Zoom Meet-up for Those With MBC: Place to keep chatting
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Cheryl,
Good for you for finally saying "enough to the job." Looking forward to your being back on the Monday call.
Mary Jane
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Hi all, I haven't posted here before but I'm excited to join in
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Hi @Rosebessie !
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Welcome, @Rosebessie! Please let us know if you need any assistance getting information on our main site or navigating the forums. We're here for you!
The Mods
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I think I’m posting to the correct meet up thread, please correct me if I’m wrong.
There was some wondering on Monday about my living situation and cabin build, so I’m adding photos.
The first is the front, mountainside view and a side view showing the travel trailer we cook and shower in (no indoor plumbing in the cabin itself yet, but soon!)
The second group of photos show what will be the kitchen area, walls partially insulated with sheets for temporary curtains and my side of the bedroom, which i gently insisted that wall panels be installed so I could get some furniture out of storage and be somewhat organized. The whole thing is chaotic and testing my patience. You see why I’m always in the bar?
I guess it’s a bit better than camping but this is still roughing it to me.
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Wow, Mae, it’s getting there, but I know it’s been a little while since you’ve been living partly in the camper and partly in the cabin. I hope things pick up speed for you.
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Brain MRI results were mostly good. There’s nothing new which is great. However, the “enhancement” is a tiny bit bigger, so my next MRI will be a more advanced one. If it looks like cancer, I’ll have gamma knife again. If we still can’t determine what it is, we keep watching it. Either way I’m not particularly concerned and feel no urgency, so it’s fine to me.
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Thanks for sharing your news!
Happy holidays!
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Thank you for the update, Mae. If you’re not there next Monday, have a wonderful Christmas and New Year.
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Update: Echocardiogram is normal and the CT body was all good too, nothing going on.
Heading home tomorrow. Thanks for thinking of me 🙂
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@illimae - 👍️
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YAY, illimae 😍
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Awesome, illimae. Safe travels.
Kris
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Hi all, I've been MIA for a while. I do hope everyone is well despite the numerous challenges we face in this MBC journey.
I've been facing massive challenge trying to be there for my Monday Zoom. But the moving of clock forward means it's 10pm when we start our meetings, and by then I'm doing. Yes, I did manage to my sleep back, thanks to Melatonin. But I miss you all and the valuable information and awesome personal stories...🤗🤗. That group is my source of crucial information and it arms me with knowledge and energy to face the next day.
I shall try and make it this coming week. All things permitting
Sending hugs 💕🙏🤗
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Hi, Rose. I had asked about you Monday and then you popped on like you heard me. I’m sorry you kept losing your connection. In case you didn’t know the two Mondays after this next one coming up, there won’t be any meetings, so I hope you can make it to this one. I’m sorry it’s so late for you. I’m glad the melatonin is working. I tried that once and had such horrid dreams, that was enough for me.
Hugs back to you.
Kris(KBL)
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Hi Kris, thanks for thinking of me, and also for updating me on the meeting breaks. I missed your update on Monday coz I dozed off.
I hope to be there with my eyes open. The dozing off is a pain, although I appreciate the ability to sleep. I tried Stilnox for the insomnia and it left me with terrible gastric reflux amongst other side effects. Sorry melatonin didn't work for you ☹.
My journey just got tricky with my Neutrophils dropping drastically. I've no idea why but I'm reluctant to change treatment coz the options here in Kenya are very limited and I'm trying to hold on as long as possible to Ibrance. I'll see how my appointment with the Oncologist goes on Monday.
Hope to see you Monday
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Rose, the neutrophil drop probably doesn’t help with the dosing off. I’ve done that in our meetings as well when I’m exhausted, and it’s only 2:00 here. If I don’t have a nap before the meeting, I struggle sometimes. I totally understand.
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Kris kbl
Oh, now that you mention it, I connect the two... Fatigue and low Neutrophils 🥺🥺. Thank you. I do hope I can join in tomorrow.
Sending Hugs
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Hi friends, so, the results that I didn’t have in time for Monday’s group are in. Not cancer 🎉 The spot we’ve been watching is treatment related effect from my previous brain surgery and radiation, not anything new or concerning. Yay 😁
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Oh, illimae, what fabulous news!!! 🤗
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@illimae - that is great news❣️
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That is such great news! Thanks for sharing!
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That’s wonderful news Illimae!
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I’m so happy for you, Illimae. That is such awesome news.
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Hi everyone. This is Teresa btw. I just got my PET scan results in my portal and they aren’t what I was hoping for: multiple new bone mets, growth in some previous bone Mets, and 2 new liver mets. I only got 6 months out of abraxane. I meet with my oncologist Thursday to find out the plan. Now I’m sitting here crying and questioning whether we should go on our trip in 3 weeks. Some days are so hard.
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Oh Teresa! This is really upsetting. If you can come to group tomorrow (Wednesday), hopefully we could help you through. You'll know a lot more on Thursday, and hopefully your oncologist can get you up and running with a new treatment immediately, and you can still go on your vacation, with a full arsenal of things to help combat any side effects. Some days are REALLY hard! We're here for you! xoxoxox
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@flowergirl55 This is Kris from the Monday meeting. I’m so sorry. I will be on the meeting tomorrow, and Mary usually comes as well, sometimes Catherine. There are a number of us that go to Wednesday. Please come if you can so we can support you. I can’t remember if you’ve had a blood biopsy to see if you have any mutations. Hopefully, if you haven’t, your doctor can do that to see if there would be other drugs available. I’m sending you hugs. 💕
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I'm sorry I missed group Monday - I was getting scans and more drainage from incision. Theresa, I just read your post and I'm so sad to read that you may not be able to travel. Sending hugs and prayers. Bev
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@flowergirl55 - Theresa, I'm so sorry you didn't get the news you were hoping for. It will be good to see your MO and hear his plan for your next treatment. I'd hold off making any decisions about travel until then, at least. (And I'd be really pushing to go if you feel up to it.) Hugs.
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