2016 Patient Café: Becoming an Effective Member of Your Healthcare Team

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Topics include: Patient Stories

I’ve been diagnosed with cancer.  Now what? Patient Power Host and CLL Patient, Carol Preston, moderates a discussion on how to be an effective member of your own cancer team, or as Carol says, “Dial it back.”  In this café session, Elaine, Derek and Lisa explain how they have been able to maintain their sanity and health.  Listen as they share stories about exercise, meditation, eating well, music, counseling and joining clinical trials.

Sponsored by the Patient Empowerment Network through educational grants from AbbVie and Genentech Inc.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Carol Preston:

Let me just jump in and ask if because, obviously, there’s no quick fix for this. But for people who are listening to this and saying, yes, I need to find a way to take down the temperature, to dial it back a little bit, is there one, little, first step that you can offer to help somebody get started?

Elaine:  

You know, I live on the basis of hope, faith and trust. And as Derrick said, you need to search for hope. And I know that I feel very blessed that I have that. Excuse me. I’ve been doing meditation, yoga, spirit chanting, Tai Chi, Qigong. 

Carol Preston:   

Take your pick.

Elaine:  

Take your pick. I used to ride a bicycle every afternoon after being at my drawing board for many hours. Now, I walk. And so I walk a mile every morning. I lift weights. I do deep knee bends to keep myself and my core healthy.

Carol Preston:   

Yeah. I love the yoga and the weight lifting. And you’re just running on a treadmill just to get some energy out.

Elaine:  

And also, I’ve been a vegetarian for 40 years. And so I live a pretty healthy lifestyle. And when I got this diagnosis, I became a vegan because I read that sugar feeds cancer and that dairy products carry IGF1, which helps tumors grow. And so I gave up all sugar, all dairy, all grains. The only grains I eat are quinoa and brown rice. I eat a purely plant-based diet. 

Carol Preston:   

Wow. All right. Well, that is, obviously, something that has worked very, very well for you. And for those of you watching and listening, you just take a little bit of this and a little bit of that.

Not everything works for every person. But that’s why we’re having this conversation today to find out what is working and what is helping people maintain their sanity, because we know how frightening a cancer diagnosis can be, especially if you’re newly diagnosed. Derrick, how about you? 

Derrick:                 

Well, how about we start off, you mentioned music. And I turned to music on diagnosis or shortly after diagnosis. And I’d like to just start off by I wrote a song called “The Hemo Blues.” So let me just say to you, as a poem, the first and the last verse. So the first verse, it hits you like a hammer. And you come to realize the challenge of your life is right there before your eyes. The facts of life so suddenly have a meaning all anew. And you struggle to conceive why me, why not you?

The last verse is it’s not the final sentence. We now start to fight. Determination forces us to see the world with new delight. The people that we love have a meaning all anew. And our senses come alive as we sing the hemo blues. And I guess that really is the way I feel. And when I was diagnosed, I had a little lump on my neck. So my wife took me to the hospital, and I had some tests. And when I went there, and I came home, and I walked in the house, and sat down on the steps leading up the stairs to the bedroom, and I just sat there and cried. I was sobbing. I was sobbing, because I ate well. I don’t smoke.

Really, I’m just a very light social drinker. I exercise. I had a great business, a loving family. And it was just incomprehensible to me. And I had a good business, and I was very busy. And I was, actually, building a new showroom at my house at that stage.

So I was very busy during the day. But come nights, I couldn’t shut off. And I went to my doctor, and I said give me some happy pills. I want to just take one of those little pills and just float for a while and just get this rubbish; I used a stronger word than rubbish, out of my mind. And he said no, I won’t do that. By the way, he’s the same guy that told me that 80 percent of the people that walked through his door he could cure with a sugar pill, but he wasn’t allowed to. It doesn’t relate to us, but it relates to other things in terms of medicine. 

But I went to see a psychologist. And I walked out of that psychologist’s office, and I thought to myself I think he needs me more than I need him. And I just switched on. I came alive again. Then, I planned what I was going to do, how I was going to cope with the rest of my life, which I didn’t know what it was going to be.

At that stage, they told me six to 10 years. We’re going back 11 years now to 2004 since my first consultation. So I did a number of things. I, basically, retired. My daughter came back from Australia. You can hear by my accident that I lived most of my life in Australia. And she took over the business and sold the building. I even sold part of the business. I sold my house. I said whatever the—I knew that I wasn’t going to be chair-bound or house-bound, but I was still going to be getting around. So whatever years I had left, I wanted to enjoy. We rented a gorgeous penthouse apartment overlooking the harbor. And six years later, I had to break the lease and sell, because I was living way too long.

I couldn’t afford to stay there. 

Carol Preston:   

Oh, my. A happy dilemma. That is fantastic. Derrick, let’s hold some thoughts. And I do want to bring in Lisa who really has been juggling a bunch of balls in the air for the last several years. So, Lisa, share with us, if you would please—and by the way, Derrick, thank you for that wonderful poem. I know it’s a song, but that was just wonderful. Lisa, it’s been a roller coaster.

Lisa:       

Yes, many hurdles, many hurdles. And fighting back. When I was first diagnosed with my first cancer that was like 10 years ago. And that was thyroid cancer. And I changed my whole diet at that point. My family also found out we have a history of celiac disease. I don’t have celiac disease. But I’m intolerant to gluten.

So we got rid of all of the gluten. And I actually improved quite a bit and so did my kids. And a few years later, I had gotten in great shape. I eat a whole food diet; cut out all refined sugar, refined flour, and I, basically, eat vegetables, fruit and lean protein. And I feel fortunate that I don’t have a family to cook for, because it’s easy for me to stay on my diet. And it takes a lot of discipline, but because of the challenges that I have, I want to make sure that—I was fortunate to be able to have a partial nephrectomy. And I have full function of both of my kidneys, which was really important when I had my kidney surgery. And so I’m balancing so many challenges.

And being in clinical trial and living on the cutting edge of research, I want to be sure that I’m going to be able to participate in clinical trials. So I want to make sure that I keep myself as healthy as possible. And that’s what I do. I eat a whole food diet. And I walk. And if I get knocked down, I get back up, and I walk some more or I ride my bike, whatever it takes to keep my cardiovascular system strong and to keep me healthy and to get me back on my feet. And I listened to my doctors. I talked to the dieticians. I have a counselor that I’ve seen for quite a long time. Sometimes I use the counselor at my cancer center.

But I’m not into supplements, because the field is not regulated. If I do see research on supplements, and they can confirm that it works for a particular reason, I would consider that…

But also being in clinical trial, I’m not going to add supplements. I can’t take supplements… 

Carol Preston:   

Yeah. Let me just jump in and mention something, because we’ve certainly heard many cancer specialists, CLL specialists, caution against using supplements. So for anyone listening and watching, if you are using a supplement, it is critically important to make sure that your doctor knows, because he or she is the one that can understand if and whether there’s an interaction. The only thing that I take, when I remember, is vitamin D3. But it’s reported to every doctor that I see. And the determination is made, yes, it’s okay, for my case, it’s okay.

But we can’t emphasize enough how important it is to, at the very least, make sure your physician, your internist, your specialist, your family care provider knows that you’re taking a supplement.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on August 24, 2016