November is Lung Cancer Awareness Month. I have said before that I don’t do months. Lung cancer is weeks, days, minutes, seconds for me. Year round.
In November many of my fellow advocates devote a lot of time to raising awareness–the squishiest form of advocacy. This year I am seeing a lot of upbeat photos of people who don’t look for a minute as if they are living with a disease like lung cancer.
Passing for healthy has been one of my favorite party tricks. At the moment, there’s not a chance in hell I could pull it off.
So here’s the thing. I believe in positivity while also keeping it real. Really real. And the truth is, those pretty pictures are each of us at our best moment.
I don’t believe people care more about something like lung cancer when the message is that people are living. Yes–it is inspirational for our community. But the rest of the world needs to hear the other side. That even though anybody can get lung cancer, very few will survive it.
My friend Andy Lindsay died two weeks ago, almost two years to the day after he was literally at the top of the world. If lung cancer can kill Andy Lindsay, it can kill anybody.
You are aware of my current situation. Having exhausted all TKI’s for those of us who are ALK+, I am back to non-targeted treatments–infinitely less effective and with a greater range of side effects. My friend Diane Legg, diagnosed with lung cancer months before I was, found out two weeks ago that she’s got three brain mets–after sixteen years of her cancer staying confined to her lungs.
Diane and I remain exceptions–having lived far longer than anyone thought possible. But I’d be lying if I said it was getting any easier. Not only is cancer and continuous treatment beating the shit out of us, we each have become close to hundreds of people who have passed away. Wrap your head around that one.
So yes. Let’s stay positive and hopeful. But let’s also get it right–both out of respect for those who have died but also for the sake of those who are still living. We need more money for research and we need it yesterday. Because having an opportunity to get older if you are going to age out of treatment options is one hell of a bitter pill to swallow.
Linnea- I read all your posts and appreciate your ability to get down and gritty about this disease. I’ve been on Tagrisso for 9 months with an EGFR mutation. I’ve basically been diagnosed and living with this disease entirely during the pandemic. I’m so ready to support research and get involved but I’m finding it confusing to know what to support. There seems to be about 3 different organizations and within those, I’m finding sub-groups that cater to specific mutations. I know you’re well connected and have been fighting this for a very long time. Perhaps, in one of your future posts you could give some tips on how and where to begin?
Thanks for keeping it real.
Thank you sweet friend
On Sat, Nov 7, 2020 at 9:49 AM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” November is Lung Cancer Awareness Month. I have said > before that I don’t do months. Lung cancer is weeks, days, minutes, seconds > for me. Year round. In November many of my fellow advocates devote a lot of > time to raising awareness–the squishiest” >
Sending love to you and Diane. XOXOXO. Karen