cholangiocarcinoma
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thnx hun, for ur reply, it is a stint my mum is aving put in t mz, so do u no how that works plz, n how she will feel.
Carolann – I see that you’re in the UK and already the UK people have gotten right on track, giving you the information you need. I’m in the US so couldn’t help you with that stuff – I’m so glad there are such knowledgeable and helpful people on this board who CAN help you with all the practical details. I should have realized you were in the UK since it was 5 in the morning here! I just can’t sleep since my mother passed.
Anyway, keep in mind that everyone’s case is different with this horrible cancer. Some people live only 2 months – like my mother – and some people live 8 years or more after diagnosis (there are a few miracle stories on this forum, lots of people still going after years, especially if they’re young when diagnosed). The doctors tell everyone they have a year, maybe 2, and everyone’s different. If they’re putting a stent in her bile duct so that it’s not blocked, that seems to work wonders for many people and gives them a lot more time and a lot more quality of life. Right now you still have hope – so cling on to that or you’ll go crazy!
Best of luck and sorry I didn’t respond sooner, but I had to go to bed eventually- Joyce
thnk u terressa, thats helped alot, feel much calmer. sorry bout ur loss, hope theres a light at the end of the tunnel.
thnku so much kate, im trying to get as much help n information i can get, its a pretty numb moment for us all, the more i no bout the disease the better i think i will feel, its not knowin things that makes it harder to cope with. good luck bestwishes.
Carolann! I am sorry you are having such a hard time! Please ask your Mum’s GP to get her refered to a Professor Peter Lodge in Leeds! He can’t help MY Mum, but he may be able to help yours! I have been told MANY times that he is THE MAN to see if you are in UK, and lucky you, he is not far away! Several people on this site have had dealings with him, and he is very experienced in CC…………
You can call his Secretary direct on 0113 2064890 if you want to ask her how to go about getting a referal.
The address for your Mum’s Gp to write the referal to is
FAO Professor Lodges Secretary
GRound Floor Lincoln Wing
St.James Hospital
Beckett Street
Leeds LS9 7TF.The lady was very helpful when I spoke to her.
I so relate to your panic and fear! I aws the same when my Mum was diagnosed a year ago!
Best wishes to both of you.Hya Carolann Just read your mail.
So sorry about your mom.
However. I am in Birmingham and lost my son.
Like jmoneypenny advise that you get as much information of this site as you are
able at this time. If need be get second or even third opinions but make sure the docs and you have as much information as possible. Some on this site have spoke about a prof. lodge at leeds. ?
I found that my biggest concern with alan was how to stop him losing the weight that he had so quickly. There are lots of threads on here about food and vitamins etc.At the time alan was so ill I offered to pay for some scans etc but was advised not to do this by the hospital. I now wished we had gone ahead and got them much quicker
as time was of the essence.
If you need to speak or mail someone please feel free to contact me by mail and I will give you my number and help in any way possible. All of my best wishes go to you and yours.
love and light Alans Momthnx so much j mneypenny where located s yorks, shes at sheffield at the moment, were not getting to find out much of wots happening the only thing we no is that shes going into theatre fri to av bile duct stretched n sumthing out in. then there letting her home.
Thanks, Carolann. Your mother is very young so there may still be some hope!! Where are you located? Some hospitals and doctors aren’t familiar with the disease and you may have more of a chance if you get to a place where they may have more options, especially if it hasn’t spread. But I know there’s only so much you can do – so don’t wear yourself down! I’m here to talk if you ever need it.
thnx for ur reply, she got told there is no cure, n she cant av surgery, althought she may b able to av chemo,its the initial shock that devastates,i av spent the past wk by her side now she as been transfered hospitals, makes it harder to visit, i feel so helpless, will keep the site updated with the progress, n hopefully look up to the future, sorry to hear bout ur loss too.
Carolann, I just lost my mother to this and also feel so alone in the world – my heart goes out to you. Just know that there is always hope. She was just diagnosed so you don’t know the full details yet – find out if she can get surgery, or chemo, or get more opinions if the doctors aren’t coming up with anything. Some people respond amazingly well with treatment. You just have to make sure the docs are on top of it.
But most of all, show her your love and spend every precious minute with her. It’s hard to pretend to be strong – I know – so give yourself time to cry and cry when she’s not around – and even when she is. I think sometimes I was too strong for my mother and she needed me to cry with her.
cneely7 wrote:carolann-feel free to contact me with any questions or concerns you may have.Chris
thank u so much glad i got sum 1 to tlk to about it.
they havent sed how progressed the tumour is they sed they cant say, it was yesterday we got the news, and took it really bad, although she as picked up with the eating now. im trying to stay strong for the family, its not easy.
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