ENB diagnosis this week

Welcome to the group. Waiting is part of the game; waiting for test results, treatment plans, getting the therapy started. My journey with cancer started 16 months ago, and I've been cancer free for the last eleven.  It will be rough seas for a while, but consider everyone here to be your crew. (Saw your boating picture.) Head and neck cancers are not that common, so it will be good for you and your wife to connect with others who have been through it. There is even a caregiver's group on this site your wife might like to join. Make sure you don't keep your cancer a secret because most women need to be able to share their feelings. Support from friends and family will be very comforting for her. I wish you the best and will add you to my prayers if you like. 

BSauls, I'm glad you found this board, but sorry you are in need of it. Speaking as a spouse....who says your wife doesn't want to walk this road with you? I understand wanting to spare her the trial that lies before you, but together you are stronger and better able to face the evil that is cancer. Cancer is horrible, it is evil, but I'll tell you a secret...battling this cancer has brought the relationship I have with my husband to a level I never thought possible...and we were pretty devoted to one another after 30 years of marriage. Cancer has made our commitment to one another even stronger.

How can you help her? Be honest, share your worries, your pain and your hopes for a good outcome. Remember to touch her face and stroke her hair every once in a while. Allow other people to lend a hand. Let your wife express her feelings and give her time to cry if she needs it. Try to find something to laugh about at least once a day.

Use the board here to ask questions and get support. We'll be praying for a good outcome and will lend moral support for every step you both take.

Barbara

As a caregiver to my husband, I went with him to every treatment and every doctor appointment.  I was with him every step of the way, but he made all the decisions when it came to his treatment and how he would proceed.  My saying was "I was only along for the ride" and I also told your grown sons that they should honor their father's wishes.  He fought the good battle for 5 years but lost it in July, one month short of our 53rd anniversary.  During our journey I did find that he wouldn't tell the doctors the truth about his pain or basically how he was doing, so I would speak up and tell them and of course, got dirty looks from my husband.  LOL 

Yes it will be hard on her but treatment will also be hard on you.  Like everyone will tell you drink plenty of water to stay hydrated and swallow, swallow, swallow even though it will hurt.  Radiation, if you have it, is the gift that keeps giving and giving.  We were told going in that not many complete radiation due to the side effects but my husband actually completed two different rounds of radiation treatments 2 years a part.   

I found during my husband's journey that this site was an excellent source for help.  But I also found that doing research and looking at cure rates, etc. was different regardless of what site you go on.  My husband's second primary was considered a rare spot and survival with or without treatment was the same.  Well he outlived those survival rates.  At his age (73) when he first underwent radiation, chemo and then surgery our head and neck specialist was very surprised at how well he did and was always telling us he should be the poster boy for head and neck surgery.  It was always a joke with us.  Be confident in your doctors and if you don't agree with them, get a second opinion or even a third.  I remember my brother-in-law had to fight with Kaiser when my sister was diagnosed with breast cancer about her treatment and doctors.  I also found during our journey that I had to fight with our insurance regarding approval/payment of certain tests.  But we always won. 

Have your wife read the posts on this site for help.  It won't be easy for either of you but both of you need to take care of yourself.  Don't hide things from her.  Many don't tell their spouses what they are thinking or how they feel.  They tend to shut them out because they think it is helping their spouse when in reality it is hurting them.

Wishing you and your wife peace and comfort -- Sharon

First welcome to the H&N group. Very sorry you need to be here. Not only does this scare you but it is more unknown to your wife and is extreamly hard on them. This it where you both must talk and explain and share your emotions. Yours is a rare one but if I remember we did have at least one or two who did have this and did fine. I will agree with all the others as you should read the superthread as it will help. I had only surgery so I can't really answer much on chemo or radiation as my knowledge is from just being here. Mine was SCC of the larynx. it was 3cm just above my vocal cords and pressing on the left one. Just before surgery it was staged as T4;N2;M0; but after is was only T3; N0;M0; so it can change when they do treatment. My lungs are bad and the only way they would do the syrgery was if they removed my whole larnyx and I breath through my neck, which I agreed to that as thet asked the question. I waqs prepaired for almost anything they could say, just wes not ready for that. Only five belived I would pull through this as I was Very pale and very gray in color and was coughing lots of blood. Of the five that did belive I was one and my wife, doctor, and only two at work out of 250, and my son and brother did not really believe, just hoped. 

The reason I mentioned that is many were talking to my wife and telling her to be prepaired that I might not make it through the surgery. She did not want to go there and for herself needed to belive in me. She would even have to tell her family and friends, not to talk to her like that. She is very strong is a understatment, as she became my rock I needed. I am a lot like you that I am very self reliant and have always been, even when My lung colapsed when I was about 31 and it did it twice and aone infections like Valley feavor which has scared my lungs, and stage 3 COPD. That is why many were afread I would not make it. I told my wife not to wory that as soon as they cut out the tumor, I will be fine and I will even go back to work in ten weeks. I had to learn how to swallow, and talk all over as I had no voice box. I went back to work in 10 weeks just like I said. To make this much easier on your wife she need to hear from you how you are doing honestly. She need to know you are scared or even worried, but she has to do the same for you.

This is a very rough road you are going down and can get real bad at times. You can and will get through this as others have, but it is a fight for your life. Sorry if I get a little blunt, but you will need to know the truth. As of now you are not alone in this fight. We all will be there for support for you and your wife as well. We have many caregivers in the group and they all know how hard it can be on her. When you have those bad days just remember, take it one day at a time. What happened yesterday does not matter as that day is gone. Today is the day that matters. You just do day by day and on some very bad ones, you go hour by hour. You will have the strength to overcome so much more than you can imagen. Sorry if I get long winded, but I am very passionate about this, and know you will get through this. I will keep you in my thoughts and prayers. Also remember we're open 24/7 it you just need to talk, have questions, and vent.

Bill

Bsauls94518 said:

Welcome

Hi phrannie,

 

I know my wife will be awesome at the care giver position.  She is my soul mate and the best thing in my life.  It is great to hear that it brought you guys closer as I worry about the stress and strain that treatment will bring.  I guess the best thing I can do is play the cancer card and line up her support team.  She is very strong and I don't wnat others to think we got this and not offer up help.  Just reading these posts makes me feel that I am not alone and we can tap support from so many others!  

on here most of last year with the same dx as you have....her screen name is Goyca....if you go down to the end of her "story" page, there is a place to send a private message to her...that in turn will send a message to her email letting her know there is someone here messaging her.  She made it through this with flying colors....so would be a great person to talk to.

Her page is:

http://csn.cancer.org/user/225322

p