Young Couples Facing Cancer Meet Distinct Challenges
CancerWise - 2008-12-01
By Bayan Raji
Some couples that pledge to stand together through thick and thin, sickness and health are lucky enough to go through nothing worse than the flu. But being married to someone who is diagnosed with cancer can be a different story.
Spouses of cancer patients face a difficult job. They often have to shoulder dual roles and take charge, but at the same time they often experience feelings of helplessness because they aren’t able to take away the pain.
Diagnosis brings questions
Gaspar Mir, 38, felt overwhelmed when his wife was diagnosed with colon cancer in June 2002. He says he wanted to take care of her every need but felt conflicted because he couldn’t remove the cancer.
“I didn’t know what to do. I didn’t have any answers,” Mir says. “If you don’t have the answers, you can’t do anything. You don’t know what to do; you’re stuck.”
At the time of his wife’s diagnosis, Mir says, they both had a lot of learning to do. Fortunately, a friend who is a proctologist recommended good doctors and ways to find information.
Support may be difficult to find
Because his wife’s cancer is particularly rare in young women, Mir felt frustrated by the lack of support available for people in their age group going through the same thing.
Life has slowed down considerably for Mir in the past several years, but he says he’s unable to forget the fear and anger cancer brought into both of their lives.
“It’s incredible to me that she’s six years out, but that doesn’t take away the anger that the whole thing happened anyway,” he says.
After the couple’s experience with cancer, Mir signed up for Anderson Network’s Patient and Caregiver Telephone Support Line.
“I’ll help in any way I can,” he says.
Much must be learned
Spouses of cancer patients may experience an array of symptoms, including depression and fatigue. While there are support groups and systems designed specifically for the cancer patient, partners usually are left to cope on their own.
Mathew Herynk, Ph.D., an instructor in the Department of Thoracic/Head and Neck Medical Oncology at M. D. Anderson, was his wife Kara’s primary caregiver after she was diagnosed with cancer in early 2005.
After the diagnosis, Herynk encountered a significant learning curve when it came to understanding cancer and the variety of treatments available.
Age an issue
As he sought help and understanding, Herynk noticed most support groups for cancer spouses were geared toward older people.
“People in the support groups were the age of my parents or grandparents and were dealing with completely different issues,” Herynk says.
Feeling that a large chunk of the population was being overlooked, Herynk wanted to address issues younger people must deal with, like trying to juggle kids, work and responsibilities as a full-time caregiver.
“Caregivers have issues too,” Herynk says. “They’re neither more nor less important than the patients’, but they are real and need to be addressed.”
Internet offers education, support
An idea came to Herynk after he browsed an Internet support group for people in a situation similar to his. He decided to create, with several close friends, the Young Cancer Spouses Internet site.
The Young Cancer Spouses site acts as an informal adviser on financial, relationship and personal issues, but its goal is to shorten the steep learning curve people are faced with after a cancer diagnosis.
“My goal going into this was to help 10 people shorten that curve,” Herynk says. “We have succeeded that far and beyond.”
Spouses have needs, too
Drawing on his experiences to determine what people would want from an Internet site, Herynk included practical information that clinicians may not tell patients. For example, the site discusses what to pack for an overnight hospital stay and the headaches some patients have before their hair falls out as a reaction to treatment.
A message board provides space for spouses of cancer patients to ask for or give advice or vent their frustrations, and a discussion board encourages real conversation, which many spouses of cancer patients feel they lack after cancer takes over their lives.
The focus should be on the patient, Herynk says, but the spouse needs to remember to take care of his or her basic needs as well.
“Take care of yourself; you’re no good to anybody if you can’t get out of bed,” he says.
CancerWise - December 2008
- Landmark Gift Bolsters Prevention Efforts
- Q&A: Cancer Prevention and the Duncan Institute
- Young Couples Facing Cancer Meet Distinct Challenges
- Whole-Brain Radiation Affects Learning, Memory
- Hepatitis B May Up Pancreatic Cancer Risk
- Tamoxifen Cuts Time to Breast Cancer Detection
- Music Therapy Inspires Cancer Patients
- Internet Videos Offer Support, Information