ANA Discussion Forum
AN Community => AN Community => Topic started by: msuscottie on February 12, 2007, 11:28:02 am
-
When I was first diagnosed in 2004, I searched the web for any books that were out there pertaining to AN's or Brain Surgery. There wasn't much that I could find other than "I Had Brain Surgery, What's Your Excuse?"
That was a good book, but after I knocked that out in a week, I wanted more. There was nothing. After meeting so many great people here and sharing some amazing stories, I realized that our stories are the ones that I was once searching for to help me through my AN journey. I've decide to put together a book that could be an outstanding resource for anyone living with an AN. I'd like to get about 10 writers with different stories to share their experiences. I am going to write a chapter about my 2-stage surgery, and we'll have someone write about GK, Watch & Wait, Misdiagnosis, you get the idea. At this point I'm just trying to identify the writers who would like to share their expeirience. If you think you have a pretty unique or interesting story, and would be willing to share it in about 10-15 pages, please let me know. I would love to find different experiences and different ages/parts of the world. I think this could be a really great thing. Once we have the writers in place (I know Laz, GennysMom, Sue & Chris have already expressed interest) , you'll have a few months to write and we'll hammer out the other details (any profits would be split equally). Let's start by doing this, if you're interested please reply to this below with the following info ...
Name:
My treatment option ...
I'd like to write about ...
My story/point of view is unique because ...
Something else that should be included in the book is ...
Thanks everyone!
-
Scott,
My name is Michael Huggins
Diagnosed 1/18/07. Currently (this week) seeking 3rd Dr.s opinion on my candidacy for translab or GK.
Being a musician possibly makes the decision for type of treatment a little more intense. Also, having had a few major surgeries before (removal and 2 resections of my ascending colon) and continuing to deal with some permanent complications of those surgeries does
-
Thanks Mykey,
Maybe a chapter about "choosing the right treatment option for YOU"?
-
Hi,
I wrote a blog all along... mylmup.org
ciao,
Lorenzo
-
Scottie-
I just sent you a personal message....
Nan
-
Awesome.
If we can find enough people to get this going, you've got the "Recovery" chapter. Let's see how many people step up over the next few days, and then we'll lay everything out for our "group." I figure if we can get 10 people to do 10-15 pages, and then in addition to my chapter, I can write an intro and a wrap up, we'll probably get a 150 page book out of it. I've actually been contemplating writing my own book about this for some time now, at the very least it could be something to chronical my journey, but then I thought that it would be more helpful to others to hear some different stories/perspectives. You're definitly IN if we can get this going, now you can help me recruit more folks! Who else has an interesting story out there? :)
-
I had my surgery in 1998 and would love to write about my journey. Would it be OK to include my husband's thoughts and views?
Cheryl
-
Of course it would, each person's chapter will be what they want it to be, maybe you could focus on that part of it though, how it affected your husband.
-
Scottie, that's a great idea, we should let a caregiver do a chapter from their perspective. Shelton would be great (Cheryl's husband) or I'm thinking Patti UT's husband Mike based on some recent developments of spending time with other posties giving him an interesting perspective.
-
Hi Scottie:
My story was pretty blah but I would be glad to help. I think you should look up Tom, the guy that spent the night in jail??
Kathy
-
oh, forgot, as a designer i'd be delighted to take on the design of it, inside and out, cover, pages etc. Can I just include my blog? might be a different way to approach it, i can just trasnpose most of it.
What d'ya think?
Ciao, Lorenzo :)
-
Sure, might be an interesting angle. I'll try to read your blog today. Thanks.
-
sure, feel free to read it, that's what it's there for! Just remember, I will have to edit it down a bit in places. Not all of the stuff will go in, just the actual blog section. My intention would be to keep it in the blog format, chapter by chapter. Nothing new but it might be interesting.
by the way, any images going into the book? There probably could be. And a section of information on ANs, resources, etc.
Ciao, Lorenzo
-
Yeah, once we get our "writing team" in place, we'll hash out all of the details (name/pictures/chapters). I'd like to get about 10 writers and at this point I think we already have about 5 folks interested. The thing that I think is valuable is if each person has a different angle. For instance, I had a two-stage microsurgery, I'd like to find someone who had GK, someone who had a "textbook" surgery, someone who had a lot of complications, maybe a spouse or family member that could write their experience from the outside looking in, perhaps someone with NF2? I don't know, I'm open to all ideas. Would just like to end up with a book in which at least one of the stories will relate back to the reader, regardless of the treatment or severity.
-
hey scott this sounds great. I have an interesting story. when i had my CFS leak i was in the hospital for 9 days with lumbar drain and they finally decided to go back in and fix the leak so they cut my head open and stretched my jaw muscle over to plug the leak. I now have 2 long scars. One behind my ear and one up the side of my head. My jaw is always really sore and i can't open my mouth very far. It's getting better every week though and my hair is so long it hides it. Thank goodness.
-
I think this is a great idea. Definitely would have helped me. Are you going to add an AN dictionary to it? And a list that references websites and support groups?
Good luck! I look forward to reading it!
-
just a thought.... while each person is writing a chapter, thoughts on obtaining quotes to add to their chapters from their treating physicians/teams?
Just brainstorming.... heck, if my brain is working, enjoy it while it lasts! :)
Phyl
-
Great idea Phyl, for those writing be sure not to use your Dr's name without their approval. For Instance, If my Dr. is Dr. House, we'll call him Dr. H in the book.
-
My name is Angie Stowers. Diagnosed in May "06. I had retro surgery on Aug 21st. On Sept 1, I was rush back to the hospital with a blood clot in my sinse vein in my brain. On Sept 2, the clot was removed. Recovery has been stressful. I'm 32, married with two girls in 1st grade and Kindergarten. I would love to be involve with this book. I was like you, couldn't really find much information or what to expect at all.
-
My name is Justin and I am a 31 year old husband and NEW dad from Winnipeg, Manitoba, Canada, the cold white north. I was just diagnosed February 20, 2007 with a 2cm x 2cm AN. I am scheduled to have surgery in Toronto via the Translab approach in May 2007.
I have started to document my journey since my symptoms started in December 2006 and would love to contribute to this book. I think this would be a wonderful tool to help people cope with diagnosis, decision making, and the emotional stresses.
Keep me in mind if you would be interested in my story.
POSITIVE! POSITIVE! POSITIVE!
Justin
-
I would be interested Justin. Please let me know if there is anything I can do to help. I too am 31, and have an 11-month old daughter. I've had two surgeries to remove a 3.5cm tumor. Hang in there!
-
Are you still looking for material for the book?
Lainie.
-
Yeah, well we had a lot of people commit to writing their stories, but as you might expect, finding time to do that is tough. Right now we only have 3 stories, so the more, the better
-
Hi Scott,
My story is not "exciting" as my surgery went off w/o a hitch, but if you are looking for the typical perhaps I can help?
-
Yes I would like to write my story as well. AN was removed, had two CSF leaks, menigitis. administered antibiotics 6 hours a day via a home pic line, lumbar drain, gold weight in eye and pending an eye surgery this summer to correct double vision. Had a tough year but year ended with some great personal accomplishments. :D
-
Hi Scott - I saw your original post, thought "Gee, that's interesting, I'd love to do that", and never responded. I'd love to contribute, if you are still looking for storie. Mine in summary - had a baby 06/26, diagnosed 07/24, surgery to remove cystic part of AN 08/16, and Gamma Kanife in October - I think somewhat unique due to having both surgery and GK. Please let me know if you're interested, I could probably pound out 10-15 pages over the course of a week. I should have contacted you earlier, I've had so many sleepless nights on Decadron, but am finishing my final dosage tomorrow!
-
Just found this post, sent you a pm.
-
Hey Scottie,
I have started mine - time is a concern but am working through it.
Laz
-
I am not sure if you already found writers. I was in the hospital for 7 weeks and had every complication possible. I couldn't eat for 3 months and had to learn how to walk again. My tumor was the size of a grapefruit.
I had staph, menigitis, and a whole lot more...
It would be a nice thing to write about...email me or reply if stories with complications are still needed.
Meagan
-
Let me know if you need a cyber knife experience... this is a great idea, thanks for doing it! Annie
-
I have to apologize to everyone for my non-response on this subject of late. I just, last week, had GK done so that's been my focus over the past few months. While the original book concept was exciting for me, it became extremely overwhelming at a rapid rate. Within a month of sending this out I had close to 30 folks willing to contribute which was great, but some also wanted to know specifics which I could not provide. I've never written or published a book, so I've never really known how the publishing side works. I was just a guy with an idea.
When people started asking me to write up a contract to determine who receives what percentage of profits, I decided to put this on hold. This idea was never about profits and the business side became too much for me to deal with. I just wanted to share my story. The whole publishing process can take years and there is some expense to it. I didn't feel I could deliver what people were looking for. One person actually sent me a story and said, "here's my 5 pages, you can send royalty checks to this address."
The reality of this project is that it would probably take years, time and money to make happen. We'd probably never make a penny from it and the chances of being published are similar to those of being struck by lighting.
I enjoy writing, so I've continued to write and chronical my AN journey. At last count, I had about 15,000 words. After doing the math, I realized that a 100-page book is about 25,000 words. With that said, I've continued to write in the hopes of completing my "story." It will probably never become a book per se, but I'd like to complete it and have it printed and bound if for only me to have a copy of my "story" to keep on my bookshelf. I also want to have it to share with anyone who's interested.
If I do complete this, it may be worth a shot to send it to a publishing house and let them decide if they want to pick it up. In order to really be considered a "book" that's worthwile for AN newbies to read. Other than my story, what would be worthwile to include? I don't want this to be a reference, that's what Dr's are for. I'd prefer it be the patients voice. Not the Doctors and the medical books.
I thought that if any of you were interested in contributing a 1-page letter of advice for "newbies" I could add a section in the back that is something like "Letters from AN Survivors" and then maybe have 10 or 20 simple letters with advice and encouragement. I don't know, just a thought.
I can't promise fame & fortune, but if this ever comes to completion at least you could print a copy for your bookshelf. I'd love your feedback/ideas and if any of you are interested in proofreading my "story" as I finish the draft, let me know. Your opinion is the one that matters to me.
Thanks
-
I always liked the book idea too but not so much for the newly diagnosed. There can always be a chapter devoted for the newly diagnosed.
It would be nice for people that are either friends or married to someone that has an acoustic neuroma so they can properly understand the mental and physical impacts before and after treatment.
-
Scottie,
My girlfriend "self-published" her book chronicleing her life circumnavigating the globe with her husband aboard their small sailboat. Email me if you would like more info on this subject.
-
... ever think about a web page !!!
-
Please write a book and if you need any "stuff" for it, please let me know, I would love to share my story to help someone and I don't expect anything in return.
-
Hi Scottie,
Don't blame you for changing your plans on the book idea. Awfully big project to take on. However, I'm glad you brought this project up because it helped me to write out my story. Pretty good therapy I think! So, everyone, this is a good class assignment. Write up at least 5 pages about your AN experience and don't send it to Scottie 'cause he has enough on his plate...but save it for your own memoirs.
Sue in Vancouver USA
-
It is nice to have a memoir of your "story," and that's why I'm continuing to write mine. Someday my daughter will read it and understand what I was going through around the time she was born. I even read now what I wrote immediatly after my first surgery and it really takes me back. It's great to forget about it all, but also sometimes good to remember. Sue, I may have a 1-page assignment for you yet, I'll email you about it. :)
-
Hey if the book doesn't happen then so be it...You still have the great "patient network" http://www.patient-network.com/
-
Thanks for the plug, that site has been dying a slow death, it'd be nice if people used it :)
-
will do scottie
Laz
-
Gees Scott, I'm really surprised that contracts and royalties were mentioned at all. Yikes. I was thinking along the lines that the ANA should publish it as a fundraiser for more research, awareness..
As memoirs are a hot ticket- you definately should do your own- gosh buddy you've been through it all!
Take care of yourself- Annie
-
Hi
Am new here and I really like the idea of the book. Don't stop yourself from doing this because some people want to get money out of it, do it for yourself...
By the way i have an interesting story and willing to give it to you just to help people fell better about them self and this AN. I was diagnose in march 2007 af a 3cm by 3.2 cm An and I am now pregnant and they want to operate as soon as possible even whit the baby. Am from canada and our health system doesn't work like your so my options our retraint. If you want more info just contact me.
And keep up the good work.
A book like this is highly necesary.
Julie ;)
-
Scott, I enjoyed reading your journey about a possible book, and how it evolved to deciding to chronicle your story for your own reference. I agree with others that writing it out is very therapeutic.
Back nine years ago while still "raw and fragile" for the surgery and recovery issues, I took a writing class at my local community college. One of the articles was about my then recent AN experience, complete with humorous observations about the hospital staff.
To this day, it is fun to read, when I happen to find it when going through old stuff. Write on, all!
Kate
-
Did you ever write your book?
Cathy