This just in! It’s time for me to share with you my first of many exclusive interviews on the road to ACE 2011.
Earlier this week, I spoke with a clinical director of a cancer support center and two psychologists. I learned a lot about cancer’s potential psychological effects and am now sharing everything with you. Many thanks to my interviewees for helping us realize the difference we can make by supporting ACE!
About our Guest Interviewees:
Lisa Schneider, MS, LCPC, is the Clinical Program Director of The Cancer Support Center in Homewood and Mokena, Illinois. She has 10 years of experience working as a counselor and director and is also a certified yoga instructor with a special certification for teaching yoga to people with cancer and chronic illnesses.
Elizabeth Hletko, Ph. D, is a psychologist who specializes in treating adolescents and young adults. Her office is located in Skokie, IL.
Melissa Perrin, PsyD, is a licensed clinical psychologist and a profession speaker. She has a private practice in Evanston, IL.
Q: Cancer is such a life-altering diagnosis. What can patients do to cope with the diagnosis?
A common denominator in these comments is to be your own advocate, ask questions, and seek out support and counseling.
Perrin: The first thing is to get as much reliable information as possible from a reliable source. It’s okay to ask for a repeat. The other is that it is crucial to set up boundaries. People are going to come with stories that are terrifying and they will have advice that is meaningless or unwanted so it’s important that they have a way to say “thank you, but no thank you”. Another way to get boundaries is by talking to an objective person—psychologist, genetic counselor, rabbi, priest…someone who is objective enough that they can speak with them honestly.
Schneider: First and foremost, be your own best advocate. Ask questions, read specific, current material about your particular stage and illness and don’t be afraid to ask questions. In order to feel confident about treatment it is always important to get a second opinion or to talk thoroughly with the physician. Cancer is often generalized in our society but really the cancer is actually very unique for every individual- a person should try to remember that age, physical health, nutrition, social support and a will to live are all components that are within one’s control and can be harnessed to promote healing.
Hletko: Individuals diagnosed with cancer are impacted physically and emotionally. While oncologists can treat the cancer itself, understanding the impact of the disease requires a team. Dealing with genetic risk helps patients understand their disease, providing agency at a time of chaos. Psychiatric support is particularly useful in dealing with the anxiety and depression that can accompany diagnosis and treatment. A team approach allows the person to have these various needs addressed in one place.
Q: The Auxiliary of NorthShore University HealthSystem at Evanston & Glenbrook Hospitals is working with ACE to fundraise for Dr. Gustavo Rodriguez’s ovarian cancer research and to start a clinical trial program that focuses on risk assessment and prevention. Please comment on the psychological significance of such a program on a patient.
“This will give hope to countless women in the community”
Perrin: Anytime a treatment plan is formulated specifically for the individual, the individual feels better cared for and they feel understood. And that means that they can trust their caregivers more. Trusting one’s caregivers more means that the individual will be more likely to have a better outcome, at least psychologically and spiritually, and we do know that there’s a direct correlation between a healthy, safe, trusting feeling and getting better. The body is able to respond when the psyche is comfortable and feels it’s in a trusting environment.
Schneider: I believe that any attention given to ovarian cancer is important and beneficial. Women who have been diagnosed with this illness are often struggling with the lack of current information and screenings available to test for this disease. The emotional toll that this particular type of cancer takes is directly related to the lack of control that most women feel about the information available about prevention and about how to more easily detect the symptoms that they feel within their own bodies. Every person reacts differently to chemotherapy and radiation so try to keep an open mind about receiving these types of treatment.
Because of the vagueness of symptoms for ovarian cancer, it is common for women to then have to deal with the emotions of anger, anxiety and fear about this type of cancer occurring without a reliable way to detect or diagnose. I have never met an ovarian cancer survivor or family member who didn’t wish that more could be done, earlier, to have prevented the cancer from being diagnosed or diagnosed at an earlier stage. A clinical trial program tells me that the hospital is dedicated to being on the forefront of a disease that rarely makes headlines. This gives me hope and will also give hope to countless women in the community.
Hletko: The best treatment for cancer is to prevent it. Helping people realize their risk factors is useful if you offer them avenues to change the likelihood of diagnosis. Many people are anxious about the idea of cancer, so helping people understand they have some control does much to alleviate anxiety.
Q: Finally, family and friends of cancer patients have a lot on their plate as far as figuring out what role they need to take to best help the individual with the diagnosis. At the same time, they have to work out their own reactions and emotions. What is the role of family members and friends during the time of diagnosis, treatment, and recuperation?
“ There will be stations of sustenance where it’s not going to be all about the cancer”
Perrin: Family members and Friends. There are two things that are crucial. One is that they have someone to speak with. The person with the diagnosis has more than they could possibly think about. It’s important, initially, to react with someone other than the person with the diagnosis. It’s important to connect with the individual who’s received the diagnosis. Set up some ground rules. Agree on how you can talk about this. Can we agree that you’ll ask me for help? If I see that you need help, am I going to ask you if you need help? In other words, set up some ground rules.
Let me start again, it’s a marathon. It’s a marathon for the individual with a diagnosis and the care team, whether it’s staff or family members. Part of being on a marathon, one has to remember that there will be stations of sustenance where it’s not going to be all about the cancer. And within that, is a verbal agreement between the patients and the caregiver. Is it okay to check in with you if I see that you need help? Sometimes patients don’t want to be checked- in.
Schneider: Family and friends are vital component of a person’s recovery from cancer care but they too deserve to have support and space to talk through the impact of seeing their loved one face a life threatening illness. If caregivers make time for themselves to work through the emotional impact of the illness then it is likely that they will feel stronger for their loved one. I often think about the instructions given while riding an airplane, “when flying with small children, please put on your own oxygen mask before helping your child”, even though our natural tendency is to rescue a loved one when they are in danger it is important to remember that without self-care you can not really be of much help to others. I always encourage loved ones to share in the emotional aspects of the cancer journey- everyone gets scared, everyone feels anxious, everyone hopes for the best- these are human responses. Sharing the experience, regardless of what happens, is always better than family members doing it alone and apart from the person with cancer.
Hletko: Appoint a person to act as organizer and be specific with offers of help. Coordinating efforts on meals, transportation and laundry is far more useful than ‘being there’ in a general way. Also, allow your loved one to mourn. Although cancer is not a death sentence, it is a significant change and everyone needs time to understand what that means. Finally, get support for yourself. Caretaking can be exhausting. Support groups are a great way to meet other people who have been there too.
Q: Any final thoughts?
Schneider: Breast cancer gets a lot of media attention in our society and though it is needed to help find a cure, it is often difficult for people with other types of cancer to feel like someone is also paying attention to their type of cancer. Reducing feelings of isolation and helplessness is very important consider for someone who has cancer. Because cancer is always an unwelcome guest in the body, a way to provide support is not only through treatment but in also taking very good care of the body to help it rally against these cancer cells. It is never too late to eat well, do gentle exercise, teach the mind to calm and stay in the present and release pent up emotions and old patterns that no longer serve you. I think this is where hope lives. Fundraising allows hospitals and wellness centers, like the one I work for, to extend care beyond the basic treatment for cancer. It is this vital funding that creates resources for treating the whole person before and after they have their diagnosis or treatment.
It is obvious that cancer itself is a battle, but like Dr. Perrin says, “there will be time of sustenance”. It is important for caretakers to take the time to cope and it is clear that the goals of the new clinical trial program will only inspire wellness and recovery. Health-care is best when it’s personalized, and initiating programs like the one ACE hopes to help fund will allow NorthShore University HealthSystem to be on the forefront of preventative medicine.
That’s why in August, remember, you won’t be just bringing exceptional art home, you will be helping patients and their loved ones get one step ahead of their disease.