Ashamed: I think about (and plan for) dying. Do you?

Good morning Dede- Thank you for sharing your story. I am a cheerleader for being in charge as much as possible. Education is power. It's essential to know what is going on and understand it. It lessens anxiety and allows for being a better patient.

There's nothing like a surprise. Like you, my surgeon at MGH found three tumors instead of 2 in my left upper lobe and had to switch from using his robotic arms to open chest surgery. This was 10 years after my first one (but a different kind).

The medical world can be very confusing and scary. Taking one step at a time, I think, gives time to grasp and understand more. It lessens the chance of misunderstanding. You have a great way of expressing yourself after such a whirlwind experience yourself!

Again, thank you for telling your story. Survivors are angles of hope! Don't you think?

Hello Merry....at our age death is always on the horizon and when I got the diagnosis May 2016 I stuck to the one day at a time way of thinking but decided to take charge of those things I could in my life....legacies, finances, wills , staying physically active etc and it made me feel maybe I could beat the beast. I had surgery, half my left lung removed, found more cancer when closing me up which put me into stage IV. Moffitt then sent my tissue samples to the pathology specialist Foundation One medicine in Cambridge and discovered my tumors had the rare Exon 14 gene mutation and I qualified for Xalkori, a targeted therapy (2 pills a day) which I am still on. I have some other health issues...(who doesn't approaching 80?) but plunge on.....that's my story. I have to say staying physically active (daily zumba) and a lovely husband are part of my story. I think they keep the grim reaper at bay. Hope this is helpful information. Dede

Welcome to Mayo Clinic Connect. Wow, you are incredible!! I'm 75 and have had cancer since 1977 and I need to touch you- it's supposed to be lucky! I have also done all of the "necessary preparations" to make it easier for my family should I die before they do. I'm so damn picky!

Would you feel comfortable telling a bit more about your journey and how you have been able to not be consumed with dying?

I have had lung cancer for 5 1/2 years, stable so far, approaching my 9th decade and while I don't think about dying all the time it certainly is a reality to face and I have written my obituary (sans dates), kept my will up to date, told my family I want to be cremated and where to be buried, have a party vs. mournful church service, slowly sorted through my junk and good stuff and given it all away so when the time comes it won't be such a hassle for family. I have set up my estate in trusts so asset management shouldn't be difficult. I am in charge of that part of my life and it makes me happy.

PS. I am pretty fit for the most part. Sub Zumba instructor ....

You know... I remember reading a book of his and will find it again! Although I have several things wrong with me, I DO have that same mindset that you refer to. My family (11 kids) know that sometimes
I have fallen, due to clumsiness, but that I consider myself healthy.
So I plan to live to be 110. I must confess though that I tend to manipulate my husband who is sick with pulmonary fibrosis, diabetes, and lots of other things. I tell him I cannot live without him, just so he will get off the couch and walk with me. I say this to him in a loving, smiling way, but I'm being serious because he can be lazy or want to spend all day watching TV. Hope my comments are supporting your own, Erika.

@mamawnebel, All of your thoughts and fears are normal and expected when we think of our own death. It is one topic that surely is tough. But, how can we not think about it?

Thanatophobia is commonly known as the fear of death. It can be a fear of death or a fear of the dying process. It's natural for us to worry about their own health as they age, or when faced with serious illness.

When I first learned that I had lung cancer, back in the late "90s, I became consumed with thoughts of my dying, asking questions much like you are presenting here.

There are many mechanisms to help a person who suffers from a lack of oxygen at the end of their lives. The most commonly prescribed drugs include acetaminophen, haloperidol, lorazepam, morphine, and prochlorperazine, and atropine. My suggestion is to have a heart-to-heart chat with your doctor about your fears and find out what is done for any suffering at the end of life. And make sure that your end-of-life directives are very clear.to people who will be in charge of your care.

I have a DNR but this doesn't mean that I want to struggle or suffer. It just means not prolonging my life if there is no hope.

One of my biggest fears is after I'm buried and if there remain any sensations that I might feel. I squirm at the thought but it is very scary to me.

Do you have health directives?

I think about all those things even though I was just diagnosed with COPD in July and knowing the way I am, I'm sure I'll think about them until the day I die. Preparing for our death and funeral and all that goes with it is a one time thing in everyone's life and I can't imagine how anyone wouldn't think about those things. Some may not worry about them, but they do think about them. The main thing I worry about is HOW will I die. I'm not afraid of death because I'm a Christian and I look forward to going to Heaven. My fear is will I suffocate and suffer for hours or even days struggling to breath or be in so much pain that it will be almost unbearable, but mostly slowly suffocating. So I don't think what you're saying is bizarre at all. I would think it's perfectly normal. Thinking about my parents dying was so difficult but in the end everything worked out as it should. They both passed away so peacefully and our last day together was so beautiful and peaceful. Try and find your peaceful place, do as much as you can to prepare for as much as you can, and if you are a person of faith, let God take care of things.

Just a friendly reminder to bring this discussion back on topic about end of life planning. Such as important topic.

Finding a doctor who you feel you can ask questions with, one who doesn’t look at their watch during your visit, takes time for you and treats you as an individual patient. If you don’t have this then change your doctor. Also you need a doctor who will give you the tests that you feel you need. I ask for these and normally get them. I used to get an pelvic mri at Stanford with gel my gynecologist oncologist has not mentioned this so when I go on the 18th this will be one of my questions. I have excellent insurance so there is no reason not to get it.

Good morning Jean- The people who aren't proactive might not get the care they should get. In this day and age, everyone should be self-advocating! And if they can't they need to find someone who will. I don't think that there is a way around this anymore.

Radiologists and technicians are having huge demands put on them by doctors, especially in teaching hospitals. Mistakes will occur, but that doesn't mean that we should be left on the side of the road. We need to stand up and speak up so that we understand everything that affects our particular situation.

I can imagine that it's exhausting to keep track of everything for yourself and your husband. But we are way beyond not wanting to bother the doctor, way beyond trusting everyone. Doctors are human and will make mistakes. There are just too many of us and it's up to us to make sure that they pay attention.

We all need to ask questions and read everything that we can. It's just that type of world now.

What do you think would be the first step to starting this process of the patient-doctor relationship?