Tag Archives: Hear My Voice

Social Media and Metastatic Breast Cancer Grief: Some Thoughts from a Stage IV Patient

This entry is part of the 2016 Hear My Voice #Stage4Lifer campaign. Spread the word, read the blogs on LBBC.org and add your own contributions.

Whenever I come across a new metastatic breast cancer blogger I am simultaneously excited and apprehensive. I am glad when another voice joins our MBC online chorus but always fearful if the last post is a few months old: Is this person doing ok? Is he/she still alive?

I was diagnosed with metastatic breast cancer in 2009–most of the veteran MBC bloggers–the women who preceded and inspired me–have since died. Every once in a while, I will come across their blogs when Googling some breast cancer topic. Occasionally, I will follow a link to their sites—I always come away feeling sad–and nostalgic for better days. It’s  hard to go back and read the hopeful reports on a new treatment–knowing ultimately how things turned out.

ginny22

A video for my friend Ginny

Seven years ago, Facebook was still in its infancy–there were no closed groups. Twitter was only three years old and not in widespread use. If you wanted to connect with other Stage IV MBC patients online, you could go to  discussion board like BCMets.org, BreastCancer.org or Inspire.com. In the case of the latter two, people used screen names. This anonymity was helpful for confessing one’s deepest fears or concerns, but also unsettling. If you followed “LuvMyCatz,” for example, you would come to feel like you really knew her. But if  LuvMyCatz died, there wasn’t the same closure  you would have with an in-person friend–going to a wake or funeral, sending a condolence card and so on. There was also the very real possibility LuvMyCatz would stop posting you and you would never actually know if she had died or even her real name.

Losing non-social media friends is hard, too. For several years, I enjoyed some periods of stability. When your disease is fairly quiet–at least for the moment–what do you say to a friend who is actively dying?  For months and even years, we could commiserate on a similar level…my oncologist does things this away, I’ve got scans coming up, do you have any advice for these side effects, etc.

When people are dying, they have crossed into a new and scary territory. Your life is going on (at least for now) and theirs is not. I have never felt more helpless.

Fear and guilt are also pervasive. There is no denying it–what is happening to that person will eventually happen to me. Perhaps my final days will play out differently, but the ending is invariable and inevitable.  That person I laughed with, who had a lovely family, a rich array of non-cancer activities and interests and who got excellent care from top doctors, is now dying. And so will I.

These are thoughts I generally shove far from my mind. Like Scarlett O’Hara, I’ll think about it tomorrow. That’s the subject of another, yet to be written post…

weremember

By Slyvan Kamens & Rabbi Jack Riemer

 

But what can we do to comfort ourselves and the family and friends when someone dies? That is a highly personal question–everyone must find their own way and do what is most comfortable and best for them.

I think it is important to tell people NOW (patients and non-patients alike) today that we love them. Why not send a text or card now, telling them so?  Or you could just make a phone call. Or let them know in person.

When someone is actively dying, they may want only a few visitors (or maybe only family). They might not be up talking on the phone. Don’t wait until someone is very ill to let them know you care–do it now, while it is easier for all. (See: “We Live on the Internet, We Die Alone.“)

For me, writing is cathartic. Writing about friends–and people who inspired me–helps me deal with my grief. I think it is important to remember people–our memories and positive thoughts are surely of comfort to the deceased person’s family and friends. But not all writing has to be public or even  shared. If you have lost a friend or loved one, consider writing that person a letter. It will help you come to grips with your feelings–and hopefully help you process your grief.

Barbara Karnes, author of the “Gone from My Sight” booklet, shares some coping tips and practical ideas here and here.

I’ve also made videos to remember those we’ve lost, like this one, this one and this one.

This year has been particular difficult for me…my friends  Ginny Knackmuhs, Adrian B. McClenney,  Jill Cohen, Sarita Joy Jordan, Jody Schoger, Holley Kitchen and far too many others have died.

I read about Randi Rosenberg, co-founder of the Young Survival Coalition, (1966-2010) in a CURE magazine article. Influential blogger Lisa Boncek Adams died in March 2015. Tami Boehmer, a blogger I attended several events with, died in November 2015.

It is hard to think of all the friends I have lost over the past seven years. Samantha Pritchett was a discussion board friend–one of the first people I knew after my own diagnosis to die from the disease. Gigi Robin was another BC.org friend. Lori Baur (1970-2011) was someone I knew from her Inspire posts.  Dana Robinson was a fellow patient introducer at the 2011 MBCN National Conference. Joani Gudeman was a good friend and fellow MBCN board member. Susan Davis was a former MBCN board member and a true inspiration. To this day, memories of MBCN’s Ellen Moskowitz  and Suzanne Hebert push me to do more. I often think of Kathy Coursey-Boes–her daughter, Addie, is about the same age I was when my own mom died from inflammatory MBC in 1983.

I also think alot about the bloggers who preceded me:Canadian blogger Daria Maluta (1961-2011) was among the first MBC blogs I read. Then there was Rachel Cheetham MoroRivkA “with a Capital ‘A’” Matitya, Donna “Dances with Pens” Peach, Jenny Williams, Susan Niebur, Bridget Spence, Jeanne SatherLisa Broberg Quintana aka Michigoose and so many others.

I hope they know how much they helped me–and other people.

leah

One final story: This is me with Leah Stein Leslie Besen who died a couple of years ago. Leah and I met online at BC.org and later  in person in Jerusalem when I was there for a business conference. It was wonderful to meet her–she was waiting for my friend and me outside of the designated restaurant as the snow(!) was falling. She told us where to get the sherut and where to go from there and must have known we were not strong on directions…

She was very tiny–not much taller than the rolled up umbrella she was carrying. I had never eaten in a kosher restaurant and she explained about the meat side and the dairy side. We talked about her making aliyah and how things had changed over the years–how getting washing machine was difficult back in the day. She was very proud of her family–she took home our leftovers to share with them. Little Leah helped so many people–may her memory be for a blessing.

Leah and all of my friends will live on in the cherished memories of all who loved them. Each created a unique legacy–via their words and actions–that can never be diminished or forgotten.

If you were Irish and grew up in 1970s, you probably had a few Clancy Brothers albums. My family did, and that is how I came to know this traditional song:

Of all the comrades that e’er I had
They’re sorry for my going away
And all the sweethearts that e’er I had
They’d wish me one more day to stay
But since it fell unto my lot
That I should rise and you should not
I gently rise and softly call
Good night and joy be to you all.

Note: If you are a patient living with metastatic breast cancer, please consider filling out this Life Review Letter. It is an easy-t0-fill out form that makes it easy to share your thoughts with your family.

Read more Stage4Lifer stories and full campaign details here.

 

Leah's beautiful hands. She wrote the name of the light rail stop in Hebrew so we would know where to get off: "Tachana Merkazit."

Leah wrote the name of the light rail stop in Hebrew so we would know where to get off: “Tachana Merkazit”

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