(1 replies, posted in Members' Cafe)

Kris, it is all normal, the new normal. Just let it all hang out, it has been only a few weeks. I think you are doing just fine and I am sure Mark is very proud of you!
Your Grandson is absolutely adorable!!!

Dear Lorraine, you just never know what one will discover. I think it sounds like a splendid RX for any illness! I myself, love the nougats!


(8 replies, posted in Introductions!)

Dear Krassi, pour out as much as you need, that is why we are here! I am so very sorry about your Sister. It sounds as though all the right things were done. I do get so angry when I read of young people getting this CC. You never know how strong you are until "strong" is the only choice you have!
I do have a list of signs that the end is near if you feel you are ready for that list. Everyone is different but my husband followed it very closely and I found the more I knew the less afraid I got.
If you would like a copy please email me through this forum by clicking on my name to the left.
Wishing for your Sister to have  a more comfortable journey and try to be very strong. We are all with you.


(4 replies, posted in General Discussion)

Dear Moontje, YIPPEE! for those who think we don't have good news this is the 3rd YIPPEE this morning!!! Spring is good, a time for new beginnings! I am so very happy for you.


(8 replies, posted in General Discussion)

Dear LOUIE, YIPPEE! Miracle of Miracles!!!!  SO happy for all of you.

YIPPEE, Lauren, just keep those numbers spiraling downward. Good news, indeed.

Hi, Lorraine! Unfortunately that stent problem kind of goes with the territory. It got to a point that ER would meet Teddy at the door with the Levaquin IV. The ONC had once told me that when the temp goes over 100 take him in. We kind of learned to roll with the punches and he got the infection about 2 X a year so that was not too unbearable. I was happy that Teddy would and could eat anything but when he didn't eat as much he went on Carnation Instant Breakfast, the vanilla and I would blend in a banana. Actually any fruit would do but as we know a banana has lots of protein. Hospice had once told me that this drink can take the place of any meal, all 3 meals or as a drink with meals. Best of luck on your stent situation and hoping it calms down.


(11 replies, posted in In Remembrance)

Sandy, what a beautiful family and thank you for the picture! Don't know if you are one of my believers but if you are I would happily send you the list of how you will know when hubby is  around you.

Dear Izabella, welcome to the best place to be for CC support. I am sorry to read about your Dad, and just want to say do not be afraid to go for another opinion as different eyes see different things. Below are some sites you may find helpful and I know others will be along with their suggestions. Please keep us updated on Dad's progress as we truly care.

Newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/

Hi, Nancy & Ron. Sounds good to me as we all know treatment for CC seems to be a hunt and peck ordeal. Yet, this is all good news. Thank you for updating us and have a great Memorial weekend.


(29 replies, posted in Introductions!)

Dear Faisel, good to see you but I am sorry about what is occurring with your Father. Usually fever, chills and tiredness can mean that he has an infection and needs immediate attention. I would suggest calling his Doctor or taking him to Emergency at the Hospital . If it is an infection there are prescriptions that have a quick response. Best of luck.

Dear Susie, it is so good to see your smiling face and to read your good news. My daughter had 7 miscarriages between the first 2 kids and ended up with 4 healthy gorgeous children! Guess I would just consider it a trial run and when the timing is right, it will happen. We have been together a long time  and I am so excited for you. Let us know when we will all be Aunts and Uncles. Love and hugs and best wishes.


(12 replies, posted in Members' Cafe)

MIDSIS, rolling forward!!! Teddy absolutely changed T Paper and that is why I fell in love with him.
My Ostomy Nurse came yesterday and yes, most Med peeps don't believe however she told me she is very Spiritual and that is the first hint that one does believe. We totally laughed after I yelped when she applied an alcohol wipe to my irritation (normal bump in this 8 week recoup) from the stoma. Then we sat down in the living room and while she was ordering supplies for me, she said she could feel T in the room and she felt he was laughing with us.
A T.P. hint for living alone. When a roll gets 1/2 way through I add a new roll and put the used one atop just resting there. NEVER run out.

Dear Lee, EXCELLENT news. Sending good vibes that this upward trend continues.


(210 replies, posted in Introductions!)

Matt, no more showers for you, young man!!! Holy moley! I am beginning to think it is not the surgeries that are scary it is the recovery! Good news and not so good but it sounds like you have a plan and that is always the best.


(6 replies, posted in Introductions!)

Dear FlowerLover. I am so sorry to read about your FIL and agree with what Matt has written. Dana Farber is experienced with CC but sometimes another opinion from another ONC can be valuable. With that said, one of the most difficult things in life is to change places with our parents. Mine also were very independent but the time came for me to let them know I am here to take care of them now and sooner than later they really depended on me which is what I wanted. I am wondering if FIL is in any pain RX?  I would be more comfortable with the situation if your husband could talk to the ONC and find out for sure what is going on. The only thing I have which may be of interest to you is a List of 10 signs the end is near. If you feel you want that just send me an email on this Board by clicking on my name to the left. Honestly I feel that you may need a family meeting to let them know that you want to be part of their team and that they cannot do this on their own. Best of luck.


(12 replies, posted in Members' Cafe)

Kris I am loving your posts. A little suggestion for you.....I immediately started a "diary" if you will, on T and am up to 112 visits in these 5 years. When I am feeling a little lonely I just sit and read all the Log. Then I think, how lucky am I?

You may have seen this but I wrote it a few months after T relocated!

How Are You Doing?

Everyone asks me how I’m doing since you went away,
With a smile on my face I answer, “I really am okay”.
Matter of fact its very hard but I promised to be strong,
Until the time we meet again, in your arms where I belong.

In the morning when I wake, once where there was warmth all night,
There’s nothing but an empty space and a pillow to hold tight.   
Our closet now holds all my clothes it still looks kind of strange,
I try to make it look like more and constantly rearrange.

When I’m in the kitchen and working at the sink,
Many times I stop and this is what I think…..
If Teddy was here he’d grab me to give a little cue,
That he was about to hug me and say his, “I love you”.

No more are the corny jokes that grew longer by the year,
What I wouldn’t give now for just one more, to hear.
When someone calls, your message is still kept on the phone,
That way no one knows I am really home alone. 

When day is over and dinner is eaten by one, 
No more thank you-s for the meal well done.
Can’t find anyone to scratch my back,
There’s just a big hole here, a hole of midnight black.

But, how am I doing? I’m doing okay,
I know that you would want it that way.
And I know you are with me morning to night,
Still watching over me, that every things all right!


(6 replies, posted in In Remembrance)

Aiste, what a very handsome man! He has an extremely kind look and I bet he liked to tell a joke or 2. A real Gentleman and you are lucky to have had him as your father.


(91 replies, posted in Introductions!)

Dear Aiste, I am so very sorry for your family and sincerely hope that in time you will know Dad is all around you. I love the things you said to him and as you probably know he crossed the stream when you all left, that is the time he chose. Take care and know that your son WILL grow up into a wonderful person with a Mother like you!

Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.


(17 replies, posted in Members' Cafe)

Gavin, you are truly my son from another MUM. Your last remark totally cracked me up.  I have realized that the wafer (gluey thing) is what is bothering me so stopped using it. Also Robin went on EBay and found all kinds of Ostomy supplies for a fraction of the cost.  Took a shower today and it was priceless!


(17 replies, posted in Members' Cafe)

Thanks, Randi girl, and guess I have hit my first bump. Having a bad skin reaction to the pouch. Anyone have some good suggestions on a cream to put on the skin? I don't get it, sailed through everything but now this. Oh well, this too shall pass! A little Ostomy humor there!


(12 replies, posted in Members' Cafe)

Kris, not strange....comforting! I know just how you feel and we are so blessed! Mark is really good at this stuff. Keep it coming, Mark. Do not ever be scared it is all perfectly awesome! I keep saying that true love transcends time and space!


(91 replies, posted in Introductions!)

Aiste, LOVE the picture of your parents. such a nice loving couple. Thank you for posting that.


(91 replies, posted in Introductions!)

Dear Aiste, the best thing we can do now is to pray that Dad's journey is Peaceful! Remember to keep talking to him as he does hear you. If you are able to tell him to go to his Peace, that you love him and you will be OK it does give you and Dad a release.
For picture, if you go to make a new post, under that post is the word "image". Click on image and upload the picture and submit. Prayer keep sailing over to you and your family.

  I asked for strength.     God gave me difficulties to make me strong.
I asked for wisdom.      God gave me problems to solve.
I asked for prosperity.   God gave me brawn and brain to work.
I asked for courage.       God gave me dangers to overcome.
I asked for patience.      God placed me in situations where I was forced to wait.
I asked for love.             God gave me troubled people to help.
I asked for favors.          God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed                                By Aaron Hoopes


(6 replies, posted in In Remembrance)

Oh, Cristine, what a lovely memory! Percy is guarding the harbor like he guarded our Members.