Topic: Nearly four years survivorship
I'm sorry that I haven't been around lately. Devoncat's passing and a few others (off the top of my head: Teddy, Rick, Dave) were devastating and I had to take a break.
This coming August will mark four years of survivorship for me. I know that is not typical and I thank God every day that I am still around. I have been in Stage 4 for about 2 1/2 years now with mets to the lungs. The liver has been ok-ish for a while but I'm seeing some negative signs that all is not well in that area. But since there is nothing I can do about it, I'm just letting it go.
I've been through about a dozen or so different chemo regimens, until my oncologist ran out of tools in his toolbox. I am currently under hospice care. Everyone is different with hospice care. For me, it means that I don't have chemo anymore, and I have a nurse, a social worker, and a massage therapist who visit me every other week. All meds go through the nurse. It's been working out ok.
One thing that I need to remember is that I am ill. I feel normal and do things, like weeding my backyard, then I collapse from exhaustion. I need to learn to conserve my energy and be on a more even keel.
Anyway, I am so very grateful that I have had the opportunity to see my youngest graduate from high school, my middle child get married to a wonderful man, and my oldest graduating from college in August. I have been given the opportunity to be with, support and love my children and my parents. I've also grown so much spiritually. I try to see the best in things, and God's hand in all things - whether we understand or not.
I pray every day for a cure, for those of us struggling as patients and caretakers, and the wonderful people behind the cholangiocarcinoma foundation. Every one of you are doing the best you can. Thank you all. God willing, there will be a cure, and soon.