Through my husband, i join this very scary world of cholangiocarcinom
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Susan,
My husband passed away less than 2 months from his first symptoms and ER visit. Until then he appeared to be a very active, strong, healthy person. Hardly ever even sick. He was 62 and we had been together for almost 45 years. I met him when I was 15. Together pretty much 24/7. Because he deteriorated so quickly there was no time for anything. He wasn’t even positively diagnoised with CC until 2 weeks before he passed. He never was able to build up enough strength for any sort of treatment options. The day he died I had been planning to take him home and was in the process of setting up home hospice. His was a very aggressive interhepatic cholangiocarcioma. Also at stage 4 when diagnoised. It has been almost 4 years and in that time I have seen a lot of progress and changes in diagnosing and treating this disease. It is very unpredictable and therefore no one can say what or when things will occur. Everyone is different. We never had a chance to do the things you are doing and I am so glad that although you are in a bad situation you are doing the best you can and making those memories. I’m sure it seems surreal to you, but I am happy you are able to do these things.
I also have 2 sons, in their 40’s. I’m in Plymouth, WI. Not that far from you.
I will be thinking of you this weekend as you celebrate Peter’s life. I am also hoping you will be making that trip to Chicago. As Lainy mentioned, you may want to try to get another opinion ASAP.
My best suggestion is to take things as they come. Live for today and take it one day at a time. Otherwise it will overwhelm you.
Take care.
Love & Hugs,
DarlaWe are originally from Milwaukee. I know what you mean about lost in the trees. You feel as though you have been slugged in the stomach with a baseball bat. Have you thought of getting another opinion? We are strong believers in 2nd and 3rd opinions. Once a diagnosis is made and a regime of some treatment begins the fright turns to fight. Sadly it doesn’t sound like these Docs have a plan. Peter really needs to be seen at a major Cancer Center. We HAVE had Stage IV members who after being seen by another ONC/Cancer Center are doing pretty good. Do not live now as if Peter is leaving, make your plans as they can always be canceled. Think about seeing someone in Chicago at a major Cancer Center. You do need to act quickly if you plan on seeing someone else.
Lainey, We are from Muskegon MI. I guess that since we found Peters at stage four that we do not have the options you two did. Not sure what a Whipple is …so new to this stuff.
Planned on sailing to Chicago this summer to see our youngest son, not sure if that will work out. I am the executive director of a small mon profit but will be able to take some time off. Just am so lost in the trees!Susan, Teddy itched and Jaundiced when we were visiting our kids out of town. Our 2 week trip turned in to almost 3 months. Teddy’s CC was contained in the bile duct valve that connects the bile ducts to the Pancreas. He had an aborted Whipple then 3 weeks later had the Whipple again and had successful margins. We were told by 5 ONCS and Radiologists that Chemo would not work for where his CC was located. Everything went along fine for 3 years and then the CC returned where his Duodenum used to be. We opted for CYber Knife (a miracle) but they had to use Radiation first to shrink the tumor to under 7 cm. It worked and we had bought another 2 years. The CC then returned to the same place again. It never went to his liver. They suggested palliative chemo but Teddy asked the ONC how much more time it would buy and when the ONC said maybe a month Teddy opted for quality over quantity if one can call a month quantity. When first diagnosed he was Stage II. We do have a member on here that we met and Bob is in his 15th year! Susan, it was a 2nd marriage of 17 years and the true love of my life. He has yet to really leave me, I believe he is all around me. I may have missed it but where are you all from?
Oh Tiffany stage four also with young children. You are a few months a head of us. Is the father in the picture. I can’t imaging how down my husband is to also be a primary care giver to young children! I only hope you have a good support system there!
Sorry you had to find us.
This cancer knows no age. I’m 30 with two small children, and fighting stage 4 cc also.
Hang in there for you husband, it is a long crazy ride.Laing, thank you for your kind words. Wow 5 plus years. All I read is usually 10 months. Can I ask at what stage he was at and where it manifesteded itself? I would love to think of having that time!
We have two boys ( my step sons -grown), we took family photos this weekend. at his Celebtation of Life party this weekend (you can come) I hired a vidotographer to interviw friends, family and coworkers so our future gandchildren can met grandpa! He will also interview Peter ( husband) what are you proud of, what do you wish you had done, etc.
His “wake” while he is still here! I can’t believe I am talking like that -like he will be gone soon but that is what I read! true – short from a miracle
Dear Susan, welcome to our extraordinary family but sorry you had to join us. I was lucky to have Teddy for 5 1/2 years after diagnosis he passed 1 1/2 years ago at 78 years old. For those 5 years he called it our Honeymoon. You are doing all the right things, just being there and shoing him how much he is loved and that you will be OK is the very best you can do. I would have a talk with the ONC about the symptoms he is having. Hospice can be called in up to a year ahead of time and having them in does not mean the end. They will make him more comfortable and your time will free up a little more to just spend it with him. I am curious as to where he has been treated and is he under the treatment now of an ONC? My Teddy’s biggest concern was me and that I would be OK so the best advise for you I can give is to be very strong! Keep letting him know you will be OK. You never know how strong you are until “strong” is the only choice you have!
P.S.ospice has a booklet that has an excellent section on what to expect, please ask them for one. I know Teddy followed it pretty closely. Big hugs coming your way and know that we are all here for you.What are your two situations? I assume you both lost you hsbands to this very wild cancer? How fast?
Susan,
Just be with him, love him and share things. Make memories that will help you through all of this. I only wish I had been given the time to do all of that. Just do the best that you can. That’s all anyone can do. Your bitter sweet get together will mean more than you know to all involved.
Love & Hugs,
DarlaThank you, yes have tried all of the above without much sussess. Thinking there is a major obstruction. Thinking of checking with the oncologist on Tuesday.
Yes bitter sweat party, but a chance to say goodby to friends while he still feels…..fair and looks good. Just wish I knew what to do for him!
I too would like to follow Marion in welcoming you to our special group. I don’t have much advice to add, but agree that I too wish I had been lucky enough to do what you are doing. I think it is something that will always mean a lot to you.
We are a very interesting group with a whole lot of knowledge when it comes to this disease and know there will always be someone to help and support you and your family along the way.
Take care and stay in touch. Let us know how things are going.
Love & Hugs,
DarlaWelcome Susan, to the club no one wants to belong to, but is happy to have found. I much understand your total bewilderment and disbelief of the situation. Susan, symptom control is available for you husband such as: pain medication, diuretics for water retention and, if your physician agrees (not all do) an abdominal tap (Paracentesis) can remove the fluid from the peritoneal space (the area between the belly wall and the spine, in the abdominal cavity.
Susan, I wish that I had done what you are preparing for: A Celebration of Life. What a bittersweet affair, powerful and yet the most meaningful of all. Please, know that we are here for you to help guide you, support you, educate and “hug” you. I am sure that our great members will chime in real soon and welcome you also.
Hugs,
MarionFive months ago we were sailing in the BVI’s and three months ago my husband had chest pain, leading us down a path to stage four cholangiocarcinoma, tumor on his liver and many many spots all over his lungs!
How does this happen! He just turned 61 last week. We have to many plans for many years to come! Because we have read all the stuff on this very agressive cancer, we are having a Celebration of Life party for him this weekend.
I am so thrown off by all of this, my world feels like it is spinning out of control. I need to know what to expect. His belly is growing, he is having elimination problems, water retention. We have met with a doc from the local Hospice Program about care and gave good advice but dealing with this, seeing him SO uncomfortable I am looking for advice.
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