| | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 27 | Dear OCF users and supporters,
I would love to locate any people from EU within the forum.
I live in Italy and was kindly informed by Christine that only few people from the 'Boot' were here.
Any friends from France, Uk, or else in the Continent by any chance?
Would like to share info/opinions and would love to help by all means.
Best to all.
Lulu
"The middle of the night is the beginning of a new day"
L. Da Vinci
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | There are a couple from the UK. I think we have one person from France, she rarely posts anymore, darn it! Hope you find some people who are closer to you.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There are quite a few from Australia if that is of any value. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Love you to bits Jim but you gotta know they don't call us downunder for nothing  It takes around 22 hours to fly to Europe from most of our States in Oz. I know I have done it quite a few times. That being said we have people from all over that have settled here just as you have in the US. Many of us speak a second language. Lulu we are very international here and your writing is just fine. I think one of the biggest comforts in finding someone in your own country is they will understand the medical/hospital situation. Good Luck Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Gabe, I have an idea you are ahead of us in all areas now. LOL Even with the attitudes that I just luv to see. Luv ya lady.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 27 | Thanks for postng, nice reading you all, and yes, it does sound like a very intl community. I spotted someone from UK, not from France yet. For sure the point is mainly concerning the medical centers. And yes, traveling to Australia from EU can be quite engagine (despite I happened to work with Au/NZ, I never did, but would love as I heard so many enthusiastic comments). All the best and thanks again for cheking in. BTW, Christine, you are a star shining in all posts, how come? Such a watchful eye, thanks for being here Lulu
"The middle of the night is the beginning of a new day"
L. Da Vinci
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | We have Liz and Helen c. both from the UK on the board from time to time. Find one of their posts and send them a PM.
You are from France? When you mentioned Sachertorte I thought you were from Austria. Either way, both countries have exquisite cuisine, no wonder you are so frustrated. I don't think I ever had a bad meal in either one.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Mar 2011 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2011 Posts: 27 | Hi Eileen,
Thank you so much for the names, I'll treasure them and will make sure to be in touch as soon as I learn more from my situation.
To answer your question, I'm from Northern Italy (which makes it also quite tough to be appetite-less). Still, I loved Sacher in my healthier days (did you know that there are just 2 places where the original one - with its beautiful box and decoration is produced and sold: one is of course in Wien at hotel Sacher, and the other one is in Trento, in Northern Italy?).
I read your other posts and the delicate description of your husband Charlie and am aware of your recent loss, which is why I send you my thoughts and thank you twice for taking the time to read me.
I hope everything will be for the best and that you won't find my words too intrusive.
Thanks again, and you also take care of yourself.
"The middle of the night is the beginning of a new day"
L. Da Vinci
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Lulu,
Thank you for your thoughts and best wishes.
I did not know that about Sacher. I know we ate it while in Vienna and I thought we had it at the Hotel Sacher but I do not remember a beautiful box and decoration, something I would not have forgotten. Oh the beautiful memories of those wonderful trips.
Most of us who have had radiation have gone through a period of losing our taste and appetite which lasted from a few weeks to years depending on the patient so can sympathize with your plight. Keep trying to get an answer on why this is happening. It may not be cancer but something is obviously wrong. There shouldn't be blood in your mouth. Could it be dental?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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