new and questions

Goegs
Goegs Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
Hey all! I'm new to the group. I finished up my treatments (35 IMRT radiation and 3 6 hour bouts with cisplatin) for cancer of the right tonsil and upper palate (T3N1M0) in January of 2005 I never had a feeding tube and consequently lost 40 of the 160 pounds that I carried on my frame. I've since gained back 10 pounds but still look like a concentration camp survivor. I can't stand to look at myself in the mirror.
My taste is just a fleeting memory. Where I once really enjoyed eating, now I just eat to survive. " The dinner was really good tonight honey." Yeah right, like I could actually tell. My wife looks at me like I'm from Mars when I tell her I can't taste something. So now I just play along like I can. It's very frustrating and I feel alone out here sometimes.
I go in for another checkup next Thursday and the anxiety is almost overwhelming. I'm keeping a positive outlook but it's not easy sometimes.

Comments

  • debra8940
    debra8940 Member Posts: 3
    #2
    You are not alone but I'm sure you do feel different sometimes. Don't lie to your wife, she needs to know how you feel. congrats on putting on weight! Most people don't do that for months after treatment. Hope your appointment went well.
  • Goegs
    Goegs Member Posts: 6
    #3
    debra8940 said:

    You are not alone but I'm sure you do feel different sometimes. Don't lie to your wife, she needs to know how you feel. congrats on putting on weight! Most people don't do that for months after treatment. Hope your appointment went well.

    Thanks for the reply. I'm not lying to my wife, I'm just not telling her what's going on. Here's an example of why I do it.The other night we had some sausage for dinner, I asked, is it spicy? She replied no, it's the mild. So I tried it and it was too spicy for me. She could not believe it, repeating to me it was the mild sausage and did not taste spicy to her. She thinks that "You've had the treatments, they're finished, you're cured, what's the problem." I share all these on-line stories with her from the ACOR website but it's almost like she's in denial. It's just less frustrating and easier on both of us if I keep my mouth shut. Oh well, this too will pass.
  • Emacornelia
    Emacornelia Member Posts: 2
    #4
    Goegs said:

    Thanks for the reply. I'm not lying to my wife, I'm just not telling her what's going on. Here's an example of why I do it.The other night we had some sausage for dinner, I asked, is it spicy? She replied no, it's the mild. So I tried it and it was too spicy for me. She could not believe it, repeating to me it was the mild sausage and did not taste spicy to her. She thinks that "You've had the treatments, they're finished, you're cured, what's the problem." I share all these on-line stories with her from the ACOR website but it's almost like she's in denial. It's just less frustrating and easier on both of us if I keep my mouth shut. Oh well, this too will pass.

    Hello , I have just finnished 25 treatments to my tonsil and lymph node. After seven weeks my togue is turning black , has anyone experienced this? Thanks
  • Christmas
    Christmas Member Posts: 100
    #5
    Goegs said:

    Thanks for the reply. I'm not lying to my wife, I'm just not telling her what's going on. Here's an example of why I do it.The other night we had some sausage for dinner, I asked, is it spicy? She replied no, it's the mild. So I tried it and it was too spicy for me. She could not believe it, repeating to me it was the mild sausage and did not taste spicy to her. She thinks that "You've had the treatments, they're finished, you're cured, what's the problem." I share all these on-line stories with her from the ACOR website but it's almost like she's in denial. It's just less frustrating and easier on both of us if I keep my mouth shut. Oh well, this too will pass.

    I'm in the same boat. My husband can't seem to understand that some things are just too spicy or too dry. He thinks that if I just "try" real hard, then I can eat, which means that I'll be fine. My taste buds are returning, but it's been very strange. Reacts differently to different things at different times. I've been reading up on this. I've found out that taste is dependent on amount and quality of saliva. There are also different types of hot foods that I cannot tolerate. Definitely no red chili peppers or chili paste. Black and white peppers are fine. Certain mustards and curries are fine. There are lots of "hidden" spices that I cannot tolerate. I hope that she'll read this and understand. We want to eat everything; unfortunately, we can't.
    As for your first post about anxiety -- don't worry about what may be coming. Enjoy every bit of good health that you have left.
  • Goegs
    Goegs Member Posts: 6
    #6
    Emacornelia said:

    Hello , I have just finnished 25 treatments to my tonsil and lymph node. After seven weeks my togue is turning black , has anyone experienced this? Thanks

    I never had anything like that happen to me. I had plenty of burn/leisons from the radiation which made eating all but impossible.
  • Goegs
    Goegs Member Posts: 6
    #7
    Christmas said:

    I'm in the same boat. My husband can't seem to understand that some things are just too spicy or too dry. He thinks that if I just "try" real hard, then I can eat, which means that I'll be fine. My taste buds are returning, but it's been very strange. Reacts differently to different things at different times. I've been reading up on this. I've found out that taste is dependent on amount and quality of saliva. There are also different types of hot foods that I cannot tolerate. Definitely no red chili peppers or chili paste. Black and white peppers are fine. Certain mustards and curries are fine. There are lots of "hidden" spices that I cannot tolerate. I hope that she'll read this and understand. We want to eat everything; unfortunately, we can't.
    As for your first post about anxiety -- don't worry about what may be coming. Enjoy every bit of good health that you have left.

    No kidding, breads, rolls and crackers and I'm running for the water bottle. As far as spicy goes, well I live in Texas so Mexican and Cajun food was a big part of my life and back before cancer my motto was, the "Hotter the Better". I even grew my own habanaro, chili, jalapeno and ancho peppers to make my own special "4 Pepper Salsa. That was some spicy stuff!! This year I wound up giving all the peppers away at work....what a waste! My taste is slowly coming back I think. I've noticed a few things while eating this week that I have not tasted in the past (corn, wild rice, green beans and spaghetti sauce). I'm not jumping up and down yet but it's a move in the right direction.
  • snickie
    snickie Member Posts: 5
    #8
    Goegs said:

    No kidding, breads, rolls and crackers and I'm running for the water bottle. As far as spicy goes, well I live in Texas so Mexican and Cajun food was a big part of my life and back before cancer my motto was, the "Hotter the Better". I even grew my own habanaro, chili, jalapeno and ancho peppers to make my own special "4 Pepper Salsa. That was some spicy stuff!! This year I wound up giving all the peppers away at work....what a waste! My taste is slowly coming back I think. I've noticed a few things while eating this week that I have not tasted in the past (corn, wild rice, green beans and spaghetti sauce). I'm not jumping up and down yet but it's a move in the right direction.

    Hi Goegs, Hope by now somemore tastebuds have come back. I had my chemo and radiation last year and a radical neck dessection in Nov of 2005 to this day I still do not have all my tastebuds or saliva glands. The doc said that to the most I'll only get 80% back. Haven't reached that yet. I can't eat anything sweet (taste bad or very little taste),nothing acidic-no tomatoes,onions,spicey,most juices,no soda-can't handle the carbonation. And there are days where I feel i'll scream bloody murder if one more person says,"have you tried..." or " are you eating now". With the internet and librarys and not one friend or family member has even tried to educate themselves on my cancer or any other. I guess it's better to hide under a rock but see how fast they'll move when that rock falls on them. I think I've learned more about people than myself. I've lost 100 #s myself and look the same way-concentration camp victim. most people say how does it feel to be lighter? Like I was on a diet! I hope by now your wife has opened her eyes a bit. Funny,we are the ones with cancer but we end up being the teachers,information givers and reaching for the patience to deal with friends and family. There are those of us out there in the same boat. Hang tight and try to forgive them for their ignorances. You are in by prayers. God Bless.

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