Can't Cope Anymore!

lily33

I am a 33 year old caregiver to my husband who has stage IV kidney cancer. We have 3 small children and have been married 11 years. My husband's first surgery to remove his tumor and kidney was over 5 years ago. Since then we have endured several surgeries and chemo therapies. Currently he is taking Nexavar an doesn't seem to have many side effects.

I am having a very difficult time dealing with our marital situation as of late. He is not the man I married as I am not the woman he married. Cancer has changed us both. Everyday it seems we grow emotionally further and further apart. We have little verbal or physical contact and it is really stressing me out. My other issue is that I've been dealing with nonstop cancer issues for 5 solid years while raising 3 kids on my own. I am exhausted and burned out. I really feel battered down and have little strength to move forward the way our life is right now.

I have many resources in place to cope (therapy, friends, some time for myself, anti-depressants, fellow caregivers). However, after 5 years I am feeling confused and alone. I know this is harsh, but I never would have married my husband if he was the man he is now. He refuses to uses therapy or any other coping skills to express his anger or fear. He denies facing the fact that his cancer is terminal or that our lives and marriage has changed. We are living in 2 different worlds and he refuses to see that. I have loved him forever and don't want him to die. Right now though I feel like I'm in this never ending purgatory between life and death.

He still works, but lives on an "island" by himself. Meanwhile I am alone, still caring for him in every way and raising the kids. It's like living with a fully functioning shell of my husband. After 5 years I'm broken down and need to feel some sort of emotional happiness. I feel like a widower even though I'm not. Drugs could keep his inoperable tumors stable for the next couple years which would be a miracle. I just don't know if I can keep on living this way. I want to be close and cherish the time we have left and he refuses to acknowledge the severity of the situation. I'm very honest with my feelings yet he refuses or is incapable of seeing me. I will never abandon taking care of him-as I've told him. However, after 5 years I can't suppress my physical and emotional needs anymore. I can't satisfy my needs while existing in this "world" he's created. Help!

soccerfreaks

Stages of grief
I am not sure I have read a more honest, a more poignant, a more heart-rending post in here for a long time, if ever. Your grief and anger and anguish weep from the writing.

You have my sympathy, you do.

To be honest, upon completion of your post I felt completely helpless to respond. What does one say to another who has already anticipated every possible solution, who has a support system in place, who understands the need for time away from the situation, who is cognizant of the possible beneficial effects of medications and therapy, and who is still in this quagmire of frustration and futility?

I could think of nothing, Lily. But I did go and do a bit of research again about grief, and was struck by this, the depression stage, as described in one commonly accepted 'model' of grief:

"After denial, anger and bargaining, the inevitability of the news eventually (and not before time) sinks in and the person reluctantly accepts that it is going to happen. From the animation of anger and bargaining, they slump into a slough of despond. In this deep depression, they see only a horrible end with nothing beyond it. In turning in towards themselves, they turn away from any solution and any help that others can give them."

Sound familiar, Lily?

It doesn't make your situation any better to know this (in the event you did not already know it), but what I found most interesting, first, was that this stage is not immediate, but a much later stage, one that comes long after shock, denial and anger.

The hope, for you, comes from the supposition that the depression (not clinical, by the way, as a rule) WILL be replaced by testing and acceptance, as described here, in part:

"Even in the pit of depressive despair, reality eventually starts to bite and the person realizes that they cannot stay in that deep, dark hole forever. They thus start looking for realistic things that they can do. These may be taken on as 'experiments' to see if doing these things help the situation in any way. As this activity starts to work, at least in some ways, it is found to be preferred to the depression and so the person crawls out of that dark hole.

This escape is often done with the support of friends, family and professionals who specialize in helping people in whatever situation this is."

This, Lily, is a form of hope, hope that he will indeed climb out of the pit he is in, and hope that when he does, you will have been able to manage to cope and understand for long enough to be there when he seeks your love and care once again.

You have said, with some apparent determination, that you will not abandon him.

I think that is a wise and noble determination on your part.

Hang in there. There may be some light at the end of this tunnel after all, given time, and it will not be the proverbial train .

My best wishes to you and your family.

I with that I could help.

Take care,

Joe

donnare

Wish I could help
Hi Lily,

I was so touched by your post that I had to reach out to you. I have no idea what I could say that might help. I just wanted you to know that I am so sorry for all you are going through. Joe's post to you was wise and very eloquent, and hopefully helps in some way. You are in my thoughts and prayers Lily.

Wishing you peace in your heart,
Donna

Bobshope

Trying to cope
Hi Lily:

I have only been a caregiver for 3 years and I know your frustration all to well. I told my wife the other day that the cancer does not just kill the body it destroys the connections you once had to the person you considered the love of your life. My wife has stage IV breast cancer and is currently going through her second chemo treatment. I’ve been married to my wife for 28 years and have known her for 46. I am going to consoling as I had reached the end of a depressive dive and I feared not being able to come out of it. Naturally they put me on a anti depressant (Celexa) and had me in counseling sessions immediately. I have to admit the pill and consoling has helped me to be calmer. The doctor did tell me I am going through the grieving process, not for my wife dying but for our relationship dying. I too miss the emotional and physical side of our relationship. I feel I am doing everything with little or no effort by her to be close in anyway. We have discussed this situation and I had told her that even if she did beat the cancer I felt our married may not recover. I guess it isn't so much that she is sick but her way on making me feel unloved and making no effort to help. I tell you these things to let you know you not alone in your feelings. The only one that can make the decision to leave is you. You are human and need to loved and cared for also.
The only advice I can give you is to go out and meet new people, to feel alive again. I understand you have your friends and group for support but you need someone who is not close to your situation and makes you feel cared for yourself not just because your husband has cancer. Be strong and don't be ashamed of your feeling and needs. Peace be with you.

Bobshope

sally72

soccerfreaks said:

Stages of grief
I am not sure I have read a more honest, a more poignant, a more heart-rending post in here for a long time, if ever. Your grief and anger and anguish weep from the writing.

You have my sympathy, you do.

To be honest, upon completion of your post I felt completely helpless to respond. What does one say to another who has already anticipated every possible solution, who has a support system in place, who understands the need for time away from the situation, who is cognizant of the possible beneficial effects of medications and therapy, and who is still in this quagmire of frustration and futility?

I could think of nothing, Lily. But I did go and do a bit of research again about grief, and was struck by this, the depression stage, as described in one commonly accepted 'model' of grief:

"After denial, anger and bargaining, the inevitability of the news eventually (and not before time) sinks in and the person reluctantly accepts that it is going to happen. From the animation of anger and bargaining, they slump into a slough of despond. In this deep depression, they see only a horrible end with nothing beyond it. In turning in towards themselves, they turn away from any solution and any help that others can give them."

Sound familiar, Lily?

It doesn't make your situation any better to know this (in the event you did not already know it), but what I found most interesting, first, was that this stage is not immediate, but a much later stage, one that comes long after shock, denial and anger.

The hope, for you, comes from the supposition that the depression (not clinical, by the way, as a rule) WILL be replaced by testing and acceptance, as described here, in part:

"Even in the pit of depressive despair, reality eventually starts to bite and the person realizes that they cannot stay in that deep, dark hole forever. They thus start looking for realistic things that they can do. These may be taken on as 'experiments' to see if doing these things help the situation in any way. As this activity starts to work, at least in some ways, it is found to be preferred to the depression and so the person crawls out of that dark hole.

This escape is often done with the support of friends, family and professionals who specialize in helping people in whatever situation this is."

This, Lily, is a form of hope, hope that he will indeed climb out of the pit he is in, and hope that when he does, you will have been able to manage to cope and understand for long enough to be there when he seeks your love and care once again.

You have said, with some apparent determination, that you will not abandon him.

I think that is a wise and noble determination on your part.

Hang in there. There may be some light at the end of this tunnel after all, given time, and it will not be the proverbial train .

My best wishes to you and your family.

I with that I could help.

Take care,

Joe

such good insight ... thank
such good insight ... thank you . my husband is considererd short time and we have been able to allow the stages to come and go ... right now we are at the acceping he's got short time . trying to help him i'm includeing him in on my plans after he's gone and he finds it a relief

sally72

you mention anger and fear
you mention anger and fear --- there is also guilt and feeling like he's done something and his cancer is hurting his family who he loves . guilt is also powerful and hard to recognize ... might it be he's trying to shield you from future pain ..maby by useing denial he's seeking a way to make things right .

soccerfreaks

Bobshope said:

Trying to cope
Hi Lily:

I have only been a caregiver for 3 years and I know your frustration all to well. I told my wife the other day that the cancer does not just kill the body it destroys the connections you once had to the person you considered the love of your life. My wife has stage IV breast cancer and is currently going through her second chemo treatment. I’ve been married to my wife for 28 years and have known her for 46. I am going to consoling as I had reached the end of a depressive dive and I feared not being able to come out of it. Naturally they put me on a anti depressant (Celexa) and had me in counseling sessions immediately. I have to admit the pill and consoling has helped me to be calmer. The doctor did tell me I am going through the grieving process, not for my wife dying but for our relationship dying. I too miss the emotional and physical side of our relationship. I feel I am doing everything with little or no effort by her to be close in anyway. We have discussed this situation and I had told her that even if she did beat the cancer I felt our married may not recover. I guess it isn't so much that she is sick but her way on making me feel unloved and making no effort to help. I tell you these things to let you know you not alone in your feelings. The only one that can make the decision to leave is you. You are human and need to loved and cared for also.
The only advice I can give you is to go out and meet new people, to feel alive again. I understand you have your friends and group for support but you need someone who is not close to your situation and makes you feel cared for yourself not just because your husband has cancer. Be strong and don't be ashamed of your feeling and needs. Peace be with you.

Bobshope

wise and noble determination
While these decisions are by nature very personal and very agonizing, I explicitly included the word 'wise' in describing my own interpretation of lily's determination to stay, for at least a couple of reasons.

The first is rather obvious: she is having a very hard time dealing with this relationship which is not a relationship. But there is every indication that things may change (according to the professionals) and that hub will come around.

The second and much more critical aspect of this decision has to do with the children. What is the lifelong impact upon them if they see mom leaving their dad when he is at his absolute nadir physically, psychologically, emotionally?

Just a thought.

Take care,

Joe

lily33

sally72 said:

you mention anger and fear
you mention anger and fear --- there is also guilt and feeling like he's done something and his cancer is hurting his family who he loves . guilt is also powerful and hard to recognize ... might it be he's trying to shield you from future pain ..maby by useing denial he's seeking a way to make things right .

Thank You
I just want to thank all of you for your kind and supportive words. Everyday I wage this internal battle over my life with my husband. It's difficult to talk about this because everyone in my life sees me as "so strong" even though I feel tremendous guilt over being so unhappy. It is a relief just to express my fears and thoughts in a place where others can relate with compassion and understanding.

Soccerfreaks-thank you for caring enough to look into the aspects of grief. Being in a dark hole is exactly how I feel. I have tried for so long to keep some sort of connection with my husband that I had given up hope. I still don't believe we will ever fully recover, but your words do give me hope that time maybe allow something to be salvaged.

Bobshope-I can relate to almost all of your words and emotions. I too mourn the loss of my previous relationship with my husband. It's very difficult to have the person you've loved for so long right before your eyes, but everything you fell in love with gone. I struggle with how to exist in our current relationship...I will always take care of him and love him...but many times I see us as one friend caring for another. My husband has always been my best friend, but I grieve that he hasn't been a husband to me for many years. At this point I don't know how to take care of him while keeping my heart and emotional well being in tact.

As for the impact on my kids...it has been tremendous in some ways and not in others. They tread water very lightly because they are never sure if they are going to get the "nice or the mean daddy"-their words not mine. My youngest 2 kids have never had a life without cancer, stress, and emotional uncertainty. To them, life is medication, hospitals, mom being gone for Dr. appointments, and daddy being sick. The fact they don't know a carefree childhood pains me everyday. I will never stop taking care of their father...but I also want to show them an example of a woman who deserves and demands respect and love. It is this battle that continues.

StrLitNite

lily33 said:

Thank You
I just want to thank all of you for your kind and supportive words. Everyday I wage this internal battle over my life with my husband. It's difficult to talk about this because everyone in my life sees me as "so strong" even though I feel tremendous guilt over being so unhappy. It is a relief just to express my fears and thoughts in a place where others can relate with compassion and understanding.

Soccerfreaks-thank you for caring enough to look into the aspects of grief. Being in a dark hole is exactly how I feel. I have tried for so long to keep some sort of connection with my husband that I had given up hope. I still don't believe we will ever fully recover, but your words do give me hope that time maybe allow something to be salvaged.

Bobshope-I can relate to almost all of your words and emotions. I too mourn the loss of my previous relationship with my husband. It's very difficult to have the person you've loved for so long right before your eyes, but everything you fell in love with gone. I struggle with how to exist in our current relationship...I will always take care of him and love him...but many times I see us as one friend caring for another. My husband has always been my best friend, but I grieve that he hasn't been a husband to me for many years. At this point I don't know how to take care of him while keeping my heart and emotional well being in tact.

As for the impact on my kids...it has been tremendous in some ways and not in others. They tread water very lightly because they are never sure if they are going to get the "nice or the mean daddy"-their words not mine. My youngest 2 kids have never had a life without cancer, stress, and emotional uncertainty. To them, life is medication, hospitals, mom being gone for Dr. appointments, and daddy being sick. The fact they don't know a carefree childhood pains me everyday. I will never stop taking care of their father...but I also want to show them an example of a woman who deserves and demands respect and love. It is this battle that continues.

I knew I wasn't alone in any
I knew I wasn't alone in any of this but to actually hear someone feeling the same way I do is kind of a relief. I know it sounds horrible and i was beginning to feel like a monster feeling this way. I have only been doing it a year but I am beyond burnt out. My husband was diagnosed with stage iv lung cancer a year ago this month, he is 53 and I am 38. He has been through IV chemo treatments and it has metastasized through out the year. It was in the brain and lung from the beginning and has moved onto the right adrenal gland and the stomach. At this point he is on tarceva, which as the dr. put it, would be he last option. I take care of him, take care of our kids, our house and work fulltime through it all. I am the only one in the household that can drive and it seems like there isn't a day that I am not driving some where for someone. The kids do help around the house, my son will be 17 next month but he's a little harder to push for help, my daughter 15, tries her best to do what she can but I limit things I ask her to do for I know it stresses her too and they are to young to be stressed out. We barely talk like we used to, we have been together almost 19yrs and things just drastically changed with all this. I want to say i am frustrated, but that really isn't the word, but along the same lines. Not with my husband thats forsure just with the disease. We have had conversations regarding what is happening but nothing to deep for he has his days where he knows he is terminal and the others where he is back in denial. I know I am not in his shoes and can only imagine what is going through his mind. I try to take some days here and there off from work just so I can spend it with him, but when i do it seems like something else comes up whether it be fighting for his health insurance or something caused by this all and it stinks for I end up losing the day with all this stuff and then I am back to work and we really didn't spend anytime together. There are days I just want to scream at someone and then there are days I just cry and cry, only when the kids aren't home though..I know I should show my emotions around them but at this point my son wants no part of this he doesnt' talk about it and when you try to sit with him and ask him he just shrugs his shoulders and walks away. my daughter takes in what she can, I ask them upfront how much they want to know and I will not go beyond that amount. But they can see. He deteriorates daily. I do believe when we go back to the dr's in 2 weeks, they will find it has spread some more for he is in pain everyday in his shoulders, back, hips and legs. The only part that doesn't bother him is from elbow down and knees down. He does not work for being a heavy equipment mechanic he no longer could do his job, he has been on disability since his diagnosis last July. This last month or so has been the hardest, like you lily everyone is surprised for I have been so strong for the last year and have been pushing onward but there has to come a time when you finally say its enough. I have been pushing off my own issues, my nerves are just killing my body and I know I have to come first sometimes to be worth something to the others that need me. But I don't know where that time comes in. I get up go to work come home get dinner done, clean up from that clean up the house do some laundry and by then it's to bed and back at it again the next day. even the weekends seem to be filled anymore. I have looked into taking a leave from work but in reality we need my full income to even survive. I know many others have this issue and I am really at a loss. I just don't know how people do it for years and years I give everyone who does a lot of credit for like I said it's only been 1 yr and I am so burnt out and we still have a long road ahead of us. I know your guilt for feeling unhappy for I am there. I just wish we could turn back the clock to better days. I know they say your not given anything more then you can handle..well I am beyond my breaking point. I love my husband dearly and I am going to be there for him for as long as he needs me thats forsure. I know some days are going to be hard as time goes on and I just hope I find the strength to get through them. I hope you find the strength you need also and the faith that even though you two seem different these days and don't feel like things were they way they used to be, same here, but I do believe we are just scared and worried and that seems to change us. The best of luck to you both during this trying time.

John23

From a stage 3c colon cancer victim........

It's almost three years after from my initial surgery and diagnosis.
It usually takes a cancer cell -at least- two years to grow to a size
they can determine is a cancer cell..... Please keep that in mind.

There are many, many stage 4 cancer victims still alive after
many years of their initial diagnosis, so fear should be set aside
until that "day" is closer.

For anyone in the "last stage", I would highly suggest they research
information from the Syracuse Cancer Research Center regarding
Hydrazine Sulfate. They are a non-profit organization, and do not sell
that substance, but they might be able to tell you who carries it.

Since I am not yet at the "last gasp", I have been using Traditional
Chinese Medicine, and herbal decoctions, rather than the usual
"Chemical therapy" that's normally suggested by Western Medicine.

I had to wait for my surgical wounds to heal before starting "chemo",
and at six months post-op, they told me that it was really too late
for "chemo".

I used Chinese herbs, since there wasn't anything else that the
doctors could give me.

One of the herbs are presently being studied by Merck in their
effort to determine what the exact chemical property is, that manages
to actually cause cancer cells to die. I seriously doubt they will
find what they're looking for, since two herbs must be used to effect
any "cure".

Perhaps they're not trying to find a "cure", but to simply find reasons
not to use a relatively inexpensive compound, or to actually find a cure?

Cancer victims should be advised, that there are indeed better ways
to stay alive, than what Western Medicine has to offer.

That said....

My wife is suffering, as I am. To a cancer victim, every cough,
every pain, every possible nuance of ill health, is attributed to the
possibility that it's really cancer rearing it's ugly head.

I have been bestowed an Ileostomy. My ileum (or upper intestines)
have been detached from the lower colon portion, and pokes through
my side. I have to wear a "bag" to contain the ever-flowing contents
of my upper intestinal tract.

Part of my lower intestines (about 1 foot) remain, along with the
anus and rectum. A "reversal", or reconnection, would take a major
operation, with all it's hazards. It's not anything to be looked forward to.

My wife of 46 years, never having been an overly affectionate person,
appears to be even more remote to me after my diagnosis.

But is she? Or have I been reclusive?

Counseling isn't a one-sided affair; Both parties must attend!
Both parties are afraid of losing their partner, each partner
needs the consoling of the other.

Both partners have to realize their commitments to each other,
and must provide each other with the support and happiness
that brought them together in the first place.

Dying isn't an easy affair. If your spouse was hit by a truck
and died, it would be sudden, sure and final; you would have
to deal with it because it's happened and it's over.

Cancer is a BIG truck hitting you in s l o w m o t i o n.

As a spouse, or victim, you don't know if it's going to kill you,
or your partner; you have absolutely no ability to determine
what the final outcome will be!

As a partner, you have to reach out and give hope.

As a victim, you have to reach out and give hope.

You have to live for the moment and enjoy what you have now.
You have to live like you've never lived before, doing things
that would have required a dare.... Live; dare to live.

Stop being a "care giver", and be a "care provider".

Both partners need their partners support. Let it be known,
and say it out loud!

And please..... do not give up hope. There are alternative
methods to use. Do some research!

And please, do not give up hope, or the demand for caring
and affection. It's there, waiting to be drawn out!



Good health!

alamo1234

StrLitNite said:

I knew I wasn't alone in any
I knew I wasn't alone in any of this but to actually hear someone feeling the same way I do is kind of a relief. I know it sounds horrible and i was beginning to feel like a monster feeling this way. I have only been doing it a year but I am beyond burnt out. My husband was diagnosed with stage iv lung cancer a year ago this month, he is 53 and I am 38. He has been through IV chemo treatments and it has metastasized through out the year. It was in the brain and lung from the beginning and has moved onto the right adrenal gland and the stomach. At this point he is on tarceva, which as the dr. put it, would be he last option. I take care of him, take care of our kids, our house and work fulltime through it all. I am the only one in the household that can drive and it seems like there isn't a day that I am not driving some where for someone. The kids do help around the house, my son will be 17 next month but he's a little harder to push for help, my daughter 15, tries her best to do what she can but I limit things I ask her to do for I know it stresses her too and they are to young to be stressed out. We barely talk like we used to, we have been together almost 19yrs and things just drastically changed with all this. I want to say i am frustrated, but that really isn't the word, but along the same lines. Not with my husband thats forsure just with the disease. We have had conversations regarding what is happening but nothing to deep for he has his days where he knows he is terminal and the others where he is back in denial. I know I am not in his shoes and can only imagine what is going through his mind. I try to take some days here and there off from work just so I can spend it with him, but when i do it seems like something else comes up whether it be fighting for his health insurance or something caused by this all and it stinks for I end up losing the day with all this stuff and then I am back to work and we really didn't spend anytime together. There are days I just want to scream at someone and then there are days I just cry and cry, only when the kids aren't home though..I know I should show my emotions around them but at this point my son wants no part of this he doesnt' talk about it and when you try to sit with him and ask him he just shrugs his shoulders and walks away. my daughter takes in what she can, I ask them upfront how much they want to know and I will not go beyond that amount. But they can see. He deteriorates daily. I do believe when we go back to the dr's in 2 weeks, they will find it has spread some more for he is in pain everyday in his shoulders, back, hips and legs. The only part that doesn't bother him is from elbow down and knees down. He does not work for being a heavy equipment mechanic he no longer could do his job, he has been on disability since his diagnosis last July. This last month or so has been the hardest, like you lily everyone is surprised for I have been so strong for the last year and have been pushing onward but there has to come a time when you finally say its enough. I have been pushing off my own issues, my nerves are just killing my body and I know I have to come first sometimes to be worth something to the others that need me. But I don't know where that time comes in. I get up go to work come home get dinner done, clean up from that clean up the house do some laundry and by then it's to bed and back at it again the next day. even the weekends seem to be filled anymore. I have looked into taking a leave from work but in reality we need my full income to even survive. I know many others have this issue and I am really at a loss. I just don't know how people do it for years and years I give everyone who does a lot of credit for like I said it's only been 1 yr and I am so burnt out and we still have a long road ahead of us. I know your guilt for feeling unhappy for I am there. I just wish we could turn back the clock to better days. I know they say your not given anything more then you can handle..well I am beyond my breaking point. I love my husband dearly and I am going to be there for him for as long as he needs me thats forsure. I know some days are going to be hard as time goes on and I just hope I find the strength to get through them. I hope you find the strength you need also and the faith that even though you two seem different these days and don't feel like things were they way they used to be, same here, but I do believe we are just scared and worried and that seems to change us. The best of luck to you both during this trying time.

New Here
It's been 6 months caregiving for my wife aged 47 w Stage IV colon cancer. The first series of chemo, which included a trial, almost killed her after 12 weeks. She's back after time off to recover from that with partial doses of 5FU, which is starting to take its toll. We have kids, home, job, stress, pain...it's just a lot. Was looking for resources on line when I found this forum and these posts. You are all amazing to go through this for so long. I'm at a loss.

seanslove

lily33,

My heart goes out to you as I read your post and the responses of others. While I only have four months into this,which pales in comparsion to your five years,the ware and tear an one's life is much the same. I guess we are lucky not to have children,however,our two dogs are the same as children to us due to the fact we could not have children. The emotional disspare which you feel I can understand,as days go by I question more and more what life has left to offer us. I keep these feelings at bay,as I know they will serve no aid to my husband. At all times I wish this had never happened as our life was so perfect prior to the day he went to the hospital.
I guess,at this point and time,our marriage still lives strong,as we have found new ways of being,we hold hands more,and even when we talk less,the glances and eye contact have grown so strong which have taken place of being able to hold one another for hours as we once did.
For a short period,upon coming home from the hosptial in May,he too,lived in his own world,but found this to be a lonely place very quickly,which upon doing so,began to open up his true feelings. I fear not many in this world would want to know the true feelings which a person with cancer goes through,as excepting the words can be very hard and not fit in accordance with mosts moral beliefs.

Being a pysch major,I know all too well,to not listen would only cut off communication of his true emotions. The very first day I tried so hard to shut his thoughts down as I could not agree with them,and he started to pull back. I did not want him to pull back and stop talking so I took a new approach,which I promise you was the hardest words to ever say in my life. I told him,if this is really what you decide to do at some point and time,I will put my feelings aside and understand.
I guess what it all comes down to,is no matter how much support you have,the time seems to come,when the biggest suport must be found between yourself and your spouse. I understand this sounds easier said than done,however,I believe it is that connection which will bring your worlds back together.

meramire

I feel your pain. It is
I feel your pain. It is very hard caring for a loved one with cancer. I saw my grandmother dying from cancer, and it was very hard for me. I was put on an antidepressant just to cope with her loss.
Emotionally, it is not easy. Caregiving is very exhausting. I am so sorry that you are going through a tough time.

sue Siwek

soccerfreaks said:

wise and noble determination
While these decisions are by nature very personal and very agonizing, I explicitly included the word 'wise' in describing my own interpretation of lily's determination to stay, for at least a couple of reasons.

The first is rather obvious: she is having a very hard time dealing with this relationship which is not a relationship. But there is every indication that things may change (according to the professionals) and that hub will come around.

The second and much more critical aspect of this decision has to do with the children. What is the lifelong impact upon them if they see mom leaving their dad when he is at his absolute nadir physically, psychologically, emotionally?

Just a thought.

Take care,

Joe

joe, you must be a
joe, you must be a therapist! i agree with everything you have said but would add that lily has already said that she will never leave. so, get to work. get help for yourself and your children, call upon family, friends and therapy for yourself and children. if hubby won't go at least the rest of you will have tools for coping.

sue Siwek

seanslove said:

lily33,

My heart goes out to you as I read your post and the responses of others. While I only have four months into this,which pales in comparsion to your five years,the ware and tear an one's life is much the same. I guess we are lucky not to have children,however,our two dogs are the same as children to us due to the fact we could not have children. The emotional disspare which you feel I can understand,as days go by I question more and more what life has left to offer us. I keep these feelings at bay,as I know they will serve no aid to my husband. At all times I wish this had never happened as our life was so perfect prior to the day he went to the hospital.
I guess,at this point and time,our marriage still lives strong,as we have found new ways of being,we hold hands more,and even when we talk less,the glances and eye contact have grown so strong which have taken place of being able to hold one another for hours as we once did.
For a short period,upon coming home from the hosptial in May,he too,lived in his own world,but found this to be a lonely place very quickly,which upon doing so,began to open up his true feelings. I fear not many in this world would want to know the true feelings which a person with cancer goes through,as excepting the words can be very hard and not fit in accordance with mosts moral beliefs.

Being a pysch major,I know all too well,to not listen would only cut off communication of his true emotions. The very first day I tried so hard to shut his thoughts down as I could not agree with them,and he started to pull back. I did not want him to pull back and stop talking so I took a new approach,which I promise you was the hardest words to ever say in my life. I told him,if this is really what you decide to do at some point and time,I will put my feelings aside and understand.
I guess what it all comes down to,is no matter how much support you have,the time seems to come,when the biggest suport must be found between yourself and your spouse. I understand this sounds easier said than done,however,I believe it is that connection which will bring your worlds back together.

you know, i experienced
you know, i experienced something early on in my husbands illness. he has had a grade 3 brain tumor as well as parkinsons' after having radiation, stereo tactic radiation and chemo as well as blood clots he resorted to lying on the sofa covered with a blanket for weeks. the only way that i knew he was alive was a slight twitch of his foot. he had long stopped bathing, shaving or brushing his teeth! i guess he thought his death was imminent! well, finally i had enough. went into our den and forcefully made him get up, brush his teeth and clean up. he has survived nealy 10 years now! he also would not let me buy him new clothes, so one day maybe 5 years later i announced that since he was going to continue living i was going to buy him some clothes! tough love is powerful!

FineChina

Stage 4 Kidney Cancer Not necessarily Fatal
I too am suffering from stage 4 kidney cancer. I am by no means an unrealistic optomist on this disease. For the longest time, I was convinced like you that my disease was necessarily fatal.

But all of a sudden its been 3 years and my cancer is slightly less today than 3 years ago when I was first diagnosed with stage 4.

I am treated at MD Andersen, one of the leading kidney cancers in the world and locally in St. Louis at Barnes.

Funny thing, both my oncologist at MDA and at Barnes have told me that I should be around for some time.

My oncologist at MDA stresses that stage 4 kidney cancer for many today may be a chronic incurable but not necessarily fatal disease.

I mentioned the stats you see about only 10% of stage 4 RCC patients living 5 years. The oncologist at MDA says that stat is outdated, prefates the new targetted therapies and that he treating many stage 4 RCC patients 5 and more years out.

When your husband was first diagnosed 5 years (or even me 3 years ago, there had not been a new drug approved for kidney cancer in 15 years since IL 2. In 3 years the FDA has approved 6 new drugs for stage 4 RCC. And there is much in the pipeline.

My oncologists say I have a real chance of not dying from this disease. After denying what they say as being nice, I finally realize that oncologists are not normally known to sugar coat.

Your husband has a very real chance of living many years. Really.