Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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Good afternoon to All the Teal Sisters out there today!
I hope you are enjoying the warmth, sunshine, fresh air and colourful leaves we are receiving before the temperatures plummet for a couple of days.
I will be Moderating today for @Fearless_Moderator as she goes for a drive to take her son back to school. It sounds like she has had some wonderful time with him and am sure it will be sad in a way to see him go.
TO NOTE: Please mark a place holder in your calendar for the Symposium on Nov 8th and 9th which will be hosted on a Zoom platform. There are to be some great speakers and topics, but a solid agenda has not been set as of yet so please stay tuned.....
Yesterday, I went for a walk with my 83 yr old Aunt, at a place called the Cheltenham Badlands. I have included some pics I took while we were there to inspire or share what a miracle nature really is. It was blissfully peaceful and quiet on our walk and we managed to walk for an hour. Needless to say, we both fought to stay awake last night but lasted until about 8pm and then crashed.
I, personally, was feeling a great need for a change of scenery, the lure of nature and what it can do for one's soul and of course spending time with someone that is such a big part of my life.
This past week for myself has been quite challenging with how I have been feeling emotionally, mentally and physically. With the assistance of my palliative doctor, we figured out it was a steroid medication at the root cause of it all. I am thankful we were able to narrow it down as I did not like the person I was being. I didn't even want to be around myself due to the way it was making me feel and act. I also discussed with my palliative doctor the frustration I was feeling surrounding the constant waiting game and feeling like I have to advocate constantly for myself which as all of you know gets so wearing as we go through any physical/emotional phases within that as well as being our own advocates at times.
I guess in the end, the bottom line is.....We all want to make sure we are being "heard" because when we don't it can make one feel quite "powerless".
I am sure many of you can weigh in on any of that in different ways and let out how you have been doing with progression of your treatment and coping mechanisms. If you would like to share any, it may help others out there as well by looking at some ways this can be accomplished. There is no "one size fits all" for any one of us out there.
I, personally, am finding myself in a place that is quite unfamiliar and searching for I don't know what right now. I wouldn't say I am "lost" just not settled and can't focus on any one thing to content myself fully.
I found a book at Chapters and started it yesterday. It is called "Being Mortal" by Atul Gawande. I will share along the way any excerpts from the book that may be helpful to anyone here if I find any.
So, with no further ado from myself........how are you? any topics one would like to bring up? any exciting/happy things occurring (either personally or medically)?
Any plans for the weekend for anyone? We are soon to enter a long weekend and perhaps some will be enjoying time with family or just "being". Whatever it looks like..........embrace it!
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Happy Thursday
accidently discovered cheltenham a few years ago when doing a backroad drive home after apple picking. Unfortunately there wasn’t anywhere near to park, cars parked along shoulder of roads far as we could see. This was pre-diagnosis. We promised we would return… and havnt been able to.I am having hard time with frequent urination. 24hrs a day. No pain, swelling, etc. urinate test all came back normal. Still waiting on culture results. It’s effecting my sleep and I pray at bedtime every night to have a night of sleep.No appetite, and losing weight steadily.Am looking forward to symposium. I am always “surprised” learning something, even if it’s a topic I don’t think applied to me.0 -
@ToughAsTeal
Oh Girl! Your body has been through so much and is continuing to "speak" to you when you wish it not to. I bet it would be very difficult to rest or sleep with that going on and how it makes one feel as well.
How are your supports? Have you felt like reaching out to anyone? It is difficult enough to have the physical to deal with let alone the emotional/mental that is affected as well as lack of sleep etc.0 -
Happy Thursday everyone. I was planning on giving a full report on our meetings in Ottawa last week but I am struggling with bowel issues the last couple of days and it has exhausted me! I will plan for next week but in the meantime let you know that they went extremely well and the progress we have made in such a short period of time had people paying attention! Looking forward to Thanksgiving weekend with our family. Heading to Kitchener tomorrow after blood work and I know it will boost my energy.Have a great Thanksgiving everyone!!0
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@Taita
Bowel issues can be exhausting. Glad the meetings went well and look forward to an update from you in the weeks to come.
Happy Thanksgiving to you and your family as well.1 -
@Strongwoman the lack of sleep is certainly making me more emotional. Longest stretch I can go is 2 hrs nap. Including through the night. This started post surgery when still in hospital but has gotten worse.So great that you and dr figured out the steroid issue. I used to hate the “quality of life” phrase. Now I understand it.1
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I see there are a few others on as well today. How is everyone doing?0
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@Strongwoman I am going to sign out feel I could nap. Happy Thanksgiving gobble gobble0
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Happy Thanksgiving everyone.
I am signing off now too.0 -
Happy Thandgiving Everyone. Sorry meant to join in today but I myself have been again having sleeping issues. went to my GP and i went over my BP as just my Amlodipine isnt cutting it. So we added another one to help. And he gave me some meds to help me get back to a norm sleeping pattern. Whats that i said lol.
On other note went in to get my second gem treatment yesterday only to find out due to my low blood test results they postponed my treatment until hopefully only 1 week until my levels come back up. Wow if my levels dropped after only 1 treatment of the geniticibine i wonder if that cannot be a good sign.
@ToughAsTeal I am so sorry you are going through this. I hope they can track the issue down quickly. I know myself that my last urine test myself 2 weeks ago before starting the gem they found i had a trace of protien in my urine. My kidney function egfr usually is always anywhere from 98 to 104 but the last 2 months been dropping and now at 71. I am also noticing a bit of fosmy bubbles noe too. Which i called and stressed to my oncologist team that lets find out the root of this. I know as we get older your egfr does decline over yrs but not in 2 months. I was on some other meds still for my gastric issue that still am waiting for dome tests to be done.. Yes I know the Avastan can cause some protien in urine. Its been like 6 weeks since my last.
So yes @Strongwoman I agree with you that we are constantly having to advocate for ourselves to make sure we are being heard and that they take us seriously even when we know our own bodies we know when something is off. It can be very frustrating sometimes they say oh its in normal range its good. For me i keep a close eye on my health portal which i can see all my test results. I question and requestion. Because no one will. Oh and such beutiful scenery pictures ty for sharing with us.
I also feel like i need a change of scenery. It gets very lonely here sitting in my house 24 7 other than having my dog or cat. I sit in backyard have been puttering here and their to trim a few needed bushes slowly getting ready for winter. I do love fall with all the changes in leaves etc. Its still really warm here in bc we are still in the low 20 here.
I will been spending Sunday at my daughters house for Thanksgiving dinner.
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Hello Ladies, I've been having issues with my lymph nodes getting swollen and having random pains. Is there something specific I should tell my oncologist other than my physical symptoms? I went to the doctor and she said my bloodwork doesn't show any infection. So now I'm planning to talk to my oncologist about it. I really don't know what if anything this means. It hurts and it's annoying because the pain is random and it moves all over but it's not consistent other than it keeps happening. I feel like I'm being unnecessarily paranoid. Has anyone else ever had anything like this happen to them?0
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Tick tick tick...the clock is moving toward 1PM EST on this Thursday October 13 and our weekly online live chat.
First of all, thanks to Strongwoman for filling in as host last week. I was headed to Ottawa to drop my son at the airport for his flight back to Calgary. A few big hugs and later lots of sniffles and he was on his way. At least the wait to see him again won't be long. Never one to miss the chance for any loot, he'll be back for Christmas. And hopefully my stepson and his wife too. We just heard the baby will be a boy. So now I go on my baby buying spree.
Taita asked about my pups and I'm sad to say that Digger exuberance and speed got the best of him. Somehow a run south down to our lakefront, an evening event both dogs loved, got turned into a chase of something and north onto Highway 33 where in split second he was gone. A truck hit him and he died instantly. So we are now a family of one dog. Ripley is still mourning the loss of his brother but coming around. to some of the benefits of being an "only child".
Many thanks go out to those from OCC representing our needs from the federal government; one of whom is our own Taita. With her background in federal politics and having been on the receiving side that won us a $10M grant she makes an excellent representative. Quite possibly she can talk to the experience when we do our own OVd Holiday Zoom in December. I"m still looking at logistics to make that happen so stay tuned.
Just a reminder to consider attending the fall Symposium in November. There will be lots of meaty topics and past efforts on the part of OCC have been really valued by those who've attended. I know I've penciled in the dates as a reminder not to miss it.Well, it's now close to 1pm. I'm here and ready for you all. So, please say hello. Tell us what's on your mind today,
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@MadBel you commented early today so I just saw your post. I'm no expert in lymph node involvement so can't really offer much myself other than to say you're doing the right thing by pulling in your oncologist for his/her opinion.0
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@Fearless_Moderator I guess. It's really just weird and annoying. I realized I was early after I posted, but that's ok. You did see it.0
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@MadBel
It's always appropriate to seek guidance from your oncologist or someone in your cancer care team when possible symptoms appear and are persistent over time. As we all know, symptoms of our disease are very vague and often overlooked for that reason.1 -
Good morning everyone.0
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Good morning @Eileen....or for those in my time zone Good afternoon. Anything in particular on your mind today?0
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Hi everyone, just joining.0
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Well this week again was a ni go for chemo again my platlets are still too low. And what worse now i find out the chemo team has decided to omit this whole 1st sesson of geniticibine to kerp me on track so now i dont get chemo until oct 26 as next week was suppose to be my week off from 3 weeks on 1 week off0
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N other note i finally go in on Monday for my port0
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Question. At the last OCC webinar on advocating for care, Stephanie mentioned an online support forum partnered with Wellspring. I'm wondering how it might differ or overlap with this forum. Does anyone know more about this? thx
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Thanks @Fearless_ModeratorI do have some news. I started Zejula last Friday and doing well so far. Since I had such a hard time with platelets and following the OCC webinar last June, we decided to start low and work our way up to 200 if possible. I am still waiting for the results of my HRD as well.0
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@Eileen glad to hear you have the installation of your porr finally booked. Hope all goes well. You'll find treatment and blood work so much easier. In Ontario it can't be used for IV's for scans and the like but I heard whatever they use out west in BC the port can be used for more.
As for shifting of your shedule, Gem is a drug that has many side effects and some appear very quickly and often quite intense. So they often give you a rest while they adjust doseages.0 -
For Ontario folks note there were some access issues and I had to wait an extra 2 weeks as Zejula has moved from the Zejula support program to Trillium (provincial drug formulary) which is great but the gyne-oncology team at Juravinski were not aware. I'm on one month with the Zejula support program so the drug access coordinator can work her magic and set me up on Trillium. Sorry if I'm out of sync with any responses but they are coming in slowly.0
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I am late joining in but hello everyone.
@Fearless_Moderator I am sorry to hear of Digger. That very sad. How do we balance sadness with happiness (baby boy expecting!). That is wonderful to hear of the government support! I have signed up for the symposium. I always learn something!
@Eileen I hated those times when I had to delay chemo for reasons beyond my control. I love my port. It has made it so much easier for me
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Re port… here in Guelph, scans, I go to chemo unit, they acess port with a “bigger?” Needle… then port is used for the scan. If I have chemo the next day, we keep it in… if I don’t, then I go back to chemo unit and they unplug me.0
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Good Day all. I just woke up from a nap. Quite nauseated today for some reason.
Just signed up to check out the Palliative Day Program that runs weekly at Hospice. I go next Wed to check it out and see if it is for me or not. Has anyone else done something like this?
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