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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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@HorseGirl What lovely memories you are helping to create for your grandchildren. It will be things they remember forever. Plus look at all the great memories it brought back for you and your friend and all the fun you had. That is worth its weight in gold! Being able to sit back, relax and take it all in is a gift in and of itself. You definitely have something special there and a nice spot to experience it all in too. Keep it up! 💖
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@Strongwoman thank you! I’m not much of a cook, and have zero talent knitting or crocheting 🧶, so this is the best I can do! Our legacy work matters to our loved ones, and each of brings something different t on the table for sure. May start journaling for them too. Maybe when I slow down! For now, I want to go as much as I can.
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@HorseGirl I think it is awesome you can create these memories for your grandson. In such a special place that obviously means so much to you too. So nice you can share that with him and his friends. They will remember that forever. I say, as long as you feel ok and well enough, go for it! Do whatever you feel you can while you can. One never knows what tomorrow brings or how one will feel. The other part of this if you wanted to "add" to your current Legacy work is to journal about what it means or how it feels being able to do this for your grandson. Something he can look back on and go "oh ya, I remember that…." type of thing. Doesn't have to be anything grand or elaborate. You can mention how it makes or made you feel being able to do it and then what fun you had in the process. Just a thought……..
In the meantime, enjoy all you can. Friends, family, whomever and places you will go and see. I did as you have and was busy, busy, busy for a long while and recently have slowed down. I am more into having them come to me now and reduce my outside visits during the week as I am more content at home. So things do change over time. Savour what you have currently. I have been reflecting back more recently and do not regret a single thing I have done in that time. It was fun and I enjoyed every minute of it. Time for me has changed and that is ok too. On to a different phase for me. I still get out. Tomorrow I am getting a manicure and going for lunch with a friend. I am looking forward to that. Friday, my parents are coming for a visit. It has been months since I have seen them. It will be great to catch up. I have come up with some things that they can help me with while they are here too. 🤗
So keep up with those Legacy outings with your grandson and the rest of your family and friends. I doubt you are out of ideas or places to go yet. ☺️
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Good Morning Ladies! I am posting early for our Teal Thursday as I have plans with a girlfriend today. I am off to get a manicure and then go have some lunch with them. A time to connect and catch up on what looks like a beautiful sunny day here today.
I want to remind all who have signed up for the Walk of Hope that we are days away now. Wherever you are walking, whether it is your first time or you are a veteran at it, I hope the weather cooperates and everyone enjoys themselves. A time to meet other Teal Sisters in your area and if you were able to, raise some money for such a worthwhile cause. I am not sure what happened with my sign up but when I went to retrieve my password, nothing came through and now it is too late to send emails out to family and friends. I am looking forward to meeting others in my area and having a fun day. So, dawn your teal, put that smile on your face and have some fun on Sunday!!!! Perhaps later, you can drop a little line saying how your walk went with your team and what it meant to you while you are still on the "high" of it all. 🤗
I picked up a new project that will take me awhile in knitting that I am looking forward to doing. I am knitting my Dad a cabled sweater. Something I have always wanted to do and then found ways to not do it. It will have its challenges but I am looking forward to taking my time and completing this for him. I completed the sweater a widowed friend gave to me to finish and keep and will be giving it to my Mom. I have it all washed up and all I have to do is wrap it up and get it ready for her later.
As far as medical stuff goes, I take it day by day and what my insides decide they want to tell me or do that day. Today they are talking a lot after having a couple of yogurts so I think I better take an Odansetron to get me through the morning/lunch and see if the waves of nausea will ease.
We are getting closer to our hearing date for the Landlord Tenant Board for the place we rent and was sold. We are hoping to appeal on Compassionate Grounds to stay a little longer and so that I have more time with family. In saying that, I had to get an updated prognosis from my Palliative Doctor as she was asked to do up a medical letter for my file. She came back saying "less than 6 months". I know these are best estimate guesses and I have already surpassed what I was originally told but it still has shook me to my soul. I know the changes are taking place and that in my case, I will run into acute trouble and be moved to Hospice quickly after that. Hubby knows but doesn't want to talk about it. The kids are in a delicate spot with work that I don't want to bring the elephant into the room just yet regarding this latest prognosis. Today I am telling my girlfriend and on Friday when my parents are here, I will be telling them. These leaves it open for them to see/not see me as they see fit going forward and that I have been up front and honest with them. If there are things they want to do, discuss or help with then now is the time to do all that before I am unable to. I have had ups and downs with this as I face my own mortality and what it means. My sincere hope is that I get to celebrate both sons birthdays (Sept/Oct) and in our current home but treat it like it is our last because we will have to move. I feel the same about Christmas and being able to spend one more here as a family and reflecting back at all the ones we had in this home before. A time to laugh, cry, embrace and fill ourselves with joy of being able to be together. A time to make memories too. Some of this is bittersweet as I think forward but knowing it all hinges on that date in October as to whether we can stay til spring here. One will see. So some heavy stuff hanging over my head but looking at alternate places to live can be exciting and seeing if it the right fit and timing for us to do so. That is where my head has mostly been at lately. Heavy stuff for sure but we are surrounded with loving people who want to help us and so we are letting them. Supports come in all different forms and can be utilized in many different ways. It is the love you can feel from them as they assist you that really matters. 💕
I am hoping that today @Monica and @Alwayslearning our new Community Champions are around and can assist with today's Teal Thursday in my absence. If not as I know it is short notice, I will catch up when I get back home. So, don't be shy ladies. Tell us where you are at. Physically with treatment or without. Mentally/emotionally how are things and where are you at? Anyone recently diagnosed? Anyone facing a recurrence? Waiting for trial approval or treatment approval? Or…..just…..how are YOU? Let us know. We are all here for you.
I will now go and get ready for my day of fun. I picked out a nice bright yellow shirt and jean skirt to wear today. Something bright to match how I am feeling.
Catch up soon my fellow Teal Sisters!!! Go enjoy LIFE today!!!💖
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@Strongwoman …Thank you for sharing such intimate thoughts and challenges you are facing. I can't imagine receiving that letter however you've once again demonstrated that you truly live your "handle" as a Strong Woman. You are facing it with such strength and courage, especially with everything else going on around you. I love that you picked out a bright yellow shirt to wear today.
I unfortunately cannot be engaged for 1pm today as I'll be in transit on my way to PMH (Princess Margaret) for my 2-week Lynparza check in. I will however be at the Walk of Hope (Burlington site) on Sunday. I'm a first time walker and have over 20 family/friends joining me. I feel very blessed with the support. Perhaps I'll meet some of my Teal Sisters!? My team is "Mel's Cure Crusaders".
@Strongwoman I hope you have a wonderful manicure and lunch with friends. You deserve to treat yourself!
I will check back later today. Again my apologies for not being available at 1pm.
Always learning.
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Good morning @Strongwoman and everyone. @Strongwoman as always your words inspire and encourage me. Every time I read one of your posts I am reminded that “just because I have been given a cactus, it doesn’t mean I have to sit on it “! Today I will be busy getting ready for family who is arriving from Saskatchewan tonight for my grandson’s wedding on the weekend. It has been a summer of so many good things and I am so grateful to be well enough to enjoy them. I will not be taking part in the Walk of Hope on Sunday due to everything going on around the wedding. I do however have a friend walking on my behalf, in the Victoria event and we have been busy fundraising. We have a heat wave happening right now but the weather is supposed to be a bit cooler on the weekend so it should be perfect for both the wedding and the Walk of Hope.
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@Strongwoman reading your post evokes so many emotions in me…grief, sadness, and even nostalgia and admiration for you as you try hard to stay steady in navigating the inevitability of uncharted waters. I remember my previous partner who passed in 2009 from Stage IV colon cancer. He always chose life, even when death was scratching at the door. After a bowel resection, the oncologist told him that he would have roughly a year to live. He never skipped a beat. We went camping and fishing, and he never talked about dying. Ever. Weeks before he passed, I recall him on the phone planning a fly-in fishing trip to northern Ontario! As his liver started to become compromised, the writing was on the wall. What did he do? He came up with the hot idea to get married. I think he willed himself the strength to follow through. Two days before we tied the knot, he insisted on personally picking out a ring. This was quite a Herculean task because we had just left the hospital, and he had had 5 L of fluid drained. We were married on a Saturday afternoon, and he left me early the following Sunday morning. I guess what I’m trying to say is that I saw him living his life and not waiting for death to happen. He must’ve been scared, but never let me see it.
As you may recall, I was shaken to the core this time last year when I was diagnosed. Weren’t we all terrified and upset by our own diagnoses?!! YOU WERE MY LIFELINE. It was a lot of painful information to process, but you were there for me every step of the way. You have every right to feel shaken to your soul, and all the feelings that go with it. I think about you every single day. You have made such a difference in my life and in the lives of so many people. I am so happy to know that you have supportive friends and family to love and care for you in the way that you deserve. I think it is safe to say the women in this group find you to be a remarkable and truly strong woman. Sending so much love to you today. ❤️❤️❤️
P.S. Today’s drama…Caught a skunk 🦨in the live trap in the barn. It sprayed as I was throwing a moving blanket over the trap. Managed to get the trap door open, and I’m waiting for the stinky little bastard to leave. I had to take a shower and wash my clothes and spent the afternoon resting in bed after the ordeal.
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@Strongwoman - hoping for the best for you and kicking that prognosis to the curb. Remember I was given the 'months to live' prognosis in the Spring of 2022 and I'm still here and every day I say to myself 'Show those damn doctors they are NOT gods and nobody really knows the time and date of our demise." Something may come along - be it a new drug or an integrative thingy that turns this all around for you - you just never know. Try not to let those words live in your heart and head. Boy did they make me angry and my response after the tears and grief was to fight like hell and never let them stop fighting for me either. I know your situation sounds much more further along than mine; I also know of women who thought they had weeks left and are still here months and years later. I really hope you will be one of them. Take care, hugs.
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@Strongwoman
Thank you for sharing your current prognosis as well as your personal thoughts and feelings with us. You are truly a strong and amazing woman! Sending big hugs and love your way 🤗❤️.
It was a beautiful day here for lunching with girlfriends! Hope you enjoyed yourself.A new knitting project…imagine!! The sweaters are wonderful gifts for your Mom and Dad.
Have fun to everyone doing the walk on Sunday.
I am currently in the craziness of pre-trial testing. I start with a CT on Friday, a biopsy (#3) on Monday and a screening appointment on Tuesday. Treatment will start the following week! The trial is Carboplatin and Paclitaxel with an oral trial drug. I will post more details in “trials.” So…back and forth (London-Toronto) I go again!! 🚙🚙🚙0 -
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@BellaDonna1959 I admire the “fight” in you, and think it’s incredible that here you are, getting on with life after being told you only had “months”. there was a lot of grief for me in the beginning too. These days I try not to think about what might happen in the future, and focus on the NOW.
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I do not have any knowledge about clinical trials so will follow your journey in the Trials section of this forum. I wish you luck as you progress. I'm sorry you have to drive so far. Is it to PMH? Not sure if you are aware but they have opened their PM Lodge again. It's designed for out of town patients. Here is a link in the event it's of any help.
Always Learning
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@HorseGirl
The first few weeks of trial are weekly visits with pre-trial tests then Cycle 1 Day 1 is treatment then Days 8 and 15 are for blood draws only. Cycle 2 to Cycle 6 will be treatment every three weeks.
Thanks for your encouragement.1 -
@Alwayslearning
Hi. This is my third clinical trial and my second at PMH. The travel does get a bit tedious. In the last trial (withdrawn in July), I was feeling like I no sooner got home then I was packing my bag to go again. I’ll be at the every three week stage pretty quickly for this trial and am looking forward to that. I have been a regular patron of the Lodge since it reopened at the end of April. I have included much information in my trial postings but never thought to include the link (duh 😵💫). It really is a wonderful facility…I am very grateful that they provide this option for patients.
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https://pin.it/3iLrtCMj4
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@Strongwoman Thank you so-much for sharing your journey with us, particularly this most difficult prognosis. I hope that it was a casual guesstimate, open to change. Doctors have no crystal balls, and I think you have much longer, just because of who you are and your focused energy. Anyway, I pray for you daily,, to Tara, to Mary, to Quan Yin, to the Black Madonna, and all the goddesses who love us….
Its hard to believe it, but the wedding was a whole week ago. Its taken that long for the glow to fade. My heart was full from the rehearsal on Friday, to the last dance on Saturday night. To see my oldest grandson so grown up, so confident, so handsome, so in love, was worth all the waiting. I have known him since the day he was born, and he didn’t have an easy childhood. His bride is perfect for him, and him for her. She is firmly planted on the ground, and I think they will be a very successful couple.
I did a bible reading in the church ceremony, which was a bit difficult for this feminist, because it was a letter from St Paul, and had all his covert misogyny wrapped up in flowery language. At the reception I recited my poem, “The Spider’s Wedding”. It got a lot of laughs. I have a video of it . I danced later, and my husband and I seemed to be the only ones who knew how to do the two step. But the dances these young-uns do now seems to consist of jumping up and down with your hands in the air. Still, it was fun, and I was surrounded all night by my family, which was the highlight of the day for me.
The hotel we stayed at had a pool and a hot tub, I got in the hot tub and didn’t want to get out of it. How I wish we had one. But alas,they are too expensive.
Monday I start chemo. @CrazyCat I have to put off our meeting to see how I am going to be post chemo, but I still want to meet up. I will get in touch next week.0 -
@Hooodith it sounds like the wedding was perfect in every way and I’m so happy you had such a lovely time! Today my grandson gets married and I know it will be a day to remember. I hope your chemo goes well on Monday. I have CT scan scheduled for the 13th so I have a touch of scanxiety but I won’t let it put a damper on the festivities!
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Good Afternoon Ladies. What are you doing on this fine Sept day? I managed to get out and do a bit of gardening this morning. Showered. Errands then prepped dinner for tonight. Now I will rest and have a visit with my elderly Aunt.
What brings you here today and what would you like to talk about?
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Good afternoon ladies
After 2 interviews I just found out that I was selected to join the patient partners in research program with ovarian cancer Canada . I feel very proud to be joining such a worthy cause and it is my hope that I can make a difference no matter how small on the grand scale of things.
@JoanEG with my magical powers I'm pulling some scanxiety away from you. Geez, Friday the 13th they couldn't pick a different day. I myself have a scan Oct 1st and I think I will slap myself if I start to get nervous from now.
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Good morning @Strongwoman and all my Teal Sisters! Last Saturday my grandson got married, it was amazing! I danced so much my legs were sore the next day! My yoga classes resumed on Monday and it felt really good to move my body and work on rebuilding my strength. I have a CT scan tomorrow and a follow up appointment with my nurse practitioner next Thursday at the cancer clinic in Victoria although my GP usually contacts me the next day. I have a bit of anxiety surrounding that but all in all I’m not too worried. I am feeling really good right now so I’m not letting anxiety take over. It is what it is!
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Some shots from Sunday's walk of hope
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Thanks for sharing your photos @melissa. There was no walk in my community but a friend who lives in Victoria walked there on my behalf. We have a family team doing the Terry Fox Run this weekend. It’s a cause that is also dear to my family. My first brush with cancer was malignant melanoma that was diagnosed the same time as Terry was forced to end his marathon of hope. I have not missed taking part in some way either as a participant or volunteer since it’s inception.
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Congrats @melissa I am sure you will find it very fulfilling! Your pics are beautiful. Were they giving the sunflowers out to those who walked? They are beautiful flowers, regardless. You have made some big decisions this last little bit and am proud of you for figuring out what is right for you. Sometimes it takes time to process it all to determine what it is that we need.
@JoanEG I, too missed the walk for different circumstances but am glad you are doing the Terry Fox Run this weekend. It will be equally rewarding and fun for all attending. I am so happy to hear you had such a wonderful time at the wedding on the weekend. Sounds like your body was reacting to all that dancing and well worth every little ache you may have. You have been out moving (yoga, etc) which is good for the body. I am sure you have some scanxiety occurring and hopefully will soon be over with the results. Time seems to be creeping faster and faster as I look at the calendar. One more sleep for you and results will be there. Friday the 13th indeed! I hope you will share your results when you are ready to as we will all be here waiting to support you no matter what is found.
Well, ladies, it is lovely day out and I have decided to bbq for the family tonight. Is it lovely weather where you are at too? I heard we may be in for 2 wks of this nice weather which would be lovely. Some sunshine and a little heat to round off the mid September days.
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@Hooodith @JoanEG Sounds like both had a marvellous time at your grandsons’ weddings.
@melissa Congrats on your patient partners in research selection. I am sure your input will be valuable…I know I always appreciate your support!! Thanks for your walk pics. Looks like it was a beautiful day for a walk.🌻
I have been busy with pre-trial tests. Yes, I am starting trial #3!!
CT - progression as expected.
Biopsy - went very well with no pain at all. I was just drowsy for the remainder of the day and a bit of the next day.
CA125 - increased +5000 - yikes! but not surprising.
I will be starting the trial on Wednesday. It is Carbo/Taxol plus an oral trial drug. Interesting I get to rechallenge Carbo/Taxol under this trial (I have been identified as platinum resistant). So back to hair loss. Nausea may be an issue as it is a side effect of the trial drug too although I never experienced it previously on Carbo/Taxol. I’ve also been forewarned that I could experience a skin rash that is treatable. As with any treatment, we’ll wait to see what this cocktail brings about. I feel good about this team. The trial is gynaecology focused and I have already noticed that they are treating my ovarian cancer. Due to progression and as a precaution they have put me on daily Senokot and a low fibre diet. I am a bit anxious for my first treatment but that’s not unusual for me. Once I see what, if any, side effects I have then I can move forward proactively and just get on with it. I feel very assured that all the stops will be pulled out to get over any hurdles along the way (I.e., low blood counts). There are more specific details about the trial under clinical trials.1 -
@GloHo It sounds like you are in good hands and with a great team this time and that you are content with them as well. They are being proactive with the Senokot and low fibre diet which is good too. I look forward to reading how this trial goes for you and wish you minimal side effects from it. The hair loss is one of those things that we know it happens but it can still be impactful when it does occur. Hopefully slightly less since you have travelled this road before and know what to expect when it does happen. I kept all my scarves and caps from when I lost my hair. I don't know why I keep them but feel it is not something I am ready to let go yet. I have lent them out before and as when one does that, ended up with some that aren't mine and some that are. LOL
Were you expecting your jump in CA 125 to be that high or was that number a surprise for you? Wishing you the best when you start the trial and look forward to your updates along the way.
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@Strongwoman
Since I haven’t had a treatment since July and since I was already in progression with significant CA125 increases, I am not surprised by the jump. Not happy about it but it is what it is.
I only had hair thinning on my treatment with weekly Paclitaxel, so we’ll see what happens this round. I don’t mind the hair loss. I actually find that I am more likely to don makeup and pay more attention to my daily facial care when I’m bald 🤣. I also have a few caps and scarves from my initial treatments but it’s always nice to grab some new ones. Most chemo units have a stash, I’ll have to see if PMH does or not. If not, I’ll drop by my local hospital chemo unit to say Hi to the team there and see what they have in their stash.
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@melissa Congratulations on becoming a patient partner in research. I've been one for several years. It's been a very educational and rewarding experience. You'll enjoy it tremendously.
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