In April 2013, my oral cancer presented as thrush in my mouth, then it was diagnosed as gingivitis, then oral lichen planus. After 7 trips to my dentist & different diagnoses each time, a biopsy was finally done. This was done in January 2016 and surgery was done in April 2016. I had a 2.5 cm tumor running along my lower left jaw and it had penetrated the bone by this time. Six teeth were removed and the affected bone was shaved off and my jaw supported by a metal strut. I had 6 rounds of chemo and 40 radiation. The cancer came back in 2019 (the doctor had left positive margins in 1st surgery). I traveled from TN to MD Anderson in Jacksonville FL and had fibula free flap reconstruction surgery. I had a 3 cm tumor in my left cheek, a .5 cm tumor under my tongue and 5 involved lymph nodes on the right side. So I was stage IV. Afterwards I had 30 rounds of radiation.

It’s now 2 1/2 years post-surgery and I’m still cancer free! I recently had surgery to untether my tongue on the bottom and I healed quickly. I have a speech impediment now and I must use a chop stick to push food between my molars (I have only 3 molars on the bottom) because my tongue doesn’t have the coordination to move the food. I lost half my tongue.

BTW I never smoked. I didn’t have HPV.

I’m wondering if anyone else is having this difficulty with eating? Do you have any tips to help me? I refuse to eat in public.

Dear Grammy Life,

It is hard. I lost half my tongue and it was rebuilt with flesh from my arm and had 60Gy of rads. It took many months of slowing manipulating different foods but I can do it now. I am about 2-1/2 years out now (surgery was 4-1-2020). It takes me a long time to eat and I can not socialize very well during a meal (food comes out!) unless i am careful.

I have learned to raise a finger and those with me understand to let me finish processing whatever is in my mouth. Then, i cover my mouth with a napkin and speak. Until i went through this, I never realized how much of our social lives is based around meals.

My first few trips to the restaurants were careful and lots of napkins! But, i can manipulate most anything now. In fact, i am at work now, at my desk, eating a chicken casserole! No way i could have done that for months but i can today. I do have to occasionally stick a finger in my mouth and really gyrate my chin around weirdly to get food from stuck areas. But, behind a napkin usually no big deal. I have done business meals, etc. This is no longer a thing for me like it was the first months.

If you want to try, you can likely figure out a way to do this. Start simple, soups, soft foods, etc. Bring extra napkins, floss, toothpics, etc. I sometimes go to the bathroom with floss or toothpics in my pocket and work out whatever is stuck. Also, if with new people, i find that if i explain myself, they are quite understanding. For all the ones who aren't, their loss!

Stay safe and keep the faith,
Nels