Brian,
Something else I thought about. For the two weeks before my surgery, for the 6 weeks after my surgery, and for the first two weeks of my radition, I had ABSOLUTELY NO CLUE what radiation was about to do to me. Until I went for my simulation to begin radiation, I thought I would run in once a day to have an xray of my jaw done, I would get a slight sunburn on my skin and might have a few canker sores in my mouth for a few weeks. My doctors kept telling me that they were going to make me sick again with the radiation but not enough was said.............or it wasn't said in the correct way.
THE most frightening moment for me was the simulation for radiation. No one told me of any mask. Radiation treatment and exactly what it is.........not what it does.........rather the process of it (mask, tethering of arms, etc.) needs to be made clear.

And let's not forget the baseline thyroid test that should be done be radiation and follow ups for years after.

Eileen

Brian -
Super idea! The wisdom collected here is priceless and finding another venue for sharing the information will certainly help. I do encourage you to consider a section for caregivers. There are so many unique problems for the caregivers for example: being an advocate for your loved one (I can't over-emphasize the importance) and caregivers' depression. Count me in for any help. I am a Marketing professional and am always willing to help.
Thanks!
Carol

Brian - Consider making this book an ebook. It can be published and hosted in a central location on the net. No printing or postage expense (see below). As an ebook, it can be easily updated without reprinting anything. It can be a work in progress, and still be out there helping. Users can read it on the computer, or they can print it out. Forms, journal pages, calorie counters, med sheets and more could be printed from the ebook as could any section. (We could probably get the office supply outfits to print the thing as people requested it.)

Then the Foundation could print an OVERVIEW of the material - the outline - the quick read - and refer the reader to the ebook for details. We could all distribute the overview - the way we distribute the cards and brochures about this site.

When I was brand new at this - I needed an overview - a big picture snapshot of where I was headed. I had no clue. Our printed overview could serve that 'big picture' purpose. As I headed further into the tunnel I needed details about different things - at different times. If I had been handed a manual with ALL the details at once, I probably wouldn't have read it. But if I had had a way to just get my questions answered, without having to deal with the entire magnitude of this disease.....

We could build our ebook like a pyramid. The apex is the overview - the broad strokes, the big picture - not much detail. Under that overview, by headings, could be a layer of slightly more detail on branching topics. Below that, more branches with more detail. Then I can read "deeper" until I get my question answered to my satisfaction. Next time I think about that topic, I may want MORE detail - so I read deeper.

We want to help people make good decisions, and be and feel supported. There are way too many variables in those tasks for one printed manual to do the whole job. It needs a more dynamic structure than just a book. An ebook provides that. A web site would be even better. Maybe the Foundation should consider this idea. It avoids big printing and distribution costs. It avoids the problem of 1st edtion, 2nd edition, etc. The net is the distribution mechanism - all we would have to do is make folks aware of it.

Just brainstorming. Any thoughts?? Be strong. Tom

Brian -
I think Tom has a point about making an e-book version, however I do want to encourage you to offer a printed version to be available upon request. When my husband was diagnosed and first started treatments, his desire and usage of the internet went from 'all the time' to zero in a hurry. I did order and received the Lance Armstrong Foundation notebook and Kenny used this as reference for a long time. I was the one on the web searching for more information. I find that by having both printed information and web based info gave us much more comfort.
Just a thought -
Carol

I agree that a printed version should also be avilable if an ebook is offered. Given that this disease strikes older people more often than not especially, an ebook is not going to be a format everyone will be comfortable with.

Nelie

Well, besides what has been posted here, I have had several communications with people interested in helping me/OCF in this endeavor. Clearly as we are describing it, this is a HUGE undertaking. Hundreds of hours of working through the information and writing the final copy, not to mention the review time and edits. Given all the commitments that I have, that can only be part me, and a lot of assistance from a competent writer/s. That is part of the costs of doing this, not just a time commitment, but also a financial one separate from printing expenses.

As Gary has stated, there are several books out there, that while not oral / head and neck oriented, provide many of the answers. I have looked at many of them, and in my opinion, there are many good, but none that address the specifics of our disease. Of course if you just want to know about the different kinds of radiation for instance, there are plenty of books and places to get this

Brian, this does not address the above, but I just finished reading the "tube feeding" posts and wish I had read them a year ago to help John. Will there be a topic on that in the "Tools" ? Amy

It is an important topic that is always asked about by everyone that comes to the forum. Seems like a must have. But right now I am interested in direction and comments related to that.

Brian - Allow me to further clarify my ebook idea. First of all, it can be sold over the net very easily. Thousands of ebooks are sold every month.

The older consumer is an important issue. (And I didn't feel much like surfing while I was sick either!) The basic book - the overview (defined as you like it) can be hard printed and distributed in many ways by hand and mail. The details - the mass of data we would want people to have access to - the potentially scores of pages with lots of good info - could be internet distributed or web site disbursed - either free or for a fee.

The average cancer patient, of any age is not cruising the book stores any more than they are surfing the net - no matter their age - they are busy being sick. How did you intend to sell the whole printed book? How would you market? I assume you will be counting on caregivers both professional and family to recommend the book. Whomever gets the nod to go get the thing - order it from you, find it in a store, or whatever can still do that. It just won't be 300 pages and cost $28.50. The potential consumer who could order it from you, but not access it electronically - can still order it from you.

Publishing hard copies of books is pretty competitive business, and frankly, pretty old fashioned. Plus, our topic needs updating pretty regularly. As soon as we send this book to the print shop, it begins getting stale. If the book is very big (40 or more pages) you risk being unable to sell them all - leaving you with a dated and expensive inventory - and no market. Being a publisher is very, very risky financially.

An electronic book can be printed when its ordered. Printed by you and mailed to the consumer for $23.50, or the consumer can have their local copy store print it out for them after buying the download code from you for $8. Or they can print it at home. No OCF inventory. No up front printing expense. No gambling on the potential market for it.

The book can be continuously updated. The book can be constantly modernized to offer the newest info, even other brand new books, news articles etc. It never wears out, it never gets dusty, it never gets dated. Oh, did I mention, IT NEVER GETS DATED or OBSOlETE.

Sell the overview for $5, or give it away. Sell the download code for the next level of detail (or print it and mail it to them) for $19.95. Sell the entire compendium - potentially hundreds of pages - for $69.95.

Think of all the good details that are stashed on the OCF site right now. What if all that data was organized to a datafile, cross referenced and menu driven and then downloadable??!!

The book could go out as pieces - weekly "episodes" of information - sold as a subscription to the OCF Ezine. Each piece is sequential and offers more overview, details on a topic and news about recent happenings. The Ezine is sent out automatically by an autoresponder. It sends out new sections each week or at whatever frequency you choose. The caregivers can read it, decide if they need it and print it, or request a hard copy, or just store it. Again, it is data base driven and not hard printed in advance. The OCF Ezine - just $9.50 per month - billed automatically to your card - cancel anytime you like. There are many paid-subscription ezines published every week.

My push for this is based on two things: money and being in the 21st century. Why gamble on publishing? Why not underwrite some of your future, on-demand printing costs with some of that publishing money, and use the rest to market the book. And why expend all this energy to write a book that will quickly become dated? That is all so.. yesterday. Ok, I'll drop it now. Thanks. Tom