You can't be a fully vested member in the survivor community and not run into bad news. Bad news that rocks everything you believe about e-patients, empowered patients, medical progress, the miracles of successful interventions and also, treatments that fail.
This morning I heard about one of those failures, from a woman who is just 40, and dealing with metastatic breast cancer. She has spit, and fire, and humor, and enough intellectual energy to power rockets. Her cancer sneaks past all that.
I write this because it is essential that we understand what cancer is in some cases. Not to raise the climate of fear, but in an effort to make damn sure that women with metastatic illness are part every conversation about survivorship. Casting a wider net and building a more inclusive community helps us face and move past our own fear so we can help someone else.
When friends get bad news there are no answers.
None are expected.
But your supportive, caring presence speaks volumes.
Don't retreat or find excuses not to call or write.
Stay present.
Listen.
Make pie or ring a bell. She has not forgotten how to laugh nor is she contagious.
And by all means, keep talking.
Move the conversation forward.
Jody
This morning I heard about one of those failures, from a woman who is just 40, and dealing with metastatic breast cancer. She has spit, and fire, and humor, and enough intellectual energy to power rockets. Her cancer sneaks past all that.
I write this because it is essential that we understand what cancer is in some cases. Not to raise the climate of fear, but in an effort to make damn sure that women with metastatic illness are part every conversation about survivorship. Casting a wider net and building a more inclusive community helps us face and move past our own fear so we can help someone else.
When friends get bad news there are no answers.
None are expected.
But your supportive, caring presence speaks volumes.
Don't retreat or find excuses not to call or write.
Stay present.
Listen.
Make pie or ring a bell. She has not forgotten how to laugh nor is she contagious.
And by all means, keep talking.
Move the conversation forward.
Jody
20 comments:
Jody, I can't add a thing. Beautifully said, and such an important message to remember. My thoughts are with you and your friend.
We're in this all together. Thanks for everything.
jms
Jody this so needed to be said! We are often at a loss to know what to say to someone who finds themselves in this position - but saying nothing just increases their sense of isolation and pain. We all want to have our feelings validated and our right to express those feelings respected. When I wrote my own post on what to say to someone with cancer, I was struck by one of the comments: "don’t ignore me because you don’t know what to say. I’m still a person who has interests, hopes and dreams like everybody else. I’m sure we can find something to talk about other than cancer." I couldn't say it any better than this.Marie x
I agree, absolutely. The more we speak out on the topic, the more likely we are to diminish the fear that surrounds it. I had friends who fell away after my diagnosis because they couldn't cope or didn't know what to do. You've done a beautiful job of casting light upon a subject that most people don't consider because they've never been on the receiving end. Thank you.
We're aware of thing that don't help; knowing what does help -- is terrific. Ann, Marie, thank you.
Dear Jody,
You are so right on this! People tend to stay away when someone gets bad news. Overhere the government started an campaign on TV in which people with an terminal illness thank friends for the good time they had, ending with `to bad I don´t get to see you anymore, but I really wanted to say this to you`. The add closes with the announcemnt that 1 out of every 4 people shy away form people with an treminal illness. Your blog made it perfectly clear as well.Let´s all hope both add and blog will open people´s eyes. Hope your friends has many more friends like you, she will be alright than. Love, Annemieke
Thank you! I believe people stay away because they don't know what to say or do, so they end up saying and doing nothing! Appreciate your thoughts!
Jody, Family and friends shouldn't be afraid of saying the wrong thing but of saying nothing. That is the cruelest gesture of all.
During my treatment for breast cancer, my husband's brother & his family said nothing about my breast cancer. Not even when we were eating at the same table. Nothing!! Yes, they are totally screwed up, anorexic daughters, and James and I used to say "our kingdom to be a fly on their wall," but that was so hurtful.
Empathy, compassion, people. Try it. I promise it won't hurt the other person as much as your silence.
XOXOXO,
Brenda
Writing like this is changing the world. Keep rocking it JMS.
Υοu are damn right Jody! I have seen it happen more than once: a member of the patient group gets hit with met, she disappears, no one cares to call to see what has happen to her, how is she doing till a husband or other family member calls to announce a funeral...
It shouldn't be so! First, I thought it was indiference, it took quite some years to grasp that women fear to connect with a woman that has a met, they feel uneasy, uncomfortable, even if they were friends before...
WE need to beat fear, you say rightly that mets are not contagious and our friends need us all the more during these hard times.
Thank you Jody for saying it so nicely.
Completely spot on with this one my friend. It is a hard situation for people to handle but once they realize that there are no answers and that just a smile, card, touch can help so much it seems to help them with their own insecurities.
I remember that from my point of view on the survivor side I had to take on some of the responsibility for the awkwardness with people. Not that it was my job to put them at ease but I also felt like, "Oh, crap, what is this person going to say to me and what am I supposed to say back?" So I know I was giving off a vibe that said "Stay away". The people who pushed past that defense mechanism were the brave ones, I am thankful for them:)
Love, Deb
Jody this topic is of great interest to me. Friends appear to have deserted a 'sinking ship.' Losing a child in Nov '06 was more than some of my friends could 'deal' with. The diagnosis of a new 'met' left many at a loss. Will there be anyone left when I tell them about the latest spot on the lung?
Thanks for drawing attention to this very important subject.
Jody,
What a beautiful posting! I had a friend who had breast cancer and after 4 long years battling it, she died. I must admit that this was torturous to me, and her death really rocked me to the core.
I am glad that I was there for her, even if it was just sitting there at her bedside while she slept. The last words we said to each other were "I love you."
I wouldn't trade this experience for the world because we both grew as individuals. Unfortunately, one cannot be a part of the cancer community without experiencing loss.
Jody, I'm sorry you heard discouraging news about someone you care about. I agree, no one with metastatic cancer should be left sitting on the side lines. We are all in this together, we really are. As for friends, I have found some people most definitely retreated (I've actually seen people turn and not look my way hoping I won't notice)and they probably won't be back. They are just too uncomfortable. Then there are those who want to be "active participants" and others at various places in between. Your tips for friends, perfect. Thank you!
"Be present."
What wonderful advice. And the comments your blog has inspired are equally insightful.
Thank you all for your awesome comments. So many I've talked to talk about a period of intense isolation following the diagnosis as the news is reeled in. But then thankfully, through blogs and other social media platforms -- and by building awareness -- we can be more helpful from the start. There's obviously much for us to discuss here.
jms
Oh boy this really touched home!! I was diagnosed 2 years ago and when I needed to talk about what I was going through, my fears the fear of dying it was as if the earth swallowed my friends. Friends that I thought I could depend on. Even family. Once I had surgery, treatment with chemo, the attitude was move on get over it already. Or my friends just became non exsistant. Couldn't deal with my bald head or breastless chest.
Yet out of this the one person I least expected to say a few kind words, was there for me not with any warrior speeches..They were just there offering a shoulder because they understood...
Amen sister...preach on! Jodi you are spot on!
Great post. As a survivor and a supporter of a friend going through chemo, this is so timely. I'd much rather have someone say, I don't know what to say but I'm thinking of you, than to face silence.
Thank you for this, Jody. And for all these responses from your other readers. It is very painful to feel ignored, especially during such a stressful time. But it was so helpful, at least it was for me, to understand how hard it can be to find the words to say. Your words are a good reminder that any gesture of love and support is deeply meaningful.
You and your friend are in my thoughts.
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