Monday, September 30, 2013

Talk to the Doc

The lesson for this one seems really obvious, but that doesn't mean we get it all the time.

Researchers interviewed 374 survivors of Non-Hodgkin's Lymphoma about their Health-Related Quality of Life (HRQOL) -- basically, how much their disease interfered with their "normal" lives (and I know "normal" is a funny choice of word, cause nothing is normal after that diagnosis).

Specially, they wanted to know about their physical, daily, emotional, social, and sexual lives. Did the lymphoma cause any problems to their bodies? Did it affects them at their jobs? Do they get depressed? Did it make it harder to get close to people, or stay that way?

Important questions, and probably not the kind of thing that a doctor will ask about, apart from the physical stuff. I think that's partly because they tend to be so focused on the disease, but also because it's hard for them to deal with. (There's no kinase inhibitor for emotional problems, after all.) It's up to patients to start those conversations.

Some numbers: 94% of the patients said they would start a conversation about physical problems. 82% would start one about daily problems. 76% for emotional issues, 43% for social issues, and 49% for sexual issues.The reasons they gave for not talking? Probably not surprising: Nothing can be done about it. It's not the doctor's job. They were talking to another clinician (another medical doctor or a mental health specialist, I presume).

In some ways, it's a little scary that people aren't willing to share problems with their oncologist, especially if the problems are obviously related to the lymphoma. On the other hand, there's no indication that the patients talked to someone other than a clinician. For some problems, I think it's legitimate to talk to, say, an online support group. That certainly helped me quite a bit. As much as I love Dr. R, there are questions he can't answer -- and those questions have a lot more to do with the social and emotional aspects of cancer than the physical ones. I want to know if that low-grade fever means my condition is getting worse? I'm talking to my oncologist. I want to know if it's normal to feel like people at work are treating me differently? I'm asking another patient.

Do I want people at work to avoid me? Absolutely. I kind of wish some of them would leave me hell alone. But that's not the point.

The point is, we all do better with a wide support network. Sometimes a doctor helps. Sometimes a spouse helps. Sometimes a semi-anonymous stranger on the internet can help. The bigger point is to get help when you need it. Especially when a key part of your support network isn't doing the job.

This all made me think about someone I know, a cancer survivor, who didn't tell anyone about her cancer, at least not right away. She had some valid reasons for it, as I found out later. But she only started sharing after she couldn't hold it insider any more. She started opening up to a few people, including me, and that helped. But I couldn't help but wonder if she would have been better off with different choices.

I think it's important that we be advocates for ourselves. For me, that means learning as much about Follicular Lymphoma as I can, so I can ask the right questions and understand my treatment choices.

But it's just as important to be emotional advocates for ourselves. That means surrounding ourselves with people who are going to help us, whether they are friends in our lives or virtual friends online. And if they can't help. we need to find people who can. And if we can't get rid of them, then we need to talk to them and make sure they give us what we need form them.

There's more than just a doctor involved in all of this. But as someone who is interested in us, and who has some expertise, that doctor seems like the perfect person to practice some communication skills on.

Talk to the Doc.

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