I don't know where else to go
three weeks ago my wife was diagnosed with bilary duct cancer and the surgeons have already done a liver embolisation to cause the other side of her liver to grow prior to surgery. Presently she has insurance and a job but I need to know what to do to try to protect where we've lived for the past thirty years.
on wednesday she goes in to have a chemo port installed
to put it bluntly, I'm scared shitless and don't know who to talk to or who to discuss these things with
any help or direction would be greatly appreciated.
Thanks in advance.
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It seems to me that you're in the right place by posting here in Cancer Support.
I don't really know how to advise you, since I've not experienced your sort of situation, but believe me when I tell you that I am so very sorry to hear about it.
I hope others will chime in, who do know how to advise or direct you.
I am very sure you're not alone.
Please take care of yourself and your wife...
...and all you are going through. I am no expert, but I would offer two suggestions. First...you need a support system for yourself in order to support her. That could be a family member if one is available. Or it could be a support group through the medical system you use.
I hope you will reach out because often people in these support groups really understand what you are going through because they have lived it. They may point you to resources that can help.
Second...prioritize. My experience taught me to weed out and eliminate things from my life that added stress or were unnecessary. Sometimes that means delegating tasks to others so that you can focus on your wife. If you have family around ask for support. People usually want to help, they just need to know how.
Good luck to you. I will keep you and you wife on my thoughts and prayers. 
It's hard to put into words just how much a life changes on the words, "We found a carcinoma"
My wife, after diagnosis, wasn't prescribed any anti anxiety meds so we ended up with two stays in the hospital due to her stress level feeding on itself. Finally, I had her surgeon issue a script and that has relieved a bit of her tension.
We've been married almost 45 years and thought we were going to make it to retirement and be able to do some things, we are both under medicare age and as I said, she still has a job and insurance. The advice to talk to the insurance people at her work is greatly appreciated. She's been handling that, kind of keeping me out of it. I guess I have to tell her that there can't be any private conversations about this..
She still doesn't have an oncologist, the surgeons that are going to do the operations are top notch and teach this type of surgery, the rest is still in limbo.
If this is disjointed I hope you understand. I really need somewhere to vent, DU seems to be there for that in more ways than one.
...and to get support. All kinds of support systems are helpful.
sites for your wife's diagnosis. They have been invaluable for me and I thank each person who has been willing to share their experiences.
The port can make things so much easier and certain types of chemo can only be given via a central line, the health care professionals are rather adept in placing the line.
As others have noted it is very helpful to have someone who can support you and your wife, many times people do not know how to help, but you only need one or two strong leaders to rally support from others. As my sis says these are the people you want in your lifeboat, their number can be small, one is sufficient. They just need to support you so you can have the energy to support your wife.
Sending you strength and best wishes in this journey.
Last edited Sat Sep 20, 2014, 11:08 PM - Edit history (1)
...I was very scared. I did not want to tell family until I was ready, especially my children. I thought it might ruin vacations planned, work schedules, etc. Someone told me that I just needed to trust them enough to handle it. They were right. My kids did fine and were a wonderful source of support. 
How old are your children? They may be who you need to lean on...
Edited to add link to support site: http://gildasclubsouthflorida.org/cancer_support
....SS disability benefits? That could help with income.
People at the link I sent might know how to do that but I would start by calling SS tomorrow. I'm wondering if she might be eligible for some amount of in home care...which would help you to get to work. Or do your sons have time or other family that could come to Florida to help? Even temporarily could give you time to learn about other resources.
And...with what you have said...you may need to talk to her doctors about hospice support. 
I know that hurts but if she needs it it would support you both.
a friend of a family member appeared and gave us great support, so you just never know
Support can also come from people online that you do not know, those going through a similar situation. A search came up with this site and there is a discussion group at the link, it might help or it might not, but worth a shot.
http://cholangiocarcinoma.org/punbb/
Sometimes the statistics are based on older treatments and advances are being made daily, I hope that will be the case for your wife.
we were just sitting here discussing the things in our life.
thanks for what you just posted, I have to get back to her now.
whoever you are, I love you.
I've been on the cholangiocarcinoma site most of the afternoon trying to find things to help her and it's the most complete
site I've seen for information concerning treatments, nutrition, and care.
You have made a friend for life.
that speaks to your current situation. Online sites for a particular disease can be very helpful ... they were for me.
Just remember that the numbers could be outdated when they speak of percentages and you never know if you are in the lower percentage or higher percentage, no reason your wife cannot be one of those in the higher survival rate.
Remain vigilant and optimistic as much as possible.
You have made my day.
Please ask the surgeon's office if the medical center employs Nurse Navigators. They are medical project managers who help coordinate appointments, help with questions you don't know to ask, and help with support. One was assigned to me on the day of my diagnosis as part of the treatment plan and she was a godsend in helping keep me organized.
I would be very surprised if there weren't cancer support groups available where she will be getting chemo (and rads?). The challenge might be in the timing - they may only meet during hours when you are at work or need to be home with your wife. Wishing you both the best outcome.
Lot of good information in the group.
