While I was caring for my sister and writing Marrow: A Love Story I became an amateur researcher in cancer and cancer care. I don’t consider myself a medical expert or a cancer coach but here are some resources and websites that can help if you or a loved one is need of information or guidance.
BONE MARROW TRANSPLANT INFORMATION
For the thousands of people diagnosed every year with life-threatening blood cancers like leukemia and lymphoma, bone marrow/stem cell transplant offers hope and healing. You can find information about being the recipient of a transplant or being a donor (you can donate even if you aren’t a family member and have your cells frozen, typed, and listed on the National Morrow Donor Registry) at Be the Match which is operated by the National Marrow Donor Program which manages the largest and most diverse marrow registry in the world.
SUPPORT, COACHING AND HEALING OPTIONS
- Commonweal's Cancer Help Program is the most extensive, trustworthy site for all kinds of support and alternative and complementary cancer care. Commonweal is also a healing center that offers retreats and workshops.
- Melissa's Healing Hope. Melissa is a cancer survivor and a compassionate coach who offers insight and support for those going through all sorts of transitions and challenges, including breast cancer and other cancers. Her resource page is a curated goldmine for all sorts of issues cancer patients face.
- Kriss Carr's Crazy, Sexy, Healthy is a lively and helpful website offering dietary wisdom and lifestyle changes. Kris is a cancer survivor, author, healer, and teacher.
- Radical Remission Course. Dr. Kelly Turner teaches nine healing actions you can take to speed the healing process through diet, emotional healing, spiritual practice, and other kinds of support.
GENERAL CANCER INFORMATION
- City of Hope Cancer Center is an innovative biomedical research, treatment and educational institution. Located near Los Angeles, California, City of Hope is dedicated to the prevention and cure of cancer, HIV/AIDS, diabetes, and other life-threatening diseases.
- Empowering Young Survivors programs connect, educate and support young women affected by breast cancer.
- A gateway to the Guide to Internet Resources for Cancer family of Web sites, established 1996, now with over a thousand pages. It is maintained on a voluntary/ not-for-profit basis.
- The OncoLink site informs patients on how cancer is diagnosed and treated, and also answers important questions on understanding nutritional needs during treatment and recovery. The 10 top cancer sites, treatment centers, books for the newly diagnosed patients and information on patient’s rights are also covered in this informative site. Tools provided for understanding prognosis and statistics are very helpful.
- The Cancer Pain site is devoted to the management of pain due to cancer (and other causes) and its treatment, utilizing state-of-the-art interventions.
- The National Comprehensive Cancer Network (NCCN), an alliance of 19 of the world’s leading cancer centers, is an authoritative source of information to help patients and health professionals make informed decisions about cancer care. Through the collective expertise of its member institutions, the NCCN develops, updates, and disseminates a complete library of clinical practice guidelines. Treatment guidelines are offered in English and Spanish. Information on pediatric cancer is also available.
- The patient information website of the American Society of Clinical Oncology (ASCO), provides oncologist-approved information on more than 50 types of cancer and their treatments, clinical trials, coping, and side effects. Additional resources include a Find an Oncologist database, drug information resources, and links to patient support organizations. The site is designed to help people with cancer make informed heath care decisions.
- CanCare is a network of trained volunteers including cancer survivors, family members of cancer survivors and medical professionals who provide emotional support to others facing cancer.
Offering support or caring for friends and family members when they are ill can be a confusing task. Here are some things I learned while caring for my sister.
FOUR WAYS TO HELP A LOVED ONE WHO IS SICK OR SUFFERING
1. Before you visit or speak with a friend in need, get in touch with your vein of authenticity, your marrow, your soul, or whatever you call the truest part of yourself. Sit in the still dignity of your authentic self. Get comfortable in your own skin, because when one person is comfortable, it’s more likely that pretense and awkwardness will disappear for both people. What you say is more helpful when it comes from your soul, and most of the time, words aren’t even necessary.
2. See if you can put aside fear and instead arrive with the gift of courage. Not words of courage, but rather your quiet inner strength. Fill your whole being with it. Then commit to finding the seed of strength within your friend. Meet in a field of shared and respectful humanness, strength-to-strength. You can repeat that phrase to yourself if you lose courage in the midst of helping: strength-to-strength.
3. Resist the urge to be a healer, teacher, or therapist. You don’t need to prepare or have the “perfect” thing to say, or do, or offer. Most of the time, people do not want to hear about alternatives to the care they are receiving. If they ask you, of course, share what you know, or do the research they need, or make important connections for them. But first make sure that is what they want from you.
4. Respect the person who is suffering. If he says he is scared, don’t tell him to be brave. Instead, ask him to tell you about it. Listen with empathy. Just listen. Just be there. If she says she is dying, don’t change the subject. Go there with her. Find out what she’s feeling, what she needs. Be a vessel for her dreams and fears and plans. Don’t preach and don’t shrink back. Be real. Be open. As Albert Camus said, Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.
HOW TO EMOTIONALLY PREPARE FOR SURGERY -by Melissa Eppard
Recently a friend asked me, “How do you prepare emotionally for surgery?”
This is a great question. There is so much you can do. Most importantly, finding the people, practices, activities and rituals that speak to you, that give you grounding and meaning is the place to start. Here are some things that helped me prepare for my double mastectomy after being diagnosed with breast cancer at the age of 36.
- Take photos. You could schedule a photo shoot or have someone close to you take a few pictures. My before pictures were just for me, a way to remember what my breasts looked like before the double mastectomy. There is so much feeling in my face and eyes.
- Write and write and write and write. This was a huge tool of processing what was happening to me. Try writing a love letter to your afflicted body part. Try writing a letter from the perspective of your body part. I wrote a dialogue one time where I was having a conversation with my breasts. It was intense, but opened up a well of feeling that needed to come up to the surface. Then there is this blog. Writing my blog served two purposes initially. It was a lifeline to my family and friends, so they could stay informed about what was happening with me, and afforded me a privacy buffer. It also served as a pressure release valve and way of helping my mind assimilate what was happening. I wouldn’t just write a blog post and be done. I would write it and read it over and over a dozen times. Each time I read it, a layer of stress and pain would discharge, would soften and release, little by little.
- Let it OUT! Break sticks, throw rocks into a stream or river, scream into a pillow, cry until you are red and snotty. My default mode is to get busy, to get into problem solving mode. This is helpful to a degree, but is also a very clever way to avoid dealing with your feelings. Make time for these feelings to come up, knowing you won’t get lost in the void. I once described to a friend my fear of falling down the rabbit hole of emotion, that I would never be able to get back out. I promise you will not get lost. You will find yourself. As an added bonus, after a good cry, there is the temporary endorphin rush, a calm euphoria that will settle around you.
- Have a small party, ceremony or ritual. The night before my first surgery, I gathered with a few of my closest girlfriends for a “Farewell to Nursies” party. (My little boy had affectionately named my breasts, “Nursies” when he was a baby.) We shared a potluck, and everyone wrote their good thoughts, prayers and wishes for me on beautiful little squares of colored paper. I brought them with me to the hospital and had them to read again later while healing from surgery and going through chemo. My girlfriends made a gorgeous healing totem for me, by attaching beautiful stones, crystals and trinkets onto an embroidered belt. I hung this in my bedroom so I could see it while resting and healing after the surgery. My favorite part was when my girlfriends surrounded me, put their hands on me, gently rubbed my head and arms, held my hands. They prayed around me quietly, infusing all their love and good intentions for a successful surgery and held a vision of my ultimate healing.
- Simplify your life. Be kind to yourself and take time. You know that saying, “One step forward, two steps back”? If you rush the healing process, you are only going to make things harder. If you have ever prepared for childbirth, think about the way that you insulated your life, slowed down and made time for a “babymoon” period. Your healing is going to be like this. It is nice to have a vague idea that in 2 weeks or 6 weeks or 3 months, you’ll be back to doing x, y, and z. But stay present to now. Now is not the time to be leaning forward, putting unrealistic expectations on yourself. You will not be the same, but there will be a new normal, and that will change as time goes on. Start now to make way for this quieter time, allow yourself to rest and prepare for your best possible healing.
Melissa Eppard lives in the beautiful Hudson Valley, NY area with her young son and husband. After overcoming breast cancer in her mid-30's, she knows that nothing is guaranteed in life. As a Personal Life Coach she has made it her mission to ignite the spark of purposeful living and creative fire in everyone she meets. She blogged intimately about her healing journey at www.MelissasHealingHope.com and you can learn about her coaching work at www.MelissaEppardCoaching.com