Wednesday, December 4, 2013

Cancer Etiquette by Elyn Jacobs

Help a friend without “I know how you feel” and other etiquette flubs

Elyn Jacobs is a cancer strategist and author who knows all about the etiquette – or lack thereof – during cancer treatment. Here she shares tips to help a friend or family member during her treatment, learned both from her practice as a cancer coach…and her own battle with breast cancer:

Well-meaning friends and family often do not know what to say when they hear the words “I have cancer.” At a time when we need them the most, they are often at a loss for what they can do to help, physically and emotionally.
Face it, cancer is a show-stopper, and well-meant actions and words can be detrimental to the fragile state of the cancer patient. To make things worse, those with cancer sometimes end up being the therapist to loved ones and friends who can’t deal with the situation; they may end up playing host when they should be at the receiving end of care.

So here are some tips on etiquette:

1. If you haven’t had cancer or don’t have a crystal ball, don’t say things like “I know how your feel” or “you will be fine” or “don’t worry, it will be okay”.
2. Don’t put on your “expert hat” and tell her tales of friends who had cancer and survived by drinking snake oil. Offer your support, offer your love, but keep your advice to yourself.
3. Don’t tell her you know someone who had cancer and died.
4. Don’t say anything that begins with “at least”—as in at least you have the “good kind of cancer” or “at least it was caught early.
5. Don’t say, “If there’s anything I can do, just let me know.” Such a statement involves action on her part, not yours.
6. Don’t offer help if you don’t intend to follow through.
7. Don’t tell her to have a positive attitude. While having the affirmation to beat cancer is a good thing, being required to be happy about it is not.
8. Don’t show up to visit with a brood of kids for her to feed and don’t expect her to entertain you.
9. Don’t avoid her because you can’t deal with the situation.
10. Don’t expect her to reassure you that she will make it through.

So what can you do?
1. Offer to accompany her to the doctor.
2. Offer to field phone calls so she can get some rest.
3. Offer to pick her kids up at school and drop off dinner.
4. Invite her to go for a walk with you if she is up to it. Or you can offer just to sit and listen, really listen.
5. You can say “I don’t know what to say” and give her a hug (see above—don’t avoid her— she needs you now).
6. Acknowledge that she is not just her cancer; she is a person with cancer who might like to talk about something other than her cancer.
7. Once treatment is over, acknowledge to her that there is no going back to the old normal. There’s nothing quite like a cancer diagnosis to challenge your inner core. We will hear, “but I thought you were done with treatment?” As if our lives are normal again post formal treatment. The truth is, nothing for her will ever be the same.

- See more at: http://survivingbeautifully.com/cancer-etiquette-elyn-jacobs/#sthash.hTky2hoh.dpuf

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Wednesday, June 5, 2013

10 Things NOT To Say To a Cancer Patient

Suleika Jaouad’s Caregiver’s Tool: 10 Things NOT To Say To a Cancer Patient

Posted on June 5, 2013 by karen

This article was originally published in the Huffington Post.

by Suleika Jaouad, Cancer Survivor

Introduction by Pat Taylor

As the editor for the Caregiver Section here on CKN, I am always on the lookout for practical information that provides us with the necessary tools to navigate through the confusion and uncertainty that constantly presents itself when we are caring for someone with cancer. Sometimes if we are lucky we get some practical advice that saves us a lot of grief and misunderstanding along the way.

Enter Suleika Jaouad a 24-year-old writer, inspirational speaker and healthy living advocate. She is the author of a weekly New York Times column, “Life, Interrupted”, about her journey with cancer as a young woman.

I first heard Suleika speak at the Critical Mass conference in Austin, Texas last November. She was articulate, poised and joyfully candid in her presentation. The second time we met was at the OMG 2013 Cancer Summit this past April. Again, she spoke with such certainty and clarity that I knew I had to ask her if she had any advice I could share with our CKN readers. I was looking for articles that might fit our monthly theme for June: “What I Said And Wish I hadn’t…What I Didn’t Say And Wish I Had.” She sent me her list, also recently posted on the “Generation Why” blog at The Huffington Post.

10 Things NOT to Say To A Cancer Patient

by Suleika Jaouad

When I was diagnosed with leukemia last May, I couldn’t imagine what lay ahead for me. The last eight months may have well been eight years. It’s been a blur of blood tests and bone marrow biopsies, fevers and infections. Any cancer patient can tell you that the disease turns you into an ersatz medical student, whether you like it or not. But navigating the social dynamics of living with cancer — communicating with family and friends about my diagnosis, symptoms, fears and hopes — was a challenge I did not expect.

The oncology world is overdue for an etiquette guide. As a commenter noted on my blog, unless you’re Seth Rogen in 50/50, there’s no script for what to say to someone with a life-threatening illness. But if you can avoid saying these 10 things, you’re off to a good start:

1. Don’t ask, “Is there anything I can do?” unless you mean it. If you do, then just do something! When you’re sick, asking for help is tiring — and it can make you feel guilty or pathetic.

2. Don’t ignore someone with cancer because you don’t know what to say. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often.

3. Avoid questions about mortality. “What are your chances?” and “How long do you have?” are major no-nos.

4. Don’t talk about your friend/cousin/uncle who died of the same cancer.

5. Don’t use nicknames that refer to the person’s disease. They can come off as offensive, even if they’re meant as a joke. These are a few names that I’ve actually been called: fuzz head, baldy, Suleikemia (really?!).

6. Don’t say to someone who’s just lost all of her hair, “You look like [insert: an alien, avatar, Pinky or The Brain, Gollum].” This is not the time for the Beat-poet game of “first thought, best thought.”

7. Don’t put undue pressure on a patient to change doctors or therapies. You may mean well (and you may be right), but be aware that how you offer input can be as important as what you’re offering. What worked for you may not apply to someone else.

8. Don’t just repeat phrases like “everything will be OK” if the patient is feeling scared or upset. Instead, just be a good listener.

9. Don’t tell someone, “Wow, that sucks” upon hearing of their illness. Yes, we know it sucks. Reminders are not necessary.

10. If you say or do something awkward, rude or out of line, don’t pretend that it never happened. Apologize, and ask for a redo! It’s OK to make mistakes. Cancer patients are used to these kinds of blunders. We’ll understand. Just don’t play the ostrich in the sand.

If you’ve made any of these “mistakes,” welcome to the club. I created this list from my own experience, not to inspire guilt or cast blame, but to unite us all in the realization that to talk about cancer is first to fail — then, to “fail better” the next time.

From Pat:

Thank you, Suleika, for providing another tool for our CKN readers. It is a clear, honest and practical tool list for we Caregivers who continue to struggle with what to say and not say to our loved ones as we wind our way along this often unnerving and challenging, yet at times enlightening, roadway of life with cancer.

Suleika Jaouad writes the weekly column “Life, Interrupted” for the New York Times, chronicling her experiences as a young woman with cancer. She is a women’s health advocate and motivational speaker, with a special focus on young adults. Suleika has also been featured in Glamour magazine, Women’s Health magazine, NBC’s Weekend Today Show, NY1, and NPR’s Talk of The Nation and All Things considered. A triple citizen of the US, Switzerland, and Tunisia, Suleika graduated with highest honors from Princeton University in 2010. Shortly after graduation, at age 22, Suleika was diagnosed with myelodysplastic syndrome and acute myeloid leukemia. After almost 2 years of chemotherapy and a bone marrow transplant this past April she is still in treatment and continuing to discover what it means to live a life, interrupted.

Follow Suleika on Twitter @suleikajaouad or visit her blog, Secrets of Cancerhood.

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