End Stage Bile Duct Cancer

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End Stage Bile Duct Cancer

by Sisterofvictim on Mon Sep 12, 2011 04:58 AM

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My sister is suffering from end stage bile duct cancer, and I have been watching your discussions on the boards.  They have helped me.  I love my sister very, very much.

My sister is still young and has a husband and two young children.

Now I would like to ask what to expect from those of you who may know.

My sister is in stage 4.  Her cancer has spread to her liver and her lymph nodes.  Her trial drugs stopped working, so she has been off chemo for around a month.  She had chemo every week for 3 years before that.  She has severe abdominal pain and they have her on oxycontin patches (2) and methadone. This helps to some degree.  She has lost 35 pounds and doesn't eat for a week at a time.  That started because of nauseau, but now it's just how she lives.

Today she started to see Jaundice in her eyes and skin.  She was so weak today that she could only walk by holding onto things and had to rest every six steps.  Her speech is slurred and she stares into space a lot.  If you can believe this, she still wants to work and go places and has not taken to bed yet.

I would really appreciate any information people could provide based on experience about what we can expect next.  Also, how long do people live like this? 

I am really not sure what to expect at all.  Her children are not prepared at all right now, and my sister isn't either.

RE: End Stage Bile Duct Cancer

by rrtoon1 on Wed Sep 14, 2011 11:02 AM

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My prayers are with you during this time. My wife is currently coming to the end of her battle with this Cancer. As I have seen from my wife, your sister is starting the process of moving on to the next life. 3 weeks ago my wife said she was feeling great and wanted to get up and move around and start chemo again. Unfortunately she was feeling good because the chemo was stopped but she was getting weaker everyday. Her speach also started to slur and now she can hardly speak. Your sister will get weaker and sleep more. Also, when you are talking to her she will continue to "See right through you".

I would sit with your sister, as I did with my wife, and let her know what is happening. It will be hard at first but hopefully she will understand. 2 weeks ago my wife and I discussed what funeral plans she wanted and she got to tell me all her wishes. I think that is a definite thing to do.

As for the kids, I have 4 from 7 to 13 years old. We brought them upsatirs a few weeks ago while my wife was "with it" and told them about what was going on. We stat3ed that the chemo wasn't working anymore and the cancer was spreading. They asked is mommy going to die and we said that eventually she would. It was devestating at the time but a few hours later they were better. Kids can tell what's going on no matter how much you try to hide from them. I talk to my kids everyday about what is happening. We cry, laugh and just hug each other. They know why they are getting dress shirts, blazers and new dresses. I have talked to a lot of people who have lost a parent and nobody told them they were sick. All those people have a void because they didn't get a chance to say what they wanted to their parent. A simple "i love you" and "i will miss you" or "we will be ok" does a lot to ease the dying persons mind and the childs.

I sit by my wife everyday and pray and talk to her. Most of the time she is lost in space and confused but there are those moments of clarity that I hang onto. My wife went under hospice care on august 25th. On Sept. 4th we had to move her to a facility. She fell in the bathroom and was there for at least an hour. She hasn't eaten in 13 days and now her breathing is starting to change.

There is no timeline of how long things will progress. Depends on the persons mental condition, physical condition and all those factors. I think my wife has a few days left at most but you never know. The hospice team told me it can happen in an hour or a week. When she is ready, she will go.

Sorry to ramble on but just want to help and give as much info as I can from what i am going through. Be there, talk to her, pray with her and comfort her. it is going to hurt, I cry everyday. Just keep her pain free and ask about liquid morphine. She will have trouble swallowing as things progress. My thoughts and prayers are with you, her kids and her husband. Be strong, she will be at peace.

Lots a love,

Chris

RE: End Stage Bile Duct Cancer

by Sisterofvictim on Wed Sep 14, 2011 04:12 PM

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Chris --

I am so touched by the generosity of your email to give me more information when you are going through something so significant and difficult.  Thank you so very much.

You have helped me confirm what I thought may be true -- that we only have a few weeks left. 

One problem I face is that my sister is in deep denial.  On Sunday I asked her if she would accept in-house hospice care and she said she forbids the use of that word because it implies she is dying.  After sleeping all day yesterday she got up and made a couple of business calls.   I'm not sure how I can help her plan when she is not accepting something so imminent, but I am going to try if I can.  I am also going to encourage my brother-in-law to approach the kids to let them know what is happening.

You are just so kind to help me, Chris.  I cannot thank you enough.  You know how it is at this time; it's hard to put the pieces together to take the necessary steps without good information.  I have been thinking of you and your wife and sending prayers that she will be happy and at peace where she will go.  I also wish the very best for you and your kids. 

RE: End Stage Bile Duct Cancer

by rrtoon1 on Thu Sep 15, 2011 10:51 AM

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Denial will be a part of the process. A strong person doesn't want to give up the fight. My wife was surprised to hear that the doctor wanted to go on hospice care. I sat her down and told her the facts. She was getting weaker, she recently had a hospital stay and was off chemo for 2 weeks and did not regain strength, fluid was building in her abdomen again from the cancer spreading and the if she continued Chemo she would be gone in 3 weeks. Also, I asked her if she wanted to continue getting Chemo every week that was destroying her or if she wanted to be comfortable, relaxed and pain free. It was hard for her to take but when everything was spelled out it she was fine with it and wanted to rest and enjoy all the moments that were left with the kids and I. It also helped that we met with her Doctor and he stated the same things.

I think you need to tell your sister that hospice does not mean you are dying. It is more of keeping you comfortable and there is a possibility you might regain strength to continue treatment. My wife was always under pallative care so in a sense it was the same thing. Eliminating the immediate symptoms of the cancer to improve quality of life for now.

Most importantly you and her husband should sit down with her and talk about how things are going. Also, there is nothing to say YOU cannot call Hospice and discuss things. I know it is going behind your sisters back but talking to one of their Social Workers will help. They will be able to give you ideas and approaches to deal with the "denial" phase. i was hesitant at first but they are wonderful people and have helped mt family and I very much during this process.

My prayers are with you and hope that everyone finds peace and comfort...

Chris

RE: End Stage Bile Duct Cancer

by Godzgud on Thu Sep 15, 2011 03:06 PM

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On Sep 14, 2011 4:12 PM Sisterofvictim wrote:

Chris --

I am so touched by the generosity of your email to give me more information when you are going through something so significant and difficult.  Thank you so very much.

You have helped me confirm what I thought may be true -- that we only have a few weeks left. 

One problem I face is that my sister is in deep denial.  On Sunday I asked her if she would accept in-house hospice care and she said she forbids the use of that word because it implies she is dying.  After sleeping all day yesterday she got up and made a couple of business calls.   I'm not sure how I can help her plan when she is not accepting something so imminent, but I am going to try if I can.  I am also going to encourage my brother-in-law to approach the kids to let them know what is happening.

You are just so kind to help me, Chris.  I cannot thank you enough.  You know how it is at this time; it's hard to put the pieces together to take the necessary steps without good information.  I have been thinking of you and your wife and sending prayers that she will be happy and at peace where she will go.  I also wish the very best for you and your kids. 

You are in my prayers Chris as is your wife.   You are a strong and good man.   God be with you and your family as you go through this.

RE: End Stage Bile Duct Cancer

by Solutions on Thu Sep 15, 2011 04:24 PM

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Hello Sister of Victim

This is Leonard from Alamo California (Solutions) on Cancer Compass.

I read what Chris had to say. There is nothing I can add.

Chris said the way it is...he is a very good and passionate man.

Read his message again and again. Try and read in between his lines. He is telling you more than what you are reading.

I sincerely feel you pain.

I wish you and your family well. Your sister will end her journey of life here on Earth soon...when, no one ever knows.

Take Care,

Leonard

RE: End Stage Bile Duct Cancer

by Sisterofvictim on Fri Sep 16, 2011 01:53 AM

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Chris, I can't tell you how much of a difference you're making in this process.  i appreciate your advice so much. 

I am up against a lot of denial from my family.  My sister is now in the hospital.  She is sleeping 100% of the time if she can.  Today she went in for an MRI and it was sheer torture for her to edge from the bed to the gurney.  She is completely miserable.  It hurts to open her eyes.

While my sister was getting the MRI, my brother in law and I talked.  I asked him if he considered telling the kids that she is drifting away from us, and I explained to him what might be happening.  He responded by telling me to "stay positive" and how once they treat her for "whatever this is" she will be better and could live for 1-3 years.  Meanwhile, the only doctor that came by today were some interns who knew less about her condition than I do, so I wasn't able to stick my nose in where it's not welcome. If I'm not careful, they might ban me from her hospital room.

I don't know if my sister is going to be awake much any more.  She doesn't even drink anymore.  She hasn't eaten in weeks or months.  Her stomach is very distended like you said.  The jaundice has been there for 5 days and they're still trying to make it go away - yesterday they gave her a blood transfusion.  Today she couldn't pee so I asked them if they could put her on a catheter.  And since you mentioned the breathing, I watched her when she's sleeping and her breathing isn't fluid.  It's in sharp ups and downs. 

I guess the reason I tell you all of this is because my sister  is still planning her life in her head when she's conscious, my brother in law thinks she's going to live 1-3 more years, the doctors seem to be talking about possibly more cancer treatments, and the only one who seems to know what's really going on is you because you are also going through this.  I will try to sneak a conversation in with a doctor to ask them to encourage her to get hospice.  I think she is essentially already getting palliative care if that's about pain control, although nothing seems to work for more than a day.

Again, I just can't thank you enough.  I do read what you write over and over and it's comforting to get a second opinion from someone who is living what we are living.

I'm also very sorry about your wife.  You are really brave to tough this out.

RE: End Stage Bile Duct Cancer

by Sisterofvictim on Fri Sep 16, 2011 01:54 AM

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Chris, thank you for thinking of us and sending your supportive thoughts.  That is very kind of you.

RE: End Stage Bile Duct Cancer

by Solutions on Fri Sep 16, 2011 03:31 AM

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Hi Sisterofvictim,

It would be nice if you woul us your first name or any name.

This is Leonard from Alamo.

What I just read is very very sad.

Your BIL is in super denial. The doctor's seem to be a little brain dead. Why on earth an MRI. Your sister's is very close to ending.

I know all about the end and you are describing it.

It is going to be a real shock to your BIL.

I don't believe your sister will make to Hospice. She is in serious serious trouble.

You can stay positive but you must know the time is near.

I wish you and the entire family well. I am so sorry to hear what is going on especially with the family.

Take care,

Leonard from Alamo

PS...Chris, I hope Kelly is not suffering.

RE: End Stage Bile Duct Cancer

by rrtoon1 on Fri Sep 16, 2011 11:02 AM

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Sisterofvictim,

It is unfortunate and distressing to me to hear what is happening now. I know it is hard, very hard, to see someone you love having to go through more tests and pain. You are right to grab her doctor or some doctor and REALLY have them review what is going on. The only thing that helped my wife with the jaundice was the chemo. I don't know what they think can be done otherwise. But sometimes that's what doctors do. They want to keep giving medications and doing tests and procedures and follow their "checklist" of things that relate to her condition.

I read an article that stated it was "not common" for Oncologists to suggest hospice care. I am very grateful that mine did. I think Kelly and I both knew what was going to eventually happen and it allowed her to "let go" and be comfortable.

I think your BIL is in deep denial but that doesn't mean you cannot prepare yourself. Unfortunately it will be a shock to him when things progress even further. I would say now do what you can to help your sister be pain free and do what you need to do for you. I just wish the kids could be helped. It will be very hard for them to have such a sudden loss with no notice. My kids have seen my wife twice since she was under hospice and got the chance to say goodbye and tell her what they wanted.

Just keep trying on your BIL. They might call you the voice of death or whatever but it sounds like unless there is a miracle things will not get better. I think the more you try to help your sister no matter what resistance you get, the better you will be in the long run. It will give you peace and comfort knowing that you helped, not to give up, but to make her comfortable and let her be at peace in the last days on earth...

Please keep us updated when you can...Thoughts, prayers and love...

Chris

PS...Kelly is very comfortable and is not suffering, thx Leonard.

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