years beyond treatment

mahootna
Contributor

years beyond treatment

HI All

It is some t ime since I visited this site as I am now nine years post treatment.  It is interesting to read some of the newer post that are coming through.  I had concer on my tongue which resulted in a partial glosectomey follwed by 32 radiation treatments.   That was hell but I got through it with family help.  To this day I still have trouble eating most foods and have what is called a semi soft diet.  My saliva glands never recovered properly so what saliva I do have is thick and dries up the minute I put any food in m y mouth.  No sandwiches for me.  I was describing this to a friend the other day and it is like you trying to eat to many dry crackers without liquid to wash them down.  Most of my meal have gravy or similar on them.  I eat soup for lunch almost every day as it is the easist.  The repair for my tongue was taken from my left forearm and has only just gotten some feeling to it.  My forearm and hand cause problems because of the nerve damage.  My neck is called a woody neck because  of the scaring from the radiation.  I have the most trouble with my jaw after a visit to the dentist as it goes out of alignment and I have to stretch it back again.  There are some things that will never return, like the missing taste buds and saliva.  Also remember that radioatin on your head and neck affect other glands it can create problems later.   Get yourself a really good family doctor who is willing to research and does regular blood test.  It has been a long road and some things really suck but life goes on and we  make the best of what we get.  I just play the hand I have been dealt and am thankful that I am here to spend precious time with my granddaughter.

Stay strong and safe everyone

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Hannah1
New Contributor

Re: years beyond treatment

Hi mahootna, your diagnosis must have been so frightening and your treatment also.  The side effects you describe are wretched but it appears you're dealing with them very well.  I just wanted to acknowledge your post and congratulate you for being a survivor!  9 years is a long time.  I wish you well.

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laura19
New Contributor

Re: years beyond treatment

Thanks Allen for your post. I have had part of my tongue replaced, also my jaw ,last year. I am finding eating difficult and would like to think I will one day eat more than pureed food.  How do you cope in social situations, eg when dining out with friends? Thank you very much

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