Is She Really Dying?

lostinthehaze

Hi there,

My mother in law has stage four gallbladder cancer (spindle cell carcinoma) that was discovered after the removal of her gallbladder. Unfortunately it was discovered a few weeks after the gallbladder surgery and has spread deep into her abdomen. It was said to be inoperable.

She has multiple tumors - one very large one where her gallbladder was that has been steadily growing since the removal of her gallbladder two months ago. It is the size of a fist sticking out of her abdomen. Since very little is known about this type of cancer, they could only offer chemo as a possibility for remission. She gave up on chemo after two sessions as the side effects were devastating. We thought she was going to die that week.

Now she has been given three months to live. Hospice has been called in and family members are taking shifts to stay with her. However, I have to admit that she is doing fantastic considering. She has a small appetite, but is eating regularly. She does sleep a lot. But otherwise she seems really normal to me. I'm having a difficult time thinking of her as someone who has three months to live. Does anyone else feel this way?

I don't have any experience with cancer and I've never had anyone in my family die this way (slowly). I feel like life is on pause. My husband is staying with her for the next week and a half. We have a small son, so it is difficult to spend extended periods of time there as she needs her rest. I feel angry, upset... well, a million different emotions all at once. We thought we had all the time in the world and now this sudden and horrifying diagnosis.

I just feel so alone right now. I keep looking and looking for information - like somehow it will make me feel better. But it just leaves me more lost and confused. How do you get through something like this?

agpnancy

I'm Lost Too
I just joined this group today - my husband was diagnosed with advanced stage liver cancer just about a month ago, and I totally know about feeling so alone. I have friends and family who are trying to be so supportive, but at times they make me feel worse, because they're not the ones having to deal with it from day to day, although I know they're hurting too.

I think that knowing you are NOT alone is what may count the most right now. You're going through it, so am I, and so are many others out there. Somehow, at least to me, it seems to help, just having that knowledge.

I can't really offer help at this point with information, but from what I've looked through tonight, there are people out here who can. Take comfort in the fact that there are people, total strangers, who share in your pain, because we all have something in common.

My thoughts and prayers go out to you and your family.

lostinthehaze

agpnancy said:

I'm Lost Too
I just joined this group today - my husband was diagnosed with advanced stage liver cancer just about a month ago, and I totally know about feeling so alone. I have friends and family who are trying to be so supportive, but at times they make me feel worse, because they're not the ones having to deal with it from day to day, although I know they're hurting too.

I think that knowing you are NOT alone is what may count the most right now. You're going through it, so am I, and so are many others out there. Somehow, at least to me, it seems to help, just having that knowledge.

I can't really offer help at this point with information, but from what I've looked through tonight, there are people out here who can. Take comfort in the fact that there are people, total strangers, who share in your pain, because we all have something in common.

My thoughts and prayers go out to you and your family.

Talking
Hi there agpnancy,

I am so sorry to hear about your husband. I could not imagine going through this with my husband. It is difficult enough with my mother in law. How is your husband doing right now? Is he going through treatment at all? I understand what you mean about family trying to be supportive. My family was very supportive around the time of diagnosis, but now it is almost like they are avoiding conversations that have to do with my mother in law and her cancer. Unfortunately, that is what my life is revolving around right now and I don't have much else to talk about.

Thank you for your thoughts and prayers - the same to you.

agpnancy

lostinthehaze said:

Talking
Hi there agpnancy,

I am so sorry to hear about your husband. I could not imagine going through this with my husband. It is difficult enough with my mother in law. How is your husband doing right now? Is he going through treatment at all? I understand what you mean about family trying to be supportive. My family was very supportive around the time of diagnosis, but now it is almost like they are avoiding conversations that have to do with my mother in law and her cancer. Unfortunately, that is what my life is revolving around right now and I don't have much else to talk about.

Thank you for your thoughts and prayers - the same to you.

Talking back
Hi,

Thanks for your response. I wanted to tell you how blessed your mother-in-law is to have a daughter-in-law who loves her (and her son) so much. I can understand how hard this is for you, and I know she must be a wonderful person - it's amazing how many in-laws don't feel that way. Be proud of yourself for the kind of person you must be. I can tell you're strong enough to help your family through this - even if you can't see it right now.

My husband is receiving Nexavar treatment (pills) right now, but the damage was so advanced by the time they diagnosed this, they don't give us much hope except maybe 2 months over the 6 months they gave him to live. What hurts the most is that he was diagnosed with Hepatitis C 6 years ago, and he chose to delay treatment for that because he didn't want to give up his "quality of life" (i.e. - drinking). I fought for a long time, but I guess our children and I were not enough to fight for (he kept saying tomorrow, I'll quit and get the treatments they suggested that could have avoided this.) I love him dearly, but it really hurts that he doesn't seem to care enough to try. I've spent many late nights on-line searching for possible treatment options, but he doesn't want to hear about anything. I just love him too much to give up.

Honestly, I don't know if I belong with a cancer support group, Al-Anon, or a mental hospital right now. One way or another, I'll get my children and myself through this. The love and support I'm finding in the various support groups gives me faith - I hope you can find the same.

JackieA

agpnancy said:

Talking back
Hi,

Thanks for your response. I wanted to tell you how blessed your mother-in-law is to have a daughter-in-law who loves her (and her son) so much. I can understand how hard this is for you, and I know she must be a wonderful person - it's amazing how many in-laws don't feel that way. Be proud of yourself for the kind of person you must be. I can tell you're strong enough to help your family through this - even if you can't see it right now.

My husband is receiving Nexavar treatment (pills) right now, but the damage was so advanced by the time they diagnosed this, they don't give us much hope except maybe 2 months over the 6 months they gave him to live. What hurts the most is that he was diagnosed with Hepatitis C 6 years ago, and he chose to delay treatment for that because he didn't want to give up his "quality of life" (i.e. - drinking). I fought for a long time, but I guess our children and I were not enough to fight for (he kept saying tomorrow, I'll quit and get the treatments they suggested that could have avoided this.) I love him dearly, but it really hurts that he doesn't seem to care enough to try. I've spent many late nights on-line searching for possible treatment options, but he doesn't want to hear about anything. I just love him too much to give up.

Honestly, I don't know if I belong with a cancer support group, Al-Anon, or a mental hospital right now. One way or another, I'll get my children and myself through this. The love and support I'm finding in the various support groups gives me faith - I hope you can find the same.

Hi to you both
sorry to meet at these circumstances, but it is always a blessing to be able to reach out to someone. Both of you, I am very sorry. I am someone that has been on both ends of your story. I watch my mother go through hospice and now my husband has stage iv breast cancer with mets to bones and recently liver. He is very ill. I want to say that since the dr gave approval for hospice they can usually gauge the time. Hospice was a great help for us. As you know that hospice is only approved for people with about 6 months expectancy. However, I have read and heard of stories of people who come off hospice and live much longer than expected. Trust the hospice nurse. In my experience, our nurse was wonderful. She walked us through the entire process, down to the second my mom passed away...I know this sounds crazy, but it was one of the most beautiful experiences I have ever had. the hard part was watching her suffer so much--but it was more joy watching her go away to be with the Lord. Maybe someone else can help attest.

agpnancy--you are at the right place. I have done the same for years. I have been at this thing now-3 years. A lot of pain, sickness, sleepless nights, thought I was going to be the one to lose my mind, but through God and good friends, I have made it so far. My husband is still hanging on. Your husband is so afraid. It is a fight to live. He's never been here before, and neither have you, so it will be like this. Stay strong, reach out as much as possible. The wonderful people on this site have been through what you are going through. Their experience and support will offer some relief and guide. In the meantime, you guys are at the right place. There are no wrong questions. Praying for you.

lostinthehaze

JackieA said:

Hi to you both
sorry to meet at these circumstances, but it is always a blessing to be able to reach out to someone. Both of you, I am very sorry. I am someone that has been on both ends of your story. I watch my mother go through hospice and now my husband has stage iv breast cancer with mets to bones and recently liver. He is very ill. I want to say that since the dr gave approval for hospice they can usually gauge the time. Hospice was a great help for us. As you know that hospice is only approved for people with about 6 months expectancy. However, I have read and heard of stories of people who come off hospice and live much longer than expected. Trust the hospice nurse. In my experience, our nurse was wonderful. She walked us through the entire process, down to the second my mom passed away...I know this sounds crazy, but it was one of the most beautiful experiences I have ever had. the hard part was watching her suffer so much--but it was more joy watching her go away to be with the Lord. Maybe someone else can help attest.

agpnancy--you are at the right place. I have done the same for years. I have been at this thing now-3 years. A lot of pain, sickness, sleepless nights, thought I was going to be the one to lose my mind, but through God and good friends, I have made it so far. My husband is still hanging on. Your husband is so afraid. It is a fight to live. He's never been here before, and neither have you, so it will be like this. Stay strong, reach out as much as possible. The wonderful people on this site have been through what you are going through. Their experience and support will offer some relief and guide. In the meantime, you guys are at the right place. There are no wrong questions. Praying for you.

Two Weeks
Hello,

Well. My husband is back home as the relatives have started to file in to care for her for a week or so at a time for the next month. It is amazing what a difference two weeks make with this terrible cancer. She is so weak and tired. Her face is sunken in and she is falling here and there. My husband says the very large tumor is even bigger and I noticed her idly fidgeting with it when I saw her. The poor woman was crying on and off the whole time I was there. What a miserable disease this is. People shouldn't have to go through this. I'm afraid to see what two more weeks will bring. They ordered a cane and a hospital bed for her from hospice. She has a morphine drip waiting for her when the pain gets worse. *sigh*

How are you both doing this week?

Noellesmom

lostinthehaze said:

Two Weeks
Hello,

Well. My husband is back home as the relatives have started to file in to care for her for a week or so at a time for the next month. It is amazing what a difference two weeks make with this terrible cancer. She is so weak and tired. Her face is sunken in and she is falling here and there. My husband says the very large tumor is even bigger and I noticed her idly fidgeting with it when I saw her. The poor woman was crying on and off the whole time I was there. What a miserable disease this is. People shouldn't have to go through this. I'm afraid to see what two more weeks will bring. They ordered a cane and a hospital bed for her from hospice. She has a morphine drip waiting for her when the pain gets worse. *sigh*

How are you both doing this week?

something for the anxiety
Don't fail to ask that something be prescribed for the anxiety if you have not already. Atavan worked well for my mom.

agpnancy

lostinthehaze said:

Two Weeks
Hello,

Well. My husband is back home as the relatives have started to file in to care for her for a week or so at a time for the next month. It is amazing what a difference two weeks make with this terrible cancer. She is so weak and tired. Her face is sunken in and she is falling here and there. My husband says the very large tumor is even bigger and I noticed her idly fidgeting with it when I saw her. The poor woman was crying on and off the whole time I was there. What a miserable disease this is. People shouldn't have to go through this. I'm afraid to see what two more weeks will bring. They ordered a cane and a hospital bed for her from hospice. She has a morphine drip waiting for her when the pain gets worse. *sigh*

How are you both doing this week?

Hi,
Good to hear from you
Hi,

Good to hear from you again. I'm so glad the family is stepping up to give you and your husband some help with this. I totally agree that this disease is something no one or their loved ones should have to deal with.

My husband was reasonably OK last week, but by the end of the week, he was almost totally incoherent and unable to walk alone anymore. This is moving much quicker than anyone anticipated, and I'm scared to death. We were told 6 months at the beginning of May, but now he has a couple of weeks, maximum. I'm feeling robbed of the time I thought we had, though I'm very thankful that he won't be suffering for much longer. It's so horribly hard to watch. His family is being very supportive, emotionally, at least. It took two days for me to have his son here long enough for me to take a shower, but I feel much better now - I guess it's the simple day-to-day things that matter the most, except for his care.

The hospice care "team" started up on Sunday, which is helping a lot. He's got a hospital bed, walker, cane, oxygen, and an "emergency" medical kit with Adavan and morphine (thank God they're drops, and I don' have to give injections.)

Again, I'm happy he won't be suffering, but I'm SO not ready to deal with living without him.

Keep in touch when you can. My thoughts and prayers are with you and your family, along with all the rest of you that are having to live this hell right now.

Nancy

lostinthehaze

Noellesmom said:

something for the anxiety
Don't fail to ask that something be prescribed for the anxiety if you have not already. Atavan worked well for my mom.

Thanks
Hi There Noellesmom,

Thank you for the advice. Fortunately they have her on a cocktail of drugs that do include anti-anxiety medication. Unfortunately there is just a certain amount of anxiety that can't be helped.

Hope all is well with you!

lostinthehaze

agpnancy said:

Hi,
Good to hear from you
Hi,

Good to hear from you again. I'm so glad the family is stepping up to give you and your husband some help with this. I totally agree that this disease is something no one or their loved ones should have to deal with.

My husband was reasonably OK last week, but by the end of the week, he was almost totally incoherent and unable to walk alone anymore. This is moving much quicker than anyone anticipated, and I'm scared to death. We were told 6 months at the beginning of May, but now he has a couple of weeks, maximum. I'm feeling robbed of the time I thought we had, though I'm very thankful that he won't be suffering for much longer. It's so horribly hard to watch. His family is being very supportive, emotionally, at least. It took two days for me to have his son here long enough for me to take a shower, but I feel much better now - I guess it's the simple day-to-day things that matter the most, except for his care.

The hospice care "team" started up on Sunday, which is helping a lot. He's got a hospital bed, walker, cane, oxygen, and an "emergency" medical kit with Adavan and morphine (thank God they're drops, and I don' have to give injections.)

Again, I'm happy he won't be suffering, but I'm SO not ready to deal with living without him.

Keep in touch when you can. My thoughts and prayers are with you and your family, along with all the rest of you that are having to live this hell right now.

Nancy

Senna and Distractions
Hi Nancy,

I'm so sorry it has come to this point in the process. I'm glad, at least, that hospice is working out well for you both and that you have family there. I do think that having hospice is such a wonderful help and it takes so much off our minds. There aren't any unanswered questions floating around out there when it comes to medication and how to make things more comfortable. There are so many people out there who are alone or just have very little help and support. I try to remember how lucky we are to have that going for us.

I can't imagine having to think about how to go on afterwards. For us it will be very difficult, but because she wasn't a part of our lives in the way that a husband or wife is, I imagine it won't be as difficult as it will be for you. We've decided to take a trip afterwards to clear our heads and to give us something happy to look forward to in this time. We've also been thinking about moving for a long while (long before the cancer) and we've resumed looking around at houses. It isn't anything serious, but it keeps our minds off of everything for a time and somehow keeps us happy. Happy distractions. Sometimes you have to just get in your car and go for a drive, you know?

They are having some trouble over there today. Apparently she isn't eating enough and isn't having bowel movements. She was taking senna three times a day *and* suppositories and they weren't working. They gave her an enema and that didn't work. They are going to try another medication as sometimes people who have their gallbladders removed suffer constipation. There is also speculation as to whether or not the tumors are causing a blockage. I read elsewhere on this board that that is how another woman suffering from this type of cancer eventually passed, so this is kind of scary.

Still, we're hanging in here... I hope you are too.



~ Tamara

MemphisMargaret

lostinthehaze said:

Senna and Distractions
Hi Nancy,

I'm so sorry it has come to this point in the process. I'm glad, at least, that hospice is working out well for you both and that you have family there. I do think that having hospice is such a wonderful help and it takes so much off our minds. There aren't any unanswered questions floating around out there when it comes to medication and how to make things more comfortable. There are so many people out there who are alone or just have very little help and support. I try to remember how lucky we are to have that going for us.

I can't imagine having to think about how to go on afterwards. For us it will be very difficult, but because she wasn't a part of our lives in the way that a husband or wife is, I imagine it won't be as difficult as it will be for you. We've decided to take a trip afterwards to clear our heads and to give us something happy to look forward to in this time. We've also been thinking about moving for a long while (long before the cancer) and we've resumed looking around at houses. It isn't anything serious, but it keeps our minds off of everything for a time and somehow keeps us happy. Happy distractions. Sometimes you have to just get in your car and go for a drive, you know?

They are having some trouble over there today. Apparently she isn't eating enough and isn't having bowel movements. She was taking senna three times a day *and* suppositories and they weren't working. They gave her an enema and that didn't work. They are going to try another medication as sometimes people who have their gallbladders removed suffer constipation. There is also speculation as to whether or not the tumors are causing a blockage. I read elsewhere on this board that that is how another woman suffering from this type of cancer eventually passed, so this is kind of scary.

Still, we're hanging in here... I hope you are too.



~ Tamara</p>

The craziness, the guilt
Hi y'all,

My husband has a dozen brain tumors. He is on Zelboraf 1/2 dose tablets...the full dose put him in the hospital twice in 2 months. He just completed his 4 rounds of Yervoy. The oncologist always seems upbeat and hopeful. My husband has had a positive attitude on facebook and with others. What I see on a day to day basis is not optimistic. He started out last year obese and has now lost 120 lbs. We are 7 months out from date of diagnosis. From what I have read, metastatic melanoma of the brain can take him any time so I have no idea what to expect day to day. We moved from our house to an apartment so we would not have to worry about home maintainence anymore and I can afford the bills on my salary alone. Every night I lie beside him and there is nothing there, just skin hanging on bones. He won't eat much of anything. The doctor has A patient who is 8 yrs out from diagnosis and doing fine. I wish I could see that for us but I don't. I have gone thru the parade of family visiting and staying with us for the past couple of months and the help was nice but so is a quiet place. I go to work most days...and some days I work from home...and sometimes it is so hard to focus. I know people mean well but I hate hearing "don't claim it" and "he will be fine" There is nothing else to do but hang in there. Last Saturday I tried to be happy, gave myself a little time to actually go to the bookstore...saw a fathers day display and the tears welled up and that was it, I had to leave. I feel guilty because I am not optimistic with what I see. I lost my parents in my early 20's...30+ years ago now. We went to the funeral home ahead to plan while we had ourselves together. Today I wondered if that is what I need to do now. I read last night that the new mean for this cancer on the medication he is on is 16 months which is more than the 11 months when our journey began. But the quality of our lives just seems to suck. I think about him not suffering, not being sick, not being tired, not having it take everything out of him to walk with a cane from the recliner to the bathroom. I think of my life without him and how different it will be. I am not wanting to let go, at least not yet but I don't feel like a wife anymore...just a caregiver...I miss the man I married who was so full of fun and laughter. So if he is here with me a year from now, will he ever joke and play again? I don't think he will ever go back to work again. I keep asking him to let me take him out in the wheelchair but he says no, he wants to use the cane but when he does that, within 5 minutes he is exhausted. Does anyone else out there think about all of these things and feel guilty for thinking?

grandmafay

agpnancy said:

Hi,
Good to hear from you
Hi,

Good to hear from you again. I'm so glad the family is stepping up to give you and your husband some help with this. I totally agree that this disease is something no one or their loved ones should have to deal with.

My husband was reasonably OK last week, but by the end of the week, he was almost totally incoherent and unable to walk alone anymore. This is moving much quicker than anyone anticipated, and I'm scared to death. We were told 6 months at the beginning of May, but now he has a couple of weeks, maximum. I'm feeling robbed of the time I thought we had, though I'm very thankful that he won't be suffering for much longer. It's so horribly hard to watch. His family is being very supportive, emotionally, at least. It took two days for me to have his son here long enough for me to take a shower, but I feel much better now - I guess it's the simple day-to-day things that matter the most, except for his care.

The hospice care "team" started up on Sunday, which is helping a lot. He's got a hospital bed, walker, cane, oxygen, and an "emergency" medical kit with Adavan and morphine (thank God they're drops, and I don' have to give injections.)

Again, I'm happy he won't be suffering, but I'm SO not ready to deal with living without him.

Keep in touch when you can. My thoughts and prayers are with you and your family, along with all the rest of you that are having to live this hell right now.

Nancy

Lurking
Just lurking. So much that is said here brings back memories of the things I felt. So often we think we have feelings that are unique. Sometimes we feel guilty for those feelings. If you read over just a few of the posts here, you realize that your feelings are often the same, that others feel guilt, too. There is comfort in knowing you are not alone. I lost my husband in 2009, but I still come here to lurk and occassionly post. I just lost another friend to this disease and learned that another one has a cancer dx. Life goes on, but so does death. I guess I wasn't just lurking. Once again I have come here to share and know I am not alone, either. Hugs everyone. Take care.