Cholangiocarcinoma and my mother
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Nidhi,
I am so sorry for your loss. It must have been a difficult couple of months for everyone involved. Remember we are all here for you if you need us.Kris
Dear All,
Thanks for the constant support and encouragement through my difficult times. I pray to God for a better tomorrow for everyone.
Take care
NidhiNidhi,
I can feel the pain in your voice and I am so sorry for your loss. You are right to call this cruel, I have said many times before that this disease really hits so hard and swiftly that those who are left behind can barely comprehend what has happened.
Here is a link to an older post with a poem that has helped me immensely:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2690
I hope it can help you in dark moments as well.
Patty
Dear Nidhi, I’m so very sorry to hear of your mum’s passing. This will be such an incredibly painful time for you & you are very much in my thoughts. Please keep coming back for the love & support of this wonderful family. As Michelle says, we will get through this together.
Julia x
Hi Nidhi
I am so sorry for the loss of your dearest mom, my dad passed just 2 days before on the 4th of October, i understand how difficult this is – my thoughts and prayers are with you all, give your girls a big hug from me, i also have 2 boys who are a similar age.
This is a tough journey, we will get through it together.
I wish you peace and love and strength.
xx
Michelle
Hello everyone,
Really don’t know what to write. My mother succumbed to CC on 6th October. Past one month was a very difficult phase for her. She was on and off hospitals. Her condition was deteriorating at an alarming rate. No medication seemed right for her. She was a fighter throughout but for the last two days. She seemed to have reconciled to her fate. She wanted an end to her sufferings and it seems she willed for her end.
I’ve lost faith in God. She was such a pious lady. How could He be so cruel?
Dear Nidhi thank you for the update. I have a thought. What about an appointment to the doctor at which time you have him tell Mom what is happening? Your mom needs to help make her own decision on chemo or no chemo.
My husband said no chemo as he wanted quality of life for as long as he could.
There are too many decisions that have to be made and it is too much for 1 person to take on. Teddy is taking Compazine for nausea and it’s working great.
Good luck on it all and please do keep us updated.Hi Nidhi,
Glad to see you back here again and thank you for the update on your mum. Have the doctors said what they think is causing your mums pain? I hope that the Tramadol works and that they manage to get the pain under control. My dad used to take solpadols for his pain and that seemed to work for him.
As to the vomiting, this is something that my dad suffered with quite a lot and he took a variety of and combinations of meds to try and get this under control, all with varying levels of success. What I was told by a specialist cancer nurse is that any new medication can take some time to work and also that a combination may be needed. My dad tried Metacloprimide, Haloperidol and Buccastem. The Buccastem was a good one as he could take that pretty much when he needed it and it would dissolve under the tongue and so would not be ejected if he vomitted. Hopefully the Ondem will work for your mum.
I know that this is a tough time for you and your family, but you will find the strength needed to be there for your mum.
Best wishes to you and your mum,
Gavin
Nidhi,
I am so glad you can back to update us. I was worried I sounded too bossy. But like I have said before, this place is like a family and that means you get lots of opinions! but it also means you get alot of support and understand.I hope they get the pain under control. It is so hard to mentally prepare for anything when you are in pain. It is the easiest time to give up and go into yourself so this is when your mental strength and love for your mother needs to flow into her.
I have both primperan and ondem for vomiting. Both seem to work well for me so lets hope it is the same with your mother. If she continues to vomit and it appears the tablets cant be kept down long enough to work, you can ask her doctor to prescribe a suppository for vomiting.
Hope things improve.
Kris
Hello everyone. Thanx for the support and advise. Deep in my heart, I feel she has a right to know but I really don’t know how to break the news. Her condition is not well. She went for the chemo session but the doctors didn’t administer the dosage as she’s suffering acute abdominal pain. They have prescribed Tramadol for the pain. The pain is manageable due to the medication. Her frequency of vomitting has increased. Her appetite has gone down. She’s onto ondem for the vomittings. She’s been called again for review on thursday and maybe she’ll be adminisyered low dosage of chemo. We discussed with the doctors regarding PDT and Cyberknife treatment but they say it won’t work for her. Chemo has a success rate of about 25%-30%. After she completes 6-8 cycles she’ll be okay for another 5-6 months.
She stays with me. My kids aged 8 and 2 yrs love her a lot. My husband’s managing all the trips to the hospital. We all are there for her. Pls pray for her. Hopefully I’ll be able to gather enough srength to tell her the truth.
Thanx again.
Nidhi
Hi Nidhi,
Welcome to the site, although I am sorry that you had to find us all and I am sorry to hear about your mother. I too agree with everything that has been siad to you regarding your mothers right to know what is going on with her health. My dad was diagnosed back in 2008 and his CC was deemed inoperable. He had PDT as his treatment but he could have had chemo at the time should he have chosen it. The decision he took to go for PDT over the chemo was his to make and he made it based on all the information that he was given by the doctors. Had he not known the full extent of his illness then he would not have been able to make such an informed decision.
I know that none of this is easy to deal with and discuss. But I do believe that your mother has the right to know what is going on so that she can make the choices that she wants to. And as Kris says, there may things that your mum might want to say and decsions to be made by her as to how she wants to live her life. My dad had to make these same decisions about how to live the rest of his life after his diagnosis and that is why he chose PDT over chemo. Had he not had the full information then he would not have been able to make that decsion. Please do keep coming back here as we know what you are going through right now and we care.
My best wishes to you and your mother.
Gavin
Nidhi, I agree with Lainy and Kris. Give your mother her options and then let her make her own decisions. My father passed away about 5 years ago from COPD and related complications. No one really told him he had only a few months, but we got hospice for him so my mother didn’t have to strain with her illnesses to take care of him. He was 72. It wasn’t kept from him, we just assumed that his doctors told him. Then my mother said one day that she thought he didn’t know that he would not live for another year because of things that he was planning for.
We should have told him and will always regret not making him more aware of his condition. He awoke one morning, had some kind of a seizure, and went into a diabetic coma never coming out of it. I really believe he would have done things differently if he had known that he was terminal, or at least what his prognosis / diagnosis was. My son was just one month old, and I’m sure my father would have wanted things differently at home, or how he was spending his time, or who he might want to see, etc. We will never know, but giving them that CHOICE you will know that they will do what THEY want, no matter what that ends up being.
Good luck to you and your mother, and in making your decision.
Linda Z.
Dear Nidhi welcome to our wonderful family. I am very sorry to hear about your mother, but I totally agree with Kris. Your mother has every right to know everything and then if it is her wish not to disuss it, so be it. My husband is in Home Hospice and he has had a say in every part of his treatment for 5 years. We are very open about everything and I will never look back and say I regret anything I did. This is a very special time with lots of family and friends also taking part. It will also bring you a certain amount of comfort by not holding on to this most major decision of not telling her. Good luck.
Nidhi,
I truly believe that all patients have the right to know what is happening to them, to their bodies. Your mother has the right to decide her treatment path after she is given all the information. There may be things she NEEDS to do or say before she dies. By keeping this from her, she is being denied a chance to do the things she wants to do, say the things she wants to say and spend her time how she wants to spend it. Just because people are older, does not make them incapable of making decisions.I am terminal. I will die. Most likely soon. Yet I have hope. I will always have hope. Hope does not have to die when the facts are given. The doctor knows statistics, he knows what is most likely to happen, not what will happen. I hold onto that. I have seen wonderful things on this site as well as truly heartbreaking. Which path will your mother take? No one knows. Tell your mother the truth. This is what the doctors think, they dont know. Here are the statistics for chemo, but you are not a statistic.
Kris
Around 4 mths back, my mother, aged 65 years, was diagnosed with carcinoma of the gallbladder neck. The tumor is not resectable. Initially in May she underwent ERCP and a plastic stent was placed. It did’nt help. Now around 3 weeks back a metallic stent was placed. She’s fine, her jaundice, itching is okay. The doctor’s advised for chemo. Next week she’ll go in for chemo. Looking at her age and weight, which is around 41 Kgs (height around 5 feet) she’ll be given low dosage of chemo.
My mother doesn’t know she has cc. She thinks that everything’s fine now except for occasional fever. She just knows she’ll be getting some type of therapy to shrink the tumor so that surgery can be performed. Her life expectancy according to doctors is around 6-9 mths. I dont have the heart to tell her these details. Her hope is her strength. What to do? Pls. advise.
Nidhi
India
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