An accidental journey to the past

Something happened overnight I don’t have an explanation for–but that has caused me to think about a new paradigm. A post from early 2012 decided to repost itself as though it were a new post. I’ve taken steps to ensure the security of this website and other venues we use to post information since discovering this early this morning.

We need a renewed vision that begins with patients and caregivers…

I also went back and looked at that post and realized how much my thinking has changed since 2012 when I wrote that post. At the time, I saw Walking with Jane very differently than I do now–just as I saw the fight against carcinoid/NETs differently than I do now.

Paradigm change

My vision at the time was not very clear. It was too much framed by grief and rage and failure. I understand the whys and wherefores of that vision: Jane had been dead for just over a year and those wounds gnawed at my mind constantly; I had made–for me–a huge financial commitment I was not certain I could manage; and I faced a disease that had suffered from a large dose of less-than-benign neglect for more than 40 years.

…that has caused me to think about a new paradigm.

I felt an enormous fresh weight on my shoulders I had no idea how to deal with. The weight has not grown less in the intervening months–I have just grown more accustomed to it and found ways to let others bear some of that weight on occasion. I’m not very good at the latter, but am trying to get better at it.

Toward a team of our own

The piece I wrote then was called A Jimmy Fund Marathon Walk team of our own and we still need such a team at times in one sense: NET cancer, carcinoid, NETs, carciNETs, lungnoids–call it what you will–truly does need a team of its own. While I’d like to see a world where the various cancers are not competing with each other for attention and research dollars, that competition is very real. And this form of cancer has truly gotten the short end of the stick for more than 40 years.

I felt an enormous fresh weight on my shoulders…

In the months since I wrote the original piece, Walking with Jane has traveled in a very different direction than that piece proposed. Within days, we had combined forces with the Caring for Carcinoid Foundation to set up what we hoped would be a larger team than either of us could create individually. That team added the children and friends of Hank Landers to the mix as well that year.

The new paradigm

Those decisions created a new paradigm for me: the need to bring together all the diverse groups of carcinoid and NETs patients and caregivers into a united front against the disease. That movement took another step forward this spring when Robert Ramsey, who lost his wife Anne before Jane was even diagnosed, joined his Kulke’s Krewe team with ours to form Caring for Carcinoid Walking with Jane and Hank and Anne.

…we still need such a team at times in one sense…

As I have become more involved with both the patient and caregiver communities over the last few months, I’ve come to realize how many faces are attached to this form of cancer. Each has a unique and tragic story that needs to be told and cherished and remembered. It is, at times, overwhelming. Carcinoid/NETs patients come from every social class, every race, every part of the country.

Moving toward unity

But our voices are too often solitary, too easily ignored. We are often the only people within miles who have even heard of the disease, let alone faced its consequences. Too often, we face doctors who know nothing of the disease and insurance companies who want to treat the disease as an annoying drag on their bottom line.

Each has a unique and tragic story that needs to be told…

But we are beginning to band together. There are multiple online support groups and increasing numbers of in-person groups as well. In them, we can see the beginnings of a movement that will increasingly pressure the medical community for increased commitment to research and treatment–and insurance companies for better access to what those doctors and researchers discover.

Time for a true alliance

For too many years, patients and caregivers walked a too lonely path. That is beginning to change. We need to do all we can to nurture that change. We–all of us–need to spend some time thinking about how best we can truly form an alliance to conquer carciNETs that others will recognize and listen to.

But our voices are too often solitary, too easily ignored.

We need a renewed vision that begins with patients and caregivers and ends with the death of this hideous disease.

–Harry Proudfoot

Chairman, Walking with Jane