Question About After Treatment

tbret said:

Eating, Drinking, and being Wordy
One of the problems those of us who have survived (so far: 18 months after treatments ended for me) is that my radiation and chemo wasn't your wife's chemo and radiation. The shape of my "let's see if we can cure you or kill you" beam was not the shape of hers and I bet our radiation masks wouldn't fit one another. ...you "get it." Her experience will be different than mine.

I apologize if you've read me before so you already know this: I lived on Ensure for months. One of the reasons is that the Cisplatin so messed with my sense of taste that I needed to get calories in that I didn't have to taste. I could hold my nose and drink 16 ounces of room temperature Ensure in a matter of seconds.

I'm reporting this so you can judge the degree things are different for your wife. There were only a very few days when I couldn't contemplate swallowing things and they weren't always "in a row." When I started eating again I was eating Cream of Wheat, mostly. Oatmeal is not the same consistency and I could not eat it. Then I discovered that if I had a little Cream of Wheat in my mouth I could chew and swallow just about anything. (I could taste nothing, so that might have been a mercy since I would eat steak (medium to medium rare only) using Cream of Wheat (thinned a little) as a saliva substitute. For me, early-on, water made a lousy saliva substitute. I could eat a baked potato, but NOT mashed potatoes. (they formed a "plug") In fact, what I could eat was counter-intuitive and still is today.

It was about a month after treatments ended, maybe closer to six weeks, that I could eat a little pork loin. It didn't taste like anything and that was GREAT. If she can eat, then she's doing REALLY well. So I'm not trying to say "don't expect her to eat" but I am saying "don't freak-out if this takes a little while."

What I would suggest is that when you try food of any sort, try lots of different things. Pureed would have plugged my throat. The "graininess" of the Cream of Wheat made it work (but weirdly, steak was easier than hamburger for me) for me, but maybe not her. The steel cut was too grainy. I'm not saying it would be for her, I'm saying subtle differences aren't so subtle when you are struggling. They can make all the difference.

My low point was somewhere between two and three weeks after the treatments stopped. If I had eaten more and sooner I think I would have improved faster. I stubbornly stuck to Ensure because it was "easy" and that was probably a mistake (I will never know for sure). Biotene has been wonderful for me. I have multiple bottles scattered in cars and in the house and I keep a zip-lock bag full of oral care products in every vehicle so I am never caught without.

Like everyone else who got better, what I want you to know, understand, and live is that this stuff is awful but IT DOES GET BETTER. I can go into any restaurant, anywhere, and find something to eat. I can and do eat just about everything.

OHHHHHH!!! Paradoxically, I really find chocolate to be offensive tasting now. It smells wonderful and tastes awful. HOWEVER, when I was searching for calories I found I could drink a Baskin-Robbins chocolate chip (a little bitter) milkshake. A medium has something like 1,000 calories in it. I tried other flavors and the only ice cream I sort-of liked for a while was the pralines and cream (because of the saltiness of the nuts in it). That got really expensive, so my wife started making my milkshakes at home. Now I'm fat again. Hooray for me. ...'er somethin'.

The point in telling you that is just to say that sometimes there doesn't seem to be a rhyme or reason to things. Try everything. Try it now and try it again later because the experience changes.

I had the skin burns. My neck looked like the sun cracked clear-coat on a badly painted trunk-lid. Mine passed in a week or maybe it was two weeks. I did nothing for it, at all. The doctors told me not-to unless... something I don't remember... and they would give me something for it, which it never did so they never did.

By the way - I had trouble taking my last two radiations. Stuff (that's the only way I can describe it) was constantly in my mouth and down my neck and being immobilized on my back and being unable to deal with it was rough. The last two treatments we had to interrupt so I could clear my airway and we could continue.

So, to try to be encouraging, I think all I can say is "Be encouraged!!!" I worked in the yard most of yesterday afternoon. I HATE yard work, but I love the fact that I can. For me the thing that was most crippling was the fatigue. I've never felt like that before or since. I can't believe a person can be that fatigued and be willing to breathe. Oh my goodness was that ever awful. It made my support network a little miffed because they just couldn't understand how it was that I could be so tired that I couldn't eat, or couldn't do something else they wanted me to do.

Ok, enough from me for a while.

Hang in there and your wife may be doing yard work she doesn't want to do this time next year!

I started a new thread just asking about eating solid food, but I hadn't seen this yet. Your words are very encouraging, thank you. She's three weeks out and says her throat is much too "small" to try solid food. Anything thicker than almond milk makes her choke and cough. So, we've been adding water to pre-packaged meal replacements. She never gets in more than about 900 calories per day. But, she watches the Food Network nonstop, seriously. She is obsessed with food shows and with the idea of eating. She feels like she's a month away from solid food...I worry it may be more.

Thanks again. This site has been a lifesaver for us.