It's Always Something (30 page)

Action Tip:
Set up an environment that is free of debris, demands, and distraction. Find a corner, even a blank wall before which you might place a vase of fresh flowers, or an object that has meaning to you and is symbolic of trust and ease. Sit on a cushion or in a chair, away from noise, telephones, and the demands of others. Get comfortable; keep your back straight, so that you are not leaning into your confusion, bowed by the winds of cancer. Let your hopes and fears bombard you, as they will. When your mind is all worn out and you have nowhere else to go with those hopes and fears, reflect on what’s around you. What are the most trustworthy and reliable qualities of the symbol that you have placed before you? In what ways do those qualities reflect your own? Who is in your world? Who truly cares? Who has said they care? Who has not said it, but you know they do care, very much? What are your goals, what do you hope for? What do you want for yourself? What has always been missing in your life that you might go for
now
?

This is a form of meditation, or relaxation, or whatever you choose to call it that, is focused on devising your own way to
live
with cancer. Try sitting again and then again in the same way, in the same environment, a few minutes at a time, with no goals whatsoever. Let your thoughts express and show themselves, then return to just sitting there. Don’t give up if your thoughts feel overwhelming. Let your breathing be natural and easy. Or slowly count to ten and start over again, one count with each exhalation. Alternately, focus on your object of meaning for as long as you can. As your mind drifts or leaps away, return to an image of color or light or to counting. Sit for a few minutes like this, take a break and scratch your head, walk around the room, then sit again. But don’t knock yourself out trying too hard.

If this doesn’t work for you, try instead to relax and focus on someone who has loved you or inspired you or respected you and with whom you feel your best self, or visualize a scene that once brought you unforgettable joy, maybe a walk through a pine forest, the needles soft and sweetly cushioning your steps. Can’t relax? If fears come, let them come and go. Then return to the image, the pine forest, that source you have known in your life, to whatever extent is comfortable.

When you feel completed, end with recognition and appreciation that you have such resources, even if the sole resource you’re aware of at the present moment is your sincere attempt to connect with yourself. Write down any ideas for support that came up during your meditation and use them as the basis for your own plan.

Find a Support Group
Although most support groups outside of the Gilda’s Club setting are gender-oriented or disease-specific, getting together with people of all genders and all ages in a basic cancer support group, if possible, can open your eyes to an enhanced range of friendship, information, and viewpoints;
unlike
minds will challenge you to look more deeply at what your own assumptions and choices are. At Gilda’s Club, we mix all ages and genders and types of disease at all stages in ongoing support groups. This can result in remarkable collective wisdom—and maybe even a quick boot out the door of previously held stereotypes about fellow human beings.

Action Tip:
Ask your physician, your nurse, or the hospital’s social service department for the names of support groups in your area; also look online and ask friends to research ideas for you.

Look for a Networking Group
Networking with people who have the same disease or are living in a similar social situation as you (e.g., people with breast cancer or colon cancer; single moms with cancer, gay parents whose child has cancer, siblings of cancer patients) can be especially helpful. Sometimes it takes courage to reach out to someone going through the same thing you are, and for whom the outcome is as unknown as your own may be. Still, as Gilda tells us, the risk of losing a new friend is worth the rewards of friendship, a value that has even more meaning as we live with awareness of the precariousness of life. We all have much to learn from others. And you have much to give to others as you wend your own way through the labyrinth of cancer.

Action Tip:
If you are not able to locate a local networking group, go online or call the American Cancer Society to find a group of people who have been diagnosed with the same kind of cancer with which you are living. Or ask your doctor or nurse to connect you with a person living with the cancer you have been diagnosed with, someone who would be willing to share his or her own expertise. Most health care professionals will respond positively to such a request. Bear in mind, though, that if you develop an ongoing dialogue with another patient, difficulties may arise if he or she experiences a recurrence or has matters that demand immediate attention beyond your own personal sphere.

Seek Out Lectures and Workshops
These sessions will give you information that you can use for yourself and to compare notes with others, whether at a Gilda’s Club, online, or in your local community. You may learn something about the latest medical breakthroughs in chemotherapy, radiation, or genetics; information about surgery, radiation, and their many emerging combinations; biofeedback; home care options; or an overview of cancer in general.

Action Tip:
Check out your local hospital, clinic, library, or community center for relevant lectures or workshops. Some venues may even have kitchens available, as we do at Gilda’s Club, where you can learn how to cook during chemotherapy, to nourish yourself and find ways to stay connected to the pleasures of food. Look for meditation, yoga, or tai chi classes or explore workshops on keeping a journal, writing poetry, music appreciation, and art, which may open your heart and mind as you live with cancer.

Find and/or Create Social Events
At least once a month at most Gilda’s Clubs, the entire membership gathers at the clubhouse to have a party. If you do not have such a place to gather with your family and friends, you and those surrounding you will need to be creative in sustaining a social environment in which to celebrate the miracle of your being alive, right now, whatever the outcome may be.

Please don’t make the mistake of thinking that your friends and colleagues don’t want to be around you. That’s a leftover from the days when cancer was believed by everyone to signify the end of things, a view that deadens the day that is today and the day that is tomorrow. You will learn soon enough who among your friends is too frightened of even the idea of illness or mortality to be around you and your own face-to-face encounter with that reality. But there will always be some who sincerely want to enjoy every possible moment of your lives together, whatever circumstances may develop.

Don’t isolate yourself socially, unless you are absolutely convinced, after all inner due diligence, that you
must.
And then look at that decision again. Make an appointment with a counselor or therapist, if possible someone who has worked with people living with cancer. If you have a social network that has had meaning to you in the past, ask yourself why you are withdrawing from it. For most of us, there are people who care about us and whose company we have enjoyed. Why not now? People in your social network may be uncomfortable with the cancer that is now a part of your life, but they may be capable, if you reach out, of working to stay connected to you rather than remaining prisoners of their own phobias or fears. Give them a chance. They will either let you know that they can’t handle it, and find their way out, or devise some way to sustain their caring for you, as limited as it may be. It’s hard for all of us.

Action Tip:
With the help of family and friends, if necessary, throw a barbecue or potluck supper or a birthday party, even if it’s not your birthday, and tell your friends and neighbors you are there to have a good time (even though you may doubt it yourself). There is a fine line between keeping up a false front, which leaves everyone in ignorance, and making an effort to show others that you are
living
with cancer, and that they remain a part of your life. If you have to take a “time-out” at your party, announce to the company that you appreciate their presence and are so glad that you are not in this thing alone. Your friends will be grateful to know that they matter to you.

Support Children and Teens
Children are often the forgotten members of the family—unless they are in treatment for cancer themselves. The needs of children with cancer have been met with tremendous medical success in the last years, for which we can be thankful. Less visible are other children also living with cancer—the well siblings and children of those in treatment. These children are often the unnoticed protagonists in the complex drama of the family learning to live with cancer, because the primary focus is necessarily on the family member who is ill. At Gilda’s Club we pay special attention to support of children and teens. If there is no Gilda’s Club near you, the challenge is to find ways to enable the entire family to function smoothly. While the ill child will require special attention and care on many levels, resources for this are usually available through social services. It’s your job to make sure the school knows what is going on and is kept informed as your child makes tremendous adjustments in his or her life. And don’t be surprised if the other children at school come up with very inventive, spontaneous acts of kindness. You may have heard reports of peers in grade school offering to shave their heads en masse to make a child who has lost hair to chemotherapy feel more at home in the school environment.

Siblings are not given such special perks. They may feel irrationally guilty that their brother or sister is ill and they are not; or they may even imagine that they are responsible for the occurrence. Siblings can be resentful of the special attention given the other; angry and confused about seismic shifts in the family system, depressed and anxious about what is happening. Worst of all, they may feel left out of family decision making that impacts their lives. Many parents feel that they are protecting their well children by keeping illness under wraps as much as possible, but there are no secrets, and children are often more aware of what’s going on around them than many adults. Teens are developmentally in their own worlds, and cancer can sometimes be experienced by them as a very unwelcome interruption in a life that is about to take its first independent flight toward adulthood.

Action Tip:
Despite the very real demands made on your time by the needs of your ill child, do your best to make time for all of your children, along with everyone else who may be a part of your family configuration. Keep tabs on your well son’s state of mind and help him feel that he is a continuously engaged part of the family. Make sure your daughter’s friendships are intact, and if they appear to be troubled, lend a sympathetic ear. Track school performance and, of course, be alert to behavioral changes that may be your child’s way of letting you know that all is not well with him or her. Remember, too, that some siblings will handle their fears and confusion by being “perfect” and “good,” rather than acting out in the chaos, which can be emotionally damaging to them now and in the future. Know where your teens are spending their time, perhaps being more vigilant than you have been in the past, and probably more than they’d prefer.

Find Support for the Whole Family
At Gilda’s Club, we call this “Family Focus,” which, in addition to focusing on children and teens, addresses the need for the entire family to function at its best as a unit now that illness is playing a major role in the home. Although in some circumstances intensive family therapy may be the only way to pull the family together during this time of great stress, we have found that gathering everyone together to recognize the role that every member plays, and bringing unaddressed issues into the light of day, can often make all the difference.

The Gilda’s Club Family Focus invites all family members into a cozy room at the clubhouse for a meeting facilitated by a licensed professional member of our staff, who is trained to step back as much as possible and get the family talking. Difficult family dynamics that preexisted a diagnosis of cancer will still be present and may need special attention, in which case we will refer the family outside the clubhouse for appropriate care. But we have often found that simply being in a comfortable, positive, open environment will bring the faltering family together. Even teens have been known to open up in such circumstances, and they are likely to have some very strong, often quite wise opinions on what is happening around them.

The idea is to help family members to see one another as mutual resources, and for the family unit to be seen as a powerful resource of its own. Once the family members have allowed their most critical issues to be brought to the surface, a family that has been stable in the past will usually start identifying authentic ways to be there for one another in the present. If the family has come up with some ways to better communicate about their issues around illness, such as fears of loss and abandonment, the session often ends with hugs that say more than the words that have finally been spoken.

Action Tip:
If your family is putting most of its energy into protecting one another from what each is thinking and feeling, consider meeting with a family therapist or other facilitator, such as a clergyperson or even a trusted friend who has good interpersonal skills. Your family will find that talking about perilous topics or what they had imagined to be forbidden can actually bring great relief, and free the family to be at its best for everyone. Some families have found cohesion where it had never existed before. That family might be yours.

Convene a Team of Helpers
It is not uncommon for people to offer to do “anything you need,” but then hesitate to call or initiate that offer, not knowing what will be useful and what might be intrusive; many people are also fearful that if they call or visit they might “say the wrong thing.” The person who is ill or the family member who is overburdened may find it difficult to admit to the need for help with specific tasks and to ask for it.