Tuesday, February 28, 2012

Lori Hope on 20 things people with cancer want you to know

Written by  Facing Cancer Together
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Lori Hope on 20 things people with cancer want you to know
Emmy-Award winning journalist Lori Hope  discusses her book, Help Me Live -- 20 Things People With Cancer Want You to Know.
lori_hope-profileLori Hope was diagnosed in 2002 with lung cancer. She says it came as a complete shock, and although her family and friends stood by her, some didn’t know what to do.
Lori supported several friends who had cancer before she received her own diagnosis, but she says “Being there yourself, you’re awed by the reality that life could end- that you’re actually faced with the possibility of death.” 
Hope writes that most people with cancer want to feel heard, respected, understood and valued; to laugh; to be loved and above all to love!  She says the book can be that lifeline.
Listen to her advice in this conversation:
What have you learned from your own experience facing cancer?  Please share your thoughts on this topic in a comment below.
Highlights from the conversation with Lori Hope:
send-flowers-to-friendIt is OK to say or do wrong thing:  Admit that you don’t know what to say or do, but that you just want to be helpful but don’t know how to help or what to say.  This diffuses tension, and it’s better to be there and do the wrong thing than disappear. Some people may feel like they’re just not good around sick people and because they feel uncomfortable, they stay away.  This is the worst thing to do because more than anything, when you have cancer, you need that support and love… you need to feel like you matter.If it’s too hard to talk, stay in touch in other ways like sending a card or some flowers.
You need to hear success stories not horror stories:
You need to feel hope.  When you’re first diagnosed, you tend to regress emotionally.  When hearing a story about someone that died from cancer, you identify with that person who dies, and it dashes your hope.
I want compassion not pity:
Some people say to me, “Poor Lori.”  I feel like I am one of the luckiest people alive because the life I am living now, for however long, is so rich and so full- I don’t think that’s worthy of pity.  You don’t want to feel like someone is looking down on you.  What you want is to feel compassion and on equal ground… not as if there’s something wrong with you or that there’s something you did that gave you cancer.Having cancer has opened doors to being in present moment- (although we don’t like to be told the gifts of cancer from others who don’t have cancer).  I can laugh and feel freely, and enjoy the transformations and gifts that take place.
Calling a person a “cancer patient” sometimes implies a sense of pity.  But using the term “survivor” implies hope.  Most people prefer to be referred to as a survivor, but most importantly, they don’t want to be treated differently
supporting-friend-with-cancerI Need to laugh: Sometimes you just need to laugh and forget cancer for a while. People with cancer want people to know this: humor enhances hope and creates a positive outlook on world.  It can be hard to escape “cancerland” in mind and body, so humor is an escape.  Laughter is great medicine!
I need you to listen to me and let me cry: There is a need to tell our story to believe it’s real because it feels so unreal.  We need to be able to express grief, anger, and fear and be heard and accepted.  And, as a caregiver, it’s hard to accept those feelings because we want to be positive and be reassuring that everything is fine, but its NOT about YOU.  You need to focus on that person: let them talk and cry.
lori-hope-help-me-live-cancer-bookBlaming doesn’t shore up hope:You would never think to ask an AIDS patient about their sexual habits, or a heart attack victim how much meat and cheese they ate…  So, a person with lung cancer doesn’t want to be asked if they smoked. It’s not polite and not helpful. It is true that there are major health risks that are caused by smoking, but you don’t need to look back, you need to look forward.
On hearing, “You look great!”:
 Hearing these words can leave a person feeling dismissed, as if they are implying, “You look great- can you really be sick?”  I had great color, and looked athletic, but I was sick.  You feel like they’re questioning if you’re really sick.  On the other hand, sometimes it feels good to hear that you look great.  So it really depends.  A person might rather hear, “Wow, I hope you’re feeling as good as you look.”
hope_help-me-live-revised-webLAUGH, LEARN, LOVE - How to support people with cancer [originally published by Curemagazine]
L isten without judging, interrupting, or feeling like you have to say something.
A sk permission to give advice, to visit, to tell others of your friend’s problems.
U nderstand that your friend is especially sensitive because of her or his trauma.
G ive it time if your friend doesn’t feel like talking or visiting now.
H umor helps almost everyone cope. Funny movies and books can help.
L et go of the myth that everyone dies of cancer; keep hope alive!
E mpathize by trying to remember a time when you were terrified.
A nalyze your audience to determine what your friend needs and enjoys.
R un interference; keep toxic friends away from the person who’s suffering.
N o horror stories – ever! They kill hope; people want to hear success stories.
L ove her and show it by considering her needs rather than your own.
O ffer specific help such as picking up groceries or his kids, or doing laundry.
V alidate him by telling him that his feelings, even negative ones, are normal.
E xercise caution by letting her bring up the subject of her health; she may want to forget.

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