Book of Patient Stories is underway

[marysue]

Hi Everyone:

Just a note to let you know that I’ve got the book of Patient Stories underway. For anyone that didn’t see the post in the Hidden Forum – I’ve undertaken the task of writing a book about patient experience with bladder cancer.

The format that seems to be developing with what I’ve written so far, is different sections of experiences with bladder cancer and sections of information on cystos, TURBTS, etc. Some of the technical information will be a bit of a repeat of info either from the patient booklets or from posts on this site. Suggestions for this part of the book are also welcome.

I will make sure that any technical/medical information is reviewed by Bladder Cancer Canada and/or others for accuracy and it will be noted in the appropriate sections of the book. The Patient Stories are just that – patient experiences to be told however the contributor wants it. There will be a disclaimer prior to this section letting the reader know that the patient stories section of the book are for information purposes only. The main purpose of the patient stories is to offer hope and inspiration. I hope when people read the stories, they come away with the feeling of “if he/she could do this, then so can I”.

Now – I need help….Some of you have expressed interest in contributing your story and those stories are in various stages. However, we will need more patient stories to make this a complete volume. If you are interested in sharing your story as part of this book please private message me.

The biggest area where I would appreciate help is hearing from radical cystectomy patients about patient care hints, tips and tricks about what works for you in overcoming any challenges. ie. preventing infection, deciding on types of ostomy products.

I hope to get as many types of diagnosis as possible in this book so newbies reading later will be able to understand the scope, depth and breath of bladder cancer and find the care tips helpful with their own recovery. I also hope that this book would be helpful in giving physicians and clinicians insight to what bladder cancer patients are dealing with when outside the hospital or clinic.

Your story can be as brief or detailed as you like. The type of info needed, is a brief outline of your diagnosis, any surgery or treatments you did, any challenges along the way and how/what you did to overcome them. Other topics can be additional challenges you had in connection, or in addition to BC and how the two things played out together. A good example of this is how GerryW has been posting about challenges with patch adhesion products.

You can go in this book in several ways. You can use your real name or a pseudonym. I think using only first names is most likely best.You can write your own story and send it to me or just send me some basic info in point notes and I will create a story from that. Any stories that I “ghost write” for people will appear in the book as “John or Jane Doe as told to” otherwise the story will be credited to the author. Once your story is in draft form, I would send it back to you for revision to make sure that I got the story straight and give you a chance to change, add or delete anything. As mentioned please private message me first to let me know. I would like to have a first complete draft done before next June.

Some people have found recalling their journey more difficult than first thought. That is okay. Don’t go down any paths that aren’t working for you. Share what is comfortable for you. Many of you may find sharing your story cathartic and healing. It took me a very long time to actually be able to analyze, understand and share what I’d been through myself. I hope that this book will end up in an open ended format so that it can be revised from time to time as new patient stories and treatments emerge.

Thanks everyone. This is a chance for all of us to pull together and have one more tool in helping others. I’m looking forward to hearing from you. (((((HUGS)))))

[Author]

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