Category Archives: Caregivers/Friends and Family

Finding Hope through a Clinical Trial

Clinical Trials

 

 

 

 

 

 

 

This is a guest blog post from the Cancer Support Community.

Elisa was in her early 30s when she was diagnosed with breast cancer. In the eight years since then she has been through surgery, radiation and six different chemotherapies. Early this year, she learned her cancer was progressing, and she was running out of options. Elisa lives in Chile. A friend, who is a cancer specialist, told her about an immunotherapy trial in Chicago for which she might be a candidate. Elisa and her mother made the long journey from South America to Illinois to be part of this innovative study. Right now, she is doing well. While the future may remain uncertain, being part of this trial has given her hope.

Bill is a successful lawyer, a husband and father. Twelve years ago, he was diagnosed and treated for a rare brain tumor. He went on with his life, until the tumor returned in October. Standard therapy offered little chance for a good or lasting response. His doctors in Chicago suggested that he go to New York for a clinical trial with a new targeted therapy. Now, he still practices law, takes care of his family and travels every few weeks for his innovative therapy.

What can we learn from these two stories?

First, by joining a clinical trial, both Elisa and Bill were treated with new therapies that would otherwise not have been available to them. Like many people with advanced or difficult to treat tumors, they knew that their best option was to consider joining a clinical trial. That put them at the forefront of cancer research. Both knew when they made the decision to leave their homes and travel to another cancer center that there was no guarantee that they would respond to the treatment. They made conscious choices to be a part of something that might make a difference for them, and for other people facing similar cancers.

It takes courage and belief to join a clinical trial.  Many cancer patients bring those characteristics to their experience. From the moment a person hears the diagnosis of cancer, he or she enters a strange new world.  This new world requires making decisions about treatment and care. For many, that may include the opportunity to join a clinical trial, yet another unknown territory. The hope that new treatments bring is a beacon of light in that world.

Elisa and Bill represent the people facing cancer who actively seek information about the treatments available for their cancer, who work as partners with their doctors and health care teams to make the best decisions about their care. They both made choices that involved dislocation, uncertainty and loss. They made these choices because the clinical trial represented something more important. They chose hope–hope for longer, better lives.  They chose hope for the future, for themselves, the people who love them and everyone who ever faces cancer. Hope is what inspires courage and belief. Hope drives clinical trials.

To learn more about Clinical Trials, check out the Cancer Support Community’s new Frankly Speaking about Cancer Clinical Trials program at www.CancerSupportCommunity.org/ClinicalTrials.

5 Cancer Prevention Tips

This content is originally from the Prevent Cancer Foundation .

More than 1.6 million Americans will be diagnosed with cancer this year and more than 589,000 will die. However, research shows that up to 50 percent of cancer cases and deaths are preventable.

In February, we honor National Cancer Prevention Month. Here are steps to prevent cancer from the Prevent Cancer Foundation:

  1. Don’t Use Tobacco. The use of tobacco products has been linked to many types of cancer, including lung, colorectal, breast, throat, cervical, bladder, mouth and esophageal. It’s never too late to quit. About 90 percent of all lung cancer is related to smoking. Non-smokers who are exposed to secondhand smoke are also at risk for lung cancer and other respiratory conditions.
  2. Protect your skin from the sun. Skin cancer is the most common and most preventable cancer in the United States. More than 3.5 million skin cancers in over two million people are diagnosed annually. Exposure to the sun’s ultraviolet radiation causes most skin cancer. Be sure to use adequate sun protection year-round. Never use indoor tanning beds.
  3. Eat a healthy diet. Eat lots of fruits, vegetables, beans and whole grains. Limit red meat and cut out processed meats. It is also important to limit alcohol consumption because alcohol can increase your risk for liver, colorectal and breast cancers. If you drink alcohol, have no more than two drinks a day if you are a man or one drink a day if you are a woman.
  4. Maintain a healthy weight and be physically active. Getting at least 30 minutes of physical activity each day can make a big difference in your general health and well-being. Inactivity and obesity have been linked to breast and colorectal cancer, and there is also some evidence of a link to lung and pancreatic cancer. Add exercise to your routine to reduce stress, increase energy, boost your immune system, control your weight and reduce your risk for cancer.
  5. Know your family medical history and get regular cancer screenings. Talk to your health care professional about cancer screening. Some tests can help detect cancer early, when treatment is more likely to be successful, and some can also detect precancerous conditions before they become cancer. While screening has been proven to save lives, screening guidelines aren’t always “one size fits all.”

To see more cancer prevention tips from the Prevent Cancer Foundation, click here.

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About Prevent Cancer Foundation: 
The mission of the Prevent Cancer Foundation is saving lives through cancer prevention and early detection. Their vision is to Stop Cancer Before It Starts! The Prevent Cancer Foundation advocates and supports the prevention and early detection of cancer through Research, Education, Advocacy and Community Outreach. To learn more, visit

Activate Your Support Network Online

A cancer diagnosis can overwhelm entire families in addition to the physical and emotional toll it takes on patients. Many questions are raised that often go unanswered, at least initially. The sheer volume of communication needed to provide updates to family members and friends can also be overwhelming. MyLifeLine.org, a Denver-based non-profit focused on social and emotional support services for cancer patients, was created to help solve this problem.

MyLifeLine.org exists to reduce the stress and anxiety associated with a cancer diagnosis. We connect cancer patients and caregivers to their community of family and friends for social and emotional support. We provide free personalized web sites, communication services, cancer resources and tools that allow patients and caregivers to share their journey and focus on healing.

STAYING CONNECTED

MyLifeLine.org was founded in 2007 by Marcia Donziger, who was diagnosed with ovarian cancer in 1997, when she was 27 years old. She felt overwhelmed by the volume of communication, during a time when she was struggling to fight the cancer inside her. Marcia couldn’t physically return all the phone calls herself, and found it emotionally draining to repeat the same information about her condition, over and over.

In 2003, Marcia became aware of a special young woman, Lori Arquilla Andersen, who had just been diagnosed with cancer. Marcia was profoundly inspired – not just by Lori’s strength through crisis, but also by the way she harnessed the tools available to stay in touch with her family and friends during her illness. Through her own personal website, Lori posted her progress and courageously inspired all who followed her struggle. As time went on, Lori’s support network expanded beyond her imagination. People visited Lori’s site to write encouraging messages, offer help to her family, or just stay updated and keep her in their prayers.

Inspired by Lori and her family, Marcia saw the tremendous benefit for cancer patients to communicate via a personal website. Sharing updates and managing caring messages via one central website can help everyone touched by cancer to deal with it. Marcia saw an opportunity to make a difference and extended the benefit of free, personal websites to all cancer patients. Thus MyLifeLine.org was born as a non-profit organization.

BUILD YOUR SUPPORT COMMUNITY

I became involved with MyLifeLine.org due to my own experiences and the promising role technology plays to help patients and caregivers. I live in Denver with my wife and two young children while the rest of my extended family resides on the East Coast. When a family member experiences a health issue it can be difficult to travel to see them and provide support in person. Today’s technology, however, ensures that every patient can stay connected to their entire support community, and each member of the support community has the ability to stay involved and provide strength and inspiration to the patient. Research has shown that a thriving support community is beneficial to patients’ healing process.MyLifeLine.org Devices

  • A recent study of 735,0000 cancer patients included in the Surveillance, Epidemiology and End Results program found that improving social support for our patients may be equally as important as providing effective therapy, and it is less costly to develop and implement.1
  • The provision of practical support increases the likelihood of adherence to evidence-based medicine 3.6 times.” 2

Patients aren’t the only ones who can benefit from a strong support community. Caregivers, the people taking care of the patients and coordinating communication and care, need to be supported just as much as the patient. It can be equally overwhelming to be the primary person supporting the patient and managing care, appointments, medications, meals and transportation on top of lives that are already busy.

WHAT PATIENTS & THE ONCOLOGY COMMUNITY ARE SAYING

A goal of MyLifeLine.org is to become the preferred communication platform for the cancer community. We recently partnered with the American Cancer Society to provide web sites and social support services to their constituents, and the American Cancer Society will direct patients and caregivers to MyLifeLine.org’s services.

Since our launch in 2007, we have helped more than 144,000 people affected by cancer globally and are on track to add 1,500+ new patients and 18,500+ new family members and friends to our list of registered guests in 2015.

I encourage anyone facing cancer, or anyone who knows someone with cancer, to consider setting up a free site with MyLifeLine.org. We’ve heard from a countless number of people how it positively changed their experience with cancer. A family living across the country was able to know when their loved one had a chemo appointment. A small town rallied around a hardworking individual to raise thousands of dollars for their medical costs. A single woman was able to schedule meals delivered to her from her eager to help group of friends. We heard from one patient who loved MyLifeLine.org because he was able to have a sense of normalcy with his friends; since they were up to date on his condition, they could spend time together without asking about his cancer.

MyLifeLine.org goes beyond the personal websites to connect patients and caregivers to their support community, and allow them to gain control, be empowered and become their own advocate. The service is offered for free to all people impacted by cancer.

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1. Aizer AA, Chen M-H, McCarthy EP, et al: Marital status and survival in patients with cancer. Journal of Clinical Oncology 31:3869-3876, 2013

2. DiMatteo MR: Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology 23:207-218, 2004

 

Creating Your Caregiver Support Network

This is a guest blog post about creating your caregiver support network by The Caregiver Space, a non-profit dedicated to providing a supportive online space where all caregivers can share their stories and reach out to other caregivers.

One of the most important things you can do for yourself as a caregiver is to create a support network. Family, friends, medical professionals, fellow caregivers—these are all people that can become your foundation and your source of strength.

When you devote your time and energy to caring for a loved one, you are susceptible to burnout, depression, sickness and stress. With a healthy support system in place, you will be cared for when life happens.

Inform friends and family

Family and friends may have always been the center of your foundation, but caregiving can be an isolating task that can draw you away from the people you love. It’s important that they stay informed on your loved one’s progress and your well being through email, phone calls, coffee dates, or any other method of communication, like a personal website on MyLifeLine.org.

MyLifeLine.org can help you easily connect with your friends and family to keep them informed on you and your loved one. Your friends and family want to hear from you, and MyLifeLine.org makes it easy to update your entire support network.

Connecting with your family by writing about your experience in journal or blog form is particularly helpful. It allows you the relief of communicating some of your struggles, hopes and fears and it also gives your family and friends the ability to have a greater understanding of your journey.

Find a professional caregiver to support you

There may be times when your friends and family are unavailable to cover for you when you need a weekend to rest. Don’t be afraid to reach out for some professional support. Look for home health aides or certified nurse aides, ask about their support capacities and their training, set up an interview or a trial.

Get involved with support groups

In addition to your family, friends, and fellow caregivers, a structured support group may be beneficial. You can find support groups online in designated chat rooms or in person groups at your hospital. You can find groups to help you understand and cope with a specific affliction or a group particularly geared to helping caregivers.

Organize your support system

Make a list of friends, family, neighbors, caregivers and professionals that are available to support you. Divide them into groups: who can be there for you in an emergency? Who can you call to talk to every day? Who is able to take care of your loved one when you need time to take care of yourself? Who can help you keep your network informed on you and your loved one’s journey? Keep that list somewhere you can reference it every day.

There will be times when you feel in control and times when everything seems out of your grasp. Reach out. Pick up the phone and make a call to someone in your caregiver support network. The people who love you want to lend a hand. You can also post on the Helping Calendar on your MyLifeLine.org personal site when you need help but don’t want to ask  your friends and family directly.

Don’t be afraid to ask for and accept help from your support system. You are helping your network by giving them something to do that will support you and your loved one.

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About The Caregiver Space:
The Caregiver space is a non-profit dedicated to providing a supportive online space where all caregivers can share their stories and reach out to other caregivers. This is a space where you can get connected to caregiving resources, read realistic advice ranging from financial matters to personal matters in the home, and find solutions from other caregivers who’ve been there. Every caregiver, regardless of his/her journey, is welcome here.

Helping Children Cope Through a Loved One’s Cancer Diagnosis

This is a guest post by Jill Mitchell, PhD, LCSW, OSW-C and member of MyLifeLine.org’s Oncology Advisory Council.

For parents or grandparents with cancer, “What should I say to my young kids?” and “How can I help them to cope?” are often primary concerns.

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Jill Mitchell, Post Author

Although one person in the family has the physical disease of cancer, everyone in the family may struggle with the emotional, social, and psychological aspects of the illness.  Here are some pointers to keep in mind in helping the children in your life to cope with their loved one’s diagnosis with cancer.

  • Communicate with your children
    • Let them know that you are open to their questions
    • Be honest
    • Use the word “cancer” so that you can own that definition, and help dispel some of the misconceptions that they might be exposed to.
    • Check-in and encourage questions from your child, but also follow your child’s lead with regard to how much information they want to hear at one time. Just like adults, children sometimes need to process the information in bite-sized pieces.
  • Give children an outlet for their questions, thoughts, and emotions
    • For younger children, who are not as verbal, you may want to encourage them to draw pictures to express what they’re thinking or feeling
    • Since kids will sometimes be as eager to “protect” you from scary thoughts as you are eager to protect them, it can be helpful to identify an additional calm and trusted adult (teacher, aunt, grandparent, etc.) with whom they can talk if they have questions or concerns.
  • Kids often want to help
    • Assist them in figuring out age-appropriate ways to help you through this process (for example — drawing pictures for the loved one, doing dishes, walking the dog, etc.)
    • But re-affirm that school is their primary “job”
  • Keep as much structure as possible
    • Some disruption in schedules will be inevitable. That said, over the long-run as much consistency as you can keep for your child’s schedule (continuing to attend daycare, school, camp, or team practices, for example) can help them to cope.

What are some common concerns that children often have?

  • Younger children have a tendency toward “magical thinking”. They may think that they have caused the cancer because they acted badly, or that they could control the cancer through doing everything right. So, it is important to be on the lookout for this, and to let children know that they are not responsible for the cancer or for your health.  In addition, help guide the child to find age-appropriate ways to show their support (helping with chores, drawing pictures or writing cards, etc.)
  • Kids may also be afraid to get close to, hug, or kiss someone with cancer for fear that they may get sick. It’s important to clear up any misconceptions about “catching” cancer.
  • Don’t be surprised if most of your child’s questions focus on what will happen to them through this process –
    • “Will I get this?”
    • “Will I be able to go to the birthday party?”
    • And especially, “Who will take care of me if Mom/Dad gets too sick?”

These are normal, healthy questions.  Having a plan in place that the child is aware of can be very helpful.

  • Be prepared for the possibility that your child might ask if you could die.
    • Think in advance about how you might answer this.
    • Acknowledge this fear.
    • AND, reassure your child that you have a team of medical providers who are helping you.

Some other things you may want to consider:

  • How emotionally ready are you to talk? If you feel overwhelmed, is there another adult/family member who could help with the discussions?
  • Keep the child’s school in the loop. School can be a safe-haven and a source of supportive structure for the child.  It can be helpful to identify a main contact at the school to keep informed and to help inform you if they notice behavioral changes in your child that may be signs of distress.
  • Make time for fun, play, and social interaction because this can be as critical in helping children to cope as it is for adults.

Other resources that you might wish to explore:

About the author: Jill Mitchell received her doctorate in Medical Anthropology from UCLA, where she explored the intersection of culture, biology, and psychology in research focused on women’s experiences with metastatic breast cancer.   After realizing her passion for working with people with cancer, she then went on to complete a Masters in Social Work.  Dr. Mitchell, is presently an oncology-certified  licensed clinical social worker with Rocky Mountain Cancer Centers in Colorado, where she counsels patients one-on-one, facilitates various support groups, and coordinates an international educational webinar series for psychosocial oncology professionals.    She also serves as a volunteer on the Advisory Council for the National non-profit,  MyLifeLine.org.  Dr. Mitchell values humanity in the context of medical treatment, getting to know patients as people first, and helping patients and survivors find peace, meaning, and growth, even in the midst of their experience with cancer.

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Cancer Caregiver Needs Overlooked for Too Long

Marcia

Marcia Donziger

Last month in Denver, I experienced the CancerCon Conference for the first time. Hosted by Stupid Cancer, hundreds of young adults fighting cancer gathered to meet, make new friends, share stories, learn about resources and discover they were not alone.

I was asked to facilitate a workshop on peer support for caregivers – the spouses, parents, children, siblings, significant others – those taking care of patients at home 24/7.

My colleague, Jill Mitchell, Phd., led the session with me. Jill is an oncology social worker at Rocky Mountain Cancer Center in Boulder, Colorado, and a long-standing member of the MyLifeLine.org Oncology Advisory Council.

Fifty participants attended our session and the room was full. Do you know what surprised and impressed me the most? Ninety percent of these participants were men, specifically husbands caring for wives with cancer.

These men looked battle-weary in the aftermath of cancer hitting their homes. Yet they were brave – ready, willing and able to be vulnerable and share fears with each other in our group setting. Not your stereotypical expectation of men!

We began the session by asking what the biggest challenges were. The answers weren’t surprising:

  • Fear of losing their loved one
  • Loss of control of their lives
  • Cannot see what the future looks like
  • No time to take care of themselves
  • Financial burdens

One man had a “deer in the headlights” look, absolutely terrified of this horrific world that cancer brought down his fiancé. One week after he proposed to his girlfriend last summer, she was diagnosed with ovarian cancer. She is 26, and is now newly diagnosed with a second type of cancer.

Another man shared that his wife is in remission, and it’s even harder to be a caregiver after the medical treatment ends. As a man, he said he needs to fix problems. During active treatment, he was busy and productive – driving her to the doctor, assisting with treatment decisions, monitoring medications, making meals, and more. Now that her treatment is over, he is feeling lost and doesn’t know how to help her through the emotional tidal waves that still come across her. He overcompensates by helping her in the “wrong” ways, which causes significant friction in their relationship. He is frustrated that treatment ended and their life is not back to normal.

When I asked the group what did work in helping them over hurdles, here are some responses:

  • Support from other caregivers who have been there
  • One combined outlet for information and guidance
  • Family getting involved to help with daily care needs and help with kids
  • Remembering that “every day is a new day”
  • Open communication about personal struggles related to caregiving
  • The chance to get away for a few hours
  • Healthy distractions – it can’t always be about cancer

One man’s cry for help was, “I need my friends and family to recognize that I need time for myself. I need them to volunteer to take over, so I can take care of myself too.” Every other person in the room nodded emphatically. Yes, they need a break! It’s exhausting; it’s draining; it’s often thankless work.

Caregiving is one of the most important ways we show love to those important to us. There’s no big paycheck, medal or award. We know our loved ones would do the same for us. It’s what we do for love.

Leading this session reinforced my belief that caregivers are the unsung heroes in the fight against cancer. It’s time to take notice of the caregivers in our lives. Thank them, give them a day off or bring them a meal. Anything makes a difference. They need to know how appreciated and loved they are too.

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4 ways MyLifeLine.org can help during your cancer experience

When someone is diagnosed with cancer it’s easy for them to become overwhelmed with the influx of new information. Not only are they suddenly bombarded with doctor appointments, gathering resources, learning about their diagnosis and making treatment decisions, but there’s the family members and friends who want regular updates on progress and want to know how to help.

Returning every phone call, email and request for information can be exhausting. MyLifeLine.org Cancer Foundation is an important resource that can help relieve the burden of communication that cancer patients and caregivers often feel.

Here are a few ways MyLifeLine.org can help:MyLifeLine Features

  1. Build a Community of Support. Patients and caregivers can easily organize and coordinate the help they need using the Helping Calendar. Set up rides to treatment, a babysitter for the kids or a friend to bring meals, all through your MyLifeLine.org personal site.
  2. Communicate with Friends and Family. Patients can share updates on progress and treatment, or use the tool to journal about their experience, all in one central location. Patients often use MyLifeLine.org as an outlet and personal blog during their experience, and friends and family can leave comments of encouragement and support on each update.
  3. Collect Resources on Your Specific Cancer. The Learning Links tool enables patients to collect resources and share information about their specific cancer type with friends and family, so they can easily get a betterunderstanding of their diagnosis.
  4. Create a Personal Fundraiser. Friends and family can easily donate directly to the patient to help with treatment costs and other medical needs using PayPal through the Giving Angels tool on your MyLifeLine.org personal site.

Every day, MyLifeLine.org provides free, personal and private websites to cancer patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. A patient – or a friend or family member, can create a site and invite guests to visit and offer support. Click here to set up a MyLifeLine.org personal site and start building your online support community.

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Meet Laura, a Cancer Support Helpline counselor

This is a guest blog post by the Cancer Support Community (CSC). 

Are you newly diagnosed with cancer and unsure of what to do next? Or a longtime survivor looking for new resources? CSC’s toll-free Cancer Support Helpline (1-888-793-9355) is available to help you navigate every step of your cancer journey. Professionals like Laura, one of the Helpline’s licensed mental health professionals, are equipped to help you find the support you need!

CSC spoke with Laura to learn more about how she got involved with the Cancer Support Helpline and how it makes a difference in the lives of people touched by cancer.

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Laura, a Cancer Support Helpline professional

CSC: How did you become so interested in the cancer experience?

Laura: I found my passion for oncology work when I did my internship for my Master’s in Social Work degree at the Cancer Support Community (then The Wellness Community) in 1999-2000. While co-facilitating support groups and working one on one with cancer patients and their support persons, I began to understand how enriching this work really is. I’ve worked in the field of oncology social work ever since.

CSC: What type of training did you receive to become a call counselor for the Helpline?

Laura: First of all, I had my Master’s in Social Work degree and am a Licensed Clinical Social Worker. I also have extensive experience in the field of oncology social work, including pediatric oncology, support group facilitation, program development and evaluation as a former Program Director, and hospice experience. Once hired, though, I went through a specific and intensive training to become a call center counselor. We continue to be trained on some of the more technical aspects of the job, but also learn more of the clinical pieces, as we continue to expand on the services that we provide (i.e. Distress Screening, Open to Options, etc.)

CSC: What services does the Cancer Support Helpline provide?

Laura: We provide support for callers, in general. What that looks like from one call to the next, though, may vary. Some people are looking for resources. We try to assess their needs and educate them about both national and local resources that they could benefit from. Others are just looking for someone to talk to and process with. While we do not provide ongoing intensive counseling, we can provide people with compassion and understanding and sometimes just talk them through a difficult moment and then try to link them to those resources that will help them in the long term.

Outside of the “general”, we also have some more specific things that we can provide for callers. We can offer distress screening, which is a brief tool that is done online and helps identify where people are experiencing the most difficulty. That allows the caller to have better insight about their own distress and also allows us to more appropriately intervene. We also can provide our Open to Options program to those who have an upcoming doctor’s appointment where they will be deciding on some aspect of their treatment. The Open to Options tool is designed to help “fine tune” their questions and help them feel more organized for their appointment, in hopes of maximizing the time they have with the doctor.

CSC: What are some of the most common questions you receive on the Helpline?

Laura: There isn’t a specific question, per se, that comes to mind. What’s common, though, is the underlying “theme” of the questions, which is often the idea of “normalizing.” People need to know that what they are experiencing is “normal.” That alone seems to decrease anxiety and the sense of isolation that people feel when going through cancer.

Sometimes even reframing their perceptions can be helpful. For example, someone may express feeling “depressed.” While this can be “normal” depression, it might also be grief. Sometimes it helps people to think about things in a different way that doesn’t seem as “diagnostic.”

CSC: What do you find most rewarding about working for the Helpline?

Laura: To me, it’s the fact that people share their story and feelings with me during such a difficult time. It’s also the fact that, whether it’s through sharing information, offering support, or just listening, I might have some sort of positive impact on a person’s cancer journey. In a nutshell…it’s the connection with people that’s most rewarding.

CSC: Can you tell us about a particularly rewarding moment from working on the Helpline?

Laura: It may sound simple, but the most rewarding thing was when someone said to me, “My anxiety level has decreased significantly after talking to you.” I think this statement underscores the importance of people having a place they can call into where they feel safe and where they feel heard.

CSC: What is your favorite piece of advice to give to those who call the Helpline?

Laura: One piece of advice that would apply to everyone would be to simply give themselves “permission.” Whether that’s permission to grieve the many losses that come with a cancer diagnosis, permission to ask a question multiple times until they really understand the answer, permission to feel OK about getting a second opinion, permission to care for themselves in a way they never have before (such as join a support group or set limits with others)….the list goes on. I think people begin to cope better when they give themselves “permission.”

CSC: Why is the Cancer Support Helpline so important?

Laura: Because it gives people access to information and support who might not otherwise have access to it, knowledge of it, or feel comfortable reaching out in person.

Hopefully we can not only educate people about resources, but also help to “normalize” what they’re feeling in such a way that it helps them feel OK about seeking out the support that can help them along the way.

CSC: Who should call the Helpline?

Laura: Anyone who is touched by cancer in any way.

About Cancer Support Community: The mission of the Cancer Support Community (CSC) is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. As the largest, professionally led nonprofit network of cancer support worldwide, the Cancer Support Community delivers a comprehensive menu of personalized and essential services including support groups, educational workshops and social activities for the entire family at more than 100 locations and online. To learn more, call the Cancer Support Helpline at 888-793-9355 and check out the CSC blog.

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The Cancer Journey: An Unplanned Detour to Your Life

About the author: Jeff Ward is a cancer survivor, no, actually a thriver, a Certified Professional Co-Active Coach, certified Cancer Coach, dad, husband, and lover of nature and an adventurous life. The mission of his heart-based coaching is to help and inspire those affected by cancer, particularly cancer survivors who got a wake-up call from their cancer, to move from surviving to living a thriving life. You can reach Jeff at his website at www.jeff-ward.com, or email jeff@jeff-ward.com.

Cancer has a way of sending us off the path of our normal lives. One day we’re going about our business, doing what we do to live a normal life. Then, through whatever circumstances and events, we learn we have cancer, and our lives take a major detour; totally unplanned, totally not welcomed, and for some, the path of our lives will never be the same. I know when I was diagnosed, my life took a sharp turn to a place away from what was until then my everyday life.

The following paragraphs describe the seven stages to the path that a typical cancer patient experiences. Some people may experience variations of the journey or minor stages not listed (such as denial), but for the most part, these are the major steps most cancer patients experience to some level. Caregivers go through similar stages, though with a different perspective.

This journey can also apply to those dealing with other life-threatening diseases or life-altering events.

  1. Innocence – This is the stage where everything is normal in your life, where there is indeed a sense of innocence, of a normal energy level. There is no sign of what is about to happen. You may have something not quite right that may warrant a doctor visit, but there is no hint of cancer at this point. Life is good. For me, there were no symptoms – just a routine blood test for a yearly physical.
  2. The Call – This is when you first hear the word “cancer”, perhaps after undergoing some tests. Your life is about to change and you feel it deep inside. You are entering a new world and have no idea what’s ahead. It’s like you are being forced off a cliff edge, out of your control. I almost fell off my chair when my doctor told me I tested positive for cancer. I did feel my like my life was out of control.
  3. Initiation – This is the stage where you are introduced to medical terms, tests, treatment etc. that you aren’t used to and not expecting. Your body seems out of your control. You feel bewildered, lost, physically fatigued from treatment and not sure what’s next. Physically you’re not the same. Talking with doctors, looking at treatment plans, etc. was entirely new and scary to me. I was very healthy pre-cancer.
  4.  The Pit – The Pit is the low point in the journey. You feel fear, anxiety, negative energy. You don’t know how you’ll get out of this, or if you even will. It is dark and lonely and unpleasant. You feel out of control on all levels – mind, body and spirit. This is also the place of greatest growth, where you need to let go of certain old beliefs or something that no longer serves you. Then allies and hope and something new can be welcomed in. I went into the pit fairly quickly after my diagnosis, as my dad had died of the same cancer years before.
  5. Allies – Allies are anything that provides support, help, sense of trust, or a sense of forward direction. They can be people, spirituality, things, etc. Allies are always there, but take hold in your life when you start letting go of old ways and let go of limiting beliefs from the Pit stage. As you rise out of the Pit into this stage, you begin to understand how you have changed from pre-cancer to now. Listening to those who cared about me help me to let go of money and practical concerns and focus on what was important to my healing.
  6. Breakthrough – This is a time when you have hope, when you feel like you have more control of your life, when things are moving forward. There is a renewed sense of hope and future here. You are starting to feel unstuck, that you are more in control of your life, and starting to do things that reflect that. When I started to heal from my treatment, and realized that I could come out of this ok, I started to feel more hopeful on beating cancer.
  7. Celebration – Imagine being on the medal podium, celebrating your achievement – this is Celebration. It is a place where you celebrate what you’ve been through, who you’ve become, what you can do from here. There is a sense of accomplishment, that the worst is over, and you’re a new person and have learned from and embraced what you’ve been through. You see a new you, a new life. There is hope and possibility from this place. When I got my follow up testing results and was found to be cancer free, I felt a tremendous sense of relief, and a sense that I’ve been given a new lease on life to live more powerfully.

Some of the benefits of understanding this unplanned journey include:

  • It really is a journey with twists and turns, not just physically, but emotionally and spiritually and mentally as well. There will be ups and downs.
  • Knowing where you are on this map can help you deal with some of the uncertainties and fears that cancer presents, so that you can live more powerfully through this experience
  • Being in touch with your raw emotions. Feeling and acknowledging (but not being stuck) where you are at deep inside is vital to your recovery.
  • You are not alone. Others have walked your path, and many more are on the wings ready to help
  • It can be a wake-up call to whatever you’ve been holding inside, to a new life
  • For most cancer patients, you will come out of this unplanned trip okay
  • You will learn about your authentic self, and perhaps be a changed person for the better

Healing, dealing with, and overcoming cancer involves more than just getting medical treatment. It also calls into play paying attention to the mind and spirit dimensions as well. While navigating the cancer journey is obviously unpleasant, it can be an opportunity to grow, and for those who survive, to push the re-set button to their life and perhaps be a changed person on a deeper, more authentic level.

So, where are you on your cancer journey roadmap? What have you learned about yourself on this journey? What will be different about your life? I’d love to hear your responses.

This cancer journey description is based on information from ©The Cancer Journey.

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Start with values instead of resolutions

About the author: Dr. Jill Mitchell is an oncology-certified, licensed clinical social worker with Rocky Mountain Cancer Centers in Colorado and  volunteers on the oncology advisory council for MyLifeLine.org. Jill has a doctorate in Medical Anthropology and has spent the past 10+ years counseling or doing research on people’s experiences living with cancer. Most recently, she has been piloting a post-treatment group intervention (based on some of the principles mentioned in this blog) to help distressed survivors find greater peace and vitality in life.

Welcome to 2015! As we enter the New Year, many people start it off with a list of resolutions. For some with cancer, the idea of having resolutions or setting goals (beyond just getting through treatment) feels overwhelming or unreasonable.

As an oncology social worker, I often see people who are afraid to make plans for life outside of treatment, while they are in treatment, due to the fear of having to cancel or postpone, or due to fear that they will disappoint themselves or others if they don’t complete what they plan to do. Even for post-treatment survivors it can feel daunting to set goals or make plans again because the world can feel so much more unpredictable or you may feel a little disoriented about who you are and what you want your life to be about.

So here’s a little exercise to consider for the New Year:

Instead of starting with a list of resolutions, goals or tasks, consider starting with clarifying what it is that you value most in life. To get at this, set aside some time and jot down your stream of consciousness reflections regarding the following:

  • When was the last time you felt most joyful and vital?
  • When do you feel most at peace or whole?
  • What gives you a deep sense of purpose in your life?
  • When do you feel most like the person you wish to be?
  • Think of the people you admire or appreciate most in life. Are there certain values that they express that you would like to develop more in yourself?
  • What do you most fear losing? And how might your fears also point to what you most value in life?
  • How do you wish to be known by the people you love, your community, or the greater world, now and in the future?

Once you’ve clarified and written down what it is that you value most, only then begin to write some specific goals that you can tie directly to your values. The key here is to start very small and doable.

  • What behavior might you engage in the next hour that would enact your value(s)?
  • What might you do before the end of the day that would enact your value(s)?
  • What might you do within the next week that would enact your value(s)?
  • What might you do within the next month that would enact your value(s)?
  • What might you do within the next six months that would enact your value(s)?
  • What might you do within the next year that would enact your value(s)?

For example, if one of your core values is to spend more quality time with your loved one, you might commit to calling them in the next hour to just let them know you’re thinking about them. You might turn off the TV and cell phones and plan to have a quiet dinner by candlelight. You might plan a hike or an evening out with them before the end of the week, etc.

Now this practice isn’t always as easy as it initially seems! Beware, that when you start to focus on what you authentically value, a lot of other voices (both inside and outside of your head) may start contradicting what you wish to support in yourself. For example, you might know that you authentically value taking time to nurture yourself through slowing down and committing to less, but just as you start to say no to other commitments that don’t fit your values, feelings of guilt and an internal voice that says “you’re not doing enough” may start getting louder! When these challenging thoughts and feelings come up (and they will!) recognize that they are a normal part of the process, that it’s okay to accept that they’re there, AND that you have some choice in whether you put your energy toward what you value or toward those doubting voices. If, at times, you neglect to finish what you had hoped to, instead of berating yourself, try inviting self-compassion and a willingness to recommit in the next moment or next day.  With compassion and patience you will likely find that this practice gets easier over time.

Ultimately, when we start with clarifying our values (versus just our goals), we foster flexibility with how we engage with and find fulfillment in the world. This flexibility in turn increases not only our resilience in the face of cancer or other unpredictable challenges that come our way, but also our joy and sense of vitality in the world.

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