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 

My Family Is Stronger Today Because Of Our Journey With Cancer

My Family Is Stronger Today Because Of Our Journey With Cancer

Guest Blogger, Nat Miller

Sunday, June 3 is National Cancer Survivors Day, a day of celebration for cancer survivors and a day of hope for those currently fighting cancer, like my daughter Hazel. In honor of National Cancer Survivors Day, I’m inspired to share my family’s story with you. I hope that my words provide some solace to families hurting, hope to those who are afraid and light to those who are trapped in the midst of darkness.

I have started this narrative numerous times, each an attempt to say what I felt needed to be said about my family’s journey with cancer. All of those attempts before now focused on the “cancer part,” the hospital visits, the medications, the ups and downs of testing, side effects, traveling, and mainly despair.

Wrongly, I felt that to give my perspective as a father, I had to walk my readers through the everyday heartache that is dealing with cancer. But then I realized that by doing so, I would be giving cancer too much power, too much credit for what it is. Instead of telling a story about cancer, today I want to tell a story about people, love, and support.

Hazel Miller 2

Hazel is the youngest of my four children and was 2 years old when diagnosed with Acute Lymphoblastic Leukemia. She is now 3 years old and has entered the “Maintenance Phase” of her treatment which will last until she turns 5 years old in 2020. The past year has been tough, the toughest of my life in fact. Since that fateful day in April 2017 when Hazel was diagnosed, I have shed many tears; mourning the pain and heartache that Hazel has been forced to endure in such a short time on this earth. In the days following diagnosis, I lamented that it should be me and not her. I was so angry that my youngest, most vulnerable child was being attacked by an invisible villain that I had no control over, that I could not kill.

I would love to say that I dealt with the events of this past year with some sort of grace, a type of dignity, but alas, I do not feel that was the case. It was hard, so excruciatingly hard, that we simply got through it however we could. My family of six was often split up, some of us attending chemo visits in the hospital two hours away, some of us trying to maintain a normal life in our hometown of Marietta, Ohio. Events were missed, vacations foregone, and birthdays moved. This experience changed our life in almost every way possible, but it never broke us, never destroyed our bond.

My family is stronger today because of our journey with cancer, and here is why: people. The people that we have met during this process have been unforeseen blessings, providing comfort, support, love, and respect at every turn. We have met people from all walks of life that helped provide the stilts to prop my family up as we struggled to manage our situation. We have never been made to feel needy when we asked for help, nor weak when we stumbled.

Some of those most cherished people have been representatives from The National Children’s Cancer Society (NCCS). During the early days of Hazel’s treatment, as time off work stretched longer and hospital stays were more prevalent, the NCCS stepped in to provide financial support to meet a specific, direct need for my family. As we progressed through treatment, the NCCS followed up with us, providing informational resources as we transitioned into new treatment phases. Finally, as we continue to walk this uncertain path into the future, the NCCS has been quick to provide emotional and ongoing support for all of our family members.

Hazel Miller 1.jpg

The story that I want to be told today is not about cancer or even about my family specifically, but is about the people that fight cancer, and the people that help others fight cancer. They are as courageous as the patients themselves, waking up each day with a goal to help families in certain peril. These individuals understand all of the toughest aspects of dealing with cancer and use their resources to help keep families like mine afloat in the tumultuous sea of life. The impact the NCCS has had on my family has been profound and will shape our life from now until we leave this earth. For them, we are eternally grateful and forever in debt.

– Nat Miller, father of Hazel Miller

Click here to learn more about the support from The National Children’s Cancer Society

 

Being Part of a Team: Spotlight on Friends of Jaclyn Foundation

Friends of Jaclyn Foundation .jpg

Friends of Jaclyn aims to improve the quality of life for children with pediatric brain tumors and other childhood cancers.  Friends of Jaclyn (FOJ) does this by pairing children with local sports teams, clubs and community groups.  The team provides a unique support system to the entire family as they “battle the beast.”  In turn, the child offers a perspective changing opportunity for the entire team and school community.

FOJ is a nationwide organization that has paired over 730 children with teams in the US and Canada with 34 different men’s and women’s sports at all skill levels.  Recently, FOJ has started pairing children with arts and community groups as well.

Get inspired by Jaclyn and her Northwestern women’s lacrosse teammates:

To find more information on Friends of Jaclyn, please visit their website: www.friendsofjaclyn.org or email erin@friendsofjaclyn.org.

Be sure to follow them on Facebook, Twitter and Instagram too.

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