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Hi. Sorry to hear you had such a tough go of it on Cycle 1. Do you know if the symptoms will get better with time? It’s so hard to determine what’s what with the phase 1 trials because it is first in human testing. They may have an idea from patients who have already been through a few cycles?
I did not have any pre-meds on my phase 1 trial either. I didn’t experience any issues so I never even thought about this stuff.I wonder if they’ll consider pre-meds now that they know how you reacted? However, again with the phase 1 issue…they are testing specifically to find out what reactions and adverse effects do occur. I wonder if they can or will offer you a decreased dose? Not sure how the trial is set up in that respect - is each patient assigned a specific dose and that’s it or do they allow for decreases?
Thanks for sharing. These are definitely questions that I’m going to ask prior to any trial.
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@Bojenka Sounds like you had quite the time with the trial. I can't imagine not being given the steroids and then ending up in hospital due to it. How that would make me feel and if I would want to continue with the trial knowing one might experience this every time. How does it sit with you? I know you mentioned going back to a standard of treatment instead. Does that sit better with you? All these decisions are difficult in and of themselves for sure. I wish you the best and look forward to your updates as to what your decisions are going forward.
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Some light for the darkness that I know comes over many of us depending on the day. I hope you all enjoy the quotes I found today and that perhaps one of them will resonate with you and brighten your day just a little!💖
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Thank you @Strongwoman your quotes are always inspiring and helpful.
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Hello Ladies. A little bit late to getting on but I am here now. How is everyone doing? I know quite a few are awaiting answers tomorrow and must be dealing with the anxiety associated with that. How are you enjoying or are you able to enjoy any of summer? What has been on your mind lately? Anybody need someone to listen?
Let us know how you are doing……drop a line when you are ready.
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Good morning @Strongwoman and all you lovely teal sisters! So yesterday I did a thing! My first yoga class since last November! 90 minutes of feeling empowered. I was sure I would feel discouraged by my lack of strength and I have to admit some poses that I previously did quite easily required some modification but I did it! My muscles are feeling it today but it’s a good feeling. I just returned from a dental appointment, my first cleaning and checkup in a year. Teeth are in great shape AND thanks to the new Canadian Dental plan I only had to pay $57 of the $193 bill! Now I’m off to meet my sisters for lunch. Have a great day everyone!
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Good morning beautiful Teal sisters. I hope everyone is enjoying their summer as best as they can.
I’m spending a lot of time in Toronto for the trial at PMH, so it’s a very different summer. I’d rather be boating but believe it will be worth it. Weather has been amazing so that helps. I had an infusion of the trial drug yesterday-my 3rd one- and it’s causing severe pain in my joints so I’m still in bed. It’s exhausting spending 3-4 days a week in Toronto-I’m used to a very slow, relaxed pace.
I have a CT scan on September 4 where we’ll see if the treatment is working. 🙏
I’m finding that a lot of people are reaching out wanting a visit, and I’m finding it overwhelming. I want to see everyone, however it’s hard to plan when I don’t know how I’m going to feel on any given day. How do you handle this situation?
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@JoanEG Sounds like the yoga was good for you in many ways despite being a little sore today. Hope you enjoy a lovely lunch with your sisters. 💕
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Definitely not the summer you may have thought would be in your future, that is for sure @Sandi6 But then again, none of us know what is in front of us and what we will do with what we are given.
Sorry to hear you are so sore from the infusion. Is this normal and does your team have any helpful tips or tricks for you? Or is this all new to them too as far as side effects that one might go through?
As for the company and feeling overwhelmed. It is best managed by you. I think the best answer to give is to be honest and say "we will take it one day at a time and see what the day brings". You could then ask them to check in with you the day of and you could let them know if you are up to a visit or not AND I would specify if you are up to a short visit or not. Like a half hour or hour one. I would also suggest you do your best to space people out. One or two in a day if you are even up to that and only so many a week. People don't process how wearing it is on us and that it does takes its toll on us physically as well as mentally/emotionally when they visit. Would doing or saying something like that help you when you talk to people who want to visit? Would it lighten the feeling you might have of that it is more on your terms rather than an expectation that they can come whenever? All of this is hard to navigate for sure. Whatever you decide, make sure it is in your best interest and you are getting the rest you need. You need your strength for what is ahead for you and side effects can seem worse when more fatigued. Hopefully some of this helps you navigate what you asked and you come up with a solution that will work for you. 🤗
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@Sandi6 I found that quite a few friends already knew that I would be tired from socialising and would ask me if I needed to stop. Others I had to explain about how chemo drains you of stamina. Not knowing how I would feel on any given day was difficult and there are some people who I still have not visited because of time conflicts. People just dropping in are the hardest to deal with. I find that I cannot just say it isn’t a good time, as they have made the effort to see me. So I end up tired and cranky. Its a hard one, for sure.
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@Sandi6 I totally get what you mean about severe joint pain! The further along I am in Bevacizumab treatments, the more pronounced the joint and muscle pain has become. Even shifting in bed sometimes hurts! I try to take Epsom salts baths and also find swimming helps. The buoyancy of the water enables me to move my limbs more freely without gravity holding me down. If I am feeling really stiff, I use walking poles. The joint pain changes from day to day so it can be hard to make plans. Toronto would definitely be a lot if you are used to a less fast paced life. Insofar as visits with friends go, have you considered using FaceTime until you feel a bit better?
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@Sandi6 Looks like you are receiving some helpful tips/tricks to deal with visitors. Hoping something will resonate with you and you can find a balance to it all. That it will be nice for you to have some visitors but that you receive the rest you need when you require it. A balancing act for sure. Let us know how you make out and if you come up with something that works best for you. In the meantime, take care of you because you are the most important person in the equation and hopefully some of those side effects will lessen with time.
Take care! 💖
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@Strongwoman thank you for keeping me inspired. 🫶
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The two baby blankets I completed.
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@Strongwoman the blankets are gorgeous! I have never been able to knit or crochet and I greatly admire those who do!
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@Strongwoman beautiful blankets I especially love the , what colour is it? Magenta?
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@Strongwoman thank you for sharing those photos! Beautiful work! Wish I had the patience to learn such skills.
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@strongwoman such beautiful blankets.
Today I am dealing with two things. My pleura was drained yesterday at the hospital, they got 1130 ccs. A definite sign of disease progression. Today is the third anniversary of my friend’s death. Because of my diagnosis and all the subsequent problems I had, I have not had the emotional space to grieve the loss of someone who came to mean so much to me, both musically and personally ( always hard, anyway, to separate the two ). But I plan to join a local grief group in the fall. It was a hard day anyway, and I have spent it in bed.
I decided on a legacy project: We have always been a singing family, with lots of fun songs on trips and round campfires. Some of our songs are not well- known, some are. I am going to print the words and video me singing them. And give the whole thing to my son, who has a wonderful tenor voice and is amazing with kids. I know he will keep the traditions alive with his grandchildren, just as I did with his kids, and still do with my younger grandkids.I hope my voice holds up.
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@Hooodith I’m sorry you are not feeling well and that your grief is also weighing you down. Spending the day in bed sounds like a much needed rest. Also your plan for your legacy project sounds amazing! What a beautiful way to not only pass along your voice but also pass the torch to your son. Wrapping you in a warm hug on this dark, gloomy day. 🫂
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@GloHo I decided to continue on trial since doctor agreed to one steroid and a couple anti nausea drugs . So far no nausea and vomiting. Trying hard to stay hydrated and eating more protein to rebuild the much needed energy after chemo.
@strongwoman yes those are beautiful blankets, you have such talents.
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Thank you ladies for the comments. I am enjoying making them and gives me something to do.
🤗
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@melissa Yes, I would probably call that magenta myself.
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@Hooodith I am sorry to hear you had such a dark and down day. It sounds like you were able to find a way to navigate the day and get through it. I am thankful that you are on the other side of it today.
The draining of the pleura does sound indicative of some progression but thankful they were able to drain it and hopefully you have some relief from it.
Your idea for your Legacy project sounds wonderful, and so fitting for you and your family. I wish you much happiness as you start creating this for them. I found it can bring great joy when creating the projects and hope it does the same for yourself. 🤗💖
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