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 forgot to mention that I have yet to do the things I mentioned, such as writing letters, speaking to certain people, etc. like you mentioned @Strongwoman I just want to take this opportunity to plan and do a few small. But significantly meaningful things. I can write the letters and if/when I survive I can choose to give them or not. You were right when you said many people wait until it is too late, they haven't the strength or whatever reason. I think for me, that is the biggest fear, that I will find myself unable to.
In a perfect world we should strive to live this way all the time. Many, or even most people avoid the subject of death and do not want to live a life as if today was their last. I hear it's very hard to do : )
@Strongwoman you are right, listening to people's stories can provide a pick me up. I'm still figuring things out and have not found my way on my path 100% yet. I realized the other day that it has already been 6 months since my diagnosis, time, as they say really does fly. I couldn't believe it. I feel now I am as ready as I ll ever be to start doing things that I have always wanted to do, but now have a good reason to do so. @JoanEG try not to think of it as though facing these things equates to you surrendering. That thought did run through my mind at first, now I just view it as being practical, or becoming task oriented lol.
Much easier said than done and that is why I admire you @Strongwoman. the way you are able to discuss your visits to the palliative day centre and engaging in legacy work. When I hear the word legacy I can't help but feel sad as I associate legacy with children and sadly for me biological children won't be in the stars. My head knows there is more to life than bearing children but my heart is still adjusting to that, knowing that a piece of me will never live on. That being said, I have always been open to adoption : )
To go off topic but to save space @JoanEG about your concern of possible ascites... I am not a dr but... If you did not have it when u were first diagnosed, and the fact that your recent scan was positive tumor shrinkage etc then I think it's unlikely you have ascites. I would gamble to say that you would know. When I had it, it made me very uncomfy, could not eat, looked 6 months pregnant, and my belly button became an outie. During chemo I did have a lot of bloating and gastrointestinal symptoms so hopefully it's just that. When you go for your appointment you can always ask if their was ascites on the scan.1 -
@melissa
Sorry to hear you had to witness an accident. We witnessed one a few years ago and it does have an effect on you.Thank you for sharing that perspective. After the initial shock and fright of my diagnosis, I was able to come to that understanding as well. It does not make things easier but, as you say, it definitely brings clarity.0 -
@melissa I will say this....no one has to have it all figured out at any point in their journey. I don't know how one could. There is so much to each of our journeys, and it unfolds as it should for all of us as individuals.
Before I joined my Palliative group, I felt alone and was a mess daily. We also think Dex made me go too low as a side effect and attributed to some of those emotions. I cried the entire time I went to my first group meeting. There and here, I can be myself, meaning....discuss stuff I don't feel either I can or am ready to discuss with family and friends. My own immediate family is not ready for some discussions and why having outlets is important. They have their journey, and I have mine.
Legacy work can be associated with children for sure. I shared and will share again that I feel blessed to have met and become friends with someone in my palliative day group who has since died. She shared with me her thoughts and what she was doing for her legacy projects, and I was able to complete them all for her. Some she had completely finished and others not, and some needed a bit more work. My first friend in my group died after I dedicated the Walk for Hospice after her hot pink energy, and I consider that Legacy work. I feel that Legacy in its name alone is a kind way to say and a better way to say "end of life projects."
When I work on my projects, I often don't think about the end of life. When I go to write the letters, etc, associated with it, well then I do expect and have shed tears. It is healthy and normal as we are grieving the loss of self. So, we go through a grieving process. As one knows, everyone grieves differently, and one's legacy projects will reflect that as an individual.
I shared in my presentation that I delved into reading books on death and dying. For me, it was comforting, and I learned everything I was feeling was normal, and many have felt the same way. Some will not be able to do this. It basically comforted me. I am quite open about the topic of death and dying and comfortable with it and respect that others are not. It is all okay wherever one sits with it.
Take your time and let your own process unfold as it will. Take whatever project or task is comfortable for you and move on. I crafted before my diagnosis, so knitting is just knitting to me. I am going to post some journal prompts next week in case it may assist someone to begin journaling without worrying about where to begin. In researching some or coming across some prompts, it has given me some food for thought for my own journaling.
It's why I say "be kind to yourselves". I mean it. Your day or today will look different than mine and so on. There is no right and no wrong but a "what is."
I feel we begin with the "why's" upon initial diagnosis and move on to "what next" as time goes on. We find our process that works and keep moving forward.
My heart goes out to you hearing you are not able to have biological children and your feelings surrounding it all. I do feel that you and your partner are open to adoption is a big step and comes with a lot of thought and communication. Hard talks and acceptance of a difficult situation.
@JoanEG and @GloHo I feel we don't surrender, we accept and come to terms with a very difficult situation with many feelings and emotions. Time does help us come to this acceptance.
Thank you ladies for being brave and vulnerable sharing all of this and how you feel with this very sensitive subject. Hoping this helps others as well and for everyone to know "YOU ARE NOT ALONE!".
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@Strongwoman as always you seem to know exactly what to say. Thank you. ❤️0
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@Strongwoman
Thank you!!0 -
Check out the cool paper I found to write notes/letters on for friends/family!
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Very nice, almost looks antique0
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Hello Everyone! For us in Ontario, we have faced one winter storm with another approaching for many regions tomorrow evening. Followed by what some are coining "polar vortex" starting the beginning of the week. This is probably not helping anyone who is struggling with emotions and/or sadness/depression.
As we are approaching BLUE MONDAY, I thought this would be a good time to chat about it. Blue Monday is the 3rd Monday of the beginning of each year, so for us will be Jan 15th, 2024.
FACTS
-more than 1 in 3 people will be affected by it
-women are usually more affected than men
SYMPTOMS
-slow
-bearlike
-tired and flat feeling
-unusually sad
HOW TO HELP
-get outside (if at all possible even if it for a very short walk, make sure you bundle up!)
-sit in sunshine
-sit in a bright window on duller days
-open the curtains up
-put lights on in the house
-do something that brings you joy
-play your favourite song or video and dance like no one cares
-spend time with loved ones either in person or connect with them on phone or video
-spend some time away from the screen----power down for 1 hr/day for a wk and see if you can increase it a little weekly
-talk to someone if you need too---OV Dialogue, Wellspring.ca, family doctor, psychiatrist, therapist
Most of all, know it is normal and you are not alone. There are many avenues to help you through this.
Hope this helps. Please reach out should you need more specific resources.
How is everyone today? Conversation in the last week became quite heavy and deep. I am thankful it occurred as this site is here to meet people where they are at. We will not all be on the same level and have the same feelings at the same time. Some will be at polar opposites for their entire journeys. It is all good and normal. There is no way we will all be on the same path all the time. What is on your mind today and what would you like to discuss, share or vent about? The time is yours, guide me as to where everyone is at, currently.
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@Strongwoman
Happy Thursday. Just popping in to say I am feeling pretty good. 🤞. My husband had successful hip surgery last week and we are all managing through that process. Keeping my participation to a minimum to save strength and relying on others who are at the ready. We all need to remember to do that, hard though it is. So I feel like I may be extending my timelines and I will enjoy each day that it brings. My doctor is coming to see me shortly. Because I have been doing so well she hasn’t seen me in a while because we both agreed I would reach out if I needed her. I think now she wants to see for herself. Lol! Enjoy the weekend everyone and stay warm and dry wherever you are. ❤️1 -
Hi ladies,
lots of snow and temperature fluctuations here in Montreal this week. Not my favorite time of year but am trying to make the most out of winter. @Strongwoman what did you call it? blue Monday?1 -
@Taita Thank you for popping in and for the update. I understand it all. Save strength. We will continue to think of you. Thankful your hubby is doing well too.
Take care 1 -
Yes @melissa it is called Blue Monday. Lots struggle this time of year. This weather and weather systems don't help either. Hopefully some of those tips and tricks will help. How are you doing otherwise?1
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@Strongwoman i joined the gym last week, I went yesterday and felt much better after my 40 mins on the bike. Bonus I went with a friend and the company was much appreciated. It helps getting out of the house even if its only for an hour or so. Still have not found my groove in terms of the wait and see period. I tend to be a bit of a worry wart especially when it comes to health even prior to cancer. For me, it is safe to say my mind has the potential to create symptoms so thats where I am now.
I am a bit worried about a very minor burning like pain i have in my pelvis that comes and goes and seems to dissipate greatly when i can manage to stop thinking about it. I think to myself, is this nerve pain post surgery, scar tissue etc etc. feel it more when sitting and much less so when standing. no other symptoms whatsoever. On Blue Monday it will be 2 months since chemo ended. I am going to email my doctor and run it by her and see what she says.
How are you doing? you have your appointment with the trial people soon right?1 -
Sounds like you have found some positive/good outlets for yourself. That is great. Having a friend accompany you would definitely make the time go quicker. I loved listening to music if I was alone.
As for your symptoms, we can let our minds wander and on the other hand we are used to being hyper-aware of our bodies for so long it is difficult to shut off. Best to ask the question and if nothing else, put your mind at ease.
I am doing better than earlier in the week. Fatigued and weaker than normal bit I will take it. I am home and happy about it.
Yes, I go on Monday for a consult. I will post anything I find out or find useful.
Thanks for asking.1 -
@Strongwoman i am glad you are home now and are doing better. I hope it stays that way for a long time. let us know how the new diet goes if you're up to it. Best of luck at your appointment on Monday, fingers crossed it is a good fit for you. @JoanEG if I remember correctly you have your appointment with the surgeon tomorrow, hope all goes well and they can operate ASAP1
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@melissa yes my consult with the surgeon is tomorrow! I had my4th round of chemo on Monday and so far I’m feeling good.
@Strongwoman it is a bright, sunny but chilly day here. They are calling for our island in the Pacific to receive arctic outflow winds and snow for the next several days…. UGH I hate the cold and snow. I will be hunkering down and denning like a bear. I am going to bundle up and take my dogs for a walk before the clouds and wind come.0 -
Hi all. Had my Onc appt on Monday. At 7 infusions (= 7 weeks) my CA125 is up a bit (40). So, not too bad (I’m in the mid-5000s). I didn’t have my results before I left my appointment and we agreed that if my CA125 was down or up a little that I would stay the course. My next appt is in Feb, so unless anything crops up in the meantime, I’ll continue weekly Taxol and get another CA125 in Feb. I was supposed to have a CT at the end of Jan but they couldn’t get me in till the end of Feb, so I won’t have an image of what’s going on until then. I’m hoping Taxol will continue to kinda work to at least slow progression at this point. If I have a big increase in CA125, my next treatment will be Gemcitabine.@Strongwoman BOUQUET 🤞
@melissa For sure ask about the burning. So glad you’re going to the gym. I still try to get on my treadmill 5x week. Successful some weeks but new puppy has thrown my schedule off. However, I am getting in more walks and outings with her, so I suppose it’s balancing itself out 🤣 🐾🐾.@Taita Thanks for popping in and for the update. Glad to hear you are feeling pretty good and that your hubby’s surgery was successful. Extended timelines would be a wonderful positive for sure!! It’s nice that your Dr is coming to see you too. Save your strength…you have a great support system!!Have a great weekend everyone.2 -
Thank you @melissa and I will. Think I want to find a different term than 'diet'. You me it implies wanting to lose weight but how about 'my eating plan'? I am up for positive suggestions.
@JoanEG Thank you. I, too, hope your consult goes well. Bring pen and paper in case you want to jot something down or not forget (although they are usually great with handouts). It may be overwhelming but know we are here for you and will help to answer/clarify anything for you the best we can. Usually we come up with some questions after the fact and think " oh shoot I wanted to ask such and such".
@GloHo Nice to hear the puppy is fitting in and doing well. It sounds it was "the right fit at the right time". I am keeping my fingers crossed you can "stay the course". If you do have to, how do you feel about taking the gemcitabine? Also good to hear your CA 125 is up a bit and not by a big jump. Yes, it is difficult sometimes getting a CT scan when they want you to. I am hoping since mine was done in Emerg the other day that I am good again for another 3 mos or so. 🤞 Not my favorite thing to be done but still favored over a NG tube. 😉
Everyone else, if in Ontario, hunker down and stay warm and safe. The warm and safe goes for everyone wherever you may live.
Take care all. 1 -
@Strongwoman how about lifestyle change? That makes sense. @GloHo enjoy your puppy, I wish the hubby wasn't allergic. It might be time for me to look into hypoallergenic dogs, if that is Infact a real thing.0
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For all.....
https://pin.it/340U3RCo12 -
@Strongwoman thank you that is so on point! 🥰0
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BAAAHHHH I am frustrated! I started writing my story and haven't done it for awhile....do you think I can find the file where it is???? NOPE!!! It's terrible. I have so much written currently. Walk away and come back another day perhaps? I have tried typing everything in the search bar in files, anything I can think of and CAN NOT FIND IT!!0
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@Strongwoman oh no!! If you remember when you last added to your story try searching by “last edited” date.0
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@Strongwoman
Feelin’ your frustration!! Leave it for today… maybe something will pop into your mind when you least expect it.Tip…open the program you used (sometimes a list of latest files appears) and go to where you would open new document (sometimes a list of latest files appears). If you really want to get st it today, send me a PM with details of program your using, etc. I may be able to work through it with you.0 -
@Strongwoman walk away from the computer and try again much later lol0
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I am home now from my appt at PMH. It went better than I thought it would both in options and with speaking with the Med Onc as well.
Off the top, I am NOT eligible for the trial as I don't meet the criterium on many levels. So, good to know that and they explained why.
Were very concerned about my bowel obstructions and I do mean 'concerned'. Has made a lot of suggestions and is passing them on to my team here. First is to have Juravinski have the surgeon that did my original operation re-look at where I am at now and see if proactive surgery to mitigate the bowel obstructions is in order and can be done more safely. This is rather be waiting to make decisions like this in an acute or emergency situation saturated with risks. I am all for it and will hear what anyone has to say about it.
Is all for the "low residue diet" I am on and re-iterated that it is important to get the bowels calmed down if at all possible. That this type of issue is one of the worst symptoms to have with this disease period. We talked about the Letrozole and that possibly it isn't working anymore and that perhaps I would go on a new drug Tamoxifen instead. I am not sure if that would be when bowels calm down or more sooner than later. The other option that would be waiting for bowels to calm down would be weekly infusions of Carboplatin. I would assume if it was weekly, that the dose would be different than when I received it every 3 wks. So, I left feeling more hopeful than I have regarding this disease in a long time.
I see my Oncologist on Wed afternoon and will discuss all of this further with her then. For the time being, I am thankful they took the time with me and seemed genuinely concerned. Wanting to find some solution for me rather than giving me nothing. A worthwhile trip for sure!
They are also going to speak with my Gyn Onc in London re: testing on my tumour and what tumour marker testing was done. This would be to see if anything can be more pinpointed and guide them to a more specific treatment regime. I respect both of them and am sure they will come up with something.
So that is where I sit currently.
Good news too, my neighbour has a juicer they are not using so I will not have to purchase one. YAY!!!3 -
@Strongwoman
Wow! Except for ineligibility for trial, sounds like some good options for you! You must feel some relief. So glad to hear your good news. The juicer’s a plus too!!0
