The Waiting is the Hardest Part

30 03 2011

Ring, phone, ring! Photo by Amy Rauch Neilson.

I’ve got half of the equation, but don’t know how to figure out the other half.

Following my CT Scan Monday, the Radiologist said my results should be read by Wednesday.

Today’s Wednesday.

I just figured out that I don’t know how to get my results, short of waiting for my appointment with the doctor on Monday. I made the mistake of not asking the question, pinning someone down as to how I might get my results.


My results could be sitting in an in-box somewhere, or on someone’s desk, days before then.

I called my oncologist’s office. Busy place. It’s almost impossible to get a human. If you want to speak to a nurse, you have to leave your name and number and wait. There’s also a section of the recording that announces that test results won’t be given over the phone — that you have to make an appointment to get them.

I have an appointment. But not til MONDAY!!!!!!!!! Please don’t tell me that if the results are in later today, tomorrow, Friday, that you’re going to make me wait that long. That would be sheer agony.

Beaumont’s protocol in this regard seems vastly different from that of the University of Michigan Hospital. That’s where I had my breast cancer surgeries and testing done following my 2006 diagnosis. Chalk one up for U of M — the nurse would call me immediately whenever a new test result came in. I could depend on that. That gave me a little bit of security during a time in my life when I felt the floor could open up at any moment, that I could fall through a trap door. And yes, they gave test results over the phone.

I never had to wait, worry and wonder if perhaps the results were in and someone just hadn’t gotten to them. Or that they were waiting for me to come into the office — still many days away. I knew that as soon as they had them, I’d have them.

So, today, right now, that’s my challenge. It doesn’t feel good. In fact, it feels awful. I feel helpless. And it pushed me over the edge. Lots of wracking sobs over here today.

Will the scan results make that big of a difference? Yes. My first scan post my first three rounds of chemo should indicate where we are in this battle. Are we in hot pursuit? Making great progress? Or, do we need to restrategize, change tactics? They could indicate whether I’m going to need a longer chemo regimen — or, my hope, shorter. To say that my life hangs in the balance would not be overly dramatic.

Knowing, whatever it is, has got to be better than the limbo I’m in.

But I’m kicking myself. I shouldn’t have put myself in this position — allowed so much of myself, my emotions, to hinge not only on the results, but on getting them today. Shouldn’t have set the bar so high.

But that’s what I did. And here I am. Waiting. Crying. Trying to calm myself down. Feel something other than terror. Or of being so alone.

Trying to accept that the results will get here when they get here, and that they’re going to be what they’re going to be, whether that’s today, tomorrow, Friday, or, ugh, even Monday.

Trying to do a normal day of life — whatever normal is these days.

Copyright 2011, Amy Rauch Neilson



14 responses

30 03 2011
Carol Clemens

You are not alone, Amy. we are all waiting right along with you. Does the Dr. have an email or fax?
If so, send your blog to him/her. You’ll feel better for doing something. Then go write a chapter for your book about the emotional roller-coaster that fighting cancer entails and what the medical system could do to make it easier!

Love, Carol

30 03 2011
Amy Rauch Neilson

I love the way you think, Carol!

30 03 2011
Amy Rauch Neilson

I do have quite a bit of advice for the medical system…indeed!

30 03 2011
Linda Stanislawski

Praying for your peace and that a way to get your results before Monday will become a reality.

30 03 2011
Debby Neilson

If anyone can find a way to get your test results early it’s you. My thoughts, prayers and love are with you.

30 03 2011
Alison Schwartz

Amy – so tough for you – it’s amazing how one medical system can have it so right in regards to giving patients information they are entitled to, and another so wrong. Everyone who reads your posts is keeping everything crossed for wonderful test results. Sending a big, virtual hug – Alison

30 03 2011

Hold on and as someone said we are all waiting with you….today tomorrow, Friday, the weekend till Monday if need be. xxxxx

30 03 2011

Amy, remember your gift! You know – the gift that seems to allow you to break the odds and get things other people can’t. I bet they will bend the rules for you! USE YOUR GIFT!

30 03 2011

Amy, that feeling of being out of control and someone else knowing the information but making you wait – an agonizing wait – is simply awful. Could you get an emergency appointment with the oncologist? Or what would they do if you go sit in their waiting room and just wait for them to give the results “in person” – froma nurse or the doctor. Really? They would turn you away knowing that this it creating such angst? That simply can’t be healthy for you – hopefully someone will “get it” that this is not acceptable and you simply must have the answers.

30 03 2011
Tami Fink

Hi Amy-
I’ve been meaning to post a message for a while, but I had to wait for my roller coaster to slow down for a minute. Still waiting!
I’m in the same boat as you, or at least at the same marina, just in a different row. My path is similar with some twists. I won’t get into it now but if you want to follow my story, it’s at
Just wanted to let you know that there is a strategy to booking scans and getting results. I try to schedule my scans a day or two before my dr. appt. to avoid the extra anxiety.
Being in limbo sucks, big time. I also learned that there is a reason they call us ‘patients’. We have to be incredibly PATIENT on this journey.
The only good thing I can suggest is to remember: The results are just as likely to be good as bad, so focus on the good. 😉

30 03 2011
Carolyn Morris

Knowing or not knowing the results will not change the outcome. The truth is??? You have the ability to create the outcome you desire. If you see “game over”…then the game will be over…BUT…if you see what others see and hope for you, then your life will just be beginning. You have a wonderful opportunity to teach others how to live. You will have bad days…that is certain…but remember this: Your worse day is never comprised of waiting around for test results…it’s not hearing the words “I Love you”…friends, family, people who read your blog, all have a connection to you…some of us may know personally what you are going through….(yes…I had breast cancer when I was 30 years old, I was the Mother of 3 small children at the time) but some may only be empathetic…but we all share that same energy…and that is love…I’m told it is the most powerful force in the universe. Now, I know we are not family or even know each other…but that doesn’t matter. We are women…and women have a connection to each other. We all care very deeply about those closest to us. It may manifest in very different ways but it’s never-the-less apparent. So, Amy??? take back your power…don’t wait around for test results…you are a survivor and whatever the outcome is you will be OK, because you have people who love you. Hospitals are impersonal buildings filled with (for the most part) compassionate people who take blood and administer tests, etc….but sometimes they become that which we measure life and death by. We must not let that be our fate…take the tests…take the drugs…take the advice if you want to…and keep on living…don’t wait to win the million dollars before you start spending a little on yourself:) take care…I’ll be reading! You are a great writer…very expressive.

30 03 2011
Deborah Ann Peters

Waiting is very hard. It does not matter if it is waiting to see if the financing went through for a new car, or a new house, or if you are waiting to see if you get the lead role in the play, or like you, waiting for the results to your tests. Waiting is hard. None of us can put ourselves in your shoes during this waiting period, but we all are waiting along with you. Just know that there is alot of prayers and love coming your way during this time.

30 03 2011
Bob adams

Amy… You’re waiting??? That doesn’t sound like you. When have you ever “waited” without raising hell? How insensitive. I’ll bet their lawyers told them to wait for the next appointment to advise patients. (Sorry, lawyers, I know there’s one or two out there that ARE sensitive.)


31 03 2011

I hear ya loud and clear! Thinking of you AMY

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