Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Connect
@shellyk89 Adorable and beautiful! Your avatar suits you, and I admire your little guy's spunky attitude 🙂
I'm going to provide you with a link to a community center I've gotten to know through past volunteer work in case there may be one near to where you live: https://www.cancersupportcommunity.org/find-location-near-you
In fact, maybe you can check to see if any offer Zoom programs you might be interested in attending?
-
Like -
Helpful -
Hug
4 Reactions@shellyk89 you are beautiful … and so is your little one! What a lovely picture!
@shellyk89 you have a great gift for writing - you express your thoughts so well! Keep up the good work!
-
Like -
Helpful -
Hug
1 Reaction@shellyk89
If I knew you lived close to me, I'd be there helping! I just turned 70; my kids said its not 70; its seven 10's.😊
In the past 2 years, I've had part of a kidney removed, a tumor on my carotid artery removed, and now they are watching my thyroid (along with my kidneys for the rest of my life). Its all so screamingly frustrating, I hear you. Most people don't have a clue Im 70, but these past 2 yrs hurdles have made it hard to see it as just a number.
I read your posts, and feel them in my ❤️. I just want to hug you and hug you, and make it go away. You're younger than my 2 kids. Keep kicking and fighting and letting it out. Cry when you want to. Sending hugs, praying for you, and sending bunches of love. /s/ Wendy
-
Like -
Helpful -
Hug
7 ReactionsI’m looking for this group every day in my emails. My heart is touched by every story I read.. I so appreciate that people affected by cancer either a patient or a caregiver gives us all a clue how to live with this diagnosis.
Every day lately I either hear from my sibling more details of his grade 4 cancer or I follow up with my own research. So far, the genetics and DNA results are the very worst possible. Radiation and chemo won’t help very much.
I can hear the sadness in his voice and behavior. However, my family invariably handles bad news with a stiff upper lip. I have here and there let him know and our sister that I am sad and at the same time very proud of him. For expressing how I feel-I’m criticized! At the same time my sister is always unreasonably optimistic-bunnies and rainbows and unicorns. Both my brother and myself find this irksome and not helpful as the writing is on the wall and it’s not good. Being realistic apparently is the help he wants.
-
Like -
Helpful -
Hug
4 ReactionsI have a little understanding of what you mean. I was 32 when diagnosed with my first cancer, thyroid, then at 34 told it was terminal. That's been over 30 years ago now. Ive had multiple recurrence, and 2 new cancers , 2 partial nephrectomy ( tumor removal / kidney rebuilding). I had been recently remarried and had 5 elementary age children between us.
Living your life while "dieing" is what occurred to me one time. But I began to determine to just really live my life. Not to focus on the cancer more then the living. My faith was a huge support. I stopped saying how I really felt when people asked, because they didn't really want to know, so now I just say "I am blessed" because I am. Maybe not the way some would see , but I am blessed.
Ive watched my children grow, marry and have children. I wanted to leave a legacy for my grandchildren. I worked with homeless and saw that youth on the streets usually never heard positive things, No one saying they were worthy or that they could achieve things. So I wanted to share with my grandkids a way to speak positive words forward to them. So I wrote a book about " MY wishes are Prayers for You" and left places to hand write positives, stories , affirmations and add pictures. When I gave it to my 13 year old granddaughter ... she cried . It meant something to her!
You have a gift for words, so perhaps consider maybe self publish a book. Speaking your heart .
Ive written several. Its healing and its possible! God has gifted ne with service and work that is impact full.
How you are feeling right now is a normal reaction to an impossible situation, but you are doing such a great job of focusing on what is important. Being really present with those kids is important . Great work in the midst of such challenges!
I am praying for you . May you reflect back on 30 years as well!
-
Like -
Helpful -
Hug
11 Reactions@judyandchloe
I hope that you can find some one-on-one time with your brother so that the two of you can speak freely with each other without interruption from the bunnies & rainbows.
When my mother-in-law was dying I tried to do this but was quickly shushed by family members. I wasn’t blood so I stepped out, but can’t help feeling that she would have wanted to have a say. On the other hand, when my dad had a major incident my brother the optimist was right about the outcome while realistic
me later admitted that there was some room for positivity.
Still, I think we need to honor the patient’s feelings and allow him to speak. He is sad and scared and if he’s wiling to share with you that is a great gift that you can offer. (But there’s also the chance that he may not want t make you sad.) Sending hugs.
-
Like -
Helpful -
Hug
3 Reactions@lbrockme
You write words I have not found a way to succinctly say. I live as you do. In the day, focusing less and less on my “terminal” pancreatic cancer and much more on the people and world around me. It is so much more fulfilling than thinking about me.
I take my medicine and go!
Yes, I have moments of fear. Not of death, but of whether I have used the golden time I have been given in the ways God would wish of me. I want to leave good happy memories and some words. Perhaps I will do as you have done! Thank you for writing this and reminding all that no matter our infirmities, we have gifts unique to us and can always help someone. Cards and words from others have meant so much to me. When we are tired, that is something we can do for others 💜
-
Like -
Helpful -
Hug
9 Reactions@gangcarotid1 thank you so much
-
Like -
Helpful -
Hug
1 Reaction@ffr such kindness and heartfelt support-this platform helped me to say something important about being realistic about a terminal diagnosis. I need to remember every day is a real gift-we need to hear and say this again and again. If society were built on this reality instead of power and buying. “Stuff” it would be a huge sigh of relief in heaven.
-
Like -
Helpful -
Hug
2 Reactions