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Cancer Simplified Episode 5 Transcript

 

Welcome to the new podcast, Cancer Simplified. My name is Duncan Darrow, and I will be the host for this program. I'm the founder of Fighting Chance, and for 22 years, I've run the charity, which is East End's only free cancer counseling center.

 

At our clinic in Sac Harbor, we have a staff that has included oncology social workers and clinical psychologists. They have provided over 5,000 free counseling sessions to East End cancer patients who feel the disease is eroding their mental health and their emotional well-being. The goal of our podcast, sort of like our free counseling, is to simplify what cancer is all about, so that the disease will be easier for patients and caregivers to understand, not to mention the general public.

 

In most circumstances, the medical experts who are available locally at Stony Brook Medicine can provide the highest standard of care. But there are a few times, really just a few, when patients must travel to specialized treatments in New York City Cancer Centers. Last year with our partner, Hampton Jitney, we provided this transportation in many cases.

 

And so with that, let's just get started.

 

Hello, this is Duncan Darrow again. I am your host for this podcast entitled Cancer Simplified, which has brought you by Fighting Chance, the only free cancer counseling clinic on the east end of Long Island. If you've tuned in before, you know that we cover a wide range of issues related to cancer, with the common denominator being that we discuss them in simplified terms, the way you would talk about something around the kitchen table.

 

No jargon, no technical scientific terms, no doctor speak, no mumbo jumbo. In previous episodes, we've examined the most common question cancer patients have, which is, what is cancer? We provided a personal answer to that question.

 

It results from corrupted genes. We've talked about coping mechanisms, including learning how to pray, and we've talked about the purpose and value of clinical trials. So today, in our, I guess it will be fifth episode if you're doing it chronologically, I want to address another intensely personal side of a cancer diagnosis, which is embarrassment.

 

It's hard to believe, isn't it, that patients worry about their disease being seen as a stigma, as a source of embarrassment, walking down the street, and people kind of mentally poking their finger at them in a kind of, you know, what a weird looking person that is, what a weird dude that is. I mean, you know, on and on. When we opened Fighting Chance 23 years ago, I suppose I was one who never thought about a patient feeling embarrassed.

 

What I was mostly thinking about was how our staff of therapists could help these patients cope with the bewilderment, the bewilderment of a diagnosis. But one day when I was in our office, a renovated garage just off Main Street in Sag Harbor, a woman walked in bundled in a winter coat, scarf, floppy hat, and sunglasses. Let's call her Pam.

 

And I distinctly recall that it was the beginning of summer, and here was Pam dressed as if it was a winter day. I left the office because Pam was about to begin a counseling session with Carrie Robinson, a very experienced oncology social worker who came to us after a 10-year career, at Memorial. I returned after two hours, and Pam had completed her session and was gone.

 

And I asked Carrie, why in the world was that patient dressed as if it was the middle of winter? And Carrie's answer, Duncan, it was a disguise. She didn't want her friends and neighbors to know she had cancer, so she bundled up, which would make it harder to see some of the telltale signs of the disease, including, of course, losing your hair.

 

I was thunderstruck. It never occurred to me that one of the challenges a cancer patient faces is avoiding embarrassment, that a cancer diagnosis can make someone feel like they are an outcast from the community. So just imagine that you're battling the disease itself, you're taking chemo infusions, radiation, and all of that, and now on top of that, you pick up this mental stress point that you're an outcast from your community.

 

But it started to make sense to me, and after diagnosis, many patients wanted no one to know they had cancer. They didn't want to tell co-workers, didn't want to tell friends. Sometimes they didn't even tell their family members.

 

They chose to suffer in secret. The one person who could be told about a patient's cancer diagnosis, however, were their friends at Fighting Chance. We were a counseling center.

 

All of our discussions were highly confidential. The doctor patient privilege, as they say. So when patients came into Fighting Chance, all sorts of things that had been bubbling up inside them, what they did not wish to share with anyone, came out at Fighting Chance.

 

And you can see that that's kind of what talk therapy is about. It's about a patient, you know, finally talking about, sort of spitting out things that have been on their mind in a very troublesome way, and doing it with kind of like the one person they feel safe to discuss this topic with. And after that, one of my kind of pet projects was trying to get members of the community who were prominent to associate themselves with Fighting Chance and sort of say, okay, this is cancer, but we still are supporting trying to treat people.

 

And I remember kind of the biggest get in terms of someone who got behind us was the Hampton Jitney, which is about as mainstream and dominant a company as you can imagine on the East End. And Jeff Lynch, who runs the Jitney, was very moved by what we were doing. And he said, you know, how can we help?

 

I said, well, I'll tell you one thing. Not everyone is treated for cancer at Stony Brook or out of the East End. There's some people who want to go to Memorial Sloan Kettering because it's number one.

 

 

And you know, for the average guy who makes whatever you make in the middle class, you know, a Jitney ticket is expensive. It's like 50 bucks in, 50 bucks back. If you go with a caregiver, add that.

 

And that's been a real burden for our patients. And Jeff said, well, why don't I just eliminate that burden? Okay, that sounds good to me.

 

How are we going to do that? He said, well, I'll tell you what we're going to do. You're going to buy Jitney tickets for 30 cents on the dollar, and I'm going to subsidize the rest.

 

I'm going to eat that loss of income, which will make the tickets really more affordable to fighting chance. Okay. So you can then give away to cancer patients free.

 

And we've been doing that for about 10 years now, and it's a very popular program. But in some ways, going back to what I said earlier, the most important part of it to me is that the Hampton Jitney is now standing side by side with cancer patients. They're saying, these people deserve our empathy.

 

They deserve our support. They are not an outcast. They're riding on my bus.

 

And that has made a big difference, and we continue to emphasize that. So one last anecdote to end this broadcast, and if you listen enough, you'll find that I like telling stories. So this is a nice one, though.

 

Jeff Lynch, who I mentioned before, is the president of the Hampton Jitney. He's also on our board. And he saw the impact that the Jitney was having, giving away these tickets to our cancer patients going into New York, and it was talked about.

 

And people were like, jeez, if the Jitney can stand behind these people, you know, who am I to stigmatize them? Two summers ago was the 25th anniversary of the Jitney. I think it was our 21st anniversary.

 

“And Jeff came to me with the idea that he would create a wrap around the bus that was about fighting chants. And our, whatever it is, 20th anniversary, I'm sure anyone who's been on the East End has noticed that the Jitney often has some sort of artistic wrap around it, publicizing a hospital or a restaurant or a perfume or whatever. And those wraps are expensive.

 

They're $30,000 to fabricate, you know, design, and then apply to the bus. And after 30 days, you take it off. So it's a 30-day contract.

 

And Jeff suggested he do that for Fighting Chance. I said, Jeff, I can't pay you $30,000 as much as I'd like to. He said, you know what?

 

It's a gift. You've made it this far. Someone, you deserve a nice gift.

 

And so there we were, and I must say, a lot of people saw that bus, and they would call up and say, you know, this is cool, you're a non-profit, and you're now wrapping a jitney when it's usually, you know, a restaurant or a fashion house or whatever. And I have pictures of that jitney with Jeff, and it's always, you know, holds a special place in my heart.

 

There's that music again, which means we're coming to the end of this podcast. By all means, first of all, visit our website, fightingchance.org. At the top of the home page, you'll see a podcast button, press it and you can get access to this podcast and all the other podcasts that we've prepared.

 

The home page also lets you click through to other services of Fighting Chance, which are available to residents of the East End of Long Island. For example, there is counseling appointments to help patients get through the highs and lows during the battle with cancer. There are free local taxis to get you to cancer-related doctor appointments on the South Fork.

 

There are free Hampton Jitney tickets if you need to see a specialist in New York City such as Memorial Sloan Kettering. And there's also a free local resource guide about 25 pages, that we produce in partnership with the American Cancer Society. If you have any questions about what we've discussed in this podcast, please email them to admin at fightingchance.org, and we will try to get back to you individually or answer your inquiry in the next podcast.

 

There's that music again. Time to go. Hope you tune in again to Cancer Simplified, brought to you by Fighting Chance.