Susan: “This is going to suck hard, and you have to mentally prepare yourself for how bad it’s going to suck.”
Susan is a young adult cancer survivor…one of almost seven hundred survivors, patients, caregivers, loved ones, and advocates at the 2016 CancerCon in Denver. CancerCon was started by the folks at Stupid Cancer, an organization that has become the preeminent refuge for patients diagnosed with cancer between the ages of 18 and 40.
It’s an event that is a dichotomy of epic proportions. You are surrounded by far too many young men and women who have stared at their mortality in the mirror. Yet it’s not fear that drives these unforgettable people: it’s defiance. It’s saying, “I am alive, I will control what I can, and I do not have to face this alone.”
This year’s calendar provided a window that finally did not fall squarely on my wife’s birthday, so I grabbed my Half Fund partner, Joe, and we jumped at the opportunity to imbibe the experience.
We reserved an exhibitor table and set up The Five Minute Blog. We invited patients and caregivers to sit with us to answer five questions that were designed to elicit responses that could help other patients and caregivers on their journey, in their battle, or walking the road with cancer.
But not everyone likes to talk about cancer. Many get their diagnosis, complete their treatment, and never bring it up again. It had definitely crossed my mind that people might not want to talk with us. We had hoped to get maybe ten…keeping our expectations small, but hopeful.
We got sixty-four. So much for, “I just hope we get enough response to write one blog.”
This is the first part of what is now a five-part series, with each blog covering one question. The mission of this exercise is not to tell a particular story…it’s simply to get out of the way of the wisdom and balls of everyone we had the privilege to talk with. These are their words, their advice, their generosity, and yes…sometimes their anxiety. So with that, we present to you…
Question 1: What is one thing you wish someone would have told you when you were first diagnosed?
We admit that this is a loaded question. Hindsight is a sometimes lovely, sometimes brutal mistress. And the answers ran the gamut. Like many of her fellow compatriots, Cat didn’t know what she didn’t know about cancer.
Cat: “I wish I knew you could have a full life while having cancer. When I first heard, I assumed I would be bedridden.”
Emily: “I wish I knew that it would be okay for me to be emotional, and that other people could handle it.”
Jessica: “There is no such thing as a typical course of treatment. Twenty people with the same disease, twenty different paths.”
Catherine: “It was a rush of everything. I wish I had more time to research before I started my treatment.”
Lori: “Having ovarian cancer, I didn’t know the costs related to it, not just for harvesting eggs, but the drugs for keeping them safe. It was a $6000 sticker shock. I didn’t know that there are organizations that provide assistance.”
Jen: “I wish I had known how it would be to accept being infertile as a result of my cancer. I don’t think I was emotionally prepared for that reality.”
I have not a single idea of how anyone could be prepared.
Sophie: “I just did as I was told, but I knew nothing about the treatments.”
*Raising my hand…
Eden: “I just wanted to be saved, but I actually had to do a second reconstruction because my first surgery was pretty terrible. Research your doctors. Know who is treating you.”
Christal: “As a caregiver, you can’t let up as an advocate. Shifts change. Prescriptions change. Use a notebook. Sometimes it’s just work, not all about ‘I’m here to cheer you up.’”
Chad: “It’s okay to fire your oncologist. He was a dick. He was not open to new treatment protocols, and was a one man show.”
Joy: “Advocate for yourself. If you feel a lump, don’t ignore what your body is telling you.”
Never. Ever. Your body talks to you all the time. It will often tell you what it needs.
Peter: “Stay hydrated. It’s the most important thing you can do.”
Philomina: “Have them flush your port using saline from the IV bag instead of the pre-packaged saline. The IV bag saline doesn’t have the preservative that you can taste and smell. It’s awful.”
Johanna: “I was working full time. I had started work on my dissertation. I had in my head that I could do work and school. But I didn’t take any time for me. I pushed myself so hard, and I needed to listen to my body.”
Christopher: “I didn’t have to grind out my job all week and then stay home and be the sick kid on the weekends.”
Brandie: “That I was allowed to have days that I could cry. Some days really sucked.”
And on those days, you just have to simply embrace the suck…because the suck happens. A lot.
Megan: “It’s okay that I have cancer, and as much as it fucking sucks, it’s okay. It’s not something that I feel bad about, or is my fault.”
No, it isn’t your fault. And there’s a special place in…a special place…for those who ask, “So did you do anything different that might have triggered it?”
‘Why yes, once I was playing tennis and I hit an overhead right into my opponent’s testicles. I had no idea of the BBC: Balls Bro Code. Apparently mine and his talked over a beer later that afternoon, plotting their revenge against me. Thirteen years later, lefty tried to kill me. Elephantitic apparently describes their memories, too.’
Alison: “I’m going through chemo-brain and it’s hitting me really hard. I never knew.”
Ali: “I have an 80 year-old body in a 20 year-old.”
Vanessa: “I wish someone would have told me how much your family and friends would be impacted by it. It’s not just you. They’re right along with you.”
Ashley (Caregiver): “You want to be strong, but you want to cry with your best friend, as well.”
Karissa: “I wish I knew how important it was to tell people what you need. They want to help and didn’t know how.”
Guilty as charged. I needed to learn that I didn’t have to be a superhero. It’s too tiring.
Victoria: “It’s every day. It’s not just chemo one day and then nothing the next. You are with this every…day.”
Jennifer: “I was pregnant. They told me neither of us had much of a chance to survive together. I did the treatment. My daughter is now 4.”
It’s one of the most insidious things about cancer: you don’t know what to expect. Many doctors don’t even know what to expect. The word alone conjures so many illusions in our minds, death being one of the most prevalent. Yet, I can’t tell you how many times I’ve heard from survivors, “I was given six months…five years ago.”
And even if all goes well and you get past remission into cure, it doesn’t go away. We do have great coping mechanisms, attitude being one…
Destiny: “I wish I knew up front that cancer is treatable, and at times curable. It’s not always a death sentence.”
Diane: “I wish I knew that I was going to be alive in five years.”
…but for so many, the specter is always there.
Holly: “I’m scared of relapse. I’m scared of not seeing my children grow up.”
Amanda: “The cancer is gone but the experience hasn’t ended.”
Allison: “You’re never the same after going through treatment.”
Melinda: “Everyone is changed somehow.”
Alejandra: “The impact lasts a long time, but I couldn’t allow it to define me.”
Hasti: “Everything I do is now a new and different version of myself. I remember the old me, but now I’m the new me.”
But perhaps the one thing that more people brought up than anything else was that they learned they were not alone…an island unto themselves where no one else could possibly understand.
Emily: “There are other young women who get this cancer. I thought I was an exception.”
Niki: “There is a ton of support out there if you take the time to look.”
Asia: “There is a whole group of young adult cancer patients even though we are at different hospitals.”
Lisa: “I wish I knew that there was a community like Stupid Cancer that I could belong to. The first time I went through it alone, and now I have a whole family that check up on me.”
As someone who went through it on my own island, thinking that no one could possibly know what I was going through, there is nothing more important than a peer to talk you off the ledge; someone who has been there, someone who knows, someone who gets it. Nothing prepares you for those three words that instantaneously change your life, but there is something so empowering knowing that there is someone who actually understands, who can help to light the unimaginable darkness that a diagnosis is ready, willing, and able to consume you with.
Matthew (Founder of Stupid Cancer): “This is really going to suck but we’re going to do our best to make it suck less than it has to. Oh and by the way, here are a dozen specific support resources for you that have been scientifically proven to make it suck a little less.”
Rachel: “That there is always hope, you can be a new statistic.”
Marsha: “I was told by many that I was in an impossible situation, but I wasn’t. I went from a hole in the boat…to ‘whole’ in the boat.”
Yes you did, Marsha. Yes you did.
If you have cancer and you need to talk but don’t know quite where to turn,Instapeer is one of the best places to start. The app is free, and is available on most IOS and Android devices.
Dan Duffy is co-founder of the Half Fund – a mission dedicated to sharing stories about cancer. This is the first of a five-part series for the Huffington Post.
You can read more of Dan’s writings in his book, The Half Book: He’s Taking His Ball and Going Home which is available on Amazon in both print and e-versions.