Wednesday, September 16, 2009

Patients never fail

I dragged myself to a support group meeting on Monday night. They're all nice people, but most of them are having a very different MM experience from mine, and all of them are married, so I usually leave feeling even more lonely and alone than I was before. I was put on the spot, not thinking fast enough to just say "I really don't want to talk about my situation." So I briefly mentioned the clinical trial, but that I'm still reserving the right to cancel that at any time, and to refuse further chemo if I so choose.

If any people on the planet might understand why I'd consider stopping treatment, I would expect these people to. I didn't expect a stamp of approval, just a little understanding. But they were all alarmed and horrified, and they just couldn't stop beating me up over it. "Well, I just don't think you should ever give you. You just never know, there could be a new drug tomorrow!" Thank you, Harry Sunshine. But you haven't been in treatment FOR 18 F***ING MONTHS! It was a huge disappointment to me. A not-very-supportive support group.

Supernurse G did offer this little pearl that I'm clinging to like a lifeline: "Treatments can fail to work for patients, but patients don't ever fail treatment."

As it happens, this was her last support group meeting. She's been overloaded for some time, and she's earned a break. She has done this for three years, on her own time. I keep saying I'm going to quit, but end up going back. This time, I left feeling that I really can walk away, and I probably will.


tim's wife said...

La Cootina,
I'm sorry you had this experience.
People need to respect the opinions of others even if it's not their opinion and even dealing with the same health issue, no one has the same experience. I'm going to a support group meeting today.
I usually leave a little depressed too 'cause everyone is so much older than me and doesn't have a young child caught up in it. I only go once in a while now partly because it sometimes hurts more than heals. Today should be a pip.
I have an infection in my lip that made it blow up to 3x its normal size. I look like Bubba from "Forest Gump" 'cept it's the top lip. How embaressing! Hope you get one of those small acts of kindness hit you that restores your faith in man. I find they usually happen just when you need them the most. :o)

Anonymous said...

Sid said...

Hey Cootie,
I know how you feel.
I stand along side you, not in front, not behind, but along side.
Here's a cyberspace hug, and another.

Unknown said...

La Coot--This made me sad. How cruel for people not to respect your decisions. I am always inspired by your honesty and I file a lot of your nuggets away in my head for reference.

I know as a caretaker--which is currently just a matter of being cool--I want to push all my advice and beliefs on my husband. But I know that all decisions about his life and how he lives it have to be made by him. If he wants my opinion, he asks for it.

It can be difficult for me to just "zip it" at times, but I think I've gotten pretty good at it. And you and your friends are part of the reason for that!