u/robert_zeh

My sister died on Monday after 18 months with pancreatic cancer. I don’t know if any of these lessons generalize, but I thought they might be helpful.

• The bad news is that time is not your friend, but the good news is that many of your choices are extraordinary simple: now or never.
• The pace of cancer care is agonizingly slow. Some of the things you can do to deal with this are:
  • establish medical care at more than one institution so that you can get a second opinion and be able to act on it quickly. Even if the second opinion is “we wouldn’t change anything” it is reassuring to know you’re on the right path.
  • Establish care at institutions that have trials well before you are thinking about trials, because it could take months to get booked for a visit.
• Expect bizarre bureaucratic issues; for example, if one hospital installs a chemotherapy port another hospital might refuse to fix it. It’s like a used car warranty.
• If you’re hospitalized, transferring to another hospital can be extremely difficult. If you travel there is a risk that you get stuck.
• Expect a wide divergence in pain management between institutions (another reason you’ll want to establish care at multiple places). How you present matters; the only reward for stoicism is poorly managed pain. It’s helpful to blackout. Don’t ask how I know. We ran into physicians who acted as if they were worried about creating an addict, and you should avoid them.
• Pain management at hospice was way better than anywhere else, even though the pain was at it’s worst.
• You absolutely need someone to go to doctor visits and hospitalizations with you. You need someone to catch things you and the doctors miss, and someone to advocate for you when you can’t.
• Doctor's do miss things so don't be afraid to ask stupid questions. Don't assume they're getting everything right, because they don't.
• There is one single person who will coordinate your care, looking at trials, checking for things like "can I get dental work on chemotherapy" and making treatment trade offs. Unfortunately it’s you, the patient.