What It Means to Be a ‘’Lifer’’: The Perspective of a Stage IV Cancer Patient
When you hear the word "lifer", who do you think of? Perhaps it is an inmate, a criminal. Someone who is never getting out of prison, never returning to a life of freedom.
The term is often used for other people, too. They aren’t inmates, and they aren’t in prison. But some might argue they, too, are stuck in a prison of sorts and never return to a life of freedom. They are mothers, fathers, teachers, and lawyers. Your wife or husband. The supermarket cashier, the restaurant server, and the school nurse. Everyday people, you see all of the time. You see, typically people with stage IV cancer are also "lifers".
Lifers have endless cycle of scans and treatments
Lifers are never truly free from the endless cycle of scans and treatments, biopsies, and lab work. For most people with early-stage breast cancer, treatment eventually ends and they return to their lives. Hair grows back. Wounds heal. Scans and oncology visits gradually decrease. The distinct scent of rubbing alcohol and the taste of hard candy become distant memories.
Find a new normal, while always cognizant of the fact cancer may return. Every cough, every headache. Always wondering. Fearful.
According to advancedbreastcancer.net, 75 percent of people living with metastatic breast cancer progressed from an early stage of the disease. What does life look like for them? How does one accept that their treatment will never end-that they are a lifer? Metastatic breast cancer patients are often asked, "When do you stop treatment?". The simple answer is; never.
Different treatment options for lifers
The treatment will most likely change over time. It could be chemotherapy, immunotherapy, targeted, or hormonal. It could be standard of care or clinical trials. Treatment for metastatic breast cancer varies significantly based upon a variety of factors including the location of metastasis and subtype, but the one constant is that patients are usually on some type of treatment for life.
Many lifers take chemotherapy that comes in a pill. They take it at home and have little to no side effects. Other lifers go to the hospital weekly for IV chemotherapy and keep their hair. Some are on different chemotherapy and lose it, or "cold cap" to keep their hair.
In many cases, the more invasive the treatment, the more of an impact it has on your life. This can affect your ability to work, travel, and maintain your home and relationships. It can affect everything.
Lifers see the world differently
Living with stage IV breast cancer means that your world looks different. Different from before your diagnosis, different from those around you, different from how you planned. Just...different.
You become much more aware of time.
Instead of thinking of how much something costs monetarily, I think of how much something costs with my time. That is more valuable to me than anything now. It is precious and sacred.
Making and maintaining relationships can also be difficult.
Keeping your friendships and romantic life healthy and strong can seem impossible. Why? Because it is very easy to feel misunderstood, disconnected. Like even those closest to you do not understand you. Your plight, your challenges.
Sometimes your world can seem very small and restricted.
Longing to escape the prison of hospitals and scan machines, the shackles of flimsy ID bracelets and protruding IV tubes, there is no place else you would rather be than back in your old life. When you were...free. Not tethered to the life of a forever cancer patient. A "lifer".
There is, however, an upside to this sort of life. A few, actually.
One gains a unique perspective about themselves.
You learn what you like, and what you don’t. What endeavors are worthy of your time, and which are not. I no longer hold space for anything that does not serve me.
It is easier to let go.
I have let go of anger, bitterness, resentment, guilt. My life is kept simple. I keep what is important to me, and let the rest go. It is enormously freeing.
The true meaning of gratitude.
Yes, we are grateful. Immensely grateful! I am grateful every time I have a new treatment option, every time I get a good test result, every day I am alive! When I get to wake up on another Christmas morning, blow out the candles on another birthday cake, and pack up my kids for another family vacation, I permeate gratitude. I know despite being a forever cancer patient, a "lifer", that I am still one of the lucky ones.
Living with stage IV cancer may seem like a death sentence, but it can actually be a life sentence. Upon further reflection, the hospital is not my prison, rather, it is my haven! It is my safety, my protector, which keeps me alive. While I may be a "lifer", I think that can-in a way-be a good thing. I know what I want, and learned to rid myself of what I don’t. My time and energy are no longer squandered. I cherish everything and understand the true meaning of gratitude. Some people will never get to live their lives in such a meaningful way that I live mine. It may not be the kind of life I wanted, but it’s mine nevertheless.
If I am going to be a "lifer", I may as well be a happy one.
Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.
Do you find it easy to advocate for yourself?