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#134277 - 05/18/11 03:41 PM Re: Don't you just hate it when...? [Re: Charm2017]  
Joined: May 2011
Posts: 267
msmac Offline
Gold Member (200+ posts)
msmac  Offline
Gold Member (200+ posts)

Joined: May 2011
Posts: 267
california
My daughter was three months old when I had to get a pre-surgery EKG. The technician said, "I hate women like you who just bounce right back after having a baby. I still haven't lost my baby weight after 3 years." Um, yeah. Tongue cancer is a great diet.

After my second tongue surgery a lady at the garden store asked me where my "accent" was from. Said she couldn't quite place it. I didn't know what to say so I just told her I had oral surgery.

I think most people are well meaning. I remember when I was a teenager working at a music store a man came in who had a really raspy voice. I asked him if he had a cold and he said, "no, this is just how I talk." I was mortified. I certainly didn't mean to hurt his feelings. I just spoke without thinking.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
#138166 - 08/16/11 03:45 AM Re: Don't you just hate it when...? [Re: Pandora99]  
Joined: Aug 2011
Posts: 11
Momof3boys Offline
Member
Momof3boys  Offline
Member

Joined: Aug 2011
Posts: 11
Seattle, WA
Originally Posted By: Pandora99
I am not amused when people say that "you have such a great attitude about it" or "you are so strong". WRONG ON BOTH COUNTS!

There is no reply to those comments. I often feel weak and scared (as my OCF family knows and has experienced themselves). Where do they get this stuff?

Donna


I am only a few weeks on this journey and I hear those two things from everyone - even when a good friend is talking to me and my eyes are filled with tears, they still say "you are so strong" and all I want to do is scream or bawl. I am quickly learning to chuckle inside at the goofy things people say.


Found questionable spot in routine dental cleaning 6/28/11
Consult w/ Oral Surgeon 7/20
Lesion removed for Biopsy 7/28/11
DX 8/3/11 MEC (Grade Low2)
upcoming resection surgery 8/31
#138168 - 08/16/11 05:17 AM Re: Don't you just hate it when...? [Re: Momof3boys]  
Joined: Aug 2011
Posts: 269
ngk Offline
Gold Member (200+ posts)
ngk  Offline
Gold Member (200+ posts)

Joined: Aug 2011
Posts: 269
CA
i'm two months in and more than a handful of people have said to me "ohh cancer? really? my "fill in the blank" just died of cancer." i'm thinking"uhhh, umm, ok that is not comforting" and i just say "sorry." sigh. and my best friend just told me to "move on." (yeahhh, i don't think i will be moving on anytime soon) but yes tracy, it's true people are well meaning. what i've had to do is say to myself, this experience will teach me to be more sensitive and choose my words more carefully when comforting others. i know i've unknowingly said a lot of insensitive things in the past and probably will in the future. however, i hope those times are few and far between.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
#138217 - 08/17/11 01:09 AM Re: Don't you just hate it when...? [Re: ngk]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
I know what you mean about people saying how "strong" I am. I don't think that I'm strong at all. And I don't really have a great attitude, either. Most of the time, when I let myself think about it, I'm scared to death, even though I am two years out of treatment. There's always that fear that it will come back.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
#140941 - 10/02/11 06:14 AM Re: Don't you just hate it when...? [Re: Pandora99]  
Joined: Jan 2011
Posts: 7
JudiW Offline
Member
JudiW  Offline
Member

Joined: Jan 2011
Posts: 7
Tulare County, California
I too have lost weight. Was very overweight when this all began.
After the surgery in January, and especially after most of my chewing teeth were removed (I have periodontis) before radiation, I found I had trouble eating with the obturator. Had to drink.
Just when I was getting better with eating, and the obturator seemed tight, the stage 4 cancer came back in a lymph node and now I've had another operation, and food gets stuck in my throat.
I'm back to drinking. And sometimes it comes out my nose.
But... I have lost weight and can buy clothes where people say I am thin. No one has said that for at least 30 years! So I just love getting dressed. I wake up in the morning and thank God I am alive for another day. Start chemo and radiation for the second time this year this Tuesday.

#140947 - 10/02/11 03:46 PM Re: Don't you just hate it when...? [Re: JudiW]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
hey - I answered your other post! Sorry about the recurrence but please do try not to let it get you down! Christine and a few others have danced with this devil a few times and they managed to step on it's toes! You can too! I too lost 30 lbs. (21 after treatment) and another 9 over the past few months - mostly because I'm not eating any junk food (no sugar - no meat - no flour unless it's mixed grains - and even then I will have it maybe onc or twic a week only! smile getting dressed is a joy - but for the same reasons as you - just happy to be here an see another day! smile hugs! The weight loss is a bonus in a way but I would have prefered to do it without the "c" diagnosis!


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
#143234 - 11/23/11 02:17 PM Re: Don't you just hate it when...? [Re: Cheryld]  
Joined: Jun 2011
Posts: 188
Caco Offline
Senior Member (100+ posts)
Caco  Offline
Senior Member (100+ posts)

Joined: Jun 2011
Posts: 188
eastern us
"he's lucky to have you" is my all time favorite.

in the waiting room this week i heard a social work, patient (mom) and daughter behind me talking about her palliative care plans. "well i work full time and have kids and can't bring her here." my heart dropped for this woman. whole waiting area heard it (top cancer center no less)

totally annoyed with the balance of managing cutting edge therapy with really poor people skills.


Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
#144754 - 01/15/12 12:28 AM Re: Don't you just hate it when...? [Re: Pandora99]  
Joined: Jan 2012
Posts: 3
IreneMarie Offline
Member
IreneMarie  Offline
Member

Joined: Jan 2012
Posts: 3
Florida
My favorite was "where did you catch the BIG C.

I can't say the answer I said but I did say in your office.

#144769 - 01/15/12 04:57 PM Re: Don't you just hate it when...? [Re: IreneMarie]  
Joined: Mar 2008
Posts: 3,082
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)
Charm2017  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Alexandria VA
Irene

Glad you found this thread. It's long but I recommend reading all the posts - although in doses. Personally I find that reading how others have the same peeves and have had the same exasperating experiences helps me realize it's not personal.
Instead we are stereotyped as a cancer patient/victim/survivor automatically. Another reason to enjoy the OCF forum where we can be appreciated as persons.
Oh, and yeah, I liked your reply to the Big C query
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
#144770 - 01/15/12 07:02 PM Re: Don't you just hate it when...? [Re: Charm2017]  
Joined: Nov 2009
Posts: 493
zengalib Offline
Platinum Member (300+ posts)
zengalib  Offline
Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 493
NW Ohio
Nanci Griffith has recorded a song on her newest album called "Hell, no, I'm not Alright". The album won't be available in the U.S. until April, and in the U.K. in February, but the song is available on utube. Nanci is a breast and thyroid cancer survivor. The song isn't about that, but it does resonate with me, and is something that I often feel like saying to well-meaning people.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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