That’s a question you’ll hear often when you share the news of a cancer diagnosis. But it’s surprisingly hard to answer when your mind is whirling with shock, anxiety and complex medical data. Right after your diagnosis, all the concern and questions don’t make you feel better—they make you think one thing: You are sick. You’re so sick, in fact, that many people are going out of their way for you, and how can that be good? It’s unsettling.
Beyond that, some individuals dislike being treated—in their view—as though they are different, and others believe requiring assistance will cast them as being needy.
“All the people offering to help is a reflection of your reality,” says Nyra Hill, a licensed clinical social worker at Main Street Clinical Associates in Durham. “Those offers make you feel that you are very sick. And being at the center of attention makes many people uncomfortable.”
So, in the first phase, the sudden offers and donated meals can actually heighten the stress of your situation, especially if someone stopping by with dinner lingers with a concerned expression and asks for medical details—a draining conversation you probably don’t want to have. You might even feel you must put on a brave face to make your guest feel better.
That’s part of the reason why many cancer survivors wish to remain independent and/or to fight the disease more privately with just family, and that’s certainly their right, but don’t let pride stop you from accepting the assistance that could dramatically improve your life.
The first piece of advice, for those who are unaccustomed to receiving help, is to be careful in how you release the news of your diagnosis. Camille Andrews, whose partner, Marcel Fortier, lived 14 years with stage IV non-Hodgkin lymphoma, cautions against telling everyone you know at one time. You may reach a point where you don’t want one more “I-just-heard-the-news” phone call.
“Be slow in how you let the information out,” Camille says. “Many people react to the news in ways that make themselves feel better. They bombard you with caring gestures and information that you don’t really want. And you don’t know how long that journey will be, and most friends won’t hang with you that long. What you need is a few people you can be truly honest and vulnerable with.”
As you move into phase two, when your treatment plan is laid out on a calendar and your thoughts have settled, the overflow of generosity may take on a different meaning.
“The other end of the continuum from being reminded how much you’re sick is being reminded how much you’re held [by loving friends],” says Nyra, who is also a breast cancer survivor. “I never knew how much I had in my life until I was sick. Looking at both sides makes the sickness reality more bearable. Over time, it makes being sick less negative, and the person becomes more receptive to help.”
By phase two, the phone calls, note cards and donated meals have dropped off, but you still may have needs for child care, rides to appointments or the diversion of nonmedical conversation. How do you ask for help when people have stopped offering? This is especially difficult for people who in general like to give to others but are uncomfortable receiving.
Some patients don’t like the feeling of obligation that asking for a favor entails. They worry that the person asked won’t say no if they need to, that there’s no way they can pay back the favors. “People don’t do kindnesses to be thanked,” emphasizes Amanda Romaniello, a licensed professional counselor at Family Centers in Darien, Conn., “but [if you feel the need] you can express your gratitude in small ways. Write a thank-you card, or give them a gift card for a coffee shop they like.” You’ll never be able to pay back exactly what you received, but you’re feeding the deeper caring connection that enriches both giver and receiver.
Kindness Goes Both Ways
I was known for being capable and competent and, when diagnosed with breast cancer, didn’t want to show my fears. On one occasion, I was going to be alone at home for several hours after a chemo treatment. I would probably sleep, but I didn’t want to be alone. After worrying about it, I called a book-group friend and asked if she’d read at my home while I slept. Of course she would. In worrying, I had underestimated my friend’s kindness. Would I have done it for her had she asked? Certainly. Which brings us to a good measuring tool that will make you feel more comfortable about asking a favor: Would you do what you’re asking for someone else?
“The biggest problem is that people don’t know what to do,” says Amanda. “People who care about you are willing to do what you want them to do, however small the task. But the recipient needs to give the helpers guidance.”
Most people like to help and will help if you let them know what you want. “I ask my clients who resist asking for help to remember what it felt like to help someone else—how meaningful it was to be helpful,” Nyra says.
Allowing friends to do things that help you is actually a gift to them, and you open the door for a caring connection that you might not have shared before. When you let them be helpful, you are giving them an emotional reward.
Sometimes one person will help set up a care circle—a network of helpers the cancer fighter can call upon for particular tasks. “I had the best experience of that,” Nyra remembers. “They modeled it on the book Share the Care (www.sharethecare.org), and a number of friends signed up for what they wanted to do—give rides to my children or sit with me in chemo. I wanted someone with me in chemo, and I had a list of people who said they’d do that.”
Today there are many online resources to help coordinate such care circles. For example, Meal Train (www.mealtrain.com) allows a person who needs help with meals to register (or be registered) online, complete with their likes, dislikes and foods they can’t have. A Web-based calendar is thus created that allows participants to sign up to provide meals without troubling the sick person with phone calls.
Of course, not everyone has an “organizer” friend or family member who will help arrange such intricate plans. I didn’t. My family did most of what I needed, but I grew happier to accept an offer of help. I especially liked the company of those who were familiar with medical issues, but who could talk about something else. After a while, I could do chemo alone, but some tests unnerved me and when my husband was at work, I valued a companion for them. I began to ask for help a little more often.
I found that if I asked people to do something they’re particularly good at, they’re even more eager to help. When my white-cell count was low, I needed to give myself a daily shot for two weeks. The prospect of this upset me, but my neighbor, Teresa, is a nurse. She wasn’t available for errands and didn’t cook much, but she was happy to be able to help me in this way that was monumental for me but simple for her. She gave me a shot each morning before she left for work. Another non-cooking friend was a bookkeeper. I asked if she would please help me sort out the bills and organize my insurance statements. She did, and gladly.
After the shock of receiving a cancer diagnosis, you’re going to need some time to digest everything that is being thrown at you, and that very much also includes figuring out in which areas you could use some assistance. If people are offering to help, but you don’t have anything for them immediately in mind, say, “Thank you. That offer means more than you know. I’m still trying to wrap my head around all this, but once I do I’m sure I will find some things that I would really appreciate your help with.” Then once your needs begin to come clear, you can begin to reach out with specific requests to the people who offered to help. Once you can express specific needs and can allow loving friends help you in useful ways, your spirit will be enlivened and encouraged, which will strengthen your body for its fight.
When news of someone’s cancer diagnosis begins to spread, some people/families find it too wearing to reply to every concerned caller, or it may be that the person is getting treatment away from home. In such cases, there are several great online options where a single website is created that is devoted to the patient, where one update can be viewed by all who are concerned. One great example is CaringBridge (www.caringbridge.org), a nonprofit, online organization available for communicating information and good wishes. The cancer family registers and provides what information they wish to reveal, then the patient or family members can post updates at whatever intervals are comfortable. Anyone—near or far—can sign in to read the information and can post encouragement and good wishes to the patient and the family. What is particularly helpful is that the patient can read the messages at the most suitable time, and energy is not spent telling the same information to many callers.
“CaringBridge is named very well,” says Camille Andrews. “It bridges isolation, separation and the sterility of the situation, and it gives people a bridge into your situation. I found help in allowing people to see a part of me they maybe hadn’t experienced. I used it to show something to others too—I ended every CaringBridge message with a reminder to people to look at what they have in their lives. It was helpful to me to say, ‘Take from your caring goodness to me not sadness, but a change in the way you see your own life.’”
— BY GINNY TURNER
Category: Feature Story