Cancer Survivors Are Grieving Too

My good friend, Hanssie, writes about the very painful divorce that she went through on her website. I've always enjoyed reading her thoughts, as she writes about her divorce in almost the same exact ways that I've written about my cancer experience. It's comforting in a way to know just how similarly we can experience and process traumatic events in our lives. I've really found myself in some of my friend's writing despite such different situations, and being at opposite ends of the country from one another, and never having actually met in person yet at that point, and being different genders. What does that tell you? It doesn't really matter what traumatic life experiences we've had, as we're all human inside, process things in all of the same very human ways, and that we're never alone. To struggle is human.

One day I was reading my friend's website, and my jaw hit the floor when I read a post about grief. It was the first time I'd ever seen a "grief chart." I had no idea there even was such a thing, but I could easily identify myself at every single step of this big curve as a cancer survivor. I had been writing and sharing in my cancer journey for a few years at this point, and it had never occurred to me even once that this entire process and all that I was going through, was all really one massive grief curve.

Mind blown.

It's pretty obvious and intuitive that when you experience something such as a divorce, that you're grieving the loss of your marriage, and someone you had loved. Similarly, if you've lost someone that you love to cancer, or a disease or some tragedy, no one needs question if a grieving process is taking place or not. Duh. When it comes to cancer survivors though, it's completely counterintuitive, and nobody really seems to understand, that cancer survivors are grieving too.

Everybody seems to think that cancer survivors are just supposed to be happy. Our doctors are ecstatic when they can actually cure someone, because plenty of cancers aren't curable. They think we're just supposed to go on with our lives and be over the moon, because we beat cancer. Our families and friends tend to think the same. Yes, they'd been through a little something, but emerged victorious and ought to be feeling like a million bucks. I'm telling you, it ain't like that. So what are we grieving?

Cancer Survivors Are Grieving The Loss of Their Lives As They Once Knew It

Nobody gets married thinking they're going to get divorced, and so a divorcee is grieving the loss of their marriage, the loss of someone they had loved, and are now facing the entirely new challenges of single life, and single parenting or co-parenting, all of which had been previously unimaginable. I know a few mothers, fathers, and wives who have lost someone that they've loved to cancer, and are now facing the challenges of a life that they couldn't possibly have imagined either, while missing their loved one every single day. All of these are naturally understood, but cancer survivors are grieving in much the same way. We too are grieving a "loss" - a loss of our lives as we once knew them - and are facing new lives as cancer survivors that we couldn't possibly have imagined, either. 

Related: Cancer Survivorship - The Fight After the Fight and All of its Firsts

We were invincible and nothing could possibly happen to us, until something did, and now we know just how vulnerable we all are. We were in the best shape of our lives, and then cancer beat us down to nothing, and we have to start all over again. We thought we had control over everything, only to realize we don't, and now we feel so powerless. We were worry free, but now every cough brings the worry that our cancer has returned, and that there won't be a cure the next time. We're overwhelmed and afraid. It's all too much to handle, and we fall into depressions for weeks or even months at a time, when previously we had always been upbeat about everything. We find ourselves sitting in a corner one day, in tears and scared out of our minds, because our eleventieth follow-up scan is the next day, and we're petrified that "this is the one" where they're going to find something. We worry that our cancers have returned, that we've just lived our last good day (again), and that we're not going to be so "lucky" this time. We feel so alone as all of our friends are continuing on with their lives like business as usual, while we're perpetually fearing death and stuck dealing with all of this crap.

This is not the life we had expected for ourselves, facing cancer and all of this misery - and much like the divorcee, we couldn't possibly have imagined the lives we're having to live now if we had tried. The divorcee, the widower or someone that's lost someone, and the cancer survivor, all have something in common - the loss of their lives as they once knew it, and the completely unforeseen challenges of an entirely new life that they couldn't possibly have foreseen nor imagined. We all grieve. It's all the same process of loss and loss adjustment, just about different things.

How Do Cancer Survivors Grieve?

Going Down

I know some people in their 60's who have recently been diagnosed with various cancers, and many of them are in shock and disbelief, thinking they're too young for this. How do you think I felt at 33? That's right, nobody ever thinks they're going to get cancer, even those right at the median age for the diagnosis of many cancers. When I was diagnosed with cancer, I felt everything on the left half of that grief curve all at once. I was in shock, I was in denial, I was angry, and I cried for days. I was terrified out of my mind and thought for sure that I was going to die, and was in complete disbelief about everything. How could this be happening to me? I'm only 33! What about my children? We had just brought them into the world, and here I was on my way out already? Searchings, Disorganization, and Panic. I had just been laid off from my previous job in the months before I was diagnosed with cancer, so I can tell you a few things about loneliness and isolation, too. That was like being kicked when you were down.

Everybody is a little different, but during my cancer fight I went entirely numb. I shut down emotionally and just put a brave face on for my family and my children. If daddy looked like he was going to kick this cancer's ass, my family wouldn't worry as much. I didn't want them to. My children were so young and didn't know anything about cancer, but they understood that daddy's back went out once in awhile. We just told them that daddy had spiders and ladybugs in his back, and had to get some really nasty medicine for a few months to kill them all, and then I'd feel better. We eventually told them that I had cancer, and that I write this website to help other people find their way through this really rotten grief curve that nobody seems to think cancer survivors should be experiencing. Maybe they will after this.

The actual grieving process can easily look much more like the one on the right than the left. This is not necessarily a linear process at all, but you get the idea.

Rock Bottom

After cancer, I was back to life, got a new job and was back to work, back to kicking ass again, and I was energized and motivated. I loved my new job, loved my new colleagues, and loved having money in the bank again. Know what was awesome? Just having money to go out to lunch with friends, which was a helluva lot better than sweating every penny because I was out of work for six months due to a layoff and fighting cancer at the same time. We're one of the few people that actually kept a six month buffer of living expenses in the bank, because I had been worried about losing my previous job. That did happen, but who would have ever thought we'd need every bit of that to fight cancer, too.

For my first year and a half after cancer, I thought I was doing great, but still didn't have even the slightest clue what had hit me, nor what I had been through, but it all started catching up to me. Monthly scans were starting to get the better of me, and when my body acted up I worried, but nothing makes cancer more real than when friends you had made started dying of theirs. It's almost like my subconscious mind really did want to believe that my cancer was just a really rotten case of the flu, but watching friends die suddenly made it all real. This is cancer, not the flu. People die of this, and families are torn apart by this, and watching this happen to people I cared about is when the emotional floodgates finally opened on me.

I nearly lost my mind. In fact, I did lose my mind for awhile. I always had this rock solid confidence about me, but now I didn't know up from down, and spent every waking moment of 2013, two years after my cancer diagnosis, trying to stay one step ahead of PTSD. I fell into a terrible depression, I withdrew from friends, and I withdrew from my colleagues, and to this day have never really re-engaged fully. I know why, but that's a story for another day, having to do with complex trauma issues. About the only people I could be around at all were my wife and my two children, and my world became very small for a while. I thought I had everything figured out, but here I was adrift like a kite in a thunderstorm, two years after my cancer fight.

"Re-Entry Troubles" to the max.

Finding My Way Up

Related: Steve Pake's Top 10 Guide To Surviving a Young Adult Cancer

It took me a year, but eventually I figured life out and wrote the above essay, not for others but for myself. When one finally emerges from a long struggle, there's this moment of clarity where you have an intimate understanding of all that went right and why, and all that went wrong and why, and how you got through it all. This is the very first essay about cancer that I ever wrote, and I wrote it for myself because I wanted to remember, and because I never wanted to hurt like this again in my life. God forbid if that day ever came, I wanted to be able to read my own writing, so that I'd know what to do if I had forgotten. I just couldn't hurt like that again. Ever.

This essay to this day has been shared and read thousands of times on social media, and within hours of its publishing I had a few offers to join various cancer non-profit organizations. From that point forward, it just became a mission for me in my life to do everything in my power to help others through not just their cancer fights, but these challenging survivorship years after. I joined the Testicular Cancer Awareness Foundation and started blogging for them, because it just felt like the right place for me to be, and I got all of the right vibes and energy from the family that founded it. I made a lot of new friends in the non-profit arena, and there's so many similar people on similar missions that just like me, have grieved loss in their lives, and wanted to do good for others.

New relationships and new strengths, and all of the right people that I needed in my life.

I wasn't out of the woods yet, but I finally knew how to take care of myself, and how I needed to live my life after cancer. I enjoyed the hell out of every day the best way I knew how, I ran like the wind because it gave all of the anxiety I had freewheeling inside of me a healthy way to exit, and I bled into my keyboard to give all of that dark energy inside of me a healthy way out, too.

New patterns and hope.

My wife would often see me at my computer in tears, and asked me why I wrote if it hurt so much. The answer was not that I was hurting because I writing, but rather that I was writing because I was hurting inside, and my writing gave that pain a healthy way out of me, just as my running gave my anxiety issues a healthy way out of me as well. The PTSD that I experienced two years after my cancer diagnosis came far closer to killing me than the actual cancer ever did. That was so painful to experience that it took me another three years to even start opening up about it, but I felt so much better after I did. My writing has helped me release so much pain, and it's helped so many others find their way through their own.

The Top of The Curve

You know that you've done something really amazing and worthwhile when you have someone tell you that your writing has saved their lives, because they were so lost and afraid after cancer that they were ready to end it all, just like I was. They had found my writing and another person suffering like they were, and just knowing that they weren't alone, weren't truly crazy, and that other people deal with this shit too, was enough to keep them going. That's just amazing.

What if I told you that I've been told such things more than a few times now?

Mind blown.

I'll tell you that recently becoming a Director at the Testicular Cancer Awareness Foundation, and having launched an entirely new from the ground up TCAF Ambassadors program that I've created and am really proud of is all fine and good. Having won an award for my writing, and being able to say that I'm an award-winning cancer blogger is a pretty cool thing to be able to say too, but all of this pales in comparison to those moments like the above. When someone reaches out to me to let me know just what a difference I've made, and that they might not be here today if it wasn't for what I've been working so hard at over the years, that's what matters, that's what counts, and that's why I do what I do, bleeding all over my keyboard for the past few years.

I still have some days here and there when I feel like something's once again gone or going terribly wrong in my body, and knowing that I've done some good in the world with my time here helps me to still feel at peace.

Affirmation, Helping Others, and Full Loss Adjustment.

I'm finally there. It only took me the better part of five years, and I've never had to work harder nor for longer at anything than I have at this, but I'm there.  

I look back on this long grieving process of cancer survivorship, and tear up at some of these dark times I've experienced. It's not right, and it's not fair, but that's just how life is sometimes. No matter where you are on this grief curve after cancer, I'm here to tell you that you're going to make it, even if your body isn't. Our bodies are fallible, but souls are immortal. I'm all-in on believing that even if you don't, because it's the only way I could stop being afraid of cancer, and I refused to live my life in fear anymore. Otherwise, I wouldn't have gotten to where I am today. I'd be perpetually stuck somewhere back on that grief curve around re-entry troubles and depression, and I just refused to accept that that's how things were going to be. No f****** way! 

You just head straight past Go, and onto New Relationships, New Strengths, and New Patterns (including thinking patterns and beliefs!), because that's the only way you're going to get past where you are. You have to evolve. My motto is this. So long as you're not hurting yourself or anybody else, it's all fair game. 

Now tell me again that we're just supposed to be happy after cancer. The next time you run into someone who thinks this, send them my way. I don't think my friend is fully over her divorce yet, just as I don't believe that deep inside I'm fully over having had cancer yet, either. I don't think my friends that have lost husbands or sons to cancer will ever fully be "over it" either, but we grieve and we evolve slowly but surely, and maybe one day, we can eventually reach that plateau of full acceptance and loss adjustment.

Related post: Longing To Feel What I Know I'll Never Feel Again After Cancer

There's still some days like the above when I once again find myself grieving about all of this, but I accept it now. Cancer survivors are hurting inside, just like a divorcee hurts, or someone that has lost someone hurts. We hurt about very different things, but it's all the same human process inside. There's nothing wrong with you. Cancer survivors are grieving too.