Hello All!
I was diagnosed with tonsil cancer (HPV) last year 2018. I had a tonsillectomy and neck dissection in March 2018 and radiation/chemo starting in April and ending mid-June 2018. It is now about 10 months after the last treatment, and despite the residual side effects, I am hopeful and optimistic that I will have a relatively normal lifespan.

The hardest parts of the treatment were of course, the horrible mouth sores. I had to get a stomach tube because the mouth sores were so bad that even water felt like knives slicing my mouth apart. For me it was not an option. I was hospitalized with malnutrition and dehydration because I couldn't put enough in my mouth due to the pain. But now, the tube is out, the worst of the mouth sores are almost completely gone (there's still a bit of scarring), and I can eat. Not like I used to by any means, but I don't expect to. I have the dry mouth and funky taste thing that everyone has. I think the oddest thing is that I can't taste white sugar but I can taste certain fruit sugars like dates and dark cherries. Citrus fruits taste odd but not horrible. Maple syrup tastes normal, but honey does not. Honey tastes a little bitter. Also, because of the dry mouth, I find it difficult to eat bread, meat, or anything very fibrous or thick. I have become quite the smoothie addict!

Fruits and vegetables are the easiest things for me to eat because they have so much water in them. Meat is difficult and protein in general is the biggest challenge. My go-to protein sources are currently protein powders in my smoothies, tofu, eggs, nuts (in smoothies or softened a bit in oatmeal), dairy, and beans/lentils. I do eat meat, but because it is so difficult, I eat very little and not that often. Even ground meats are more trouble than they are worth most of the time.

I don't complain though. Frankly, I needed to loose a bit of weight (not THIS much, but whatever! LOL). I told my ENT, even if I never get any improvement from where I am now, I'm fine with this. If you think about it, my "new mouth" as I call it, is forcing me into most of the healthy habits they recommend: eat slowly; drink lots of water throughout the day; drink lots of water during meals; chew thoroughly; eat lots of fruits and vegetables; eat very little sugar. Check, check, check, and check! So, like I said to my ENT, if my worst long term side effect is that I am forced into healthy eating habits, then I can't really complain, right?

It's funny how much emphasis we put on food. The kitchen is the "heart" of our house, many of us say. When we meet our friends or get together with family, we plan around eating a meal together. We consider food to be one of the most important parts of our cultures. And now food is a chore to me. So, I have had to adjust my relationship with food but that's fine. Food is not what it used to be, but that is okay. Food is fuel for my body. It is not my relationships and it is not my happiness. I am alive and cancer-free. If I have to order soup at the restaurant and eat it even if it tastes weird, well, who cares? At least I'm still here! My kids still have their mom and that is the most important thing!

I have also started exercising (as of last November). Exercise and I were never previously very close. I would occasionally try to strike up an acquaintance, but the relationship just seemed to require too much effort! I actually called it, "The E word." Now, I do some kind of exercise almost every day, even if it is just a few squats or some dumbbell curls. I usually do more, of course, but even on my bad days, that little bit is better than nothing, which is what I used to do. Plus, if I do skip a day altogether, I don't feel terrible about it because I know I will exercise the next day. And I do. I am just determined not to give cancer a chance again. Living the unhealthy life that I used to live is like putting out a welcome mat for cancer, and this body is now a gated community! Ha ha!

I still have struggles like everyone else (I didn't realize how long the healing process takes), but I try really hard to stay positive and focus on what I CAN do and seeing things from the brighter side and not just the dark side. Life is already challenging enough without me adding to it with a negative outlook. It's all perspective, right?