I've been worried about you for a bit now. As the one with cancer, I would hate to see my husband stress about my symptoms and side effects as much as you have. It's obvious you love your husband a great deal, but you have to take care of yourself, too, and accept that having cancer means there are some unpleasant things you won't be able to fix or take away. I wish you could and if loving the patient enough could will them away, your husband would have no pain or problems, but unfortunately, it doesn't work that way. It's good to try to find help for the things he's going through, but it's also important to accept that you won't always be able to. It sucks, but that's just the way it is. If it was my husband who was sick instead of me, I'm sure I would be as anxious as you are and working as hard to find relief for him. I respect that, but I still worry about you. I'm sending virtual hugs your way.
I finished radiation/Xeloda a week ago. I had to miss a couple of doses of Xeloda because of a fever over 101. They stopped it while they tried to figure out what was causing the fever. I imagine a lot of patients miss a couple doses here and there because they forget or fall asleep or feel too ill or whatever.
I had the tailbone pain, the rectal spasms, the butt cheek pain, etc. The tailbone pain is getting better. The rectal spasms have stopped altogether. My butt muscles are still a little sore, but not too bad. Just hang in there a couple more days and he'll start to feel better.
My nausea is gone for the most part. I'm not even taking nausea drugs anymore. My appetite has increased a bit and I'm starting to eat more normally. Still small meals but more variety.
When I had abdominal surgery back in 2010, I was told in advance by the surgeon that I would have two tubes coming out of my lower abdomen attached to drains (plastic bottles basically) and they would stay in for two months to collect excess abdominal fluid that was produced in the healing process. I was totally freaked out by this and dreaded it more than the surgery. But, it happened, I got used to it, I learned to deal with it, and it became no big deal. I had it again after my surgery in 2012.
If your husband has to have a permanent ostomy, he will probably dread it a lot beforehand, be a little overwhelmed by it at first, and hopefully, adjust to it eventually and be glad the cancer is gone. Try to enjoy the time in between radiation and surgery and not worry what's to come. I'm not freaked out by the surgery, but I'm terrified of the infusion chemo. I'm trying very hard to just enjoy this time when I feel pretty good and not worry about what the future holds. I hope you and your husband can do the same.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4