#2703 06-08-2004 06:07 AM | Joined: May 2003 Posts: 102 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: May 2003 Posts: 102 | I don't write much but I do read the questions and answers all the time for my Aunt Rosemary (T3N1MO) who is 13 months past her diagnosis and surgery for SCC of the tongue, salivary gland, floor of mouth and right lymph node. She has a hard time dealing with all this every so often. It all gets to her sometimes, especially times like now when they are CAT scanning, PET scanning and doing biopsies and still have no answers. We are very close and I speak to her as much as possible but I am not a survivor. She can really use either a live support group, or to speak to a survivor to help her through the rough patches. Since we don't seem to have any live support groups for people with Oral Cancers here on Long Island, are there any members of this list who live on the Island and would be willing to talk to her? She feels very much alone in her situation. As much info and news as I can relay to her, it's still not the same as speaking to someone who has gone through this themselves. She doesn't own a computer yet.
If there is anyone who is willing to lend a few words of encouragement and support, please contact me personally via e-mail and I will forward your contact info to my Aunt. I would be very grateful.
God bless you all on your journey. I will continue to include every one of you in my daily prayers.
Sincerely,
Lisa S.D.
Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
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#2704 06-08-2004 11:36 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Lisa,
There is, I'm not a "support group" type but I get the news-letter. I'll email the numbers when I dig them up later tonight, I'm short on time right now. Short on time because I have to run out.
Glenn | | |
#2705 06-08-2004 05:56 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Lisa, Here is a listing of all the chapters for SPOHNC (Support for People with Oral, Head and Neck Cancer), a support organization. I noticed there is a specific chapter and contact for Long Island. http://www.spohnc.org/localchapts.html I hope this helps and God Bless You for being there for your Aunt. Feel free to email me if you have any questions and even though I am in Texas, I would be glad to call her. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#2706 06-09-2004 01:31 AM | Joined: May 2003 Posts: 102 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: May 2003 Posts: 102 | Dear Glenn,
The contact information for a newsletter would be good too. At your convenience, please send me whatever you have. Helping her feel connected is what matters now. Thank you!
Dear Ed,
We will check on the progress that our local chapter of the SPOHNC may have made in the last year since her diagnosis. There wasn't an actual group back then. They were still getting organized and there wasn't enough people to have a monthly meeting. Thank you for being so kind in offering to speak to her. I am going to print out and forward all of the e-mails I've received to her and let her decide. I would do anything for her. She's a very special lady.
God bless!
Lisa S.D.
Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
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#2707 06-09-2004 03:28 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Lisa,
Maybe her hospital has something in the way of a general cancer support group. If not, get her a computer, this place works pretty well!
Glenn | | |
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