Cancer Diaries III

When I checked out of Glendale Memorial Hospital, they set me up with a home care nursing service. A physical therapist comes twice a week and a nurse comes twice a week. My first impression was that it was, at least partially, a Medicare scam. However, the physical therapist is helping me rebuild muscle and regain my balance after two weeks of basically laying on a hospital bed, so I'm finding some real value there. I suppose I was put off when the first representative of the company came by and asked me to sign a bunch of papers without telling me what they were offering. In fact, he seemed offended that I would even ask. His only response to my questions about what they do was that Medicare was paying. I threw him out of my house. But they sent someone else-- someone better equipped to talk to someone for whom that isn't enough of an answer.

When it was time to think about having a nurse come to my house, a lot went through my mind. First and foremost, of course, was the experience I've had of the role nurses play in health care. The doctors map out a strategy but the nurses are primarily responsible for carrying it out. They are on the front line and the nurse is the one you deal with all day. Although these percentages are not really meant to be scientific, I found that about a third of the nurses I dealt with at Glendale to be absolutely beneficial to my well-being. There aren't words to convey my admiration for their dedication, patience and diligence. They made my experience of the hospital bearable and contributed significantly to whatever progress towards regaining my health I made. Another third, I found, were just doing their jobs. They might not have been incredible or life-saving but they were there and they didn't make things worse. Another third did make things worse. I didn't run across an angel of death but I did run into nurses who certainly weren't buying into the premise of hospitals being patient-centric.

I don't want to get into anything too graphic or hard to stomach, but I recall being desperate for a towel one day early on when I could barely breath, let alone talk. I begged the nurse for a towel. She insisted on having a debate with me about why I needed it. I nearly melted down.

One of the things about my two weeks in the hospital that I found so difficult was the sense of dependency. You are hooked up to machines and you can't get out of bed unless someone comes over and unhooks you. You need to go to the bathroom? You press a button on the side of the bed that alerts the nurses' station. The idea is that a nurse or an aide comes. Sometimes they do... sometimes it took over half an hour, sometimes considerably longer. One nurse who cared for me several times, Mary Grace, seems like a very dedicated person. She appears to be 100% focused on her patients and making their lives as bearable as possible in every way she can. I hope everyone I know, if they ever need a nurse, gets someone just like Mary Grace. I noticed that when she was my nurse, I never waited 30 minutes or 45 minutes. She came or she sent someone right away. Others... I got the idea that they had their own lives to lead and had their own worries and tribulations and that the problems a patient might be having were just somewhere on a priorities list, sometimes not very high on it.

More than one sympathetic staffer warned me that if I wanted to regain my health I should get out of the hospital as fast as possible. At the time, those suggestions seemed not just reasonable but they made perfect sense to me. A rather strange doctor inserted himself into my treatment inappropriately and insisted I start using two drugs I had never heard of. I ran his ideas past my oncologist who, though she's a pretty unflappable person, flipped out and told me not under ANY circumstances. When I told the doctor, he decided his best approach would be brutal manipulation... so he told me if I didn't do what he told me to, I could die. I was mortified to be treated that way and reported him immediately. Another doctor just shook his head sadly and said, "He means well..." He repeated it twice. The implication was that the doctor wasn't competent. Weak, debilitated and vulnerable, this is no way a patient expects to be dealt with by a doctor in a hospital. It helped me make up my mind that I had to get out of there as quickly as I could. I know these for-profit hospitals make their money based on procedures they can bill Medicare and insurance but this was absurd... and abusive.

I'm back under the care of my own doctor and her team now-- and her carefully laid out plan to get me healthy. I'm going to put this little series of posts aside for a few days, think more about it and start up again as I'm better able to focus.