Building a cancer support community

Remember the old song? People who need people are the luckiest people of all? When we are going through cancer, we all need people, and it is smart to give some thought to how best to build your support community. Long before cancer, we figured out that we need our friends to help us get through life, sometimes more than others. We need each other in the bad times, and we celebrate each other in the good ones. We need our friends and families and work colleagues and everyone who is important from every part of our worlds. Include the cashier at the market who always has a smile and a cheerful remark or your mailman who remembers a treat for your dog. They are all important.

Whenever I meet a patient for the first time, I ask: Who is helping you? Who can you lean on? The first answers are usually obvious and predictable: a spouse, a sister, a next-door neighbor. Sometimes the responses are more unusual: an old college friend who heard about your diagnosis and called after years of silence or a neighbor down the street whose mother recently had cancer and who came to your door with a dinner. Part of this conversation is my suggestion that you make a list of the people you can count on and the people whom you expect to disappear. Put that list away and don't look at it for a year. When you check it again, there will be surprises.

If, at the hospital or doctor's office or treatment center, we notice that someone is always coming alone for appointments, we note it with concern. Sometimes there are good and not alarming reasons, but too often, the solitary visits are a red flag, and we try to address the situation. Are there others who could help?

Look for the helpers

If you don't have a support community already in place when cancer is discovered, there are ways to intentionally build one. Remember Fred Rogers' excellent advice: Look for the helpers. They are there. The helpers can include a neighbor or the doorman of your building or someone who represents a larger resource. Consider contacting a church or synagogue or other faith community; they almost always have a committee or group of members who volunteer to support others in need. This help can include transportation, meals, child care, or assistance with other household tasks. It may feel awkward to reach out to a faith community where you are not already known. I think of Jane who called a local church and simply said: I have cancer, and I need help. She was immediately surrounded by helpers. It is likely you would have a similar experience.

Your children's communities and networks

If you have children, think about their communities and networks. Call their schools and ask to speak with the school social worker. It is probable that the school has some existing support programs that can help you. If your children are on sports teams or participate in other ongoing extracurricular activities, reach out to those parents and coaches.

Local cancer support resources

Call your town hall and briefly explain the situation. You can say something like: I am being treated for cancer and am calling to learn about any local support resources. If there is a chapter of Neighbor Brigade in your town, call them.

Hospital and community support services

Finally, a promising and obvious spot to begin building your support community is at the hospital or clinic where you receive your care. Ask to speak with an oncology social worker or patient navigator; they will know both about hospital and community resources. Learn more about BIDMC's Hematology and Oncology Support Services.

Chat with the person sitting next to you in the waiting room or infusion area. Consider joining a support group where you will meet people who are living through the same experience and may well have suggestions as well as offering personal friendship.

Generally speaking, people want to be helpful. It is hard to acknowledge that you need help and harder to ask for it. Like anything else, it gets a bit easier with practice, and this is the time to try.