[HN Gopher] Ask HN: Coping with cancer in the family
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Ask HN: Coping with cancer in the family
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.
Author : parvatzar
Score : 182 points
Date : 2021-11-05 15:12 UTC (7 hours ago)
| johnwheeler wrote:
| I have gone through this situation. In 2002 my mother passed away
| from cancer.
|
| 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 wrote:
| #4 --> compassion
|
| 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.
| Hermitian909 wrote:
| I'm so, so sorry. I lost my mother to a different but similar
| terminal illness several years ago and I know how hard this is.
| It took her about ~4 years to die after the diagnosis and I'll
| share what I learned.
|
| 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...
| mikeiz404 wrote:
| Sorry you have to go through this challenge.
|
| 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.
| Vanderson wrote:
| My sympathies. My father has been diagnosed with pancreatic
| cancer a few months ago. He's lost a ton of weight and energy and
| has had a few minor endoscopic procedures and one by-pass surgery
| (tumor closed off end of his stomach).
|
| 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 wrote:
| NanoKnife bought my father probably another year or two of
| fairly good qol. I'd recommend looking into it if you haven't
| already. Sounds like your father has a similar way of dealing
| with it to mine.
| softwaredoug wrote:
| I helped care for my mom somewhat last 2 years until she passed
| in March.
|
| 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.
| bjornlouser wrote:
| I wish I had made a list of events that occurred when my mom was
| 10, 20, 30, etc and asked her to describe where/who she was at
| those times. Make a discreet recording of those conversations, if
| possible.
| pkdpic wrote:
| I lost my mother a few years ago to an abrupt cancer diagnosis.
| Just being by her side every hour I could was all that mattered
| in the end. I went to work, kept eating and being present for my
| wife etc to honor the life and love that she gave me even though
| it all felt impossibly difficult. I think of her every day but
| somehow have no real regrets about her passing.
|
| 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.
| blablabla123 wrote:
| I went through a similar situation during the end of my studies
| while also having a part-time job at the same time.
|
| > 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.
| conductr wrote:
| I am sorry to hear of this. I have been though a similar
| situation with my wife. She was diagnosed in early 30s and it was
| completely unexpected. About 6-7 year in retrospect, she managed
| through the surgeries/chemo fairly well. Being young is an
| advantage in that regard. Also, it was detected early and had a
| high chance of survival. Her mom was also retired and young
| enough to help with the daily stuff and general companionship
| during the processes. Even though it makes no real difference,
| you'll find yourself wanting to be present at every treatment,
| doctors appointment, etc. And, it's very difficult if you're
| healthy and trying to minimize impact on your personal career.
|
| 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).
| zrail wrote:
| I was diagnosed with cancer in late 2012 but was ineligible for
| US FMLA because I had only been at my job for 6 months. I muddled
| through the chemo fog and tried to work as I was able, but
| honestly it was pretty awful and I used a lot of PTO (combined
| with sick time). My at-the-time girlfriend was on leave from her
| job so we made it work. My mother was able to visit a few times
| too (we were on the other side of the country from family).
|
| 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.
| 3maj wrote:
| When my father was diagnosed with stage 4 lung cancer his sister,
| my aunt who is also a Dev, explained the situation to her team
| and took some time off here and there to help out. Even if theres
| nothing your coworkers can do they will be more than
| understanding, they wont get ticked off if you're late with
| something. You might notice theres a good chance some of them
| will pick up the slack and never ever mention it. We're all human
| and we all have a natural tendency to try and help those that we
| are surrounded by.
|
| 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.
| chaganated wrote:
| oncology is mostly a racket. faith, fasting, & fenbendazole. read
| warburg, pauling, pubmed. revici on archive.org is also
| interesting. PET scan is used to visualize changes in METABOLIC
| processes...
| tamaharbor wrote:
| My mom was given 1-3 months to live. Now after one year, she is
| currently the healthiest woman in hospice care. Hang in there,
| anything can happen.
| munk-a wrote:
| So, personally speaking, my mother has had breast cancer - and my
| dad has gone through a hat-trick. Prostate cancer in his mid
| fifties, kidney cancer about two years ago (in his seventies) and
| a pretty slow moving lung cancer about six months ago (that won't
| get him for quite a while so we're not doing anything about it).
| For my mother the cancer was caught early but still resulted in a
| mastectomy - an operation that can be emotionally difficult but
| thankfully was early enough to be a complete elimination. For my
| father the prostate cancer was caught relatively early and
| surgery and light kemo got him through - the kidney cancer was
| the really close scare with it coming on undetected until stage
| three when he was having appetite issues due to the mass blocking
| his GI functions - surgery and heavy drug use was required in
| treatment but the surgery was risky enough that me and my brother
| flew in to take care of household things and help mom and pop
| through it.
|
| 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).
| ksaun wrote:
| Do you recall which graphic novels?
| munk-a wrote:
| They weren't specific to cancer - just emotionally touching.
| The most memorable one was out of The Maxx series.
| thelastinuit wrote:
| Two of my best friends who also happened to be family got cancer.
| It was painful... in my experience what they say about cancer is
| true: worst part about cancer isn't what it does to you. but what
| it does to the people you love. the ones that continue living...
| but hey time may help... dogspeed fellow human.
| CobaltFire wrote:
| I'm actually at an appointments for my sons leukemia right now.
|
| 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.
| AlexanderGull wrote:
| I'm very sorry to hear this and I'm going through something
| similar. My mother has been diagnosed with late stage cancer a
| couple of months ago. Here's what I'm doing:
|
| - 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.
| byteCoder wrote:
| I'm sorry you're going through this.
|
| 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.
| overthemoon wrote:
| My father in law passed earlier this year from cancer. We ended
| up taking him into our home for the last week and a half of his
| life. Lots of good advice in this thread (imho chief among them:
| therapy, asking for help from people you trust) so I'll just add
| some of the best advice I got, which was to be flexible. Things
| can change quickly, for good and bad, and it's good to take it as
| it comes, to remind yourself that you can't see into the future,
| to do the best you can right now. It's not easy, but for me
| personally, it made me calmer and more adaptable, especially for
| a situation that was largely out of my control for numerous
| reasons.
| wly_cdgr wrote:
| My sympathies. This shouldn't require any changes in how you
| treat or interact with your mother unless changes were already
| required. We are all dying at all times and life goes on.
| jupiter90000 wrote:
| I've found therapy and support groups helpful during and after
| going through this. People at work and other places may not get
| it or have the capacity to care to the extent to make a
| difference.
|
| 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.
| dr_orpheus wrote:
| I have watched my father battle with cancer for the last couple
| years. One of the most difficult things for him has been dealing
| with the things that he can no longer do physically because of
| the disease/treatment. So we have tried to focus and emphasize
| the things that he still can do or find replacements for that can
| still try and bring him the same joy. For example, he was an avid
| cyclist but can no longer go mountain biking (or really any
| biking at this point) anymore. So instead we have tried to take
| more drives in to the mountains to still replicate some of that
| feeling
|
| 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.
| thisisonthetest wrote:
| I lost my dad to cancer at 14 so I wasn't in a position to take
| care of him, I'm sure that adds another layer to the immense
| challenge of having a loved one diagnosed with cancer. Also, we
| had caught it very late so we only had six months with him after
| his diagnosis.
|
| 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.
| devastated_123 wrote:
| My father has just been diagnosed with stomach cancer, so I am
| going through a similar journey.
|
| 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.
| axegon_ wrote:
| Right here, though with some more experience(been ongoing for a
| few years now), but relatively similar situation. And to add on
| top of that, a large portion of the rest of my family has worked
| actively against me, my mom and my dad for decades and while I
| was young and naive not to realize it when I was a kid, somehow
| my parents realized not all that long ago. Luckily I was put on
| the front line of all that when I was 20-21-22 and I knew exactly
| how things were eventually going to unfold, and despite me
| constantly warning my parents about what was eventually going to
| happen, they simply brushed it off and ignored me. And as per
| Murphy's law, everything unfolded pretty much in parallel at the
| exact same time, as well as my dad having several health issues.
| They were a consequence of his own bad choices to a large degree
| - severely overweight, smoking, drinking, all that stuff but
| certainly didn't help the situation. So as you can imagine(though
| I am perfectly aware it's not helping), I can sympathize and I
| can sort of give you some tips on how I managed to cope with it.
| And all things considered, I think I managed it quite well.
|
| * 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.
| elt wrote:
| My daughter was diagnosed with cancer at 3 years old (stage 4).
|
| 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.
| lr4444lr wrote:
| As a father of two young children, my heart aches when I read
| this. I hope your daughter's spirits have been high, despite
| her challenges.
| agumonkey wrote:
| There's something special about reading words of someone 2000
| years ago that resonates so deeply.
|
| Take care
| CobaltFire wrote:
| I'm in this situation (son is 4, diagnosed at 3) and this
| comment is pretty much everything I would say.
|
| That absolutely includes reading Meditations. My copy is dog
| eared and has many notes written in it.
| 999900000999 wrote:
| Thank you for the book suggestion.
|
| It feels like it does a much better job than modern self help
| books.
| andutu wrote:
| During my junior year in high school my mom was diagnosed with
| early stage breast cancer.
|
| 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.
| hijinks wrote:
| Can't help much but my uncle had a rare case of cancer in his
| liver that started to spread. He just wanted to be treated like
| he didn't have cancer. Sure everyone is different but if he
| wanted a drink he would try to get it himself. If he couldn't
| then he'd ask.
|
| My advice is just spend as much quality time with your mom as
| possible and just be there to listen.
| PicassoCTs wrote:
| It may sound strange, but chemo is quite a killer by itself. So
| if your mother is in the ropes, as in so weak, that another round
| would kill her, postpone the round, even against the doctors
| advice.
|
| 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.
| kubawolanin wrote:
| I am currently fighting stage IV cancer. Spread to my liver and
| lungs. The best thing you can do is to maintain a good amount of
| "vital activities". Everything that brings you joy and good
| feelings overall. Being around your loved ones, listening to
| music, walking, running, coding - what have you. It makes a world
| of a difference in coping with this disease. Even though we're
| dealing with a terminal disease, there's always hope. Also,
| please remember there are people who care for you deeply. Don't
| ghost them.
| trynewideas wrote:
| I'm in the US and my partner was diagnosed with stage 4 cancer,
| and I was their sole source of health insurance, so to keep my
| focus on work I reminded myself every day that if I lost my job
| for any reason, we'd run out of money within weeks covering
| either COBRA or out-of-pocket expenses, lose our home, and they
| would probably die.
|
| 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.
| tldrthelaw wrote:
| Been through this exact thing with my mom, its tough. Take it
| from me (who didn't), get some counseling. See a therapist. You
| need it.
|
| 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.
| raffraffraff wrote:
| My sister was diagnosed with ovarian cancer a few years ago. It
| was the type that you don't survive. One thing I learned is that
| oncologists sometimes know very quickly that you're not gonna
| make it. Hers didn't respond to any of the treatments. She just
| started suffering from all the symptoms pretty much immediately:
| fluid on the lung first, blood clots soon after. Pretty soon the
| tumors had spread throughout her body, so various other things
| just stopped working, like her digestive system, which was pretty
| much blocked off. It's a horrible illness. She was gone within 9
| months, and the last 5 of those were a sharp down-hill, with lots
| of symptom management. There was literally nothing anyone could
| do. I hate to depress or worry anyone who is going through this,
| but you already know it sucks. It's cancer.
|
| 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.
| cromulent wrote:
| I wish I had some good answers for you. I have been through this
| with my wife when my children were young.
|
| 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.
| trynewideas wrote:
| Counterpointing this: the pandemic is still a complicating
| factor in a lot of this. When people asked me during the peak
| of the pandemic, I couldn't justify asking for any of those
| because we were so strongly advised to eliminate all contact
| and isolate for the patient's compromised immune system. Even
| with vaccines and treatments now, and a better understanding of
| how COVID does and doesn't spread, that advice hasn't
| substantially changed.
|
| 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.
| Vanderson wrote:
| I would also add that many people are not used to asking for
| help like this, and he may need to really encourage his mother
| to get requests out of her.
|
| It took a long time for my father to ask for help, and I could
| have been helping sooner.
| cromulent wrote:
| True, yes.
|
| I actually meant: as one of the primary caregivers, you will
| be very busy and very drained emotionally. Accept help if
| offered.
|
| The examples above would have been useful to me, if only to
| spare some energy for getting through the week.
|
| It was also very draining on me to have people come around to
| talk about things and "support" us (actually the reverse in
| many cases), so I would also try to avoid these favours
| becoming social events. That's what would work for me,
| anyway.
| rimeice wrote:
| I went through your current situation three years ago, lived for
| a year or so with my Dad going through treatment and eventually
| coming to terms with his passing over the two years since, my
| main piece of advice is that the best way to look after those
| around you including your mum, is to look after yourself first.
|
| 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.
| tiahura wrote:
| Mom was diagnosed 13 years ago and passed away two weeks ago.
|
| 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.
| lostapathy wrote:
| > Go to her oncologist appointments.
|
| This may or may not be possible. I went through cancer
| treatment earlier in the COVID pandemic and I was not allowed
| to have anyone with me at either my appointments or treatments,
| other than one early oncology visit where they wanted to make
| sure I had somebody else who knew what I was in for and
| understood what circumstances merited hauling me to the ER.
|
| Honestly, I think that was better for me - but recognize that
| others will definitely feel differently. My wife wished she
| could come to me with treatment every day, and still feels bad
| that she couldn't, but I'm glad she couldn't come. Chemo is
| hard. But being there alone, I could zone out (and sometimes
| even sleep!) without feeling like I needed to put on a decent
| face or even be awake to make it worth a visitors time.
| tiahura wrote:
| I wasn't clear. I'm not suggesting sitting through treatment,
| I meant the monthly 17 second visit with the oncologist.
| Often mom wasn't completely accurate in describing her
| condition or side effects. It's useful for someone else to be
| there to help the MD get an accurate picture, and to remember
| what was said afterwards.
| lostapathy wrote:
| Oh I followed - and I really couldn't have anyone with me
| at those visits either.
| tiahura wrote:
| Ours opened up Mayish for 1 visitor. I was also able to
| use the telehealth app and, a couple of times, just
| FaceTime.
| frgtpsswrdlame wrote:
| It's tough but the toughest part you're encountering is the
| newness of it. When my mom was diagnosed I was a wreck. Then it
| evened out a bit and now that she's nearing the end, I'm a wreck
| again. There's an emotional pointedness to these types of things
| that dulls a bit with time.
|
| 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.
| rootusrootus wrote:
| > It's tough but the toughest part you're encountering is the
| newness of it. When my mom was diagnosed I was a wreck. Then it
| evened out a bit and now that she's nearing the end, I'm a
| wreck again. There's an emotional pointedness to these types of
| things that dulls a bit with time.
|
| That really resonates with me. My mom was diagnosed with stage
| 4 cancer a few months ago. It was a roller coaster ride of
| emotions. Now we've settled into the treatment phase; her
| quality of life improved noticeably from treatment with little
| in the way of serious side effects, so life is good again. But
| there is that undercurrent, we know it won't last forever. At
| some point the treatment will probably stop being effective
| enough and then everything is going to go pear shaped again.
|
| I wish you the best in what you're going through.
| floam wrote:
| I drank a lot (really, a lot. Like so much you can have a seizure
| when you try to stop.) when my dad was dying. And didn't visit
| for a few months because I had the excuse of my toddler I'm
| raising. I regret not spending more time back up there with him
| and my mother until the very end. I know he was scared and I wish
| I was there for more of it.
| diskzero wrote:
| I am so sorry alcohol caused you this grief. It can be such a
| destructive force. I don't know what your current relationship
| with alcohol is, but mine was not good at all. I have been
| sober for three years and it has made a huge difference for me.
| I also know that people can drink responsibly. I can't. If you
| ever want someone to talk to, please feel to reach out to me.
| boramalper wrote:
| My mother has been diagnosed with stage 3 breast cancer in
| December 2020 and we are fortunate enough to say that although
| she might not be considered "cured" yet, we have no reasons to
| worry about the immediate future and her treatments are going
| well.
|
| 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.
|
| ----
|
| 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.
| Ancalagon wrote:
| Whenever life has gotten difficult, I typically try to take it
| one day at a time.
|
| I hope you and your loved ones find some comfort in this
| difficult time.
| grvdrm wrote:
| Oh man, quite the history for me here.
|
| 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.
| rglover wrote:
| Lost my mom to cancer back in 2009. She was sick from ~2000 until
| then.
|
| 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.
| swat535 wrote:
| I lost my mom to cancer when she was only 40 years old.
|
| 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.
| dev_throw wrote:
| Always encourage her to seek second or third opinions and to join
| support groups if she can. All cancers are not the same, and
| staging can determine prognosis, but nothing is set in stone.
| Ensure that she is active, as that seems to help reduce harshness
| of chemo to some extent anecdotally.
|
| 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.
| sswezey wrote:
| I was fresh out of school as a developer when my mom's (terminal)
| cancer came back from remission. It was really difficult to focus
| 100%. I spent all of my vacation time from when I found out till
| her passing visiting her.
|
| 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!
| WarOnPrivacy wrote:
| I was 14 when she was diagnosed, 21 during her last months. I
| talked about it here
| https://news.ycombinator.com/item?id=23133665#23134613
| sharadov wrote:
| Are you the only caregiver? If you are, and can afford to hire or
| have friends and family help please do so. The caregiver needs
| breaks , you need to pay attention to yourself. My dad took an
| entire year off to take care of my mom when she had cancer
| Unfortunately, despite us telling him, he would never leave her
| side ( we were fortunate to have people who were willing to come
| and help out). He was completely burnt out, and her death was in
| some ways a relief, he started eating better, and taking care of
| himself. ( I could not help since I was living in another country
| and had a young family myself). Therapy helps too, or just
| talking to people and being kind to yourself.
| SnowingXIV wrote:
| The timing of this post is too real. I'm so sorry to hear that.
| It's likely not any solace, but I've gone through and am
| currently going through something similar.
|
| 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.
| vmception wrote:
| As others said, try to take leave but there is a reality where
| that is not possible:
|
| 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.
| nickyvanurk wrote:
| Sad backstory: I'm 28. Lost my father at 10, brain tumor. Lost my
| mother at 25, breast cancer. Lost my brother in April, alcoholism
| (mainly due to the loss of our father). My grandma got surgery 5
| weeks ago because a of brain tumor as well (luckily the 'good'
| kind), the worst thing is it made her nearly blind. Let's see how
| that unfolds.
|
| How do I cope? I am not sure, live just goes on. The death of my
| mother actually has put things more into perspective about the
| death of my father. I have said everything I wanted to my mother
| and she wished for me to live my life and not be sad for too long
| when she moves on. I intent to honor that wish. That's what I
| think about the most when I feel super sad about it. It helps a
| lot.
|
| It has delayed my studies, I have development social anxiety, and
| the lifelong sadness I have felt has gotten a bit stronger. I
| will see a therapist next week to get some assistance getting my
| life back on track. The fact that I have ADHD and no meds really
| help with it doesn't help my situation (hard to maintain a
| healthy lifestyle).
|
| I am not sure if I have any 'advice' here. What helped me I've
| already mentioned, and also the fact that it's just part of life.
| I have just gotten to discover a lot more about life sooner than
| most people. I do not intend to let these things consume me or
| ruin my life. That would be disrespectful to my parents who have
| given me the gift of life (admittedly, sometimes it feels more
| like a curse).
|
| Do the best you can and regret shall not follow you! No matter
| what happens. Treat your family like you've always done. Help out
| where needed. Say the things you've always wanted to say or ask.
| And have peace with whatever life throws on your path.
| bebop wrote:
| Really sorry to hear this. I am currently going through a similar
| situation with my father. I don't have any good coping mechanisms
| for you, sorry. All I can say is try and spend as much time with
| your loved ones as possible and be present when you do. I love
| getting my family (parents especially) to tell stories about
| their lives, good fun.
| aj7 wrote:
| Always go with the science.
|
| It is basically an optimization problem.
|
| Provide human comfort.
| aj7 wrote:
| My wife has made it to five years after simultaneous breast and
| ovarian cancer, non-related. After a slow start, we were
| relentless.
|
| While this may not apply to your mother, other people will read
| this. --> 90% of Stage 1 cancers are CURED
| <--
|
| This is not the 1950's.
| GimbalLock wrote:
| Hi there. I'm so sorry you are having to go through this. I went
| through it myself not that long ago. It is awful and very
| painful. The best you can do is be there for your mother and make
| sure she knows that you're there no matter what. If you have to
| take time off work to help her, do it. Consider informing your
| supervisor of the situation and let them know that you may need
| time to be with her and help her and you'll do your best to
| communicate with them regarding your availability when that
| happens.
|
| 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.
| formvoltron wrote:
| Read about senescent cells & chemo. Also, some research shows
| chemo actually boosts metastasis. Anything targeted beats chemo.
| Maybe even focused beam radiation (SBRT).
|
| 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.
| gwbas1c wrote:
| Both my parents came down with cancer in their 70s. They had
| operations, chemo, "declared cancer free," and then it came back,
| second round...
|
| 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 wrote:
| Yes. This is so important.
|
| 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.
| nineplay wrote:
| I'll reiterate the suggestion to take leave. If it's available to
| you, you don't need to take it all at once. I've been taking off
| every Friday to deal with 'care' issues.
|
| 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.
| RyJones wrote:
| Everything else I would have said is already in the comments; I
| don't know the name of it, but the model is something like
| circles of concern. The person at the center of this (your mom):
| all of her concerns and worries flow out from her; all of the
| support flows into her. People in the next circle (close family)
| have the same sets of arrows - concerns flow out, not in; support
| flows in to them.
|
| 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.
| brudgers wrote:
| My condolences.
|
| 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.
| edw519 wrote:
| Me too, a few years back.
|
| 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).
| kamac wrote:
| Whatever you do, don't stop treatment. Follow the doctor's
| advice, but at the same time use critical thinking, and seek a
| second opinion (from a doctor, not alternative medicine) when in
| doubt.
|
| 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.
| Vanderson wrote:
| Choosing treatment is a very personal thing. My father chose to
| stop his chemo treatments and it improved his standard of
| living dramatically. (he's still fighting cancer) A friend of
| mine (a nurse) said she'd never torture her self like she's
| seen so many people do with some treatments. (She died of
| cancer a few years ago)
|
| Sometimes other's people's advice isn't based on what is best
| for you, but on an aggregate across many people, and you could
| be on the bad side of percentages.
| kamac wrote:
| Absolutely. What I had in mind was that if you choose not to
| pursue treatment, make it a conscious decision and be aware
| of the consequences.
| [deleted]
| kingsloi wrote:
| I'm sorry you're going through this.
|
| 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.
| diskzero wrote:
| First of all, I am so sorry you and your mother are experiencing
| this. As you state, it is life and life can be unfair. We like to
| think we have some measure of control and then something like
| cancer comes along and detonates your life and the routines that
| you have built up.
|
| 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.
| pigbucket wrote:
| Some practical stuff to consider (not prescriptions), some of
| which is more relevant in case of advanced disease, and some of
| which may save you time or headaches in the long run, and some of
| which will just seem trite and obvious:
|
| 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
| macdamaniac wrote:
| I had a _very_ similar situation a year ago. My mom was diagnosed
| with colon cancer in October 2020, had surgery then, and then
| went through chemo December - February. I moved from CA to FL to
| take care of her during the time, and it was extremely tough.
|
| 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.
| faramarz wrote:
| I'm really sorry to hear that. This post is bringing back
| memories of my uncle. He had a two year battle with battle with
| brain tumour, and he was the smartest person I know, Principal
| scientist at Qualcomm.
|
| 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
| jimkleiber wrote:
| My mom just went through surgery and chemo and cancer from last
| February to about September and luckily made it through, only to
| have a heart attack this spring, and then luckily made it through
| that. So I'm grateful and yet it's been a long 1.5 years. One
| thing I learned is that while there may be a lot of things in
| common with having someone go through chemo, there also may be a
| lot that differs, so what I say here may or may not apply to your
| situation.
|
| 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.
| city41 wrote:
| I'm really sorry to hear about your Mom. I was diagnosed with
| cancer in September and it has been a wild ride. I can relate at
| least a little, but I'm sure this hits everyone differently and
| we all handle it differently. If you find it is hard to focus,
| that is totally normal. Don't be hard on yourself over it.
| Hopefully your manager is understanding, that can be a huge help.
| bloudermilk wrote:
| So sorry to hear about your mother. I just went through this with
| my father-in-law and will share some of the things we are most
| grateful for looking back.
|
| * 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.
| uzakov wrote:
| I am so sorry to hear this, I have lost my mother to cancer
| earlier this year. It's a pain that I could have never imagined
| before. I think the most important thing you can do is to be
| there, spend 1000% of available time with her, do whatever she
| wants or can bring a smile to her face, take pictures, record her
| voice.
|
| 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
| uzakov wrote:
| One more thing I think helps a lot is to try to have "life as
| usual" for your mother where possible, maybe organise events at
| home/hospital, have dinners, jokes. I did film watching, me
| cooking, reading books for my mum.
| JeremyNT wrote:
| I'm sure everybody has a different takeaway, but here's mine:
| make sure hospice is on the table, and read between the lines
| about what the different doctors are telling you. Do extensive
| research and advocate on your mother's behalf. There are doctors
| who specialize in hospice and you want to bring them to the table
| early even if the prognosis is currently good.
|
| 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 wrote:
| For technical detail, a prognosis of six months or less
| typically makes hospice an option in the US.
|
| On a personal note, I am sorry for your loss.
| jeswin wrote:
| There are many support forums for cancer, often specific to the
| type of cancer. Please consider joining them.
|
| 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.
| surajs wrote:
| Hang in there, my mom recovered from advanced breast cancer few
| years back so i can understand what you are going through from
| your words it seems you're more worried than you should be..chemo
| works, radiation works, she will be back to normal in less time
| than it may appear to take at this moment.
| [deleted]
| missedthecue wrote:
| From my experience with cancer in my family, I think the number
| one thing I would recommend is that you should remember to keep
| treating your mother as the normal person she is, and not as a
| cancer patient.
|
| 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 wrote:
| Terminal cancer patient here, this advice is perfect.
|
| 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.
| byecancer21 wrote:
| Former cancer patient here.
|
| My biggest immediate concern was the impact on family, and
| them viewing me differently and treating me as a sort of
| victim. Due to extreme rarity of my particular cancer the
| outcome was individually unpredictable. Overall the odds of
| survival are very low and death is often quick; a recent
| research paper uses the phrase "a grim affair" right in the
| title (some doctors get excited to see a singular case in
| their professional career and then publish a case report). It
| was simply unknowable at the time whether it was terminal or
| not.
|
| What to do?
|
| I expressly _forbade_ my family to do any research and try to
| be medically helpful, including my wife who is a tenure-track
| science professor. Also I banned any form of pity.
|
| I kept up social connections as well as I could, went on
| hiking trips in the mountains with insanely low PLT counts,
| attended big weddings in five different countries during
| chemo, and took other - in hindsight outrageous - risks just
| to keep living life. The pandemic has been much worse
| socially than very intense and prolonged chemo treatment.
|
| I never asked about any kind of prognosis, although I had
| pulled the data from SEER as the most unbiased data source
| and assembled the L-shaped KM curves from that myself.
| Doctors only later admitted they thought things were "very
| bad".
|
| A perhaps selfish thing I did was to _avoid_ other patients
| during treatment (though my oncologist liked discussing other
| cases with me, as we never had to debate anything about my
| own case). The emotional burden would have been too large. I
| had observed in a FB group how entire families become
| obsessed with cancer and cannot pull themselves away from
| that many years after their loved one has passed away.
|
| My family and friends mostly stuck with the rules and
| emotional damage was largely avoided.
|
| The worst feeling for me as a patient was not impending doom
| but a loss of control. Certainly some will enjoy "being taken
| care of" and whatnot but that is not everyone's style. Let
| the patient decide which approach is right for them.
|
| Every patient is different. Please respect their express
| wishes, even if that involves taking a step back from being
| overly helpful and involved.
|
| Medically, I actually disagreed with some of the decisions
| from my - very competent and highly rated - doctors, and they
| were fine with that and followed the modified plan. Nobody
| can know whether this made a difference but things seem to
| have worked out surprisingly well for me.
| ojilles wrote:
| I hope this reply chain doesn't grow in length, but I'm in
| the same situation (terminal), and father to two. I wish
| everything could continue as normal as possible while
| acknowledging that the situation has changed.
| seanc wrote:
| Yep, for most people (like my Dad) cancer takes one inch at a
| time. So when it takes an inch you have to give it that inch,
| but you don't have to give it two.
| zrail wrote:
| > you should remember to keep treating your mother as the
| normal person she is, and not as a cancer patient.
|
| 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.
| collaborative wrote:
| There is a chinese movie about how in China people often don't
| tell cancer patients that they have cancer until it is well too
| late in order to let them live with as much normality as
| possible for as long as possible. The operation involves a
| doctor having a private conversation with a relative, and being
| complicit in the pretense
| jimt1234 wrote:
| Same concept. American/Chinese movie:
| https://en.wikipedia.org/wiki/The_Farewell_(2019_film)
| helph67 wrote:
| NOTE: I'm not a medical professional. Chemotherapy is likely to
| negatively affect the gut's microbiome, potentially adding to the
| patient's problems. Restoring the gut's health after each chemo
| round could be required. This article may help.
| https://theclaraclinic.com/blog-home/when-chemotherapy-damag...
| wilburTheDog wrote:
| We learned in March of this year that my wife has cancer. Chemo
| started, there were complications, surgery was performed and the
| tumor was excised. After the recovery from surgery chemo resumed
| and as of today there is one round left. Then comes radiation and
| more surgeries. I work from home, as many of us these days, and
| have continued working throughout, taking individual days of
| medical leave as needed.
|
| 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.
| ChuckMcM wrote:
| My Mom died of cancer. Reading "being mortal" was helpful for me.
|
| 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.
| yuhdam wrote:
| Sorry about your situation and I sincerely hope you get out of
| this soon.
|
| 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.
| inoffensivename wrote:
| My Mom was diagnosed with breast cancer. After it spread to her
| brain, she had a surgery which, due to a medical error, caused
| her to have a stroke. She spend the last 4 years of her life
| almost completely blind in both eyes and paralyzed on the right
| side of her body.
|
| 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.
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