You’re Done... But You’re Not Really Done With Cancer

Ah yes, I’m still here. Even though I’m mostly done with active treatment for Stage III Breast Cancer (other than the estrogen-blocking pills that make me feel like I’m 90 years old and someone at work just asked me why I am limping…), I have more to discuss because breast cancer isn’t over. There are so many articles and posts about what not to say to breast cancer patients and/or survivors. I agree with most, not all. Usually, the list of things that are a no-no are super obvious, like “you get a free boob job.” Seriously, people actually think that. It’s important to let the world know what types of comments are helpful or hurtful, but I want to take this idea one step further and let outsiders (not-diagnosed-with-breast-cancer-people) know what we are feeling and will continue to feel for quite some time. I see new survivors like myself feeling lost and alone instead of victorious. Maybe sharing the post-treatment struggle can enlighten the masses.

What I want to talk about is what happens after, once active treatment ends and you ring the bell, or hold up the sign. I see it over and over again in my social media cancer groups. People outside our world say “great, you’re all done! Now you don’t need to ever think or talk about cancer again and let’s go hiking because you’re up for that now, right?” But for us, when all is said and done, i.e. surgeries, chemo, radiation, etc., it’s really not all said and done. What we are left with are shells of our former selves. Our hair is starting to grow back. It’s not cool, edgy, rock the bald anymore; it’s like male pattern baldness. I used to say mine looked like Bobby Hill from King of the Hill. Our eyebrows and eyelashes may or may not be growing back. Some of us gained weight during treatment due to the steroids we are given, although there is a huge misconception out there that chemotherapy makes you lose weight.  Chemo brain, although not as acute, lingers just enough to feel like short term memory loss. We will be suffering from the side effects of treatment for a year, or many years, or forever. If you are diagnosed with Stage IV or Metastatic Breast Cancer (MBC), treatment never ends, until your life ends, however long that may be. For some, that may be 2 years, for some it’s decades. We have scars like a roadmap.

Beyond the physical pain is the mental and emotional anguish. We have PTSD. Yes, that’s a thing with surviving breast cancer. We have a crippling fear of recurrence because according to Metavivor, as many as 30% of early-stage breast cancer patients will become metastatic.  Our world has been doctors, nurses, radiation technicians, phlebotomists, medical procedures and hospitals for a long-ass time. As much as we hate having cancer and going through treatment, when we are among our doctors and nurses it’s like we are in a safe zone. We feel more confident nothing bad will happen to us once we walk through those doors. We are checking in to fight. Our doctors, nurses, and techs have become our friends and our family. Then one day, we’re all done. Out through the doors we go, into the big scary world we used to navigate mostly without effort but now we do so without the security blanket of our medical team, and without any real knowledge of what’s to come, or what we can expect. We’ve had our safety net ripped away. We are different people. We are not the same confident women we were before breast cancer. We will likely regain this confidence, but not yet. We have probably lost friends and relationships along the way because cancer was too scary, or they were generally selfish people and couldn’t handle that our cancer wasn’t all about them. I see the term “this is our new normal” bandied about all the time. Truer words could not be said.

We have changed in so many ways. In my case, I truly believe I came out the other side a stronger person but it took quite some time to feel that way. Most of us are petrified because breast cancer can and does return in many cases. It’s not like some other illnesses where you get treatment and then you’re cured. We may have no evidence of disease at the moment but that could change at any time. It’s true that nobody knows what the future holds. Anyone can die just crossing the street or choking on a sandwich but we breast cancer survivors have a target on our backs and we have to learn to go about our lives and cope with that. We don’t want special treatment, just understanding and awareness that as much as we would like to, we can’t just bounce back into our lives. It will take time. Please be patient. To us, a simple step forward can feel like jumping off a cliff.

Photo courtesy of author.