Why Connecting with others with Bladder Cancer is Important

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

By jj803
Posted July 3, 2009 at 11:07 am
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Hi Nancy,

Although my story has been kind of boring with lack of complications, I think the value of this site is the very real connection that we have with one another. People sharing their medical and emotional ups and downs and getting responses in terms of what has worked for others or just emotional support. What has impressed me the most is that almost always, the final emphasis on medical problems is to make sure your own physician knows the problem and has responded to it in a way acceptable to you. Thanks for you efforts, not just in putting together the picnic, but also in the awareness raising for bc. Wish I could be there. By the way, you'll be great in your interview.

JJ

By roadrunner
Posted July 3, 2009 at 11:54 am
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The day of the diagnosis,,,,,,,,,
reaching out to others was so important, you don't feel so alone in the journey to be cancer free,
our first encounter was with Zack, we spoke to him by cell phone,,he lived in California,clear cross the country from us in Cleveland Ohio,,,facing loosing your bladder is devastating,,he reassured us the surgery is the only way to get rid of the cancer,,,,so we proceeded,,then reached to others through surgery and recovery for help,its the only way..
Our friend Zack passed away,he was in his early 50's,,,on June 27th there was a memorial for Zack,,,
for him metastisis took his life,,,still we will never forget his words of wisdom for us.....
Ginger

By Keith1
Posted July 3, 2009 at 12:00 pm
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Hi Nancy,
I really wish that I could make the picnic in NC. You couldn't have picked a better area.
We are planning on a meet in the NE, most likely in Rhode Island.
When I was diagnosed with bladder cancer in Dec 1995 I looked for information and someone to talk to about it. Nobody and little info is what I found. I had tumor removals and biopsies along with the dreaded BCG treatments for the 1st 7 1/2 years. The cancer cleared a couple of times and came back over that time. In May of 2003 when the cancer came back for the 3rd time I had a radical cystectomy and neobladder. Still no one to talk to about it, so I had to still go it alone. 7 hour surgery and 7 days in the hospital and dignity was out the door. Recovery was slow and long complicated by my other "demon" muscular dystrophy. But cancer free at last.
Check-ups over the next 5 years were many. On the 5 years check it was found that both kidneys were dilated. The surgeon thought that the cancer was back. Tests for the next 4 months revealed that I had scar tissue in both ureters. In Sept of '08 I had a revision of the neobladder and ureters. Another 7 hour surgery and 7 days in the hospital. I found out later that they didn't think I was going to make it, but I fooled them. Days later I found out that there was still scar tissue in both ureters and I would need more surgery. After getting some strength and weight back it was done again in March of this year. This time 6 hour surgery and 6 days in the hospital. I have left out the trips to ER and the hernia surgeries that can also complicate bladder surgery. I know this story is too long to do anything with, but it's my story.
I am thankful that I have found a family to talk to at BCAN and helped me thru my 2nd repair job. I wish that I had found you years ago. TOGETHER WE ARE BETTER! LIVE STRONG!!

Keith

By Moonerj
Posted July 3, 2009 at 12:17 pm
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What BCAN and this site has done for me.
Gave me a thorough understanding of my disease, from understanding my dx, understanding BCG treatments, understanding that I was not going to die from this cancer. Taught me the questions I should be asking my Uro and the hospital staff. Assurance that getting a 2nd opinion would not hurt the relationship with My Uro. Finding out I was not alone, with all the side effects, and anxiety that goes with treatments and cancer.
But the most important, is the caring and sharing of the people here at BCAN. You get to talk to people that understand all phases of bladder cancer, especially the emotional part. Family and friends are great, but they usually avoid discussing the disease, because of the lack of knowledge of bladder cancer, and the emotions thinking their loved one might die.
Made me aware of all the work that is needed to make the general population, and GPs aware of bladder cancer. Early signs of this disease in females is taking far too long to get a Uro involved. Finally making friends all around the world, sharing our daily lives, with people that we have so much in common. Talking on the phone or meeting in person. Getting the enjoyment of being able to give back, when so many helped me.

I hope this helps Nancy, you will be great at the interview. I am so proud that you are getting to be interviewed by a TV station.
All the best,
Jack

By PatB
Posted July 3, 2009 at 12:19 pm
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Nancy -

Well, I can't necessarily agree with JJ -- that having any type of cancer is BORING :-) Dramatic and scary yes, boring NEVER. My favorite adjective with the disease is RELIEVED. That's what the board and people do for me.

They help me to know I'm not alone, that others share the misery of the disease and that every now and again, you can return the favor of helping someone to relieve their pain and anxiety.

I have had nothing so dramatic or serious done as Keith or JJ or Nancy but in our own personal experiences -- ANYTHING done can be scary and warrant other's support and the perspective of what other's have endured often gives me the strength to do what I must to get cancer free. Truth is, I'm not sure how people actually survived without anyone to talk to. Keith, you are one tough cookie. I am pretty sure I would lose my mind.

It's a scary place to be -- alone and with cancer. Here's hoping no one here EVER has to endure that.

Pat

By roadrunner
Posted July 3, 2009 at 12:34 pm
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PatB,
I think jj feels alot like my husband and I do,,,we were fortuneate to be sent to all the right places,all the right surgeons,made it through surgery with many small issues but nothing like we have encountered here,the stories of how some have to climb larger issues and complications,,,we all go through the emotional stress,,,once you conquer that and move forward,,,with the help of others you can win,,,,our case although extreme being stage 3 was serious of course,,,but our plan worked out well,,,boring compared to what some have experienced,therefore our guidance hopefully for them to be on the right track,,,,,find all the right options for a successful outcome,,,,I think thats what he meant,,,,ginger

By balihigh
Posted July 3, 2009 at 12:54 pm
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Thanks for all your help. The stories are very interesting. I knew I could count on you!!

Ginger, along with working at the computer, they want visual images and I thought I could be putting the brochures in the bags. That has the BCAN logo and is colorful.

BJ, I will also show your bracelets that you are making for everyone. This definitely proves how much we think of each other.
Hugs,
Nancy

By Kyle-MO
Posted July 3, 2009 at 1:40 pm
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Hi Nancy,
I have great respect for those that had to start this battle with little knowledge, or very little support.
This BCAN, and Inspire community has given me so much knowledge, and peace of mind in my diagnosis, and treatment, and is such a valuable resource that can't be matched anywhere else I've found. I appreciate everyone that makes up this community so much, and will always try to be an advocate to help others just beginning their journey.....Kyle

By lsh
Posted July 3, 2009 at 1:41 pm
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BCAN and this site helped me to handle my fear. I have said before that I was praying everyday to The Lord to help me handle my fear and He sent me this site. Learning more about my disease and about the experiences of others was a big piece of this for me. Also, being able to encourage and help others who are walking the path that I have walked is huge for me. I can't wait to meet all the people who have helped me through some really tough times!

Lynda

By Kyle-MO
Posted July 3, 2009 at 1:55 pm
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Oh, I almost forgot.
Nancy you will do great, no doubt in my mind !
If I was able to make the picnic I would be giving you a big hug personally, but I guess a internet hug will have to do. ((( Nancy )))

Kyle

By grampadonut
Posted July 3, 2009 at 5:57 pm
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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

By CrazyHorse
Posted July 3, 2009 at 7:55 pm
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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

By balihigh
Posted July 4, 2009 at 7:17 am
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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

By baudine
Posted July 4, 2009 at 8:45 am
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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

By CrazyHorse
Posted July 4, 2009 at 9:22 am
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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 ):

By silgal
Posted July 4, 2009 at 9:37 am
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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

By Donna49
Posted July 4, 2009 at 10:50 am
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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!

By balihigh
Posted July 4, 2009 at 11:15 am
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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

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