Mum just been diagnosed
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Dear Lulu,
I feel your pain, and started my journey in August 2010. Make sure she goes to a major medical center and gets treatment/surgery as soon as possible if she is a candidate. Your story sounds awefully similiar to my own. I am always here if you want to talk.
ronidinkes@yahoo.com or you can find me on facebook.
Sending many hugs your way.
roniI am so pleased that your mom may have an opportunity for surgery and a great recovery. It is very scary and say all the things that are on your mind before surgery and then trust that she will come out just fine. Don’t miss the opportunity to say how much you love and appreciate each other, but then trust that we are not in control – God is. I pray for a successful surgery for your mum and that her recovery will be smooth and she will have many, many more years to celebrate her life.
Sending thoughts and prayers for success on Tuesday! Sounds like your mum has great doctors and is in great hands! Hugs. Nancy
Hi Mandy
Thanks for the update. It is great that your mum has got the chance to go for surgery as this really is the best option for CC. I will be thinking of you, your mum and your family on Tuesday. Do let us know how she gets on.
best wishes
Jemima
Mandy, your Mom should be thrilled she is a possible candidate for surgery, which is the best chance of a ‘cure’ from this horrible disease. I had a resection several years ago done by a wonderful surgeon in the US and have been clean so far. The surgery is a big one, but I survived it in spite of having several cardiac events during surgery. I was wide awake the next morning and talking to the doctor and others. There’s a point when you need to stop worrying and put your faith in God and the doctors.
Best of luck this week and let us know how it all goes.
Hi Mandy,
Thank you for letting us know what is happening with your mum. Please try to stay positive and know that we are all here for you. I will keep my fingers crossed for your mum and hope that the surgery goes well, and am sending your mum a ton of positive thoughts.
My best wishes to you and your mum,
Gavin
Dear Mandy PLEASE tell your Mom that while this is a big surgery it is NOT life threatening. You will be there when she wakes up and they will keep her pretty drugged up the first couple of days. It is scary to be on either end but it WILL be fine. Sending many prayers your way and please let us know how everything goes.
Hi Guys
Just a quick update, mum is being admitted into The Royal Surrey tomorrow (2nd May) and then her operation is on 3rd May.
They are going in laparascopically to start with and then they will decide whether they are going to perform her operation.
If they do they are going to remove her gall bladder, her bile duct and a large portion of her liver.
She is terrified, and when i saw her earlier she hugged me as though it was the last hug we were ever gonna share, i have to stay positive as i am not ready to lose her.
Mandy
Hi Lulu
Yes there is always hope. When mum was diagnosed last year I looked first on the internet and was totally sure that she would not be here today. However, 13 months on and she is doing really well. She is still at home and looking after herself and feeling well. She is not a candidate for surgery so has had chemo and will probably start again in a few weeks. She is now 78 years young !
It’s good that surgery is a possibility for your mum. Is she feeling better now that she has the drains in ?
I know that my mum couldn’t tell my brothers herself what was wrong with her. I think it would probably have made it all too real and even now she doesn’t discuss it with them. Since she lives alone I am the one who goes to all the appointments with her so it is easier for me to know what’s going on. Maybe it is all too new for your mum and stepdad and they just don’t know how to deal with it all.
I wish your mum the best of luck for the surgery.
and best wishes to you and your family
Jemima
Hi Jemima
I haven’t been to any of the appts with mum as my stepdad goes with her. The problem is neither of them are asking questions about this condition, either that or they are holding info from me and my siblings so as not to upset us.
I have researched it quite a bit but alot of the info contradicts itself and is quite negative, i then found this site and realised there is actually hope and after reading things on here i am touched and inspired by you all.
Mum has had scans (CT and MRI) lots of blood tests and has got external drains at the moment.
The doctors were gonna let her home today, but they changed their minds and have now decided to transfer her to Royal Surrey.
The doctors have said they will operate in 4 weeks, sorry dont know exact location of tumour. ( I think i’m gonna have to get together with the doctors)
And Yes i am in UK.
I really hope things work out for your mum, how old is she.
Thank you also Lainy and Joolz for welcoming me to the family.
Best wishes for now.
Lulu x
Hi Lulu
My mum was diagnosed in February 2010 and I was in the same state after diagnosis. I have found this site to be of great help both for information and support, and I am sure that you will too.
As Lainy says do as much reading as you can about cc so that when the doctors tell you things it is easier to understand what is going on, and as Joolz says, whenever you think of a question write it down so that you don’t forget to ask it at the next appointment. Recording your Mum’s session with the doctor is also good as it is difficult to remember everything that has been said. Also in my experience what your Mum hears and what you hear will be different.
My mum did not have a biopsy either, just scans (CT and MRI). She has had plastic stents since diagnosis. Does your mum have this or an external drain ?
Has the doctor talked about any treatment options yet ? Do you know where the tumour is ?
It is such a lot to take on board at the moment and I really feel for you.best wishes
Jemima
PS Are you in the UK ?
Write your questions down and ask your Mom’s doctor. Take notes. In fact, begin a notebook where you can keep things organized. A lot of us do that.
Sorry you had to find this forum!
Hello Lulu and welcome to our wonderful family but sorry you had to join us.
Your feelings are normal after heaing of yhour Mum’s diagnosis. It’s big, something you never heard of before and what to do next. First I would like to suggest you read up as much as you can as knowledge is powerful. Next I would ask you if these doctors have have experience with CC and where is Mum being treated. A clogged bile duct is what causes the Jaundice so after the drains were put in she should be feeling a little better. I have not heard of blocking 1/2 of the liver but then it could be new and I admit I don’t know everything. But fear not we have some wonderful members on this Board and I know someone will come along and be of more help to you. I just wanted to say welcome and please keep us informed on your Mum. You are not alone, many people here who really care!Hi, my mum has just been diagnosed with cholangiocarcinoma, she is only 63 and up until about 2 weeks ago she has always been as fit as an ox.
She developed jaundice and just seemed to get more yellow by the day. After what seems like endless tests she was finally diagnosed and admitted to hospital on Friday. They have put in drains, and on Thursday they are going to block half her liver to force the other half to work.
They have confirmed that she has a blocked liver and a thickening of her bile duct, but not wanting to appear ignorant she has had no biopsy done, i am just totally confused, mum is not wanting to ask questions and is scared.
I have looked on some web sites but to be frank it scares the pants of me, my siblings and i are trying to keep mums spirits up but it is hard especially when we have so many unanswered questions.
I have got so many different emotions at the moment, trying to stay strong for mum, its like i’m talking about someone else one minute and the next i’m sobbing like a baby.
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