Friends and Family

When someone you care about is diagnosed with cancer, it’s difficult for everyone. Not just the patient and immediate family, but everyone around them – extended family, friends, neighbors, colleagues. No one wants to say the wrong thing. Everyone feels helpless. You don’t know what to do. You want to help but don’t know how. And without fail, when people are uncomfortable is when words just start flopping out of their mouths. It’s as if the mouth is operating separately from the brain. We’ve all been there. If you do have one of those “foot-in-mouth” moments, don’t beat yourself up. Your loved one knows you meant no harm.

Here are a few ideas to help with that difficult time:

Don’t be afraid to make the first move. E-mail, call, send a card or note.
Simply saying “I don’t know what to say,” or “I’m thinking of you,” is enough. Just knowing someone was there and cared was all I ever wanted.
Be sincere. Among the oldies, but goodies: I’m here for you. I care. I love you. I’m so sorry. I hate that you have to deal with this. You are special. I’m proud of how you’re handling this.
Make them laugh. Humor makes things less scary.
If you’re calling or sending an e-mail, say, “Don’t worry about calling me back. I just wanted you to know I’m thinking of you and I care.” And mean it.
Sometimes it’s OK to simply say nothing. Just be there to listen. Offer to be there if they want to talk. Offer simple words of compassion, a hug, or a shoulder to cry on.
Usually an off-the-cuff, “Let me know if I can do anything,” won’t get a response. It can come across as insincere. Try, “I’m not sure what you need, but if you can think of anything, please let me know.” And ask consistently over time.
Offer specifics – “I’m at Target, can I get you something?” or “Do you need laundry detergent?” or “Would you like me to pick up some milk or juice?” Offering something specific shows you are serious about wanting to help.
Another option is to ask, “Is there something I can do to make this easier?” or “Would it be OK if I…”
Most importantly, if you offer help, mean it. Do your best to be there if the patient or family asks for help. There is nothing worse for the ill person than getting up the nerve to finally ask for help and then being given what seems to be a lame excuse. It’s hard enough to swallow your pride and ask for help. If you’re turned down, it becomes doubly difficult. When that happened to me, I wouldn’t ask that person again. It was simply too hard to go through.

Potential landmines:

Don’t offer a false sense of hope. Don’t say, “I know you’ll be fine.” No matter how much you want it to be true, that’s not something you can promise.
Unless you have walked the same path, avoid, “I know how you feel.” I realize your cold may be just awful, but it really isn’t the same thing as a bone marrow transplant.
Other cancer faux pas include “I know someone who died from the same thing,” and “How much time do you have?” (Yup, people really asked me this.)
Don’t tell the patient what to do. If you are asked for advice, it’s OK to provide options, suggestions, or things to consider. It’s even OK to say, “I don’t know what I’d do.”
Realize you may not know all the medical details, so your advice may not be appropriate. Also respect the fact that your loved one may want to preserve as much privacy as possible or want to control when certain information is shared.
Avoid giving a ton of unsolicited advice. If you’re already being inundated with new and frightening info the last thing you want is more people telling you what to do.
Be especially careful with the advice you give if you are a fellow survivor. Those who are newly diagnosed will put a lot of stock in what you say. Remember that each person is different. Even if you have the same diagnosis, there are always advances being made in treatment and side effect management.
Bad advice, or too much of it can compound the trauma of a cancer diagnosis. It can sway or influence people to make poor decisions. Don’t overwhelm with info they don’t want.
Once the patient has chosen a course of treatment, don’t push alternatives that could potentially interfere with the effectiveness of the chosen path.

Once the initial shock passes:

Let your loved one know what’s going on in your life, but be sensitive. Sometimes it’s hard to hear what everyone else is doing while you’re being left behind. Perhaps send an e-mail or letter so it can be read when they are feeling up to it.
Talk about something other than medical stuff. When you’re living it all day long, sometimes you just need a break.

Little Things That Help

Offer specifics such as errands (grocery shopping, pharmacy, the post office, dry cleaner) or chores (mowing the lawn, yard work, housecleaning, laundry).
Offer rides to doctor appointments, treatment or tests.
Just visit. Have a Movie Night with your favorite flick, comfies, and popcorn. Try an At-Home Spa Day or a Football Sunday.
Offer outings such as an afternoon at the movies (best at off-peak times). Go to the park for lunch. Drive to the coast, mountains, or check out autumn leaves.
Help with their kids. Pick them up from school. Take them to the park, pool, or for ice cream. Have them over for a play date or take them to the movies. And don’t ask the kids for information about their parents. Just let them have fun.
Take their dog for a walk around the block or to the dog park.
Mail “I’m thinking of you,” cards. Especially funny ones.
Send riddles on postcards. Mail the riddle one day. The next day, mail the punch line. (The sillier the better.) This was one of my favorite things I received when I was being treated away from home. I looked forward to the mail every day.
Be the go-to person who shares information and updates. This can be done through a website such as CaringBridge.org, or Carepages.org a blog, e-mail or a phone tree. It’s an important task that often gets overlooked. If you offer to take on this role, be sure you are detail oriented, comfortable doing it, and keep the posts up-to-date whether the news is good or bad.
A one-stop online tool to organize helpers is the free, easy-to-use group calendar at lotsahelpinghands.com. It’s a private group calendar where you can define volunteer activities such as rides and meals. Friends and family can view and sign-up for the available tasks and the system automatically sends out e-mail reminders of upcoming obligations. Community members also have access to a private message board (perfect for posting updates), photo gallery and a Well Wishes Board.
Organize a food chain. There’s nothing better than a home cooked meal that you don’t have to prepare yourself. (This is a tremendous help for both the patient and family.) And there is such a thing as too many take-and-bake pizzas.

Food

Food is a great way to help both the patient and their loved ones.

Consider bringing fully prepared meals that are ready to heat or eat, such as casseroles, pasta, spaghetti or soup. Include a beverage (bottle of wine?), salad or side dish, bread and even dessert.
Put together single serving meals in disposable containers to freeze.
Organize or participate in a food chain. Even receiving a meal once or twice a week is a tremendous help.
Before bringing anything to the patient and their loved ones, be sure to confirm food allergies, aversions or restrictions.
When providing food be sure to use disposable containers. Don’t burden the patient or family with trying to get several dishes back to their rightful owners. It’s amazing how quickly servingware can pile up.
Often times raw fruits and vegetables aren’t allowed if the patient’s immune system is suppressed. Various treatments, medications and bone marrow transplantation can all impact the patient’s ability to resist food-borne bacteria that would be harmless to anyone else.
Make sure you are using good food preparation practices. Be hyper-vigilant about clean, sterilized surfaces, food storage and using only the freshest ingredients. Cancer treatment can wipe out a person’s immune system.
If cooking’s not your thing, send a gift certificate for their favorite take-out.
A HoneyBaked Ham (honeybaked.com) or gift certificate is usually good when a large group needs to eat, or for the patient and family to have leftovers. (They have both delicious ham and turkey breasts.)
Look into fully prepared commercial meal services such as Super Suppers (supersuppers.com) or Home Bistro (homebistro.com).
Treats. Something easy to snack on that’s a little bit naughty is good for the soul! Cookie assortments are always fun, as are popcorn tins.

Great Gifts

Aside from food, there are a lot of little things that are appreciated by both the patient and their family. (Consider bringing or sending small gifts on a regular basis.) Anything simple that helps pass time is perfect. Now is the time for mindless entertainment!

Magazines, DVDs and books. You can bring them yourself or use Amazon.com. (Sometimes various treatments can impact attention span. If this is the case, books may not be the best choice for the patient, however the caregiver may appreciate them.)
A gift certificate for a movie rental service (such as Netflix.com) or a magazine subscription can extend the life of the gift.
Handheld games such as 20Q, Tetris, or Blackjack. (20Q was one of my favorite toys during treatment. How in the world did it know I was thinking of a bowling ball?) Target is an excellent source.
A deck of cards. Table-top puzzles. Board games. Yahtzee.
A gift certificate for a housekeeping service.
Puzzle books such as Suduko, word searches, or crossword puzzles (perhaps only for the caregiver).
If your loved one or their primary caregiver has a hobby they enjoy, supplies such as yarn (for the knitter), model car kits, or scrapbooking supplies are appreciated.
Slippers with grips on the bottom or comfy clothes are always useful.
Infusion rooms and hospitals can be chilly, so a warm and fuzzy blanket (that’s machine washable) comes in handy.
It may seem silly, but a coloring book and crayons is a good way to mindlessly pass time, and it also allows the creative juices to flow. (Yes, even for adults.)
Both the patient and caregiver would probably enjoy a massage. You can get a gift certificate or do it yourself.
Are you crafty? Consider creating a custom hospital gown. (There is a free pattern at www.lazygirldesigns.com/hospitalgown.php) or make a no-sew fleece blanket.
Notecards with stamps are a good gift, but don’t pressure the patient to write. (This is nice to have when you do feel well enough to write.)
A journal with a pen.
A tote bag with necessities if they are spending time in a hospital, treatment or waiting room. Granola bars, fruit, water, magazines, puzzle books with pens, playing cards, candy bars… Good for both the patient and their caregiver.
Get an iPod and fill it with their favorite songs. Or create a custom CD.
A portable DVD player is great for hospitals, infusion rooms or days in bed.
A digital or talking picture frame, loaded with favorite pictures.
Don’t forget to send care packages if they are receiving treatment away from home. I was away over Christmas and received “Christmas in a box” – a tiny fake tree with ornaments. Talk about a mood-booster!

Gifts to Avoid

Avoid items with a strong scent, such as some food, lotion and candles.
Avoid live plants or fresh flowers (including the moss in artificial arrangements).
Homeopathic remedies or herbs can interfere with medications or contain potentially harmful ingredients.
Generally mylar balloons are a good option, but latex balloons can be an issue if there is a latex allergy.

Remember the Caregiver

Don’t forget the caregiver. They may be going through just as much as the patient, it’s just different.

Offer things that would ease their workload. (See “Little Things That Help” above.)
Ask how they are, not just how the patient is.
Follow much of the same advice as above – be there to listen, tell them you care.
Offer to stay with patient while they take a break. (You may need to force them to take time for themselves.) Sit with the patient while the caregiver takes a bath, reads, goes to the movies, exercises, has lunch, or just goes into another room.
Many of the gifts listed above are also appropriate for the caregiver.

Hospital Tips

The nurses or aids don’t always help with the daily cleanings (sponge baths, teeth brushing, applying lotion). If your loved one is unable to do these things, offer to help. (Having someone rub lotion on your hands or feet is a decadent treat.)
Keep your loved one’s belongings on the bedside table and leave them where they can reach them.
They might need help in and out of bed, chairs and to the bathroom.
Offer (or apply) lip balm regularly, as lips tend to dry out in the hospital.
If your loved one isn’t on a restricted diet, offer to bring in their favorite meal or snack. A home cooked meal is heaven in a hospital bed. Hospital “food” is notoriously anything but satisfying.
Make the hospital room as comfortable as you can, but don’t overwhelm them with a lot of things they’ll have to pack home. Pictures of family, pets, or a favorite vacation spot, a calendar (if it will be a long stay), blanket, pillow, iPod, and movies can make a stay more bearable. If it’s near a holiday, decorate for the season. I was in the hospital over Thanksgiving one year and just before Christmas another. My IV pole was decorated with Christmas garland.
Visit if your loved one wants, but be respectful if they don’t. They are sick, and need their rest as they’re doubtfully getting much sleep during the night.
Be considerate of the surroundings – the people next door or even in the same room. Keep the visits down to a dull roar.
Don’t use the bathroom in the patient’s room. For their physical well-being and yours, the only person who should use this bathroom is the patient.
Wash your hands before you come in contact with the patient. No exceptions.
DO NOT visit if you are sick. This includes a runny nose, sore throat, cough, fever, anything. Stay away!

Keep in Mind

Keeping in Touch

Don’t ignore or avoid what is going on and pretend everything is “normal.” You don’t need to dwell on it, but acknowledge the elephant in the room.
It’s OK to bring up the situation, even if you don’t have a close relationship (a neighbor or your kids are on the same baseball team). One of the things that touched me the most when I was away from home for treatment was my neighbors sending me notes and a Christmas gift. And these were neighbors I didn’t know particularly well.
Respond if you receive an e-mail update from the patient or caregiver. Sending out a note to 75 people and hearing back from only three is really disheartening. I felt as though others were not interested or that I was bothering them. A simple acknowledgement such as, “Thanks for the update,” or “Please keep in touch,” is enough to make the patient feel less alone.
Don’t forget the patient and caregiver. Once the “newness” of the diagnosis wears off, people get back to their everyday lives and forget the patient is still battling. Cancer can be isolating. Let them know they haven’t been forgotten with cards, e-mails, or calls. Simply saying “I don’t know what to say” or “I’m thinking of you” is enough.
It becomes difficult for a patient to reach out to others if they’re left out of the loop for an extended period of time. Missing out on everyday things can be difficult and you feel as though life is moving on without you. If others stay in touch you don’t feel so alone and it’s easier to reconnect later.
If you call and no one answers or returns your call, don’t take it personally. Don’t expect a response. Sometimes a “simple” call is just too much. Understand they may not want to or be able to talk. There are people who would call then try to make me feel guilty because I wasn’t up to calling them back. Ultimately, I would dread hearing from them.

Visiting

If the patient is up to it, visit. Don’t wear them out, but take your cue from the patient. Often times it was difficult for me to participate, but just listening to conversations between others was great distraction. I was groggy and would nod off, but it was nice to still have people near me chatting when I woke up.
Wash your hands whenever you are near the patient. And don’t visit if you are sick or have any symptoms such as a runny nose, cough or fever. If a suppressed immune system is involved, kids or those with recent inoculations may need to stay away.
Try to be a calming influence. Don’t bring any extra drama into the patient’s world.
Remember the patient is the same person inside, despite what they look like on the outside. Treatment can cause hair loss, change in skin tone, surgical scars, weight loss or gain, and a whole host of other physical changes. Looking back now at pictures of me while I was going through treatment is amazing. I don’t even look like the same person. But inside I was still me.

Family Members

Don’t forget kids if it’s their parent is getting treatment, or siblings if the patient is a child.
If you bring a gift for a kid with cancer, don’t forget their siblings.
If a kid has cancer, do something special with their siblings. It’s best to do something that the patient wouldn’t want to do.
Respect the patient’s spouse. Especially if the spouse is older, their wishes can be overlooked. Give them a voice and respect their decisions.

Big Things for All

Donate blood or platelets. More than 4.5 million patients need blood transfusion each year in the U.S. and Canada. That breaks down to one person every two seconds. Only 37% of the U.S. population is eligible to donate blood, and less than 10% actually do. One pint of blood can save up to three lives. Check givelife.org for an American Red Cross blood drive, or Google “give blood” to find other donation centers near you.
Join the national marrow registry and become a potential bone marrow donor. Full information on the National Marrow Donor Program is at marrow.org.
In some cases you may be able to donate the umbilical cord following your baby’s birth. Check http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/index.html for full information.
Donate frequent flyer miles for those who need to travel for treatment, but are financially unable. Contact your frequent flyer program for details.
Some organizations allow you to donate accrued vacation time to a coworker who is in medical need. Check with your human resources department for your company’s policy.