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.

be to call the hospital and see if they have a "patient advocate" or "patient ombudsman." This person helps the patient and family navigate all the stuff that will be happening.

Contact her workplace and talk to HR; there may be a person designated to help very sick employees and their families through the insurance process and the sick day/short-term disability/long-term disability issues. When I had breast cancer, the insurance woman at my workplace was a godsend. I was a wreck, I was still coming in to work as I was getting radiation, and she was the kindest person -- if I forgot some paperwork, she'd call and remind me.

As someone said above, ditch all unimportant stuff.

If you are familiar with Excel spreadsheets, start making one for your wife's appointments, surgeries, etc. Record the date, doctor/hospital, type of doc (oncologist, radiologist), type of visit (liver surgery, radiation, chemo, etc.), and notes on what was said/what happened at the visit. The ombudsman at my hospital suggested at the very beginning that I keep a spreadsheet and keep it updated, because I would never remember what happened when. She was right. My spreadsheet has been invaluable in tracking my appts. so I would get the optimal care I needed. I still keep a spreadsheet of all my dr appts. If you aren't into Excel, buy a sturdy notebook and record the info in there. Just be religious about keeping it up to date. Take it with you to all her appts.

As far as protecting your home, is there some reason you are worried? Has something happened? Do you feel the bills will be too big to pay? Remember that you can declare medical bankruptcy if you need to, and they cannot take your house or car.

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.

and have found that the survival rate for 5 years is 15%. My wife knows the same. We have no family here in Florida anymore and our kids are in Texas and Arkansas. Our friend total is minimal and there are none that I know that have any fortitude, boy that was a hard thing to realize.

Where I work, I'm just the maintenance guy, where she works, she's just an admin clerk. Neither of us have developed after work relationships with anyone.

Do you have any idea where I should look for the supportive person(s)? I'm at a loss.

Last edited Sat Sep 20, 2014, 10:08 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

40 & 44. They are aware of the diagnosis. The older one is having a harder time dealing with it than the younger.

My problem is trying to help my wife with her pain and the scheduling of appointments, and being a help to her while still

trying to keep my job and hold on.

I'm in west central florida and all the support groups meet during the day which makes things very very hard to get to.

....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.

she's going to go back to work tomorrow. Of all things, she doesn't want to use her PDOs unless she has to.

If she does use the 80 hours of PDO, she can then go on short term disability, which we hope will lead to long term

disability payments. The FMLA is in place but only to be used in short amounts, not a short term disability platform.

We haven't discussed anything about hospice, it seems like such a final matter.

thank you so much for the replies,

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.