I can’t really advise you, but I can tell you about my experience. A very good friend, also a physician (although probably a couple of decades older than you), passed away of brain cancer some three or four months ago. He never told anyone of his friends—at least, not overtly—until he realized that none of the treatments would help. This was probably about three or four months before the end.
The last time I saw him (he couldn’t or wouldn’t see us when we came to visit in the last few months), was maybe a year ago. We had dinner together. We knew he was sick, and his wife had been telling us he didn’t want to tell anyone, but he talked about it a bit. He told us where the radiation treatment had been pointing, and he mentioned some of his symptoms and so, I figured it was most likely brain cancer, but I wasn’t sure.
It was very weird. Knowing but not knowing. Why didn’t he want to tell? I guess he believed he was going to beat it, and he didn’t want his fellow MD’s to know since he thought it would be bad for his practice and also bad for his credibility. I mean, what patient would want a doctor whose brain had unknown damage?
Well, you know the story. You’re probably a scientist who knows that these estimates of life expectancy can be wildly off. Each patient is a unique individual with unpredictable responses to the disease and the treatments. What do you tell people? How will they feel? How will it affect them? How will it affect them if you don’t tell, and then close to the end, you surprise them?
If I had known, would I have behaved differently? I think so. I wouldn’t have waited so long. I guess we thought we were respecting his privacy, and we didn’t know how bad it really was. We didn’t know that the results of the final surgery were negligible. We didn’t know because he didn’t want anybody to know, and we were pretty close to them. We were the only couple they went out with regularly.
I wanted to say good bye and I tried to say good bye, and I think we were close enough that we could reasonably expect to be given the chance to say good bye. We were able to support his wife, and we continue to do so. Maybe that was our job at the end.
She just sent us some photos that had been taken…. not that long ago. He looked gaunt already, but he never had all that much flesh on him, anyway. But he was smiling broadly, and looked happy, and it just was hard for me to look at those pictures. Reminding me of my feelings about him never being around again.
He was very interested in alternative medicines and authored a study on the effectiveness of red rice on reducing cholesterol (apparently, it works pretty well). So it was one of life’s ironies that he worked so hard on eating right—using all that science has thus far figured out. He lived one of the more healthy lives that an American can live and it really didn’t matter. Brain cancer got him anyway.
I don’t know if this helps, because it’s just a story about my experience of being a friend of someone who had the cancer, and you’re talking about telling your family. I would have wanted to know. I was kind of annoyed at him for not talking about it. Maybe we could have been more help to him. But I respected his desire to keep it secret.
They said he had a good death. He was very beatific for those who did see him. He practiced meditation with a master whose specialty is helping people through the last time of their lives. When his wife started to freak, he would tell her in a whisper (he couldn’t talk much by then), “Meditate! Now.” As if she was the one who was dying, not him.
Yet,after he was gone, she told us that between his moments of seeing the other side and being calm and comforting to others, he did have his moments of terror.
I support you in your desire to tell your family. If it were someone else who had the cancer and you were giving the news to the family, how would you do it?
I will tell you that the first thing I want to know when I find out (and I’ve had far too many friends tell me this in the past few years), is how long. People are reluctant to talk about this as if it could become a self-fulfilling prophecy. Maybe we don’t ask because we don’t want the person to think about it.
People often don’t know how to talk about it or what to talk about. I’m not sure if others want to,, but I know I always wanted to. A person is in a very weird time of life—having a death sentence of some unknown but shorter than usual length. How do you want it to be? Do you want to not talk about it because that would be dwelling on it? Do you not want to talk about it because people freak out? What?
I wish my friend had told me and I wish he would have let me know what he wanted. How did he want this last dance with life to go? Did he want to talk about what might be coming? Did he want just to talk about life? Was he willing to acknowledge what was happening, or did he want to ignore it?
We knew something was up because he couldn’t join us as much. He never had energy any more. It would have been a shock, but it wouldn’t have been a surprise.
I don’t think it really matters how you tell people. I think it matters what you think about it and how you want it to go. You might change your mind about that, but still, insofar as you know, express your ideas. I have to wonder if that is really what you are thinking about. What kind of relationship do you want to have from now on? Figure that out. Ask us to ask questions to help you think it through. Once you know how you want it to be, I think you won’t be troubled about how to tell them.