Patients face 'the new normal' together

Thursday, June 21, 2001 • Vol 7, Issue 12

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Education, inspiration pace every-week support group

By BRAD BROBERG

Photo by Theresa Naujack

At a recent meeting of the Long Term Follow-Up Support Group, Alliance nutritionist Kerry McMillen shows patient Stacie Finster a list of sample diets with three calorie levels, while (clockwise from McMillen) patient Tom Smith, visiting nurses Kim Haggitt and Kirsten Midaley, patient Joe Conner, visiting nurse Rosie Copland, social worker Winona Hauge and nurse Judy Campbell look on.

Officially, the meeting was over. Even so, the conversation was just getting started.

Winona Hollins Hauge smiled as Edwin Sedan and Charlene Franklin, two cancer survivors who had just met, swapped questions, concerns and anecdotes.

Fostering connections like that - whether they last a day or continue week after week - is what the Long Term Follow-Up Support Group is all about.

Launched earlier this spring by the Seattle Cancer Care Alliance, the support group meets Thursdays from noon to 1 p.m. at the Alliance clinic. Hollins Hauge, a clinical social worker, leads the group. She is joined each week by a staff member from the Long Term Follow-Up Program and every other week by staff members from Oral Medicine and Nutrition.

'People dealing with same issues'

"We're going down a road none of us wants to be on," said patient Joe Conner, who joined Sedan and Franklin at a recent support group meeting. "We don't know what the future holds for us, so it's nice to meet other people dealing with the same issues."

When Dr. Mary Flowers, director of clinical care for the LTFU, set the wheels in motion to form the group, she wasn't thinking first of patients such as Conner, Sedan and Franklin. That's because all three live in the Seattle area and have regular access to the clinic as well as to an independent group founded by former Hutch patient Jerry Liberman.

What Flowers sought most was a way to reach bone-marrow and stem-cell transplant patients - and their caregivers - who live in other cities, states and countries and who return to the clinic only for one-year follow-ups, chronic GVHD clinic and for subsequent follow-ups every five years.

Before, no formal mechanism existed for those patients to educate and inspire one another. Now, the new support group enables patients to meet as part of their follow-up medical visits.

LTFU nurse Judy Campbell and nurse practitioner Corina Moravec attend every session to answer medical concerns.

Aurora Branvold, another participating LTFU nurse, tells patients, "There are no bad questions, so don't be afraid to ask. And continue to ask until you get an answer."

Quality of life

Besides medical concerns, the group focuses on quality-of-life issues. Getting advice from Oral Medicine and Nutrition staff as well as from other patients is invaluable to anyone struggling to adjust to life post-treatment, Flowers said.

"Patients think they have a lot of issues, but then they meet some people with bigger problems who are doing much better than they are in coping psychologically," she said.

It's also important for first-year patients to meet patients returning for their fifth, 10th or even 15th-year follow-ups, Flowers said.

"Recent patients come away knowing that they can get better, too," she said.

Flowers said patients who aren't experiencing problems appreciate the support group almost as much as those who are struggling.

"For them, providing hope for others is a way to give something back in return for the care they received," she said.

One of the most common - and troubling - issues patients face is fatigue.

"I'm so fed up with being as wimpy as I am," Conner said. "In the past, I've run marathons. Now, you couldn't get me to run across the street."

Weight changes caused by medication also can be frustrating.

"I used to wear 31-inch waist pants - now I'm 34 going up to 35," Sedan complained.

In some cases, such issues eventually may disappear. But in other cases, patients must adjust to what Hollins Hauge calls "the new normal."

She said patients need to acknowledge "this is what they can do. They have to rethink their goals to match the new normal. And it's very challenging."

The support group helps them adjust by teaching coping skills and showing them that they are not the only ones facing those problems, said Hollins Hauge.

Fear of crowds

For instance, Sedan, who received a stem-cell transplant only a year ago, said he fears being in crowds because his immune system is weak.

"I see a crowd of people, and I go the other way," he said.

Sedan asked Franklin, a long-term cancer survivor treated by the University of Washington, how she handles that issue - especially since she's a community college professor and is constantly among large groups of people.

'If I start feeling bad, I'll rest," she said. "I'll take a few days off."

Franklin said she's also grown increasingly fanatic about hygiene. "I think I've gotten to where I'm almost squeaky clean."

Besides its practical benefits, Conner believes the support group also makes an important personal statement to patients about the Alliance:

"You haven't forgotten us."

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