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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 10
Hello everyone. Just a little note to let you know that my Mum slipped away peacefully this weekend aged 79, 9 months after being diagnosed. I wanted others to know that she declined chemotherapy and as a result had fantastic quality of life until her last month. She was able to control her pain with just paracetamol and it was only in the last 3 weeks that we had to use oral morphine and sickness medication. She did have a steep decline in the last month with rapid weight loss, but died where she wanted to, at home, and it was a privilege to be with her at the end. A month before she died, we had an extraordinary reunion with her long lost daughter who was adopted before she married my Dad - so she has left me the great gift of a lovely new big sister. Thank you to everyone who supported me on this forum - it's a fantastic source of information.
Thanks everyone for your kind messages. Hospice and district nurses are helping best they can. I will ask about a patch as pills are getting tricky. Mum is seeing her brother from Spain today, a person she has longed to see since she got diagnosed. I will post as and when I get news x
Dear Lainy, I very much appreciate your reply. I would be interested to read the list of signs you mention - it is stuff that noone talks about and we need to know. It's not a journey any of our family have been on before. If you need me to send you my email I can, or maybe you have some way you can do that without me posting my email here. I will keep you updated on how things go.
Hello. It's a long time since I posted. My Mum (79) was diagnosed in March of this year. She was told by docs she probably only had months to live and opted not to have chemo (having nursed her sister through same situation). She came to live with me and my family and had 7 months of good quality of life, eating more or less what she liked, no sickness, little pain. She's had a sudden recent drastic decline and I just wanted a little advice. She has suddenly lost a lot of weight, and is extremely weak and tired. Last week, we really thought she was nearing the end of her journey. The decline happened after an amazing reunion with a long lost daughter who she gave up for adoption in 1960, and who had spent 13 years trying to trace Mum. She came all the way from New Zealand to meet Mum in the UK. It has been very emotional for all of us, but especially Mum. I'm sure it's no coincidence she has declined now - she was hardly sleeping in the weeks leading up to the visit. For a week after the visit, she hardly ate at all, in fact, we were even struggling to get her to drink. After about 10 days of this pattern, she is now eating very small amounts, but generally vomiting a little after eating. She is on anti-nausea pills. She is pretty much bed ridden at the moment so it's hard to get her to sit up to eat even. Any advice much appreciated. What a roller coaster this is.
Many thanks for your reply Gavin. Mum's stent is a metal one. They had quite a job fitting it - failed the first time, and it was tricky but they managed it second time. I really appreciate all the replies - I will keep you posted on her progress. Sam
Thanks for all your replies. Mum is 79. As she's moved in with us now, we are about to move all her care arrangements like Macmillan and hospice to here in Bath, as all her support is set up at her home in Kent. We haven't needed any external support so far - just our local GP who has her signed on as temporary resident. Mum's not pressing for a second opinion on her diagnosis - I just wondered if her experience was par for the course. May I ask Gavin how long your Dad was OK after the stent was fitted? Mum's consultant seemed to suggest it would be OK unless it became blocked.
I think my Mum's positive attitude is helping enormously. She's always been someone who is able to live in the present and not worry about the future and it's coming to her aid now!
Hello all. Just a little update on my Mum's current health. She was diagnosed in March (although I think docs knew as early as Feb we were looking at Cholangiocarcinoma), and has had a stent fitted. The cancer is inoperable and she doesn't want chemo. Since recovering from the stent fitting she's gone from strength to strength and we are amazed at what she is able to eat. It's always small amounts but she appears to be able to eat pretty much anything. We were weighing her regularly, but have stopped as we felt it was counter-productive as she was getting really tense if she had lost weight. She isn't experiencing much pain (all controllable with paracetamol). I am delighted she's doing so well but also confused as her experience doesn't seem to tally up with many of the stories here. The doctor basically told her she had months to live. Should we seek a second opinion, or is this simply the calm before the storm? She's living with us now and we're just trying to make the most of every day we have with her.
Thanks so much for all the supportive messages. We haven't yet got a Macmillan nurse assigned to us, but I'm sure we will in due course as I hear they are brilliant. The Hospice where she lives are also fantastic so I know we've got great people waiting in the wings to help when needed. I'll try to post when I can to let you lovely people know how she's getting on, but my good news this morning was she hasn't lost any weight in the last week!
Thanks for your kind words Marion. It's a metal stent so we will keep our fingers crossed it keeps working. The consultant said they sometimes get blocked and might need draining but all going well so far. She has taken the news of her illness so well, especially having seen her sister through to the end.
Hello everyone. My dear Mum, who will be 79 next week, was diagnosed with cholangiocarcinoma in March. She has had a stent fitted, which they only managed on the second attempt. Docs have told us it is inoperable and any chemo offered would be palliative only. My Mum nursed her sister through cancer of the gall bladder/liver and having seen her very poorly on chemo has decided not to go ahead with it herself. She is in good spirits, not in much pain (controllable with just paracetamol), eating small amounts, the stent working fine so far. She was seriously jaundiced before this was done.
Just wanted to get a little advice on what we can expect on the journey ahead. Apart from her weight loss and general tiredness/lack of energy, it's sometimes hard to believe she has cancer. They have said she likely had months to live (not as much as a year) and this is the hardest thing to deal with - she keeps wondering, how long does she have? We have simply surrrounded her with love and are trying to make the most of each precious day with have left with her.
Posts found: 10
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