Kalina: “I would have let my family take photos of me.”
It was a punch in the gut the second the words left her lips. Kalina was one of sixty-four people who shared their stories with us during CancerCon…the largest gathering of young-adult cancer patients, survivors, and advocates in the world.
When Kalina said she would have let her family take photos of her, it instantaneously brought me back to one of my only regrets in life: the absence of a physical record of me with cancer. I, too, was one who never wanted to see myself sick. I forbade anyone from taking my picture. If there was nothing tangible to look at, did it even really happen?
Sometimes, I’m astounded by how wrong some of my choices have been for me. So many wonderful things happened during treatment, and I have nothing but my memories to hold and treasure. I have yet to get over that decision…a realization I came to as Kalina answered question number three of our five question “Five Minute Blog” at CancerCon.
And as it turned out, Kalina wasn’t the only one who thought that way.
Victoria: “I would have taken more videos. I have small children…I wish I had those tangible memories.”
Juliana: “I wish I had kept a journal or blog…looking back, it’s hard to remember.”
Kim: “I would have documented more and been more open with my friends.”
Katy: “I kept to myself a lot. No one knew what I was going through. It was pretty lonely.”
Rachel: “I should have talked about it more. I needed something that didn’t quite exist, or if it did…I didn’t know about it. Stupid Cancer really helped.”
Stupid Cancer created a paradigm shift for young adults who are diagnosed. It empowered many people to take the first step of telling their story…giving a voice to the formerly voiceless. It even helped others realize that many fears are worth facing and overcoming.
Hailey: “I would have gotten more involved with the cancer community. I was scared to make friends with cancer patients because the reality is you can die. So I was very scared to make connections with people further along then I. But now having lost people to cancer, I wish I would have used that voice more.”
Maybe others felt the way I did, but I thought if I talked about it, it would simply be a reminder that I was in the fight of my life. If there was ever a time to bury my head in the sand and pretend everything was perfect, this was it.
Megan: “It’s happening and I don’t want to talk about it, but I wish I would have addressed it head on at the time.”
On the other side of the coin, I didn’t want to be a burden. I knew how bad it was, so I thought it almost selfish to bring my family and friends into my misery. Plus, part of me was a little bit worried by their reaction. What if they’re afraid?
Diane: “I would not have told my mother. I ended up having to console her. I would have set better boundaries.”
What if they don’t come around?
Ashley, a caregiver: “I would have wanted to be there sooner, from the beginning. Even though I’m there now, there was a time when I wasn’t.”
Or what if they do come around and ask if they can help, and you have no idea what to tell them?
Christal, a caregiver: “I could have been more intuitive, rather than just visiting. I could have figured out errands, etc. It didn’t occur to me the first, or even the second time around.”
But the main reason why I ended up keeping to myself was, quite frankly, so often I felt like the floor of a movie theater after a Shrek triple feature.
Emily: “I would have stayed more active because even though you feel like shit, it makes recovery easier.”
Destiny: “On sluggish days, I felt sorry for myself at times, and it manifested physically.”
Asia: “I wouldn’t have been so hard on myself for how my body changed. Being a teenage girl is already tough with body image, and I put unnecessary stress on me.”
And this highlights a very dirty secret about treatment: it reveals a whole host of problems that men usually don’t have to face. No, it’s not a contest as to who has it worse, but often, women simply have to deal with more shit.
Allison: “I would have frozen my eggs. I had to ask about it, and then I got sick the day before I was due to get them frozen. I wish I would have had more time.”
Jessica, Melissa, and Vanessa said the same thing.
Jennifer: “I would not have had reconstruction surgery. I had lots of complications. I almost died. Now have lymphedema.”
Melinda: “I had uterine cancer, and the doctor said, ‘Let’s just take out your ovaries, as well. You really don’t need them anymore.’ I simply agreed. I suffer from more needless side effects now.”
Seriously. A doctor said that.
Lori: “I would have fired my doctor much earlier than I did.”
Not the first time I’ve heard that.
Korinne: “I would have l left my husband a lot earlier then I did.”
Possibly the first time I’ve heard that.
Sophie: “I would have spent more time making my health and my journey more of a priority. I should have worked to find the best path on the journey. We all need to take care of ourselves better.”
Many of us, myself included, have fallen into that trap.
Christopher: “I worked a pretty demanding job. My commute was an hour-thirty each way. I wish I would have done more fun things and enjoyed my life more rather then putting myself through a marathon every week.”
Niki: “I would have gone out to eat while I had the chance. I’m still immunosuppressed. Dietary restrictions. And my taste buds changed. I now hate pizza.”
Now. Hate. Pizza.
Oh. My. God.
Peter: “I would have asked my family for help much earlier. I wasn’t able to take care of myself the way I needed to and I almost paid the ultimate price.”
I was one of the many who didn’t ask for help. It’s my disease. It’s my problem. I’ll get through it. Somehow.
Eden: “I would have accepted more help. I don’t do well on the receiving end.”
Brandie: “I’m a mom, and it’s my job to help. It was harder for me to ask.”
Even talking to a professional, albeit a stranger, would have probably made a big difference.
Betsy: “Psychologists asked if I wanted to talk to people. I wasn’t ready.”
Rico: “I didn’t know I needed it. Some bad circumstances sunk me into a deep depression. Now I know that a therapist could have helped.”
Sierra: “I would have shared that I got anxiety during treatment. I wasn’t always okay, even though I showed the world that I was always okay.”
Vera: “I would have gotten support for the mental effects of cancer. I didn’t really know they were there until they started popping up. They might have been less aggressive had I been more on the proactive side.”
And let’s be honest with ourselves: knowledge is power.
Sarah: “I wish I would have done more research to figure out what to do after treatment and what to look out for.”
Alyssa: “I would have tried to think about the financial side of things. I had no idea how expensive it would be. If I can’t work, how much money would I need to survive?”
Liz: “I would like to have known the difference with radiation or without, as I’m starting to have some side effects pop up.”
Emily: “I would have gotten a second opinion. I live in a rural area. I should have gone out of state, possibly, or found a different oncologist.”
Chad: “I didn’t feel empowered or even well informed to understand the implications of the decisions being made.”
Alison: “Now, I’m going to ask instead of leaving the room and feeling confused.”
Over the course of our speaking with so many brave men and women, they gave us some amazing things that they would have done differently.
Holly: “At one point, I quit chemo. I was so miserable. I wish I didn’t take a break. I would have been done with chemo sooner.”
At some point, almost everyone wants to quit chemo…even when it’s working really, really well. I would have quit half way through if I had my way. Thankfully, I didn’t have my way.
Julie: “I wish I had shown my appreciation to my doctors more. I felt down the road I should have sent them a gift basket.”
Never a bad idea. Avoid gifting nuts. Just in case.
Debbie, a Nurse: “For a young adult, don’t rely on the parents for everything. Make sure you are an active participant from the very beginning. So much control is being taken away; you need to make sure your voice is being heard.”
And the last word goes to Casey…
Casey: “I don’t believe in going backwards.”