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#161884 02-20-2013 02:18 PM
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My fiancee has been diagnosed with tongue cancer. I have had a difficult time and I feel that I am losing friends. I guess they just don't want to be bothered with what is going on or can't really handle it. I guess you really find out who your friends are.

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True friends do show themselves in your time of need for support. Lean on those there for you and your fiance for the support you need. Those are the ones that truly care! My husband and I have lost many so called friends during my battle with cancer last year. Most don't know what to say or do so it's easier for them to step away. True friends will stand by you both!


Ima Pierce
Mucoepidermoid Carcinoma T4A N2B MO Stage IV-A
Lost right palate of my mouth. An opterator closes the gap between my mouth and Nasal Cavity. I have sinus infections/swelling on my right facial area. I can not open mouth enough to get a spoon in. All lymph nodes in my neck/chin are gone.
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How hurtful that is. I have no patience for those who step away because they don't know what to say or do. I don't care about their discomfort, which is nothing compared to the experience of a cancer diagnosis. You have many friends here, Grammieshiela, with lots of support and advice from people who know what you're going through.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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It is hurtful when friends and family are standoff-ish. I sent out email updates during my husband's therapy, and never understood why some of my in-laws never bothered to reply at all. However, I have learned that others on the list were glad of the updates but literally had no clue how to respond. Others were terrified by the updates aa it meant facing their own mortality.
All the best to you and your finance during this difficult time.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Sheila,

I had the same experience when I was diagnosed, and people I never expected to be supportive were totoally there for me, and then others dropped out of sight.

Looking back, I can really say that I was glad to figure out who was "true blue", and worth my time and friendship.

Just don't be too quick to write people off, as some just need to wrap their brains around the issue and figure out what to do or say to help.

Good luck, and of course you have a lifetime of friends here, even if they are new and only on a page.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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We had the same issues. Women closest to me were just...gone. My sister set up a helping hands account for us for meals and ironically most of my friends didn't help at all. But, people I didn't even know brought meals, send gift cards for meals, it was crazy where the support came from. The funny thing is some of these women have never contacted me since either. I think they are embarrassed for disappearing and don't know what to say now. I have to say I harbor some hurt still so haven't contacted them either, and we are a year and a half out of tx!!
Hang in there, you will make new friends because there will be others who KNOW exactly what you are going through...like us!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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I think we all have had issues with people who aren't supportive. Sometimes it's due to their own fear. My sister in law practically ignored my condition only asked me maybe 9 mos ago how is was - I finished treatment 21 Mos ago. smile but in the end you get what you give.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
KP5 #161957 02-22-2013 06:58 AM
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[quote]The funny thing is some of these women have never contacted me since either. I think they are embarrassed for disappearing and don't know what to say now. I have to say I harbor some hurt still so haven't contacted them either, and we are a year and a half out of tx!![/quote]Have you considered reaching out to them? I am starting the journey and only a few have sort of gone deaf but I guess my innate sense of good leads me to try to reach out as I know I have been on the other side too -- not knowing what to say to ppl and it was surely not because I did not care, just too aqward or loss of words.
Sure seems like good friendship is worth a short call or note.
don

Last edited by donfoo; 02-22-2013 06:59 AM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Don makes a good point. We do not know what is going on in our friend's heads when, for whatever reason, they can't respond. The clueless can be taught and the fearful can learn courage - whether it is by us (if we have the strenght at some point) or perhaps by someone else. The world is a very strange place. You never know when a kindness will take root and blossom.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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I think with technology there is no excuse for friends of family not to make contact and check in on someone dealing with illness, especially a life threatening disease. Making a weekly or fortnightly phone call to a patient�s partner or carer is easy if friends aren�t comfortable about visiting.

When my speech was mumble jumble and I could barely communicate face to face or via telephone receiving text messages or emails from friends or family lifted my spirits.


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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