• frustration with side effects

    Asked by Flyboy on Monday, October 29, 2012

    frustration with side effects

    My husband is 17 weeks from last treatment for hypopharyngeal cancer. He has made remarkable recovery in most every way, except getting saliva back to help him eat. He has had the PEG tube removed and drinks many BoostPlus and shakes, eats eggs...anything soft and with sauces or gravies. Drs say he is on track, saliva and taste are slow to return and he has had 2 accupuncture treatments with little result yet. He is getting more and more frustrated with his inability to eat more regular foods, like a 5 guys hamburger or mexican food! He is getting depressed and says he thinks about just giving up, always drinking or eating some small meal to get the needed 2800 calories so he can gain weight is tiresome. I try to make different foods that I think will work, but if they don't then he just gets upset. He will be returning to work next week part time so maybe that will help some since he has been home so much alone. I would think these feelings are normal. Any ideas

    6 Answers from the Community

    6 answers
    • SueRae1's Avatar

      Frustration and anger with the side effects of chemo are normal. The physical and psychological journey the patient and his/her caregivers are on is not one we volunteered for. Our lives have been turned up side down, the image of who we are is changing, the physical limitations - weather minor (i.e. taste changes, dry skin) or Major (lack of energy, tanking blood counts, etc) become burdens - I resent not being able to eat grapefruit, I love grapefruit. He may want to find a therapist who specializes in treating cancer patients, I am seeing one, and find that the practical advice I am getting to mange my day to day life, energy and emotions really helpful. Sometimes we need help unraveling the the different and possible related issues that seem to have taken over our lives.

      almost 5 years ago
    • GGP's Avatar

      I had a malignant tonsil. 4 years ago, had the tonsil taken out, then one month later had the radical neck disection. This followed by radiation treatment to the neck, upper chest, jaw area. Now, I also had radiation 24 years ago for hodgkins disease that I had twice back then. I have trouble swallowing, I had extreme trouble in the early days and months after the surgery and radiation. It is slooooowwwwwlly getting better. Still have extreme dry mouth. Still have trouble swallowing, it will never be normal like it was. I have choked twice since the surgery, choking as in thought I was going to fall out, needed help to get it out.

      I choose my food now on what I call the "slide" factor. I'm sure your husband will understand that!
      Best of luck to you both, tell him to hang in there, it does get better but takes a while.

      almost 5 years ago
    • Kathy's Avatar

      I'm dealing with frustrating side effects and am feeling discouraged. I feel bad for us both.

      almost 5 years ago
    • packerbacker's Avatar

      I have dry mouth since getting radiation last year for a tumor on my tongue. I have to drink a lot of liquid, as I'm sure your husband is familiar with. I eat a lot a casseroles, as the noodles go down easy, but I also eat burgers. I have no lower teeth and my dentures don't fit since radiation, so I do a lot of "gumming." I understand how he feels. I try to look at it as I'm eating because my body needs it so I'm strong enough to take the treatments I get. I do know I feel much worse when I don't eat enough, which is too often. Best of luck to you both!

      almost 5 years ago
    • IKickedIt's Avatar

      Yes, frustration is very much part of the experience. Unfortunately, I'm still encountering frustration more than a year later and wonder if I'll ever be satisfied with the new me and my limitations.

      I can completely understand his frustration with the food since I had problems eating while I was on chemo, too. I lost a lot of weight because I couldn't eat (I saw it as a little perk), but then gained it all back...and more...when I was able to eat again.

      However, a thought came to mind...yes, of course he is frustrated not being able to physically eat the foods he enjoys (let's face it, the tactile sensations are often just as satisfying as the the taste), but have your tried using the blender? A friend had his mouth wired shut when he had his jaw broken and joked about how good a Big Mac was in the blender once he got past the look of it. Just a thought. Perhaps with a bit of humor and drama, you could make it into quite an interesting experiment.

      almost 5 years ago
    • Flyboy's Avatar

      I know he's entitled to a bad day, he's been thru alot. I try to understand but can't possibly now how he feels. Maybe this is another step in the process of recovering. The realization that it only took 10 days to start feeling crappy after treatment started, but it's going to take a lot longer to feel normal. Whatever his normal will be...I mentioned the food in the blender, the dietician talked about that too. He didn't seem too excited about that, tho I can't blame him. The idea to me also seems so awful. But never say never. I can relate to the "slide" factor, tho, always have gravy or sauces available for most everything. I never cooked that way before so I am learning too. thanks for your input. It helps talking with you all who are working thru the same issues. Take care.

      almost 5 years ago

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