Eating

I didn't want to eat due to pain from radiation, then when the pain subsided a bit, I wanted to eat but had no taste. I would eat/drink and get no satisfaction so I began losing more weight because I would only consume the absolute minimum in Boost drinks but when my taste started coming back I ate like a machine and went above my pretreatment weight. I think it is different for everyone and even though you feel off, it's a version of normal! Hope you continue your path to your new normal!

Hey Robby and SuzJ,

I'm in Week 4 of RT (total of 7 weeks, 1/day) and 2nd chemo coming up. Diagnosed with squamous cell carcinoma in left lymph node below the jawline. So far, the node has shrunk to <20% of what it was before treatment. Was the size of a small chicken egg (yeah that's HUGE). So I'm very upbeat about it, especially since my RT Dr. said he expected this. That's how I'm encouraged, when I hear that my therapy is going according to plan.

Anywho, about taste and losing weight. My nurse navigator, Becky, continually stresses to me to EAT, EAT, EAT. If you're drinking only 1-2 Boosts a day in addition to three meals, consider eating smaller meals more often, and drinking 2, 3 or even 4 Boosts/day (I'm drinking Ensure Plus, 3 to 4 times a day). I had a cholectectomy back in 2017 (gallbladder removal), and my dietician recommended I switch to smaller meals, eating more often. So I was already doing what Becky recommended.

To me, there are a couple of benefits to smaller meals, more often. First, you're eating less at a time, and therefore kinda tricking your "taster" into the fact that it doesn't have to endure the lack of taste sensation. To me, that's the biggest effect. You're not forcing yourself to eat a big meal all the while, not enjoying it more and more as you eat more and more at one sitting. I think your mind builds up a resistance to eating something that has no taste (or doesn't taste as it should) the more you eat and experience that disassociation between eating and expecting the feedback of that fettuccini Alfredo that doesn't....quite....taste....how it should. Follow me so far?

So smaller meals, more often, leads to less resistance to eating food, in general. Well, at least that's how I'M interpreting it, FOR ME. Second, eating smaller meals puts less stress on your digestive tract and leaves the rest of your body to have more energy going to it, i.e. your immune system has more fuel to fight infections.

Keep all of what I'm saying in mind vs. what your Dr. tells you. You are different that me, and everything I'm saying should not in any way be considered medical advice. I was also told to be wary of spikes in my body temperature. So, I continually monitor my body temp, taking my it several times a day. I was also told that if it gets above ~100 F for more than an hour to go to the ER immediately.

Oh, and a third benefit to eating smaller meals. You're exercising your swallow muscles more often but in smaller "reps". So to me, I'm keeping my swallow muscles "in shape" and keeping the swallow reflex "alive", so to speak. When I was 20, and in the hospital for four months when I was in the Navy, I had to basically learn how to walk all over again. The reason why was because I was completely bed ridden and literally could not walk because of my injuries I sustained. Eventually, I had to have surgery and the bedridden condition continued. My right calf muscles atrophied so much, I could slap it lightly and it kinda waved at me in the air. Plus having a crushed right hip didn't help any. It was WORK when going to rehab. So I'm exercising my swallow muscles, even though it hurts (a LOT sometimes), according to what my speech therapists at the VA hospital are telling me.

Finally, I've been doing some research into the benefits of aloe vera gargle solution. I can't post the link for my research from the NIH site, but all I did was do a browser search with the key words - radiation therapy aloe vera gargle. I also consulted my RT therapy Dr. about it and he recommended PASTUERIZED aloe vera solution. I haven't started using aloe vera as a gargle solution yet, so anyone out there that HAS used it, please chime in here. The more the better, in my opinion.

Keep up the fight, guys! If I can do it, so can you! We got this.😀

I kept telling myself that food is neither my friend nor my enemy. It is a tool that I need in order to provide fuel to my body. It is so hard to let that sink in though. Most people (at least in US culture) are obsessed with food and the rituals surrounding it. We call the kitchen "the heart of the home." When we hang out with friends, we go out to get drinks and/or food. We celebrate special occasions with special dinners or fancy deserts. Before food tasted disgusting to me and then became impossible to eat because of pain, I never realized how much psychology is behind just eating.

Continually reminding myself though that food is just fuel for my body, helped me to divorce my brain from the feeling that my mouth was betraying me or that food itself was betraying me. I couldn't eat with my family, I couldn't taste, and then I couldn't eat at all. Being able to look at that situation from a very logical viewpoint and get away from the emotional aspect of it, really helped me.

I highly recommend getting a really good blender if you can afford it. It is so much more pleasant to just drink your nutrients rather than having to chew and swallow them. All the water needed to swallow food can take up too much space in your stomach and make you full before you've eaten enough calories. Smoothies using peanut butter, bananas, nuts, chia seeds, pumpkin seeds, and all the other healthy and high-calorie ingredients, were what made it possible for me to get off the stomach tube once my mouth healed enough to consume anything again. A lot of people use Ensure and that sort of thing but I wanted to try to focus on high nutrition as much as high calories. If you don't have a nutritionist though or if you aren't really into researching food, then you could always use Ensure as a liquid in your smoothies, just to be on the safe side.

I too watched food shows when food was something I couldn't enjoy. I heard about that type of thing on Hidden Brain from NPR. When we are experiencing scarcity, we become obsessed by the thing we lack. So that explained why, when I couldn't even put water in my mouth without pain, I was torturing myself by binge watching Netflix's entire catalog of The Great British Bake Off. And also why now, a few years later and I can eat fine, I haven't watched a single food show since that time. I was never into food shows before that and my interest in them lasted only as long as my inability to taste or eat.

Don't lose heart! It is temporary and it is a side effect of treatments that are making you better and getting you cancer-free!! It's all part of the process. Just roll with the punches and learn to be okay with the bruises it takes to come out fighting and end up a winner of this battle!

All the best! :)