All we need is (mostly) you.

What cancer fighters want you to know.

At some point in time, usually 4 months after a cancer diagnosis is shared, the social support texts, calls, cards, etc. slow down. Its natural, well-documented and blameless. It’s how humans human; immediacy is simply not sustainable and we adapt and move on. Yet for the person engaged with the treatment path, especially like me treatment that will never end, the daily reality does not cease. Cancer is boring while overwhelming, lonely despite friends and family, surreal in the attempt to live large while also preparing to die.

What does a late stage lung cancer fighter need? The real answer is for this sucker to be cured, dammit. What I certainly don’t need is to live long enough to witness a humaned rocket land on Mars, or for AI to display and narrate all the wonders of the Earth in surround vision from the comfort of my death bed, or to read yet another inane story of some billionaire’s excess. No, those things are enraging, especially as cancer research is struggling in this country, amongst numerous atrocities.

One helpful thing for lung cancer fighters is for folks to understand that no cancer is “deserved”. I didn’t understand this at first with my lung cancer as the thought never crossed my mind. My father died in 2009 at the young age of 73 from lung cancer. Yes, he was a life-long smoker. We never spoke about that post diagnosis. Why would we? Did he get cancer because of his smoking? In his case, yes. Did this make it “deserved”. Hell no. And hell no for all the others like him. Its infuriating that lung cancer carries this stigma when no other cancer does. Even worse is it suffers from reduced research funding due to poor marketing. Think breast cancer - everyone likes boobs, and it shows up with money.

I’m a never-smoker. The 20 years I lived in a smoke-filled house put me off it from the get go. I loathe the stench with all the passion you’d imagine from a CPTSD survivor. I’ve a crapton of childhood trauma that’s become forever associated with Lucky Strikes and Newport Lights. I tend toward visceral, scowly reactions to anyone lighting up around me. Admittedly, after a drink I was, on occasion, quite rude about it. Maybe even without a drink. I simply hate smoking.

Imagine the sheer irony I experienced getting utterly slammed with a Stage IV incurable lung cancer diagnosis just after my 64^th birthday when I was feeling incredibly healthy, top of my game level, let’s go enjoy early retirement damn good. Did I deserve it for being rude to smokers? Only Universe knows and that wench reveals nothing. But I refuse to think in terms of guilt. Childhood provided enough of that too.

Moving on. Another helpful thing is for friends and family stop fearing saying the wrong thing. (Other than “You deserve this”. Let’s all agree that is a no-go.) Please understand there is no right thing to say, although there are several “colorful” things that are quite acceptable to blurt out with abandon. Just don’t go silent if you really do care about us. Cancer Ghosting is sadly a thing and it hurts like a hangnail in your soul. I’ve had that experience, even with someone once a friend for 25+ years. That has happily been balanced - broke the scale entirely - by the legion who have reached out across decades and miles.

Meal trains, cards, gift certificates and trinket gifts are all lovely. But at some point the cancer fighter starts to cope better and may find cooking meals to be therapeutic and eating out/take out not the healthy strategy they’ve decided on. Or they now have a to-do list of possession purging to do (its a thing) so all the new little gifties become part of that. It hurts to recycle those beautiful cards we receive but again with the purging. And really, you’ve no idea how many of those softie (plastic based) socks end up at Goodwill or other donation centers. Donate socks in our name instead. Donate to anything in our name and we’ll feel supported.

So then what else is there to do? We fighters know we are no longer who we were; less spontaneous, less energetic, perhaps a bit less fun overall, eating and drinking aren’t big activities anymore. Trust me, we mourn “before us” too. Every damn day. We try to rally and want to be ourselves but treatment can suck the life right out of us. It is well-designed to do just that. But please don’t give up on us. We need you and your vacation and dating stories and work and family issues and daily real-world normalcy. Please yes, absolutely talk about yourselves, share like you always have. Our ears still work and we want to be seen as more than our cancer and crave anything that cancer is not.

There will be good days, just not always a date we can point to. Penciling in will be the norm and that needs to be ok. Cancer is unbelievably isolating so your text/picture check ins are a bright spot of connection. Invitations tend to stop coming, but again there are good days, trust us. Can we have carte blanche to cancel as necessary? Go out for cocktails, but ours might be a mocktail. Plan the dinner party but with the thought you may have leftovers. Hikes and runs and camping can be planned but with others along just in case we aren’t. On days when treatment is kicking our ass, simply sit with us in the weird, sad silence, a hot cuppa in hand and maybe one of those decadent dark chocolate, cardamon, brown butter cookies with flaked sea salt on top.

One of the hardest realities is that life will move on without us. We watch it happen like some wrenching slow motion reel. Is it a slow enough vehicle we can catch up and ride along for a bit? We will give it the Herculean try. Maybe reach out a hand to help us up. Part of our fight is devoted to surviving the adverse effects of our treatments which are designed to kill. Another part of our fight is striving to live intentionally within the time we have left, whatever that is. We believe our time with loved ones is worth this utterly impossible effort.