A diagnosis of cancer can be a life-altering experience that affects patients and their loved ones in many ways. The Cancer Care Center supports patients during all aspects of their care—from diagnosis through treatment and recovery.
Bob David shares support services available at BMC during and after cancer treatment.
Bob David is a clinical social worker and the manager of cancer support services.
Melanie Cole (Host): A diagnosis of cancer can be a life-altering experience and it can affect patients and their loved ones in so many ways. Here to discuss cancer support services available at Boston Medical Center is my guest, Bob David. He’s the manager of Cancer Support Programs at Boston Medical Center. Bob, tell us about the significance of support, in addition to the clinical care that cancer patients are going through, the significance of support during and after cancer treatment.
Bob David (Guest): Well, thank you for the question Melanie. Let me just backtrack a little and say that our program was started by the director of our cancer clinical trials program. This was in 2005. And she said, you know – and two of her top nurses said you know, we are doing a lot for the patients with their treatment, but there are other needs that are not being met. So, she started by getting a small Lance Armstrong grant and that provided money to buy food and pay for some transportation and then nurses donated their time and they started a few support groups. They started an ovarian cancer group, a breast cancer group and then I think the first Hattian-Creole speaking cancer support group in the country, and I think right now, we have really one of two in the country and a colon cancer support group. And that’s how it all started.
And it has just continued to grow. I came on about ten years ago and we just keep adding various programs which I will describe a little more in detail later, if you would like. But yeah, it’s just very – the needs are great. When someone is diagnosed with cancer, or any chronic long-term major disease; I mean it affects them across the board. It affects their daily life, their physical health, psychological, emotional. It affects the families, family relationships. It affects their capacity to work and do any of the activities that they have regularly done. It affects their children. If it’s a young person with cancer, it certainly affects the parents. So, they are just going through a lot. And as we all know, when people come in to a hospital and see a team of doctors, the doctor’s time is always limited. So, they address what’s most important medically, but they can’t really usually take the time to tune in on a level deeper than that and kind of feel out and be particularly attentive to the emotional social needs of patients.
Our hospital, Boston Medical Center, has a very, varied culturally diverse and rich population. We have many inner-city people, we have people who come here from all over the world. I mean I feel so fortunate to have gotten to know people from all over the world. But it also means that we have a population that has extraordinary duress in their lives. Housing issues, work issues, family issues, poverty issues, all kinds of things and you could just imagine if you are diagnosed with cancer and you are already – you already have your hands full just to manage your life. It can be really a difficult journey. So, we do what we can to help and to offer good things to the cancer patients and survivors.
Host: So, along those lines, Bob, how do you identify the needs of these cancer survivors? As you have mentioned, there are so many external factors besides just the clinical care provided by their physician or oncologist. What are some of the late and long-term effects in survivors as far as depression, and family issues as you’ve discussed? Tell us how do you identify those?
Bob: Well, that’s a huge question and a huge task and I can’t say we do, or anybody can possibly do a great job addressing all of those things. First off, our Cancer Support Services include patient navigators. We have a great team of six patient navigators who help people with logistics, just making sure they get to their – they can get to their appointments, if they need transportation help, if they have issues with bills at home, the navigators help them find resources. We have an oncology social worker who can focus in on particular emotional stress, housing issues, what have you. I mean they are limited in what they can do certainly, but they are there to help. And we have a dietician, we have genetics counseling and then we have the cancer support programs of which I’m in charge of. And honestly, we cannot address everything, and the fact is, it’s the patients who reach out more on their own who get more services. Otherwise, we really have to look, and we have to listen and pay attention and pick up on what we can and do what we can with the resources we have.
For myself, we go into the chemotherapy bays or down into the radiation oncology department and introduce ourselves to patients and start building a bit of a relationship. If a person is just new into treatment, recently diagnosed; they are scared, and they have a ton of stuff on their plate. So, they are not really ready to engage necessarily in a support group or come to various programs. But we recognize that. So, we just want to be friendly, introduce ourselves, maybe see them again next time they are in chemotherapy and maybe down the road, when a patient is kind of on the downhill side of the chemo, in other words, the scans are showing that the chemotherapy is working and they are not so afraid that they are going to die from this cancer, they are felling more optimistic, they are seeing they are going to go on with their lives; then they may be more ready to engage in some of the programs that we offer.
And so, then we are ready for them. And we will all along the way be encouraging and supportive and say come to this, you may – and bring your wife or bring your daughter or whoever. These are open for everybody. And we provide a meal and we provide free parking and if you really need help getting home, we’ll help you with that too. And part of the message also is, support groups are not a bunch of people complaining and it’s not sad news, it’s more laughter and encouragement and enjoying one another’s company than anything else really. We also provide a meal at most of the groups.
So, it’s kind of a we meet them, and they meet us and to be honest, there is something I’ve really come to see, and I say this many times to patients. It’s those who realize – who can accept their disease and see that it’s part of their life, but it’s not their entire life. They still have a will to live and a desire to see their grandkids grow up or their – they want to finish this school program they started or whatever it may be, or they want to go back and play golf again or whatever the case may be. They have a reason to keep going and they also recognize that they are not alone with this. So, they don’t want to be alone with this and they want to talk about it, and they want to hear what other people have been through or now that I’ve been through treatment, I want to talk about it. I want to unwrap this a bit and compare my experience with others. Those people have an advantage and just that kind of attitude. Those are the ones who do the best with their treatments. Those are the ones who tend to come to groups and keep coming to groups and are helpful to others who come newly to groups. So, it’s – we kind of tap into that energy as best we can, but somebody has to say yes to coming in the first place, or yes to listening in the first place.
Host: What a lovely thought process you have Bob. Tell us a little bit more about how Cancer Support extends to the families. You mentioned them and how are the families involved in all of this? Are they receptive? Do you find that sometimes the patient is the one supporting their family members who might have a tougher time? Or tell us a little bit about how that dynamic works and as far as navigating the world after treatment, fatigue, depression, all of the things that come along with it. Wrap it up for us with really what you would like us to know about this program. I know it’s a big question, but I know you can do it.
Bob: Well, thanks for your confidence, Melanie. That is a huge question. And as I said in the beginning, a disease like this affects the patient and the family in a big way. I think there’s a huge need in general, to tend to caregivers. And we have – we have done caregiver groups and right now I have it set up that the person can call in and make an appointment basically with me for to consult on caregiving and just to get some support on caregiving. Because it’s a really tough role in that people see that the patient is suffering and they inquire about the patient, but seldom do they inquire about how the caregiver is doing. And it’s such a burden because the patient, understandably doesn’t feel well and can be cranky or just can feel bad in so many ways and the person they are going to take it out on the most is the person that’s closest to them who is taking care of them. So, it’s a tough job for any caregiver and it’s almost universal that it happens this way. I mean 98% of the time, the caregiver feels burdened.
So, we address that, at times. I address it as much as I can when caregivers are present or sometimes it’s just patients and we talk about it and the strain and the stress on the caregiver and other people in the family. I just wish we – it’s hard. It’s hard for patients to come in here for groups when they are not already here for their care. It’s hard for caregivers to come in or family members for a host of reasons. One, they are caring for the patient. Two, they are making the ends meet for the household. They are busy. They are watching the kids or whatever the case may be. So, it’s hard for them to come in. So, we’ve had a hard time actually running groups on any consistent basis where caregivers come to the hospital.
But those who choose to participate, always my sense is, get some relief from it. They get some understanding. All I have to do is I start talking about what I was just saying about how this is such a burden and nobody asks how they are doing and there are other aspects I point out too about how you- you end up walking on eggshells a lot of the time because you want the patient to eat more or don’t strain yourself or do this or don’t do that and the patient gets tired of hearing it. So, it becomes a difficult dynamic and nobody on the outside usually understands that.
So, we encourage caregivers to take care of yourself, make time for yourself, ask for help. I mean these are not novel concepts by any means. And ask for help early. Don’t say I’m fine, everything is fine. Because then people will stop offering and then it becomes harder to ask. So, it’s important – I guess this is one takeaway I would like to stress is it’s important as a caregiver to let people help right at the beginning. Even if you feel like you don’t need it because then you will be able to get more help when you do need it and people like to help. People like to give. They like opportunities. So, when you say I don’t need any help, you are denying ultimately yourself, the patient and then your friend or the person who wants to give help. So, help is a great thing. So, we should all be open to it.
Beyond that, it’s a tough road, but like I said earlier, those with a positive attitude and a will to live and a reason to live, do well for themselves and they make it easier for their family too, in general.
Host: It’s great information. Thank you so much Bob, for coming on and telling us about some of the challenges that cancer survivors face and how Boston Medical Center Cancer Support Services can help in so many ways. What a lovely man you are. Thank you again for joining us. This is Boston MedTalks with Boston Medical Center. For more information on Cancer Support Services you can go to www.bmc.org, that’s www.bmc.org. This is Melanie Cole. Thanks so much for listening.