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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I have not been able to find a good grove since chemo… the balancing act of restorolax, senekot, lots of fluids etc. Am enjoying post chemo acne breakout. Ya that’s fun🤦♀️I treated myself to having last years and this years walk of Hope tshirts altered slightly to be a bit lower just a bit at neck line. And the one from last year the sleeves taken up a bit. Glad I did it, but kicking myself for not paying closer attention in grade 7 home ec0
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@ToughAsTeal LOL 121 days until he's on his way again. I think we said the 18th of December for his return or, at least, our next reunion. We're still looking at options....the 33 year tradition of Christmas here...or start a new tradition of either travelling to him or all three of us meeting up in some sunny local away from the brutal Canadian winter. The most important though is that we together again.
I too would love to see an example of @gaylestorm art so would welcome her posting a picture if she's comfortable sharing. I really envy those with some artistic talents....a definitive lacking in my skill base I'm afraid. My husband is the creative genius in our family.
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A huge thank you to Elisabeth Baugh for all her work at OVC and best wishes in retirement!0
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@ToughAsTeal and I"ve continued with the same problems myself post chemo. Although do think I've finally found a bit of a grove with my bowel function. 3 Senekot every night, increasing to 4 when the need arises. And lots of fluids, but I' ve always been a thirsty type so consuming water, juice, pop, tea constantly is never a problem. As for the acne, for the first time in five years I started noticing bumps breaking out on my face about a week after chemo would finish and last about a week and then just disappear. It seems to be gone now that I'm on a chemo hiatus but I suppose another effect I should expect down the road when chemo kicks in a bit.
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Hi @Elsie13 nice to see you back with us again this week and thanks for your input and picture (the stocking were quite a hit) on lymphedema. It is an effect that we don't raise often so I'm sure others will benefit from your comments.
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And I completely forgot about session last night.0
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BTW to anyone still on. Have any of you experienced unusual itching? I found towards the end of my last chemo cycle my skin itching...my scalp particularly. I feel like I have dry skin? But moisturizers don't seem to help. Switched bath gels and shampoo products to those with fewer ingredients in case I'd developed an intolerance to something in them but no change either. Anyone else notice the same thing? I'd put it off to addiing some extra humidity into the air in the house but really....our humidex out where I am has been at record levels so it can't be that.0
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@ToughAsTeal
oops, so did I although I hadn't intended to participate anyway. For anyone wondering what we're talking about it was the latest speaker series session on the Walk of Hope. Anyone attend? I usually get some feedback from OCC but Tracy is on vacation for almost the entire month so my regular "pipeline' is closed temporarily. Laura, I expect they recorded it though. Give it a couple of days and if you don't see if posted on the OCC website where they house all the videos let me know and I'll run it down for you.0 -
@Fearless - Vol Mod absolutely recall the itching especially scalp. Netflix=cool damp washcloth for duration of the movie brought relief. I would rub a bit of oil in scalp sometimes helped. Didn’t like cream on my head.0
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More scalp…. I only used smallest amount of baby shampoo and not every day.0
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Thanks Laura. I'll try those suggestions. Glad the problem isn't unique....was wondering if I had fleas LOL.0
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Not sure who's with us still, other than ToughAsTeal, but time to say goodbye for this week.
ToughAsTeal I do hope your treatments go well and you can get into a better groove moving forward. Everyone else, have a wonderful week. I wish you all health and happiness.
See everyone next time.......
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I wonder if mosquitos die after a bite on a chemo patient?! We mustn’t taste so good! Have a good week everyone!0
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@Fearless - Vol Mod I Have dry skin on my legs due to the lymphedema. I'm using Nivea Care nourishing cream (comes in a 400ml tub). For soap, I use Option+ Goat Milk soap, ultra moisturizing. Both products have a creamy feel to them.
Also, at Bulk Barn, they have individual soaps, and one of them is called a shampoo bar. You might like that for your itchy scalp.0 -
I’m always happy to share my art.
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@gaylestorm
I'm gobsmacked at how talented you are. Keep going on the painting you have in play right now. I only wish I could have the same kind of distraction. Thank you for sharing your work with all of us. You just made my day!1 -
@gaylestorm....WOW! These paintings are beautiful - I love them. You are blessed with a wonderful talent and I'm sure they bring as much pleasure to you in creating them as to those who look at and appreciate them. Thank you for sharing these with us!!1
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Thursday August 26 and time to welcome everyone once again to this week's live chat.
Although September 21st really marks the transition of summer into fall, I have always looked at the end of August to really feel like the summer is now behind us. I guess it's always been a time where everyone is preparing to get their children and grandchildren off to another year of learning. A time where the weather begins to shift to cooler temperatures, although with global warming it has become unpredictable, as evidenced by the extreme heat many of us have been experiencing the past week or so. But truly the next time we meet will be September and 3/4s of another year behind us already.
Got some wonderful news this week. Despite a rising CA125, my oncologist was able to compare a recent pelvic MRI to my last CT and my hiatus from treatment will continue until at least October. It seems I'm still stable and, in fact, a few areas even smaller than the CT had showed. So we're both hoping we can keep things that way when I have my next CT early October. In the meantime, off to see an oncology radiologist for a consult. It does appear the range of motion issue in my right leg and hip is likely caused by one small tumour pressing on the psoas muscle. With exercise it's improved so I can live with it if I'm uncomfortable with targeted radiation on the spot. But knowing as little as I do where it comes to radiation the consult will allow me to make an informed decision on whether to proceed or defer or just totally forget. If any of you have had any experience with radiation do let me know if there are any questions you think I should come armed with when I meet the radiologist.
The annual Ovarian Cancer Canada Walk of Hope 2021 is fast approaching (September 12); virtual again this year. I have to admit I've been very remiss in my usual involvement but have registered (it's free if you are a survivor) and will be sending out some emails and posting on social media to raise donations. But these Walks, of which I've now participated in three before this year, are not just about raising money or creating awareness but also serve to honor the courage, and resilience, of those Teal Sisters who have left us.
No other reminders today....or any earth shattering news to share for today at my end. And it's 1pm EST so time to begin our chat. What's new with you? Anything specific you're hoping the fall will bring? Any new challenges you're facing or anything we can be celebrating with you today?0 -
Happy Thursday! @Fearless - Vol Mod congratulations on your good news!! Sometimes our determination is stronger than the “standard of care”!0
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@Fearless - Vol Mod Good afternoon from Port Credit. You're truly an inspiration. The methodical, educated and thoughtful way that you go through your journey without drama is amazing. I wish I was as calm, cool and collected:)
So glad you're still on your hiatus and here's hoping that extends for a long while to come.
I've had my issues again with blockages and have sent my ct scans, clinic notes and blood work off for a second opinion from the Cleveland Clinic. Due to wait times here it seemed to be the wisest course of action.0 -
Happy Thursday😀 @Fearless - Vol Modi am so happy to hear the good news! I have just come in from the deck (so hot outside) but best place for my husband to use the #2 clippers..why wait? I could see it was already falling out! I feel so much better!0
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@Annie1950 is the Cleveland clinic named that? Or really in Ohio?0
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News from my journey. Tumour sample was delayed getting to PM so instead of knowing if I got into the trial by tomorrow it is next week. Waiting is of course awful! Had a biopsy on a tumour in my lymph node at my groin for the Bio Diva study. Not fun. But then I was fortunate enough to have a preventative (before next chemo) stent put in my kidney. Well, absolutely NO fun at all! Amazing nurse and Dr’s on both counts. Have to admit the nurse Mary talked me off the ledge more than once. However a week later I can report that all is good! So treatment delayed till probably Sept 14 because trial results delay but taking this time to enjoy lots of things. All moved into our condo and while it was an emotional adjustment we are looking forward to the “carefree” lifestyle.1
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@taita thanks. Funny that the night before I saw my CA125 had shot up, and realized that while the MRI was for a purpose not intended to assess the current state of my cancer, it covered the entire pelvic region and might actually show something new that a CT hadn't in past. I can't say how often that evening I kept reminding myself not to worry or obsess until there was something to worry about. For once I gave myself some good advice, had a decent night's sleep and was ready to do the happy dance after I met with my oncologist and got the news.
How are you, my friend?1 -
@ToughAsTeal The Main Center for the Cleveland Clinic is in Ohio but they do have smaller centers elsewhere. They have a virtual second opinion that's available online and it's extremely efficient. Toronto General/Princess Margaret say surgery for my blockage issue is not possible so for me it seems it's just a matter of time until I end up in emergency again with resulting hospitalization. This is the reason I'm reaching out for a second opinion.1
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Ha ha! @Fearless - Vol Mod I hear you. I had a CA125 a week ago after 2 months of no treatment and I was stressed. Finally looked and it had gone down to March levels. Sometimes as the saying goes “we just have to have a little faith in ourselves”. Easier said than done 😁. So happy for you! All good news is to be celebrated!0
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@Annie1950 I didn't realize you continued to have some reliance on your US connection. Is that because you can't find the support you need here, or have more confidence in them? There is a personal cost involved isn't there?
@ToughAsTeal I will bet you make a gorgeous baldie...and what better weather to have the burden of hair to attend to. BTW, when I was in the chemo waiting room waiting for my blood draw the other day a gal came in whose head was completely bald but had had henna designs drawn on it. I'm not sure what they're called but the designs east asian women usually apply to their hands. Anyway, I complimented her on how lovely it looked and her response....figured if I was going to have to be bald, I might as well flaunt it and enjoy it! Great attitude.
@Taita oh, my you've been through quite the ordeal of late. I too had a delay in acceptance to the trial I was on. About two weeks while PMH and KGH argued over costs associated with PMH providing KGH a sample of my initial tumour tissue. A whole mind boggling $35, which my KGH trial coordinator paid out of her pocket to get the sample released. I do hope though that the news is positive and you can get on that trial. Keeping my fingers crossed for you
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@Annie1950 agree you are wise to seek a second opinion on something that defining in terms of quality of life. And I"ve heard very positive reports about the Cleveland clinic, just didn't know they had an online presence and that we, Canadians, can access it. I'm going to tuck that little piece of knowledge in my own back pocket in case I need it at some point. For you, I do hope there is a resolution for your blockage issue that doesn't just revolve around hospitalization every time it occurs.1
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Hi everyone,
Congratulations on the good news, @Fearless - Vol Mod. It must be a huge relief knowing that all is well – and a wonderful way to spend the remainder of the summer!
Didn’t think I’d be able to join in today, but I have just got back from my 1-year post treatment CT scan, following a blood test last week. Really hoping for some good news – or at least news to take away some of the angst I’ve been feeling due to the physical symptoms I’m experiencing: bloating, constipation, pain at the hernia spot to name a few.
But I'm going to brush all that aside for the moment - going on vacation next week! My daughter is getting married -and I can't wait to be with her!
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@Fearless - Vol Mod The wait times are so long here whereas if I pay, it's not a ridiculous amount, I can have my exams reviewed by specialists in their field and recommendations within a week or two. A second opinion is always a good thing.
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