Best Of

It seems really imperative to read the notes. I think they jot down what they want to cover, but they don't always get to everything in an actual conversation. I worry about the folks who don't ever read the reports. For example, I read the notes saying I should be taking a calcium supplement but I have no memory of the onc telling me this. Now, it may just be my memory is at fault . . . I'm by no means perfect in this regard! Since I've been very healthy all my life, I am really surprised at how much I have to be in command of my own health information now. It's a new world. All of us here are intensely interested. But what about people who are too scared or don't have the capacity to do this kind of study all the time? It's a lot of information.

Oh Candy; I feel for you. I spend a lot of time at home, looking after my special sons. (They will eventually move to a group home, but they currently attend adult day programs.) It can be isolating. I often can't leave the house to have coffee or lunch with others. There might be some volunteer work you can do from home. I belong to a small church-based charity where we help people who are struggling to pay their rent and utilities. Most of this work involves calling people, the utility companies, and landlords/property management companies. It feels good to help people (and to talk to articulate adults) without leaving my house. Just a thought. ((Hugs))

mara, you're like MacGyver when it comes to repairs and even with your food combos. I'm sorry you got lightheaded. That's always a little scary. I'm glad you were home and could rest on your own bed.

snow-drop, welcome!

intolight, I'm glad you're getting the dose reduction. My MO started my on the 7.5 of Afinitor rather than the 10. I've been on it just over a month and she offered to up the dose to 10. I'd rather stick with the 7.5 and she's OK with that.

Waving "hi" to all who are hanging out here this morning.

Carol

Thank you all for the well wishes on my stable scans. I am sorry to read on here about the struggles you all have.

I was looking on my patient portal. The scans are not there yet- it takes 7 days- but the MO note is there. Mentioned my telehealth visit versus in-person, due to my vehicle being in the shop- yes it said that. But then went on to say- "no complaints of headaches, back ache, or joint pain". WHAT. I hurt all over with the arthritis. Shoulders, thumbs, low back (chronic for years), and right hip. And it said, "no problems with energy". Huh? I tell him I have fatigue, and he had to do that paperwork for my LTD a couple of months ago where we talked about how I cannot work due to the fatigue. I know the doctors are busy, and he did document about my scans looking good and to continue the same regiment, so the basics are there, but no wonder when someone reviews our medical records they don't get the true story of how we are doing. But what can we do? I cannot call him and say "correct your notes". Crazy.

I have been thinking about stable for 4 more months, until the next set of scans. Then I was watching Shawshank Redemption last night—— GOOD MOVIE. Andy says "Get busy livin, or get busy dyin". I want to live for the next 4 months. But how? I cannot go back to my old life. I cannot get a job. I cannot feel good like I used to. But I have the desire to do- - something. The Fall season is coming. I love Fall. I want to do, to have friends, but I don't know how to go about it. But I am going to try. Look for opportunities. Small things. Oh how I wish I had more friends or family. I am pretty secluded.

I wish you all well.

Ive had non stop problems with my mouth. The only thing that helped was that rinse and salt water rinses. The salt water made a difference for me. It wasn’t pleasant, but it relieved some of the pain. I’m so sorry. I know how it feels. Chapstick worked Vaseline didn’t. I think it’s just hit or miss . I have trouble eating as well and my mouth bleeds a lot. I’m so sorry this is happening. I know the rinse is good. I did have some succuwirb biotine for a while when I changed things up to see what would work. I’m so sorry you’re going through this honey. I know how it feels. And so does Tanya. Wrapping you in big hugs. Love to all.

Welcome snow-drop! If one has to have this stinkin’ disease, it sure helps to have all these sisters along for the ride. There is so much comfort and caring in Mel’s living room. We sure understand the good news and the not so good news. We’re always here for each other.
Intolight - I hope the dosage reduction will help your side effects. It certainly helped for me, although I’m on Ibrance. Interesting that as you get older the side effects worsen. Sometimes I think it’s in my head but it’s reassuring to know there’s a real reason for feeling the way I do.

Our 6 hour drive to our friends in Michigan took an extra 2 hours due to an accident that had thinks at a standstill. Thankfully we made safe and sound. Fingers crossed the trip home will take the usual time.

Sending wishes for a good weekend for all - with lots of rest and pain free days.