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First off, post what you need to post. What's why we're all here...to support each other. Second, if you're not totally nuts with all you're going through then you should be. Thirdly, no chaplain in his right mind should have ever given you a diagnosis...not his job!!! He should have referred you to a specialist. I know when my mom and baby brother were killed in a flood in 1981 which also destroyed our family home, after the clean-up, sorting through what was left and the funerals, I went home and sat in a closet and slept for 2 weeks. It's called coping which we all have to do if we want to save our sanity. We each do it in our own way. You family knows you love them and are coping as best you can. Also, you need to GET MAD at the doctors who have failed you all, the ones who have "sat and waited" on your husband's issues. Getting really mad and fighting back may be your saving grace. I've lost enough people in my life (mom, dad, baby brother, granddaughter I never saw plus numerous others) that if you ever need to talk, please let me know.

Oh, I also suffer from depression and am on medication (which ain't working so well right now). My DH had a massive seizure in January of this year and now (which lasted 20 minutes and is a long story) is disabled with NO short-term memory. He can no longer work nor drive nor remember what I told him 5 minutes ago. I feel your pain and am here for you if you need me.

Linda in SE Missouri

Welcome Debbie..this site has been a life saver for me...hubby had a massive stroke five years ago and a series of smaller strokes since then...he has dementia, is bedridden, no short term memory and can't speak but a few words..he is 24/7 care. Luckily I have a shower aide that comes twice a week to help me get him in the shower and I have respite care for four hours a week but it is difficult. I totally understand the lonliness...it is terrible and everyone on this site can relate in some way to that and we all support each other! So please continue to come here and post...your good days and your bad days because we all have them and just hold on to each day and we will all try to help if we can with our advice, a hug or anything you need...you are in my prayers! Welcome to the group!!

Yes keep us poisted as stated we are here to help each other when we can

nancy

You found the right place. Everyone here can empathize with you. Our health issues vary, but we have and are feeling much the same as you much of the time. My husband is dying. I don't know how long he will be here, but I doubt there's another year ahead for him. He could surprise us though. He's already surprised the doctors. They figured he'd be dead two years back. See, doctors can only guess. The one thing I think that helps me keep my sanity is knowing that the spirit and soul survive death and exist elsewhere, where the person continues to grow and learn. I know we will see our loved ones again. My mom surely saw and talked with my dad. My husband has seen and talked with his deceased grandparents. If you have some kind of belief system it helps. I just feel it has helped me.
I send you blessings and prayers that you can continue to care for your husband and accept what ever might be ahead for you both. My husband's aunt has fought untreatable, incureable cancer 5 times now and she is still surviving against all odds. But if it is meant for a person to go, we can't hold them here. We can only do our best and accept the changes as they come.
Many blessings...........................

Hi Debbie - this group is caregivers for spouse. We talk a lot about our spouses but it is here for you so you post whatever you want.

I felt that I was always expected to be more than a wife. I did not pick nursing as a profession or doctor but you are called upon to manage someone elses health care and it is a very hard thing.

The doctors and nurses are people just like you and your husband. They try to do what you want but one thing your message did not say is what your husband wants...after all the treatment, he may be approaching the time when he would be better off stopping the aggressive treatment and getting some quality time with you in the time he has left.

He is approaching 50 and has been treated for cancer for 16 years. I couldn't do it - I have a living will that will stop treatment with a terminal diagnosis. I believe that cancer treatment buys you a little time but a cure? never!

You are heros to me - both of you to fight this fight so long. Who wouldn't have depression!! I want to send a big hug and I hope you have some sort of faith to carry you through.

Stop and talk to each other and get a strategy about what you want to do now...you may want to begin comfort measures and enjoy the time you have left without pumping him full of poison. If you change your course of action - it is not failing...it is being brave and kind.

I just lost my husband due to bladder cancer and dementia. It has been less than a month. The only comfort I have with the profound loss is the thought that his suffering ended that day. We are here for you.

Oh HippyGirl, I am so sorry for your loss. I truly truly am. I can't imagine..Please, let me help you if you need.It's the only thing I know how to do. I need to help people, its the only thing that helps me cope. Making someone feel better hopefully. Be there at the other end listening to someones silence, and understanding everything NOT said..just, being there, for you. For anyone, who needs that comfort, be it silent or not.I'm here.

Thank you, from the bottom of my heart, for the kind words. As far as heros,I don't know. Faith, yes, I have very much faith,and that hug, I needed, so so very badly. Thank you thank you. Both of our families? Have scattered like roaches when you flip the light on. There is no one. Believe me, when I say I felt that hug.

Joe, refuses to discuss strategy. He says, IT'S MY BODY NOT YOURS! But...he wasn't like this the first two times you know? We cuddled, we talked. Now? He has said things to me,that have made me feel guilty for NOT having c***er. He has become, very very cruel, and has refused all therapy offered. He says "I'LL BEAT THIS NOW LEAVE ME ALONE!". But, that to me? Sounds like fear. After you read this though, what he is ALLOWING himself to be pushed into? Makes no sense at all.

As far as what Joe wants,he WANTS this aggresive chemo. This poison that makes him threaten to kill me because they gave him to much steroids with it,without TELLING us they were giving it to him.

He will not give me a reason, he will not, give me the time of day. He will not speak to me, at all, unless, he wants me to call his emend in, or pick it up, or berate me to where, even if I tear up? He makes fun of me for being a baby.A sissy la la,a 52 year old crying infant. Yep, very very cruel...so I'm not even allowed to cry.Being agorophobic? I have no where to go, but to stay, have him follow me, and take it. This is not the man I fell in love with. This,is what the chemo turned him into.

I no longer feel like his wife, but a shadow. A shadow in the dark.

I walked past the tv a few weeks ago. He was paring potatoes. I didn't do anything. I was going out to get a cup of coffee, and back upstairs, so he wouldn't get upset and yell, which he does to my daughter & I only, all the time for no reason..

He said really low, and reeeally slow "If you think...for one f-ing minute, I can't throw this knife and hit you right in the heart & kill you? You better think again". I stopped in my tracks. His face,omg,his face was like Jack Nicholson in the Shining.I stopped on a dime. I said "What did I do?" he said, "get out of my f-ng face, or I'll throw it right-now", and he meant it. So I went upstairs,called the Dr. ASAP and they said they gave him a heavy dose of steroids the week before with the chemo!

This, was NOT, my Joe. I didn't know WHO he was ( I still don't).He had roid rage from the chemo mix! They TOLD me to have him ARRESTED if he touched me? What!? How can I? He's SICK, from this chemo, and they want me to have him arrested & thrown in jail?? What the h*ll kind of place IS this!?

This poison, yes, you are right,that he choses to take..he WANTS to get this chemo, vomit bile/blood...his esophagus basically because he can't eat for 10-12 days afterwards. This poison, that they have to counter with a shot to work on the "neurons of his brain beause most people don't know what they're doing, and will go to the bathroom anywhere, anytime",including "squatting in the hallway". That, hasn't happened. yet...

If his throat surgeon knew about this? He would throw a fit, the lung surgeon already has.But Joe? Won't listen. He knows, but, he can't think straight. He doesn't comprehend the reactions of his actions. It's making him an entirely different person.One, that I do not know..one that doesn't remember the that person I really am,not, the one who he has twisted in his head.

(Jumping topic,I'm so sorry)

The c***er in '94, was adniocarcinoma of the intestinal tract.The gastro insisted on being in there with the surgeon.He came out to me,and was crying..he said he never met a man like Joe, right before they put him under, he said Joe wasn't worried about him,he was worried about ME, he told him.."make sure Debbie is alright,if anything happens, take care of her" and smiled. (THATS my Joe). They then operated.They discovered the tumor was MUCH bigger than they thought, it took 4 hands to get it out, and he more than likely wouldn't make it off the table. This amazing Dr.cried, and held me while I cried, & then collapsed.

Joe was in the hosppital for 28 days unconcious. I never left his side,not even to eat,rarely slept, kept notes on everyone & everything done. I slept in a tiny visitors chair,and didn't mind one little bit.

When they finally let him home, he took an experimental chemo at that time, called 5FU, very mild,one 15 min. shot a week, for a year. He was only sick from it, overnight.No memory loss, no hair loss, disorientation..nothing. Just sick overnight, and he was ok until the next shot. After that, he went every yr. for a colonoscopy, then every 3, then 5. He was clear. For 15 years.

But this one...this is bad. When he was diagnosed, he was the second on the planet to get it,mis-typed and treated at what I call "the green mile". They almost killed him with radiation sickness, and chemo overdose (cisplatin). His liver enzymes went from normal on a friday pre-chemo, to through the roof on Monday. The oncologist? Accused him of heavily drinking over the week-end!

They told me "good luck finding a surgeon".So I did. I don't know if I can post the name of the Dr. that specializes in head & neck,with the TORS robot here,but he is world re-known, was referred by an ent that my family Dr. sent Joe to. An amazingly skilled man.A very very caring man.
But admitted, because Joe was mis-typed & treated at the green mile, the radiation may have "melted the tumor cells, and it may spread, or,it may not." He didn't know, because no one, has been diagnosed with this except one other person, in Thailand, in the 1940's.

Joe? Was sent to a lung surgeon in June,by the above Dr. That lung surgon would not treat him. He opennly aditted he never saw a sarcoma, and didn't want to "guess" treatment. That to me, is a very very good Dr...admitting he didn't know. So he sent him to another..a very VERY well known lung surgeon, with ecperience with this.

She sent him to an oncologist for a consult only!

He WANTS, this poison, even though,it drops his bp so very low, his headaches are excruciating,so so cold all the time,cleaning an IV pick every day,such bad memory loss..so pale. HippyGirl..this is what HE wants..not us. He was offered surgery,because these are SO tiny, well 6 0f 7., that they don't show on any x-ray! Only ONE shows, HALF the size of a PEA. She (caring lung surgeon) says it would be a consult only but once we got there, they scared him into this chemo by saying it may "shrink them", or, he may end up having to have surgery anyway.

So, We, my daughter & I, cannot understand WHY of all things, when surgery is a possible anyway, he would do this to himself, to us as far as having to hook him up to IV's, inject saline/ativan/saline/heperin 4 times a day for nausea(drops bp)so he doesn't vomit his esophagus..for 10-12 days.Same thing with 2 lines to clean them every day. Thats 6 hep a day!

He can't eat, for almost 3 weeks, then? It's time for those 4 straight days of a trial,very harsh chemo,and the vicious circle begins again.
They are incompetent, he knows it, (he told them that today)so do we all, yet, this is what he wants to do.Even HE doesn't know why he keeps going back! When surgery is more than likely in the future.

The type of surgery for this is min-i-mal-ly invasive, Dr S* says she would deflate his lung, and literally take it in her hands, and feel, for those nodes not showing in x-rays,"cherry pick",& remove each and every one of them. Drs don't CARE enough to do that anymore. But, she does.

He said no, he wants to keep on with the chemo, even though she flat out told him to refuse it, it was only a consult, and if he took it, only a trial. He has not just a glimmer of hope, but an explosion, if he lets her operate. I believe her, I research every Dr. he has, and shes the best at this.The oncologist? This suppoed "guru"? Shows up no where, I can't even get a phone number from information for him!

Joe,gets moody,nasty to the extreme, forgetful,non stop vomiting, these 4 meds and chemo,attacking his bladder/liver/kidneys..and he wants this? He screams at the doctors, makes stuff up about how rotten we are,and be-lieves it.

Last week? He started to scream at me in from of Dr S*, the lung surgeon.I am not a lying woman. I was just sitting there, listening to her tell him he has so much hope, and he went ba-llistic..on me.I looked at her, she me, and I said "I'll be right back". She nodded (Joe didn't see any of this, he was on a tyrade) and he literally screamed, "THERE SHE GOES BEING A F-ING DRAMA QUEEN AGAIN!!" She knew, this was the chemo, she KNEW, and told him refuse it, but he won't.When she met him, she said "Joe, you're a great guy, you love your family thats obvious, and they love you". This? Was not the Joe she saw before chemo.

I blow everything off. I didn't respond to the made up lies during the tyrade,I said I was going to the bathroom, stood outside the door, and he just kept screaming and lying about me. I slid down the wall, and just covered my eyes.my head. I went back in, he said lets go, Dr. S* was frantic, we didn't get 6 feet out the door, and he acted like it never happened.He still does..

This, is what I don't understand. Why, with the possible surgery & another chemo anyway, would he put himself through this trial? Knowing, it makes him like this? I have video, he refuses to see it, and says "I made it up"?

I'm quickly, losing my mind...and so is my poor daughter....

the reason, I have posted this long, and this much detail is because I am looking please God for support to help me help him, and to see, if any other wife, girlfriend, has had this problem. Or ANYONE, who has made these chemo decisions, and help me understand, why, why would he do such a thing to himself, against, the advice of amazing surgeons?

And, never EVER, trust your loved one to ANYONE, who doesn't respect them, and treat them as a person. Question everything, see charts, demand. Yes, This is your right. Doctors, good ones, have told me so. no one, knows your loved one, better than they, and you. Don't let them become, patient 7431...let them know it's your Dad,Mom,Wife,Husband,ANYONE YOU LOVE..FIGHT FOR THEM WITH ALL OF YOUR SOUL! For they may be to tired, or medicated, to fight alone...

Feisty, my heart truely goes out to you and your daughter. I'm dealing with a different problem with my husband. He is a diabetic in renal failure and does not want treatment. But he is in denial too. He became extremely mean and cruel but the doctor got him to take an anti-depressant and that has helped the anger problem. I'm not suggesting that that would help your husband. I was going to tell you, for your depression; I suffered depression and could not take anti-depressants but what helped me tremendously were the Chicken Soup books. It was amazing how they lifted my spirits and helped me find my way out of the depression. But you have a very serious problem with his threatening your life. Could you go talk to his doctors without him and discuss his behavior and what they might be able to do to help? Other than having a court declare him incompetent, I don't know what else to suggest, other than the police if you are threatened again. And if you feel unsafe, remove yourself immediately from the house and have a safe place to go to, anytime of day or night. Trust your instincts on that, please. It doesn't sound like he is in his right mind and if a doctor is at fault, perhaps a complaint to the medical board might help you get that doctor out of the picture. Don't be in denial too. If he were to hurt or kill you he would be in prison for the duration. So protect yourself. Your daughter too. The doctors need to understand how serious this situation is. Many blessings.

He said no, he wants to keep on with the chemo, even though she flat out told him to refuse it, it was only a consult, and if he took it, only a trial. He has not just a glimmer of hope, but an explosion, if he lets her operate. I believe her, I research every Dr. he has, and shes the best at this.The oncologist? This supposed "guru"? Shows up no where, I can't even get a phone number from information for him!

Call the state medical board if he has a license they know him.

But you need a doctor or counselor for you. Someone to give you advise and guidance in person. How old is your daughter?

Write down this number:

1-800-273-8255

check out:

view link

That is a great website...AZ Sunflower.

Feisty - it has been 29 days - what is happening? How are you doing?