What It’s Like When Someone You Love Has Terminal Cancer

Guest Blogger, Kimberly Kow, originally published on Scary Mommy

What is it like when someone you love has terminal cancer?

It is one big mindfuck.

The slow agonizing pain of anticipatory grief can chip away at one’s soul and wear you down like waves churning rocks into sand. Anticipatory grief is the thief that steals joy from the present. It is hard to shake this thief. Seemingly happy moments shift reluctantly and without warning into a bittersweet mess of emotions.

You want to spend every day living for each moment. But instead, you spend most days gripped in fear, panic, helplessness, and all the emotions in between. Remaining grateful for what you do have helps. But it doesn’t take away from the fact that you are straddling the unknown and about to barrel toward a place you do not want to be. The longing for more of these moments, for time, is fierce and unrelenting.

I’m a child life specialist. My job is to help other families through trauma and loss. I have sat across from hundreds of parents and siblings and helped to deliver bad news. Offering encouragement and helping families find peace is what I’m trained to do. But it does not make my reality any easier.

In some ways, it makes it harder because I know what to expect. I know that the depth of my pain hasn’t been reached yet. The thing is, it’s really hard to live when you are dying. This is as true for the caretaker as it is for the patient. Because truly living in the moment requires you to acknowledge that there may not be another moment and that you can’t get this time back.

But that is a lot of pressure to squeeze beauty out of every moment when all your loved one wants is for things to stay normal and to pretend that this fucked up thing that is cancer doesn’t exist. But it does. And there’s no hiding it when you want to make plans but you can’t predict how your loved one will feel that day.

On a good day, you want to shoot for the moon and live it up. On a bad day, the littlest things become seemingly impossible. And then comes the mental scolding of why did we get so ahead of ourselves. We “should have known everything can change on a dime.” We kick ourselves for planning too far in advance.

But how can we not when we need things to look forward to? We need that goalpost to be set as high as possible because those are the moments that keep us going. Those are the memories we crave and long for. We risk utter disappointment for the chance of a brief reprieve from reality.

Imagine all the things we want to do in life suddenly having to be pushed up on to an accelerated timeline. Now or never.

Some people romanticize the idea of living for the moment, but there is nothing romantic about it when you are 37 years old with metastatic breast cancer and have no other choice. I want to give my sister the world. I want to cram a lifetime of memories into months. But the constraints of every day responsibilities and realities make this an uphill battle. It doesn’t mean I’ll stop trying. But it does mean there are limits. And that is just one of the many major frustrations of living on borrowed time.

Another is the guilt. It feels selfish taking these trips together and hoarding all these memories when other family members deserve this time too. But I can’t plan for everyone else. The pressure to pretend to feel good when she doesn’t is exhausting. I try to make it clear to my sister that with me she doesn’t have to pretend. She still does so out of her own stubbornness and attempt to protect me. But to a lesser extent.

There are no words that need to be said when she is not feeling well. I always know, and I’m strong enough to hold that information. I don’t need things sugarcoated because I know too much already about what this beast is doing to her body. Sugarcoating things makes me angry. It’s okay for her to say she feels like shit. It should be acknowledged. She should be allowed to live truthfully and to say what we are all thinking. This just fucking sucks.

People often refer to metastatic cancer as mets. But mets sounds cute and sweet. Metastatic is anything but that. It’s a fucking cowardly beast that would be invisible if not for the giant tumor. I want to wrestle it out of my sister. Strangle it to the ground. But I can’t. I keep going back to the same thought of why can’t she just take half of my liver? Like a lizard tail, the liver is supposed to regenerate. I know it’s not that easy, but I wish it were as simple as me just giving part of my body to make hers better.

I have googled article after article trying desperately to find some obscure cure her doctor may not have heard of. Hours looking into that one Facebook video of the study with cancer cells that shrunk in hours! I have bought all the teas and expensive mushrooms I can find on the Internet. You know you’re desperate when you have a $50 bag of dried mushrooms in your Amazon cart.

For now, I know my sister will rally like she always does and face the next day with a bravery that is unworldly and usually only seen in movies. Random acts of kindness from friends and strangers will continue to surprise us and keep us afloat as she fights to navigate the unimaginable. And the almost daily certainty of the absurd will make us laugh. People who say the absolutely wrong thing. A comedy of errors with insurance, scans, a flurry of disability paperwork, medical records, and a wide spectrum of well-meaning people to complete assholes.

It would almost be funny if it weren’t so sad.

Related Articles:

You’re Not Alone; Sisters Fighting Breast Cancer Together 

Helping Kids Cope with Trauma, Loss and Separation: Spotlight and Giveaway on Sun Kisses, Moon Hugs

I’m ecstatic to share a new resource that will help kids cope with grief, loss, separation and trauma. These two beautifully written and illustrated books are a must for any hospital playroom, school, home, or setting that works with children.

bookcover2

Guest Blogger, Susan Bernardo

My picture book Sun Kisses, Moon Hugs was born in 2012, when I was going through a painful divorce and trying to comfort my kids (and myself!). At the same time, an artist friend of mine, Courtenay Fletcher, had just lost a dear friend to breast cancer, leaving behind a five-year-old daughter. The two of us wanted to create a book to reassure kids that love is forever and we are always connected to the people we love. Courtenay’s illustrations are colorful, soothing and inclusive – and there are hidden hearts, Xs and Os so kids can look for love on the pages! We are so honored to see the book being used in a variety of settings to help kids deal with loss, grief and separation – from hospitals to shelters to foster care and more.

rwss

In a magical turn of events, Sun Kisses, Moon Hugs found its way to Le Var Burton, the actor and host of Reading Rainbow, who invited us to collaborate with him on The Rhino Who Swallowed a Storm, a picture book to help families cope with traumatic events. The storm provides a metaphor for the turbulent emotions that swirl through us when something bad happens. The main character, Rhino, goes on a journey to release the storm within him – and finds many helpers along the way. The book deals with difficult topics in an engaging, accessible way – and there are even discussion questions at the end so that caregivers can facilitate a healing dialogue with children after reading the book. The Rhino book has had an amazing journey since its release in 2014, appearing on Good Morning America, and being read aloud by VP Joe Biden and First Lady Michelle Obama to military kids. It was even sent on a rocket to the International Space Station to be read by an astronaut for Storytime from Space!

We have also created a website to share healing art and nature activities to accompany the books, which you can find at http://www.sunkissesmoonhugs.com

warwicks_headshot

Illustrator Courtenay Fletcher (left) and author Susan Schaefer Bernardo first met in a Mommy and Me class 12 years ago when their kids were babies. Life led them down a new career path together: creating books to help families heal. Their third book, The Big Adventures of Tiny House, will be released in Spring 2017.

sun-kiss-moon-hugs-giveaway

Choose one or more ways to enter to win your copy of Sun Kisses, Moon Hugs or The Rhino Who Swallowed a Storm

  1. Sign up for email notifications at ChildLifeMommy.com and leave a comment on this post.
  2. Facebook: Follow Child Life Mommy, leave a comment and tag a friend on the post.
  3. Facebook: Follow Sun Kisses, Moon Hugs and leave a comment on their page.
  4. Twitter: Follow, Like and RT the post to @ChildLifeMommy and @SusanBernardo
  5. Instagram: Follow @ChildLifeMommy, Like and Tag a friend in the post.

Winner will be chosen 2/2/17

Related Articles:

“I wish that Mommy never dies.” Helping my preschooler cope with grief and loss

How we helped our kids cope with a pet loss

8 tips to help kids with separation anxiety

“I Wish That Mommy Never Dies” Helping My Preschooler Cope with Grief and Loss

"I Wish That Mommy Never Dies" Helping My Preschooler Cope with Grief and Loss.jpg

While visiting family during Christmas break, we decided to grab a bite to eat. I saw a fountain that would be a great distraction for my impatient 4 and a half-year old, while we waited to be seated. As I handed my son pennies to toss into the water, I had no idea that he would have such a powerful wish.

“I wish that Mommy never dies.”

His words took my breath away, as I just stood there with a handful of copper pennies that were meant for garbage trucks, police cars and Legos.

Our family had experienced 4 deaths in just a short ten months and my son was realizing the permanence of these deaths.

As a child life specialist that works to support children’s grief, I was witnessing my own son’s emotional torture of understanding death, coping with his fear of loss and trying to understand why his French Bulldog couldn’t come back from heaven.

When we returned home from vacation, his grief began to manifest and triggered some separation anxiety. His transition back to school was challenging, bedtime was a struggle and I noticed that he was constantly following me around the house.

One night before bed he asked me if I was going to die. Part of me wanted to say, “No, never. Don’t think like that.” However, I took the alternative route of responding with empathy.

“You are so worried that something will happen to me. You love me so much and don’t want me to leave.”

He knew that I understood his fears and I was giving him permission to express them.

Our conversation continued with lots of reassurance on how I take good care of my body and will hopefully live to be 100. We ended our talk with lots of giggles, cuddles and reminders that no matter where we are in the world, we are always connected.

After I put him to bed I had a plan in my head to help him work through his grief and cope with the separation issues. So this is what I did:

Lots of validation-  As soon as he began to get slightly upset about going to school, I named and validated his feelings. “You really don’t want to leave Mommy. You miss me so much when you are at school. I miss you too.”

Normalize his emotions- I try to then follow up the validation with normalizing his thoughts and feelings. “It is so hard to go back to school after such a long break. Lots of kids feel the same way.”

One on one time- I make sure to spend some extra time with him each day. We sit and eat lunch together, I hold his hand and carry him around while I smother him with kisses.

Play- I get on the floor and play with him using a child-centered approach. I let him lead the play, choose the activity and give him as much control as possible. I narrate what he is doing, name feelings and just stay present in the moment. It is a nice way for us to both feel reconnected.

Communication- I don’t want his teachers to become frustrated with him as he struggles to separate from me at school. I am very honest about the deaths and let them know that  we are helping him work through it.

Activities– I provide him with a variety of activities that promote self-expression, coping strategies and memory making around the losses.

The other day he was getting worked up about going to school, so I introduced him to an  activity about staying connected.

First I read him the beautifully written and illustrated children’s book, The Invisible String, by Patrice Karst. It instantly resonated with him. Then using construction paper, markers and lanyard, I helped him create his own invisible string.

invisible-string

He had lots of choices during the activity of what color paper, markers, freedom to draw whatever he liked, and the length of the string (which ended up being 8 feet). He then practiced  pulling on the string, as I acted out the tug from my heart. His face lit up with a  smile and I knew that he was beginning to feel a bit more safe.

Grief is hard to deal with, but if you allow kids to feel and express the unpleasant emotions through empathy, play and patience, they will develop healthy coping strategies and resilience.

Related Posts:

Helping Kids Understand Death

How We Helped Our Kids Cope with a Pet Loss

DIY Fingerprint Mold