I am a CC survivor!
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Anne-Marie –
One thing you will find is that the vast majority of those on this site are incredible* optimists. Sometimes there are periods of anxiety, but we all have them and have to work through them. I was told in high school by a would-be thespian that “If you can’t smile, then grit your teeth. It looks the same from the third row.” Feel free to share your joys and pains, highs and lows. Someone here has surely seen/felt the same as you at one time or another. Some are wonderfully empathic and supportive. I’m a little more “Yeah, cancer sucks. You got handed the sticky end of the lollipop. Get over it and get on with life. Whether you have 30 days or 30 years, make them the best days or years you can.” Understand that the option of a resection, even multiple resections, is a gift many of us would be happy to have.
* The normal adjective is “incurable” but that’s a word I try to avoid. You always have to have hope. Sometimes that hope will be for something simple, but you always have to hope for something.
Smile – it makes people wonder what you’ve been up to.
Duke
Anna-Marie,
Welcome to the group. You will find that there is no better place to be when dealing with this disease. You are a very strong woman to have gone through and dealt with everything that you have had to. Thanks for sharing this with us. I too hope you have more good news to share after your appointment at the end of the month. Looking forward to hearing more from you.
Hugs,
DarlaAnne-Marie,
First…welcome to the website and a bunch of some of the most compassionate/caring and knowledgable folks you will ever meet..cyberspace or elsewhere. I just sorry you had to find us in the first place.
Second….I have to tell you how impressed I am with the fact that you dealt with the diagnosis and initial surgery without your immediate family there by your side. You are one tough lady!!!!!
Then, to go through what you did once you were in Australia.!!!! ….having to push as hard as you did to find someone who would take you seriously….but basically diagnosing yourself and then finding a surgeon to do another resection….do you know how hard it is to convince surgeons to do a second resection for CC?……and dealing with your daughter’s wedding on top of everything. As if being mother of the bride isn’t enough stress by itself. Did I mention I think you are one tough lady?
Please post again when you visit with your surgeon at the end of the month. We’ll all be here praying and cheering for you for good news.
Julie T.
I forgot to say Anne-Marie, would you mind going over to this thread on the site here and posting info about the surgeons and treatments that you had in S.A and Australia? We are trying to get as much info worldwide about doctors, hospitals etc that have experience in treating patients with CC and as far as I can recall, we don’t have much here on the site about S.A.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=8
Thanks so much!
Best wishes,
Gavin
Hi Anne-Marie,
Welcome to the site! Sorry that you had to find us all here but glad that you’ve joined as you are so in the best place for support and you will get a ton of that here from everyone. Thanks as well for sharing your story, that certainly has been some journey for you both medically and with the miles!
I think you may be one of our firsts, diagnosed and treated in one continent and operated again on another continent! Glad to hear that you were able to have your surgeries and I so hope that you get some good news from your surgeon at the end of the month. Please let us know what is said.
I too hope that all will turn out well for you and please know that you are not alone in this now, we are all here for you and we care. Looking forward to hearing more from you.
My best wishes to you,
Gavin
Dear AnnaMarie, welcome to the best place to be for CC support. You have truly been on a CC roller coaster ride. It is unbelievable that the Doctor told you to come back in a year. Usually, the Doctor visits start out at about every 3 months and that can go on a long time. I am so glad you have found a Doctor who seems to have more knowledge about CC. Your story also shows how we know our bodies better than anyone and we need to listen to our gut feelings as they will always steer you right. Please let us know what the new Doctor says and BTW congratulations on your daughter’s wedding!
I am a 52 year old bile duct cancer survivor from ‘Down Under’. Firstly, I am so very grateful to God and the surgeons that I am still here. I am aware of how fortunate I am to be alive.
I was diagnosed in March 2012 after presenting with pain in the upper abdomen. We were busy migrating from South Africa to Australia and my husband and two daughters were already in Australia. I was the only one still in South Africa; wrapping up our business affairs. I drove myself to hospital on the same day that the pain started thinking that it might be gallstones. It was after an ultrasound that I was told that there is a much more serious problem. CT and MRI scans showed two large haemangiomas as well as a cancerous lesion of 6.1cm x 5cm. After hearing this news I felt devastated and as if I would never be able to join my family in Australia!
Thankfully I was able to receive a resection by a wonderful team of Professors/surgeons at the University of Cape Town Grootte Schuur hospital. 2 months after that I was well enough to join my family in Brisbane and received 6 months of chemotherapy – Gemcitabine.
In March 2014 the oncologist informed me that I was well and that I should only come back in March 2015. But 3 months later I again experienced the all familiar nausea, fever, terrible itch and abdominal pain. I saw 2 GP’s who would not believe that there was anything wrong. They told me that the blood tests are okay and that the tumour markers are normal. (We know that it can be with BDC.) I then went to a friend who is a GP and asked for a CT scan that confirmed my fear. A lesion was found in another section of the liver!
I found a surgeon in Brisbane on the internet and she confirmed that it could be resected again. This happened 3 weeks prior to my daughter’s wedding so we waited till after the wedding for surgery on 23 October 2014.
At this stage I am waiting in anticipation for my appointment with the surgeon at the end of this month. I am trying to stay positive and I am praying that all will be well.
Thank you so much for this group. I have learned so much from listening to the webinars and reading the posts. Thanks to the moderators for your time and effort and for helping others the way you do. It is much appreciated!
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