Don't Go to the Doctor Alone

You have heard the advice but maybe, like me, you thought, “Well really, I already know what they are going to say.” Or, “I’m such a private person I don’t want someone there for such an intimate conversation.  Or maybe you are the caregiver or the patient’s good friend and you thought, ‘Well, I don’t want to intrude”, or “Isn’t her son or daughter the best person to be there?”

But this week I got a big reminder of why we want someone with us at the doctor for any big news in CancerLand. Maybe it’s the start of he process—the diagnosis meeting or the one where they will lay out the treatment plan. OR maybe later in the process and it’s time for an update. I beg you: Take someone with you. OR offer to accompany your friend.

On Tuesday I went with my friend to what we knew would be an important appointment. There had been difficulties and then a lot of tests. Something was up. Now to get the news.  She has a daughter and a son and while they will need to be in future meetings, she was going to hear news that would upset them as well.

Here’s why it’s important to have an advocate with you. My friend is very smart, super competent, manages a pretty complex life on her own, but as soon as she heard the word “cancer” from the doctor it was as if her hearing and processing decreased by at least 70 %. That’s what happens. And it wasn’t completely new news. We both knew it was going to be some kind of cancer. We had talked about it ahead of time. She had made a list of things to ask, and options, family info etc. She was very smart about the whole process. But then, sitting next to her, I could feel her mental processing drain away. But because I was there, and I had her list I was able to say, “Now Anna would like to ask you this…and this…and

wondered about that.”

And I was her scribe. I wrote it all down: the doc’s answers and the instructions he gave—the next appointments and the order in which to schedule them and when to come back and which lab for the blood work.

If you were in the room you would have thought she was getting all of it. Anna is super poised and well-spoken. And she didn’t cry or shrink. But by the time we walked to the checkout area, all of the details were gone from her head—but I had written them down—for the scheduler and for Anna and her family later.

So if you are the patient—take a friend or advocate, and if you are a good friend, insist on going along to take notes—be the research assistant or CancerLand amanuensis. It’s a fabulous service and much better than making lasagna.

Keep Asking Questions

In yesterday's New York Times I read this great article (link below) by Theresa Brown--an oncology nurse who makes an excellent case for asking and asking and asking. She describes a breast cancer patient, Amy Berman, who had to make a clear decision about her treatment and life plans after a stage 4 diagnosis.

The point of this is that at the very time that your head is spinning with fear and anxiety and even hope you have to step back and think, feel and discern what is right. I do think that's pretty hard to do for most people. We want to hear "I'll cure you" and we want to hear, "This can be fixed".

I think what it takes is thinking and talking beforehand. Talking to loved ones and talking to friends --even those "What would you do if...?" conversations can be helpful.

And then also including family and friends after the diagnosis and during the research/second opinion phase. But--and an important but--you have to be be mindful about whom you include. You want the family and friends who will support your desires--not their needs and fears.

Take a look at this article and maybe forward this link to family and friends to initiate a conversation about, "What if..."

Here's the link:


http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/?smid=pl-share

Poetry Month: Raymond Carver

Do you remember the moment when you heard, "It is cancer"? Raymond Carver shared this moment from his life and his cancer in his poem,

What the Doctor Said:

He said it doesn’t look good;

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them.

I said I’m glad I wouldn’t want to know

about any more being there than that

he said are you a religious man do you kneel down

in forest groves and let yourself ask for help

when you come to a waterfall

mist blowing against your face and arms

do you stop and ask for understanding at those moments

I said not yet but I intend to start today

he said I’m real sorry; he said

I wish I had some other kind of news to give you

I said Amen and he said something else

I didn’t catch and not knowing what else to do

and not wanting him to have to repeat it

and me to have to fully digest it

I just looked at him

for a minute and he looked back it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me.

I may have even thanked him habit being so strong.

--Raymond Carver

Why Doctors Die Differently

Look at this article from Sunday's Wall Street Journal. Doctors--even those that treat cancer--make different choices than their patients. Because they know some stuff. This is a great reminder of a key concept in cancer caregiving and care. A doctor will only answer what you ask and you have to ask very specific questions to get very specific answers. If you say, "Will this chemo help me?" the answer might be yes. But if you ask, "Will this chemo specifically and significantly improve my life expectancy and quality of life?" the answer might be different.

Read this. Food for thought.

http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html?mod=googlenews_wsj