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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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@judyandchloe
I think it often takes a life threatening diagnosis to recognize the true value of life. Me? I prioritized my loved ones over all else after my diagnosis. Time with family and friends is what counts. Most important, I want my grandchildren to remember me.
But I also recognize that others have bucket lists or travel agendas as a priority, so no judgment.
Here’s to strength and fortitude!
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8 ReactionsYour posts resonate not only with those walking the same path, but the rest of us who've faced cancer and/or lost loved ones to it. I wonder what I could have done to comfort my brother when he was faced with the same fate as yours two years after my bout. He said he hated hugs, but I would have hugged him every day to let him know he was not alone. I had more time with my sister, but distance limited our time together. It is wonderful that you are being brave for loved ones but think of what you would want if this was their journey. Let them be there for you and help carry this burden you didn't ask for. I hope you find peace.
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8 ReactionsI’m just going to add, your words are heard. We understand the urgency in your words. I wish I could heals everyone. Thank you for sharing. Joyce
Dear Shelly
Your post touched me in so many ways and I want you to know that I hear you, I care about you and I will pray with all my might for you.
I am on my 4th cancer and I know exactly what it feels like to sit in between life and death looking out at what it is at the moment and what it could be in the future.
There is actually another inbetween in the middle of the other inbetween ( if that makes sense) and that is faith and hope.
I was much older than you when I started my cancer journey and now 11 years later I ask myself how did I keep myself from bitterness and resentment when this cancer thing is noone's fault. How could I keep on smiling and continue doing all the things I normally did on a day to day basis. My faith in God was so powerful and I knew that had to be the only answer to the calmness and inner peace I felt ....at least for the first 3 cancers.
Then when I thought I was in the clear I was diagnosed 5 years ago with stage 4 metastasized melanoma cancer in my lung, inoperable.
My strong faith is still there but this time fear has entered the equation. I am truly back in between the life and death zone of this awful disease.
I have lost 2 sons, one as a 3 year old and his brother as an adult and many times I questioned God. I have asked him over and over again how much more can one woman take. While I must handle these trials alone He keeps blessing me yet I dont know why he does. Am I here for a reason? Life Is getting short so I would like to know before it's too late.
I have grandkids and great-grandkids that I love more than life, one child depends on me more than the others so maybe she is the reason why I am still alive.
This last cancer has given me very little quality of life. I am in remission but I have to stay on treatment forever and the side effects are causing me such stress and concern....but hey I am breathing and still here on earth until God decides I cant take anymore. I am not ready to give up yet and dont you give up either.!!!
I know days will be tough and the kids will rattle that one nerve but take a few minutes to yourself and start fresh...every day start fresh...a new day.
You write so eloquently so start a daily journal- put all your feelings in writing. Write what the kids or hubby did that upset you and how you handled it. When you read it later it will make you feel different.
If you do not have a church home, find one....start working on those support and prayer warriors but most of all dont give in to the big "C". Now I want to tell you that you are NOT doomed. My young daughter in law had triple negative breast cancer and is 100% cancer free. There are so many treatments out there and so many survivors.
Do everything your doctor asks, never miss an appointment. You will beat this, I know you will.
I would love to follow your progress so contact me
One last comment. You mentioned you didnt know how to answer people when they ask how you are doing. It is the most awful feeling because like you said you dont want to make anyone feel uncomfortable.
I responded one time during a bad moment and I felt so awful about how I answered.
A friend approached me asking "my goodness Pat, what is your secret for losing so much weight"?
I could have been tactful but my day was awful. My insensitive reply was..." oh.... I got cancer"!
I regretted that and did apologize.
With this latest cancer I am not as social anymore. My side effects cause me to stay home and only get out for doctors appointments or going to the park with my granddaughter.
Sorry this is so long. God Bless you.
How long have you been on treatment?
What did your doctor say your prognosis was?
What treatment are you on?
Tell me about your family..
Always
Pat Rasbeary
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12 Reactions@songinmyheart54 so sorry for what you have gone through ! what a great post about treasuring whatever life is left in us ! Thank you very much. Sending all possible healing and comforting thoughts your way .
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3 ReactionsMy name is Sharon, I’m truly sorry for everything you’ve going through. You’re not alone here. Good people to bounce things off of
I joined this group because 1. Mayo, I’ve been reading on COPD site. Stage 1V. He has stage 4 lung cancer. Radiation and chemotherapy 7 weeks straight. No results. Did 3 more rounds of stronger chemo. No changes.
He’s participating in a trial that attracts solid tumors. It’s no cure hopefully to add good quality of more time.
He’s almost 2 week past first treatment. He sleeps constantly. His legs are so weak he’s fallen twice. No fluids much or output in 24 hours. Feel like I’m watching him die in front of me. I’m scared but he’s more afraid. I will be lost without him
Try what they offer. Everyone reacts to meds differently. I wish you the very best
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10 Reactions@songinmyheart54 This is truly THE post on Mayo Connect that has touched me the deepest. I’m full of emotion and love and gratitude towards you. I have stage 4 appendix cancer, in remission but my time will be limited unless new treatments are found. I live in a similar zone.
I hope you keep on going, especially for that young child who depends so heavily on you.
You’re AWESOME. Thank you ❤️🩹🙏
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11 ReactionsDear Shelly
I am going through EVERY word you said. I have stage 4 b aggressive serous uterine cancer with similar mutations. Every feeling you commented on and being remembered etc i have. I am in the middle of treatment and Am so appreciative and thankful you posted this. Thank you
Kathy heidt
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9 Reactions@isadora2021
Thank you. My prayers are with you too. God loves you and so do I.
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1 ReactionHi Sharon @sbw000, I'm sorry to hear about the challenges that you are both facing. It sounds like he has a variant of lung cancer that is more resistant to treatment than some others. I hope you start seeing some improvement soon from the clinical trial. I know that you are focused on him at this point, but don't forget that taking time to take care of yourself will help you take care of him too. Does he have access to palliative care to help with some of the treatment side effects, including the instability and lack of eating and drinking?
The emotional side of this isn't easy to process. Being scared is to be expected, cancer is scary, changing treatments is scary, an unknown future is scary too. Try to keep communicating; with him, here on Connect, or through an in-person support group. Know that there are others facing similar situations.
Did you find the caregivers group?
https://connect.mayoclinic.org/group/caregivers/
And join me and others with lung cancer in the Lung Cancer group:
https://connect.mayoclinic.org/group/lung-cancer/
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