If it takes a village to raise a child, then it certainly take a small town, if not a city, to get someone through cancer treatment.
And yet many people who are newly diagnosed with cancer are embarrassed to ask for help, and many of their friends and family members hang back, wanting to help but not sure what to say about the cancer or how to offer their assistance.
The task list can seem endless, especially when you are still reeling from the shock of your diagnosis. You may need rides to doctor’s appointments and chemotherapy or radiation therapy treatments. You may not feel like cooking or may not be able to cook, let alone clean, shop, do laundry, run errands and return phone calls to all the people who want to know how you are.
And you may need company—someone to sit up late at night and listen to you talk. Or sit up late at night and say nothing at all.
Your children may need rides to school and to activities, and they may need someone to take them out for fun on the weekends, especially if you are feeling sick or low energy.
Where to Start
Hopefully, you will have a close friend or two who will jump right in and help you get organized. (Often it is the spouse or partner who carries the load, but it’s very easy for the person closest to you to get burned out—you need outside help.)
Your friends may help you with the mundane things before you start treatment: cooking and freezing dinners, stocking up on herbal teas and lavender oil for relaxation, making sure things are in order. Or getting out for exercise so you’ll be in good shape to face surgery and treatment.
Keep a list of things that need to be done next to the phone. This way, when people call with offers of help you can say, “I need someone to drive my son to soccer on Saturdays,” or “I’ll be needing some help with housework.”
The people who are calling just to say “Let me know if you need anything,” may be a bit taken aback to be offered a task right away, but they did offer.
Your list may grow to be several pages long. It should contain:
- The names of people who have offered to do certain things, plus their contact information
- A list of jobs to be done
- A list of people who offered to help who can be called as back-up
- Contact numbers for kids’ schools, activities, friends and your doctors
Tape the list up by the phone, and give a copy to anyone who asks for it. You may even ask one friend to manage the list and put another in charge of returning phone calls. Everyone who had asked to be called (after your surgery, for example) should be put on another typed list.
If You Want to Help
If someone you love is in cancer treatment, offer to help them get organized. E-mail is a convenient, inexpensive way to keep in touch with friends and family near and far. (Phone bills add up fast.) You can even put up a web page with updates and jobs that need to be done.
Or offer to take over one part of this task: Set up a dinner schedule and manage it. Ask how many meals a week the patient and his or her family want. (Many people find that two or three meals a week are plenty; there are always leftovers for another day.)
Offer to be the point person for phone calls: Let friends and relatives call you with offers of help or for updates. Or offer to be in charge or transportation and arrange rides to treatments and doctors’ appointments.
The nice thing about all of this for the person in treatment is that they don’t have to worry: “Do I have a ride for Friday?” You are handling it. They can relax and think about other things.
Kids in the Family?
If you are entering or are already in cancer treatment, you may want to consult a family therapist to talk about your children and their needs while you are undergoing treatment. This is especially important for single-parent families.
The advice you will get will probably include keeping your children’s lives as normal as possible. This means that the kids do not drop out of their usual activities, even though you have to rely on other people to get them to and from sports and classes.
Keeping their routines as normal as possible, even if someone else has to substitute for you, is very reassuring to children. All the support and attention from friends and family during this family emergency also reassures children.
If the person you want to help has children, think about what you can do to keep their lives on track. This will probably mean driving them places. Or helping with homework. Or showing up to cheer at games and concerts.
A support group for children affected by cancer may also be a good idea. Cancer Lifeline has such a program. For information, call (206) 297-2100, ext. 114.
Covering that Bald Head
Most people who have chemotherapy lose their hair. Some people lose their hair from radiation as well. One of the most upsetting things about cancer treatment is that bald head. Friends can help by suggesting a hat-buying expedition or by hosting a hat-and-scarf shower. We have some resources for getting head coverings.
Some people go with the bald look but may decorate their head, with a henna tattoo, for example. The henna is not permanent, but it lasts for several weeks.
Help with Insurance Paperwork
When the medical bills and insurance statements first start coming in the mail, the patient’s reaction may be to open them and cry. Or to not even open them, just hide them in a file or a drawer. Pretty soon, the stack may be a foot tall.
You will get statements that say you owe thousands of dollars that your insurance company is not going to pay. Typically, on the bottom of the statement will be an incomprehensible explanation of the reason. Or even just a code.
A friend who has bookkeeping skills and can take over the insurance paperwork is offering an incredible gift to someone in cancer treatment. These bills are confusing at the best of times. When you are worried or don’t feel well, they are just too much.
If no friends are available to take over the paperwork, consider paying someone else to do it, or find a volunteer through work or church.
Look in the Yellow Pages under “Insurance Claims Processing-Medical” to find professional help. Expect to pay $25 to $35 an hour for this service. Also expect that an expert will save you money.
One cancer patient who went this route said that the claims processor sorted out the mess, matching statements from providers with explanations of benefits from the insurance company. She threw away duplicates, filled out forms, and sent in the ones that hadn’t been submitted to the insurance company. Then she checked for errors. She found several in the calculation of deductibles and asked the insurance company to correct them and recalculate payments to the doctors and the hospital. During her first visit, she saved the patient $630.
You can expect that the claims processor will call or write to all of your healthcare providers to establish a contact at each one. He or she will track everything, following up regularly by phone or fax. If a claim is denied, that’s not the end. “I don’t accept the first denial,” one claims processor says. “I question it on the phone and if I’m not satisfied I fax a note or letter asking for a response in writing.”
What you should get from your claims processor is a list of bills to pay, complete with addressed, stamped envelopes, and a clear, brief status report.
Leave Time for Fun
Friends and family: While you’re busy helping with doctor’s appointments, housework and bill paying, don’t forget to offer some fun things. What does your loved one like to do? Ask.
Maybe a day at the beach. (Or a week in Hawaii, for that matter.) A ferry ride. An afternoon spent watching old black and white movies like “Frankenstein” or “The Invisible Man.” Finger painting.
Going to a ball game or art gallery. Or sitting in the conservatory at Volunteer Park in Seattle and smell the plants growing.