Newly Diagnosed
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My husband had whipple surgery, he was in good shape for it, he was ok for a month or two after then went downhill ever since. They can’t manage his pain nor figure out why he is in so much pain, did nerve block and it didn’t work, now they are talking about some spinal implant. He looks in bad shape, drugged for pain, every day is awful and we all can’t take it anymore. I pray that you and so many others do not fall into the scenario my husband is in. It is brutal and draining and a long road…to what? or when? Stay positive and optimistic please! So far after all I have read, I just don’t see any case as ugly has what my husband is living through and he doesn’t want to live anymore but is not even close to it getting him!
Kmwmsm:
This brings back so many memories. One can only imagine how a cancer diagnosis makes your loved one feel. As my husband’s caregiver, I know that it was a hard slap up along side of my head, and I cannot even begin to think how it makes my husband feel.
As Tom’s caregiver all I can do is to be supportive and let him know that I am there for him. There will be times when your husband will seem to be pushing you away, and that is OK. Just let him know that you are there for him when he needs you.
Do all the research that you can on this cancer, and keep detailed notes of questions that you want to ask the doctors. Be involved in your husband’s care. He will have good days and bad days. So take advantage of those good days and do things with the children. Build those memories.
Your situation is a bit different as you have young children. Tom is 63 and I am 58. All of our children are grown with families of their own. Our littlest grandson is now 13 months old. He was only 2 lbs 9 ozs when he was born. He is named after his Papa, and the sad thing is that he will probably not be able to go fishing or to do things with his Papa.
Our dreams of growing old together will most likely not happen because this cancer will take him before his time. However, with that being said, Tom was given a 6 month prognosis, 10 months ago! We continue each day thankful that we have another day together.
I just asked Tom if he had any advice for you and your husband. He said,
“Lean on your wife, she is there for you like no one else will be. I strongly advise that after your surgery, even if they tell you that you have clean margins, INSIST on at least a few rounds of chemo. If I would have had chemo, I may not have presented with another (inoperable) tumor. You will have good days and bad days, take advantage of the good days. Tell your family and friends to come and visit, even if only for an hour. Make sure that your wife has time to herself, even if it’s only to get out for an hour. Turn to your faith and always try to be positive!”We are so sorry that you and your husband are on this journey. You will encounter a lot of twists and turns, ups and downs. It is an emotional journey that no one should have to travel.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom (My husband and Cholangiocarcinoma)
I’ve been there, having had whipple surgery 5/25/10. this will be a very trying time for both of you, it will bring you closer than you have every been. your husband will move to rely on you to
be alert in discussions with doctors, hospital staff and home health care. With all of them stress from the surgery he will find it difficult to be able to deal with everything that will be coming at him from the medical staff. My wife kept very good records during the period leading up to diagnosis and through my recovery she continues to keep records to bring to my dr appointments. One doctor told her jokingly she was the “Gestapo” keeping such a good watch over me. Then he laughed and said, this is what we like to see. It helps the doctors to evaluate the recovery and side effects when then can see what is going on at home, by this I mean nausea, med side effects, appetite, temperature, blood pressure, etc . When I look back and we talk about things, I hear myself saying “I don’t remember that”.
The diagnosis is like a kick in the stomach and it is traumatic, but you will both find so many caring people to reach out to through this experience.
My best to you both, Ray / North CarolinaGood morning.
I’m sorry to hear about your husband. Before you schedule surgery, I would urge you to get an opinion as to whether or not he could be in the TRANSPLANT protocol for this type of cancer. Many hospitals do not offer this protocol so my advice is to get to one and get their opinion. Usually once surgery happens a transplant cannot be done. My mother had her transplant at the Mayo in Minnesota and is cancer free. Of course there is always a chance for recurrence with transplant, but the odds are MUCH LOWER than recurrence after surgery alone. If your husbands tumor is under a certain size and has not spread, he may very well be a candidate. I just read on this site earlier this week of another man around your husband’s age going through the protocol at Jacksonville Mayo.. Utah, Nebraska, Barnes in St. Louis, Mt Sinai and Chicago are a few of the places that come to mind that offer transplant. Please look into this option.. if your current location does not offer this protocol.. they may not have told you this is an option!!!
AshleyKMWMSM, sorry you had to find us, but we welcome you to our family. You will find lots of support here as we all share in our journey with CC. Cancer is a roller-coaster with many emotions. I think just being there for your husband is the best advice I can give, and to focus on the positive.
Knowledge was also important to me. I re-searched all the information I could find on the internet and in books, as I wanted to be as well-versed as I could when talking with my doctors and family. And in knowing what my next steps were in my journey.
The fact your husband is a candidate for surgery is huge in this battle. Mine was caught early, and I too was a candidate for surgery. I had liver resection surgery, and I am now a CC survivor of 6+ years.
My prayers are with you and please keep us posted.
Dale
Dear KMWMSM welcome to our wonderful family! So many of us have walked in your shoes and it is truly a tight fit. You just need to let him know that the 2 of you are taking this journey together. So far his news is wonderful in that he can have surgery. Where is the CC located and where are you located. The best thing is the game plan and you are so lucky to have one in place. With that said, show your husband that you want to be his advocate and start reading up on CC because knowledge is powerful. Perhaps he is too frightened at this point to show you what he is really feeling. Try to show him that you are strong and that he can count on you and lean on you.
You might also try Dr.Giles at the top of our pages. Just send him a question and he may be able to answer the question of why you are being pushed away.
Try to show your husband a positive attitude, I know it’s hard but you will get used to it and it will become second nature to you. That will help you to stay strong. Please keep us posted on his condition.Hello there! I have been in your shoes, and still am. The best advice I can give is to just be there for him. Tell him that you have to live in the moment, and that you will live in that moment with him. Try to help him to see the positive. The good news is that he can have the surgery! Try not to focus on the what if’s. Dave was disgnosed on March 9th 2009, and had a resection on 04/02/09. He had several complications, but he was able to have chemo and radiation, and as of today, he is back to work, and taking it one day at a time. We are scheduled to go in for a scan 10/29 of this year. I have a journal on Caringbridge that I started back when this all changed our lives if you are interested in readng it.
Hugs to you and your family.
Hello Kmwmsm:
Welcome to the cc club that nobody wants to join–but you will find informed loving support from many people on this board and posters to this board, as I have.
You may become your husband’s treatment advocate in addition to the emotional and spiritual support I know you are trying your best to give him. The information and links you’ll get here will help you learn more about treatment options from surgery to chemotherapy to radiation to alternative treatments to naturopathic supplementation.
My male perspective (an old man’s) is that I appreciate information as well as loving support–when I’m able to take it. I guess being patient with the patient to come around is the task upon you, and sometimes only God can give you that! Your husband is truly blessed with a wife to lovingly care as you do.
God bless you and yours.
-Tom
I am a cc survivor. I was diagnosed in July 2008, I had chemo, radiation, and 2 liver transplants. My first question was will I see our only child graduate from college. My doctor said I would and on May 9, 2010 I did!! Just being there is all the help he needs. This is a very bizzare time, it never happens to you. I am Gods walking miracle and with out prayer, great family and amazing doctors I am still here.
My husband is 35 years old and he was diagnosed a month ago with cholangiocarcinoma. He went for a second opinion today and while the doctor said it is cancer the good news it has not spread anywhere. He is a candidate for surgery. We will schedule it tomorrow. I was just wondering from the people who are dealing with this…How do you handle it? He is pushing me away and I don’t know how to help him. I want to be there for him but I don’t know really what to do. We have two young children and I want him around to see them grow up. I would appreciate any suggestions.
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