1 (edited by angiem Sat, 23 Feb 2013 00:40:39)

Topic: New Member

Hello Everyone,

I first visited this site back in July of 2010 when my dad was first diagnosed with Cholangiocarcinoma. I have since visited the site a couple of times and I finally decided to write.... My dad is still alive  but he is in the final stage of his cancer. It has been a difficult road but especially these past three months. My dad is currently in hospice care they visit him 3 times a week.

On November 18, 2012 after several hospitalizations his cancer Dr. told us there was nothing else that he could do for my dad. His cancer has metastasized in the Hilum of the liver. He has very bad ascites and has to be drained on a daily basis now, he has a plurex catheter so he does not have to be poked each time. The Plurex catheter was placed after he had internal bleeding after one of the paracentesis,  he was on a blood thinner for a blood clot in the liver due to the TIPS procedure.

He has lost a lot of weight but he is sooo swollen from his belly down to his toes it is truly heart breaking to see him go through this yet he is the one who gives me the strength to be strong for him!

My heart goes out to everyone who is and has gone through this with a loved one.

Angie

Re: New Member

Dearest Angie I want to welcome you to our extraordinary family but say I am sorry aboutr your Dad. Where are you in AZ? I am in Gilbert! Where is Dad in Hospice, here? I can only wish that your Dad is comfortable for his journey and he finds his peace. If you feel the need to talk please don't hesitate to call upon me, we all truly care and you are NOT alone!

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: New Member

Hello Angie,
You are not alone.  My heart goes out to you.  My 31 year old son is experiencing almost exactly the same issues as your Dad.  He is not on blood thinner but he is scheduled for the Plurex catheter to be placed on Tuesday.  He has been "drained" twice in as many weeks and it is very difficult for him to bounce back.  I agree, the weight loss and extreme thinness are heartbreaking constant visuals.  I don't know if this will help you but it did me........I have been angry that first of all this has happened to my child and secondly that it plays out so cruelly in the end stages.  But a couple of days ago my son was sleeping and while watching him I found myself wishing (with all my might) that he would pass, right then right at that moment!  It was then I realized it would be much harder to lose my son while he was feeling great, looking great, laughing and enjoying.  FOR HIM I want peace and no more pain.  My hurt and longing for him will be forever, but my wish for him to be free of this diseased body and to go on with his journey is strong.  In other words I will be happy FOR HIM when he passes.  I will eventually be strong enough to honor his short but wonderful life!

Re: New Member

NotDoneYet, I am reading your post with tears, not of sadness but of the Peace you are finding and want to find for your son. It is exactly how I felt about Teddy. I believe there comes a time when the most unselfish event ever in our lives is to let go for the good. You are amazing and your different twist on this is most welcome. Are you using Hospice yet? If you ever need to talk I am here! If you don't mind...I wrote the following poem about Teddy a week before he passed......it helped me.

Time is growing closer, I can see it in his eyes,
Time is growing closer, but we’ll have no sad ‘goodbyes’.
Memories abound from our precious moments spent,
To God it is, I’m sending, the most “precious” package sent.

These last few months of knowing, we’ve made a honeymoon,
In my mind a vision of an eternal, beautiful afternoon.
He is still my charming Prince, who taught me how to love,
And someday we’ll be together, in Heaven up above.

I will see him riding stars, I will see him in the moon,
And someday you will see us dancing to our favorite tune.
He will touch my face so gently, like he’s known to do,
It’s not goodbye forever, with memories bad or few.

All our love, my sweet one, is ours to hold so tight,
Until once again together on a mystical, magic night,
We will be again united to celebrate our dance around the sun,
And know that our eternity together, has only just begun.

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.

5 (edited by PCL1029 Sat, 23 Feb 2013 07:57:56)

Re: New Member

Hi, Angie,

Even you are joining us here the 1st time now and may be the final time ,but you are appreciated by your courage to do so.
I am sorry for your father's disease suffering and emotional toll upon you and others who are caregivers to the patient.
Sometimes I do not understand a lot of emotional related questions that I had asked myself ;deep down I like most of you,even I am alive,I am still scare about the final journey of this disease. I may be looking strong now, but I may be  worst at the end of the journey. Even I try to be positive and  to find a better drug or regimen to less the suffering of all of us; In reality a miracle cure is still a long way to go and may only extend the disease free period for a relatively  long time in months instead of years like the new drug approved by FDA,the TDM-1 for the breast cancer patient  yesterday.

But my point is, letting go like the above member suggested  may be one of the best solution for both the patient and caregiver at the end stage of this disease. It is quality over quantity of life for the patient as well as for the caregivers. So do not feel sorry for yourself and your dad.

With deep sympathy, as a patient  now and a caregiver before; may I wish you peace and comfort during the rest of the journey knowing that as a faithful daughter, with God's help, you have tried your best, and for that, your heart and mind will be at peace with the outcome.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

Hi, Notdoneyet,

FOR HIM I want peace and no more pain.  My hurt and longing for him will be forever, but my wish for him to be free of this diseased body and to go on with his journey is strong. .What a loving and thoughtful statement that requires courage,knowledge, and heart-searching emotional effort to say so.
I admire your  unselfish love for your son.
May the Love of Jesus, The Grace of God, and the Fellowship of the Holy spirit be with you always.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

Dear Angie and Notdoneyet,

I am so sorry for what you and your father and son are having to endure. My daughter is only 26 and has CC as well. She has had the good fortune of being fairly healthy so far, but if she got to the point where she was suffering every day, I think I would feel the same way you do, Notdoneyet. I couldn't bear to see her suffer and in pain. My wish is for your father and son to be comfortable and pain free during this difficult time. Bless you both.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New Member

Thank you for your replies.

It is so nice to read everyone's replies and outlook on things I definitely needed this!

I live in Glendale, Arizona my dad is with Hospice of the Valley. My parents are only a couple of miles away. My mom is his main caregiver and we are seeing the toll it has taken on her we are 5 siblings and we are all doing what we can to help my mom my dad is 62 years. He was such a strong and hard working man, now he is so weak and fragile....

These last three months have been a roller coaster of emotions. Although I know we all have to go sometime its not easy to think you wont be able to hug him, have the BBQ's that he loved, he prepped our turkey for Thanksgiving dinner every year!  I do understand that when he is ready to go he will leave us,  I have seeing him fight this battle so hard. I only want him to have peace and no more pain.

These last couple of days he has been very restless and experiencing a little more pain, he is still eating not a lot though. My mom has had to give him more pain med and anxiety medication to help him keep calm and free of pain. For sometime now he has had this glossy look in his eyes where he stares and it seems as if hes looking right pass you. Its so scary to see those changes in him.

Family is a great support system (mom, siblings, spouses) outside family can be hard to deal with at times. As they cannot understand how there is no more treatment options avail. I have tried to educate them but I sometimes  feel like I go in circles with them!!!

Again thank your kind words and support it has been much needed.

Angie

Re: New Member

Angie, PLEASE call me, I am in Gilbert and we need to talk. 480 896-0974 My husband was right where your Dad is......

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: New Member

I will definitely call you...is there a good time? I am going to get ready to visit my dad and drain the fluid...He likes to have it done early he keeps us in check if we don't follow his schedule! I love that about him more now than ever before...

Angie

Re: New Member

Anytime. I am home recuping from 2 weeks in the Hospital with Ulcerated Colitis. If you can put up with my weakened voice we really need to talk about pain comtrol and a few other things that I hope will really help. Looking forward to the call.

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: New Member

Notdoneyet,

I am so sorry for what you are going thru as well. It is extremely difficult to see them go thru this. Enjoy all those good days where he is strong and feeling good! They are amazing strong people and we have been blessed to have them in our life's until they are ready to leave.

I just wanted to say I have been there many times in these last few months. As my dad has had up and down days, I have felt so guilty for asking God to please give him his peace and end his journey if he cannot be healed. Then he bounces right back with all this energy and we are truly blessed to have another precious day with him.

I was wondering why are they doing the Plurex catheter on your son at this time?

If you need to talk please I am here as well.

Angie

Re: New Member

Hi Angie and Hi notdoneyet,

Angie I am very sorry to read about your dad.  As you've discovered, there is so much support from the members here- it still blows me away. Please come back and let us know how your dad and you are. 

Notdoneyet: there are so many wrongs with this disease but knowing that my parents are having to watch their daughter suffer is particularly hard for me.  Your selflessness and love for your son shines through.

Clare

In the stars now . . . .

Re: New Member

Dear Angie,

Welcome to the site. Although I am sorry that you had to find us all and I am very sorry indeed to hear about your dad. I know how you feel and what you are going through right now as my dad spent the last part of his fight in hospice care as well. This is such a tough time for you right now and I wish you every strength as you go through this.

Please do not feel guilty about anything at all. You are doing everything you can for your dad right now and I know how much you being there with him will mean to him. At this stage, my dad had up days and down day like your dad is having and all I can say is to make the most of the good days. Talk, spend as much time as you can with him and treasure each moment. I will never forget these days I spent with my dad.

Please know that we are all here for you. Keep coming back here, talk, shout, vent or even scream if you like, we know how you feel.

My best wishes to you and your dad,

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: New Member

Dearest Angie and NotDoneYet,

I am reading your notes with a deep sadness for your situations but also
admiration for your insights.  You've so eloquently said what many have felt.

I am so very sorry for what your son and father are going through and also what you must be experiencing as well.

I feel incredibly honored that you shared your stories here with us.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New Member

Angi and Notdoneyet....Of all the all the good things life brings - love is the greates of all.
My heart is with you in this so precious of time.
Hugs and love,
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: New Member

Thank you ALL for your kind words.  My son is on Hospice here at home.  They are always available by phone and are ensuring we have all meds we need for his comfort.  Our family doctor has been closely involved since the beginning and has made himself available to us and Hospice 24/7.  He has been our Doc since my sons were very young and when I watch his face I know this is very difficult for him also.  Again, Thank You all for your support and kindness to every person who reaches out.  Best wishes to all in their own battle and here's to more Victors!

Re: New Member

Dear Notdoneyet and Angie,
So sad you are at this point and having to watch your beloved son and father decline. Your words have actually helped ME to cope with the guilty feelings of wishing my father would pass soon rather than continue on for years with the physical and mental ravages of Alzheimer's (he is 89 and has lived a full life). You are amazing in how you love your son and father enough to let them go FOR THEM. Bless you. Willow

Willow