carol58

Hi Pam, you’re always in my prayers. This must be so hard to see your Mom like this. Let me know if her itching intensifies. Charlie has had an awful time with that. Be careful on the road and take care!

Praying for better tomorrows,
Carol

Thank you Kris and Rose for bringing this up. Unfortunately for us, the actual sex doesn’t exist anymore because of all the medicines, weakness, progression of the disease. We so miss that. Nothing better than that and all the things leading up to the actual act and after when we laugh and giggle and fall asleep in each other’s arms. I know Ron, I want my Charlie back too. It’s miserable going without all the little kisses and hugs and pats through the day…married 26 years, always affectionate and loving. It feels like some kind of withdrawal. Thanks for letting me share – never thought I could say that. Love to all.

Carol

Rose, I’m sorry you’re having pain. Charlie has never had a stent, but from reading on the site and your description, that sounds almost unbearable. I know how I’ve had to fight for so much with this cancer for Charlie. I would advise insisting that the doctor see you ASAP to get this stent problem under control. Sorry to be so blunt, but just sharing from our experience, we’ve had to do that more than once, not with a stent, but with many other things. Do you have someone close that could also advocate for you and help you since you are the one actually dealing with the stent pain? Once you get the stent under control, I’m sure you’ll feel so much better. You may want to look into other doctors. We switched doctors early on and Charlie says if we hadn’t done that, he wouldn’t be alive today. Not sleeping and the pain you’re having are totally unacceptable and your doctor needs to address it today. I could write a book on itching because that’s been one of Charlie’s major problems. We started with Benedryl, all the prescription antihistamines none of which worked. We tried about 20 different creams. Gold Bond is the only one that worked and it was only temporary. We then moved on to Remeron which didn’t help, but he continues to take it because it helps a little with sleep. By the way, I went to the doctors with all of this from my own research. (A lot of doctors don’t know much about cc.) I read on this site from Sue in the UK that Rifampin was the only pill that helped her husband. Our oncologist refused to prescribe it because it might cause some liver damage and we thought well at this point, the liver is pretty damaged already, Charlie just needs some relief. I’m not talking normal itching. His was intense to the point it was taking over his life. His eyes, ears, face, scalp, everything itched and it was really lowering his quality of life. So I asked the Hospice doctor (Charlie’s at home with Hospice coming weekly) and he prescribed it. It took a few weeks, but with 2 150 mg capsules a day and 30 ml Phenobarbital at night, the itching is pretty much under control. Just my opinion and in our case, but the antihistamines and cream don’t really address this type of itching. The Phenobarbital affects the central nervous system and somehow short circuits the message of itching from the skin to the brain. But the Rifampin is the real winner with us. Rose, you need to be seen before March 10. Please keep us posted. Praying for you.

Carol

Hey Kris, I’m so glad you’re feeling good. I’ve been worrying about you. I know you miss Peter as we all do. All good thoughts and prayers to shrink the tumor!!

Love, Carol

Hi Rose, if you continue to itch, you can email me directly or on this site and I can give you ideas on all the things we’ve tried on Charlie. I hope you get some relief soon from your stent. I know you must be reeling from being newly diagnosed. There are so many caring people here to help you with questions, support, whatever you need.

Carol