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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@Fearless_Moderator so glad you are home!!! I am just popping in to say Hi. I cancelled my flight to Mexico late Tuesday night because our whole family came down with Covid. It is a bit rough but getting through it. Have a wonderful weekend everyone.I will be napping. Lol!0
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@ToughAsTeal
a big fat juicy steak. Strangely it wasn't as satisfying as I'd expected and after three weeks of eating almost nothing but steamed salmon, strangely, I still crave it. Regardless, it's wonderful to have choice again.
@Bojenka thanks for the lovely welcome home. Yes, it was a reminder of how lucky I am when I am home. It was also a reminder not to assume everything is cancer related. Self diagnosis can be dangerous and I"m so glad we did catch the strep effects1 -
@Taita ah sugar, I know that was going to be a good getaway for you. I hope there will be another way for you to at least get the mental break away.Last week I had recommended a move on Prime called The Estate. Turns out there are two recent movies with exact same title, one is much more rated R from what I could tell and IS NOT the one I watched!! I was worried what you must have thought of me! The one I enjoyed has Kathleen Turner, Anna Faris, Toni Collette, David Duchovny (anyone else see his resemblance to Walter Matthau?! Yikes! Haha)
have a good rest and a quick bounce back😀1 -
I will be off now as I have a once a month HopeSpring support group on Thursday also. Wishing everyone good week and hope to chat next Thursday.0
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@Bojenka have a good week!0
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I was going to watch the Estate last night....not the R version LOL....but fell asleep. Maybe tonite. And yes, now that you omention it, Dukovny does bear some resemblance to Walter M one of my favorite grumpy old men.0
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My daughter has to watch the 1957 Henry Fonda version of 12 Angry Men for her 3rd year crim class and is going to save it for me so we can watch together next week! She knows me so well! I will I’ve to watch that again for the umpteenth time! Then discuss!!!I have had difficult time lately with pain management and on Monday was put on Cadd pump so I get 24 hrs of hydromorphone via IV plus can press button for extra shots. So far so good.1
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Welcome back @Fearless_Moderator. So glad to hear you're back home and resting.
Update: My hand and foot syndrome took a lot out of me, but it has eased and I am now able to walk and use my hands. The only nuisance I have now is the hard, dried up skin over my blisters (hands and feet). Because of the blisters, my treatment has been changed to Avastin only until I go back to see the Dr in a month. The Dr wanted to discontinue Caelyx, but my Nurse Practitioner argued for a reduced dose instead. So glad she has my back.
My Dr situation has been inconsistent since July and I have been getting antsy (angry) about the ways things have been playing out. My oncologist retired in June, had a temp until Dec, new Dr started Dec. I saw new Dr at the initial appointment and the end of my second appointment because I had a question only she could answer. Then my last two appointments were with different Drs. Found out that my new oncologist is off on a medical leave herself. I hope she is okay, but do you not think someone could have informed her patients about what was going on instead of leaving us hanging. In any case, I complained about seeing different Drs at every visit and told them I wanted (expected) consistency in my care...that they should assign her patients to specific Drs for the duration of her leave, rather than leaving us to see whoever is available. I believe I am now assigned to one Dr (the squeaky wheel). Will find out when my next appointment reminder shows up in the mail. If not, hmmmm...the patient care department is going to be hearing from me. I feel that I shouldn't have to advocate so hard for the care I need...but if I don't, who will? I don't think asking for consistency is asking too much. I need to be able to trust the Dr, to know that the Dr has my best interests in mind when things happen and if the Dr doesn't "know" me, I'm afraid that's not going to happen.
Overall, feeling much better, my head is a lot clearer and I'm not as tired. I want to plan a getaway for a night to Niagara (or somewhere) for hubby and I before my next Caelyx infustion (just in case)!
@Taita Oh my...so sorry to hear your household has Covid and that you had to cancel your Mexico plans. Take care of yourself and get better.1 -
@ToughAsTeal so sorry for the challenges with pain. At least your care team is responsive and you've got the ability to self medicate when there is breakthrough discomfort. I hope it continues to give you relief and the movie provides a good distraction. I remember rhat version of the movie....brilliant.0
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Hi everyone, just joining now.
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@GloHo self advocacy… something I have learned and continue to learn. I am not sure why I throw in a dose of apology that I am self-advocating (is that a word?!). I imagine some might not know there are avenues for patient care. Maybe because of other holes in the system that I think have been exposed because of the stresses of COVID on our health care… on everything. Strong articulate voices can make a huge difference towards improvement.Sometimes, we need to lean on those strengths of others when this stupid cancer is zapping us of every spare bits of energy. Know you are definitely not alone in your experience.🌻🌻🌻🌻1
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@mjmck21 helloooo! How have things been for you?1
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@GloHo
Thanks for sharing your frustration with your care, although it does seem you're now on the brighter side of side effects. How wonderful to feel your nurse practitioner has your back. I hope the lower dose has some positive effect without replicating those awful side effects.
Thank you for speaking up about the care model at your cancer clinic. Yes, we should have the right to expect some cosistency in the care we receive. Managing the changes that go on when our medical teams are short staffed is not a forte of the medical profession. And it's so easy just to tell us what's happening and what the plan is so our expectations can be managed. The more we speak up the better rhey'll get the message.
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@GloHo I'm sorry about the inconsistency as well. Absolutely you deserve this!. I'm learning more about the mind body connection through Wellsprings Healing Journey workshop series that I mentioned in an earlier post and needless inconsistency can, depending on the person increase our stress levels and leave them elevated. This does not help our bodies to fight and manage cancer. I'm over generalizing here but the simple act of letting you know should be considered part of your care. I do recommend this series for everyone though. I'm learning so much and its giving me some agency over my illness.
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Well ladies it's that time once again. I"m so glad to have started my catch up but see from all the activity over the past three weeks there's a lot for me to review. Take care everyone. I hope this coming week finds us all with continued strength and stamina to carry on. See you all next week.......
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@Fearless_Moderator soooo happy to see you are back and better!0
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@ToughAsTeal I'm much better thanks! Most symptoms are under control with the Taxol/Avastin combo and I have some good energy this time. Not a cure but the runway has been extended once again for me.2
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@mjmck21
@Fearless_Moderator
@ToughAsTeal
Thanks to you all.
I have been meaning to take a look at Wellspring's programs again. I did the exercise program when I was first diagnosed a few years ago, but haven't hooked back up with them in this latest round...mostly due to COVID. Thanks for the reminder and the link.0 -
@mjmck21 you actually have put a very clear visual runway into my brain!!!I need to sign off now for needed zzzzzzzz. Have a good week everyone. I think every province has a long weekend coming up although not called family day everywhere.keep moving forward0
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@Taita
Hi. I noticed that you had indicated your were having problems with your eyesight. I have also been experiencing deteriorating eyesight, my team is just telling me not to do anything (i.e., see an opthamologist) until my treatments are finished. I had noticed that my eyesight was getting worse over the last few years, but Inoticed a signigicant decline since I began Caelyx/Avastin. You mentioned that you thought it began during a trial you participated in. What drugs were you taking? You also indicated that it seems to be coninuing with the Taxol/Avastin combo you are on now. How are you doing now? What has your health care team suggested for you?1 -
just joining now
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Good Afternoon everyone. Seem to always miss the meetings but always read them while i eat brunch to catch up.
Welcome back @Fearless_Moderator. I am glad your feeling better. We missed you. That must of been very tiresome to have to endure those three weeks in their. I hope you had things to keep yourself busy. Stupid covid you would think it would dye off by now but nope.
@Taita. So sorry to hear you had to cancel your trip because of covid. I do wish a speedy recovery for you and your whole family. Maybe you will get to rebook i hope.
@GloHo. I totally agree. I find we have to advocate for ourselves. I found that and voiced my opinion as well and now With me i am grateful i have a good oncologist. She lets me know if she is going to be off and she always puts me with the same other lady oncologist who is part of her team. She knows me well enough now, as i asked if something is going to be changed or plans that we made in regards to treatments that she calls me personally and that i don't hear it after the fact from a nurse.
@ToughAsTeal so sorry to hear about your pain. now that you have your machine i am praying it gives you the relief you need.
As for me I seem to continue not getting the day 15 with gemiticibine. As my platlet count this time around dropped down to 46 i believe. During this time i also take a break from my blood thinner injections for a week as well that My oncologist and i made a plan to just postpone it a week if it happened where my platlet dropped. Also my oncologist called me and said after speaking with the cancer pharmacist upstairs they said if i do end up getting gem on day 22 my platlet would not be fully recovered enough to end up maybe getting day 1. And i might end up getting that postponed. So ok back to omitting day 15. On other hand been on mitzerapan or something like that to help with sleep. I do get a bit groggy from it next day. Some days i don't take it for a few days just to give me body a rest from this. I find my head clears anyway. My ca125 levels did go back down a few. Last time. As for my kidneys yeah my gfr seems to be staying around mid 60 now. Hopefully they dont get any worse. My next ct is suppose to be next month in march. I spoken to my oncologist a few times about a second debulking. Ladt time i spoke to her after we do my ct after my 6th cycle she said she will present my case. Its a long shot. Most times they say no because my oncologist say they go by actual studies and case facts as to why they dont. I believe everybody should be given a chance at a second debulking because their are some cases that yes people have gone into remission after their second debulking even when their 1st didnt work not many but still. I feel we are worth a second chance whos to say it doesnt work. As everyone knows we are not statistics. We are strongminded people who deserves a second chance. Thats something ive been fighting for anyway.
But......
I've still been working with more designing flowers now for other walls. But ok so done with it now takes up so much time. i look outside snow almost 100 percent gone itching to go outside but of course not warm enough yet so.
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IT'S THURSDAY AGAIN; SPECIFICALLY THE 23RD OF FEBRUARY. WELCOME EVERYONE WHO'S HERE TO JOIN OUR WEEKLY CHAT.
Let's all spend a minute of respect for those in Syria and Turkey and those in the Ukraine and wherever tragedy has struck. It all makes me feel so lucky, despite this disease I fight day in and day out, for living in a country that is so peaceful and environmentally stable.....or at least we are comparatively.
A new Speaker Series offering to register for; Unpacking Palliative: The Myths and The Realities Wednesday, on March 8 at 4 p.m. PT / 7 p.m. ET. There is so much misunderstanding about palliative care and what it entails and offers that I think this one will be very well received.
Day by day I regain my strength....mostly to have the energy for all the followup appointments I'm now stuck with. Sheesh, started out with a GP and Gyne-oncologist and now have added a Cardiologist, Thrombosis speciaist, Nephrologist and Internest. But they're all workin diligently to get me back to my own version of normal and so far so good.Time to start our chat today so please sign in ot OVd, click on Teal Thusday and say helllo..........
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Thankyou for acknowledging the countries hit by tragic earthquakes this week and areas where war continues.My OvDialogue looks different a bit?I have COVID right now and it’s been a long week with symptoms. I am logging in only to say hello and hope all had good week.I really need sleep
Laura2 -
@Fearless_Moderator
Agreed.....there is so much going on elsewhere in the world that taking a pause is definitely in respect to others and sit our own silence as well.
Glad to hear you are slowly regaining strength. It does get to be a lot when you start adding in more doctors and coordinating all the appts as well. Plus....where does one rest in amongst all that?
So, we (my boys and myself) are having our own "snow day" today. It feels like old times when they used to go to school and the buses did not run due to inclement weather. Although we are all doing our own thing, it is nice to have their presence in the house.
Updates....I have been experiencing increased left flank pain, itchiness, some swelling in my legs, bladder spasming, slow urine flow and feet and fatigue. I had an appt with my Oncologist last week and bloodwork is normal as far as kidney function which is good. I gave a urine sample and do not have any results from that....but guess what? I am NOT pregnant! LOL I had an ultrasound yesterday and when they were looking at the left side it was sore and hurt. Funny enough results came in yesterday afternoon and there is nothing new to report and matches the latest CT scan as far as bladder, ureters and kidneys. This is good, I know and now brings me back to asking....Why then do I have this pain and these symptoms. My brain is working overtime on this and I don't see my Oncologist until Monday to discuss it all. No, it's not far away in reality but I am anxious to discuss all of it. The waiting game sucks! But wait I will.
Yesterday, I was able to attend my Hospice group as I have missed it for the last 2 wks. It was so nice to see my group and greet the new person that has joined us. It will take a couple of times to get to know the new person better but it will happen. I do love going and being able to 'free' in discussing lots of topics and feelings openly with other people going through the same thing. It is freeing and reassuring.
How is everyone else out there today?1 -
@ToughAsTeal
So sorry to hear that! You go rest and get better. Catch you next week.0 -
@ToughAsTeal
I am so sorry to hear, on top of everything else, you have Covid. I got at the hospital and was moved to a private room on an isolation floor for 10 days and put on that drug (Resto something) that helps mitigate symptoms. For me right to my lungs and I can only imagine the shape I would have been in had I not had all those vaxs beforehand. I do hope yu recover quickly gal.
Behind on all my emails so let me take this quick opportunity to congratulate you on your first grandchild. How exciting and yes, God is giviing out those gifts it seems. I assumed I'd never see a grandchild eithr and lo and behold my daughter in law is due in two weeks. It' will take a trip to Florida to see him (we know the sex) but I don't care how I feel, I intend to be there as soon as she's up to having visitors.
Go get some sleep and keep us posted on how you're doing. My own thoughts are with you often gal. 2
