ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathleen5306 on July 02, 2008, 05:49:36 pm
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I think this is obivous to most, but I wanted to take the time to acknowledge what an incredible support this site is to me as I evaluate my options to deal with my AN. The last few weeks have been rough, but the hours I have spent on this site searching, researching and learning have been the best thing since being told that I need a second treatment for my AN. I don't want to take for granted the difference this is making in my process. Thanks to all who have built this into an amazing web of support.
Kathleen
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Kathleen -
this truly is an amazing support site - as well as an incredible resource for AN patients, family members, friends, etc.. Personally it's been a Godsend for me, which is one of the reasons I stick around here, even though I'm now 13 months post op.
I didn't find this site until after my retrosigmoid surgery, but I've always wished I had found it sooner. There's just something about being able to connect with others who totally understand what you are going through.
IMO one of the best things we can do is mention this forum, and the ANA in general, to the healthcare professionals we come into contact with. I firmly believe that everyone who is diagnosed with an AN can find something of interest here.
Jan
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Jan
I did not find this site with my first course of treatment which was in October 2002. I'm not sure if it would have changed my decision, but it certainly would have changed my attitude of not feeling so alone. As I am going through this for round 2, this site has been the saving grace. When I was first told I was in the exclusive club of the 1% that had failed CyberKnife, my reaction was "WHY ME!!!" Now my reaction is "Why not me, I can get through this." I will spread the word in my circles, with my medical contacts and with anyone who might benefit from it. I am grateful it is here and do not want anyone to think their thoughts and contributions don't make a difference. They really do.
Kathleen
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Having just been through diagnosis, reasearch and surgery, i have to say ditto and also a big thank you.
This site has been the best thing about the whole diagnosis. It is such a big thing to get answers and support!
Thanks all.....
Trish
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Kathleen,
Welcome to this forum. I am so sorry to hear that you have to deal with an AN for the second time, especially in such a short time period. You are right, this site is a wonderful source of information and support. I was fortunate to find this site the day after I got my diagnosis back in April. Although I have not yet been treated for my AN, I am scheduled for surgery later this month. I have to agree with Jan that this site is a Godsend. I am sure I would not be as psycologically prepared or have the positive attiitude I have were it not for the support I have received here. We are all happy to support each other and newcomers to our AN family in whatever way we can. Please feel free to ask any and all questions and vent when you need to, That's what wer're here for.
Wendy
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When I was first told ... my reaction was "WHY ME!!!"
Now my reaction is "Why not me, I can get through this."
Very nicely said, Kathleen. It comes pretty close to being a motto for the ANA forum.
Steve
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my reaction was "WHY ME!!!" Now my reaction is "Why not me, I can get through this." I will spread the word in my circles, with my medical contacts and with anyone who might benefit from it. I am grateful it is here and do not want anyone to think their thoughts and contributions don't make a difference. They really do.
Kathleen
Kathleen...with that kind of attitude, you WILL get through this. We are here to support you through every part of this process. I have found great support here, even when I don't post. If I am having a bad day, I lurk and usually find something to lift my spirits.
If you look through some of the posts, you will discover some of our members have a wicked sense of humor and some potentially undiscovered talents. Just ask Steve to knit you a hat ;)
Welcome to the forum. It truly is a great group here.
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Kathleen -
I'm so glad you found this site too. I didn't find it until after my translab, but it has gotten me through the rough times and I'm sure it will continue to do so. There's strength in numbers - and I'd say we're pretty strong around here - no matter how rare we are told we are! :D
I think we should see one of Steve's hats first before we decide if he's truly talented though. For all we know, his hats may look more like knit socks! :D
Lori
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Hi Steve,
By the way, I was hoping for my hat before I went on vacation. Guess I'm out of luck! See you all in two weeks!
Wendy
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Nice to meet you, Kathleen. And, I agree with you that this site is a Godsend. I felt so well prepared for surgery, and it is all becaues of the people on this forum and their willingness to share their experiences. I was also well prepared for complications, so my recovery, while not exaclty smooth, has gone very well. Knowing that you arent' all alone is such a comfort. Glad you are here!
Wendy - silly goose - you won't need a knit hat in FL anyway... But let's start pressuring Steve now because fall in the northeast is just around the corner!
Debbi, grateful for all my forum friends
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Kathleen:
Thanks for the kind words of appreciation for the website and the forums. I wholeheartedly agree, of course, and I'm proud to be a part of this 'select' group, right along with you. Your positive, affirmative attitude will be of great benefit to you in the weeks to come as you make those difficult but necessary treatment decisions. Just know that we'll be here to support you all the way.
Jim
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Hi Kathleen
I am sorry to hear your AN is back. I agree with you this site is an incredible site the people are supportive. I found this site two weeks after my diagnosis. My doctor told me the best therapy was to do my reasearch and give lots of thought to all my options.
There is alot of information out there but what I found to be the best was this forum. reading actual testimonies and talking to everyone has eased my mind as I get closer to having my surgery. I'm glad you found it.
Sam
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Kathleen~
This is a wonderful group of caring, supportive people - I wish it would've been around when I had surgery - heck, I wish the internet would have been around more!! ;D Seriously, I fumbled around for 12 years until I found others that TRULY knew what I had been through - not that I ever let it get to me - I didn't know what I was missing and had a super support group (& hubby), but it is different to have those that have "been there"!! Be glad you can have this!
K
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Yes this is an amazing site. It's my 1 year anniversary on this site!!! ;)
Lots of information, support and laughs.
Thanks my fellow forumites,
Anne Marie
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Hi Sam,
I haven't seen any posts from you recently and wanted to say "Hi!" I looked to see if your surgery is on the calendar.but it is scheduled for this month, you didn't post it. If you have surgery before I get back from vacation (on or about 7/17) I wanted to wish you good luck. Good luck to to Coffeelady and anyone else I missed
Jim -- Good luck with your second MRI on t he 18th. I hope you get only good news!
I just had a few minutes to check things out i-- took a short break from finishing packing. To everyone else, I wish you good health, good news and better days. See you in two weeks.
Kathleen - Sorry for hijacking your thread - hop you don't mind.
Best wishes,
Wendy
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I'll echo the comments of everyone else. This site has been a Godsend. Today is my seven month surgery anniversary. It is also I believe my fifth month anniversary on this site. I can honestly say that without it and all of you and your support, I would be absolutely lost today. I've only had hints and clues from medical professions as to what was going on with me. I don't know whether it was an issue of culpability or no one wanted to be the bearer of bad tidings, but it was only through this site that I discovered that there was something wrong and I was able to do something about it and come to grips with my new life. And I really admire Kay for going through all this in the Dark Ages. Maybe it could take a letter writing campaign to ENTs who diagnose ANs to add a mention of this site when they give their referrals for surgery. Like Jan and several others of you, I wish I had know about this site prior to surgery. In hindsight I don't know for sure, but I am guessing it may have lead me to consider and undertake different options.
David
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I think we should see one of Steve's hats first before we decide if he's truly talented though. For all we know, his hats may look more like knit socks! :D
Lori -
word has it that Steve has given up on knitting hats. He's moved on to cell phone and iPod cases! - and you thought they were socks :o
Jan (hijacking again ;) )
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Jan~
Obviously you have been reading the book...I think about Steve often... ;D
K
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The word "Godsend" is used alot when talking about this site and I can't imagine a better word to use. I love David's idea about a letter writing campaign to ENT's so this site can be reached to more people. I can't imagine going through this experience without the knowledge and wisdom I gained from everyone.
Thanks everyone.
Julie
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Julie -
thanks for pointing out David's idea of a letter writing campaign; I missed that when I read his post.
Great idea, David. You're such a wonderful writer, I think you should draft that letter for us ;)
Seriously, I really think you should.
K -
I've been wondering myself if Steve's picked up any knitting tips from the book. Guess I'll just have to wait for the symposium to see if he's going to present me with my hat ;)
Jan
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I also would like to see David's "Open Letter to ENT's of America from the ANA Forum Members."
As for the knitting, based on my reading so far, it appears there is a chance you will be getting scarves instead of hats. :-[
Steve
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Steve~
I'd settled for a coaster since you have so many requests for hats for those with BAHA... ;D
K
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Steve -
I'd settle for the socks that Lori referred to, but I have large feet. So to make things easier for you I'd take a cell phone or iPod sleeve ;)
Jan