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Good bye from Jack and his wife. We will face stage 4 BC in a venue which allows all types of opinions to be stated. Jack & Jackie ps I hope this is not removed as were all my other notes. Good luck and good health to all
Jackie,
we all have an opinion,,,we all deserve respect for what our opinion is,,,finding fault with others opinions makes it arguementive,,,another venue,
do you know what I am saying?
Personally I wish you would reconsider,,and maybe start a discussion on your own about what it is you would like to discuss,,,about mets,or anything else,,,were all open for discussions,,,
take care,
Ginger
It is okay to have a strong opinion! The true test is allowing others to have theirs, especially when we disagree. Respect is the key word here. If one cannot participate without becoming angry, best to just skip over that discussion altogether. I know I have had to do it.
I'm so sorry you are considering leaving! You will be missed.
I understand how you feel. Please keep in touch joybobbev@aol.com. Joycee
Hello Jack. I'm sorry you and jackie feels the need to move on. Stage 4 is something I certainly don't like to think about. But the risk lies in each of our futures. survivor, shares her wisdom gained in 15 yeras of fighting this beast with nutrition and good information. others share their experinces and even their loses as our Friend mary has just recently. Others like Ron refuse to accept limitations of stage 4 and works to maintain a sane and healthy home in the midst of what I would call tragedy. Please reconsider your decision to leave. I think just by the thoughtfulness of your post you have much to share as you enter into a sort of no man's land. I am also available via email: tagmike@gmail.com please feel free to maintain a connection if you see your way clear to do that. Good luck with whatever your decision and sorry we didn't get to know you better.
15 YEAR I ACTUALLY WAS THINKING,,,how many times have we answered a discussion,,,,and said,,well,,,I would,,,,,,,,,,,,,,,,,,,,,,,,but you really wanted to say,,ARE YOU KIDDING ME,,,,,,,YOUR GOING TO WHAT!!! ARE YOU CRAZY,,,about any discussion,,,surgery,2nd opinions,whatever,,,its true,,,,we have to respect and hold our tongue sometimes,,,,at that moment I jump off and talk to my husband,,,the discussion could be about bladder sparing,,,,someone who is stage 3 muscle invasive,,,,and there going to do a diet,,,
so you say,,,,well,,,,good luck with that,,,,,when truly you want to say something else,,,,we can't control others,just state our opinion,,lets see,we probably have Catholics,,,,Jewish,,,,Luthern,,,,,,,some no religion at all,,,,,we have all formed our opinions by the way we lead our life,,,,,,whats important to us,,,,,,,,,,,thats how we form our opinions,
everyone has one,,,,when asking for one,,,be ready for a multitude of answers...respect all of them.
Ginger, you are so right! That is why we call them opinions and not facts. Some people consider their opinions to be facts and that is where the trouble starts.
I believe I am opinionated in that I am very strong in my beliefs, but I will go to the mat for anyone else's right to their opinion! I will change my opinion on the basis of facts, but I cannot abide anyone infringing on others right to think for themselves, right or wrong. If people ask for advice, they should not be ostracized.
I am sorry that Jackie and Jack our leaving. I too wish you would re-consider.
I am again confused by this site. There seems to be a lot of double talk. I read the rules. I read and re-read what our site patrol has stated to me about what bcan and inspire are, but in the end...this site is designated to bladder cancer, it's patients and caregivers. There are rules of conduct, I am ok with that.
I don't recall reading anywhere that you have to be a certain cancer stage to post here. I percieve that to be the undertone here sometimes. Its as if you don't meet a stage of cancer that the majority here are familiar with then you just.....quit posting - this site just makes them feel unwelcomed.
Common sense people, if you don't like the discussion or journal (and it stays within the inspire/bcan guidelines), don't click on it - if it makes you uncomfortable because they may speak of end of life options, then skip over and don't go there. What happened to Common Sense People.
I am following the rules, but hey, if you don't like my discussions or my posts, don't respond - pretty simple.
BRAVO, Nancy (Mendo Lady), You never cease to amaze me. Your understanding of why we are here and what this site should represent is always so beautifully put. My husband Ben is Stage IV. We need love and guidance just as much as those with less invasive BC. We are here to learn as much as we can, and I feel so bad that another couple like us feels uncomfortable here. For the most part, we have received wonderful responses, prayers, compassion and well wishes. I hope you guys reconsider. Jack and Jackie: PLEASE feel free to email me anytime at cathyashbaugh@mac.com
Cathy
Long day for you Cathy - me too, but I am sure mine was easier...Don't know what we missed today, I am sorry felt she had to delete here discussion. Feel bad that Cheyenne has been going thru months of crap here too. Do not know what the hoopla is about, don't really need the extra drama, just posting what i think this place is/should be.
Always a few bad apples, just got to kick em aside and let them be.
I too am in full agreement,but I do have one thing I would like to add,about 4 weeks ago stage 4 was
pretty much the focus,,,Michelle and Mark,Mary and Dennis,,,Cat,,,,Candon,,,,we have many mets patients,so mets patients what are we missing?? why do you feel not included,,,what can we do to change that?? Anyone of us could be stage 4 in the near future,,,WE ARE ONE,,,all have bladder cancer,,,different stages,,,different issues,,,,what can we do to help you,,,I believe Mary and Dennis had wonderful support,,,and also Michelle and Mark,,,over the top caring ,support,,,,prayers......what are we missing? Ginger
I don't think we are missing much, we respond to everyone as far as i can see regardless of how difficult and sad the news may be. Things cannot be worked out if people quit talking, and just walk away
Nancy
Ginger, Nancy. I have NO idea what I missed this weekend, but I too am saddened by the loss of more "friends" and especially hurt by what Cheyenne has had to deal with. He is ALWAYS there to offer great information, hope, and a smile along the way. Sorry Chey....
Nancy, you are so right, why the DRAMA???? If a discussion isn't for you, don't respond, and don't continue to read it.
Ginger: Yes, the caring here is "OVER THE TOP".
Cathy
Cathy
Hey Ginger its past my bedtime, either you are a night owl or you are yawning at the keyboard.
Don't know what I missed today, Kinda of glad i did.
In response to your question, you can't put your finger on it. It is a feeling of welcomeness. It is a feeling that a cancer patient can only understand. A place that they can log onto that is theirs. Where they can keep up with the friends that they made thru their journey and possibly help a newbie with some important information - it is not a thing it is a way - it is a safe place - it is a feeling of belonging - it is a feeling that they are important and what they have to contribute can be life saving to someone else.
It is not always about a prayer chain or a band wagon or a picnic, its about someone who doesn't get visitors anymore, still talk to folks that genuinely care about them
Thats it for me
good nite
Hey,
I got it,,,we do that here,,,when no one visits,come here,message someone,call my husband,,,I always give out his cell number,,,my being here is becasue of him,it has drawn him out of the closet,,he speaks to many believe it or not,,,if you are alone,,,and no one comes,,it can be devastating,,,who likes silence,,,,not me......I see your point,and its a good one,,,and I respect it,,,,glad your here,,,
Ginger
Thank you all for your kind and varied opinions, we are grateful. Frankly, in responding to "Mary" we were just expressing support and acceptance. It is sad to us that somehow that was perverted into antagonism, but the truth is that it was. In re reading everthing, I guess it came down to "moral judgments"...not something we felt we had a right to make. I don't feel free here where the "powers" edit based upon what I was told that I was too "personal". Isn't that what this site is about? Being personal isn't dangerous, it is something everyone in this site has done. My husband and I have embrassed cancer as part of our lives. We are blessed with wonderful friends, family, children and most of all each other. We have such respect for our marriage and the sanctity of it after death, but most of all we treasure each other so much that we wish smiles for each other no matter what happens. Good Bye to you all Jackie
I understand this completely. I'm still quite upset about having one of my posts (a movie of my two year old daughter) deleted without anyone from inspire contacting me before, or after, or giving a reason. The movie clip was hosted and linked AT A SITE RECOMMENDED BY INSPIRE ( yahoo video) WHEN THEY WERE ENCOURAGING MEMBERS TO SHARE PERSONAL HOME MOVIES. I HAVE NEVER POSTED OBJECTIONABLE MATERIAL. I do not appreciate that type of administration and since that time I have chosen very carefully what I share and do not share on this forum.
I too am stage 4 and have exhausted all treatment options. My focus now is almost entirely on managing the pain that accompanies end stage cancer (that and trying to keep our heads far enough above water to make it through another winter), as well as my duties as a single parent of caring for my two year old daughter. My heart goes out to you and I wish you peace.
I hope you will please contact me at my email: loonym at yahoo dot com
I am so sorry to hear your saga continues, but happy to see your post, You have been on my mind since I saw your first post about your circumstances. You are a brave soul with a huge load and you have my utmost respect and compassion.,
Nancy
We have bed times???? I have missed something, but appreciate your post
Hi Jack and Jackee,
I am so very sorry to see you leave. Please reconsider. My husband Ed is also stage 4 bladder cancer with mets to his liver. There is not a day that goes by that we aren't scared about what lies ahead. Every time I have started a discussion or journal everyone has been so wonderful, thoughtful, caring and kind. I feel as though these are all of our friends and family and we all really do care about each other and wish only the best for each other. Ed and I have only known for a month that he only has a short time to live, unless the chemo does it's work and Ed goes into remission. We pray every day for that to happen. Give us another try and start a discussion and see what happens. Ed has chemo today and that will end round 2 hopefully. How are you both doing and handling everything?
Much love,
Candon
Sorry, this discussion is closed to replies.
Sorry you are leaving and extra sorry that your choice is based on “opinions“ or censorship. This site has a depth of knowledge that none others have. I know I've been to them all and only remain active in 3 with this one as my called home. There is a delicate balance that each of us as we write, from time to time, wonder away from. It is very easy to get caught up in what I call office politics. And even easier to state something that is taken offensively by others. But the bottom line remains the same. We all have had cancer in our life and working together sharing our experiences not only helps us but that new scared individual that shows up for the first time. Reading your post could scare some of them away and make them become leery of asking the first question. If you really feel that you have to leave that is your decision. I would only suggest that you hold back and reconsider. Something’s are just to valuable to throw away.
Al