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.
- 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.
- 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.
- 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?
- 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.
- 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.
- "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.
- 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.
- 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.
- "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.
- "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.
Our dialogue is always continuing. What are your tips for helping loved ones who are ill?
Suleika Jaouad writes a regular blog at Secrets of Cancerhood. This post is a follow-up to her last entry, "10 Things Not to Say to a Cancer Patient." You can follow her on Twitter here.
Seamus McKiernan is an associate blog editor at The Huffington Post.
For more by Suleika Jaouad, click here.
For more on cancer, click here.
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How to Help a Friend with Cancer
How to Respond When Someone is Ill or Injured http://healingwhole.blogspot.com/2011/07/how-to-respond-when-you-learn-that.html
Unique Gifts for Hospital Patients http://healingwhole.blogspot.com/2011/07/unique-gifts-for-hospital-patients.html
The side bar of the site includes Caregiver Resources, which provides a wide array of information for those who are at home or long distant caregivers.
God (or whoever or whatever you believe in) give you strength. Don't forget to nurture yourself.
To add a little bit to #11--the effects of cancer and cancer treatment linger for a long time and are often permanent. Your friend may have completed treatment and/or be "in remission" but may be dealing with long-term changes of many kinds (lymphedema, fatigues more easily, changes in hair, skin, etc.). Remember that and don't expect that because they have completed treatment then "the cancer is over."
Which brings me to a comment NOT to say--"now that the tumour/lump has been removed, the cancer is gone." No it's not--we can't ever know for sure and that statement denies that reality.
Another suggestion--even if you don't live nearby, take a leaf from the ChemoAngels organisation and send a cheerful card or note once or twice a week. Add a little gift every once in a while (a bag of a special tea, a magnet relating to a hobby or interest, etc.). It's not the gift itself as much as the kowledge that someone is thinking of you. This meant a great deal to me as I was living alone during chemo--I could handle most of the daily living stuff, but it got lonely without going to work and socialising. Knowing that a friend on the other side of the continent is thinking of you makes a huge difference.
When we endeavor to engage in helping our Brother or Sister when they are falling, we may receive more than we first realize as a result of our dedication to their needs.
It is a humbleing experience that brings great clearity to those who are fully present in the walk with a friend.
I urge any who are able, to take the time and reach out to someone you love in need, lift them up and hold their hand as the face life's greatest challenges.
You will learn much and the rewards in your own life will enlighten you.
Bring Peace where ever you go ! ! !
If you are looking for a doctor or specialist ask your nurses, they know the best docs.
You should know that it may be an ethics problem if they are asked directly for a medical referral, but it's OK to ask 'who would you go to?'.
And don't feel that you always need to bring food/treats. Sometimes, a handwritten note conveys more than anything else what you're feeling!
One more thing-- don't EVER offer money to any staff.
My hope is that these well thought out tips have made me a good friend to her at this time.
My wife was given a terminal diagnosis 12 years ago, at age 35. We received a lot of support in the beginning, but she didn't really get better, and she didn't die. She has been 90% bedridden since then, with lots of scary ancillary problems. Most of our friends couldn't deal with that, and the depression it caused our whole family to suffer (which eventually caused us to withdraw a bit as well).
I would add one more to your very fine list.
#11 - Keep reaching out ! Understand that this illness has a psychological aspect of sometimes severe anxiety and depression for the patient and all those close to her/him. This can easily cause caregivers to stop normal social ativities, and can really hurt children. Withdrawl makes things worse, but is a very common reaction. It seemed normal for me to devote all my spare time to just "being there" for my wife. I stopped doing the things that kept me socially connected, and eventually all those friendships just faded away. It was far worse for my wife, who now has basically no friends at all, other than those old long distance friendships.
So friends, if you know someone in this situation, keep reaching out. If your friend doesn't feel like talking today, bring by a prepared meal tomorrow (best advice in the world). If they don't get better, keep reaching out. Keep reaching out. Keep reaching out.
I have come to understand that the falling away of friends is a pretty normal situation, and I certainly don't blame them, or think of them as bad friends. Everyone I know that is caring for a dying/chronically ill spouse has related the same experience. I have been wanting to join a local caregivers group, and your message has helped me to grow a little more resolve to do that. I do not like the loneliness that comes with this role. And GOOD for you, with your visits to people who are likely feeling even more alone. None of us can make it by ourselves, we need company, companionship, and friends just to get through a normal life. Getting through tough times means we have an even greater need. I love to see that you are reaching out like that. It's an inspiration to me.