Intro..mother of 47 yr old daughter with cc
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Betsy not everyone has the strength to be here. Some give it a try then feel it is not for them. I feel I could not ever have gotten through the 5 1/2 years with Teddy without this site to help and it was in its infancy then. I just had to pay it forward to thank them and got addicted. I just feel we have the bravest people along with being kind, loving and caring. Sometimes I feel CC is only for the strong. We are all very strong. Even the small stuff does not go unnoticed like I remember (OMG can’t think of the name) but her Dad was itching so much and she sent for a cream I had used for Teddy and an Uncle sent it from the USA to UK and it worked! I cannot tell you how good that made me feel. Yes, I do this for selfish reasons and if us Moderators can help it’s the best. I hope you sty with us and YES we DO understand!
To all of you….thank you for your compassion and tender words.
Even though I found you so late (I wonder why Paula did not tell me about you, nor continue her conversations with you) I feel more connection here than within our own circle of family and friends. I believe it is because of the understanding that is only possible with shared experience.I’m so sorry to hear about Paula but thankful she is no longer suffering. My prayers are with your family.
Take care,
Susie
Dear Betsy, I am so sorry to read about Paula. She is now healed and at Peace. You were lucky to have each other through this terrible Journey. Please accept my heartfelt condolences.
Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die. By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.Dear Betsy,
I am so very very sorry to hear of the passing of your dear Paula, please accept my sincere condolences. I so wish that right now there was something that I could do to help ease the pain that you feel. Please know that my thoughts are with you and your family.
Hugs,
Gavin
Dear Betsy,
I am so sorry to hear that Paula died on Monday. It must have been so difficult for you. But I’m sure having you there with her until the end meant everything to Paula. You are a strong woman. I hope, in time, happier memories can fill your mind and bring you some peace.
Please know you are in my prayers.
Peace & Love,
MaryDear Betsy, Please accept my sincere condolences on the loss of your daughter, Paula. Sincerely, Patricia
Oh Betsy,
I am so very sorry about your daughter. I am sure you gave her the comfort at the end that only a mother can give. I hope all of your wonderful the memories of your daughter fill your heart. There are no words.
Hugs,
-Randi-Dear Betsy,
You brave, remarkable woman. I am so sorry to that your daughter Paula has died – I can’t begin to imagine how difficult this is for you.
X
I am so sorry, dear Betsy. Your presence gave her comfort and peace My heart is with you and your family.
Hugs,
MarionAh, Betsy I am so sorry that your daughter lost her battle with this awful disease. It was great that you were able to be there for her through all of these last three years and to be with her in the very end.
Take heart that she will always be with you in spirit and rely on those good memories through the years to get through these times.
You and your family are in my thoughts and prayers.KrisV
On Monday, October 14, at 6:25, Paula breathed her last breath. She had spent a very rough weekend, with pain and agitation. She had a blockage high in her digestive tract. Whether stool or cancer, I don’t know. On Sunday for the first time in a while she vomited. Meds for nausea, pain, and anxiety were administered with apparent minimal relief. Night on-call hospice came two or three times. On very early Monday she began vomiting copious amounts of brown fluid. I believe it was liquid feces that could not exit her body in the normal way. Her meds were adjusted. She stopped talking. She was too weak to hold the sippy cup that we used for her water. Her mouth dropped open, her eyes were half closed and a bit rolled up. She did not respond to anything. I constantly had my hands on her, telling her she was beautiful, perfect in every way and that she was safe and would be fine. I thanked her for all the years of caring she gave other people and for teaching us to take care of one another and ourselves and assured her we would be fine. She moaned constantly, sometimes saying ‘mom’. The only time we heard other than moans was when she made a quip in response to something someone said. She experienced severe abdominal cramps and appeared to be comforted and worked with me when we did deep breathing together. The nurse suggested I call the family. When her daughters got there, the moaning stopped, but not her disappearance. This continued for several hours and I feared she would breathe raggedly and be in pain for days. I was out of the room for a few minutes and felt the need to go back. When I walked in the nurses had raised her bed and were telling her I was not gone I was right there. I ran to her side, followed closely by her brother. I took her face in my hands and told her I was there and would not leave her. I asked her if she could look at me. To my amazement, her whole face made a movement that was reminiscent of a camera adjusting itself. She looked straight into my eyes with clarity and intelligence and held my gaze for 5 to 10 seconds and left without a sound.
Dearest Betsy,
I was so sorry to hear about the suffering your family has been going through. There has already been some very good suggestions and support given here and hopefully some of that advice has helped you.
I wonder what diagnostics were used to diagnose your daughter with ICC, did she ever have an actual biopsy done? To survive for three years with no treatment is remarkable, as someone else mentioned. That being said, there could be multiple reasons for your daughter’s anger and agitation, as also has been stated here.
Psychologically, she must be suffering greatly. She may feel depressed and hopeless, this often manifests in the lashing out at loved ones you describe. Although it is difficult to have endless patience, if she will allow you to give her physical affection, that is sometimes an extraordinary healer of the soul. Climb into her bed with her and hold hands while watching TV or listening to her favorite music….lay with your head on her pillow and talk about fun memories from when she was healthy (her daughter can do this too!)…if she enjoys massage, rub her hands or feet with lightly scented lotion. Sometimes when someone is dying they are so afraid and angry, people tend to shy away from them, but that only makes them feel more isolated, which exacerbates the bad feelings.
She may want to talk about what’s happening , or she may not, but the only way to know this is to ask her. You might start by saying, “Honey, you seem upset, and I can only imagine how you’re feeling…do you want to talk with me about what you’re thinking about?”
Physically, there could be many reasons why her personality has changed and she has become angry. As mentioned before, medications can often change personalities, patients can develop delirium (which may be intermittent or constant) which can make them confused or anxious, pain can cause lashing out and intolerance of others, poor liver function can cause lethargy and confusion, and lastly, although it’s rare for cholangiocarcinoma to metastasize to the brain, it is possible, and this could also cause changes.
If your daughter has been on the same regime of pain medications for a while, the latest studies show that something called ‘opioid rotation’ can be very effective. You can ask your palliative care (hospice) doctor about that, and if he is not aware of it, perhaps you can recontact your oncologist. Being on Hospice care should certainly not mean that you have NO options. Palliative care reaches far beyond just pain medication.
If your daughter is agitated and not like herself, she could be experiencing delirium, Haldol is a wonderful drug for this type of difficulty. If her belly is swollen and painful, perhaps they could tap it to remove some fluid, or put a drain in to keep the fluid to a minimum so she is comfortable and her breathing is relieved.
If she would agree, maybe someone spiritual, either through your church or through Hospice if you don’t have your own, could come to visit and talk with her. Many people are very fearful and have great despair at the end of life, they gain great comfort from having their sins forgiven, even symbolically, and talking to someone about faith and afterlife. She may need to talk about things that are uncomfortable to talk to her own family about.
Lastly, I would reiterate my advice about being especially careful to not shy away from her even though her words and actions may be rough for you to deal with. Do what you can to be physically present and loving, don’t forget to touch her and hold her hand, run a cool hand over her forehead or brush her hair for her.
I hope that this helps in some small way…my heart hurts for you all. God bless you. HeidiBetsy…..my heart goes out to you and your daughter. I am glad that you came to this site for support and for sharing your thoughts.
Heidi, one of our two volunteer nurses, specializes in palliative care issues. At present she is attending a conference at MD Anderson on behalf of the Cholangiocarcinoma Foundation however; I will e-mail to her your postings. Heidi may have some additional information to share with you.
In the meantime please know that we are here for you and that love is heading your way.
Hugs,
MarionBetsy,
I had intra hepatic cc and had a resection 2 1/2 years ago. I got my resection at UPMC followed by chemo and radiation at OHSU.
I met Paula before. We sat next to each other about 2 years ago in the infusion room. She was getting radiation and was at the infusion room for fluids. She is a nice lady and I’m so sorry to hear she is having such a difficult time. She posted on this site a few times. I knew she was stage IV and getting palliative treatment at the time I met her. I kind of assumed she had passed by now. I’m so sorry to hear about her current condition.Take care,
Susie
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