Author Topic: Ok, time to meet the UK AN'ers!!!!!!!!!  (Read 5589 times)

ppearl214

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Ok, time to meet the UK AN'ers!!!!!!!!!
« on: October 17, 2008, 01:00:17 pm »
Hey all!

Ok, as you may have read here... the bloke and I are coming to the UK. 

Today, I received an email from my father-in-law, informing me that through discussions in his town (chit chat with the neighbors and such)... he has shared that his d-i-L (daughter-in-law) has an AN... to his surprise, he has confirmed 3 AN'ers in the small town (he's in Dorset County) where he lives. One wants to begin emailing with me and making arrangments to meet her.

We will be in the Dorset area (12/25-1/2) and will also be traveling up to Central London (around 12/28).

JeWeL.... I know you and I have spoken about meeting up in the Dorset area while we are there.. and really look forward to meeting you face to face.

I know many of you are in the Midlands or farther north (Sheffield/Leeds, etc......gotta love Yorkies... I'm 1/2 Yorkie as well!)... but, if there is a possibility that you may be near C. London around 12/28 or in the Dorset area, please let me know. I'd love to meet you.

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

JeWeL41

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #1 on: October 17, 2008, 01:42:45 pm »
Hi Phyll,
yes it would be great to see you. I'm around all over the Xmas period except 25th,26th,27th.  I've felt fine for the last 3 or 4 months until this week so I've been back to the doc who is going to chase up my test results. Hope you are OK.

See you soon

julie
« Last Edit: October 17, 2008, 01:55:31 pm by ppearl214 »
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #2 on: October 17, 2008, 01:58:16 pm »
Julie!!!!!!!!!  :-*

I had to remove your phone number from the post (not allowed to post personal contact info here, but can do so in emails and such).  I've saved the number in my own file and I have it now. I can email you my in-laws phone number so you will have it.

Since we arrive the night of the 25th and are having our Christmas with them on the 26th, I see the 27th you are not available... but... this will work! I'm feeling tea and pastries at the top of Gold's Hill, if you are interested.  Me thinks I need to buy you a cuppa.

About time they chase up your test results. If you don't get them... let me know. I'm cranky lately and will get on their case for being so lax.

can't wait to FINALLY meet you!
xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

hannie

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #3 on: October 21, 2008, 10:47:07 am »
I'd love to meet up with fellow ANers but i dont think i'll be 'down south' in december  :(

any ANers 'up north' who want to meet?

hannie


joebloggs

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #4 on: October 21, 2008, 12:00:29 pm »
Hi Phyl,

Would be great to meet up - alas I will be in Aus hopefully enjoying the sunshine and waiting for operation day to come along!

Have a fun trip!

JoeBloggs
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #5 on: October 22, 2008, 05:25:32 am »
I know it's a tough time to try to meet up since many already have plans.... wanted to get early notice to you all!

Got word from my father in law that he found not 1, not 2, but 3 AN'ers in the small town they live!  One has also asked to meet me and waiting to hear back from her (via email).  Julie, there may be another few to meet with us! :)  That would be terrific so everyone can see that they are certainly not alone, even in a small town away from C. London. Will keep you updated!

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

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #6 on: December 10, 2008, 02:06:14 pm »
well, believe it or not.. the trip is 2 wks away and I've been given the clearance to fly :)

Jewel, I've sent you a personal email (from my internet email address)... and there is another AN'er (not on this site) who lives in the same town as my inlaws that I'll be meeting. Venturing into C. London on Sunday, Dec 30 (to stay over north of town that night).

Come one and come all if you are going to be in town... I'd love to meet the UK gang!

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

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #7 on: December 31, 2008, 08:30:53 am »
well, this am, we had a lovely UK AN brunch!  I actually got to meet the first Husband/wife AN couple yet.... (she had surgery on her's... he is recent diagnosed and now beginning research).  There was another lovely lady who had GK on her's approx 1 year ago... and then, there was our JeWeL and her mum.  I have to admit, what hugs I got from everyone here (they aren't use to 'Merican hugging as much, but they let me... :) )

I have piccies but have to wait until this weekend to post them as I left my camera cable for uploads back home.  I learned a lot about the UK NHS/healthcare system and issues... and have a better understanding of the frustrations that patients have here in trying to obtain good healthcare (not everyone runs into it but there does seem to be a major issue with long timeframes of trying to get dr appts and such).

To JeWeL and her mum and everyone that attended this am.... thank you! A VERY hearty thank you! JeWeL, as I had NO clue the distance you drove and for that, a very special thank you.

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

leapyrtwins

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #8 on: December 31, 2008, 09:24:06 am »
Phyl -

at times I am so jealous, you get to meet so many ANers.  You are a true AN ambassador and I envy you.

It's fantastic that you got together with this group - and the husband/wife patients has to be a new first in the world of ANs (at least I would think so).

Looking forward to the pictures.  Have a safe trip home,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

JeWeL41

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #9 on: December 31, 2008, 11:42:21 am »
Phyl - it was great to meet you and the others this morning. You are all an inspiration and I will definately be more proactive in my dealings with the docs from now on - until they diagnose me with something!!! Have a safe trip home.

Julie
Sudden hearing loss Nov 2006 (left), tinnitus, fullness,imbalance, left side headaches and strange sensation on that side of face - but not AN!
Diagnosis - SSHL. Bouts of spinning vertigo now!
Saw Prof Ramsden (April 08) and it may be Atypical Menieres with Migraine Syndrome!

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #10 on: January 01, 2009, 02:17:00 pm »
Julie,

You know that your mum and "mum" and everyone that was there is cheering you on... you have taken ownership of your situation.... it's about time the dr's do as well..... what an absolute genuine pleasure to meet all of you....

Jan, so... if I am the AN ambassador...... and if I'm going to the symposium next....oooops... THIS year...... I think I'm gonna be in trouble! :D

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

wendysig

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #11 on: January 02, 2009, 05:37:23 pm »
Hi Phyl,
It sounds like your trip was great.  I'm looking forward to seeing your pictures when you get home. 

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

ppearl214

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #12 on: January 09, 2009, 06:54:19 am »
well... as promised (although a little late).... below is an official piccie of the UK AN brunch..... in order of appearance:

Front row: Mum-in-law Margaret (yes, the bloke's mum), me
Back row:  Julie (JeWeL's) mum (I'm so sorry I didn't hear her name....), Julie (JeWeL), Bernadette and her husband Geoff (yes, the married AN couple), Catherine



Have been hearing from everyone and they are doing well and enjoyed the meet... hoping to meet up with everyone (and more!) during my next trip over!


Phyl
« Last Edit: January 09, 2009, 07:09:30 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

cindyj

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #13 on: January 09, 2009, 09:37:13 am »
Great pic, Phyl!  Know that was so nice to meet with those folks. I'm still very jealous that you got to go over there - shameful, I know... :-*

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

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Pooter

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Re: Ok, time to meet the UK AN'ers!!!!!!!!!
« Reply #14 on: January 09, 2009, 01:19:20 pm »
Great pic!  Thanks for sharing!  Meet ups like this are great, aren't they?  I'm still floored by the married couple both with an AN and sisters with an AN.  To me, that certainly smacks of an environmental cause of some sort.

Thanks for the pic!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
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