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Why Connecting with others with Bladder Cancer is Important

balihigh
2 Recommendations

I have been working on getting media attention for our picnic on July 18th in NC (By the way, reservations can still be made-just contact me!!). Yesterday the local TV station in Asheville (ABC news) called me. I wrote an email to them requesting that they cover our picnic. However, they don't work on weekends but they do want to interview me. Help! Help!! I keep telling myself that I can do this but believe me, it won't be easy. You will probably see me shaking.

As Claire mentioned in another post, they want to combine the personal interest story of people meeting online and wanting to get together along with the medical aspects of bladder cancer. They will be coming to my house and videoing me in front of my computer. I thought I might read a few things you people write.

So if you could post here how this site has helped you and what it means to your in your struggle with bladder cancer. If you are coming to the picnic, if you would have liked to have come but have other committments, or if you would very much like to meet others on this site in another gathering (I know the NE and Texas has talked about getting together), please write why this is important to you.

I appreciate all of you helping me in this.
Hugs,
Nancy

Explore topics in this discussion:

Anxiety Cancer Hernia Surgery Neobladder Pain Muscular dystrophy Lymphedema Bladder cancer

31 replies

Shiz

I stubmbled upon BCAN accidentally 6 months after my initial diagnosis. I was feeling scared and alone and typed something about bc in the search engine.

What I found was an incredible group of people who had the same fears and hopes and feelings as I had. Just being able to talk with others about similar experiences reminds me everyday that there is life after cancer and hope for brighter days ahead. We strengthen each other other during these broken days.

balihigh

Just bringing to the front.

balihigh

I am pulling this up so that I can use it in my interview tomorrow.
Nancy

balihigh

I just received another message (right here under "Summer Picnic in the Mountains") from another lady in my area with bc. She read my letter in the local paper and found me here on Inspire. I am overwhelmed that there are 3 other ladies here in this area with/had bc and the response I have had with one little letter.

It shows the work we all need to do with awareness and the potential for support groups and get togethers. There appears to be a great need for this sort of thing. Those at the picnic will definitely discuss this and pass on information so that maybe we can get more started all over the country, Canada, UK, and elsewhere.
Nancy

YvonneM

You will do awesome....of that I am sure!!!
Yvonne

Moonerj

Nancy you are so right. Like Jim, many members do not post or post every seldom. Since being involved with BCAN and assisting Karego help our new members get started, I do receive several emails from the new members. Many have had there questions answered by reading past posts. They keep up with the site daily, and are very appreciative having this information available to them.
You guys are helping members and newly dx patients that you might never hear from. But believe me, they are so thankful of you all.
Jack

balihigh

Jim,
Thanks for posting and reminding everyone that there are lots of people out there that benefit daily although they don't do a lot of writing. That really is an important message.
Nancy

Jimbo1968

I feel fortunate that I was lead to this site very soon after my diagnosis. I was completely overwhelmed initially but found alot of answers and very supportive people here. Words like cancer and chemo are a bit scary when you hear them for the first time. I know I don't post alot but I do read alot and reading journals and discussions on this site certainly helped put me at ease on several issues. It was also very reassuring to know I had a group of people that cared and had been there before.

Jim

Moonerj

What a wonderful story. I am so happy for you both, that you get to meet in person in just 2 weeks.
Darn I wish I could be there.
Caring and sharing, that is this group.
Jack

balihigh

BJ,
Thanks you so much for your very kind words. I don't feel like I did that much. As you know too, it is theraputic to share experiences and help others. After I was on the other side, I felt this great need to tell my story and encourage those that need it.
Hugs,
Nancy

BJsHere

I so love the phrase Donna49 came up with........
"Intimate Strangers"!
That says volumes for what we do and feel for each other on this site.
This is a very positive and informative site.
I have been on other sites but do not get the same sense of "family" closeness.
This is a place where so many are unselfish and go beyond the norm to help one another.

This site offers help from the patient side.
It gives us Hope and Encouragement.
It educates us so that we can stay on top of our care.
It encourages us
~ Not to allow ourselves to be put down or talked down by anyone in the medical profession.
~ be “Proactive” for ourselves.
~ seek solid clear dialog with our doctor.
If we are not satisfied with our current care, it is OK to seek new.
It instills in each of us what we already know…
Our Lives have Value and We are Important!

I am by nature a leader, independent and strong willed.
This last cancer battle knocked me down more than a few pegs.
I became weak minded and did not think clearly.

Nancy was my very first connection on another site just before my surgery.
She led me here.
We exchanged phone numbers and I called her.
I found a beautiful warm, loving voice to go with her picture.
When I first came home, she was there on the net to encourage me and support me.

I was in another hospital over New Years due to severe complications.
My next call from Nancy was when I was there.
She kept me going.
If I were to ask myself how, I would have to say by example.
She had already gone through the surgery and was living life to the fullest.
It was her positive attitude erasing my fears.
It was her love for another following her path.
It was the love and concern she showed to me.

I have bonded with this woman and feel like we grew up next door together.
I am so looking forward to meeting her.
To embrace her with my love as she embraced me with her words.
I am eager to meet face to face those that share on this site and
those that encourage others from their own journeys.
There is a bond between all of us that cannot begin to be measured.

I think it will be a time of hugs, tears, laughter, joy and
even relief.
A time to mentally build on strength in numbers.
Most importantly, a sense that we can do anything together!

It will be a time for those who are coming with us to meet.
To share their lives with those that are walking in their footsteps.
They will not be just tagging along for the ride.
There will be some benefit for them too.
People that they will be able to share with face to face.
People for them to bond with.

For those that can't be there, we will think of you.

This will not be the last chance to meet.
There will be another, I promise you that!

I cannot wait until the weekend of July 18th.

BJ

balihigh

Again many thanks to all of you for taking your time to share your thoughts. This is a wonderful site. The past two weeks have been hectic for me as I went on a short trip and I have had relatives visiting since. I am way between in reading and posting. Now I have the interview to plan for and I begin therapy on my leg which has lymphedema next week. I think it is an everything thing.

Sandra and Tom. my heart has been with you as you have been though so much with the surgery and complications. Glad that Tom is over the worst and on the way to a full recovery.

Hugs Everyone,
Nancy

Donna49

Let's face it, we know some of the folks on here better than our own friends and family. We know all the nitty gritty details about others that can't be shared with those who live with us and love us. We know and share our deepest and darkest fears as well as celebrate our small victories together.

To this end we are all 'intimate strangers'. I believe that we all truly care about others here and to be able to share in the 'real' lives of these people would be a great privilege.

Best of luck Nancy. You will do great. Wish I could be there to meet the gang!

silgal

Nancy, you are going to do really well!!! You are such an inspiration to me and a help to so many on here.... I think the combination of your experience and your listening (fingertips- eyes) "ear" will enable you to explain how the community here is so valuable (for all the reasons stated)
happy 4th and good luck

CrazyHorse

Meeting face to face to me is always better because now everybody can see each other in person. Also it makes for a more relaxing time and easier to talk then sitting there typing about a topic and more folks can get involved in a topic at one time where you can't do that online. And typing a post you are always trying to find the right words to make your point whereas in person it is much easier to carry on a conversation then sitting there typing. Another thing you can make friends online but there is nothing better then making friends face to face.
Having a support group face to face about bladder cancer most definitely would bring people even closer together then online to me that share the same problem because it is better talking to each other live and in person. CrazYhorse ):

baudine

As a fairly new member and one just starting this journey, all I can say is Tom (Nucsubman) and I are blessed to have found this site and all the wonderful caring people here. Not only did we get support in finding out about this disease from the people who know it best (others in the similar conditions), we found kindred spirits that can give us help with our emotional needs. No matter how dark the sky is for you, there is always someone else where the sky is darker. It makes you feel grateful for where you are even in a challenging fight and want to help and comfort that person you are reading about.

Since Tom is still in the hospital, we will not be able to make this picnic but our hearts and souls will be there. If you have one again next year, we definitely will be there. I can't tell you how much it would mean to me as a caregiver and Tom as the cancer survivor to meet, shake hands and give a big hug to everyone who will be there.

When I write here I don't feel as though I have been able to say enough, comfort enough, show appreciation enough. I think the face-to-face time would be so grand.

The personal calls Tom received prior to his surgery from people who post to this board is what set the stage for him to be able to go through the surgery with a positive mindset. Researching the information I was able to gleen from past experiences of others; we were able to withstand and weather this last storm with the infection fight after the surgery.

Nancy, organizing an event like this can be overwhelming. It sounds like you have done a wonderful job. Go into that interview with the confidence you show everyday on this board. You are a great advocate with a personal background with BC with a very soft comforting touch. You are special.

We love you,
Sandra and Tom

balihigh

Please don't forget the questions about why it is important to come together and meet face to face. I think this is one thing the reporter will be interested in.
Thanks Again everyone.
Nancy

CrazyHorse

Luck comes to us all in different ways. As Peter mentioned they found micro blood in his urine and that is what we all would like to have happen.
But I wasn't that lucky because my tumor invaded the muscle wall but I was lucky enough if I had not gotten any symptoms when I did it would of went through my bladder wall and my situation would have been worst.
This site for me means more to me to help others in things about BC that they don't know and I do and pass along the information I have come to learn through experience and not just something I read on the internet. Nancy you will do just fine and remember we are all behind you. Best of Luck, CrazYhorse

Together we're better - Bladder Cancer Advocacy Network Support Community

grampadonut

how "lucky"..yes i said "lucky"..that they found micro blood in urine in time to be treated
"lucky" to have a caregiver there when i needed it most
"lucky" to have a site like this to answer ALL the questions i had
"lucky" to be able to help..even 1 person going this

peter

balihigh

Thanks Lynda and Kyle. I feel your hugs and I needed them.

Hugs,
Nancy

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Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

Newly diagnosed
Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

Clinical trials
Get information about clinical trials and BCAN's Clinical Trials Matching Service which is offered at no charge.

Women and bladder cancer
Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
Presentations and slides from BCAN's most recent Patient Forum in Cleveland. Those diagnosed with non-muscle-invasive bladder cancer will be most interested in Dr. Jones' and Dr Pohar's presentations. People diagnosed with muscle-invasive bladder cancer will be most interested in Dr. Gong and Dr. Gilligan's presentations. Dr. Campbell talks about improving outcomes in bladder cancer patients, and Dr. Hansel talks about the importance of pathology in diagnosing, staging, and deciding on treatment for each patient.

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