Facing bladder removal surgery


#1

After dealing with bladder cancer for almost 4 years, I was having BCG treatments and they aren’t working. I am now facing the major bladder removal surgery probably in January. I am optomistic about my chances and will be talking to men who have gone through this surgery.

I was in one on-line group for bladder cancer for a while but all of the people who said they had gone through the surgery were fakers and the whole group were cancer fakers looking for friends, or selling diapers and viagra or sex clubs. I was pretty discouraged after reading the viscious messages from that group.

However, I have talked with some real people who have actually gone through the surgery and I have a lot of hope. I hope others dealing with bladder cancer find people who really have gone through a battle with this terrible disease and came out on the other end.

My doctor is good and assures I will have a life after the surgery. I am getting a lot of support from a Yahoo group and a in-person group in Pasadena. I wish there were more support groups but I guess bladder cancer isn’t as popular as some other cancers. lol

Sheridan


#2

Here is an excellent, doctor endorsed, legitimate blader cancer paitient support web site.

www.blcwebcafe.org

sheridan bladder-cancer-cpt6957@lists.careplace.com wrote:


#3

Sheridan I’m so sorry, as you know BCG didn’t work for my hubby Dave either. It has now been over one year since his surgery he’s 72 years old now and still riding his motorcycle. Was back on that bike 5 weeks after surgery. I have chatted with you before and know that your a very strong person. You have to be for didn’t those treatments for 4 years, as you know they tore Dave up and he just coudln’t do they any more and just wanted his bladder out and be done with it. He is still happy with his decision they only thing that really gets on his nerves is the sleeping bag at night the tubing gets twisted and being a man he won’t try anything I suggest to help on that lol. Yes it’s a major surgery and will be in the hospital for a while (Dave was 11 days but they didn’t give him his heart meds in icu and that made him stay there three days usually just one, i told the drs and specilist give him his heart meds and the fast rate will stop lol they did and he got out after they ran all those test lol). Again I know you hate this but it is better to be safe live without that bladder and stop the cancer from spreading. You know I had breast cancer six months after his surgery and doing chemo it’s not fun either sure don’t want you to have to go through that. With the love and support of your family and friends you can do this. If you need to chat with anyone in person I can let you talk to Dave he will be glad to chat about it.
Sharon LeVine


#4

Selling diapers and viagra or sex clubs??? Sheridan, every time you tell
this fable it grows more out of proportion. Give it up and get on with your
life. I’m sorry that you’re facing an RC, and I wish you well. Many BLCA
sufferers go on, post RC, to vigorous and healthy lives.

Crilly Butler

-----Original Message-----
From: sheridan [mailto:bladder-cancer-cpt6957@lists.careplace.com]
Sent: Thursday, November 29, 2007 12:55 PM
To: crilly@dcn.org
Subject: [bladder-cancer] Facing bladder removal surgery


#5

Crilly,

You are a strong person who is able to deal with Bladder cancer on your own without support groups and I admire that. What you don’t understand is that other people need support. The bladder cancer cafe is a DISCUSSION GROUP and not a support group. The majority of members are NOT dealing with bladder cancer as you very well know.

You are able deal with the cystoscopy exam with no difficulty and are in that respect unique. When your friends on the cafe use the “peeky Pokey” phrase you simply don’t get it - it means that they have NEVER undergone the cystoscopy exam, and since that is the major examination for bladder cancer, they therefore have NEVER HAD BLADDER CANCER. You used a lot of name calling in your last email to me and I have never used name calling until now = and I will call your peeky pokey people scum. They are making fun of people who are dealing with a serious illness and that is wrong, very wrong.

Please push your discussion group elsewhere and please show a little compassion and caring for another human being who is dealing with cancer (ME) and don’t make light of the fact that I may have to have the bladder removal surgery by calling it by your group’s cutsy name RC. I am not going to have an RC cola to drink, I am having a serious surgery. Please try to treat people with a little respect.

You are deep in denial about your group and If you delete the diaper ads, viagra ads and the sex club ads, it doesn’t mean they don’t exist. You know they exist and I am still getting at least 10 or 20 today but Yahoo automatically puts them into the “Bulk” category.

SHERIDAN


#6

The Bladder Cancer Cafe is both a discussion group AND a support group. The
members there are the most supportive, caring, and knowledgeable group of
people I’ve ever known. You say I’m strong enough not to need a support
group, but you’re wrong. The support I’ve gotten from the Bladder Cancer
Cafe over the last seven years has meant more to me than you’ll ever know.
Without them, this ordeal would have been nearly impossible to endure.

Your conclusion that a person using the term RC (radical cystectomy) is
being cutesy is nonsense. This is a term that medical professionals also
use for this procedure. Using the term “RC” rather than “radical
cystectomy” is simply shorthand, and nothing more. Your conclusion that
anyone calling a cystoscopic exam a “poke and peek” couldn’t possibly have
undergone this procedure is pure, unadulterated nonsense. Maintaining a
sense of humor about this difficult and stressful beast is essential to
keeping your wits about you. You, Sheridan, are the one who doesn’t get it.
There’s a wonderful book by Norman Cousins titled, "Anatomy of an Illness"
about his battle with a crippling disease. He came to understand that a
sense of humor is one of God’s wonderful medicines. What ever happened to
yours?

As for my compassion and caring, I have both in great measure, both for you,
and for everyone else who is forced to deal with such a persistent and
unforgiving beast as BLCA can be. That is the reason I continue to try and
talk some sense into you rather than simply writing you off as a lunatic.

-----Original Message-----
From: sheridan [mailto:bladder-cancer-cpt6957@lists.careplace.com]
Sent: Thursday, November 29, 2007 8:06 PM
To: crilly@dcn.org
Subject: Re: [bladder-cancer] Facing bladder removal surgery


#7

deleted by user.


#8

deleted by user.


#9

First of all, I REMOVED MYSELF from the bladder cafe because of the flaming messages attacking me for congratulating a member on his successful surgery, and because people attacked me for daring to ask for their support to deal with the cystoscopy exam.

I thought about quitting this group because of your hate messages and the fact that Mr. Crilly seems to enjoy “hounding” and attacking me, but I still need some support in my battle with bladder cancer, even if Mr. Crilly is able to do things on his own. If you sincerly believed anything you said in your emails about really being a cancer support group then you would try to support me in my ordeal and not attack me. I have not made any false statements in any of my messages and, unlike you, I have never used profanity and I have never wished anyone ill.

I really wish you would cease these attacks. I am having enough problems dealing with bladder cancer. If your goal is to be the largest bladder cancer group on the web, I wish you well. I only ask you to think of the people who are trying to cope with this disease and have some compassion for them. Please try to understand that this bladder cancer is a terrible affliction and I am trying to get myself ready for a major surgery that can change my life, and not an RC. I have never heard a doctor use the term “RC” for the bladder removal surgery, and I asked an in-person bladder cancer group what RC meant to them and a couple said Roman Cathlic and several said Royal Crown Cola.

I have had the courage to get through all of the insertions for exam, surgery and BCG (47 insertions in my urethra), and I am working on getting the courage to go through with the surgery. I have heard so many horror stories about men who have undergone this surgery and that why I wanted so much to have Mr. Stump tell me more of his successful surgery. But he never did respond because of the flood of hate messages you allowed on your site. Why did you allow those messages and why did you delete my very short message asking for help?

I care about people and several people have told me that my humor and positive attitude have helped them get through some difficult times, but Mr. Crilly, in an email to me, called this “hogwash”. I have wept when members of my support groups have died as a result of this cancer; I have send donations to cancer groups as memorials to my lost friends; I am a regular contributor to St. Jude’s Hospital for children.

I thought when I quit the bladder cafe that I was walking away from a group who has no heart or caring but your group seems to keep following me. Why am I so important to you? You have your 400 plus members and your design award - why do you have to keep attacking me?

sheridan


#10

To Crilly and Wendy:
What I think we should do is discuss only cancer and never mention the Bladder Cancer Cafe. We have an unresolvable 180 degree opinion of the group, and none of us are mentally ill, or out to “get” one another. Let us let cancer be the ONLY enemy. OK?

Crilly and I are dealing with bladder cancer. Let that be the only subject for discussion.

Please.

SHERIDAN


#11

To all who are experiencing Bladder cancer-treatment-operation of bladder removal- my heart goes out to all of you.

I just know that it seemed the “easy” way to go with a bladder being removed that had the cancer totally contained within the bladder wall for my husband last June. I am not saying his surgury was EASy as he lay there for a week in alot of pain, but each day got better and he now had his urology follow up to be told there is no cancer in his body now after going thru all that. I hope we keep our good prognosis…he is motivated again, and lives his life…LIVE is the part to focus on. I am the one to do the urostomy changing of his bag as he is too much in a hurry to do it correctly. It has brought us closer, and we have his life back. He has learned to deal with it and made up his mind that it is better than cancer going thru his body possibly with other procedures. The radiation up a catheter was not a choice…once with a catheter was enough for him.

We are real people going thru a REAL cancer experience, just read up on everything, talk to a good urologist, read the opinions here in this forum and make a decision only you can live with…LIVE is the important word here! Pull up the American Cancer Institute and read, read, read…doctors sometime dont tell you what you yourself can learn from others …thanks for the oppurtunity to share this with all of you…Charlene S.


#12

Well said, Sheridan! We have a duty to help and support each other, and
avoid the negativity as much as possible. I go in for my scope in a week,
with another maintenance round of BCG in January (if everything looks good
in there). I’d gone five years all clear until a new tumor showed up last
Christmas. Guess that’s why I’m a little more nervous than normal this
Christmas. I was almost at the point of taking it for granted that I’d
kicked it, but this is an insidious beast as you’ve discovered. Hang in
there, Sheridan!

-----Original Message-----
From: sheridan [mailto:bladder-cancer-cpt6957@lists.careplace.com]
Sent: Saturday, December 01, 2007 12:40 PM
To: crilly@dcn.org
Subject: Re: [bladder-cancer] Facing bladder removal surgery


#13

Hi-I wrote Sheridan an answer to the operation, RC probably meaning Radical Cystectomy, and alot of stuff concerning my husbands bladder removal and life afterwards…LIFE being the important word here. A serious surgury and a intense week afterwards getting your strength back and living…visiting nurses, and a stoma nurse with great info and shortcuts to live with, suggestions to make the “stoma” experience better. A couple of problems with leaking at night, but now hardly any, and we travel too. Take our supplies with us, and we get thru it. My husband just had his 6 month checkup…NO CANCER anywhere in his body…and he even had a tumor in his neck to be gotten rid of after the bladder surgury, and its benign…no cancer. So we are thanking “the big guy” upstairs everyday for our good luck right now.
By the way , I took the time, Sheridan, and you never got back to me. I wish you well and the greatest luck to you with your surgury and the recovery afterwards that WILL work out.
I wish you all well for the holidays too…good health too…Charlene


#14

My dear friend has asked me to do some research for her and her husband (her husband has bladder cancer and had a scraping in May and chemo and has had another biopsy and now has 2 more new tumors. There is talk of bladder removal but he is worried about the strong possibility of impotence. They are willing to go anywhere for the best surgeon and surgery. It is so hard to find out who is the best on your own. Does anyone have any advice about any surgeon who can preserve the nerve so that he will not have to experience impotence? (Of course we realize there are never any guarantees.) He believes he would like a nerobladder.

We could use any expertise. Can someone help us?

Thanks.


#15

Danjellis,

I am not sure how to contact you but if you do want some information, please email me directly at heidi90065@yahoo.com and I will answer your questions. I have been through the surgery and am OK.

SHERIDAN


#16

greetings! my circumstances have been pretty much the same as yours. i did go thru the radical cystectomy, neobladder,prostate surgery one month ago and am having some problems. can you tell me the name of the support groups you have contacted? i need to try to find out some posssible solutions to some of the issues i am having. if you want to know more about my experience you can contact me at my e-mail : sonrise3us@yahoo.com. thanks and good luck with your surgery. steve


#17

Please bear with me I was diagnosed with bladder cancer the friday before thanksgiving. he operated the following monday to find he could not “get” it all it had penetrated into the muscle of the bladder and my prostrate. he said they and the surrounding lymph glands will be removed… I started my first chemo treatment today fort wo months then i will have the surgery. no one yet has gone into detail what having the stoma will entail. any information will be greatly appreciated thanks
Mike