Healing Beyond the Body volunteers are heartfelt companions on cancer journey

volunteer
Left to right volunteer Ingrid Camhi, social worker Dhara Moddel and volunteer Farshad Ghasemi.

“I like to bring a little joy,” says Dee Simpson. The 72-year-old personal trainer and former documentary filmmaker is one of 130 Healing Beyond the Body volunteers whose sole focus is the emotional and information needs of patients at The Princess Margaret.
 
What do they talk about? Whatever the patient wants.
 
“Throughout the years, I’ve become better at picking up cues from patients,” says 24-year-old Farshad Gashemi, a clinical research fellow who, for the past five years, has been taking time out from his 80-hour work week to sit and talk with patients. “Some don’t want to talk about hospital stuff at all, they just want to be distracted. So we’ll chat about what they did on the weekend or their grandchildren. Other people want to tell me about their story, their cancer journey, their hardships.”
 
It was the unique opportunity to interact directly with patients that brought Farshad to the Healing Beyond the Body (HBB) program, as well as his personal experiences with cancer. A number of his relatives and close family friends have been affected.
 
About a third of HBB volunteers are cancer survivors or directly impacted by cancer through a spouse or loved one. One volunteer, Maria Filosa, a 48-year-old survivor of head & neck cancer, is now offering support to head & neck patients after surgery.

"As a former patient who underwent invasive treatments for head and neck cancer, volunteering for over six years with this same patient population is both a rewarding and healing experience," says Maria."What I didn't know when I became a volunteer is how therapeutic the whole experience would be for me personally, as I processed what life after cancer meant. 

"I have learned so much from these patients and their caregivers," she continues. "It's truly a humbling experience to share such private and intimate moments with patients when they are most vulnerable. I often tell people that I get as much from volunteering as I give, if not more!"
 
For the most part, HBB volunteers are just folks who want to help people who are facing one of the most challenging times in their lives. All volunteers receive special training, monthly debriefings, and ongoing support from the leader of the HBB program, Dhara Moddel, a social worker at The Princess Margaret.
 
“We want to make sure our HBB volunteers have the right tools and skills to perform this role, which is quite different from what most volunteers do,” says Dhara. “We recruit people who are empathetic, motivated and approachable. They don’t all have to be extroverts, because some patients appreciate a quieter approach. But they all need to be good listeners and keep their focus on the patient.”
 
Volunteers learn how to talk to patients at all points in their cancer journey, from diagnosis to palliative, with all the associated emotions. Although some volunteers do have a medical background, they are careful never to offer medical advice, even when asked.
 
In the chemotherapy area, volunteers like Dee circulate with a cart full of juice and cookies.
 
Dee Simpson “It’s a nice conversation starter,” says Dee, who has been an HBB volunteer for 10 years. “I’m here every Thursday, so I see patients who come in every week over the course of months and years. I come to think of them as ‘my’ patients,” she says.
 
One of the most challenging parts of the job for HBB volunteers is when they suddenly no longer see patients with whom they’ve bonded.
 
“My most devastating experience was with a young gentleman, about 32, who was diagnosed with a blood-borne cancer. He had two young kids who were 5 and 2 years old at the time,” recalls Farshad. “He told me that his wife left him after his diagnosis. How sad is that? His wife had custody and she was not receptive to him seeing his children because he looked less than ideal.

“He was here two or three days a week, and then I didn’t see him anymore,” he says. “I don’t think he made it.”
 
It’s not the kind of volunteer work for everybody, and the HBB volunteers get a lot of support from Dhara and the other staff.
 
“I’ve been volunteering since I was 18 years old, and I have never been looked after by staff so extraordinarily well as I am here,” says Dee. “They are so caring, always asking if they can do anything for us. They really seem to treasure us.”
 
So do the patients. Dee pulls a thank-you card out of her pocket from a grateful family who lost their beloved grandfather to cancer. The handwritten message inside says, in part, “You brighten the day of many people who otherwise wouldn’t smile that day... Hopefully you will remember us, we will be forever grateful to you.”
 
For Farshad, who says he gets thanked “a LOT,” seeing patients’ smiles is the best kind of feedback.
 
“I see the happiness on their faces when they see me, week after week, and that’s really rewarding,” he says. “One patient told me that I had restored her faith in humanity. She said, ‘When I’m waiting for treatment, the doctors are doing their job, the nurses are doing their job, but you’re the only person who’s here just to listen to me. You lift up my spirits.’”
 
Healing Beyond the Body also takes special requests from patients who need a little extra TLC.
 
“For example, I have a patient who has been to The Princess Margaret many times, and he just loves the support of our HBB volunteers,” explains Dhara. “A volunteer will meet him at the Information Desk and take him to the blood lab and his clinic appointment. He’s quite anxious, so there is a lot of emotional support involved along the way.”
 
HBB volunteers can also alert Dhara to patients who might need extra support.
 
“There was a single Mom who I’d come to know in chemo who looked rather down one day,” remembers Dee. “When I asked if she was okay, she burst into tears. Her son was misbehaving at school and had been suspended. She was at her wit’s end and didn’t know what to do about it.”  With the patient’s permission, Dee contacted Dhara, who was able to help the woman deal with the situation.
 
“We want to help alleviate whatever problems we can so that our patients can concentrate on just one thing, their health,” says Dee. “That’s what I find so fabulous about this work.”