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Coping With the Emotional Impact of CLL

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Published on February 3, 2020

Key Takeaways

  • The emotional impact of a cancer diagnosis and changes to the physical self can cause patients to feel a loss of identity.
  • Mindfulness can be used as a coping mechanism to help patients deal with uncertainty.

Chronic lymphocytic leukemia patient Adrian Warnock shares his diagnosis story, which he describes as “a tsunami hitting my whole life, my whole family and my whole career,” and how he learned to cope. Clinical social worker Maryellen Collamore also joins to discuss the emotional impact of receiving a cancer diagnosis, psychological and physical challenges patients face and some coping strategies. Watch now to hear their expert perspectives.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript | Coping With the Emotional Impact of CLL

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.

Michele Nadeem-Baker:       

Emotionally, how did you handle this, Adrian, just a couple of years ago—two-and-a-half years ago, as you said?

Adrian Warnock:       

I don’t mind admitting that it was like a tsunami hitting my whole life, my whole family, and my whole career. Really, everything was left in tatters. There’s no other way of putting it. And, it happened so suddenly. To me, my life now exists in two halves—the half before April the 28th, 2017, and the half after it, even though it’s far from half. I was obviously 46 when I was unwell, and it’s only been two and a half years, but I feel like a different person. 

I look back on the old me—I talk often about the old me, and the old me was a very different person, really. The thing is, everything gets robbed from you, or it can do. For me, I did try and get back to work for a while, but it was not really working. I don’t know how it is in the U.S., but in the U.K., we have this thing called reasonable adaptions that your companies are supposed to make for you, so they’re supposed to be adapting to a reasonable level given the disability that you have. And, my company did far more than that. They allowed me to work from home 90 percent of the time. I had a colleague who ended up covering all of my travel that they should have done—this wasn’t immediate, but over time.

I tried to get back to work after that pneumonia, and it was an absolute, real, utter disaster because it was truncated by me not being able to cope, and basically lying in bed, answering a couple of emails, and doing a few phone calls, and not a lot else. I would occasionally haul myself out of the house and into the office, but it wasn’t easy.

And so, of course, you then feel all that sense of achievement, all that sense of self-worth just ebbing away. You feel really guilty. I did my best to hand over to a colleague and try and finish a few projects during those months, and actually, there are some things I look back on that I did manage to achieve during those months, but as a high achiever—I was actually the medical director of a pharmaceutical company working in researching drugs, helping to get drugs onto the market, and helping to explain the results of clinical trials, and all of that, and then, to suddenly be unable to do any of that, and, at my worst, literally need full nursing care.

So, you can imagine there’s no real easy way of saying it, but to say it’s been like a tsunami in my life, and emotionally, that’s been very much the case at times. Obviously, you do learn certain ways of coping with that and dealing with that. I’m not ashamed to admit I’ve had counseling and done various things like that. And yeah, I cope with it better now, but there are times when it’s bad, and there are times when it’s not so bad, but I wouldn’t say that I’ve recovered anything like the quality of life at this point.

Michele Nadeem-Baker:       

Maryellen, when someone like Adrian, myself, or any others here have this happen, and it’s really—I know this doesn’t happen to all CLL patients, but to many, their lives have just really changed. Not necessarily – other things come with that, such as not being able to earn money. Adrian, I know you have children. Maryellen, what do you suggest to all of us out there?

Maryellen Collamore:

Adrian and Michele, I appreciate you sharing this side of things. I think there is this culture—it’s starting to change—this idea that you should bounce back to the normal you or the “you” you were before your diagnosis, and that just isn’t the case. I think number one, the step of acknowledging that this was a tsunami, this was a huge shift over time that causes really significant loss—number one, loss of identity—but then, certainly, it trickles down to loss of finances, loss of maybe relationships in your life that people don’t understand what you’re dealing with.

Physical health can change—fatigue, as Edward mentioned—and things that change for your physical self—it all impacts, then, our emotional health, which Michele is bringing up. Again, step number one is the awareness of that, and also, normalizing that. So, when I meet with patients, it’s really taking a step back and saying, “This is really difficult,” and it sounds so simple to reflect on that, but instead of diving forward with what treatment is next, where can I go, how can I make my life what it was, we really have to say what is my life now, where am I, and what are my new priorities? And, that can look different day to day, depending on where you are in that journey. But, acknowledgement is a really big piece.

Adrian Warnock:       

I think one of the challenges for me personally—I’m sure it must be the case for a lot of others as well—is the way in which the situation changes so dramatically. I was really ill with pneumonia, I come out of hospital, I’m starting to feel a little bit better, and the doctors all think that I’m going to recover.

So then, you start to think, “Oh yeah, this is about recovery, I’ll be able to get back,” and then you suddenly realize, “Hang on, I’m trying to cling on here with my fingernails, and this isn’t working,” and then, suddenly, something really more serious happens again, and maybe—even right now, I still don’t know—it’s still six, seven months after FCR now, and I’m told that people do recover over time, so I guess it’s possible. I don’t know that I might get back to my work. Not sure. So, you’re in that huge uncertainty, and I think that’s almost worse.

This is going to sound really weird, but I sometimes think it would almost be better if you knew. If someone said, “Adrian, you’re never going to go to work again,” or “You’re never going to be able to walk again”—in a weird way, that would almost be easier to adapt to because you’re constantly adapting to something that’s changing all the time—at least, I have been. 

Michele Nadeem-Baker:       

Definitely. That uncertainty is the most challenging part. If you did have that concrete answer, even if it was a negative answer, psychologically, we can process that more easily. But, when it’s this uncertainty and unpredictability of what you’re dealing with, day to day, sometimes hour to hour, that is really taxing psychologically.

So, I work with patients to think about other coping skills that they’ve used in challenging situations in the past and really try to incorporate those into their day-to-day life. Something that has been really helpful and is getting more buzz now in social media is mindfulness, being present-focused, doing some really small mindfulness meditation exercises, which can help—it doesn’t take away the uncertainty, but it does take away the intensity of those thoughts that we’re having. So, things like that.

Adrian Warnock:       

Yeah. I think the critical thing for me is actually acknowledging them. That’s one of the things mindfulness allows you to do. I often talk about putting it away on the shelf, and you can do that. That is a coping mechanism—just shove it away—but the trouble…

Michele Nadeem-Baker:       

…you need to know what you’re shoving away.

Adrian Warnock:       

Yeah, you do, and the trouble is if you don’t, it gets stronger and stronger, and then, when it does come back—so, I would have these scenarios where I might be fine for a while, but then, boom! It would be in your head. I’ve actually done a whole mindfulness course, and I find that very helpful, so I agree that mindfulness is great, just because it’s trying to say, “Look, instead of trying to deny how you feel, or pretend it’s not there, or indeed, actually, tell everyone”—because that’s the other thing I found didn’t really necessarily help, is expecting friends and family to be able to understand.

But actually, if you then—I need somehow to cope on my own, but actually, with the mindfulness, it encourages you to go, “You know what? This is rough. I do feel like this.” But then, somehow, as you say, it takes the edge off it, and you’re able to then recognize that there are other good things happening in your life as well, or things to be grateful for, et cetera.

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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