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.

More About the Book: AfterShock

A few days ago I wrote about the book, AfterShock by Jessie Gruman, Ph.D. It is such a perfect handbook and bedside/tote bag companion for day one to day 100 of any serious health diagnosis.

If you or a loved one gets bad news about cancer, heart disease, stroke, ALS, MS etc. This might be the best, first thing to read. The first chapter is on shock and can help you normalize—and manage –the unmanageable feelings and crazy thinking.

Each chapter is short—therefore readable by someone in shock or crisis, and her language is straight. She does not use the word “cuddle” once. She explains what to ask the doc, what to ask the nurse, what to ask your family and what to care about and what to ignore in the short run.

AfterShock has a chapter on work: what to say, who to tell, how to proceed with Human Resources, and what your situation may be like from the HR and coworker perspective. It helps to know that.

One of my favorite lists that Gruman includes is the Personal Health Kit. I love seeing this here because it took me a year to get my chemo/caregiver kit just right. This is the bag (shoulder straps please) you will take to every doc appointment, test, chemo visit and lab. In addition to the obvious medical stuff you include your wrapped candy, treats, pens, book, pashmina, cardigan, phone list (better than your phone directory), phone charger, and sunglasses. (Yep, at least once you’ll need the sunglasses and you will have them right there.)

As I mentioned the other day, this is a book to buy and have on hand. If you are over 40 someone you know will get bad medical news this year—friend, neighbor, co-worker, family member. And you will have the perfect thing to give them on their first day of after shock.

What to Do When You Get Really Bad News

You may remember how you heard it.

 Were you in the hospital? A doctor’s office? Did you get a phone call? Maybe it was well and compassionately done, or maybe the doctor fumbled the news and blurted out your diagnosis or prognosis.

What so many people have said was how quickly the fog descended. They remember the dissociation and fear flowing on top of reason. When I received my cancer diagnosis I was young (in my twenties) and alone and massively in denial. I was more concerned that my married “boy friend” not know about my health issues. I definitely did not have a list of questions or a notebook or a plan.

When John got his preliminary cancer diagnosis I was in the curtained room of the medical suite, and when he got the definitive diagnosis of Stage Four cancer I was there in the new surgeon’s office as well. We were both shocked, both times—sure that such a healthy, fit guy with zero symptoms could have such a serious cancer gobbling him up.

I began writing “Love in the Time of Cancer” that year to process my feelings, to document what it was like to be in love and cancer at the same time and to become a new and better resource for others than I had been able to find for us.

You’ve seen here lots of helpful websites, articles and books. Today I want to suggest a book that is new to me that you will likely want to have handy for your family or for a friend or coworker.

The book is called, “After Shock—What to Do When the Doctor Gives You a Devastating Diagnosis.”  The author is Jessie Gruman, Ph.D. She is a scholar, researcher and the founder of the Center for the Advancement of Health—an independent health policy institute.

This is the book I wish I’d had and the book your doctor should hand you but probably didn't. And this is not just a cancer book—the guidelines, checklists and stories are helpful for a diagnosis of heart disease, stroke, multiple sclerosis, ALS—and of course, cancer.

I think this book is also something you can do for a friend or coworker when you have no idea what to do or when boundaries prohibit getting too involved—maybe at work or with an ex etc.

In the next few posts I’ll share some of the highlights and what I think is especially helpful from “After Shock”.