| Joined: Apr 2012 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 30 | I am looking for a support group in my area and wondering is there a site I can search to find one. I have searched American Caner Society and could not find any in my area. If no recommendation, any suggestions on starting one? Not just for oral but any cancer.
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012 So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Hey Pete!
One of the reasons Brian Hill created OCF is because he was dissatisfied with the support levels out there from other organizations. Following his cancer ordeal he felt he needed more support than the monthly meetings offered by other organizations, often times daily support.
Personally I live in a remote area of Idaho and don't have many options for support groups etc...especially for Head & Neck Cancers, which is why OCF has been such a resource for me. I've been able to connect with other patients and survivors here that I've carried over to Facebook and am able to connect more personally, There is a Facebook thread under the "Friends" forum that has a good list going. What I love about Facebook is not having to leave my house, I have it on my phone so I have almost an instant connection with the people of OCF I trust to give me good support.
I also volunteer locally for cancer support groups etc however I find I'm supporting others rather than myself at those, which is why I prefer OCF. I suggest contacting the local hospitals or cancer centers as they generally have more information on local support groups etc.
Hope that helps my friend!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Apr 2012 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 30 | Eric, the reason why I ask is because I like the physical interaction and the web cannot provide that for me. I have hidden way too much on the internet and have lost touch with friends because it.
Fred
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012 So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Definitely check with the local hospitals then, I think they will have better information on support groups locally.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Apr 2012 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2012 Posts: 30 | [quote=EricS]Definitely check with the local hospitals then, I think they will have better information on support groups locally. [/quote]
I talked to a social worker at the clinic I get treated at and I was told there used to be a group that met but it seems they have stopped meeting.
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012 So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Pete I don't know if this is the group that used to meet but it is still listed as current as of April 8th, 2012 at the Spohnc web site as a head and neck cancer support group NEW YORK-ROCHESTER Strong Memorial Hospital Luellen Resource Center, Patient Res. Ctr. 1st. Thursday: 4:30-6:00 PM Sandra E. Sabatka, LMSW 585-276-4529 [email protected]Hope this helps. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2005 Posts: 118 Likes: 1 | Pete, Do check with www.spohnc.org for your nearest support group. I have found that SPOHNC (Support for People with Oral, Head and Neck Cancer) provides practical and emotional face to face support for patients and caregivers.
Be well. Zenda 12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | Joined: May 2010 Posts: 48 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2010 Posts: 48 | Hello BuffaloFan, Wilmont cancer center has a head and neck support group the first Thursday of every month! I myself didn't really find the group very helpful; but it may work for you. One of the reasons why I didn't find the group helpful was that it was mainly a informational group; being a registered nurse myself I was hoping for a open group forum where we could interact with each other and talk about depression, anger, fears of the unknown, etc.! But sounds like this may be what you are looking for!
Charles
HPV +16 Right Tonsil SCC with 1 Right lymph node. Tonsillectomy and neck resection.
Got 33 radiation doses via tomo machine (58 gry to back of throat, 65 gry to right neck, and 56 gry to left neck) with 2 cisplatin and one carboplatin due to possible hearing loss.
| | | | Joined: Apr 2012 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2012 Posts: 32 | Fred, I too was looking for a support group. The hospital where I had my surgery did not have a cancer spt group, and I found one in the paper at a nearby hospital. I went last week for the first time (they meet weekly) and was warmly welcomed. Meeting in person with others certainly has another dimension to therapy. Good luck!! Ken
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr 1 mo sore throat w/neck lump 3/12 SCC tonsil, lym nodes 4/12/12 rad tonslctmy, mets in lymph nodes 5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer BSA Scout Ldr w/strng desire to live & beat cancer
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | The hospital where my son had his treatment had different kinds of "in person" support groups for cancer patients - one of them that I noticed was a "laughter therapy" group. Well, even though he is the type to have great sense of humor, this was one thing he didn't want to go to but he encouraged me to check it out. I didn't - because I thought - how could I laugh about anything without him? A few weeks later, I thought I would go anyway, but the nice lady at the desk said they had cancelled it. Cancelled laughter! That kind of depressed me for a while. I know everyone is different and we all react differently to things and whatever helps is a good thing. So, in addition to checking with local hospitals, you could check "groups.yahoo.com" to see if they had something for cancer survivors, or even start your own group. A friend of my son's met her significant other at a local hiking group.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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