Simple truths at the beginning

Regular readers of this blog, regular users of this site, will have noticed I have written nothing, changed and updated nothing, here since March 10. I have faced some bitter and simple truths in the intervening time that have caused me to rethink what I am doing here and elsewhere.

These are all simple truths.

When I began doing this in the fall of 2011, the landscape of NET cancer was very different than it is now. There were few patients sharing their experiences. Those who were, shared them on their personal blogs. The major foundations were supplying what little scientific information was coming out but did little–it seemed to me–to tell patient stories.

Simple truths of what was

Much of the writing on the science was not very lay-person friendly, either. The language was dense “doctorese” and often difficult to follow.

I have faced some bitter and simple truths…

There were no lay-caregiver stories. Husbands and wives of NET cancer patients were too busy taking care of their loved-ones to be writing about what they were experiencing. And if that loved-one died, writing about what the experience of care-giving was like took the writer back into an experience that was emotionally very difficult in a time when children and parents also demanded care-giving attention.

Simple truths of support

Then, in very short order, two of the best, and most widely read, patient writers died. I tried to fill that gap as best I could by telling Jane’s story in–at times–excruciating detail.

There were no lay-caregiver stories.

Finally, there was the problem of emotional support for patients. While there were several regional groups holding face-to-face meetings, large numbers of patients really were on their own. It seemed to me one solution to that was an online place patients could talk with each other about what they were experiencing–and where caregivers could do likewise.

Learning new simple truths

I set out to try to offer solutions to each of these problems on this website, while equally working to try to solve the funding problem for NET cancer research–a problem that very much remains, despite good news on several fronts over the last year.

I tried to fill that gap…

My effort to create an online support group crashed and burned almost immediately. We collected infinitely more spam than patients. Privacy was a major concern I had no way to address. Fortunately, others had similar ideas and created private Facebook groups that do a better job than I could have even if everything on this site had worked perfectly.

More difficult simple truths

My patient and caregiver experience threads were based on what Jane and I had experienced over the course of our life together. Over the last nearly five years, I’ve recounted as much of what she experienced as a patient as well as I could. But I have never been a patient and I worried constantly about whether what I was relating was true–or merely my version of the truth. Many patients have said my words have the ring of truth to them over the years, but as treatments evolve, experiences have begun to change.

We collected infinitely more spam than patients.

In addition, we now have a new group of patient writers who articulate their experience far better than I can. They reach a broader audience today, as well–one of them has attracted more readers in the last 18 months than this website has attracted in almost five years.

Missing simple truths

Other websites regularly chronicle the stories of other patients. The patient story is being told more and more broadly and frequently in the mainstream media, as well. That piece of the NET cancer story is being far better told than it was when I started this–though there is still a distance to go.

…experiences have begun to change.

The caregiver story, though, still needs greater attention than it gets. I’ve told my story in many different venues but, like Jane’s story, I’m not sure how valid parts of it are anymore because it lies in an increasingly foggy past. While pieces of my experience remain vivid–down to the exact words and facial expressions–I worry how much of the story I’ve romanticized at this point in my own mind.

Changing simple truths

While the science has changed the patient experience, I’m not sure what the caregiver goes through emotionally has changed very much. One of our closest friends has been diagnosed recently with a life-threatening disease–not NET cancer–and I find our small circle of close friends experiencing many of the same issues I did during Jane’s last days as we try to help him deal with what he is facing–and what we are facing. It has certainly brought back many of the emotions I felt in the wake of Jane’s diagnosis–and reopened many of the wounds I wanted to think were well on their way to healing.

…I worry how much of the story I’ve romanticized…

Still, I am not sure how much more I have to bring to narrating the caregiver experience. Does another piece of writing recounting the day Jane was diagnosed really help anyone better understand what that is like than the other four pieces I’ve already written on it? Will reliving the last day of her life and committing those thoughts to paper, again, be of use to anyone?

Simple truths of healing

I don’t know. What I do know is how hard it is to heal when one is constantly exploring and probing that wound in search of understanding for myself and others. And yet, I also know caregivers need to know they are not entirely alone in what they are feeling and thinking. A fifteen minute conversation with another caregiver made a huge difference in helping me deal with some of what I was going through that I could not talk about with anyone else when Jane was in the hospital.

…science has changed the patient experience…

As a community, we still do a less than great job popularizing the science side of things. We need more and better science writers who can take the complex issues of NET cancer research and put them into laymen’s terms. It is a difficult, but very necessary job–and one I will try to continue to attempt both here and elsewhere.

Unchanged and changed simple truths

The flip side of that is there is still not enough science going on. Last week, I was at the NET-RF conference in Boston. One of the speakers pointed out that nearly every NET cancer researcher in the US–and a substantial number of European researchers–was in the room. It was not a very big crowd.

…caregivers need to know they are not entirely alone…

The good news was not all of them had hair as gray as mine. There are a number of good young researchers taking on this cancer–as well as the household names we all know and love. I am marginally less concerned than I once was about who was going to take over as the prime movers in the field aged and retired.

Difficult simple truths

And then there is the money and resources problem. Despite the influx of nearly $8 million of new money for research this year, the amount of money available  still does not amount to a rounding error on the $660 million the US government alone spends on breast cancer research. Assuming we raise roughly what we raised nationally last year in addition to the new money, we will have about $15 million to work with. But for all that seems a princely sum after years of poverty and neglect, we are far from having enough to do all we need to do.

It was not a very big crowd.

The number of NET cancer centers remains too small, as well. We are now diagnosing about 16,000 new NET cancer patients a year in the US. Researchers now believe there at least 200,000 undiagnosed patients living in this country–to go along with the 110-120,000 diagnosed patients.

Simple truths for the future

Too many of those patients do not have easy access to NET cancer specialists–and that problem is likely to continue to grow. The need for Walking with Jane, then, still exists, though perhaps not in precisely its current form.

…we are far from having enough…

These are all simple truths. But there are other simple truths that shape my reality. Some have to do with NET cancer. Others have to do with the other pieces of my life. Each of those simple truths have an influence on what happens here next.

I’ll look at those simple truths and their impact in my next post–a post I hope to write sooner than two months from now.