Can we have a forum for "older" people with bc?
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Agree 100% @denny10. Filling out a feedback form.
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denny10, I sent the mods a message yesterday about the dislike button. I explained how it could be hurtful especially to those who are already feeling vulnerable due to their cancer or fear of having cancer. I don't think they care. This change was made to please the young users, who I guess make up most of this message board, those who grew up with computers and don't know a world without them. I do wish you success in trying to do something about it though because the question isn't "if" the dislike button will harm people, it is a matter of "how many" it will harm. In my opinion, one is too many!
People don't seem to understand that the written word doesn't come with the same tone or inflection of one's voice that talking has, thus it is much easier to misunderstand the intention of what the writer actually meant. Using buttons to express oneself, like emojis might seem fun, but save those for Twitter and FB and leave them off of forums dealing with disease. If one is too lazy to put their thoughts into words, then they don't belong on a forum like this!
Cardplayer, I tried your link but had no success. I am technology challenged, but can usually navigate a system with success. I am not feeling in a mood conducive to trying to navigate a website. I will try again at some point.
I listed all my treatments yesterday, clicked save, but nothing. I am extremely frustrated with this site and hearing that others find it so easy, while good to know, makes me feel worse, wondering what is wrong with me that I can't find success?
I left FB and Twitter years ago because I felt horrible after every time I used those sites. I would go on them feeling happy, then read something and would leave feeling terrible.
Online friends are not the same as real life friends, and on those sites there were too many bots that pretended to be real people. I never thought that was an issue here, which is why it makes me so sad that I can't navigate the system very well.
BCO is the only message board I use, but now for me, it is just like Twitter and FB, going in feeling optimistic, but leaving feeling sad and depressed. I just don't need more of either of those two things! Once a place of hope, is now a place of confusion and frustration. Maybe I will try again next week, but after days of being unable to get on the site, followed by frustration, I feel any "addiction" I had to BCO is gone.
I do hope it all works out, even if I if I decide at some point not to stay part of this group. Again, time for me to step back, take some time, get away from all things breast cancer, and try to regain my inner peace. Then I will decide if I want to try this again or not.
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I haven't seen anything from Jackie, since the changes.
MM, I hope you stay on. I consider the folks on this forum as my BC friends. I guess that is why some of us stay on here for years.
Cindy, have a safe trip back home.
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Ultimately we have just one moral duty: to reclaim large areas of peace in ourselves, more and more peace, and to reflect it toward others. And the more peace there is in us, the more peace there will be in our troubled world. -Etty Hillesum
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I'm admitting to many of the same issues as MM. I was so confused I wasn't even sure the site was NOW actually open since I was seeing so many entry inputs coming through my regular email and they would have the actual post on them too.
I'm going to attempt to LEARN how to use the site now, but I'm losing my optimism. I may just be too old to learn anymore. I taught myself to use the computer starting about 20 years ago and frankly, with this new BC. Org version I feel like I'm almost having to start over. I hope I can make it work and I hate that I am starting out with not the best attitude — but it does feel a little like some of us could be left in the dust. 🙏
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MM: Don't leave, I would miss your chatty posts where I feel like you are actually conversing with me. I think all of us can agree to disagree without the use of a button to record our feelings.
I, for one, don't intend to use any of the buttons because I feel they are somewhat judgmental and superfluous, but then I've only used emoji's on rare occasions. If I don't like someone's post, I really don't feel the need to do more than move on and ignore it. They may be having a bad day and I know I have had my share of them. Perhaps it would be better to just ask them if they are okay?
I don't like the navigation I have to do to find the forums I like and did like the old menu style page where I could scroll down to see what the daily offers were. I liked seeing the main topics and do have favorite forums bookmarked but now I think I will miss new main entries that might appeal to me.
Enough kvetching. We went to a Phillies game yesterday and it was a good game. They beat the Mariners 1-0 and the one run was scored early in the game. The weather was not what was predicted: sunny and 64 (nope) but more overcast and 54. So it was a cold game for me even though I had bundled up. I had gotten tickets through PSEA at a great price and my DD and DSIL accompanied us for a nice day out. Only negative was we had to park so far from stadium so my aching knees were screaming by the time we reached our great seats. One guy behind us never stopped talking during the entire game and his conversation had nothing to do with the game. So I was wondering why he bothered to buy tickets for the game when he could have gone to a coffee house or bar and had the same conversation much cheaper? The games move much faster with the time clocks and it actually took us longer to get there and back home than the length of the game.
My swollen knees both have fluid in the joint so this is why I am having so much pain and hobble as a result. I see the Ortho doc on 5/5 but it seems so far away and google says this is an emergent situation (should never google). However, google doesn't have to deal with getting an appointment to be seen and my appointment is a "consultation" so I am not sure if he will drain them that day. Yesterday's walk was a killer so DSIL went to get the car so I would not have to walk as far and it was a blessing.
This is the only social media I have ever been on since FB was a "no-no" when I was employed and I never liked what my students told me about what they saw or read. Like the student who always begged for extra help because she had to miss class for work, etc and in actuality spent every weekend consuming inordinate amounts of alcohol and partying so this is why she missed clinical and class. Students who were fed up with her excuses showed her postings to her BIO teacher, me and the dean of my department. After the dean spoke to her about this, she dropped out of the program. Future employers always asked for access to student's FB pages and if they declined, they were not hired and if what they found was not to their liking, they also were denied a job.
I hate to see familiar posters leave due to issues with this new format and hope that the Moderators will listen to the feedback offered. As users, I do think our thoughts should be taken into consideration because we are why BCO exists: a sisterhood/brotherhood of BC experienced women/men who offer insights and support to others with this unwanted experience. I feel comfortable here with the friends I have made on this forum and hope that once the kinks are all worked out, we can find that place of comfort and support again.
MC: good luck with your surgery.
Karen: each week of treatment means you are getting closer to the end of your arduous journey and to your desired outcome. So keep on trucking, we are here to support you through thick and thin.
Cardplayer: a friend and his wife babysat their grandchildren (toddler and infant) for a week and concluded they now knew why God did not give babies to "old" people. They took turns doing shifts of care versus naps and needed 2 weeks to recover.
petite, cindy, and anyone else I have missed, glad to see your posts.
Have a good day.
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Hi all, I too am having trouble. Hard to find how to add my avatar. Did it twice and now can't even find it to try again. I've read the user guides to help and following it doesn't seem to help or lead to success. Navigation is really tough.
You all are my BC friends and I hope this all sorts out. I'll give it some time and try stuff on my desktop not phone.
Thinking of all going through "stuff" and thanks for letting me get to know you here. 🙏 ❤️
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Do you want to email us an image and we'll do it for you? community@breastcancer.org?
Or read (again) here:
Click Your Breastcancer.org Profile in the Quick Links menu on the right side of your screen on desktop, or at the bottom of the page on mobile.
Click Edit next to Account Settings on desktop or under Account Settings on mobile.
Click Edit Profile Photo.
Use the pop-up file selector to locate a photo file from your device. Note: The recommended maximum size for profile images is 500px by 500px.
Double-click to upload the image you’ve selected.
Click Save changes.
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Mavericksmom - Sorry you’re having trouble navigating the site. I sent a request to the Mods and they removed the dislike button. I think if you ask the Mods they can help with updating your signature and other issues you’re having with the site. I hope you stick with the site. I enjoy hearing from you.
Illinois - glad to see you and your daily quotes back. I hope you stick with the site. I enjoy hearing from you as well.
Betrayal - I’m still figuring out the navigation as well. I seem to land on an odd page when I log in, stumble around and eventually find the correct home page. There I see a bell 🔔 at the top of the page that shows me things that I haven’t read yet. The page is pretty clean with a search area and other useful information. I need to explore more. Sorry to hear that your knee is bothering you.
Mary - glad your starting the prep for your knee surgery. I’m sure you’ll be glad to get that behind you.
petite - glad to see you back posting.Karen - keep us posted on how you’re feeling after your treatment today.
reader - good to see you back on line.
It’s raining here today. I had a PS appointment this morning and other errands to run. Glad I had my 20+ year old Costco raincoat. Need to start pack for my trip to Las Vegas. We leave Sunday morning, flying out of BWI. It’s a 90 minute drive from our house but we can have a direct flight. Looking forward to a trip away for a couple of days.
Hope the others are able to get back online soon. Have a good afternoon.0 -
Staying ahead of any nausea - I have a filling that the oral chemo that is 21 days on, 7 days off helps with the nausea. It is a re-formulation of Thalidamide. You should have seen the paperwork that I had to be allowed to get. Top of the forms said "for women who cannot get pregnant"
Betrayal - Sorry about your knees.
This 16 rounds of chemo total is what they called "Induction". Only step one of the treatment. We meet with the transplant doctor on the 10th - stem cell transplant should be the next phase of treatment, then maintanence (sp). I can't spell today. I really can't wait to meet her and get details.
Still waiting on the genetic testing. I have access to results through a sort of patient portal. It is still in the processing phase.
Almost to the donut hole phase for Rx. What was costing me about $70 copay will become $900 copay as soon as I hit the donut hole. Two more cycles unless they extend the induction phase.
Hopefully we can all figure out this new platform. I'm using the side bar to get to the threads where it has flags. forget what it is called.
Have a great rest of the day.
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Cardplayer, thank you for getting the dislike button removed. Although I had not commented on it, those buttons seem inappropriate in threads that actually deal with disease and emotion.
One other think I would like the Mods to be aware of - I have used their feedback form twice now in as many days. It is cumbersome to use. I assume the use of the form directs comments to their IT people, however, when the issue is small & direct - like the like/dislike button, it is too cumbersome. IMO, I feel the Mods should be able to copy/paste the comment into their form so it gets directed to the people they feel should know.
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Jhl - I can’t take credit for getting the dislike removed. I think I was probably one if many who contacted the Mods about it. I think they have an email address to contact the Mods, but don’t know what the address. Might be a better way than the form?
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Mods do the instructions you provi,ded work on an Android? I tried the steps again with the same results ( looping back, no way to upload picture).
I will probably just email you a picture to load. Thank you.
Also I clicked on site map ( looking at bottom of page) and got a stack/ runtime error or similar
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Hi All, In general the feedback form is the best way to currently reach us. It's soooo difficult to keep track of all the reports within the discussions, private messages, emails, etc and the Feedback form goes all to one place where we can reply 🤗
Reader425, It SHOULD work, but we'll take a look.
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I’m on an iPhone and can’t get an avatar put on either. So I’m not thinking it’s just androids. I don’t have a picture and thought I’d add one but such is life, I’m ok without it.
Another super hot day, almost black skies all morning but not a drop of rain. Sun came out and it’s now gone again.
I spent a part of the day clearing out our laundry room, so I could get access to the dryer vent. I bought a tool months back on Amazon that hooks on to a drill - to spin it around and clean out the vent. As I took off the vent from the wall, there laid a bent nail. When they put the new roof in they also replaced the roof vent so guessing a nail came straight down. There was very little lint in it, thankfully. I think the roofers got a big handful of lint when they did the roof vent. I can leave knowing it’s clean. I passed the tool on to my neighbor for his use, and will share it with anyone in our group that wants it. It’s easy enough to use vs hiring someone.That’s it from this neck of the woods. Enjoy the weekend.
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Hi @cindyny, for the avatar issue, can you submit as much information as possible on it to our ? It goes directly to our tech team, who can then investigate into it further.
Thank you!
Sincerely,
The Mods0 -
I'm glad as well the dislike is gone. It has been a gorgeous day here and I'm getting ready to cook some supper. Not sure what to have but we will see. I think it will warm up okay again. We are seeing some blossoms on trees and that makes me happy.
It is warm enough for the wood beetles to be showing up in the house. They are an outside 'bug' that gets in who knows how but my daughter has fits. They don't bother anything inside and I doubt they are all that happy to be here either. They are just rather un-attractive, but in fairness, Kate hates all bugs pretty much equally. There are a lot of them in our part of the country. We had few issues in Calif. save for sand fleas, but almost never saw bugs in the house — a few stray ants from time to time.
Hope you all had a fantastic day.
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Good to be back and to see others finding their way back here too! FWIW, Twitter has a "heart" button (for "likes") but no "thumbs down" for dislikes. Nextdoor has a whole bunch of "like" alternatives (love, agree, wow, haha, and sad). Every forum has its quirks, The old typographical formatting buttons now appear when highlighting text—I guess it saves onscreen "real estate." Nice not to have to relearn macros (especially on a phone or other keyboard-less device).
Happy anniversary to all celebrating! Karen, I hope you indulged in real maple syrup on those waffles! As far as "obesity," it's complicated. BMI doesn't take into account the fact that muscle & bone weigh more than fat; body fat % fails to account for the location of that fat—visceral or subcutaneous, abdomen or hips/thighs/booty. (Never mind what kind of fat—brown, white or yellow all behave differently). I recall that back before my BC dx when I was >200 lb., I spontaneously tore my right knee meniscus simply by standing up from a chair. When I saw the ortho, I asked if obesity might have caused it. He replied "We don't like to discuss that on the first date." And he never brought it up again.
Heidi is slightly hyperthyroid (explains why she lost 2.5 lbs in only a year), so she's starting on a new med (for life), methimazole. In oral form, it's horribly bitter and most cats will spit it out or spurn any food into which it's been mixed. So the vet had a pet pharmacy compound a transdermal version, applied to the pinna of the ear via a twist-up applicator "pen." When Happy was anorexic (vets call it "inappetant"), he was prescribed Mirataz, a transdermal gel version of mirtazepine, an appetite stimulant—applied to the pinna as well (but squeezed from a tube onto a gloved finger). It worked dramatically. I wonder if there's a version for humans. I will have to give Heidi that methimazole (which partially neutralizes the effect of thyroxin) twice a day for the rest of her life. A PITA, but much less so than having to administer it orally; and far safer & less stressful for an ultra-geriatric kitty than either surgery or brachytherapy. Her dementia has made her forget she distrusts strangers, and she may even believe now that she's a kitten again. (She kneads on me several times a day). The one thing that hasn't changed is her quirky pickiness about various wet foods.
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Tippy takes dl-methionine, for life, as well as miralax. He has a tendency to form crystals in his urine, which leads to bladder infections. So that dilutes his urine, but constipates him. Vet sells it monthly, but the price is too high. I bought a big container of it really cheap. She probably has looked at whether the stuff is more effective when fresh, but I note that fresh ones (large pills) are difficult to crush which triggers my arthritis. I did break down and buy prescription NexGard (which are quite expensive) this month.
After surgery I will be moving back home, to Illinois. My 95 year old aunt has been begging for me to move home for several years. I have a slew of cousins on Dad's side, and one on Mom's side down there. Tired of the winters here. I have been jealous of Jackie's accounts of the weather, although summers can be hot and steamy. It is further north than Jackie, though, about 75 miles. Really lonely for family.
I did my second batch of dyeing waffle-weave stuff, this time towels and wash-cloths. It requires standing at the kitchen sink for an hour (at least). Not good. I will be glad to be done with that project. I do note that I sleep better after less-active days. At least my bike is fixed, so I can take Tippy on walks without stressing bmy leg.
Betrayal, I hope your knees will give you a good quality of life for years to come. I already had problems with my right knee several years ago when my ankle became unstable (yes, that is a common symptom). Then when I fell, it just accelerated things. My right leg has been more stressed for my whole life because of the mild left CP.
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Hello on this rainy stormy day. The storms have moved up the east coast and it's our turn now.
I hardly recognize BCO. I went to messages as I had an unread message and it's gone. Only old ones remain. I tried to look at my "sent" message as well and there is no "sent" option.
Finding a forum is tough. Avatars are missing. What is going on!!!
If it ain't broke, don't fix it??????
I hope friends old and new are doing well.
I am a BC survivor (Stage 1, 2011) and am grateful for that. I am not sure if my 'signature' will show or not.
Since then, in 2018 I developed ovarian cancer Stage 3c very advanced. I had major surgery and chemo and it resulted in 4-1/2 years of wonderful remission and living again. I had a recurrence at the end of 2022 and surgery March 7th. It was caught early this time but I elected surgery again. Recovery was challenging - I am 5 years older now! And I have 5 more rounds of chemo ahead, once a month. Hoping for another long remission.
Jackie, I sent you a message and I think your reply has disappeared. Maybe you can find it and send again; although I have yet to find the "sent" button!
Enjoy the spring weather - even the badly needed rain!
Best wishes
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To be great, be whole: do not exaggerate or exclude anything ofwhat is yours. Be entire in everything. Put all that you are into the least that you do. Be like the full moon, living aloft and shining everywhere.
Fernando Pessoa
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Looks like it will be nice here. Sun is out although a bit muted as yet. A bit early for me to go out and really study the sky, but it should be fine.
Mary, I think this is the first time I've heard how close you will actually be to me after your move. The summers really can be un-pleasant here, but I've adjusted to them better than I thought. We 'feel' cooler where we are because there are so many trees to shade us and we don't have a lot of concrete around to hold excessive heat.
Joan — so glad you posted. I've yet to "discover" the pm's section of BC. Org as yet. I'll be looking later since I had so much trying to learn the 'new' structure I had forgotten about them. Most of our pm's should be there. Only the ones that were penned during the migration to this area were needing to be saved elsewhere if you wanted them. Not being real literate on computer I didn't try to save anything — just thought I'd pick up from this spot and go on. I will look and see if I can find my last "note" and re-send.
This new BC. Org is challenging, but I'm trying to figure out what I'm doing. I'm sort of an old dog for this, but I was able to do it before.
I don't know how long it may last, but so far, I've been able to put the quotes in here just as I always did as simple copy and paste, and have done pictures on another area as simple copy and paste. As long as that continues to work hopefully I can do all right w/o spending hours in the attempt.
Hope you are all going to have a great Saturday.
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Hi, Joan. It's great to "see" you here! I remember you very well from the time when you posted regularly. So sorry to learn about the reoccurence of ovarian cancer. I seem to remember that you have two daughters and granddaughters. I hope they're all doing well.
Thanks to a comment on another forum, I learned to click on my avatar for a drop down menu and then click on Bookmarks for my list of favorites. I had been very lost without the former easy access to Favorites. Now that access is restored.
Mary, perhaps you and Jackie can get together in person after you move since you won't be that far away. I have driven past Jackie's town any number of times on an interstate when we were driving in Illinois. I always "wave" at her!
Our departure to Minnesota is drawing closer. We plan to leave on May 21st. It usually takes us 2 1/2 days to reach Pine Hollow Resort near Park Rapids. From pictures just days ago, there is still snow on the ground in the resort and the owner isn't planning to turn the water on until the middle of May.
We have been having a stretch of beautiful weather. If summer were like this, we wouldn't have to leave.
Good health wishes to everyone.
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Hi All!
Joan, I don't think I ever "met" you, so a special Hi! I am sorry you are dealing with ovarian cancer.
I have a question for anyone who has had a bilateral mastectomy. Do you still see a breast surgeon? I did reschedule the visit I canceled with mine, but it may be the last one I go to. I don't see a reason for it as I can palpate myself and would obviously contact a doctor if there was a lump or enlarged lymph node. No breasts=No mammograms.
I don't plan to see my PL again. I am continuing to see my medical oncologist, and I am fine with seeing only him, twice a year, for all things related to my "foobs" (fake boobs). I absolutely hate my reconstructed right breast. Not even nearly a match with the left reconstruction. It isn't even "rounded" but has a flat part and a "small peak?" I try to avoid looking down or in a mirror. Sadly my breasts were the only parts of my body I liked, so now I totally hate my body, head to toe! Could be worse, so I am in full "don't look" mode.
I was able to switch my PCP to a young female doctor in the same practice. I did have to make a "wellness visit" in order to see her but I will refuse the "clock paper and other cognitive tests." I will assure them that if I feel mentally challenged, I will be the first to let them know. I didn't mention the horrific mess of an appointment with my current PCP as a reason, only that I saw they hired this new doctor last fall and that I prefer a female doctor.
I received three calls on Wednesday about my complaint about the Survivalship Plan I was sent, which stated that my team wanted me to have yearly mammograms. No one seems to know who generated that plan or why it was sent to me. I was told the oncology nurse whose signature was on the form hasn't worked for them in over 6 months?
I was also told by my oncologist's PA, that I don't have PTSD, that what happened to me was simply a reaction that "hit a raw nerve." I guess something that makes one unable to calm down or sleep for over 24 hours and invoked constant horrible memories of my first two cancer diagnoses and treatment, is not serious! The only emotional support I was offered was a local breast cancer group. I have no desire to share with that group. I have a wonderful circle of friends here and I can share feelings with you, any time of day!
Sorry I wrote so much about myself here. I did read all the comments from yesterday and today and my thoughts are with all of you!
I don't like this new website, but I do love all of you, so you won't see a fancy avatar when I post, or see my diagnoses because I gave up trying to navigate the new system. As long as I can find this group, I don't even care to look for the other topics I frequented.
Rainy and cloudy here, supposed to be all weekend. Monday may have a bit of sun, but the coming week doesn't look good. DH has his MRI's on Friday, I will be glad to see those results although his "follow up" with his neurologist isn't until September, so not sure any good will come of it.
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Mary - sounds like you’ll be close to lots of family when you move. I grew up in Indianapolis and recall how unpleasant the summers can be. But the cold, miserable winters made me long for those Indiana summers. Are you originally from Illinois?
Sorry to hear about your diagnosis Joan. I hope you’re doing well with your treatment.
Sandy - when our orange tabby cat (who has since passed) was sick our vet prescribed medication that needed to be applied to his ear and I needed to wear a glove to treat him. Can’t remember the name, but the vet said it would could get into my system if I didn’t wear gloves. It was definitely a pain, but improved his QOL.
Illinois - so glad to see your daily quotes again. I really enjoy them. Thank you.Carole - enjoy your remaking time in Louisiana. Hopefully the snow will melt in Minnesota. They’ve had some spring snows lately.
Mavericksmom - I had both breasts removed and still see my breast surgeon on a year basis. She checks my lymph nodes and my foobs. I did see my plastic surgeon yesterday for the last time. It’s a year since my last surgery and he said there’s no reason to see him again unless I have a problem.I’m still having pain in my one side, but I’ve been doing some post-mastectomy massage. He thought that was a good idea. I still have shoulder pain as well. Implants should be good for 10 years. Glad to hear that your oncologist followed up about the survivorship plan.Karen - hope you’re feeling okay.
We had lots of rain yesterday morning but it stopped by the later in the afternoon. We were able to take a walk. Today it’s overcast, but no rain. We spent the morning packing for our trip to Las Vegas. It was complicated by the cats “helping”. They know something’s up and will be disappointed tomorrow when we disappear. We have a cat sitter who will come to feed and check up on them.
Have a healthy and stress free day.0 -
Cardplayer, interesting about the plastic surgeon. I am not yet two months out from my exchange surgery. I don’t remember when I was scheduled next but I think in September. I thought 6 weeks should have been the end of the surgery follow up visits. I still get intermittent pains but that’s true with my DIEP reconstructive breast too. Maybe I should reschedule? I guess because my PS is also a lymphedema specialist I am trying to avoid further conversation with him about surgery for that.
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Yes, my PS checks around my foob and the lymph nodes.
I "invested" the first twenty years of my life there. Classmates as well as cousins.
Medical care isn't as good. My "twin" cousin had a mastectomy quite a few years ago. When she woke up, the surgeon said that no PS was available, but he left plenty of skin. She still has the skin, but no breast. Doesn't want to go through breast surgery again. Medical meccas are Iowa City, St Louis, and wonder of wonders, Mayo.
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Mavericksmom - I saw my PS at 6 months after exchange surgery and this final appointment. Same for my first mastectomy.
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Thanks cardplayer, good to know!
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Mavericksmom - sorry I got distracted and didn’t finish. He also told me what to look out for in the event of an implant failure, which doesn’t happen often, but could happen. And breast implant illness.
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