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

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

Shared Decision Making Summit 2016: An Unofficial Transcript

Thank You, Jody

This post is in response to the recent announcement that Jody Schoger, co-founder of the #BCSM Chat and Community, has entered home hospice as her treatment is no longer effective. Jody has metastatic breast cancer.

I posted this on Facebook but want it to live here on my blog as well.

*  *  *  

Dear Jody,

The impact you have had on my life is profound and far-reaching, all the more so because you were always "just" being you, doing what you do.

Jody, you're The Person who quickly "saw" me, reached out and welcomed me to the wild wild world of Twitter in late 2010/early 2011.

You encouraged, mentored, and supported me in so many different ways.

Here's one of the most important: I don't know if you know this, but you are one of the advocates who set the example and inspired me to cease posting anonymously and take the terrifying step of being Out to the world at large as a person who has had cancer. And this was at a time when I was so extremely vulnerable and fragile in body, mind and spirit, just months after finishing treatment and surgeries for my 3rd cancer.

You are responsible for helping me somehow make it through that terrible day I experienced at the first breast cancer conference I naively attended: C4YW, February 2011: I didn't understand that attending a conference could trigger me, because I didn't understand that I had PTSD from Medical Trauma. Your DMs (direct messages) with me that day were a precursor to what we came to fondly call the #BCSM batsignal.

A few months later, you encouraged me to apply to Stanford Medcine X, we were both accepted, and you offered to be hotel roomies. The first time we spoke on the phone (to make those arrangements) we joked about hopefully not being axe murderers :-)

This photo of you is from that hotel room, after we had finally met in person. I will never forget how much FUN we had, feasting on delicacies we picked up at the nearby Trader Joe's, and goofing off by speaking in French accents.

I feel like I captured your sense of humor, joie de vivre and playfulness in this shot. Such a necessary contrast and corollary to the seriousness of our purpose.

The other photo symbolizes, to me, the profound impact you have had on the world beyond Breast Cancer. 

You, Hugo Campos and myself at that first Stanford Medcine X (technically, it was Med2), members of that group of founding ‪#‎ePatients‬ who, thanks to Larry Chu's invitation and challenge, came together to co-create and participate in an academic medical conference as equal stakeholders.

Jody, know that I carry you with me always.

Thank you for lighting the path and showing me the way

All my love and gratitude,

Liza

Update, Wednesday, May 18, 2016: I woke up to the news that Jody died this morning. Please read this beautiful tribute to her by #BCSM's co-founder, Alicia Staley: "Good Night, Jody."

Tamoxifen, Not a Love Story. Part One.

Here is an excerpt from a recent post on the #BCSM website:

Endocrine Therapy Side Effects – Your Input Requested! By DrAttai On April 13, 2013 · 7 Comments

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the title is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying” (...) Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. (...) Thank you all in advance for your help! After the talk, I’ll post the slides.

Here's my input:

I have had three primary Breast Cancers. Each was ER positive.

After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete’s resting heart rate, and I have always been a “tough” person with a high tolerance for pain.

So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get “hot” but nothing too extreme. That, I could live with.

Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares* where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them…. So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. 

Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff — a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn’t have been able to consider continuing to exist like a zombie.

I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail’s pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. 

I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with “treatment” (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as “cancer treatment” by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed “treatment” and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen??

If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment.

When Tamoxifen has side effects like these, you don’t look sick, you are not bald, your blood counts are fine…. your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us.

Thank you for reading,

Liza Bernstein

*By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

PS: here's the post I wrote about how this #BCSM initiative is a form of collaborative medicine in action.

More Collaborative Medicine In Action, #BCSM Edition, Part Two.

It began with a post I caught on Facebook:

Tweets ensued, including:

@itsthebunk - you asked for it! Endocrine Therapy Side Effects - Your Input Requested! bcsmcommunity.org/endocrine-ther… #bcsm
— Dr. Deanna Attai (@DrAttai) April 13, 2013

And now, on the #BCSM website, a second opportunity for patients to contribute to the advancement of medical knowledge (I wrote about the first one here). Yes, that does sound pretty grandiose! What I mean is this: when you are experiencing the type of side effects a drug like Tamoxifen can induce, you can discuss them with your oncologist, you can vent about them at support groups, you can blog and tweet about them ad nauseam. That's all fine and dandy....

But to be able to give that information to a physician who not only cares deeply, but who is planning to use that information in a presentation she is giving at a medical meeting.... well, that does get you thinking pretty big.

I continue to be excited and inspired by what we can accomplish when we harness technology to facilitate change.

Collaborative Medicine in Action

It began with a tweet, that I RT'd after reading the related post on the #BCSM website.

Participatory medicine! #MedX RT @stales: Breast Cancer Community: Unique Opportunity 4 Patients & Advocates! bcsmcommunity.org/unique-opportu… #bcsm
— Liza Bernstein (@itsthebunk) April 11, 2013

Others chimed in, including:

RT @chemobrainfog: Thanks @jrgralow for asking for input BEFORE study is designed. ow.ly/jYIMB ==== "patients as partners" #bcsm
— Alicia C. Staley (@stales) April 11, 2013

And:

Thnx! MT @boobcancerninja: I did it! MT @seattlecca: Pts help design clinical trial answering 5 Qs via #BCSM [SURVEY] ow.ly/jYVnJ
— Julie Gralow (@jrgralow) April 11, 2013

I've excerpted the introduction from that post here:

Unique Opportunity for Patients and Advocates! 

By DrAttai On April 11, 2013 · 13 Comments 

Here is a unique opportunity for patients to have their voices heard, BEFORE a clinical trial gets approved. Many thanks to Dr. Julie Gralow (@jrgralow) from the University of Washington for asking for advice from our community. 

Patient Survey Regarding Follow-up of Early Stage Breast Cancer  

We are seeking patient input through this survey to help in planning a national clinical trial designed to determine how to optimally screen for breast cancer recurrence.

For details about the clinical trial being planned, please read the rest of the post. It's important and fascinating. 

Just as important and fascinating is the ensuing dialogue, much of which was sparked by the last  (and only open-ended) question in the brief and easy Patient Survey. I saved my answer to that question, and am reproducing it here: 

"Last Question: This study would allow us to study many other breast cancer “survivorship” questions during long-term follow-up. What are the main cancer and/or treatment-related problems that you think we should consider including in this study? (for example, this might include difficulty concentrating/”chemobrain”, menopausal symptoms, numbness/tingling, depression/anxiety, pain, weight gain, sexuality/body image, fear of cancer returning)."

"All the items mentioned in the above question should be included.

I would be most interested in seeing how you would approach studying these additional important issues so as to get actionable data.

People who survive early stage BC after receiving adjuvant treatment (I have had three primaries myself, so I know from experience) end up with a host of long term side effects, from chemobrain/cancerbrain to higher instances of anxiety/depression/"ptsd"-symptoms, etc. I know you know this too.

Another aspect of long-term survival is the psychological impact of being watched so carefully by one's medical team (pro = more likely to find a recurrence or relapse sooner; con - heightened anxieties, etc due to fear of recurrence). Being followed every few months with blood tests could both give a sense of reassurance and heighten the anxieties. This also contributes to the isolation many survivors experience. You have to keep going back for follow-up visits, keep wondering if IT has returned, while most everyone else you know continues with their usual routine.... This is what you just have to learn to live with.

Meanwhile, now that I am in the position of basically having to rely on hoping I don't get any symptoms, it is terribly anxiety-producing. My oncology office happens to order tumor markers during long-term follow up, so if mine happen to go up, I will be one of those few women who will have an additional possible clue as to whether I have developed mets. I also understand there isn't always a 1-1 correlation between marker levels and the development of mets. More uncertainty!

This is a great idea for a study. I just hope there will be other more reliable pathways to detecting Early Stage Mets (for example, non-increased-radiation studies: I'm tapped out for PET and CAT scans, per my oncologist, due to the numerous scans/mammos, etc I've already had in my 19 yrs of 3 BC primaries. We will only use those in an emergency at this point.). We need better tools!

I appreciate your thoughtfulness and intelligence in reaching out to us in these preliminary stages of your trial. My name is Liza Bernstein and I can be reached via Twitter at @itsthebunk. I'd be happy to contribute further to your thinking process during this development process and answer any questions you might have, if you were so inclined.

Thank you,

Liza Bernstein"

Not surprisingly, some of my concerns are echoed in the comments from other survivors, and the great thing is that the researchers are addressing them as they come up. 

Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.

This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.

On The Importance Of Being Disruptive

Excellent quote from ePatient Advocate, Regina Holliday, from her post about her petition to Hallmark to create hospice cards. 

She is being noticed. 

Forbes has picked up the story, and the petition is gaining signatures.


Innovation requires this kind of intelligent courage too.

I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard. 

~Regina Holliday