I'm living with a man who just had the confirmation here recently that he has cancer on his tounge and mouth and is needing surgery soon.. i understand hes in a lot of pain and it seems he doesnt want bothered.. but what i dont understand is how he can be so mean and push away the one that he claims to love... i dont know what to do for him... i know this is his cancer but he doesnt understand that it affects me too.. he has no idea how it hurts me to see him in such pain....i find myself crying at the drop of a hat here lately.. it doesnt matter where...home ..work... it just happens...WHAT IS A PERSON TO DO???...

Dear Barb - You've already done something really good by coming to this site. One of the worst times for a cancer survivor and for the person close to him is when you first get the diagnosis and the time when you can start fighting it. There is a wealth of information on this site and lots of helpful, caring people that will help. You can start by using the "search" function on the main page or at the top of this one. Do you know the stage of cancer and type of surgery? It is also important to be at a cancer center that has a team approach to the treatment. When my son was diagnosed with his tongue cancer, he was in a tremendous amount of pain, too - and this as well as the shock of the diagnosis can certainly affect a person's disposition. Did the doctor prescribe any medication for his pain? You need to think about yourself, too. Take deep breaths, and know that you can get thru this - a day at a time and sometimes more like 5 minutes at a time. If the anxious moments get really bad, perhaps your doctor can give you something. The more you can find out about what his treatment plan is, and what you both can do to fight the cancer beast, the better you both will feel. Being a caregiver is certainly no pic-nic. Sometimes it is really hard to know what to say or do for the person that means so much to you - but hang in there. Things will get better!

Welcome Barb

You have come to the best place possible for help and understanding.

Everyone here will help you and your mate get through this. They are all caring, compassionate people who possess first hand knowledge.

Please keep posting here and keep asking any and all questions and we will help you.

I have just gone through this almost identical procedure. I was scared and frightened. I too, was in a mindset that I would not get treated and that this was the end.

This was only because of my lack of knowledge. They removed almost half my tongue and I was talking and eating (soft foods) in 2 days. My surgery was 45 days ago and I can talk fine and eat anything. I had false teeth prior and I will need new ones after radiation treatment.

If I had teeth I would be almost normal and could eat anything.

It is a very scary situation when they tell you they want to remove part of your tongue.

The people on this forum gave me the courage and knowledge to fight and win against what we sometimes call "The Beast".

I am still healing but I am doing fine. I am working (more than I

This does not sound like a totally unique delimma Barb. If you surf around this board you will find some similar recent posts and they all seem to be from female mates. I'm beginning to think that this type of situation is not all that uncommon, especially during the early stages of the initial shock that comes with diagnosis.

Bill D.

Hello Barb

I know this is a very stressful time for you. I hope these messages have helped you.

Please keep posting here.

Some people prefer to respond to "private" issues through E-mail and Private messaging and I noticed that neither of these "OPTIONAL features are "turned on".

If you prefer to enable them I put the instructions below. Remember that this is not a necessity, only an option.

I am Praying for you and wishing the best.

Sincerely, Petey

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Good Morning Barb!
I think everyone here has felt something of what you wrote about. I too was crying at the drop of a hat....anytime, anywhere. I followed the advice of some wise friends here at the forum and went and spoke with my doctor about an antidepressant...I han't realized how much everything was really affecting me till recently. I started the meds and felt a lot better within a week or so.
My whole family breaks down at times, my mom, who is the best person I have ever met in my life turns into a bear at times and it's very upsetting. After a few gnarly growls she herself gets upset and ends up in tears. I wish the rest of my family could understand that she is venting and in pain. At times-she is awful. I dont' know if the meds helped me or it's my faith helping me keep everything together. Mom won't go on any meds, she would be disturbed if she knew I went on them. It may be something to look into. Also, my parents, who normally get along better than any two people I know, have moments of ugliness. It happens. I know that saying is probably true that when something bad happens to us we usually take it out on the ones we love most. I guess because of the trust we feel. Good luck.

Good Morning Barb, I am sorry your husband has been dealt this and for you too. Can he get pain medication from his doctor, sounds like he needs something to get him through until his surgery. And can you get something for the anxiety (which is totally understood) from your doctor? I am thinking of you and hoping things get better, you can pm or email me if you want. Carol

Hi Barb- I know how you feel. Just last night I had a crying fit and finally had to get some things off my chest that were bothering me. I felt bad about letting my significant other hear all I had to say, but sometimes you can't keep stuff pent up. My man doesn"t like to talk about it. Today he starts his 3rd week of radiation. He is gone for a week at time because it's a 200 mile round trip. Keep yourself busy. I have painted everything I can from doors to the cattle pen. I wish I could be with him everyday, but we have cattle, pets, and a huge yard to care for. This is a great site. I read all I can for hours. Hang in there.

I want to thank everyone here for the advice... i did get him to go to the hospital yesterday (July 1) he was in such pain and it was to the point that he couldnt even swallow his own spit..he is swollen really bad, the drs say he has an absess of some kind in his mouth and is full of infection in his tonuge and face and neck and nodes... its not good.. was causing him alot of pain in his ear and tonuge and face and neck.. i guess infection will do that..they have him on fluids because he was dehydrated and antibiotics and pain meds.. as much as i would like to be at the hospital i cant be there all the time.. its 2 hours away.. and i have a 14 year old at home and i have to work also.. but i will make it back to the hospital as soon as i can..i talked to him today he sounded a little better but not much.. still having trouble talking...as for myself i am on welbutrin and i do have a script for xanax to take as needed.. i have taken them here lately.. it makes me sleepy but it does seem to calm me down somewhat....well i must go for now but like i said THANKS AGAIN FOR ALL THE ADVICE.. i really needed someone to talk to..

Barb: I am a two-time cancer survivor, and NOW I'm on the other side of the fence, as a caregiver. Although husband has barely been diagnosed a month, I can already tell you that it is much easier to be the cancer victim! It's so hard to know what to say, much less what to do in this situation. Just know that there are others who are going through this, and we MUST lean on each other as much as possible. It has been most helpful to me to be able to 'vent' and ask many questions on this forum, as we are all in the same situation, in one way or another.
So, welcome, friend! Keep us updated on the progress of your loved one and we will definitely keep you both in our prayers! Lois and Buzz in NC

emmylou,,hope all is well with you and your cancer... and hope all goes well with your husband...my loved one is home from the hospital and while he was there they did an mri and the cancer is worse then they thought.. the surgery they wanted to do is gonna be more intense and involve alot more.. i think he has decided to not have the surgery done.. i understand his point in not wanting it done and i will support him in what ever it is he wants... i just wish it was alot easier...but they say cancer is the beast and i believe it...it sure makes a person look at life a little differently...i guess we just have to live it to the fullest while we can..they say that every one has there time on earth and when God is ready for you he takes you home...

am i wrong in thinking like i am?? i want him to do what he thinks is right but i dont want to sound like i dont care by not pushing him into doing the surgery if he doesnt want it..i love him dearly..would be lost with out him...i just feel if i push him into doing something he doesnt want to do then hes gonna hate me for the results that may occur...what should i do?

Hi all, this is Barb's man EzJim. I just have to type what the Dr told me he has to do. He will take at least half my tongue, because the cancer is in the root too, so he will take the floor of my mouth too. For this he will make a flap using the skin from my left forarm to make a floor. Then he will take skin from my leg and do a graft on my arm . I have to have my neck operated on too and maybe a little more. I will also have a trach and a feeding tube will be inserted into my stomache. He can't tell me how long I will be like this and can't guarantee if it will work. Now you know why I might refuse the operation. I want my last moths or weeks to be good ones and not looking into space.Barb is too pretty a woman and much to nice to be tortured.

Jim, I read your posts in the other topic too. But what you said here about "wanting your last weeks or months to be good ones" really hit me the wrong way. With all due respect to those fighting this disease to the death, if you read peoples accounts of their loved ones dying from this disease, those are not what anyone would call "good" last days.

You have a 50/50 chance of not having this disease cause your last days at all! Do you really think you are doing your loved ones a favor by giving in to a nasty, not so good ending without even taking the chance you can beat it?

Nelie

Jim,

I'm married to a pretty woman too. As for surgery, I had pretty much evertything you describe except the tongue; instead of that, I opted to have half of my jaw removed, the entire fibula in my left leg taken out to rebuild the jaw, and skin grafts from both legs to fill in the extra holes. Oh, and let's not forget the neck dissection, the removal of the jugular, 56 lymph nodes, and a couple of "not too important" muscles.

Are you sure it's Barb you're trying to keep from the torture??

Sorry to be harsh, but do you REALLY believe that watching you succumb to a gruesome demise ( and it IS gruesome...slow, painful and ugly) is less tortuous than the treatment?

I know what my pretty wife would say; "give your head a shake. Better yet, come closer so I can grab you by the ears and shake it for you!"

I've got enough scars for six people. I limp, and sometimes I drool a little when I eat because part of my lip is numb.

I also value every single day I have with my pretty wife more than I have ever valued them before. And you know what? She still loves me, tells me so every day, and kisses me every chance she gets....and this after so long we have 3 adult children.

Treatment for oral cancer is hell on earth. It is torture, really and truly. It is also the ONLY chance you have to have your last days on this earth good ones. If you don't fight, and fight with everything you have in you to fight, this Beast will make CERTAIN your last days are so far away gone from good, you truly can't imagine how awful they will be.

your actual mileage may vary, but not by much
Wayne

Wayne I do know the tortures caused by cancer only too well. I was the caregiver for my mother and for my best friend. And yes it is hard.I never had a day that I could call my own, but I sure did the job of caregiver and with pride. I'm sorry you have been thru so much and admire your courage. I hope one day soon you can write in here and tell us you are almost back.. Have a good day and good luck in everything.. jim

I agree I need a second opinion and will try to get a refferal to Ohio State and begin doing it tomorrow.. We don't know each other but I luv you all. ezjim

Barb - you re right - Cancer makes you look at life differently. It makes you see the real inner beauty in a person and helps you to really appreciate life. Jim - sounds like you have someone so special who is willing to go all the way in fighting this cancer beast! But she can't fight it alone - it will take the two of you to beat it. When you talk about the "torture" of putting her thru this - it may just be torture for her to stand by and not be able to do anything. I know that when I was caring for my son thru his worst days of recovery, just being able to do something for him whether it was taking him to appts, making phone calls, fixing soup, holding him when he got sick or depressed - this is what kept me going, kept me sane. Just the thought of his giving up the fight would have been torture for me. I know we are all different in our reactions and your feelings and decisions are your own. I just hope you do decide to put up a good fight. Life is worth it.

And Wayne - you truly are a beautiful man! No wonder your pretty wife kisses you every chance she gets!

and i will make sure he gets a start on that second opinion...i love him to much to see him give up this way

Anne-Marie,,,yes it does hurt me to just stand by and not be able to help...i really want to be able to help Jim... but i hate to say it but the old saying goes..."can't help someone if they are not willing to help themselves".. sometimes i wonder why some men have to be so hard headed..but no matter what i still love him...

you know i have read alot of stories on here about people and their cancer and some of them give me hope and some make me want to run from it all...all i want is for jim to get better... on one hand i want him to have the surgery he needs and on the other it scares me to know hes gonna be in pain and inmobile for a while...but im willing to take what ever it is life throws at us and help in any way i can..i love him and would do anything for him...

Barb, you've got a good guy there. He's doing the right thing...he's fighting. You're doing all that anyone could possibly do in the circumstance; standing by him.

I can tell you with absolute certainty if it weren't for my wife and kids in my corner for every round of my fight, I would have gone to the canvas early in the third round.

They kept me swinging through all 15, and I scored a TKO. There may be a re-match, but with my team behind me, how can I lose?

Be there in Jim's corner. It will make the difference, I truly believe that.

Have a good weekend
Wayne

Wayne,,,
glad to hear your battle is being won.. and yes i beleive that family and friends have alot to do with the fight..Jims got a good group of kids that will be there with him and me and my daughter are with him all the way..as he said before hes 71 and im gonna be 38 next week and he says he dosn't see what i see in him but i see alot in him hes a good man we have been together 4 1/2 yesrs..my daughter is 14 and she worries alot about Jim..she will come in the room and say "mom Jim dosn't look like he feels good,, i think you need to take him to the doctor or the hospital"... we are gonna do the fight and im glad we got people like all of you to help us thru...Jim came on this site first and of course i had to follow to see what its all about and im glad i did....HUGGGGGSSS TO ALL
Barb

Barb: My husband is almost 77 and I just turned 56! We have been together almost 27 years and they have been the very BEST years of my life! One of the traits I found most attractive was Buzz' strength. I have learned SO much from him over the years. He has been my 'rock' through two bouts of breast cancer, and helped me raise my boys into the successful men that they are now. I can relate to your loving Jim as you do. Now you and I must be the strong ones! Together, I believe we can do this!

Barb --

If possible try to get Jim to get another opinion at a cancer center where they see a lot of bulky, agressive and extensive disease. Take a plane trip if you need to.

For example when my husband Barry started treatment at Hopkins there was another fellow starting out, who had a large invasive tumor of his palate, tongue, roof of mouth with lymph node spread. He was having trouble swallowing and was already in pain. He went into a trial with a targeted therapy (Tarceva) with an induction phase of three weeks (as I recall) of daily Tarceva. At the end of the induction his tumor had shrunk 50%! He then received chemotherapy and radiation (cisplatin and IMRT) for the usual 7 weeks, which is when we saw him every day as he was on same schedule as Barry. He had been very despondent when he entered treatment but was much more optimistic as the days and weeks went on, though of course it was a very rough time (as it is for most).

Wish I knew how things turned out at the end for him but at least he gave it a real fight and the last time we saw him he said that his reports were looking good.

I would definitely try to get to a CCC (Sloan-Kettering, Anderson, Hopkins, Dana-Farber, Moffitt, Mayo and others) where they see lots and lots of head/neck cancer patients and also, lots of clinical trials for extensive or recurrent disease. (In fact I think a second opinion is needed in most cases, if only to give peace of mind that you have explored all options, we went to Sloan).

As many have posted this is not a nice disease and not a good way to go...

Gail

we are trying our best to get the second opinion.. just have to wait for a refferal from the family dr. and insurance to be able to go..i wonder if he does go to ohio state do they have to start the whole process over again with test and all that before they can do anything?

If it's anything like my husband's experience when he went for a second opinion at Hopkins, you will be asked to either send in advance or bring with you copies of everything that has been done so far -- CAT/PET/MRI scans, doctors' and hospital notes, biopsy results, etc. Hopkins also wanted an actual slice of the excisional biopsy for the pathologists there to examine and confirm the diagnosis. (Pathologists who deal only with head and neck cancers can often pick up on subtleties in the biopsy samples that others may miss.)

Check with Ohio State about what they want -- you can start pulling all that information together while waiting for your family doctor and insurance to process the referral.

All the best,
Leslie