Cancer Survivorship – The Fight After the Fight and All of its Firsts
After our fights with cancer are over, we all want so badly to believe that everything is behind us and that life is going to get back to normal. Those first weeks and months after our cancer fights are such a precious time. It’s our first taste of freedom after having been wrongfully held hostage by cancer for so long. I had my life back, but as time and the months went on I realized that it wasn’t my old life that I had back, but rather an entirely new one. Cancer survivorship brings with it an entirely new set of life circumstances and a whole lot of firsts, many of which I was completely unprepared to handle or to deal with at all.
For the first time in my life after my cancer fight, I was genuinely afraid. Gone was that false sense of security that we all tend to have about our lives and our health, especially as young and invincible adults, replaced with incredible feelings of insecurity. My cancer fight had stripped me bare of all of this false security, and I felt naked, afraid, and vulnerable. It’s not something you dwell on during the actual cancer fight because you’re so focused just trying to survive and get through each day. It tends to hit you later after your cancer fight, it never really goes away, and it’s terrifying that you never really feel safe like you always had before.
For the first time in my life, I also had to deal with some pretty serious secondary health issues. As a result of chemotherapy and a complication from a surgery, one of my kidneys nearly failed. On one hand I was happy just to be alive and took it in stride as the price of the cure, but on the other hand I was frustrated and disheartened, and in a lot of pain for quite a long time. The one and only body I’ll ever have had just taken the beating of its life at only 33, and I began to worry about what life might be like as I aged, and what my quality of life would be like if I faced another health crisis. I worried that my body wouldn’t be able to handle it, and this just added to the existing feelings of vulnerability and insecurity.
For the first time in my life, I learned what an emotional roller coaster was, in the form of cancer surveillance checkups. Suddenly we go from living a normal life and dreaming and working towards wherever we want to be in 5, 10, or 20 years, to just trying to get through our next set of scans a month or two down the road. The thorn in the side of every cancer survivor is that we never really know if we’re “cured” or not. The passage of time without any new evidence of disease is the only way we know, and it’s a terrible thing to have hanging over your head for so long, and it’s a huge shift in our mentalities especially as young adults.
For the first time in my life, I developed hormonal issues in the form of low testosterone. This resulted in spells of fatigue, depression, mood swings, and low or even zero libido among other things, which could last for as little as a few days or as much as a few weeks. We’re already dealing with insecurities and anxieties about this whole new world that we’ve been thrust into, only to have hormonal issues playing head games with us too! It just piles on, and it’s so cruel and unfair. It was totally not me and a truly awful feeling to be a moody, depressive, lethargic, and asexual lump. It was disconcerting to my wife as well, who had been used to always getting a certain amount of attention from her husband. When that attention suddenly trailed off, she felt self-conscious and wondered if I still loved her, or if I didn’t find her attractive anymore? It was nothing but the hormones talking, or rather not talking!
For the first time in my life, I had a body that would no longer do whatever I asked it to do, whenever I asked. I didn’t get my old body back, but rather a new post-cancer body that needed a whole lot more rest than it ever did, and that no longer had anywhere close to the stamina that it did before. My body had developed permanent symptoms of peripheral neuropathy as a result of my chemotherapy. To this day I cannot really feel my left foot, have limited feeling in my other foot and both hands, and have had to learn to deal with almost constant feelings of muscle fatigue and weakness to varying degrees. Imagine waking up each day and never feeling like you’ve got anything more than a half tank for the whole day, no matter how well rested you are. It was an entirely new body that I had, with an entirely new set of limitations that I had to learn to respect and stay within, or else suffer the consequences in the form of terrible and nearly disabling fatigue spells.
For the first time in my life, I truly felt loss. I had gained numerous cancer warrior brothers during my fight against testicular cancer, but not all of us were fortunate enough to win our battles. I mourned the loss of each of these friends as if they really were family and brothers. And when one friend passed who left behind his wife and four children, I learned what survivor’s guilt was all about. Why him and not me when I only have two children and he has four? I was so sad, devastated, and felt so guilty that I cried everyday for two weeks.
For the first time in my life, I began to very deeply resent the fact that my wife and I are basically “only” children, and became extremely jealous of the many people I knew who enjoyed close relationships with their siblings. It was the herding instinct coming to the surface, and the feeling of safety in numbers. I wanted to believe that if for whatever reason I wasn’t going to make it, that our brothers and sisters would be there for my wife and my children, and provide that peer level support and continuance to my family. Instead I felt nothing but a vacuum, which added yet more layers of insecurity on top of numerous other layers of insecurity.
For the first time in my life, I learned that a cancer recurrence scare can be even more terrifying than your initial cancer diagnosis, because all of your naivety and innocence about the brutality of fighting cancer is gone. When you experience a recurrence scare, you’re fully aware of the pure hell and world of terror that you could be in for all over again. You know that you’ve already exhausted the best treatment options and will be on to second and third best options, each with decreasing effectiveness and chances of a cure. When I’ve had recurrence scares, I’ve been so afraid that I’ve cried myself to sleep, only to have terrible nightmares and anxiety that just woke me up again. I was so convinced that my cancer had come back at one point that my death instincts kicked in again. It’s the feeling that this is it, and of needing to tie up loose ends and to say goodbye to people that you love and care about. It was enough to feel these terrible instincts once after my initial diagnosis, but deeply traumatizing to feel them for a second time after a recurrence scare over a year after my cancer fight had ended.
For the first time in my life, I experienced acute extreme anxiety so bad that I’d commonly find myself huddled up in a corner and in tears. I fell into a very deep depression and experienced post-traumatic stress. My terror from the past and worries about the future all combined into one terrifying present, to the point that my mind lost the ability to distinguish real from imagined. Everything and everyone around me felt like a threat that I needed to protect myself from, and my world became very small for a while. I was so spooked and afraid, so tired of my reality of living in constant fear of cancer, and was terrified of living in my own body from which I knew there was no escape. I had had it. I was so done with all of this and just wanted out, but knew that I had to press on. I had beaten the cancer that had taken me hostage, only to have my own mind and its out of control fears and emotions take me hostage during survivorship. I had to learn how to regain control of my mind, and how to master and control all of my fears and emotions, rather than allowing them to control me as they had been. I was ill and hurting so badly inside, but my family needed me. My wife needed her husband, and my children needed their daddy back.
And for the first time in my life, I finally realized just how different life really was after cancer, and how different my needs were as a person. It wasn’t just a new life or a new normal after all, but rather a whole new world that I was living in. The terrible anxiety, depression, and post-traumatic stress that I experienced for months, over a year into my cancer survivorship, were both the very worst things that happened to me, but also the very best. It was only then that I realized the need for a complete reset and reboot of my life, and only then that I allowed myself full license to do whatever I needed to do to help myself feel whole, writing people and things out of my life that had been hurting me or just weren’t what I needed, and bringing those that were closer.
We do go back to our established adult and young adult worlds after cancer, but we’re also born into this entirely new and terrifying world of cancer survivorship where we’re only just children, and that we’ve only just begun to live in. The way we suddenly lose so much support from all of our doctors and nurses and other medical professionals after we’re declared cancer free, simply because we don’t have any more appointments to go to, is not unlike abandoning a child in a way! We return to all of the pressures and challenges of our existing lives, but now with all of these new challenges of cancer survivorship, and without the experience and wisdom that age provides to always know how to overcome. We end up having so much growing up to do all over again, but without the benefit of a real childhood in which to learn and explore more freely.
I was declared all clear in July of 2011, but it took me until December of 2013, two and a half years later, to finally feel mature, confident, and secure in both of my worlds. For everything that I’ve faced during my cancer survivorship, there’s always been a way to improve, reduce, minimize, or overcome. There’s always been another approach to try, or a new philosophy or way to look at things, and today I enjoy excellent quality of life physically, mentally, and perhaps most importantly spiritually. I know my new body both inside and out, have full control of my mind and all of its emotions and fears, and have finally felt at peace with everything for the past year. This is never something that I or anyone could do alone. It requires a strong village of support for both cancer survivors and caregivers. There are plenty of times throughout all of this, long after my cancer fight had been over, where I’ve needed a lot of hand-holding, nurturing, and especially the guidance of other cancer survivors or caregivers who had already been there and done that, and could help me find my way. Be those people for us. Be the ones that reach out to both survivors and caregivers. Be that blessing to us and and check in on us and . We’re only just children again in these first few years as cancer survivors, trying to find our way in a whole new world, and still need every bit of your love and support.
Steve Pake is a six year survivor of Testicular Cancer. He resides in the Washington, D.C. area with his wife, and two young children. Steve has written extensively about the challenges of life after young adult cancer at his website, StevePake.com, is a Director at the non-profit Testicular Cancer Awareness Foundation based out of Grand Junction, CO, and is a Co-Founder of the Testicular Cancer Summit. Steve’s writing commonly appears at CURE Magazine, the I Had Cancer community, and at TheMighty