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

Same here. Other people notes in my file.
Makes me wonder what happened to the person that didn’t get there results?

@jeanadair123- Thank you for this question, "How are we supposed to know these things?" I think that we have learned a lot from COVID- and that is to do our own research about our own diseases. But I think that we need to speak up to our doctors.

Within the past couple of years, I found out that the nodules that come and go in my lungs are considered cancer, not just the ones that were removed. I had no idea. I had trusted them to tell me everything. I was extremely upset and let my surgeon and my pulmonologist that they needed to assume that I knew nothing and let me know what was going on. I actually was crying, feeling very betrayed. But from now on, because you asked this question and mentioned your husband's problem, I'm going to ask, "what do you see next, what are you watching for, what might come up?" I read every report and look up every word in every report including CT scans, blood work, etc.

I don't think that we can any longer rely on our doctors to fill us in on everything so we have to take over as much control as possible, short of using a scalpel!

Perhaps you can say to your doctor and your husband's doctor that you would like to be informed of all appointments, all things that he is watching, etc. let him know that you weren't happy with being kept in the dark.

Does this make sense?

It does make sense, however I believe that our oncologist is looking for cancer as is the person who reads the CT results the other issues were on the CT but not mentioned since they were not related to cancer. I had an issue before with a pet scan it showed something but no one mentioned it until they compared it with the next pet scan. It’s absolutely exhausting having to not only check my results but my husbands. Every time we have blood work I have to make sure that all the tests are included. One time the Dr forgot to include his PSA I had to call and they had me mark the box. I am very proactive but what about the people that are not?

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?

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.

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

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.

@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?

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.

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 ....