Posted by jjmaxwell4 3 hours ago
Our friend group went through the support-mode version of this this year and much of the advice rings true.
To add, a giant shared document that the group of friends had access to in order to take notes. Findings, theories, doctor statements will be shared when the patient isn't in a great place to be taking notes.
And for anyone reading this that might have someone facing cancer in their lives, go make a nuisance of yourself being present - feel empowered to spend a bit more time than you might initially think is necessary/helpful with them. Facing this stuff alone is when it is at its hardest.
I was hospitalised (not cancer) and completely zoinked out of my mind due to sleep deprivation, constant blood loss and being in pain 24/7. People did visit, but I guess they just thought... I have things under control? I wish they had talked to the doctors and asked more questions. In the end I came out of it fine, but I probably would have gotten a better result with someone advocating for me.
Please go and be a nuisance. As someone with a clear head you will likely be able to understand the topic better, from a more neutral standpoint, and potentially push for the best possible treatment.
I cannot recommend this enough, including writing down almost every day about symptoms and progress. I didn't have cancer, something else, but it was very valuable to be able to go back and see exactly how long time a symptom has been present and when it disappeared.
Doctors also seem to react well to being able to be precise in descriptions of what happened when.
Doc: "Do you have any other medical conditions besides your {red eye,stomach ache,itchy foot}?"
Patient: "No."
Doc: "Are you taking any meds?"
Patient: "Yes I am currently on chemotherapy for my cancer."
Doc: "Okay... so you have cancer?"
Patient: "Yes I have lung cancer."
They do. In my experience they're usually pleasantly surprised when you have dates and timelines rather than "oh I don't know, about a year ago?"
That being said the reaction differs if you offer a self diagnosis (assisted by google or chatgpt) rather than just symptoms. There will not be pleasantness. It's a toss up between a dismissive "yeah maybe" and "uh uh, did google tell you this?" Many doctors will 100% listen and consider what you say, but in my long life I've learned that offering a self diagnosis must be done very tactfully.
On one hand it's understandable, us as programmers don't enjoy having a nocoder arrive with "yeah so chatgpt says this is no good" and having to explain to them why they're wrong. On the other hand modern patients do their own research before consulting, so it's worth at least considering what's being said.
It does not always work, but a lot of doctors in my experience take some time to kindly explain why they think the other possibilities I'm concerned about are unlikely, and sometimes my questions actually prompt them to add some additional investigations.
You can do whatevvr you want with the audio files - have them transcribe them, summarize them, hand them to an agent, upload them to your cloud, whatever.
The standby and talk time is really great on both the pins and the credit card sized versions.
I have a lot of friends that now use them with elderly parents/their own medical care when they need to really be able to have something automatically record/transcribe the visits.
1. If you want something totally open source: https://github.com/RemiPelloux/OpenPlod
Local-first Plaud Note Pro recording vault, transcription, and Markdown workspace. Which sounds like what you want.
2. the Plaud SDK will let you pull from the device and send it wherever you want without touching their servers.
3. You can also use the mobile app, disable cloud sync, and export each audio file as mp3/wav to your phone/tablet/whatever if you don't want to use #1 or #2.
You can have it upload to your private cloud without doing any of these, but it still transits their servers first i believe, which it sounds like you are trying to avoid
They also do that if you show them pictures of your poop when you have a bowel thing going on.
Coming to peace with that uncertainty is the only way you can survive it.
And the guys advice to get a second opinion is a false confidence. The diagnostics are primitive and low signal, and they all share the same NCCN guidelines for therapies. Peace of mind has value, but you’re not going to receive any revelations.
This advice can be applied to most things in the life. Expecting the machine in any context to take care of you will likely leave you disappointed.
- You are the least-constrained team member in your healthcare: At an appointment, your doctors only get to spend ~30 min on your problem and it's unrealistic to expect them to be as deeply involved as you are on your healthcare. Yeah, you yourself can spend days or even weeks researching you health problems and planning your healthcare.
- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.
- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.
There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.
Hey, could you share one of these chats with the "Share chat" function? This might be of interest to a lot of law students.
Just by being posted here on hn, it will probably be discoverable by anyone that searches for cases where an LLM gave damaging medical advice.