The period of time when you are waiting for a diagnosis is brutal. Everything about it. Waiting for my diagnosis of FBC (f-bomb breast cancer for new readers) was simultaneously was 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 (& again & 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.
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 our daughter, a/k/a Sweetly Six (who at the time was 4 3/4) 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).
You hit the nail right on the head. Just BEING THERE, what a difference that makes. Love, love, love this blog, it truly is a Silver Lining.
Thanks a million, E.B. Your words mean so very much to me! Hollye
This is so beautifully and passionately written, Hollye. Your words are supportive and help us to feel less alone. And it's true, Our Own Presence is all we really need. I always find that when I fully commit to staying in the present moment, it makes the journey a whole lot easier and a lot less scary! I really liked your 5 things! Oh, and the photo too!
Thank you so much for your kind words, Kim. All my very best! Hollye
Dear Holley,
As it has been many times before, your words of wisdom come in sync with my life. Today, a dear friend of mine had her appointment to schedule her lumpectomy. As we know, she is freaked out. I'm so grateful for your advice today. Brilliantly timed.
In my world of fbc, I finally get my second stage of reconstruction July 30. I had to wait almost a year due to the ever-shrinking flesh from the radiation treatments.
Perhaps, if you have information, or have experienced back pain due to the surgeries, wearing expanders for a length of time, radiation, lack of range of motion in the arms and how these procedures decrease range of motion, your advice or research on this subject might be helpful. I experience chronic back pain along the rhomboid muscle due to the tightness through my shoulders and chest. Youch! Hugs to you, Diane
Dear Diane,
THANK YOU so much of your note. I'm so happy to hear about the timing of this post…and am sending all of my best wishes to your friend and to you as you do your next surgery.
Here are my posts on the surgery:
https://www.hollyejacobs.com… https://www.hollyejacobs.com…
I hope that they help.
If you have any specific questions, please let me know and I'd be happy to write about them!
Take good care!
Hollye
Really great to discover your blog. I think I'm one of the few people who never really minded waiting for "the news." I always figured bad news would find me soon enough and I was right! Like you, I remember every single detail of "that day." I didn't tell many people at first either. Just be there – that's always good advice isn't it?
Thanks so much, Nancy! I really appreciate your perspective…and your sharing it. Please stay in touch.
This moment of waiting for the diagnosis was one of the hardest in my life. A very painful time. Thanks again for your blog. I looove it. Valérie
Thank you for your comment and sharing your perspective, Valérie. Thank you also for reading the blog!
I’m waiting for a different FBC diagnosis – f-bomb blood cancer. As someone who has generalized anxiety to begin with I’ve found the waiting pure agony. I get so stressed I get physically ill and no amount of telling myself, “stressing won’t help” or that old “what will be will be” will help. I just can’t stop the cogs in my mind from going a million miles an hour and at the same time I’m clinging to that, “but maybe it’s not” possibility. It’s like a rollercoaster that feels like it will never end!
But I’m glad I found your blog because while this didn’t take all my anxiety away it has made me feel less alone… so thank you!