Can we have a forum for "older" people with bc?

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.

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

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.

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.

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?

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.

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
Joan

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.

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.

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.

Mavericksmom - I saw my PS at 6 months after exchange surgery and this final appointment. Same for my first mastectomy.

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.