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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
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Wow, just managed to wake up from a lovely nap out on my new deck. The temperature is mild and the sun is shining. Sat out to have a morning coffee and the next thing I knew |I was waking up from dozing off. Gosh I needed that. And thankfully waking just in time for our chat today.
So welcome ladies. So glad to have you with us for Teal Thursday on September 29
I see OCC has released the dates and a bit of information on the fall Symposium. I"ll add that to the upcoming events and do recommend you put a placeholder in your calendars for November 8 and 9th. So great Zoom allows us to hold these each year and enabling everyone to join in no matter where they live.
Finally, a shout out to our members in the Maritimes. Praying none of you were too adversely touched by Hurricane Ian. We saw the devastation unfold through the media and I can't imagine being in the midst of it. Prayers go out to everyone there.It's just coming up to 1PM so let's get started my friends. Who wants to introduce themselves first? Please say hello and tell us what's on your mind today.
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good day i made it finally excited as i’ve been wanting to join; this morning was quite woke up super early and made a much needed coffee haven’t had one in awhile i’d have three every morning if i could.
cannot believe it is the end of sept where did it go i’m kinda glad summer is gone as i absolutely love fall, the crisp air and the smells not to mention pumpkin spice which honestly i hated until this year…. what’s the weather like for everyone are your trees turning mine is still green the neighbour however is yellow and orange so pretty!!
well i finished my second round almost on my third finally able to connect on live between not knowing what day it is and the time change.i still have so many mixed feelings but it is what it is and each day is new and i take it as it comes i suppose you have to when your battling a war, i can sorta of handle all the physical things but the mental and emotional im pretty good at hiding i don’t have a lot of support or atleast it doesn’t feel like it i can count on one hand and it doesn’t really help that one of my supports is incarcerated.
anyways this feels great to talk or we’ll type i have not kept up with a journal like i wanted to, i have the by your side book and have yet to open it sometimes i feel like i’m still in a dream….
my hair eeeeeee i’m holding on to i just dunno i can’t part with it, it’s thinned out and chunks are missing thankfully it’s kinda easy to hide for now i just pull whatever hair i do have to cover up the missing spots lol i’m thinking maybe i should just do an under shave ?! i still have headaches on and off all the time it doesn’t help i notice i clench my jaw so much more; my body is sore and feels broken…. i have been eating ok just until recently no real appetite, food just is not appealing lost 10 pounds which for me is great as i was trying to before all this anyways but i really don’t want to loose anymore…… if i can ask how much did everyone loose? or gain?
i’m tired a lot and find my self sleeping which i dunno makes me feel like poop i’m not use to staying home i had such a busy lifestyle before …. my hands hurt all the time now like the bones in my fingers oh and i notice my nails on my hands have these white spots and my toe nails they are like this weird fry color i do have an appt on monday with a neurologist. i’m going to be writing down my questions so i can remember anything that you can suggest i always feel i go blank. I do know forsure i want to ask about acupuncture and maybe a stress ball for exercise?
how is everyone else?
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here’s a quick photo of my tree view
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Hello, I am happy to join the chat today. Welcome @ele sorry to hear about your side effects. I found the journey hard emotionally as well. I can say that it took me a couple of years to get over the shock of my diagnosis. HGS 3rd stage for me in 2020. First recurrence in March this year. Found social worker and psych oncologist very helpful with emotions. Fortunate they are available in the hospital I go to.2
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hi everyone
@Fearless_Moderator have been rediscovering some films on Netflix that were worth a second/third/fourth watch
@Ele most recently I have been losing a lot of weight due to appetite I guess. Getting good nutrients in can be a challenge. And nothing wrong with celebrating a bit of weight loss so the jeans we pull out in the cool fall weather say “damn you’re Lookin’ good”. Especially when we may not be feeling the best
i had chemo yesterday and very stupid tired. Still slowly adjusting to ostomy. I stumbled across a Canadian company in North Vancouver that makes 100% biodegrable, flushable pouch liners that I hope might work for me. Have requested samples.2 -
@Ele Sounds like you are experiencing a lot both physically and mentally. Good to write down what you want to ask so that you don't forget. Plus you can write in your answers so that you can look back at it in case you don't remember.
Hair is one of those things that is SO individual. I wrote a piece that you can search for called "They say it is "just" hair" that explains a lot. Worth a read if you haven't read it yet.
Glad that my Teal Sisters are out enjoying some of that sunshine in whatever form that comes. For me, it means starting to wash and dry my fall/winter clothes as I get ready to change over my wardrobe.
The fall colours are just sarting to come here and it will be beautiful once it all comes. Not looking forward to the raking of them but perhaps I will get out of that this year.
As for me, not sure what I am looking at yet. Depends on what the doctor says tomorrow. I have feeling definitely bloodwork and possibly a CT Scan which I dislike immensely these days. May have to determine as to whether my symptoms are coming from the kidney/ureter or my descending colon. If it is the first one, I may have to reluctantly agree to a nephrostomy. Surgery is of the table for me unless it is life threatening.
So, we went axe throwing and played pool for my youngest one's birthday this past Saturday and that was fun. Had to stop axe throwing part way through due to my 'unrelenting body' but oh well. I got to try it and everyone enjoyed themselves. Can say, it took me 2 days to recover energy wise though.
I, personally, find that one of the most difficult things with this disease......low energy. I was so very active and had a busy schedule that I look now and wonder how I even did those things. Especially when I force myself to get up and get moving in the morning when I would really like to crawl back into bed. Only thing that stops me is reminding myself that there will be a time when I won't get the option so move while I can.2 -
@Ele welcome. So glad to have you with us and that you found this site, expecially given your comment about not having as much support as you feel you might need. Always remember we are here for you. We're a community of over 900 members across the country, all of whom have experienced this disease in some way or other. No one here walks alone through their journey.
Glad you got the By Your Side book but do read it when you feel emotionally ready to accept your diagnosis. We've all experienced that feeling that this is all a dream we will wake from but eventually the reality sinks in and the best you can do for yourself is to arm yourself with information. That will help understand where you are, what lies ahead and arm you with the questions you need to prepare to make your clinic consultations more meaningful and productive. That book will help and we're here too.
You mention becoming good at hiding your feelings. Again, we've all been there, mostly to protect family and friends. But it's important for you to let them out somewhere. Keeping it all inside is counter productive to your healing. So if you feel like screaming or cursing or even laughing hysterically or any other means of release even if just writing it down, use this site. We all get it. I've done some screaming here myself. These are natural and normal feelings and part of the journey.
How you're feeling physically is also just part of the process during and after treatment. Many of your symptoms are common and some just natural for you. We each experience the disease and treatment differently. Lots of advice here to be had from members on how to deal with side effects though. So reach out when you need help or suggestions.
And finally do use the OCC website. In it you'll find much support in the way of videos on popular topics, updates on new treatments and trials, and many stories from women, many of whom have beaten this OVC to the ground.0 -
@ Ele What a beautiful tree!
@ToughAsTeal As you said, nothing wrong with "damn you look great today"!
I bet the ostomy would get some getting used to. Have you had any mishaps and if so, they getting fewer or just a matter of finding the right fit for you and your needs? The product you found sounds good. I would think flushable would be great! 0 -
@Bojenka nice to “chat with you” i do have a psychologist but am thinking of switching to someone within cancercare i just feel that they would understand more then my “regular” one if that makes sense.
the shock is real at this point it comes and goes and i truly not sure if i’ll ever fully understand it it makes me hopeful hearing even though it took time it sounds like you got through.
@ToughAsTeal @Fearless_Moderator. i love netflix i can never find anything that keeps me interested long enough before i feel tired i’ll keep looking what are you all binging?
Yesss being on the jeans that fit after all the summer bbq food 0 -
@ToughAsTeal I was hoping you'd be well enough to join in today. And you sound so much better. I do hope that disposable bag liner works for you. I can remember when my dad had to have an ostomy and how much dealing with the bag challenged him. He was lucky though he only had it a year and then had the surgery to resect his colon. Will that be an option for you?0
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@Strongwoman I might be looking at nephrology in future. So I would have a bag for pee and a bag for poop. Brings new meaning to “letting it all hang out”1
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@ToughAsTeal It most certainly does. The nephrostomy is what I may be facing and sooner rather than later. It will all be a learning curve....that is for sure!0
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As for binging.....I am watching "The Good Fight" on Amazon Prime and on Netflix the newest season of "Cobra Kai"2
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@ToughAsTeal
Your usual humorous view of what's going on with you is always so refreshing. Somehow being able to laugh at ourselves and our predicament is so emotionally healing. I've begun pulling up old Netflix and Prime movies and series and rewatching too. Interesting seeing something a second time often results in an entirely different perspective. Especially much of the British shows. There's a who dunnit that was fascinating to watch unfold that I've been trying to find for you. Damn this brain fog or I'd just pull the title out of my brain with ease. But I am determined.0 -
@Ele if you haven't check with your cancer centre for a social worker to connect with. My centre has a whole social work department with each of their counsellors well experienced in patients with cancer. I've been working with the same gal for several years now and I find her enormously helpful keeping me balanced and with a good perspective.2
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@fearless ostomy reversal is not an option.I have lost track who asked what bingeing… I binged “Servant of the people” a few months ago. It is a comedy especially if you have Ukrainian background. It’s only available with English subtitles. Well, it was a comedy when it was made. Unfortunately a lot of parallels to current events.1
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Trying to get the family organized or stocked up so I can leave for a couple of days and go visit my parents and not have all that "other" responsibility. I think it is good for them to do this to remember that I may not always be well and they need to "pull up their socks" a little. Plus a change of scenery is going to be so nice.
I have asked that if I do need a nephrostomy if we can at all hold off until my oldest's ones bday on the 11th so it is "normal" due to the last pandemic years and we have some fun before I am down for a bit. I think they will agree and it will be mentally better for myself if we can as well. So much physical and mental aspects to this disease.
My gf's want to go for dinner later next month but the time of day they are saying is just too late for me. So, I will let them plan and then decline on going. I can't do a sit down eating time of after 7:30pm anymore. For me that is a huge change compared to when I was working and quite often was eating my dinner after 9pm. So many changes.1 -
@Bojenka great to have you back again today. How are you feeling? You must be "up" with those latest CT results. When I get mine back those words...shrink, stable....just lift my spirits enormously, even though I know it won't last forever.1
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@fearless recently discovered Miranda Hart…British comedian… many clips on YouTube.. laugh out loud0
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@Strongwoman @Fearless_Moderator @ToughAsTeal thank you i appreciate all the words and support it honestly makes my heart happy.
emotions are hard as i’m sure you all know and understand…. one day can be a rainbow and sunshine the other it’s down right ugly i hide mine for myself in my head i feel if i allow myself to feel all these feelings and not be a “soldier” i will crumble and if i crumble i’m not sure i’ll recover
my friend who is incarcerated has offered to be a sounding board im just not sure i want to let everything all out as it won’t be pretty i’m sure he knows plus i feel like i’m a burden even tho he told me i’m not …… has anyone felt like a burden0 -
@Ele absolutely have felt like a burden. And at times I would open up and just not hear the words I needed (cheer up This will be cured… just get up and go do something… ). Which is why I value here so much.2
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@Strongwoman I find my eating habits have changed as well. I eat well when I get up and usually quite ravenous around lunch time. But I used to love prepping for dinners and creating some kind of feast for dinner but now no interest in cooking or eating after 5. I force myself to eat something just for nutrition purposes but I've become one of those who's adept pushing my food around my plate usually. That said, I"m down almost 30 lbs after having maintained my weight as steady since original treatment. Very happy that my weight is slowly dropping without having to diet and knowing I'm still getting proper daily nutrition.1
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@Strongwoman same for me ie late dining not an option anymore. I am definitely a lunch lady now days. Works for my retired ladies walking group. I so look forward to our get togethers..find social connections really important now days. Find it takes my mind off the cancer thoughts.0
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Am saying goodbye for now. Have a great week everyone. Keep moving forward1
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@ToughAsTeal have you seen Jack Whitehall's Travels with my Father? Dad is a hoot. It's a Netflix series.
@Ele I've also felt a burden at times and as my disease progresses and I have to rely on my husband more and more to help with things I can't do anymore I feel a sense of guilt that's I've spoiled our retirement. He can tell when I hit one of those moods and will shore me up by reminding me as far as he's concerned we're accomplishing what he'd intended and that's spending time with me. And then reminding me how much of a caregiver I have been over the years and this is my time to be cared for. Works pretty well for me.1 -
@ Ele I too have had those feelings of being a burden or will be burden to those around me. I guess it is why I am so adamant to get through my day and be physical while I am able to. I have always been the caregiver both at work and for supports for family and friends so this part for me is extremely difficult.
I feel that, I, personally, have gone through a "weeding out" of friends as well. Some say they want to help or some just disappear. I am done with anyone or anything "toxic" in my life as I have too much to deal with.
I find it difficult enough advocating for myself and sometimes get "tired" of doing the following up with some of my docs.
Want to spend time doing fun things now1 -
@Strongwoman I too have done the "friend weeding" over the last six years. My list today is almost entirely different than it was then. People I naively expected would be there for me just weren't up to the effort of dealing with a sick friend. But then people I didn't expect anything from have become extremely important to me. They say you don't really know who your friends are until you are in need. For sure! But the weeding process has made those interactions so helpful and productive and fun when before they were almost toxic.3
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@Bojenka I've been in palliative treatment for almost three years now. Really after they treated my first recurrence and established my diagnosis as incurable. So my journey became less about recovery and more about learning to live with this disease. I often compare it to being diabetic. You'll have the disease the rest of your life but can live a fruitful life relying on insulin to keep your disease in control. It works for me.3
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Ladies, I see it's now after 2pm ET and time for us ro day goodbye for another week. Next week Strongwoman will be hosting this chat on my behalf while we drive my son, who is visiting right now, up to Ottawa to fly back to Alberta (boo hoo). I'll be back in the saddle the week after.
Have a great couple of weeks ladies. Despite our conditions, there is much to enjoy right now. The leaves turning those glorious colours, those cool fall breezes, mmmmm a turkey dinner with all the fixings. I do love fall. I do appreciate that I'm still here to enjoy another one. So glad to have all of you with us each week.
Signing off now
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