We all have ghosts that haunt our lives. It might be past regrets, decisions you never wanted to make, friends and family lost, missed opportunities, the road not taken, or just mourning for things that might never have been. Cancer brings a whole host of spectres right into your everyday life, and every day you feel haunted by the past, present, future, and most upsetting, yourself.

Ghosts of the Disease

Even more than 18 months after my lobectomy and more than a year after finishing my very brutal chemotherapy regimen, the lung cancer isn’t gone. It may not be showing up on blood tests every three months or scans every six months, thus far at least, but it’s still very much there.

It’s there in the scars that now track up my left side.
It’s there in the nerve damage on my left ribcage.
It’s there in the breathlessness when I try to be active.
It’s there in the pill caddy I still fill every week with meds.
It’s there in the side effects I feel every single day.
It’s there in the constant schedule of appointments.

I want it to go away, desperately, but it’s there. Even to this day, when I think “I have lung cancer” those simple words are a jolt to my mind, no matter how many times I’ve said, thought, or written them. It’s there, and I’ve never known why or how. And I never will.

Ghosts of Life

I miss the life I used to have, before lung cancer took over. Before I even had a pill caddy, before I understood a whole new vocabulary, before my body betrayed me, before I betrayed myself.

The plans we had, the hopes for what we wanted to accomplish, the dreams of the future, all of that took a back seat to scans, surgeries, treatments. None of that life has come fully back yet, and I have no idea if it ever will. Each day is different, and it’s true that some are closer to a pre-cancer normal, but on no one day, not a single one, can I ever forget, can I ever feel like I was before.

Volunteering, travel, hobbies, birding, work – all of it has taken a backseat when more tests, drugs, and treatments need to be prioritized. Yes, we are still able to do some of it, but no, it’s not the same and may never be again.

Relationships have also become ghosts. The friends and connections I used to have are no longer the same, and in many cases, have vanished completely. Everyone has their own lives to move on with, I understand that completely and there is no blame. No one is at fault for the cancer vortex I now live inside, and I don’t fault anyone for not wanting to be part of this swirling maelstrom. I never wanted to be part of it myself.

Some people do remain and I’m so grateful for their support, whether in a Facebook message, a small note or card, a thinking-of-you from my Cancer Treatment Recovery registry, even a quick check-in to see how I’m doing these days. Others I had hoped might stick around but didn’t, for their own reasons, and life moves on for everyone.

I have learned that this type of ghosting is normal, that many other cancer patients see friends, family members, neighbors, acquaintances, and coworkers drift away after the immediate trauma of a diagnosis and drift even further once treatement ends. They don’t know how to handle it (neither do I, but I have to), and they don’t know how or want to be a part of it. Aren’t I cured? Isn’t it over? It never will be. If you know, you know, and if you’ve never been there yourself, you’ll never understand. No fault and no blame, you just don’t. And I get that too.

Ghosts of Myself

Life has moved on for me, but I am a ghost myself and it breaks my heart and my spirit a little more each day. I used to have more energy, more enthusiasm, more caring and now… The spirit is empty. I’m a ghost of who I once was, hardly able to do the bare minimum (or not even) some days. True, other days are better and I manage, but I get so very angry when after just ONE good day, my energy is drained and I’m back to a ghost again.

I get sick easier now, and exhausted when I didn’t do anything I haven’t done a hundred times before. I look at my to-do lists, my work schedule, my craft cabinet, the dust on my binoculars – all the ghosts around me – and it all feels just… Separate. Different. Lost. Impossible.

Where is the woman I used to be? I don’t see her any longer. I hope she’s just resting, recovering, strengthening, and that she will return. I miss her. For now, I have this other woman in my soul, this cancer patient with soreness and weakness and side effects, and I don’t like her very much. I don’t like myself very much. That’s an attitude I want to change, but right now, it’s lonely and harsh and so very true.

Haunting the Future

The most concerning ghost of all is not knowing what the future may bring, whether the cancer is just lingering until it might arise again. Every three months I get bloodwork to check for shed cancer cells, and every six months I get CT scans to look at what lungs I have left and be sure there are no changes or causes for concern. Thus far, I’ve been fortunate.

The fear, however, remains. Every single time, without fail, I go back to how I felt perfectly fine while a 4.5 centimeter tumor was raging in my left lung. The biggest ghost of all was right there inside my chest, crowding out the future I would have to leave behind, and I never even knew it.

As each new test and scan approaches, the anxiety climbs higher than before. I cannot sleep, cannot focus, cannot live until those results are clear again. Every few months, life is violently interrupted as cancer haunts my future. I get poked by needles, scanned by machines, prodded by tests – then I wait. Sometimes the results take just a couple days, more often it’s as much as two weeks of anxiety and ennervation before I know whether I’m clear (or not) until the next round of tests in this never-ending cycle.

And I already know it will never end. Even if there is never another positive result, never another blip on a scan with those words “suspicious for malignancy” the ghosts will always be a part of my life. I know I have to learn to live with them, but right now, there’s no life, there’s just existence.

Yes, I’m existing. Yes, I dream of a life again. Right now, I just don’t know when I won’t be dancing with ghosts to the sepulchrul music that haunts my mind.