When I was first diagnosed with “leukemia”, I had no idea exactly what it was. I knew that it was a blood cancer, that some people had bone marrow transplants and that often people died. I was alone in the emergency room for almost four hours, before Joe was able to get there; I had an eternity of time to think; a ton of unanswered questions, and no information to read. I asked the nurses repeatedly for information; finally one of them printed a very generic explanation of leukemia, off of the internet. They themselves knew very little about it; or at least that was their pretense.
Once I finally got to my room, late that night, I was able to use my laptop and start research of my own. Once again, what I found was very generic, vanilla information; not what I was looking for. It is my opinion that if someone is diagnosed with a serious disease or condition, they should be handed booklets or pamphlets answering all of the questions that a newly diagnosed patient has.
Having these things at your disposal would help to alleviate the fear of the unknown. Even if the information was unfavorable or scary, knowing what the possibilities are, would help to ease your mind.
Fast forward four months. I have seen two doctors and am currently seeking medical advice from a third. Can you guess why? It is because I was unable to get my questions answered. Fortunately my third doctor was able to answer all of my questions and seemed to agree with my own theories regarding my body and treatment. Thank God for him and for my persistence!
As I am leaving his office, and going down the hallway to make my next appointment, all along the wall are dozens of booklets. Low and behold, the Leukemia & Lymphoma Society and the America Cancer Society has put together many wonderful informational booklets. The booklets that I grabbed were:
1. 1. Chronic Myelogenous Leukemia
2. 2. Acute Lymphoblastic Leukemia
3. 3. The CML Guide
4. 4. After Diagnosis
5. 5. Sexuality and Cancer
6. 6. Understanding Drug Therapy and Managing Side Effects
I was almost giddy when I saw them, yet I wondered why the hospital, or neither of my previous doctors, had not made these booklets available to me. If I had been given these booklets in the hospital, my mind would have been eased, not to mention the minds of my friends and family. I imagine that all of my nurses, that I questioned incessantly, would also have been relieved if I had had this informational reading material. Look how easily they could have shut me up!
So tell me; why in the world, when there is such great informational material available, wouldn’t doctors and hospitals make it available to their patients? Is it just because treating patients has become so conventional, that they are just treating the condition or disease, or is it because they don’t wish to incur the cost, to make these booklets available? Or is it just plain ignorance or insensitivity?
I give kudos to the Leukemia & Lymphoma Society and the America Cancer Society for gathering this information and putting it together, so thoughtfully and concisely. Now if we could only get the medical institutions to distribute this information to the patients, then all of their efforts could be recognized and appreciated.