Ask HN: Coping with cancer in the family

I lost my Mom to cancer several years ago. I'm really sorry you have to go through this.

0) make sure legal stuff is taken care of, like her medical directive, a family trust, and a will. It won't be a fun discussion, but make sure you know what she wants, especially with respect to what life-extending efforts she wants you to do.

1) her doctor harangued us to perform extremely invasive, expensive, late-stage treatments, even though it would, best case, extend her mostly vegetative state a month or two. If you're their medical executor, don't get bullied. It helps to have someone else to collaborate decisions with.

2) give yourself some slack, emotionally. You may feel guilty that you aren't feeling "the right thing," or feeling "sad enough," or burdening people around you by feeling "too sad." _Whatever you're feeling is legitimate._

3) take care of yourself. Eat well, try to get good sleep, and get regular exercise. You may not want to, but you deserve to maintain your own health.

4) try to record any family-famous stories she has to share, or really any historical anecdotes that may spark joy. Just a couple minutes every other day—it doesn't need to be a big ordeal. Seeing and hearing her in a decade will be priceless.

Given your generalized query, I can only give some general advice for family caregivers. It may even sound shocking or cold at first, but you need to remember to make your own health your number one priority. It rarely makes sense to sacrifice your own well-being to care for others. Sacrifice can be a romantic notion but it is ultimately short-sighted in real life. You need to maintain strength, health, and security (physical, emotional, social, and financial) to not only handle today's events but to handle later events which might be just as challenging if not more so. To provide stable, ongoing support, you need yourself to be stable and functional for the long term.

So, be careful not to exceed your capacity, and make corrections if you find yourself in decline already. Don't be afraid to seek help for yourself. A loved one's cancer diagnosis does not mean you should tough it out and ignore your own "lesser" issues. Many people can over do it and feel the negative impacts with some weeks or months of delay. The delay in effect can also make it harder to recognize what is really at the root of new emotional or behavioral struggles.

On the other side, you might see if support groups or clinical social workers can steer you towards available services. Sometimes, you ought to engage the help of others whether they are charitable/free or paid services. It is not always realistic to do it all yourself, and you may not even know enough to identify the needs and relevant services yet.

Once you have recognized the limits of what you can contribute, you might also recognize where you feel conflicted between work and family. Unless you are independently wealthy, you probably need to preserve your job while providing care. But, you might start to see some aspects of your job or career which could be renegotiated either temporarily or permanently. Are there things you could offload to your teammates or your boss in order to manage your stress level and balance? Do you find your priorities in life shifting with a new perspective gained from the health crisis?

I was a student at the time, and well, didn't handle it particularly well in hindsight. Not sure I can help much with that aspect.

What I do want to say though, is if she makes it through this round, fingers crossed, ask the doctors where the cancer she got might spread to, and be very observant of changes in those areas.

I now have the sad experience of losing my dad and seeing two close friends lose one of their parents due to cancer that spread. Common for all three was that the spread wasn't detected because it happened in another area in the body, and nobody connected the dots.

In my dads case, after a year on asthma meds (he never had symptoms asthma before) the cancer was accidentally discovered in his lungs. Then the doctors say "oh yea, if the type he has spreads, it's to the lungs"...

In my dads case it would have been terminal either way, they couldn't remove it from his lungs. But it would at least have saved him over a year of needless pain and suffering before they figured out he didn't have asthma, and possibly slowed it down more.

Mom was diagnosed with triple negative breast cancer a few years back. Thanks to immunotherapy she's doing well, but it was an absolutely brutal road that involved surgery and lots of chemo. Not out of the woods but we're optimistic.

Anyway, a few things come to mind:

1. anticipate needs, especially as she gets further into chemo. Blueberry and spinach shakes with protein power was something she found vaguely palatable after infusions, so I kept the ingredients on deck if she woke up in the middle of the night hungry and in pain. Small example but stringing enough of the small things together is hugely supportive, which goes a long way psychologically.

2. Ice her hands and feet 15 minutes before chemo infusions and throughout. Does a lot to fight neuropathy, which is awful. She came out relatively unscathed; a friend hers who didn't ice has issues walking.

3. bit of a continuation from 2: cancer treatment is full of small horrors. Is her port going to get fucked up? Is she going to have a reaction to this new drug? It goes on. Gear up for it. I kept an internal dialog that went like "harden the fuck up, get through this shit for her, not you." Corny but useful.

4. Walk the line between being helpful and being overbearing. My mom hated being "the cancer patient". She needed support but didn't want to be babied.

5. Have her join a cancer group. My mom has made some incredible connections with people also fighting breast and other cancers.

6. Moderate what you're reading online and don't go too far down the rabbit hole. You'll hear this from her oncologist and others too. Obvious reflex but counterproductive

It won't be easy but I wish you both good luck. Medicine is getting pretty good.

I'm sorry that this is happening to you and your family. My mother was diagnosed with breast cancer in my final year of university. She had surgery and chemo and had an 80% chance of permanent remission. In my third year working as a SWE, her cancer returned. She lived another year.

A minister visited us the morning after she passed. They said some things that I needed to hear: Death is common. Grief is part of life. The pain lessens with time.

Here's my advice to you:

1. You will have inconsistent productivity and lower overall productivity. Talk openly with your manager about it. Every two weeks, have a 5-minute one-on-one meeting with them and ask for their opinion on your recent performance and their expectations. If your manager is unwilling to do this, then switch teams or jobs ASAP.

2. Talk with a trained therapist once every 1-2 weeks. They can teach you critical skills. Attend the free 10-day Goenka Vipassana meditation course. I did both of these things years later. I wish I had done them earlier. Also help your family members to get therapy and learn the skills, especially your father.

3. Dedicate some time every week to researching your mother's disease and treatment. Frankly, humanity's knowledge of cancer is still rudimentary. You can learn it. Clinicians just do what they learned in med school. You can find the researchers who specialize in your mother's particular kind of cancer, read their papers, contact them, and get her into a trial. If I had done this, my mother could have participated in one of the early trials of the TIL cancer treatment [0] and could possibly have been cured.

4. Call and visit your family members more frequently. Take short selfie videos with your mom. Also take short videos of her with people you care for. Take trips together. Send your Mom & Dad on a nice vacation. I recommend Waikiki.

[0] https://en.wikipedia.org/wiki/Tumor-infiltrating_lymphocytes