Usage - This is my personal diary. You may link other web pages to this post, but you may not re-post or reuse this information without written consent from me.
Disclaimer - I am not medical professional. I am describing my experiences in hopes I may help others facing this cancer.
Leaving the Hospital on Friday
As we prepped to leave the hospital, the nurse explained the techniques of using the bed bag and leg bag to L, while I tried to get out of the open-air gown and into clothes fit for humans. As I stood, I felt my first real pain. A sudden, deep, gripping pain ran through the right side of my abdomen. The surprise jolted me as much as the pain itself and I tried to fight off the feeling of faintness, but I had to sit. I told L and the nurse that I felt like I was fainting, and I saw the nurse give me a sideways glance. L quickly told her I react this way to pain sometimes, which is true if the pain is intense. After a few minutes, I recovered and stood again, without that pain. We were ready to get me out of the hospital!
I was grateful to be released. I was also grateful to the nurses who cared for me. They were excellent and I told the one who was with me I’d hug her if I could (forbidden in Covid times).
As I was wheeled to the car, a few worries crept in. Would the ride home jar me and cause pain? What if we got into an accident or had car trouble (remember, it’s a 45-minute drive)? After we crossed a railroad track and navigated a pot-holey street, I relaxed about the ride causing me discomfort. I still worried about the other stuff though.
The ride home was uneventful, and I was soon in my own bed. No IVs, no noisy people in the next room, no overly cheerful people dropping by to ask me who I am, where I am, etc. before drawing blood. Just my own home, my own bed, no white stockings, and L and C with me. I still had not passed gas, so I put a heating pad on my abdomen and began to feel things moving in the right direction.
I do not remember much about the rest of the evening, but I do remember a problem during the night. It was October, so the nights were a bit chilly. I did not pull the blanket over me before I went to sleep and I got cold during the night. I suddenly realized I could not reach the blanket to cover myself. I had five glued-together holes in my abdomen and doing a sit-up to reach the blanket was not possible. I could not bring myself to wake L and ask her to cover me because she was so tired, so I was a bit chilly for a while. Lesson – get everything you may need during the night within reach before going to sleep.
The First Week
I had prescriptions for Colace (stool softener) and Bactrim (antibiotic, twice a day for seven days). On Saturday, I began eating soft, solid foods. I took only two Tylenol during the day, several hours apart, and then took two at bedtime just to be sure I slept through the night. I also learned that pressing on my stomach when I had to sneeze/cough repressed the resulting discomfort. I noticed a trace of blood in the urine (normal), but that stopped sometime during the day.
The first night of changing from the leg bag to the bed bag would have been hilarious if nerves weren’t so on edge. I have an engineering degree and L has an education degree, so you'd think we could handle switching a catheter tube from one bag to the other. Instead, we were like the two stooges. So, let’s keep it simple by following these steps:
1. Make sure the bag is detached from the catheter before walking away with it.
2. Make sure the release valve on the bag is closed before connecting the catheter tube.
3. Crimp the catheter tube while it’s disconnected from the bag to eliminate drips onto one or both person’s arms and hands.
4. Put the leg bag on so the transparent side is facing outward and you can see when it needs to be emptied.
5. Do not attach the leg bag so it is across the front of the knee. Makes it difficult to walk.
6. Do not bend over to help while your helper is standing up. A face colliding with the back of a head is unpleasant.
Seriously, though, experiment with changing bags. Some say they sat on the toilet while changing. It was easier for us to change in the shower. I also found I could put my foot on the rim of the toilet, pull the leg bag valve over the water, and open the valve to empty it.
On Sunday, I sat on the couch the whole day, but had to remember to walk around every hour or so to avoid blood clots in the legs. The rest of the week was pretty uneventful, with noticeable improvement every day. There was a slight ache in the bladder area, but it came and went. By Thursday, eight days after surgery, the pulling sensations in my abdomen were almost gone and I took Tylenol only at night, just to make sure I slept without interruption.