Esophageal cancer....transitioning to food

Hello @adriennef! Welcome to Mayo Clinic connect. Thank you for joining the conversation on transitioning to food after esophageal cancer. I feel as if this topic really pertains to any post operative cancer patient or any post chemotherapy patient. This is a great topic and will be really helpful to future readers that are here looking for answers from someone who has actually "been there". Since you have experienced Chemo and several surgeries in your mouth, I'm sure you have a lot of knowledge on this topic. Sorry to hear you have had to battle so many times, I bet that's been tough.

You mentioned that losing such a "normal" behavior can be pretty demoralizing- I'm wondering if you would be willing to talk more about it and how you got through it. What helped you the most to eat socially again? What tips or tricks do you have for others that worked for you? There are so many things that can help in this situation and so many of you that have experienced it, future members will greatly benefit from reading your history, if you're comfortable sharing. Plus, I'm really hoping you will share your mom's recipe for peanut butter pie!! 🙂 Maybe we could start a log of recipes that people enjoyed while transitioning to soft foods?

I know my friend, @nursemaven, had some successful recipes and some tips and tricks that worked while transitioning to soft foods. Please share them here if you feel comfortable doing so. I'm going to bring in the whole gang, in hopes that everyone will do a little sharing of tips! @trudivo, @nanny23, @izzy, @geezer, @patricia1215, @lisa_sj99, @maryhelen and @angelag

Thanks, @jamienolson ! I'm really happy to be here to learn from other survivor's journeys. You are right- it is a helpful topic for so any people. I didn't have esophageal cancer, but survived six bouts with oral cancer.

Because of my surgeries I have a very limited mouth opening, have lost quite a bit of my tongue function, and have only half of my bottom teeth. Radiation has stolen most of my saliva. The combination makes eating extremely tricky (and pretty unattractive!). I quite often get food "stuck" in my throat and have difficulty swallowing. It is nearly impossible to carry on a conversation while eating.

To be honest, I shed a lot of tears over the loss of being able to eat around others. I frequently would eat a meal before meeting friends because I knew it would be too tough to eat in public. It was a loss that I never anticipated, and my doctors never discussed with me, but it was pretty painful. You don't realize how much community is shared and relationships are built around food until you lose it.

I don't know that I have any tips of getting through it. I didn't know if it would ever change or get better for me. But, at the same time, I was happy to sacrifice being able to eat with my friends and family to be alive! All I can say is that it is difficult and another reminder that life isn't how it used to be.

It has just been in the past few months that I have really tried to push myself to tackle foods that aren't soft. Bread and meat are both still really tricky for me, as are crunchy foods, but I'm trying! I've found that if I can add some sauce or dressing, that typically helps. I relied on my feeding tube for 2.5 years for most of my calories. I am thrilled to have it removed on Tuesday!

I'll see if I can rustle up the peanut butter pie recipe, although I'm afraid if I see it, I might have to make it 😉

I've learned a lot after six bouts of cancer over ten years. I feel like I've seen it all: seven surgeries, four chemotherapy agents, IMRT twice, proton beam radiation once, and an immunotherapy clinical trial. I will try to write up a summary over on the "head and neck cancer" thread. Hopefully my experience might help others in their fight.

How would I be able to read all your information you have collected regarding esophageal cancer? My husband had the surgery, now we are wishing he never did. It has been down hill ever since! Now he has the cancer recurring and it hasn't been that long plus it is in his lymphs now and surgical area.