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#147984 - 04/08/12 10:23 PM No Easter dinner for husband
terrib Online   content
Senior Member (100+ posts)

Registered: 02/05/12
Posts: 138
Loc: MN
I feel so bad for my husband, treatment ended last Wednesday and he hasn't even tried to eat anything this week. Felt bad going to a friends for Easter dinner knowing he can't eat. He sure has a wonderful attitude, I would be feeling sorry for myself if I was the only one not being able to eat. He has been amazing!!! I am so proud of the way he has handled 3 surgeries and radiation/chemo that has filled our lives the last six months.

The thought of food is too nauseating and nothing tastes like it should. He would love a glass of cold water but it tastes like salt water. Tried a sip of grape juice and made aweful faces and couldn't drink it. I am worried if it will ever be normal but isn't some things the "new normal after radiation"? Have sure noticed that I don't need to buy much in groceries. My son and I are using up things in the freezer and I sure don't spend much time cooking like usual.
_________________________
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.

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#147985 - 04/08/12 11:29 PM Re: No Easter dinner for husband [Re: terrib]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7935
Loc: PA
Terri, your husband needs lots of time and patience with relearning to eat again. With only finishing treatments last Wed, there has not been enough time for him to recover or to heal yet. The radiation is still working and probably making him feel pretty lousy. Im happy he has such a good outlook and attitude. hats about all that can be done right now is to think positive and push the nutrition, protein and hydration. Give him a few weeks and he will slowly begin to be able to eat again. This period right now is not the new normal, it is his period of recovery. The new normal will be what he is when he hits the 2 year post rads point. Your husband will return to close to what he was before, it just takes lots of time.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo hospital extended stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147988 - 04/09/12 12:28 AM Re: No Easter dinner for husband [Re: ChristineB]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Christine is absolutely right about him not feeling very good right now. None of us did right after radiation treatments ended. In fact the worst time for me were the two weeks after radiation. I had managed to eat food during treatment which not everyone does, although it was getting hard the last week and a half. But afterwards--way worse, mouth sores were the worst. He may feel worse in a few days than what he does now. That would be the normal course of events.

A year later, I am eating food and enjoying it. Not like before, but most of it tastes much better. I am hopeful that it will be better yet. My doctor says yes it will (again just as Christine wrote)that they see improvements in areas such as taste much later than this. To one accustomed to good health (that would have been me prior to all this) it is difficult to imagine that it would take so long to recover but it sure does.
I hope that knowing this will help you and your husband feel better about where he is now in recovery.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#147992 - 04/09/12 01:03 AM Re: No Easter dinner for husband [Re: AnneO]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2504
Loc: TN
The two weeks post Rad TX were the worst for my son, too. It took a while for his tastes to return to normal. But after those two worst weeks just after treatment ended, there were gradual improvements and we celebrated each small new taste that he was able to enjoy. I remember once when he tried to eat a gourmet jelly bean I had gotten for his 5-year old daughter and he was so surprised that he could taste it, his daughter and I danced around the kitchen yelling yay!! Each improvement along the way is so encouraging and gives more and more hope for more good days to come! It's wonderful that your husband has such a good attitude with everything he has been through. He really sounds like a great guy! Just hang in there and soon the worst will be over and you can start seeing more and more good days ahead. Stay in touch and keep us updated.
_________________________
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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#147993 - 04/09/12 01:22 AM Re: No Easter dinner for husband [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 481
Loc: NW Ohio
Terri, I still can't eat a lot, and I am nearly 3 years out of treatment. We met our daughter and son-in-law for Easter dinner today at an Italian restaurant. The servings are so large there that I didn't dare order a full dinner, so I had stuffed mushrooms (and took half of them home) but I also had a wonderful creme brulee. It does get better, because I can eat some solid foods now, but at least, hey, I'm a cheap date! Hang in there; he will eventually get to his "new normal."
_________________________
Female, nonsmoker, 68, 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, looking at a very invasive surgery which will involve lifestyle changes.

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#148026 - 04/09/12 07:26 PM Re: No Easter dinner for husband [Re: zengalib]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
Well it's been 2 yrs since Ron's last surgery that he had Radiation and he is finally really trying to eat more solid foods with only his flap and no teeth either. Would you believe he ate a very very thin cut rib eye steak on the grill with a slipper lobster tail on the grill also on Saturday???? YEP he was happy chair dancing as it was going down, he pretty much has to swallow the food whole but he was so happy to finally eat a steak!! I just wish he would cut the damn pieces smaller but he says they go down easier. I got the little pc of steak he couldn't finish and he was stealing my lobster off my plate! I should have made all 4 of them lil lobsters, oh and he put steak sauce on the steak too. But he had such issues before, all normal with taste and that damn everthing either burned or was salty to him. It takes awhile so be patient. Oh and Baked Beans he demands I make a small roaster full every week with LOTS of bacon and he eats that all week til gone. So happy!!
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148027 - 04/09/12 07:33 PM Re: No Easter dinner for husband [Re: terrib]
mick Offline
Contributing Member (25+ posts)

Registered: 02/16/12
Posts: 26
Loc: boston,ma
it took me a year after i finished radiation before some of my favorite foods tasted good again. tell your husband to hang in there, the worst is over. it is great that you are so supportive, but lose the guilt over the idea that you shouldn't enjoy eating.
_________________________
after 3 sarcma flr mouth,fially removed, reconstruct from thigh muscle. 1/2 saliva glands removed, plus more glands than i can remember

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#148033 - 04/09/12 08:46 PM Re: No Easter dinner for husband [Re: mick]
KP5 Online   content
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 789
Loc: NY
Agreed. I went through the guilt thing when Kev was feeling so bad. I would hurry and eat and then have wicked indigestion. It was really a hard thing to get past. I'll never forget when he sat at the table and had a little bit of dinner, when it had been several weeks since he had done that, our 12 year old had an ear to ear grin and said " I'm glad you're sitting at the table with us Dad. I missed you." Made me cry. Still does.
Tell Jeff to hang in there. Will PM you later.
Love you girl,
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 10/2012

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#148753 - 04/25/12 07:25 PM Re: No Easter dinner for husband [Re: Anne-Marie]
defeatingin2010 Offline
Member

Registered: 04/20/12
Posts: 16
Loc: TX
Your response to the jelly bean brought tears to my eyes. Our family has enjoyed miles stones such as yours. I'll never forget the time my daughter and I heard my husband sign after treatments. We looked at each other and just cried with joy.
_________________________
T3 N3 squamous cell carcinoma of the right base of tongue. He was treated with induction chemotherapy followed by definitive chemoradiation, which he completed in December 2010. non-smoker, non-drinker.

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