Cancer. It’s a scary word that is often treated like He Who Must Not Named. But we desperately need to be having a conversation about the big C and the stigmas that not only surround cancer patients, but those who are living in remission as well.
Gina, an old high school friend of mine, battled stage 3 nodular sclerosis hodgkin lymphoma, and has been living in remission for the past 6 years. She wrote a post on Facebook for World Cancer Day speaking her truth about her cancer experience. But what stood out to me was her perspective on the matter. She could have written a long text explaining how thankful she is to have beaten cancer and left it at that. Which, don’t get me wrong, is also a very special post to make. But what really hit me in the gut is the point she was trying to make: While being extremely happy to be alive and in remission for last 6 years, she’s allowed to be proud of her experience, but also hate what caused it in the first place.
I am allowed to be proud of my experiences. I am also allowed to hate the thing that cause them. I don’t deserve to have them minimized because it’s my story to tell and I get to choose how to tell it. – Gina; Facebook
To better understand her story, I asked her a series of questions:
Can you give a little background on the type of cancer you were diagnosed with, and the things people said to you after beating it?
“I had stage 3 nodular sclerosis Hodgkin’s Lymphoma. My understanding of it is that it’s a blood cancer that affects your lymph nodes (which help to filter your blood). It took around 9 months to get diagnosed because it seemed the doctors I saw only wanted to concentrate on the symptoms they saw as most concerning – the dermatologist was most concerned with the itching, the allergist was most concerned that I was allergic to my shampoo, my general practitioner was most concerned with my fevers and itchiness. Ultimately, it was a dermatology specialist at the Mayo Clinic in Jacksonville, FL who saw my symptoms for what they collectively were – cancer.”
There’s this belief that comes with being a cancer survivor or living in remission, that you must be overflowing with thankfulness and purpose.
“The messages I got after I reached remission were very positive. I am thankful that I had a lot of supports in that way. Mostly, people said things like “I knew you would beat it” or “you’re so strong”, and others were just expressions of happiness that I had gotten through it. I think I was most appreciative of the latter – just sharing my happiness that it was over. Because, honestly, mentally and physically, I didn’t feel very strong. So, it felt (and still feels) a little strange to hear that one. I think mostly people aren’t sure what to say, so they say what feels most comfortable. It used to annoy me, but now I feel a little more empathetic to that feeling of not knowing the “right” thing to say to someone when there really isn’t a “right” thing to say.”
Did you ever have the internal struggle of having the “live life to the fullest” mentality?
“Oh, YES – all the time and it’s very frustrating. After I reached remission, I felt like I had been given this second chance to really make something of myself or achieve my dreams (even though I really wasn’t even sure what those were). I also felt like there’s this pressure to give back in some way – as in saying a big “thank you” to the Universe for my life. But that’s a tall order, right? Sometimes, I feel a little guilty or selfish in some way if I miss or don’t want to engage in opportunities that help me feel like I’m repaying that debt. For example, I’m currently studying to become a social worker. I thought I could use that status to break into the medical field and help other cancer patients and survivors. However, I’ve since realized that medical social work is not my calling, although I greatly respect those who choose that path. I just found it to be draining and I over-connected and over-identified with the other cancer patients I met. And honestly, it was a little devastating to come to that realization. I want so bad to help be a support where I know it’s so needed, but I also know that’s not the role I was meant to fill.”
What do you wish you could destigmatize about having cancer and being a cancer survivor?
“I think the biggest thing I’d want to work in destigmatizing is the negative impact cancer can have on mental health. It often feels like it’s something that gets overlooked just because it’s kind of part of the whole cancer-package-deal. Like, of course you feel anxious about getting sick, you have cancer! And it’s not just during treatment, it’s during remission as well. I lived through some hellish spells of anxiety and depression after reaching remission, but I never really thought to seek out help because I thought it was just a normal part of the experience. If I could offer advice to my past self, or others, I’d say to get help in any way that feels most comfortable. For me that meant talk therapy with a professional, but it doesn’t always have to look that way. Processing some of that anxiety and depression with someone might have gone a long way in helping me to feeling healthier sooner. I didn’t go to therapy until nearly two years after remission, but it helped a great deal.”
(Part 2 coming soon)
Written by Teresa Johnson