Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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Comments
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@Strongwoman when you can, can you tell me name of slow release? Percocet has been what has gotten me through. But it can make you constipated so I am only extra strength Tylenol which is doing nothing.0
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@Strongwoman LOL don't look to me to partner with you on the hot air balloon expedition. I am deathly afraid of heights! But it sounds like a fantastic opportunity to have on your bucket list.
As for the "acting", trust me we all turn into pretty capable actors when the need arises to step out of your own skin and be someone else. I think it's a pretty healthy coping mechanism, although as you've experienced there are those triggers that take you back to you and what this all means for you. At least the pretend mode allows you to absorb and begin to process information objectively before reality kicks in.1 -
@ToughAsTeal
Sure I can. Hydromorph Contin
I take it every 12 hours
They based the dosage on how much I was requiring to function during the day with the short acting. I can still take short acting if needed but am to mark it down. If it becomes consistent using the short acting they will just increase the long lasting one once they know,1 -
@Strongwoman thankyou0
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LOL as for the "acting"......at the local drive in this weekend they are playing Grease, Footloose and Flashdance.
If I had it in me, I would contact a bunch of gf's, dress up like the 80's and dance and sing all night long like a young person......BUT....reality is.....I have no energy to do such thing!
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@ToughAsTeal
Np......I hope that maybe your team might feel it will work for you too. I have my fingers crossed for you.0 -
@ToughAsTeal I was hoping you'd be able to check in today. I've missed you too and sorry to hear you're in some pain. You amaze me though that even with that going on, you get around so actively. My husband mentioned the CNE the other day and I had to say pass. I don't think he was really that excited to go but thought it might be an outing I'd enjoy but anything that has a alot of talking attached to it is out for me. The fatigue and weakness in the muscles in my legs just limits my mobility too much. Besides, apparently the Snowbirds have been cancelled and that was one of my primary reasons to go. Sounds like you'll be well taken care of though.0
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@Fearless_Moderator
Now that you have mentioned the fatigue and weakness in your legs.....can you expand on that for me? I am feeling that too. I don't know how to explain what I feel at times in them. It is like I want them to walk or be able to stand on them longer but I just can't. Do you feel this is due to disease or meds we take?0 -
Well ladies, it's time to say goodbye for another week. Stay well and wishing every a wonderful weekend, and that treatments go well for all. We're back to our regular every Thursday schedule so hopefully next week a few of our regulars will pop back in to say hello.
Cheers to all .....
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I have missed all of you .. this one hour is “my” time. Even with unexpected guests, I left them outside with my husband once.
praying for a poop
LP2 -
@Strongwoman before I go the fatigue has plagued me since Day 1 and while manageable with brief naps and Netflix to manage through my nightime insomnia it's gotten progressively worse. I find I still have a 2 to 3 gap at night when I just can't sleep, so after I get my husband off to work I stretch out on the sofa to watch the news but now find myself dozing off into a deep sleep for at least 1-2 hours. Then after lunch the same thing. So I"m sleeping much more of my days away since starting my current treatment plan back in December. Cause? I think it's a combination of things. I don't get anything other than Dex with my chemo and it usually revs me up. So it must be the Avastin and/or Caelyx but probably combined with not getting out enough. I do find if I have an appointment some where or a need to drive into town I'm full of energy. As for the legs I have pretty severe neuropathy below the knees so my old pattern of walking 2- 3 km daily stopped and I truly think the lack of exercise has made the muscles atrophy a bit....at least enough that when I do need to use them they just poop out on me. I've tried all the suggestions and even went on Gabapentin for a while with no luck.0
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Just out of surgery with ostomy. Feeling great thank you pain pump. And fresh spill of chicken broth on my Ralph Laurent hospital gown with minimal back coverage. Catch up next Thursday! Happy long weekend everyone!
and….. keep moving forward!1 -
Your handle is true: you’re tough! Wishing you all the best in your recovery from the surgery. (Ralph Lauren would approve of the chicken soup)2
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Ralph is the hosp gown… but he might end up being ostomy bag name too!?🌻🌻🌻1
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@ToughAsTeal,all the best for a speedy recovery from your surgery.1
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@ToughAsTeal
I love your sense of humour even with what you are going through.
Perhaps your ostomy bag could be a Chanel, Kate or something like that.
You will bedecked in all the latest fashion!
You keep going....you are Tough as your aptly chosen name!2 -
@ToughAsTeal - glad to hear that all went well with the ostomy and all the best with your recovery! What's a little chicken broth to Ralph Laurent?
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@ToughAsTeal sounds like you are on the mend and maintaining your usual sense of humour. I really think you are on to something. We may have to start a designer line of OC gowns. Some dignity and style are called for!! 💕0
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@Taita a gown that covers the derrière! Lol0
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Here's what works for me:
The sleeves have buttons from the neckline down to the cuff and can accommodate all sorts of paraphernalia. Find something roomy that you don't wear too often and get cutting:) 0 -
@ToughAsTeal
Way to go gal. This should shake up that pain enough for you to start more fully enjoying your life again. Wishing you a speedy recovery and looking forward to catching up more at Thursday's chat. Your spirit continues to inspire us all gal. Big hugs to our warrior queen!0 -
I was wondering if there is a teal tea this Thursday, September 8th? I have not joined before, but was hoping to if there is one this week. Today is just one of those not so positive days. I guess looking for a little encouragement right now. Thanks0
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@hope2022
I believe there is.
Do you need to vent?
Do you have supports in place?
We all have some days that are not so positive.0 -
@Strongwoman Thank you for your reply. I live by myself, but do have 2 grown daughter's that are very supportive. My ca125 went up August 12th and I had another test today. With the way my stomach has been lately, I think it may be a second recurrence. It's so stressful waiting for results, as we all know. I was originally diagnosed in May of 2018. I just feel so tired of it all sometimes. It can feel so isolating at times. I don't know if everyone feels like that at some point in this journey. Have you ever felt that way? This forum is really helpful. Thank you again.0
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@hope2022
As for what you are feeling, absolutely, yes! I can say that it have very much felt "tired of it all" perhaps "isolating" in some ways. It is very stressful as we await results. It is the fear of the unknown and hoping all the way that our "gut" and our "head" have been wrong and that our results may be something different than the way we think they will go.
I do believe from previous threads that I read you are HGSC, is that correct?
If so, from what I have read here and some other articles, there are still lots of options out there should you be experiencing a recurrence. Exhausting as it sounds to go through a recurrence and then determining what course of treatment is best for you individually, it will be a relief to know, what you are looking at and then the next steps. You may even go through a period similar to grief. You may experience sadness, anger, ask the question "why me" and please know all of that is normal. What to take away from it all is to ask for help from your team should you need assistance with emotions. They will know who to put you in touch with and sometimes it is good to be able to speak to someone who is not in your support circle. If you enjoy walking, get out there and do it even if it is a short and small walk. If you have any hobbies, they come in handy during these times. Journaling can help. Journaling can look like writing to someone, random thoughts on a page with no sentences and/or writing and then burning it when you are done. Find the way that works best for you. There is no right or wrong.....you will find your rhythm along the way.
I hope some of this helps and please join tomorrow if you are able to. 0 -
@Strongwoman, I appreciate your words of encouragment and support, thank you. Yes, I am HGS 3B, with a recurrence last year. I had 6 rounds of carbo and caelyx, that finished in March this year. I'm currently on 100mg of Zejula. I may be platinum resistant if the cancer is growing, which worries me. I know there are other drugs out there as well. I know you have your own worries going on, so thank you for being a peer support volunteer. I hope to join in tomorrow.0
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Hi all - new to TH but not new to site. Let me know if text is visible to those on today0
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Hi! Happy Teal Thursday. I am a bit doped up lying here in hospital so might not last the hour.0
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Hello, new to Teal Thursday too. Text is visible.0
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Great - I am going through my first recurrence. one chemo in - 5 to go0
