Sarah: "You have to have someone to talk to. It's incredibly awful to go through this without a support system."
It is one of the biggest things you don't realize...how the people you meet will change your life. When you get diagnosed with cancer, it's such a lonely feeling. No one could possibly know how you feel. What you don't realize is that there are so many people who can actually relate. At this year's CancerCon from Stupid Cancer, I met hundreds of them.
Emily: "As much as your friends and family care about you, they're not going to quite understand what you're going through."
Melissa: "My cancer friends are the most invaluable thing I've received."
Vera: "It's incredible to be around people who have gone through the same cancer experience."
Victoria: "There is someone out there like you, and don't stop looking for them until you find them."
Hindsight is a beautiful thing. It's where the epiphanic moments come rushing in to fill the gaps of the mind-blowing confusion that hits you when you're first diagnosed with cancer, or when your loved one is first diagnosed. While our last blog dealt with what we didn't know going in, this one deals with what we now know as patients, survivors, and caregivers.
When I was diagnosed and went through treatment, I did what many folks do in this situation: I took the weight of the world on my shoulders. I did it so that I could lift my family and friends out of their sadness. It was also a sense of false-balls...that I could take whatever cancer threw at me. I became even more self-sufficient than I already was...and it was shockingly isolating.
Alejandra: "Don't be afraid to allow people into your heart and to allow yourself to be helped. Not out of pity, but out of support. Don't confuse the two."
Jennifer: "It was necessary to have people step in to be me, when I couldn't be me."
Peter: "I'm a single dad. I was divorced 6 months before I was diagnosed. I felt I had to do it by myself, but I didn't."
Yet the one place where I "let go" in a way was in regards to my own advocacy. Maybe it was because I trusted my oncologist.
Catherine: "Get a close relationship with your oncologist. They are taking your life in their hands and you need to be close to them and trust them."
Or maybe it was because I didn't think it was right to question my team. After all, how could I have a qualified opinion?
Megan: "It can be hard to stand up for yourself."
Sophie: "Many people think, 'Why would I ask questions? They're not going to stop, anyway.'"
Niki: "You need to be your own best advocate. Your doctors aren't going through what you're going through. Communicate clearly, mention everything. Nothing is crazy."
Lori: "If you cannot be your own advocate, find someone to go with you to all your appointments. Record your appointments. And then go back through them, type the notes, and make sure you understand everything."
Melinda: "If there's some part of your treatment that you're unhappy about, don't be afraid to challenge the health care pros. It's your body."
Amanda: "Even if you only have a day to decide, know all of your options before you start a treatment plan."
This is an issue that I've seen a lot, and even experienced myself a little bit. Sixteen days after I found my lump, I started chemotherapy. But from some of the people I met at CancerCon, mine wasn't all that short, comparatively.
Liz: "There is a mentality that unless you start treatment immediately, you're going to die."
Debbie, a nurse: "Don't feel railroaded...be comfortable about asking about what we're going to do to your body."
Christal: "A prognosis and a doctor's opinion is not a final word."
Destiny: "Go with your gut."
Angie: "No one will fight as hard for you and your life as you will fight for yourself."
I remember there were times in my treatment when it felt like all I did was fight. A side effect. A drug reaction. My own self-consciousness. Fear. Sadness.
Katy: "We all feel insecure about different parts of our body or how to interact with people. We don't feel normal."
Kalina: "Losing your hair doesn't define your femininity."
And apparently, it can teach us things we never knew...or really thought about.
Jessica: "Cloth motorcycle skullcaps are the greatest thing ever."
Brandie: "Invest in nice hats. Don't get hats made out of cheap material. Instead of 5 crappy hats, get 2 nice ones. Your head will thank you."
The way to tell is by rubbing the material on the inside of your arm. If it feels scratchy there, it will feel scratchy on your head, too.
Karissa: "Depression is a common side effect of chemo. Sunshine helps."
Marsha: "Your thoughts are powerful things. That is one thing in which you do have control. And whatever challenge you face, you always have the choice to love and embrace, or fear and resist."
Wait until you hear what Marsha did. She got tired of looking up at her bags of chemo being pumped into her body, so she said, "Today, I want to be infused with love and light." So she made up her own labels for the bags.
Amazingly, the nurses got into it. "What are we infusing you with today?"
And now, anyone can use them. How awesome is that?
Lisa: "Try to find a balance between everything because there are so many parts of you: the cancer part, the student part, the family person."
Balance is often one of the biggest struggles any of us have. And it's not the just the physical balance. Emotional balance can sometimes be way harder to handle.
Eden: "If you worry and stress over things you can't control, you get lost."
Rico: "Take an hour at a time, a minute at a time. Some days, you're going to feel like shit. So be it."
Alison: "It's okay to feel whatever you're feeling, and they are completely valid no matter what they are."
Ashley, a caregiver: "When a patient is in need of space, give it to them. Let them go through it and process it in their own way, and then let them come to you."
Vanessa: "Your life is a river. You will hit dams...and eventually, they'll dissipate."
Kelly: "Health is important. But, you don't have to stop your life."
Todd: "Get busy living, and follow your instincts."
And perhaps some of the best advice I received from CancerCon was this:
Sierra: "Everyone's experience is different. What you experience, you need to share. It will help."
Alyssa: "To talk about it is therapeutic, and it teaches people."
Holly: "Stock up on Zofran. Go to Mexico for extra if you have to."
I have no idea if that's legal.
Hasti: "Your journey is valid, no matter what type, how easy or hard it is, and you shouldn't feel less because of stage 1 as opposed to stage 4."
Diane: "My time is precious, and I'm very selective who I spend my time with."
I really need to learn this.
Casey: "Have fun when you can because its more fun to have a puking party then a puking disaster."
I think we'll just leave it here...for now...
At the writing of this blog, I learned of the devastating passing of someone we met at CancerCon. While she declined to sit with us, she encouraged us that what we were trying to do was important. God rest you, Brittany DiDonato, and God bless all who are suffering from this loss.