Thank you for writing about this Daniel, and I’m looking forward to reading the article you mention. I so rarely hear it spoken about in clinical settings, though me and my metastatic breast cancer friends talk about it a lot. It’s a particular uncertainty that affects so much at a profound level. How much do I share with my (young adult) children - am I asking them to worry before they need? But if I am going to die sooner I’d like to have the conversations. Do I stop working? Though I love my job the medication is leaving me very tired and in more pain 5.5 years in and it’s becoming harder. But if I’m going to live longer, how do I afford that if I’ve stopped working, and why give up something I love if I had time to do it? Do I put the fear aside for a while, as I’m still on my first line of treatment, and just live a ‘normal’ life given not so much has dramatically changed in physical terms, though mentally I feel like a different person and that that ‘normal’ life is no longer readily available to me. It’s a strange way of living - between the two kingdoms of life and death as Susan Sontag and Suleika Jaouad have called it.
Yes, all so true. I love @Suleika Jaouad’s approach and writing things out or journaling is one way I think we can all cope with uncertainty. Thanks for sharing.
This is so me. And I read the attached article. I’ve been living with cancer initially terminal in 2010. And metastatic 2020. Feeling amazing and hiking every day, or most days, living life like there’s no tomorrow. Sadly, my pension also is living like there’s no tomorrow.
Thank you for this thoughtful article. It's so true- people like my husband, who is almost nine years into a brain cancer diagnosis after his oncologist told him he would only have two years to live. He and I often talk about how unfair such comments are, even though they may come from well-intentioned doctors. My husband is a happy "stay-at-home-dad" now, but this transition has been really hard to navigate, and I think there's an even bigger gap when someone is fairly young; it's hard to find others who can understand and relate.
I'm struck by the parallels between the challenges you describe in oncology care, and the gaps that exist in mental health care. As you so well described, there is a gap in how the world sees patients with uncommon trajectories. The assumption is that patients either survive and "go back to normal" or they die. It's either treatable or it's not, with no in between.
Therapy training also tends to assume that "remission" is the goal. That we identify a diagnosis, treat it, and then distress is lifted. I would go as far to say that most of the evidence-based treatment approaches follow this frame. Those of us who are versed in the unique emotional challenges of cancer, and how to adapt therapeutic treatment appropriately, are too few and far between. Patients deserve relief from the emotional suffering that comes from prolonged uncertainty and loss. Psycho-oncology, like all oncology, has a long way to go.
Daniel, thank you for this thoughtful reflection. As an end-of-life doula, I’ve had the privilege of sitting with many people as they navigate serious illness and the uncertainty that comes with it.
One of the things I’ve witnessed is how emotionally destabilizing it can be when a prognosis is framed in ways that leave people feeling they must either “fight” or “give up,” with very little room in between. When death is not allowed to be spoken about as a possibility, patients can feel isolated in their own thoughts and fears.
At the same time, I’ve also seen something beautiful happen when people are able to acknowledge that their life may be limited. Many use that awareness to have long-delayed conversations, mend relationships, take meaningful trips, or simply say what needs to be said. If the timeline changes and they live longer than expected, those things are rarely regretted.
None of us truly knows our expiration date. In that sense, the clarity people sometimes experience after a serious diagnosis is something the rest of us might learn from — to attend to what matters sooner rather than later.
I appreciate your point about the need for mental health support that understands the particular uncertainty of serious illness. There is a great need for spaces where patients can explore both hope and the possibility of death without feeling that one cancels out the other.
Thank you for your thoughtful comments. “to attend to what matters sooner rather than later” is how we should all think I suppose but once your health is in jeopardy it becomes more urgent for sure.
I first encountered this phenomenon when doing ethnographic studies with HIV patients. One of them had done exactly what you said--spent all his money, living his last days large, only to suddenly be the beneficiary of the newly-approved antiretroviral drugs. He was physically doing quite well when he expected to be dead, but was now dependent on government services for basic needs. His emotions were clear: a strange combination of relief and resentment.
People undergoing treatment for cancer these days, like my husband with Stage IV lung cancer, must live with seasons laced with daily uncertainties. It's a whole new way to live, and not always pleasant.
It’s so hard … my mother was given three weeks to live in July 2020. She lasted another 9 months and passed in Mar 2021 after months of home hospice waiting to die. Didn’t eat for those months due to the pain. Not sure how she made it but it was grueling. For us all.
Many of us would strive to be outliers, trading the dread of treatment failure with the dread of each scan potentially showing progression. Either way, there is anxiety; one simply becomes a long dance, a complex tango. I would gratefully take the dance and partner up with a good counselor, hoping the music plays long.
Thank you, Daniel. I passed this on to my Mum and she said it helped to explain how she feels. Bewildered is the word she used. Perhaps we need to change the way we think and speak about prognoses. They are rarely correct and I always worry about the nocebo effect.
Honestly, I’ve gotten further and further away from any type of “numbers” talk over the years. I try to frame big picture and when I see things are happening that changes that need, then we begin to address it. It’s all individualized to a patients goals as well.
Thank you, Daniel. The mental health support - I’m lucky to have an incredible therapist, she’s the real deal. I wish more could access this kind of therapy.
Such a useful and timely piece Daniel. I interviewed an oncologist the other week who told me of S4 patients living way beyond what was initially thought. He told me one gave up work only to 'still be here' and wishing she hadn't. It's psychologically very tough I think.
I think it's quite a existential question really, because ultimately, none of us know how long we've really got.
None of us have an expiration date stamped anywhere on our bodies. While doctors refer to statistics when a patient asks how long they will live, people are not statistics. We all have our own unique biology. My cancer has never behaved “by the book.” I personally prefer to not think about when my demise will occur. My affairs are in order, as everyone’s should be, cancer or not. I count each morning I wake up as a gift, and pray for many more. No one is promised tomorrow.🥰
Thank you for writing about this Daniel, and I’m looking forward to reading the article you mention. I so rarely hear it spoken about in clinical settings, though me and my metastatic breast cancer friends talk about it a lot. It’s a particular uncertainty that affects so much at a profound level. How much do I share with my (young adult) children - am I asking them to worry before they need? But if I am going to die sooner I’d like to have the conversations. Do I stop working? Though I love my job the medication is leaving me very tired and in more pain 5.5 years in and it’s becoming harder. But if I’m going to live longer, how do I afford that if I’ve stopped working, and why give up something I love if I had time to do it? Do I put the fear aside for a while, as I’m still on my first line of treatment, and just live a ‘normal’ life given not so much has dramatically changed in physical terms, though mentally I feel like a different person and that that ‘normal’ life is no longer readily available to me. It’s a strange way of living - between the two kingdoms of life and death as Susan Sontag and Suleika Jaouad have called it.
Yes, all so true. I love @Suleika Jaouad’s approach and writing things out or journaling is one way I think we can all cope with uncertainty. Thanks for sharing.
This is so me. And I read the attached article. I’ve been living with cancer initially terminal in 2010. And metastatic 2020. Feeling amazing and hiking every day, or most days, living life like there’s no tomorrow. Sadly, my pension also is living like there’s no tomorrow.
Amazing
Thank you for this thoughtful article. It's so true- people like my husband, who is almost nine years into a brain cancer diagnosis after his oncologist told him he would only have two years to live. He and I often talk about how unfair such comments are, even though they may come from well-intentioned doctors. My husband is a happy "stay-at-home-dad" now, but this transition has been really hard to navigate, and I think there's an even bigger gap when someone is fairly young; it's hard to find others who can understand and relate.
Thank you for sharing that Abby, very true.
I'm struck by the parallels between the challenges you describe in oncology care, and the gaps that exist in mental health care. As you so well described, there is a gap in how the world sees patients with uncommon trajectories. The assumption is that patients either survive and "go back to normal" or they die. It's either treatable or it's not, with no in between.
Therapy training also tends to assume that "remission" is the goal. That we identify a diagnosis, treat it, and then distress is lifted. I would go as far to say that most of the evidence-based treatment approaches follow this frame. Those of us who are versed in the unique emotional challenges of cancer, and how to adapt therapeutic treatment appropriately, are too few and far between. Patients deserve relief from the emotional suffering that comes from prolonged uncertainty and loss. Psycho-oncology, like all oncology, has a long way to go.
Great points
Daniel, thank you for this thoughtful reflection. As an end-of-life doula, I’ve had the privilege of sitting with many people as they navigate serious illness and the uncertainty that comes with it.
One of the things I’ve witnessed is how emotionally destabilizing it can be when a prognosis is framed in ways that leave people feeling they must either “fight” or “give up,” with very little room in between. When death is not allowed to be spoken about as a possibility, patients can feel isolated in their own thoughts and fears.
At the same time, I’ve also seen something beautiful happen when people are able to acknowledge that their life may be limited. Many use that awareness to have long-delayed conversations, mend relationships, take meaningful trips, or simply say what needs to be said. If the timeline changes and they live longer than expected, those things are rarely regretted.
None of us truly knows our expiration date. In that sense, the clarity people sometimes experience after a serious diagnosis is something the rest of us might learn from — to attend to what matters sooner rather than later.
I appreciate your point about the need for mental health support that understands the particular uncertainty of serious illness. There is a great need for spaces where patients can explore both hope and the possibility of death without feeling that one cancels out the other.
Thank you for your thoughtful comments. “to attend to what matters sooner rather than later” is how we should all think I suppose but once your health is in jeopardy it becomes more urgent for sure.
I first encountered this phenomenon when doing ethnographic studies with HIV patients. One of them had done exactly what you said--spent all his money, living his last days large, only to suddenly be the beneficiary of the newly-approved antiretroviral drugs. He was physically doing quite well when he expected to be dead, but was now dependent on government services for basic needs. His emotions were clear: a strange combination of relief and resentment.
People undergoing treatment for cancer these days, like my husband with Stage IV lung cancer, must live with seasons laced with daily uncertainties. It's a whole new way to live, and not always pleasant.
You’re right, a whole new way to live and no guide to follow.
Also on this topic, a very thoughtful and powerful reflection on living with stage four cancer from a psychologist in today's Guardian.
https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle
Thank you for sharing
It’s so hard … my mother was given three weeks to live in July 2020. She lasted another 9 months and passed in Mar 2021 after months of home hospice waiting to die. Didn’t eat for those months due to the pain. Not sure how she made it but it was grueling. For us all.
Interesting perspectives Doctor.
Many of us would strive to be outliers, trading the dread of treatment failure with the dread of each scan potentially showing progression. Either way, there is anxiety; one simply becomes a long dance, a complex tango. I would gratefully take the dance and partner up with a good counselor, hoping the music plays long.
Thank you, Daniel. I passed this on to my Mum and she said it helped to explain how she feels. Bewildered is the word she used. Perhaps we need to change the way we think and speak about prognoses. They are rarely correct and I always worry about the nocebo effect.
Honestly, I’ve gotten further and further away from any type of “numbers” talk over the years. I try to frame big picture and when I see things are happening that changes that need, then we begin to address it. It’s all individualized to a patients goals as well.
Thank you for this. I posted just yesterday how for the second time in my life I am now in the “beyond my prognosis”.
Amen. Metastatic cancer is a roller-coaster.
Indeed
Thank you, Daniel. The mental health support - I’m lucky to have an incredible therapist, she’s the real deal. I wish more could access this kind of therapy.
You nailed it again. :)
Thank you Luann. 🙏
Such a useful and timely piece Daniel. I interviewed an oncologist the other week who told me of S4 patients living way beyond what was initially thought. He told me one gave up work only to 'still be here' and wishing she hadn't. It's psychologically very tough I think.
I think it's quite a existential question really, because ultimately, none of us know how long we've really got.
None of us have an expiration date stamped anywhere on our bodies. While doctors refer to statistics when a patient asks how long they will live, people are not statistics. We all have our own unique biology. My cancer has never behaved “by the book.” I personally prefer to not think about when my demise will occur. My affairs are in order, as everyone’s should be, cancer or not. I count each morning I wake up as a gift, and pray for many more. No one is promised tomorrow.🥰
Amen