If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body, but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.

“What can I do to help?”

This is the sincere, often reflexive, response people have when they find out I have cancer. When I was diagnosed with leukemia last May at the age of 22, my boyfriend, Seamus, sprung into action as my CCO: chief caregiving officer, after my parents. As the news of my diagnosis spread, my friends, acquaintances — and even some strangers — formed a loving support network. It was a comforting reminder of how selfless people can be.

But while most of my friends and family would help me in a heartbeat, knowing how to help can be a daunting, even paralyzing, challenge. Over the past eight months, through seven hospitalizations and six rounds of chemotherapy, Seamus and I have sustained a running dialogue about what it means to be a caregiver and a care recipient; what it means to be in love with one another while my body’s at war with itself.

This guide to helping a friend with cancer is built from parts of our many conversations on the subject of caregiving.

  1. Say “I don’t know what to say” — A cancer diagnosis can paralyze the lines of communication between friends. Some people freeze up and don’t say anything at all, while others dwell on finding the “perfect” words. If you’re at a loss for words, say so. If you have a lot to say but don’t know where to start, say that, too. Honesty rules. I’ve never felt offended by someone who doesn’t know what to say, but I’ve felt hurt by those who don’t call or write at all. Don’t let the perfect be the enemy of the good. 
  2. Be an equal opportunity listener — Cancer is a gloomy subject — there’s no pretending otherwise. While your instinct can be to immediately steer the conversation toward the cheerful, it’s vital for a cancer patient to feel comfortable venting feelings of fear, sadness, anger, loss, and isolation. One of the most important things you can do as a friend is to make it clear that you are willing to listen to both the good and the bad.
  3. Assess the specifics — Cancer patients are often too tired or too polite to respond to the broad question of “How can I help?” Take the lead and ask specific questions. Without being pushy, you’ll find areas where you can step in: Who is going to look after them during the day? Can they prepare their own meals? What about transportation? Are there other people close to the person with cancer who also need support?
  4. 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.
  5. Do what you do best — Do what comes from the heart and follow through. Please remember that the patient doesn’t expect you to compose a song if you don’t play an instrument. Lending a hand is easier when you play your strengths. If you love to cook, drop off a homemade dish; if you’re an artist, make something to hang on the hospital room wall; and if you’re an organizer, offer to gather research or to take notes during medical appointments.
  6. Take care of yourself — You hear it a lot: Caregivers must take good care of themselves, too. No matter how upset or stressed out you are about your friend’s illness, it is critical to be selfish about your own health. Nutrition is important, especially because bad “comfort foods” beckon in times of stress. Regular exercise, even walking, is crucial for the body as well as the mind: Some of the best thinking happens when your body is in motion. Perhaps most important of all is getting enough sleep. Love does, in fact, have boundaries. You must take care of yourself to be the best ally to your friend.
  7. “No need to write me back” — Since my diagnosis, I’ve been showered with the warmth of letters, emails and cards of support. These messages, filled with love and positive energy, are my daily reminders that I’m not alone in this struggle. But finding the energy to write back can feel like a herculean task. You may be able to dissolve any potential stress for the patient by reminding him or her that there’s no need to respond or write a thank-you note.
  8. Distraction is a godsend — While you should be careful joking about cancer (everybody’s sensitivity differs), some juicy gossip, a funny joke, or a good movie can go a long way in lifting someone’s spirits. Humor may feel out of place next to IV bags and bedpans, but it can be an essential counterweight to the gravity and absurdity of cancer. Don’t feel like you can’t be the bearer of good news. Bring magazines, music, stories and sunshine.
  9. Get involved in the cause — As someone who will be receiving a bone marrow transplant this spring, I am deeply moved by my friends who have signed up to become bone marrow donors or taken time to learn about my disease. Join the bone marrow registry, give blood, organize a fundraiser, or donate a sum (however small) to cancer research or an organization of your choice. It’s a gesture acknowledging that cancer affects communities of strangers as well as the people you know.
  10. “It’s time for me to go” — Long visits don’t necessarily mean better ones. Visits needn’t be rushed, but please keep in mind that the sick person doesn’t have the same energy level as you do. Be attentive to signs that the patient needs to rest.
  11. “I love you” — If there’s ever a time to tell a friend or family member how much you care about them, this is it.

And now, for the “donts.”

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. 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. 2. Don’t ignore someone with cancer because you don’t know what to say. Say something authentic and from the heart. The old joke about voting applies: do it early and often.
  3. 3. Avoid questions about mortality. “What are your chances?” and “How long do you have?” are major no-nos.
  4. 4. Don’t talk about your friend/cousin/uncle who died of the same cancer.
  5. 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. 6. Don’t say to someone who’s just lost all of her hair, “You look like [insert: an alien, avatar, Pinkyor The Brain, Gollum].” This is not the time for the Beat-poet game of “first thought, best thought.”
  7. 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. 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. 9. Don’t tell someone, “Wow, that sucks” upon hearing of their illness. Yes, we know it sucks. Reminders are not necessary.
  10. 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.

9 Responses to “Advice”

  1. Mark Troll April 3, 2012 at 1:15 pm #

    Very good points, very intelligent, sensitive. I am a lymphoma survivor — I had a curable case that was easy, so no comparison to your medical situation. Similar sense of surprise and mortality.
    More effective treatments are being worked on, so much room for hope. Best wishes to you. You are handling this with grace, bravery, and intelligence, I admire you. No need to reply.

  2. Ganga April 4, 2012 at 8:48 pm #

    Suleika: I was moved by your nyt column and your blog. I wish i could help but I don’t know how.
    Hang in there. Keep blogging when you can. Rooting for you.
    No need to reply.

  3. Save the Cord Foundation April 19, 2012 at 7:38 am #

    Just wondering if the doctors have ever suggested using cord blood to treat you??? Or if it would apply in your case?

    I have a friend who was diagnosed with Leukemia at 35. They treated him with 3 cord blood matches. The procedure was done in France but is also available in the US. He is alive and well today. I don’t know if it was exactly the same Leukemia but it could be worth asking about.

    Cord blood is being used for a lot things now and it is 100% natural, not controversial like embroynic stem cells. It’s simply not the same thing. Cord blood is collected at birth. If it is not collected, it unfortunately just gets thrown away (a big waste!).

  4. Scott April 19, 2012 at 2:45 pm #

    Thanks for sharing. I wish you a long healthy happy life. Good luck with treatment and hope you get well soon.

  5. Save the Cord Foundation April 20, 2012 at 3:32 am #

    Sorry, my last post accidentally got cut off a bit. . . I just wanted to encourage you to stay strong and explore ALL options.

    Fighting a disease takes strength and vision to see beyond today. It also takes persistence, like running a marathon. I think you and your family have all of these qualities based on the many things you have written here.

    Our thoughts are with you and your family as you push forward to the next step in fighting this disease. Stay strong, you will win!

  6. tgbg April 24, 2012 at 8:45 am #

    Through Faith in God, blessings will flow. God Bless!

    P.S: Fantastic posts. Such courage

  7. Benjamin Gogolin April 27, 2012 at 5:39 am #

    Hi Suleika,
    I just found your articles on NYT and I am looking forward to reading about your journey to being cancer free and joining us, the elite lymphoma/leukemia survivors.
    For me it will have been 10 years coming in November when I was diagnosed with a form of NonHodgkins similiar to leukemia, large cell lymphoblastic lymphoma. I was 22 at the time.
    The very brief details of my journey: 9 months of intensive chemo, 20 spinal taps, 3 months of radiation, and finally 24 months of maintenance chemo.
    I tell people all the time that cancer was the best thing to ever happen to me. It is something that will awaken so much more in your life, you will someday have a new gratitude for all the small things in life that was once taken for granted.

    Since my cancer treatments, I went back to school to help people everyday. I became a Registered Nurse.

    There is not much that I can offer for advice right now except:

    1. Everything happens for a reason.

    2. And even when things seem at their worst, remember that God wont give you more than you can handle.

    If you ever have any questions from a fellow young adult cancer survivor, please feel free to ask.

    Best Wishes, Benjamin

  8. Chuck Hughes May 28, 2012 at 4:00 am #

    You have already achieved a lifetime of accomplishments. WOW! I can’t imagine anyone handling a situation like this any better than the way you are. As a musician I was fascinated by the story about how you came to start playing the upright bass. I believe in the power of music to heal. I know it works.I look forward to hearing more about you and to actually being able to listen to you play music. You are a true hero and I admire your strength and bravery in the face of such challenges. Thank you for sharing your story with me. I will be sending my thoughts and prayers for a full and complete recovery. Chuck

  9. July 27, 2012 at 10:58 am #

    Suleikha, you are nothing short of awesome. As a psychiatrist, I think we need to remind even medical professionals of these guidelines, as they can often become desensitized to chronic illnesses they see every day.

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