How to Support Someone with Cancer

Do you have a family member or a friend who has been diagnosed with cancer?

Have you been wondering how you might be able to provide support or do anything to help?

Often we don’t know what to say other than, “Let me know if there is anything that I can Triage Cancer Blog Supporting a Friend with Cancerdo.” While well-intentioned, an open-ended offer of support is unlikely to be followed up on. It can be more helpful to offer to do specific things for your family member or friend.

There are a number of helpful lists of suggestions available in the resources listed below, and we offer a few additional ways to offer practical help, here:

  • Practical help
    • Attend medical appointments and take notes
    • Sort mail
    • Sort medical bills, insurance company paperwork, and medical records
    • Make follow up calls to providers and insurance companies
    • Complete appeals paperwork
    • Apply for financial assistance programs
    • Pay bills
    • Create a spreadsheet of tax deductible medical and dental expenses (http://triagecancer.org/blog/tax-time-is-coming) to make tax time easier
    • Research clinical trials or treatment options
    • Schedule appointments
  • Errands
    • Provide transportation to medical appointments
    • Go grocery shopping
    • Drop off prepared meals
    • Pick up prescriptions
    • Pick up/send mail/buy stamps
    • Pick up dry cleaning
    • Pick up thank you cards (for your loved one to send to others who have helped)
  • Babysit
    • Pick up children from school
    • Take them to extracurricular activities
  • Household chores
    • Cook
    • Wash dishes
    • Do laundry
    • Vacuum
    • Dust
    • Change bedsheets
    • Change lightbulbs
    • Organize a closet
    • Rake leaves
    • Mow the law
    • Water plants
    • Feed/take care of pets

Resources

Supporting a Friend Who Has Cancer: www.cancer.net/coping-with-cancer/talking-with-family-and-friends/supporting-friend-who-has-cancer

Helping a Loved One with Cancer Long Distance: www.nccn.org/patients/resources/life_with_cancer/managing_symptoms/long_distance.aspx

These websites also have tips on how to help family members and friends and have great tools like calendars to schedule meal delivery, transportation to treatment, and more:

www.MyLifeline.org
www.CaringBridge.org
www.Lotsahelpinghands.com
www.foodtidings.com
www.takethemameal.com

Don’t be hurt or offended if your friend or family member doesn’t ask for your help or declines your help when you offer. Even if your friend or family member doesn’t need help, your willingness to be supportive will be appreciated.

Cancer-Related Fatigue – Fighting Those Zzzzzs

Triage Cancer FatigueHas your treatment left you feeling unusually tired? If yes, you be experiencing cancer-related fatigue.

What is cancer-related fatigue?

Cancer-related fatigue is a persistent feeling of physical, emotional, or mental tiredness or exhaustion related to cancer and/or its treatment. Some of the symptoms include:

  • Feeling tired and it not getting better, it constantly returning, or it becoming severe
  • Being more tired than usual during or after an activity
  • Feeling tired with no relation to any activity
  • Putting less effort into your appearance because you’re too tired
  • Being too tired to do the things you normally do
  • Having no energy and/or feeling weak
  • Feeling tired even with sufficient rest and sleep
  • Spending more time in bed and/or sleeping more
  • Staying in bed for more than 24 hours
  • Not being able to concentrate or focus your thoughts
  • Having trouble remembering things
  • Becoming confused
  • Feeling tired and it disrupting your work, social life, or daily routine
  • Feeling sad, depressed, or irritable
  • Feeling frustrated, irritable, and upset about the fatigue and its effects on your life

What causes cancer-related fatigue?

There are several factors that can contribute to cancer-related fatigue. Some of the causes include:

  • Cancer treatment
  • Anemia
  • High/low hormone levels
  • Loss of appetite
  • Dehydration
  • Lack of exercise
  • Anxiety
  • Depression

 How is cancer-related fatigue treated?

The first step in treating fatigue is to identify the cause. If the cause is not known, you may need to try several different methods in order to figure out which one works for you. Staying physically active can help both manage fatigue and improve strength. Over time, try to build up to 150 minutes of moderate activity (walking, cycling, swimming) per week. You can also add in strength training exercises. Make sure that you are staying hydrated, by drinking enough water.

A psychosocial care professional (e.g., therapist, counselor, social workers, psychologist, psychiatrist, etc.) can help provide you with emotional support, which may alleviate your fatigue. Many patients have also found that acupuncture and yoga can help. Cancer-related fatigue can persist months or years after treatment, so it’s important to receive both short-term and long-term care.

Although common among cancer patients, cancer-related fatigue is not something that should be taken lightly. It is important that you talk with your doctor, or other members of your health care team, if your fatigue is affecting your health and well-being.

For more information on cancer-related fatigue, click here.

Triage Life: Dealing with Documents

Triage Life Dealing with DocumentsDealing with the large amount of paperwork that accompanies medical treatment can be overwhelming. A cancer diagnosis introduces a steady stream of new documents, such as medical bills and prescriptions, in addition to the normal mail you get and paper that piles up in your home during everyday life. So, it is very common for medical treatment to create situational disorganization- disorganization is one’s day to day life that is brought upon by a major life event, such as a cancer diagnosis.

To address this issue, Triage Cancer hosted a webinar featuring Sara Skillen, CPO and owner of SkillSet Organizing, to discuss practical and achievable ways to keep medical paperwork organized and under control. Here are several resources presented in the webinar that help minimize paperwork-related stress when facing a cancer diagnosis:

Say Goodbye to Junk Mail

  • DMAChoice is an online tool developed by the Direct Marketing Association to help people manage mail. Through this website, you can request to stop receiving entire categories of mail, such as catalogs or credit offers, or you can unsubscribe from individual companies.
  • PaperKarma is an app that helps you eliminate unwanted paper mail with your smartphone. Simply take a picture of the unwanted mail through the app and you will be unsubscribed from the mailing list.

Keep it Together

  • The Lifebook is a comprehensive toolkit for those facing a serious medical diagnosis. The 3-ring binder features 16 tabbed sections for information such as lab reports and prescriptions, a 12-month appointment calendar, a business card holder, blank pages for notes, and much more.
  • LifeWrap is another resource that helps patients sort and store various medical information. In addition to a physical filing system, LifeWrap also provides a feature that allows users to make a digital replica of their information to store on their computer.

These are just a few of the great tips Sara presented during the webinar on how to reduce paper clutter when dealing with a major life event.

You can listen to the full webinar for more tips and resources. Thanks to Sara Skillen from SkillSet Organizing for joining Triage Cancer and sharing this valuable information!

Tech Advances: The Infusionarium & Improving the Patient Experience

InfusionariumIf someone asked you “if you could get your chemotherapy treatment anywhere you can imagine, where would it be?” What would you say? Underwater? In outer space? These questions were the inspiration for the Infusionarium at the Hyundai Cancer Institute at Children’s Hospital (CHOC) in Orange County, California.

The Infusionarium offers kids and teens the opportunity to explore the world all while receiving treatments such as chemotherapy infusions, radiation, and rehabilitation. Patients are able to choose between relaxing in a healing environment, watching TV or movies, and playing interactive video games.  The Infusionarium rooms are lined with screens that can transport you to faraway places, such as the Monterey Bay Aquarium or watching the Jet Propulsion Laboratory’s “Curiosity” rover on Mars! If you choose to spend time in the jungle, when you look up at the ceiling of the room, it’s like looking at the sky through the tree tops.

As more children and teens are surviving pediatric cancers, the need for emotional and psychosocial support has grown. Many other clinics and institutions are working to implement similar strategies to normalize treatment and build positive associations with receiving care and ultimately build strong, resilient people who are not just patients.

Staff members at CHOC have noted that patients using the Infusionarium tend to ask for less medication for nausea, anxiety, and diarrhea. Psychologically, cancer confounds what is considered to be normal adolescent development. As children and teens age, they want to become more independent, but with cancer treatment and care, kids and teens often remain in the phase of needing their parents. The Infusionarium gives patients the opportunity to assert their individuality and connect with other kids and teens facing the same experiences and issues.

At CHOC, the Infusionarium has become so popular that “traffic jams” build up throughout the day, as teens and children wait to use it. This innovative and technological advancement has improved the overall experience patients have during treatment by making the time spent receiving chemo, transfusions, and other medical treatments not just bearable, but interesting and even educational.

Balance Exercises After Cancer Treatment

by Carol Michales

Exercise may be the furthest thing from your mind after a cancer diagnosis. Even if you Triage Cancer Blog Exercisehave never been active, exercise can become one of your favorite activities. With more medical professionals recommending exercise to their patients, it is imperative for cancer survivors to learn how to exercise safely. First, ask your doctor before you start because each person is unique and heals differently.

A good exercise program will help to reduce the side effects of surgery and treatments. These side effects can include fatigue, neuropathy, decreased range of motion, weakness, lymphedema, balance issues, and a significant emotional toll. In this article, I will discuss the importance of adding balance exercises to your exercise plan.

Balance exercises will help you regain function and mobility for activities of daily living. Your balance can suffer after surgical procedures , especially with the TRAM flap procedure. A TRAM (transverse rectus abdominis myocutaneous) flap consists of skin, fat, rectus muscle, and blood vessels taken from the abdominal wall and transferred to the chest to reconstruct the breast. Because these muscles help with strength, posture, balance, and flexibility, TRAM flap surgery can weaken your body’s core. After a TRAM flap operation, you will need to learn how to compensate for this change of muscle placement through a series of exercises designed to strengthen the remaining muscles.

Balance exercises can counter some of the effects of muscle imbalances and body asymmetry after surgery. Some chemotherapy treatments can affect your balance and cause neuropathy. Neuropathy, which can make your feet numb, is a common side effect of chemotherapy. If you cannot feel your feet, it becomes difficult to maintain good balance. You should incorporate balance exercises as a regular part of your fitness routine to learn how to compensate.

Balance exercises can help prevent future injuries, such as falls. Balance training will help decrease the likeliness of falling.  If you fall, it could limit your activities or make it difficult to live independently. Balance and strength exercises can help prevent falls by improving your ability to control and maintain your body’s position whether you are in motion or stationary. Cancer survivors are sometimes at higher risk for osteoporosis due to cancer medications. If you are nervous about falling, you might withdraw from your daily activities and have a lower quality of life.

Tips to improve balance and increase lower body strength

Start your balance exercise routine with the following exercises. You may want to hold a chair for support at the beginning. As you improve, you can try holding the chair with only one hand or even one finger. The goal is to eventually do these without holding the chair at all. For an added challenge, try these exercises with your eyes closed:

  • Standing on one foot: Hold for 10 seconds then switch legs.
  • Tightrope: Put your heel in front of your toe of the other foot as if walking a tightrope.
  • Calf or heel raises: Stand in place and slowly raise each calf (or heel) up and down.
  • Front, back, and side leg lifts or raises: Standing in place, lift your leg to the front, back, or side.
  • Grapevines: Step sideways while crossing one foot in front of the other. On the next step, cross the foot in back of the other.

These exercises can help improve your core strength.

  • Pelvic tilt: Lie on your back with your knees bent and your feet flat on the floor. Inhale and fill your torso with air. Exhale while pressing your abdominals downward, bringing your navel to your spine. Lower and repeat for 5 to 10 reps.
  • Bridge: Lie on your back with your knees bent and your feet flat on the floor. Squeeze your glutes to lift your pelvis and ribs off the ground, leaving only your shoulders on the floor. Hold the bridge position for a few seconds, then lower and repeat. Complete 5 to 10 reps.

Carol Michaels is a Cancer Exercise Specialist and fitness consultant with more than 20 years of experience. She has worked with physicians and other health professionals to develop a cancer recovery fitness program that is currently offered at her studio, hospitals, cancer support organizations, and community centers. Carol received her degree from the Wharton School of the University of Pennsylvania and is certified by The Cancer Exercise Training Institute, American Council on Exercise, and the American College of Sports Medicine.

This post originally appeared on Cancer.net of February 9, 2016.

Cancer Survivorship Care Plans

Triage Cancer and the California Dialogue on Cancer (CDOC), have partnered together in the development of new tools to help increase the use of cancer survivorship care plans. These new tools include:

  • Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals
  • Fact Sheets for Survivors & Caregivers (English, Spanish, Chinese, & Tagalog)

CDOC is a state cancer coalition administered by the California Department of Public CDOC Survivorship Care PlansHealth’s Comprehensive Cancer Control Program. CDOC includes members from state and local governments; private and nonprofit organizations; health, medical, and business communities; academic institutions; researchers; cancer survivors; caregivers; and advocates. One of CDOC’s responsibilities is to develop California’s Comprehensive Cancer Control Plan to reduce the cancer burden in our state.

One of the specified survivorship goals in California’s Cancer Control Plan is to improve survivorship care by increasing the use of survivorship care plans. Triage Cancer led a Survivorship Care Plan Advisory Group, which included doctors, public health educators, researchers, social workers, advocates, caregivers, survivors from throughout the state of California to develop a toolkit and fact sheets to increase the use of survivorship care plans in California.

What is a Cancer Survivorship Care Plan?

A cancer survivorship care plan is a written document this is a valuable tool for patients and their health care teams to monitor and manage a patient’s ongoing physical and emotional health. It summarizes the treatment that a patient has received, describes follow up care a patient should receive, and helps patients navigate other post-treatment needs.

The institute of Medicine suggested that the following information should be included in an effective cancer survivorship care plan:

  • Treatment Summary: details of your cancer diagnosis, contact information for your previous health care providers, and any treatments received
  • Follow-Up Care Plan: specific recommendations for ongoing care, managing side effects, signs of recurrence, screenings, nutrition, exercise, chemoprevention, etc
  • Psychosocial Issues: relationships, parenting, sexuality and intimacy, body image, genetic counseling, etc.
  • Practical Issues: insurance, employment, education, finances, etc.
  • Resources & Referrals: cancer-related organizations, follow-up care providers, support groups, etc.

What is Cancer Survivorship?

The National Cancer Institute defines cancer survivorship from the point of diagnosis, throughout life. There are approximately 14.5 million cancer survivors in the United States. Cancer survivorship issues are really any issues that come up for patients and caregivers as a result of a cancer diagnosis. Those issues could be physical, emotional, and practical issues.

Cancer Survivorship Guidelines

Numerous entities in the cancer community have developed guidelines on survivorship care, such as ASCO, the American Cancer Society, NCCN. and the Children’s Oncology Group. In 2012, the Commission on Cancer released accreditation standards, which require cancer centers to provide survivorship care plans to all of their eligible patients by January 1, 2019.

Cancer Survivorship Care Plans: A Toolkit for Health Care Professionals

In order to help cancer centers provide survivorship care plans, Triage Cancer and CDOC developed a toolkit that includes these topics:

  • Introduction to Cancer Survivorship & Survivorship Care Plans
  • Elements of an Effective Survivorship Care Plan
  • Survivorship & Survivorship Care Plan Guidelines
  • Survivorship Care Plan Templates
  • Implementing Survivorship Care Plans
  • Survivorship Care Plan Implementation Challenges & Practices
  • A Call to Action
  • Survivorship Care Plan Resources

Cancer Survivorship Care Plan Fact Sheets

In addition to the Toolkit, Triage Cancer and CDOC also created fact sheets about cancer survivorship care plans, to help patients and caregivers understand what they are and empower them to talk with their health care teams about this resource.

Click here to download a free copy of the Toolkit and fact sheets.

Click here to watch a video about cancer survivorship care plans.

Resilience: Thriving, Not Just Surviving

by Ruth Bachman, The Hourglass Fund Project, Inspiring Speaker and Award-winning Author
 
In three words I can sum up everything I’ve learned about life: it goes on. ~Robert Frost
 
HourglassCancer is a very powerful and proficient teacher with the potential for profound transformation. It is a change that draws a line in the sand between the way we once looked at life and death and how we currently live life after surrendering, accepting, letting go and integrating that insight into who we are.
In his book, The Beethoven Factor, Dr. Paul Pearsall describes “Thrivers” as those who know when to hold ‘em and know when to fold ‘em.” He defines “thriving” as stress induced growth that happens when we face a challenge. The way we respond to change – both large and small – is a good indication of our level of resilience.
Resilience is navigating the complexity of everyday life with resources that promote well-being and cushion us against being overwhelmed. Most experts agree the key indicators of resilience are: self-awareness, mindfulness, purpose, self-care and relationships. Resilience is a complex set of skills and attitudes that can be enhanced and learned.  A resilient response to change is far from effortless.  Not unlike a garden, cultivating resilience requires intention, attention and effort which allows us to grow.
Within the depths of winter, it is hard to imagine spring. The beauty of nature takes time. Imagine tending a garden – your very own little plot of earth. Trust that it can be cultivated and that cultivation will bring it to its full potential. Even though it’s full of rocks and the soil is dry, you begin to plow your plot with patience, sowing the seeds of your future well-being. At the beginning, joy might be found in just feeling that your little plot of earth is workable. You stop looking for a different or better place to be. This does not mean that there are suddenly flowers growing where there were previously only rocks. It means you have confidence and hope that something will grow here. As you cultivate your garden, tending it with a quiet mind and an open heart, the conditions become more conducive to growth. Slow down, breathe deeply, listen to your heart. Have patience and faith. Something beautiful will blossom in your garden.
        
How do we increase our resilience? Primarily by putting forth the effort each day to focus on what is right – cultivating the positive. It sounds so simple. The key is focus – where are we bringing our attention?
For more information on how to build resiliency, attend our next webinar, featuring Ruth, on April 19, 2016. Register at http://triagecancer.org/webinars/. Can’t attend, not to worry, we record our webinars and post them for later viewing.

Family Planning After Cancer: Surrogacy

Cancer treatment can affect people in many different ways, but one we often don’t think about is the impact on an individual’s ability to have children.

People who have received cancer treatment and still want to have a family, but did not have the ability to preserve their fertility before treatment, may be unsure about their options.

One option for building a family is surrogacy.

Surrogacy is when a woman (called a surrogate mother) becomes pregnant and gives birth to a baby in order to give that baby to someone who cannot have their own children.

Triage Cancer recently talked with Baby Bump Journeys, about the valuable role that Triage Cancer Baby Bump Journeyssurrogacy services can play in helping people achieve their dreams of building a family, even in the wake of a cancer diagnosis.

In 2012, The Huffington Post, wrote about the increased use of surrogacy services and explained the step-by-step process in this article.

The process of finding the right person to carry your child can seem like an insurmountable challenge, but surrogacy services can help you not only find a surrogate, but navigate the detailed process of ensuring you have the right legal protections in place.

It is important to understand that your surrogacy options may vary based on the laws in your state. Click here for information about gestational surrogacy laws across the United States.

Surrogacy services can not only connect you with a surrogate, but also with doctors and lawyers who can take care of your family’s needs during the surrogacy process.

For more information about this and other options for family planning after cancer, join Triage Cancer for our FREE webinar:

From Cancer Survivorship to Diaper Changes: Creating a Family After Cancer
May 18, 2016
12pm Pacific/3pm Eastern
Register here

Cancer Exposure at Camp Lejeune

Dept of NavyWere you, or someone you know, stationed at the U.S. Marine Corps Base Camp Lejeune, in North Carolina, between August 1, 1952 and December 31, 1987?

If yes, you may be eligible for health benefits if you served on active duty or resided at Camp Lejeune for 30 days or more during that time period, due to exposure to contaminated drinking water. The U.S. Department of Veterans Affairs (VA) has acknowledged that exposure to Camp Lejeune’s contaminated drinking water increases your risk for cancer and other medical conditions:

• Bladder cancer
• Breast cancer
• Esophageal cancer
• Female infertility
• Hepatic steatosis
• Kidney cancer
• Leukemia
• Lung cancer
• Miscarriage
• Multiple myeloma
• Myelodysplastic syndromes
• Neurobehavioral effects
• Non-Hodgkin’s lymphoma
• Renal toxicity
• Scleroderma

An estimated 900,000 active duty and reserve personnel were assigned to Camp Lejeune during the time the water was contaminated.

For more information, visit: http://benefits.va.gov/compensation/claims-postservice-exposures-camp_lejeune_water.asp and www.publichealth.va.gov/exposures/camp-lejeune.

The Gift of Music – Beyond the Concert

Written by Do It For The Love Foundation Outreach Director Julie Dalrymple with submissions from Stephanie Tuma, Lisa Toledo and Wesleigh Roeca. This blog originally appeared here.

Triage Cancer Blog - For The Love FoundationThat moment when the entire audience is in sync, singing along to a familiar tune, bouncing with the rhythm and basking in the collective energy . . . it’s a moment of escape, joy at its purest and for some, it’s magic.

It brings those confined to a wheelchair to their feet, eases the pain inflicted by countless chemo treatments, and energizes even the most weary of souls. But the healing power of music goes even further, providing profound inspiration to those who have watched their loved ones struggle. For a moment, together they outrun the diagnosis and celebrate life, fully engulfed in the experience. And once the concert has ended, often that is when the most profound effects are realized.

The Do It For The Love Foundation provides the opportunity for loved ones of those dealing with severe health challenges to offer support in a unique way by submitting a nomination for a live music experience. It’s a gift that speaks more than words.

“I realized that this experience helped more than just me,” wrote Stephanie, a 23-year old living with a rare and life-threatening genetic condition. “Often times we forget that being sick is hard but watching someone helplessly be sick is hard too. This provided an opportunity for my mother to say “help me” without speaking words. She reached out to the foundation to help her do something that made her feel good. It was one of the nicest things she could have done. By nominating me she was able to show me her love.”

The power of music transcends words and, as Stephanie experienced during her wish grant, it can provide a bridge during a difficult time. “Unspoken love is something that isn’t always apparent, but this whole experience spoke love in volumes.”

Triage Cancer Blog - Michael Franti“During that evening, I watched all these amazing positive things unfold before my eyes with two of my favorite people and afterwards all I could think about is how much I love my mom. We danced and high-fived and hugged our way through the evening leaving all the unspoken words float around us because in spite of all the obstacles life gives us, whether big or small, there’s one thing that keeps us all connected . . . music.”

Another magical moment happened just a few seats over at that same show. Sam has cerebral palsy, and uses a wheelchair for mobility. Despite his physical limitations, he’s always found great joy in listening to music and dancing. Sam’s aunt Lisa nominated him for a concert with Michael Franti and the experience was just as moving for her as it was for her nephew.

“Watching Sam smile, clap and sing was heartwarming, but the most astonishing surprise to all of us was that Sam stood on his feet the entire time Michael was playing!” said Lisa. “At one point Sam turned to me and said “I want to jump!” I, of course, burst into tears and then proceeded to aid him in bouncing around with the rest of the audience!”

Sam not only found inspiration through the music himself, but he also inspired his family Triage Cancer Blog - Sam For the Loveto believe in miracles: “If there is such a thing as a miracles made through music, I would say that night for Sam would count as one.”

It’s heartbreaking to find out that one of our wish grant recipients has lost his or her battle. Last summer, Do It For the Love granted a wish for Wendy, a vivacious and lovely woman living with stage IV colon cancer. She beamed from the stage during her wish grant, singing on stage with Michael Franti, as her proud son and daughter looked on.

“The emotions it now evokes are so powerful, they’re hard to convey, and my brother and I are beyond grateful to the Do It For The Love team for creating such a remarkable memory for us,” said Wendy’s daughter, Wesleigh. “As I held her hands, she smiled and sang and danced. She was so happy…as were we. Her cancer didn’t bear weight on her, or on us. Although our mom passed away in September, this memory exists forever, and we really did feel the healing power of music.”

The memory of these moments is the most sacred effect of these wish grant experiences. That reminder of a smile and a laugh endures long after the music stops.

An unspoken bond, a miracle, a memory – there’s an unquestionable power in the live music experience. Do It For the Love provides wish grants for those going through the greatest challenges of life. And while the smile on a recipient’s face is priceless, the stories from their loved ones add a depth that is often unexpected. That’s what’s so great about a genuine live music experience – it is always full of surprises.