Cancer Survivorship

As we keep an eye on the information being disseminated on the web and in the news about cancer and its associated topics, a thread we see often implies that not enough money is being spent to "cure cancer". There are so many fundraising runs, bike rides, walks, vigils, restaurant promotions, etc... but people are still dying. When you are watching your loved ones battle cancer, it's hard to understand the progress that has been made. But there has been progress.

According to a report released by the Centers for Disease Control and Prevention and the National Cancer Institute (NCI), the number of cancer survivors in the United States increased to 11.7 million in 2007. To put that in perspective - consider the fact that there were 3 million cancer survivors in 1971 and 9.8 million in 2001. Great news! Regardless of whether or not a cure has been found, the numbers tell us that the treatments that are being tested in clinical trials around the world are finding drugs and therapies that are saving lives.

More good news that accompanies those numbers... Study findings indicate:

• Breast cancer survivors are the largest group of cancer survivors (22 percent), followed by prostate cancer survivors (19 percent) and colorectal cancer survivors (10 percent).
• Among all survivors, 4.7 million received their diagnosis 10 or more years earlier.

What this information tells us is that those screenings we keep encouraging you to have are working. And not only are people surviving - they're surviving longer. We've said it all along - but that's the proof in black and white. Screenings save lives.

Of course, more survivors mean an increasing need for support for after the battle. Survivors often deal with long-lasting effects of their treatments that can be uncomfortable, annoying, or down-right debilitating. When a patient and their family is in the middle of their treatment, it's hard to think past what they are doing right then, so the work that comes after - staying healthy, recovering and maintaining pre-cancer activity levels, and learning to accept the limitations that they may have to live with - is often nothing they want to discuss or even consider.

Support groups and information focused on survivorship are in demand more and more by patients and their families. We work to meet that demand in the support groups we facilitate and also with our licensed Social Workers on staff. They work with individuals to determine specific emotional needs, and find sources of information and support to make sure that transitioning into the new life post-cancer treatment is as smooth as possible. If you or someone you know needs some assistance and information about being a cancer survivor please contact us at 479-361-5847.

More information about cancer survivorship can be found on these websites:
Support groups in Northwest Arkansas can be found on our website here.
National Coalition for Cancer Survivorship
The Centers for Disease Control and Prevention has information, podcasts, and even the ability to send an e-card here.
The National Cancer Institute lots of information grouped by survivorship topic here and a long list of publications and resources here.

Some of the information in this posting was found in this press release on the National Cancer Institute website.

What about the Caregivers?

There is plenty of information out there about dealing with cancer as a patient. Magazines such as Cure and Coping with Cancer, and their accompanying websites, provide wonderful support to patients about the reality of life with cancer and follow them into recovery and survivorhood. There are support groups for different kinds of cancer diagnoses (see ours here), books to read, and products aimed at making a cancer patient more comfortable and better prepared to cope with their journey.

But what about the caregivers? Very often, cancer patients are dependent on spouses, siblings, children, or just close friends. Patients need help navigating the sometimes overwhelming array of new physicians and medications and the added scheduling burden of frequent visits to different doctors and medical clinics. Functions that used to be managed easily by the patient like doing laundry and mowing the lawn become highly scheduled and doled out to volunteers pulled from family members and friends. Behind all of this scheduling and dietary monitoring and pill-sorting and equipment renting is usually one specific person who takes on the bulk of the burden.

Caregiving can exhaust even the strongest individual very quickly. But the physical tasks that are required are not the only causes of fatigue. The emotional burden of maintaining a positive outlook around your loved ones or just having to be the "keeper of the information" can also be extremely tiring. If you are a caregiver don't forget to consider your own needs for down-time.

Take advantage of all those offers of help and be specific. Now is not the time to say "Oh, we're fine... thanks for your offer." If someone asks what they can do - give them a short list. Ask "What are you willing to do?" In some cases, leaving the house for anything other than a medical appointment can be daunting or even impossible depending on a patient's condition. Would they mind going to the grocery store with a shopping list for you? How about picking up your dry-cleaning and running a package by the post office? If they are offering to help - let them.

Something that often comes as a surprise to caregivers is the range of emotions that accompany the journey. It's not just the patient who has to deal with these feelings, but sometimes the caregiver has a harder time showing them. There is a mis-conception that a caregiver needs to remain strong and not let their emotions get the best of them. Here is some info from the National Cancer Institute that deals with this subject:

It's common to feel stressed and overwhelmed at this time. Like your loved one, you may feel angry, sad, or worried. Try to share your feelings with others who can help you. It can help to talk about how you feel. You could even talk to a counselor or social worker.

You probably have many feelings as you take care of your loved one. There is no right way for you to feel. Each person is different. The first step to understanding your feelings is to know that they're normal. Give yourself some time to think through them. Some feelings that may come and go are:

• Sadness. It's okay to feel sad. But if it lasts for more than 2 weeks, and it keeps you from doing what you need to do, you may be depressed.
• Anger. You may be angry at yourself or family members. You may be angry at the person you're caring for. Or you may be angry that your loved one has cancer. Sometimes anger comes from fear, panic, or stress. If you are angry, try to think of what makes you feel this way. Knowing the cause may help.
• Grief. You may be feeling a loss of what you value most. This may be your loved one's health. Or it may be the loss of the day-to-day life you had before the cancer was found. Let yourself grieve these losses.
• Guilt. Feeling guilty is common, too. You may think you aren't helping enough. Or you may feel guilty that you are healthy.
• Loneliness. You can feel lonely, even with lots of people around you. You may feel that no one understands your problems. You may also be spending less time with others.

Talk with someone if your feelings get in the way of daily life. Maybe you have a family member, friend, priest, pastor, or spiritual leader to talk to. Your doctor may also be able to help.
Here are some other things that may help you:

• Know that we all make mistakes whenever we have a lot on our minds. No one is perfect.
• Cry or express your feelings. You don't have to pretend to be cheerful. It's okay to show that you are sad or upset.
• Focus on things that are worth your time and energy. Let small things go for now. For example, don't fold clothes if you are tired.
• Remind yourself that you are doing the best you can.
• Spend time alone to think about your feelings.

At Hope Cancer Resources, our licensed social workers and counselors are able to schedule individual appointments with you and/or your loved one to help you cope with the varied physical and emotional challenges that accompany a cancer diagnosis. Don't hesitate to reach out to those around you. We're here to help.

Get Social, Feel Better

A recent article on MSNBC.com highlighted a study done by researchers at Brigham Young University on the importance of having social relationships as a way to maintain and/or improve your health. The article stated "People with strong social relationships were 50 percent less likely to die early than people without such support."

This is a pretty serious conclusion. And one that is very intriguing to those of us who are in the business of making sure people have the support they need to face cancer treatment and recovery. The patients we work with need the emotional support and encouragement that is expected from a friendship or family relationship. But unfortunately, not everyone has that kind of relationship available to them. Having no friends or family to turn to can create some challenges for our patients, even without the implications this article presents. That's what we're here for.

In addition to one-on-one meetings with patients and the assistance they provide to be sure their basic financial and medical needs are met, our social workers also facilitate support groups in Northwest Arkansas for those who need this kind of social support. Support groups provide a place to feel accepted, understood, and cared for. Exactly what we all need to be able to cope with our toughest days, let alone those who are dealing with something as life-altering as cancer.

Below is a list of support groups currently available in Northwest Arkansas.  If you have any questions, please don't hesitate to call us at 479-361-5847 and ask to speak to a social worker.

Been There is a local network of cancer survivors who volunteer to provide one-on-one support for newly diagnosed patients. Contact Christy Scarrow, LSW at 479-361-5847.

Blood Cancers Support Group meets at Hope Cancer Resources the 2nd Tuesday of every month at 5:30 p.m. Contact Jessica Minton, LCSW at 479-361-5847.

Breast Cancer Support Group meets at the Cancer Support Home in Bentonville the 2nd Monday of every month, 5:30-6:30 p.m. Contact Susan Earnest, RN at 479-521-8024.

Coping and Conversation is for anyone with a cancer diagnosis or their caregivers.  They meet at the cancer Support Home in Fayetteville each Wednesday at noon.  Call 479-521-8024 for more information.

Faithful Friends is a breast cancer support group that meets on the 3rd Monday of every month at 11:30 a.m. at Circle of Life Hospice in Springdale. Contact Dee Williams at 479-756-9172 for more information.

Prostate Cancer Support Group supports men diagnosed with prostate cancer and their partners.  They meet at the Community Church in Bella Vista the 4th Tuesday of every month at 4:00 p.m. Contact Dianne Krolikowski at 479-855-1126 for more information.

Reach to Recovery is a program administered by the American Cancer Society. They offer assistance to women undergoing breast cancer surgery. Contact Martha Green at 479-750-2493 for more information.

SPOHNC - Support for People with Oral, Head & Neck Cancer. This non-profit organization is dedicated to meeting the emotional, physical and humanistic needs of oral, head and neck cancer patients and their caregivers. Their support group meets on the 3rd Saturday of every month at 10:00 a.m. at the Fayetteville Cancer Support Home. For more information, contact Jack Igleburger at 479-876-1051 or 479-586-4807.

Survivor's Circle meets at the Cancer Support Home in Fayetteville on the 3rd Monday of every month. Call 479-466-5893 for more information.

Upbeats is a support group for women meeting the first Wednesday of each month at Papa Mike's in the Kingsdale Complex in Bella Vista. Contact Karen Willis at 479-855-6275 for more information.

One Patient at a Time

There are a lot of careers one can pursue that will provide a feeling of accomplishment. Success comes in many shapes and sizes, and there seems to be something for everyone. The staff at Hope Cancer Resources is pretty similar to a staff at any other company. We have staff lunches, we keep track of new babies and birthdays and family crises. And individually, we each have things that motivate and inspire us to wake up and come into work every day.

But as a whole, it's safe to say that hearing the stories of the cancer patients we help is a powerful factor in our dedication to the work we do. Everyone at Hope Cancer Resources - every single person - has something to do with helping cancer patients in Northwest Arkansas receive the support they need to make it through their treatments and be prepared for life after.

Some people get through treatments and are cured. They will never have cancer again. We might help them with a prescription during the treatment, or a few rides to their doctor appointments. Other people may not have a good prognosis, but still need help dealing with the financial, emotional, and logistical nightmare that a diagnosis of cancer can bring on a family. We might offer them counseling that helps them deal with their anxiety or help with how to create a living will. For all of these patients, the support we provide is key to their personal journey.

 We'll say it again: Success comes in all shapes and sizes. Sometimes it can't be measured in years. Sometimes, it's just finding a way to manage the time they have left.

Here's a recent patient's story...

"Mr. Smith", a 51 year old widower with a 16 year old daughter, suffered a seizure in the days leading up to Christmas. He found himself in the hospital Christmas morning, and was told he had lung cancer that had metastisized to his brain. A Hope Cancer Resources social worker met Mr. Smith on his first appointment at Highlands Radiation Oncology Clinic. It was quickly obvious that Mr. Smith had several concerns.

First, he was not going to be able to work any longer as a truck driver and would have to give up his commercial driver's license. Second, the various family members who had been giving him rides to the hospital and doctors' offices needed to return to work soon, leaving him no way to get to his appointments. In addition, he was to begin treatment the next day because of the seriousness of his condition, but he had no insurance. He was concerned about how he would pay for his treatments and prescriptions, some of which needed to be refilled within the week. Finally, with the understanding that his condition was terminal, Mr. Smith had questions about establishing a living will to give him some control over "end of life" decisions.

Our social worker oriented Mr. Smith to our services, and encouraged him to contact us or have his daughter do so if either of them "needed to talk". Our social worker then worked with one of our van drivers to arrange a ride for his appointment the next day, and ongoing appointments. They spoke with Mr. Smith's physician and nurse to confirm prescriptions and call in refills for those needing to be continued. Because Mr. Smith admitted that he is easily confused, our social worker helped him complete our application for assistance and explained the components of a simple living will and helped him complete one. They then contacted the pharmacy and paid for Mr. Smith's prescriptions while the nurse reviewed with him and his family his new medication regimen. Finally, our social worker referred Mr. Smith to Highlands' Patient Advocate for help with applying for Social Security Disability Income and Medicaid, and will continue to follow up with him to provide assistance as needed.

As he was leaving the clinic, Mr. Smith expressed his gratitude for our assistance and said "you guys have given me hope."

We measure our success one patient at a time.

March - Coming in like a Lion!

March is a big month around here. Not only is it Colorectal Cancer Awareness month (Have you heard? We're giving away free screening kits!!) it is also National Social Work Month. A whole month to appreciate social workers? You think that's over-doing it a little? Trust us - it's not.

There are an amazing array of employment opportunities out there for a shiny new social worker. There are jobs in counseling clinics, others focused on children's issues, some within governmental agencies, and some of them - like ours - require an ability to work with people who are truly desperate for a ray of hope during a journey they cannot begin to see a pathway through.

And they're not slackers either! In the last six months, the social workers at Hope Cancer Resources have:

• Provided distress screenings for 632 new patients. There are 365 days in a whole year... do the math. These folks are BUSY!!
• Helped 84 individuals purchase 417 prescriptions they would not have otherwise been able to afford.
• Provided 222 patients with financial assistance needs such as rents & mortgages, car payments and gas cards totaling over $61,000. That "busy" thing again... 
• Provided one-on-one counseling and support to 15 patients. Not all patients need this, obviously, but when they do, it's a vital component to the overall well-being of the patient and/or their caregiver.

A few comments from patients might help sum up the level of importance our social workers have in the work we do, and why we think they're so awesome...

"We thank you so very much for being there for us when we didn't think we had any hope."

"Your help will not only help me with expenses, but help alleviate some of the stress and tension caused by such worries. Thank goodness for organizations like yours, and caring people like you, literally saving patients from some of the stresses that can hinder recovery. Thank you!"

"My daily radiation in Fayetteville was over on Dec. 31 -- what a Happy New Year for me & my family! Your financial help with gas cards was a real help on keeping our gas expenses down, and truly apreciated."

"Thank you for helping me get my smile back!"
(From a patient we helped with dental problems that her cancer treatments caused)

"We received the generous gas cards today to help us get to Indiana for surgery. We just wanted to thank you for helping to make this difficult journey a little easier to bear."

We are so proud of the work our social workers do for our patients, and so grateful to the community that helps us make their work possible.  

Never forget that cancer affects us all... 

it's not about "them" - it's about "us".

Oncology Social Workers - healing and giving HOPE

Most of us would assume that the words "You have Cancer." delivered by a medical professional would make us afraid for our health. Physical limitations might follow, which would be fairly easy to predict. Fear of death is a given, and we would probably think of our family, and the burden that we might become on them while we are ill.

But even though you expect the physical and emotional results of the diagnosis, you may not know the stress that dealing with a diagnosis and the resulting treatment brings, can have a very real impact on the ability a patient has to heal, recover, and survive. In fact, patients who receive phycho-social support in the form of counseling and support group activities have a higher rate of survival than those who do not. For that reason, cancer centers all over the U.S. are starting to add a social work component to their treatment plans.

HOPE, Inc. employs three licensed social workers in order to provide assistance to cancer patients in northwest Arkansas. Starting with the initial visit a patient makes to Highland's Oncology Clinic in Fayetteville, a social worker is assigned to assess their needs for financial and emotional assistance, and to keep in touch with that patient to continue access to our services as they make the frightening and sometimes confusing journey through cancer treatment.

Even if a cancer patient is not being treated at the Fayetteville Highland's, they can still receive emotional and financial support from HOPE if they live in Washington, Benton, Carroll or Madison counties. For more information on our services please contact us at 479-571-4673 or visit our website at http://www.hopenwa.org/.