DanielleP

Thank YOU, my friend!
UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences?
I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. 
Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha!
And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days!
I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together!
💚💚💚

Thank YOU, my friend!
UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences?
I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. 
Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha!
And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days!
I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together!
💚💚💚

Danielle,
As always you have eloquently put into words how I feel every freaking day!  Thank you!  
My to-do list is sometimes the most satisfactory thing I have during my day (especially since I gave up "bad carbs" at the beginning of the year! lol).  My to-do list is the only thing I have control over most days.  And although, 4 years into this, the to-do list has less to do with cancer related stuff (right now anyway), I feel it is still my way to have some control over the crazy life of a lung cancer caregiver/advocate.  
I have an aunt that always tells me to get some sleep or, take care of myself, when her idea of taking care of herself is heavy drinking.  She always says she is there if I need any help, but it's only help that she wants to give when it is convenient for her.  Her way of helping is to text me late at night (when she's inebriated) to tell me thinks like "I think your dad needs to go to a rest home so your mom can focus on herself" or "Your parents need to sell their house to get something smaller", and the list goes on and on and on and on....  On one hand, I sometimes feel closed off because our family and support system is tiny (2 aunts is all), but on the other hand, I only have 2 other people telling me to get some sleep.  No matter what the situation, managing the "do gooders" in our life is a full-time job in and of itself!
Your support for your mom and dad is so similar to mine that it is scary.  We are 2 peas in a pod and I am thankful for you every day.  
Take care, my friend, (or don't, do what you need to!)

Beautifully said (as always!), my friend. Amen. Absolutely. Unfortunately, for my part, I never have the time or energy to lay out the proofs or disputes as thoroughly as I wish to or should. The pivot was, at the end of the day, an almost selfish solution, because it only leads to determining whether the person can be of use for my purposes or my mom's purposes, but it does not solve the root issue, which is absolutely the more important problem. 

I like your pivot approach. It does a fine job of sorting the wheat from the chaff.  What concerns me most however is how prevalent outlandish miracle cure myths have become in our society.  The result is some believe the fairy tale and invest in the cure and "suffer" both economically and medically.  The time for 1870s miracle elixir is done.  Lung cancer is bad enough but chasing hope in a high priced bottle of nonsense is just plain stupid.  I listened to an intelligent man tell me that intravenous Vitamin C was a sure-fire cancer cure.  When asked for evidence, he related that Linus Pauling, Nobel laureate Chemist, killed cancer cells with high concentrations of Vitamin C in a petri dish. Ok, sure, put high enough concentrations of almost any reagent in a petri dish and it will kill cells.  Pauling did believe that high concentrations of Vitamin C, taken intravenously, cured cancer but many subsequent science based studies have failed to ratify Pauling's belief.  Yet this myth lives on and well intended and not so well intended people propagate it!
We lung cancer survivors already face the self-induced stigma that tamps down research funds for science based treatment methods.  The solution is not to embrace non-science based methods.  We need to go to war against the miracle cure.  Purveyors of these cures need to be publicly ridiculed. 
 
 
  

I am the cared for, I want to say thank you to all the caregivers.  My husband and caregiver said the saddest and sweetest thing.  “We still have quiet intimacy, a touch, a smile, a kiss.”  Embrass those moments.

Tom-
The words you have written here are beautiful!! Thank you for taking the time to write it and to share it!
 
Ro

And, what of hope?  What is the essence of it?
Words inspire me.  They lift my spirit and excite my soul.
Especially two simple words: faith and hope.
These words have a natural order. Indeed one must have faith before hope is possible.
So the question becomes, what is faith?
Faith is belief, conviction, an unshakable confidence, that something unseen, untouchable, or unknowable exists.
I have faith my chemotherapy treatments will arrest my cancer.  I cannot see them working, nor can I touch the chemicals.  I cannot know they are working but my belief is strong, resolute and unshakable. I have faith.
And because I have faith, hope is possible.  What is the essence of hope?
Hope is an expectation of a good outcome.  For those with lung cancer, we hope against hope. We cling to slim odds; we rejoice at possibility despite monumental probability. Indeed, we who suffer lung cancer are hopers.  And, "hope is a good thing"; "hope is maybe the best of things."
Hope gives us purpose. It stiffens resolve. It creates strength to endure.  Hope sustains.  Without doubt, hope lifts my spirit and excites my soul.
"Out of the night that covers me, 
Black as the pit from pole to pole,
I thank whatever gods may be,
For my unconquerable soul."
I believe I shall live to enjoy the simple things, the little things, the important things. My faith in life is unshakable. I hope to live each day to find little pieces of joy. When found I shall rejoice. For the magic of life is joy. But the essence of life is faith and hope.
Stay the course.

Thank you so much, Tom! Means quite a lot coming from you. Thank you for all of your wisdom that you share here and elsewhere with the community!

Wisdom.  Indeed, uncommon common sense but you've synthesized both the caregiver problem and solution, elegantly. Well done Danielle, again!
No one will ever understand ground truth till the ground is walked. Then truth becomes apparent, experience is invaluable, and real empathy is possible.  That is why this place is so important.  Survivors and caregivers know what lies ahead and can communicate ground truth.
Stay the course.
Tom

Steff,
Oh, my friend! Thank you for your kind words. Thank you so much for commenting and venting! I feel you. I love how you say "melt." That's such a perfect word. And I feel the exact same way when people tell me to take care of myself. I know they mean well, and I know it's healthy, but...you know. You get it! Please reach out to me ANY time. The beauty of us understanding what each other are going through is that we can BE there for each other! Sending you SO much love, girlfriend!!!

Thank you, Danielle.
Thank you for putting so eloquently everything that I feel and everything that I don't know how to say (or don't want to say). I personally thrive with schedules and routines. Anything out of the ordinary puts me in a fury and I want to melt. My mom's cancer feeds my fury daily!  I typically want to punch people when they tell me to make sure I am taking care of myself. Your statement "so much of what we really want for self-care is actually just a return to routine" hits the nail directly on its head.  There is no better way to describe the joyous and often tumultuous job of care giving. Thank you, thank you. I am crying because someone else "gets it" and has so perfectly written what so many of us feel. 

Danielle,
Oh my, there is so much to digest in part 1 but that said, I yearn for parts 2 and 3 of your Three Rs.  
Lung cancer: the surprise that keeps on surprising.  I was the patient.  I had it easy compared to my wife's continuous reset of her life while tending to me.  This is wisdom for the ages.
Well said, no extremely well said!
Stay the course.
Tom

Bless the caregivers!  They make my life so much easier, and it makes it easier to fight the cancer.

Absolutely. I think my husband and I are competing right now. I'm trying not to engage, but it's hard. 
 
Also, we got back from vacation 9 days ago. Two suitcases haven't been moved from the front door yet. Between work, school, childcare, parent care, doctors appointments, it just hasn't gotten done. This weekend, I hope!