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Dear friends,

As most of you know, I have become very involved these last several months with support groups for carcinoid/NET cancer. Last night I received a personal message online from one of those individuals.

She has been told there is not much left they can do for her and that she should get her affairs in order. She has asked me to write about how Jane prepared for her death and--interestingly--how Jane prepared me for her eventual departure.

I started to write something last night, but then the phone rang. By the time I got back to her request and read through what I had written I knew what I had to that point was useless. I sent her a brief email saying I needed some time to think things through--which was certainly the truth. I awoke this morning with an understanding replying to her was going to require a much greater length than I had at first thought--and likely take me back to some places I need to explore, but that are going to be painful to do.

And I am a bit worried about putting my foot on a land mine that may blow up on her as well.

So I am writing this morning with two strange and, perhaps difficult requests. First, would anyone object to my posting the piece here for comments before I send it along to her? Second, if any of you would like to share how your spouse prepared for this--and prepared you for it, it might help as well.

Finally, I think when the piece is done, I'll post it on walkingwithjane because I think it may prove useful to the larger communities. If that happens, I will make sure your thoughts are kept confidential.




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Harry, my dear, in response to your first question, of course you are most welcome to post your piece here for comments before you send it to your friend. Your writing is beautiful, and I feel certain that we all would love to read whatever you have to say. I imagine we have some members who'd be willing to respond to your second request as well.

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Harry, how lovely of you to be willing to go inward as you will to help your friend. I look forward to reading what you post and I believe others will also.

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OK, folks, here it is. I'm emotional wrung out with this.

"Everybody is dying of something," Jane's mother told us after she was diagnosed in 2004 with pulmonary fibrosis. "I just know what it is I'm dying from." Jane brought that same attitude to her own death half a dozen years later.

But while both women accepted their deaths with enormous grace when they came, neither went willingly or easily. They went on their terms--and only when a fighting chance had become no chance at all. Jane and I were both convinced three days before her death that she would come home--that in February we would go to New Hampshire together and sit looking out over the lake again as we had on our honeymoon.

That is not to say we were neither of us prepared for her death when it came. We had begun to prepare for that possibility the moment her doctor said the lump in her liver was probably cancer--even before we had the final diagnosis of carcinoid/NET cancer--even before we went in for the biopsy.

The morning we got the preliminary diagnosis, Jane said she wanted one more week of pretending everything was fine. We would not talk about the cancer until the day of the biopsy. We would go back to the Lakes Region, where we had spent our too short honeymoon nearly 21 years before. We would take shorter walks--but we would take them. We would take shorter drives--but we would take them.

The cancer haunted the trip from the first day, but we tried to ignore it. The day we arrived, Jane was exhausted and had no appetite. She sent me out for dinner on my own. It was the most painful dinner of our entire married life for me. It was the foretaste of too many dinners bolted down in haste and sorrow over the 28 days she was in the hospital--and the foretaste of the hell of all the solitary dinners since.

It was the last meal I ate alone on that trip. We took turns pretending we were hungry or not hungry. We tried to buoy up each other's spirits--and in large part, we were successful.

The hotel we had honeymooned in had no room for us when I called for a reservation. But they had another, even nicer, hotel in Meredith and arranged a room for us there. It had an enormous four-poster bed that existed in two different zip codes, a small seating area, a jacuzzi, a window seat overlooking the lake and a small balcony with a similar view. There, at last, for a few hours, the cancer slid away.

Jane wasn't very hungry, but wanted some chowder, so I went down the hill to a take-out place and brought some back to the room. We sat in the window seat with our legs entwined and ate and talked and dreamed. Eventually, we climbed the ladders on either side of the bed and slept in each other's arms.

In the morning, we took a short walk around the bay. Jane loved taking pictures of landscapes and water scenes. She took her final pictures that morning. Then we recruited someone to take a picture of the two of us together. It is grainy and out of focus, but I framed it after she died and put it on a table where I can see it.

We sat on the balcony, read the papers and had a small breakfast. Then we came home. We were rested and ready for the war ahead.

I tell you this story because it was the beginning of how we prepared each other for her death. We created a final, powerful and beautiful memory that would sustain us through all the painful struggle that was ahead of us. The first step in preparing for death is to remember how much and how deeply you love each other.

The trip was painful in very many ways--but it was also a joyful celebration of who we were--of who we still are. It was more important than any bucket-list because it gave us a pool of remembered strength we could draw on when things became more difficult. And they did become much more difficult.

The morning after we came home was the day of the biopsy. I wish they gave spouses the same drugs they give the patient on days like that. Jane said they could have told her she would be dead within the week and it would not have bothered her. She said she finally understood why people became drug addicts.

In the days after the biopsy we spent lots of time talking. We spent part of that time remembering the past, but far more of it talking about the future. We would neither of us give up hope until there was no hope: That was our pact. And when there was no hope, it was clear I was to let her go.

I did not have to infer that from our conversations It was what she said. It is supremely important that you have this conversation with your loved ones, regardless of whether you are sick or not. You need to know what they want--and they need to know what you want, in terms of what measures to take when you are no longer in a position to make those decisions.

Your spouse--or someone else you trust--needs to have a signed medical proxy. If you want a Do Not Resuscitate Order, you need to sign that as well. But you need to know that the language in those, while legally accurate, is medically vague. Your healthcare proxy needs to know precisely what lines you are willing to cross and which ones you are not.

Jane and I thought the language was pretty clear and went into the hospital with that understanding. When she had her first carcinoid crisis, I discovered just how medically vague the language could be. Fortunately, I had lots of conversations to fall back on--including the words "fighting chance" that we had often used to describe our bottom line.

Those conversations are not easy to have. They mean you are both admitting and accepting the idea of death. The first time I brought it up, Jane accused me of giving up and wanting her dead. I didn't, but talking about even the potential of death was a place she was not ready to go yet. But comfortable or not, those are conversations everyone needs to have.

The other thing that needs doing--and a thing we both neglected--is to make sure all the financial affairs are in order. Everyone should have a will. Probate is a major task without one, even for a married couple.

Everyone is familiar with the four emotional stages of dealing with death. They don't seem to work very well when applied to grief, but they do seem to apply to those facing a fatal illness, whether their own or of someone they care about. We both went through denial, anger, bargaining and acceptance. Of the four, I think the most difficult for couples--or at least for us--was anger. We tend to take our anger out on those who care about us because they are less likely to fight back.

Jane's anger was sometimes explosive. I think sometimes she wanted me to explode right back. There were times I probably should have. But I couldn't because I was too aware of where the anger was coming from--and that made her even angrier. You are going to get angry. Your spouse is going to get angry. It is important--in that anger--to remember you really do love each other. Building that final honeymoon reservoir buttressed our reserves--but it was still a near run thing.

Jane asked me once why I never seemed to get angry--either with her or the cancer she was fighting. I told her I was enormously angry about it, but I could not afford to let it control me ben for an instant. I needed to keep my mind clear because I could never know when I'd have to make a decision that would require all the knowledge and logic I had.

"When we've killed this thing, I'll be able to afford to feel again. Until then, for both our sakes, I have to stay lucid." That sounds cold and heartless, but Jane understood it for the deep and abiding love it demonstrated. We both knew the cost of controlling our emotions to that degree.

She also wanted to know how I put up with the constant mood swings she was throwing at me. "Why don't you ever get angry at the things I say and do to you?"

"I know that anger is not entirely you," I told her. "Most of the time it's the pain of the cancer talking. Sometimes, it's that I've screwed up and deserve the anger. Whatever the case, me getting angry with you isn't going to help anything."

Of course this makes me look like a saint--and I was anything but. I was insanely angry a great deal of the time. I took it out on rotting tree limbs and recalcitrant rocks. I didn't mow the lawn so much as I systematically attacked it. As Jane's body weakened, she had fewer and fewer such outlets--and her anger had to go somewhere. I was willing to become that target.

Through it all, we talked and listened constantly and consistently. I cannot tell you what it is to watch the person you most love slowly waste away, becoming more fragile with every passing day. Mark Twain says that efforts to accurately describe grief would bankrupt all the languages of the world. Trying to describe Jane's slide into death would bankrupt all the languages in the universe for me.

We had one important conversation the day before she went into the hospital. She told me that I had saved her life--that before we met she was simply passing through a joyless life to a joyless death; she told me that she knew I believed I had done a lot of things wrong in our life together, but that this was not true--and that she forgave me for all the things I thought I had done wrong and all the things I would think I had done wrong in the days ahead; she told me that she did not expect to die from this operation--that she fully intended to live--but that if she did, she did not want me to stop living--that she wanted me to keep moving forward and doing good in the world; that she did not want me to mourn her longer than necessary; that she wanted me to fall in love again; that she wanted me to find happiness again.

My wife had a huge heart. I cannot tell you precisely how she came to terms with her death. It was the one thing we never really discussed. She knew it was coming--though not when or where or how. She spent some of that final fall going through her books and papers--not so much organizing them as reading them and looking at them and realizing the huge impact she had had on so many lives. She was a teacher, and a great one.

But we all touch many lives and change the lives of all we touch. Some we change for the better if we are careful. Some we change for the worse, though rarely intentionally. We all of us do the best that we can with the time and wisdom and knowledge that we have. I know Jane thought a lot that fall about the lives she had touched and changed and made better. She found in her heart the forgiveness she needed for her failures. It was that understanding of the power of forgiveness she tried to leave me with. It was her final gift.

Twenty-six hours before she died she came out of her coma one last time. I told her there was nothing left for us to try--that the balance had finally swung from fighting chance to no chance--and that in the morning they would disconnect the last of the tubes that were keeping her body going.

"You're going home to the garden," I told her. She closed her eyes. I kissed her forehead, brushed her lips with mine. "Good night, my warrior princess," I whispered. I knew her soul was gone, then. It was simply a matter of waiting for her body to die and let the last of her go.

I started out here to try to help those who are dying--not just of this cancer, but of all the hopeless diseases we still cannot cure or heal--come to terms with death--and help them bring their loved ones to terms with it as well. I cannot say whether I have succeeded in that or in bringing you solace.

But it is the best I can give you at this moment in time.

I do not fear death or dread it for myself. It is an inconvenient fact that these bodies wear out. Jane and I saw these bodies as vessels for our souls to travel in this earth upon. I feel her soul about me sometimes, but I miss the body that she animated, the sound of her voice, and the touch of her breath when we turned to each other in the night. Death has stolen those things from me--and that loss has changed me in ways neither of us saw coming.

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I would no presume to suggest any changes to this beautiful piece of writing. I wish Pete and I had been able to talk about our deaths, as I think it would help me now. I broached the subject a number of times (before he had the stroke that ultimately killed him) but Pete couldn't bear to discuss my death and so we didn't talk about his either. He did write this poem though and it does give me some comfort.

I have not gone away (Pete C.)

When I am dead my dearest

Do not give way to grief

But put aside your misery

And let your heart be glad.

Remember how we watched the moon

And saw the sun in beauty rise.

My ashes you will scatter

Upon our mother sea

Then when you hear the breakers crash

Or mark the seagull’s call

You’ll truly know that I am there

Within the heart and life of all.

So when again you feel the breeze

Caress your cheek or stir your hair

Be sure, its gentle touch is mine

And when you hear the roaring gale

Or crack of thunder on the sea

You’ll know that I am with you still—

I have not gone away.

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Jan, I love the poem.

“…how Jane prepared for her death and--interestingly--how Jane prepared me for her eventual departure.”

Wow! “A land mine indeed!”

I call our journey “The Slow Disappearance of a Beautiful Soul” because that is where our journey took us.

Jim and I had a love that was solid. We loved life and took every opportunity to enjoy it. We never seemed to have enough money to do all the traveling that others talked about but that did not bother us. We planned on doing our traveling when we both retired. We never allowed a day to go by without morning coffee and our talks. At the end of the day we took time to be with each other.

Our experience from the first time Jim was diagnosed with Alzheimer’s sent us to learning as much as we could about the disease. At first it was all about Jim and what was happening to him. Our journey took about seven years. In the beginning, the visits to multiple doctors were kept between us. We decided to get all paper work in order while both of us were still clear in our minds as to what our wishes were. We both wanted to remain home if at all possible. We then discussed with the children and siblings what we had decided was going to be our end-of-life wishes and then tucked the papers away in a safe place for later. It was only when Jim reached the middle stages of the disease did we actually start talking to others about what was going on with Jim.

Both of us were very open about what was happening and Jim always said to me, “You know I love you and no matter what happens I always love you.” This I still carry with me. We had a love that many have and it was easy for us to tell each other that we love you.

I don’t know if Jim ever did anything to actually “prepare” for his death because he was the kind of person that lived each day as it came around. He was always the same day in and day out. People who knew him said that Jim never changed ~ he was a gentle human being. His disposition never changed even though we were seeing big changes. Saying this does not mean that he did not have his good and not-so-good days. He had his faults and sometimes his stubbornness lead us to some head butting.

Because Alzheimer’s disease is “mind changing” it was necessary for me to learn as much as I could so I could better understand what was going on with Jim. I, along with a friend of mine, started an Alzheimer’s Support Group for Caregivers here in our community since none of us could be away from our spouses for too long. Jim knew I was going to the meetings once a month and early on he would ask me about what we talked about that day. During that time a friend would come to visit Jim so I could be gone for those two hours. I went to these meetings for over two years until I had to stop to spend more time with Jim. I learned how to care for myself and how to better care for Jim during this time. As a caregiver I was always tired and worn out even though I thought I was taking care of myself. I crashed and needed respite care for Jim once before he entered his final battle of the disease.

Jim did not want to enter into any “experimental” groups. He told me when he did not want to have any more tests. Visits with his neurologist and continued MRIs stopped when we were in the later stages of the disease. Doctors supported us knowing that it sometimes is harder on the patient to continue with all these tests especially when they have no idea what is going on with them.

We talked openly about the time when I might need help with his care. He always used to say to me that it was okay if I needed to have someone else help me out as long as she was a pretty blond. Funny thing ~ when it was time for Hospice and hiring an extra nurse to assist me with Jim both his HOV nurse and his other nurse were blonds! Jim so looked forward to their visits!

We decided together when it would be time to stop all the neurological testing and all the other doctor visits that came with this disease.

We decided together when it was time to take pictures down of the kids and grandkids because he no longer knew who they were. It was my job to tell people that Jim may seem like he knew who they were but in reality he had no idea who anyone was ~ he recognized them but did not know if they were child, relative, or friend. I consider myself very fortunate because Jim seemed to know who I was right up to his last hours. I think it was because I was a constant in his life and even when his eyesight went he knew my voice and knew when I was in a room with him.

During the hospice days we took advantage of all levels of care. We chose to use the entire Hospice Team to help us through the end-of-life journey. One of the memorable acts during those last weeks was having a representative from the VA come to visit and lead a short ceremony recognizing Jim’s service as a pilot in the army aircorps. Jim seemed to be very alert during that time.

Another thing we did was to invite his buddies from the Senior Softball League to stop in for short visits. Jim didn’t know names but he knew faces and he was still able to laugh.

Our last hours together were filled with quiet. Jim could no longer talk but he had a grip that he never lost. When he lost his eyesight he would hold on to my hand and place it to his chest. I thought it was to his heart telling me that he loved me and that I would be all right. The hardest part of my entire journey was to tell Jim that it was all right for him to go. It really wasn’t but he needed to hear this.

My comfort to this day is that Jim did not really have pain. His brain just seized to function and little by little his physical body was no longer able to remain in this world.


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Oh, Anne, that is one of the most beautiful and heartfelt pieces of prose I have ever read. I'm weeping as I write. Your Jim was so so lucky to have such a loving wife. And behind those words hides so much pain and so many many hours of hard living. Thank you for sharing it with us.

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Harry, this is an amazing post, accounting of those final times. Thank you for allowing us into that sacred space. I wonder how it was for you to write it since you expressed earlier how this might be so difficult as I can only imagine it was.

Anne, your story of yours and Jim's final times together is so touching. Because of the Alzheimer's it reminds me in many ways about my own journey with Bill, Jim was blessed to have you in his life and he knew it and I know you feel blessed to have him.

Jan, The poem you shared is so very touching. I am so sorry you did not have the time to talk about death and prepare as much as anyone can prepare. What I know for sure is the love you two shared was a bridge that Pete was able to use on his new journey.

Thank you all for sharing so openly. These are so inspiring. Also makes me ponder those days with Bill, of course.

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Dear Mary, Anne, and Jan

I was fine most of the time I was writing it--the gift of being focussed on the words--though there were moments I nearly broke down. But when i finished and went back through it, I cried like a baby for about ten minutes and have been weepy ever since. I am afraid I tore through a lot of scar tissue today. I have other things I need to do, but they are not getting done.

Anne, I know what writing that piece cost you. Bless you. It is the Alzheimer's story for far too many.

Jan, thank you for sharing the poem. It is beautiful.

While I am going to send this as a reply to her note shortly, I'm not up for the challenge of layout and design tonight for the web page. That requires going in after the best quotes and figuring out where the links go--tasks way beyond my current emotional strength.

Thanks for letting me share this here and risk ripping open some of our collective wounds all over again. It's been a long time since I felt this way. But as I wrote to someone earlier, this is what I signed on for the day Jane began to falter. If even one person is helped by this, it was worth the price.



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You will find the right words to use on the web page, Harry. I so understand how emotional this is for you. We all become so vulnerable when we look into our grief journeys but that vulnerability is what brings us to healing. One of the things I so like about this forum is that we can and do share our vulnerable side to those here.

I agree with you when you say that if even one person is helped by our words then it is indeed worth it. I have witnessed transformation here that I have not seen anywhere else. Even though we are unique in our journeys we are one in our strength and courage. I believe that we gain this strength and courage from others who have witnessed a tragedy such as ours.


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Harry, I know that tearing through lots of scar tissue is ultimately healing but the ripping itself is so painful. I hope you can rest some today.

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Oh my. I have read these wonderful, heartfelt accounts, and I find that my tears are too many, and the pain is too much to write here about those last months with Doug. Doug made it for three more years, even after they told us that he had only few months longer to live. We made the entire journey together and I feel blessed that I was with Doug as he made transition.

Harry, you have great courage to walk through those days again.

Anne, your story, in your own gentle and kind words, is a beautiful one of you and Jim. Thank you.

I volunteer at the Holter today. I am looking forward to being with art and people.

Reading of these beautiful but painful journeys has both opened my heart and filled my eyes with tears. We have a beautiful Tribe here. Thank you for opening your hearts and sharing these sacred moments with us.



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What a very difficult topic to address and write about! While many here knew ahead of time and had time to talk over and prepare (as well as anyone can), I was not given that chance. How I wish I had been, difficult as it might have been.

However, George and I did have talks about "what if"...in looking back I can see that neither of us had a clue just what it would really be like to be left alone without the other.

My doctor wanted me to fill out papers "in case"...I knew what I wanted but did not know how to achieve that, so she helped me in filling out the forms and explained them to me. I also let my son know my wishes as he'd be the one to handle those things when the time came. I don't want my kids to feel guilty wondering if they made the right choice, it's easier if they can know they're carrying out YOUR wishes. And as it's been said many times before, there isn't a right way or wrong way, their is only YOUR way! :)

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I'm impressed that you've given this so much thought - both before and after Jane's death. and I continue to be impressed at how you are working to spread awareness of her disease.

I can't even bring myself to think or read about lung cancer - let alone help anyone else who has it.

I think we deal with death in different ways - all depending on who we are. In our case, neither of us really expected my husband to die. He certainly had no intention of dying, and was prepared to fight this thing and win. I realize we lived in denial, but there were a number of different circumstances that led to this state of mind.

Maybe if we'd both accepted it, he wouldn't have been so frightened just before he died and I wouldn't be living with this hospital trauma that I can't seem to get rid of.

On the other hand - maybe that's how we were able to survive that awful year and somehow find some hope and joy during that time.

I agree with Kay - there is no right or wrong way. Life (and death) just happen - and you deal with it as best you can.


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Melina, I think we all do the best we can and sometimes things just do not go the way we wished. Bill and I did a lot of denial also...mostly in terms of how long he had to live but it still got in the way. If you ever want to talk about the hospital trauma....we are here for you. It does not matter if you talked about it before. Sometimes we need to tell our stories many times.

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Dear friends,

I've added some things to my original based on what some of you have said here. I'm letting two people who do not have an emotional investment in the piece read it this weekend to make sure in my emotional state I have not ceased making sense. I've heard nothing from either since Friday, which makes me nervous.

I sent it to the young woman in question as well. She is having trouble getting through it, she says. She reads a paragraph or two and cries, reads another and cries some more. She assures me it is valuable to her, but I am not sure whether it is truly helping her situation very much.

I once wrote a poem that a friend told me was very good--but that she never wanted to see again because it had made the pain in it too real. Part of me is afraid I have done that here. I cannot read it myself without feeling new cracks in my heart that take me back almost to the moment my life shattered. I did the rough layout today for the page but could only do so by keeping my mind at a remove--and even then, it hurt badly enough that I have set other things aside that need doing so I can distract myself.

My first rule is, "Do no harm." I worry with this that, though my intentions are good, I will do more harm than good. I know three of you have far more training in psychology than I do. So I ask, "Is this something I should share with an audience of those facing their own deaths and their caregivers? Does it provide sufficient light to make the potential pain worthwhile?" It is one thing to share this here, where we all already know this deep anguish. It may be another matter to share it elsewhere.



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I happen to be of the thought that it is good to process grief (even if we are the one we are grieving over) and you cannot do so without some tears and pain, that is part of the processing and thus the healing. Avoidance does not help us in the end.

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I really don’t see anything in your beautiful piece that would be harmful to anyone, Harry. You’re not forcing anyone to read this, or to see things from Jane’s or your own point of view. This young woman asked you to write about how you and Jane prepared each other for Jane’s departure. Even though the details of your story may be difficult for her to read, and even though she’s having trouble getting through it, keep in mind that she is free to read as much (or as little) as she can tolerate. What is more, it’s been my experience that human beings are pretty well defended ~ we hear what we want to hear and keep out the rest. That is how each of us just gets through the day. This is your young friend’s life, and her dying too, and she will do it the way that she needs to do it. For all you know, your piece may prove to be quite helpful to her and to her loved ones. Still, she will face her dying in her own way, as she is ready to do so, and I think this is true for anyone else with whom you share this piece. Your writing may seem harsh and raw to you because you write so honestly from your own truth and your own experience, and doing so has called forth some difficult and painful memories ~ but not everyone reading your words will be experiencing them the same way that you are. If reading your piece “makes the pain too real” for some, they can choose not to read all of it, or not to read it a second time ~ just as your other friend chose to do with your poem.

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Harry, I agree totally with Marty. One of the things that helped me the most when Bill was dying or after he died was honest stories of other people's process. Again, people can choose what to read and what not to read. I think this has the potential of helping rather than harming.

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Thanks. Basically, I'm just being exceedingly cautious, I guess. This is an arrow that once fired is not easily called back.


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  • 3 months later...

Dear Elly,

Thank you for your kind words and thoughts. The reaction to this piece in the NET cancer community has been huge. More than 600 people have read it in the last three months--40 in the last week. In terms purely of helping people, it has been enormously successful and entirely worth what it took me to write it and convince myself to publish.



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