As has been famously stated, “A hospital is no place for a sick person.” The goal for my anticipated discharge home was, of course, to recover enough from the surgery to be able to get around on my own. My doctor set another, more challenging, milestone. Due to the excision of my colon, I had to “void” before I could go home, and without the help of diet or enema so that there would be no danger of my stitches coming apart. This waiting game wore me down as the days dragged on. I was met with many challenges.
Two days following surgery it was time to have my urinary catheter removed. This meant that I would now have to get out of bed and walk to the bathroom, initially with help. Unfortunately it also signaled a new and humiliating problem that would last through my hospitalization, and for a couple of weeks beyond. When I stood up to go to the bathroom, it was as if someone left the spigot open on the dispenser, leaving gravity to do its thing. Not good. I figured the catheter had messed me up somehow, although my doctor was not very reassuring that this happened all the time, as I hoped to hear.
Normally, I consider myself to be one of the most emotionally stable people I know. This experience opened up a new world of loneliness and despair. I was in a bad place psychologically throughout my hospitalization–worry about my future life, my work, chemotherapy, and my new bladder problem among other things. I did many internet searches about ovarian cancer which didn’t help because nothing sounded hopeful. Early on, I looked for TV shows that would portray someone worse off than me. I finally settled on “My 600-Pound Life” as the antidote for my pain. I thought this was my own warped sense of self-pity until I recently read in Susan Gubar’s book that she too, searched her mind for someone worse off that she was! I was surprised. I also found it hard to pray because I couldn’t concentrate on anything. So besides a few short pleadings to deliver me from this place, (I found it hard to pray for a BM even though I knew He would understand) I was also spiritually empty.
Food began to be a problem. I love food, and am known to devour food of any quality or quantity with dispatch. So this was a whole new world of disconnect between my brain and my stomach. Initially on liquids, I enjoyed the soups and juices they sent. I progressed quickly to a “soft” diet which is basically a regular diet with no roughage. The menu the hospital had was extensive because there was only one menu for the entire stay. As time passed, my appetite decreased until it was almost non-existent. I ordered some things that sounded good but when they arrived, they did not resemble what I thought that food should look like and couldn’t eat it.
Near the end of the week I was starting to go stir crazy. My hospital room window looked out on the massive parking complex and construction work in progress for a new parking structure. I could also see the dialysis facility across the street where I was working at the time my life was turned upside down. I missed the active and productive person I was just a week ago, and this daily scene was a constant reminder. I wanted more than anything at that time to be able to go outside and breathe the air and feel the sunshine. I knew I couldn’t walk that far so I needed help. I asked a volunteer who came by offering books and such if they could take me in a wheelchair outside. Nope, couldn’t do that–maybe a nurse could do that they suggested. I knew darn well that nurses didn’t have the time to do such things. I asked a hospital volunteer from my church if they could take me. Nope, can’t do that. I cried that day. I am not a crier but I cried.
This brings me to some suggestions I have to anyone who is anticipating a hospital stay or is visiting family or friends in the hospital.
- Visitors can be a boon or a bust. First, let me be clear that I appreciated everyone who came to see me in the hospital because that meant they cared about me and I needed to feel that. I also enjoyed the text messages and calls on my cellphone, sometimes even more than actual visitors because of my appearance. My suggestion to visitors is to let the patient steer the conversation to where they want it to go. Stay in the moment–what does the patient need today, right now? Is there anything I can bring, anything I can do for you here or at your house? For the patient, don’t be shy about telling people what you need. I asked a friend from work to bring me nail clippers and she also brought me a smoothie which was the most delicious thing I had ever eaten and I will never forget her for that. Thanks Doina! My brother Kevin came to see me every day. He ended up being the one to take me outside in a wheelchair and pushed me around for probably half a mile in the heat. He also mowed my lawn for the rest of the summer. I saw a KFC commercial on TV and the chicken tenders looked appetizing to me, so I asked him if he could bring me some. He brought me that and a gigantic A & W root beer float too. It was more than I could eat but I ate a good amount of it. When he left the hospital that day (Saturday) I’m sure he wasn’t even out to his car before LIFT OFF happened in the bathroom! Glory Hallelujah–the slaves had just been freed!
- Take charge of managing your own care. This may seem like common sense, but it took me a few days to figure it out. When I was most vulnerable, right after the catheter came out, I was in the bathroom with a nurse who was telegraphing to me she would rather be anywhere else in the world than where she was. (Me too sister!) I was needing help and I was also dripping something from somewhere that looked like diluted blood. I couldn’t figure out where it was coming from. I soon learned that there was a drainage tube in my side (I didn’t even know it was there) that they had failed to empty that day. It was leaking all over everything. From then on, I had the technician check it and empty it every day. I made sure all supplies I needed, especially in the bathroom, were stocked and within reach. They were good employees for the most part, but they have a lot of people to tend to and can’t be expected to know everything you need. One day I wrote a special request on my menu–cottage cheese and fruit plate–that sounded good to me at the time. They sent a nice one. I could have, and probably should have, requested to speak with a dietitian or diet tech about things I felt I could eat, but I never made that request. As a dietitian myself, I was a bit disappointed that after a prolonged stay, and the fact I had written things in on the menu, that no one came to talk to me on their own.
Sunday was emancipation day. After the doctor came in and removed the drainage tube, I was up and dressed and ready to go. All I needed was the pharmacy to send up my prescriptions and I’d be on my way! I waited and waited and waited. Oh, one more thing to remember about hospitalizations–you will probably be waiting for something your entire stay!