December 4, 2018 at 9:58 am #97860bonParticipant
I am very very sorry for your loss.
I understand exactly what it feels like to have a husband with cholangio. It took a long time for my husband to be diagnosed – he was experiencing symptoms for two full years – mostly pain under his rib cage. The doctors told him it was either pancreatitis or gall stones. It wasn’t until his urine turned dark and he was starting to get jaundiced that an MRI was ordered – and a klatskin tumor was suspected. It was the ERCP that caught it. All 11+ cm. of it.
This was March of 2017. We were told to expect four months by two doctors, a year by another doctor. My husband was fortunate that the cancer hadn’t spread into his liver or anywhere else. Still, we were deeply depressed – or at least I was. My husband put on a brave face and said he had lived a wonderful life. I was near hysterical – we do everything together and have been married for 28 years. Very difficult time for us. Believe it or not, my dogs have been an incredible source of comfort for me – they get me out of the house and out and about, and snore by my side during the day and night – visiting family and friends helped too.
At the moment, the cancer appears to be in remission – one doctor is very pessimistic and reminds us at every visit that my husband is “terminal,” the other doctor is more optimistic – three recent scans show a tumor of “indeterminate size” and no mets anywhere (PET/CT, CT and MRI). The pessimistic doctor said she thought there was still “microscopic cancer” in there and wants him on chemo at all times. The optimistic doctor says no to chemo. We are, as always, hopeful – but still meet with a palliative care doctor every six weeks.
All we can do is carry on as if life is normal, but it will never be the same again.
Please take care of yourself and any children if you have them. It’s really tough and I though I’d be a widow by now, we were told last year husband “wouldn’t see Christmas” let alone the new year. I planned for a future alone – and still think about it. We know every day is a blessing and things could change tomorrow.
Best to you and yours,
BonDecember 3, 2018 at 3:56 pm #97858bglassModerator
Thank you for sharing Joe’s story and the lovely picture of you both. Please accept my condolences and prayers for your loss of your beloved husband.
There are not words adequate to console what you have gone through in watching Joe cope with this diagnosis. Please take comfort in knowing that your support and care throughout his illness made a huge difference for him.
Our community here can offer you understanding and support. Please know we are here for you.
Take care, regards, MaryDecember 3, 2018 at 1:11 pm #97857FlycatmooseParticipant
My husband Joe died of this awful cancer after only 5 months. He was diagnosed in March and died on August 10th at 3:10am… I was not there when he died because I expected him to live so much longer and I had planned to spend the whole weekend in Calvary with him…….Joe was the healthiest person I knew… he never had a health issue and because he was so healthy, it took the doctors 3 weeks to diagnose him. Only after process of elimination did they find he had intrahepatic cholangiocarcinoma. Every test came out normal including his colonoscopy and endoscopy and even his blood work… His liver levels were just slightly elevated but not enough to even take notice…. Joe turned 53 two weeks before he died. Watching him go down hill, suffer from this disease ( he had bone mets and fluid in his abdomen) and lost an enormous amount of weight in such a short period of time was horrible and feeling helpless was the worst part… I would cry all of the time… He went into a Clinical Trial with Drug 270 with Sloan Kettering but never made it to his second week… because his kidney functions started failing, he ended up in the hospital at Sloan Kettering where they told him it was too late, the cancer was too advanced and that they were not going to continue the clinical trial. We both cried together but I did not know what to say to him…..it was awful….At this point, he told me he wanted to go to Calvary…. I knew he was going to die but I could not even think about it. He was the best husband ever… I had planned to live another 30 years with him at least and grow old with him and now I feel so lost without him… I miss him more than words can say….I entered grief therapy right after he died or I would have lost my mind….I’m so sorry for all of the people that are fighting this awful nasty relentless disease… My prayers are with each and every one of you…..
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