MISSOULA — When the doctor says, “you have cancer", your life suddenly changes. Often, it is overwhelming.
Missoula’s new Cancer Support Community (CSC) will be a place where no one goes through cancer alone. It is a host of free services and support to help cancer patients with anything they need to fight the good fight.
When Ray Curtis lost his wife Nancy to cancer five years ago, he wanted to make sure their daughter, Jadi had the support to process that profound loss. His research revealed many states had what is called Cancer Support Community chapters. Bozeman had one but Missoula did not.
"Then asking the question why doesn’t Missoula have one? Asking Missoula people why...why don’t we have one?” asked Curtis.
That began the effort to form Missoula’s Cancer support community, part of a national nonprofit effort providing free support to patients and their families and friends, no matter where they are in their treatment.
Their motto is “no one faces cancer alone.” They help even when you are not even sure what it is you need or what service can best help you. But it was a battle. Frustrated, Curtis almost gave up -- until he met Heather Sundheim and Hailey Kern. Together, they got the wheels turning again.
“Cancer Support Community is a nationwide nonprofit and it's dedicated to making sure no one faces cancer alone. It is researched-based, so it is tried and true, that is vetted by oncologists and other medical professionals,” said Sundheim, who is the program director.
“And those services are all free of charge, not only to the patient but to any family members or caregivers so if mom has cancer, all the kids, the spouse can come. It is for everybody,” she continued. “And so, we are in the process of raising $200,000 right now to open the doors for the Missoula chapter which will be the second chapter in Montana."
The offerings are remarkably diverse.
“There's one on one therapy, support groups healthy lifestyle groups, fitness, nutrition,” Sundheim told us. “A lot of services that the hospitals can’t get reimbursed for are really essential services for people in treatment and post-treatment to regain their life and sort of their vitality. So, this is a way for them not only get those resources but also to do that in a community in a place where there are other people like them who get it.”
“Family members who are taking care of a loved one can go to a class and meet other people in their same situation and really get that support in a home-like environment, not in the hospital setting which of course is so necessary but this is something different,” Sundheim continued.
Since Bozeman’s chapter has been in existence for more than a decade, virtual programs on-line right now are available for anyone to access.
“Bozeman is helping. We are independent as individual chapters, Sundheim explained. “They have been around so they’re keeping get our feet under us. We’ll share some support services but we’ll also add our own local flavor such as the Silver Lining group that does the Dragon Boat racing and that’s a big thing for this community.”
“And we have a lot of writers and artists. And we’ve got Red Willow and Fit to Fight and Camp Mak-A-Dream; and all these great organizations that have already been working hard for people with cancer for a long time,” Sundheim said. “So, we’ll get to elevate what they do in our center and draw attention to their good work. And give them an opportunity to interact in another setting.”
“Missoula has so many great services already and nonprofits and we get to meet with them and try to bring them together,” added Curtis. “And so, somebody who is trying to figure out how to live with cancer has once place to go.”
“Finding those (services) yourself is challenging and you don’t necessarily have the energy or time to find all these wonderful things. You have a great folder full of brochures but to put that all together is difficult,” Sundheim pointed out.
“For the health care professionals, when you got an oncology appointment that lasts eight minutes on average because it has to -- how to you fit in all the anxiety and the depression and the other things and the family. And what if you’re having trouble sleeping?” she continued.
“We can provide some of those ancillary services that the oncologists and hospital staff don’t have time for. And that helps the patient as well, they come to their appointment and they’re ready to go because they’ve gotten some of those other questions' answers. They are prepared,” Sundheim said.
Kern, who had leukemia in her 20’s, is now a co-founder of Cancer Support Community Missoula. “I think it’s about a road map. We need a roadmap just like you picture a map for I-90. There are lots of exits. There are lots of roads you can take to get anywhere in Montana."
“But whether or not you are in a place mentally while you’re in treatment or coming out of treatment to really even hold up that map and say ‘where do I need to go?” That is what Cancer Support Community will do for everyone and that’s not just the patient,” she explained.
“Our focus is also for the caregivers and your friends and everyone that’s involved in it,” Kern continued. “I think we all know and acknowledge the ripple effect of how a cancer diagnosis affects every single person. That’s the whole reason there are already groups that are set up for meal trains, right? It's because people care. “
“And that’s part of CSC’s general mission. To be able to provide that road map for every phase whether you are at the beginning of treatment, you have a great prognosis or you have a sad prognosis. It does not matter. We’re still going to be able to provide that map and say whatever you need, we can help you navigate what those resources are and we can help figure out what it is.”
“I think there needs to be a place for people to navigate their anger and navigate their fears. There is this hidden illusion that people going through treatment are so brave. I was mad as hell,” Kern laughed. “I was like, this is a serious interruption to my 20’s and I'm not super happy about this. Sometimes I felt blessed and felt like the strongest person in the world."
"But I do feel there needs to be someone who is not your oncologist or nurse or physician to say you, ‘know what? It’s OK to be angry. It’s OK to be mad or sad. You are grieving. Your life just took a huge pause.” Kern told MTN News.
The services apply to anyone at any time in their cancer journey, no matter what kind of cancer they might have.
“That's another aspect. What if you have the wrong kind of cancer? What if it’s not breast cancer? Or if there's only one or two of you in Missoula who have your particular cancer?” Sundheim explained. “No matter what kind of cancer you have, there are resources here for you. There are programs specifically made to support those types of cancer and to connect you with others across the country.”
It scoops everybody up in one big embrace and they can find their own people within that support community. And for survivors too, to have a place to plugin,” Sundheim continued.
Fundraising is underway to find a homey, non-medical type facility. The goal is to raise $200,000. As the COVID-19 pandemic continues, CSC is saving its money, offering virtual classes, and looking forward to opening the doors to a place where caring, concern, and courage will be waiting. It does not matter where you are in your cancer journey, newly diagnosed or 10 years out, it is free.
As Sundheim says, they can process their fears through art and writing and therapy through this whole family support system.
“We’re in a unique situation because we’re in a two-hospital town. So, we’re really Switzerland. The patient is the true North. It doesn’t matter where they get treatment. We are here for the patient, the family, and their caregivers. And the upside is it benefits the hospitals and the patients and everyone involved to have that community support."
Right now, Cancer Support Community has a fundraiser where you merely donate your spare change called Pour it Out Missoula. Take your change to either of the two Bicycle Hangar locations in Missoula and tell them you’re donating it to the organization.
Click here for information on how to donate, volunteer or to learn more about programs and the personal stories of those working on this project.