Spoiler Alert: The Cure For Advocacy Fatigue Is Partnering As Equals

I am publishing this Twitter thread here on my much-neglected blog because the words came straight from the heart. As they tumbled out of my brain yesterday afternoon, I was reminded just how exhausting it can be to be an advocate in a system based on an imbalanced power structure. The person I address in the first tweet and the topic it refers to are not the point or the focus. The point and the focus are in the rest of the thread.

I have decided that I must be suffering from Relapsing Remitting Advocacy Fatigue (if you've ever had cancer or been close to someone who has, you know that Fatigue is the F-Word of Cancer—it does NOT mean "tired" and is not mitigated by naps, juicing, yoga, positive thoughts or much of anything else).

Earlier this year, I had written about the costs of advocacy, and later, about the imbalance in doctor and patient advocate Twitter engagement at ASCO 2019 for Symplur's blog. Looking back, I see the fatigue has been building.

It takes energy to do the work we advocates do, and then it takes extra energy, especially after gains have been made, to have to fight to be seen, heard, respected, included, and even further energy to try to do so with some measure of grace.

Hello @DrN_CancerPCP. I see you're new to twitter. Welcome! A sure way to build community is to acknowledge those who educate and add to the body of knowledge. Yesterday's main #survonc contributions, beyond @subatomicdoc's came from @maryam_lustberg @DrAttai @stales & myself. 1/ https://t.co/Xt35K04T5i

— Liza Bernstein (@itsthebunk) August 21, 2019

Two of us are are passionate patient advocate leaders (and who each happened to have had cancer three times). One of us is the first EVER to have co-founded a cancer-specific online community via a hashtag, namely #bcsm (see https://t.co/j6CUJo2jeN) — as far back as 2011. 2/

— Liza Bernstein (@itsthebunk) August 21, 2019

One thing we all learned way back when was that the best way to help a twitter community grow is to find those who are already there, listen, acknowledge those who make contributions (imagine being a guest in someone's home), and... 3/

— Liza Bernstein (@itsthebunk) August 21, 2019

... if you are trying to connect with patients and advocates as an MD on twitter, to sometimes go out of your way to include them in the conversation. That means, to acknowledge for oneself the built-in, unbalanced power dynamic. We do great things in partnership. 4/

— Liza Bernstein (@itsthebunk) August 21, 2019

If this sounds harsh, please know that so many of us patient advocates are tired of being regularly erased, dismissed, diminished, looked over, and ignored for all the hard work we do, not for pay, but because we feel called to help based on what we've experienced. 5/

— Liza Bernstein (@itsthebunk) August 21, 2019

We educate ourselves, we attend conferences, we read journal articles, we do peer-to-peer counseling, we help newly dx'd people get through the early panic, we help them communicate with their MDs, self advocate, get a handle on their new realities... 6/

— Liza Bernstein (@itsthebunk) August 21, 2019

We reach out to our twitter networks to connect an offline person to a 2nd opinion, we connect patients who've been denied a tx by their insurer to our contacts inside the pharma companies to help them get expedited access to meds, we connect pts to clinical trials.... 7/

— Liza Bernstein (@itsthebunk) August 21, 2019

Many of us are told by clinicians here that we help them give their patients better care. In breast cancer we fight the dominant Komen-driven narrative and the pink madness, and advocate for donation money to actually fund research into Metastatic disease. 8/

— Liza Bernstein (@itsthebunk) August 21, 2019

In lung cancer we fight the smoking assumptions, help raise awareness about EGFR, ALK, ROS1 and other mutations..... We work across cancer dxs with our fellow advocates, we work across professional titles to collaborate for things to be better for all (including clinicians). 9/

— Liza Bernstein (@itsthebunk) August 21, 2019

The best way to do that is to collaborate as equals within an unequal system. It might take a few extra minutes to hunt down all the replies, twitter handles, and quote tweets related to yours, but I assure you that we are a friendly bunch and all appreciate being included. 10/

— Liza Bernstein (@itsthebunk) August 21, 2019

I know based on 9 years here on Twitter that that's how to build a community of colleagues, ignite working relationships, & deeply rewarding friendships. I end my rant/semi-tweetorial by wishing you well. I hope we can all work together to help cancer pts & their loved ones. FIN

— Liza Bernstein (@itsthebunk) August 21, 2019

The irony of this thread is that hours beforehand, yesterday morning, I had had an invigorating and inspiring conversation with oncologist Gil Morgan, who had reached out to me to join his international OncoAlert network in a spirit of equal cooperation. Being dismissed and erased later on—even if due to "benign neglect"—was just another reminder of how much work we all still need to do.

Thank you, Gil, for inviting me and being open to actually talking with me so that I could have a better understanding of what it is you are doing with #OncoAlert. Patient Advocates and Oncology Professionals collaborating as equals is key! I am very excited!

— Liza Bernstein (@itsthebunk) August 21, 2019

I might be in the throes of Advocacy Fatigue, but I am not stopping my work anytime soon. I know that the cure for it is to partner as equals (which is actually fun!).


In conclusion, I highly recommend this article, shared by my fellow advocate Erin Gilmer:

I think this article is useful for those coming into any movement/community. Esp sitting down and listening, recognizing all voices that came before, working with communities affected, acknowledging when they get it wrong. cc @DrN_CancerPCP https://t.co/V9aKyoAdgN

— Erin Gilmer, esq. - Health is a Human Right (@GilmerHealthLaw) August 22, 2019

Partners in Progress: Cancer Patient Advocates & FDA Public Workshop — Unedited Twitter Transcript #OCEPIP17

Who's Not At The Table? Dr. Olopade On Disparities In Breast Cancer Treatment And Research—#SABCS16

On Tolerating Uncertainty

I found this gem in my Tumblr archive. I posted it back in October 2011 and completely forgot about it.

Five years later it rings just as true as it did back then, and even more so since I attended the first Shared Decision Making Summit where I gave a presentation about my own decision making process around genetic testing. That presentation was based on this blog post in which I remarked on the value of tolerating uncertainty.

Here's the gem from my Tumblr archive:

This great quote addresses the difficult decisions one has to make when faced with a breast cancer diagnosis. It’s from an excellent blog post by Lisa Bonchek Adams in response to a post by Dr Susan Love about wishful thinking and breast cancer:

“I personally believe that the ability to tolerate ambiguity and uncertainty 

is a key part of the decision-making process.

I don’t say I’m cancer-free: I never say that.

I never say a double mastectomy means I won’t get cancer again.

I know what I had.

I know what I did.

It’s about well-informed choices.

I know what might happen…

In the end, it’s not just about the statistics: it’s about the person.”

—Lisa Boncheck Adams

Seeing RED (I mean, PINK)—2016, "True Toughness" Edition

Stronger Together Regardless of Stage: A Twitter Discussion

Saved By The #BCSM "Bat Signal" & The Power Of Community

Scene Of The Cancer Crime, Or Adventures In Cancer PTSD

This happened this morning:

I am *only* in my onc's waiting rm 4 bone density scan but as soon as I walked in tears started rolling. Argh. #ptsd #SceneOfTheCancerCrime

— Liza Bernstein (@itsthebunk) December 11, 2015

... and, from after the appointment:

Still shaking from the most benign visit to my oncologist's office. Monday is the actual follow-up appointment. :( #CancerPTSD #bcsm #ptsd

— Liza Bernstein (@itsthebunk) December 11, 2015

I've had the same, wonderful oncologist since 1994, and I've had three separate cancer diagnoses. I've therefore spent an inordinate amount of time in her offices.

Her and her partners' large practice used to be in the medical tower adjacent to the hospital. I hated that office with a passion. Those hideous pink vinyl barcaloungers, aka chemo chairs, where I spent so many toxic hours. Plus the years and years and years of regular follow-up visits ("I'm watching you like a hawk because you were so young when you were first diagnosed," she'd always remind me), blood draws, false positives, difficult conversations, agonizing decisions... not to mention the super slow and crowded elevators.

And then, they moved! To a brand new building with much less worse interior design, lots of space, and most crucial for me, no traumatic history. All was sorta kinda ok for a while, even though the regular follow-up visits still brought up their putrid soup of anxiety, terror, anger, despair and other feelings that I had come to understand were "normal," post-traumatic-stress-style reactions to what had certainly been a series of traumatic events.

Then, my positive response to the new office changed with my second Cancer diagnosis... and a few years after that, my third. I now hate that place with a passion as well. I find it ironic that I am even saying this as I do not consider myself a "hater." Maybe there's a better word to use, but I am still so shaken from this morning's appointment that I am not going to even try and scrounge around my brain to find it.

I am still so shaken because I am shocked at what I consider to be the extreme level of my reaction. It is in no way shape or form proportionate to the reason for my appointment.

I realize though, that I have had a lot on my mind lately:

1. From the Paris Attacks to the Colorado Springs Planned Parenthood shooting, to the San Bernadino shooting (to mention just a few) to the rise in popularity of fascist-style, xenophobic bullies and haters (the man with the bad hair - I am not going to dignify him with his name; the extreme-right wing party in France - ditto for them), the end of 2015 is a dark, dark place and time.

2. Closer to home: the death of Breast Cancer Advocate Maria Fowler in and of itself, and then, selfishly, the fact that it has coincided with my new and impossible-to-kick persistent cough. I've been running scenarios in the middle of the night.:

Ok, if, God-Forbid, I have Mets (Metastases, aka, Metastatic Disease, aka, Stage IV Breast Cancer), what do I do? Who do I tell? I can't tell anyone this time. I can't tell my mother. It will crush her. Where will I go? How will I support myself? I am not ready to die. I have so much left to do and I am really only just getting started, only just beginning to get some good momentum. Gaaaaaaaah!

It's exhausting to then have to sit with myself and remind myself over and over and over again that:

This. Is. Just. Stuff. In. The. Ether.
These. Are. Just. Thoughts.
This. Is. Not. Reality.
I. DO. NOT. HAVE. METS. (Fingers crossed. As far as I know. I don't want to jinx this. Gaaaaaaaaaaaah again!).
BREATHE!!!!!

3. In three days I have to return to the office for the actual follow-up visit with my oncologist.


All of the above, plus the deep-down dread that has unfortunately become a permanent fixture of these follow-up appointments is likely responsible for this perfect storm of post-traumatic-stress misery.

And then I need to remind myself, again, that yes, again, my case is unusual. I have had Cancer three, yes, THREE times. If one diagnosis does something to a person—and, oh, yes it does—well then, the effect of three.... that math is beyond me.

And, I need to remind myself, yet again, to be kind to myself (why is it always so much easier/natural to be kind to others?), that, the sooner I allow these feelings to rise up and express themselves, the sooner, like a raging flash flood, they will pass.

All of this "I need to remind myself again" sounds like and feels like hard work, and, guess what.... it is. I don't like to think of myself as a complainer, but right here and right now, I am owning it. I am complaining, dammit.

*  *  * 

On the plus side, these responses to my two tweets warmed my heart and gave me much needed comfort:

@itsthebunk Sending you love, a soft voice, a listening ear, and someone to lean on.

— Charlie Blotner (@CBlotner_) December 11, 2015

@itsthebunk man have we all been there--I wish I could hug you right now!

— CultofPerfectMomhood (@CultPerfectMoms) December 11, 2015

What Inspiration Looks Like

This is what should appear when you look up the term "inspiration."

Watch Terri Wingham's short video to Sir Richard Branson, read about her brilliant #Delhi2013 program, and join the Mob For Good with a simple RT, a blog comment, a Facebook share, etc.

Working together we can help the A Fresh Chapter Alliance Foundation send 12 cancer survivors to volunteer in India in February 2013. They are going to Delhi to serve on community projects and get to know local cancer patients.

Once their mission is accomplished, they will have had a tangible positive impact on the lives of others and, almost unwittingly, gained immeasurable personal healing as well.

Beyond that, they will have brought our vastly differing circumstances closer together and shed light on global cancer issues:  How can it be that women in Africa would rather get AIDS than cancer? How can it be that cancer patients in Vietnam must sleep on the street when receiving treatment at hospitals far from their homes?

I am so proud to know Terri and thank her for inspiring me. I hope she will inspire you too.

Here is my note to Sir Richard Branson in support of #Delhi2013. It's one of the many comments to Terri's blog post. I hope you'll add yours!

Thanks for reading.

Liza

* * *

To Sir Richard Branson,

It’s a No-Brainer: Virgin Airlines is the perfect company to sponsor the A Fresh Chapter Foundation’s maiden voyage. Visionary, cutting edge, social, driven, global, daring, walking the talk (in this case, dare I say Flying the talk!)…. these are just a few of the qualities you and Terri, and Virgin and her foundation share.

After a cancer diagnosis obliterated Terri’s life as she knew it, she fought back, not only to regain her health, but to explore the world, and, here’s what’s truly outstanding: to Give Back. She discovered for herself that there is no greater healing power than to care for others. She could have stopped there.

With that, however, she chose to empower fellow cancer survivors to understand this wisdom and put it into practice for themselves and those they will soon be serving on the other side of the world.

Starting with nothing, she has built a solid program, forged international alliances, recruited 12 outstanding cancer survivors, and organized all aspects of their mission to volunteer in Delhi, India in February 2013.

Her drive, genius, gigantic heart and brilliant mind led her to accomplish this in a very short time. All that remains for this mission to succeed is for Virgin to become our Official Airline.

I say “our” because amongst other things, I am a 3-time cancer survivor, a member of the weekly #BCSM (Breast Cancer Social Media) Twitter chat, a recipient of an #ePatient Scholarship to #MedX — Stanford University’s Medicine X — and I am looking forward to volunteering with Terri and her foundation on future missions to Africa and South America.

I urge you to partner with us!

Thank you for your attention,

Sincerely,

Liza Bernstein

Twisted Path

I don't know why cancer hijacked my life three times.

I have pondered the question ad nauseam and on any given day can tell you that "there's a reason for everything," or that "%$@# happens" or both or neither.

I don't have a family history of cancer, I've always eaten on the healthier side (I actually liked broccoli as a kid) and have always been an active person. Ironically, each time I was diagnosed I was otherwise Healthy -- yes, definitely Captain Healthy with a capital H for emphasis.

And throughout these three episodes, the only thing that ever made me "sick" was the treatment to rid me of the lethal disease. That's one of the reasons why the term "hijacked" seems so appropriate.

Being sick, being a patient, spending hours and hours and hours in Doctors' offices, putting medication and chemicals in my system..... none of these things were ever on my radar or even on the most remote edges of any wishes, desires, dreams and/or plans I might have had for my life. The notion of a hand of cards makes some sense. I have been dealt some terrible ones.

It's complicated. I've had cancer three times--three primaries, i.e., each one brand new from scratch--but each time it was caught early. That's considered lucky.

But having a body that allowed tumors to form--that's not lucky. And having to go through treatment to remove it and prevent it from spreading, that's not lucky either. State of the art** treatment is still a brutal combination of Slash, Burn and Poison (surgery, radiation and chemotherapy), aka Torture. I consider it Barbaric.

Then again, being diagnosed early, having the most outstanding medical team, having access to treatment, that's lucky because it has now literally saved my life three times.

Surviving cancer as a young woman is lucky, but it's also "unlucky" because you have to live with the aftershocks and the uncertainty (will it come back?). And on and on it goes. As I said, it's complicated.

Having to stop your life to fight cancer--talk about a source of anger and frustration. But I know I have grown and learned and continue to do so because of it.

I know that the lessons are about things like acceptance, surrender, and the true meaning and purpose of inner strength amongst other Big Life Questions.

Cancer has been a catalyst for my examination of these concepts over the past 15 years, and I realize now that they have been in and around my consciousness for as long as I can remember.

I never wanted to be sick, but I have always wanted to understand life. What a twisted path.

--Thanksgiving, 2009: written about a month after my last round of chemo.

By The Way: I don't consider cancer to be a "gift," and I don't use the words "acceptance" and "surrender" lightly!

**I wrote this in 2009. Since then I have learned a lot about genetics and targeted treatments (such as Herceptin for the subset of Her2Neu positive breast cancers) that don't compromise your entire system, and the research that is being done in that area. I highly recommend the incredible Pulitzer Prize-winning book The Emperor of All Maladies, by Siddartha Mukherjee for a comprehensive history of cancer, the "War on Cancer" and great insight as to where research is headed.