Blog Posts for the Free to Breathe Patient Support Site at HealthUnlocked.com: Information on Money, Scanxiety, and Sex

 I dig into big issues at the Free to Breathe site from time to time that are the type you talk about one-on-one with a close friend rather than something you might talk about in casual conversation. (Although maybe anything related to cancer isn't a fit topic for casual conversation...) These are three recent posts of which I am quite proud.

"If you are diagnosed with lung cancer and you are still working, one of your first questions will be “Are my working days over?” Everyone with advanced disease must face this, and even people with early stage disease can find themselves contending with permanent debilitating side effects from treatment."


"A study published last year confirms what all of us already know: scanxiety is real for lung cancer patients, and it negatively affects our quality of life. You know it and I do, too, because right now, as I write these words, I have it."


"There is a very common family of side effects that can result from lung cancer treatment, indeed from all cancer treatments. It’s something that doctors have on their checklists for assessing patient status, but it’s a rare doctor who asks about how you are doing in this area. It’s also a rare cancer patient who brings up the subject. Can you guess what this side effect could be?"




Comments

Post a Comment

Please support the EGFR Resisters Research Fund!

To help improve outcomes for people like me with EGFR mutated lung cancer, please donate to the EGFR Resisters' Research Fund. All donations are tax deductible and are in a restricted fund with the Bonnie Addario Lung Cancer Foundation, a four-star rated charity. Thank you from the bottom of my heart!


Popular posts from this blog

Telling stories to myself

Truly, I have the power - the power to make myself unhappy. The most effective way I do it is by telling stories to myself. I've been a daydreamer all my life, spinning tales that I tell only to myself. There is a common pattern to these stories: I am nearly always a central character, and they don't really end, they just peter off. Events in the stories also do not go well for me. Relationships sour, people die, projects remain undone, deadlines are not met. And the stories leave a bad after-taste in my thoughts and emotions. A while ago, I went through a period of contentment. It happened to be a time when I was blogging more actively. One day as I drove to work, I realized that I had stopped telling stories to myself. Telling stories to the world in written words seems to clear my thoughts of the dark tales, and to help prevent me from making myself unhappy. Isn't this the heart of meditation - to not tell stories to oneself, to not cling to those dark tales, to let them
Read more

My Carbon Footprint Grows Ever Larger

Image
This is how I would reword Shakespeare: Nothing offends me about my life so much as the manner of my leaving it. It’s not the disease, or the timing that makes me feel that way. It’s the staggering amount of energy that is consumed as part of cancer care - energy in the form of miles driven and plastic tossed into a biowaste disposal canister. I haven’t lived an exemplary life when it comes to the amount I have contributed to landfills. I’m not even good about composting my food waste. Still, getting sick has enlarged my carbon footprint, and I’m not done yet. There’s the matter of how to dispose of my mortal remains, for one thing, plus I’m not done with blood draws and treatments. Take the simple matter of a blood draw. Initially they were all taken from a vein. Waste generated: an alcohol wipe, a rubber tourniquet, a pair of gloves, a butterfly needle with attached plastic tube, a few glass vials, and a couple of pieces of gauze topped with a bandaid. Now, however, I
Read more

New Year, Old Dusty Blog

It’s been almost a year and a half since I posted anything here except links to paid work published elsewhere. This blog has remained in my thoughts throughout the whole period of silence.  Silent here, not elsewhere. The past year has been full of speaking engagements, patient advisory panels for pharmaceutical companies, other words in other places. What I’ve written and said has been sincere and well-researched, but has not included some things I think about. When you are writing and speaking for pay, you aren’t really free to share everything that might be on your mind. The customers for paid pieces want them to be hopeful and encouraging, to suit their purposes. My time and energy has also been invested in establishing a new patient advocacy group, the EGFR Resisters . Co-founders are Ivy Elkins, Jill Feldman, Teri Kennedy, Allen Lee, Ildiko Medve, and Colleen Sturdivant. Besides a website, we also have a closed Facebook group with over 900 members who share  treatment ex
Read more