"Listening To Their Stories"

James Willsey, Chairman of the Board of Directors of the Partnership and Jim to everyone he meets, has been listening to stories of patients with cancer for the past 30 years as Chaplain of Roger Williams Hospital. He has celebrated their resiliency and comforted those who seek a meaningful quality of life and spiritual guidance as their disease progresses. We are most fortunate to have Jim at the helm of our coalition, listening to us and providing the leadership required to make the Partnership an effective voice for RI cancer patients and their families.

00:00 Megan: Hello, and welcome back!

00:01 We are continuing our series of interviews with our Board members today with Jim Willsey. So, we will get started. Our first question for you, Jim, can you just tell us a little bit about yourself and what you do.

00:16 Jim: Sure, I am the Chaplin at Roger Williams Medical Center.

00:21 I've been there for 30 years now and was hired to work with people with cancer and their loved ones and have been doing that the whole time.

00:32 It's been a blessing for me to be able to be with people and help them use their spiritual resources to cope with this disease cancer. And to fight through it and do other treatments that need to be done and to keep going!

00:53 So it's wonderful to watch people and their resilience as they're diagnosed with cancer and then given ways to deal with it.

01:03 Been, as I say, in Rhode Island with my wife, Rose, for 30 years as well.

01:11 I came here for that position at the hospital and over the course of time I've been involved in many different aspects of cancer care.

01:22 Running support groups for men with prostate cancer, for general cancer support, for, with the Leukemia and Lymphoma Society in Rhode Island Hospital.

01:35 We do a group for people with blood cancers. So, support groups have been important.

01:40 Been involved now, in palliative care which is, came onboard maybe 4 or 5 years ago, as a very important aspect of helping people with more resources deal with this, this terrible disease.

02:02 Megan: So, you do a lot with your work, obviously, why do you find your work so rewarding? You know, what is the most rewarding with your work?

02:13 Jim: The thing that I enjoy the most is listening to people tell their stories and then as they tell their stories, come up with ways that they are going to deal with their cancers.

02:29 And to watch the positive attitudes that emerge and the fight that they are willing to fight. So, this whole human resilience comes up time and time again as people deal with whatever cancer they are facing.

02:51 Joe: Jim, if I could ask a question with regard to resiliency, is there one or two things you could point to that is sort of one of those areas that you say if people can think in this particular way, whether it's an attitude or whether it's an activity that really helps that resilient the rebound, I guess, to the treatment?

03:21 Jim: I think one of the things that comes up and, you know, I'm the Chaplin so I would be remiss as a Chaplin if I didn't speak about dependence on God.

03:30 So, when people face something that they have a sense that they've lost control of they can turn to a higher power, they can turn to something that they turn things over and let control their disease.

03:44 Other people, will point to their past histories, or to their families, or to the belief in the goodness in nature and take those weapons, if you will, with them as they fight their disease.

04:04 Megan: That's really powerful. Thank you. So, you've been involved with the Partnership for a long time now.

04:12 So, could you tell us a little bit about your relationship with the Partnership, your role over the years, and kind of, the work that you've been doing with the Partnership what has that involved?

04:27 Jim: Over the course of the years, the Centers for Disease Control had many projects that they tried to do to get better control on cancer.

04:40 And so, when I began, there was a program called the Governor's Initiative to get the Mayors of all the cities to have a cancer council or task force.

04:53 And I was part of the Cumberland task force in the early days. That evolved into the Partnership to Reduce Cancer in Rhode Island.

05:02 And, when that, when that happened, I came on board hoping that we could do even more than we had done in Cumberland for people with cancer. So, I've been involved with the Partnership since its inception.

05:19 And, some of the things that really have been of interest to me were survivorship and then especially the Cancer Summit.

05:29 Where we brought together patients and treatment officials and other caregivers and family members and had wonderful speakers talk to them about different aspects of cancer.

05:49 Often they would be able to talk about cutting edge technologies, hope for the future, what they, what biologics, you know, 10 years ago when they started talking about biologics to the general public and to cancer caregivers it seemed brand new and out of the blue and now we accept it as something that, that is an everyday occurrence. So, if we have a way to treat this cancer, we can use a biologic on it. So.

06:22 Megan: Great. So, you’re our current chair of the Board of Directors. So, could you talk to us a little bit about your experience in that role. And any challenges that come along with it?

06:40 Jim: My experience in the role of chair is as long as I sit back and let the committees do their job everything works wonderfully.

06:50 I often say, "If I step out of the room for a minute, more gets done then when I'm there," I say that,

06:57 Joe: That's not true Jim.

06:58 Jim: I say that fictitiously. But, you know, we have some wonderful people working in the Partnership and my primary role is facilitate discussion, and to facilitate work groups, to be able to do the job that they can do so well. So.

07:18 You know, one of the things that we're hoping to do is to be able to get more people involved in the Partnership.

07:27 And I think if you saw the good works that we're doing I can remember just a few years ago when I was chair of the survivorship work group. We got a couple of people involved, and did actually did pamphlets.

07:43 One on nutrition, and what to do about diet during cancer treatment, and another one on clinical trials.

07:53 And those pamphlets are available today to help people to become aware that clinical trials aren't experiments on human beings.

08:03 They're scientists taking the best resources that they have and trying those against treatments that are there but aren't as effective as we would like treatments to be.

08:17 And so, you know, if we can dispel any notion that, you know, clinical trials are experiments on humans and that if you join a clinical trial you are a "guinea pig," as they say, that's not the case.

08:33 Before, you know, clinical, well, before phase 3 clinical trials happened the scientists have already looked at toxicities, and they've looked at success, ratio success. And then tried to apply it to a larger population.

08:55 Megan: So, I'm just wondering, what have your roles been, you've been around with the Partnership since it's inception, and you're the current chair now. Have you always been in, sort of, that leadership role with the Partnership?

09:12 You know, and if so, what else did you help lead besides those two work groups or, you know, any notable work that you've helped the Partnership get out in the past?

09:24 Jim: So in the past I was a little bit reluctant to step forward to this level but, I was highly engaged in the Summit because I saw the value of it as I spoke.

09:37 The survivorship work group because I thought there was so much to do and so much that people need to know when they are faced with a diagnosis.

09:48 You know, and so much change in an attitude that I am a survivor and we like to say you are a survivor from the moment of your diagnosis.

10:01 Most people don't like to say that they say "oh, you know, in 5 years I can call myself a survivor."

10:07 And I say no you have to just imagine, just know that everyday that you are fighting this you are surviving it and you are a survivor.

10:18 As I said earlier, also I'm involved with the palliative care work group and as a part of that, there is an advisory council for the Director of the Department of Health.

10:31 Because I was doing palliative care work for the Partnership, I was invited to sit on that advisory council for the Director of the Department of Health, to talk about palliative care and quality of life.

10:47 Let me just segue for a second to say that you know, palliative care is really an extra layer of care  that is available for people with maybe a life-limiting, or serious disease to help them to deal better with it.

11:07 Given more resources, a physician, to treat to treat pain, maybe anxiety, maybe depression.

11:14 A nurse, to manage the medical system. A social worker, to deal with all of the asundering social issues that come up: finances, family, helping people communicate better.

11:29 And a Chaplin to deal with the spiritual, help people deal with their spiritual resources.

11:36 So those have been, at least the Summit, the survivorship and palliative care, 3 of the groups that I have worked on.

11:45 Megan: So, speaking of those groups, you know, the Partnership is attempting to strengthen our membership at this moment, and, you know, particularly during this difficult time when cancer survivors really need support more than ever.

12:03 So, the Partnership is transitioning into getting our work groups started again, and you are going to be involved in that process, of course. So, you are going to be a part of the survivorship work group again, and, potentially the palliative care work group.

12:21 So, can you speak of what you would like to do with those groups, now and moving into the future. And how that may differ from what you have done in the past.

12:32 Jim: Well, I think if I start with the palliative care work group. My goal in that would be to get the message out there. That palliative care is for people facing cancer.

12:46 And, given all of those resources it would be foolish not to, not to avail yourself to get the help that can make it so much easier, make it easier to cope with your diagnosis, easier to cope with treatment,

13:00 easier to cope with side effects.

13:04 You know, and so many of the good physicians who deal with cancer do a lot of that, but when you have primary teams simply focused on all of the extras, you can imagine how much more they are able to give to the patient and their family members.

13:25 I would like to see survivorship begin to look at some of the political ramifications around, around cancer. From advocating for more funding from the state, more funding from the Federal Government.

13:44 To help people cope with their illnesses, to look at medications and how they're, you know, how they can be prescribed and how they can be afforded. Because, that's certainly going to deal with how people are treated.

14:00 A couple of things, I'd like the summit to continue to be on the cutting-edge of what's going on in cancer care. And I think for the last 12 or 13 years, each year, the summit is presented, there's something new nationally, and something that Rhode Island is doing that's on the cutting-edge in cancer care.

14:28 So, a couple of things. More importantly, I'd like to see more people get involved.

14:35 It's relatively easy to contribute. You know. It's been said, you know, 95% of it is showing up.

14:50 If people want to show up, they can contribute to all of the work groups and all of the work groups have a, have a place to advance cancer care, help survivors help them deal with things.

15:08 So, if you have an interest in any of the groups, I'm more familiar with the ones I mentioned but, you know, it's looking at policy, looking at environment, we're looking at, we're looking at prevention.

15:27 So, you think of the prevention work group, just getting sunscreen out to the Pawtucket Red Sox ballgames two years ago so that people in the stands didn't get sunburned.

15:41 Making people aware at the beaches where we do a screening for people. We've discovered melanomas and we have saved, actually saved people's lives.

15:55 By being on the beach and bringing dermatologists down and having people who volunteer themselves coming in or wanna be checked and get a chance to be checked.

16:06 You don't have to worry about paying for a dermatologist visit. But, they can be checked.

16:13 And we've discovered several cases of melanoma. And we've discovered other skin cancers basal and squamous.

16:26 And been able to get those people to treatment they needed before there was something that would have, you know, could've been life threatening.

16:36 Megan: Great, thank you. You mentioned, kind of, becoming involved and kind of fostering that.

16:43 So, we actually do have a few Board positions that we are looking to fill. So just, you know, thinking about that, what types of individuals or skills do you think you know, we should be looking for, would you be looking for, for the Partnership?

17:01 Jim: Well we've recently added people who are have some skills in finance. Which has been important.

17:09 But, a Board member is somebody who can make a commitment to the Board meetings, who can bring ideas about what they'd like to see where they'd like to see the State go forward as it deals with cancer, and who are willing to work and sit on a work group so that they can contribute and bring information back from the work group to the Board.

17:35 And, as you mentioned, Megan, there is a Board of the Partnership to Reduce Cancer in Rhode Island. It kinda steers it so that it stays and is able to do things that the Federal Government would like the states to do regarding cancer.

17:57 Joe: Jim, I'd like to just right here acknowledge your, really, involvement with the Partnership and how strong your leadership has been over the last year which has helped us, I think, to really pick up some momentum in the key areas of the work groups and Board development.

18:17 And, you know, our organization is moving forward and as I have often said, you need that leadership at the top to kinda rally the troops, if you will, and you have done a fine job of that and I would be remiss if I did not ackowledge and thank you for not only the years of service that I wasn't involved but, since my participation a year and a half ago it's been great to work under your governance and leadership on the Board. So, thank you.

18:47 Megan: Yes.

18:48 Jim: That's been made relatively easy for me by staff, so you Megan and Joe, by the Board, by people who are willing to sit on work groups, the Summit Committee, even though the Summit needed to be postponed because of COVID, it's working very hard to make sure that a Summit happens this Fall.

19:12 How that's going to be, we don't know yet. We have contingency plans and however it needs to happen you can be reassured that it is going to happen.

19:23 So, between the Board, the Executive Committee of the Board, and the work groups it's delightful to be able to say well, we're making a difference in Rhode Island regarding cancer.

19:35 You know, that in that 12 years that the Partnership, longer than that, has existed so many things have changed. And yet, the need to advocate for patients, for family members, for the community, regarding cancer continues to be there.

19:56 Joe: Thank you, Jim.

19:57 Megan: Thank you, Jim. Thank you for taking the time.

20:01 Jim: You're welcome. And, if you're watching this consider joining the Partnership.

20:09 Because, you know, whether you know it or not, you can make a difference. It's a matter of being interested and willing. So, you know, your willingness is the most important aspect for you to, to become an active member of the Partnership. However you're able to do that.

20:28 Megan: Absolutely.

20:29 Joe: Well said, Jim, thank you.