Hi Barbara,

My husband is at day 10 of radiation, so far he holds his weight, but he is losing taste quickly. I give him a shake every morning made up of various stuff our nutritionist recommended. Now I am adding Skandishake and Benecalorie liquid (it has a neutral taste) for extra calories. I added the shake calories up today and it came to 600+. If he can get 2-3 down a day, and whatever else he can tolerate as treatment goes on I will be happy. I ordered a lot of things on-line, but it does take a few days to arrive.

Best Wishes,

Michael ate relatively well yesterday - he had two kinds of home made soups, some beans, banana pudding and three Boosts (I finally got him to do more than two). I have ordered a couple other supplements I found here and one I found in a head and neck cancer cookbook. I plan to order some samples of Skandishake. But tell me more about Benecalorie with the neutral taste - I know the neutral taste part sounds appealing to Michael right now. How many calories does it have per serving?

I think Michael currently is thinking a feeding tube might be easier. The biggest negative thing he discovered from his nurse yesterday, which I had already thought of but not mentioned to him, is that he is a bath taker not a shower taker and he probably will have to take showers not baths with the tube. I get pretty depressed for him thinking of all the things he has had to give up with this experience. Stopped smoking, almost stopped coffee (he still drinks a few sips a day - he used to drink about three pots), spices (he was a really good chef himself and cooked with a lot of herbs, spices and hot sauces - at one time he actually had 30 different kinds of hot sauces in our refrigerator), going out to eat, pretty much going anywhere except for doctors appointments, driving, and now maybe baths.

I will find some more of his favorite Boost today. He was adding some extra milk to it, but he doesn

Both Barbaras,

You need to try Carnation Instant Breakfast VHC. It has 560 calories in a nutritionally balanced formula. You must order it through your pharmacy like CVS or Walgrens, etc. but it costs no more than Ensure or Boost Plus. It really saves time and swallowing and is real convenient.

I used it and still do.

David,

Good news / bad news today re: Michael. Bad news is that he is second guessing the rationale for the treatment twice per day the last two weeks of radiation. He wants to do a major interrogation of the doctor tomorrow about that. The thing I have heard is that there is a higher "cure rate" with the tx twice per day at the end. He is just feeling really tired and miserable already and doesn't want it to get worse. I just hope he will agree to go along with it. He does like the doctor so hopefully he will help convince him.


The good news is he has been eating more yesterday and today and I think, if our scale is right, he has actually gained a couple pounds.
We tried Carnation instant Breakfast and he thought that was too sweet. I assume the VHC is somewhat different? He also really doesn't like milk now. I thought about trying soy milk since that is what is in Boost I guess and that seems to be the most tolerable right now.

Barbara

Suggestions for High Calori Liquid Diets:
Fortify recipes with powdered milk
Add regular yogurt, cottage cheese and ice cream to shakes
Add 1 to 3 tsp vegetable oil to everything you cook
Lasagna, spaghetti, mac and cheese can be blended and liquidfied
Fruits-liquified with own juice, strained baby fruits, whipping cream, 1\2 & 1\2, cottage cheese, yog, custards, puddings, cheesecake, other juices, etc.
Visit www.liquid-diet.com\
Oatmeal: 1\2 c quick oats
1\2 c heavy whipping cream
1\2 c water
Combine ina micro safe bowl and nuke on high for 2 min. Remove and stir wellAdd raisens, honey, maple syrup, or brown sugar. Calories 714; protein 15 grams,grams fat 47,sodiun 47 mg, calcium 122 mg
visit www.cancer.org/docroot/MBC/content/MBC_6_2x_what_to_do_before_treatment_
http://web.cancernutritioninfo.com/main.cfm?id=1610RequestTimeout+500
Boy, I hope these addresses still work. Amy

Barbara S,

VHC is Lactose Free for what it's worth.

Re the double radiation, my RO tells me now that Moffitt is testing such things as nonstop rad, meaning 7 days a week; doubling up one day a week and twice a days more frequently. They say they think it's best not to give the cancer anytime to heal itself. This has just changed since I was Tx a few months ago so that thinking must be sweeping the cancer Tx community.

Tell him it's going to be rough either way so, even knowing what I went through, I would have agreed to double up if my docs thought it would enhance my survival chances. I really don't want to go through the Tx again so I would want to take the best shot.

Hi Barbara, I'm just catching up with your post and wanted to answer the question on what do you do during those it's all bad moments. Caregivers and patients are both experiencing cancer from different perspectives and there is no good role to play. It's a combination of fear, guilt, and a sense that all the security we thought we had just went right down the toilet. Time literally stops in the normal sense.

Fears about will this work or will it come back are more prevelent in the beginning when everything is such a raw nerve. It's hard not to second guess the decisions we've made but we don't have the perspective on knowing that there is no universal treatment protocol, that every cancer is different and treatment protocols need to be individualized for stage, location, nature of the tumor, lymph node involvment, and general health status. It's just too soon to be comfortable that we're doing the best we can with the information we have. There's a tendency sometimes to think that everyone must have a better treatment protocol - or at least an easier one and that consumed a lot of my energy at the point you're at.

Everything felt weird to me in the beginning and there were days I was positively manic in trying to be on top of it all. It was exhausting and in hindsight, futile. Fortunately that passes over time and although it doesn't get easier, it does get more familiar and somehow we get through it. I thought that time period was never going to end but here we are on the other side of the treatment portion, still working on recovery but finding a new normal.

None of our prior professional experience prepares us for this no matter what we did before the diagnosis. Whatever our lives were before, now we're patients and caregivers. Also the timing is never good, you dealt with this on your birthday, we dealt with it on our 25th wedding anniversary when we were supposed to be in Hawaii getting remarried at sunset on the beach. There's no good time to get cancer or short cut or easy way to live through the treatments and our fears, just know that over time you will put it all in it's proper place. Remember that a bad day is just one day - there will be others. We go moment to moment, and then day to day.

I'm also in health care working in home care and hospice. Despite my 35 years working with cancer patients and caregivers I can honestly say I was not in the least prepared to be one. I believe this experience is not over for Jack and I, but we are in a better place than we were and we've rescheduled that trip to Hawaii. Visualizing yourself in that better place helps. For me it was knowing that I had a gown, a maid of honor, and pictures of a bouquet and a cake that have been waiting since last February to get used. The hotel wedding planner sent me a Hawaii calendar to hang in our bedroom so we would know what we were coming to when all ths was over. Every month, I flip the picture over and think about how we're that much closer to getting there.

Before you know it, you're getting on with your life. Find your Hawaii to get through those bad days, and ask for help when you need it.

Regards JoAnne

Joanne,
That was so beautifully expressed. This post should go in the "getting through it' project as an inspiration in how to get through it.

Eileen

Joanne,

That was beautiful and so perfectly expressed. Leon was diagnosed in September 2005 with our 25th wedding anniversary coming up in May 2006(cancelled cruise)and our first grandchild was born in January when he was in the midst of radiation treatments, so you're right the timing is never good, but we got through it and so glad we are now at the looking back part of this whole thing.

Joanne,

That was beautiful and so perfectly expressed. Leon was diagnosed in September 2005 with our 25th wedding anniversary coming up in May 2006(cancelled cruise)and our first grandchild was born in January when he was in the midst of radiation treatments, so you're right the timing is never good, but we got through it and so glad we are now at the looking back part of this whole thing.