By A.M. Sheehan
NORWAY — One thing those who have or have had cancer seem to agree on – you hear the diagnosis and little else.
“Everything moves so fast,” says Marilee Cooper of South Paris.
“The first time I had it,” says Karen Fillebrown, 65, of Waterford, “everything I had to do and everywhere I had to go, [Maine Medical Center, Central Maine Medical Center, Stephens Memorial Hospital,] it was mind boggling.”
Cooper was diagnosed with breast cancer. Fillebrown, esophageal cancer.
The ladies sit around a table at the Cancer Resource Center of Western Maine. Fillebrown is coloring an intricate design. Cooper is undergoing her initiation as a new volunteer.
On the other side of the table is Lois Grigg, 75, of Waterford. She, too, was diagnosed with esophageal cancer.
All three are in remission.
They are here to talk about the center.
Begun in 2012 with a dream of co-founders Barbara Deschenes, 59, now of Scarborough, Suanne Craib, 62, of Harrison, and David Wilson, 74, of Norway, the center opened in 2014 in a small room at the rear of the Stephen Memorial Hospital oncology building.
It is not, however, part of the hospital. About three weeks ago it achieved its nonprofit status as a 501(c)3. It is staffed by volunteers.
One of those volunteers is Bess Mahoney, who is quick to say what a “loving and nurturing place” the center is. But although they are readily in supply, hugs are for those who want them. For others, says Mahoney, “we give them space.”
Mahoney has never had cancer but is well acquainted with it.
“My mother, sister and both grandparents on my mother’s side all have cancer. My grandparents died from it.”
Before the center opened, patients had two cancer center options: go to Portland or Lewiston. Both offered support groups, information and activities.
“This area needed a place for patients to go,” says Patti Ann Douglas, oncology patient navigator at Stephens Memorial Hospital. “We have patients who don’t want to drive or do not have the resources to get to Lewiston [or Portland] – either no transportation or they are too ill.”
“So these three [Deschenes, Craib and Wilson] came to me five years ago and said, ‘We want a place in Norway.’ We met for a couple of years, did a community survey, visited the resource centers in Lewiston, Portland and one in Ellsworth and liked the one in Ellsworth.”
So they modeled the Norway center after Ellsworth, she says.
Douglas estimates about 20 people per week use the center during the two days it is open – Thursdays and Fridays.
But they all know there are many more people in the area who would benefit from coming … “if they knew about it.”
What can the center do for a cancer patient, their caregivers, family or friends?
“It turned me right around,” Fillebrown says quietly but firmly.
Fillebrown says she was always “a clown. I’m bubbly, I don’t act 65.”
But when she was hit with the cancer diagnosis, it “sent me down to the bottom. I had the fighting [cancer] ability but just not the get-up-and-go. I wasn’t working, doing anything.
“I became a person who didn’t go anywhere or do anything … I couldn’t seem to get out of my own way.”
But after coming to the center and attending its support group, she says, “I began feeling lighter, better, enjoying life.”
Fillebrown says she took on the mantra of “live life to the fullest, it might be your last day,” especially after she was diagnosed with a second bout of the same cancer.
Now in remission, she says she still “looks forward all weekend” to going to the center.
Grigg doesn’t take part in the support group but loves the other offerings at the center.
“When I started coming here I found everyone so positive. I think you need a positive attitude to fight this … being around others fighting the same thing helps.”
Grigg is not only a cancer survivor but a caregiver as well. Her husband had cancer and she says she knew what to expect.
“You know things that used to matter don’t matter any more.”
She says both the volunteer staff and other patients are so supportive. “I want to get out [of the house] because I feel much better with people.”
Both Grigg and Fillebrown live alone. Sort of. Fillebrown lives in an apartment with her dog. Grigg lives with her three cats.
Griggs human family is in Norwalk, Conn., she says. Fillebrown is fortunate to have her mother living below her with whom she visits daily.
“My mother is 85 … she takes care of me!” she laughs.
Fillebrown says that “you can come [to the center] in a sour mood and in two minutes you’re laughing.”
She says the support group talks about whatever they want to talk about – sometimes the week they had, sometimes the rough time someone is having, sometimes about things completely unrelated to the disease – they get advice and encouragement as well.
“It [cancer and its treatments] gets to you sometimes and you just have to sound off and get it off your chest.”
Both wish more people came to the center.
Craib, a retired physical education teacher at Oxford Hills Middle School, who has beaten a chronic form of Leukemia (CLL), says the area has it covered on the medical side “but we really need support people.” When she was diagnosed she says she couldn’t find others willing to talk.
Now she is on the board of directors for the center and can’t praise it enough.
“I even learned to knit there!”
In addition to the support group that meets the first Tuesday of the month from noon to 1:30 p.m. (bring a bag lunch!) the center offers myriad activities which it lists in the newspaper each month.
Such things as bird walks, cards and games, Stampin’ Up (making greeting cards), Community Cancer Cut and Sew, drawing, knitting and crocheting, beading and jewelry making, coloring for adults and walk and talks.
They have had Fly Making workshops for men as well.
The center offers complementary medicine for the mind and body, such as acupuncture, Reiki, massage, yoga and meditation; emotional support including support groups and visual journaling; and social opportunities such as crafts, knitting and fly tying.
Mahoney can’t wait to show of the items the center offers those who come: wigs or all styles “both real and synthetic hair,” along with a business card from Hair & Company for the care and styling of wigs; lovely hand-made assortments of pillows and cushions that help with healing mastectomies or cushion [chemo] ports; pretty cotton kerchief caps; little hats for children; cushions for seat belts for mastectomy comfort; cards; jewelry and more.
All made by visitors to the center and volunteers.
Needed to grow
Volunteers are very much needed, says Douglas, as well as more participants in the various programs.
“People still don’t know we’re here,” she says.
Additionally, there are plans to grow the center.
First, they need a new space. A space large enough to hold yoga, exercise and cooking classes. The current space is an L-shaped room about 15-by-20 feet that houses a small round table and chairs and a sofa, as well as the various items available to patients.
The current space belongs to the hospital and they can not be open in the evenings.
They plan on launching some fundraising efforts in order to realize these dreams. Currently Dechenes and Craib organize the ladies at the Norway County Club who do a fundraiser each year, which supports rides for patients to come to the center.
They would like to be open every day, says center coordinator Sherry Otterson, and hire a director.
Douglas is anxious to get more volunteers as soon as possible to be facilitators. She says they will train them but they should either have had cancer themselves or had someone in their family with cancer or been a caregiver to a cancer patient.
“We want people who have been there – rather than professionals – who can share their experiences and talk with others.”
These could be survivors, patients, neighbors, family.
“We want to start a men’s support group but need a man to lead it,” she continues.
She notes the center does not offer anything for children.
“Pediatric oncology is a specialty,” she explains, requiring specific training. But they welcome anyone older than 18.
“Thank God we don’t have enough [children with cancer] that we need to.”
Although Otterson has not experienced cancer herself, she has family “on both sides” that have.
Otterson says they would very much like to develop a list of volunteers who could give rides – even one-way – to patients to come to the center or get to a doctor’s appointment. A sort of telephone tree.
She can’t say enough about the local businesses that have become involved donating time and materials. She notes Lively Accents and Sew Orchid Design, which offer classes and materials to the center.
The center’s mission is clear: “We embrace anyone affected by cancer in a community that offers hope and caring through support, education and concepts in healthy living.”
But, perhaps, the words painted on one of its walls says it best.
Live every moment.
Laugh every day.
Love beyond words.
How to help
- Donations – Contact Sherry Otterson, 890-7063
- Rides/transportation occasional or on a regular basis – Contact Sherry Otterson, 890-7063
- Facilitators to work with support groups or take shifts at the center – Contact Patti Ann Douglas, 744-6173
- Space large enough for all the classes the center hopes to offer – Contact Sherry Otterson, 890-7063
For information about the support group call 744-6173.