A step-by-step guide to help you navigate your way.
That descriptor, from the front of Puja Thomson’s just-released book, is broad enough to suggest it could be appropriate for anyone. And so it is. Thomson, a New Paltz resident who was born and educated in Scotland, says she wrote the book to “offer practical suggestions and guidelines to help you clarify your own process, perspectives, and choices.” We must add the detail, however, that Thomson’s book emerged from a bout with cancer.
“Puja wrote the book I wished I had,” says Barbara Sarah, a fellow survivor of breast cancer a dozen years ago. Since her own recovery, Sarah has been assisting other women with cancer in myriad ways, including accompanying them to doctors appointments. In 2003, one of those women was Thomson. Sarah saw Thomson scribbling away in a notebook filled with insights and practical aids, and encouraged her to share them with others. Thomson has woven those notes together, enriched with her work and life experience as a counselor, healing facilitator, educator, minister of the Healing Light Center Church, and founder of Roots &Wings, a multifaceted healing and educational organization. After Shock: From Cancer Diagnosis to Healing
is the result.
The book’s main sections describe what’s worked for her in crafting a healthy, balanced life. Reach out for help from others. Design a “wellness program” from your own experience, insights, and knowledge instead of using others’ ideas of what’s best for you. Craft your challenges into a hopeful, forward-looking perspective. Adopt a simple way to organize financial records and paperwork. Thomson gracefully helps you accomplish these with aid from firsthand stories of her own and from “fellow travelers” in the journey.
One of Thomson’s foremost recommendations in dealing with cancer is to reach out for help. “Each person has to go their own way,” says Thomson. “Don’t feel you have to talk if someone wants you to talk, or shut up if someone doesn’t want you to talk. There’s no one right way of doing this.” Chapter after chapter empowers the reader to create an individualized support team and guides that process.
“I believe that people in the Hudson Valley who are diagnosed with cancer have the most incredible network of support,” says Sarah, referring to our region’s diversity of hospital-based, community, organizational, and private supports.
Sarah has herself been instrumental in growing these services. Thirteen years ago, she started the Oncology Support Program at Benedictine Hospital in Kingston, which has blossomed into a versatile, innovative support network for which she received Governor Pataki’s NY State Department of Health Award for Innovation and Research in Breast Cancer in 2005. The program benefits from the creative input of many, especially women motivated to help others because of their own experiences with cancer. A sampling of its offerings:
• Nurturing Neighborhood Program: A volunteer network of cancer survivors who support newly diagnosed cancer patients.
• Kids Connection and Teen Connection: Two programs designed for young people who have a family member living with cancer, offering special events, educational materials, group gatherings, and counseling options.
• Cancer support groups for women, for men, for families, and some relating to specific types of cancers.
• Healing Circle Improvisation: A group of cancer survivors who for ten years have traveled the state and beyond, creating improvisational pieces addressing thoughts and feelings about cancer in the hospital setting, at patients’ homes, and at conferences.
• Exercise classes blending gentle stretching, T’ai chi, yoga, and movement using Smart Bells, conducted by an enthusiastic Ujjala Schwartz, a cancer survivor who invites anyone, not just cancer patients, to join her for regular exercise classes at the hospital.
Note that help begins before diagnosis, too. For instance, St. Francis Hospital has a group of volunteers like Shelly DeWitt, a retired nurse from Poughkeepsie, who accompany women during the hourlong needle-localization/biopsy procedure. “I’ve had breast cancer myself and know what they are going through,” assures DeWitt. “The procedure sounds very traumatic, and it’s also traumatic because you’re anticipating that you may have cancer. So I can help distract them by talking about their family, where they live, and so on. I can also give them reassurance, help them know what to expect, what the machine is doing, and stay with them when the technician goes in and out of the room. Otherwise, they would be alone.”
Fortunately, cancer support isn’t centered just around alleviating the distress of the illness. As Thomson’s book models, the cancer “journey” is more than figuring out how to cope with fear and treatments and finances. It is a chance to develop personal awareness, purpose, creativity, spiritual richness, connection, and other life nourishments that many of us lose sight of.
At a recent holiday party of the Oncology Support Program at Benedictine Hospital in Kingston, after-dinner activities included improvisational skits by the Hudson River Playback Theater group, based on stories from the audience. I had apprehensions: Would we witness emotionally wrenching snapshots from struggles with illness? Sarah Urech, who is a member of the theater troupe as well as director of the Oncology Support Program, was intermediary between actors and the audience of whom she asked questions about life more than about illness. A rather shy audience nevertheless offered half a dozen snippets from their lives that then were translated by the actors into vignettes of movement, spoken word, and song that at times moved us to tears—not tears of sadness but of vibrant life and hope. The experience encapsulated how “support” can weave individuals into the thriving embrace of a life-affirming collective.
And who couldn’t use a little music or an art exhibit? Vassar Brothers Medical Center in Poughkeepsie has weekly live musical performances by the Botticelli Chamber Players in the two-story, light-filled lobby of the Dyson Center for Cancer Care. “They are close enough to the inpatient area and to the radiation treatment rooms that everybody can hear them,” says Amy Wallace, public relations assistant at Vassar Brothers. “It fills the whole space. Sometimes a singer will join them.” The Hudson Valley nonprofit Miles of Hope, founded in 2003 to provide services for women and families affected by breast cancer, sponsors those events.
The Dyson Center is also adorned with artwork that changes monthly. “Patients absolutely love it. Because their treatments often go on for weeks, at four to five times a week, they look forward to seeing who the next artist is. We always have local artists who want to contribute to the community, and we encourage cancer survivors to do a show, even if they aren’t professional artists.” Not only patients but also their families and staff have come to adore these enrichments at the center.
Breast Cancer Options
Breast cancer impacts millions of people across the nation, and unfortunately, rates are unusually high in our region. The good news is that we’ve got Breast Cancer Options, a grassroots organization that serves the area. It’s exemplary in what can be done, not just to assist those dealing with cancer but in advocating for health care improvements, treatment options, and cancer prevention
—something lacking from many other cancer awareness campaigns. The organizations offer:
• Companion/Advocates: Cancer survivors trained to accompany patients to medical appointments for both emotional and practical support.
• Support groups: Nearly a dozen peer-facilitated groups spread across Columbia, Dutchess, Greene, Sullivan, and Ulster counties.
• Complementary medicine conference: Annual public conference (in spring) hosting experts in complementary medicine to speak and lead workshops on such topics as boosting immune function, recovering from chemotherapy and radiation, lowering risk of environmental contamination, and improving quality of life.
• Healthy lifestyle support series: Workshops offering practical ways to make small and easy changes in daily life for optimum health, such as diet, exercise, and stress reduction.
• A free “Healthy Lifestyles” calendar brimming with the latest on nutrition, environmental links to cancer, detox methods, and more.
• E-mail news: Thrice-weekly e-mail newsletter with the latest on clinical trials, complementary and new treatments, lifestyle choices, and more.
Bounty of resources
Thomson’s book lists many more resources that span whatever degree of information gathering and support you are ready for. There are dozens of books, websites, audiotapes, videos, support groups, retreats, and organizations covering a diversity of topics. Some are about cancer in specific and practical ways; others address empowerment, spirituality, love, personal transformation, and other health-supportive dimensions. A sampling of some unique ones:
• The Cancer Survival Toolbox: A free audio program (also available in print) from the National Coalition for Cancer Survivorship that teaches patients basic “skills” for collecting information, communicating, making decisions, negotiating, standing up for their rights, financial issues, aiding the caregiver, and more.
• Bedside murals: Gorgeous bedside murals of natural settings with accompanying nature sounds, which have been documented in medical studies to promote deep relaxation and healing.
• Positive Pause: Online inspirational slide show with music and text for stress relief and meditation.
• Silent Unity: Offering prayers at your request, online, or by phone.
• The Corporate Angel Network: Arranges free seating on corporate jets for cancer patients traveling to treatments.
To find services locally, besides those mentioned here, call a hospital directly or call the American Cancer Society (ACS). Paul McGee, spokesperson for our region’s ACS chapters, encourages anyone seeking help to call the 24-hour, 365-days-a-year hotline (in English and Spanish). You’ll find contact numbers for local ACS chapters and activities, but also news about research and treatments.
An important focus of the ACS is its Community Resources Database, a compilation of local support services offered by the ACS, government agencies, nonprofits, or other groups. Further, says McGee, “Our mission is to provide not just information, but to reach out to help newly diagnosed people and their families navigate through the cancer journey.” An example is a cancer screening and treatment program passed into New York state law (for which the ACS fought). “If someone knows they need to get screened for breast cancer but doesn’t have insurance or can’t afford it, we can work with local services like the Ulster County Health Living Partnership to link women with a free screening,” adds McGee. “If she is then diagnosed with cancer, treatment will be covered by Medicaid.” Such state-supported programs exist for colon and cervical cancer as well.
It’s your body
Thomson reminds you often in her book: It’s your body, and you have the right to choose your own treatment and professional team. But it can be intimidating to stand up to whatever the doctor says. She found herself accepting what she was told at first, and then began to step back and consider her options. Even understanding what’s said can be daunting, so it can be immensely helpful to have someone who’s had cancer go with you to appointments. Thomson concurs with Barbara Sarah, who says that as a patient, “you don’t hear a lot of what’s being said. It’s like a glass window goes up, and you’re watching and listening, but you don’t really get it.” That’s one reason Sarah created Third Opinion, a consultation service to aid cancer patients and families grapple with the details of the illness, including going to appointments. “People with a background in cancer bring a different perspective than family, who often are very emotionally involved,” she says. “And not everybody has someone to go with them.”
Thomson and Sarah also advocate for integrative oncology, which “combines conventional medicine with other ways of helping people heal,” Sarah explains. “My mission is to help make that happen for patients and the community as a whole—to see treatment not just as chemotherapy, radiation, and surgery, but also to include naturopathy, acupuncture, massage, guided imagery, and herbs and supplements where there is evidence-based research for them.” Thomson points out that patients, as they educate themselves about integrative oncology and ask for it, spread much-needed information. Mainstream doctors learn of complementary strategies, and, conversely, holistic practitioners learn the latest conventional treatments.
Creating your future
There is another need of cancer patients: support after treatment. Sarah explains: “Your treatment may last four months—but then what? How do you find a way of continuing, living with uncertainty, worrying if that pain in your hip is metastatic cancer, for instance? Too much of what happens is that people ‘graduate’ from the medical system, and now what? I believe people need a philosophy to move forward with their lives. It helps to have a purpose, living every day—use the time you have as meaningfully as possible.”
Thomson agrees, lamenting that patients are cleared by doctors to get on with their lives without any suggestions for them and families about how to do so after the life-altering experience. She lauds the National Coalition for Cancer Survivorship for their guidance, and helps readers with some ideas for creating their own “wellness programs.” But the survivorship phase deserves much more attention, she says. Perhaps that will be for Thomson’s next book.
After Shock: From Cancer Diagnosis to Healing
by Puja Thomson. www.aftershockfromcancer.com
; (845) 255-2278
American Cancer Society
24-hour hotline (800) 227-2345
Breast Cancer Options
(845) 339-HOPE; www.breastcanceroptions.org
Cancer Survival Toolbox
(301) 650-9127; www.cancersurvivaltoolbox.org
Corporate Angel Network
(866) 328-1313; www.corpangelnetwork.org
Healing Environment International
(800) BEDSIDE; www.bedscapes.com
Miles of Hope Breast Cancer Foundation
(845) 264-2005; www.milesofhopebcf.org
National Coalition for Cancer Survivorship
(301) 650-9127; www.canceradvocacy.org
Positive Pause www.positivepause.com
Roots & Wings: Guided Imagery and Meditations to Transform Your Life
CD or cassette by Puja Thomson,
music by Richard Shulman; www.rootsnwings.com
Silent Unity Prayers www.unityworldhq.org
; (816) 969-2000
exercise with Ujjala Schwartz (845) 334-3082
Barbara Sarah (845) 532-3336