Amy, I have that book as well as another from Cancer Care. They don't do what we intend to do, and that is not our model. Right off the bat, OCF had a chance to partner with BMS to do that very same book, and we turned it down because there are ideas that they wanted in (all the stuff about symptoms and diagnosis and things that are BEFORE diagnosis), that are irrelevant. You have the disease. This is all a mute point. There are more issues than that, but as one example try and actually use their log area. It is so small for each day you couldn't possibly write in there the things we need to. And things that we talk about keeping track of here, they don

I just read the first few posts this morning... You guys are great!! These are the ideas that we need to share with others. At the end of the day today I will get the new forum up, and we will start new threads about several of these topics. We will be working with a long term friend and graphic designer Tom Grogg in Newport Beach to set up the final look and feel of the piece. I have already estimated how many pages of printing this is - part black and white, part 4 color, and we are getting bids on printing now so that we have a target fund raising goal. This is a huge project and expensive to do well. I am talking to to potential sponsors to help pay for it, but Ingrid and I will put up the first money, so that in a few months after we have all put our ideas together and it is fine tuned, it will not be held up waiting for funding. You guys are the best!

PS: A couple of you have written me about the other books. There is good information in them. They are not bad, worthless or any of that. I just think we can do better. I look back at the 4 years of dialog on these message boards and the wisdom here is significant. It is born of real feeelings and experiences, and not just a list of potential problems, definitions, and a glossary of terms. There is valuable information in here that goes beyond what has been done before in print. We are going to make something really useful. It is not a book, it is a TOOL. That dosen't mean that some other organization did try to do good, all it means is we are going to add to the resources that patients have, and not just from a clinical nuts and bolts perspective.

Brian,

What a great idea!

I will be happy to help out in any way even though my experiences were fortunately very limited.

You know you can count on me if I can help with any dental aspects of the project.

Jerry

This book would have been a lifesaver for us 3 years ago. If I had a nickel for every time the Docs would say "Oh yeah I could have told you that".
The simplest things.... when your Hair starts to hurt , around 15 days into chemo, good indication its getting ready to fall out. Just shave it and save yourself some pain.
The trauma of port feedings..thinking I was going to kill him every time I saw a bubble in the line...after a week of that they tell me " don`t worry that little doohickey ( technical term ) takes the bubbles out"!
Maybe the Cancer Centers could be encouraged to buy the book to give to their patients...lets face it Cancer is big business.

Great Idea
Marica

See, but my hair hurt and a chunk along my neckline fell out but I kept the rest and was sure glad later I didn't shave it all off! But I remember Marica telling me about how it feels like your hair hurts and thinking "YES. me too." To me that's what's so valubale about this board is there hasn't been one thing I've run into that hasn't also happened (more or less) to someone else in here and without this place I'd have no way of knowing that.

I would also like to put a plug in for information about issues around making decisions about radiation and chemotherapy if you are stage II. Not a chart saying "do this" but the questions that should be asked, both the ones you may want to ask yourself and the ones you should be asking your doctors.

I also hope there's a section dealing with swallowing issues. This is the one thing I feel I really didn't know enough about when it might have made a difference--I should have had my swallowing checked and gotten exercises much earlier than ended up happening I think.

Nelie

Brian,
I think this is a marvelous idea and don't forget to also include that 'glossary of terms'. A quick course in the terminolgy helps the newcomer understand what the doctor is saying and what to ask for. I think the binder idea is great and should have the ability to add additional pages to the log if needed. I will help in any way I can. Unfortunately I never kept a log and as treatment was several years ago, I have forgotten a lot what happened when. I have often thought that there is so much good info here, that is was unfortunate that it count be consolidated into topics for new members to use with it all in one place. Search engines are marvelous if you know what to search on, but when you're new to the topic, you're lost.

Again, GREAT IDEA.
Eileen

Brian,
What a fantastic idea. It would have been a god send for us a year ago and maybe prevented some of the issues we are dealing with today. Still not sure if we have a handle on all of them yet.
Linda

Brian-
Such a great idea! I remember the first day I met the oral surgeon and he gave me about 5 minutes to decide between 2 different surgeries. My decision was based on the fact that the more invasive surgery would be a month away because the team was on vacation - I went with the less invasive surgery because it could be scheduled in a week. Looking back I wish I had known about this site or that someone would have given me a book when they first said "cancer." You don't even know the importance of your decisions or what questions you should be asking!

Tips I remember - The importance of stretching your mouth open and practicing swollowing during your weeks of radiation. It is sad to be healed enough to finally eat and then not be able to open your mouth wide enough to get the food in!
Starting physical therapy early in treatment with lymphatic message will keep movement in the neck, soften the neck tissue and help with swelling.
Using a contour shaped pillow when you can finally lie down to sleep again! - Kris

Brian,
Fantastic idea! I had a Handbook for Head and Neck Cancer Patients from the U. of Chicago that was very helpful, but didn't begin to answer the everyday questions that those of us who have been there can help with. Count on me to chime in when I can. My personal endorsement is for the Food and Fluid Log to track every calorie and ounce of fluid intake. My "wipe board" helped me immensely. I look forward to this project.

Thanks for the opportunity to help.

Chuck

This is certainly a great idea! I really wish we had known what to expect, especially on day one, when we went in for the first chemo treatment, expecting to get a few shots and then leave. Little did we know it was an all-day affair.
I think there should be a topic on what to expect on the radiation table specifically. Such as there will be days when you are on the table longer due to additional x-rays, may have to have additional CT scans, new mask, etc. If you need to take Ativan or Valium for this purpose, make it clear that you will need to be told ahead of time. Knowing this would have prevented a few unpleasant sessions for my husband, as well as some tension between us the radiation techs, which is not something you want when those people have your well being in their hands.

Actually, now that I think of it, wouldn't it be a good idea to have a section in there for the medical personnel to read, from the standpoint of the patient? Maybe it could start something like this...."We depend on your compassion and forethought as to what we are going through. With this in mind, please note the following points...." Or something like that.

Thanks for all of your hard work and efforts, Brian!

Michele