BY DEBORAH J. CORNWELL/Â Having cancer or caring for a cancer patient in the family is hard, but cancer during traditionally happy holidays is even harder. Itâ€™s a time when each family enjoys traditional shared activities usually characterized by good food, drink, and company. Yet how can you carry out these traditions when youâ€™re in the throes of cancer treatment or even dealing with the aftermath?
The most important message from cancer caregivers who have worked through these challenges is to seek normalcy, no matter what the patientâ€™s prognosis. It may sound counterintuitive, but itâ€™s profound. It all stems from the issue of control.
Throughout the cancer-care process, both caregivers and patients experience a fundamental loss of control. On some days, it may feel as though there is nothing left of the â€œgood old days.â€ They describe their quest for normalcy — for moments of P.C. (Pre-Cancer) life — and their feelings that every aspect of their lives has been turned upside down. Theyâ€™re less available than usual, and even when available, they may be feeling depressed, anxious or preoccupied. Perhaps worst of all, their friends and relatives often donâ€™t know what to say, or do, to help.
The combination of these factors can make the holidays feel like a particularly sad and lonely time, and it might bring the temptation to mourn whatâ€™s been lost. But cancer caregivers recommend that you do just the opposite â€•that you try to maintain a few of your past traditions, social connections, and day-to-day activities in the interests of being able to celebrate what you still have.
So … exactly what does this mean? Pursuing normalcy means doing four things:
KEEP IT FESTIVE
As tempting as it might be, donâ€™t ignore the holiday. Instead, find a way to put a smile on your and your patientâ€™s faces. There are several things to try:
Make sure you find something every day to bring you joy.
It may be a babyâ€™s laugh, or smelling a rose, or telling a joke that breaks a loved oneâ€™s sense of depression or isolation. It may be preparing the worldâ€™s best clear chicken broth for a patient whoâ€™s having trouble keeping food down, or it may be just a few minutes holding hands while favorite holiday music plays.
Identify a few key elements of your traditions that you can maintain. James, who has been fighting multiple myeloma for over 20 years, spent three Christmases either in the hospital or away from home as a result of treatments or bone marrow transplants. When he was hospitalized, family members brought a tiny artificial tree with a few artificial ornaments and put it up in his room. They gave him gifts that would make him and others laugh; can you imagine lounging pants with reindeer on them, or a â€œBah, Humbug!â€ sign hanging on the IV stand? His wife even donned a mask and gloves and used pasteurized egg whites to make icing for his favorite holiday cookies while he was in isolation.
Maintain some of the traditions, like Christmas Eve Mass and decorated sugar cookies, or lighting the Chanukah Menorah and giving the kids chocolate coins.
KEEP IT SIMPLE
Caregivers are often so tired and stressed when the holidays come that even the idea of all of the traditional holiday activities and â€œfixingsâ€ can feel overwhelming. This is an important time to focus on simplicity; donâ€™t even think about buying or doing too much. Only do the part of the holiday that matters the most for you and your patient. That means:
At home, if you decorate, bring out only your favorite ornaments. Keep decoration simple, and focus on things that remind you of the good times.
Consider postponing gift-giving completely and focus on togetherness. For adults, time with family and friends is usually far more enriching than opening presents.
If you must shop for gifts, find ways to do holiday shopping on line or by phone, for things like a decorated tabletop tree or a basket of fruit or cheese goodies. Also consider developing a theme, like â€œlaughterâ€ or â€œcomfortâ€ that can focus gift-giving and divert from the daily stresses of treatment.
Think about playing a game with family or friends that will bring laughter and good feelings.
Let people do things for you. Keep a notepad handy for noting who brought you things and when you thanked them. You might even want to keep some little bags of Hersheyâ€™s Kisses or Ghirardelli mints next to your front door as a thank-you so you donâ€™t have to write thank-you notes.
KEEP IT SOCIAL
Remember that the real meaning of the holiday is togetherness, whether that means gathering together family members or getting together with friends. Family and friends bring normalcy.
There are two reasons for you to let others help. First, the patient needs friends, now more than ever and especially during the holiday season that represents togetherness. Too many people are afraid of cancer â€• itâ€™s not necessarily that they think they can catch it from the patient, but they donâ€™t know how to talk to either of you, so they may shy away. Encouraging friends to stay close reminds you of normalcy.
Second, no caregiver knows how long the cancer-caregiving experience will last. It can last for a few weeks or for over 20 years. You may well need friends and their help a lot later in your caregiving, especially when you get caregiver fatigue.
So make sure you reach out to friends and family. If invitations to you both dwindle, invite others to your house. Sometimes friends donâ€™t want to intrude on your privacy, so they stop inviting you out. Make it clear to them that youâ€™re determined to maintain your social connections, even if the visits are shorter or closer to home.
KEEP IT POSITIVE
Cancer disrupts your whole life, and sometimes itâ€™s hard to remember the good things, the things you still have. For Carl, that meant learning how to swim even after one leg had been amputated, because he loved swimming almost as much as he loved his wife. For Mike Sâ€™s wife, it was making sure the family still got together for each holiday and that they continued to build strong traditions, even though he was fighting terminal pancreatic cancer. For Artieâ€™s daughter-in-law and grandchildren, it was about continuing to leave cookies and milk for Santa Claus.
Finally, if youâ€™re dealing with the aftermath, following a patientâ€™s death, and youâ€™re wrestling with how youâ€™ll get through the holidays, be willing to change family rituals. Consider focusing the holidays around family and friends in a new setting. Davidâ€™s family had had a ritual about Christmas, and after he died, his parents stopped doing Christmas on the East Coast and started doing it in California with their daughter. Another caregiver scheduled a family trip over the holidays, so that the patient and his or her loved ones could be together in a stimulating and new environment that would give them lots to see, do, and talk about other than cancer.
Many cancer patients live long and happy lives, well after their initial diagnoses. Holiday periods nourish their spirits and remind them how much they have to live for. Family caregivers can help lengthen their lives simply by reminding them of normalcy and reducing anxiety. They can do that by celebrating holidays with zest that keeps things festive, simple, social, and positive.
Deborah Cornwall is a cancer survivor and has over 20 years of experience as a leadership volunteer for the American Cancer Society at national, regional and local levels. She is also the author of Things I Wish Iâ€™d Known: Cancer Caregivers Speak Out. Visit www.thingsiwishidknown.com.