I am a software developer just like many users of the wonderful HN community and an ardent HN user myself for around 7 years . It has inspired me to pursue software Dev/Tech as a career as well as a passion beyond the office. However , today I come to HN to seek your thoughts on a non-tech related topic. My mother was diagnosed with cancer a month and half back and after two surgeries has started with the first round of chemotherapy. It has been quite a tough last few days ever since the chemo started with the common side effects of the treatment as is known. It has been really challenging going through the daily tasks at work, and am honestly finding it quite difficult to cope, seeing my mother go through this. If anyone here has ever or is going through a similar situation , I am just looking to seek some answers, on how you cope(d) and manage(d) your work and day to day schedule , and how / what you did to care for your parents. I really wish no family would've to ever go through this. 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.
[+] [-] elt|4 years ago|reply
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.
[+] [-] kortilla|4 years ago|reply
From someone who has been in a similar situation, drop that attitude before it poisons all of your non-serious relationships with other people. There are more categories than “friends who will drop their life for you” and “everyone else”.
[+] [-] CobaltFire|4 years ago|reply
That absolutely includes reading Meditations. My copy is dog eared and has many notes written in it.
[+] [-] lr4444lr|4 years ago|reply
[+] [-] agumonkey|4 years ago|reply
Take care
[+] [-] 999900000999|4 years ago|reply
It feels like it does a much better job than modern self help books.
[+] [-] missedthecue|4 years ago|reply
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.
[+] [-] jacquesc|4 years ago|reply
Goal is to live as normally as possible. I super appreciate all the support of my friends and family, I just don't want them to treat me too differently.
[+] [-] collaborative|4 years ago|reply
[+] [-] zrail|4 years ago|reply
Yes, please always remember that there's a person on the other end of that chemo pump. It's dehumanizing to just be a cancer patient in a chemo chair for days on end and to be constantly on the receiving end of sympathy.
[+] [-] johnwheeler|4 years ago|reply
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.
[+] [-] jxramos|4 years ago|reply
It still strikes me when I hear the etymology of compassion, - com : with - passion : suffer
basically to suffer alongside with which is much more profound than any soft warm fuzzy mental state, suffering is a physical state. You suffered alongside your mother and that is truly noble.
[+] [-] papa|4 years ago|reply
Having witnessed and supported other loved ones who subsequently succumbed to cancer, I’ve learned to appreciate all of the recommendations laid out above and not underestimate time or cancer.
[+] [-] truetraveller|4 years ago|reply
This may be a little intrusive, so I apologize in advance. I'm curious to know if religion, for you, plays a role in being kind to your parents? As a Muslim, my religion strongly encourages us to be extra kind to our parents.
[+] [-] yuhdam|4 years ago|reply
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.
[+] [-] gwbas1c|4 years ago|reply
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.
[+] [-] ixs|4 years ago|reply
Go on the internet, figure out who/which place near you is the predominant expert on that specific cancer and go there with your family member for a second opinion.
I am based in Europe and do not have US numbers, but you can look at statistics and see that the treatment success at hospitals focussed on cancer treatment is noticeably higher than at general hospitals who treat cancer amongst other cases. Regardless how long that trip takes or how complex the logistics are, it's worth doing.
All the best to OP and OP's family. The treatment takes a while and takes a lot out of people. It's going to take time to recover. Take that time, it's important.
[+] [-] andutu|4 years ago|reply
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.
[+] [-] swat535|4 years ago|reply
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.
[+] [-] macdamaniac|4 years ago|reply
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.
[+] [-] Vanderson|4 years ago|reply
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.
[+] [-] dcminter|4 years ago|reply
[+] [-] jimt1234|4 years ago|reply
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.
[+] [-] byteCoder|4 years ago|reply
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.
[+] [-] sswezey|4 years ago|reply
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!
[+] [-] somedangedname|4 years ago|reply
Good advice! My friend lost his mother to cancer this year. Not taking more photos and videos at the start of her illness - when she was most like herself - is one of his main regrets.
[+] [-] rimeice|4 years ago|reply
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.
[+] [-] kubawolanin|4 years ago|reply
[+] [-] floam|4 years ago|reply
[+] [-] diskzero|4 years ago|reply
[+] [-] cromulent|4 years ago|reply
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.
[+] [-] Vanderson|4 years ago|reply
It took a long time for my father to ask for help, and I could have been helping sooner.
[+] [-] trynewideas|4 years ago|reply
Also, if you're someone reading this and considering it encouragement to say "if there is anything you need, just ask", please don't reach for that first.
Doing so puts more work on the caretaker to plan and manage work for you to do — the caretaker then has to take care of you, too, because your offer to help is also your attempt to be, or at least feel, useful in the face of something intangible where you're functionally helpless. Multiply that by 5, 10, 20, 50 depending on the size of the caretaker's social circle and just MANAGING the requests to come up with things to do to help is a full-time form of caretaking that pulls them away from taking care of the person who actually needs it.
If you truly do want to help, identify specific things, plan the work yourself, and offer that plan such that all that's needed is a yes/no answer, and take whatever the answer is guilt-free — and be prepared for it to be no, and to live your life content with that.
If the yard looks unkept, show up to take care of it, or tell them you have a quote for a landscaper and are willing to pay for it. Drop off packaged food, easy meals they can choose when to eat because schedules don't matter any more. Give them your number and tell them to contact you any time, no questions asked, for any reason, especially to just talk about any random bullshit. If the caretaker doesn't take advantage of any of that, don't dare put any pressure, even the gentlest amount, to change their mind.
[+] [-] JeremyNT|4 years ago|reply
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.
[+] [-] brudgers|4 years ago|reply
On a personal note, I am sorry for your loss.
[+] [-] conductr|4 years ago|reply
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).
[+] [-] rglover|4 years ago|reply
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: [email protected].
[+] [-] unknown|4 years ago|reply
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