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Cancer can steal so much. (ended up a bit long, sorry)


Nova

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Harry was diagnosed 8 months ago.

During that time, I've watched the cancer not only steal his health, but it seems his soul also.

He was never, in the almost 18 years we've been married, much of a "talker", but it's gotten to the point now, where he has withdrawn so far into himself, that he rarely speaks.

I've had a hard time not taking it personally, and getting my feelings hurt, but I know it's not just me.

The nurses at the hospital asked me if he was always so dis-interested in his treatment and condition. My daughter cried after she tried talking to him - he barely responded. The men he worked with call to invite him to go fishing, or just to talk, to see how he is, and he won't return their calls.

Our 14 year old son, Jacob, decided not to play on the football team this year, in order to spend more time with Harry. Being only 14, and an exceptionally GOOD football player, it touched my heart that he was mature enough to realize what was more important.

I feel sorry for him, because his dad doesn't seem to know he exists most times.

It makes me angry, although I know that must sound mean.

He won't talk to the doctor. I suggested maybe he could get some medication for depression, and he said he was alright...

I miss my husband..... I miss him coming home from work and telling me long stories about what he built that day , and me not having the faintest idea what he was talking about, but acting very interested anyway, because it made him happy!

I miss going to watch our son play football, and Harry getting all excited and saying "That's my boy", when Jacob would score a touchdown.

I miss laughing at him when he couldn't keep the names of my daughter's 3 little boys straight, so he would call them all by the wrong name, and they would giggle and say "Pa, I'm not Anthony, I'm Gabriel"!!

What am I suppose to do??????? I've tried everything... I've tried being extra positive for both of us, I've cried, I've begged him to talk to me, I've gotten angry, which I'm not proud of.

Now I do nothing. Our whole lives have become long hours of "nothingness".

I feel, at times, that it's tearing my heart into a million tiny piece's.

I hate this disease and what it does to people.

Thank you all for being here. Thank you all for trying to help. I know there's not an answer to this problem, but if any of you have had a similar experience, I would appreciate any input you might have. I don't know what to do anymore..... :cry:

Please pray for us.

Thank you,

Nova

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Oh Nova.................my heart just aches for you. You have articulated so vividly what has transpired over these past 8 months and it is heartbreaking. i cannot begin to imagine the silence you must be feeling. The story here goes a bit differently ~ as it was me facing the cancer. But our conversations never ceased. Sometimes I think I shared even too much with Fred as to how I was dealing with 'stuff'. Not talking at all is something I don't get. Everyone deals differently, I know, but this has got to be so very hard on you. Wish thee was something we (LCSC) could do to make the road a little bit easier. Just know that ALWAYS someone is here to listen.

(((Many hugs))),

Kasey

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Cat scan result on the 10th,

could be one of the reasons

now of the silence.

Mike never was a big talker

either and got worst during

the first months of treatments.

Alone in a room he would not even

answer the phone and let it ring

and ring, would not answer the door

is somebody came by..........

He was not depressed, just thinking

and thinking of what we would miss

if...........

or what he could have done wrong

to get lc........

what would happen to me if.....

So had to tell him that we were

together on this new road that

was going where??????? we did not

know but that expressing the way

we were feeling could help, that

I could not take this state of

silence much longer...........

and he opened up and kept talking.

You are not alone that face that

situation the children are there

and they need him as you do.

Maybe others from the forum had to

go through the same situation.

Hugs

Jackie

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Nova,

You words resonate with me in a way that is unusual. I think that you probably said some things that I feel and never put into words or even conscious thought.

It must feels as if Harry has gone to a place that you and your children can't join him at, in spite of your willingness to do so.

Our situation here is a little different, but has many of the same characteristics. I work all day and my husband (now) stays home alone. I work hard to get home by 5:30 in a job that really requires more so that he is not sitting alone for more hours than necessary, but the evenings are so long. It is as if we are orbiting separately around the big black monster that we don't often acknowledge. I go to bed earlier than I have ever gone to bed in my life simply to shorten the evenings. It's as if it takes undue energy to spend each evening pretending that things are ordinary when they are not. I chat, I talk about the news, I try to make him laugh with the antics of our cats - not a lot of response. My son is 24 and in the Army, my daughter is 20 and in college. When they call at night, he now often declines to take the phone from me to talk to them. It's quiet after so many years of both us us working and hustling through the evenings to get dinner, homework completed, and kids to bed.

This is hard and disorienting. The landscape is so strange. I understand how it must be for you, and wish it were easier.

I think it may be especially hard for us as women and as mothers - we want to make things right and happy. It's what we are used to doing, and now we can't. It kind of leaves us standing alone.

All I can say is that I think I understand, and I'm sorry. You'll be in my prayers. (And bless that young son for giving up football for the year - that is a big deal at his age. He must have quite a heart.)

Mary Colleen

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(((Nova)))

My dad was much the same way....he retreated too. I don't know if he was disassociating with the living, in a depression, or grappling with the emotions and uncertainties all in his head....it could have been all three.

I don't have any words of wisdom or words that can really help. I just have thoughts and prayers for you and Harry and your family.

i wanted you to know that I understand...and your post hit my heart.

I think, for us, we had to realize that the "idea" of what and how we thought WE would be in that situation, just didn't apply to my dad...and that he was going to go thru this HIS way, and do the things he needed to do.

(I think a survivors perspective would be really great in this situation)

I've always thought that if I were faced with a serious illness, I'd write letters, make videos, write and talk to everyone and do all those things I'd yet to do in life.....but my dad during treatments.....he was just along for the ride...he didn't have anything to "fix", no regrets, just sadness that all of it was happening, uncertain about the future, just "waiting" just "watching", and just present enough to make it to the next day.

(((hug)))

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My Dear Nova,

My heart hurts so bad for you. I do know how you feel, but we each have our own feelings about wishing, hoping, praying we could somehow make things different. You know what I'm talking about.

It must be especially hard for Jacob to see Dad this way. God has blessed you with an incredibly mature 14 year old and it seems he'll be the one to help you through all this.

I'm sorry Harry is so terribly deep in his depression and if he is not willing to take anything for it, there is nothing you can do.

Please just try and turn this all over to the Lord and let him take care of it.

My thoughts (daily) and prayers are with you.

Love, Laurie

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Nova,

I don’t want to step out of line here or hurt anyone’s feelings (not my intent) but from a cancer patient’s point of view there is nothing anyone can do or say-- It is really up to Harry or anyone in that situation. For whatever reasons he is the one that chooses to shut everyone out, not do anything which is very sad and not fair to you and the kids. No one knows what the future holds so why not wait until one crosses that bridge then worry about it-- why not enjoy the present and make the best of it. If I were you I would express your feelings and tell him how much it is hurting you and the kids. That he needs to do/say things for his sake, yours and the kids. That sitting around, feeling sorry for one’s self and being selfish serves no purpose but to make matters worse. I think he is going to regret it in the long run not taking the opportunity to do things with the family. Nobody deserves cancer, nobody wants cancer and we all know how hard the journey is but it is up to the one who has it to make the best of it. I’ve taken my share of hits but I still realize I have a family, we have to have a life, do things and I owe it to them to find a way to overcome everything, keep trying and not add more stress and ill feelings to the situation. Be more then glad to talk to him (or anyone) anytime if I can be of help if he is willing— I think it really helps to talk to someone who has been there done that. Hope this helps. Prayers for the best

Rich

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Well, I'll be damned. Thanks for bringing this up Nova.

I was having this very same conversation via pm's last night with another member here. I thought I was going crazy. I know Harry has always been a quiet type and Tony is the same way. This is a different "quiet" lately though. Tony has become so withdrawn that he barely speaks anymore. The doctor yesterday took his lack of response to mean he had given up the fight. I've spent/spend 24/7 with him since this began and this is a whole new ballgame for me. I keep trying to pull him out of his shell. He says he's conserving his breath by not talking. He also waves me off when I try to hand the phone to him when our kids call. I get my feelings bruised too, but understand that he doesn't mean to do this. It's just become so lonely. Like a vision of things to come, but without the grief of death. He did smile yesterday, which made my day. I keep thinking he is mad at me, but I continue to do what I can for him to keep him comfortable. I do wonder what is going on in his mind and always ask, "A penny for your thoughts?" God love him.

Apparently this is typical, but what does this mean? I know Tony is going downhill, but I'm afraid that this is not a good sign. Is this how a person begins to separate themselves from those whose lives will go on? I hate to think we might be at that stage and hope like hell I'm wrong, wrong, wrong. I remember reading a book in school by Elizabeth Kubler-Ross "On Death and Dying" and vaguely recall something about this separation. I don't know, I'm floundering though.

I'm sorry for all the above members who are also going through these times. Worse yet is the sorrow I feel for the younger children in this situation. They don't deserve to have their Dad's in this place at this age. This is just not fair. God bless them. I'm crying as I'm writing.

Cancer sucks.

Hugs and love to all,

Welthy

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Wow Nova, this really struck a chord with me also. I just had this conversation with another member last night. My husband was dx almost a year ago. He's had small periods throughout the journey that he has temporarily retreated, to sort things out in his mind, but he's always snapped out of it.

Lately he retreats more and more often. He barely speaks to me the last few weeks. He's been fighting what we think is an infection, so I've been trying to make sure he gets what he needs. Food, drink, a blanket, whatever. Every time I offer something he makes a face at me, or waves me off. I try to engage him in conversation. Nothing. It hurts.

I can't imagine what our men must be going through. And as their wives we just want to HELP, to be able to do SOMETHING! I feel so helpless. I feel like the only thing I can do is offer comfort. But he won't accept it.

I don't know if my approach is the right one, but I try to respect his space, yet continue to reach out. Most of the time I am rejected. But it's worth it for the one time that he does accept something from me. I never want him to think that I am the one shutting HIM out.

I am so sorry that you guys are going through this. But please know that you are not alone. I'll be keeping you both in my thoughts.

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This has been SO HARD to read. When I got to the part where Nova's 14-year-old son gave up football to spend time with his dad... What a wonderful kid.

I like what Rich had to say, also Jackie's description of what worked for her situation. Maybe others will post with their ideas on how things might be turned around.

Though I'm still doing well, I can tell you this -- if I ever started withdrawing from family and friends, I'd catch holy hell from my dear wife no matter how sick I was. Bless her!

Aloha,

Ned

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As a surviver, I can understand where they are coming from. I had a real hard time relinqishing control, independence, fears... It was so hard having a caretaker that was involved in every aspect of my life. I couldn't do anything alone. I had no privacy. I'm not much of a talker to begin with, and as I got sicker, weel, there's not much to say. It's hard to express, but kind of like if you had a problem, you wouldn't want to tell him just yet because you wouldn't want to worry him unnessacary. So you don't say anything right away.

As women, we have a nurturing nature. We want to take care of eveyone. I think it must be harder for men. They spend their whole lives taking care of their wives and children. Now, they are the patient. Not just for a weekend "flu", but for months and months and months. They probably don't see an end in sight, or if they do, it's not the one they want. I think when they start feeling better physically, their mental state will improve tremendously. What can you do? I'm not sure, but maybe you can ask him to do something for you. Something you know he can do. Maybe get the "flu" for a day or two and have him take care of you. He feels like he's lost control of all areas of his life. Let's think of ways to give some of it back. Hugs to all of you, Liz

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I can't thank you all enough.....

I cried when I wrote that post, and I cried reading the responses. (It's been a soggy day for me!)

Having you share your thoughts and experiences has helped me feel better though.

I don't feel so "alone" in this mess.

Thank you also, those of you who are actually dealing with cancer . You can bring to my attention things that Harry might be feeling, that I can't possibly even imagine.

I'd like to keep believing that he'll come around eventually. If he doesn't, then I guess I'll have to learn to deal with it. As long as I'm doing everything I can for him, I guess it will just turn out however it turns out.

I love him SO very much, (Mushy, I know :oops: ), and I would turn the world up-side-down to help him feel better.

Thank you so very much.

God Bless you all, and "Thank you Lord", for letting me stumble across this website!

I can't imagine being in this situation without my LCSC friends.

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Nova,

Your post struck my heart too. Not my Mom right now, but my Dad was that way. I would just go and "be" with him. Watch TV shows that he liked and not really do anything. Sometimes he would reach out and hold my hand...he wasn't much of a "chatter" either but loved to tell stories and those became few and far between. His doctor asked me--several times actually--if he even wanted dialysis and treatment. He had retreated into himself and seemed disinterested...but was fighting like hell despite all that he had lost. We weren't very demonstrative in our affections, but I know that he loved me and was always glad to see me. And he got scared too and would want me to stay with him and just be quiet.

I really feel for you and am sending good thoughts to you and your whole family.

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(((Nova))),

My heart goes out to you and to Harry. I can't imagine being the patient so I can't imagine what Harry is feeling. As a caregiver, I do know how hard it is and what an emotional roller coaster it is. I hope you can somehow tell him that you and the kids love him so much and you need him to talk and share that love. Hoping things get better.

Hugs,

Sue

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Nova,

I'm so sorry. It is a heartbreaking situation, all around.

We didn't have kids at home, but Bill never wanted his kids or any of his family to come and visit. Not until things took a dramatic turn for the worse. The idea of thinking he was seeing people for the last time was too much. I wonder if that is some of what is happening. Those thoughts are just too much to bear for Harry right now, so he retreats to protect himself.

We went through periods of silence too. The hardest would be if I was at work and would call and he wouldn't want to talk at all. I would just imagine him being here alone and get upset. But he used to assure me that it was a choice. He often didn't sleep in bed, even before the cancer made it too uncomfortable to do so. He also assured me that it wasn't because he didn't want to be close to me, it was because he needed that solitude at night. Because that's when the deepest thoughts came. That's when he could cry, pray, sit outside and stare at the night sky, etc. And he needed to do that alone. I didn't like it, but I understood.

My approach was typically how "nyka69' described. Try to respect the need for space. However, I don't think the silence was anything close to what you're experiencing.

As Liz said, he's probably always been used to being the strong one, taking care of you all, and now he can't. I can't imagine what that must feel like, but it must be dreadful. And then there's the feeling of being the subject of everyone's concern. At certain times, that drove Bill nuts. He just wanted to be normal. So in those moments, he would also avoid phone calls from friends and even family sometimes.

I like Liz's idea of asking him to do something for you -- something that he can do, something that he used to do. It was hugely important for Bill to feel useful, and when he didn't, it upset him greatly. That never changed. And perhaps trying to confront it head-on as Rich described, but to try not to be emotional when you do it. And acknowledge, as I'm sure you already do, that you know that you have no idea what he's feeling, emotionally or physically, but that you love him so much and just want to be present with him.

And if he really won't talk or listen, perhaps write him a letter to read when he's on his own.

Hugs and prayers -- I understand those teary days,

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Thank you Teri, and everyone.

There were very good suggestions in everyone's reply's, and I intend on trying them . (I have nothing to lose by doing so!)

I know Harry doesn't feel good, and I can't imagine how scared he must be. I've told him that, and he just loudly stated that "if it was his time to go, he'd go, no matter what". Not the reaction I was expecting, but he at least seemed to wake up for a few seconds... :(

I'm like Katie though ~~ I think I would be telling everyone how much I love them, instead of holding them at arm's length. Then again, we're all different, so I don't know that there's a "normal" for this situation....

This will sound awful, but I was so happy to read that Harry isn't the only one who has reacted like this...(Sort of like the happy we felt when Laurie's husband found out he had cataracts instead of a brain met).(We can find odd things to be "happy" about here :( ) I know you understand what I mean.

Another day is here, brand new and fresh, so we'll see what it holds.

:?:

Thank you all,

Have a VERY good day. Please know that I keep you all in my thoughts and prayers every day.

Love,

Nova

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Nova,

I've always tried to keep in mind that this is his party, not mine. It's whatever he wants, not what I want. We can't control their actions, but we can control our responses.

The real complication for you is some of your kids are still young, so you're torn between the role of loving spouse and mother lion with cubs. Sometimes it's a real balancing act to honor his wishes and feelings but still protect your kids. My kids are adults. The boys don't push the issue, but my daughter does. Tony is like what Teri described Bill doing. He doesn't want anyone over to the house. I've laid down the law to Tony that he's going to have to accept that his daughter wants to see him and there will be no discussion about that.

I like a lot of the above ideas from other members and am glad you'll give them a try. Hoping for some improvement for the situation.

Tony and I have been at this party for awhile, so I think we're in a little bit different place. The key is that these guys are still fighting and haven't given up. That's a good thing!

With much understanding and many hugs,

Welthy

(Of course I'm writing this in one of my more lucid moments where I'm not tearing my hair out! :shock: )

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You're so right ~~ It's their "party", to do with what they wish.

You're also right in the fact that I'm torn between wanting to help Harry as much as I can, while protecting the feelings of my child.

I think I'm kind of tired of trying to fix it.. :shock: ...

Thanks,

Nova

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Nova--I saw the same thing happen to my sister-in-law's father last fall. After his diagnosis he just shut everyone and everything out. She and I went over to his house on Thanksgiving so she could beg him to come to Thanksgiving dinner. He wouldn't(couldn't) and it broke her heart.

Not long after that they took him off most of his medication and he rallied. On Christmas morning he came over to watch his grandchildren open their presents and was talkative and more like his old self. It was a welcome respite for everyone. He left us a couple of months later, but I know my sister-in-law is grateful that she had her father back for Christmas.

I'll be praying for you and Harry.

Susan

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Nova,

I never really come in this forum but ventured in today and feel the need to comment on this post.

I always thought that I would be one of those people to get closer to those I loved, tell everyone what they meant to me, etc if I found out that I had cancer or some other life threatening disease. I fantasized about writing books to my grandchildren, taking trips with my kids, and so on. The fact of the matter is that, for me, that wasn't the route it all went.

After I had my surgery and it was confirmed that I had cancer, I started withdrawing from my daughter and my grandchildren. My son is 8 so I didn't have much choice but to be here for him at the time, but I think emotionally, I withdrew some from him too. None of this was for me - because I was sad or any other reason- I had always said that if I was diagnosed with cancer and had no one, I wouldn't really care much if I lived or died. My pain, my withdrawal was for them. If I was going to die, I felt that I needed to start leaving them now, so that they could start to manage on their own, because that was the way it was going to be after I was gone. I didn't want to grow even closer, I didn't want to spend more time with them - why - so it would hurt them even more when I was gone? I wanted any memories they would have after I was gone to be distant ones, not fresh and as soon as I heard that I had cancer I started detaching. It was my job to protect my children and the very least I could do is make my own death less painful for them, and to make myself the least missed I could. I can only imagine how I would have felt if the cancer continued to grow.

I know this probably doesn't make sense to some people but that's okay, because dealing with cancer puts you in a world that makes no sense. I am still not as close to my daughter as I was before cancer, my detachment continues in some form, just in case it comes back. Cancer carries some huge psychological tolls, and all of us are victims in some way.

Nova, I wish you the best. I wanted to give you another possibility of where your husband may be at, but my heart goes out to you and your family, no matter what the case.

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Hi Debi,

Thank you for writing and sharing your feelings. I really appreciate it.

Maybe Harry is feeling like you use to ...???

Thank you for sharing your story. I still can't quite grasp the need to push people away, but I see now that you felt that you were protecting them.

Maybe that's it with Harry too. I don't know. :(

Take care, and have a good day!

Nova

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"Debi" I always thought that I would be one of those people to get closer to those I loved...if I found out that I had cancer or some other life threatening disease. The fact of the matter is that, for me, that wasn't the route it all went...

Debi, I'm really glad you added your perspective to this discussion. It gives me more to consider, preparing for if (optimistically) / when (realistically) I begin my own downhill slide. I'm wondering if this explanation for your withdrawal is something you realized at the time, or something you didn't figure out until later?

Aloha,

Ned

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Nova,

I know there was a point in time when Gerald just kept to himself. We had rushed him into the hospital and he was admitted - this was the point where he had to get put on the oxygen 24/7 and the pain was so strong. He huddled in the hospital bed - almost in a fetal position - wouldn't talk hardly at all, if he wasn't really sleeping - he faked it....even if there was company - which there was lots of. It was like he had given up. My sister in law and I rode with him in the ambulance every day to Sunnybrook for his palliative radiation (he wasn't to know that lest he give up hope). I not only believe - but I know - that this was when he came to terms in his heart and soul with what was happening to himself. He looked scared shitless but he wouldn't tell anyone what was going on in his head. After about 5 days and me finally freaking out in the ambulance ride - he decided to get up out of the hospital - and without revealing to us - live what he knew he had left. He had to get out of the hospital - no if ands or buts. We never did talk about no hope nor about him dying until about 2 weeks prior - and that was just for me to ask him if he was ok if something happened - to which he replied yes - but he was just worried about me and the kids. I told him we would miss him like crazy but that we would be ok. Maybe Harry is just coming to terms in his own heart and soul with what could happen to him. Ger and I went to a spiritual healer and that helped him greatly. If you could find one of them or a Reiki person and Harry was open to it - it may help. I pray that Harry beats this disease and I am not trying to depress you - I am just trying to let you know my experience.

Heather

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