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Keeping Positive?

newbride
Posts: 142
Joined: Jul 2009

Ok...so here's the latest in my saga.....

I come home today and my husband tells me he has written up all instructions as to how he wants his funeral, where he wants to be laid out and where he wants to be buried!!!!

I asked him if he feels like something has changed - does he feel a difference in his nose or mouth, etc? He said no but he also feels that because this is so rare and the doctors never saw it before that they were grasping at straws hoping the radiation/chemo will work but he knows that he is not lucky enough to beat something that stumps the doctors.

I told him I think he needs to talk to someone and maybe a group session would be better rather than one on one....he told me he does not need to talk or get counseling because there is nothing to say and nothing to hear and it doesn't matter if there are cancer survivors since no one has had HIS cancer and there are no survivors of his cancer -- so I told him "Then Be the FIRST one"

I'm so afraid he is giving up -- I said to him that I plan on fighting this and not giving up and he said "so am I" but it sure doesnt' sound that way to me!!

Dazey
Posts: 86
Joined: Sep 2009

This is a difficult time for both of you. I would suggest speaking with the doctor -he might be able to suggest medication to help. Cancer is difficult to deal with even with the most positive of attitudes, but if there is any underlying depression, it makes it harder. Support groups can be great "supports", but sometimes, they are not supportive and do not meet the individual needs, especially if there are other things going on. Speak with the doctor about what you are seeing. I wish you well. I have walked your path as caregiver to my husband, and now I walk the same path he did. Dazey

train-nut
Posts: 101
Joined: Jun 2008

Newbride,

Please try not to be too alarmed by your husband's thoughts and actions. Reminds me of myself. Typical male reaction. Many of us guys want to "take care of things" no matter what they are. Might be giving him a sense of control eventhough he's in a whirlwind. He is probably thinking of you and is trying to carry more of the burden of all of this. There are many survivors of rare and/or occult primaries. Most of us had treatment plans that included additional chemo and radiation to kill unknown stray cells which may have been lurking around somewhere...not much different from your husband's situation. Your a good wife, he's trying to be a good husband. Rich

Hondo's picture
Hondo
Posts: 5932
Joined: Apr 2009

Depressions is one of the many side affects, pray and talk him through it, just hold him and remind him that he is needed and loved. When I was going through chemo & radiation the second time I really lost it. I was so depressed, all my children left home because I was too miserable to live with. All I had was God and my wife by my side, and I remember her standing by my side and just holding me and asking God to give me strength. I made it because she was the one there for me, we have been married 35 years now and I love her more now then ever.

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thegirlfriend
Posts: 147
Joined: Sep 2009

What form does depression take? How many different forms are there? How much is one expected to tolerate before the cancer patient is considered out of line or just unacceptable? How much patience is the spouse/significant other/etc supposed to display before saying something about the abusive attitude directed at them?

My boyfriend has always been a fighter, war vet, career cop, retired now. im his first regular partner in his life in a decade. both of us divorced. 7 months into it, he is diagnosed with cancer of the mouth. received good news after only a couple of radiation, they see the tumor has shrunk.

Since treatment of radiation and chemo started last week, he has steadily become meaner and uglier. Not the guy I know. I am perfectly understanding and knowledgable to know that he is going to have his moments and days. we have a long distance relationship (known each other for 20 years but just started seeing each other). Im 4 1/2 hours away from him. this week, his phone calls have lessened, never responds with feedback on any subj in email but does forward an occasional joke email sent to him, txt messages are almost gone now. Doesnt share too much what his day is like, doesnt feel like telling me any details about what treatments are like, what they do, not much of what drs are saying, because its too much detail and doesnt feel like going thru the whole thing. Has already developed the
awful dry mouth, (sponge in throat feeling), very tired.
I think the world of this man, i think he thinks i want to do everything for him because Id like to see him and visit him. Its been 3 weeks since seeing him. Keeps telling me I cant help.
This is a man that can take care of himself, if he has a protocal to follow, he follows it, no matter what it is. He is very responsible that way. So I dont need to make sure he is doing this or that. He will call me on it if I do that.
He has waited for a great woman to come his way for many years, one that thinks the world of him, genuinely cares for him, and this happens.
He wouldnt let me go with him his first day, which included implanting his port, then later in the day radiation. He didnt want me seeing him in a vulnerable way, have to worry about me worrying etc. So I stayed home. Didnt like it, but stayed. He was very good about keeping in contact with me that day. But as the close of this past week arrived, he is starting to feel side effects and its very ugly. I know it will get worse.
No matter what comes out of my mouth, its the wrong thing, a stupid thing, a useless thing to say. Nothing helps. I cant be patient, i cant get impatient, i cant lighten the mood, i cant get angry because there is always something wrong with it. And this is going to get worse.

Im at such a loss.......I dont want to lose contact with him, but I dont want to talk to that ugliness. He is not the kind of person that shares his stuff very easily. He just wants to be left alone to fight this fight. No fussing over him. Of course Im supposed to be the closest one to him, or the one he is most comfortable being impatient and mean to. As far as I know he isnt acting nearly as bad to anyone else.

Isnt family fighting a harder fight, dealing with its effects on your loved one, as well as praying and hoping they can survive it, standing by and just watching what it does to them feeling completely helpless?

this is just the beginning, 5 more scheduled weeks, 2-3 extra weeks that he stays "cooking",
he told me to come but obviously to appease me, and thats something I guess, but I cant be there if Im just going to be in his way. I thought it would help to have another person to talk anything with, instead of medical people all day, and then in his room at the Cancer society lodge he is staying at, he always has to stay busy, and this is not helping since he just sits and twiddles his thumbs alot. that intensifies everything.

Im only posting because of one line in Hondo's post.
"I was so depressed, all my children left home because I was too miserable to live with".
My boyfriend does have God in his life, I hope thats enough. Im clearly doing nothing for him.

Thegirlfriend

Hondo's picture
Hondo
Posts: 5932
Joined: Apr 2009

Welcome to the right place, I feel your pain because I know where both you and your boyfriend are right now. It is hard but there is not much you can do for him except to be there for him when he calls. Cancer is not easy to go through and the treatment makes many changes to our bodies that we are not aware of. Another thing is that we sometimes get full of anger saying why me why am I going through this.

I was once sitting in the Oncologist office waiting for them to call me for my next treatment, I was having one of those bad days, when in came a man and his wife and sat down only a few chairs from me. The look on the guys face told a story of someone is horrible pain, when he went in for his treatment I ask his wife how he was doing. The story she told me made me realize how lucky I was and how little I had to complain about.

Be there for him, he will not call because it hurts to talk, it hurts to eat, it hurts to do anything and more then likely his face is burned so he feels like no one love him. Let him vent his anger if that is what he needs to do, just be there and assure him that you still love him.

The time will come when the radiation will stop and his body will heal. I wish that God was in his life it would make it easier for him, but what we both can do it to pray for him everyday, my strength in fighting Cancer all 3 times has been from my faith in God a lone and the woman he gave to stand by my side.

You will find a lot of good people to talk to here; my e-mail is on my post if you need my wife will be happy to talk to you. God bless

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

Im sorry, it was very late last night when I posted. I couldnt sleep. I hope I made sense.

My boyfriend is not used to having a good woman in his life, so although he knows how much I care for him, he is not very comfortable with me telling him the love stuff. But he knows that I care deeply and he means the world to me. He indeed has God in his life. He has a very deep relationship with God, and does a great deal with his church. After more words yesterday, he hasnt really spoken to me. It hurts, but a girlfriend called me to check on me, and i think i will just go spend time with her so as not to be alone to think too much. I told him in a txt that he has never spoken so foul to me before, and i didnt deserve it, but also told him that I hope he was in church, and that i was going to keep working on not being so intense myself, and if he needs me for anything, im just a phone call away. told him if he wants me to come visit, he needs only to ask and i will be there. but only if he wants that. Im a very loving person and he knows that, so it pains me to see him in such agony, emotionally.
So far its the dry mouth that is aggravating him the most and he is very tired. Other than that, he is backing off from me in the last couple of days, so im not too sure of much else.
i have twice the agony to deal with because i care for him so much, plus he is so far away. i guess its good so he doesnt have to have me in his face all the time right? probably better for me too? ;)
maybe we both will be watchinig the Dolphin game at the same time later. Maybe he will call.

thanks for your response.....I truly appreciate it. I will do my best to "suck it up" better than Ive been doing. The board helped me with other information as well, so Im glad I found it.

Thanks again........

newbride
Posts: 142
Joined: Jul 2009

Thank you for your insight and support. I "wish" I could hold him but whenever I try to touch him he pulls away from me and says it hurts to be touched. There's just so much time I can sit next to some one and be totally ignored.

And now it gets better -- so far I have given him a "free pass" so to speak and have not complained about one thing that bothers me but I lost it Friday night.

I came home from work to find a listing of pricing for a funeral home, casket, grave, church etc. Ok....had it all been in his handwriting maube I would have been fine BUT it was all in his EX WIFE's handwriting!!! HELLO.

So of course I throw it at him and go into a rage. He sits here looking at me like what is wrong with you - are you finished yet. WHen I finally ask him what the f he was thinking he says "Well you don't want to face he fact that I am dying so I asked her to get all the information" I responded that I never said that at all and when he discussed it the night before I told him to let's at least wait until the results of the CT on Tuesday and if he don't get good news then we will discuss it.

He told me that he asked her because first I would know how to plan a Catholic funeral (I'm jewish) -- ok guess I am so dumb that I don't know how to ask questions, etc. and 2 because I'll be a basket case when he dies and since she could care less about him he figured she can handle it better. HELLO I'M YOUR WIFE -- OK OF ONLY FOUR MONTHS WHICH MAKES IT HURT THAT MUCH MORE.

I told him it's no even so much that he asked her but that it was all done BEHIND my back. It's not like he said "Look, you don't want to discuss this now so I'm going to call ex-wife and ask her to make some phone calls"

And what pisses me off more is that when he was first diagnosed she brought him to a nutritionist, etc again without me being involved. We had this discussion previously -- I told him how it bothered me and I even had a 2 hour conversation with her where she said she thought I knew about the nutritionist because he told her that he had discussed it with me first. So I told her that he didn't.

So it irks me more that she didn't drop me an email or soemthing and say "look he asked me to make these phone calls and I just wanted to make sure you were aware of it"

So the church they picked is HER church (he never has gone to church) so of course since it's HER church everyone will be treating HER like the wife. UGH.....

Well all I can say is I hope this CT scan on Tuesday comes back with GOOD news and he is WRONG and he is NOT dying.

Hondo's picture
Hondo
Posts: 5932
Joined: Apr 2009

Glad to hear you are of Jewish background that makes it even easier for God to hear your prayers. Pray to God and tell him everything, make your husband a matter of prayers before God; tell God all the problems in your life and committee your life back to him, remember the promises of God to all of Abrahams seed.

Then start trying to be different, no cursing no anger when you feel like anger go somewhere and pray.

I too will keep you in prayer. I will be waiting to hear the news Tuesday

God bless

Bonj
Posts: 17
Joined: Aug 2009

Newbride,

So as I read your post it seems that you have a lot of different things to deal with.

Regarding your husband - I think it's normal for him to be going through what he is going through. Let him work it out of his system, make the arrangements and be done with it. Then you can work on him to start fighting the good fight, not fighting with you about arrangements.

Second - is the ex-wife. Does he have children with her and that is why she is involved? Not that it makes anything that is occurring right or wrong, but you need to step up and take control of that situation, and if it means you help him with arrangements, you do so. He shouldn't be doing these things behind your back, but perhaps he's not coming to you because he knows the reaction that he will receive from you.

He can't quit just yet, and by saying that he has a rare cancer doesn't mean he only has X amount of days left. My husbands cancer is similar in location to your husband (if memory serves me correct) and he's been kicking it for 4 years now. So he may not be cured, but he's living! Living with Cancer, not Dying from Cancer. And when he was first diagnosed one doctor we spoke to said "It's a very bad cancer, and you probably only have 9 months." And now we know he was wrong!

As a caretaker you sometimes have to have those blow ups/breakdowns/whatever. But you can still be the one to tell your husband that he needs to pick himself up by his bootstraps and keep on going. And there is nothing wrong with seeking therapy for you. If he won't go just yet, there is nothing stopping you from seeking a therapist, or a group to talk to. It makes a difference to speak to people who understand or who are going through something very similar.

Best of Luck to you!

newbride
Posts: 142
Joined: Jul 2009

Bonj

Yes, he has kids so that's his excuse for having her be involved - his other excuse is that I'm Jewish and won't know how to plan a catholic funeral. Like I'm too dumb to figure it out. No he doesn't know what my reaction would be because he never asked me -- he went right to her!! When I mentioned now to him that I don't want the funeral at St Mary's because it's HER church and it represents THEIR life -- his response was that it's HIS CHILDREN'S Church. When I mentioned about her getting prices at a Catholic Cemetary rather than a non-demonimational cemetary his response is that he wants to be buried a Catholic Cemetary, even though I told him that it would be nice for him to consider the fact that that means when I pass I would not be buried with him because I won't be buried in a Catholic Cemetary. When I said it's interesting that three years ago when we talked about death and dying he said he wanted to be creamated and now all of a sudden he wants to be buried he looked at me and said "Well that's when I thought I was dying as an old man" and I said "Well there's still a chance of that as I have not heard a terminal diagnosis yet." I told him that since he is going for a CT scan on Tuesday and we're suppose to have the results on Thursday we will discuss this all after the results -- he told me there might not be time at that point.

I am really trying hard NOT to rip into him -- but at this point I don't know what to do.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hi there,

It would feel really good to "rip" into him but it wouldn't be the right thing and I'm sure you already know that. It's so hard to be the better person and this is such a long road. My "ex" was jewish and I am Catholic so I know that struggle. I am still very close to my jewish in laws and nephews and I respect their faith and they respect mine. Being sick is not an excuse to be insensitive and your husband is not respecting your faith and I am so sorry for you. I cannot imagine how hard this is for you. I don't have an answer for you but I am thinking about you and your struggles each day. Just so you know, there is people out here who care.

Donna

Bonj
Posts: 17
Joined: Aug 2009

That's what you do. Wait until the results from the CT scan come in and you take it from there. He may be right, and he may certainly be wrong in assuming that he has no time left. I learned that some battles weren't really worth fighting until you had fact to back it up. No use in wasting the energy.

newbride
Posts: 142
Joined: Jul 2009

Ok....so I humored myself today and on my way from work to pick him up for the ct scan I stopped at the funeral home that I would pick and I sat down and talked with them, etc - ok so I am feeling better now because I have a better understanding of everything and how it all works. I am still optimistic although guarded in getting my hopes up. We are meeting with the doctors on Thursday to review the CT scan and see what next steps are. Also, on the ride home from the ct scan we had a long pleasant conversation and I listened to him about the funeral plans, etc. Although he thinks this has not crossed my mind, I showed him that it did and I had an interest in listening. I also told him that I had thoughts about buring his dad's ashes along with him so they will always be together (he was his dad's caregiver last year - I almost feel like I am being paid back for all the times he told me I had no clue what it was like taking care of his dad). His dad actually passed away in March while my husband was still in the hospital recovering from his surgery. He understands (or at least gave in and said he did) why I was so upset about the ex. And I understand better why he wants the church and catholic cemetary.

There's line from one of my favorite movies that goes "I'd rather have 30 minutes of wonderful than a lifetime of nothing special" -- I'm just really hoping that my 30 minutes aren't up!!

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Newbride,

I hope you are right and you have A LOT more than 30 minutes and I hope you and your husband can look back on this one day and say WOW, we survived it. Good Luck

newbride
Posts: 142
Joined: Jul 2009

I wish we had good news - the treatments did not work AT ALL!! UGH they doctors are all stumped.

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