Well, I guess we are past "boot camp" now. John's surgery went well{?]. {Home in 6 days-April 26th} working on his garage on the 27th , regardless of the hugh swelling of his face and neck. Did the feeding tube as directed for about 2 weeks and then started to experiment with what he could eat.During the next month, he did not rest or recuperate like he should have. On May 19 we went to have his rad mask fitted and scheduled the 1st IMRT Rad for May 25. John let it be known to all of us that he was perfectly capable of driving himself to these treatments [6 hr drive there and back]and furthermore, he would continue to eat what he wanted. [I had joined OCF the day after he was diagnosed and started reading everything I could and knew better]He has now finished tx #11 and the taste buds are gone, tounge and lips hurt alot,lots of "thick stuff" in his mouth[this is how he describes it].Toothpaste burns, Oral Balance felt awful to him.He is using my aloe plant for the burning sensation on the corners of his mouth. He has felt like this for over a week, yet still refuses to use his PEG. He[or I] cooks something and then discards it becaude he can't eat it.I know that most of you have been where we are now because I am reading as much and as fast as I can here. The info on this forum has educated and prepared me to help John and myself get thru this. But I wish so much that he would be more inclined to educate himself.So now he's at 167 lbs- takes rad 13 next Monday with 17 more to go. It occures to me that this is a "been there-done that" post, like I said, we are out of boot camp now.Amy

Hi Amy,

I'm glad you are out of boot camp. You are so correct about " been there done that" for most of us. The product biotene, which I purchase at Walgreens has both a toothpaste and mouth wash. It is expterely gentle and was designed for people who have problems from radiation in the oral cavity. Hopefully that will help with the inside of the mouth. The "thick stuff in his mouth does get much better after radiation.
I made alot of smoothies, carnation instant breakfasts, and was able to eat yogert and ice cream. I was told by my oncologist that Carnation Instant Breakfast had the same or almost the same ingredients as did Ensure etc. I found the instant breakfast tasted so much better. Also I had much less problems with constipation using Instant Breakfast. Fortunately I own a Vita-Mix Blender which is a commercial blender and makes smoothies using fruits and vegitables much easier and more nutritious(sp?) Hang in there it will get better and I'm glad you realize you are not alone in this new challange in life. Best of Luck
Hacklene

Amy, make sure John gets enough water. If he cannot swallow three or four glasses a day, use the PEG for that (and make sure it is not COLD water which hurts). Dehydration is a risk and a problem you do NOT want. Most people can use Biotene, but even that hurt my mouth. I was very glad to have a PEG. It will also help if he is rinsing with the salt-baking soda-water mouthwash. While this is an increasingly uncomfortable ordeal, it does have an end point, so keep marking the days off and soon it will be done.

Hi Amy,

So some of us are very stubborn and determined. I came out of the hospital 5 days after my first neck dissection, and proceeded to go back to work 8 days later. True, a desk job, but managed to pull all the muscles in my back out of whack because of weak shoulder and no arms on the chair so suffered for 9 months with PT trying to get put back together.

Radiation started 8 weeks later and I had arranged to have it at 8:30 in the morning because I planned to work for the entire period. I also drove myself. It was 5 minutes away. 8 days in my back pain was so bad I had to quit work, 9 days in I was running a 103 fever, could eat nothing and hit the bed for the weekend and most of the rest of the next 4 weeks. I just could not get warm.

Watch for thrush. I think that is what set me back so badly. I had a rampant case that took 6 months or more to clear. As to eating, as long as he is willing to and can eat he should. I never lost my taste of salt so everything I tried to eat or drink, including water, tasted like salt. If you make your own broth, he may be able to eat things like homemade cream soups. Eggs scrambled, poached, hollandaise, yogurt, carnation instant breakfast in milk, cream of wheat with honey, etc. Those smoothies should help. I found that water had to be ice cold, but then I did not have a PEG. It gets very frustrating. I wouldn't spend hours making his favorite x because both you and he will be very disapointed when he can't eat it. Nor is there any reason the family has to eat the smae thing he does.

Hopefully he will say 'uncle' on the drive sometime not too far in the future, but more power to him for being able to do it so far. Just make certain he is up to it. And yes, you are definitely out of boot camp with 'boots on the ground'. All the best to both of you.

Take care,
Eileen

From "Boots on the ground" to Eileen
While I admire your guts, I'm thinking about starting a "Worst Patient" contest, and you might want to enter.{Just kidding} I am listing everything being sent this way as to food ideas and soaking up the encouraging words. Thanks, Amy

I would like to submit my beloved for "worst patient" award. I am certain he is at least in the top ten!

Cindy

Cindy, he's in. If my John were to read this, he would say that in all fairness, we should also have a "most nagging caregiver" contest and he would submit my name in Bold letters. By the way, I think it was your suggestion I took about printing and casually leaving around posts that I hoped he might read. I've started doing that and he is reading them and that's how the 1st smoothie went down[after 2 days of almost no food]. Now that the rad tx is starting to take its' toll, I am printing info about thrush, sores in the mouth, etc. and leaving them "around" also. He finally asked the Rad nurse about pain meds. today. Where there's a will, there's a way. Amy

You will have to put me up there with the queen nagger here. There are times I have provoked such venom from him. I just have to remind myself that sometimes the right thing isn't always the popular one.

I guess in a way I sort of treat him like one of my children. Mostly because it is the only way to get him to do the right things.

And then there are the times when I have to just let go and whatever happens happens. As a caregiver, I swear that the letting go is the hardest part.

Life has some damn hard lessons to teach.

Cindy

Cindy, let's design a "queen nagger" crown for whoever wins it. Being from Houston, are you partial to cowboy hats? I'd probably lean toward something sparkley. Also, we should probably pick some judges from among this group. Anyone want to volunteer? Amy

Amy, here is another tip. I post this every so often because it is important. Smell his mouth. I am serious. I developed a terrible mouth odor, which I worked hard to cover up so as not to offend anyone, and what I was doing was masking a horrible infection. So if he has bad breath, let that be a warning sign.