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@Strongwoman thank you. I spent yesterday evening making a list of all the songs we sing and got lost in nostalgia. I remembered, too, that my twin grandsons, one of them in particular, loves to sing and joins in enthusiastically and asks for specific songs he remembers from the time before. Making music and singing happens in a particular area of the brain and contributes to academic success, so I will be leaving them real world benefits.
When I walked into the drainage suite of medical imaging on Tuesday, I was surprised to find that after a year, they still remembered me. When I told them about the wedding and my poem, Jane insisted that I bring it in and let them read it. This is so different from the chemo suite, where the nurses are very professional and careful and knowledgeable, but do not encourage anything personal. They definitely do not remember one’s name even if you have just seen them three weeks prior. Someone should tell them what a difference it makes to be treated like a whole human being, and not just an IV tube, not just a cancer patient.
Grumble, Grumble….1 -
Good Afternoon Ladies!
I found this today and thought it fitting to start us off today. There is a lot of conversation going on and some of it has to do with our journeys and where we are all at within our own. There can be ups and downs along the way and are normal responses to what we truly live and experience on a daily basis. Remembering to love, laugh and forgive along the way is excellent advice. We can sometimes get lost and not be able to see the forest for the trees some days as the darkness descends upon us. It takes incredible courage to rise up and to find a way to laugh that day, find joy or revel in the knowing of how deeply you are loved on a daily basis. As your journey goes on, you will reflect on the past and for most will want to come to terms with past mistakes or regrets and find a resolution to them. Something that will bring peace to your soul and allow you to carry on…….which is the word forgiveness. I know I have found ways to do this and no longer have all that heaviness in my heart anymore that comes with carrying around the scenarios or negative emotions associated with the past but instead wanting to find ways to mend instead and forgive. To be able to either say the words directly to the person or to leave them the words in a private note/letter is all it takes. It truly is up to you and where you are sitting on that given day. Where your mind is and how you feel that certain person will receive the information you want to convey to them. What used to be "important" or wanting to be "right" no longer matters when you are on a journey such as ours. What matters are who you allow to be in your circle and who shows up. Sometimes we can be surprised with who that is and suddenly you are re-evaluating your relationship with that person and what they mean to you. The drama and energy it takes to upkeep the negative emotions is draining on us. We have enough that drains us physically, emotionally and mentally that clearing the space for the positive and the wonderful people that want to surround you fills you up instead. One starts to find joy in little things and reflecting back on one's past can bring a wide smile to one's face as you recall a story or situation with that certain person. Finding a way to laugh at little things and as they say "don't sweat the small stuff" becomes easier for us. As we compare what we live every day against what energy it takes out of us to be in a negative frame of mind and try to get through the day versus changing that negative to a positive and how we feel inside and out instead. For some, forgiveness will not come easily and may take some time as one processes through it as you live your life every day. This may take time and if it does, that is okay too as we focus on what is really important to us, as individuals, and who we want to surround ourselves with along our journey. Our journeys can look similar but the outcomes can look very different. We don't know which hand we have been dealt and is why it is even more important to focus on today and what it may or will bring us. It could be that a special person reaches out, drops in, says just the right words or shows you in some way just how much they love you that can turn your day around. Our connections to our support groups matter and there are days that they are all we need. It could be something they post and show us, something they say, words of encouragement or that they "just get it" that shifts your perspective and shows you how not only important but solid of a community we have in our group. That the dynamics of the group are ever changing but what does remain is the impact that is left on you on any given day.
I am thankful daily that we have this forum and can express whatever it is we need here in a safe environment with like minded people who know and understand what we may be going through on any given day. That there is strength in numbers and although I don't see posts from all of you, I know that a fair amount of you come on to read to see what is going on. Some of you that do this also "pop on" every once in awhile and state that something really resonated with you and how grateful you are to have read it. For those of you that do, thank you, it means a lot to many of us. Wherever the words of encouragement come from it does not matter compared to the feelings you get that go along with it. It may be the 'right' thing that day to cheer someone up and put that smile on their face. As we continue along our journeys, let's say a big "THANK YOU" to all of you out there. That not only do you face and navigate your own journey daily but that you find a place to come to and perhaps lighten someone else's day even for a few moments and to let them know they don't stand alone. So, continue to do what you do and utilize this forum as a way to help not only yourself but others through the darkness the disease takes us through and encourage the lightness to shine through when we can. Hopefully someone is smiling today as they reflect on something positive and light that brought joy to them and lightened their hearts at the same time.
So, ladies, I have said enough………..where are you at today and what would you like to discuss or share? Any plans coming up?
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@Strongwoman as always your words are so insightful and inspiring. I am so thankful for your wisdom and for all the teal sisters on this site that share their journeys and support one another. The power of community is strong!
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I had a phone appointment with the nurse practitioner from the Victoria cancer clinic this afternoon. Just a routine conversation to see how I was feeling with taking the Olaparib. I am so fortunate to have her as part of my team, she is amazing! We talk as if we were old friends! She is smart, caring and funny and she gets things done! She has ordered a CT scan for next month and sent requisitions for my bloodwork prior to my next round of Olaparib. She will see me in person once she has my CT results and will make sure my appointment is scheduled for between 10 am and 1 pm so I don’t have to deal with rush hour traffic! @Hooodith you really should try to get her on your team.
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@Strongwoman the depth and thoughtfulness of your words never ceases to amaze me. No matter the trials and tribulations of your own personal experiences, you continue to lift up others. I find myself with little to contribute these days as I am rounding out a full year since debulking, chemotherapy, and immunotherapy. I went for my last Bevacizumab treatment yesterday, but it didn’t happen. Apparently the funding approval here in Ontario is for 17 treatments, that would have been number 18. IV was already in and ready to go too! Every cloud has silver lining, and I was glad to NOT receive it. The side effects were really kicking my butt…sore joints and muscles and high BP. I had even considered cancelling the appointment. Sometimes I think my mind and body are playing tricks on me. Yesterday I could barely walk and was so tired, but today I felt entirely different! It was like night and day…cleaned my barn, the house, and even cut the grass. The mind is a powerful thing. I’m grateful that some positive thoughts reemerged, because I started to feel depressed and anti-social, maybe even downright angry about feeling so crappy! Now that the Bevacizumab is behind me, my mental outlook has improved. I await an appointment for my next CT scan to see what’s happening, but I’m going to try and stop thinking about stupid cancer and the inevitable reoccurrence. Need to be in the NOW. For all of you fighting this disease, please know that I follow your posts and am sending my best wishes as we navigate this challenging path together.
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@Bojenka
So happy to hear that they are able to add the pre-meds to the trial and especially happy to hear that they did the trick for you.
After doing some research, I have discovered that I am definitely not eligible for the Fontana trial. I am meeting with an Onc at PMH next Tuesday to get a second opinion on next steps and whether or not there are any trials available to me. 🤞0 -
@HorseGirl I have had many many more than 17 Avastin infusions - you could ask your oncologist to petition Health Canada for you to continue if the doc feels the protocol is keeping you alive.
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@BellaDonna1959 thank you for your advice. I will discuss next steps with my gynaecologist/oncologist at KGH after my next CT scan. She is a wonderful physician, and I’m grateful to have her. She is also a department head at Queen’s University, and I feel in very good hands. For now, I’m happy to be off Bevacizumab, and am already feeling more peppy.
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@HorseGirl Sounds like you are on the right path for yourself and already experiencing some changes you have been waiting to surface for awhile. For that, I am happy for you. I hope every day gets better and better for you. I will await to see what your Gyno/Onc recommends at your next appt and what your decisions are around it. Make sure you give yourself time to process what ever info is sent your way and that you choose what will work best for you and your own unique journey. Glad to see you are back out in the barn, puttering around and enjoying things again with less pain.
And yes, do your best to live every day for what it is……a gift and all it has to offer that day. Recurrence looms in the back of many of our minds as we know the data strongly supports experiencing it at some point in time. My advice is this, do all the things you want to do while you feel good. You will look back later thankful you had the foresight to do these things when able and be able to pull it from your memory bank as you look forward at a new reality (whatever that is). I know I do. To think that the last 'real meal or food' I had was Christmas time last year is crazy but it is true. My diet had to be modified for my own benefit and to reduce the repeated bowel obstructions I was experiencing. I miss food so much but don't begrudge anyone eating in front of me or making it for the family. Thankful for all those times we would randomly grab a bite to eat together (hubby and I or friends) with no limitations for myself and how much fun it was. Now, we do day trips and try to find places that I can eat within my new diet parameters to still create memories together. There are days, I do and get a lot accomplished at home and others, I throw it all out the window and do whatever I want or don't want to do depending on how I am feeling.
So embrace feeling better and all that it allows you to do. Meet up with those friends and family, have those laughs and create joy and memories that will last forever in their minds and hearts. 💕
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@JoanEG Sounds like you are happy with your current team and conversations you are having with them going forward. Looks like the support is there for your team which is huge as we know and that you aren't fighting for everything along the way. Glad you are feeling good or better and able to do more on a daily basis. Thank you for also encouraging our @Hooodith to connect with alternate team members and/or Gyno/Onc with her own journey. Feeling like you are 'stuck' and not supported is difficult. Looking forward to seeing what is next for you and all that you have planned for 'fun' in the meantime. How is Stevie these days? Growing like a weed I am sure! They change so much in those first few weeks, it is beautiful to watch. Definitely puts a smile on my face when I see the little faces and just how happy and innocent they really are.
Whatever you are up to today, enjoy! Hot again here today so whatever I do will be inside work. I am completing a knitting project a friend gave me and did not complete. It is a sweater which I haven't done in awhile. I have a sleeve to complete and then put it all together and will be done. They don't want the project back but I do want to show them I have completed it. Nice to switch to a sweater instead of the baby blankets I was doing. Who knows what the next project will be after that…..hmmmmmm😛
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@BellaDonna1959 It has been awhile since you have posted. How are you doing? I think you were planning a family trip. Did that occur yet or still coming up? Where were or did you go? Let us know and let us live vicariously through you for those of us that can't get out to do some travel far away. It is always nice to read about.
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@Bojenka Thought I would check in and see how things are going. Are the pre meds helping? How has the fatigue etc been? Where are you in treatment and how many left to go? Balancing the fluid and protein intake can be hard but necessary as we go through our treatment journeys. Let us know when you can where you are at.
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Good morning @Strongwoman. Baby Stevie is indeed growing and changing everyday! Last weekend was one of my great grandson’s 3rd birthday so I went to a party for him on Sunday. There were so many toddlers and babies it was wonderful! We have had cool rainy weather but summer is finally making a return. Today I am going in to my office for a couple of hours to catch up on the bookkeeping then I plan on getting out and enjoying the sunshine!
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@Strongwoman We went just for a cottage rental weekend but I was sick with a stomach bug most of the weekend. I am going with the kids and grandkids to the Dominican Republic in November for an all-inclusive trip as long as I'm well enough. I have had 8 weeks of a cough and 8 weeks of the runs so it has been pretty miserable through the summer. I think I am finally on the mend. Tested negative for C-diff, other bacteria and parasites thank goodness.
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The Teal sisters who travel to foreign countries, what is it like getting medicalinsurance when you have active cancer? Is it an arm and a leg situation? I sort of gave up on the idea, but Costa Rica keeps calling to me. I have never been to a tropical country and I hear that CR is one of the best. Any advice? Information?
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Sounds like a plan! @JoanEG So wonderful to have the "littles" around you. They have an energy about them that is infecting in a good way. Glad you got out into the sunshine. Catching up at work must feel good too.
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@BellaDonna1959 That sounds rough! So sorry you continue to experience symptoms like that. Thankful it isn't any of the BIG bugs and that they have been ruled out for you. Hopefully the symptoms go away in time for your trip in November. Sounds like it will be a nice family trip long overdue. A time to make some memories with them all as you enjoy the sun and the fun!
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@Hooodith I believe there is a topic thread on travel insurance. Just type the subject into the search bar and it should come up. Costa Rica is a place that was on my bucket list and for those that I know have been there, enjoyed it very much. If you do decide to go, I hope it is all that you want and expect from a destination. Planning something like that can be very uplifting and give one something to look forward to.
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Hello Teal Sisters. This morning we are off to the hospital to see if my pleura needs draining, and if it does, to be emptied for the wedding. Then shopping in Nanaimo, then home to do the last of the prep as we are leaving for the hotel tomorrow, plus the rehearsal and dinner afterwards at the bride’s parents place. I am getting quite excited, particularly as most of my family will be at the wedding. Afterwards, on Sunday, we will be hanging out with my middle son’s family at the beach, as they are staying an extra night.
Then its back to serious business, as I begin another round of chemo on Sept 9th. Just Carboplatin. I was pleased to find out that it only takes half an hour for the infusion.
I hope everyone has a lovely long weekend, with family, friends, good weather, good times…1 -
@Hooodith Such an exciting time for you! It all sounds delightful and bound to be a good time had by all!
Sorry to hear that you have to take a hospital trip this morning. Best to get it dealt with and out of the way though before the wedding. I am delighted to see you so excited by it all. It puts a smile on my face when I think of it and read your words.
The serious business will be there for sure and you will deal with that when the time comes. The infusion does sound like it will be much less time at the hospital which is good. Much more manageable.
You enjoy it all and soak in all that family time! 💕
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@Strongwoman…Hello, thanks for checking in. Ah so the medical trial and second infusion. Yes the meds ie Dex and a couple of anti-nausea drugs helped tremendously. It was a completely different week for me. The only side effect I had to contend with was a spike in the count of 2 pancreatic enzymes. So doctor ordered a CT scan and a couple of extra blood tests. But after a few days the enzymes returned to norm and I am hoping to a few days rest at home. Looking forward to this weekend without appointments to go to.
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Hi everyone
Just checking in early…expecting the fam this afternoon for the long weekend. Busy doing some prep for that today. Time is just flying by, isn’t it? Not sure what I’ve been doing…a little of this, a little of that. The most consistent thing in our life is our puppy’s exercise requirements!!🐾 She has an abundance of energy. We get her to the dog park most days and have recently taken her to a dog beach about 1/2 hour from home. It’s part of a conservation area so it’s not that busy (you have to pay to get in). But it is well worth it!! After getting over her uncertainty of waves, she loves it. The beach itself is very clean. There is a shallow sandy bottom that goes out so far that my husband has to wade in quite a ways to get in far enough so her feet are off the bottom and she has to swim to the ball.
On the medical side…. I had my consult with the PMH Onc on Tuesday. My appointment was at 2 and I didn’t get out of there till after 5 BUT they looked at all potentials for me and I am signed up for another trial. It was nice leaving there with some direction. Now I just have to go through another biopsy and a battery of tests to confirm I meet all criteria. The trial will consist of Carboplatin and Paclitaxel with a trial oral drug. So…back to hair loss and head covers 🤣🤣. I am happy about this decision and am looking forward to seeing what happens with this trial. I’m just getting my head wrapped around this and will put more details (and my commentary 🤣) in the clinical trials discussion.
Have a great long weekend everyone!!1 -
@Bojenka That is wonderful that your team found a 'cocktail' that works for you post chemo. It will be a game changer for sure. I am thankful they were able to as it will make it easier on you. Some rest at home is always best for us as we heal better there. I imagine a weekend without worrying about appts will bring comfort to you as you head into it. It will be nice to be home, let the day be what it will be and go with the flow. Take every day for what it is and go from there.💕
Thank you for updating and sharing. I wish you much comfort this weekend in your home. 💗
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@GloHo Time does fly by doesn't it? And we look back and see we filled our day without really having an agenda or plan. Some times it is the way to be. Sounds like you have found a wonderful place to take the dog despite having to pay. It sounds well worth it for all involved dog and humans. Dogs can be a good distraction and they love unconditionally too.
I am happy to hear that it was a productive meeting at PMH and that you qualified for another trial. It sounds like you are happy with the outcome as well. A few more tests and then you will be able to start……always a few hoops to jump through first. I look forward to reading your update in the trial section when you are ready to do it. It is always interesting to read what is available and how they proceed with things. I am sure it very useful info for many with the same type as yours either for now or in the future.
You will be busy getting ready for your afternoon and will be missed today. Enjoy the family and the time you will have with them. It is always nice to see family. 💕
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Truer words could not have been spoken! We all wake each morning not knowing fully how our days will go. If this disease has taught us nothing it is to take what is thrown our way and "roll with it". Since the beginning of our diagnosis, each and every one of us, has done just that. We learn to adapt to what becomes our day and adjust accordingly. This can be physically, mentally or emotionally, We essentially become 'masters' of adapting to the ever changing symptoms that we are experiencing topped with the emotional/mental that goes along with it. Our family and friends watch from the side lines as we take each and every situation for what it is and somehow find a way to turn it around as positively as we can. Some days it is easy peasy and other days it is a challenge to do it but we find a way. It is up to us as to how our day will continue to shape and how we roll with it. There are some dark days and they are allowed as they shape us too in a different way. They allow us to process the changes in our own way and find a way to continue on. It is the balance of both kind of days that urge us to continue down our paths as they unfold before us and find the joy in the abundance of family and friends that rally around us as we continue on our journeys supported by many. 💕
Today is our 'new' day. How is it for you today? How has your week gone? Any plans for the long weekend? We are doing a play it by ear and go with the flow kind of weekend. One son has to work until Saturday and then is off Sunday and Monday and the other one is off now and at the Ex today. He had big plans in seeking out interesting food vendors at the Ex and hoping it wasn't too busy today being a Thursday. I am looking forward to hearing how his day went and all that they did while they were there. Some times it is nicer to live vicariously through them and not have to experience the day ourselves. It can be exhausting listening to them let alone experiencing their days. Today I accomplished vacuuming and mopping the house. That was draining enough for myself. It felt good to get it done and know that is one less thing anyone has to do this weekend.
Went to my Palliative Day Program this week and our friend that is now a resident upstairs came down for the entire group. It was so nice to see her and have her join us. She kept saying that she woke that morning wanting to experience a "normal" day. So coming down to group would have encompassed that for her. I am sure it was a welcomed break for both herself and hubby as they transition into their new norm which I am sure is not easy to accept by either party. Another example of how we can have "an amazing new day" as the quote says above.
Ladies, it is probably now time to release this diatribe of mine and find out who is out there today and would like to join in. Or………who is out there and can only join in later. Either way, I am around and will respond accordingly. So come on…..join in and share what is going on in your world. 💞
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Happy Thursday everyone! My legacy work continues in providing experiences for my grandchildren. Yesterday my oldest grandson(12) asked me if I would host him and two of his friends at our cabin, which is only about 15 minutes away. I was feeling a bit tired, but then considered that this would be their “last hurrah” before school starts. Also, as he ages, the reality is that eventually hanging with Grandma might not hold the same allure. My hubby went out with me and gathered up lots of firewood and started a fire. We watched, with smiles on our faces, as they argued with one another about how to put up the tent. Then there was the usual teasing and running around, and I laughed to myself. They put an inflatable boat in the weedy frog pond. The squealing and shouting when the cold water got in the boat, is always quite funny to me. Watching them brings back the halcyon days of my youth when I would spend countless hours in the woods, catching frogs, salamanders, toads, even a snake or two. Hubby went home to look after the animals, and my best friend showed up. We sat around the campfire with the boys and introduced them to some of our music…we sang Country Roads by John Denver, among other tunes, then the boys suggested that we listen to Mötley Crüe ha ha. The kids slept in the tent and we stayed in the cabin. We figured the boys would be up half the night, but they actually fell asleep hours before us! Instead, two middle-aged women stayed up until 1:30 AM listening to music from the 60s and 70s and singing at the top of our lungs! So much fun….As we listened to Dust in the Wind by Kansas, we were gently reminded of the inevitability that “ nothing lasts forever, but the Earth and sky”. And that’s okay.
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@HorseGirl , what a lovely experience! I’m sure your grandson will remember this and count this amongst his favourite moments with you! ❤️
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