Topic: My First Post...

Hallo Everyone!

After more than two years "lurking" around this forum, I have finally decided it is time to post so here goes.  I am 53, live with my husband in Devon, and have grown up twin daughters.  I was diagnosed with cc in October 2010 - not a great number of symptoms but just enough to know that everything was not as it should be.  Abnormal liver function led my GP to request an MRCP, which gave us the diagnosis you are all so familiar with.  I know that I was actually quite fortunate to get a quick diagnosis, but I still recall  those early days as pretty difficult.  Our healthcare system is a bit different here in the UK, and I found myself referred to a hospital with an upper GI cancer specialist team in Plymouth.  After more scans, they told me that they thought I was a candidate for resection, and of course by this time I realised that they were magic words to a cc patient. 

Surgery took place on 10th November 2010 - nearly 9 hours, during which time they removed  the left and caudate lobes of my liver, bile duct and gallbladder.  A new bile duct was fashioned from a piece of small bowel.  I had a pretty good post-op recovery, although my wound took many weeks to finally heal.  As you might know by now, post surgery chemo is not standard in the UK.  I was considered for the BILCAP trial but they decided that the risk of blood clots for me was greater than any potential benefits.

I went back to work part time at first, and then full time after a few months.  The first year after surgery was very challenging mentally - it seemed I was waiting for the cc to come back.  But I have learned how to live with that now, and I have just celebrated two years since the surgery.  I am only having annual CT scans now - next one is due in February. 

My cc journey has been, and continues to be, one full of people who have never heard of this horrible disease, so I am committed to raising awareness and to helping raise funds for research into cc.  Who knows what's around the corner for any of us?

Thanks to everyone who contributes to this forum.  It has been a wonderful source of support and information for me over the last two years, and I hope it will continue to be so!

Helen

Re: My First Post...

Hi Helen,

Welcome to the site, and I am glad that you have decided to "de-lurk" after these 2 years! Although I am sorry that you had to find us all, you are most welcome here. And thank you so much for sharing your story with us all. That is great that you were able to get such a quick and accurate diagnosis and also to be a candidate for resection. As you rightly say about resection, magic words for those with CC.

I know what you mean about people who have never heard of CC. I was one of those until my dad was diagnosed and I am guessing that you were one too until your diagnosis. Most of us are that way until it affects us or our loved ones so thank you for your efforts in raising awareness about CC. That is great news about your 2 year celebration since your surgery, and that is to be celebrated indeed!!! My fingers will be crossed for your good news to continue with your next scan in February.

I am glad that you've joined us all here as I know that the members will be of great support to you, and you will be of great support to everyone as well. We so love hearing good news stories like yours! Well not good about someone new with CC but I am sure you know what I mean! Please keep coming back here and know that we are all here for you.

I too am in the UK, in Dundee. And we have many members also from the UK as well. I am sure that they and others will be along soon to welcome you here as well. But it may be a bit quiet around here for a few days as our American friends are thinking about, planning of, cooking of and eating their Turkeys tomorrow!

Glad that you have de-lurked and looking forward to hearing more from you.

Best wishes to you and your family,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

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Welcome, Helen, no longer a lurker! Well I cannot think of a better story to usher in the Holidays! You ARE a Super Star! I am wishing for you continued success and now that you came out of lurksville, please hang around us as we are the best family you will find anywhere! Happy, Happy Holidays and you give HOPE to many others!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Hi Helen,

I am happy that you have decided to take the leap. I am sure you you will be a great addition to our family. It is so wonderful that you are doing so well and I wish you all the best with your scan. Hoping to hear from you again.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

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Welcome to the site Helen and congratulations on your two years!!

-Susie

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Helen
Welcome to this wonderful site and thanks for sharing your story. 


Gerry

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Welcome Helen, your story is inspiration that I need to hear as I manage through my dad's recent diagnosis.  Thanks so much for sharing your story!  I wish you all the best! 
Rena

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Helen
I read your post with interest.  I too am in the uk (I was in France and had all my treatment in France).   As yet I haven't met anyone in the uk that has cc, I cannot find any forums, discussion groups or support groups specifically for cc in the uk.  This site is amazing and I feel without it I would have felt so alone and lacking in information.  I was diagnosed a year ago and also had a resection and had complications but I am now doing really well.   I wish you all the luck in the world Helen.  Thinking of you, Sandie x

.... because I can ....

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Helen.... a warm welcome from me to you.  Congratulations on passing the two year milestone. 
It always is great to have a "lurker" join in the discussions because, each and everyone brings a new perspective to our site.  to our interactions.

Sandie....it is wonderful to know that you are feeling great.  I am wondering:  had you travelled to France for your treatment only or, did you have other reasons to be there?

Regarding support groups:  it is a difficult undertaking and has not taken off in the US either.  Our Mark had been successful in Atlanta however; there has been no other person we know of who established a support group in their hometown.
For those interested please, take a look at this video
http://www.cholangiocarcinoma.org/media.htm
We will support anyone in their endeavor by delivering brochures and other materials needed. 

Hugs to both of you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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When I contacted Mayo Clinic here in Phoenix last Spring I reached the right people but was told that CC patients would have to be combined with other Cancer patients as there would not be enough to have our own group. Now that I am at MDA here I was thinking of talking to my new ONC when I go next month for my Scan.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Lainy....and that is the reason.  We have about 6 to 7 thousand CC patients yearly.  For any to be clustered in specific area is highly unlikely. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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Marion
I was living in France when I was diagnosed and treated.
Sandie x

.... because I can ....

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Sandie,

I am from the UK.  There is a charity in the UK called AMMF, the UKs only cholangiocarcinoma charity.  There isn't a forum as such but there is information on their internet site. Helen who set up the charity in memory of her husband Alan is extremely helpful.  They have a facebook page too.

www.ammf.org.uk

Take care

Andie

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

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Thank you Andie, AMMF looks excellent and I will enjoy reading their news.
Many thanks
Samdie

.... because I can ....

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Helen,

Welcome to the site and congratulations on your wonderful milestone! I am so happy that you were able to have some significant treatment options early on and it sounds like you are doing well. I will keep you in my thoughts and prayers that you continue to stay well and that your scan in February brings you the best news possible. I am certain you will become an inspiration to many of the newly diagnosed members on this site. I lost my Dad after an 8 week battle in 2007, so I wish for you what was not possible for him and does my heart good to know you are doing so well. I am rooting for you!

God Bless,
Missing U