Cancer Experience Registry 
February Newsletter

Message from Joanne Buzaglo, PhD: 
Measuring Hope
I hope 2017 is off to a great start for all of you. With the beginning of anything new or different, there is often a feeling of hope for how it will turn out. Hope is something I have been thinking about a great deal lately, not just because it is the start of a new year, but about what it really means to have hope. Hope is a very important feeling for anyone who is impacted by cancer. It gives you a reason to keep moving forward, even when moving forward feels impossible. Recently, we have been exploring this topic to develop a measure for hope. We have interviewed Cancer Experience Registry members like yourself from around the country to find out what hope means to you. From these countless conversations with patients, survivors, and their family members, we've learned three main things.
  1. Hope needs to be anchored in what is really important to someone, whether that means living for a long time, hoping for a cure, living without pain or discomfort, being there for a child's graduation or wedding, or leaving a legacy through work or family.
  2. Hope is about looking to the future to see what it can hold for you.
  3.  Hope is the sense of having control over the things that really matter to you. For us at the Cancer Support Community, this idea is at the core of everything we do. Our support groups, programs, and resources are designed to help you and everyone in your life achieve what is most important to you.
Imagine if health care were tailored to those things that matter most to you. If this were possible, we would achieve truly patient-centered care.
In this month's newsletter, we are diving deeper into the topic of hope and what it means to you.  

A Q & A with Lillie Shockney on Being Anchored by Hope

Lillie Shockney, RN, BS, MAS is the administrative director of the John Hopkins Clinical Breast and Cancer Survivorship Programs. She is also the author of 14 books, including Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancer. Shockney leads retreats throughout the year for metastatic cancer patients and their caregivers.

Q: What does the word hope mean to you?

Lillie: It is something in the future that I am looking forward to experience happening. It is what guides me through difficult times in my life. It is always present. It is my anchor when I am in stormy seas.

Q: We have been interviewing patients and caregivers around the country in search of a measure for hope. How would you measure or quantify hope?

Lillie: How fulfilled someone feels regarding what they are hoping for. A measure of their level of joy associated with the fulfillment of that hope, including if the hope needs to be fulfilled in an alternative way.

Q: What relationship do people impacted by cancer have with hope?

Lillie: There is likely no closer relationship someone can have than their personal relationship with hope. I like to always remind patients where the origin of hope came from too. It is about the story from Pandora's Box. Hope cannot be lost. It does transition over time however, if we do a good job as clinicians in helping our patients and their loved ones understand the phases of hope.

Q: What relationship do you have with hope?

Lillie: If I were to write my memoirs people would wonder how I survived the many horrific experiences I have had in my life thus far. Getting cancer multiple times has been a cake walk compared to other things that I have endured. Without my reliance on hope and my faith, I wouldn't likely be here. So, hope keeps me grounded. It reminds me that no matter what, I can still have hope in some form. And, I also hope that hope itself has been teaching me throughout my life how to cope with very difficult challenges and still come out on the other side of them believing in hope as my true north. It is important to never confuse it with wishful thinking.

Q: Do you think there is any link between hope and physical well being?

Lillie: Yes. We know that when we are feeling hopeful about something our endorphins increase. T-cell production can also increase, and stress hormone levels decrease. Such physiology results in physically feeling better, and feeling less physical pain. What was thought to be impossible, suddenly becomes possible.

Q: What advice would you give to people who feel like there is no hope?

Lillie: I tell them about Pandora's Box, and how after all of the illnesses, diseases, and evilness flew out of it, what remained inside was one thing--hope. I ask patients a series of questions: " How much do you know about your cancer?" "How much do you want to know about your cancer?" "What are you hoping for?" "What are you most worried about?" "What gives you joy?"

Q: What have you learned about hope throughout the course of your career?

Lillie: I've actually written an entire medical textbook on it with the hope of teaching clinicians better ways to communicate. This will aid the patient in understanding what to expect, how to have realistic hopes, and how to also help our patients fulfilling certain hopes and life goals in alternative ways they find very satisfying.

Q: What is the importance of hope?

Lillie: Without hope, there is no future. We are stuck in the moment of right now. This minute. This second. We all need something to look forward to. Four years ago I stopped saying to patients, "I am so sorry that you won't be here to see your daughter walk down the aisle one day. I am so sorry we don't have a cure for your cancer." Instead I say early on in their care, "Let's develop a list of goals you want to achieve while receiving these treatments for your metastatic breast cancer. Some life goals you will likely be here to personally fulfill. Others may be too far in the future, like seeing your 10 year old daughter get married--so I will help you develop alternative ways to fulfill those hopes that you will find endearing and satisfying, such as having cards for your children that you have written in for each milestone that will be happening in their lives going forward. A few examples are graduations, getting their driver's license, weddings and even the day they have their own first baby. What do you want to tell your child on that day? You are still here instilling your love, motherly advice and wisdom in them. They will treasure seeing your handwriting and reading these cards you have left behind for them. I know because I hear from children who are now adults and they contact me to tell me how meaningful these cards have become for them. One 24 year old said to me, "Thank you for arranging when I was only 10 years old for my mother to always be in my life as my anchor, my lighthouse, and keeping me grounded. 

"Learning to be Hopeful through an Unexpected Challenge": An Interview with Karen Hurley

Karen Hurley is a licensed clinical psychologist specializing in hereditary cancer risk. She has counseled more than 400 individuals, families and couples with a variety of cancer genetic syndromes. Karen works closely with the Research and Training Institute here at the Cancer Support Community, where she has been vital to the success of our Cancer Experience Registry Breast Cancer and Stomach Cancer specialty registries. She is also closely involved in our study on hope.

Karen Hurley defines hope as a "very powerful force that can keep us moving forward when the future looks uncertain or bleak." For Karen, hope brings a feeling of joy or renewal. Karen's connection to hope is personal. As a professional in the cancer community, she hoped she would never get cancer. But, she did. Her hope was not fulfilled. "But as that hope was crushed, new ones came up. I could hope for having good days, or seeing a friend even when I wasn't feeling well. I learned I could expect good things, even if they weren't what I pictured in my mind," says Karen. "And, learning to be hopeful during a challenge that wasn't my choosing was very powerful." Her personal discovery of what hope means to her, and the intersection of her professional knowledge with her personal challenges, has given her new insight into the role hope plays in the cancer experience. "Hope keeps people motivated, and keeps them taking available actions," says Karen. "It has this buoyant quality when you have hope. It carries you, and that's something you really need throughout the cancer journey."

For people impacted by cancer, hope can actually impact the course of your cancer experience because of its influence in the decision making process. "When you're trying to make a decision about what is best for you, you don't really know how things will turn out," says Karen. "Hope allows you to make a decision, and then trust that however things turn out, you'll have the resources to adapt to the result." Further, hope can keep driving you to carry on, and keep you searching for solutions to help you live well.  "It's not like you make a decision, and then it's over. You live with, and adapt to the changes it brings to your life," says Karen. A few examples Karen cites are, "Maybe you can't eat your favorite foods, but hope helps you find out what you can eat. It means "Maybe I feel run down now, but I can get through it." Hope keeps you positively oriented with the future.

Karen also offers her expertise and advice on making decisions about your treatment, and how hope can affect communication between patients and providers. "Gather your information and support systems, and think about what your life goals are now, and how that decision will serve your life goals," she says. "You can hope for the best possible outcome, and then you commit to working to create that positive outcome. But, you trust that if things don't work out how you want them to, you can adjust." Hope can sometimes play a tricky role when having difficult conversations with your doctor, Karen explains. "Sometimes doctors will hold back on bad news, because they don't want to take someone's hope away. Or, they might push someone to be hopeful when they are still trying to process a loss or change in their life, and need to get through that before hope can arrive," says Karen.

When it comes to coping with uncertainty, a very common feeling among cancer patients, Karen says, "People will try to cope with uncertainty by not getting their hopes up, so that they won't wind up being disappointed. But, what that does is deprive you of that joyful feeling hope can give you."

Through her work on the Cancer Support Community's hope project, Karen has learned more about the historical influence of hope, and its complexity. "Hope has these very primal qualities that have motivate the human spirit," says Karen. "Hope is much older than cancer care, and is every part of our heritage. So, we are trying to understand something that is thousands of years old."
Questions of the Month:
 
This month we would like to hear from you about your relationship to hope. Please click here to answer our February 2017 Questions of the Month to help us learn more about you and your experiences. This month's questions are as follows:
  1. What kinds of things do you hope for?
  2. How  is what you hope for now different from what you hoped for at the time you were diagnosed?
  3. What helps you to maintain hope or makes you feel hopeful?
  4. What things cause you to lose hope or lessen your hope?
Your Responses to December's Questions of the Month

In last month's newsletter the Questions of the Month focused on self-advocacy. Here is what you had to say:

What moment or specific event triggered you to become an advocate, or enhance your advocacy skills in communicating with your treatment team?

"The moment I heard the words, "You have cancer.""

"I became an advocate when I lost my job (when diagnosed with advanced breast cancer). I found myself without a job, health insurance, income or anything and nowhere to turn. This was back in 1986, when cancer was still in the closet. It took me 24 years to pay off my medical debt. I didn't want to see anyone else have to go through this turmoil."

What skills have you had to develop or enhance to be an effective advocate?
              
"Listening to others as well as being able to make suggestions without being overbearing."

" Well I just won a seat on my local borough council, which is proof to me that I have the skills necessary to create a groundswell of public support for a personal, unifying agenda."              

What actions have you taken to reach out to other people who may share your experience? How has that changed your view of advocacy?

"...I have been involved with the patients at our clinic as I share my own experiences with them. You see, I am stage four but in remission and there is still hope for so many..."

"For the rest of my life I would feel remiss if I didn't reach out to others who face the same daunting diagnosis I faced at age 38. Three years later, I've had 8-10 women contact me after having been recently diagnosed with breast cancer. I feel "called" to listen with compassion to their story and empathize with their situation."

What have you done to advocate publicly for better cancer care or changes in public policy?

"Everywhere I talk to people and make sure they know that they are not alone."

"I have contacted my representatives in both the Senate and the House on a number of occasions to let them know my views on healthcare issues."

To see more responses to our questions about self-advocacy, click here.
Resources
 

Many Thanks from your Cancer Experience Registry Team

We hope that this newsletter is meaningful to you. Please feel free to contact us with any  questions or feedback at [email protected].

Until next time, take care and be well.

-The Cancer Experience Registry Team