Coping with Sarcoma

From M. D. Anderson Sarcoma: What Can You Expect, part 5
Date: February 11, 2008
Duration: 05:16

Narrator:
After a diagnosis of cancer, each patient and family member must find ways of coping with the disease and its treatments.

Tami Barnes:
I think it’s something that you have to do. You don’t choose to do. And people all come with their qualities into the experience, and I tell people the “coping fairy” doesn’t come and magically give you new coping skills to deal with this, so whatever coping skills you’ve had in the past and how you’ve dealt with difficult situations in the past is how you’re going to deal with it now.

Narrator:
The process of learning to cope with your diagnosis and treatment may actually begin right in the waiting room of the Sarcoma Center. Because of the numbers of patients who are treated here, there’s always a good chance you’ll have to wait when you come for your appointments. It’s an exercise in patience, because more often than not, there’s a long wait to get it to see your health care team.

Tami Barnes:
Most of the time there’s a long wait, when you’re waiting to see the doctor, and usually there’s waits with every thing that’s done, whether it’s a diagnostic test or a lab, again because of volume and because of emergencies that come up. And the other thing is that the doctors here in this Center are so good about spending time with the patients and families.

Erica:
With Dr. Benjamin, you have to wait. Sometimes we waited four hours to even get into the room, and then we would wait a couple of more hours before he’d come to see us. You have to sit there and be patient for him, but when he gets to see you it’s worth it. He cares a lot about his patients. You just have to be patient, because you do wait a long time, but you wait for everything at M. D. Anderson. It’s basically a waiting game.

Narrator:
Waiting becomes part of the process that most patients have learned to contend with.

Tami Barnes:
But when it’s your time, we’ll focus on you, and we’ll give you all the time that you need, and if that’s 30 minutes, an hour or five minutes we’re there for you, so be patient and just know that waiting is something that’s gonna happen.

Narrator:
M. D. Anderson provides a number of support services and resources for patients and their families. M. D. Anderson chaplains, representing a broad range of religious beliefs and denominations, are a great source of strength to patients and families. Chaplains are available for counseling and support 24 hours a day, 7 days a week. Also, Advanced Practice nurses, who specialize in psychiatric counseling are available. Many patients take advantage of this kind of counseling. The Dept. of Volunteer Services provides a variety of activities and resources, including the Beauty and Barbershop, where hair and head care services are provided at no charge. Social Workers provide free short-term counseling, information on support groups, community resources and other special programs.

Tami Barnes:
Sometimes you need somebody outside your social network that you can talk to and really feel like you can be honest with and say things that maybe you wouldn’t want to say to your close family members.

Narrator:
The Anderson Network is an organization of current and former cancer patients who provide support for each other. Through the Anderson Network, you can be linked up with other patients with your same diagnosis. The Network also sponsors two Hospitality Centers, one in the Main Building and one in the Mays Clinic, where patients can drop in for a cup of coffee or a visit. The Place…of Wellness provides an environment where people touched by cancer may enhance their quality of life through programs that complement medical care and focus on the mind, body and spirit. Programs include yoga, tai chi, art, guided imagery, nutrition classes and more.

Tami Barnes:
It’s stressful to the entire family, because you don’t go through this disease by yourself. It’s not a disease of the individual…it’s a disease of the entire family…and sometimes extended family members and friends. I’d like to write a book called, ‘It’s Not Over When It’s Over’, because when you’re on treatment you have a love / hate relationship with your treatment. You hate the treatment. It makes you feel sick. It interferes with your life, and you dread going to it. But then once you’re off treatment, you’re scared because maybe that’s the only thing that’s keeping the disease away, and so every time you come back in for a checkup, it’s very scary, and there’s lots of anxiety that goes along with it, and a lot of patients say they have some behavioral changes at that time, and they’re difficult to live with, because they’re so nervous and scared.

Tami Barnes:
All I can say it from my experience over time it gets easier and easier, but it’s something that’s always there. It’s always a part of you. But it has its place, and you have to be prudent about your health forever. But the only point of going through treatment was to be able to not just survive but to thrive in your life. And to really live it and enjoy it. And that would be the goal.