Hi Msweet,

I have taken sometime to reflect on my response. Getting oral cancer sucks. Just when one thinks one is out of the woods with an NED, then the long terms side effects kicks in. I understand perfectly how you’re feeling. My husband, John felt he had been robbed of all quality of life when he realized that his esophagus was blocked. He actively searched for treatments for his swallowing even though his cancer had already metastasized. He even contemplated going to the US for treatment (we’re from Canada) although taking that step would mean we would have to mortgage the house and go into debt. He would sneak sips of pop when I was not watching and absolutely refused to eat puréed food. The problem was he kept aspirating and was once hospitalized for three weeks, which, in Canada where we have socialized medicine, was a big, big deal.

As his caregiver, I knew how frustrated he was and yet, caring for him when he would not heed the SLP’s advise was frustrating for me. I was scared all the time.

At this point, you might have to weigh between health and having a feeding tube. Neither is an easy choice. If you choose a feeding tube, it would mean missing out on eating good, properly cooked food. Some people I know chew the food in their mouths and spit it out after. Would that be an acceptable course of action for you? If you choose to forego a feeding tube, you have to be very, very careful about what you put in your mouth. Aspiration pneumonia is exceedingly dangerous and if you get successive bouts, you will be weakened.

Is there someone you can talk to about your choice, a pastor or a counselor, for example? What about members of your family?

Most people do not really understand the struggles people with swallowing difficulties go through. It’s beyond most people’s imagination. If you’ve been through a barium test, you would know there only a flimsy piece of skin (the epiglottis) that guards our windpipe from the food that goes into the esophagus. John used to say maybe that’s a design flaw in the human body. Whatever that might be, I fully understand how discouraged you may be feeling.