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Ashamed: I think about (and plan for) dying. Do you?
Lung Cancer | Last Active: Aug 5 8:32am | Replies (213)Comment receiving replies
We don’t have any children so I paid to go through the neptune society knowing if I died first it would be easier for my husband. We both have had cancer 3 times, my husband hardly ever mentions his except some pains from the radiation. I however think of it how can you not? They missed two of my cancers, I went to 4 doctors before one would use a Speculum if I hadn’t have been so persistent I would have been dead by now, they said because I only had 1% chance of recurrence they didn’t use one. Of course one worries every time you have a scan and you have to wait for the results. Recently it came to my attention that our oncologist only reads the CT report and doesn’t look at the actual scan. My husband had an appointment with his carotid artery surgeon he actually looked at the scan and said my husband has had an Aneurysm they are watching and a little Pneumonia. We had no idea he has him scheduled to see a pulmonologist. How are we supposed to know these things. I always read our reports but I have such a lack of trust in doctors so I have to be so proactive.
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@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?
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I distrust doctors as well. They are too busy to take care of their patients. You have to be proactive and read the literature to ask questions. Mayo is the best (don't you ever try Ironwood, please), but still you have to read the Clinical Notes and Summary because sometimes you find descriptions that are not accurate.