When I was diagnosed with breast cancer almost ten years ago, the ONLY thing I thought about was living until I was 40. That gave me a solid 8 years of life to live. If only I could get to that point. I never understood why people dreaded getting “over-the-hill.” I couldn’t wait to see what the top even looked like.
Long-term survivorship feels like living on an island somewhere between where the oceans of fear and gratefulness collide.
I stood on top of that hill almost 2 years ago, and it was one of the best moments of my life. At that point, I had lived as a cancer survivor for 8 years.
This year, I get to start seeing what the 10th year of cancer survivorship looks like. I think I have a pretty good idea of what to expect. I can summarize it by saying it will feel like what the last 9 years of cancer survivorship felt like: living on an island somewhere between where the oceans of fear and gratefulness collide. I am still, yes still fearful the cancer will come back, yet I am grateful every day that I still get to live. It’s exhausting.
Nobody Talks About Life Way After Cancer
I thought living this long after cancer would be easy. All I heard was that the further out from diagnosis, the easier the cancer fears were to deal with. I’m no expert, but I have experienced heartache, pain, suffering, etc. long before cancer. Cancer, however, played on a whole different playing field for me. I kept hearing the old saying “time heals all wounds.” And then I would think of my cancer diagnosis, and the words would change for me: time makes dealing with cancer worse. Oh, wonderful. Why is long-term cancer survivorship so difficult? And how come nobody wants to talk about it?
Well, I am here to talk about it. Let’s get it out in the open. I don’t have to rip the bandage off or reopen old wounds. The good news for me is the bandage never got stuck and the wounds never healed.
The Grateful Part
Let’s start with the grateful part of the journey. I am happy that I have lived this long after cancer. I am looking at 10 years of survivorship. I know I am lucky that I am still living. I think about that every day! I know many people diagnosed with cancer are not as fortunate. I have witnessed that first-hand as I know many others have as well. Then, see what happens? I jump right into survivor’s guilt. Why do I get to live?
And the downward slide of long-term survivorship begins.
Now, for the physical aspects of cancer and breast cancer treatment. I have also healed quite nicely. I have to say I am not in terrible amounts of pain, I have full mobility of my arms, I work out frequently, I am honestly not that tired and I have learned to live in the post-menopausal world even before the age of 40. That’s the good part.
Okay, wait for it, here’s the downward spiral of long term survivorship coming at me again – mentally and emotionally I live in an absolute nightmare.
Cancer’s Hidden Damage
10 years after diagnosis I don’t look like a cancer patient. I could write a novel about this. If you ever dealt with cancer, you know how annoying this can be. “But you don’t look sick” has been uttered so many times I refuse to speak any further about this. That’s the physical part. The mental version of that sentence spoken to me a hundred times goes like this: “but you act fine every day and you sound great, and you look happy, and seem just fine.” That is spoken to me every time I talk about how, after 10 years, cancer still terrifies me more than ANYTHING.
People just don’t get it because they think I am cured and I should be right back into my normal swing of things like nothing ever happened. Newsflash: It’s still a nightmare! Cancer doesn’t just “go away” with long term survivorship. I feel like those of us in this group are the lost souls of the cancer world.
Why is that? Well, we have out-lived the 5-year mark that everyone hangs their breast cancer statistics hats on, and that seems to be the only thing non-cancer civilians seem to understand. “Well, you have to make it to 5 years, right?” Yup, and then what? Hear the crickets? No one has a clue after that.
All Cured and Nowhere to Go
If you are like me, you may have been on hormone therapy. In many cases, you can be done taking it after 5 years. I finished after a little over 6 years and guess what? My oncologist said he didn’t need to see me anymore.
Then I said:
“Um, so, I should still see someone about my cancer, right? I should be checked for cancer? Be a regular at a cancer center? Somebody in the cancer world should still check me right? I’ve had cancer for crying out loud!!”
I was in a full-on panic when he said his services were no longer needed as long as I saw a primary care physician annually. I lost my mind. Now, I reassure you, he said I could still see him but it wasn’t necessary.
This island I was standing on was becoming more and more isolated with every year I lived past that 5-year mark.
Along Comes Trauma
Then there is the cancer PTSD I was diagnosed with. I can’t remember most of year two after diagnosis. I remember my one-year cancerversary and then there is just darkness. NO ONE understands this – not my friends, not my family.
I talk to a therapist but that’s about it because I have no one who can relate. They think I am cured. I am so far from it. I have flashbacks to my diagnosis, I have nightmares about my cancer coming back, I live in constant fear of the cancer enjoying itself all over my body and me having no clue until it is too late. Other people’s breast cancer stories often send me into a tailspin in which I can’t distinguish time from where I am today from 10 years ago feeling like it is happening all over again.
I can go on and on. If you are a long-term survivor you may not have any of these issues, and I truly hope that is the case for you. Or, you might be a long-term survivor saying YES that is me!! Or you might be someone counting down the days until your 5-year mark. Here’s what I will tell you. Each of us has a different story, different diagnosis and different journey. There is nothing wrong with any which way we go.
Directing the Sail in High Winds
As I move through long-term survivorship and look up and out into the horizon, I see that I am indeed on an island, but to my surprise and relief, I have found that there are lots of islands all around me and many others are just an arm’s reach away. There is no reason to fight the fears alone and feel like you’re the lone survivor in this big ocean of long-term survivorship.
Dana was diagnosed with stage 1 ER + breast cancer in 2010 at the age of 32 years old. She volunteers with Young Survival Coalition as an Illinois State Leader and RISE Advocate. After diagnosis and treatment, survivorship was the toughest challenge in her cancer journey. A focus on life after cancer helped her to co-found The Dragonfly Angel Society – Cancer Survivorship, which is a non-profit that helps cancer survivors find survivorship resources that suit them and get on with the “now what” of their life after cancer.