times a long while ago and I put that with it too.
Next....is organizing pictures.
Still working on their recipe books I am doing for them.
Still working on the two books at Chapters I bought for them as well.
Anyone working on anything?1 -
@GloHo
Happy New Year! Sounds like the side effects are minimal thus far. That is good. Definitely good to watch for a fever as well as your blood pressure.
I have had to start monitoring my blood pressure as well but am fairly certain I will be put on a medication for it soon.
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I was able to celebrate New Year's with my family this year...so nice to get together in the winter and a great way to start the new year with such uncertainty in my life. I did have an emotional breakdown a couple of days before they came out. My mind started attacking my senses and I couldn't turn it off for a bit. Ended up going to for drive/walk at a local park/conservation area to clear/settle my mind. It was kind of bittersweet because it was the park where we used to take our dogs quite often and we just had to put them down recently (within two months of each other). On top of everything else, it was devastating.0
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Wee wee wee
two thousand twenty three!
wow great topic for the seasonal missing the sun. Even if there was a light layer of snow on the ground to lighten things up! Me, I turn lights on!!! Overhead, task lighting, decorative lighting. And checking into weather network every now and then looking for even a partial sun!Post radiation, if I did have any benefit, was short lived. Passing blood clots, pain increase, leg edema.. at least ostomy is still cooperating! Nurse has gotten approval to start wrapping my leg. And likely I should get some bloodwork done (concern about potassium levels maybe more?)
but I continue to knit knit knit and enjoying the hockey. Team Canada against Czechia tonight for gold!1 -
Happy New Year everyone.
Catching up on from last weeks discussion. I had mixed responses over the holidays. Taxol Avastin combo seems to be helping since my symptoms have diminished, esp pain but I have been all over the place emotionally as I mentioned a few weeks ago.
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@Strongwoman
I have been thinking about starting similar projects but am finding that I just can't get it going YET. There are other things that I feel are more important and are on my mind and likely won't start "projects" until I have straightened those out. I do all the finances, etc., so I have to make sure that everything is set up for my husband to take over - and he doesn't do computers (good grief). I also want to "clean house" of stuff that is of interest only to me.0 -
It's good to read everyones responses and hear how you are all doing.
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@GloHo
I am sorry to hear about the loss of your dogs. That is tough as they are valuable family members and it hits us hard when they are unwell let alone death.
What you went through is normal. It is if is prolonged and you feel like you can't get yourself out of it that is most concerning.
It's amazing what nature will do to one's mental health even if it did bring back some memories.
It is so tough. I was fine while doing my project on Tuesday but when I went downstairs to tell my boys how it is organized for them, I cried. Part of it was from explaining that I don't have anything for the oldest one before Grade 4. We had a house fire and all that was taken from us. He knows this but to remind him his stuff wasn't excluded on purpose. The boys are so great though. When they are little they are cute etc but when they are older, the hugs they give you are awesome!0 -
@mjmck21
Glad you could join us. How are you doing these days?0 -
@Strongwoman
I am still having diffculty talking about it to my immediate family without the emotions pouring out of me...so, I have to admit, I don't tell them how I am feeling but I keep them posted with my medical updates. The medical updates are, if nothing else, something to hang on to and give us hope for more time together.0 -
One thing that has helped. I started working with a personal organizer to help me work through my belongings, paperwork etc and its helped me focus on creating a calmer space and make decisions about what will happen to them after Im gone. I could not have done this on my own and so for me its a great benefit. Others may not find it so beneficial.
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@GloHo
I have been working on things since I "retired = told to enjoy life" by my team last June. I wrapped work up in July and then started on the very things you are doing. I went over so much stuff and have updated my book of passwords etc just in case something should happen. I am doing a "back up plan" which is writing things down for my gf who will help my hubby if he needs the help so she can walk him through things. I feel better knowing I have this plan in place.
My next email today is to the lawyer to see where she is at with having our wills updated and ready for us. We met with her in the fall and I would like a check mark beside it soon.0 -
@mjmck21
That is an awesome suggestion! Some people also use death doulas as well to help with this sort of thing. It is my understanding they are becoming quite popular in BC.0 -
@GloHo
That is normal as well. I don't tell my family all my inner most thoughts. I have a separate friend for some of that, I journal, I am writing.....a book....something, I cry when I need to and I have my Hospice group I attend weekly. If you have Hospice in your area, see if they have a program you can join. I was hesitant at first but am glad I joined. It is a small group and I did miss it the week we took off for the holidays.1 -
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@ToughAsTeal
Sorry to hear of all you are going through right now.
I have been thinking about doing some knitting. I am a very basic knitter...scarves mainly (hahahaha). But I thought it would give me something to do and leave for the gals in the family (namely my daughter-in-law and granddaughter). There ae so many things I want to do...but my brain won't let me move forward until I get rid of some of the clutter and all the little things that are on my mind (paper trail - get the shredder going!, Wills, password list for different accounts, selling/donating items that I no longer want or need, etc.). I am usually good at dealing with this stuff, but I find that it is a lot more difficult when you "have" to do it!0 -
@GloHo same here for my husband. We started process a number of months ago to start switching some things over into his name now… or at least to his email like e-bills. He is about to turn 60, so we bought him a larger iPad (bigger than iPad mini), as he uses it like computer. We do have a laptop but he is never on it.@Strongwoman very meaningful projects. Have you found yourself pausing alot when reminiscing? our daughter has been key to helping me with similar organizing of school work, pictures etc. she really enjoys doing that. She has gotten me started with the journal but now it’s time for me to start making entries. Oh, and I reached out to Gue-Well Hopsice this am. One of their coordinators will be contacting me. So thank you for the encouragment1
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Thanks @Strongwoman, The Taxol/Avastin seems to be controlling symptoms so grateful for that but I'm still trying to come to terms with how fast the recurrence was. At the moment they are not even tracking CA 125 I think because it was so high in Dec. I read others with numbers in the 10s or hundreds and mine are in the 5 digits. Like you lots of emotions. I have lots of anger as well and am working on having more honest conversations with people around me. For me COVID has been the real barrier. I missed out on so much even this summer and now its impossible to do what I might be doing were I coming to the end of my life prior to the pandemic. But still as many have mentioned a walk in the woods or a sunny day can really improve my mood. So it doesn't take much either way to feel good or lousy.0
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Good Morning and Happy New Year to everyone!0
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@ToughAsTeal
I apologize, I missed your earlier post! Silly me!
You are going through a lot. They will be in touch from Hospice. There will be someone who does the initial call and then they will have Garth contact you to join the group and chat with you before you do. I was just speaking with the lady that initially called me yesterday as she stopped me on my way out to introduce herself and I spoke about the possibility of someone I know joining. So glad you made that step. Like I said, don't worry about crying, I was crying before I even uttered a word in the group and I still went back!
Yes, and I forget names of people. I sometimes call my Mom and ask about names and then they can't remember so it is like this loop of who will remember first.
I also take pauses of nope not doing that today but yes I will work on that. I paint, knit and do wire work as well but am not interested in it as much as getting these meaningful projects done. But am also taking my time doing them so that they are thoughtful. I found some of the prompts in the books hit me like hmmmm how do I want to answer that or what do I really think about that.1 -
@mjmck21
That is a great suggestions. I used to organize my life using lists, etc., but have not been able to pull it together. OK...I have just made a decision after seeing everything that everyone is doing...I AM GOING TO START MAKING A LIST THIS AFTERNOON. It is not going to be in order, just as long as I keep updating it as I think of things and mark them off as I complete them. Thank you ladies...you have given me the push I needed!!0 -
The edema in my left foot/leg is preventing me from getting outside for even the shortest walk. Only footwear I can manage is an athletic slide with Velcro across top of foot, at its absolute loosest! Yikes! I wish if we even had a covered deck or gazebo I would be so happy to be bundled up and sit outside for a while!! So ladies, please get outside for me too!@mjmck21 wow kudos for personal organizer! I think that’s great0
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@mjmck21
Through my raiding of the Hospice library, I have been reading a lot about Death and Grief. One of the things that has been a huge takeaway is that WE are IN the Grief stage. We will meander through the 5 stages not in any particular order but could be experiencing a couple of them at the same time. The process starts now and my other take away is that I am about normalizing death. I call it what it is, I talk about things openly to get them (family and friends) to understand it is okay and to see if they will ask me anything they might be hesitant to ask about.
I also thought that I might make the decision about when I leave but then reading a book it said that sometimes when we decide this, it takes away the chance for very meaningful conversations that may not have occurred without the process of dying. It made me pause and I still don't know what my answer is yet. I am still raiding their library and the one I am reading now is speaking of death and meditation etc. I try to read an array to broaden my own horizons.2 -
@mjmck21
I find that I am very much like you...I want the CA125 and I want CT scans...more often than they seem to deem needed. However, I do reallize that having more frequent tests and test results does not help and can even deter my wellbeing if I think my progress is not as far along as I think it should be. I am learning to be more patient. Waiting is okay. Waiting gives the meds time to work (or not). I am learning to listen to my body and if I think there is something awry, I do not hesitate to push (advocate) for immediate action to determine the cause. Also, I am always deligent at ascertaining the schedule they will be following for the testing process (bloodwork, CA125, CT/MRI, etc.) whenever there is a change in my chemo regimen and/or results.1
