BLADDER CANCER Should Be the FIGHT . . .

• By Ciboney1
• Posted October 27, 2009 at 11:29 pm
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BJ and All:
I think that everyone should read and re-reread this post. Extremely important message has been presented here....
Respect all ideas and all people. For everyone has had different aspects to make their life unique and their ideas unique. So someone expresses themselves differently.. that is why we are not all the same and boring.. We are unique and should be treated honestly and fairly..
I am saddened by the members who are no longer participating for whatever reason. When I joined it was much smaller and now has grown but we must be toleratant of those we don't agree with and respect all...We are here for one cause to fight Bladder Cancer and for each of us have an easier journey thru this trip...

I am the one who recommended this post..before I had time to respond to it.....

Sincerely,
Arlene

• By roadrunner
• Posted October 27, 2009 at 11:52 pm
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Heres my two cents,,,
I agree with some but not all of the above post,,,
I do think its time to reunite, not necessarily make alot of changes,,accept what one has to offer, whether its
specifically relates to there problem,we can always accept there good wishes,,,respectfully.....everyone have a kind heart, we caregivers sometime speak for our spouse, as they may not have the confidence to share, don't have the right words.
As a couple,if you are a couple,you walk this walk together,,hand in hand,,
We to should all walk together, be accepting of others, and move on, remember we are all ONE,,,,
same goals..beat bladder cancer,bring it to the eyes of others who aren't looking for it,,,and spread the news....were here....what can we do for you.....
Caregiver .patient....family members.....
goal to get Nationally Recognized
WE MATTER TOO!!!

Ginger

• By jmch
• Posted October 27, 2009 at 11:53 pm
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thank you. thank you very much.

• By BJsHere
• Posted October 28, 2009 at 12:04 am
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I am not sure what happened when I put the post here
but some of my words are garbled.

Something that I thought of after writing this is...
When someone is posting, you can go to their profile and see what they are about.
Before commenting to the existing post ,
view their profile for other writings, read them.
This can give you an idea of what they might be about.

It may help not to judge them so quickly.

• By EricAndre
• Posted October 28, 2009 at 12:12 am
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Hi BJ,
Girl we love you. I wrote you a long post but I lost it.
Anyway yes some are not equal. When we write in a public site such as this one we expose ourselves to all kinds of weird responses. Basically I never had a bad experience here Once I did not provide the answer expected so a post was deleted. No big deal for me.
Overall this site has been super great. But I understand that at time we can take some comments at heart.
But as a rule any non intelligent comment should be ignored. There is no need to spend energy to correct somebody that supposed to be self correcting.
WHen I joined this site early this year I found that most member were great with humor and love. The people involved know who they are (You're one of them). But if things change that's fine. We shouldn't change.
In other word we should remain ourselves despite external conditions. Example: I came in the US an am now a US citizen since 1979. YEs I am proud of it but I am also French and pride of it too. I am not 50% each but 100% both. What I am saying is that change make us grow. We need adversity to live and grow.

I am in contact with Kathy, my wife and I are writing a song about her. I will post it on this site when it is recorded sometime around Dec 2009.

Sorry I don't have any suggestions. That's what happen when you live in the clouds. Probably because when I see a problem I first look inside for answers. I have been very lucky thus far this way. This is my way it is right for me other deal with problems in their way. As long as I we are allowed to live the way we want, we shall have peace forever.
But I am sure some will offer great constructive and intelligent suggestions.

Be well, and thanks for this great post

EricAndre

• By joybob
• Posted October 28, 2009 at 1:33 am
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Well I came on just about all this stuff wsas happening, and frankly I was surprised. I was thinking I am going out of my mind and need help and I come upon pettiness. But we all must think, where is that person coming from, what pain is he or she suffering, we don't always know why people do things or say things. I try not to judge anyone. I want help and so do others. My husband refuses to talk about this or read anything. So I have to do it. It helps me and others have come to my rescue many times these few months. I think we just need to get back to the purpose of why we are here. Some come and leave after they are better or pass on. This is going to happen. It's a fact of life. We must face everything head on. Help all members regardless of where they are in their illness. I may need more help or I may go also, but the group goes on helping others. For some it is too overwhelming and tghey leave for that reason. Some take a break and come back. I hope I am there to comfort anyone who needs a kind word or encouragement. We are closer to some and not others, thats ok. This is real life. We are all not like will rogers, who never met a man he didn't like. Thats ok, too. If you don't like a post or person, skip over it. If someone enters your heart in some way thats fine. I still keep intouch with mom of five. WE laugh, we cry, some bond, some don't. Let's just be there. I really think I am getting more like Cheyenne everyday...I go on and on. Joycee Now don't take that as I am picking on him, he is my friend, but he also makes me laugh with his long posts.

• By Annasvenska
• Posted October 28, 2009 at 8:16 am
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Thanks BJ

I don't read all the posts (I don't have time unfortunately) but as a foreigner I knwo that I have a little bit different way of expressing myself as Swedes are much more direct and even though I have been here for almost 17 years I still am fairly direct.
I also believe that when you take away the element of non verbal communication as we do here online that leaves a lot of room of miscommunication and interpretation that could be based on what ones own expectations.
I whole heartedly agree with BJ that we are here to support one another and that there should be enough goowill here to allow members to have a"bad" day.

I personally have only experienced amazing support and am immensely grateful for all my friends here.

Anna

• By SilverGrizzly
• Posted October 28, 2009 at 8:46 am
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As a newcomer I do not understand all that you are responding to, BJ. In fact I'm pretty clueless because I have not read the negative posts, and not experienced things being deleted.

However, the compassion with which you write your ideas comes through very loud and clear. And compassion is what I have found so much of here at BCAN. It has gotten me through the most difficult three months of my life.

The site is so unique, in that it really creates a community because of how it is laid out. It is so much different from just joining a listserve, where the emails come to your regular inbox. There are so many options here, that allow you to do so many things above and beyond just posting a question. I am astonished by how well it is working, and grateful for the moderators who help out us new people as we try to get our footing in this complex site.

But there are certainly problems, as evidenced by what has been going on. But since I do not understanding the basis of the controversey, all I can do is respond to some of your well thought out suggestions.

I think your idea of including more topics to chose from when you are posting is an excellent one. A number of my posts have not fit the existing categories, and I would have appreciated more to chose from.

It would definitely help me to see whether the person writing is a survivor, caregiver, or whatever. As a new person I do often get confused by all this, and it does make a different as I am reading the post, knowing this information.

And yes, an easier way for confused newbies of finding previous posts would be very helpful. When i first came to the site, I knew NOTHING about bladder cancer, and was so overwhelmed I had a hard time navigating to basic things on the site, let alone finding older posts with helpful information. It wasn't that they weren't there, but it was me who was so upset I couldn't cope with finding them.

Thank you, BJ for starting such a helpful discussion. -Jan

• By lsh
• Posted October 28, 2009 at 9:16 am
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As usual, you have some really great suggestions B.J. Having the information about whether a person is a survivor, caregiver, etc. by their photo or at the bottom of the post would be really helpful. Also your ideas about ways to find old posts would be helpful. I just want us to go back to what we are about...helping each other. You are right about North Carolina...you had to be there to feel the magic. Hoping it is an annual thing.

Lynda

• By Kyle-MO
• Posted October 28, 2009 at 9:43 am
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Hi BJ,
This is a very good post with alot of good ideas !
Thank you for posting ! Sorry this is so short, but I am about to lose internet service for the rest of today, and maybe tomorrow, as we are switching to DSL.
Take care my friend,
Kyle

• By Shiz
• Posted October 28, 2009 at 10:34 am
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BJ....thank you for your thoughts and suggestions you are truly an inspiration to me.

We have to remember we are dealing with opinions and emotions. Most of us are not professionally trained except for the school of hard knocks so many of the opinions are born from emotion. We think we know and we end up talking about stuff we only partially know. I think BJ's idea about reading a person's profile is good but if you're like I am, there is so much going on in my head and around me that I don't get far into the details.

I also think many here use these discussions to substitute for conversations with their physicians...not such a good idea.

Let's keep sharing our experiences, love and respect and let the professionals do their life's work. Venting should be allowed. Personal attacks should be disallowed with the offender 's privileges suspended or revoked.

• By robm
• Posted October 28, 2009 at 10:40 am
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BJ -
i apologize in advance if i step on anyone's toes -
having cancer puts you in of the loneliest positions there is - whatever stage of your disease - we're all in the same boat - and we need other people to relate to - i appreciate the way this site is set up because i've gotten to "know" all kinds of people - and i value their thoughts/opinions whether advice is being offered or just well wishes - caregivers benefit greatly also - my husband didn't realize why i get so wingy dingy before/during/after my 3 month check ups UNTIL he spoke with a fellow survivor - EVERYONE can learn so much - and it's all right here - i would like to see things left as they are - but whatever happens i will continue to check in everyday - thanks - all of you guys -
WITH RESPECT always - rob

• By jj803
• Posted October 28, 2009 at 11:20 am
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Hi All,

Thanks BJ for reminding us all that the fight is BC and BC unawareness. Also thanks to all who have made thoughtful responses to this post. I must say that in my naivete, I believe that each person on the site and each post is a sincere attempt to either obtain information or support or give information or support. Rarely we lose sight of that and lapse into personal issues and I agree this is not the place for personal bickering. Sometimes posts are blunt and seemingly unemotional and very directive (could be interpreted as judgemental). I naively believe that these are true attempts to help someone. Not my style as I think there are as many ways to approach our bc problems as there are bc patients and just because you went to the so called best center does not make it the best for you. Nevertheless, I still believe that the intent of the directive comment was an attempt to be helpful. I think you most important point is that we each deserve respect (survivor, caregiver, interested friend doesn't matter). We are in the end here to fight bladder cancer. Best wishes to all,

JJ

• By loonym
• Posted October 28, 2009 at 12:15 pm
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Stage 4 scares so many people that I think it's hard to get anything except half-hearted sympathy, although privately I've had some great friends for support.
People don't want to hear about how I wake up in the morning with a morphine hangover and pain that incapacitates me. They don't want to hear about my neck and back muscles screaming from sleeping in a recliner, even though it seems to be my only relief from the debilitating lymphedema in my right leg. They don't want to hear about a solid mass so large that it has outgrown my entire bladder, or about the severely painful bowel movements and bladder spasms while voiding my bowels where I emit large volumes of blood and clots from my penis. They don't want to hear about the massive volumes of morphine (700mg++) I take every day that barely scratches the surface of my pain. They don't want to hear about the dying guy raising a 2 year old girl on his own, barely scratching by on welfare and food banks, and the broken down jeep that we have to rely on for our life line to the world, or the mountains of debt I've incurred while trying to keep pace with the cost of being sick. Or the hundreds of dollars I have to spend every month on gas chasing prescriptions, ostomy supplies, and doctors appointments. People want to hear, oh, I had my bcg, it was a little uncomfortable, but I'm coping. They want to hear, my RC was a huge success and I'm on the road to recovery. They want to hear, I had my one year and got the all clear, YIPPEE!. Well none of my stories have happy endings. My life, long before I ever got bladder cancer, has been a series of one tragedy after another, since I was 3 years old. I have never had happy endings, just let down after let down. Just when I think things may for once be looking up, I'm dealt another catastrophic blow. It's been like this as long as I remember. If I was ever to write my life story, noone would believe it. They would say there is no possible way one man can have that much sadness and disappointment in his life. That's why I hesitate to tell too much because even though true, it's all very incredible. I haven't posted about my current situation in much detail because there is simply no good news and it's evident that people who populate this forum don't care to read about misfortune. I recently came extremely close to having both my electric and my phone/net disconnected because there is simply not enough money for everyone every month. If I showed you a breakdown of my monthly income and my monthly bills you simply would not believe it was possible. They are not even close and it has gotten far worse in the past year because of the unbelievable cost of being ill. I had to start relying on my credit cards in a futile attempt to keep us above water and I'm certain most know that this never ends well. If I *poof* out of here someday, it may not be because I succumbed to my disease, but rather because I was swallowed up by crushing debt.

• By BetsyMae
• Posted October 28, 2009 at 1:40 pm
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Well said BJ!

Betsy Mae

• By BJsHere
• Posted October 28, 2009 at 1:41 pm
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I am extremely proud of the posts!

You are reflecting and coming up with some great comments and ideas.

That is what I wanted to do... get people thinking.

I think that in the new topics there should be one titled VENTING...
A person could vent all they want.
If it was just for them to write the words,
maybe the words wouldn't be read,
maybe there would be no commnet,
but there would be a place here for them to do that.

Caregivers~
A very important role in the healing process.
Sometimes, the only connection to their loved one from people fighting or surviving.
I recognize that they become the eyes and ears.
Caregivers Corner...
Would allow caregivers the ability to share with
other caregivers the good and the bad.
Those that were not caregivers still have the opportunity
to read and see what the other side of the road is like.

Journeys End...
While loonymn, may feel that no one wants to read about his dying...
or, his daily problems,
having that catagory would allow him the ability to write.
Expressing ones self and possibly deal with it a bit better.
For those of us curious, if you will, to our own future time,
it could allow us to get some insite.
Insite that just might help us with various things that might come up.
We learn and we share.
It can allow us to let the person know we are there.
We can't change things but we can continue to be supportive.
Even if it is only in spirit.
If a person is alone, and has no one to share
this allows them an avenue to do so.
The opportunity to share with others that understand or are trying too.

SilverGrizzly, cited that there were a few times that what they wanted to write but couldn't find a suitable catagory.
I have also found that to be true.
A few more topic selecitons couldn't hurt.

I know that BCAN will take the comments here and review the ideas.

Please continue to think of some positive suggestions or ideas that would benefit all.

We do have a long road ahead of us to make the public AWARE that WE EXIST and that BLADDER CANCER is SERIOUS!
That is the battle.

We need to continue to stay positive and not let personalities
or misunderstanding cloud the good being done here.

To all, thanks again for being open minded and offering
constructive criticism or new and useful ideas.

• By LadyJane123
• Posted October 28, 2009 at 1:48 pm
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I WANT to hear about your stage 4 cancer , I WANT to hear about how you are doing although I know its not going to be a positive response, I want to know how your daughter is doing, I care about what is happening to you.
I read your posts, I think of the situation you are in, I think of your daughter and what is going to happen to her.
I realize that people are dying from bladder cancer. Do we praise people when they have had success, yes we do. And I know that I have empathy for those who struggle daily, hourly or by every minute.
I would like to feel that those who are in the final stuggles can come here and vent and feel like they have kind ears and virtual shoulders to lean on.

Each person here means something to me. I am a caring person and I am here for a reason. To get support and to lend support.

Together we're Better

You and your daughter are always with me loonym.

• By Shiz
• Posted October 28, 2009 at 1:52 pm
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One more thought on general guidelines

Keep it clean, keep it civil, keep it truthful, stay on topic, be responsible, share your knowledge, and please suggest removal of comments that violate these standards.

• By jmch
• Posted October 28, 2009 at 2:13 pm
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I would respectfully disagree with Shiz... suggesting removal should be used with caution. 'clean' 'civil' 'on topic' and 'responsible' are likely to have a broad range of interpretation. Pulling posts seems to have created some of the angst here. I am not saying nothing should go, but hoping we can have some generousity of spirit and patience. JL

• By cat22
• Posted October 28, 2009 at 2:43 pm
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I'm with you, Lady Jane. Loonym deserves to vent here just as much as anyone else. If someone is sensitive to Stage IV posts, they simply need to pass them by. There are many others that will be here to listen, and offer their prayers and love. Thank you again, BJ for getting this discussion started.

Loonym, you know I think of you and Annabelle often.

Cathy