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#100965 - 08/06/09 01:54 PM Re: Don't you just hate it when...? [Re: ChristineB]
MikeG Offline
Gold Member (200+ posts)

Registered: 10/23/06
Posts: 209
Loc: Ohio
I'm guilty of being the type who tries to say something positive.

The hardest lesson for me to learn is:
Be there, shut up and just listen.

ginny
_________________________
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.

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#100969 - 08/06/09 02:04 PM Re: Don't you just hate it when...? [Re: MikeG]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
thank god for people like you Ginny, otherwise who would there be to listen to loudmouths like me wink
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

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#100975 - 08/06/09 03:20 PM Re: Don't you just hate it when...? [Re: EzJim]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
When you waited 7 excruciating days to get the results of your first post Tx scan and there's a SPOT and your trusted doctor calmly says "It's probably nothing, let's wait another 3 months and take another look." Yeah I'll sleep better now!!
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#100982 - 08/06/09 04:48 PM Re: Don't you just hate it when...? [Re: davidcpa]
AmyK Offline
Senior Member (100+ posts)

Registered: 09/30/08
Posts: 130
Loc: Florida
"But you didn't loose your hair?" (and I wonder if I'm the only one that wishes sometimes that I had lost all my hair.)

And my dear friends it is not that I do not WANT to eat it is because I CAN NOT eat. It doesn't matter how good of an idea you think it is, anything thicker than water is going to get stuck in the back of my throat and not move. SO QUIT ASKING WHAT I'M EATING!!! And if I've tried (whatever) Believe me, I have.

Amy
_________________________
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009

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#100989 - 08/06/09 06:22 PM Re: Don't you just hate it when...? [Re: AmyK]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
My husband's "passion" is cooking. He is always watching the cooking channel even through all his treatments and loves trying new recipes. Yes I do know how to cook but I don't really like to and since he does, he has ALWAYS cooked our meals. When John became unable to eat by mouth which lasted for about 4 months I did manage somehow to cook and keep myself alive. John has lost 30 lbs even with the PEG which was removed in July. He is now eating again but it is a struggle. He has no appetite and food that he used to love doesn't taste the same and worse yet is the texture of foods.

More than one person has said to me "you just need to learn how to cook John some good meals and fatten him up". So evidently John's lack of taste, appetite and desire to eat and gain weight is due to my inability to cook. I don't know how I kept my 2 kids alive for 7 years while I was a single parent. smile
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#100990 - 08/06/09 06:51 PM Re: Don't you just hate it when...? [Re: slim]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Amy, to eat food they can have my hair too. Just one burger, one steak, tosat and bacon with eggs, geez, there are are many things that I haven't tasted for many moons.
_________________________
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

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#100991 - 08/06/09 06:52 PM Re: Don't you just hate it when...? [Re: EzJim]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
I do have to add this, I am alive if the opportunity presents itself.
_________________________
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

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#100995 - 08/06/09 07:08 PM Re: Don't you just hate it when...? [Re: EzJim]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
Here are some things people have said to me that really made me want to cut their tongues off.
"Are you sure the students will understand you", I said "Do you understand me?"
By the same person, "I know I upset you about my comment the other day, but you have to admit you do sound funny."

Another one was, "You sound worse today then you did yesterday." That really made feel like I was getting better.

I had several people as ask me, "Could I see it?" My response, "You won't see anything, it was all cut out."

4 months out and I am getting sick of people asking me how I am doing. I just want to move on and quit being reminded of what I went through from other people. You know?
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#101000 - 08/06/09 08:56 PM Re: Don't you just hate it when...? [Re: walknlite]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8309
Loc: Gulfport, Florida
Angelia,

Not to break this funny thread but I am 3 years out and they still ask me "So how are you doing?". I just say "great, couldn't be better, how about you?"
_________________________
David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#101017 - 08/07/09 12:33 AM Re: Don't you just hate it when...? [Re: davidcpa]
TomT Offline
Senior Member (100+ posts)

Registered: 08/11/08
Posts: 100
Loc: Minnesota
OK, I will be a little two faced here.

First, I will also admit to asking "How are you doing" but I think it comes from not knowing what to say or how to offer to listen if there is something the person wants to get off their chest. For those better with words, is there a better way to convey concern, compassion, etc.? I also know that I had no idea what cancer meant just over a year ago. Although, I knew some people that had the dang thing, did not know what life was like day in and out and outside of spending a couple of weeks with them, don't think I could have known what they were going through.

I know I hate that, "how is Pam doing?" or "doing today". I would like to answer with go read her CaringBridge website and get back to me but constantly end up with trying to decide what to share with the person. Is there any good answer for people with good intentions without going into a 10 minute conversation or the "doing well"?
_________________________
Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle

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