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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@ToughAsTeal I will hold you in my mind and heart during my walks. We try to go to Hamilton Mountain brow, or the beach path or the Bayfront park to mix it up.1
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I don't believe there is any one way to do things. It is like you said, making the list and checking it off. Sometimes, it is you have done your part and are waiting on the completion end of things. Like for example, applying for Disabilty Tax Credit or CPP Disability. Once I had done my part, all you can do is wait so best to move on to something you can control.
I am in the process of finishing up loose ends from last year to get everything ready for the accountant. Plan on having my stuff done and then wait for the hubby and boys T4's to come in to send it off. I was self employed so I wrapped up my stuff last year and they only need Sept-Dec from me and my Medical stuff now.
I can say, check marks or line through something on your list is so energizing.
Like when I took a whole bunch of stuff that needed shredding to the dump and my Uncle helped me. They have a giant cross shredder there and saved me hours of work!2 -
Happy New Year everyone! Go Canada Go!!! I think we will all be glued to the television tonight! Tom and I have been to a number of World Junior Championships and the hockey is really good! We wanted to go this year but alas, it was not to be. I had a bit of a forced break from treatment over the holidays. My Dr was pretty sure that because of my rising CA125 it was growing in my peritoneum so I had an early CT just before Christmas. Good news is I am stable and better news is that the break was amazing! I felt like my old self over the holidays and enjoyed every minute! (could have done without the 24 hour power failure
). So Tuesday I was back on my regular treatment of weekly Taxol and Bi-weekly Avastin and am mentally and physically ready to take it on again. Feel great, just a bit of fatigue. My best friend of 25 years has rented a condo in Mexico for the month of February and yesterday I booked a flight to visit her for my "off treatment week". Just want some sunshine and warmth. She is the kind of friend that if I am having a crappy fatigue day I can just have it with no expectations and lots of support I am well known for my positivity and it took a bit of a hit in November and early December but I feel like it is back on track and I try and cherish each day as it comes. I am however done with cloudy days!! LOL! 1 -
@GloHo
Those all sound like positive ways to deal with your health and healthcare.
I am similar that I like to know the process and if we aren't doing the process, why and what is the new protocol.0 -
@mjmck21
I am sorry to hear that you are going through such a difficult time and your issues with the ca125 test. My oncologist that retired last year after 35 years, would always tell me it's not the number so much, but the direction it is going in.
I too am on the taxol/avastin regimen. Just completed my second treatment on Tuesday. My ca125 finally went down after the first treatment, after rising the last 5 times.0 -
I am so happy to have joined in today. And feel very less alone… in this grey day! Motivated to go conquer my manulife submissions next, then hoping to enjoy a visit from my cousin visiting from BC if she has time. Tomorrow is Orthodox Christmas Eve .. raised with Ukrainian traditions, I am not sure yet if I will do something on a lower scale (vs the traditional 12 course meal that starts when the first star is seen in the sky, if I recall!).Keep moving forward🌻🌻🌻2
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@Taita
Good for you! You go enjoy the warmth of that sun, laughter with a good friend and a change of scenery. Just make sure you have most of your stuff in a carry on in case your luggage is lost!
I, too, feel a bit more prepared for my appt next week and the prospect of looking at rechallenging the trial drug at a lower dose. Still not sure what I will do but am open to it where I was pretty closed off before about it.
I have a CT scan tonight.....9pm. So I will miss some of the game tonight. Canada has to pull their socks up and it should be a good game. Hopefully they aren't tired from last night and play well.2 -
@Strongwoman
Good grief! There is something to add to my list. I received notification to apply for CPP/OAS just before the holidays and had totally forgotten about it! Thanks for mentioning! Has anyone found a list online that covers some of these end of life "to do's"? It would be a great starting point...I will probably take a look when I start my list today.0 -
@ToughAsTeal
So glad you could join us. That would be quite the undertaking, a 12 course meal. Wow! Some good eats though I suspect.
Well, enjoy your visit and tackle things as you can. Some days, I don't do any of it. Just not in the mood but I always find something to do.0 -
@GloHo
I started a post about most of it including the links to the forms you need. I will have a look again and see where it is so you can look at it. It is one of the suggestions I made so that everyone has a place to go look at it instead of finding it in a thread here.1 -
@Strongwoman I followed up your previous link to anticipatory grief and I found it very helpful. Thank you for that. So working on this as well. I find it helpful to find engage with philosophers, theologians and others who can talk about these processes. I found Susan Sontag's concept of Two Kingdoms very helpful as well. The Kingdom of the Sick and the Kingdom of the Well as a way to connect with everyone around me who is well. (of course we all exist in both but our perception holds us apart) It's the distance between these two kingdoms that brings the feelings of isolation just at the time when I need the connection most, so working at trying to shorten the distance with close friends and it seems to be working. I also have Joan Didion waiting for me at the library.1
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Here it is ladies:
Disability Tax Credit---My accountant mentioned it to me and I printed off the forms and gave them to my family doctor to fill out. It is 18 pages long. I put on sticky notes anything that was applicable to a section for my doctor. That way when she called me, all we had to do was more or less "fill in the blanks" for her to be able to complete the form. I sent my complete package off last week and included anything that I had on file that my doctor did not include (like CT scans etc). So will wait to see what happens. There is also a check box that says "apply to previous years" which if applicable can be addressed should the CRA think so.
CPP Disability---I have recently looked into this as well. There are 2 Forms in each section. The one section is an "Application" and they urge you to fill this out and send it in even without the second part. The second part is "Medical Confirmation" form which would be completed by your family doctor, nurse or oncologist (there are other health care providers listed but those were the ones I remember). In each of those sections it is then divided into" Non-Terminal" and "Terminal". From what I have read Terminal is defined as an "imminent death within 6 months". When speaking with my Nurse Case Manager on my Palliative Team indicated that a Social Worker could assist in filling these out and also determining what else might be available to oneself. I am waiting until my next CT scan results before determining which one to fill out based on the results. Both of the sections are lengthy even for the doctor to fill out.
Life Insurance---My adjustor let me know after asking about my policy and MAID, that on my policy that if deemed palliative I was eligible to fill in a form to receive half of my policy. This is so people can enjoy more and stress less. My Oncologist filled it in for me and was a bit lengthy as well. I also found out that should I choose MAID that my policy is still in force.
Regarding equipment etc---Palliative Team has let me know that if applicable, they can get things to try out (I think on a trial basis) and if it is something that works out and is necessary can either be bought or rented. That is all I know on that front and have delved into it deeper.
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@Strongwoman
THANK YOU!0 -
Have a wonderful weekend everyone. I found today very inspirational and so appreciate everyone sharing the reality of our lives and the strategies and struggles we all deal or will deal with. Thank you!1
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@mjmck21
Your welcome and glad it helped.0 -
Well ladies, it is now at the 2pm marker and I must go and put away my groceries now.
I will watch and cheer Canada until my appt this evening.
For everyone, remember this is your safe space to chat so if you are having a terrible low day or an exciting day, this is your area to express those feelings without dealing with family.
Hang in there, a couple of more dreary days and then the sun is to come and shine down on us!2 -
@GloHo at first I was relieved they were not testing CA 125 because its just so high. Over 12,000 in early Dec so increased between that time and by the time they started treatment on Dec 23. It's just too upsetting. as was the CT - basically like a moss growing over most of my organs... I was glad of the break in all the tests but now that I am back in treatment and symptoms are subsiding I wonder how they will measure whether there is a real decrease in disease other than how I'm feeling. I doubt I will receive another CT because its taking weeks to get one now. Anyway I won't think about it until end of month when I see my oncologist again and I will pose this and other questions. Focusing on the pain free time I have now.1
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Thanks everyone. I have now put this forum in my calendar and will try to attend as often as I can. I really do enjoy being able to sound off on anything that is on my mind. Thanks for listening and for your support.1
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@mjmck21
I totally understand. I have actually taken a break from CA125 results as well. I started my chemo in December 2021 at over 8000 and ended in July 2022 at 52 with a CT that showed significant decrease of disease. I then started Zejula. My CA125 was tested every two weeks with increases each time (up to 451) and following a CT scan in November, discovered that the cancer had progressed and I was platinum-resistant. I have not had a CA125 test since the end of November. Now that I have started on this new regimen (Caelyx/Avastin), I will expect my CA125 to be tested on the 28-day cycle.
I have been known to push for a CA125. Even if they don't want to do it, I would have them send a requisition to life labs and pay for it myself (just to satisfy my own curiosity!). I do know that they will not do it more often than every 28 days - which makes sense. It's my body and I am the one enduring treatment and feeling the symptoms and/or side effects. The test results, good or bad, help me focus on where I am at and what the next steps are...either wait because the drugs are working or formulate a plan for options for next steps. I have discovered that advocating for myself is a necessity. I, personally, need to know. I become an emotional wreck if I feel like things are getting out of control or are unknown. Having said all that, I am much better than I used to be (believe it or not!). I have also come to realize how important all of the blood work results are as a whole and do not base my decisions/direction on just the one test. The other thing is that I always find out when my next CT will be...I knew in December that my next CT is scheduled for the end of February. It just helps to know how and when they are going to determine my progress or lack thereof.2 -
Just as a side...I actually just began my list. Thanks to everone for the push I needed!1
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Weclome ladies. It's 1pm on Thursday June 12 and I'm looking forward to chatting with anyone who'd like to join the group todayl
No big news to update you on. I try to keep the Discussion thread that lists events up to date so it should be pretty accurate. Nothing else other than I have a miserable cold right now. Sp let's get started/ Who's with us today....what's on your mind?
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@Fearless_Moderator
Sorry to hear you have a cold.
I have a few things I'd like to mention.
First, I had my port installed on Monday. All went well and I seem to be healing quite well. Just sore to the touch right now.
However, I have broken out in bumps (hives?) all over my body. They are not red and only the ones on my back are itchy. Saw Dr yesterday and she thinks it looks like a drug allergy. Problem is...was it from something they gave me during my port placement or is it a reaction to Caelyx (infused Dec 20) or Avastin (infused Dec 20 & Jan 4).
I am also afraid that I may be getting the hand issues - sore to touch - just tips of fingers, not on palms yet. My feet are okay right now.
Guess I will have to wait to see what happens after my next Caelyx+Avastin infusion next week.
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I was looking for the Cancer Circle event on Tuesday...was it cancelled? Is that the one that is once a month? Will there be one next month?0
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Hi @GloHo Thanks for joining us today. I was just reading your last comment regarding clinical trials. Having been on two trials I think I can answer most of your questions.
As for the rash, it's likely Caelyx. The most common side effects i hear from gals on the Caelyx/Avastin protocol (including me) are the hands and foot sores or rashes than can appear anywhere and everywhere on the body. I was fortunate and never got either so not sure what the remedy is or whether you have ro grin and bear. Certainly unctuous creams help keep the sores away. Perhaps overall moisturizing might help.
Glad to hear you got a port. i've had mine for over two years now. It's sure a joy not having to have an IV all the time. At my cancer centre there is a large group of nurses trained on port use so I get all my blood draws n the chemo room and of course traatment. the only time I've have togo for an IV has been in emerg where they don't always have a qualifed nurse and for the influsing of dye for scans . Apparently the pressure under which the dye is fed is too high or the port to accept, at least the one's we use in Kingston.
Good luck with your Caelyx/Avastin infusion. It worked really well at keeping me stabilized for 13 cycles.1 -
Happy Thursday! Other than this terribly dreary weather, all is going along quite smoothly. Resumed my treatments after the break and the side effects are coming back but I knew they would and somehow knowing that I am still stable makes them much more tolerable. Good news front...... While I only had a couple of treatments off, it seems like the hair on my head decided to start going again! LOL!! I am sure it will be short lived and it certainly isn't much but I take it as a sign of life! To top that off, I didn't realize my Dr. had taken another CA125 test on Dec 30 just before I started back to treatment (she had taken one two weeks earlier which was 252 up from 200 hence the early CT). I got a notification that I had a new test result and low and behold my CA125 was 230 (before I started back in treatment). While it isn't earth shattering it is going in the right direction for now and I will take it! 0
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@Fearless_Moderator
I was trying to ward off potential side effects by pre-using the creams and mouthwash...alas it didn't work! Or, the port procedure triggered something. Just really weird timing. I tried Benadryl yesterday, it got rid of the itch but I slept for four hours during the day and then couldn't sleep when I went to bed. I also did not like the groggy feeling I had after I woke up from my "nap." So, will try Benadryl before I go to bed tonight, if nothing else, it should help me sleep.
I have a "new" power port that is supposed to be good for CT injections. We'll see.
Unfortunately, I go to two different centres...one for chemo and one for Dr. I usually get my blood done right before Dr appointment and they don't have a nurse on staff to do the port draw. So, I will have to endure vein draws whenever I see the Dr.0 -
@Fearless_Moderator
I noticed in our first post that you said "June 12th" is that because you are hoping to bring the Sun Gods out of hiding?
I am all for it! Glad you had a great visit with your son and the post Christmas cold seems to be a thing right now. Hopefully these viruses are slowing down and we return to the common cold. Annoying thought it is!
I have decided to embrace travel and am looking forward to visiting a friends condo in Mexico for a week in February and then off to London and Cyprus March 9th to make more family memories. The Italy trip can't be beaten but we will no doubt come a close second!!0
