A Period of Adjustment (Cancer Story, Part 4)

I suppose it's time to get back to my cancer story. Part 3 left off with me coming home from the hospital.

At first, the worst thing was getting used to having a bag attached to me. I am SO fortunate though, to have a wonderful, caring, loving husband. I am so grateful for that. He emptied my colostomy bag after we'd been home for a while, and did it without a second thought. Not all men would do that for their wives. Many would want to, but I just don't think that they all could actually do it, but MINE DID!

While I was in the hospital he went out and bought a potty chair for me to use, so I wouldn't have to go up and down the steps. That was a big help, because I still had about 40 staples holding my incision together. The first two nights I was home, I slept in the recliner in the living room, and Ted slept on the couch right by me. He continued to take care of my colostomy bag too. What a guy!

I was prone to becoming overwhelmed during this period of adjustment, and would just sit and burst into tears about all of this. It was hard on me emotionally, along with being difficult on my family. Fortunately my mother did not say anything, like "snap out of it" or any other goofy comment. She just let me cry.

On my second day home, an absolutely wonderful home health nurse stopped by. I could not have gotten through any of this without her. Not only was she a help with the physical aspect, but the mental as well. I still had not had to purchase any ostomy supplies, and she brought some each and every time she came. My colostomy appliance (as I learned to call it) would still leak often where it had been adhesively attached to my skin, creating a big mess. Every time it leaked, that required a complete change of things and that could take up to 45 minutes. The nurse was absolutely fabulous about doing things. I would get up to get her something and she told me to just sit there and she would get it (like a wet paper towel, etc.). I was so thankful to have a woman like her.

On my third day home, Dr. P himself called to tell me that the pathology report had come back. He said that the cancer was stage 2, and it had only been identified as stage 2 because it had been obstructing. If it had NOT obstructed, it would have been a stage 1. There was NOTHING in the lymph nodes, which was fabulous news. Why didn't that make me feel terrific??

On the fifth day home, Ted took me to Dr. P's office to have my staples removed. He was so kind to me, and made me feel a little better. He really took his time with me and that made me feel good. He also asked me which oncologist I wanted to see. I told him I wanted to see Dr. S, the oncologist who had treated my father-in-law when he was diagnosed with lung cancer. Dr. P's office was going to make the appointment for me and let me know when it was.

Ted had taken that entire first week off of work and it helped me so much. I would never have gotten through it without him. I was in so much denial. With him taking care of my colostomy, I could just sit there and look away and pretend it wasn't happening to me.

Dr. P had given me a prescription for ostomy supplies and I had to call a pharmacy to order them. I really had no idea what I was doing, even though I had a list of all the things I needed. I finally got them all ordered and they came in the next day. All I can say is THANK GOD FOR INSURANCE!!!!!

Without my insurance, the ostomy supplies would have cost me around $400, and at that time I didn't realize it, but those supplies would last about 3 weeks. With my fantastic insurance, the supplies cost me....$0!

Ted still took care of all the changing of the appliance, but I had finally started to empty it on my own. It was a little messy at first, and latex gloves and Clorox wipes became my best friends. The show they made us watch in the hospital about colostomy bags and taking care of them was SO fictitious! A woman wearing tight shorts with her shirt tucked in supposedly had a colostomy. If you knew mine was there, you could always tell by the bulge. Sometimes it was a small bulge, sometimes it was a big bulge. Nevertheless, it was a bulge.

Each new appliance was supposed to last 5-7 days...mine would last about a day and a half, sometimes 2 days during the first couple months. By trying different techniques we were able to get it to last about 4 days by the end, thank goodness. At the beginning, my skin was getting raw all around the stoma (the actual opening) from using the various wipes, adhesive and powder.

This is what was used each and every time the appliance needed changed.

I'll warn you now...the next picture is pretty gross. It's a picture of my actual stoma with nothing on it. I took the picture when I was changing the appliance. This picture was taken after having the colostomy for about 5 months, so my skin was not too raw all around it anymore.

Okay, this is enough for one day.