Another newbie

You don't sound like an...

unsympathetic cow.....you sound like a concerned wife who's husband isn't following instructions.....and you want him to do everything he can to get passed this, and heal.  I weighed 97 pounds when I started treatment....and weighed 80 when it was over.  Back up to 90 within 3 months of finishing treatment, and there I've hovered since (three years ago).  I didn't lose near the amount of weight that others have lost....as long as he's eating plenty of protein, and drinking lots of water, he'll be ok. 

Good for having lots of aloe vera in the house....you might want to add a couple tubes of Calendula Cream to the arsenal....I got the kind for baby's butts at the health food store.  Very healing.....I'd put the aloe vera on....let it dry, then put on the Calendula. 

The acne from the Cetuximab will disappear quickly when treatment is over.  The good thing I've heard is....the more acne, the better it's working!!!

p

 

horse, cow, mule, chicken all are welcome

Amelia69,

Welcome to the H&N forum, sorry you are here, but we’ll try and make the best of it.

Your husband needs to keep his head in the game and stay hydrated and well nourished.  These 2 things alone can make life (during treatment) very bearable.

I also was given Erbitux, in addition to the acne my eyelashes grew, my fingers cracked and I lost a big toenail.

Keep your team informed on all changes and side effects, try to move around, be happy and take it as it comes.

Good luck,

Matt

Barbaraek said:

Amelia

Welcome and sorry you have to be here. This is a great place to get information and support. There are plenty of caregivers like yourself on the board as well as those fighting the disease. You will have your own unique set of challenges as a caregiver. Oftentimes I feel like such a nag - but try to remember the final goal. Picture yourself as a cheerleader/personal trainer and that will help. When all else fails, collude with the Doctor- I did when I had to. 

Buckle up for a roller coaster ride and allow friends and family to help you. Let them make soups, run errands, do a chore, and try to take some time each day to do something that brings you joy - whether it's reading, a craft, soaking in a hot tub, just something daily.

This message board is available 24/7 so feel free to post your questions and don't hesitate to vent or ask for support.

"another wife"

barbara

Sounds a little depressed

Hi Amelia, now that conjures up images of a pwerfull human being as you obviouslly are. All those things that you are doing, taking care of the kids, the house, work and the hundreds of other things in running a household all contribute to  taking care of your husband, they all count. Please don't feel inadequate because he won't eat. I would have died without my wifes reminders to eat, short walks around the neiborhood and general support. Colluding with the doctors is fair game in this battle as Barbara advised. Feel free to cheat and add butter to his soup, olive oil to his salad, whipped cream to his ice cream.  He is progressing through some dark times psychologically and depression is part of it. If necessary collude again with the doctors and get him some anti depressents. I was one of those that needed a little help in that area.  Your analogy of going over a cliff is probably spot on, But you folks will climb out one day very soon. Realize it's not personal, just part of his accepting what is happening to him as you do the same. Trust your insticts as he will likely need you to take charge for a brief while. All the best to you both.

What helped me the most...

I had already been told I would lose my larynx but could still talk but would have to learn all over to swallow, eat, and even need therapy to speak before I had my surgery. I was coughing up large amounts of blood, ounces at a time and not many thought I would make it through this. I knew if they remove the tumor I would be ok, so I believed and only four others, and that includes my wife and doctors. When I came out of surgery I did not go to ICU, I went to my rome so I knew I was going to be fine as most have to have one or two days in ICU when they remove the larynx. I learned very fast this was a major life change so I had to learn all I could to take care of myself. When you become a neck breather everything changes. You have no smell, cold air hurts to breath in and you see your breath coming out your neck. Then you are told you can't blow out candles, food will always tast different because you can't smell. If you get a mucus plug way down your stoma you can stop breathing, so you learn hao to prevent it and what to do if it does happen. Don't use spray cans as it will go right in your lungs and if you don't cover the hole in your neck you can inhale a fly, no joke. You can't whistle and so many you can't do. You first need to accept it. Then you need to know you were just given a second chance on life, and it is up to you to make the most. So for me it why can't I do some of those things. If I block off my opening I can talk because I have a prosthesis valve that lets the air go through to my neck and I can talk. So why can't I whistle? I worked on that every day all day long and it took two months, but I can whistle. I told my SPL and she said no you cant whistle with a laryngectomee. So I told her I can and I can also blow out the candles on a cake. So I took a tissue and set it on the table and then blew it off the table, then whistled. Thought she was going to fall over. She has been doing this for close to 35 years. So I pulled out a balloon and said I was going to blow it up, [ I also have stage 3 COPD] she said wait, I need ti film this because this has never been done. So I blew up the balloon. Now if I can I know others can as well. so she asked if I would make a video on YouTube so she could leagley use it to show others. So I have found a new purpose in life for me. 

Celabrate evere little thing he acomplishment as what is little to others is big to survivors. Do your best to enjoy each day and get a sence of humor helps too.

https://www.youtube.com/watch?v=sL-ZuyhSMEM  Blowing up a balloon. The videos are really for ones who lost there larynx. They have now been seen in 45 countrys and have helped many get a lung function test they say can not be done with neck breathers, but it can.

He will beat this, just be paitent as it is a slow process with chemo and radiation. You both will get through this and enjoy life once again.

Bill

Welcome

It's a little late, but I wanted to add my welcome as well. Although your husband isn't very far along into his treatment and his sense of taste may be intact,  I will attest to the fact that his appetite may already be affected. I had radiation with cetuximab and started to lose the desire to eat after the first chemo. For the first time in my life, people were pleading with me to eat! Whatever your husband eats should be high in protein and calories because he won't feel like eating much for quite a while. His doctor or nutritionist should be alerted that his appetite is poor so they can give you suggestions. 

Many times people want to help cancer patients, but don't really know how. Don't be afraid to ask for help, even if it's just to give you a little time to recharge. Come here anytime for practical advice and emotional support. I'll be praying for your family too.