Could I also recommend AMMF as a great resource in the UK - good factual information and an amazing charity providing funding for very vital research into cc.
Their website is Www.ammf.org.uk
Hope things continue to go well for you.
I forgot to ask as well, would you mind posting your blog link over here in our blog section of the site as well?
http://www.cholangiocarcinoma.org/punbb … .php?id=31
We have lots of members who go to that part of the site to catch up and find other peoples blogs and yours would be a great addition to the blog section here on the website.
Welcome to the site which I agree is full of great support and information. I have learnt so much here. I'm also in the UK - north of the border in Glasgow.
Your blog is great - already looking forward to reading more about your recovery.
Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what you've gone through. But glad that you have joined us all as you are in the right place for support and help and I know you'll get loads of that from everyone here. And thanks also for sharing your story with us all and I am sure that that will be of great help to others too.
I too am in the UK, in Dundee in Scotland and my dad was diagnosed and treated at Ninewells. Thats great that you were able to have the whipple and we have a load of people here who either they or their loved ones had that as well. I'm sure that some of them will be along soon to welcome you and share their experiences of it with you. Thanks also for your blog site, I'll have a look at that as well.
I take it that it was North Manchester where you had your whipple done? We have quite a few members here form the UK as well. It sounds like you are making good progress with your recovery from your op and I wish you well and hope that it goes smoothly for you. Did your docs mention anything about any other follow up treaments?
Hope that you keep coming back here and let us know how things go for you. And if we can help in any way then please just ask. Looking forward to hearing more from you and please know that we are here for you.
My best wishes to you,
First of all, let me say thanks to everyone who contributes to this site. I found it really helpful prior to my operation for finding out information about bile duct cancer.
I will try to keep this short!
On December 20 2012, I was admitted to hospital with stomach upset, no pain just an uncomfortable feeling. The doc said that I was jaundiced and we hadn't realised. All tests indicated some kind of liver disorder, with glucose levels high and bilirubin over 100.
My timing could not have been worse, I had to stay in hospital over the xmas period to wait for an ultrasound scan, during this time I got the fundamental blood tests,x-rays, etc and my jaundice went through the roof with a bilirubin count of 200!
Despite all of this I felt fine, and somewhat guilty for occupying a bed that someone else may need.
Anyhow, I got my ultrasound early Jan which indicated sludge in my liver, possible gall stones and a stricture on my common bile duct.
Further tests followed including MRI Scan, 2 CT Scans and the doc recommended an ERCP procedure to fit a stent in the bile duct. The first one of which failed and required that I had to wait a week for a follow up op. Which thankfully worked.
It seems that I baffled everyone and the docs admitted I was beyond their ken and I was then referred to North Manchester Hospital, to the specialist liver team.
Something inside had always told me that there was nothing wrong, I felt fine and I always thought I would get a diagnosis of Autoimmune pancreatitis but I didn't and the specialist said that while I was young and healthy it was better to err on the side of caution rather than represent in a few months and it be too late to do anything.
I was given an uncomfirmed diagnosis of possible cholangiocarcinoma and offered the opportunity for a live saving whipple, which naturally I took and I am blogging my recovery progress here,
If anyone wants to know how a person feels/heals after the op please take a look.
I found a lack of this type of information missing and was determined that I would put it out there!
I hope it helps someone.