Ask HN: Coping with cancer in the family

My experience got worse before anything got better, but depending on where you're at, it might be helpful to you so I'll share it anyway.

My dad was diagnosed with stage four prostate cancer shortly after I got out of the military. I was already dealing with a litany of issues related to post-separation and military service. My first piece of advice is to decide what level of proximity you can maintain with your mother without letting it affect you. I saw myself in my dad, especially in his lowest days. Make no mistake, my dad has (spoiler alert: and continues to) fight cancer valiantly, but in those early days there was a lot of regret that he even chose to live. On the other hand, my dad being able to confide things in me was immeasurably good for him, and something that therapy and a stranger would likely never accomplish. These days I call him once a week and we talk about things he's up to, I listen to his day, and help him make decisions. I try to encourage him to get out, share his story, and make friends -- his life seems to improve as his circle expands. When I was caring for him day to day it took its toll, but there also weren't many other options. In life you sometimes have to walk with someone through the shadows of their valleys, helping them build the tools to hike out of the valley.

When you determine your safe distance, it's easier to plan things like learning back into your life. My dad loved hearing about what I learned and loved being shown what I was up to. Doing this kind of stuff inadvertently helped pull me out of my own drinking spell. Watching me grow as a man, and heal in my own way seemed to help him all the more. At the very least, it took his mind off of the idea that he was stringing his life along a little at a time with various treatments.

In times of stress it's often easy to fall into routines. For some people those routines are working (and overworking) or drinking (and over-drinking). I managed to accomplish both at the same time. I only managed to undo these routines by keeping a journal and reading my thoughts a day later. It helped me reflect and deal with my feelings in a detached way. I wrote several times that I knew what I was watching: my dad was dying and I had a choice to make in how to deal with that. I didn't know what choice I would make, or even if I would be cognizant of making said choice. How you deal with that reality is entirely up to you, and there is no wrong decision except self-destructing. The important piece that I would leave you with is have a way to audit your thoughts, because inevitably that is what helped me the most.

The last thing I'll say is a continuation of my last point. Eventually I realized that my dad will die, and some day all I will have is voicemails and letters or things he's left me. My memories of him will continue on, though. The good ones, the bad ones, and everything in between. When I go home I try to make good memories with him. When I was a kid we bonded by playing video games. He can't play them as good as he did back then, but I'll bring an extra controller and we'll play together. These memories are the ones I hope to have with me after he's gone, but in the moment I always aim to be present.

I don't know if any of this helps but these are the tools I used to build a career and (try) to stay sane during that time. Things do get easier with time of course.

I lost my mother to breast cancer when I was 14, and although it wasn't cancerous, my youngest child was diagnosed with a heart tumor at 19 months (she had a successful resection and is thriving with no symptoms). Two dramatically different family health dramas where I was in vastly different positions to help, and states of mind.

For a kid dealing with loss (or potential loss) of a parent, having a strong support group and a few trusted confidants and/or therapists to talk with is absolutely critical. I didn't really have that, and a lot of unpleasantness in the ensuing years likely might have been avoidable if I had.

As a parent dealing with life threatening medical situation with my child, it was different. With both, though, several things are true:

1. Your social support group is important. Don't feel bad about asking for help, and leaning on helpers who offer their assistance (whatever form that may take).

2. Work is work, but a good employer will offer EAP services, reduced hours opportunities, perhaps internal counseling, and unpaid medical leave if you need it. Don't be afraid to talk to your management about your situation if you think it will affect your work, but do your due diligence first and offer them solutions, not problems.

3. If you aren't a medical professional, or you don't have significant relevant experience dealing with complex, long term engagements with hospitals & specialists, I strongly recommend you find someone who does. Recruit that person to be your advocate (at best), and to at least let you bounce information off of them as a sanity check.

The people who have the best outcomes are the people who ask the right questions, demand the best care, expect the best from themselves [are are in a strong socioeconomic position to be able to afford to let other things slide while dealing with the treatment & recovery].

Rule #1 about complex medical care: never accept prognoses and recommendations without understanding the care professional's POV and having done your own research, AND preferably having solicited at least one additional opinion. Pubmed is your friend -- do your own research. Poll your network, find community groups online (I really don't like recommending Facebook, but there are facebook groups for literally every conceivable medical condition & situation -- they're filled with great folks who have already done their research!), and get formal second opinions. Also, know your rights as a patient.

I can't help with the "how do I care for aging parents" part. My dad is thankfully still in good health and my inlaws (who are not) are 3000mi away and primarily looked after by my brother-in-law. They're fiercely independent but make consistently bad decisions about their health. It's frustrating.

If she can't eat, keep her hydrated.

A relative of mine survived colon cancer when they were not expected to and was gaining weight during a time when most cancer patients are losing weight. If he couldn't eat lunch, he got a homemade milkshake with milk, ice cream and fresh fruit. If he was too sick for that, ice, frozen juice and frozen fruit got blended together.

Some days, such meal substitutes accounted for both lunch and dinner.

Good wishes. Sorry you and yours are going through this.

I went through this with my sister 10 years ago. One thing that stands out: work. My employer was great, very supportive, no pressure at all. By contrast, my other siblings were constantly stressed out. They kept trying to squeeze in work at the hospital, saying stuff like, "My boss knows I'm at the hospital with my stage-4 sister, but he keeps calling me. He's gonna fire me if I don't get back in the office." This is when I fully realized the value of company culture - actually caring about staff, or at the very least, not treating staff like shit.

I'm still at the same company, and I have never even considered quitting (no serious consideration, that is), mostly because of this experience. It meant that much to me.

Thank you. That’s kind of you to say.