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To everyone out there celebrating NED, decreases and stability…HOORAY!! Such great news! ❤️
To those of you encountering issues…hang in there…this too shall pass. Sending positive vibes and hugs. 🤗
@Strongwoman So glad to hear your symptoms resolved themselves. Scary for sure!I am just coming out of a bit of a funk. I had my first trial treatment with Carbo/Taxol and am taking the oral trial drug twice daily for 14 days in each cycle. Treatment went well. I am feeling ok. Just have to remember to nap when I need it. My CA125 actually decreased a bit before my first treatment. Weird, but good. I am borderline anemic so we are keeping an eye on that. I decided to let them try Benadryl IV direct. They give me a dose before each infusion so the first one I am able to sleep off over the 3-hour infusion but the second one is a shorter infusion time so went back to the Lodge feeling drowsy. Am going to ask if we can decrease second dose or use alternate. We’ll see what they say.
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They gave me oral. I think they gave me a double dose as well cause it would make me a bit sleepy. But not like benadryl
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@JoanEG was happy to read your news that your mass has shrunk and wow on the CA125 result. How long have you been on the Olaparib (sorry if I missed that information)? I'm curious from a personal perspective as I'm 6 week in. I've had some interesting but not unreported side effects. Sounds like it's working for you which is great!
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@Alwayslearning I started Olaparib in June, I am currently in cycle 4. So far I have not had any side effects other than my hemoglobin and magnesium being slightly low. My energy level is good and so is my appetite. I was worried about nausea as I had terrible nausea from shortly after my diagnosis last September right up until finishing my chemotherapy in May. What side effects have you had?
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H @JoanEG …what does "cycle 4" mean? I'm not familiar with that term (but perhaps I should be).
I experienced nausea and fatigue for the first 3 weeks. Both were manageable. Definitely not as intense as post chemo infusions. No issues with my appetite. I did get some mouth ulcers so had a special mouth rinse provided which worked. I most recently experienced lower abdominal pain for about 10 days. That has now subsided. My white and red blood counts both took a hit. I had neutropenia during my chemo so I wasn't surprised about the WBC's. Both remain 'abnormal' however not in the danger zone so that's good. At my bloodwork last Friday, my WBC remained stable from the prior time, my RBC were on the increase and my neutrophils squeaked into the normal zone so that was all good. Overall I'm feeling a-okay.
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Good Afternoon Ladies,
How does today find you? Today is a nice sunny day here in Southwestern Ontario. A nice warm day after all that rain and fogginess of the last couple of days. Today I am happy to report that I had my ports removed…..yay! I have been experiencing some really good days with no tummy issues or pain which is amazing in and of itself. My energy level has returned again which is great too.
Today, I slipped out to do a couple of errands then picked up some baked goods from a local bakery for my friend that is in Hospice currently and still has both her appetite and sweet tooth. 💕 I stopped in there after and had a little visit and the music therapist came in the room and we sang some songs and chatted. Afterwards her hubby showed up for the day and we left the room so she could have her "cares" done and him and I had a cup of tea and lovely chat. Mainly letting him vent due to the company that did come and one in particular that is about themselves which proved very challenging for him while she visited. Thankfully they have returned home again and his stress level with that will reduce greatly. We chatted about how nice it was for her to be at Hospice so him and I could chat and have that cup of tea as her "cares" were being performed and what a relaxing environment it all is for this latter part of her journey. She has started with a rattling cough now which is new this past week but will be managed on a day to day basis and conservatively with the palliative doctor. So much different than what one would see in hospital and the environment much more inviting. My friend was receiving company at lunch time so I left shortly after that and came home. On the way home, I picked up a gift certificate for my elderly Aunt to get a mani/pedi that I will join her with and give it to her on Sunday when we all meet up for breakie. My Aunt will be turning 85 and my parents are coming down from Belleville to join us and to celebrate such a monumental occasion that on several occasion she mentioned she would either not be here for or didn't see herself being here for. She is excited to be going for breakie and with my family there will be 7 of us. It will be a nice way to definitely start her actual Birthday day off right! I am excited and hope to get photos too. For I had no idea if this is something I would be here for either. So, many reasons to celebrate the day.
Now as far as my housing stuff goes, we found a place we like so we are starting the process to see if we will get accepted or not and what that all looks like and entails. The added bonus is the main bedroom is on the main floor as is many other things so that when I am unable to manage stairs, I can still access so many things still. Things one has to think about going forward given the stage/state I am in currently. Thankfully nothing is impeding that now and I am grateful every day for that. One day at a time is the approach we are taking to this whole thing so we keep our heads where they should be and hopes not too high.
My parents arrive tomorrow and by the texts I am receiving, my Mom has been cooking and is bringing some meals for us to put in the freezer which I appreciate immensely. It helps me out for the days I don't feel like cooking and the men still get to eat when they get home because I can manage putting it in the oven for them. Added bonus that Mom still likes to cook and wants to do this!
Well my friends, it is 1pmish and time to post this…….
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That is amazing and you couldn't ask for a better CA 125 level (in my opinion). I am so happy for you and your results @JoanEG So keep up with what you are doing and your activities and enjoy/savour every moment you get. Joy is what comes to mind when I read your post and think of what you can do now. Pure joy!!! So go enjoy it to its fullest!
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Good afternoon ladies
it is also sunny here in Montreal today after raining most of the night. Yesterday the hubby and I decided we were ready to add a furry friend to the family… well not furry but feathery… is that a word lol. we got a sweet lovely little yellow love bird and are going to pick him up later today. its the only animal he's not allergic to. we have both had birds in the past so it will be nice to have one together.
there's a lot going on for the first time in over a year, I am back at work 3 days a week, teaching two out of the three and am beyond grateful i am able to. I do have fearful thoughts that come and go, the obvious, how long will I be able to teach? what if my cancer comes back during the middle of the semester? will I have to leave work right away… also, have a CT scan next Tuesday so scanxiety is ramping up. I do feel though that my anxiety might be a tad less, I tell myself this is the new norm and I cant let the possibility of a recurrence dictate my life cause I will never enjoy my life if I do. I tell myself, if it returns, it returns and i will deal with it. Just cause it might return doesn't automatically mean I will have to stop working. if i always wait for clear scans to plan, then plans wont happen. The hardest thing for me to do is live in the moment.
@Hooodith your advice a few months back to keep a journal of symptoms is the best advice. Now I've been able to tell those mindfuc!2g symptoms to f off, you were here before the last scan. Being somewhat of a hypochondriac and cancer DO NOT MIX. I started Lyrica for nerve pain about 5 weeks ago. Not for peripheral neuropathy but for what seems to be nerve damage/pain caused during my surgery. i had an enormous bruise/hematoma on the left side of the abdo and thats where the nerve pain is, seems to be helping a bit.
@Strongwoman glad to hear these days you are feeling better and are able to get out! @itzwhatever if I'm not mistaken you are probably receiving your first dose of chemo right now, fingers crossed for an uneventful day
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Hi all. @Strongwoman you will no doubt have a lovely weekend with your parents celebrating your Aunt. How nice that your mom is bringing some meals. It's even better that it's your mom because you knows what you like! My fingers are crossed that you will be accepted for the housing you found and how great that it has a main floor bedroom. We live in a one-level house and I greatly appreciate it as I've aged and during my recovery.
@melissa it's great that you are back teaching. I'm sorry about the "scanxiety" (I had never heard that word before this forum). Try not to let it overwhelm you. I read something recently that said, "98% of the the things you worry about never come true." I have no idea if that's actually true however it helped me readjust my attitude a bit when my anxiety (for whatever reason) has crept in. I do hope your new family addition brings you some sweet joy.
I'm also in Southwestern Ontario, right near Lake Erie and it is indeed a sunny day. I just took my 13 year old Labradoodle for a walk so sorry I was late. Sadly she is in the throws of "doggy dementia" and we've had to get medications for the evenings as she has "Sundowners Syndrome". Starting at night, she paces, stares at nothing, is frantic at times, claws at things in corners that aren't there. It's like the worst anxiety you can imagine in a creature that can't tell you what's going on. The poor thing. Our goal is on trying to find the best balance of medications to help reduce her anxiety while not turning her into a zombie during the daytime. There's always something right!
Thanks as always for being out there ladies!
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Hello Sisters! It’s a cool day here in the Cowichan Valley. After my air conditioning running the past two days the heat is on today! It’s that time of year around here. I had a lovely visit with my nephew, his wife and two little ones. They live on the mainland and I don’t get to see them often so it was very nice to have them come and spend the day.
@Alwayslearning cycle four simply means I’m on my fourth 30 day refill, lol. I’m glad your side effects have diminished and I wish you well!
@Strongwoman I was definitely pleased with my scan results and my CA125 levels! I’m so happy to hear you are feeling good and it sounds like you have an amazing weekend coming up. It’s so nice your mom will be bringing you some freezer meals and they will be so handy for times when you don’t feel like cooking.
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@Strongwoman I hope that you get accepted to the new place and think that you will definitely appreciate a main floor bedroom. I used our main floor guest bedroom for many months after surgery and chemo, as the stairs were simply too much for me. How wonderful that your parents are able to visit and offer their support. Meals made by mom have extra love in them. The weather here was pretty nice too! ☀️ I live quite close to Belleville, so whatever weather your parents get, we also experience.
@Alwayslearning glad that you were able to get out for a walk. Perfect fall temperatures right now! Sorry that your dog is experiencing sundowners syndrome, I have heard of that. It’s sad to see these changes in our cherished pets. I love dogs so much, and take comfort in their companionship. Their lifespan is far too short.😢
This warm weather has certainly delayed my Autumn decorating! Finally broke down and gave away the giant outdoor Boston ferns a few days ago. Bought four big mums and some pumpkins to put out. Planning to get the Halloween decorations down this weekend if I have the energy. 🎃 👻Lately body pain and fatigue have returned, so there are days I’m finding the barn chores to be very hard. This is most evident in handling one of my horses that has a hoof abscess. Dealing with that means soaking the foot in Epsom salts solution, then bending over holding up the hoof, repacking with gauze/medication, wrapping it in vet wrap, and shoving it into a “boot”. I feel quite angry about how hard this is for me to do! I have zero motivation to ride a horse because of the extra work. The peanut gallery is suggesting that maybe having the horses is becoming “too much for me”. FML😭😭😭 Thankfully hubby is very patient and puts the hay out and dumps the heavy wheelbarrows daily. Poor guy, he’s a retired dairy farmer, and sees no purpose in these costly “hay burners”.😜
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Good Afternoon Ladies!
I thought I would start our chat with this quote. I feel that we all do our very best to live a life of LOVE! If nothing else it is a gentle reminder to all of us that this is what it is all about. Our perspectives or outlooks change slightly or greatly once we are diagnosed and join this elusive club that sends us down our own personal journeys full of emotions and physical changes. It is easy to get lost sometimes. It is important to remember our support circles and be thankful for them daily. Remember at the core of the support circle is YOU! Don't get lost in some of the outer rings as time goes on. Sometimes we can start to worry about the ones supporting us and forget that we are the core and why they are all there. We must remember that it is us that need the support and encouragement from them.
This week there has been talk again about constipation and bowel movements. I will remind everyone there are several threads on this topic that you can find by typing key words into the search bar. It will pull up anything and everything that has been said on the subject. It is a real issue that affects many of us daily. Whatever tricks or tips work for you is wonderful. Remember we are all different so there is no one size fits all remedy for this. Go ahead and browse what is being said and make your own cocktail to make sure your bowels are moving as they should. It truly is a celebration when we actually have a BM and one can feel like a kid again about to get a gold star for what they did. Go ahead and celebrate it!
Some of you are in the midst of treatments and I hope they are going well with minimal side effects. I hope you are getting your rest too. Others are in the midst of awaiting to get CT scans or results and we will be here waiting on the sidelines when you are ready to share your results. Take your time and post when you are ready.
Some of you are planning some very exciting sounding trips and I hope you have a wonderful time away. Making memories and enjoying yourselves, hopefully for a brief period of time forgetting that you have this awful disease and that you are enjoying life like the rest of them out there!
I am off to a knit shop this morning to get some help with a sweater I am making my Dad because I am stuck. So it is either the pattern is wrong or I am doing something wrong. Either way I need the assistance so I can continue on with it and get it completed. In the meantime while I have been waiting to do this, I am making knitted hats for the homeless with wool given to me. I can usually do 2-3 hats in a day which is amazing. They are of different colours etc and I am excited that I am able to do this for the less fortunate especially as the weather starts to cool down. I will pick which charity cause to donate them too once I feel I have enough to share or feel I am done making them. It is something to keep my hands busy for sure while I wait stuck on this sweater. So fortunate to have the time to be able to make something like this for others.
Today I finished up changing bank account info to the new joint one I set up with hubby a few weeks ago. Now any direct debits won't be affected should anything happen to me and continue smoothly for him. Same with any monies coming in on a monthly basis. It feels so empowering to complete this last little bit of financial stuff that is so important to have in place at the end of life. Last thing anyone needs is to have their partner dealing with a frozen bank account because one didn't think ahead and be proactive about things. One less thing that has to enter his mind at any point in time and scramble to do. We all don't like thinking about these end of life chores/tidying up of things but is so important to do when one is well. Like setting up any joint accounts necessary, wills, POA's, bank accounts, etc. So empowering when completed and I can definitely say my mind is more settled now.
What have you been up to lately? Any projects? I was able to finish up 3 prompted journals for hubby and my 2 boys this week which brought me great joy. They are now wrapped and ready to go for them. One less thing hanging over my head that I wanted to get completed. Yay!
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Good afternoon @Strongwoman and everyone. After such a busy summer I’m finding it pretty quiet around here. On Monday I took part in a walk for Orange Shirt Day/Truth and Reconciliation. It was a lovey day and the turnout was amazing. We have a provincial election coming up on October 19th so I have been doing a bit of volunteering for my local candidate of choice. I’m feeling very good right now so I’m trying to get lots of things done outside before the rainy season sets in.
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Hi everyone. I’m just finishing up Cycle 1 of the new trial I’m in. I have been feeling well. Energy and appetite have improved. I am on Carbo/Taxol + trial drug…so my hair is staring to fall out…again. Time to get my head covers out!
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Good Afternoon Ladies.
How are you all doing? Who is out there and wants to chat today?
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Good afternoon @Strongwoman and everyone. Not much happening around here today. It is a lovely fall day and I took my dogs for a walk this morning after doing my weekly household chores. This afternoon I will go out and do some yard work and then yoga this evening. What does everyone have planned for Thanksgiving? I’m thinking of how thankful I am to be feeling well and strong. Last year at this time I had just been diagnosed and was waiting for my first oncologist appointment. I will be celebrating with dinner at my son and daughter in law’s on Sunday. My grandkids and great grands will all be there. These are the people and days I am truly thankful for. What are you thankful for this Thanksgiving?
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I'm thankful to still be here, to be feeling 'okay' and to have my family and friends on my super support team. I'm so thankful for this time, for everything that I'm looking forward to, including a holiday and a new grandchild in the new year!
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@BellaDonna1959 you definitely have much to be thankful for! Happy Thanksgiving! 🫶🦃🍁
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@JoanEG it is a lovely bright and sunny day in my neck of the woods too. I too took my dog for a walk. My parents were in the direct path, in Florida, of Hurricane Milton in the Tampa area. They are still without power and will be likely for many days. They are both fine and so far no damage on their house that they can see. We also have a house 10 min from them and are still waiting to hear from neighbours how it faired. With no power, communications are difficult. So, I'm thankful that my 87 year old parents came through this unscathed physically at this point. Things can be replaced. People, not so much.
We are hosting our local family for Thanksgiving. Looking forward to seeing everyone. I went and got my Covid shot today. Hoping that will help over the coming months.
I wish everyone a happy Thanksgiving in whatever format that takes.
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@JoanEG what a difference a year makes eh? Enjoy your thanks giving dinner with your family. @Alwayslearning I'm glad your parents are safe from Milton. What am I thankful for? I guess that I'm alive, with no pain, am able to work 3 days a week, and have the loving support from family , friends and this group. I find myself in limbo once again waiting for scan results from my October 1st scan. I think I made a mistake when I scheduled my results appointment prior to my scan. Need to wait till the 15th.
Trying to decide do I or don't I email my team. I do this to myself EVERY. SINGLE. TIME. Sigh.
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@Alwayslearning wow it must have been very stressful knowing your parents were in the path of Milton not to mention they must have been terrified! I’m so glad they came through safely and I hope their house and yours escaped without damage.
Enjoy your Thanksgiving! 🍁🦃🫶
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@melissa if it would give you more peace of mind, email your medical team. Have you done that in the past and have they responded? I think there are different schools of thought on this one. Some prefer the info so they are prepared for when they meet with their medical team. Some prefer to get the info when they are with their medical team. No right nor wrong answer to this one. I think it's all about what would give you most inner peace at this time.
Good luck and I do hope the news is positive either way.
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@melissa why prolong the stress? Email your team! Rip the bandaid off! I personally couldn’t handle the stress. My GP always calls me with the results within 48 hours.
You have much to be thankful for. Even in my darkest days I write in my gratitude journal and name 3 things I’m thankful for. Sometimes I have to dig deep and other days I am overwhelmed by how much I have to be thankful for.Happy Thanksgiving! 🍁🦃🫶
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@melissa hoping you received some good news today. I believe it was your scan result day.
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