My biggest immediate concern was the impact on family, and them viewing me differently and treating me as a sort of victim. Due to extreme rarity of my particular cancer the outcome was individually unpredictable. Overall the odds of survival are very low and death is often quick; a recent research paper uses the phrase "a grim affair" right in the title (some doctors get excited to see a singular case in their professional career and then publish a case report). It was simply unknowable at the time whether it was terminal or not.
What to do?
I expressly forbade my family to do any research and try to be medically helpful, including my wife who is a tenure-track science professor. Also I banned any form of pity.
I kept up social connections as well as I could, went on hiking trips in the mountains with insanely low PLT counts, attended big weddings in five different countries during chemo, and took other – in hindsight outrageous – risks just to keep living life. The pandemic has been much worse socially than very intense and prolonged chemo treatment.
I never asked about any kind of prognosis, although I had pulled the data from SEER as the most unbiased data source and assembled the L-shaped KM curves from that myself. Doctors only later admitted they thought things were "very bad".
A perhaps selfish thing I did was to avoid other patients during treatment (though my oncologist liked discussing other cases with me, as we never had to debate anything about my own case). The emotional burden would have been too large. I had observed in a FB group how entire families become obsessed with cancer and cannot pull themselves away from that many years after their loved one has passed away.
My family and friends mostly stuck with the rules and emotional damage was largely avoided.
The worst feeling for me as a patient was not impending doom but a loss of control. Certainly some will enjoy "being taken care of" and whatnot but that is not everyone's style. Let the patient decide which approach is right for them.
Every patient is different. Please respect their express wishes, even if that involves taking a step back from being overly helpful and involved.
Medically, I actually disagreed with some of the decisions from my – very competent and highly rated – doctors, and they were fine with that and followed the modified plan. Nobody can know whether this made a difference but things seem to have worked out surprisingly well for me.
My biggest immediate concern was the impact on family, and them viewing me differently and treating me as a sort of victim. Due to extreme rarity of my particular cancer the outcome was individually unpredictable. Overall the odds of survival are very low and death is often quick; a recent research paper uses the phrase "a grim affair" right in the title (some doctors get excited to see a singular case in their professional career and then publish a case report). It was simply unknowable at the time whether it was terminal or not.
What to do?
I expressly forbade my family to do any research and try to be medically helpful, including my wife who is a tenure-track science professor. Also I banned any form of pity.
I kept up social connections as well as I could, went on hiking trips in the mountains with insanely low PLT counts, attended big weddings in five different countries during chemo, and took other – in hindsight outrageous – risks just to keep living life. The pandemic has been much worse socially than very intense and prolonged chemo treatment.
I never asked about any kind of prognosis, although I had pulled the data from SEER as the most unbiased data source and assembled the L-shaped KM curves from that myself. Doctors only later admitted they thought things were "very bad".
A perhaps selfish thing I did was to avoid other patients during treatment (though my oncologist liked discussing other cases with me, as we never had to debate anything about my own case). The emotional burden would have been too large. I had observed in a FB group how entire families become obsessed with cancer and cannot pull themselves away from that many years after their loved one has passed away.
My family and friends mostly stuck with the rules and emotional damage was largely avoided.
The worst feeling for me as a patient was not impending doom but a loss of control. Certainly some will enjoy "being taken care of" and whatnot but that is not everyone's style. Let the patient decide which approach is right for them.
Every patient is different. Please respect their express wishes, even if that involves taking a step back from being overly helpful and involved.
Medically, I actually disagreed with some of the decisions from my – very competent and highly rated – doctors, and they were fine with that and followed the modified plan. Nobody can know whether this made a difference but things seem to have worked out surprisingly well for me.