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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Hello @flory ~ I should have said that I was on Zejula for 6 months; I am not taking it now as it stopped working/ didn’t keep the disease from progressing. I took it as a maintenance drug after my second reoccurrence. I tolerated it pretty well without major side effects. The initial dose of 200 mg was reduced to 100 mg as my white blood cells were not keeping up with the drug. I am currently facing 4th reoccurrence and taking caylex/avastin combo.
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@Keepcalmandbreath thanks for your reply. It’s good to know you tolerated Zejula. I already have high blood pressure so I’m a bit worried about taking it. I hope you respond well to your current treatment! Wishing you the best possible outcome.0
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Hello again, @flory - I do remember being concerned about high blood pressure as it was noted as one of the main side effects. However, my oncologist said at that time that it could be dealt with the medication. In fact, I am currently experiencing a high blood pressure as a side effect of Avastin and am taking a medication to keep it under control.1
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@Keepcalmandbreath i have heard that Avastin raises blood pressure too! I think I will need additional blood pressure meds when I’m on Zejula.0
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Hello ALL!
I want you to know that I left today's chat on purpose (meaning not starting it). This is a time of tear that can be filled with 'stuff' both good and bad and chocked full of emotions and for a lot, fatigue.
Take care and be kind to yourselves.
I am always here should anyone need anything. One can send a private message if they prefer that. Not one of you are alone today or any day. I and others are Gere with you to go along your journey by your side.
Will chat and resume per normal in the New Year. For today, know I sit here with you today no matter what that looks like and how emotional it may be. I will hold space for anyone there. For others, enjoy what you are surrounded by be that family or friends and all it entails.
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Thank you @Strongwoman, for all your support and everything that you do for all of us in this group.Wishing you and our teal sisters, love, strength and happiness over this holiday season and in the year ahead! 🤗❤️3
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Thank you @Strongwoman and @Tinazzie. I’m taking today to rest. It has been a very busy few days.1
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And you are not alone either, Strongwoman. You’ve given so much to all of us. Today is your turn to feel our support, and while that might not be comfortable for you, we are here, arms around your shoulders, giving the strength that you so freely give others. A pillow, a hot cup of tea, and to sit with you quietly through your tears.3
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Thank you @HoldingOn!
To All......we are almost finished 2023.....rest, enjoy, reflect, and I will chat with you in 2024. Have an evening as you wish it to be and where you sit right now. Not everything has to be about celebrating...it can be saying a fond farewell to the year that will be passing and welcoming a new beginning or journey.
Take care 0 -
Wishing all my Teal sisters a peaceful end to 2023. I will spend the evening resting and watching Dick Clark’s Rockin’ Eve. Since I am on the west coast I can celebrate at 9 pm my time and go to bed early. I had a very late night last night after a gathering for cards with my siblings and an early night is all I will celebrate tonight! (See picture of me and my siblings. Also my 2 dogs who are also siblings). I have an appointment with mon onc. tomorrow morning at 9:30 am. New Year’s Day no less!
@Strongwoman thank you for welcoming me to this community the knowledge and support I have found here have been invaluable.
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Not to use the cliche "you look great" @JoanEG you do look well in the pic and happy. So nice to be surrounded with loved ones and the puppers, too!
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@Strongwoman thank you 🥰0
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Happy New Year everybody! Lovely picture, @JoanEG. My chemo got postponed for a week, WBC count too low. So try again this Wednesday. I got a nice week of extra recovery time. Hoping this chemo is the last one. My CA 125 is down to 200, so it very well could be remission time. My toes and fingers and other dangly things are all crossed. I am fed up with chemo. I hope everyone had a good midwinter festival and saw family and other loved ones and ate delicious food…I love that the planet is turning towards the sun again.2
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Happy New year! @Hooodith - do you find you do feel better when chemo is postponed or skipped? I am thinking of asking my oncologist if I can do /Taxol 3 times a month instead of weekly (without causing harm).0
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@Hooodith Frustrated and exhausted is what I hear in your post. I will cross my everything as well for you in hopes that it means you get a much needed break from chemo. Are you able to ask for a break or pause in treatment should any more be required? Has that thought crossed your mind (I imagine it has but best to ask)? There are times our journeys seem extra long and hard and feel that you have been on one of those.
Thankful you were able to celebrate the midwinter festival and had time with family and friends. Those are the things that help to 'pick us up' and help us through the more difficult times. I, too am looking forward to the change in the astrological air and am definitely going to welcome it!!!1 -
@BellaDonna1959 That sounds like a good conversation to have with your Oncologist so that you can weigh the pros and cons of whichever way you choose to go. Let us know how you make out!0
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@BellaDonna1959. I feel better I think because I am farther away from the chemo, and maybe it isn’t in my system anymore and my body is beginning to regrow the cells it has lost. .There might be a psychological boost there too, but not much of one since I know that I still have to have it in a week’s time. And yes, @Strongwoman, I am frustrated being so close to the end, but not there yet, and not sure either, if it is the end. But I think I will make that decision anyway, since I was NED after three chemos but mon onc told me I had to continue to the bitter end.0
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Welcome Ladies to our first edition of Teal Thursdays of 2024!
The Holidays can bring about so many events, emotions and physical demands of ourselves and our bodies. I thought this would be a good time to discuss some topics with some tips on resets or ways to propel forward.
Today I am starting with a poem.
"This is my wish for you:
Comfort on difficult days,
smiles when sadness intrudes,
rainbows to follow the clouds,
laughter to kiss your lips,
sunsets to warm your heart,
hugs when spirits say,
beauty for your eyes to see,
friendships to brighten your being,
faith so that you can believe,
confidence for when you doubt,
courage to know yourself,
patience to accept the truth,
Love to complete your life."
---Ralph Waldo Emerson
1803-1882
I found this and thought this fitting for us ALL. I feel there is something in there that we would be able to relate to and that it may resonate with us.
As we can be heading into some dark days (we all know they have been occurring lately too) I am going to do my best to see what we can do to 'lift each other up' and 'bring some light to our worlds'
I found another source that provides some AFFIRMATIONS for the different days of the week. Here they are:
Monday--I have everything I need to make this a great week.
Tuesday--Positivity and prosperity are flowing into my life today.
Thursday--I am learning from my mistakes and becoming better every day.
Friday--I am proud of myself for every little thing I achieved.
Saturday--I can take a break and rest without feeling guilty.
Sunday--I am refreshed and ready for new challenges.
How do those sit with you? Do you think they may be helpful in getting you through your week? I feel like they will and plan on looking at them to get me through this month anyways.
Here is some food for thought to get us through our months......
-lunch with a friend
-24 hrs no social media
-1 day outdoors
-1 day trying something new
-1 special bucket list item (with or without a loved one)
-1 breakfast meetup with friends/family
-1 movie & dinner or movie then coffee with friends/family
-1 day of being with others
-1 day completely to yourself
I have some ideas for journal prompts and will share those next week when I start Teal Thursday.
So, wherever you are and whatever you are doing, let us know how YOU are truly doing and if there is anything we can do to help you, 'lift you up' or sit and be here for you while you vent or lastly share some good thoughts and memories. We will not all be on the same page ever so whatever that looks like for you IS the right thing today.
I am here and waiting for anyone who is out there........
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LOL looks like I missed Wed in there so here it is for the affirmations:
Wednesday--I am strong and powerful. I am beautiful inside and out1 -
Hello ladies,
@Strongwoman I love your idea of daily positive affirmations thank you for sharing this idea. As well, the list of things to do, I always look for excuses to participate in an activity or even just going out to eat.
I myself have a few post it's on my fridge as positive affirmations reminders. One I will share is " the chemo will work& I am not platinum resistant" I point to the post it like a crazy person telling cancer off and putting it in its place : )
It gives me a little boost during the moment and helps to remind myself that while I am not control of everything I do possess control over some aspects of my life.1 -
Ladies, I decided two weeks ago to stop chemo. I have never been NED and was almost immediately platinum resistant and so since my original surgery Mar 2020 I have been on nonstop chemo. While it brought my CA125 down by 70 percent, my body is rejecting it and I want another couple of months of quality of life. During that almost four years of chemo we travelled with our family to Italy for 3 weeks, London, Cyprus, Portugal, Disney in August and had so many wonderful family times and adventures. My doctors got me through a fabulous Christmas and New Year and with Home Care palliative support I feel quite good and am still reasonably independent.
I am blessed to have an amazing family and all the support anyone could want, but it is time. Things changed quickly. But after 7 lines including a great clinical trial it is time. It was always going to be thus, it was just a question of when. 66 is way to young in my mind but the memories will live on. I am at peace.
Stay well my friends. Your support has been immeasurable. I continue to send all good thoughts and strong positive vibes to all of my Teal Sisters as we make our way through our various journeys. 💪. Love Kim
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@Taita Thank you for all you have done and for sharing this recent decision in your life. It is a decision that does not come lightly and I am sure had a lot of thought behind it. I respect your decision and for choosing quality of life. You have done many trips in which you shared with us all and how amazing for yourself and your family.
If you mind sharing a bit more, what does it look like you from here on out? Do you have nursing coming in daily? Are you wanting to stay at home, go to Hospice? So many things. We had a lady in our Palliative Day Group that was very adamant and vocal about wanting MAID and is now in hospital and is looking at moving to Hospice or a long term care facility. Whatever your decision is, it is your individual one. I do hope you may hop on from time to time if you can.
Thank you for all the advocating you have done for OCC in general. You are an amazing person, Kim. 1 -
@ Strongwoman thank you for your kind words. I have always felt a strong community with OCC and I think that is a big strength we have.I intend to go to Hospice. I have Home Care once or twice a week depending on my need to drain my ascites. I also have a sub-port in to administer anti nausea meds every six hours which I do myself.Just before Christmas after my two blood transfusions my palliative doc felt two months. I think I might have an extra one in my back pocket now. 😁. My doc is on text and phone with me and always available 24/7. She makes house calls when I need them. So lucky.My husband had his hip replaced yesterday and is still in hospital and hopefully home today. Our elevator in our condo is still not fixed (supposed to start Monday) and so a friend and switched condos with us as she has an elevator. My oldest daughter and her wife are here with us and don’t know how we would have done all of this without them. Our youngest daughter makes us meals and helps with the administrative part of my life that has to get organized. So as always, a lot going on. We will get through it. I will participate as long as I can and am happy to answer any questions people may have. We all learn from each other.2
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@Taita Thank you for being so open with us all. I have a question for you. Did you or do you have constant abdominal pain either before or after the ascites started? I am experiencing abdominal pain daily since this last partial obstruction and much more fatigued than I was. I can't find any reading material for this portion of our journey and anything that you can assist with, I would appreciate it.
I, too, plan on going to Hospice when it is time. So kind and generous that your friends were able to switch condos with you. Wonderful that your daughter and her partner are able to assist with meals and administrative end of things. I think I have most of my administrative stuff done but not sure. I did get a booklet from the funeral home and have done my best to write in things I want to have done and what I want. I am already on CPP Disability so that is done and I was self employed so all that is wrapped up for myself. Anything else that is administrative that I may have missed???0 -
Hello everyone. Happy Teal Thursday. I am trying for the second time to type in a poem I wrote. I got halfway down, pressed the wrong button and it completely disappeared! Very frustrating, but I had chemo yesterday so maybe my I pad has got chemo brain but it is my last one according to everyone except mon onc. I have a CT scan tomorrow which will hopefully show NED, which it did three chemos ago, so even if mumblelips thinks otherwise and it shows no great big tumour somewhere, I am ending this cycle.Its a nice sunny day here, and I am on Dex, and yesterday I bought myself a long black puffer coat with a detachable furry hood. It was half price. So today we are going to break it in with a walk to the clifftop and a waterproof sit down on the memorial bench and look out over the beautiful Salish sea. It is part of my decision to walk regularly through these cold winter months and hopefully prolong the remission.This poem is because at this time of year we women tend to jump on diet wagons, and its a public health warning about where that can lead us. I hope it brings a smile to your facesThe Paleo Diet
My friend, who used to be quite plump
And used to have a dowager’s hump,
Who wouldn’t run and couldn’t jump,
Has gotten very thin.
She gets up early every morn
And runs ten miles before the dawn,
Her fatty bits have turned to brawn,
She’s lost her double chin.
And when I quizzed her, on the quiet,
She said she’s on the paleo diet,
And then suggested I should try it,
(I can’t imagine why.)
She eats what cavemen ate for food,
The stuff they gnawed and chomped and chewed,
With cat- tail roots and berries stewed,
Down in the Olduvai.
Or eggs they found, a royal treat,
And lots of lovely mammoth meat.
But nothing white and nothing sweet,
No ice-cream, cake or pie.
And now she fishes, traps and hunts.
Mostly she speaks in squeaks and grunts.
She’s weaving cedar clothes and once
I spied her knapping flint.
She seems at peace, though hard to reach
In her small cave down Whalebone Beach,
And , though I’m loathe to warn or preach,
Feel I must give this hint.
No aurochs roam our valleys now,
In place of them the placid cow.
The grassy steppes are under plough,
The new modus vivendi.
Those mammoths they are dead and gone
Beneath the ground they trampled on.
Be careful what you munch upon,
Especially if its trendy.
Copyright 2023 Judith Heather2 -
@Hooodith You have yourself another WINNER! Love it! You are very talented at this. Thank you for sharing it. I also commend you on your definitive choice on where you are wanting your journey to go and that you are ready to stand up for yourself should the need come. You have had quite the journey this past year. I wish for you to enjoy your break from treatment, your daily walks and hopefully some more poems. Thank you for sharing! 0
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@Strongwoman
Your post is very thoughtful. It is sometimes difficult to keep the positives at the forefront of our minds and having these affirmations will certainly help.Have you heard back on the trial? How was your CA125 results (sans turkey tail)? How did the results for your kidneys go? I know you may have a difficult decision in that regard and was just wondering how you are with things.Thanks for your continued support and encouragement to all of us. Don’t forget…we are here for you, too. 🩵1 -
@GloHo Thank you. Yes it is difficult to stay positive some days.
My CA 125 level in November jumped 44 points and for December they jumped another 48 points. So they are trending higher. I have had 2 ileus (partial obstructions) within weeks of the other. I feel abdominal pain daily and on scale of 1-10, most days sits at 6 and can get high as 9 or 10. I feel bloated and generally unwell. Energy has definitely decreased. So currently I wait and manage with my meds and food vest I can at home.
As for the trial, PMH called and I go on Kan 15th for a consultation. I am not sure whether I will join or not. Depends on quality of life and expected outcomes. Luckily enough, I see my Med Onc that sake week so will be able to discuss any outcomes/findings from PMH.
I have a feeling things aren't headed in a good direction or I should be feeling way better by now. I am quite uncomfortable daily.
So that is me. Anyone have any thoughts, tips or tricks....I am open!1 -
@Taita
Thank you for sharing your decision. You are a remarkable woman. Your sharing has helped me immensely at this stage of my journey. So glad you were able to do the condo switch with friends and that your daughter + wife and youngest daughter are with you to handle the daily needs. Will come in handy when hubby gets home after surgery, too!! Wonderful support!!1
