My Husband, My Life, My Love, My Family, My Cancer
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I just can’t get a handle on this new site. My information is gone and I’m trying to put it back. I feel like I’m just scrolling all the time. When I sign in it takes me somewhere and I have to figure out how to find our room. I am just going to have to keep at it. Hope you’ll all keep trying too.
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testing everything I can. Here is our pocket hug. We always say. Pocket duty!
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Micmel - when I click on my Avatar, I get a drop down menu. If I click on Bookmarks, I can see My favorites.
A second way is to click on the bell symbol and see a list of notifications. It allows you to click on a notification and will take you to that post.
Hope one of these works for you.
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Mel, I use the bell symbol to get to the threads now showing up as bookmarks. I do wish we had the ability to move to the bottom of the pages without so much scrolling. I did manage to put my dx back which is helpful. I missed a lot today in the posts. Glad the dislike button is gone, probably not going to pay too much attention to the like button etc, reminds of facebook but I still appreciate the faster loading pages.
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Hey, everyone. I just wanted to see what the new site looked like. Mmmm. Not sure. 🙄
Where did the "search" go? As in searching for a particular thread or person…….
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Elderberry, there's a search magnifying glass at the top of each page, next to your avatar.
I think getting rid of the dislike button was good. I think the other buttons have potential to acknowledge someone's post that doesn't really need a verbal response- or for the days you (ok, *I*) can't string ten words together.
As with anything new, I think there will be some fine tuning. Reading the new guides helped.So far, I like that we can see more posts on a page. I like that we can save drafts of our posts. I like the idea of the notifications on your avatar (still getting used to it). I still have a hard time getting to bookmarks/ myfavorites when I first log in, which is frustrating, but I had that problem on the old site. My solution is to create a shortcut/bookmark in my browser and use that. I choose to be optimistic. :)
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It IS a lot of scrolling, I keep expecting it to just zip to the bottom like on Reddit or whatever. Ill start trying the bell function here for bookmarking.
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@candy-678 You don't have to bold a member's name anymore in order to show them you're talking to them. You can @mention them (just like we did for you!) to alert them they're being talked to or referenced. You can learn more here:
We hope this helps!
—The Mods
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Well, dull and cloudy here this morning. Just puttering around with laundry and such, need to pick up an overdue prescription, think I can walk as the weather is not bad, thinking of getting a proper rain poncho that folds up. Better for me in one of those vs using an umbrella since I feel two arms are needed for balance, we will see.
Yesterday, I did make an omelet sort of thing that came out almost like bread. Added some italian sausage, cheese and two eggs, blended them up together and cooked in the sandwich maker. I did add some pancake mix for whatever reason. Came out pretty good and I enjoyed it.
This morning, I want to poach an egg and have beans and the works which means lots of different dishes but that is OK, biggest thing with a small kitchen, need to clean up dishes as you go. I also like the Walmart frozen sausage patties too.
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Well it took me awhile to get here but things still aren't working right on my original phone. Now I have to use my husband's tablet. It is a beautiful weekend here. Took Belle out for a walk yesterday on a trail. Met up with another walker and her dog. Both dogs were trying to say hello to each other. I stood to the side but somehow tripped on a branch and went falling on my left side and hit my head on the ground. Geez! I still had 2km to get to my car. Today I can hardly move and my neck won't turn. Husband's turn to walk the dog!'
I guess if I have to use my husband's tablet now we'll be fighting for dibs
I hate change however good it is. I am no tech wizard
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I’m so sorry you fell. My goodness I hope your neck feels better soon. Falling like that is like whiplash for your body. Rest up. Feel better living. So sorry. I’ve fallen. Few times. I know it sucks.
At least I got my information to come back. I’m trying to figure this all out. The thing I miss is the arrow to the top of the page and arrow to get to bottom. I like to make sure I don’t miss anything.1 -
Scans weren't stable - the bits in my hip were more active than January and with tumor markers inching up, I will be switching to a new treatment from June, TBD pending liquid biopsy. Disappointed I didn't get longer than 14 months or so on Lynparza but what can you do. Still bone only and minimal disease burden, unfortunately there always seems to be one little patch somewhere that keeps me from getting to NEAD. Onc has a load of options (4 or 5) and was thinking through potential treatment strategies based on incoming drugs, which is great to feel supported, its just the unknown of new side effects to deal with.
Sometimes I wonder if a short course of chemo at the start for the de novo folks wouldn't be the smart move, you know, get a head of steam going and kill off a bunch of disease before going onto the CDK 4/6s and everything else.
Just wish I could get this cancer monkey off my back but we all know you cant. Just to be free for one day to live like other people who dont have a terminal disease. I know you all get it!
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Sondra, I am sorry your scans were not stable. Always in your pocket and hopefully any new treatment not only works but is not too bad for SE's. I may have stable scans but the continual appointments and Herceptin as well as my loss of balance remind me that I am not where I was at before dx.
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Sondra— Sorry you are going off Lynparza. You got 14 months out of it, wish it could have been more. I am still on Lynparza— I get my next scans June 5, so we shall see. I am starting month 20 in May. My MO looks at my liver tumors. She doesn't really seem too concerned with the bone mets. We just do a CT of chest, and what bones show in the "bone window" that is all we look at the bones. We do an MRI of the abdomen to look at the liver mets, and the other organs (I don't have any mets anywhere else yet). Sometimes I wonder if the bone mets are really stable. With all the arthritic pains I cannot tell from symptoms if the bones are getting worse.
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Sondra
Sorry lynparza has failed you. Fingers crossed for an effective treatment with minimal SE's
Eleanora
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I think I’m playing catch-up here.
Kittykat, crap! I’m so sorry you fell. My biggest fear (or at least one of them) is falling alone with no one to help me get back up. Sheesh, isn’t that a problem for old people? I hope you’re feeling better and a bit stronger.
Livingivlife, I’m sorry you fell too. This stinks. I hope DH will give you dibs on the tablet!
Sondra, I’m sorry your scans weren’t stable. It’s disappointing, to say the least.
Mara, I missed your posts with breakfast suggestions. I tried to find hashbrown patties at my local store, but no luck. I did see them on the store’s website but I’ve never used their delivery service. Does Costco have them? I think Trader Joe’s has them, but I’d need DH to drive me there.
Mel, mae, cookie, sf-cakes, emac, goldens, denny, sadiesservent, seeq and anyone I’ve missed, I hope you all have a peaceful pain-free and frustration-free day.
Love and hugs,
Carol
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Sondra I can only imagine your disappointment this disease is so cruel and unfair. Sending positive vibes that your next plan carries you through for a long time.
Dreary here all weekend on the East Coast we hope to see the sun a bit tomorrow. Keeping busy cleaning and organizing old photo albums. Love to look back at my kids pics when they were little, time sure does fly!
Hope everyone is having a calm and beautiful Sunday.
Oh I am also missing the thread jumping to the bottom, hope that returns! Scrolling and scrolling…………😕
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Popping in to say hello. I'm struggling today feeling very foggy. I guess that's okay for a Sunday. I'm not hurting or feeling sick, I just have some mental fog and feel tired. I have not been sleeping well and I'm sure that's part of it. I'm using that excuse to nap today.
@sondraf I'm sorry to hear of your progression. It sounds like you have some options. I am always happy to hear that. Hoping that the next treatment works better and longer for you.
@sunshine99 up here I think I've seen frozen hash browns at our local Kroger store (in Oregon it's Fred Meyer) and I'm pretty sure I've seen them at Costco too.
@livingivlife hoping your neck feels better soon.
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Sondra~I’m sorry you have to switch treatment. I hope it’s low side effects and it kicks some cancer rear. It’s frustrating I know. I will be thinking about you and hoping you’re going to have this go smoothly and work well.
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Morning all.
I don't think this new site is all that and a bag of chips, know what I mean. I miss the up arrow key at the bottom of the page. And it seems harder to see the new posts—- not My Favorites, but when someone creates a new post and it is not on My Favorites yet. And the mods still have not figured out why my Profile is not showing with my posts. Also, if I think of someone and think "hum, I have not heard from them in a while when did they last post" How do you Search for them???
Anyway…. Yesterday (Sunday) I went to in-person church again. I still mask (the only one that does) and I sit in the back, not shoulder to shoulder with others in a pew. Not quite the same as before, but the best I can do for now. Then, Sunday afternoon, my sister's in-laws were having an Anniversary celebration at their church dining hall. Cake and punch. I went. Masked and didn't remove to partake in the food, but stayed for 30 minutes or so and said hi to some people I knew. Biggest crowd I have been in for the last 3 years—- probably 100 people or so. I guess my "New Normal". Geesh I hate that term.
Anyway…. Hi to all.
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If you can get to a Walmart, I see they are sold there if you are looking for the hashbrown patties. I don't see them on Costco, I know that does not mean they are not there. Walmart or Trader Joe's should have them there for you.
I am not doing a lot today, walking some, PT, surveys and games for some extra money. Paid out bills, yuck but it must be done I know. Going to start using one of my mobile game apps to get Amazon GC and buy peanut butter or whatever there for free or just a couple dollars. That would take a bite out of groceries. Aiming for 25.00 per week if possible, I do have a lot of canned beans, rice and meats. Mostly actual beef as it is less expensive to buy. Plenty of seasoning as well. I have to be more careful this month, I spent a lot on clothes in April for summer which is fine but I want to make sure I am more conservative and frugal this month and the next. If I want Walmart, will skip delivery and buy stuff there.
Breakfast will be a combo. I will chop up 1/4 cup black beans and bran, spinach chopped, cheese as well and 1/8th cup rice. On top I will poach an egg, add some chicken seasoning, steak seasoning and the usual to bind it together. Going to start using my treadmill again after breakfast, been a while since I have actually used that, split up the day with some outdoor walking if the weather is OK, money making with the surveys and such as well. Almost need to write a schedule down. I also want a micro pancake fitting in as well, perhaps as a dessert, we will see.
In everyone's pocket who needs me for healing vibes and Candy, glad to hear you kept yourself feeling safe with the masking AND got to see people again. That is great.
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Living, I do hope you are feeling better from your fall, I am so sorry that happened to you. In your pocket sending warmth to your neck to make it feel better as well.
I will say I do feel like I am missing a lot of posts with the amount of posts per page, I like the loading time of the site but the amount posts per page is a lot. Mods, is it possible to have fewer posts per page so the scrolling does not miss people?
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Good morning Mara and Candy. Emac.
Candy glad you got to get out some. Added protection is a good idea for sure.
Mara~You’re so resourceful, the ideas you have about your concoctions are amazing. I don’t know how you do it. I feel lucky, DH cooks for me. He takes amazing care of me. I wish everyone had someone like that to help them. I know how difficult and how strong you’d have to be to cook all of that yourself. Not to mention how much you walk. I’d like to walk but the one spot on my spine complains after a bit. Also sitting to much isn’t that great either. So it’s a toss up.
I hope everyone has a good Monday and hope to see everyone start to come back again. Hugs to all.0 -
@candy-678 ‐ I didn't think the search bar was particularly intuitive, but I found that if I click on the magnifying glass, then just press enter (or Go) without entering anything else, it brings up a more traditional search page with option for member search.
I think having more posts on one page will help when responding on such a busy thread (especially if I’ve missed a day). I do miss the jump to top/bottom of page buttons, but I'm guessing they'll be back.
I meant to post more, but I'm being called away.
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Candy-678, if you click on the person’s user name and look at the bottom, it will tell you when they posted last. I hope that helps.
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KBL~thank you for the tip!
Haven’t seen Tanya. Chicagoan, wren , Goldens and a lot of others. I hope they can log in ok.
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Hi Micmel-I'm here in a back corner of the living room. I thought I followed all the steps to have my treatments shown but they are not appearing. Sooner or later, I'll try again. Hope everyone is doing ok. I went to a great concert tonight-saw YoYo Ma. He is so full of joy when he plays-it was inspiring.
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so glad to see you Chicagoan! Sounds like you had a good time. That sounds great. I loved going to see live shows. Takes you away for. Bit. I had to copy and paste mine. The mods helped me fix it. They are helpful
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Chicagoan, I am glad to see you. It took me a day or two to figure out mine as well though dates are missing.
I am doing the usual stuff today, PT, going for an outdoor walk, mobile games and surveys for free groceries. Laundry and figuring out food as well.
Foodwise, going to do an experiment with pancakes which would be eat them as toast. No syrup, just butter and peanut butter. I find that I don't enjoy english muffins or other breads when they've been in the freezer. Would be easier to make a pancake and put peanut butter and butter on top and use that as bread or garlic bread etc. We'll see, going to try the toast this morning. I love syrup as well but cannot always have that much sugar content. Could add an egg instead of water for extra protein too. I will post if it works out well.
Edited to add that I did use 1/3 pancake mix, 1 egg. Mixed and cooked in sandwich maker. Easier since I have no need to flip them. It came out a bread texture, not crunchy but that is OK. Did not detect the egg. Buttered and added peanut butter when it cooled and ate by hand. It was super thick and filling but did taste good and more pleasing to me than an english muffin. Will work the combo into a smaller pancake or start adding beans and bran to it and eat with a knife and fork. I will forgo the white bread stuff I buy. This just adds an extra dimension to pancakes without having to keep up high sugar load of the syrup. In future, I may try 1/4 cup pancake mix instead, we will see. Lots of protein though, that is for sure.
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Mel - thanks for asking. I am able to get on the newly formatted site. Still no real pain from surgery, just sore and stiff, and tired. Spending time doing pt at home and icing. My pt comes in the form of a passive motion machine that I have to use about 4 hours daily. I increase the settings each day by a couple degrees to increase stretch. So I watch a lot of tv. It always saddens me to hear of the struggles that our sisters go through. I wish we all could be on a level playing field. Btw - we had snow showers yesterday🙄🙄
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