Topic: From Western Australia

Hi

I just stumbled on this forum as I goggle cholangiocarcinoma on the net.

I am from Perth, Western Australia and my mother was diagnosed with CC just over a year ago.  It was detected late (only by the presence of jaundice).  She had radiactive sphere and chemo but only really as a interim measure.  She has now stopped all treatment and well into Stage 4 with spots in her lungs as well.  She has had a number of stents with the last only being a few weeks ago and with no success (i.e. she is still very jaundice).

We have her at home and we all care for her full time.  My family is not too good about talking about everything and I think my dad does not want to accept the reality of the situation so it is hard to really get straight answers from him.

I just want to know what to expect over the next few weeks/months.  She is pretty much bed bound so I can't imagine that she has too much longer...but no one will give me a straight answer.

So...this is a bit of call for anonymous help

Re: From Western Australia

Hi Liz,  I am so sorry to hear about your Mom.  It sounds like she has really been fighting this terrible disease.  Liz no one can really tell you how much longer she has to live.  You said she has had many stents and the last one failed.  If there is no medical intervention to drain the bile being produced she will probally continue to be juandice and end up with infection and go down hill from there.  In a lot of cases the infection or disease just plainly gets to the point that other organs just start to fail due to her immune system can only fight for so long.  AS you probally know already, there is no known cure for this disease and it can be very aggressive with some people and then others are able to fight for months and years.  It would not be appropriate for me to say what or how long as it is so individual. Ultimately it is your Mom's decision. Has she fought all that she can or all that she wants to?  It is so emotionally and physically draining fighting this cancer.  The only straight answer I can give you ,is if no further medical intervention is being taken or can't be taken, It is in the hands of God.  I would focus on love and being there for her.  What you read on the web sites pretty much tells you like it is.  Caring and loving support is what she needs most.  Your Dad may not want to accept the reality of what is happening but I'm sure he understands and knows.  He's gonna ride the roller coaster to the end and he to needs support and love during this very trying time as well.  A lot of people just don't discuss much as it is thier way of hiding emotions or protecting other family members.  It's just a natural coping mechanism.  It's has nothing to do with getting straight  answers.  Love and cherish each and every day is the best medicine at this point.  I pray that your Mom and the whole family finds peace.  God Bless You All.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: From Western Australia

Thank you for your words Jeff.

When I wrote my first message I felt quite frustrated so i hope that it did not come across to badly.  I know that there are no right or wrong answers in this situation ... it is just difficult to know what to do all the time.

Today I took the day off work to replace Dad as mum's carer (as he had to go to work for the day to tidy some things up).  I did not realise just how hard it was or how full time.  My hat goes off to my Dad and all other family members that give full time support to their love ones.  My heart broke a number of times today but I am so thankful for the time I got to spend with my Mum.

I think this website is so fantastic.  Reading other experiences makes you realise that there are so many others going through similar things and one can get a real strength from that.

My thoughts and prayers are with you all

Love

Re: From Western Australia

Dear Liz,

After reading your message I really understand your feelings and the difficult time that you are going through.  My father also has CC and he had a resection last year and recurrence about 5 months later.  He is now going through his 2nd regimen of chemotherapy (his first one the supression rate was not so good). 

At the moment all I can say to you is that you must remain strong in front of your mother and keep her and your father in good spirits.  I find that you must keep a very positive attitude, and just enjoy the best time of your life with them as much as possible.  Are the doctors not even going to offer her chemo? 

Even though chemo is very "gray" area when dealing with CC, but there have been some amazing results with some people.  My father is currently on ERBITUX / GEMZAR and it has shown some results as his tumor marker is going downwards.

Have faith in GOD and I wish you and your family all the best.

Keep in there!

5 (edited by ukmember Thu, 17 May 2007 09:12:51)

Re: From Western Australia

.....but there have been some amazing results with some people. 

Very very few people have amazing results. I think the only person on this site who is post five years or even two or three(??) is JeffG, who gave you very sound and realistic advice/information.

Show your mother all the love you can. Be with her, play music read, play games look at photographs, whatever it is that makes her feel peaceful and cherished. Death comes to all of us; what I believe we want at the end is dignity, the presence of those we love and peace.