Not liking food or wanting to eat

slk2015

I realized a long time back I am at an advantage when it came to difficulty in eating after the glossectomies--I have been a type 1 diabetic for nearly 45 years and I have little or no choice in eating.  Once one takes insulin, there's no other choice.  Since March of 2015, I've had 2 glossectomies, my top teeth pulled and now my bottom teeth.  I'm back at the "only very soft or pureed" stage since the gums haven't healed far enough to chew on.  Last night, I was nearly in tear, trying to find anything I could eat after taking insulin.  A mashed baked potato finally worked.  Sometimes it takes 2 or 3 tries to find something.

When it comes to eating, my diabetes has me well trained.  It has to be very difficult for people who have always been able to eat whatever and whenever they wanted.  I remember my dad eating ice cream and malts when he was treated for lung cancer.  He was reported very grumpy about this and lost a lot of weight.  It had to be a tough change for him, especially since he was a meat and potatoes guy.  All of you who are going through this have my utmost respect most definately.

stevenpepe

I'm sorry you're going

I'm sorry you're going through this. I am praying my partial glossectomy is it for me. I had the radiation because of lymph node mets. You are fortunate to have avoided it. Radiation completely transforms your taste buds, causes loss of saliva, mucositis, and pain. It makes difficulty eating even more difficult.

Kari2007

Huge adjustment

The not being able to eat what I want or to enjoy food has been a major hurdle for me. Thanks for acknowledging how hard it is to go through this aspect of it. I'm just starting week 3, but very little tastes good. At best, it tastes not bad. Smoothies taste pretty normal, and I ate split pea soup with ham and that was actually almost normal tasting and certainly satisfying. I also had some tapioca pudding which didn't taste nearly as sweet as it would with functioning taste buds, but the texture was nice on my mouth and throat. I actually ate two small pieces of cheese pizza last night! Unfortunately, little bits got stuck in my throat for a while, so I'm being extra careful with the "dry" foods now.

So, you're right. It's all about experimenting with what works. I've been supplementing with the feeding tube and hopefully haven't lost any weight this week. 

Drivingdaisy

So true slk.  Having been

So true slk.  Having been able to eat and drink ( love good wines) than have that rug pulled out under your feet really is depressing not to mention frustrating.  Only those going through this really understand the difficulty especially when your hungrey or thirsty.  Between the radiation topped with chemo, mouth and throat damage can be quite debilitating.  I have been healing very well (3 months out of treatment) but unfortunately have developed "Burning Mouth/Tongue Syndrome".   I can taste, chew, swallow but, when the food touches the back of my tongue most foods, drinks feel like pouring alcohol on a open wound.  Really puts any thought of continuing eating right out the window.  I am way down in weight now.  Many reasons what can cause this but after reading and talking with Drs/Dentists it is probably due to all the physical/chemical changes, thank you chemo and rads that have occurred in my body.  So now on the tiring mission trying to find out WHAT I am depleted in and how to rebalance my chemistry so I can eat.  A slow, very painful process.  Add this to my radiated throat, wish I could scream.  I did not have surgery but I wonder if that would have been better than chemo.  It really messed me up much more than the radiation.  One Day , One Meal, at a Time !

slk2015

stevenpepe said:

I'm sorry you're going

I'm sorry you're going through this. I am praying my partial glossectomy is it for me. I had the radiation because of lymph node mets. You are fortunate to have avoided it. Radiation completely transforms your taste buds, causes loss of saliva, mucositis, and pain. It makes difficulty eating even more difficult.

Treatment

Thank you.  I feel very fortunate to not have had to have radiation.  I already have a dry mouth and have difficulty keeping my top dentures in (can't form suction) but I am constantly wondering how my brother managed with radiation and virtually no saliva.  I know he carried a water bottle virtually everywhere.  It's so easy to panic when you feel you can't swallow.  I am amazed how people do this.