Living with stage IV

Ed,

If you scroll up to the top of this screen, next to you picture you will see "My Profile". Click on that. When you get to the Profile screen, go to "My Profile Info". Scroll down and you will see the "Signature" block. You can enter info there that comes up whenever you post.

Regarding questions, it all depends on what YOU are comfortable with. Keep in mind that you are not the first person to have the question, but you may be the first one brave enough to ask it on the forum. That's generally a good thing because you would be surprised how many people look at these posts but never sign up at the site for whatever reason. These are people with current or past bladder cancer and caregivers of people with bladder cancer. So the best way for the most people to learn about all of this is for people to ask lots of questions and for others to answer those questions as openly and honestly as we can.

However, many people get pretty shy about things such as continence and sex. I'm not very shy about any of that so I tend to be pretty open about everything. I'm not here to impress others. I'm here to learn and to help others learn as much as possible so they feel like they have some sense of control over their situation and so they can get better care and hopefully get cured.

So....to help others more, open questions and honest answers are best. But, if asking a question or disclosing information makes one uncomfortable, then the private email (sharing of personal email addresses and communicating that way) or phone number exchanges and having discussions are the way to go.

Don't put those in the forum though. Send them to people via the Private Message function. Some people farm sites to get email addresses and phone numbers so you don't want that info publicly posted.

I will send you a private message with my contact info.

I would be happy to chat with you on the phone or discuss via email any questions/concerns you may have.

I will answer your other question (about sheets) in another message. What I'm going to do though is post this over in "Invasive Bladder Cancer" because this isn't really related to the "Living with Stage IV" thread.

That way it's easier for others to find in the future. It's also not related to Metastatic Bladder Cancer.

Mike

Hi Mike

I've noticed at the bottom of most posts from forum members you all have your stats..is that entered as part of your profile?
I have a question..when one has personal questions do they usually go to various members email to ask or are most people posting those more personal questions here?
I doubt I would have more questions than what many of you would have already had answers for. Here is a light one. Since I'm going in on Nov 19 and probably returning by the end of the month..there are certain preparations that need to take place. I guess it is time to loose the satin sheets..silly question..yet it so hard to adjust my mind around. What do most people do..rubber of some sort? Can't believe I'm writing this.

Ed

Ed,

So glad to hear you are feeling that way and were able to answer your friend that way.

This forum was a life saver for me also. It's one of the big reasons I'm still here trying to help others the way I was helped. To paraphrase the inverse of a Pogo quote, "I have met the support group and it is us!".

The big long name (abbreviated to VIP) is the type of pouch they did for me. It was first done in Italy which is why it has the Italian name.

Mike

Hi Mike..Way to go! I appreciated reading your helpful tips and yes I will be receiving the nerve sparing procedure..a must! I'm finding #6 the easiest instructions to follow lol. I have a surgery date as of yesterday..it will be done on Nov 19. There are times when I can't wait to have it all done because of fears of it spreading, than on the other hand I'm terrified! If you don't mind me asking Mike..are you still having complications? I noticed the extended name that is attached to your neobladder VIP..is that a reference to a procedure or is VIP referencing all neobladders.
In transition.. thanks for your encouraging words and taking the time to write. While writing this post, I just took a call from a friend and when asked "how are you doing" it felt good to answer that "I am encouraged" and one of the main reasons is the discovery of this forum.
Pat and Jack my first doctor who discovered this bladder problem in me was Dr Spodek. Through my time in his care I found him to be 100% so when he recommended Sunnybrook and Dr Nam,I found no reason to be concerned. You both have me hoping that I have the right surgeon..yet I do feel quite comfortable with my decision. Next week I will be meeting a couple of his patients that have had the RC with the neobladder. Thank you both for your concerns...I'm sure you're trying to offer help and choices. I have three weeks to go..and believe I'll stay put.

All the best Ed

Hi Ed
How did your 2nd opinion go at Sunnybrook.
I am also from the Toronto area.
I am very familiar with Dr. Jewett in Toronto at PMH.
If you need any assistance in getting a 2nd opinion I can help you.
I am President of Canadian Bladder Cancer Advocacy Network.
Check out our new website, we are just starting.
We have many of Canada's top Uros on our medical advisory board. www.cbcan.org
We are also looking for volunteers.
You can contact me at the site. email or phone.
All the best
Jack Moon

Hi Sled Ed....don't know who your original surgeon is ? I do know Dr. Nam very experienced in prostate surgery. Be sure to ask him how many neobladders he has done.
If you're up for a 3rd opinion or maybe he's your first doc???
www.oci.utoronto.ca/researchers/profile.php?lookup=2769
Dr. Michael Jewitt is exceptionally well known in the bladder cancer field in Toronto.
Just thought i'd throw that in to totally confuse you.
Most important is that this is done on a regular basis.
Pat