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  • About posting concerns

    Posted by Cynthia on July 28, 2008 at 4:54 pm

    I have received some emails in the last few days from people either dealing with invasive or non invasive blc about their concerns with the recent posting on our forum. I know if one person is moved to email me there may be dozens that feel the same way or share the same concerns. I firmly believe we must face our elephant in the room as a community whatever color it is. These concerns fell into three categories and I would like us to open up a dialog and talk about them.

    One person dealing with invasive blc was scared by the recent rash of posts in the metastatic section of the forum that their hope for a good outcome was very shaken by so many seeing progression.

    You have to take a step back and look at our community. Most of people that come here and post are either in treatment, dealing with the ramifications of them, newly diagnosed, or facing a reoccurrence of some sort. Once they have moved past the crisis most go forward and back to normal life and no longer need the day to day support this site offers they do not post as often. Because of this the site does not truly reflect the reality of blc, if treated correctly and monitored the vast majority will do well in the long term. It also points out why we as a community need to stick around once we are past our own crisis to support the ones that come after us. Hearing from others that have walked the same path and are doing well is worth more than all the statistics in the world.

    Another email was from someone dealing with non invasive blc. They felt that if they posted about their concerns and fears that they would be wrong when so many others were dealing with so much worse.

    BLC has many paths and each of us have our own story. Yes most of us can not even imagine how we would handle what some are dealing with here but that does not diminish that for us all blc takes a toll. No matter what your stage or grade you still have worries and concerns that are real. You still need to talk of your fears and have a need for good information and need the validation of others walking your path. When you post about your treatment side effects, your concerns or ask questions you become a blc advocate. Most of the people that come here are dealing with non invasive blc and if they don’t see themselves reflected here they do not get the support they need. Hearing the C word in any context is terrifying, treatment dictions confusing at times, treatments are uncomfortable and have side effects and living between rechecks wears on us all. We are a community dealing with different situations but someone else’s more advanced diagnosis does not diminish the challenges anyone faces with a diagnosis of blc.

    I also received an email from someone that hesitant to post because they did not know if posting was always appropriate.

    If it is a subject you have dealt with it is always appropriate to share your knowledge. But if you are a woman dealing with non invasive for example posting in the men’s issues to a post about erectile dysfunction that you hope they do well and things start looking up……. it may not be the thing to do. Or if you have never had the need for systemic chemotherapy but post that your grandmother did for breast cancer ten years ago and you would rather die than have it personally…..it may not be the thing to do. If you wish to send someone your good wishes, that is always welcome and can be done by clicking on their avatar next to their post and going to their profile and sending them a private on site email or by posting directly to the post if it seems appropriate. It is always appropriate to give someone encouragment when they need it. There is only one category that is reserved for a specific group to post to and that is the metastatic survivor’s discussion group.

    We are a community that share a common concern but are dealing with a very diverse disease. Our challenge here is to give validation and support to all that come here no matter what their situation with blc.

    Your thoughts?


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
    Melodie replied 16 years, 6 months ago 9 Members · 13 Replies
  • 13 Replies
  • melodie's avatar

    melodie

    Member
    July 29, 2008 at 6:56 pm

    Cynthia,

    Good job of covering a subject that definitely needs exploration and discussion. I agree with Pat’s advice, “Don’t go there”! Although I loved horror movies when I was a kid, I no longer do, so I don’t view them…I am afraid of what I might see and then be left with lingering fear. When I first began to view the webcafe in April 2007 I located someone’s story about their RC…the author had attempted to put humor in her story and so I laughed very hard…she did a great job, but at the same time, the story terrified me and I could not go back and read it for fear that I would change my mind about getting an RC. Fear will always be a part of cancer but when we can keep it at a distance, we should try to do so. It can rob us of the energy and time we have right now, here, today. Whatever time I do have left, I want to make the most of it, to be the best I can be, and to make a positive difference in the time I remain here.

    I have been very blessed to have had a good recovery and just last week celebrated my first year of being cancer free after my RC last July. I recognize that others are not doing so well and my heart goes out to them…I don’t always know what to say except that “I do care” and they are always remembered in my prayers. I will always feel the need and desire to continue offering help to others in the way of support and encouragement, and when I can, even education. I am sure many others here feel the same as it is the only way we will ever be able to make a real difference and get the recognition and notice that is badly needed for Bladder Cancer. Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • momof4's avatar

    momof4

    Member
    July 29, 2008 at 4:55 am

    There are chatrooms available for all…Just set up a time to meet.

    When you enter the chatroom, on the right corner of the page you will see the words: “Chatrooms” click on that link and there are chat rooms for everyone…Just schedule a time to meet and chat away…

    I think at the moment that METs is a very busy section of the forum…very unfortunate since alot of the people that are new to METs used to belong to the invasive section…

    I remember well on the Webcafe that we had a run of surgeries for awhile too…It seemed like every post was someone looking for information about RC…Or having the surgery

    It is my hope that the METs section is not that popular, that would mean that more people are surviving this awful disease…and not progressing. No one feels special because they are there that is for sure…They would rather be anywhere else on the site…

    Life and Death is a real issue when talking about any cancer, fortunately some will never progress, and they will move on to a new normal with their lives. Unfortunately life after finding out you have METs is different than the initial cancer diagnosis…The issues are bigger, and the feelings stronger…The future?

    There is a place for everyone here…Why not enjoy it instead of bringing things here that are petty, and totally irrelevant to advocacy, help, and support….no matter what the stage…there are people here that have been there and have something to offer…

    This site is wonderful, helpful, supportive, and a lot of fun when you create friendships with others on the journey…lets live in peace here…


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • roxanne's avatar

    roxanne

    Member
    July 29, 2008 at 3:36 am

    Hi everyone,

    I know that as I first natigated this site, I only ventured into the topics that were personally connected to my situation … my sister was diagnosed with invasive bladder cancer a few months ago. This site deals with many different levels of blc and it was very nice to have the option to enter only those topics that I needed to and not to have to weed through other topics.

    It wasn’t until my sister’s recent surgery in which her diagnosis changed to metatastic bladder cancer that I even ventured into that topic.

    So, I, for one, very much appreciate having the options to explore the topics at my leisure.

    And, I say again, thanks SO much for having such an informative forum available for those who have been afflicted with this … survivors and caregivers alike.

    God bless to all … Roxanne

  • tate's avatar

    tate

    Member
    July 29, 2008 at 12:08 am

    Hi Cynthia,

    I just wanted to say I am thankful to have you and this website. I choose which topics I go to. However, I try to keep up with the wonderful people I met through the bc web cafe even if they are in the mets area because some have really helped me and I want to know how they are. Yes, it is hard sometimes because I think of these folks as family/friends. But, I want to show support like they have towards me or just like I would to my family/friends during their times of need. Even if it is a prayer sent their way or a hello.

    I am so sorry that some people have had some discomfort because I know what a Godsend this group of people has been for me. My real family and friends know that I think of you as part of my family/circle and how many of you help calmed my fears.

    I pray that those that have become discouraged will try to stick to their area (i.e. non-invasive, newly dx, etc.)and venture to other groups cautiously.

    God bless this forum and each of you!

  • 's avatar

    Guest
    July 28, 2008 at 10:30 pm

    Cynthia,
    Yes , it is all so wonderful, everyone coming together to share,,,
    soon the site will have more for INVASIVE, INVASIVE DISCUSSION GROUP, INVASIVE CHAT, AND NON INVASIVE AS THEY TO DON’T WANT TO ENTER THE INVASIVE GROUP AND FACE AN R/C..THE SURGERY IS SCARY FOR SOME AND MORE THAN THAT FOR OTHERS..Gene and I have helped many get to and thru the surgery, and we feel good about helping others.
    Look forward to new sections for all groups!! I guess this is as good as time as any, how about a discussion group for invasive, and chats as well,to discuss what we fear about surgery, special things. Gene would be glad to make the first post, it may reach others and help reduce there upmost fears about surgery!!! Then we can do chats as well..
    Today Gene had a chat with Peter, and grandpa donut, he is about to have an outside bag,,,the three talked surgery, lightened his fears somewhat we hope,’
    and planned a get together in Vegas in Oct., our prayers will be with you grandpadonut,,,and hope we will have the pleasure of meeting you in Oct. for sure. Ginger

  • Bookwriter's avatar

    Bookwriter

    Member
    July 28, 2008 at 9:29 pm

    Will and I have learned as much from this group as we did from the doctor – keep it up, Cynthia, it’s extremely important, for all of us. Of course there’s going to be problems, of course people are going to be frightened, this is an extremely serious issue and touches people’s lives in every way. You are heoric for doing it, don’t stop.

  • 's avatar

    Guest
    July 28, 2008 at 9:12 pm

    Hi Everyone and Cynthia,

    You know I have 2 cents to throw in,too….

    This website has been designed with all of us in mind. There is information on every stage and grade and addresses much of the even rare features of bladder cancer. Every stage also has top notch information for treatments and protocols and survival sheets. Any information you can’t find here can be found by other kind souls willing to research for you. This website has it all if you or someone you love is dealing with bladder cancer period.

    This website is set up to be very user friendly. I say that confidently as one who is technologically challenged. There are sections for every stage of bladder cancer or according to being male or female. We have blogs, forums, email and chat options for survivors and caregivers. You can be active on any section or anonymously lurk or even just glean information. And you can even chose to do it daily, once a week, just while you are in treatment, or for the rest of your life. And it is free :)

    What we can’t chose is what cancer we have.

    I don’t chose to read sections where I have no knowledge or experience to be helpful, like noninvasive or mens issues. I don’t post in sections or threads where I don’t feel I can be of help. My lack of reading or posting there is not indicative of my compassion for those in those sections. I feel for everyone facing any facet of bladder cancer – IT ALL STINKS!

    Almost all active website users are aware of Cynthia setting up the mets discussion area last week. I don’t believe it was created because mets is a more important or a bigger issue. I think it was done because that segment of bladder cancer is rapidly changing. It has different implications than other stages of bladder cancer and it can be disturbing if you don’t live with mets. That is why I post there – I live with mets. Before that section was created – I could either openly post in the general mets section (and scare people), email in the dark with other mets survivors, or shut up and not connect with others like me. Cynthia’s solution was purfect – mets can post and others can avoid the section completely. Thank you Cynthia!

    In closing let me say this. It is very unfortunate there has been more than a few who have recently experienced progression. I pray that those with noninvasive never progress. (Please note I use the term noninvasive vs superficial – I think superficial is very misleading and invalidating) I think all stages and grades of bladder cancer have fears and needs and should be validated. I also think everyone afflicted with bladder cancer has a place on this website. We all have choices of how we help ourselves and the others who will be here soon. I for one am grateful for the website, Thanks Cynthia and Eddie, God Bless, Holly

  • cynthia's avatar

    cynthia

    Administrator
    July 28, 2008 at 9:09 pm

    Yes that is the point all blc survivors have issues. That is why this site is here it is for all of us. There will of course always be times that one category will be busier than another it will always ebb and flow. But all of us have tools here if you have issues post them, blog them, chat about them or email about them. That is how this will grow and remain a vital substance filled site.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • webs's avatar

    webs

    Member
    July 28, 2008 at 8:44 pm

    Cynthia,
    I feel the forum is set up very well. There is a section for everyone. I have a voice in women’s, invasive, new, and chit chat. I choose to only respond there because those are the areas I have knowledge in. If something is going to scare me I don’t read it. I also choose not to respond to posts I have no knowledge of. I am an adult and have self restraint.

    Webs

  • 's avatar

    Guest
    July 28, 2008 at 7:26 pm

    Issues are still widespread….there is an Invasive Section which has always been there. The fact that many have graduated to a Met section is unfortunate but one that certainly needs to be addressed. Like i said Don’t go there!
    Pat

  • 's avatar

    Guest
    July 28, 2008 at 7:08 pm

    Cynthia,

    I agree with MARGOT,,when first joining the forum the issues were widespread. Issues were evenly divided, recently its been more of a mets forum, maybe forgetting the concerns of those not there. We in Invasive are important, we have issues as well.
    Ginger

  • 's avatar

    Guest
    July 28, 2008 at 6:47 pm

    Don’t go there!!
    I remember when i first got my diagnosis of blc..there was no forum just a storyboard. If you want to get really scared start researching on the internet…..there were times i was crying halfway through a paper and really wasn’t sure what applied to me or what didn’t. I had to come to grips with new terminology…god alful statistics which i didn’t know which applied to me….now thats scary.
    With the forum its set up to go into your own room…enter the others at your own risk. I knew and understood being newly diagnosed and i clearly understood invasive blc so there i stayed for a long time. I venture into other rooms occasionally but usually as an observer or to do research for someone.
    All this stuff is scary no matter where you are..i think the forum is set up beautifully. Pat

  • harry-s's avatar

    harry-s

    Member
    July 28, 2008 at 5:57 pm

    Cynthia – You are so right, I am one of the “others” that haven’t emailed you, but have been affected by the recent posts. Your post was very well written and I hope it will help others as well. Dealing with this is difficult. Some days I don’t want to read the posts because they upset me, but I know they are the reality. Harry and I recently had a scare of what maybe a reoccurance, but after a scope the uro said he saw no other evidence but that Harry still has a UTI which may have caused faulty test results. Still, we have an appt. with the surgeon in mid August regarding scar tissue and see the oncologist regularly…and will continue to follow-up…Thanks you for your post. I agree, with all that you said. Margot

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