LOSE the Great News! Red Banner!

Okay. If I were King of the Forest, I would ditch the Good News! banner up top. Is a site improvement good news? Yes. But I keep trying to open various topics that are dealing with cancer, feelings, physical stuff, and all I can see is GOOD NEWS! at the top in bright red. 

Also, like and love clicks, but also sad and mad click responses. Not a care click, but a thumbs up. Love is fine too. 

Clearly indicate to newbies the "old" threads, so they're not interacting with folks no longer on the board. 

Assign female admins to below the belt cancer subsections, and have admins everyone kind of "knows," so if there's a problem, the same admins address it. 

Don't allow unregistered users to access Discussion Boards, as so much info is really personal. It's really not conducive to heartfelt discussion and sharing when anyone can come in and read, especially for the below the belt cancers. Think about it: sex, vagina, uterus, yada yada. Personal. 

Okay, that's my grouchy rant for the night!

 

 

 

 

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Comments

  • cmb
    cmb Member Posts: 1,001 Member
    "Private" board

    I found your comment to make this board "private" interesting. I have a different perspective. I didn't find this site until just after I had finished treatment, then I read posts back to the beginning of the board for several months before I decided to join as a member. If there had been a requirement to join as a member, I wouldn't have had access to the rich history of posts here.

    And I doubt I would have joined as a member since I'm not into social media sites in general. I don't even belong to the Facebook group that is specific to my type of uterine cancer since I've chosen not to be on Facebook. Although I have recommended that site to others who find their way here and who are on Facebook.

    The anonymity of the site members is important to protecting individuals' privacy. Some choose to share more personally identifiable information, while others, even after many years of posting, never disclose anything that would make it easy to identify the person outside this group. 

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #3
    Yes, Different Perspectives

    And that's fine. 

    Recently, in another discussion group in this site, a woman asked a question that nearly anyone could have responded to. It was viewed by over 700 readers, and NOT ONE responded. I take issue with that. If you are in, you are all in. You not only receive, but you GIVE. 

    I'm not a lurker online. I will read and research, and then I give what I can, as you do, CMB. Perhaps you were initially reticent, but once you were in, you have given, given, and given of yourself. I am grateful for that.

    Here I am, with my personal photograph. I am easily recognizable, and easily identifiable.  I'm not entirely shy. I do, however, have an ethos that is rather demanding of others. If you take, you give. 

    You have made a very good point, however. Maybe my mistake is in being too easily identifiable. Let me think on that. Perhaps I will become more anonymous. 

    * * *

    I've had a few hard days. My observations and what I share are always colored by my attitude. I think it's fair to share that. 

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #4
    "The" FB Site?

    I didn't know there was one related to this group? I've found a LOT of them created by women or offspring of women with uterine cancer. 

  • cmb
    cmb Member Posts: 1,001 Member

    It's true that many of the posts are widely read and not all generate responses. And it's sad when this occurs. But I think this board is better in that regard than some of the other boards on CSN that have less participation. Usually someone here responds, even if the question or comment is outside that person's experience.

    But perhaps some of those who are only readers feel as I did initially – that I wouldn't be able to offer anything unique or helpful. And I only joined when, as you say, I decided to commit to being an active participant. Not everyone wants to make that commitment or, if they or a loved one are in the throes of treatment, feel emotionally strong enough to participate.

    I actually find it more frustrating when someone joins, posts once and receives a lot of responses, only for that person to never post again. Frankly, I would have preferred for that person to just read the posts already here, since it can take time to respond to a post, especially when it's a difficult topic.

    I'm appreciative that while members can disagree about a subject, as on this topic, the discussions here are usually respectful about our differences. That's not always the case elsewhere on other social media forums and why I value this site.

    While I'll miss seeing your engaging personal photo, I do think we all need to be comfortable with the amount of information that we disclose here.

  • cmb
    cmb Member Posts: 1,001 Member
    edited November 2021 #6
    Uterine Carcinosarcoma

    The Facebook site I mentioned is specifically for women with uterine carcinosarcoma, one of the more rare types of uterine cancer, not the more common endometrial cancer. And for those women with this specific type of cancer (and who maybe are just reading this post) the link to that site is https://www.facebook.com/groups/carcinosarcoma/

     

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #7
    Oh, Shattered!

    I have the more common Endometrial adenocarcinoma, but I am so glad others have that online resource. I have joined several FB groups, but am not always thrilled with the set up. This discussion board is above and beyond the very best resource I have found.

    As I noted, I've had a difficult couple of days. I may replace my new avatar with something more engaging later (ha ha!), but let me note I am always grateful for your posts, and always so glad to "come home" to this site. It has been a huge source of comfort to me.

    When I first joined this discussion board, I felt like my cancer wasn't "good enough" or rather, "bad enough, " "unique enough" to write posts. I pushed through that. I decided I was "enough." 

    I came back in to add a note to your observation that it's hard when people just post once, then disappear even though many [wonderful] members share encouragement and information. I agree! Just last night, I noticed that a member had responded to a woman who posted in 2018, got responses, and then never, ever posted again. I think sometimes people are so "spun out" that they forget where they have shared their stories, perhaps. I do understand that horrible feeling. Yet, I do agree with you, CMB, and am always glad for your point of view and your advice. 

     

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #8
    Very emotional place

    This discussion board is for everyone.  Women who read and don't post do so for many reasons and all of them are valid.  We don't know them, and what they are dealing with.  I enjoy when I click on someones name who hasn't posted for a long time, and see that they checked in a week ago.  Everyone deals with this difficult diagnosis in their own way, and in my opinion ALL of them are welcome.  I don't have a personal photo for privacy.  If someone wants to contact a member they can send a private email.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    About CSN

    Welcome to our community of cancer survivors, families and friends! Our lives have been affected by cancer in ways only those of us who have “been there” can truly understand. We invite you to join today to fully experience all that the Cancer Survivors Network (CSN) has to offer.

    This site is completely non-commercial and provides a private, secure way to find and communicate with others who share your interests and experiences. In order to protect your privacy, you may remain anonymous in the CSN community if you wish. You control all personal identifiers.

    The purpose of the Cancer Survivors Network is peer support. Site content is contributed by its members. Their contributions reflect their own personal views, feelings, and experiences. Content is not endorsed by the American Cancer Society nor should it be accepted as credible medical information. Users are encouraged to refer to the American Cancer Society website at http://cancer.org or call its National Cancer Information Center at 1.800.227.2345 for credible medical information. Users should always consult qualified healthcare providers with questions and concerns about their medical condition.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    Thanks

    I've had a couple bad days. Maybe I should stay away for a while. 

    Take care. Didn't mean to bother. 

     

  • Forherself
    Forherself Member Posts: 959 Member
    edited November 2021 #11
    I don't think you are a bother

    I think one of the good things about this discussion board is that you can come when you are having difficult days too.   I hope your day is better!

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited November 2021 #12
    Especially come here when you are having

    difficult days! We are here for you, Deb.

    xxoo

    Denise

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #13
    Thank you, Blue and Forherself

    Yep, I can't even talk about what's going on right now. I am that deep into the depths.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #14
    Okay, so here it is

    Most of my people I talk to every day--those closest--have died. Four of them since 2011. 2011, 2012, and two in 2016. I have that one very special person left, aside from my husband. That one person has been like an anchor for me for years. Her life's not perfect either, and certainly neither is mine, but she has been as constant as the north star, really. She just got a very rough diagnosis. She isn't staged yet, but she is Birads 5, which is certainly not a good thing (breast cancer). I'm just trying to stay in "denial," which is my go-to coping skill, but I'm very sad. I want her to be okay, and I'll be here for her--and have been--nonstop and all the way. I'll do everything I can, and I'm a good person to have in a medical corner, so I know we will do everything we can. That said, I'm just kind of a messy, ill-tempered, sad person right now. I will try to control myself. 

  • Dak82
    Dak82 Member Posts: 109 Member
    It’s tough

    So sorry to hear about your friend's diagnosis. I have posted here when I've had a bad day or bad finding and have found the responses adult and soothing. I too have been on the FB ate for EC--I have the same brand you do only much more advanced--and can't totally relate because most of those women are stage 1. But the fear of the diagnosis and the unknown is the same. You are a great empathized with others. If you don't want to bare your soul on a public site use the personal messaging. I have found it helpful.

    My diagnosis has been tough for those around me because I was always the rock. I was the one who never got sick or had marital problems like others in my family; I am the oldest of a large-ish family and have the characteristics that go with that position. I find it very difficult to be the object of sympathy and what I perceive to be smothering care. I have a hard time talking to my brother because he breaks down all the time but I have got better at it. This damn disease is hard on everyone.

    You will be there with your friend because you love her. You will amaze yourself but it will be tough. I know you be what helps her through her tough days.

    Much love and hugs,

    Other Deb

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #16
    Oh, My Other <3</b>
    Thanks so much for your words of encouragement. Tonight, we went out for dinner for pretty much the first time in a couple of years. It was such a special thing for me. I am a busy person, and also cook breakfast, lunch, and dinner---and also make homemade dog food.
    I try so hard to be healthy! My thyroid has just tanked, and I think I'm feeling much gloomier than I should....but yes, my friend is potentially going to be going through a very hard time. I will pull up my socks and come out of this funk by the morning, I predict.
    Also, I began researching my paperwork again with my cancer. I found again today that every time I review notes, reports, and information, I understand more. I realized today that my first gyn onc (the one I had issues with, understatement) did genetic testing on my tumor, uterus, etc. I've reviewed all that information today and now understand some of the language surrounding my genetic mutations. My, my. How we learn. 
    And I thought it was primarily related to hormones and body weight. Nope. Anyway, I think that I tipped my own apple cart. I have such frustration when I don't fully understand. As with most women in this site, I've had such a steep learning curve.
    We all do better when we can tuck this cancer in a drawer and pull it out and examine it when we're strong enough, but the physical pain, differences, appointments, and appointment reminders keep us on a pretty tight leash. There's a mixed metaphor for you!
    Deb, I am so grateful for your kindness. I'm sorry I'm just in "train wreck" mode today. I much prefer to have a grip on this, but today I seem to be kind of a soggy puddle. 
    I also find "family order" issues so fascinating. So, of course you are a first-born. Your siblings must adore you. It sounds like your brother does. I am following you closely, and will always be here to listen and read. I just joined a FB EC group. Let's see if that is a good place for me also. 
    Much love to you too, and hugs. I got a really encouraging private note that reminded me I'm still in my first year with this disease, and honestly, five months out of radiation. It's normal to have continuing fatigue and some aftereffects of it all. 
  • MoeKay
    MoeKay Member Posts: 476 Member
    edited November 2021 #17
    When our good friends get cancer

    I'm sorry about your friend's recent breast cancer diagnosis, Deb.  I think hearing news like this about a good friend may be more traumatic than hearing it about ourselves.  I can definitely relate.  I've mentioned my childhood friend on this board a few times.  We've been friends for about 65 years.  She called me one morning and broke the news that she had just been diagnosed with endometrial cancer and was scheduled for surgery a few days later.  Coincidentally, at the time of her call, I was wearing a 24-hour blood pressure monitor.  I don't have to tell you what kind of numbers the monitor recorded during that conversation!  Turns out that after surgery, she was diagnosed with stage 4, grade 3, endometrioid adenocarcinoma.  When her daughter called me right after the surgery, I was glad that I wasn't wearing the BP monitor then, or I would have likely caused the thing to explode. 

    However, it will be 5 years in April since my friend's diagnosis and she's currently doing unbelievably well. Yes, she's been through a lot over the years, but she sent me a text from the infusion room on Thursday, telling me that her latest CT scan showed no evidence of disease.  That's two in a row now.  She is currently on Keytruda monotherapy, because she couldn't tolerate the Lenvima side effects.  Her oncologist told her that the Keytruda doesn't work for everyone and on some people it's miraculous; and that she's one of the lucky ones for whom it's working like a charm!  Her oncologist's plan is to keep her on Keytruda for another 3 years.  My point in telling you this is that there are a lot of options for your friend that were not even on the horizon a few years ago.  I know Keytruda is also used for some aggressive breast cancers in combination with chemo.  I know a woman with triple negative BC who is doing quite well on that combo several years after her diagnosis. 

    Your friend is lucky to have you and all the support I know you will be giving her!

  • woodstock99
    woodstock99 Member Posts: 202 Member
    Chnages to the site?  I se

    Chnages to the site?  I se ethe banner about chnages to the site but no detail about what is changing?  Thnaks.     

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    Thank you so much

    I am really encouraged to hear about your friend's NED status, and thanks for sharing such a wonderful story.

    For my friend, a few things are going on...she just got a job in September, although it was as a temporary, and she just recently got hired. She is very responsible, and will feel she has to work there at least three months before taking significant time away for surgery. I think there's some kind of company policy. This, of course, worries me tremendously. Fortunately, she's a great employee, and I think she's going to be able to work with her employer to get things "in place." 

    My current plan as follows:

    -- I'm going back to work as a substitute teacher so I can help her with finances as needed. My sub money, if I sub four days per month, will help out. 

    -- I may be able to take her dog in for a while, although her dog is kind of a handful, 

    -- I am going to try to "hold things together" better, so I can be a good support person for her. To that end, I need to be mindful of keeping my own oxygen mask on, if you know what I mean. I'll take a team approach with her roommate so we can support her respectfully and also keep her comfortable. 

    -- She's very private, so I will make offers to help at doctor appointments, but oh-so-gently. And I will listen. 

    My doctor contacted me last week, and my thyroid is so out of whack she's increased my Levothyroxin to 150mg, from 137.5. This may account for some of my current sadness (depression). At the end of the note she wrote me, she said, "Try to lose 10 pounds." Wow. 

    (laughing).

    Anyway, thank you <3

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    edited November 2021 #20
    Woodstock99---

    I did an interview with someone working on the site, and they'll have some like and "care" emoticons you can use on people's posts. Other than that, it looks pretty similar. 

  • woodstock99
    woodstock99 Member Posts: 202 Member
    My wish list.  I was/still am

    My wish list.  I was/still am a member of a breast cancer info/forum website and it is wonderful to navgigate. 

    If you create a post, you get a mnotification whne there are any repelies.

    It's just way more user friendly but I will take what they give us as a means of communicating with each other. 

    I do not like that on this site that posts can show up in google searches depending on ketwords. 

    So can someone clarify or direct me to privacy options on this site?  

    Thanks.