1 (edited by Hana Tue, 01 Jun 2010 02:26:42)

Topic: End stage- please help

Hello. I am writing from Seoul Korea. I found this site a few weeks ago and I feel like I finally found a lifeline. My dad has been diagnosed with CC about 5 months ago. He seemed to be responding to chemo pretty well until about a few weeks ago when the Doctors inserted two tubes to relieve his jaundice. Everything went downhill from this surgery. He left the hospital unable to walk and in extreme pain. He stopped chemo since then. As of today, my dad is unable to walk, eats very very little and lies down the bed except to use the bathroom which he can't go alone. He only allows my mom to help him in the bathroom. At this point, the doctor said there is nothing more they can do but to make him as comfortable as possible. He have stopped vertually all medication as there is no purpose to them anymore. I love my dad so much. He is such a strong man and seeing him in pain like this makes my blood boil. I hate cancer and what is has done to my dear dad who has worked so hard and earnestly his whole life to take care of his family. He certainly does not deserve this.

I am supposed to get married next Tuesday, exactly a week away from today in Seoul. My entire family wants to postpone the wedding except for my dad who is adament that he will survive until then. He says that my wedding is the only thing that is going for him right now. Me and my mom just don't know what to do. I read from some people's posts that the patient chooses when to leave this world. Maybe my dad will make it to the wedding. Maybe not.  I don't know and I don't know what to do. God forbid if he passes away before the wedding, we are planning on cancelling it. Its just right now everything is on loose strings.

I know this sounds strange but I really want to know if my dad can make it in the next week. As of yesturday, he can't control his bladder. What does this mean? I know the end is near but would like to know more signs of what to look at. Currently it is just me and my mom taking care of him. It is just so difficult to see him suffer like this and I really wonder how much more he will be able to take the pain without eating or drinking very little water...

Re: End stage- please help

Hana,I am so sorry for what you,your dad and family are going through.I am inclined to say dont postpone the wedding,I dont know if your dad will be able to go to it but you could involve him by coming to him,gathering with him after the wedding,just the family maybe.You do need to have a flexible plan in case he gets much worse.                        Good luck    Janet

Re: End stage- please help

Thank you Janet for your kind words. For now, we are planning on having the wedding. My dad will not be able to attend but he says he will feel much more at peace to know that I am married and have started a family of my own. My dad is quite the family man himself. I don't know why but he says that my wedding is the only thing keeping him alive right now and he is determined to make it to next Tuesday. We are just so worried what would happen if he doesn't make the next seven days. It is just really hard because he rarely eats or drinks and is in constant pain. He can't really move around either and lies in bed 24/7. He is also having difficulty talking. While physicaly he is very weak, his mind is 100% alert when he is awake.

Re: End stage- please help

Hana,

I too am so sorry to hear what your Dad and your family are going through.  I have to agree with Janet to be flexible at this point.  I would not postpone the wedding if that is his wish.  It sounds as if this is very important to him.   I am hoping that things will work out as he wants them to. 

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: End stage- please help

Hana,

I would try and respect your Dad's wishes to try and have the wedding. 

Is there something you can do to try and alleviate his pain?  Pain is very tiring on the body.  Perhaps his doctors could recommend something? 

You and your family will be in my thoughts and prayers.

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: End stage- please help

Dearest Hana, we are so very sorry to hear about your dad, our thoughts and prayers are going out to you and your family. My own opinion is to go ahead with the wedding as that is what your father really wishes you to do. Perhaps you could just have the ceremony at his bedside now and have a wedding party later when you feel more up to it. I also go along with asking the doctor for pain medication as there is no reason for him to suffer as he is doing. Wishing for the best for you and what ever that best turns out to be, wishing for the strength.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: End stage- please help

My dad is on Durogesic D- Trans patch to relieve his pain. He has been on it for the last 2 weeks and the effect is not as strong as before. Has anyone have experience with this patch? The doctor recommended that we use a patch and a half now. My dad is determined to not start on hard pain medication because he says he wants to stay as lucid as he can. While I believe that he is in severe pain, he does not express it to us. While he can barely talk, he is still adament that he will live until Tuesday.

My dad's feet started swelling up today and his belly is very large. Everywhere else he is basically bones because he lost so much weight due to the cancer. I know this is hard to discuss, but can anyone share the last few days of your loved one's life? I am trying to get as much information as possible to look for signs and prepare myself. My dad has refused all hospice care and it is just me and my mom at home taking care of my dad.

Re: End stage- please help

Hana.....Hospice care also is called "Comfort Care."  I am wondering whether you might be able to speak with your local hospice representative explaining your Dad's reluctance of using their services.  They have access to different medications and might find a way of limiting the pain enough for your Dad to still be cohesive.  You have a few days until the wedding and are able to try different prescriptions which you may cut back on a few hours before your wedding services.
I am thinking of you and sending many hugs your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: End stage- please help

Dear Hana,

I am very sorry to hear what you and your dad are going through right now. I went through this last year with my dad so I know how hard it is and what you are going through right now. Like you, I hate cancer and what it did to my dad, and as you say, both you and my dad did not deserve this.

I can't help you with your question regarding your dads pain patches as my dad never had those. When hospice stopped the majority of his meds, he was still getting his pain and anti nausea meds through a syringe driver that was topped up as and when required. He was also getting pain killing injections as and when required and this seemed to work. I do hope that you can get some sort of pain meds for your dad that work for him. As far as hospice care for my dad went, I have nothing but good things to say about this. All of his nurses and doctors took the best possible care of my dad and nothing was too much trouble for them, and he was made as comfortable as was possible.

I posted quite a bit about my dads last days and his time in the hospice. Here is a link if you want to read about them. Please feel free to ask me anything specific and I will help if I can.

http://www.cholangiocarcinoma.org/punbb … hp?id=3623

We know how tough a time this is for you right now, so please feel free to come back here as much as you want.

I will keep you, your dad and all of your family in my close thoughts.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: End stage- please help

Hana - I am so very sorry for what you are going through - my Dad is also fighting this terrible cancer and we don't know how long he has left.  We hope for months, but it's so hard to tell.  He was diagnosed in January and was not a candidate for surgery.

I would have your wedding - it is obviously very important to him, and it sounds as though he is fighting to be here for you in that moment.  Should something happen beforehand, know that he will be with you, watching you say your vows... even if you are only surrounded by your closest family, it seems that the wedding is something he needs to know will not be cancelled, and I think it's important to keep that promise for him.

If he makes it until then, may I suggest getting a video of the wedding and watching it with him since he won't be able to be there in person?  It would be a very special moment for the 2 of you to share.  I believe that seeing his daughter get married will give him so much peace for his journey... it's a very important moment for a Dad to know that his daugthers are okay... one thing I learned from my own father.

Please know that I, along with many others, will have you, your father, and your family in our prayers and thoughts tonight.

Jen

Re: End stage- please help

Hana,the patches are slow release so try the 1 and a half.He probably needs something short acting as a breakthrough.You really need the hospice care even if it is for support and advice only,try and get it organized explaining your fathers reluctance but filling them in on the situation.I dont know how it works in Korea as I am in Australia but hospice care is about family as well as the patient.If you have had contact with them it will be easier if things change and you need urgent support.
I wish you well with your wedding plans                      Janet

Re: End stage- please help

Thank you all for such wonderful words of encouragement. We just cancelled our wedding but we decided to do a small ceremony infront of my dad at home this Friday in 2 days. My fiance, a wonderful, loving man is flying in from Boston as we speak to see my dad before he leaves to heaven. We still have not told him that we cancelled Tuesday's wedding. It would just be too difficult for all of us to go through and I am afraid that even if he makes it to next Tuesday, I can't get married worrying that my dad may pass away and I won't be by his bedside.. we are too scared to break the news to him yet because we don't want him to stop fighting. It seems like he is in a mission now to make it till then. While he can barely talk, he says every morning "Day 6" and is counting down the days to my wedding.

I know he is in severe pain but he does not like to show it. He can barely talk although he tries so hard to concetrate and talk. It is unimaginable that even a week ago, while he was bed-ridden he had no problem talking to us and was quite chatty. It seems like everything happend over night. All of a sudden, he can't eat, drink water, and unable to walk and talk. I love him so much and maybe I am being selfish but  I just am not ready to lose him just yet.

Re: End stage- please help

Hana,your dad sounds such a nice man!What a difficult time for you all,but this is how life is,it just rolls on!Your dad sounds like he hasnt got much time left  so say everything you need to and make this time as special as you can,I have been through a similar time too.Good luck Hana              Janet

Re: End stage- please help

Hana,
I wrote many posts before my Mom died.  We were with her at the end and she died a very peaceful death.  You can use the search engine above to find my posts under the screen name Cherbourg. 

We used a patch with my mom called fentenyl  (sp).  We also had several other short acting drugs for breakthrough pain.  I am a firm believer in hospice care as well.

If possible have the service at your Dad's bedside.  You are his loving daughter and he wants to share this most important time with you.  He sounds like an amazing man and he will leave the most amazing legacy in you his beloved daughter.  I am praying for all of you.  keep the faith....

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: End stage- please help

Hana, I am so happy that you decided to have your ceremony in front of your father!!  I always say a wedding does not make a marriage and from the sound of things you and your fiance are going to make a wonderful marriage.
I know this is a very hard time for you and you are an excellent daughter and will always know that you granted your father his biggest wish.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: End stage- please help

I love that you are going to have a ceremony at your Dad's bedside - a beautiful idea.  I hope that he doesn't suffer during the time he has left, and finds pain control that works for him.

Thinking and praying for you and your family.

Jen

Re: End stage- please help

My father passed away on June 5th, a day after my wedding ceremony at my Dad's bedside. It was a beautiful event and my dad even though so weak and in pain smiled and cheered for us. He even managed to clap his hands as we walked in! He passed away exactly 30 hours later. I firmly believe that a person chooses the time when he decides to leave this world. In fact, after the ceremony, he told us that he can now leave this world peacefully and said he has reached his limit. He then turned to my fiance and told him "I trust you".
The end happend rather abruptly. I was so fortunate to be with him until the very end. He even managed to crack a little joke 15 minutes prior to his passing. The last two days before his death, his breathing was very heavy on and off. His mouth was very dry but he managed to drink water even minutes prior to his death. He was unable to go to the bathroom for about a day and he kept wanting to go but couldn't. He kept complaining of back pain because he was always lieing down so we tried to move him around a little. All of a sudden, his eyes rolled backwards and we could tell that we were losing him. And within seconds he was gone. Just like that.

I think every case is different and every person has their own unqiue experience at the end. My father while very tired and weak was had a 100% cohesive mind until the very end. My dad wanted to die in dignity and this he did. He stayed very sharp and responded to us even the last hour of his death. We did notice something different on his last day. Usually he had his eyes closed all the time during the last few days. But after my wedding ceremony by his bedside, that whole day, his eyes remained open. He stared out into the window and into the sky for hours the very last day and didn't want us to leave his side which was a little unusual of him. He was in so much pain at the end but it was only on the last day that he started taking oral pain medicine. He was on the patch for about a month. I hope this information is helpful to those looking for what is in the end stage. Again, every patient's experience is very unique. Just be with him or her and talk. I told my dad everything i have always wanted to say in the last few weeks of taking care of him. Nothing was left unsaid.

Re: End stage- please help

Hello Hana and Congratulations on now being a Mrs. Hana. What a wonderful story about your father being able to attend the wedding. And now he will watch over you for eternity. You are a very giving and loving daughter and he was lucky to have you help him on this unfortunate journey. Wishing you all the good health and happiness as your future unrolls before you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: End stage- please help

Hi Hana,

Your post tho' sad is also wonderful.  I am glad things worked out as they did.  Now your Dad has moved on and is no longer in pain or suffering.  He will be with all of you forever in your hearts and memories.  Wishing you the best in the future.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: End stage- please help

Hana,

Congratulations on your marriage and I am happy to hear that your dad was able to be there to watch you get married. I know he must have been a very proud man indeed.

I am sorry to hear of his passing, but I am glad that you were able to be there beside him during his last hours. I spend my dads last hours beside him throughout and I know how important that was to me to be there with dad when he needed me.

My thoughts are with you and your family right now.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.