« previous next »
Pages: [1] 2

Author Topic: the Long AN journey... and the new family members met along the way  (Read 8548 times)

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
the Long AN journey... and the new family members met along the way
« on: January 04, 2007, 03:54:02 pm »
Ok, feeling a bit mushy here... but... I went back to find my very first posts here (gawd, over 1500 posts ago!) and found the initial thread of me saying hi to everyone:

http://anausa.org/forum/index.php?topic=371.msg2374#msg2374

I sit here, now 1-1/2 yrs later and realize just how far I have come in that timeframe.  And I have to thank you all for being there during this journey... and to Raydean....what do or can I say?  You've been there from the very start.  You helped to educate me.  You, my dear, are too special in my heart. I thank you.

I know this website has brought so many so close.  Whether in posts, emails, face to face meetings, etc.... how do you feel this website has helped you? 

Thanks

Phyl
Logged
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Brendalu

  • Hero Member
  • *****
  • Posts: 1286
  • Smile..it makes everyone wonder what you are up to
Re: the Long AN journey... and the new family members met along the way
« Reply #1 on: January 04, 2007, 04:04:34 pm »
It must be a reflective time of the year!  I went back and read bits and pieces and really wish that I had read more  BEFORE I had my surgery and really talked it through.  I really felt so alone and I really didn't think I could share any of what I was feeling with anyone.  I also didn't think I would survive the surgery so there was no sense in making any more "friends".  Was I wrong on all counts.  If I could do it over again, I would do it all so differently, but I do know that from about three months after my surgery you ALL have been my lifeline and I appreciate each and every one of you more than you will ever know.  So to all of you, many hugs and many thank yous.
Brenda
Logged
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: the Long AN journey... and the new family members met along the way
« Reply #2 on: January 04, 2007, 04:33:57 pm »
Quote from: ppearl214 on January 04, 2007, 03:54:02 pm

I know this website has brought so many so close.  Whether in posts, emails, face to face meetings, etc.... how do you feel this website has helped you? 

Phyl

Phyl:

It has given me much important information, made me feel part of a caring group and allowed me to interact and help other AN patients.  That's why, 7 months post-op with few complications, I'm still visiting and posting here.  :)

Jim[/color]
Logged
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

flier58

  • Full Member
  • ***
  • Posts: 147
Re: the Long AN journey... and the new family members met along the way
« Reply #3 on: January 04, 2007, 05:24:19 pm »
Hi Phyl and my AN family,
That is exactly what this site gave me-an extended family.  I don't know how I would manage to go through all this trauma without people on this and cyberknife site (special thanks to marystro and Mark who held my hand in cyberspace).   
Flier58
Logged

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: the Long AN journey... and the new family members met along the way
« Reply #4 on: January 04, 2007, 05:44:17 pm »
 Hey Phyl,

  I did the same thing last night, 1/3 !!
  Geuss it could be the time of year, huh Brenda ?

  Anyway,while skimming through my posts,  I noticed my ups and downs, like the rollercoaster ride it is,
  & through it all, you guys have always been there.

  You're right Phyl, & everyone, I couldn't have gotten/still going through, any of this without you guys.
   You've all taught me so much, this IS the best experience of the trip.

   Love & Happiness to all,   Nancy
« Last Edit: January 04, 2007, 09:02:06 pm by nancyann »
Logged
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Static

  • Sr. Member
  • ****
  • Posts: 499
Re: the Long AN journey... and the new family members met along the way
« Reply #5 on: January 04, 2007, 07:09:54 pm »
First I would like to say that originally when I joined back in 2003, it was a whole different forum.  The ANA forum of today is a million times better than that, so congrats to whoever keeps this site up because I've seen major improvements from what it used to be.  I have met alot of people through this site and have gained alot of support from people who I would love to meet at the Philly Symposium (hint hint) and hopefully I was able to contribute something to others who needed it as well.  Since this AN thing is as uncommon as it is, it's nice to meet people, although spread throughout the US, who can understand what each other is going through.  Hugs to everyone and to the ANA for this wonderful site that allows us the opportunity to get together in one way or another!
Logged
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

lmurray69

  • Sr. Member
  • ****
  • Posts: 326
Re: the Long AN journey... and the new family members met along the way
« Reply #6 on: January 04, 2007, 08:19:35 pm »
  As you all know I think you are all the greatest .You have always been here. Very attentive and then came the answers, some I didnt want to here ,but i knew that you like my real family would do . told me the truth. If it wasnt for this site .I would not have my life back. My friend AN( malignant tumor) died january 2nd ,2007   he was 39 yrs old.. He too looked for help through me. Thank you , Capt. Dee for sending me to house, I will be forever greatfull. again Thank you all..Just holler I am here. I have quit a few pitty days but that will pass..Love you all Brothers and Sisters...
Logged
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

matti

  • Hero Member
  • *****
  • Posts: 1234
Re: the Long AN journey... and the new family members met along the way
« Reply #7 on: January 04, 2007, 08:50:27 pm »
I am so grateful to all of you, as you have helped me not only heal the physical side of AN, but the emotional as well. I feel so blessed to walk this journey with you...Thank You!!!!

Hugs,
Cheryl
Logged
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: the Long AN journey... and the new family members met along the way
« Reply #8 on: January 04, 2007, 09:12:45 pm »
My dear friend said a few weeks after my treatment:

"Mary, there is a reason why you have your tumor --- to help others!"

I think we have all touched someone's life through this journey.  And it's for the better!!!  :D
Logged
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Lorenzo

  • Guest
Re: the Long AN journey... and the new family members met along the way
« Reply #9 on: January 05, 2007, 02:55:18 am »
What I love about this forum and all of you, is  the humanity, the sense of fun, and the feeling of a great 'family'. Two years after my CK sessions I come here to find support, get answers, try to help others if I can, and just for the sheer pleasure of the contact with friends. This forum is is an incredible asset to all of us and a great place to be.

Thanks to you all. Lorenzo
Logged

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: the Long AN journey... and the new family members met along the way
« Reply #10 on: January 05, 2007, 06:11:55 am »
You all just rawk... you really do :)

Question... I know there are non-ANA sanctioned get-togethers that have occurred (such as the Good Coast Brunches, bad coast Brunches :D, etc....) how many of you have  taken the opportunity to take time to meet others (in person) from this website and you're feelings about how this website helped to bring you all face to face (or even by telephone for those in areas that have not been able to attend the group gatherings).

Yes, research I am doing... :)

thanks again all! You truly are family!

*shakes Sister Sledge song We are Family out of head*

Phyl
Logged
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

krbonner

  • Hero Member
  • *****
  • Posts: 700
  • www.facebook.com/krbonner, bunnums on Twitter
Re: the Long AN journey... and the new family members met along the way
« Reply #11 on: January 05, 2007, 07:40:16 am »
Quote from: ppearl214 on January 05, 2007, 06:11:55 am
Question... I know there are non-ANA sanctioned get-togethers that have occurred (such as the Good Coast Brunches, bad coast Brunches :D, etc....) how many of you have  taken the opportunity to take time to meet others (in person) from this website and you're feelings about how this website helped to bring you all face to face (or even by telephone for those in areas that have not been able to attend the group gatherings).

***raising hand and waving it around***

I've made time to meet people in person.  But you knew that already...   ;D  And I'm planning on going to the symposium in the summer to meet more of you!

This group has been amazingly supportive and a source of strength for me.  I still draw strength from everyone here now that I'm in another difficult time of my life (my father decided to discontinue chemo treatment and is returning home for end-of-life care) - just reading everyone's posts and seeing all the geniune concern, care, and support out there in the world does a lot for me even though I'm dealing with issues unrelated to my AN.  I hope to be able to do my part to pay it forward whenever I can.

xoxoxoxoxo

Katie
Logged
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Lorenzo

  • Guest
Re: the Long AN journey... and the new family members met along the way
« Reply #12 on: January 05, 2007, 10:27:39 am »
Meet some ANers in person? I wish... The irish lot are a private bunch and not one to share and commune easily. I made the effort of being available for people, and some have contacted me by phone. Others contacted me by phone, one from Canada and one from Australia. Interesting being able to chat. However, when it comes to meeting people face to face, not since the week right after diagnosis. I'm standing alone here. But hey, who complains! I have great friends that I chat with regularly on MSN and I have this forum! What more could I want!!  :)

Katie, sorry to hear about our father. Difficult times. Thinking of you.

Ciao, Lorenzo
Logged

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: the Long AN journey... and the new family members met along the way
« Reply #13 on: January 05, 2007, 10:35:02 am »
Lorenzo, Got Skype working?  You are not alone! :)  Let me know when it's up and running and the Boston Brat will talk AN and all things UK with you :)


Katie..... well... you know...  :-*

Phyl

Quote from: Lorenzo on January 05, 2007, 10:27:39 am
Meet some ANers in person? I wish... The irish lot are a private bunch and not one to share and commune easily. I made the effort of being available for people, and some have contacted me by phone. Others contacted me by phone, one from Canada and one from Australia. Interesting being able to chat. However, when it comes to meeting people face to face, not since the week right after diagnosis. I'm standing alone here. But hey, who complains! I have great friends that I chat with regularly on MSN and I have this forum! What more could I want!!  :)

Katie, sorry to hear about our father. Difficult times. Thinking of you.

Ciao, Lorenzo
Logged
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

flier58

  • Full Member
  • ***
  • Posts: 147
Re: the Long AN journey... and the new family members met along the way
« Reply #14 on: January 05, 2007, 11:41:27 am »
Dear Katie,
My heart goes to your Dad, to you and your family.  You are in my prayers.
Flier58
Logged
Pages: [1] 2
« previous next »