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The in-between life and death cancer
The In-Between Do you feel this way to?
I’m 36. I have two kids and stage 4 triple-negative breast cancer. I live in the in-between—not at the beginning where everything is shock and plans and “we’re going to fight this,” and not at the end where there’s some kind of closure. Just… here. In the middle. Knowing, deep down, that I probably won’t make it out.
People ask how I’m doing and I never know what to say. “Fine” is a lie. “Not fine” makes everyone uncomfortable. The truth is: I’m tired in a way sleep doesn’t fix. I’m scared in a way that doesn’t go away when the sun comes up. And I’m grieving a life I haven’t even lost yet—mine.
The nights are the hardest. That’s when the whys come, one after another, like they’re waiting for the house to get quiet. Why me? Why now? Why this kind? Why did my body turn on me? Why do I have to explain cancer to my kids when I can barely explain it to myself? I stare at the ceiling and bargain with a universe that doesn’t bargain back.
Then there are the tears. They don’t ask permission. They show up in the grocery aisle, in the shower, in the car when a song hits a memory. They show up when my son looks at me, eyes big and worried, and asks, “Mom, what’s wrong? Why are you crying? Why are you losing your hair?” How do you answer that in a way a child can carry? I try to be honest without breaking his world. “I’m sick. The medicine makes my hair fall out. I’m sad sometimes, and that’s okay.” He nods, but I see the worry stay in his shoulders.
And the anger. God, the anger. It comes out sideways—snapping at the people I love most, shutting down, being sharp when I mean to be soft. Then I hate myself for it, because at the end of the day, nobody did this to me. There’s no one to blame. Cancer doesn’t care about fairness or plans or how good of a mom you are. So the anger circles back and lands on me, which only makes everything heavier.
My life is a mess. Appointments stack on top of each other. Bills come. The laundry never ends. I forget things I shouldn’t forget. Some days I’m “productive” and feel almost normal; other days I can barely get out of bed and I hate myself for that too. I’m trying to keep routines for my kids so they have something steady to hold onto—dinner, homework, bedtime stories—even when my own insides feel like chaos.
Here’s the part I don’t say out loud often: I am terrified of being forgotten and terrified of being remembered only as “the sick mom.” I want my kids to remember the way I laugh, the way I make their favorite pancakes, the silly voices I use when I read. I want them to know I was a whole person, not just a diagnosis.
If you’re reading this from your own in-between, I see you. I see the way you hold it together for everyone else. I see the questions that loop at 2 a.m. I see the guilt, the grief, the rage, the love that feels so big it could split you open. You are not alone in this, even when it feels like you are the only one awake in the world.
I don’t have a neat ending. I’m still here. Still showing up. Still trying to stay afloat in a life that looks nothing like the one I planned. Some days that’s enough. Some days it has to be.
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You are strong, beautiful and special. You wrote something very beautiful that all of us here can relate to. I am in treatment for my 4th cancer in 12 years: breast, thyroid and 2 times melanoma.
Thank you for saying what I couldn't.
By the way, my daughter in law had triple negative breast cancer and today she is 3 years out and back to hiking and traveling.
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6 ReactionsYou need to see a Psychiatrist and get some medication for Depression.
I felt exactly the same way, when I got a diagnosis of Cancer. I told my oncologist, it is a death sentence that you are giving me. It was extremely difficult to accept that Cancer Word of diagnosis.
I got.very depressed (Still I am) and saw a Psychiatrist an elderly woman out of University of Chicago Hospitals and Medicine, who put me on an antidepressant medication to deal w the.shock of Cancer diagnosis.
Now, w that medication, I am somewhat coping w it and dealing w all horrific treatments.
Please see a dr. Who can help you.
Good Luck.
I will pray for you.
Love and hugs yo you.
VJ
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4 Reactions@songinmyheart54: sure you may ask but let’s continue this discussion on the Melanoma and Skin Cancer forum here: https://connect.mayoclinic.org/discussion/melanoma-bottom-of-foot/
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1 ReactionShelly, You touched my heart. I’m living my in-between with TPLL. Some days are difficult when I think about the ones I am leaving behind. But I trying to be mindful to enjoy the present moment .
Thank you for sharing your thoughts!!
Sheila
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4 Reactions@grammato3
You also have a gift for words. This response was excellent, IMO. I have a dear friend that does volunteer at a Hospice, and has shared her experiences with patients, and how valuable they have been. I have no idea what it is like to be am EOLD, and frankly did not know that such a position even existed.
What has stuck with me, over the last 2+ years as a cancer patient, is how few people actually care about me, or "the patient's" well being. Oh, yes, they ask how am I feeling, any pain? any other symptoms? Well, see you in six months after the next MRI. This is from an Oncologist I trust, and one that I truly believe has my interests at heart. I guess that she has so many patients to see, and not enough time to spend with them.
Sorry, I rambled on, but it is a pet peeve of mine, as a cancer patient.
Thanks for your words. They have shown a greater understanding for those of us with cancer.
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4 Reactions@mapleskoff There is no need to apologize - this is our space to freely share our feelings free from judgment.
Personally, I sometimes get the sense that it's not so much that people don't care as it's that they don't know what to say. They're uncomfortable with talking about cancer, therefore they avoid it, or they focus on the physical symptoms and not the emotional. I've even had some friends who have faced cancer diagnoses themselves who have been successfully treated and simply say, "Think positively". I have to gently remind them they're one of the lucky ones who have beat cancer while others, like myself, are continuing to live with the uncertainty that this particular cancer isn't "cured", and that such toxic positivity can actually work to minimize fear - and possibly induce guilt in those who are not fortunate enough to recover. It would be so much more helpful to ask how the individual is coping with the diagnosis and that they'll be there to provide support -or simply listen - on those days when one is feeling sad, or angry, or afraid. Such feelings are very real and should not be minimized. It's okay to lean into them, and know that we have friends and loved ones - even our treating medical professionals - to turn to when we need them.
@mapleskoff, I can't take your sadness or pain away. But I, and others like me such as the OP who initiated this post, understand where you're coming from. This truly is a connection site to provide all of us the opportunity to express ourselves fully - from celebrating the achievements in our treament, to grieving the loss of how we anticipated living out our years....and all those feelings "in between". Please do continue to share.
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8 ReactionsI totally agree. Most people find the word "cancer" scary. When I was growing up my family, especially my parents, would NEVER say the word. It was as if the word was spoken aloud, someone close would get the disease.
Living with cancer, as you noted so well, has it's own problems, and trying to explain to someone that has never experienced it is problematic in and of itself.
Thanks for your writing. I will continue to add comments when I think they are of value. I just still find it difficult to make comments about my situations.
Thanks, too for listening.
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5 Reactions“The Big C” was whispered in my childhood home. It was always equated with death and instilled fear. When my dad got cancer (I was an adult), he stood up to it with the ability to ask direct questions and to make decisions that his oncologist disagreed with re treatment vs quality of life decisions. I was there and I heard it all. When I was diagnosed, I discovered how much I learned from my father and how much I was like him. I also learned that those who do not walk in my shoes do not get it, so I do not discuss my medical life with them. And I have told them that I won’t - or I have scared them enough that they won’t ask. I despise the toxic positivity and the continued attempts to ask for details. Details that I know become shared with others. I learned the hard way to zip it. This is a safe place, as is my journal and my therapist. The In Between is a difficult place to live. Thank you for listening.
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13 ReactionsDear Shelly. Your message is powerful. The uncertainty of anyone’s future facing similar circumstance as yours leave so many heavy questions in ones mind. Hang in there. You are doing the best you possibly can do. You are making a difference to those you love around you by leading with courage and thought. Your children know your love for them is eternal by your brave face you wear every day. My own father suffered from cancer and the effects of treatment. Do not give up, never, not ever in your fight. It is ok to feel the way you are feeling. To be perfect is unattainable, just be yourself is the goal. Our daughter is in surgery as I read your post. Keep the faith. A breakthrough is imminent for your cancer. I read about CAR T immunotherapy helping stage 4 cancer patients. Keep on your journey and be a believer in the medicine to come. I only wish I could do more for you. Sending love and positive energy to you and your family. Kindest wishes. Craig
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9 ReactionsWhat nice thoughts @craigtannarbor!