Dear JoAnne and Everybody,

Thanks so much for all the thoughts and wisdom. People really don

Barbara,

Believe it or not, the first 2 weeks or so AFTER Tx will probably be his WORSE. Be prepared and somehow WHEN HE'S NOT FEELING TOOOO BAD, work that into the conversation to make sure he doesn't think the last rad day is the end of his torture. It's definately a great milestone but he will still have a week or so of pain, etc left. Then it will get better quickly, almost overnight which IS SOMETHING TO LOOK FORWARD TO.

One more thing re your comment "not that I am so great".....You are worth your weight in gold to him right now and he won't likely ever forget it. I only wish I live long enough to show my wife how much I appreciate what she did for me.

David,

I have told him a few times that it does not get better immediately when tx is over, but I am not sure that sunk in yet. He is really looking forward to feeling better and to hopefully being able to enjoy food again.

Our doctor's favorite story was about his boss who had the exact same type of tumor and treatment as Michael. Our doctor says his boss was back in the operating one month after his treatment and surfing three months later. I, at least, have really latched onto that good outcome scenario.

Michael did actually ride along with me on my errands today and we were out for several hours of non-medical time. Nothing really fun, but it was nice to have him along and I think he enjoyed being on a route other than to the cancer center. He even helped me shop a little at the grocery. I keep trying to keep him out of crowded places, but he sneaks in once in a while and I try not to panic. I know I hover and do panic at times when he gets around many people. Not that he isn't potentially being exposed to a lot of extraneous germs at the hospital. Michael used to be our primary grocery shopper and really is much better at it than I am. I do keep telling him how much I did appreciate all the things he used to do that I took for granted.

Barbara

Hi, Barbara. When John started having alot of trouble sleeping at night and needed to use the suction machine alot during the night, he moved to the downstairs guest room. I bought a baby monitor, hung one speaker on his bed frame and the other sits on my bedside table.I can hear him move around and if he needs me, he just has to speak my name-not yell. This has allowed me to sleep better at night and he knows I'll be there when he calls. When we have to spend the night in a motel, I get a 2 room suite with a micro, frig and sometimes a small stove. I take food too because eating out is not on our agenda at present. The 2 room suite also allows John to crash when he needs to and I can stay up and not worry about disturbing him [or visa-versa]. And you are right, for a while yet, you are in a whole different world, one that has a language of its' own and challanges you never dreamed youall might face. You just have to stay very strong and start each day with the attitude "we can get through this". Please take care of yourself so you can keep taking care of Michael. Amy

Hey Barbara,

Don't worry about the hovering thing, we all did that it's part of caregiver syndrome. The important thing is to remember to back away from that when he starts to feel better, but for now it's needed. David is SO right to point out what a critical role you are playing, don't sell yourself short. After this is all over you'll be leaning on Michael again but now you're both doing what is needed to get through this.

I remember that it was hard for me to think about things like going back to work at this stage, you have to concentrate on getting through the treatments. Most of us go back because we have to, we still need an income and health insurance to pay those bills that don't care about the cancer we're dealing with. I was on FML for 7 weeks and when I did go back I organized our friends - and anyone who looked remotely interested - to help transport Jack to and from daily radiation treatments and the physical therapy, speech therapy, oncology dentist appointments and that was a BIG help. I still went with him for the doctors visits. People are pretty amazing in situations like this. Also, he really is going to be worse after treatment ends so you have to consider what time off you may need at that end. If there is any flexibility to go back part time, FML can be taken in hourly increments.

I'll bet he did enjoy getting into a non-medical setting, it's a connection with his interests and pre-cancer life. Jack is the cook in our family, I'm the microwave queen, and when this happened I had to relearn some basic skills so we wouldn't starve.

The first time he asked for dinner I offered him a frozen Jenny Craig meal. Turns out that's not entirely normal so I had to modify my behavior. Jack likes grocery shopping too - plus he knows where everything is in the store. He came with me on days he was up to it just as a diversion. When he wasn't, I had him help me make up the list and then tell me where I could find it in the store just to keep him connected to something he really enjoyed. As long as people are not getting up in his face it's probably fine that he's there. Don't forget outdoor places particularly if they have benches. I took Jack to the Jersey shore one day - about a 45 minute drive. We didn't stay long and he was nauseated coming and going but he was one happy camper when he was sitting on that beach. Supplies, medicine and food can be packed in a bag and go with you. When he needed to use the PEG tube we just went back to the car.

I also discovered that cook books are like a procedure manual and incredibly helpful for those of us who prefer to order out. On the home page you'll find a products link and there's a cookbook for easy to swallow, easy to chew foods - and more importantly easy to make - that I quickly ordered. There were lots of ideas that helped him maintain his swallowing during and after treatments. He had a PEG tube and used it often but he also kept swallowing something every day to keep the muscles working. I'm happy to report that Jack's back to cooking now and still using ideas from the cookbook.

Micheal will enjoy food again but be prepared that his taste will go and the burning in his throat will temporarily halt that. It will feel like it's never going to end and never going to improve but it does. He may not be able to process all that information right now, but keep telling him because he's probably hearing it on some level.

David, you are so sweet when you post about your wife. It's amazing how an experience this awful can reveal the wonderful aspects of our relationships with people we love. Some things you just can't buy in the store.

Regards JoAnne

I need to make several prefaces to the following remarks. 1st, JoAnne and I have been communicating via e-mail for quite some time now and many of her e-mails have had me laughing for hours afterwards-just like the Jenny Craig dinner comment. I've got her beat in the cooking department, but she's way ahead of me in her nursing skills and her ability to find ways to cope using humor and wisdom at the same time. One of the things that has often been revealed to me on OCF is how much we all do have in common. My husband used to be in charge of the grocery shopping and did more than his share of the cooking [altho I had to teach him the "Southern" way of doing things:D]When I started going to Walmart with the list, John would tell me what isle to find each item on. We used to split the household chores and we went to work together every day. Just like most here, this disease has changed our lives forever. It has made us appreciate our marriage and partnership more, it has confirmed why we fell in love and it has revealed to us the strengths we did not know we had. Barbara, I,too, have hovered [still am] and have earned the nickname "Nurse from Hell" that John fondly [I think] calls me. But we are in this fight together and since he is working so hard, I am going to do the same. [Sometimes our directions are a bit different, but that's to be expected]. So, Barbara, welcome to the Caregivers' Club. Just remember, you got friends here and support when you need it. Fondly, Amy

Michael did eat relatively well yesterday, but he still looks thin to me. We haven

Hey Barbara,

Sounds like a great idea to send out the annual cards and letter, particularly ones that are special like you've gotten. You've expressed some great sentiments here in your posts so that's a good start. You're in the right direction and it's something you and Michael can do together. Some days you'll encourage him and some days he'll encourage you. TEAMWORK!!!!

By the way what does an egret look like?
Regards JoAnne

JoAnne,

They are big beautiful white birds with long necks and long pointed beaks. They eat mostly seafood and small reptiles but will eat just about anything including table scrapes. If you leave your door open they will actually walk into your house looking for handouts. If you give in, you have a new "pet". One did that a few years ago in our house only to be greated by our 8 cats. He never came back, nor did his friends and my cats were glad because they can stand 4' tall with a sharp 9" beak. LOL

Hey Barb,

Try scrambled eggs, Oatmeal, Matzo ball soup. I lived on scrambled eggs with cheese, oatmeal with lots of brown sugar and yes, dare I say, butter, and matzo ball soup. I don