“I have cancer. I’m not dead yet!” was a statement I made many times before, during and even after my hospital stay at MD Anderson.
I am talking about it now because some of my friends are experiencing major illnesses including cancer and it is difficult for them and their families. I hope by sharing my experience, I may help them and their families avoid some of the unnecessary stresses that we went through.
One of my family members would answer questions for me when my friends or doctors would ask questions to me. It was so bad that I couldn’t choose my food, apparently having cancer meant to some people who I couldn’t make any of my own decisions. I couldn’t talk to my doctor and nurses without being cutoff and interrupted, answers that were not mine nor accurate were given to the doctors. I felt like that family member thought I was helpless and like I was already dead. I was exhausted from the cancer and from the surgery and healing processes going on in my body, and it was even more exhausting trying to overcome the family member to communicate to my nurses, doctors, orderlies. I had my speech, I had my brain and I felt like I was being totally dismissed and disempowered. It was disrespectful of me, it was a horrible feeling. I tried to convey my feelings to that person, and it seemed as if I was heard, but it kept happening. At first I questioned myself… was I sicker that I thought?
Cancer is pretty icky, but seriously my cancer was not infecting my brain speech center and I could talk. So… Nope, I wasn’t incapable of communicating… I was just slow at it because I was tired. I got frustrated of being prevented from communicating. That frustration grew and I got angry. I was not a nice person at times. Then, finally I cried for real, out of the frustration and anger. But anger didn’t help solve anything. If anything it made things worse because I appeared to be “losing it”. That just made my family try harder. It was a vicious cycle.
Finally one day, when that family member was in the bathroom, I called the nurse into my room and asked her to ban that family member. She was a bit incredulous. I asked her to get a social worker or family psychologist and have them come, I wanted to speak to the shrink before that family member could come back into my room. I felt horrible, but I had to so something.
Finally, I was able to explain my feelings and the counselor was able to talk to my family. That family member expressed that they were only trying to care for me, to help me rest, to take the burden off. The counselor tried to help that person realize that even though, Yes, I was tired, and Yes, it took me a little longer to answer the questions, that they were not helping me and that they were not respecting me, they were making me feel totally helpless and frustrated and thus angry. My family felt totally helpless too. They were just trying to help.
Disempowering a patient who wants to take part in their own care can be very harmful for their healing process. You may not know you are doing it.
The counselor explained that behavior was actually making me feel sicker and more helpless than I was. The counselor explained that my family needed to pay attention to me when I told them, “I can answer”, “stop talking for me”, “I have a brain, stop talking. I want to make these decisions”, or “please go away, I want some quiet and privacy”. The counselor helped me realize, I was the one sick and I was the one that needed rest and respect and that it is OKAY to want alone time. And, I could nicely ask for the space, that I shouldn’t feel like I was a bad person because I needed it and finally that it was definitely ok to demand that and get the nurse to help me reinforce it.
This situation really is about you, the patient, and what you need.
The situation got a little better and in the future when I got tired of it all, I politely asked my family to leave my hospital room and they listened more often. Sometimes I asked them to get me a drink, or some food, or something else. Sometimes I simply asked them to go take a break for a while. Usually they respected those requests. But sometimes they ignored my polite verbal indicators that I wanted some space and so once in a while I called the nurse. We got through it.
I believe, we actually built more respect for each other because of it. I don’t doubt they love me. I also believe they finally saw me as an adult for the first time (I was in my late 30’s when this happened). I learned it’s okay to need people and it is also sometimes necessary to get a third-party (like a counselor) involved, when communication breaks down. It can really improve situations. Hospitals have specialists just for these situations. Use them, that is what they are there for. This situation really is not uncommon at all.