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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@Strongwoman thank you!!0
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@Strongwoman. I have not been outside for three weeks. My puffer coat hangs on the hall closet door, looking very new and puffy. And lonely. Tomorrow my friend is hosting a tea party at her house, and I will wear it to that. Now I have bought it, I see that everyone is wearing one, including our lovely premier, David Eby, who my Mum would have called a long string of paralysed pump water. He is about 6’ 6”.Our Xmas tree has finally come down, much to the mogs’ great disappointment. And the snow has gone. We are back to wet coast weather for the next three weeks at least. But the temps will be double digits. I can handle that. My insides are not much better, I am trying to manage the pain but its challenging. I want it to go away, and perhaps it will. In the meantime I am distracting myself with facebook, the TV, Coronation Street, Call the Midwife, and writing emails to my friends in NYC, Glasgow, and Florida.I have a poem for Teal Thursday. Not sure if its funny, but it is appropriate to this time of year. Keep on Keeping on….1
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Hi Everyone… Has anyone tried Earth’s Mushrooms five powder blend? It is made in Ontario and has Lion’s Mane and Turkey Tail in it. The makers say it is pure with no additives. It has good reviews, but they can be faked, can’t they?0
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Ohhh @Hooodith That is a good question. Leave it with me and I will see if I can find anything out about that. If I can, I will share it for sure. I am so thankful that I found my turkey tail mushrooms. Would you like a picture of them so that you can look for them in your area in case there are some you can forage for yourself? All you do when you find them is clean them off with a pastry brush or old toothbrush, put them on a baking sheet, preheat oven to 300F, bake until when you go to break them, they make a snapping sound. These will then be ready and will keep for a long time.
To make the tea:
With scissors cut the mushroom into smaller pieces to create more surface area
Simmer the cut mushrooms in water for 20-30 mins....voila...tea.
Not earthy tasting and almost has a sweet taste to the tea
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@Hooodith I found this article that might help you in deciding if a certain brand is what it says it is. Hope this helps some.
https://learn.freshcap.com/tips/choosing-a-mushroom-supplement-heres-4-things-to-know/
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@Strongwoman…thank you so much for all this info. But I have to say that the article was beyond my pay grade. I guess I want things to be too easy.
We had a great tea party today, and I am so grateful for these friends who gather together to keep friendship alive. We are all a bit hermit- like, but when we meet and sip from fine china and nibble on our petits fours, we find so much of interest to chat about and explore.I also wore my coat which I have now named The Magic Dragon. Get it?
Big hugs to everyone…0 -
@Hooodith @Strongwoman
Hi. I have also done some research on this subject.Paul Stamets = Marx Mushrooms (Ontario only)/Host Defense
Marx has Turkey Tail Mushroom/Green Tea pre-mixed tea bags. But, you can make your own tea/drink using an extract or powder - just look up recipes online.
Purica in BC does organic mushrooms - worth checking out.Hope this helps.0 -
@Hooodith Your tea party with friends and your Magic Dragon sound like a wonderful day indeed! So aptly named, I think.
As for the article, yes it is a bit wordy. I believe it gives you things to look for when you are looking at real vs fake. I will see if I can take a look at it today and simplify it for you.
@GloHo Thanks for the info and hope it is useful to many. So hard to know these days, isn't it? So hard to believe that we even have to think of it being fake to begin with leaves one feeling so upset with humanity as a whole. Like who would want to harm innocent individuals to make a profit? Guess they have nothing else to do with their time as I have too much to do to occupy my time to stop and think of things like that. Bottom line....I like the life I am leading.
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@Strongwoman. I think that capitalism pollutes everything and everybody. It is the default program now in our cortical brains, where community well-being and right action used to be. One has to actively work against it, and guard against it. Its like being under seige. We are pensioners and have to be so careful that what we buy, especially on line, is what we are told it is. Its produced a nation of sceptics. Those little high street shops couldn’t fool you, because their wares were right there to be checked for colour, and quality. And tried on for size. And if they did try to fool you, they soon lost all their customers and had to leave town. I bought the Magic Dragon in a real store with mirrors, and a long history in Nanaimo for good clothing. I spent more money than I would have on line but it was worth it for peace of mind.
So happy to hear you like the life you are leading. I am off to the clinic today to talk to my NP about my bladder problem, the only thing stopping me from liking mine.Couldn’t find the poem.
Happy Teal Thursday, all you amazing Teal Sisters.0 -
@GloHo. @Strongwoman Both of you, Thank you so much for your information. It is very helpful.0
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Good Afternoon Ladies! Who here is tired of the dreary weather with no sun? I am! So, in light of that and where our heads and minds have been lately, I have found something that I think should help us all and I know for sure I will use as a tool going forward.
This is from a Pinterest post by tessrenecoaching:
Nine things to tell yourself when you are in a thought spiral:
1. All thoughts are temporary.
2. This is just a thought, not the truth.
3. All humans have unwanted thoughts.
4. This thought can't harm me unless I allow it to.
5. I am not my thoughts.
6. I don't control this thought, but I can choose my next thought.
7. What is it I am trying to prevent, protect or avoid right now?
8. Am I asking myself an unanswerable question?
9. What I need right now that I will give to myself is___.
I thought it was fitting especially as our heads take us places we really don't want them to. It may allow one to figure it out or help to figure out. Of course, us as a group are always here....anytime.
I also found this one that has to do with Rest/Meditation and thought it was fitting for today as well:
Sensory rest-- is silent walks. Soothing scents. Loose clothing. Cosy socks. Deep pleasure
Spiritual rest-- is meditation. Prayer. Energy healing. Full moon rituals
Creative rest-- is drawing. Pompom making. Cake decorating. Reading fantasy novels. Trying a new recipe.
Playful rest-- is anything fun and unproductive. Watching a romcom. Playing a board game. Doing a puzzle. Building fort.
So, Teal sisters......what do you do? How do you find your individual rest? I thought the full moon rituals was right up @Hooodith alley and so fitting. Love hearing all about what you do and how you view things. I think because it is an interest of mine as well. Share my friends and let's pull each other out of the dull weather and thoughts that may be occurring. It's what this forum is for. So, take the hand......reach out and take it, find comfort in the warmth and love you feel from it, savour it and pass it along to a fellow friend. One by one we will lift each other up and stay with those we need to stay with and along we go on our journeys beside one another in spirit and mind.
As the quote from Percy Jackson and the Olympians goes: "Hold fast, Perseus. Brave the storm that was made to break us, for we are unbreakable as long as we have each other. When you are ready to hear what the Gods have in store for you, they will tell you. Hold on to that. It's a mighty instrument."
Thank you Disney and allowing us to dream, wish, think beyond and take us away from our every day.
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Hi everyone. Nothing really new for me. Continuing weekly Paclitaxel. My blood counts are good for the most part; however, noticed that my hemoglobin has been trending down and nearing the anemia warning number. I am waiting to hear back from my Onc’s nurse about whether or not I should start taking a supplement (iron?, B12?)…trying to be proactive. I have one more treatment before my next appt when I will find out what’s happening with my CA125 which has been trending up. I think if it continues to go up slowly, I will continue on the Paclitaxel. I also have a CT in late Feb…so that will tell us a lot. My appetite is good, my fatigue’s not too bad; however, I find that I can fall asleep, at any time, very easily…even though I don’t feel tired…weird. Perhaps it’s my body working harder to tackle the cancer.0
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@GloHo How are you finding being on the weekly Paclitaxel? I know that is something that may be in my future, possibly. Does it hit the body instantly or gradually? I, too, find if I am sitting that I could nod off very easily and find myself struggling to keep myself awake at times.
Could be your body working hard to adjust to what the Paclitaxel is doing to your body and how it responds as well over time?
Rest when you can and look forward to your updates.0 -
@Strongwoman
I am getting Paclitaxel every week - no break. I think since each dose in a cycle is 1/3 dose, it is not as drastic on the body. I can’t even say that it “hits” me at all. I just completed treatment #10 (Cycle 4, Day 1)…the only cumulative physical thing may be a tired feeling in legs, so find I am pacing myself to compensate for that. It’s not affecting my neutrophils or platelets that I was concerned about before I started treatment. Am checking about the hemoglobin decrease. It is affecting some other blood counts but I have to research what the heck they are before I follow up with my Onc. No concern from my care team has been expressed about these counts…but for peace of mind I am going to do due diligence. My hair has been gradually thinning…evenly across my scalp…so not clumpy fallout and I don’t need a head cover yet. So…overall, not bad. 😁0 -
Hello Sisters. I just came from an appointment with my onc. Just my usual pre chemo check. Cycle 5 is on Monday.@Strongwoman and @GloHo I also find myself nodding off when sitting. I have discovered the beauty of naps. I really don’t need to be doing something every moment of the day. I need to get busy and clean the bathroom but then.. nap time!!1
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@JoanEG @GloHo @babs272
Hello!!! I had to leave early as my son had an asthma test at the hospital. Thankfully that is the last of any appts for him. I get my Thursdays back!! YAY!!
@GloHo Thanks for the info and how you feel having it weekly/on cycle. It is good to know ahead of time what that might look like for me. I think they will switch me from Letrozole to Tamoxifen first. I know it will be a hit to my system and do expect side effects with it,
@JoanEG I will assume all is still well with surgery...any date yet? Naps are great.....first I have to get 2 children back to work so I have the house back to myself during the daytime. They don't bother me when they are here but there is a different 'feel' to the house when they are here.
@babs272 Well here you are. You have not been on in awhile...glad to have you back. How have you been feeling and where are you at with everything?0 -
@Strongwoman still no surgery date. I had my nap and then cleaned the bathroom now I’m back on the couch watching “Beef” on Netflix.0
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@JoanEG @melissa I don't think I have checked that one out yet. With my oldest son, we watch One Tree Hill and the youngest and I watch Lucifer. All three of us watch Percy Jackson and the Olympians. On my own I watch The Crown, movies of various eras, Virgin River etc
Also escape into reading. Currently am reading Ghost Music. What is everyone reading these days? Went to the thrift store and picked up some books today. Score! And 1 game for the family. Matching game for the neighbour's grandson $3 that is like matching sleeping diggers etc. I really love thrifting. ❤️0 -
@Strongwoman “Beef” is kind of a dark comedy but good. I am currently read Traitor’s Gate by Jeffrey Archer it’s a political thriller. I use a ereader that syncs with my phone and my iPad. That means I always have my book with me!0
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@JoanEG I have an old tablet that I was able to download over 100 books onto years back. It's what I use to go away with or ask them to bring to me in hospital. So many choices and less to have with.
Jeffery Archer is he the same author that wrote The Bone Collector is is that Jeffery Deaver?
I will check BEEF out and see what I think.0 -
@Strongwoman Jeffery Deaver wrote The Bone Collector. Let me know what you think of Beef.0
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A clinical trial about clinical trials 😁
If you are considering participating in a clinical trial and want an opportunity to input your experience - check this out…
Appraising Medical Trial Experiences of Ovarian Cancer Patients
NCT05801796
NOTE: Not yet recruiting - expected start date is listed as April 20240 -
@Strongwoman…I am reading all the Kate Atkinson books that I haven’t yet read. She is a fascinating storyteller. I also have been reading my pile of Rosamunde Pilcher, which are very light reading. But I love the happy endings. And Joanna Trollope but not always happy endings there. On Kindle I have been reading books on spirituality. One-is called “Grounded”, by Diana Butler Bass. Then there is “Stitches” by Anne Lamott, one of my favourite writers. And a book of poetry by Ruth Stone. I tend to stick to women authors these days.
We have been promised five or more days of pouring rain on the south coast of BC, but not the terrible atmospheric river we had in 2021 that flooded and washed out farmland and highways.I was interrupted and never sent this. I will now.0 -
@Hooodith Nice! I plan on starting a poetry book I won on Goodreads entitled "After That" by Lorna Crozier soon. I have some of Kate Atkinson's books and do thoroughly enjoy her writing as well. Have you read Barbara Erskine? The first book to start with would be Lady of Hay and there are two more in the trilogy. You may quite enjoy her writing.
No worries, I have done that many times. Started something and went back to look and haven't sent it.
It sounds like you are in good spirits and happy to see that. Soak it all in....even the wet and dreary as sometimes it pulls something out of us we never knew was sitting there. 0 -
Good Afternoon Ladies on the 1st day of February. Tomorrow is the Groundhog Day that is celebrated or known mainly in the USA and Canada not elsewhere in the world. Who will see what? Any guesses???
When I was listening to the news this morning and getting a recap, they were saying that here in Ontario for the month of January, we had 5 days of sunshine only. Not enough.....definitely not enough. Starting tomorrow afternoon we are to heading into 7 days of sunshine......I think we will all be shocked and not know what to do or be so deliriously happy we won't know what to do with ourselves!
I found a poem today for all of us...to reflect on and may cause one to stop and help to lift you up. Hope you like it.
"Life isn't always onward and upward.
Sometimes you evolve, sometimes you devolve.
Sometimes you get the life sucked out of you, and other
times you breathe the life back in. There are times of shutting
down and times of opening up. There are times the walls
go up and then times they come right back down again.
Wherever you are right now, I hope you choose to act out
of love, even if you didn't yesterday. Because love, along
with hope, faith, and courage, will always get you
out of the pits, unstuck, and back on your
way to brighter days.....eventually."
by Doe Zantamata
Felt this was something that "fit" for me today with the week I have had with emotional ups and downs. Some to do with this eating and focus on BM's and other part is the LL's attempting to stir things again that I will not be part of but all of it brings back fear and dark times. All of it pushing me forward to not bring or invite it back into my life. Boundaries are up and time to focus on the important things......myself, this group and any way I can give back to anyone struggling out there......those are things dear to my heart.
Where are you at ladies today? Emotionally? Physically? Mentally? We begin a new month.....what will you do with it?
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Good morning @Strongwoman and everyone. I have had quite a week. My recent bloodwork showed my CA125 down to 8. I had round 5 of chemo on Monday and I’m feeling so exhausted. I had to sit and rest after changing the sheets on my bed just now, ugh. The big news is I am booked for surgery Feb 12th but no time yet. If I don’t hear from surgeon by Feb 7th I have to call them. In the meantime Feb 2 a call with a pharmacy tech, Feb 5 call with nurse then one with anesthesiologist. Feb 9 chest X-ray, ECG and bloodwork! Yikes 😳 They will schedule my final round of chemo after that.0
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Oh I also have a new great grandbaby boy! He was born Jan. 29th at 11:48 pm. weighing in at 8 lbs 3 oz.
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@Strongwoman
Thanks for sharing the poem. So true of the ups and downs we all have.@JoanEG
Congratulations on the grandbaby! He’s precious!So glad to hear your numbers are down and surgery is in sight. You must be feeling some relief that things are moving in such a positive direction.For me…I followed up with my Onc about my concern regarding my hemoglobin count dropping. I thought she might prescribe a supplement or two, but she is going to do blood tests at my appt on Monday to see if we can figure out what’s causing it first. I will also get my CA125 result on Monday which will determine whether or not I continue on weekly Paclitaxel or move onto the next standard of care treatment - Gemcitabine.The chemo oncologist suggested it might be time for me to talk to my GP about getting off my high blood pressure meds. I will ask my Onc…I would love to stop them so I hope she’s in agreement.1
