martes, diciembre 26, 2006

Why didn't anyone tell me?

In the latest entry on Alicia's Story, she talks about the way the Cancer Center works, and the way that individual patients can slip through the cracks.

A few weeks ago, as I was sitting in the lobby of the ...infusion center, a woman stepped up to the check-in desk, in tears. From what I could hear, she was from out of town, and it was her first chemo treatment.

The receptionist was telling her she couldn't have the chemo -- her infusion -- without first seeing her oncologist, and he was booked the rest of the day.

The woman had made the infusion appointment before an appointment with her oncologist. That's not how it works. Doctor appointments are much harder to make, so patients make those first, then infusion appointments. Anyone who is a regular at the Comprehensive Cancer Center knows this. This woman wasn't, and didn't.

She stood at the desk, wringing her hands, saying over and over, "I didn't know. Why didn't anyone tell me? Why didn't anyone tell me?"

The receptionist said, "Honey, I'm sorry no one told you this before, but this is how it works," and then told the woman the exact order in which she should plan her appointments.

This really hit home for us. Different people will give you incomplete information or tell you contradictory things. Like during the first chemo treatment, our nurse told us we didn't need to make an appointment or check in to come in for L*'s neulasta shot the next day. Then, we came in the next day, she said hi. We sat waiting for her to come give the shot for about twenty minutes before asking one of the other nurses where she was. "Oh, she went to lunch." This person then set us up with another nurse to give the shot and clarified that advance arrangements and check-in are necessary, and you should set that up during the chemo visit. That sounds pretty calm as I write it down right now, but really, cancer patients and their families are often at the end of their emotional rope, and it's just so wrecking when you're trying to do everything right, but you keep coming into these situations where it feels like you don't know what's going on and nobody tells you.

And it is really heart-breaking when you here the people around you stuck in these impossible situations. (I mean, unless you get all on your high horse about it and say to yourself "I knew to make the appointment! I did it the right way!")

What's more you also hear the people around you who are going through similar treatments but have to go to work tomorrow, or have to drive themselves home from chemo, or who are all alone in this. It makes you cling tighter to each other, but later (like now!) it makes you think about what you can do to help some of those people who need help.

One thing Alicia mentioned in her post is the Cancer Resource Center, and the services they offer. It is really important to know what's available, but--we learned--it's also important to know what's not available. There are flyers for all kinds of support that just don't exist. Example: Support group for LGBTQ with cancer. Sounds right up our alley, right? We call the number. The group is currently defunct for lack of interest. The person coordinating is currently on vacation. OK, fine. L* really didn't want to make another trip into the city and meet strangers anyway. Support group for lesbian partners. L* hands this flyer to Ktrion with a wink and a nudge, taking care of her caretaker. Ktrion calls. The group is currently defunct for lack of interest. The person coordinating is currently on vacation. Okay, assuming this person ever comes back from vacation, how will they ever know whether or not there's enough interest to restart the group? (mumble, mumble, grumble)

One day while we were waiting around in the infusion center for the chemo nurse to come get L* all set up, I was looking around some of the other flyers. I got real upset when I found a flyer for a support group for husbands of women with breast cancer. I was full of self-righteous homosexual rage: "why do they get this resource and we don't". L* pointed out, with great practicality, that for all we knew, the husband group was no more "real" than the lesbian ones.

1 comentario:

George, Group Admin dijo...

Interesting perspective. One that someone without the cancer experience would never considered, both the scheduling conflicts and the necessity for support both for husbands and husbands (we all have partners would be a great group name for this new support group needed).

I was in the same position more than 16 months ago when I was recovering from surgery for merkel cell cancer. So rare that I was not able to find anyone that had survived this cancer. I started a group for one hoping to find one more person of the 400-600 that had been diagnosed in this history of this disease. There are now 99 members to our merkel cell cancer discussion group, a majority are survivors.

Group Admin & MCC Survivor