musichelps

Hello and thank you so much for existing. For having the selfless idea of providing resources, information, countless hours of your time and loving compassion.
For the three or so days spent awaiting registration, I have read many pages of text.
My 78 year mother was diagnosed last Friday with ICC, intrahepatic cholangiocarcinoma, the rarest of the rare. Her heart specialist thinks it is inoperable, her GP told me to gather the family around and spend quality time with her. I, like most people I suppose that find themselves here, coped by reading and reading , between crying by myself and perfecting chicken stock and working and husband and kids and life. Tomorrow we see the surgeon, Simon Banting, head of GI surgery at St Vincent’s Private, Melbourne. Thanks very much to you all I am armed with questions.
I wanted to point out some of mums seeming differences in the many common symptoms I’ve been reading about:
Symptoms that got us to a doctor:
Lack of energy and appetite, two bouts of severe vomiting, running hot and cold, very little food for nearly three weeks. But from reading I think that the little ‘dots/brown rash’ that she discovered on her forehead around the hairline and then around the back of her head, 6ish months ago, were the first symtpoms. They were not itchy. They were not really noticeable. She went to skin specialist whom she described as useless and her GP put her on antibiotics. I feel this could be possibly significant for future, early diagnosis. I’ve read of people describing incredible itching though and my mum had no itchiness.
The other very fortunate thing is that she has no pain. From descriptions here she seems to fit both stage 2 and 4.
What she has:
She has 4/5 tumors around 12x9mm in the duct and one or two liver segments. I assume this is metastasized. She has not been jaundiced at all. She is otherwise in good health, has booked and paid for her trip to England in September to visit friends and study at Cambridge for a week. She has atrial fibrillation but it is controlled. She had a stroke 6 years ago and has mild aphasia. She is an athiest and has worked for the good of people her whole life.
I’ve read what I have written and i seem very matter of fact. I oscillate. I am screaming on the inside, why? No! How cruel! Just horribly unfair. I am not ready but I know I never will be. But my shock and grief is turning to reality. She is alive right now. Let’s sort this %#^% out best we can.
Just thank you for being here. And my heart goes to everyone who has braved this battle before me and who is currently in the nightmare. Thank you for sharing, it has helped me very much indeed.
And apologies because I am sure I have posted in the wrong place and I have no idea how to post in the right place…hoping someone may find me!