Waiting for things to get better

You have really been through a lot with yours. My husband was diagnosed in May with his CC. I honestly can’t tell you the stage because I never really wanted to know. We are currently halfway through Gemzar/Oxipliplatin for his. We do the scan in two weeks to see what progress. He had pretty bad cold sensitivity to the Ox so we understand that. He is currently drinking warm water and wearing gloves everywhere. He’s about roasting me out of the house turning the heat up and I am still wearing shorts and t-shirts.
You sound like your in-laws might be related to mine so I feel you pain with that. They have butted in and caused me so much more stress. I can’t seem to get it through his mom and sisters’ heads that he really is sick. His mom just thinking that he should “just get over it.” Then calling him all the time to ask for help doing things he shouldn’t be doing. I don’t think any of them realize that this will probably kill him…..so she just wants to work him into the ground.

As for the negativity of the website….I did see that a little in the beginning. It seemed depressing but a couple of things I can point out.
#1 check out the thread of Milestone posted by people. There are plenty out there who are living with this as if a disease no different than diabetes or heart disease

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883

#2 Clear back in nursing school I was having a really hard time dealing with being in the nursing home and all the “old people” I only saw as waiting to die. It tore me up. I had a nursing instructor pull me aside and tell me that there is positive in anything all you have to do is look. I know it’s hard when you are dealing with something like this but that is what I try to do.

I have also found that by sharing my problems, some have gone before me and have good advice. We can also share our experiences so that others can learn.

Thoughts and prayers going your way.

KrisV

Hi,

I am also Stage IV now, and on Folfox, which after 8 rounds has become increasingly difficult for me. Although not the worst of my side effects, having a numb tongue and teeth is an odd sensation. I understand the strength required in this stage of the disease to put out each fire as it flares up, and then move on. Although I am still working (with reduced responsibilities), as the circles of my life have contracted with the progression of the disease, it becomes emotionally challenging. But you are expanding your circle to encompass the Mediterranean! Fantastic! I’m so glad you didn’t hesitate in accepting the bonus from your mother-in-law. You deserve it, and It’s for her own good, what with the penance and all.

I remember when you first posted this summer. You continue to be an inspiration. Thank you for updating us.

All the best, Mark

Oh my goodness, don’t you EVER think you are taking up our time, we are here for you. I do love the way you are doing things as a loving couple as those Memories will last forever. Sorry to hear about your hip, glad to hear the radiation is helping your hip. This is like “on the other hand” post. You have been through so much. Good for you to win the lawsuit as every bit helps! Also good luck on your fund raiser, Bingo. I never did one before but I would imagine if you can get a Hall donated perhaps from a Church, American Legion or someplace like that, have a fee for the Bingo Cards, Like 5 for $20, have prizes donated so that you can use all the $$ for donations, and also items donated for a raffle with a price on the raffle tickets. I went to 1 about a year ago and they even had cookies and drinks they sold for a cheap price. Good luck to you on everything going on for you. I am wondering if you ever went for a 2nd opinion on your CC?