Hi All, some of you have been asking how long before things get better. Well I am 5and 1/2 years post treatment and while things have settled there is some that will be life long. Taste is still all over the place and really depends on degree of mucosis and also degree of oral thrush. Did they tell you this can become a problem because of the lack of saliva. I have to take a prophalatlic antibiotic to keep the thrush under control. As mine was on the tongue with almost one side being removed and replaced with a flap from my forearm, my taste will never be the same. Big chunk of taste buds now missing. Also that part of my new tongue gets cold which is a really strange sensation. I have what is called a woody neck as a result of radiotherapy scaring and that side of my face and neck have a different skin texture. Also because of the nerve damage where they did the neck disection, my ear is extremely sensative particularly when it is cold. I still struggle to eat some does and often skip lunch because it is all too hard. Soups are my main go to and evrything else is smothered in gravy or white sauce. Chewing can be a problem as it makes my nose run and eyes leak. Apparently this is normal. There are a few side effects that some experience that others don't and it really depends on where the cancer was, what surgery was done and the follow up treatment. Some days are harder to get through even this far out but it is one step at a time, one day at a time. Everyone will find their own way to deal with lasting issues and with support from family, friends and this forum you will make it. As to the weight issue, I lost sixty kilos all up and have kept most of it off. I was morbidly obese before the cancer so this was my silver lining. Weight loss was due to tube feeding after op didn't agree with me so didn't get much that first week. then only eating very soft foods and soup for a couple of months. During treatment I was unable to take anything by mouth for about three weeks and just as they talked about putting a peg in, I was finally able to get some shakes and ensure down. This is a lifelong journey and being a Thursday's child I have far to go. Best wishes to all
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