Francesca,
Listen to what your husband said. He said 'he wanted you to hate him so you wouldn't miss him if he anything happened to him'. That sounds like a statement of tremendous love to me. He is worried about you.

We patients can be very diffcult preople to live with as we go through treatment and recovery. It's kind of like we go through 'dry drunks' that alcoholics go through and in our frustration and anger, we can say things hurt the ones we love. I know my husband loves me dearly, but I also have seen unimaginable hurt in his eyes which I never meant to cause. Try not to take everything so personally.

It is very frightening to suddenly face your own mortality even if the dx is very good. Everything you had planned in life is put on hold because you don't know when you will get better or if there will be a reoccurence. I think it is only natural to want to do 'everything in life you always wanted' just in case you run out of time. But does that mean it won't include you? Just maybe he wants the both of you to do these things.

As to healing, I too had no peg and went back to work after 3 weeks, didn't need the pain meds. Lots of foods tasted awful, especially pork. Rare steak was the easiest. Eating out was a real chore. You just have to keep trying until you find what works for you. Different people heal at different rates, but if he is willing to keep trying and keep his nutrition up, he should do well. My nutrtionist put me on a high protein diet and zinc, a multivitiamin, 500 unit Vit C bid and 400 vit E bid to promote healing. Check with his nutrionist for what he should take.

I finished rad on Thanksgiving and we took a trip to St Kitts in the spring. I think this was very helpful for both of us. Getting our life back to something we had done before and proving to both of us that there is 'still life after cancer' and that I could still travel.

I hope things go better for the both of you. Get medical help if you think it is depression for either of you. Come back as often as you need to. There is lots of help on this board and a good place to vent.

Take care,
Eileen

Francesca,

It's terribly hard to see someone you love go through this experience. I was starting radiation treatments right around the time of our 15th wedding anniversary, and my husband had become accustomed to me as a fairly soft-spoken person. By about the halfway point in radiation, I was practically screaming my lungs out night after night because of the pain. I was angry about not being able to eat properly and about the frustration of constantly having to fight off infections. Fortunately, my husband was able to see that when I was venting I was just looking for whatever help and support he could give me.

Regarding your husband's plan to "do all the things he's never done" -- I definitely found myself thinking that way after treatment. Both my husband and I had become used to a workaholic routine: long hours at the office 6 days a week, forfeiting vacation time because we were "too busy" to take it, etc. Once I had recovered sufficiently to reassess how I was spending my time, I was able to cut my workload to a more reasonable level, and my husband and I consciously began to make more time to travel and enjoy outdoor activities. There were a number of things that I had planned to save "for retirement", but when I thought about the fact that I might not live that long, I started to do them earlier -- getting involved in volunteer work, learning to play the pipe organ, getting into gardening and orchid growing. As many people on this forum have said, going through the cancer experience usually leaves you with a sense of a "new normal", and in my case I have to say that the new normal is much better in many ways than the old one.

I hope your husband continues to see signs of recovery and that it helps to improve his outlook.

Cathy

Francesca, Welcome to the site. Sorry you are having such difficulties, I pray we can lend you some support. All of the above posts make a lot of sense and offer very good advice. Most of the people that responded have been on this board for a while and have offerred much help to others. You can be comfortable trying some of their ideas. As a male patient, I can give some of the impressions I had as I went through treatment and also the post treatment period.

I didn't want to know anything about the treatment for this disease as I was going through it because I didn't want to know what was going to happen. I knew I could handle what came along, but wasn't sure about anticipating what was going to come along. Same way I got through jump school in the army. Because of this, I didn't want to visit this site, even though my wife kept suggesting that I do. After radiation and chemo and before surgery, though, because I knew what surgery was like and what I could expect, I started visiting this site. I found a lot of comfort here as well as the ability to see that I was causing my family some grief due to my crankiness. This was caused a lot because of the pain and reaction to rad/chemo treatment. I kept working throughout my treatment and did not take meds during the day because I am a salesman and drive constantly. I didn't want to wreak the company car or kill myself by falling asleep at the wheel, so I went through the entire 7 weeks without pain meds. I did have a peg (feeding tube)put in as I couldn't even swallow my own saliva, it hurt so much.

Bottom line, I would suggest you show your husband some of these posts and suggest he might find some valuable information on this site. It turned around my whole world to know that others were having or had had the same problems and how they got past them. This could be very valuable for him. I felt funny about it at first, but very soon started visiting the site daily. It helps us cancer victims to help others through this rotten treatment. And there are many others out there who could use your husbands help. Is he going to continue to deny them the help he can offer? I pray he will do the right thing and start to help others on this site.

I thank you all from the bottom of my heart. You have given me a fresh perspective, and a glimmer of light at the end of an awfully long, dark tunnel. I am beginning to accept, that his illness is something that is not possible to share,and that I can only be a bystander. I understand wholly that he must get through this in his own way, and not to take to heart his many frustrations, which are understandable at the end of the day. I have shown him this site, but he does not want to know. I will reaffirm the point to him that he is in a most valuble position, that he can reach out and help the next poor victim through this. Because Doctors are invaluble, yes. But speaking to someone who is sailing in the same boat is even more so. I feel so humble to have met you all, you have given me the surge of energy to hopefully pass the finishing post! Love and light to you all, and may god bless you.

Francesca,
Wow...you opened a big box of help, didn't you?
I cried yesterday because Tom was being so "mean" to me - - all because I "made" him go for his chemo treatment. I got the silent treatment for the long drive, and then glares and terse answers/comments when we got into the hospital. I'm pretty sensitive, I know, but I was embarrassed and hurt. He softened up later in the day (great nurses helped).
I know he loves me - I know he is angry at not being in control of things - I know he hates being sick and unable to do all that he's used to doing. I am trying hard to gently encourage him to get into the office, etc., but I think he is a bit shy about letting everyone see him looking poorly. Honestly, he does NOT look like my Thomas....much too gaunt and his complexion has gone sallow. Sigh........it is really hard for me to see, so I know others would be upset as well.
When there are things from this site that I want Tom to see, I print them off and put them where he'll see them (even if he waits until I'm not around.) He ALWAYS comes back later with something that makes me know he read them
He really loves that I am taking care of him through the help I find here - and he asks about certain people from time to time. I know he'll want to go to the next reunion!
Hope you are able to find a way to communicate - even if it is through a counselor at first. 23 years is too much valuable time together to allow it all to succumb to this disease.
All the best
Nicki

Oh Nicki, I feel so bad for you, because I know how you feel.Sometimes I lock myself downstairs and just cry myself inside out. I have nightmares every single night, after finding it difficult to sleep in the first place.And having to observe other people's reactions to the changes in his appearance is most depressing.I can understand how isolated he must feel, and helpless too, because he is the strongest of characters. But he continues to work, he is in the entertainment business and steps on stage as if nothing has happened-he says the adrenaline takes over the pain enabling him to sing and speak! I do think we need counselling, but this may be difficult, as he commutes around Europe, returning home just a few days of the week, and I'm not sure such services exist where our home is based.(Southern Spain)Besides which he is awfully stubborn, and I know he would see it as a sign of weakness. As fate would have it, a good friend of mine here in Spain has just recently been diagnosed with thyroid cancer, and she was refusing further tests. I called her up and spoke to her for the longest time, and I will go with her for the next stage of her treatment. I don't know why, but my helping her, is helping me also.Her husband feels like we all do, but I suppose I am of use because in this instance I can detach myself emotionally.Whereas he is where I was 2 months ago. Does that make sense? Incidently, I never knew such warm and loving people existed on the Internet, and I thank God I bumped into you all.

Beautiful Spain!
Your friend is lucky to have you with her during this rough and scary time - and her husband will most likely lean heavily on you for information and support. I so totally hope we can be of a little help to someone someday - if only to feel like I have given back that which was given to us.
I have used an anti-depressant or sleeping pill since the initial diagnosis in order to get any rest. From the beginning, I felt like I wanted to 'get out' of my skin...it felt like something was touching my neck constantly and literally driving me crazy. That happens from time to time now....it was really bad when he was in the hospital and now, when I see the condition of his neck, it is almost non-stop. I don't recall having nightmares, but bad dreams, Yes
WOW! He is singing! How awesome. Tom's voice is a bit rough and low.
When did your husband go through all the treatments? He sounds amazing..
(I still have a pair of bandelleros from a visit to Barcelona a million years ago.... )
Nicki

Gary finished his Rad/chemo therapy 4 weeks ago. One month before that treatment began, he had a Radical neck dissection on the left, and a modified dissection to the right at the same time, surgery lasted 9 and a 1/2 hours. One month prior to the surgery, he had a huge tumour removed from the left hand side of his neck that was attached to an artery, and all the shoulder muscle and other tissue removed. Yes, he's been through the wars!And I have to admit, that there is probably other stuff that's been done that has disappeared from memory into the smog that now clogs my mind.I haven't used medication, but have probably overdone the wine a little, and although I know it's stupid, I continue to smoke, as I don't feel I can give up right this minute, although I know I have too.
A few weeks ago I was led to this site from another, by Brian Hill, who sent me an email. I read postings for a while, unsure whether or not I was entitled to gripe and groan when I considered what some of the folk on this site are going through.But I was in pain too. And then I realized that basically we are all in the same boat, patients and carer's alike. What still gnaws away at me though, was that Gary's illness was misdiagnosed for two and a half years, we were told it was an infection of the lymph node and there was nothing to worry about. I am so very angry about that.Yes Spain is beautiful, although a little cloudy (in more ways than one) at the moment.

Hi Francesca
The first rule of being a care giver for a man is that you are always wrong!!! The second rule is it helps if you can swing from the ceiling,the third rule is RED WINE.
I am a full time carer for my husband who is blind, and is in remission from advanced prostate cancer. ME I'm recovering from surgery for oral cancer to the tonsil area and the base on my tongue, YES I'm fine but I'm a not helping him by being ill!! yes if I sound bitter I'ts the red wine, We are coming to Spain for a month in November, so I hope the sun and sangria will help me forget the past few months, so take good heart, you are not on your own out there...
Sunshine... love and hugs
Helen

Hi Helen, wow what a lady! You put it all into perspective. I am sorry about your predicament, and no, you don't sound the least bit bitter to me. Brave, yes.If you are coming to Southern Spain, I would love to share a big jug of sangria and some stories with you, that would be so nice.