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The Many Unseen Challenges of Survivorship

by Lenae WaltersSurvivor, Primary Mediastinal Large B Cell LymphomaFebruary 28, 2024View more posts from Lenae Walters

I don’t think any AYA would agree with the definition of survivorship, at least in the traditional sense. Through media and life in general, the AYA community is largely forgotten. I think the traditional definition of survivorship only applies to much older generations who have outrageous amounts of money in their retirement accounts. The same group of people who, while they may be forced to take an early retirement, also get to spend their time hanging out with their children and grandchildren. People in the AYA group aren’t so “lucky.”

Survivorship for me has meant several things in the last two and a half years since I’ve been NED. It has meant following my gut, literally and figuratively. Eating healthier foods, listening to my body when I need to rest, spending time with people who make my internal nervous system calm, and critically thinking about the future I want (instead of what society tells me I should want) are key factors in survivorship for me. Survivorship means booking the trip, even if it’s not always financially feasible. Life keeps moving on and I’ll (hopefully) be here to accrue that money. Because what I have learned is, the people who are asking me to take these trips may not be here next week, month, or year. These connections, these people I love are wanting to spend time with ME while we’re all still here on this earth to spend time together. That means more to me than anything else.

Survivorship means forgiving people outside of my cancer community who don’t have the mental bandwidth to understand my day-to-day life. Survivorship means not getting wrapped up in situations where it feels like others may not have my best interest at heart. Survivorship means listening to my heart first and the rest of the world second. Cancer taught me that. Cancer taught me that if I can find a quiet space inside my head and block out all the distractions we have around us constantly, I can figure out what’s meant for me and what isn’t, and not be affected by what’s not truly meant for me.

Survivorship has genuinely taught me to be kinder to myself and those around me; to recognize that when I make mistakes, or when someone I love makes a mistake, to try to understand their decisions instead of automatically getting frustrated. Because your loved ones will frustrate you during survivorship. They’ll believe you’ll be “back to your old self in no time” and that this catastrophic event you went through won’t change you from the inside out. They’ll remind you that you’re “strong, resilient, and an inspiration” on the days it feels like brushing your teeth is your biggest accomplishment.

Survivorship for an AYA is watching others in your age group get married, have children, and post about their newest job advancement while you’re considering whether your old job fits the new you. There are so many different sides of you after your cancer diagnosis and treatment. While you’re continuously figuring out how your new body/brain works, you’re constantly reminded of all the things you “should” be doing, by society’s standards. Survivorship is group therapy, one-on-one therapy, continuously confiding in cancer friends to see if your new normal is anywhere near close to theirs. Survivorship is finding your new community who “gets it;” the good, the bad, the (usually) ugly parts of being a young cancer survivor. Finding people who are not afraid to talk about the hard parts of cancer, whether they’re cancer survivors or not.

Survivorship means having to be resilient every single time you go back to your cancer hospital for a “routine” checkup. Most get to go see their oncology team every three months after they’re done with treatment. That means every cancer survivor has the opportunity to walk into the building they worked so hard to forget in the last three months since their last visit. Survivorship means having more hope than you could have ever imagined possible, whether that’s hope for a cancer-free future, or hope that your scans are stable from the last time you went. Hope, strength, and determination are all synonyms for survivorship.

For me, survivorship has meant a lot about forgiveness. I can only speak for myself on this, but with my aggressive non-Hodgkin’s lymphoma, a lot of turmoil was brought up with my aggressive chemo regimen. I heard from others during support group that the type of chemo we were put through really dredges up past issues. I’ve had the opportunity to do a lot of self-work on myself to work through unresolved past traumas. I’ve chosen to try to understand people who have hurt me and forgive them because at the end of the day, the only person who stays up at night thinking of those transgressions… is me. I’ve chosen to forgive people who will never say sorry. If we, as a community, can be more accepting of others in every aspect and try to understand why people do the things they do, communicate effectively, and work through our own emotional responses, then the world would be a much happier and more effective place to live.

I wish more people outside of the cancer community understood how many aspects of life a cancer diagnosis actually touches. Cancer affected my body, my brain, my job, my future financial opportunities, my overall health, my family, my pets, the majority of my relationships… the list could go on and on. I wish there was more literature and more research on AYA cancer patients and survivors so the rest of the world could be gentler to this group when they’re done with treatment and “moving on with the rest of their lives.” More compassion and more grace to quietly figure out what life looks like. More acceptance and love that though they may not be the same person after treatment, they deserve kindness and compassion as they’re moving through life.

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