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Comment by ahhhhnoooo

20 days ago

I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.

Did she ask you to cure this tumor? Did she ask you to post about it?

This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.

It leads to especially dark places when they don't succeed.

I wish him all the best, but don't lose sight of the human suffering the illness and what they want.

This post was actually really tough for me to read, because it read exactly like the suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.

If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.

I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:

His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong

  • I’ve been here. I lost my wife to a metastatic tumor. He’s coping with the horror through determination to fight and win, and communicating it.

    My person had 4 surgeries, countless MRIs, you name it. We had access to the best doctors in the US. There was no way she was going to not beat this thing. We booked a vacation and there was no doubt in my mind that we were going to be there. Until the day that changed.

    The dude is a little unhinged. He’s trying to have some agency and control where none exists. He wants to save the girl he loves. So did I. Give him some grace.

    • Yup, you got it. I'm a survivor (so far) from a relapsed cancer myself. People have no idea of the kind of insanities you are willing to pursue in such desperate situations. Grace and forgiveness is the right approach here.

  • I don’t agree.

    She has posted publicly about her condition.

    He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?

    His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.

  • Oh, thank you. I wasn't able to figure it out exactly - at first I thought OK, the girlfriend died, that's why this post... But with her _alive_...

    Re read it, it sounds like he's the victim: He was haunted during vacation. He was the rock. He fell into fetal position. I mean, sure, he's _a_ victim, but until she dies, if she dies, this is about her. Curing her is again about him and his want for kids.

    • > I mean, sure, he's _a_ victim, but until she dies, if she dies, this is about her.

      Yes of course it's about him. That's often why people write things. My girlfriend died of cancer, and let me tell you it was pretty rough on me!

  • What would you suggest as an alternative? Just quietly follow the doctors' instructions and hope for the best?

    • A close friend is considered one of the best neurosurgeons at one of the best hospitals in the country. Brain tumors are his specialty. I remember him once saying he was growing exhausted about his job and thinking of retirement, even when he’s still young. The reason being, most of the other doctors in his team were not very competent and he had to constantly review and correct their work. He’s not an arrogant guy but all the contrary, very down to earth. For him to say something like that is because the mistakes he sees have to be bad. Every time he tried to quit, the hospital threw so much money at him that he could not refuse it.

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  • > I don't know, it just sounds immature and wrong

    Isn't he like 25? My partner died of cancer when I was 37 and it was a pretty difficult time for me!

  • Exactly, the unsettling thing is the fixation in himself, what he thinks, what he already knew before everyone else, how important is the work he does, how he got the best doctors, and now he is going to cure his girlfriend's tumor. Couldn't make it past the half of it, frankly insufferable.

I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.

For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.

I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.

It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.

One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.

I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.

A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".

It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.

  • I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.

I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable. Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.

The symptoms if they came back would kill any hope for traveling anyway

It’s an innate human desire to do everything in one’s power to save the person you love.

If you had a feeling you could do more, would you not try?

When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.

I have seen this multiple times and it’s always so unbearably sad.

Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.

>It leads to especially dark places when they don't succeed.

The same can be said about child birth, and yet, people still make kids.