Topic: Tough week
My husband, John, hilar cc, is having his PTCD drains replaced today with metal stents. His radiation/ chemo was supposed to start Monday, but has been delayed to have these stents placed. HE's had several blockages and two infections with the PTCD's so hopefully this solves the problems.
While I have no issues with the drains when they need to be un-capped it always upsets John and makes him feel really nauseous. I wish I could help him get over that - I keep assuring him that it doesn't bother me in the least to empty the bags or change the dressings. He's never been sick a day in his life and has always been there for me when I was ill with depression, recovering from a heart attack and other surgeries....I've always been the patient. I wish I could take his place. He!s been a little down this week and It breaks my heart. We have so much to be thankful for and that is what I keep focussing on (as does John). I think he's just realizing how long this journey is going to be and it's all bit overwhelming. We were both just saying this morning that we need to see CC as a chronic illness, not a life sentence. Our eldest daughter is getting married the end of April so that will be our focus for now. Even though he is on the Mayo protocol for a liver transplant, I am not pinning my hopes on that as the only positive outcome. Whatever happens we'll face it together and try to make the most of every day.
So, Next week he'll have a renal scan done and hopefully the radiation simulation so he can start the radiation/chemo ASAP. I just keep thinking that they found the tumour in July but there has been no chemo or radiation done yet (because of high bilirubin, infections and drain issues).....let's just say my imagination is running wild. I am doing a lot of self talking lately and working hard to keep fear out and let hope in. I appreciate this wonderful site, it's very hard to talk to others about cc as no one seems to have ever heard of it. That's another mission of mine; educating as many people as I can about cc and raising awareness. It's such a little thing, but it's what I can do for now.