Category Archives: Personal statement

An announcement

awareness, Boston Marathon Jimmy Fund Walk, Grief, Personal statement
I'll keep walking through the morning dark and into evening as we try to find answers to NET cancer, but in 2021 I'll take a step back for a year. I'll still walk, I'll still ride, but I need a year for myself to heal the wounds of the last decade.
I’ll keep walking through the morning dark and into evening as we try to find answers to NET cancer, but in 2021 I’ll take a step back for a year. I’ll still walk, I’ll still ride, but I need a year for myself to heal the wounds of the last decade.

Dear friends,

As many of you know, December of this year will mark the tenth anniversary of Jane’s death. This August will mark the tenth anniversary of her NET cancer diagnosis. This winter marks ten years since we were both filled with worries about her rapidly declining health.

But this year also marks 40 years since her first symptoms appeared—and 35 years since I first encountered the edges of those symptoms and the effects on her life. Those effects almost immediately began to affect my own life.

Since Jane’s diagnosis, NET cancer has become my constant companion. Since her death, I have devoted seemingly every waking minute to trying to broaden awareness of the disease and to create funding for research to bring about its demise. I don’t want anyone to go through the 30 years that Jane did between her first symptoms and her death. I don’t want any spouse to encounter the things I did because of her illness—and because of her death. 

In real terms, that meant drafting my first pamphlet on the plane to Seattle less than a week after we buried Jane, working on that while I was there, and drafting my first five-year plan for what became Walking with Jane on the flight home. Since then, I’ve written hundreds of letters and articles and proposals, given speeches, organized events and teams, walked and cycled hundreds of miles, inspired a few hundred people, and raised a small pile of seed money others have invested in research I hope will lead, eventually, to a cure.

Despite all of that, I’m frustrated—and still, it seems, deeply in mourning. 

And I’m mentally and emotionally exhausted. 

I took the last month off. I tried not to think about NET cancer, tried not to think about the patients we’ve lost in the last 10 years, tried not to think about the patients still dealing with the disease, tried not to think about research or funding or awareness. 

It helped. 

But it also underlined how badly I damaged I am and how much I need a much longer time away where I can focus on healing the injuries in my soul I’ve avoided dealing with since Jane’s death. I’ve never fully come to terms with that loss—and I need to.

That said, I’ve decided to declare 2021 a sabbatical year for me. I won’t abandon NET cancer—but for that year, I’ll place it firmly on a back burner. I’ll still do the Marathon Walk, still do the PMC, still engage in fundraising for those things—but NET cancer will cease to be an 8-12-hour day, six to seven day a week commitment for that year. I want to spend a year as a team member, not as a captain—or in any other substantial leadership role. 

My plan is to return to everything fully in 2022, barring my death or incapacitation.

Some will suggest I should not put this off for a year—that I should take this year. I thought about that—and the idea is supremely tempting. But I’ve made some promises that need keeping—and I need to recruit some people to fill in for me to keep the #cureNETcancernow group and the webpage and a couple other things going in my absence. Momentum matters—and I don’t want to risk even a small disturbance after a decade of all of us working very hard to really get things rolling on NET cancer.

Others may argue I should just keep plowing forward. Part of me agrees with that sentiment. I want NET cancer dead in the worst way imaginable. But the research I’ve seen over the last ten years convinces me we face a much longer fight than I imagined at the start—than I suspect many of us imagined at the start. My thinking is that I will be much more effective if I take the break my body and soul call for in 2021—both now and in the future. It will create a sense of urgency that will carry me through the coming year—and a renewed strength for the years thereafter.

Let me repeat: I have no intention of walking away from this fight permanently. I simply need to sit down for a bit before I fall down. 

What I will need is for people to take on some of the tasks I’ve taken on for a short time so I can come back to the fight refreshed.

I hope all of you had wonderful holidays. I look forward to seeing all of you in the year ahead.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Vote for Greta for Patient Hero

awareness, Personal statement, Uncategorized

My friend Greta is dying.

 She’s dying of NET cancer.

I can’t stop that. No one can. 

I watched the same disease kill my wife. I know with ghastly precision what Greta is going through—what her family and friends are going through.

Before this final turn, Greta was nominated for the Hero of Hope Patient Award. She’d like to win it. I’d like her to win it.

Her biography is at the link, if you need more than my endorsement to vote for her. 
So follow the link and cast your vote for her.

Today is the last day of voting.

Please.

https://conquer-magazine.com/2019-hero-of-hope-patient-award?fbclid=IwAR1jWAQdxJ8yIMHeDqZ2dd7LCcXIEo2KRhjhw8K99yDcdY09Tx1Qg-LO1zE 

My last arrow? I hate this dragon

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month, Personal statement
I lost Jane nearly nine years ago. I'm still fighting her cancer--but I'm nearly out of arrows.
I lost Jane nearly nine years ago. I’m still fighting her cancer–but I’m down to my last arrow.

The arrow I have

I have to admit, I’m worried. In two days we launch a social media campaign on Facebook and Twitter aimed at PCPs, NPs, medical schools and the general public about NET cancer. It’s the last arrow I have in my quiver and I’m far from sure it’s enough to make this dragon even wince. But it’s the arrow I have, so…

I made a promise.

This campaign has to go viral in ways nothing I’ve ever posted–or written anywhere on anything–has done. It has to reach communities I’ve never figured out how to reach effectively. We’ve worked on it for months–and I’m still tinkering with it today–will likely still be doing so tomorrow.

Hoping for an avalanche

Earlier this year, I described what I’ve spent the last nearly nine years doing as standing on top of a mountain throwing pebbles, hoping to start an avalanche that would wake people up to the reality of neuroendocrine cancers.

It’s the last arrow…

I’ve watched in horror as the numbers of diagnoses and the number of patients has climbed year after year. We stand at the edge of NET cancer losing its rare disease status, yet it remains a disease neither medical professionals nor the public has any real awareness of.

Time’s arrow

It’s been a decade since Jane’s H1N1 flu battle opened the gate to her NET cancer’s closing act. It’s been nine years, two months, and 14 days since we knew what she had. We’re barely seven weeks from the ninth anniversary of her death.

…standing on top of a mountain throwing pebbles…

In that time, I’ve raised some money, inspired some people–thrown lots of pebbles–but NET cancer remains largely unknown and largely underfunded. And I’m down to that last arrow–that last pebble. And I’m afraid it isn’t going to be enough.

Death and failure

I’ve lost track of how many patients I’ve known have died this year. There have been too many. I know more will die before this year ends. Each one tears at my soul–each one reminds me we’ve failed–that I’ve failed to honor the promises I made myself when Jane died: to raise awareness so no one hears what we heard the day her doctor told us what she had–“I’ve never heard of this cancer before;” to create the money that would help to find a cure; to find the money that would make an early diagnosis common rather than an exception.

…down to that last arrow…

I thought all those things would be easy. How could anyone who heard Jane’s story not be moved to help? All I needed to do was write and speak and advocate. These were things I knew how to do–have done all my life.

Competing voices

And I failed. There are hundreds–maybe thousands of diseases our there with the same trouble. No one knows about them except the people who have them. No one cares about them except for those affected by them. A thousand things clamor for attention every day. No one has time for the things that don’t have a direct impact on their lives or the lives of their families.

There have been too many.

Starting Friday, we will try again. Over the course of 30 days, we’ll post our 30 facts and hope they get reposted and read and will do some good. I have a plan for a follow-up project in December and January if this even sort-of works.

And then?

And if it doesn’t…

If it doesn’t…I guess I’ll try to make a new arrow or look around for some loose pebbles somewhere.

…we will try again.

I made a promise.

–Harry Proudfoot,

President, Walking with Jane