“She then said to me that I should get over it!”
“You had breast cancer... but not anymore!”
Her eyes welled up with tears as she recounted her conversation with her mother. She has been repeatedly accused by her mom that she isn’t being positive and by “holding on” to her cancer she is not moving forward in her life.
“They just don’t understand!” she sighed.
“But you get it. It’s never over, is it?”
She looked at me straight. I replied.
“I understand. It is indeed never over.” We both smiled at each other, as we sensed the comfort of understanding the pain in a way unique to us.
My friend, also a breast cancer survivor, has been dealing with her family who expect her to “get over” her cancer. If you are a survivor and reading this, I bet you have been part of a similar conversation with a friend, a partner, a neighbor or a family member at some point in your recovery. I had been part of similar conversation, too. I had even been given signals that by continuing to blog about cancer, I was unnecessarily staying too close to cancer and that I should move on.
Those who have never had cancer think we can get “over it” by waking up one fine morning and deciding it is now over just because chemotherapy and radiations and surgeries have concluded. Let me tell you a secret: In our minds, it’s never ever completely over.
“Just because I look well and have hair doesn’t mean I am all better!” she continued. “I have gained weight, I feel tired, I feel numb. Often, getting through a day is hard. Does this sound like its over?”
I nodded as I understood exactly what she meant. I was there once, too, when I was in my post treatment phase. My cancer, however, metastasized and came back after two years. This woman is still struggling, despite being “cancer-free” per her doctor, just like I did and continue to do today.
If you have ever wondered why cancer survivors bond with each other or connect instantaneously, it is because we “get” each other. We are able to relate to each other in ways others can’t. One of the biggest emotional setbacks that breast cancer survivors deal with post treatment is the expectation from their family, friends and caregivers that survivors should “get over it” and join life in its entirety.
In fact, the survivor-ship phase, which starts after all treatments end, is actually a very daunting and nerve wrecking time. Through cancer, we get used to regular appointments and medical oversight. But then when treatments end and the oncologist looks at you and says, “You are done. Go live your life,” most survivors feel lost. After six months to a year of intense treatments, we forget what it is like to “live life.” And just like that, with a statement and a pat on the back, survivors are pushed back into the world that is no longer recognizable to them. Many have mixed feelings about the word “survivor” since they are unsure if they truly have.
“Cancer changes everything” is an understatement. Those with cancer are no longer the same people when it hit them. We took an exit off of the freeway and then got lost for a long time on unfinished roads and unfamiliar streets. It’s hard to merge back into the fast lane. It scares us to see everyone moving so fast and, sure, while we feel we are just limping along.
We are tired and exhausted from grueling treatments and their side effects linger for a while. Many of us are left with permanent scars of treatment including physical limitations, neuropathy and joint pains. Many remain on hormonal therapies or are thrown into sudden menopause. Menopause and hot flashes are just the tip of the iceberg of chaos that occurs in our bodies. Some survivors keep going through repeated surgeries for reconstruction to get their bodies somewhat similar to what they once had.
Dealing with cancer is grief and loss at multiple emotional levels. Even though, after the end of treatment, survivors are told they are cancer-free, we are anything but “free” of cancer and cancer thoughts. We are ridden with feelings of anxiety and uncertainty and stalked permanently by the fear of cancer. Many of us hardly get restful sleep at night. I remember how fractured my sleep was on Tamoxifen and how my joints hurt every single day. Women after breast cancer are on 5 or 10 years of hormonal treatment and live quietly with these side effects. They don’t say much because they feel that their life was spared so they should pretend to be happy and just suck it up.
When I was diagnosed with recurrence, there was a very strange relief from this horrible fear of recurrence. I was surprised but I do remember the feeling as if the other shoe finally dropped. For others, they are living with this dreadful anxiety of “what if it comes back” every day.
Most people look at survivors think, “They look well and are not complaining; they must have recovered.” But the truth is far from it. A survivor continues to deal with consequences of treatments and emotional aftermath of cancer for years on end. Every time there is an appointment, the whole thought process of fear and anxiety is reactivated. Going in for a test or scan or dealing with an unusual symptom always shakes up survivors and the dread of cancer being back is terrifyingly close.
Many survivors end up having clinical depression, anxiety and even post traumatic stress disorder. The battle with cancer continues for a survivor despite cancer being gone from their bodies. The fear of cancer lingers over most survivors and then about thirty percent like me have to deal with recurrence and start of the treatments all over again. For us with metastatic breast cancer, it is never over at all. Our fears just get bigger and scarier.
But all of us, no matter what stage of cancer, are scarred for life. Many times we feel like we are merely a shadow of what we once were. We try very hard to meet life halfway but then there are numerous days we fall short. And being told to “get over it” isn’t very helpful. Those are the days we need love and support. The fear sits on our chests every single day. It changes in magnitude daily but never disappears. I have yet to meet a survivor that has completely forgotten her cancer experience.
Those who are in the first five-year window after the diagnosis are especially vulnerable to complex cancer feelings and physical consequences.
So next time you are talking to a breast cancer survivor, please don’t tell them to
“get over it.” Hold back that advice. Instead, hold their hand and tell them that you know they are trying their best to recover and that you will continue to cheer them on.