Beware the Well Intentioned

Day 61

Being at MDA is sometimes like I imagine being in jail would be. You are surrounded by three types of people generally speaking, Staff, New Patients and Old Patients. Replace the word "patient" with "inmate" and you have an institution. Most of the older patients (older as in more experienced) are exactly what you would expect from people who have been locked up in a institution for years. Like jailhouse lawyers they are always full of what they imagine to be helpful advice.

For example while we were in to do blood draws this morning we ran into a older patient who had come into MDA originally to be treated for lymphoma a year or more ago. The lymphoma went into remission but she developed leukemia as a side effect of the chemotherapy. She zeroed in on Ann and proceeded to strike up a conversation with her.

Well not so much a conversation as a list of things that she needed to do. Everything from putting our story on the Internet, to questions to ask our Doctor, to what type of letter to write me if she dies. Cheerful is not the word I would use. Needless to say I terminated the conversation as quickly as possible with this "helpful" soul.

But she is not the only one. MDA is literally choked full of these well intentioned meddlers that lie in wait for the unsuspecting to accidentally make eye contact or worse utter a friendly greeting. Once they are engaged they can do enormous amounts of damage before you can get away from them.

For example:

Busybody "What type of leukemia do you have, Deary?"

Ann "ALL t(4;11) positive."

Busybody "I haven't heard of that one. I have <insert horrible disease here>."

Ann "me too and they have to use <insert medical treatment here> while I'm in treatment."

Busybody "Oh no dear! You can't let them do that to you! My friend had that done and she never got any better. What you need to do is <insert stock advice about medicine, prayer, money ect>!"

See what happened? Older Patients (and some Staff ) pass off rumor and anecdotal evidence as actual tested scientific or medical knowledge. MDA's clinic structure actually encourages the spread of this type of disinformation, by packing large numbers of idle patients together with little to keep them occupied. I'm not criticizing MDA in this, it's hard to imagine how they could alter things in order to prevent it. in fact they do just about everything in their power to avoid it.

But a word of cation to anyone who is ever diagnosed with cancer, or has a loved one who they escort to a cancer center - don't ever listen to anyone but your Doctor.

More updates later today