There’s a rhythm to life in the hospital, a daily hum of activity, but it’s not the kind of routine Lindsay Kahn ever expected be a part of, especially not at her age. At 23, armed with degrees in English and marketing and excited to use them, Kahn’s plans were waylaid in 2015 when she was diagnosed with stage 2 refractory Hodgkin lymphoma.
Now, instead of the sounds of ringing phones, tapping keyboards and chatting co-workers, the Florida resident listens to the beeping of medical machines and the padding of nurses’ feet as she sits in a hospital, recovering from a stem cell transplant, counting the days. But she’s not waiting until she leaves there to do what she does best: put words on paper in a way that makes a difference in people’s lives. In addition to starting a blog with her best friend, Kahn has begun writing for IHadCancer.com, a website aimed at bringing together survivors of cancer, those who are still fighting the disease and their caregivers — people who understand the struggle the way no one else can.
Her first piece for the site, “12 Things Only a Cancer Survivor Can Tell You About Cancer,” has resonated with readers because it serves as a reminder that people experiencing the cancer journey, while they might feel alone, often share the same concerns and challenges, says Emily Giegerich, the organization’s director of communications.
“A lot of comments (about my article) were overwhelmingly positive,” reports Kahn, who says that writing helps keep her emotions stable as she faces cancer. “People were saying: ‘This is spot-on; I can relate to this.’ It makes me feel good that I was able to connect with others and create a piece of writing that people can really understand. I want to submit more in the future.”
The idea of a common experience is at the heart of IHadCancer.com. “This is a community that defines the idea that, although cancer is a club that no one wants to be in, at least there are really amazing people in it,” Giegerich says.
She describes IHadCancer.com as “the hybrid between Facebook.com, Match.com and Huffingtonpost.com.”
The site is a storehouse of user-written content that describes the emotions that arise throughout the cancer journey and survivorship. Users can read the posts, post their writing, connect with others and even pen messages directly to cancer, venting their feelings as they see fit.
Joiners can use the filtering tools at IHadCancer.com/people to search for others in their shoes of similar age, gender, location, type of cancer, year of diagnosis or additional characteristics. Members can then communicate with each other through private messaging, commenting, sending “hugs” or arranging to communicate offline.
A stand-out feature of the site, Giegerich says, is that “it is quickly becoming the go-to place for survivorship support. While many other cancer-specific social networking sites focus on the ins and outs of daily treatment, IHadCancer.com has a huge repository of content for all of the emotions that arise after treatment ends. For example, topics such as post-traumatic stress disorder, chemobrain, widowers and survivors’ guilt repeatedly reach thousands of people on a weekly basis."
Kahn describes the site as a “safe haven,” and says it’s a staple of her daily experience; she makes sure to read every new post.
“A lot of people around me don’t understand the experience (I’m going through),” she says. “I have a good support system, but cancer is devastating, and unless you’ve had it, it’s hard to relate. I wanted to join IHadCancer because I thought it would be a good place to go to find people who feel the same way I do.”
The fact that those peers appreciate her work means the world to her.
“It was the first time I’ve ever been published anywhere other than my own blog, and it was great to realize that it made somebody’s day to read it,” Kahn says. “Honestly, it’s one of the coolest things that has ever happened to me.”
12 Things Only a Cancer Survivor Can Tell You About Cancer
By Lindsay Kahn
The last thing an otherwise healthy 23-year-old girl would expect is a cancer diagnosis. Early into my own diagnosis, when my world was turned upside down, I wrote this list to myself to show that there's more to having cancer than the sterilized, medical side of things.
1.Your appetite isn't what it used to be
You will waste tons of food and feel guilty about spending money on something that ends up in the trash. But nothing tastes the way it did before you got sick.
2. Not everybody dies from cancer.
It is absolutely possible to be a survivor. However, it's equally possible that it kills you. The important thing is that you don't let it.
3. You find out who your real friends are.
People you haven't talked to in years play the "concerned friend" card. Get used to the attention and faux sympathy. Get used to looks of pity when you go out in public with your scars and shiny bald head. Hold the genuine people close: they'll be there long after the diagnosis.
4. Cancer doesn't care if you were totally healthy before you got sick.
It doesn't care how old you are. It doesn't care if you smoke or drink or if you use artificial sweeteners in your coffee. It doesn't care if you exercise every day and do nothing to harm your body. None of that matters. Anyone can be diagnosed any time.
5. You know your body better than anyone else.
You go for months wondering why you have a cough that can't be explained, or why you feel a little more tired than others. You can write off all your symptoms as nothing serious and something that can be fixed with some over the counter medicine. You'll let it go on for far too long because you don't have a history of being sick and no one suspects the big C word. Three doctors will tell you that you have bronchitis. The fourth one sees something more. That X-Ray and that CT Scan will come a little too late, when you are so close to death that it has its long, slender fingers wrapped around your wrist.
6. There are gut-wrenching side effects.
You've heard things about chemotherapy in passing, maybe even read some stuff in books. But none of that prepares you for the process itself. You won't be ready for the hours of watching poison slowly drip through an IV. You know it's both killing you and keeping you alive, so you can't complain. But it will make you feel so weak and so sick and so powerless that sometimes there's nothing you can do but curl up in bed and cry. It will ruin food for you and you'll walk around with the taste of metal on your tongue. Fight through the pain. It gets better.
7. You'll actually get used to needles.
Regardless of how scared you were of needles before your diagnosis, you will become used to them. You'll be poked and prodded so many times that you will feel like a pincushion. Hopefully, you'll go to a hospital and have a port installed. It's your new best friend. One entry site takes care of blood work, fluids, and your treatment.
8. You'll get attached to your doctors and nurses.
They become close friends, a second family. After all, they're working to save your life. It isn't just about a paycheck. Don't forget to thank them.
9. "Cancer Perks" are real,
and they are probably the only halfway decent thing about going through this whole ordeal. You might joke about "Cancer Perks," but at the end of the day they make things a little brighter. "Cancer Perk": because of the chemo, you don't have to shave your legs hardly ever. Your radiation treatment badge gets you into local museums for free.
10. Don't stress about your hair.
Hair follicles are fast growing cells. They will fall out during chemotherapy. Your baldness is temporary. Own it as a symbol of strength. You're fighting a battle, and bald means you're winning. Your hair will grow back.
11. You will feel losses.
You'll watch your friends' progress. You'll see them graduate. You'll see them get married. You'll see them go out and see the world and all of the beautiful things in it. You'll miss opportunities to go and Do Things. You'll feel limited. You'll feel stagnant. You'll feel unsuccessful. Just remember that it isn't your fault. Your life isn't over. It's just on hold. Your timing got a little messed up, a little slowed down. And while your life may never be the same again, you'll learn how to adjust to your "new normal." Things aren't over for you. Don't forget that when times are hardest.
12. Absolutely nothing will prepare you for the day you find out your diagnosis.
It's the hardest, scariest thing you will ever have to hear. It will change your life. It will change everything.
It sounds terribly cliché to say things like "stay strong," "stay positive," and "keep your head up." I know that. I know you've heard them a lot. I've heard them a million times myself. However, if I've learned anything in the past sixteen months, it's that having cancer puts you in a position to literally battle for your life. If this list has shed any light on the raw truth of that fact at all, then I'll have done what I set out to do. It's a long, tough, grueling journey, but the fight is worth every second.
This post was originally published on Lindsay Kahn's personal blog, Kindred, and also appears on IHadCancer.com.