kelly
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I just wanted to thank you all for all of your information and support over the last few months. Mom lost her battle with cholangiocarcinoma this morning, 92 days after being diagnosed. She fought so hard and was so brave. She hung onto life until we were all in the room with her, and surrounded by my father and brother and myself, she took her last breath. She was 58 years old.
you do help Lainy. Everyone here does. Just knowing that you all understand the insanity of it all is comforting. My dad is 68. My mom just turned 58 two weeks ago. Thank you for all of your responses today. They live about ten minutes north of new haven Connecticut. I live about five minutes north of them. About an hour and a half from NYC. I had an appointment for her at Sloan when she was initially diagnosed. She and my father cancelled it because they didn’t want to go into the city. (even before she was sick they weren’t big on leaving their immediate surroundings). It’s extremely defeating to know that a world renowned hospital was an hour away and she opted not to go. I don’t know if she just doesn’t fully grasp how serious this is (they tell me I’m being dramatic) or if she does know, and just assumes nothing will help her and she doesn’t want to make things “difficult” on my father.
Hi. She actually hasn’t seen her oncologist since the first meeting with him. This is all information from the gi surgeon who placed her stents. I went to my general practitioner after moms last appointment for some advice on how to cope with my fathers mental health and his methods of coping as it’s taking quite a toll on me and my gp tol me that he had been recording all of the reports from the gi doctors and that he was ready to recommend hospice care. Tomorrow makes exactly two months from her original diagnosis. I knew this was an aggressive cancer but it’s been such a horrific whirlwind. I know when she hears “hospice care” it will devastate her even further as right now she still thinks once her pneumonia is cleared up that she will be getting chemo. My gp said that chemo at this point would likely do ultimate harm to her. I can’t even wrap my head around it all.
Hi everyone. Mom had her second set of stents placed. They unfortunately have not helped her jaundice. The gi dr who did the proceedure thinks that the tumor is higher than they initially thought. Mom developed pneumonia in the hospital after the proceedure and was there for a week and a half. She’s been home for about a week and a half now. She’s still on antibiotics for the pneumonia, but I spoke with her doctor on thursday by myself and things don’t look good. Her abdomen is very distended and initially they thought it was drainable but they suspect it is coming from the metastasis in the liver itself and therefore is not able to be drained. My father and brother do not seem to grasp what is going on with mom. They’ve heard the doctor say “no cure” but it’s almost like they think it’s diabetes, something able to be managed. Meanwhile mom is not eating much at all but is managing about one ensure shake a day and a piece of toast. She is very week and spends most of her time in bed. She is able to shower independently but becomes very tired very quickly. The gi doctor said before they recommend hospice care he will send her to yales smilow cancer center for another opinion. That’s where I’ve been trying to get her to go right along, if not Sloan Kettering. I can’t believe how quickly this has all happened. She is very uncomfortable now with the bloat as she is someone who was not a meaty person when she got sick. I don’t know how my father is going to react when he hears the word “hospice”. Or my brother for that matter. I’m hoping we are able to keep her at home and have nurses come into the house to keep her comfortable.
Hello all.
Mom is still refusing a second opinion. We met her oncologist last Friday and I already don’t like him. I hate to be negative but he just didn’t have answers to questions that he should have had. Instead of that being a red flag for mom, she was angry that I questioned the doctor. She’s going in to the hospital tonight to stay over to have her metal stents placed tomorrow. I was really hoping she would have gone for a second opinion before that. She had a pet scan and EKG this week as well. No results yet. She’s not eating well and says that even the ensure makes her feel too full. I hope to update more positively soon.
Jim, thank you. I think I will print your response and hand it to my mother. Hopefully seeing input from someone also fighting the fight will help her make a better choice. I am grateful for you and everyone who ha offered kind words and support.
I just got back to work from taking mom to meet with a gastroenterologist. He was much much (cannot say “much” enough) lighter in tone than the ominess tone shared by my families general practicioner. He checked mom out, asked questions about her medical history, and didn’t treat her like she was condemned. He thinks that the appointment at Sloan is good for a second opinion, I just have to hope that she changes her mind about going there. She isn’t keen on traveling there even though it is only two hours away. My dad is encouraging her to stay local in New Haven. I’m keeping the appointment for now just in case. She hasn’t even seen an oncologist yet. They’re going to do a rubbing biopsy tomorrow when we check her into the hospital for her stent. I’m just so thankful for today.
Thank you guys so much for being here. I really don’t even have words for how grateful I am to you and to my friends and my family.
This wasnt even an oncologist. This was my family’s general practicioner that did the cat scan on Friday and made the discovery. I had to go to him today because recently my BP has gone up and he wants to make sure it’s not from anything involving my kidneys. While I was leaving he came over to talk to me. He also said I shouldn’t be taking care of my father. (Mom takes care of him, he has athsma, emphysema/COPD etc) because I have my own life to live. My father is in poor health and almost 70. He can’t even operate the fax machine when I give him a number to fax her tests to, let alone begin to research facilities and doctors. My mother is the love of his life and I just can’t sit idley by and do nothing. I’ve been trying all day to get her in to see an oncologist familiar with this. The best I’ve gotten so far is an appointment next Tuesday at Sloan Kettering. But I’m trying desperately to find someone here (Connecticut) who is familiar so we can take care of her jaundice. But for this person to say “no hope” without her having even seen another person knocked the wind out of me. I apologize that this sounds raving, I’d just like for someone with more knowledge to see her.
I went to the doctor today for my own renal sonogram (blood pressure issue) and while there my doctor asked me whether the CC of Penn had called. I said no, that I was looking into other options as well. He said “why Kelly, CC of Pennsylvania is where people go when there is no hope” I understand the severity of the diagnosis, which, by the way, is still from just a cat scan, and I understand there is no cure, but there has to always be hope. I just can accept that last Sunday my mother was seemingly fine and as of Friday there is no hope for her. I’ve been on the phone all day today trying to find doctors to meet with her. It hasn’t been an easy day and I know things stand to get much harder from here but to have him look at me and say “no hope” was the absolute worst thing I’ve ever heard in my life. I know denial is one of the stages, but I just cannot accept “no hope” until I try everything I can for her. Has anyone else had this happen and had the doctor be a bit premature in his verbage?
