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Thank you for listening, I have not seen oncology for 16 years. I have had every possible swallowing test available, several different times at different hospitals or clinics. I do have silent aspiration. I also had a menography ? Large, long tube done throat with sensors on it to assess is they can push water I drank down. No activity, paralyzed throat. If food gets in there I can’t push it down. I know different ways to turn my head to help but still involves a lot of choking , throwing up. .. I am able to “huff” what I call it and blow price of food out.
My husband and I went back last year to see if I could possibly get feeding tube. This time the excuse was I was “to thin “ I would have to gain 15 or 20 pounds before they would attempt it. Again Doc-my husband- and I and my PCP agreed that university of Iowa doesn’t really care. Basically again go off and die. Went to ENT2 years ago, he said nothing could be done to help mouth ulcers. Radiation had destroyed all my mucus membranes, also mentioned radiation changes DNA in areas, nothing can be done except for lidocaine. Tried to get into a neurologist to have him check brain scan, lots of memory and dizziness, again was told this could have been affected by radiation so close to brain tissue. He didn’t want to see me told me to go back to ENT. I am just really just giving up. My husband and I ran his podiatry practice, two different offices, for 26 years. We never once turned anyone away for any reason. He at one point was taking care of 9 different nursing homes, in a rural area with some hour away because no other Dr wanted to help them.We treated elderly patients in their home when long term patients and couldn’t get out. I am just whining now but to have did everything possible in our lives for others and then me not being able to get help is despicable. I have no shame in my heart, we did not treat our patients like this. I am just grateful there are people like you out there who understand. And to all the frightened patients who have been given a time limit. I was told surgeons could not get all of cancer tissue. They gave me 1 year time limit. Don’t live your life waiting for something that was told to you would happen. Just live you life happy!
Thank you for listening to me. Julie Hart

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Replies to "Thank you for listening, I have not seen oncology for 16 years. I have had every..."

Dear Julie, You really are an inspiration. You have lived a life of service and giving and I am so sorry that you have this long term suffering to deal with. I know the value of a podiatrist who will travel to help his patients while caring for my aunt and uncle in their 90s with dementia. I would love to give you a virtual hug for all the good you and your husband have done for our elderly population.
I have one more suggestion for healing your oral ulcers, after years of using Manuka honey for healing wounds on my canine and feline patients. Research it and see if you want to try it as a mouthwash or just holding it in your mouth before swallowing. It stimulates healing and protects against infection and perhaps it might help you. I use it daily as a sweetener in coffee for its healing potential. I buy the weakest Bees and Trees brand on Amazon. It is thick so you might need to mix it with warm water, but the taste is great. I hope you can keep your positive attitude, perhaps gain some weight and find someone to place a stomach tube for you. Be strong and thank you for sharing your story.