Tuesday, March 29, 2016

The Emotional Side of Cancer

My last couple of posts (one dealing with my most recent Oncologist visit and the other with the idea of PT-CAT scans) have made me think again about the emotional part of Follicular Lymphoma.

As I've mentioned before, and mentioned again in the last post, I feel like Follicular Lymphoma is as much an emotional disease as it is a physical disease. For many of us, FL involves a whole lot of waiting. And watching. And worrying. And wondering. For many of us, we spend more time without physical symptoms than we do with them. But the waiting and the worrying is with us all that time.

The stress, the sleepness nights, the randomly breaking into tears (as I did for a couple of weeks after I was first diagnosed) -- that's all real, and harmful in their own way. Oncologists don't always think about those things. Especially when we're first diagnosed, an oncologist who is familiar with Follicular Lymphoma might be thinking, "This guy has nothing to worry about -- a slow-growing cancer like FL? He could be alive for another 30 years." But we as patients don't have that broad perspective. We're thinking more about what's immediately in front of us -- CANCER, in big, bold letters, and everything that goes along with that word.

I was interviewed recently by someone who was planning a presentation in front of a group of oncologists, and he asked what I thought they should know about Follicular Lymphoma. I said they need to pay more attention to the emotional aspects of the disease.

I don't know if that message ever got to them.

All of this got me thinking about a link that I have had tucked away for a few months. I have linked to the radio show Yale Cancer Center Answers before, and they did a show in December called "Managing the Emotional Side Effects of Cancer." Answers is a weekly radio show, hosted by oncologists from the Yale Cancer Center, featuring an expert in some cancer -related field every week. Sometimes it's an expert in a particular cancer, but sometimes it's someone who has advice for care-givers, or healthy life styles, or something that's not an update about research in a particular type of cancer. The shows are all archived online.

For the December show on Emotion, the guest was Dr. David Sells, a research scientist in Psychology at Yale Medical School. He discussed some of the emotional issues that cancer patients go through, and some ways to deal with them. You can listen to the show here (Scroll down to the December 13, 2015 show), or you can read a transcript of the show here.

There were a few things that stood out for me:

  • We all react differently when we get a cancer diagnosis. This was something that was said several times during the show. But something they discussed made me think -- some people identify themselves as cancer patients, and some people as cancer survivors. There can be a real difference between those two ways of looking at yourself. Sometimes being a patient means always having someone else take care of you. Being a survivor means you've already been through a battle and came out the other side. So the way we label ourselves can effect our emotions. 
  • What's interesting, though, is that I usually refer to myself as a cancer patient, not a survivor. Anyone who has been diagnosed with cancer and is still alive is a survivor (according to the folks at the National Cancer Survivors Day Foundation). Still, in my experience, people think of "survivor" as "I'm done with treatment and the doctor says I'm OK." I know I'm in this for a long time, probably, so I don't want to get over-confident. I stay with "patient." That doesn't mean I'm dealing with negative emotions because of it. It means I'm still fighting. I label myself any way I want. that's empowerment.
  • Another point that Dr. Sales made was on how people deal with the emotions. There are lots of ways -- seeing a therapist, joining a support group, throwing yourself into a hobby, sharing with a trusted friend. For me, it was finding an online support group. there is something very good (which comes up on the radio show) about sharing your feelings with someone who has been through the same thing, or something similar. It helps to know you aren't going crazy when someone else tells you they've been through the same thing and have felt the same way. 
  • For me, the support group was wonderful. I met some great people who understood how I was feeling and some who taught me a lot about lymphoma (and still do). I couldn't have done it by myself, and I don't think anyone should try. With Follicular Lymphoma, there's just too much to deal with. we have lots of time to think, and that can be a bad thing if we let it be. I still check in with the support group every day. I don't contribute much anymore, but I like to know what people are talking about, and I learn some new things, and occasionally I get an update from an old friend. It's still a valuable resource.
I don't know if the emotional side of cancer will ever get better, even as newer treatments are being discovered. Maybe some day, even if there's no outright cure, we find something that lets us control it and just turn it into a chronic disease. Maybe then "cancer" won't be CANCER, and we won't have the automatic panic that comes with it now.

Maybe some day the emotion we have to deal with is boredom -- taking a pill every day will just get old, and the cancer walks every year will seem like a chore, and we'll get tired of the ribbons and bracelets.

But for now, it's nice to know that other people feel the same worries that we do, and there are ways of making it all feel just a little bit easier.

Thank you all for listening.



Rodrigo Carvalho said...

Dear Bob.
I really wanted to speak english better than I do just to tell how (good) emotion you and your blog bring to me. You really can understand our feeling and make me feel I am not alone.
I used to say to my parents and friends that if you have a cancer, get FL. One of the things that make me feel calm about our desease is to know that I have someone by my side who will comprehend all my sadness and hopefulness,
joy and gratefulness. That person is you and all our friends in lymphobob.
All I can say is THANK YOU.
You're part of our lifes.

William May said...

Great post Bob. It would be great if you tell us what support groups you participate in.

Anonymous said...

Thank you for another great post. I think of myself as a cancer patient, as I am on W & W, no treatment yet.
Yes, please share the support groups link.

Lymphomaniac said...

Hi folks.
Thanks for your comments.
The support group I have been a part of for years is run through a forum on lymphoma.com. This link should get you there:
They're a great group, though it has certainly changed over the years as people have had their needs met in different ways. But there is a core group of active folks that are very supportive, very knowledgeable, and very smart.
I hope they are as helpful for you as they have been for me.

Barbara Patch said...

I wish there was a like botton on here. ☺️

Lymphomaniac said...

Barbara, the smiley face works just as well!