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The period of time when you are waiting for a diagnosis is brutal. There's really no other way to describe it. As a nurse-turned-patient, I really had no idea just how difficult this waiting period really is. Waiting for my diagnosis of FBC (f-bomb breast cancer) was simultaneously heart-wrenching, nerve-wracking, confusing and downright scary.
Here's how it goes:
You have unusual symptoms.
You wait.
You decide to call your doctor for an appointment.
You wait for the appointment.
You see the doctor, who schedules tests.
You wait to take the tests.
You wait for the test results.
The tests are inconclusive and more tests are required, but before scheduling and taking the tests, insurance approval is required.
You wait for approval.
You wait for the office to schedule the test.
You take the test.
You wait for the test results.
You are referred to a specialist, but she can't see you for a month.
You wait again (and again and again).
You wait.
You decide to call your doctor for an appointment.
You wait for the appointment.
You see the doctor, who schedules tests.
You wait to take the tests.
You wait for the test results.
The tests are inconclusive and more tests are required, but before scheduling and taking the tests, insurance approval is required.
You wait for approval.
You wait for the office to schedule the test.
You take the test.
You wait for the test results.
You are referred to a specialist, but she can't see you for a month.
You wait again (and again and again).
Get it?
I wish I had been told (by anyone!) "Brace yourself, Hollye, because this waiting period is insanely and obscenely hard, hard, hard."
Waiting for a diagnosis is extraordinarily difficult because it brings up an array of feelings that are hard to hold: anxiety, fear, sadness, frustration, impatience, and powerless, to name a few.
Does it help to tell someone who is waiting for a diagnosis that these feelings are normal? Perhaps. A little bit. But then, naturally and automatically, our parasympathetic nervous system (fight or flight) takes right back over. Our primitive brain responds by desperately trying to find a safe way out of the situation, even though there isn't enough data to make a decision yet.
Does it help to tell someone who is waiting for a diagnosis that these feelings are normal? Perhaps. A little bit. But then, naturally and automatically, our parasympathetic nervous system (fight or flight) takes right back over. Our primitive brain responds by desperately trying to find a safe way out of the situation, even though there isn't enough data to make a decision yet.
And here's the other thing... You know how time goes so quickly? How it's already July and we don't know where the year has gone? Well, when you're waiting for a diagnosis, time literally stops. It does. Not. Move.
While I was waiting for this news, I did a few things that helped (a little bit, anyway):
- By resigning myself to the idea that I was waiting for a real cancer diagnosis, I rationalized that I could no longer be shocked by hearing the actual cancer diagnosis. My anxiety didn't disappear, but it considerably dissipated.
- I gave myself 30 seconds of calm, then 30 seconds of despair or whatever I was feeling. Over time, I had longer feelings of calm and resolution.
- I took my 4-year-old daughter to the park and played. There is nothing like playing with a child to keep you centered and present.
- I went for a long, hard run because physical exertion frees my mind.
- I told two people. That's it. I didn't want to have to tell people without any explanation.
I vividly remember the exact moment when I received the FBC diagnosis. It feels like it happened not just yesterday, but 15 minutes ago. It's one of those events in your life that is forever embedded in your memory. I remember the doctor, the room, the smells, the temperature. All of it.
Now, here's the crazy part: There was a strange relief when I heard the official diagnosis. Yes, I said relief. That's how BAD the waiting was for me!
The best thing that YOU as a friend can do is be present for the person who is waiting. Don't make suggestions about what a person "should" do. That doesn't help. Just be there. Presence is the best present (Silver Lining).
To read more about Hollye's holistic and humorous journey over, around, above and below breast cancer, please visit her blog, The Silver Pen (www.thesilverpen.com). You may email her at hollye@TheSilverPen or follow her on Twitter @hollyejacobs.
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