Yesterday I discovered a new level of pain. I was caught completely off guard and really suffered until I stuffed some extra pain meds into my tube. Owwwwww!! My burned up throat was on fire. Just yesterday morning I mentioned to RadDoc that I may not need more than what I was currently taking. Wrong!! About 6 hours later I had that script at the pharmacy to be filled. I was told it will get worse; I didn’t listen. I’m supposed to be pro-active in regard to pain and nausea and I’m better now. Don’t be a friggin’ hero. Drugs are my friend.
On another note, I’m getting the hang of the feeding tube. Of course every new success has to breed a new problem and mine is my skin. This info is more for a future feeding tube patient but I want to write it down while I still have a brain. I have to attach the tube someplace or it would just hang from the middle of my belly. It has to be somewhere on your chest. Unfortunately even paper tape starts to irritate the skin after a short time. I have blotches and scabs already that I can’t imagine becoming anything but worse. I needed a way to avoid tape on my skin and I came up with this: I have some old tank top undershirts, often called wife beater shirts. I rigged the top of the tube to the top of the shirt and clamped it to the shirt with a large paper clip. The alligator kind. Fits perfectly. I tape the bottom part of the tube (where the release clamp is) to the bottom of the shirt and that took care of the skin issue. Nobody taught me that and that’s my first disappointment in the care I’ve received so far. I’m teaching them! Not good.
Feeding is becoming routine. There’s no way I can call it eating. Eating is an enjoyable activity. You actually get to taste what’s going down. Feeding is just that: stuffing nutrients into a living organism. All I “feed on” now is Boost. I still drink water and juice by mouth to keep my swallowing going but eating as I know it is done for a while.I have two weeks of treatment to go. Two more with Chemodoc; eleven more with RadDoc. The lump on my neck is almost non-existent. Yippee!!!!! Mucous problem is just totally disgusting. I’m gross. I think I've lost about 5 pounds. The skin on the left side of my neck looks like it suffered 3rd degree burns. I’m still told the side effects will continue getting worse and I AM listening. New pain patch, refilled nausea drugs.
Ready to get to the finish line.
Hang in there Ben. We admire your strength & ability to keep your sense of humor. So, are you an actual wife-beater or do you just dress like one?
ReplyDeleteHi Ben and Joanne
ReplyDeleteYou are almost at the finish line. David and I are sending you warm thoughts from Canada. It really helped us to concentrate on a few months out and picture peaceful times at our cottage. I hope you can get some peace this way.
Janis Kelly
@Don-at times I feel beaten but no where near how beaten Ben feels at times! Ben is incredibly resilient and moving forward with the end of treatment within sight.
ReplyDelete@Janis-yes, I can see the end date on our calendar and in my mind. The first 5 weeks have gone by quicker than I imagined, maybe not so for Ben. I'm trying to plant the seed of an actual vacation before 2011 is over with Ben. HE IS GETTING THERE FOR SURE!!! Thanks for your insights and help along the way.
@Ben-you know how proud, inspired and impressed I am by your endurance with the beast. You are not gross by the way. xxx ooo
-joanne