My Bladder Cancer Fight

Since my diagnosis of bladder cancer back in 2000, I have made extensive use of the Discussion Forums on bladder cancer.

Regardless of what they are called, they are a great source of information for those fighting this disease. In these forms, you are communicating with other bladder cancer patients. Not some third party. I have found that the Medical Community have the knowledge to help you to a certain point but they do not know everything about living with this disease day after day.

In the discussion groups you will find the little things discussed that will make your day-to-day living more comfortable. Little things like pouches that leak after a few hours. Other Urostomites have probably experienced the same problem and are willing to share their experiences with you. Perhaps some change that they made will solve your immediate problem.

Let me give you a personal experience that I had a few years ago.

I posted the following on a Discussion Forum

“In the hot summer weather, I am having problems with my pouch sticking to my thigh. The thin paper like material that the manufacturer placed on the back of the pouch to prevent sticking does not appear to be sufficient. I have used different types of powders but find them very messy and inconvenient.

Any suggestions?”

The suggestion posted by a person who had the same problem, surprised me.

Here is their answer.

“Take a feminine self adhesive panty liner cut it to the length required to fit on the back side of the pouch, remove the adhesive protectors and glue it to your pouch. This will keep the plastic pouch off your thigh and provide an absorbent material to keep the area dry.”

There advice was fantastic. It completely solved my problem. In hot sticky weather, the pouch no longer stuck to my thigh. My comfort level rose 100%.

This is just one small indication of the help that you can obtain from your fellow Urostomites. I have yet to see someone dispense any type of Medical advice. The standard answer for anyone seeking advice on a Medical problem is ‘I think that you should consult your Doctor or your Urostomy Nurse about this problem”.

This resource, I feel is not utilized to it full potential. Many newly diagnosed Urostomites have no idea of where they can find day-to-day information that would make their life more comfortable.

I have set up a Discussion Forum on my blog. It is open to all visitors to my blog. If you enter as a GUEST, you can read all the posted questions and answers. If you want to post a question or respond to a question, you will need to Register.

All contact personal information will be kept confidential. It WILL NEVER be sold or rented. Privacy is very important to me. Like everyone else afflicted with this disease, I have lost all lot of my dignity and personal privacy.

The reason for the registration is to prevent people from posting undesirable questions or replying to a question in an unkindly manner. The registration is to control those who are ‘just horsing around’. In the registration process, you must provide a legitimate Email address so that a password can be emailed to you. Without the password, you cannot post. All undesirable questions and comments will be removed as soon as they are detected.

I hope that all Urostomites will take full advantage of this Forum to better serve themselves and others.

I am going to open a Group for Colostomy. Pouch and skin care are very similar in both Urostomy and Colostomy. Perhaps, the answer to your particular question will be posted here.

The Discussion Forum can be reached from the Main Menu in the right hand sidebar. Alternatively, use the following URL Discussion Forum.

PS - Since this Forum is only 24 hours old, it needs some questions posted to get it going.

How about posting your questions NOW.

Posted on April 22nd, 2008 by Neil
Filed under: Bladder Cancer - Background, Discussion Form, My Cancer