Archive for counseling & education

got Cancer? meet CancerCare

Follow-up_-_Phone__Web_Logo

 

Despite the fact that CancerCare is a national organization providing free support services to anyone affected by cancer in the US and Puerto Rico, not everyone knows about them or about the amazing assistance they offer.  Candidly, I wish I had known about them when we were battling my husband’s cancer.

CancerCare literally helps anyone touched by cancer, and I mean A-N-Y-O-N-E -patients, caregivers, survivors, family and even friends.   Services include free individual counseling, free support groups, free resource referrals, free meals, financial assistance and even the ability to connect with leading cancer experts.

 

FREE Counseling Services

CancerCare‘s free counseling is available over the telephone, online or in person. All support groups are led by masters level oncology social workers and allow participants to connect and identify with others in similar situations.

  • In-person groups are held at CancerCare offices in New York City, Long Island, New Jersey and Connecticut. If people don’t live in these areas, CancerCare will help them find face-to-face support groups in their community.
  • Password-protected online support groups can be accessed 24 hours a day, seven days a week.
  • Telephone support groups connect people with others from across the country who share similar concerns. Regularly scheduled, one-hour sessions take place over six weeks.

To learn more about CancerCare‘s support groups or to register for one, visit www.cancercare.org/support_groups or call 800-813-hope (4673).

 

Connect with a Leading Oncology Expert

CancerCare Connect Education Workshops share the latest information from leading oncology experts. Like all of CancerCare’s services, these one-hour workshops are completely free of charge.  Registrants can listen in live over the phone or online as a webcast.  Topics range from latest advances in specific cancer types to understanding the Affordable Care Act to practical advice for caregivers and so much more.

To see the upcoming schedule of workshops, click HERE.  To listen to past workshops, click HERE.

 

Financial Assistance

In addition to the emotional stress and anxiety that a diagnosis of cancer brings, the financial implications can become burdensome.  Co-pays for chemotherapy, RXs, tests and office visits as well as OTC meds add up quickly.  Other cancer-related costs include travel expenses like gas and parking fees at doctor’s offices; paying for childcare coverage during treatments; the list goes on and on.  Some people even have to stop working during their treatment or the treatment of their child.  Out-of-pocket expenses can put people into debt or make it nearly impossible for them to follow or complete their cancer treatment plan.

CancerCare offers financial assistance for cancer-related costs such as:

  • Transportation to and from cancer treatment
  • Home care
  • Child care
  • Pain medications
  • Lymphedema supplies (breast cancer only)

Check the CancerCare website for specific requirements and grants.  Please note:  If CancerCare does not currently have funding to assist your specific situation, their professional oncology social workers will work to refer you to other financial assistance resources. 

Also check out the CancerCare Co-Payment Assistance Foundation which helps people afford co-payments for chemotherapy and targeted treatment drugs.  To learn more, visit www.cancercarecopay.org.

Meal Assistance

CancerCare partners with Magnolia Meals at Home™, a meal delivery program that helps patients by providing nourishing meals to households affected by breast cancer so that loved ones can spend more quality time together.  This program is currently available in and around Woodcliff Lake, NJ, Andover, MA and Raleigh-Durham, NC as well as areas in New York, New Hampshire and Boston, MA. Eligible participants will receive up to two months of home meal deliveries, each of which will include ten meals and up to ten additional meals for their family members, if requested by the participant.  Visit the Magnolia Meals at Home website for more information.

 

The bottomline:  CancerCare social workers are well trained and experienced in helping patients and their families find the resources and support they need to cope with cancer… free of charge.  So if you or a loved one has been diagnosed with cancer, connect with CancerCare… they can offer help and hope.  

MORE Books for Children & Families Living with Cancer

books

I am amazed how many books have been written to help families deal with a diagnosis of cancer.  Below is yet another post on helpful books written by Bonnie Coberly, Certified Health Counselor (CHC) at Natural Horizons Wellness Centers. Bonnie helps individuals to reach their wellness goals through smart and healthy dietary choices. You can follow Bonnie Coberly on Google+.  

 

It’s a well-known fact that if you have a book and a lap, most children will expect you to read them a story. While reading is usually said to be a calm and joyful experience, topics like cancer may not seem to follow that same thread.

Here are some suggestions of books for children and families living with cancer that prove to not only be helpful, but can also be entertaining and uplifting.

*Note: All of the following books can be found on Amazon.com.

Children’s Books:

The Boy of Steel: A Baseball Dream Come True by Ray Negron – “Young Michael Steel loves to watch the New York Yankees on TV—from his hospital bed. Michael has brain cancer. But when Yankee second baseman Robinson Cano visits Michael in the hospital, Michael embarks on an unexpected and wonderful journey when he becomes a Yankee batboy for a day. It’s his baseball dream come true!”

When Someone You Love Has Cancer: A Guide to Help Kids Cope by Alaric Lewis

Taking Cancer to School (Special Kids in School Series) by Kim Gosselin – A great book for cancer patients who are school-aged to take back to school with them or have their teacher read to their classmates. Provides learning for classmates and encourages empathy and understanding.

H is for Hair Fairy: An Alphabet of Encouragement and Insight for Kids (and Kids at Heart!) with Cancer by Kim Martin – “An alphabet book with a mission, this 32-page picture book will inspire, comfort, educate and encourage children being treated for cancer. Using colorful, warm, humorous illustrations and verse, the author employs the alphabet to feature different aspects of coping with cancer treatment.”

Imagine a Rainbow: A Child’s Guide for Soothing Pain by Brenda Miles – “Through a series of beautiful illustrations that engage all of the senses, each accompanied by a verse couplet, this book asks the child to imagine several things to cope with pain. Some are calming, some are delighting, some are empowering, some are inspirational.”

Mom Has Cancer! (Let’s Talk about It) by Jennifer Moore-Mallinos – “This sensitively written book encourages preschool-age and early-grades children to explore the possibilities of a parent with cancer.”

The Famous Hat by Kate Gaynor – “This book has been designed to help children with leukemia (or other forms of cancer) to prepare for treatment, namely chemotherapy, and a stay in hospital. Treatment for childhood cancer can be very difficult to cope with, especially for very young children. The lengthy stay in hospital, having to contend with drips, tubes and injections is difficult enough without the possibility of hair loss for children to face. However, this book helps children to see the experience of a child that they can easily relate to.”

For Parents:

When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham – “When A Parent Has Cancer is a book for families written from the heart of experience. A mother, physician, and cancer survivor, Dr. Wendy Harpham offers clear, direct, and sympathetic advice for parents challenged with the task of raising normal, healthy children while they struggle with a potentially life–threatening disease.”

What Is Cancer Anyway?: Explaining Cancer to Children of All Ages by Karen Carney – “What IS Cancer, Anyway? Explaining Cancer to Children of All Ages is one of the books in the Barklay and Eve Children’s Book Series. This book provides basic information that is essential when someone in the family has cancer and does so in a calm, clear, reassuring manner that children and adults will appreciate.”

Cancer in the Family: Helping Children Cope with a Parent’s Illness by Sue Heiney, Joan Hermann, Katherine Bruss and Joy Fincannon – “Outlining valuable steps necessary to help children understand what happens when a parent has been diagnosed with cancer, this guide provides “hands-on-tools” to help those affected by cancer—as well as their loved ones—face many of the dilemmas that come with the disease.”

For Siblings:

What about Me?: When Brothers and Sisters Get Sick by Allan Peterkin – “A young girl attempts to cope with her brother’s being ill.”

Authored by Cancer Patients:

Chemo Girl: Saving the World One Treatment at a Time by Christina Richmond – “Chemo Girl is the fictional tale of a superhero created by Christina Richmond, who was diagnosed with Rhabdomyosarcoma, a rare type of muscle cancer, when she was in the seventh grade.”

I’m A Superhero by Daxton Wilde – “I’m A Superhero reaches beyond borders and cultures, helping children and their families to be brave, helping parents explain cancer to their young children, and helping families cope with one of life’s most difficult situations through love and humor.”

Do you have any cancer related books that you have found helpful for your family or children?  If so, please share them with us.  Knowledge is power…. let’s share the power!

 

Books Written For Children When an Adult Family Member Has Cancer

books

I recently came across a helpful list of books written to help children when an adult family member has cancer.  This list was compiled by the Children & Family Program team of The Gathering Place, a non-profit, community-based cancer support center that offers a wide variety of FREE programs for anyone touched by cancer living in Ohio.  

Below are a some of the books they suggest for families with younger children along with a brief description of each book.   Thank you The Gathering Place!

If you know of a fantastic book that was not listed below, please post the information below in the comments section or email me at Robyn@CancerHAWK.com.  Knowledge is power…. please share the power!

 

 

Our Mom Has Cancer, Abigail and Adrienne Ackerman, American Cancer Society, 800/227- 2345, $8.95. Written by two children whose mother is diagnosed with breast cancer. They discuss their reactions to surgery, chemotherapy, and radiation. The illustrations are simple children’s drawings, but capture the emotion of the ups and downs of treatment. This book is hopeful but honest, and is more focused on feelings associated with treatment rather than what treatments are and why they happen.

In Mommy’s Garden, Neyal Ammary, Canyon Beach Visual Communications, 2007, OOP*. A mother uses the idea of a garden to explain cancer to her daughter. Cancer is described as weeds. The mother discusses how chemicals and digging the weeds out can kill this plant. She also says that the chemicals used can affect the petals of the flowers. Terms like chemotherapy, operation, and hair loss are not used. This book would be ideal for a parent to read along with their child to explain the meaning of the metaphors. Strengths of this book include the illustrations of people being drawn with blank faces in order for the readers to decide how they think the individual is feeling. Because of the metaphor this book uses and the simple pictures and language, young school-age children would most benefit from being read the story.

The Dandelion Seed, Joseph Anthony, DAWN Publications, 1997, $7.95. This book is the story of a dandelion seed that fears letting go of the flower. When the wind blows it free the seed learns that the world can be scary, lonely, and beautiful. Once it reaches its new home, it blooms into the dandelion it was meant to be that then spreads its seeds. This book is a beautiful metaphor for those looking to know that in a journey that is scary and lonely a positive ending can await.

Lance Armstrong: The Race of His Life, Kristin Armstrong, Grosset & Dunlap, 2000, $3.99. Children experiencing cancer may want to know of others that have also experienced the disease, including celebrities. This hopeful Level 3 reading book gives the story of bicyclist Lance Armstrong and how he has overcome challenges throughout his life, including beating cancer.

The Paper Chain, Claire Blake, Eliza Blanchard & Kathy Parkinson, Health Press, 1998, (1- 800-643-2665), $8.95. An excellent book for young children, from late pre-school through school-age, which presents a standard range of events that occur when a mother has cancer. Surgery, hospitalization, chemotherapy and radiation are all discussed. Language level and illustrations are very good; the only disadvantage of this book is that it may present too much information for the younger children, especially since children may be exposed to material which may not be part of their family’s cancer experience

Good Luck, Mrs. K.! Louise Borden, Aladdin Paperbacks, 2002, $6.99. A story for mid-school- age children about a teacher with cancer, this book fills a gap in the literature. The illustrations and text are well done, and would be helpful to a child whose loved teacher had to leave school because of cancer. This book has a positive ending as the teacher does make a return the next year.

Can I Catch Cancer?, Brittany’s Books Publishing, 2007, $7.95. An attempt to teach the meanings of words such as cells, cancer, malignant, and chemotherapy, using colors, simple concepts, and cute language. This book is visually geared for very young children, but the text would be too difficult for these ages. Older children may be offended by the childishness of the art.

Grandma Kathy Has Cancer, Colleen Buckley, Dog Ear Publishing, 2007, $11.50. The real life situations presented in this book of a granddaughter and grandmother can help children to understand how cancer can physically affect someone while the individual herself does not change. With emphasis in how the grandchild and grandmother support each other throughout the ups and downs of cancer treatment, this simple and direct story is told through a child’s voice alongside cheerful, full-color illustrations.

What Is Cancer Anyway: Explaining Cancer to Children Of All Ages, Karen Carney, Dragonfly Publications, 1998, $7.95. A book in the Barklay and Eve series. Coloring book format, with lots of information on cancer, radiation and chemotherapy. Addresses cancer in a grandparent. Less focus on questions children might have, but emphasis on all cancers being different and the importance of asking questions. While, the text is appropriate for school-age children they might be offended by the childishness of the main characters being dogs.

When the Boys Ran the House, Joan Carris, Lippincott, 1982, OOP*. Tells the story of four young children who take on household responsibilities while their mother is sick and father is away. Cute, rather silly, for young to middle school-agers. It does address some of the issues children face when a parent is unable to fill normal roles.

Our Family Has Cancer, Too, Christine Clifford, Pfeifer-Hamilton Publishers, 1998, $6.95. Using cartoon characters, this book is for the 7-12 year old who is dealing with family cancer. The story presents a family in which the mom is diagnosed with cancer and her two sons learn about hospitalization, chemotherapy, radiation, and what changes there will be in their lives. There are good suggestions for adults to help children understand the material.

Someone I Really Love Has Cancer, Dana Cohn and L.E.Murray, self-published, copies available from 203/226-9165, 1999, OOP*. As one of the few books developed for younger children, this book has simple line drawings of animated figures and deals with the changes in a person from cancer and chemotherapy. Common questions that children have are also presented. The father is the person with cancer in this book. It is available in both Spanish and English.

My Mommy Has Breast Cancer, But She Is OK!, Kerri M. Conner, Xylophone Press, 2010. This book is about a girl named Maddie and her relationship with her mother as her mother gets treatment for breast cancer. It addresses her feelings towards her mother’s physical and emotional changes such as the way she spends times with her mother, shows her affection towards her, and the differences in her daily routine. These changes are addressed to Maddie by comparing her mother’s changes to that of a butterfly with constant confirmation that things are different and difficult but okay. The story is unique in that it features African-American characters and shows a return to normalcy in a mother one year after treatment.

Let My Colors Out, Courtney Filigenzi, American Cancer Society, 2009, $11.95. This board book tells the story of a young boy who uses color to express his many different emotions as his mother undergoes cancer treatment. As his feelings range from sad to happy to angry, the boy realizes that it’s okay to go through a range of feelings and that it is important to let them out. This book is ideal for children ages 2-5.

Tickles Tabitha’s Cancer-Tankerous Mommy, Amelia Frahm, Nutcracker Publishing Company, 2001, $9.95. A great, silly little book that handles young children’s emotional reactions to a parent with cancer very well. The only treatment mentioned is “medicine” and most of the book focuses on hair loss, changes in mother’s energy, and children’s struggles with family changes.

Just the Facts: Cancer, Oliver Gillie, Heinemann Library, 2004. This is a comprehensive and straight-forward guide to cancer that gives an overview of the disease through a description of what it is, its various forms, how people live with it, and treatment options. Personal stories from cancer survivors are throughout the book. Full color photographs accompany the text. Appropriate for older school-age children to teens.

The Valentine’s Day Gift, Allison Grace, Chagrin River Publishing, 2005. A first person account of a school-age girl’s experience with her mother’s breast cancer. It is a very positive upbeat story, but fairly specific to the experiences of this one child. She does talk about her feelings, and what helps her cope, and gives some information on cancer itself. The book is mostly text, with minimal illustrations.

You are Not Alone: Families Touched by Cancer, Eva Grayzel, self published, 2010. An easy to read book featuring a collection of stories from children all over the world who explain what they do to cope with cancer in parents, siblings, relatives, and themselves. In addition to giving suggestions of ways to help deal with feelings, this book may give a child comfort in feeling that they are not alone in having to adapt to the changes that are happening in their family because of cancer.

Becky and the Worry Cup, Wendy S. Harpham, Harper Collins Publishers, 1997. This highly recommended 48 page chapter book for ages 7-10 tells the story of a girl named Becky and how she and her family cope with her mother’s lymphoma diagnosis, chemotherapy and its side effects, cancer recurrence, radiation, and adjusting to their “new normal.” Highlights of this book include multiple examples of realistic situations that may cause a child to be worried, embarrassed, afraid or angry and the many different ways that a child can cope with them. In addition, the book also uniquely addresses why, even when a parent is in remission, it helps families to not forget about the cancer. The book ends with the positive message that although lemonade cannot always be made out of lemons, it is important to try and appreciate the positives in life. When a Parent Has Cancer: A Guide To Caring For Your Children is the parent accompaniment to this book that explains how to address many of the issues presented in Becky & the Worry Cup.

Nana, What’s Cancer?, Beverlye Hyman Fead and Tessa Mae Hamermesh, American Cancer Society, 2010, $14.95. This comprehensive book gives a thorough explanation of the medical and emotional aspects of cancer. Designed for school-age children, it is separated into chapters that focus on typical concerns of this age group including whether cancer can be caught, why some cancers are worse than others, whether anyone can get it, and what can be done to prevent cancer. The information given is designed to be both comforting and honest to the reader.

Sammy’s Mommy Has Cancer, Sherry Kohlenberg, Magination Press, 1993, $9.95. A simple story with nice illustrations about a mother with cancer. Appropriate for younger children, but does cover issues of surgery, chemotherapy, hair loss, and return to wellness.

When A Parent is Very Sick, Edna LeShan, Atlantic Monthly, 1986, OOP*. Written for older school-ager or young teen, this book identifies the many responses a child might have to a parent’s illness, hospitalization, or death. Special focus is given to living with a chronically ill parent and to mental health problems.

When Someone You Love Has Cancer: A Guide to Help Kids Cope, Alaric Lewis, Abbey Press, 2005, $7.95. A series of specific statements about the impact of cancer, with illustrations for each concept like “It’s O.K. to be mad,” “Talking helps,” and “Sometimes people don’t get better.” Each page can be read separately, and the illustrations are younger than the narrative. A good tool for parents who want to chose their own points of emphasis, although younger children would have a hard time skipping specific pages.

The Rainbow Feelings of Cancer: A Book for Children Who Have a Loved One with Cancer, Carrie and Chia Martin, Hohm Press, 2001. A ten year old girl tells about the many feelings that she has concerning her mother’s cancer. Her drawings accompany the text.

Someone I Love is Sick, Kathleen McCue, The Gathering Place Press, 2009, $21.95. This is a customizable book to use when talking with children ages 2-6 years old when a parent or grandparent has cancer. Pages can be selected to address the family’s specific situation including diagnosis, treatment, hospitalization, recurrence and, if need be, end of life. It can be used by both families and health care professionals to provide educational information and recognize emotional responses to cancer.

Butterfly Kisses and Wishes on Wings: When Someone You Love has Cancer . . . A Hopeful, Helpful Book for Kids, Ellen McVicker, self-published, 2006, $16.95. In this well- written story of a boy whose mother has cancer, a clear and honest explanation is given of the disease that is helpfully accompanied by drawings of cells. Surgery, radiation, and chemotherapy are each explained. The book discusses the emotions and questions a child may have and emphasizes what a child can do to help themselves and others when a loved one has cancer. This book also has its own website, butterflykissesbook.com, that has further resources to help a child cope.

Chemo Cat, Cathy Nilon, Ravenna Press, 2007, $9.95. A story about a cat family in which the mother is diagnosed and treated for breast cancer. The story’s simple language can provide a starting point to discuss chemotherapy, changes in physical appearance, and changes in the home. Common questions children ask are addressed as well as some of the emotions they may feel such as sadness, anger, jealousy, and embarrassment. The book ends on a positive note reflecting on the strengths of the family that have helped them cope with cancer.

The Hope Tree: Kids Talk About Breast Cancer, Laura Numeroff and Wendy Harpham, Simon & Schuster, 1999, OOP*. This book uses animal illustrations to familiarize children with some of the significant stress points when a mother has breast cancer. Issues such as reactions to diagnosis, understanding changes, family meetings, dealing with feelings, positive attitudes, etc., are addressed in this book through children’s personal stories. This book makes it easy to pick and choose information relevant to the situation of a family. NOTE: This same book is also published as Kids Talk by Samsung Telecommunications and Sprint PCS, 1999, OOP*. The content is identical.

When Bad Things Happen: A Guide to Help Kids Cope, Ted O’Neal, Abbey Press, 2003, $7.95. This book is a series of specific questions and concerns that children can have when bad things happen as well as suggestions for coping. Examples include “However you feel is okay,” “Why?,” and “Try to forgive.” Illustrations are younger than the narrative. God is mentioned throughout the book as a source of support. Each page can be read separately with the illustrations being younger than the narrative. This is a good tool for parents who want to choose their own points of emphasis, although younger children may have a hard time skipping specific pages.

My Mommy Has Cancer, Carolyn Parkinson, Park Press, 1991. A short book for younger children about a boy, Eric, whose mother has cancer. Cells in the body are described as bubbles, and cancer is presented as bad bubbles. Chemotherapy is explained. There is some focus on the sadness the entire family feels, although the books presents hope for the future.

Mommy’s In The Hospital Again, Carolyn Parkinson, Solace Publishing, 1994. Great illustrations of a young boy dealing with his mother’s cancer. The child is kindergarten age, but much of the language of this book is for somewhat older children. It does deal with a sudden hospitalization and the honest fears and reactions of a young child.

A New Hat for Mommy: Helping Children Express Their Concerns on Cancer, Hannah Grace Perry, BookSurge, 2005, $10.99. A story of a nine year old girl named Lucy as she experiences her mother having cancer treatment. It explains the meaning of cancer, as well as what happens during hospitalizations and surgery. Questions to ask children about what Lucy and her family are experiencing are included throughout the book. This book is a good resource to start a conversation with children about their feelings and to help them feel that they are not alone. As the book is written with a lot of text in a simple style that discusses both complex issues and Lucy’s talking toy cat, it would be ideal for a parent to read to a young child while summarizing its content. It may also be appreciated by older school-age children looking for explanations about cancer, its treatment, and the feelings associated with it.

Daddy Kat gets a Brain Tumor, Melinda Rector, Lulu.com, 2007, $18.20. This book is the story of a cat who shares her reactions to her father’s brain tumor. The story ends with the father going to hospice and dying from his cancer. Children may find the story difficult to follow. The story’s references to a cat’s multiple lives may not serve to give a clear explanation of death.

When Mommy Had a Mastectomy, Nancy Reuben Greenfield, Bartleby Press, 2005, $14.95. This well-written book addresses the special connection that a child can have with her mother’s breasts and the difficulty she can have in learning about the cancer and need for the breasts to be removed. It also follows the child’s role and feelings as her mother has the surgery and experiences the lengthy waiting period of recovery. This story is an excellent choice to prepare a child for a loved one’s mastectomy and open up conversation.

When Mama Wore A Hat, Eleanor Schick, Wyeth, 2007, *W. This is a well-written book about two children that have a mother with cancer. The book gives a great deal of attention to the topic of chemotherapy treatment and common concerns and emotions a child has when a parent has cancer. It ends on a positive note with the mother feeling better after her treatments have been completed. This is one of the few stories in which the parent is single.

When Mommy Is Sick, Ferne Sherkin-Langer, Albert Whitman and Company, 1995, OOP*. Although not specifically about cancer, this is a very good little book which addresses many of the concerns a child has when a mother is sick and is hospitalized. Great illustrations and language level for younger children, and could be safely used to address separation concerns and coping for children facing any type of parental illness.

Cancer & Kids, Rae Simons, AlphaHouse Publishing, 2009. This comprehensive book defines cancer, explains the different types, discusses its various causes and methods for diagnosis, and provides information on ways to protect oneself against cancer and help to find a cure. A real life story is also provided about a family experiencing childhood cancer.

The Year My Mother Was Bald, Ann Speltz, Magination Press, 2002 $9.95. Nicely written book for mid- or older-school age children when a mother has breast cancer. Quite specific to diagnosis, with lots of medical information. Does emphasize emotions, questions, and changes that occur for a child in this age group.

Max’s Daddy Goes to the Hospital, Danielle Steele, Delacorte Press, 1989. This book is the story of four year old Max and how he copes with his father’s hospitalization and injuries after he breaks his arm and leg while firefighting. Although this book does not focus on the topic of cancer, children may be able to relate to the emotions of Max and his mother when they find out his father is injured, Max’s feelings and questions about having to wait to visit his father in the hospital, the experience of Max first seeing his father injured and with an IV, and the wait for his father to recover.

Mom and the Polka-Dot Boo-Boo: A Gentle Story Explaining Breast Cancer to a Young Child, Eileen Sutherland, American Cancer Society, 2007. A very simple story that is ideal for young children in explaining breast cancer, “special medicine,” the feelings a parent might have, and return to wellness. Children’s drawings accompany the rhyming text.

Hair for Mama, Kelly A. Tinkham, The Penguin Group, 2007. This comforting and humorous book is about a boy whose mother has cancer. Because of her hair loss, she does not want to be in the family photo. Her son Marcus makes it his mission to find her hair so that she will be in the photo and wishfully, feel better. The story’s resolution of the boy talking to his mother about his feelings helps him to learn why hair loss occurs and address his underlying concerns for his mother. Full page watercolor pictures illustrate the story. It is one of the few picture books available that features an African-American family.

When Eric’s Mom Fought Cancer, Judith Vigna, Albert Whitman and Company, 1993, OOP*. The story of a young boy whose mother has breast cancer. Surgery and chemotherapy are addressed, and good examples of guilt and anger on the part of the child are provided. Daddy plays an important role in this book in supporting his son.

Where’s Mom’s Hair?: A Family’s Journey Through Cancer, Debbie Watters, Second Story Press, 2005, $12.95. This is a family’s story about a mother’s cancer, illustrated by actual photographs of the diagnosis, hair loss and chemotherapy. The text is simple and told from a child’s point of view, and the emphasis of this book is on hair loss and re-growth, with a sense of celebration for the end of treatment.

Mira’s Month, Deborah Weinstein-Stern, BMT Newsletter, 1994, (1-708-831-1913), OOP*. A simple story about a four-year old whose mother has cancer and has to be in the hospital for one month. Issues around missing mom, visiting the hospital and coping with separation are addressed, and there is a happy reunion in the end.

Promises, Elizabeth Winthrop, Clarion Books, 2000, $16.00. Good focus on emotions and reactions of a young child, especially anger and confusion. This book does not use the word “cancer,” but describes side effects of treatment, especially hair loss, and sudden hospital stays. Emphasis is on the disruption to a child’s life when mother is sick.

Once Upon A Hopeful Night, Risa Yaffe, Oncology Nursing Press, 1998, $7.00. This small book is the story of a mother’s cancer, told in poetic verse, with line-drawn illustrations which are fairly mature in their depiction of the experience of cancer. Good for school-age children.

Coping With Mesothelioma: A Support Group for this Rare Cancer

Pic1

Meet GUEST BLOGGER Faith Franz.  Faith is a writer for The Mesothelioma Center, an organization that provides support and resources for people and families with this rare disease.  Faith also likes to spread the word about the benefits of alternative medicine.

If you were diagnosed with lung cancer, you wouldn’t take chemotherapy drugs that treat leukemia. If there were malignant tumors on your kidney, you wouldn’t have surgery on your ovaries. So why, if you were diagnosed with malignant mesothelioma, should you settle for a support group that’s not designed specifically for mesothelioma patients?

Until recently, patients with this rare cancer have had few specialized care options – on both the medical and the emotional side of the spectrum. But as more research goes into this asbestos-related malignancy, doctors and social workers alike are learning how to address mesothelioma’s unique challenges.

Take, for instance, The Mesothelioma Center’s virtual support group. Hosted by Dana Nolan, a licensed mental health counselor, this group focuses exclusively on mesothelioma-related topics. It’s designed to fill the gap left by general support groups (or the lung cancer groups that many patients turn to in the absence of a mesothelioma-specific network).

In this free, telephone/online support group, patients and their loved ones are guided through emotionally-loaded issues such as:

  • Deciding when to forego cisplatin, carboplatin and other mesothelioma drugs in favor of alternative treatments
  • Adjusting to reduced physical abilities (when symptoms like breathlessness and chest pain get in the way of everyday activities)
  • Overcoming the financial challenges of paying for treatment, traveling to national treatment centers and taking a leave of absence from work
  • Discussing worst-case scenarios, legal arrangements and end-of-life care directives with relatives

Patients can also connect with others who share their same diagnosis. While it may be difficult for them to find other mesothelioma patients in their city, they can combat feelings of isolation by reaching out to other patients across the nation and around the world. Here, fellow survivors can share the therapies that they’ve found successful, outline the side effects they’ve experienced and explain the coping techniques that have improved their lives.

The group serves as a safe, confidential place to give and receive valuable emotional support. Patients are free to share as much – or as little – of their personal lives as they’d like, and the moderator will make sure patients aren’t inundated with unsolicited advice.

If you’d like to register for the next session (The Mesothelioma Center hosts one each month), simply fill out the quick information form. You’ll receive a number to call and an access code to enter on the day of the meeting. Patient advocates are also available to help you through the simple registration process.

Navigating A Diagnosis of Mesothelioma

mesothelioma-diagram-large-231x300

This post was written by guest blogger Tim Povtak.  Tim is a former newspaper reporter  who has been writing for The Mesothelioma Center since 2011.  The Mesothelioma Center provides incredible support and resources for people and families who need help understanding and coping with this disease.

Knowledge is key when it comes to battling malignant mesothelioma cancer. The more you know, the better you will feel about the fight. Not only is it tough to pronounce, it’s even tougher to understand all the intricacies involved.

Getting skilled help is crucial. It’s just not easy to do.

To help someone first diagnosed with mesothelioma, it’s vital to find the right resources – doctors and other medical professionals who see it regularly —  and a support group that is traveling the same route.

There is no replacement for experience.

Mesothelioma is a rare cancer – only 3,000 cases are diagnosed annually in the United States — caused almost exclusively by an exposure to asbestos, the naturally occurring mineral that was used extensively through much of the 20th century.

Reliable information can be difficult to find. Although there is no cure, recent curative advancements have been made. Novel therapies are being developed today. Alternative, supplemental remedies can help, too.

Selecting the right specialist might be the most important decision a patient will face. That’s where help, and support, is needed.

A typical diagnosis of mesothelioma may sound like a death sentence – six to 18 months was the norm not long ago – but many patients are surviving longer, and some even thriving, with the right help.

Rule No. 1: Don’t Do It Alone

As a caregiver, or just good friend, it’s important to learn about the disease. There is an easy-to-read encyclopedia of resources available at Asbestos.com.

The Mesothelioma Center helps patients and caregivers find the best doctors and the most appropriate cancer centers with the latest and greatest, most technologically advanced equipment. This is not the time to take short cuts.

At Asbestos.com, there are Patient Advocates who can advise patients and caregivers on where to turn, what to do next and how to connect with medical professionals. There is a registered nurse on staff to answer questions. There is a Veterans Department with counselors to answer questions that might be exclusive to veterans, helping navigate through the often-frustrating VA Health Care System.

Rule No. 2: Find a Support Group

There is a support group at Asbestos.com that meets the second Wednesday of each month at 8 p.m. EST. You can join in online or by phone. It’s moderated by a licensed mental health counselor and open to mesothelioma patients, families and caregivers who can ask questions, discuss concerns and chat on various topics.

There also is a Mesothelioma Facebook page, where ideas are exchanged and support is received. Also, check out the Wall of Hope, a section on mesothelioma survivors who have beaten the odds because they refused to concede to this terrible cancer.

Rule No. 3: Stay Positive

There is hope, so don’t believe all the gloom and doom. Explore the world of clinical trials. Mesothelioma treatment is changing. Gene therapy, immunotherapy, photodynamic therapy are the future, but they aren’t yet part of the traditional approach. They are available, though, through various clinical trials. Go to the National Cancer Institute website to see what is being offered.

Something could work. There is no universal therapy that works for everyone, but people respond differently to different treatments. Finding the right one sometimes takes the help of a friend.

WTF is a Cancer Coach?

 

I’ve heard of a football coach and a basketball coach– who hasn’t, right?  I’ve even heard of a career coach, a relationship coach, a wellness coach and a life coach… but a cancer coach???   Until recently, I had no idea there even existed such a thing… that is until I met Tambre Leighn, founder of Well Beyond Ordinary. 

 

Here’s the dealio (as my daughter always says)…

Cancer has the ability to affect every aspect of your life.  While some survivors plow through treatment and transition easily into life after cancer, others find it more difficult to do so.  In fact, it is not uncommon for people to feel victimized by cancer.  Some say that it even takes over their life causing previously held priorities and core values to shift.

 

Coaching is one tool that survivors and caregivers can use to reclaim their life after this potentially devastating diagnosis.  A cancer coach can provide you with support and tools to help reduce stress, address fears and create action plans so you feel empowered and in control again.  For a cancer coach, it’s not just about surviving a diagnosis of cancer, it’s about thriving in spite of cancer.

 

As with any profession, there are professionals who are the real deal and others who just pretend to be.  Since cancer coaching is a relatively new concept for many, I asked Tambre to suggest how we might be able to tell the difference between a qualified cancer coach and a wannabee when looking to hire one.  She suggests keeping the following in mind:

 

  • Educate yourself about coaching. Thousands of articles have been written about coaching in the past few years. Search the internet or visit the ICF Research Portal for research articles, case studies, journals, etc on coaching.
  • Interview several different coaches before you decide on one. Ask each about his or her experience, qualifications and skills.  Also ask for at least two references.  (Note: In some cases, confidentiality agreements may prohibit some coaches from giving you a reference.)
  • Look for a cancer coach who stands behind his or her work.  Often times coaches will offer an initial consultation free of charge as well as a money-back guarantee if you are not completely satisfied with the process.
  • Remember, coaching is an important relationship. Make sure a connection exists between you and the coach you choose.

If any survivors or caregivers reading this post have worked with a cancer coach and are willing to share their experiences, please either comment below or email me at robyn@cancerhawk.com.  Knowledge is power… please share the power.

 

Using Social Media to Navigate a Diagnosis of Cancer

Social-Media-Icons

No ifs, ands or buts about it… cancer sucks!  A diagnosis of cancer is life altering.  And for many, it is devastating – emotionally, physically, financially and socially.  Navigating a treatment plan and finding, much less making sense of, the information & existing resources that help cancer patients and caregivers is as challenging and confusing as the disease itself.  So what’s a person to do?

 

The more educated patients are about their disease, the better decisions they can make about their options.  Scouring the Internet for information on a specific type of cancer is relatively simple, although searchers must be cautious to visit reliable, trustworthy medical sites.*  In 2009-2010, I did tons of searching and researching while we were battling my husband’s cancer.  For me, the more I read, the more I learned, the smarter my Google searches became, and the more resources, information and treatment options I found.

 

My Paradigm Shift:

Today, I still search daily for information and resources that help patients and caregivers navigate their way through a diagnosis of cancer.  However, I rarely research using just Google anymore; instead much of my research is prompted by my interactions on Twitter and Facebook and from reading other people’s blogs.  It’s ironic that I say this because I’m the person who used to think that social media was a waste of time.  I had never even heard of a blog before 2010 and I thought Facebook and Twitter were simply another way for people to over-share their life using status updates.

 

I now see firsthand how social media enables patients, caregivers or anyone touched by cancer to make sense of their diagnosis by connecting them to the people, perspectives and resources they need when they need them.   Social media not only empowers people to share their stories and make friends (and to over-share life’s moments at times), but it is also a gateway to information they may not find from their doctor or via Google.  It’s how I find many of the things I write about on cancerhawk.com.

 

Facebook: The Great Connector

Facebook is most people’s go-to social media sharing site with over 1.06 billion active monthly users.  It’s the social media app that spans the largest age demographics- heck, both my 13 year old daughter and my 74 year old mother now have Facebooks.  As a result, Facebook is probably the easiest way to connect with a large group of family and friends; to keep them informed of what’s going on; to receive support and encouragement; and to gather information.

 

In his article “Using Facebook in the War On Cancer”Gabe Canales (aka @GabeCanales), prostate cancer survivor & founder of Blue Cure Foundation, writes that the instant connections made of Facebook can provide support, education and hope.  He says, “Such instant connections are a way to know immediately about new treatments and clinical trials and to share experiences about drugs, doctors, hospitals, treatments and other elements of the cancer journey.”  Knowledge is power… and Facebook makes it easy for knowledge to be shared.

 

Blogging Communities:  An Opportunity to Learn from Others

Blogs can be more than just personal diaries. They are websites that provide readers an opportunity to learn, ask questions and make comments regarding the author’s articles or posts.  Blogging communities and social networking sites such as Treatment Diaries; What Next; ColonTown, My BC Team, IHadCancer, Inspire also connect those touched by cancer with others facing a similar diagnosis.  Real life experiences, practical tips, lessons learned & treatment insights are easily shared in these forums.  Reading blogs also offers those who are shy or are embarrassed by their questions and concerns to learn without having to put their name or face out there.  Blogs are where I find some of the most in-depth, consistent coverage of what it’s like to live with and how to survive a diagnosis of cancer.

 

Twitter:   Where Questions Get Asked & Answered in Minutes

A little tweet goes a long way.  Twitter is where questions are asked and answered quickly in 140 characters or less.  In addition to learning about new treatments and clinical trials, Twitter also enables patients and caregivers to connect with others outside their immediate circle for support and information.  It’s where Stef Woods (aka @citygirlblogs), breast cancer survivor and advocate extraordinaire, went to connect with other young adult cancer survivors who understood what she was going through during her cancer treatments and beyond.  The tremendous support she received from her twitter followers helped her get through each day.

 

Twitter is where I go to connect with thousands of cancer patients, survivors, caregivers and patient advocates on a daily basis.  It’s where I met Stef and Gabe.  It’s where I find many of the different resources and information that I write about on cancerhawk.com.  I learn about things that I would never have been able to find via Google in part because Twitter makes it easy to search for keywords or terms using hashtags (#).  My search results often lead to instant patient and resource connections.  BTW, next time you’re on Twitter, check out tweets using my favorite hashtag #cancersucks ;-).

 

The Bottom Line:  Social media enables people- regardless of who they are,  where they live and whether you knew them previously or not- to connect with one another in incredible ways.  Knowledge and experience get shared; encouragement and support are offered; questions get answered; strangers become friends; treatment options and types of assistance are uncovered; hope can be found.  So if you’re feeling up to it, check out Twitter or Facebook or someone’s blog and see what new connections you make.  I’d love to hear about it if you do so please either comment below or email me at robyn@cancerhawk.com.  xoxoxxox

* For more information on finding credible information on the Internet, visit ThinkBright.org and eHow.com.

 

Financial Assistance for Pediatric Cancer Patients Living in South Carolina

 

If you live in South Carolina and have a child with a diagnosis of cancer, check out Children’s Chance- they help support South Carolina children and their families facing pediatric cancer with non-medical needs.

 

Children’s Chance offers the following programs & types of assistance:

*  Family Support Funds Program helps pay for non-medical bills such as mortgage/rent payments, electric bills, car insurance, car repairs, and other non-medical, everyday expenses.  All funds are paid directly to vendors.

*  Angel Funds Program helps families with out-of pocket expenses such as gas, food and telephone calls. These funds are especially helpful to families who must spend time in the hospital and away from the comforts of their home.

School Supply Bash provides children with cancer and their siblings free school supplies.

Counseling Program provides funding for counseling fees for any member of family who has been touched by pediatric cancer.   Services are available while the child is in treatment, after treatment ends, and for those families whose child loses their battle with cancer.

* Children’s Chance also hosts An Evening with the Gamecocks“, a very special evening where children and their families can dine and hang out with the University of South Carolina’s football team and coaches.

To qualify for assistance from Children’s Chance:

  • Family must be a resident of South Carolina
  • Child with cancer must be between the ages of 0-18 years
  • Child with cancer must be either currently in treatment or less than one year off treatment

To find out how more information on Children’s Chance, please contact their office at (803) 254-5996 or via email @ childrenschance@childrenschance.org.  

The name says it all… “Hope Connections for Cancer Support”


Let’s face it… cancer is a life-changing disease that has the potential to wreak havoc on anyone it touches- patient, caregiver, family & even close friends.

 

If you live in the greater Washington DC area, check out Hope Connections for Cancer Support - they help people with cancer (regardless of age or type of cancer) and their loved ones deal with the emotional and physical toll that comes with a cancer diagnosis.

 

Located in Bethesda, MD, Hope Connections offers the following FREE support services:

  • Professionally-facilitated support groups for individuals with any type of cancer; separate support groups for caregivers, family & friends
  • Professionally-facilitated monthly support groups for bladder cancer (one of 7 regularly held groups in the country); breast cancer; lung cancer, ovarian/gyn cancers; and one just for young adults with cancer
  • Educational workshops led by top oncology professionals
  • Stress reduction & mind-body programs such as yoga, pilates, guided meditation, knitting & more
  • Nutrition counseling

******* UPCOMING WORKSHOP “Helping Your Kids Cope with Your Cancer Diagnosis” – Monday, February 11, 6:00—7:30 p.m.  Prepare and strengthen your children by nurturing skills that will help them cope with your diagnosis. Psychiatrist Stephen Hersh, Director of the Medical Illness Counseling Center will offer guidance to help you navigate this challenging time. *******

 

 

For Pregnant Women Who Find Out They Have Cancer

Image credit: 123RF Stock Photo

 

Cancer doesn’t discriminate.  It doesn’t care if you are young or old, a good person or a mean one.  Cancer doesn’t care where you live or how much money you earn or what values & religious beliefs you hold.  And cancer doesn’t care if you are in the midst of bringing another life into the world either.  Yes, it’s true… pregnant women can be diagnosed with cancer just like anyone else.

 

Currently, cancer during pregnancy occurs in approximately one out of every 1,000 pregnancies.   And as more women delay childbirth until they’re older, the incidence of cancer during pregnancy, particularly breast cancer, is rising.  In the meantime, few oncologists or obstetricians treat more than 2 or 3 patients in this situation in an entire career and little research exists to help guide patients and their doctors on different treatment options.  So where can someone turn to get answers to questions about being treated for cancer during pregnancy…

 

Hope for Two is an organization dedicated to connecting woman who are pregnant with cancer to other women who have been pregnant with the same type of cancer.  Check out the “Survivor Stories” section of their website… it’s AMAZING!

 

The Cancer and Pregnancy Registry, which was created by and is currently maintained by Dr. Elyce Cardonick, collects information about the diagnosis, and treatment of cancer in pregnant women. With each patient’s permission, Dr. Cardonick reviews their cancer treatment and pregnancy outcomes. What is unique about this database is that the children are not only followed up until birth, but on an ongoing yearly basis. Pregnant women diagnosed with cancer find the registry helpful in learning how many other pregnant women were diagnosed and treated for the same cancer during pregnancy. Patient data is kept confidential.

Dr. Elyce Cardonick is also a Maternal Fetal Medicine specialist at Cooper University Hospital in New Jersey and is available to offer guidance to women and/or their physicians. She can work with your oncologist in deciding which tests and procedures can be performed, and when, during pregnancy to maximize the safety of the fetus while not compromising the chance of cure of the mother.

To reach Dr. Cardonick or to learn more about The Cancer and Pregnancy Registry, visit www.cancerandpregnancy.com or call 1-877-635-4499 (toll free).  A message may also be left on Dr. Cardonick’s private voicemail at 1-856-757-7876.

 

If you know of other good resources to help women who are pregnant and also have cancer, please jot them down as a comment on this blog… Knowledge is power, please share the power…