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Eating and coping with recovery

Mary Ann
Posts: 4
Joined: Mar 2010

Hi, My name Is Mary Ann. I just had my 4th surgery for oral cancer. It has been 7 years since the last tumor, and I guess I really thought I would never have to do this again. My story is long and and I won't bore you with the details. I just would like some suggestions about eating. Also being seen in public. I will look better eventually, but I am embarrassed to seen and I need to get over it. Any suggestions would be appreciated. Gods Blessings to all

sportsman
Posts: 98
Joined: Feb 2010

Mary Ann: Looks like your relatively new to this site. I can't imagine having to deal with cancer this many times in this period of time. I am now just a little over three years out of radiation and chemo treatment for throat cancer. I was in perfect health before being diagnosed and when I found out I had cancer it was like a bomb had been dropped on me. Not only did it effect me tremendously physically, it also effected me mentally. After dropping so much weight and losing muscle mass that I had worked many years to build, I looked and felt almost like a skeleton. I was embarassed to be seen by my friends and did not really want to go out in the public. What I have found out on this web site that there is always someone much worse off than I am. This is a very helpful web site with good information from our friends that suffer with this devastating form of cancer. Good luck and God Bless and keep fighting. I am not what I would like to be but I just can't give up.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

7 years! Trust me- you will not bore us with your story. Would like to read it, as I know many others would. Exactly which C did you have? I'm Nasopharyngeal, as are a number of others. Hondo, for instance, is NPC, and some 7-years with two treatment bouts. And there are a couple with more tenure, like NamVet. I'm only 16-month, so a relative rookie.

As for eating- the staples are the liquids Ensure and Boost. I am the chef-style salad fanatic w/French dressing.

As for the public thing, MA- realize that your battle scars are proof of the battle you have fought, and are winning. If anything, whatever scars you wear only threaten those you meet in public- because they are proof of how much easier in life those people have had it, compared to you. No matter how they react to you: the bottom-line is that your scars are proof, to them, that they've been living on easy street, compared to you, and that reality is the only thing they are having problems with. The problems are their's, Mary Ann- not your's. If they react in a way that upsets you, please understand that their reaction is a product of either their unhappiness with their own lives, and/or they need to react as they do to feel better about themselves. Again- they are the one's with a problem.

And yes, 7 years!!! That sounds rather grand, actually.

kcass

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Kent and Mary,

Thanks Mary for bringing up the subject of self consciousness. As posters over time have noted, the always available, "well at least I'm doing better that that guy or that gal," is still in play, and there is nothing dishonorable in it. But Kent, you are definitely right in encouraging people to take a step in an effort to emulate your method and your care and understanding. A better understanding of ourselvews and those aound us can be a valuable "leg up" in the fight to acceptance and care.

Sometimes it's simply misinterpretation. I was in my bank one day, when that simulanteous nausea and body overheting that leads directly to the bathroom hit me. Banks don't have public bathrooms, figured they wouldn't. Didn't matter, I needed one a-s-a-p. I told the teller what was up, and with only a instant of confusion on the teller's part I was led by the security gaurd to the innards of the bank, where there was in fact an employee bathroom. I could undertand the looks of the employees as I shuffled by the desks and counting areas on the secure side of the bars. I realized I was the only one on that side wearing a knit cap in the middle of the day, and jacket, who appeared to be rather in a hurry. I quelled the urge to stop at other desk and briefly explain that I was not a bank robber, only a cancer patient, but I didn't have the time to spare and that might have added to the confusion. I didn't feel embarrassed long, and I'm sure as word got around, the employees could feel compassion for my situation and my need, very likely creating an increased awareness on their part. Without their understanding I COULD have been in an embarrassing situation.

Thanks Kent, for your always enlightening and informative posts. I literally just finished my rads so I'm waiting for my mouth to heal and want to get to back to the salads with French dressing I was raised on. If you have any recipes that would make those crisp greens more palatable as my mouth heals . . . Iceberg with flecks of carrot, and cucumber, floated lightly on a shallow pond of bright orange French dressing. That's American! {for a brief period of recovery anyway)

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Tonight was Turkey Cobb, with tomato, bacon, onion, cobb cheese with the lettuce, and the notorious orange French dressing. Every night, Hal- one chef-style, or another. Where you are- pancakes w/Log Cabin was the first non-liquid, and lots of butter. Took a couple months after the last rad, then tried a chef-style w/ham and cucumbers, cheese and tiny onions, and turkey: the rest is history.

Glad to hear you're done with physical battle of treatment, Hal. Congratulations are in order. All of us, my friend, are very happy for you. Know it.

kcass

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

I love salads and french dressing.
I am having a problem with salad dressings burning. Have you had any problems with that?
Any brands work better than others?
It was a jello and boost kind of day here...(not to complain..4 weeks ago it was an IV only kind of a day on most days) I have gained 6 pounds and am 10 lbs away from pre diagnosis wt.
Lowest was 89 and tubes were mentioned if I got any smaller..but it was OK

Looking forward to a salad with french dressing,
Stacey

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Hal
Great to hear you are doing good.

Hi Staceya
You are still not far enough out of treatment so it might still burns a little it will all get better in time, I am now able to eat hot peppers, I love the heat

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I cant wait for my boyfriend to start eating ceasar salad again. He makes the most amazing
ceasar dressing!! I cant wait to share a meal with him.

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Looking forward to continued improvement.cannot IMAGINE eating hot peppers now, but I never ate hot peppers before either :)

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I dearly love my hot peppers, to the point that I grow my own nuclear-strength habaneros in our vegetable garden. I dice them on my salad, and my wife and I can our homegrown tomato sauce that's seriously jacked up with habaneros. (Definitely not for civilians!)
The summer I was diagnosed with cancer we wound up composting all our peppers, and for many months after treatment even ketchup was too spicy for me. A single grain of cracked black pepper would light me up.
But a year later I was back growing my beloved peppers, dousing my food with hot sauce and eating everything I used to eat before cancer.
In short, life is good.

--Jim in Delaware

CajunEagle
Posts: 352
Joined: Oct 2009

One of the Gazillion traditions down here in South Louisiana, is to peel and eat boiled Crawfish on Good Friday. Bet I've consumed at least 250 lbs. of those things since living here for the last 30 years. Being only nine months out of treatment, I tried to eat one the other day and bout blew my head off. I'm looking forward to next year. LOL !!

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I long for the day when my boyfriend Paul can eat a meal with me again.
Hopefully even taste it all. Told my mom the other day, you never realize
how eating normally is such an important and integral part of socializing,
spending time with people, etc. Not just a function for sustaining health.

Keep praying he too makes this progress as so many of you have done. I miss
eating with him.

thegirlfriend, Kathy

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

you really need to tell me again now how important it is for my shoulders to be very very broad, and to have more patience than Job, and to just try and be understanding, and
remember that i am able to eat when someone else cant. It is becoming increasingly more difficult to to stay in that frame of mind when i have thoughts of wanting to ring a neck,
a nicely healed from burns neck that is.

The boyfriend is in a vicious circle right now and he is ringing me around with him in
attitude, despair, unhappiness and mind you, thats with him trying to restrain himself.
Remind me again, he will get better. Remind me.

He cant eat because he cant get the real food down, it sticks from no saliva. If he tries to wash it down, he gags or chokes cause its too much at one time he says. He is fatigued always because he has no fuel to speak of with exception of protein meal replacements, soups maybe, boost, and liquid multivitamins. Those things run right thru him, even if taking fiber, so none of it sticks around long enough in his body to fuel him even with that. So you see he is running around in a circle and isnt feeling like there is any change in view. Throw on top of that the thrush he continues to fight.
He has become more angry. He is a man of a spiritual nature, has a relationship with the Lord, but just isnt happy with His decisions as of late with this food thing. So he is more and more in a foul mood. He tries to keep busy, but cant find anything that really inspires him to do things because he is so aggravated.

sorry just needed to vent

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I do not think there is any better place to visit. Your story will be welcomed here. As noted, I am also a NPC survivor. Although I visit this forum, I do not post as much. Since we are speaking of food, let me relate a portion of my breakfast menu. Some may have read it, but it does not hurt to repeat.

Unlike many survivors, my saliva did not improve. I have no qualms and am just happy to be around 12 years later. We seldom go out to eat because of the swallowing problems. Here is some of my breakfast options.

Oatmeal with milk. Two eggs over easy. Toast dipped in coffee. In the rare occasion I am in a restaurant, I slice the toast in the plate. I pierce it with a fork and dip it in the coffee. At home, I just dip the toast in the coffee. I may supplement my breakfast with a can of ensure. (Separate subject but most ex military are eligible for VA care. Ensure is a VA prescription item in our area. Most prescription item co-payments are eight dollars. My prescription is for two cases so that is 48 cans for each refill. If you have private medical insurance, they bill them so the ensure is free)

Back to the subject. I do not like the taste of ensure so I use different methods to hide the taste. A breakfast alternative is to place a small amount of water in a cup and dissolve a teaspoon of instant coffee. I pour the ensure in the cup and heat it in the microwave.

I like to travel so another option from the menu is pancakes with a small glass of milk. I butter the pancakes, then slice it to pieces. I pour the milk (amount depends on ability to swallow), pour syrup and eat away.

For meats, I may eat the thinly slice package of hams, baloney etc.

Here's wishing you the very best and hope the above will help you along on breakfast. Come back again and I will give you my lunch options.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

LOL, you have a rough road right now Kathy....

When I was at my worst and couldn't eat anything, my wife had to suffer as well, LOL.... I'd get upset with her if she went out to eat lunch with her co-workers...LOL. If I couldn't enjoy food, she couldn't either.

Everything pretty much bugged me and I was a butt must of the time. I remember getting upset because she was making too much noise taking a fork out of the drawer....she eventually would let me have it though.

Be patient and understand it's not personal...easily said after the fact I know.

God Bless,
John

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

thanks for the encouragement. I guess its times like this its probably better to live 8 hours away! but 98% of the time i wish i didnt. I read here all of the time to get suggestions for him, probably good he isnt on here, i wouldnt have my privacy here anymore for sure!! lol! He is not really a computer person, has no internet at home, so no real worries. :)
If he hears my tone become different, he will sometimes say, ok change the subj, cause he feels a pointless confrontation bubbling. He is commonly referred to as grumpy, because he can be so serious. Ex military/ex cop is sometimes like that. So this last year has really added to his seriousness. I have had lots of patience yet lots of guilt when i eat in front of him. He is an awesome cook (cooking school awesome)so the only remote reason i dont just refuse to eat in front of him is because he wants me to enjoy what he makes. talk about torn right???? lol!

Hawvet, thanks for the food suggestions. I will email him with it to see if he maybe will pick up on some of it.

thanks again, just needed some refuge from the fallout. I really appreciate anything and everything anyone can contribute. (sigh)

Kathy
thegirlfriend

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

You and he are going through so much at the moment. I too can be a grump (just ask my wife), and I'm sure I was difficult to deal with when I was at his stage. It's just so difficult for even the dearest loved one to truly understand what he's going through.
All I can say is, please be patient with him. If his experience is anything like mine, he'll get better.
Not only will he get better, but he'll emerge from this a better person.
Keep the faith.

--Jim in Delaware

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

Thanks Jim, I get scared that his faith is being so tested, and his anger will contribute to his recovery. From stress you know. I want to understand, but the only way would be for it to happen to me, and I know it would upset him for me to say that.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Trust us, Kathy- we all emerge as better people. Yes, maybe it takes a little encouragement for that better person to become evident, but that better person is fact. We all know it- all of us who have lived the battle, first-person.

Believe

kcass

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

I do believe and even though i have had faith, it doesnt mean i wasnt scared that the worst could occur. But now it feels like believing is almost not enough. I dont think I can do any more for him but that. I want to. Its my nature, and was my job for 24 years, to fix problems. He too was always the hero, navy corpman and then cop. how much more hero do you get? The shoe is on the other foot now it seems (again).
He has known humility ever since his journey to God saved him so long ago. So many questions, not enough answers fast enough I guess.
He became a better person long ago thru trial and tribulation, and Im sure you are right, he can be even better.

thanks Kent and everyone

K

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