Cancer

7 Things I wish you knew about being a childhood cancer survivor

I’ve sat on this post all month and here, in the last few hours of the last day of Childhood Cancer Awareness month, I’m pulling the trigger and publishing it. I don’t normally have a problem talking about my experiences with pediatric cancer, but this post is from a more raw, rough, and real point of view as a childhood cancer survivor.

Before jumping into it, I want to preface that I am in NO WAY looking for pity or attention. This last year has been super transformative for me (in terms of coping and coming to an understanding and certain level of peace with my trauma and experiences.) I’m mentally and physically in the best place I’ve ever been in my 13 years of survivorship. However, it has taken me thirteen (THIRTEEN) years to get to this place and even though I’m in a good place, I still have a ways to go. That’s probably why I feel so strongly about sharing this post because it was bad enough to have done the whole cancer thing at 16 years old. I was told that I had to just get through chemo, just get through my surgery, and just “beat” cancer and then my nightmare would be over. No one told me about the fight that comes after chemo. No one told me that the nightmare doesn’t stop. No one told me, at 16, that my life would be forever changed. No one told me about how tricky and challenging life would be as a childhood cancer survivor, even as an adult.

So, here’s the truth about being a childhood cancer survivor. The things that they don’t talk about beyond the chemo and the surgeries. The life-altering changes that children will face if they are lucky enough to make it through treatment. The things we NEED to be aware of and fight for so that future children do not have to suffer what we have.

 

1. The mental care for childhood survivors is none-existent. I had an amazing psychologist the year I was sick and who met with me for the following year when I was in the clinic for check-ups, but after that, I had no one. I had no one to talk to about all the nightmares and fears and anxiety I was facing every day. So, I pushed it away, as best as I could. I wanted so badly to go back to my “normal” life and very rarely dealt with the complicated emotions that come with watching children die and dealing with chronic pain and severe reactions to chemo. It wasn’t until about 5 years later, a year into my college degree that I started dealing with intense panic and anxiety attacks and struggled with deep depression as feelings and memories started to resurface. And I had no. one. No one trained to talk about survivor’s guilt or depression or PTSD. It took me TWELVE YEARS to finally be brave enough to find a therapist myself and even then, it took me three tries before I found one who stuck. I have spent the last year not only working through the trauma I dealt with the year I was sick, but every other mental problem that stemmed from me suppressing it for years.
2. I may look perfectly healthy on the outside, but I will deal with health issues and complications from my treatment for the rest of my life. This isn’t a stubbed toe that will go back to normal after a few days. My treatment left me with a loss of hearing, thin heart walls and a high risk of heart disease, low platelet count (which means I have a harder time clotting and healing wounds) tendinitis and arthritis in my left ankle, knee, and hip, chronic back pain from a poor walking gait, chronic fatigue, soft teeth, infertility problems, a pattern of optical migraines and a risk of relapsing with Leukemia. On top of that, I am facing at least 2-3 more knee surgeries during the span of my life to keep my joint as usable as possible. While I’m so grateful my treatment worked, we need to be aware of the lasting implications that children are left with because there aren’t better treatments available
3. One a pain scale of 1-10, I live at a constant 4-5, with at least one or two days being at a 6 or 7. I don’t have any ways to manage my pain beyond temporary solutions like medication and steroid shots. I have had no help in finding other ways to remedy my pain beyond chiropractic care and I had to find that on my own.
4. NOT ALL DISABILITIES ARE VISIBLE! I have a valid handicap parking pass that was legally obtained through my doctor and state DMV and I still get ugly stares and people accusing me of illegally using my pass all. the. time. Many children will have lasting health problems and complications for the rest of their lives and people won’t believe them because they “look” healthy. Childhood cancer survivors deal with invisible illnesses and disabilities every day and they have to fight for others to take them seriously.
5. I am always an open book about my treatment, but I’m also super worried that other people will think I’m looking for attention because I was bullied in high school for being a survivor. Kids would whisper behind my back and say that I was faking my limp for attention, they would tell others that I would pretend I was still sick so that I could get out of homework, and they would give me the silent treatment if I talked too much about cancer. It made the fact that I was “that girl with cancer” even more alienating and also forced me to use my leg before it was healed enough, resulting in more complications and additional surgery. It also made talking about cancer really hard for the first year or so of college and made my depression and anxiety worse because I was afraid of people “finding out” about my cancer and not wanting to be my friend anymore.
6. The scale of what I can and cannot do changes every day. Some days, my pain is low and my energy is high and I’m able to go rock climbing or out in the Jeep or even get a good elliptical sweat-sesh in. Other days, my pain is high and I am so fatigued that I can barely get out of bed. It varies every day and every day, I have a new battle to fight. I will fight these battles for the rest of my life.
7. It is possible to live a vibrant and beautiful second-chance life as a childhood cancer survivor. But it’s not always easy and it’s taken me a long time to get to a space where it felt possible. Like I said above, I’m in a good place. But I think I would have been in an even better place if I had help earlier on, access to continued treatment from medical professionals, and a better understanding of what it’s like to be a survivor from the people around me.

It’s the last of day of September and tomorrow, everything will turn pink for Breast Cancer Awareness month. And yes, while that’s just as important to talk about, I hope that we don’t forget about all the children fighting for their lives and all the children dying because only 4% of all cancer funds are allocated to pediatric cancer research. Please don’t forget about us. And please don’t forget about the survivors. We need you to join us and continue to raise awareness and fight for the children who all deserve beautiful, vibrant second-chance lives.