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The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.
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The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.
Every morning, I wake up and scroll through Instagram to read the stories posted on The Cancer Patient (TCP) account. This account and online community has personally brought me laughter and comfort on my darkest days. This week, I got a chance to speak with the individual behind the little yellow “hold your breath” emoji and learn how a simple IG account is now one of the most revolutionary cancer communities globally.
Jen: First, let’s start with the question I’m sure everyone reading this article is dying to know: who is TCP?
TCP: First of all, chances are if you’re following this page you’re probably either currently or were dying. I prefer to remain anonymous. I can see myself as a private person, but it has more to do with being able to share versatile content, regardless of age and gender. For the audience to see the posts as their own relatable experience and not my own. The content I make is not just my experience alone but also the experiences of the different stories and perspectives that I hear from the cancer fam. Also, I wanted to avoid talking about myself on the page. I thought this page should always be community oriented, and not about me.
Jen: Tell me a little about your personal cancer story?
TCP: I was diagnosed with primary mediastinal B-cell lymphoma, PMBCL. I had it twice. My first line treatment was RCHOP, second line was RICE. And then I had a stem cell transplant on February 4th 2016 and 20 rounds of radiation after that.
Jen: February 4th is a special anniversary for you. Tell me about it!
TCP: The day I got my stem cells – new bone marrow who dis! It’s my fucking rebirthday. Five years is the “cured” mark for the type of cancer I had. I just feel so many mixed emotions. Like you want to make a big deal out of it, but at the same time…. Damn. Six years ago, I was told I only had a 50% chance to live, and then to make it through the next five years. When I was diagnosed, they said I only had a 5% chance of relapse, and then I relapsed. Next statistic was 50%. To be on the better side of that statistic this time around, obviously fills me with a lot of gratitude. Gratitude, and a dash of survivor’s guilt. Survivorship is rough and has its own set of struggles compared to while you’re in active treatment. Since finishing treatment and looking back on the past five years, it felt like I was somewhere between losing my mind and finding my soul. It’s like learning to let go of who you were so you can learn more about your new self and become the person you need to be. From navigating scanxiety and health insurance issues, for my routine follow-ups and dealing with the long term side effects and its impact on my mental health, to celebrating each milestone and meeting and losing amazing people that I’ve met through the years. It’s all so humbling, bittersweet and surreal.
Jen: You mention survivor’s guilt, and I know that’s something a lot of us struggle with. You see a lot of loss in running this page, can you speak to that more?
TCP: Being as active as I am in the cancer community, loss is inevitable. It’s a part of the journey. Meeting and loosing these people. When I look back, at every milestone, cancerversary, rebirthday, remission, it’s always part of it. When you look back and reflect- the people who’ve touched your life and how you’ve touched their life as well. Aside from the survivor’s guilt, it’s also how you look back at your own personal struggles, and the struggles that the people around you had to go through, and how much you owe it to those people that you got here.
Jen: You’ve shared the word community so much. Tell me more about how people have touched your life.
TCP: When I first heard that I relapsed, I strongly considered not doing treatment. I didn’t even tell my family this at the time, but I thought maybe I should just go back home and wait it out. I talked to one of my closest friends right now, who I met shortly after I relapsed, and she had just finished a stem cell transplant. She told me what she was going through regarding biopsies, hospital stays, and chemo. To be able to connect to her and hear her experience firsthand, even the nitty gritty bad parts, I thought well damn, she fucking survived! If she could do it, I could do it too!
That was pretty much the first of many instances of how support and community, whether in-person or online has a huge impact on me. It was a monumental part of what I went through. From almost not wanting to do treatment, to talking to someone who had been there before. It was very uplifting. Since then, it was ingrained in me that online cancer support is a resource, something that I can reach out too. Even if someone is 1,000 miles away from me, they can still identify with what I’m going through. To have your own feelings validated and acknowledged through someone else makes a world of a difference.
Jen: So that brings us to your own online community. How did this start?
TCP: I need to go deeper on the back story. It all started with cancer memes. Shortly after my First Descents trip, one of my camp mates, Ashley, found out her breast cancer came back, and was now metastatic. She was just having a hard time with treatments and tried some alternate routes. But her cancer kept progressing, treatment wasn’t working, and she couldn’t tolerate the treatment anymore. She was transitioning to hospice, and I talked to her almost every day. She told me “I’m so sick and tired of people checking on me”. Texts from people demanding for updates. People who donated to her go fund me or sent her coloring books and casseroles. You feel somewhat obliged to respond. I listened to her, and it just hit me- I think I should just send her stuff to cheer her up. I started making cancer memes and sending them to cheer her up.
I was in a lymphoma support group on Facebook, that was very informal and inappropriate, and memes are constantly shared. I started sharing the memes I sent to Ashley in this group and posting a few other places as well.
And I slowly started noticing that every time I posted a meme it had a lot of humor, but it hits real, and catalyzed real ass discussions about what we go through. It hits you right in the feels, and the flow of conversation and discussion come out naturally. Such hard hitting issues, portrayed in a lighthearted way, makes it easier to talk about.
From that, my friends said I should start a page, and I thought that’s not a bad idea! I liked the template of one of my favorite nursing pages (@nurselifern) with the meme/community page format. Everyone knows the story feed is where the real tea is at.
Jen: How did you decide on a name and profile pic, both of which have become iconic legends in the cancer community?
TCP: So the page was started in October 2018. The first thing that popped into my head was that the profile picture should be the hold your breath face [from the CT machines]. The page was private for three weeks, because I didn’t like the names I was sorting through. But once I got The Cancer Patient, with the profile pic, it just fit.
Once I got the name though, I still had so much self-doubt such as “can I really talk about cancer on a daily basis? Can I really come up with content and memes and sustain this page? Am I going to run out of gas?” So after three weeks, I told myself I wanted to create 100 memes before I started posting, just to reassure myself I could sustain the page for one month. I was sending memes to my friends, who said just fucking start the page already!
I wanted to post every day, and not talk about myself, as this is a community page. Maintain anonymity. The first few days, my name was in the bio and then I took it out. My goal for the page was to get 100 followers a week. In three weeks, I was at 1,000. I knew I had the skill set to pull off a support page fueled by humor and shared experiences, but I never expected it to grow that fast!
Jen: Running the page involves dealing closely with cancer on a daily basis. Personally, I would be so overwhelmed to do that. How do you manage?
TCP: There are days that it is overwhelming. I think a lot of it has to do with having a mental and emotional stamina to withstand hearing all the stories and converting those stories into content.
As a registered nurse, there’s a part of me that knows how to compartmentalize. Also, I started this two years out from my treatment. I don’t think I would have been able to pull this off in the middle of treatment.
Jen: This page involves a lot of time and effort. What keeps you doing it?
TCP: I have an insatiable need to pay it forward. So many people around me helped me get through treatment. People I met online, various support groups, non-profits, organizations – I wouldn’t be here today if it weren’t for their help. I’ve met strangers from the internet, people I didn’t know at all, who offered me money, groceries, or stuff like that. I may never be able to pay them all back but knowing that I have the skill set and the platform to impact and help a lot of people and having the opportunity to pay it forward is what drives me to do it.
Jen: Tell me a little bit about how it got started?
TCP: When I started the page in 2018, I had a hand-me-down iPhone 5S from my brother. For the first two months, I just cropped out the watermark, I didn’t even buy the meme app! Then after I got to almost 10,000 followers, I was like ok maybe I can finally spend $2/month to pay for the app. It’s just crazy, looking back, I started with an old iPhone and sharing memes. And now there’s a community from all over the world, and 60,000 followers.
Jen: There are so many cancer resources and communities now. What makes TCP different and such a resounding success?
TCP: I think what makes the page successful is that I don’t conform to the societal demands of what a cancer patient should look like. Most cancer pages are about being inspirational, strong, brave, with motivational quotes with sunshine and rainbows. And here I come with morbid ass memes, talking about nausea, Ativan, not trusting a fart during treatment and other questionable (but real) coping mechanisms. It identifies more with the everyday “typical” cancer patient. Sure, we have all these inspirational stories about people who run a marathon or climb a mountain after treatment. And that is amazing. But not every cancer patient can do that. Probably actually only 5%. I talk about the average joe cancer patient. No one talks about how we spend sleepless hours Googling our prognosis. Instead of an article about “How to get through Scanxiety” I’m over here drinking a mimosa and obsessively refreshing MyChart. It’s not about the picturesque and triumphant stories, which are great. But people sometimes see cancer as some whimsical, inspirational phase in your life. We fail to acknowledge the real issues in our community Real issues are ignored because we are too busy making cancer look inspirational. There’s always this perception that going through a life-threatening illness is supposed to give you some big life purpose. Not everyone has that. Going through this illness could just be a shitty part of your life. It’s great that some people have got a purpose and learned things about themselves because of cancer, but it’s also ok if you’re not able to do that. And I think both sides of the coin are shown in the page.
Jen: Working full-time as a nurse, plus running this page is a lot. However, you continue to run this by yourself. Why do you keep it just you?
TCP: I don’t think it works to hand it over to someone else. I’m not saying no one else could, but I just think that there will be a difference if someone else would run the page. It’s also a lot to take on, and I can’t even imagine asking someone. It’s a huge responsibility. Messages of death, and so much more- it’s very intense. I got a DM from a 15 yr. old kid, asking “what does hospice mean ‘cause I overheard them talking about my mom, she’s in hospice?”. How the fuck do I answer this? I’m not a therapist, I’m a nurse. It’s different when you’re wearing scrubs and talking to a patient, as opposed to a DM. At this point, it’s not fair to delegate to other people. I do ask for help in other ways from people, especially regarding creating content, coming up with captions, or asking them if a joke is funny or lame.
Jen: How many DM’s do you get daily?
TCP: If there’s an active discussion, at least 50. There are times I get busy or need to take a step back. Those days, I probably get 20 DMs. Sometimes I sit on a question I’m sent. And I sometimes forget to post because I’m just one person, and then people get pissed…
Jen: The reach of TCP is international. Any where you haven’t heard from?
TCP: No Nigerian prince has messaged me yet!! I haven’t heard a lot from Africa, except for South Africa. But a lot from the Middle East, India, Israel, New Zealand, and other Asian countries follow the page.
Jen: What’s the biggest struggle with TCP page?
TCP: Having to navigate people asking for medical advice. As a nurse myself, I want to only share sound medical advice. And sometimes there’s no way for me to know that. It’s beyond my scope. Sometimes I choose not to share people asking for specific medical advice, because this is not the right platform for it, and those conversations are best had with your doctor. And there can be so much differing information on a drug out there, and there is no way for me to personally know what’s right to you. I really struggle with people asking for medical advice.
I think there’s certain medical things we can discuss, like dealing with side effects, but a lot of times it is a conversation best had with your doctor.
Jen: Any future plans for TCP?
TCP: I’ve got a couple projects that I would want to keep a surprise for now. A few things in store to expand the platform. But I plan to continue to do what I’m doing. I never expected the page to grow. I never expected it to be a worldwide platform where people actually convene and talk about real shit. I don’t have any lofty goals, aside from the upcoming projects. Maybe a collaboration to make an app if the right opportunity came along. I work full-time. I try my best not to bite off more than I can chew. I’m also in the early phases of my nursing career and am working on that. I have more attainable goals for my nursing career at present. Also, I’m opposed to putting ads on my page.
Jen: What’s the most memorable discussion you have had as TCP?
TCP: Some of you might remember this, it’s saved in my story highlights. I interacted with someone from Denmark, and she had a rare type of cancer. One of my friends here had the same cancer, so I was like oh wow! I actually know this cancer! She had never met anyone with that type of cancer, and I connected them. Eventually her treatment stopped working. And she asked me, “can you make a discussion about what it’s like to die from cancer”. I was so taken aback. She wanted to know what was going to happen, and what she was in for. Definitely one of the most memorable and pure discussions on that page. Like 100% of the time when I’m doing discussions, it’s me winging it. I’m not a therapist, or a trained mental health professional. But to be able to have that platform and an opportunity this important…what to expect when you’re dying from cancer. To have that discussion- it was so heavy, but so fulfilling and rewarding at the same time. To help her transition and have peace and acceptance of what’s coming.
Jen: Thank you so much for sharing your heart and soul today. I know it’s an honor and privilege to get to hear a bit about the hidden person behind TCP. Any final parting words to these readers?
TCP: Don’t let anyone tell you how to have cancer and a happy fucking rebirthday to me!
Here are some names that TCP almost could have been…
@thatchemolife
@chemohumor
@chemo_humor
@fthatcancer
@livelaughcancer
13 Questions to Get to Know TCP Better!
TCP: Sweet. Cookies and Crème.
TCP: Hugo, Bentley, Wren.
TCP: Come on…I can’t answer that.
TCP: El Nido Palawan
TCP: Japanese and Italian.
TCP: Coffee
TCP: I fucking hate Gatorade now.
TCP: Chicken Sotanghon
TCP: Charger and cell phone
TCP: Drive, by Incubus
TCP: I heard this second hand from the nurses…but this happened the day before my SCT. I woke up in the middle of the night (I have no memory of this) and was just screaming and asking for Ativan and ginger ale. I can just imagine how fucked up and funny I looked and sounded at the moment.
TCP: Dating and relationships, infertility, dealing with side effects.
TCP: Next question.
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Twitter – @ogcancerpatient
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.org/contact/submissions/.
Elephants and Tea is a trademark of the Steven G. Cancer Foundation, a registered 501(c)(3) nonprofit under federal tax guidelines.
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