Advanced Cholangiocarcinoma; no treatment.
- This topic has 20 replies, 12 voices, and was last updated 8 years, 11 months ago by
.
-
Posts
-
Dear Christian,
I too, am sorry to hear of your mother’s passing. I am glad that she did not have much pain in the end, and I am happy you were able to spend this time with her. Thanks for the information about dehydration and the knowledge you shared to help others. Sending prayers your way for peace, strength, and comfort for you and your family.
MelindaDear Christian,
I am so very sorry indeed to hear of the passing of your dear Mum. Please accept my sincere condolences. I wish that I could help ease the pain that you feel right now and having lost my dad to this cancer as well I so know the pain that you feel.
Please know that we are all here for you and my thoughts are with you and your family right now.
Hugs,
Gavin
Christian,
I am so sorry to hear that your mum has passed. I’m sure it was heartbreaking for you. You sound like an amazing son and you did so much to ease your mum with love into her passing, which sounds like it was peaceful for her. I hope knowing you made it easier for her brings you some measure of comfort.
Thank you for sharing your mum’s update with us all.
Wishing you peace.
Debbie
Dear Christian,
I am also so very sorry to hear about your mum’s passing and what a struggle you’ve had for the last weeks. Your posts conveyed how much you loved her and I’m sure she was appreciative of all you did for her.
I regret that your family had to lose her to this disease, but please know that we are here for you and I hope in time, happy memories will give you comfort.
Take care of yourself,
CatherineDear Christian,
I am so sorry to learn that your mother has passed away. Also for what your mom and you went through these past few weeks. I am glad that in the end she passed peacefully with you by her side until the end. I’m sure as hard as this was for you she knew and appreciated the love and support you gave her and your respect for her wishes.
You and your family have my deepest sympathy. Yes, you are not alone. We are all here for you and also appreciate your offer of help and support to others.
Try to remember the good times and keep her with you forever in your heart and those memories. Take some comfort in knowing that she is no longer suffering and is at peace.
Hugs,
DarlaHi, everyone:
I apologize for going MIA, but things began to accelerate quickly after Christmas. Things with mum remained much the same, into hospital every couple of weeks or so. In mid-January, there was one night in particular where she went from acting normal, to completely delirious in a matter of a few hours, and her temperature soared. Ultimately, she collapsed to the floor unconscious, and was rushed to hospital, where I was told she was dehydrated to the point where they couldn’t get a pressure, and to make “the calls”. Her journey didn’t end there, though, 1 day and several litres of IV fluids and some antibiotics later, and she was a whole new woman.
I wanted to share this particular story, because if you are fighting this monster, or caring for someone that is, dehydration is a major issue. The doctors never offered it, but I lost my temper with them and asked “if you can hydrate her in hospital, why can’t we do this at home?” I found it ridiculous that three times she had been admitted to hospital dehydrated to the point of kidney failure only to be hydrated and sent on her way. There is an option, called hypodermoclysis which is a slow drip of saline subcutaneously. This, most likely prolonged my mother’s life by months, according to our home nurse. After we started hydrating her at home, she was never admitted to hospital again. From January through to mid-March, it was largely uneventful. She was basically “idling”, although her calories and fluid intake were reducing. Unfortunately, she did ultimately lose her battle on Good Friday, at home, in her bed, as she wanted.
Those last two weeks were probably the hardest of my life. She began to act irrationally, whether it was deciding to go outside at 3am in -23°C weather and slipping on ice, to being adamant that she was sitting on the commode chair, when in reality it was a dining room chair (she was SO angry with me when I kept trying to stop her from doing her business there). The physical decline was also drastic, I had to physically pick her up off the bed or couch and into the wheelchair, same on the commode chair, and in the end, remind her how to properly use the washroom facilities. The one incredible thing with this Cancer, at least in her case, was that she was pain free until 7 days before she died. Not once did she ever have pain, except for the occasional sharp pain, that she described “like gas”. I am so thankful for that. The final 3 days were quiet, as she slept constantly and no longer would accept food or water. I had to disconnect the hydration, as her thigh was swelling at the site, as she wasn’t processing it. And then, she slept her way to peace. My only regret, is that I didn’t take advantage of more of the palliative and hospice services. They would have come out and spent overnight so I could rest, but mum didn’t want that, and I listened. It did turn into a 24 hour job the last two weeks. In the end, though, I got to give back to the woman I loved so much, by giving her the best possible care I could, and making sure she got what she wanted.
Thank you so much to this community for providing endless information, support, and kindness. It meant so much to me to not feel alone during this horrible time. If I can be of any help to anyone else out there, please don’t hesitate to write.
-Christian
Christian….Cancer is tough not only on the patient but the caregiver as well. Take care of yourself, you deserve it. The below may give you some comfort:
Caregiver’s Bill of Rights
I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for just as if he/she was healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things for myself.
I have the right to get angry, be depressed, and express difficult feelings once in a while.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter is she/he knows they are doing it or not.)
I have the right to get considerations, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
I have the right to take pride in what I am doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
I have the right to protect my individuality. I also have the right to a life that will sustain me when my loved one no longer needs my full-time help.
Author unknown.
National Cancer Institute
Support for caregiversDuke, in reference to your concern, if it’s any consolation, my husband remained his same kind self throughout his time. Courage and bravery are the words that always come to my mind when I think of my husbands amazing and ceaseless fight. Take heart.
Wishing you many more Christmases.
MargaretChristian, if your Mum knew what you were going through emotionally as a Care giver it would upset her very much. As you know she cannot help it. One of the hardest things for me was when Teddy would ask for some scrambled eggs then keep apologizing as he could not eat them. This is a very hard emotional journey. Sometimes I would get in the car and leave for 20 minutes, put on my Mama Mia CD and sing loudly until my throat hurt. Of course I kept my car windows rolled up but I found this the best release for me. Went back home and was fine.
You are doing a good job and doing the right things but remember to take care of you as well!As a patient, this is one of my worst fears – that eventually things will deteriorate so much for me that I will hurt those I love who are trying so hard to help me. All I would hope for at that time is their understanding and that they remember the good times when I was myself. I’m sure that is what your mum would say if she could express herself fully. You summed it up – be strong and do the best you can.
Peace.
Duke
Hi, everyone:
Two things, first off the bat – I am sorry for not submitting anything or adding anything to other threads. Secondly, I apologise for not updating this one. Things have been crazy!
Mum was discharged from the hospital on December 2. She was fantastic on Dec. 2-4. I was completely unprepared for the emotional “bipolar” that was to occur. She had asked me to to go to Toronto on the December 6-7 to pick up some things for her. I agreed, and then an hour later, she attacked me for “taking off to the city for the weekend, when there were Christmas things to be taken care of.” Naturally, an argument happened. I am sharing this, because I hope anyone else going through this will realize this is normal. You can do everything right, and still wind up with an angry someone.
I didn’t go to the city, and stayed home. On December 7 , she began to run another fever. Once it got around 39°C (2 degrees over normal), I assembled and attached the external biliary drain (she has an internal one, but the external backup is to be put on when she runs a temperature.)
I don’t know what to think. She is back in hospital in Palliative Care – via Emergency. This was only 5 days since she was discharged. She started showing symptoms after only 3 days (she admitted that her attitude toward me and going to the city was because she was already feeling horrid).
Today when I visited her, she is so afraid that her Christmas shopping and events are getting behind. This will be her last Christmas, and she wants it to be perfect. It can’t be – she can’t stand the smell of turkey, being in busy places, or even walk much. This disease is vicious!
My heart goes out to anyone fighting this monster, or the caregivers like myself. The battle seems endless. As I sit here at home, a bottle of gin my my side, she is laying there in Emergency. I don’t want to lose my mum, but seeing her like this kills me. And, worse – Knowing it is untreatable and where this is going, I feel so powerless. Taking her in a tea, or fresh berries means so much to her, which makes me happy. But knowing it does NOTHING to change anything, saddens me beyond words.
May we all be strong, and do the best we can. That is my wish for all of us.
– Christian.
Dear Christian,
Hoping your mother was able to get some stabilization at the hospital and the cause of the fever was found and treated. Love your sense of humor! Keep it up…it helps! Hugs and prayers…MelindaChristian,
I can only agree with the others. Unfortunately this is common with this disease and the ups & downs are just the nature of CC. You definitely did the right thing. I know your mom understands and appreciates your concern, help and support. Let us know how things are going.
Hugs,
DarlaChristian
You sound like such a wonderful daughter, what a blessing you are to your Mother. Infection is common unfortunately. Sending prayers.
Peace
LisaDear Christian, infections are quite common with this monster CC. I am not being funny but I must say I so admire your Mum’s spirit! She is one woman who is going to call the shots! Bless her spunky attitude!
When you are ready, I have a list of signs that the end is nearing. Please email when and if you decide you would like a copy. Just click on my name to the left of my post and it will take you to a site email. My husband followed them pretty closely.
Hope Mum gets to go home soon and YES, you did all the right things!
- The forum ‘General Discussion’ is closed to new topics and replies.