Ask HN: Coping with cancer in the family

I took "family leave", which is possible depending on which state you live in (within the US at least). I was able to take three months of leave (at a reduced pay).

I lived in the hospital the entire time. I never went back to work though, I just couldn't find the focus, time or effort to be productive in a work/team environment. I honestly lost all "care" for work. I couldn't push myself to care at all and work on something when I was sitting in the same room as my daughter and seeing what she was going through.

My daughter is now 6 years old and I still haven't gone back to work.

What has helped me? Not much.

Seeing the care and love from a few friends and family members has certainly helped me and my family, but at the same time I have grown to dislike a lot of people that weren't around at that time. I feel like I learned who my real family and friends are.

If you're wondering how the friends and family helped... they were simply there, repeatedly. They helped us when we were in New York for treatment far from home. They quit their job and flew from their home country to live with us for over a year to help take care of our other daughter while we were living in the hospital.

Reading Marcus Aurelius' Meditations (Gregory Hayes translation) helped me really think long and hard about my life and what matters (and what doesn't matter). It certainly helped me push forward.

A lot of her life is going to be cancer this, cancer that, these drugs and those drugs, doctors A, B, C, and D, and always an another upcoming appointment on the calendar.

It's tiring for her and it's hard to maintain ones dignity when everyone around you is being constantly sympathetic over a protracted period of time. It's a difficult idea to convey; you don't want to ignore her struggle and illness. Just don't let the cancer subconsciously become your definition of her.

As far as coping, it's going to get worse before it gets better. Hearing the news of cancer is like grief, except worse because you have the legitimate hope that things might get better.

It was by far the hardest and lowest point in my life.

I won't go on about all the difficulties because they're too painful and personal to me, and your mother may not be terminal, but mine was so I'll speak from that experience. Here's what I wish I would have done more of:

1. Spend as much time as possible. Lay by her, watch TV, eat together. Just being in the same room is important. I'd give anything to go back and spend more time.

2. Try not to argue, even if she's taking our her fear, anger, etc on you. Her emotions might be all over the place. Resist the urge to need her and let her depend on you for emotional support. Hug her instead of fight with her.

3. Lots of back and head rubs, foot massages.

4. Pick up the slack as much as possible. It can get bad--you might need to change diapers, clean bedpans, and clean vomit. Those are powerful acts of love from a child to a mother.

5. Tell her as often as possible how lucky you were to have her as your mother.

My 11 year old son passed away earlier this year fighting cancer, he suffered from it twice over the past 6+ years. Our entire lives for the past few years have been trips and stays away from home

The first thing I can say is , you have to take care of yourselves both physically and mentally to be able to take care of your mother. You would end up making numerous decisions both small and large and the whole thing is taxing. In the initial stages of the diagnosis, we did not know what hit us, initially I took a break from work until I could get a grip of the situation. We realized that no matter what, we have to deal with it and keep our son happy and safe, there is nothing much we can do apart from keeping him happy.

Working helped me (Working from Hospital) , it helped me keep the focus and not getting overwhelmed with sadness. I used to work for an hour, then back to my son and so on in the first half of the day.

For you personally, figure out what works for you as a diversion, Work, reading books , movies etc. You need some time off to keep you balanced. I tried all these for the last 6 years – depending on my mood and it definitely helped.

Please take to other families at the hospital etc., it helps.

Please make sure you spend quality time with your mom , doing things which you always wanted to do, talking things you always wanted to talk. It keeps them happy and it makes you happy.

Sometimes , she might not tell you what she is going through; be patient , be strong.

Have been a read only HN member for many years, registered to respond to this. If you want to talk please ping me back.

What worked for my parents is that we have access to some of the best cancer doctors in the world. It really is "worth it" to drive an extra hour or two to consult with a leading oncologist; even if the answer is just "I'll advise the doctor close to your home."

Fortunately, the timing worked out that one parent cared for the other. My wife and I had two babies during the process, so we weren't able to live with my parents, or "commute" them to chemo. We did tell my parents that, if they were going to undergo treatment simultaneously, that we'd need them to live with us so we could take care of them and our children.

What helped is that my parents are naturally active people. They just accepted that they will have tired days, and slowed down a bit. Our biggest worry was that they were both undergoing treatment during summer 2020, and often weren't as careful as we were. The lockdown helped, because we only saw each other on good days.

But, here's the good news: Modern cancer treatment is a miracle. If this happened 20 years ago, I don't think either of my parents would have survived.

Anyway, if you're read this far, all I can say is: Try not to think about it too often. Reframe cancer in your head as a chronic disease, and make an effort to spend quality time with your loved ones. I very rarely tell people I know about my parents' cancer, and this is the first time I've ever posted about it online.

It took an emotional toll on my family. I went to a competitive public high school so after feeling tired from school I would come back home and see my mom with a wig on or hooked up to a pneumatic pump which she still uses daily even after remission. It just made me feel even more depressed on top of the feeling I had of not being good enough to my peers. I even shamelessly tried to use this event in my college apps which was a terrible idea in hindsight.

But I realized that this mindset that I had wasn't productive. At least for me, I try to think about how there are people out there who have it way worse than me: abusive families, poverty, etc.. When I saw on Facebook that a classmate I knew had their mother pass from cancer and they still kept a positive attitude, I realized that my family had gotten lucky and that, for me, the problem I was dealing with wasn't so much my mom's cancer but my mindset.

So I would say just try to find something, anything, to be grateful for everyday. These things are emotionally devastating and I wish the best for your family.

She went through 2 surgeries, multiple rounds of chemo, radiation therapy, the the whole nine yards and this went on for three years (she was in remission for a year).

Anyway, based on my experience, cancer is bullshit. That being said, you _can_ live with it. You have to remember that for a loving mother, you're her light and hope and this means that now it's time to pull up your sleeves and get to work.

Take her to all the appointments, get her all the medications she needs, take her for walks (cancer has good days and bad) and give her healthy food and the treats you know she likes. Watch movies and do silly stuff to make her laugh. Look over family pictures and tell her about your future plans.

Don't be upset if she acts differently around you, your job is to make her feel protected and cared for.

Cancer is the ultimate poison in life but you're breathing life into her and having your company warms her heart. Don't give cancer an inch because fuck that disease.

As I'm typing this, I would give up everything I have right now to spend another second with my mom because let me remind you that nothing and I mean nothing is more precious than the bond you have with your family. Screw "daily tasks" at work, all the money in the world will not replace your mom.

I tried to manage my work while going through it, and negotiated with my manager that I'd be working roughly 50% of my time with the possibility for unexpected days off (my mom had several hospitalizations for transfusions which were unplanned/unexepcted). It wore me out tremendously emotionally, and at the end of it I got a poor performance review for that time period.

I strongly regret not taking "family leave," which if you're in tech your company should offer. If I had taken it, I would have maintained good performance standing in my company as they default you to it if there's insufficient data. Instead, even though my manager was on board with giving me a good performance review, the "bar raisers" decided I hadn't done enough work in that time, and it had knock-on effects on my burnout, because on top of getting back to work normally post-chemo while already being exhausted, I now also had to work extra hard to get out of a bad performance situation.

Additionally, while I did get a good bit of work done during that time, if I had had the time completely free to take care of my mom I would have done a better job taking care of her, and would have had more time to also do self-care, which is extremely important when going through such a difficult time and watching someone you love suffer.

I really wish you the best, I completely understand your situation and you can reach out to me at ryan @ mcafeeryan [dot] com if you want to chat about any of it. It's going to be hard, it's going to suck, and you will get through it.

What's help me the most is how my father has dealt with it. He has the best attitude of anyone I've heard of with this condition. He's always positive. (Maybe that is not much help for you, but it's at least something to consider.)

Another thing that helped me was seeing him take control of his time and energy instead of having it dictated to him. He did very light chemo early on, 3 weeks. And I've never seen him so low in my life. First time ever that he didn't meet me at the door when I visited. He didn't get up one time when I visited.

He stopped chemo (his choice) and his hair is getting color back finally, and he's been doing better.

Talking with him every day about normal life things has made the situation bearable and dare I say, mundane, for now.

If I was in your shoes, I'd get your mom to be able to live as normal a life as possible with the time she has left. Everything that drags her down should be set aside. I help my father with chores and small activities, and I have come to accept that this is likely that last days I will have with him.

All our parents are going to die, it's life, might as well have the last days be as decent as possible. It's hard to suggest not taking treatments, but quitting chemo is what turned my father from a zombie back into his nearly normal self. He may die faster this way, but he's able to spend the time he has left some what normally.

Again, I am sorry you are having to face this. I am blessed that my father is not suffering severe pain right now, and I hope you and your mother find some comfort.

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.

It's very difficult to be a caregiver and, without a doubt, the additional burdens that places on your life make finding the life/work balance even harder. And, then, you have the emotional aspects of having a loved one in their journey.

As a software consultant who simultaneously was a patient (Stage IV melanoma) and a caregiver to my wife (Acute Myeloid Leukemia) with two kids (tween and teen) nine years ago, it was definitely a struggle.

Some suggestions:

* Don't be afraid to ask for help from other friends and relatives to lessen your burden.

* Schedule time for yourself on a regular basis to take a break from the situation. (I personally started regular cycling and yoga, but YMMV.)

* Communicate with your manager and colleagues to help you get some work flexibility. Of course, remote work opportunities will give location flexibility, as there is often a lot of waiting between scans, appointments, and treatments.

* Seek a professional therapist if you need someone to help you sort through the tangle of issues in your head.

I wish you mental peace as you travel this unexpected journey with your mom. It's not easy, but it is possible to navigate this rough patch in life and come out better and stronger on the other side.

For myself, I tried to bury myself in interesting work as much as possible; but that will only get you so far. I made a point to make as many memories with her as I could. Those activities and trips I didn't think were important became the utmost priority. It also made me realize how much I didn't like my job and where I was living, it was a period of reflection - not just on my relationship with my mother, but if the career path I was on was something I actually enjoyed.

I'd recommend just being as available as possible and trying to have as much quality time as possible. Hopefully she beats it, but I think you should remember that any time you have with her going forward is borrowed time. Make some great memories with her, take lots of pictures and videos! Learn about her childhood and her parents and grandparents!

I put a brave face on and tried to support my family putting myself second. When I eventually addressed my own emotions and experience in therapy I realised I was only bringing about 10% of what I could have had a really looked after myself.

If I had that time again, during his treatment, I would have been there more for the brief peaks of his health and not rush back to work knowing the fire was briefly burning less, rather than just being there in troughs when he was less present and alert. Obviously be there for the tough times when your family needs you, but don’t let work take up precious moments you could be having with your mum.

Good luck, wishing you and your mum all the best.

One thing I would do better if / when I go through it again: When people say: "If there is anything you need, just ask", accept immediately and specifically.

- please mow my lawn every week, or organize someone else

- please do this shopping trip for me

- please cook Friday evening meals and bring them around

- please wash my car

I'm really busy, please make this problem go away for me.

People are often keen to help, they just don't know how. Tell them.

I'd go to meetings with my Mom's cancer team and hear totally different things than she and my dad did. They both viewed everything in the rosiest possible light. The oncologist even said at one point something along the lines of "a lot of doctors wouldn't consider treatment in this situation" (an acknowledgement of how unlikely success was) but they could only hear "there's a possibility it could add months or even over a year."

Cancer treatment can be absolutely brutal. Perform a real cost benefit analysis on whether the treatment adds any real value. Try to make family members understand that gaining a few months of a tormented existence may not be worth it. Make a list of important things for your mother and focus on seeing those through.

In the end, I was the only advocate for moving to hospice rather than treating. I did not advocate strongly enough. My mother was dead four months from diagnosis, after suffering all the symptoms of chemo in addition to the inevitable decline that comes with the disease. I think the worst thing about it is she kept so much hope up until the very end, focusing on clawing out every extra second of life at any cost rather than making her peace and coming to terms with reality. She ended up in hospice after all - but rather than starting there in a peaceful environment, she fought every painful step of the way in endless medical corridors and care facilities, until she had a stroke that took away her mental faculties to the point that she couldn't even appreciate what was happening. My family all lives with regret on this point.

Don't let that happen to your family.

All said, we had it very “easy”. But that didn’t lessen the impact it had on my psyche. The diagnosis and decisions about treatments put us in a cloud for easily 3 months (could hardly carry a conversation at work). Even after that, it took me about a full year to really feel like anything at work was even important. I coasted for probably 2 years all said. My work was extremely supportive and I offloaded much of my responsibilities. It was probably something similar to a depressive state. I disconnected from almost anything not related to family. Even now, I have not jumped back into my career full stop. I enjoyed the balanced pace and have only went after opportunities that aligned with that. (Probably common to what many people are doing now that it’s “post”-COVID). I view this as a silver lining along with the big silver lining of it pushing us to decide we actually did want a kid (we now have a 3yo).

If you’re the breadwinner and have a demanding job that does not tolerate lower performance, just be honest with yourself on your priorities and be proactive to leave on good terms and find the job that will work for you. What I learned most of all is, there are big things that happen in life that will force you to rip up your game plan and pivot. This is what worked for me. I met several people along the way that said they dealt with it by diving deeper into work. They found it a good distraction I suppose. But for me at least, that’s a recipe for regret and I never thought that made sense. I wish you good luck and hope my perspective/experience gives you food for thought at least. Email me if you want to chat (in profile).

Some things that help:

If work is demanding, find whatever time you can to communicate with her. Send fun texts. Play a game together online. Whatever. It will help distract both of you. If you can't be with her, call as often as possible and check in to see how she's doing.

Spend time alone to process. Get an AirBnb somewhere remote or take a road trip by yourself. Tell your employer that you need time off and take a zero-f*cks-given attitude about doing it. If they let you go, that's on their soul. Prioritize your sanity and the well-being of your family above everyone and everything else with no remorse. You won't regret it.

Find old photos and if she can, spend time laughing with her and remembering you growing up. I'll always cherish the last Christmas I got to spend with my mom cooking and laughing at how bad I was when I was little.

Don't expect anyone else to "get it" or to care and don't be offended if they misunderstand the situation. Unless they've been through it they have no frame of reference. This helps avoiding the inevitable snap when the psychological pressure becomes too much.

Never hesitate to email if you need to vent/talk: me@ryanglover.net.

I'm also an expatriate, seeing her suffer from a distance was extremely challenging, and I regret not being physically closer while she was alive.

I don't have any advice for you except that I deeply sympathize with your situation. I found that work was a good distraction for a few hours a day. There's no right or wrong set of feelings.

I wish you, your Mom and your family all the best.

Things can be very difficult when you're waiting on and interpreting test results. It can be hard to wait as the anxiety will be massive. Meditation seemed to help me, but only to a degree. Try to find things that help you be OK with not knowing, because there may be a lot of that. Walking also helped me.

I'd recommend picking up A Guide to the Good Life by William Irvine as well. He discusses a concept that I was so thankful to know during that time: how to really, truly cherish the people you're with when you're with them. Give your attention to them totally, and understand what they're feeling, what they're wanting, and how you can make them feel loved and make yourself feel like you did the most with the time that you had.

Good luck, I hope things go well for you. Let me know if I can provide any more information.

In terms of work, etc., that all comes second. Quit if you need to. Be there for her and the rest of your family and you will never regret it - full stop.

In that same line of thinking, grief counselors can be amazing. While grief counselors are typically associated with loss of a person, they have also helped my father with trying to deal with loss of the person he used to be. It has also been helpful to have a counselor or someone similar that is specifically focused on him, rather than all of his other slew of doctors which are more focused on the disease.

Practically, it means this: if you have someone else that makes themselves the center of attention, make sure they don't make your mom listen to the concerns or troubles they have. Make sure your mom can express her worries or troubles however she wants, even if it's offensive or troublesome for you and others in the inner circle.

My sister is going through cancer right now, and her friends have set up meal trains, transportation to appointments, and the like. It's super helpful for her, spreads the support around, and I think overall a good thing.

I'm working as a software engineer and I love solving problems but in this situation I'm absolutely helpless and I'm incapable of contributing in the slightest. It feels horrible. It can be hard to focus at work, but it is a distraction.

My mother just beat breast cancer not too long ago, it was a very long road, numerous surgeries, chemotherapy, an insane amount of pills, appointments, it's been hard. In the spring she was declared cancer free, we threw a party, everyone had a great summer, planned a few trips, but come this fall noticed something wasn't quite right with balance.

Dropped her off for a simple checkup. Maybe she just needed some physical therapy? Didn't hear back from her for a few days. They did an MRI and some tests. I get a call from her a few days later. Turns out now she's got brain cancer. It's in the pons. No surgeon will touch it, they can't even biopsy it because any mistake can prevent breathing or other critical functions. They still can't figure out where it came from. She got sent to Mayo for research and pulling at team together.

Her symptoms quickly got worse, blurred vision, losing control of her entire left side, so they immediately started radiation. We don't know where it's going to go from here because they don't know what to do. To make matters worse she's a teacher that almost got to retirement and is fighting every day with paperwork and countless calls and administrative offices to deal with insurance benefits, COBRA, pension, and disability. She used up all PTO and whatever benefits to get through breast cancer. It's a mess.

To answer your question, I don't know. I spend a lot of time at the gym and trying to occupy my mind with other things but it doesn't always work.

1. Tell your work! You may be surprised how compassionate and accommodating they'll be. I saw another side of my boss. He made anything I needed possible.

2. See her every day. If you have to move closer, do it. I moved a thousand miles and went remote for years just to be with her. Best decision of my life.

3. If she needs more resources than she's getting, get them. Don't try to do everything yourself.

4. Find a caregiver for yourself. You'll need one. If you don't manage that, then auto-care-give. This is a must. You can't help her until AFTER you help yourself.

5. Hold her hand, eat with her, watch TV, hang out, whatever. It doesn't matter what. It all makes a difference.

6. When things get tough (and they occasionally will), remember, this is actually the normal course of things. It would be worse for her if your roles were reversed.

Respect and love. You must have a wonderful mother to raise such a good child (proof: your post).

First of all fuck work. Your family comes first - you’re dealing with a once in a lifetime type situation and we only have our parents so long. If work or your boss isn’t OK with the level of flexibility and time off you need, they’re borderline monsters IMO. They should be willing to work with you and renegotiate your situation.

Also I’m really sorry. It’s a roller coaster ride of hope and you frankly don’t know where you’ll end up. It’s hard to know even week to week what kind of help you’ll need to give. One week may be normal and another all over the place.

ok finally some tips

Remote work - I worked from home and took full advantage of the flexibility. Up to working odd hours and napping when need be. My mom often was sitting in the hospital asleep for days. Really there would be nothing for me to do but work until she needed me.

Take family time - It’s sad to say, these times can be an opportunity. Be closer to your mom and family. Plan last minute trips as her treatment allows. Enjoy what you can from them. We have such great memories of my moms time with us towards the end with last minute house rentals where we just hung out.

Care for yourself - feel your emotions as much as you can. Journal. Exercise. Take mental health days. Do what you need to do to process. This includes coping with your feelings about mortality and death.

Get help - you can’t do it all. Seek support from other family members as much as possible.

Fulfillment in caring for those that need us - my mom felt awful being cared for by us. But I told her caring for someone with serious or terminal illness, while a lot of work, is a bit like caring for your child. You do it cause you want to and out of love. It’s fulfilling to give what you can of yourself to this person that’s given you so much. And we’ll all be there someday, it’s part of the circle of life. We will need our families support. We’re all interconnected and sometimes we’re strong and other times need lots of support.

If you take anything away from this is don't keep it to yourself, that never works.

Best of luck to your family and your mother.

> It has been really challenging going through the daily tasks at work

Was the same for me. I used to visit her one hour a day. I'd recommend spending time with your mother as it is possible but also making sure you don't neglect your other in-person social life. This can go for months or even years. If there are other family members living close, you should create a Whatsapp group and alternate visits if that is possible. And of course tell your company, they'll understand if your performance is lower than normal.

My best advice is to know that it is not easy, and you will be distracted by your fears and anxieties and worries, and it's okay, because that's the way it works. Seek any support you can find: there are groups devoted to all manner of helping people cope with disease and grief, etc. Seek a counselor who specializes in this sort of thing, seek comfort from friends and family, be honest about what is happening in your life: tell your co-workers and bosses and everyone else. Don't keep it to yourself, don't be afraid to walk through this darker time in your life with your soul more bared to the world than might be your usual habit.

I hope your mother recovers, and I hope you are able to be with her often and help her understand how much you love her. It is a terrible thing to love and be afraid as you love, but you can get through it one day, one moment, at a time.

But always remember to find people who can help you cope and understand how normal it all is to feel the way you do, whether it's professionals you find through medical contacts/referrals, friends or family, etc. Don't try to do this alone.

First off, obviously, nothing makes it "ok". It is tough.

Secondly, focus on if you are doing the thing that needs doing now, and if you find your thoughts on "what do I do to fix things?" or "what if...?", gently move your thoughts back to "what is the thing that needs doing now?" Expect to have to keep doing this, and don't be impatient with yourself. Just know that your thoughts will tend to wander into questions that are not answerable, so you will need to repeatedly shift them back to doing whatever needs doing at that moment, knowing at the same time that your thoughts will wander again.

Remember to tell your mom that you love her, of course.

Also allow her to talk about whatever she wants to talk about. Sometimes she may want to talk about you, not about her cancer, just so that she can think about something else.

If mom is living with your dad, he may need to have someone to talk to when your mom is not around, so be available to him to vent/rant/process his emotions as well. In this case, you mostly just need to listen without trying to fix things or have an answer, necessarily.

If you find your emotions getting the best of you, try to calm yourself of course, but also don't get too upset at yourself either. It's normal.

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.

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.

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.

* My partner told her employer right away and they were unbelievably supportive throughout the process, giving her PTO, understanding when she wasn't able to perform 100%, and always encouraging her to put her dad first. Not all employers are this great, but you may be surprised by how yours reacts

* We all practiced being in the moment, doing our best to enjoy each moment, especially the little things (e.g. lunch outside in the sun)

* There were ups and downs in his treatment and every "up" was an excuse to spend as much quality time together as possible

* We temporarily moved to be closer to him, both to help provide care and to spend as much with him as we could

I don't know where you are in your career or what constraints you might have, but if you can afford it my advice to you is to put your mother first always. Be transparent with your employer, ask for their support, and don't put up with any bullshit if it comes your way.

- I’m taking time of work. To look after her, but also my role as primary caregiver is impossible to combine with work

- I’m personally seeing a psychologist specialized in oncology. She taught me a useful self-care framework that consists of four pillars: autonomy, physical well-being, social support, and doing meaningful things.

- My mum is also seeing a similar person to talk about the disease, its implications and possible death

- My role as primary caregiver and only child is complex. We involved a mediator to set mutual expectations

- I’m using the time to learn how to take care of myself both physically and mentally. For instance, I’m experimenting with light therapy and nutritional supplements

- I am learning about cancer. This is sometimes emotionally tough, but I like that I can now better help my mother navigate the medical complexities. Cancer is also an interesting gateway into immunology. I recommend “Elegant Defense” by Matt Richtel

- I spent a lot of energy organizing professional care (e.g., nurses, food l). This means that my support for her now feels of a higher quality.

- I am helping my mum keep track of her medical condition over time. This relates for instance to pain, side-effects, complications etc.

- I am trying to figure out what she finds difficult from an emotional and energy perspective. I outsource this. She needs to focus on getting through the therapy.

- I didn’t read all the comments, but it’s very true that outsiders often don’t know what to do but want to help. Make a list of things that need to happen and share it with them.

I wish you and your mother lots of strength.

My email is in my profile; feel free to reach out and/or look in my comment history. Sorry I don’t have time for a more in depth answer right now.

I’ll admit none of my advice could really help for coping or staying productive, I did not cope well, and it’s only now 14 years later, as an adult, that I’m able to work through what was the defining moment of my life. I also was just recently diagnosed with bipolar type 2 which was extremely difficult to diagnose but is likely traced back to that period of my life.

The one piece of advice I would give that I think is universally helpful is to find a good therapist. Look for a CBT/DBT therapist who can help teach you tools to correct unhealthy mindsets. You have to 1) like them and 2) they have to do a good job at showing you how/why your thought process works the way it does.

In my case it wasn't particularly unexpected, she had previously been diagnosed and gone through treatments. The bout previous to the one that killed her had been difficult. She got through about 2/3rds of the chemo and told everyone that was it, either she died or she didn't but she didn't want to do any more chemo ever again.

That was very hard to hear but I know for me the way I thought about it was tangled up in the parent/child relationship.

I was blessed that she and I could talk about pretty much anything, and so we talked about her cancer and her choice to die if it came back. It was hard to hear but I think got to the point where I could see her side of it. She lived another 7 years after that. When it came back she was ready to go, and while I don't really think I was ready to let her go I could reflect back on our conversation and the times we'd shared and take some comfort in that.

It is a painful and stressful thing and you will get through it. But as with anything you will be remade into a different person by the process. It's okay to be angry at the world but know it isn't your fault or their fault (I said some horrible things to my Mom early on about how her smoking was to blame etc etc and was lucky to have been able to work through that[1])

Let her know you love her and support her efforts to get past this. So many more cancers these days have let people continue to live their lives longer than they would have. All I could do for my Mom was to be present for her, to listen to her, and to let her know that she had done well and I was glad to be her son. It's what I as a parent hope for my kids as well.

[1] Is smoking a cause? Sure. Is obesity? yup that too. But living your life is also a death sentence (good perspective from the book here on that) re-litigating your past choices when you're facing a situation doesn't change anything except make you angry. Accept the emotional release and moving on is so very hard, and so very important.

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

After learning about his terminal cancer, I didn't know what to do. I distracted myself with work not knowing how heart broken I was. Finally after two months, it took a very intense yoga class to break me open and let out the tears and face the grief of losing him.

As others have mentioned, talking to a therapist will help you navigate the feelings so that you can be more present with her, in whatever capacity you can.

I have such fond memories of the little things I got to do with him. The little big things.

take care of yourself <3

I don't know what I'd do in your situation, other than hope my employer was understanding and accepting that I would not be 100% for awhile. I'm very sorry you're having to go through this.

Let your employer know if they are empathetic, take the FMLA leave to set things up for her. Little things go a long way, like being with her during chemo sessions, cooking food that she likes and is palatable, being on hand to help her with nausea and other side effects, or even arranging distractions like a movie or finding her books to read.

Flexible bosses only get you so far IME. Family Leave is a good way to reassure to people that you still are dedicated to your job, but you have other stuff to deal with - and also that HR has officially reviewed and blessed your situation. It adds an extra level of 'validity' that can shut down speculation that you are just screwing off because you don't care anymore.

Our son was diagnosed a brain cancer at 4. He's 8 now, and really fine given what he got through. At that time, our daughter was 2. Our other son was born 2 weeks after the diagnosis.

My wife was in maternity leave, and of course, in this situation, there was no way I could continue to work.

My parents took care of our daughter during the treatments of my son. She didn't understand the situation so it was very hard for her, as she felt abandoned by her parents.

My son got 3 "standard" chemos and 3 highly dosed chemos. During each of the later ones, he had to stay for 2 weeks (at least) in a sterile room until he got back a sufficient immunity. Our baby couldn't enter the sterile room, so we alternated with my wife. One stayed with our baby in another part in the hospital, while the other spent time with our kid.

My company was really supporting to me. My colleagues decided to offer me paid days off. This is something you can legally do in France: give some of your vacation days to colleagues. All my colleagues gave me one day each, and this allowed me to be with my kid until I could go back to work. Depending on the relationship you have with your colleagues, maybe something like this could be worked out? For the record, I got another paid month, thanks to the health insurance.

Friends also helped by preparing us some meals, and they also gathered some money so we could have a nice WE in family when we got out of this situation.

1.Second opinion regarding treatment protocol (especially for second line treatment or beyond, where things tend to be a bit less settled) 2. Genetic testing that looks for treatable anomalies. (e.g., FoundationOne) 3. Disabled parking placard (if your country has this) 4. DNR. (Do not resucitate order) 5. Power of Attorney (for matters both medical and financial) Treat anxiety/depression. (Remeron, for example, helps with anxiety, depression, sleep, and appetite) 6. Protect patient from misinformation 7. Prophylactic treatment of pain 8. Prophylactic treatment of nausea 9. Prophylactic treatment of constipation (stool softeners are not always enough) 10. Always request STAT orders from doctors (to reduce time spent waiting around for tests and for test results) 11. Grab rails/ support rails for bathroom/shower + shower chair + walker 12. If relevant: consider upgrading medical insurance during open enrollment period. 13. Will. 14. TV for bedroom. 15. Make sure bed is as comfortable as possible. 16. Write down questions for oncologist prior to appointment. 17. Protect patient as much as possible from idea that she is burden, from natural expressions of impatience or frustration, from arguments etc (since these can have medical implications in terms of willingness to endure necessary treatment) 18. Caretaker needs to be taken care of too. 18. Avoid delays in treatment as much as possible. 19. Vaccinate against flu and covid

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.

This happened to one of my parents at the beginning of my career but I was a contractor and had to make ends meet in the new city I had just moved to. My parents were of the position that they raised me to do that specific thing and wanted me to do that. As far as focus, this wasn't difficult for me except when there was news. More than a couple times I did have to abruptly leave one city and transit to the other where my parent was in the hospital. There was no certainty about my job but that part did work out for me, but it just as easily could have not. For me, the separation allowed for more rationale prognosis because the original diagnosis was obviously a death sentence (your situation may be different and it wasnt specified in your post) and both me and my afflicted parent understood that pragmatically, but the people there through the whole process stuck with the hopium that a miracle would happen. They couldnt see the subtle deterioration day by day, but me being there every 3 weeks made the snapshots much more obvious. “Yeah spot on diagnosis doctor and the entire internet and all studies that omit how the few percent that do make the 5 year survival rate are not having a good time”. I think its easier to focus when being practical, like you dont need to be a nihilist to the people around you during the process but it is possible to skip all the stages of grief and accept it while keeping a positive outlook. Its not like the people that didn't beat cancer weren't strong enough, its just that a random direction of metastasis disrupted a crucial life process or not. So the stages of grief will be the most distracting if reality will not be accepted, but you can steer the energy positively without distorting reality.

I have to admit it's been difficult to focus on work. Much of the time I can't concentrate well and I'm not nearly as productive as I was. I would have taken more time off if we had single payer health care in the US. I did tell a few people at work so they would understand when I seem distracted or end up taking more frequent breaks throughout the day. My wife is putting in a lot of effort to stay as healthy as possible through this. She walks a mile or two every day. Sometimes a neighbor will walk with her, but often they aren't available and I do. I think what I'm trying to say is talk with a supervisor, or someone at work who notices what you do. Let them know how this is affecting you and that you will not be able to give 100% for the next little while. Best case they'll say do the best you can, and give you some slack. Worst case you end up looking for a better job. It's a good market to be looking.

Also, I think it's important to talk with someone about how you feel. There may be a social services department associated with the oncology department of your local hospital. I am currently attending a caregivers support group run by a social worker from the hospital. It's very helpful to be able to talk about my own emotions to someone who knows how to listen and with whom I feel free to express myself. If you can't do that the whole experience ends up much harder because you're trying to support someone else emotionally, while also shoving down your own upsets. I've been surprised at the support services there are for cancer patients and families. We even found a house cleaning service offering discounts to cancer patients.

It's a very difficult thing to endure. And chemo only gets worse as it goes. Line up some support now so you don't end up burned out or depressed as it drags on.

Edit: I just noticed I was assuming you live in the US, as I do. If you don't, and health care rules in your country are more rational and compassionate, some of this may not apply.

I am not sure which country you are in, but there might be government programs that partially subsidies a personal carer for your mother. I believe UK has it. It might be worth looking into these programs to hire someone (could be a family member) and offload some tasks from you.

I tend to compartmentalize quite heavily, I have friends at work I explained it all to - and one of them lent me some extremely emotional graphic novels that helped me get a lot of my weeping out on my flight over to my family then I could focus on emotional and physical care. I kept working up until the day of my flight and buried myself in work - I'm sure I wasn't the most efficient employee during that stretch but it helped me to surround myself with a problem space that I could solve.

The difficulty with being a developer is that we can solve so many insanely weird and obscure problems that it becomes habit forming much to the detriment of the health of our relationships and our mental health during existential crises. When a family member has cancer you can assist with everything that's do-able but the actual solutions come from the doctors and pure fucking chance - so my best advice to cope with the issues is that you can help in the small ways and it's immensely appreciated. Cook meals, play games (when my dad was sequestered for surgery we, the family, were sent home since it was a long operation - he had his smart phone and was changing the color of the smart bulbs in the house when conscious) and listen to requests.

If you're feeling overwhelmed then talk to your manager and go on bereavement leave or else just take some unpaid time - if your company isn't the absolute worst then hopefully people above you will understand that you just need time to sort yourself out. If you need to quit then do it - but avoid it if you can because that can just be added stress.

I don't know if any of this was helpful - but I hope everything goes well for you, it's an extremely painful process (he types while tearing up).

I don't know if there's any good advice for coping with this stuff. The only compensation I can offer is you're probably at the worse part now - pain and uncertainty is the worst. If a person lives or if a person dies, it's done, it's easier.

Words of my father - "Dying quickly is easiest for the person dying and hardest on their loved-one. Dying slowly is hardest in the person dying and easiest on the loved-ones (because they can say good bye)". I don't know if that's true but it shows there are no easy answers.

I found the book Being Mortal by Atul Gawande to help put some things into perspective. I’m not suggesting things won’t work out but it can also be hard to accept what the evidence is realistically showing you when things are personal so it is good to be prepared; I think it’s a book worth reading by most everyone anyway.

As far as dealing with the every day I would recommend having a daily routine which is emotionally resetting such as meditation, exercise, and some hiking in nature sprinkled in (at least that’s what helped me).

If things don’t go well I would also suggest making sure you have and maintain social connections and seek out a therapist if needed; I did not do that and I would strongly recommend against it. Oh and do take time off even if you think working through it is initially the right move.

For context my experience wasn’t with a family member but none the less someone I was quite close with.

Hang in there.

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 suggest talking with a competent therapist experienced helping people in similar circumstances.

“Similar” because your grief is uniquely yours, yet there are therapeutic strategies that tend to help in a broad range of commonality.

One of those, which I am touching on here (my beloved has spent an adult life as a clinical social worker) is caring for the caregiver.

To be present for your loved ones, you have to be able to be present. Your healthy grieving is important for your loved ones well being.

Lastly, from decades as a “hospice spouse,” fighting to the end is not always the right choice for everyone.

I am going to die. You are going to die. Everyone is going to die.

For some people how they live matters more than how long. And there are people for whom fighting to the end is part of how they live.

Sometimes the hard thing is giving a loved one your support for the choice they make.

Again, my condolences on your loss.

I say this as someone whose child survived pediatric brain cancer. Kids do so well because they are eternally happy and optimistic.

“You Don’t have to suffer” by Judy Tatlebaum is a good book and the audiobook is on audible prime.

Now if your are involved in day to day care things that helped most for us were meal trains and having someone to help with our other kid. Another friend sent their cleaner to our house every week. That was a godsend. Grandparents weren’t especially helpful b/c too much emotional baggage.

So see if family and friends can share caring for your mom. If not consider hiring help too. Sometimes the govt has programs.

I have a boy who is a 23+2 prem. Who spent around 6 months in the hospital, had brain damage due to the trauma, blindness due to retinopathy of prematurity, severe skin disfiguration of the lower abdomen due to aspergillosis. He's non verbal and whilst mentally a lot easier to deal with than my other kids it is quite physically demanding.

My wife was diagnosed with cancer a few years back, aggressive, but was treated and it seems to be in remission though the side effects of treatment are still taking a toll on her (severe joint pain mainly).

I injured myself a few months prior to my wife's cancer, spinal disc related, was due to have surgery a few months after my wife's cancer diagnosis and ended up putting it off until the pandemic hit and then put it off again until last August.

Suffice it to say, the surgery was not entirely successful and I'm at the point where as a 36 year old person I'm not able to squat, stairs are difficult and it feels like my entire nervous system is on fire constantly. So much that when I have a good day and get used to being pain free for a while, that when I slip into a bad day, I'm just completely irritable and have lost all patience. As such, caring for my son has become borderline impossible without help.

I won't say it's easy and let's be clear I have to be honest and say that this is not about you as much as I know this impacts you and you will feel the mental pressure. The important thing is to do as much as you can for your mother whilst keeping her distracted with things to do.

I took very little leave as I also needed the distraction too for my own pain and just so I didnt have to process my families trauma at that time. My personal opinion is having an idle mind is the worst thing.

Things will eventually change for your mother and hopefully it is for the best. Take leave for the day after chemotherapy and ask for help from other people too (siblings, in laws, friends) and this doesn't have to mean actual care for your mother but perhaps other things in the house that need taking care of (childcare, cooking, etc).

Some things I have noticed to helped me:

1) Exercise - going to the gym regularly, even through mental pain, helped me a lot in the long run

2) Eating out - I started eating out more often and having nice, cooked food helped a lot

3) Working - my employer was very understanding and tbh I found it actually helped me to work, as allowed to take mind off things, though you could be different.

4) Hobby/gaming/Lego

It’s weird when people are having conversations about dealing with a home purchase or finding a daycare then when asked “what have you been up to?” Saying “dealing with a family member who is/may be dying” and then they say “oh wow, sorry to hear that let us know if we can be of support” and knowing they don’t really mean it and are just kind of trying to move on to an easier conversation.

It’s not an easy thing to go through.

Chapter 96 in Ministry for the Future oddly summarizes and validates my experience almost perfectly, for whatever that's worth.

We all don't really know eachother but HN is a community and clearly its here for you.

You didn't say which type of cancer.

There is a company called Arvinas that is creating a new class of drugs that tags receptors for destruction by autophagy. Interesting and seemingly more effective than standard of care therapies. However, their targeting seems to be specific to certain mutations on these receptors. Have a look at the investor notes and presentations on their website for more details.

Go to her oncologist appointments.

Chemo sucks. Make sure your mom is doing everything nutrition and fitness related she can to be otherwise as healthy as possible. Check out the recent research regarding fasting + chemo. Oncologists will wince the first time you mention fasting. Explain that you’re not telling mom to stop chemo, just that you’ve read about studies showing good results when combined with chemo or radiation.

If appropriate for her type of cancer, push for genetic profiling.

Find out who is doing immunotherapy for her type.

Those are of great help is many ways - they can tell you what to expect during various stages of the treatment, long term issues, clinical trial information (may be important if you're eligible), as well as support and success stories. People are always super helpful if you ask them questions.

In addition, if there's an inherited risk for the type of cancer, get yourself tested at the appropriate age.

My grandmother was given a diagnosis of 3 months, after postponing one chemo treatment, she lived ten years after that - though not in remission and in the later years in constant pain.

My advice is just spend as much quality time with your mom as possible and just be there to listen.

As for coping from her side - be understanding, encouraging and accepting. If she loses hair, or gets bad skin - don’t make it a big deal.

One of the ways this can be made worse is if you stop engaging in sufficient self care. Make sure you continue to get some exercise, bath daily, stay hydrated, eat good food, get enough sleep, and stand in the sun every day (in many ways humans are just more complicated house plants). This won't make everything better, but not doing it can get you depressed quite quickly.

You should first accept that your work output is probably just going to lower and forgive yourself for it. Ask for help with from friends, and if you can afford it consider buying help with some of the daily tasks and chores. It sounds like this is the first few days, in which case I'd guess this will be one of the low points of the experience. It probably won't always be this bad, but you should be prepared to feel this way several more times throughout the process. Try to understand the level of support you need during this time so you can ask for it again.

If you can find someone who will lend you an ear outside of your family, talk to them about what you're going through. Talking through your emotions will help you process them and decrease how much they interfere with your day.

Conversely, within the family you probably want to minimize conversation about your mother's illness and talk more about happier things. This won't always be possible, and your family members may need you to be their ear while they cope, but try to watch for conversations repeating themselves. People often get into grieving spirals where they rehash the same sad points over and over; engaging directly isn't helpful, you want to switch to talking about happier memories.

It's not clear to me how good or bad your mother's diagnosis is, but if things turn for the worse I recommend you and your family read the article How Doctor's Die[0]. This informed my family on how we'd handle her treatment, deciding not to go for maximum intervention, and I'm so happy we did. Both for her, and for us.

Best of luck, remember, this too shall pass.

[0] https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...

It is basically an optimization problem.

Provide human comfort.

I hope you and your loved ones find some comfort in this difficult time.

Taking paid caretaker leave for a spouse wasn't an option in my state, and my employer only offered unpaid protected leave; since we were losing my partner's income as well, that also wasn't sustainable, so I worked through it and used PTO as necessary. I was beyond fortunate to have an all-time best of my career manager when this happened; she took everything in stride, accomodated everything as I needed it within her power, rallied the team to cover in emergencies, and completely unprompted was the only person to send my partner flowers in the hospital — she even tracked down the room number herself so not to bother me.

To care for my partner, I took on all of the household responsibilities — we didn't have family nearby, and this took place entirely within the pandemic, so long-distance travel wasn't an option for them - and also all the transportation for infusions and follow-up appointments. I spent as much time with them as I could, worked from home (pandemic helped there), kept them company, cleaned up after them.

Beyond that, there's not much specific care you can provide for chemo side effects, and the effects can be unexpected. Make yourself available to them and set expectations with co-workers (if you can't take leave) and anyone else who relies on you that you'll need to be interrupted frequently.

Maybe the best thing you can do for them is ensure all end-of-life paperwork is in order. Make sure there's a will, a living will, advance directives, make sure they're all signed/witnessed/notarized, get a lawyer if you can afford it (especially if your employer can provide or refer one at a discount). Do it now, because you don't know when or if this will take a turn — treatments or cancer symptoms can start to erode their metal lucidity — and by that point it might be too late to get the signatures necessary.

However stressed you feel about things now, if cancer kills them, it will be so much more incredibly worse. Center yourself in the present. Put aside plans for the future and reconcile the past, now, because you can't do either of those when they're dead.

The harder thing on myself is getting any motivation to work back after the end. Whether that's the cancer going away for now or death, this will permanently change your relationship to work, especially tech work where you're exposed to or enable financial inequality.

I don't think anyone on here can help you with that because your response is going to be so entirely and uniquely your own that you'll have to find your own path onward. Try not to do it alone, try to find a community of cancer caretakers and survivors, but understand that being a caretaker will forever set you apart and change your perspective on making money, IPOs, million/billionaire founders, startup culture, blah fuckin blah.

My dad was diagnosed with prostate cancer when I was 18/19 (freshman year in college). My mother was diagnosed with lymphoma when I was 21/22 (senior year). Both of them went through some combination of chemotherapy/radiation/etc. - I honestly don't remember every detail. Both went into remission for a period of time.

My mother was then again diagnosed with lymphoma (it came back) during my mid 20's, went through treatment, and recovered (still in remission).

One last lash of cancer hit her in my 30's but was quickly resolved through a single mastectomy.

It was my mother's second round of lymphoma that strained us all the most. She felt like garbage for what seemed like an endless amount of time. That coincided with an extraordinarily period of time at work in my early-ish career. I don't recall telling my boss at the time. She was a wreck, we were a wreck. I wouldn't wish that combination on anyone.

So, I was mentally and emotionally drained because of my mom's situation but didn't do a good job articulating that to anyone. I was performing poorly at work but don't think I mentioned any of this to my boss. I am sure I seemed like a wreck and certainly performed in various aspects of life as if something was off.

Looking back at it all, I have three points of advice: 1. Tell people about your situation so that they aren't misinformed about your overall state (good or bad).

2. As cromulent said, use the help that's offered. You probably aren't as functional as you want to be. Let people help you.

3. Finally, don't think about telling people "not to worry" about you. They will anyways. The people who will ask you questions and support you are the people you want nearby, even if you don't feel that way some or all days. My hunch is you'll ultimately feel better the more you let people in rather than trying to find ways to keep your guard high.

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.

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.

What I decided, very early in her illness, was "screw work". I told them the situation, and said that I was going to be visiting her 2 days a week (I also had a home life to live, and life has to go on around cancer). Turns out they were extremely flexible and basically said "just let us know when you need to go, and then go". Turned out I was able to work on trains/buses and even from her house, if she dozed off, or was busy with other stuff. One thing I noticed is that, even though 9 months is short when it's the end of someone's life, it's an extremely long time to sit and watch.

To brighten things up a bit: you can't (and shouldn't) be sad all the time even if you or someone close to you has a terminal diagnosis. It benefits nobody. Graveyard humour is sometimes the funniest, because it's so fucking black sometimes that laughter just forces it's way out.

Mostly I just acted like there was nothing different. She thanked me for that many times later in her illness. She was constantly aware of the cancer, and just wanted to be able to think about anything else. My goal was to be there when I could can. Just hang out. We'd talk about pretty much anything except her terminal cancer: my wife, our dogs, her husband and 6 month old baby, what I was cooking for lunch...

She never accepted that she was dying, right to the end. See, she was diagnosed right after giving birth. I wish she did accept it, and try to deal with it, but as someone pointed out (the Chinese reference) perhaps for some people, you cease functioning once you realise it's "game over". But the outcome was that she didn't even leave behind anything for her son, who would never remember her. No recordings, videos, letters. Not a thing. She couldn't bare it.

Anyway, thing is, some cancers are very treatable. Some go away for a few years and come back in a more lethal form. And some just kill you within a few months. In her case, it was really obvious that she had the latter. She wouldn't discuss it with her own oncologist. Her husband had to carry all of that - every decision was left to him. She abdicated. So that brings me to the last part: you need to be there just as much for the satellites that orbit the cancer, as for the person with the cancer. They're all going through the meat grinder. My 94 year old father never thought that he's have to lose a child (he married late, and assumed he'd be the first out of our family to die). My mother was my sister's her best friend, and they saw each other daily. It was extremely tough on her, so I called on her a lot too.

Three years on: life just goes on. Her son is in pre-school. My father is still alive and in relatively great condition for his age. My mother lives for her grandchild. My brother in law has a girlfriend, which is great for him, and everybody is happy for him.

* First few days I was completely helpless and had no idea what to do. The first thing to do is regain composure and realize that in such situation, pity, depression and sadness are a luxury you simply cannot afford. It sounds cruel but trust me, this is exactly how it really is. Things are no longer about how you feel but about life and death.

* Yesterday's problems are history - whatever you felt was missing in your life - friendships, relationships, feelings, desires, dreams, vacations and all that are also luxuries you cannot afford. At least in the beginning while you adjust to the situation. Play your cards well and these things will come back eventually. With the first two points, work becomes a necessity, like breathing - you have to do it, whether you feel like it or not.

* Know your friends and your enemies: Who you can count on, and who you should stay away from. Thankfully I learned who they were well in advance and I didn't have to work this one out. Just to give you an idea - my second cousin. His best quality is that he will do everything to his ability to help when you need to. He is in a somewhat similar situation so we have this sort of unspoken and unwritten rule - whoever needs a hand, call, no matter what time it is. Whether that's driving someone to the hospital, carry furniture, go to the pharmacy - whatever it is, call and never ignore incoming calls.

* I know far too well that as a developer, biology may not be your strongest side. That said, I read everything there was to read about this type of cancer I could find - books, articles, papers. Not about trying to cure it yourself, just so you can learn how to spot subtle things that may happen and patients would ignore and won't even remember to tell their doctors. This helped on multiple occasions. In addition make a journal related to that in order to keep track of things, keep notes, changes that happen over time and all that. Hospitals are likely doing it the same but it's never a bad thing to have a copy.

* Whatever spare time you have, you need to have it perfectly organized. I know it's easier said than done, but you have to have as much of your schedule cleared up.

* Last one might be a bit odd but hear me out: watch your own health. Exercise, if you are overweight(like I was), fix this as soon as possible. You can't help someone if you are helpless yourself. While it may seem trivial, the simple philosophy to follow is to hope for the best and prepare for the worst. Generally a good life philosophy but in your situation it's a necessity before anything else.

As I said, I can sympathize with all this, and while I don't say this often, I have my email in my profile, feel free to hit me up if there's something you'd like to know or simply someone to talk to.

Best of wishes.

My little girl had heart disease and a rare genetic condition, she was very sick and spent 7 of her 8 months in the ICU. Her condition was obviously chronic, my wife and I assumed her path would follow that of other children with the same/similar conditions: few weeks/months in the ICU, a few surgeries, then as they slowly get bigger + stronger, they have less appointments, less hospitalisations, more normality, etc, but still chronic, and still have very specific care needs that would affect our life, and our job/work for the foreseeable future.

I worked everyday from her ICU room, except for two weeks I took off around the time of birth. I was saving the remainder of my PTO/sick leave for when we were at home, and mom returned to work. Working in an ICU meant I was there in body, but not in spirit, semi glued to my laptop, as we're told my child has a genetic abnormality, a brain bleed, neuroblastoma, etc. One of my biggest regrets is working during that time. She passed away in May, I was told I was entitled to X bereavement days, and then X FLMA days. My wife and I went on vacation for 2 weeks, and I think I had about a month off total. My FMLA leave was denied (after the fact) because it doesn't cover death, only serious illness. I think bereavement leave was 3-5 days, so the remainder was personal PTO. Health insurance is through my employer, so I obviously had the "if I quit, she'll be uninsured, what if she needs another heart surgery, etc." looming over my head. So I just shut up and got on with it, and honestly, I think I'll go to my own grave with it being my biggest regret. Just my 2c.

Spend as much time as you can with them, reminisce about your life together, avoid anything negative, decorate their room (if they're hospitalised) with personal things (an xmas tree, new year banner, family photos, etc), play games (if able), play music, pay some bills (if they still have a mortgage, pick up a payment or two), speak to your boss/HR, see what you're entitled to, TAKE IT ALL, and apply for whatever protection you can (FMLA, etc), consider if quitting and being unemployed is a possibility, take time for yourself, your mood will affect their mood, I out-griefed my grief councillor, but I think I still would like to talk to another/or therapist when I find a suitable one, avoid drinking/drugs in excess, listen to their favourite music, buy a voice recorder and have family record music, prayers, songs, stories, books, etc. anything to lessen the beeps/alarms. Wear comfy clothes/shoes, drink water, they'll still worry about you (their child) so make sure you try to take the best care of yourself, too. Tell them you love them. Try and find healthy habits. Skip the elevator, take the stairs. Cook meals, possibly set up a meal train (mealtrain.com). I guess most important, is treat them normally, being on the receiving end of sympathy gets overwhelming fast. Actually, probably most important, laugh. My wife and I made fun of everything we could, even the sad/bad stuff, joking/laughing lessens the blow.

I would say just be with her and help out where you can, be normal, do normal things (as much as possible), chat. Maybe cook some food to help out, pick up the house, etc. Even though my mom can't eat much anymore, I've been taking food for my dad, trying to keep his energy up, doing dishes, small stuff like that along with the occasional big task. I hope treatment can bring remission for your mother but you should know now that if it doesn't or if it doesn't last, cancer will rob her of her dignity in a very ugly way and you should prepare yourself for that. At the same time stay hopeful. My mom got much longer than I thought she would when first diagnosed.

Anyways, think about what you would want if you were confronting what your mom is. Probably after the shock wore off you'd realize you wanted meaningful experiences. Not necessarily big, just meaningful. A trip to a bucketlist location can be meaningful but so can a sleepy day spent inside or a surprise visit.

>But its life I suppose and we have to accept it and learn to deal with it. I am just learning to , and am looking for some direction here, so I can do my best to balance a job and take care of my family through this time.

Well if the balance has to change a bit then it has to change, that's really all there is to it frankly. You just have to be honest with yourself about it. It's okay to cry in the parking lot, just give yourself a few minutes, blow your nose, wipe up your eyes and then you go in and do the job. Or if you need time off to care for her, then take it. Anyways the thing about life is you don't have to do anything except live it and it's the same for death too. You'll figure out your own way through it as will your mom. One last thing, don't feel guilty about doing other things, going out to the bar and having a good time or seeing a sports game or all that normal stuff. It'll help you a lot and it'll help your mom worry a little less about you, plus it gives you something interesting to talk about. She's going to be living in cancer world for a while and she'll get sick of talking so much about it.

Anyways my situation may be drastically different from yours. But since you're coming here you're probably struggling with some degree of self-doubt about how to handle this, don't worry because you obviously love your mother and so you'll find the ability to do what you have to. And it's all still fresh so be easy on yourself now - you may have to be hard on yourself later.

I wish your mother all the luck in the world with her treatment.

I lost my wife last month to an aggressive form of lymphoma. Se was diagnosed in January and was dead by October. It was a shocking experience for me, and for her of course. There was so much she wanted to do and now she isn't able to do any of it. That is the part that hurts me the most.

There is so much good advice in the other comments and I may end up repeating them, so I apologize.

I was the primary care giver for my wife and I was able to work for a while during the first few months. This gave me a sense of normality in an extremely abnormal situation. We both assumed the various treatments would work and we tried to live our normal lives. Looking back, this was a mistake. I should have taken leave right away, just to remove the noise of daily stand-ups, shipping features and the usual flow of working as a developer. If I had only known Melanie only had nine months, I would have been more in the present.

This is not to say you should smother your mother with attention. There is a balance. I wish I wouldn't have had other non-essential things filling my mind so that I could have just been present, even if it meant just being near, reading a book, programming on things that were interesting but non-pressing.

I don't know your mothers mental state. We all want to say things like "You will get better" or "You are so strong and brave". You might get fixated on finding cancer trials and try to manage the treatment. This isn't a bad thing, but don't make it the focus of your relationship.

Cancer is brutal and cruel. Our technology has made great gains, but there is no guarantee the cancer will go into remission or be eliminated. The treatment may extend life, but it will also cause severe distress to the patient. Your mother will probably get a port installed into her chest. It will be a constant reminder to her that she has cancer. Treat her with love and as normal as you possibly can.

She will have mood swings, feel hopeless, hopeful, get depressed, get angry, be euphoric, get crushed by reality and more. It is a roller coaster.

Be sure to take care of yourself. Get rest, exercise, eat well, meditate, enjoy nature and beauty. Share your emotional state with friends. Be open and receptive to feedback from those you trust.

Your mother may get better and I really hope she does! She also may not and this is a sad fact. Let her make decisions about her treatment if things aren't looking good. Figuring out how to maintain quality of life is important.

No one wants to hear it, but plan for palliative care and hospice before things get too bad. We don't have to suffer and be in pain as we near the end of life. Hospice is so important and I wish I had done a better job noticing the signs of pain and end of life earlier to make things easier for my wife.

I have so much empathy for you that I am almost in tears. I wish the best for for you and want you to be strong. What you are going through is one of the hardest things you will face in life. Please feel to reach out to me if you ever need to talk about anything.

In our case, she seemed to do very well with the chemo, all things considered. I had deep fears of how much it would wreck her, and it did take all of her energy for about a week and then she would start to get it back and then get chemo the third week and it'd start again. The hair falling out was a huge identity shock and I think brought some embarrassment/shame—getting a wig seemed to help. We also felt grateful, in a way, that it was happening during covid, because then there wasn't a lot of social pressure to go outside to see other people.

One thing that somewhat came as a surprise: someone having to do all the things in the family that she would normally do. My mom has done a lot of the cooking and cleaning of the house and paid bills and such. When she was bedridden or exhausted for the week, there were a lot of things that needed to get done but not many of us knew how to do them. So, as others have suggested, taking help to get things done or sharing amongst your family to step up and do them can really help keep things going, so that other things don't start falling apart.

The other main thing I noticed was how people in the family may react differently to it, some feeling more afraid, some more angry, some more helpless, some more strong, some more sad, some more empowered, etc. For some reason, I didn't feel too much fear, as I think I believed she would get through it and that most was taken out with the surgery, and I also tend to feel stronger and more focused in crisis situations. Others in my family reacted differently and so I found myself trying to be there for them as well, including people in my extended family for whom I wasn't traditionally the contact person. So, while it may be impacting you and your mother a lot, it may be impacting those in your extended family and even family friends, and not necessarily for you to help them, but just to remember that it's a team effort to try to fill in all the roles, and it's ok to give help and it's ok to receive help in these times.

Lastly, I'm just really grateful you reached out to HN to ask for help on this. I don't know what if anything that I said will help you. I know one of the things that helped me the most when I found out she was diagnosed was crying into my friends arms and him telling me that his dad had also struggled with cancer for many years. I think before that moment, I, for some reason, assumed not that many people had gone through this. After opening up and sharing with him and others, I heard more and more how unfortunately common cancer is. In a way, I realized that I'm not alone in experiencing this and that more people cared about me and my mom than I had ever imagined.

The first thing I can say, and the one thing that I would absolutely like you to remember from my comment, is that everyone's experience is unique. Your difficulties would be different than others', but also you will most definitely find many other things much easier than what you might have been warned to be. Therefore the most important thing is to stay neutral, even if being optimistic is too much to ask for at the beginning, and try your best to experience your journey as it happens rather than worrying needlessly about your future.

There are two important things that you may want to provide:

#1 is access to good healthcare. Cancer treatments can get quite expensive, with scans, chemotherapies, radiotherapies, drugs, emergencies, etc so financial security is definitely an important consideration. Another element of providing a good healthcare to your close one is finding the right professionals. In my limited experience, it seems to me that from surgeons to oncologists, people are specialized further in their fields so it is even better if you can find those who are specialized in treating the type of cancer your mother has. You may start with the word of mouth, and follow the pointers you have collected. For instance, I have looked at (a) the number of papers they have published and (b) the number of papers they have published on the type of cancer my mother had. Perhaps not the best way, but it was an improvement over making a blind choice. Last but the most important thing is how comfortable you feel with your doctor(s); can you reach them (or their secretaries) when you need during an emergency? Do they make the patient feel good, comfortable, and optimistic about their treatment?

#2 is providing them comfort. Cooking, cleaning, shopping, having conversations with them on a range of topics from their treatment to their daily lives, giving them massages, or even simply being around them so they won't feel lonely. I see that having a job, this might be a luxury that you cannot afford consistently. Cancer takes its toll on the close circle of the patient too, so please make sure to not spread yourself far too thin. It's better to provide the best of your abilities consistently than to burn out midway; but whenever you feel you cannot, do not hesitate to seek help from friends or professionals.

Also, save every lab report, epicrisis (discharge report), etc on cloud and make sure is accessible to everyone who is helping the patient. Informed decisions, whether taken by you or the professionals, require information.

Things to stay away from:

- Alternative medicine; please trust your doctor, or find one that you can trust.

- Connecting with other cancer patients can provide great support and comfort to the patient, but it might also hurt their morale to hear the occasional bad news, or to be subjected to the constant background radiation of "living with cancer" conversations. The solution is to be as picky as you are usually in having friends, and not just to connect with any cancer patient that you come across. It is also okay to stop seeing those who, intentionally or not, make you feel worse than you did before you engaged with them; do not feel obliged to act like a professional counselor.

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It's hard to recollect everything that matters, so if you have any questions or would just like to have a chat, feel free to reach me by the email address on my profile. Wishing the best for your mother, for you, and your family.

EDIT: Even reading some of the comments here talking about how we all are eventually going to lose our parents and loved ones is an example of how not to approach this... There are many success stories, but the ones that you hear the most about from your friends and the media are the ones that did not go so well. Many cancer patients are indeed hiding their condition so not to be subjected to the pitying looks and the barrage of questions.