H.O.P.E. Blog

Kvetching Order Helps You Communicate

caregiver communicationBy Jean Lillquist

It’s safe to say that if you’re reading this newsletter you have experienced cancer, either that of your own of in a loved one. Despite society’s increasing familiarity with the disease it is still a difficult topic to talk about, especially with a cancer patient. Many suggestions have been made as to the “right words to say,” and in fact, that will be addressed here as well. But first, courtesy of an article by clinical psychologist Susan Silk that was published several years ago in the L.A. Times, here’s a slightly different take on the problem. She doesn’t tell people what not to say, but whom not to say it to.

Silk calls it the Ring Theory.

She says to draw a circle and put the cancer patient’s name in the center of it. Then draw another circle around this one, and write the name of the person who is next closest to the patient. Draw another ring and include another name. In these rings closest to the patient are usually found spouses and other close family members. Keep drawing rings and adding names; possibly more distant family members, close friends, etc. When you’ve finished, you have what she calls a “Kvetching Order.”

Now here are the rules.

The person in the center can say anything he or she wants, to anyone, anywhere, at any time. “Why me?” “Life isn’t fair.” “I’m tired of feeling terrible.” Anything. That’s the one payoff for being in the center ring. Everyone else can say these things too, but only to people in larger rings. When you’re talking to someone in a ring smaller than yours, one that is closer to the person in the center, your goal is to help. Before you say something, ask yourself if it will offer support or comfort. If not, don’t say it. Often the best thing you can do is just listen. Do not offer advice. Instead, say “I’m sorry, this must be really hard for you.” Or, “Can I bring you a pot roast?”

If you want to scream or cry or complain, if you want to tell someone how upset you are, that’s ok, just make sure it’s someone in a ring outside of yours. “Comfort In, Dump Out.” Complaining to someone in a smaller ring than yours does no good and can only add to the person’s aggravation. On the other hand, going out of your way to be supportive to people in the smaller rings, especially those closest to the patient in the center, could do a world of good for them and the patient.

This Ring Theory is widely known and used. One patient of the author found it useful to tape to her refrigerator. If nothing else, it’s a tangible reminder of the best way you can help people and the people who need it most.

And now, what to say and not to say to the cancer patient.

You’ve most likely read or heard many of the following comments.

  • Don’t say, “I can’t stop crying. I’m up all night worrying about you.” All this does is give the patient more to worry about him or herself.
    Instead, say “I feel terrible you’re going through this. Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.”
  • Don’t say, “Just be grateful you don’t have (insert another form of) cancer.” People don’t need to hear that things could be worse; comparing cancers is no help.
    Instead, say “Tell me about your (whatever type) cancer, if you’d like. I’d like to know more about what you’re going through.”
  • Don’t day, “You’re so strong.” Often this makes the patients feel as if they must continue to convey that impression when what they really need is to be able to admit feelings of fear and vulnerability.
    Instead, say “I admire how you’re handling this with such grace.” This leave the door open for the patients to admit to having bad days.
  • Don’t say, “If there’s anything I can do, just let me know.” This is probably the most commonly uttered statement and probably the most ineffectual one. Unless it’s said to a caregiver, all this does is put the burden on the patient of what to ask the person to do.
    Instead, say something specific, such as “I’m going to make a meal for your family next week. I’ll bring it on Tuesday unless there’s a better day. I’m making lasagna unless there’s something else you prefer. Let me know if there’s anything you don’t eat.”
  • Don’t say, “I know how you feel.”
    Instead say “I can’t imagine how you feel.”

This article is reprinted from H.O.P.E. Lifeline (May, 2016) - monthly newsletter distributed by H.O.P.E. Click here to view the full newsletter.  If you would like to receive the newsletter by e-mail each month, you may subscribe today (no cost or obligation and you may unsubscribe at any time).

James Younger Gang - Train Robbery for Charity

steam into history logo

This gang of American Outlaws was well known in the 19th century. The group included the notorious Jesse James and the Younger brothers. Their infamous group will be robbing the train for trinkets and jewels (provided).

They will also be robbing for actual donations that will go to H.O.P.E, local to New Freedom.  H.O.P.E. is a volunteer-driven, non-profit organization founded in 1994 dedicated to providing high-quality, hands-on and heartfelt assistance and support to cancer patients and their families. Come out for a good time and a great cause!

When:  Saturday, July23rd... 11:00, 12:30 & 2:00

Get all the details and purchase your tickets here.

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A Special Celebration of Special People

nona stan brownBy Jeff Hoffman

Not too long ago I had an opportunity to take my then five-year-old grandson hiking. We set out on the trail, taking in all of nature’s beauty. Somewhere along the way, he began to show concern about being lost. I explained that we weren’t lost and that, in fact, we would be back to our car soon. Sure enough, we came out of the woods right where we had departed. He was amazed that we had traveled in a full circle. Sometimes, life has a way of making us travel in a full circle. Just ask Stan and Nona Brown. On May 5th, H.O.P.E. will Scott Brownrecognize them as the recipients of the 2016 Scott Brown Memorial Seeds of Hope Award. It was 11 years ago that H.O.P.E. had approached the Browns seeking approval to honor their son, Scott, who had lost his battle with cancer.

The Scott Brown Memorial Seeds of Hope Award was created to honor Scott Brown who was Vice President and Manager of Fruit and Vegetable Operations at Brown’s Orchards and Farm Market, and who lost his battle with cancer in 2005. Scott not only planted seeds for a living, he planted seeds of hope for the future.

Each year, H.O.P.E. recognizes an individual, business, or organization that has emerged as a devoted, compassionate supporter of cancer patients and their families.

Voices For HOPE BanquetThe Voices for Hope Benefit Banquet started out with a modest goal: to honor Scott Brown's legacy and to raise H.O.P.E.’s profile in the community. Since that time, H.O.P.E. has recognized many deserving people in our community who routinely step forward and show compassion and care for cancer patients and their families. In the ensuing years, H.O.P.E. has raised thousands of desperately needed dollars that go toward helping cancer patients.

However, the banquet has always been about much more than just raising money. It is about Briggs VFH Speaker 2016inspiring people. Year after year, H.O.P.E. has managed to feature speakers with both interesting and inspirational life stories. This year is no exception as Retired California High Patrol (CHIP) Sergeant Kevin Briggs will share his story of battling cancer and saving lives. Known as the Guardian of the Golden Gate Bridge, Briggs has been credited with saving more than 200 lives of people seeking to jump from the bridge.

The event will be held at a new venue this year -- the recently opened Wyndridge Farm in Dallastown, PA -- on Thursday, May 5, 2016. The evening will begin at 5:30 p.m. with a reception and silent auction. The dinner and program will begin at 6:30. Tickets are $60 per person (table of eight at $420 if reserved by April 14).

This year will be a memorial evening as H.O.P.E. recognizes Scott’s parents (Stan and Nona Brown) as the 2016 award recipients. The same lessons they taught to Scott and his siblings, Linda and David, such as their faith in God, love of family, and commitment to their community, have served as an inspiration to all of those who know them.

Life is full of challenges. Some moments may be painful while others may be full of joy and happiness. H.O.P.E. recognizes that each day a person chooses to fight cancer, they honor the legacy of Jeanette Cartwright, Scott Brown, and countless others who have touched our lives.

This article is reprinted from H.O.P.E. Lifeline (April, 2016) - monthly newsletter distributed by H.O.P.E. Click here to view the full newsletter.  If you would like to receive the newsletter by e-mail each month, you may subscribe today (no cost or obligation and you may unsubscribe at any time).

Palliative Care Helps Patients and Their Families Deal With Major Illness

doctors palliative care meetingBy Jean Lillquist

A few years we provided some information in a newsletter on palliative care, a method of care that focuses on improving a patient’s quality of life. Officially approved as a medical specialty in 2007, this relatively new method of treating serious illnesses is unfortunately not well understood by the general population, who misinterpret it as hospice care. It is anything but.

Palliative care (also known as ‘symptom management service’) is provided by a specially trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with regular curative treatment. Palliative care teams include doctors, nurses, and social workers, and often also include spiritual advisers, dietitians, occupational and physical therapists, and pharmacists. It involves the patient and his or her family, and meetings can take place in the doctor’s office, the hospital, or even at home. A patient can see a palliative care provider just once or on a regular basis.

Some suggested questions to ask during an initial visit to the palliative care provider include:

  • What is my diagnosis?
  • What are my treatment options?
  • What are the side effects of these treatments?
  • What do you think will happen if I choose not to treat my illness?
  • How long do you think I have to live?
  • How soon do I need to make a decision about which treatment to use (or not to use)?
  • How will my illness affect my loved ones?

Notice that these questions focus not only on being treated. Depending on the severity of the patient’s illness the palliative provider will help the patient weigh his or her options. To this end the following topics will probably be addressed:

Treatment—How well is it working? Is it better to continue it toward a goal in the future (seeing a child graduate) or stop or limit it to focus on quality of life?

  • Side effects—Palliative care specialists can prescribe medications to deal with pain or unpleasant side effects of treatment medications.
  • Emotional and social challenges - The team can help the patient and family members talk about feelings and solve problems.
  • This can range from helping to reduce stressful family situations to finding transportation or resources to help pay for medicines.
  • Spiritual concerns—Often the patient and family experience anger and resentment about the illness and can benefit from discussing those feelings with a chaplain or spiritual adviser.
  • Goals and dreams—It helps to talk about short– and long-term goals with people who can not only help the patient prioritize them but help make them possible.

The website www.lancaster.pa.networkofcare.org provides excellent information about palliative care, as well as personal stories. Following is one from a young woman who was 22 at the time she wrote this.

After having chemotherapy and radiation treatments for non-Hodgkin’s lymphoma, I was in remission and thought I was finally going to be okay. But then I got an infection, and my immune system couldn’t handle it. Soon I was in terrible pain. When I was moved into a palliative care unit in a hospital, I thought it was because I way dying. But eventually with treatment my pain went away and I was able to go back to living a normal life. My palliative care doctor and her medical team were amazing. They did so much more for me than just give me medicine—they visited me, shared music, and even taught me guided imagery. Most of all, they gave me hope.

Palliative care is available at Memorial Hospital in York and through Wellspan. A patient can learn more from his or her doctor and can also call Wellspan at 717-851-3467.

This article is reprinted from H.O.P.E. Lifeline (April, 2016) - monthly newsletter distributed by H.O.P.E. Click here to view the full newsletter.  If you would like to receive the newsletter by e-mail each month, you may subscribe today (no cost or obligation and you may unsubscribe at any time).

Writing Your Woes Away

writing for therapyWriting, journaling, keeping a diary, whatever label you attach to putting your thoughts down on paper—it’s a surefire way to help give form and meaning to your life. The act of writing itself is a means of organization and introspection, and as you write you uncover things about yourself you had either forgotten or hadn’t ever realized.

You say, but I never liked to write; I always hated to write in school; no one ever taught me how to write; it’s boring; it takes too long; I don’t have anything to say.

To the contrary, everyone can write.

Writer Sharon Swanson runs a journaling program at Duke University Hospital, and she tells her participants that they can write about anything in their journals. Here are some of her ideas:

  • Write a gratitude list
  • Doodle
  • Collect cartoons or quotes you like
  • Write to-do lists
  • Keep an ongoing list of questions to ask your doctor
  • Write others’ poems that move or inspire you
  • Write your own poems
  • Write passages of scripture
  • Write funny things about your family
  • Write your hopes and dreams

Do you think you’d like to join other H.O.P.E. friends in a writing group? If so, give us a call so that we can get an idea of who is interested. Stay tuned for further details.

This article is reprinted from H.O.P.E. Lifeline (April, 2016) - monthly newsletter distributed by H.O.P.E. Click here to view the full newsletter.  If you would like to receive the newsletter by e-mail each month, you may subscribe today (no cost or obligation and you may unsubscribe at any time).



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