Ask HN: Coping with cancer in the family

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.

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.

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.

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.

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...

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.

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).

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.

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.

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

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.

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.

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.

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.

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

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.

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.

- 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.

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.