In late 2017, I signed up for a few list-serves specific to my disease. Never before—26 years since diagnosis—had I done that.
These virtual groups did not exist a quarter-century ago. The technology was not available. They could be found in their earlier, physical form—support groups in larger communities—albeit in small numbers.
I followed the online conversations for weeks and was consistently impressed with the free-flow and sharing of, in many cases, high quality information.
The availability for folks to connect this way, online, is incredible, creating a hive of activity and an informal library of information.
It’s amazing how knowledgeable some of these participants are about prognosticator factors, mutations, novel targeted therapies, and the clinical trial and drug development pipeline.
It’s astounding: there have been more drug breakthroughs for my type of leukemia (CLL) in the last few years than the previous two decades combined.
One particular group’s conversations are regularly monitored by a renowned academic clinician-researcher, who often chimes in to set the facts straight or provide additional insight; a true gift for any group to have an expert pop in and out.
One day late last year, after following the above list-serve, I carefully crafted my first message, and sent it along for the moderator to review.
It did not go well.
I’ll get back to this, but first I want to share a little backstory…
In 1991, when I was first diagnosed, it was recommended that I find a local support group for my particular disease. I did not take that advice, opting instead to continue to learn, on my own, as much I could about the biology of the disease, and the typical natural course it might take. I also focused on the limited treatment options at the time—those approved, and those in the development pipeline—for when absolutely necessary.
Sadly, or perhaps shortsightedly, I was not interested in hearing from other patients in my predicament. At least not initially. Candidly, as a 28-year-old with an older person’s disease, I was in a different phase of life. I felt that my medical and personal circumstances were unique to me.
And, interesting to note, this was many years before the technology existed to differentiate the myriad subtypes of CLL, each of which can greatly inform the likely course of disease.
Longtime readers know I’m a proactive guy. And maybe I’m a bit self-centered, perhaps even lacked empathy back then. The thing is, I pictured a support group of those with CLL as a few older folks commiserating about their disease symptoms, life complications, and family issues. It just didn’t connect with me at the time.
I can’t even say it was about privacy—I didn’t require much then and, of course, now, my medical history and personal thoughts is literally an open book, available for anyone to see online.
In those earlier days I was clearly focused on grabbing my own oxygen mask first (like on an airplane); the act of self-preservation.
Once I got a couple years under my belt, and was well on my way to completely changing my lifestyle to create an anticancer environment, I felt I had something useful to contribute to a support group. I had matured and learned so much.
Had I participated in support groups in the early days of my disease, I would have listened intently, and, at the appropriate time, would have shared how I was becoming the healthiest survivor I could—physically and psychologically.
This would have been my opportunity to give back, to pay it forward; to provide useful, relevant, evidence-informed material—ideas on creating health in the face of a life-limiting diagnosis.
But that day never came. I chose not to give back—in that way—in the setting of group support. Deep down, I felt most people would not be receptive to my approach. I believed my words would fall on deaf ears. I thought I would be frowned upon. And, frankly, I didn’t want to take that chance.
I continued learning and healing on my own, only sharing it with close friends, family, and my managing medical team, to the extent they were curious or otherwise interested.
Years went by. I went on to achieve two remarkable clinical outcomes without the use of conventional therapies (notwithstanding the removal of my spleen at diagnosis, to reduce the tumor burden and to avoid a life-threatening chance of it rupturing from the five pounds of leukemia cells it contained).
Later, I wrote my book. My clinical case was documented in the medical literature. I started my personal blog, and began to share my story and approach in front of large audiences of physicians, and survivors.
In sum, this was my way of giving back—to reach as many folks as possible with the things I learned, sharing my messages about ‘health creation honed over decades’.
…back to my list-serve group experience.
Weeks after following the discussions in the aforementioned group, I sent this note:
Subject: Lifestyle/Behavioral Modifications and CLL
I have been following this group for several weeks now. It’s been a rewarding learning experience, especially as it relates to the fast-evolving targeted therapies and new combination therapies, some including chemotherapy agents that have been around for decades.
Next year will mark my 27th year since being diagnosed with CLL.
I have successfully managed my disease for many years using lifestyle change.
My original goal was to become the healthiest cancer patient I could be—and by being proactive, to hopefully have a positive influence on the underlying CLL.
So far I have not seen anything from the group regarding the core determinants of health—such as nutrition, stress reduction, physical activity, and restorative sleep.
Is this an area that the group may have interest learning more about?
Within minutes, this came back:
You asked: “So far I have not seen anything from the group regarding the core determinants of health—such as nutrition, stress reduction, physical activity, and restorative sleep. Is this an area that the group may have interest learning more about?”
The answer is no. That is not what this list is about. It’s a medical group. Please do not use this list to advertise.
So let me get this straight. This is a medical group. The moderator implies that lifestyle has no bearing, no underlying impact on the physical, psychological, and emotional health of survivors—and therefore the disease burden itself. That the things I am inquiring about—and ideally would like to share—have no place in a ‘medical group’.
To be fair, this type of response would not have been a surprise a quarter-century ago, when I was diagnosed. The medical literature was much thinner regarding the impact of lifestyle to prevent cancer, manage disease, or to help ensure long-term survival.
But this is 2018. Any physician, healthcare provider, allied health professional—or gate-keeper of a leukemia list-serve ‘medical group’—should advocate for the core tenets of health creation that support a cancer survivor’s underlying immune function and overall wellbeing.
The moderator said, “Please do not use this list to advertise.” Though I have a book, I believe in engaging via education—through the provision of relevant content, distributed with consistency, that helps the human condition. That is the purpose of this blog, my collective efforts are freely offered, and do not attach to commerce.
In this case, I believe the well-intentioned moderator simply did not take the time to consider what value my voice, and my well-chronicled experience, might bring to the discussion.
After all, the point—the goal—is to add to the conversation and help improve lives. That was my singular mission.
While I appreciate that many groups may be approached by ‘sketchy’ joiners for whom members are an intended cache of potential ‘customers’, it’s vital for moderators to exercise patience and apply due diligence in order to separate those with a sales agenda from those with genuine, well-meaning, potential life-changing information.
There is excellent information to be gained by support groups which are moderated, and contributed to, by educated patients and, sometimes, expert physician-researchers. It is important to note that many people find comfort in speaking and sharing with others who have the same underlying type of disease.
We learn from each other, from evidenced-based medicine and well-documented patients’ narratives.
Once upon a time, doctors did that teaching. Now, most physicians, including oncologists, are on a nonstop treadmill, with the demands of having to see patients in rapid-fire succession.
While the physicians and oncologists fulfill significant roles, it is essential that all patients take more time to focus on their inner host. The latter is a topic that is hugely overlooked, and one that I often cover in this blog.
When that host is you, it is paramount, as you invest in becoming your healthiest self, to embody this fully. Then share these important messages with every support group attendee, list-serve participant, and cancer survivor on the planet.