How to Talk About It: When Hodgkin Lymphoma Comes Back

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Topics include: Living Well and Patient Stories

[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. Meredith and Suzanne share with us their latest news. For previous conversations and blogs with Meredith and Suzanne, click the links below.]

When your cancer comes back, how do you begin to tell others about it? Some people use social media, others make phone calls – what works for one person may not work for others. Meredith Wooten and Suzanne Hyte, Hodgkin lymphoma patient advocates, talk about how they chose to communicate their relapse to family and loved ones. Meredith talks about how and why her communication methods changed after she relapsed. Suzanne expresses the important role her parents played in helping to spread the word of her relapse because there were days she didn't have the strength to do so. Watch now. 

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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.

Andrew Schorr:

First of all, you gave everybody 24 hours to cry when you were first diagnosed, and then you go back to the doctor and you've relapsed.  How did you tell people, or did you tell them? 

Meredith Wooten:

I did.  The first go-round, I had a blog that explained everything from the beginning to the end.  And then when I relapsed I went to that blog and I started typing, and I couldn't get my feelings out.  What worked the first time as an outlet for me, and to let all my friends and family know what was going on, didn't work the second time.  When I had to make the phone calls to all my immediate family and really close friends, to tell them, it was my sarcasm. 

I used stupid jokes, trying to keep everyone at ease, because I didn't want everyone to freak out, because as I told them the first time around, I got this.  It's curable.  And then to have it come back, and come back so fast, it was like, what am I going to tell them now.  I all ready told them I beat this, and now it's back, it was hard, and very challenging, because I was angry, and you just say, don't worry, I got this again, was kind of my go-to saying.  Don't worry.  I got this. 

Andrew Schorr:

Do you feel that your positive attitude helped some of them get through it? 

Meredith Wooten:

Absolutely.  And social media.  The first go-round my phone bill skyrocketed.  I had my blog last time, this time I had Facebook. Friends that were close disappeared and friends that were acquaintances, that were distant friends or friends in the past, stepped forward.  So, it's very interesting how people react to cancer and how they deal with it, but then trying to comfort everybody to know that, don't worry, this is good, and kind of giving them the play-by-play, helped, I think, them to know, oh, well, if she's okay to post this picture, or this saying, or this inspirational quote, then she's going to be okay. 

I definitely think that it helped to talk about it, be open about it, and not hide anything.  If I was having a bad day, I said I was having a bad day.  I am on my couch and I'm not moving.  Or good days, I am out and about running, this, this and this, and I give them a check-off list of my day's activities, and then they knew, oh, good day, I can call that day.  Or, oh, I'll leave her alone that day.  It was nice and very easy to help them, and in return they helped me. 

Andrew Schorr:

Social media has been a great tool for you. 

Meredith Wooten:

Huge.  And easy on the pocketbook, too—I had to make all those phone calls. 

Andrew Schorr:

So, Suzanne, how about you?  You cried with your mother, when you were initially diagnosed, and you seem to be sort of even-Steven to me, very calm on the outside.  What happened when you were told again, that it had relapsed, and how did you communicate it to others? 

Suzanne Hyte:

I remember when I was told—it was actually my parents that got the news from the surgeon when I was still waking up.  And it wasn't a surprise, because I had a core biopsy before, and they said, this doesn't look good, so I knew, going into that biopsy, that it probably was back.  And I remember shedding a few tears in the car, with my dad, when he told me that, and then began the process of informing people.  I believe my parents helped me reach out to my siblings, and then the word just gets out.  They tell friends, people hear at church and that type of thing. 

And then people would always call, and they would check in, even if it wasn't talking to me, because there were days, where I didn't want to talk, just because I was so tired.  But I had mom or dad that was able to help communicate those things to them. 

Yeah, I always appreciate it as well, when people asked how my parents were doing, as the caretakers, because a cancer diagnosis takes a toll on them as well, and so it meant a lot to me, as the patient, when others were looking out for them, so that it wasn't always about me.  I don't necessarily like being the center of attention. Like Meredith, when people would ask me about it, I remember one of the first things I said was, well, I guess I still have something to learn through this experience.  And I likewise just kept that positive attitude, and I think that did help other people because they thought well, she's hopeful about it, then we can be hopeful too.

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 June 15, 2016