First let me introduce myself, I am Cynthia Kinsella and I do a moderated chat for the Bladder Cancer Advocacy Network. It is available on our site at www.bcan.org we have a scheduled chat every Sunday evening at 8pm till 9pm eastern time. This chat is open to everyone who has been in anyway affected by bladder cancer and seeks support. We started the chat a little over a year ago and we have an active group. In the next months I am working on expanding the chat I hope to add a once monthly chat for different sectors of our blc family. Non invasive, invasive, care givers, upper track or advanced will be some of the monthly chats options we look at. We have people that chat with us from different countries I have one gentleman for Norway who is with us almost every week. Please join us if you can.
Another option is that when you filled out your profile for this forum that there is an option for adding your instant messengers nick names so others can find you that have bladder cancer. It gives you the option of adding your MSN, Goggle Talk, ICQ, AIM or Yahoo messenger ID; this can be a great way to network with others. You can do a private email to anyone on this forum and let them know that if they would like to chat that you are available at your favorite instant messenger.
I wish you all the luck in the world on your bladder cancer journey. You are right one of the best things you can do is talk to and be with others that share that journey. If I can ever be of any help or if you have more questions about chat do not hesitate to email me at the address below.
Chin up and straight forward
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Ive not been around for a while (busy getting back to normality) and just read your post. we have a bit in common. Im in uk, a teensy bit older than you at 43 (OK, 44 last week!) and my family also has quite a history with cancer. My father died of BC 4 years ago and I lost my sis at 38 to small cell lung. I had a neobladder "fitted" last October and it's been ok really! Much better than I anticipated. Bit of snagging still left to do but not bad at all. Ive had about 14 years or so personal experience with BC and Ive made many posts on this site - which is great - well done for finding it! - but please feel free to PM me anytime if you have any questions. I get the impression that some things are dealt with slightly differently in the US although the fundamentals seem to be the same.
I think your positive attitude will serve you well. My husband received a neobladder in October and has just completed chemo. He is becoming his usual self which is good to see. Our "happy hour" refreshment helped him feel a bit of an appetite during the long ordeal. The doctors were very encouraging of doing normal things if he felt like doing them Bud is his drink of choice and whatever I had helped to keep me a bit saner. I think it was the doing of normal things that helped us feel we had some control over our life.
We will be thinking of you and wishing you all of the best of luck. I think the live chat sounds like a wonderful idea. There can be some lonely times and it isn't easy to find the right person to talk to.
Hello again Well Rosemary I had my first installation of the week of budweiser to my bladder after I signed off from here last night... It was a fairly large dose consisting of about 8 bottles and I will confirm the theory that those who say beer is good for the bladder are correct After the second bottle my fatigue and Malaise had subsided giving me a little relief. I did have a bad cold a couple of weeks ago and the symptoms I had from the cold were a welcomed relief from the groggy tired feeling this irritating bc brings on ;D Thanks a again Rosemary for your kind words and I hope you too remain bc free and heathy for ever.
Does this site have a live chat? I can remember in 2000 when I was searching around and making posts on forums for my brother I would make a post and keep hitting the refresh for replys. I can tell by some of the posts on this forum there are alot of people that will be feeling alone and in need of company so I figured it might be a good idea to have a live chat section.... If there isn't one and others feel one would be of benefit and helpful I would be more than happy to create one just for the members of this forum where we can have a chat and a beer or 2 and anyone needing company for help can drop by. Please let me know and I'll wave my magic wand
Hello Ricky and thanks to you also for your kind words and I hope to see a post from you too saying you are back to full health with no recurrence. Now when I had my beers last night I did not have a drink for you like you are doing for me so I guess I better put that right tonight Thanks again Ricky and its great meeting you too my friend