A year of change

My friend John died July 1. August 8, I had minor surgery to remove a basal cell skin cancer from my nose. I fought off a cold in September, another in October, the flu in early November and an intestinal issue last week. This weekend marks the seventh anniversary of Jane’s death. My mind, my body, and my soul are tired. Something needs to change.

I need a real break…

Change has very much been in my mind much of the last year. Too much of what I am doing seems pointless. Much of what isn’t pointless, others do far better than I can do. I’ve always believed one should let other people take over when they’ve proven they can do the job better. In those areas, it’s time I did that.

Change over seven years

We have literally dozens of online and offline support groups for NET cancer. Those groups spread the latest NET cancer treatment information to patients and their lay caregivers quickly and efficiently. Ronny Allen and others have taken on the task of putting the latest knowledge into lay terms. Ronny’s site dwarfs this one in every way that matters. It’s time for me to move on from that piece.

Something needs to change.

The Carcinoid Cancer Foundation has set up a place for patients to tell their stories on its website. Increasingly, patient stories make the local print and broadcast media across the US–and across the world. There is more to do there, but the job is getting done better than I can do it. It’s time for me to move on from that, too, except where patient experiences with specific treatments are concerned.

The change grief creates

When I began this, Jane’s story needed to be told. I’ve told it. I’ve told it from every meaningful angle–likely in more intimate detail than anyone needed or wanted to hear. I have also told the story of my grief to the NET cancer community in far greater detail than most would want to hear.

It’s time for me to move on from that piece.

That grief has driven me to a kind of madness. I live too much in a form of solitary confinement. I spend too many days and nights alone with little more than a keyboard and disembodied voices for company. Even when I go out, I am too aware of being alone in a crowd–even when I am out with friends.

Where Walking with Jane began

When I began this work seven years ago, I saw three things that needed addressing: funding, medical awareness, and public awareness. While we have seen improvement over the last seven years, those remain the three intractable problems that stymy our efforts. We can’t fund research without money. We can’t get better diagnostics without greater medical awareness. We can’t get money in the quantities we need without greater public awareness.

That grief has driven me to a kind of madness.

At some point, I lost track of those three things. When patients asked questions, I got caught up in answering those questions. When patients needed emotional support, I did what I could to answer that need. When caregivers needed an understanding ear to listen to them, I tried to do that.

Unexpected change

I forgot I am one human being. In trying to be all things to all people I could forget the burdens I carried for a time. And I could ignore the larger issues I set out to find answers to that seemed beyond my powers to achieve. At least I could feel I was doing some immediate good.

…funding, medical awareness, and public awareness.

My ego got involved, too. I wrote, day-after-day, for years, for an audience of 25-30 regular readers. They were all people I already knew. I needed to attract a general audience that had not heard of NET cancer before who would be moved to do something by Jane’s story. And I couldn’t do it–I couldn’t create that audience.

Change in audience

Without the patient and caregiver audience, I’m not sure what I would have done. One can only write in a relative vacuum for so long before doubt climbs on board. I have no doubt telling Jane’s story has helped many patients. I have no doubt those stories will continue to prove helpful. But telling that story has done little to reach the outside world with the NET cancer story.

My ego got involved, too.

This website has largely lain dormant over the last year. Some of that had to do with helping care for my friend John. Some of it has had to do with my own health issues–both physical and mental. But a big chunk also has had to do with my own frustration. It seems, sometimes, that everything I put my hand to fails–but the moment someone else picks up that same task, they succeed.

Moments of doubt

And I can’t convince myself that somehow I’ve inspired them. People say that to me with some frequency but I don’t see it. They see a role that needs filling and they fill it. Sometimes, after they are well started, they see something I did or am doing. But the thing that started them had nothing to do with me–just with the need I failed to fill effectively enough to make the difference they make.

This website has largely lain dormant…

The last 7.5 years have been the most difficult of my life. They began with Jane’s NET cancer diagnosis and her doctor’s confession that he knew nothing about the disease. They’ve included rising and dashed hopes, multiple deaths, dozens of projects started but never finished, and more mental and spiritual anguish than I can describe. We’ve seen much change in the NET cancer universe over that time–but not nearly enough. We still have no cure.

The battle continues

I don’t walk away from a fight just because the opponent refuses to go down easily. I don’t give up over my own failures–or anyone else’s–either. But sometimes one needs to consider a change in tactics.

…the need I failed to fill…

The focus of Walking with Jane will remain NET cancer. But a return to first principles–and first goals–seems in order. We need to raise public awareness of the disease for two reasons.

Public awareness focus

First, we know there remain many people out there who have NET cancer and don’t know they have it. They suffer the various vague symptoms and travel from doctor to doctor looking for answers–answers the doctors don’t have because they can’t suspect what they’ve never heard of.

I don’t walk away from a fight…

Second, only by broadening public awareness can we generate the funds we need for the basic research that will open the door to real progress on treatments and potential cures. We can’t continue to rely almost exclusively on funding from donations from wealthier patients and their families for the research we must have. A broader donor base that includes both patients and non-patients will generate more funding than either group alone.

Physician awareness must change

But public awareness is not enough. We also need far better physician awareness than we have. The NET cancer landscape has changed substantially in recent years–but primary care doctors remain largely unaware of the existence of the disease, let alone the changes in diagnostics and treatments.

A broader donor base…

Virtually every day a NET cancer forum patient reports conversations too similar to what Jane heard on the day of her diagnosis. Worse, many doctors who do have knowledge of the disease work from a knowledge-base that is a decade old or more.  That, too, needs to change.

Revamping our approach

Starting almost immediately, then, Walking with Jane will begin reinventing itself. We’ll focus on general physician and public awareness in the coming year, as well as fundraising. We’ll continue trying to support patients with first-person experiences with new treatments. But I’ll write far less about Jane and spend significantly less time monitoring patient support groups–or writing things aimed at those groups, myself.

…public awareness is not enough.

In mid-January, we’ll undertake the first major redesign of this website since its creation in 2011. We’ll create separate tracks for patients, primary care doctors, and the general public. We’ll do more to link patients to other sites that do a better job of addressing their concerns than we can do here. We’ll use our Facebook page in different ways than we do now.

And, in the year ahead, we’ll do more general information leafletting in public spaces, as well as other awareness focussed events for both the general public and physicians.

My own needs

But I’m tired. John’s last days took a lot out of me. Memories of Jane’s last days are tearing me up inside. I hurt physically, mentally, emotionally, and spiritually. I need a real break–or at least to slow down. I have a craft fair I’m committed to and a Facebook Awareness Campaign that runs through the end of December. The awareness campaign is largely already designed–most of that is simple posting and sharing.

Starting almost immediately…

So after December 17, I’m taking some time off. For about a month, with one exception, I’m going to try not to think about NET cancer. I may take a trip, do some writing, take some pictures…or I may just work on some house projects I keep thinking about doing but never get to. A few weeks without structure might make a good change for a man who plans just about everything.