My mom has cancer. Tell me I'll get through this

Miscellaneous and Personal Stuff I Must Share
21

I second this. DesertWife was claimed not by cancer but ALS thirty years ago yesterday. It was nine months from diagnosis to passing and we did the things we could, large and small. One of the largest things we did was go on the Delta Queen from New Orleans to Natchez and back over Thanksgiving.

It was insane to do so – we were trying to move into another home where, at the time, the predicted slower decline would make it easier to care for her. We were moving into a cheaper area so we took a large chunk of the equity and spent it on the trip instead of the down payment so the mortgage was close to double what it would have been.

Looking back though, that trip was the only time she’d had a trip like that. Every other vacation was spent seeing family, going to a political convention, or some other purpose the trip was for, not something to do on its own.

I never regretted the higher mortgage.

22

Oh dear, ovarian cancer that has spread is a tough one. I have had friends die from it but also had friends survive it despite very poor odds. My mother died of breast cancer. It is never, ever, easy.

One thing that is important that people keep putting off is making sure her estate is in order. Not just because of cancer, but other things can kill us as well. The sooner her estate is in order, the more energy she’ll have for the cancer fight. After my father passed, Mom and us kids met with an Eldercare Attorney to figure out her estate. Two days before she died, she signed over the ownership of her condo to us kids equally. That meant we didn’t need to wait to put her home on the market. It’s little things, but it adds up.

I second taking her out on short trips that she’d like. Her energy level may not be up to long trips. Bring her fresh strawberries. Take a nap yourself. Don’t forget to keep planning for your own future. Know that we are here for you. Best of luck to you and your family.

23

My husband died five years ago of bladder cancer. I don’t have it in me to go into much now, but my advice is:

  1. Take care of yourself, too - if you don’t take care of yourself you won’t be able to take care of mom

  2. Get mom’s powers of attorney (medical and financial) and any similar legal documents set up now, while mom is coherent, and have a talk about end-of-life care (odds are she’ll need it sooner or later), Morbid? A bit. But I found having a plan for the worst helped even before we knew it was “the worst”, and when it became “the worst” that plan was even more valuable. Even if the worst never comes, it will allow you to act in mom’s place should she have a bad reaction or be confined to a hospital for awhile.

24

Internet’s great, but have you talked with the hospital or doctors etc. to find out if there are local support groups? I imagine it would be very helpful to have someone who’s going through the same thing, right now, to lean on.

And I keep thinking of this movie, which I really liked even though it’s Young Adult. They say we all want to see our own story on screen. OK the romance angle doesn’t fit, but staring down mortality does. FWIW (it got 81% on Rotten Tomatoes):

Best of luck to you and your mom!

25

So much wisdom here in all these posts. The details differ, but in each case the caregiver gave, the patient lived as best they could until they couldn’t, and in the end, the Grim Reaper wins as we all know he will. And as shown above, the Reaper often loses against the disease you think you’re fighting. You can win many battles, but the war is already a foregone conclusion. I used to find that so scary as to be unthinkable; now I find it liberating and anxiety-reducing. I invite you to consider my POV. Maybe not now, and certainly not fully. But it may grow on you over time.

Our job is not to “survive”, for that attitude implies living forever. Our job is to delay the inevitable as long as the quality of life is worth it, to make each of those days of delay count for something, and to have the wisdom to admit the game has come to an end when the cure becomes worse than the disease. You (any you) may well beat metastatic cancer against major odds. Nevertheless, something else will get you after at most a couple score years. Which is all too few years in the grand scheme of things. Would that we lived a thousand years! But then we’d hunger for two thousand!. IMO better to accept finiteness as a given and make the finite nature count.

This is true whether one has an obvious dread disease, or is simply aging along with normal health for one’s age. Same attitude in either case, with adjustments for our everchanging stamina, needs, and abilities.

I’m 63 in good shape with no chronic conditions. I’m accutely aware I’m dying every day. As is my toddler grandkid and everyone in between. Treat that as a positive motivator to live now, right now, not for tomorrow. Don’t treat that knowledge as a morbid or negative fascination with the eventual failure we are all heir to.

As others have said, let Mom do the things that give her pleasure and make her feel valuable. As topsy turvy as you feel your world suddenly is, she’s got 10x as much on her plate. The prosaic tasks of daily living are an anchor and a lighthouse to her as she sails her stormy seas.

Work to make her feel valued even in infirmity. As she’s willing, you may absorb some of the tasks she finds burdensome. The ideal goal IMO is you assisting her in getting to where she’s living as best she can by her standards, no one else’s. Those standards and her abilities will change, both up and down. But your goal is constant, only the exact way of getting there changes. And along the way you care for you, and her, in the way that fits your needs and abilities, not the preconceived notions of neighbors, relative, or idjits on the internet such as myself.

Good luck. In many ways the hardest part is the 2 or 3 weeks where you are right now, where the explosion is still echoing in your busted eardrums, you’re staggering around wondering what the heck just happened, and you have no more knowledge of what lies ahead. No plan, no schedule, no ideas, no backstory, no nothing. All you see is a big black abyss labeled (probably wrongly) “Mom is doomed soon.” That’s a very disorienting and scary time. It will pass. Don’t wig out. There’s time for that later if it becomes necessary. This is a marathon, not a sprint. Don’t start sprinting from Day One or you’re gonna wear yourself to a frazzle well short of the finish line.

We are here. We’ll always be here. Call on us.

26

I was in your shoes in the summer and fall of '03. Mom got diagnosed in mid-July. They thought it was operable, cracked her open, ran a biopsy, but it had metastasized. So we had to go the chemo-radiation route. That started around Labor Day, after she was healed up enough from the surgery.

The chemo-radiation treatment ran its course, finished up right around Thanksgiving. But Mom was weak, and never really snapped back.

Mom passed Jan 6, 2004. She beat the cancer, but the chemo and radiation basically turned her lungs to jello. I last saw her Christmas Eve of '03. She had awakened during the night with chest pains and shortness of breath. We called 911, and got her to an ER. Her blood ox was too low, so they got her on some O2, and were going to admit her for observation. She wanted some stuff from home, so I left to go get it for her.

I was gone maybe an hour. In that time, her blood ox had dropped so low that they sedated and intubated her.

Over the next two weeks, her blood ox kept dropping, they kept turning up the pressure on the ventilator, Doctors kept spouting medical mumbo-jumbo. Not one straight answer out of any of 'em. Come the morning of the 6th, the Doctors tell us they cannot go any higher on the pressure, it’ll tear her lungs apart. They couldn’t even revive her for final moments. We just had to pull the plug on the ventilator and watch her slip away. It took a little over an an hour before she passed.

Almost twenty years later, I’m still not over it. Her cancer was in remission. The Oncologist was very optimistic.

I’m going to get very drunk now.

27

I want to acknowledge how painful and horrible some of these experiences are to relive. The good and the bad. But from the depths of my heart, thank you. I need to hear it all. I know my story will fit in there somewhere. I can’t look too far ahead. I’m trying to just be in the day.

Tonight she wanted some jelly beans so we hopped into my fancy new truck and drove to the store to get jelly beans and a lotto max. We played a game of skipbo and then watched Jumanji. I hate that it takes death to fix relationships. I’m glad I have that opportunity.

28

I’m so sorry, I’ve been there, my fiancé died of pancreatic cancer in 2005. If you don’t mind, I’d like to offer my tips, in no particular order.

I highly recommend online support groups, it really helps to talk to people that are going through the same thing….plus they are a great resource for practical advice. But be aware that the groups frequently have a survivor bias, the patients and family members of patients that manage to beat the odds stick around the groups for a long time and can be very active (sometimes overly positive) while the patients whose disease takes a more typical course come and go rather quickly without making much impact.

I don’t have any specific recommendations for groups though, the landscape has changed completely since 2005.

Work with her doctor to pick an appropriate course of treatment. When my fiancé was deciding on which chemotherapy to use his doctor arranged for a consultation with a chemotherapy nurse, who actually had a better handle on the real world effectiveness and side effects profile than the doctors.

Don’t doctor shop. It’s important to like your doctors and you shouldn’t stay with one you’re not comfortable with, but don’t shop for the best prognosis. The line between legitimate medical treatments and scam medicine isn’t a bright line, there’s a big fuzzy gray zone and a lot of doctors are in it. You can always find a doctor to give an unproven or inappropriately aggressive treatment if you go looking for one. Please don’t.

Don’t fall for treatments that have a heavy out of pocket cost or require the patient to relocate. I know you’re smart, but cancer patients, even smart ones, can fall victim to desperation and it colors their thinking. We did, a little bit, towards the end……we read an article in the WSJ about some treatment option and searched out the doctor ( who, in retrospect, was surprisingly easy to get an appointment with) but it was very late in the game and it was over before he could start the sort of sketchy treatment. Two years ago, I saw that same doctor on Fox News pushing Hydroxychloroquine. I’m only mentioning this because I don’t want you to think I’m being condescending by telling you to be careful of scams. I think sometimes smart, successful people are more vulnerable to scams because they see a statistic like 10% survival rate and think, “no problem, I can beat that” simply because they’ve spent their whole lives in the top 10%, and that optimism results in bad decisions.

You can go looking for clinical trials if you want, but most of them are really just different dosage schedules and combinations of already approved drugs, and you may buy the drugs through your insurance just like with standard chemotherapy. A lot of these trials are sponsored by the pharmaceutical companies and they profit from the medication.

This doesn’t mean they are necessarily a bad idea, we used a clinical trial protocol because of a recommendation by the chemo nurse, who thought it was more tolerable than most of the fully approved regimens and just as effective. Just don’t expect any miracles.

On the psychological side, give your mom a lot of space. It’s natural for you to want to spend a lot of time with her and to make a lot of memories, but she has a lot to process and may want a lot of alone time.

Watching someone you love deeply suffer is profoundly difficult, and you may find the experience takes over your emotional life and you start to define a good day as a day when your mom is feeling relatively well and a bad day as one where your mom is in pain. It’s important to keep your own emotional life, to retain the ability to be happy about your own good news even when your loved one is suffering in the next room. And you’re still allowed to be upset by the little things unrelated to your mom, despite your mom going through something so big.

Try to stay in the moment. I know this is easier said than done, but practice. Practice not thinking about the future or relitigating the past. These diseases are unpredictable and not everyone has every symptom, so there’s no use worrying about stuff that might never happen. When I could manage to stay fully present I would have these moments where we would be doing something ordinary like eating lunch together, and that became the entire world and nothing else existed and I fully experienced it in a way I never had before, and those moments became my best memories.

I wish you the best. The only way out is through, but you will get through this.

29

All too often, death doesn’t fix relationships, so I’m glad that you’re taking the opportunity and that it looks like you’re doing what you need to get through it. I was relieved to hear that you’re in Canada so don’t need to worry about health insurance. There’s a lot of good advice upthread and I just want to put in my 2 cents.

My FIL died of esophageal cancer 24 years ago; when diagnosed, he was given 6-8 months but somehow lasted 18 months. The diagnosis was devastating at first, but finding everyday things to do with him and dealing with it one day at a time got everyone through. He lived 10 minutes away from us, and my husband and I, and his sister who also lives close by spent a lot of time with him and helped take him and my MIL to doctor visits.

However, during his last months my FIL wanted to see his eldest son, who lived 2 hours away and worked an hour away. He probably wanted to tell him something like “You’re the eldest, so take care of your mother”. But this son has always been uncomfortable with illness and kept making excuses not to show up – until it was too late. We all understood that this son didn’t feel capable of being there, but 24 years later we still feel sad that he couldn’t put his father first to honor his final request, and wasted the opportunity to see him at the end.

Anyway I just want you to know you’re not alone. This is a tough, confusing time, but as you can see, there are many of us who have walked this road and who are glad to give you some encouragement.

30

… and here I am again.

When my husband was diagnosed I started a thread about it which shows the subsequent months. This may or may not be helpful for you. I’ll point out that you’ll definitely see the ups and downs, the problems, the attempts to solve problems, and the point at which moved from fighting the cancer to managing his death. You might be surprised how many of the problems were not the cancer but bureaucracy, assumptions, and mundane crap.

As early as post #16 (of 444) I am talking about treating vs. hospice type situations, and in #17 I’m addressing “support groups”. As I said there, I have not always had very good results. As @Ann_Hedonia points out, some support groups have a heavy survivor bias would could become a problem if things don’t work out well for you. I tried an on-line group and when my husband’s condition went off a cliff they simply didn’t know how to talk about it, or to me. The ones the hospital recommended were way too heavy on “Jesus saves!” for my taste (I’m not a Christian). I did find the thread here to be helpful for me, and I eventually found my support in real life… after he was gone. Oddly enough, the place I worked helped me out a lot more than I expected (despite one cruel manager, but that was dealt with). It was a hard, lonely time for me.

It’s also OK to pull back at times. Don’t isolate yourself too much, but sometimes you need to disengage for a bit. Again, in the thread I linked to there’s a point where I start using @Qadgop_the_Mercotan as an intermediary (#278) which is bit weird, but it worked for me. At the time it felt right and I’m still grateful to him for the support and help he gave at the time.

I will also say that sometimes what you don’t do can be as important as what you do. Three days before my husband died I got into a literal shouting match with a nephrologist who wanted to subject him to a full urological work up and put him on dialysis. The final volleys were “He’s going to die if you don’t do this!” to which I replied “He’s going to die no matter what we do! Probably this week!” Such a course of action would have done nothing to improve my husband’s situation but would have subjected him to stress, pain, and robbed us of some of our remaining time together. Also, he had already refused to go on dialysis, which is why the doctor was trying to convince me to OK it.

My sister is a hospice director. She has much to say about how doing too much to stave off death can lead to a more miserable end. Know when to say no. Know when to quit something that isn’t helping. Know when to change course.

I feel like I’m being a bit negative dwelling on death and the end, but that is how my husband’s story ended. So much of cancer treatment leans on the positive and so seldom do we talk about when death happens despite our best efforts. Some people who are positive and supportive will desert you death looms on the horizon, it’s sad but it’s the truth. Others will step up and be there for you even more than before.

So if you have questions about what the terminal end of such a journey is like feel free to ask me. I am willing to be there to the very end, and talk about how things come to that end if that’s what you need at the time. Conversations around death and dying have helped me cope with death and dying. My preference is to face the truth when that occurs rather than engage in hopeless optimism.

When we knew my husband was terminal that day was not the end. There were still more days ahead, and still more meaningful and beautiful moments. The sunlight is never more golden, the birdsong never more sweet, the spring never more beautiful than when you know time is running out. The most remarkable day was just a few before he died when he “woke up” and had a day of greater clarity, when he was fully himself again and we truly spent a final day together.

Unfortunately, I knew that was a sign of impending death. So did my sister, who told me to stay by his side and brought me food and ran errands so I could spend that precious, precious, oh so precious final day with my husband. I suspect he knew it, too. We tried to relive 30 years with our words that day, with the spring sunshine falling through the window.

I have to stop now. I am crying again. But I would not trade that memory for anything.

31

The normal - in fact hoped for - course is that parent die before their children. So while it is sad and all change everything, of course you will get through this. (I guess I am unemotional, but I don’t see how terms such as “devastated” help anything.).

My mom died of aggressive breast CA some 25 years ago. Then dad died 1 month later. It really sucked, but life goes on.

Strangely enough, my mom said it really helped her when - as they were proposing yet another escalation in treatment, I told her, “Either it will get better or it won’t.”

Sorry if this sounds too harsh - I actually mean this well. But I have no personal “hope” for serious CA diagnoses. (Bladder CA took my best friend at 50.) IMO/E, the best you can do is enjoy every moment you have with them, and help them enjoy every moment they have. You moping around helps nothing. I wish my BF had not put off his travel plans for the sake of treatment - which was ineffective.

32

Another thing - don’t put off to tomorrow…

After my mom died, I had anticipated spending more time w/ my dad. He led an interesting life, and I planned on asking him all about it - maybe getting to down on tape. But he died 1 month later.

My buddy - when he got CA, he had 2 trips planned - to Tibet and Egypt. Drs persuaded him to cancel them in favor of treatment. Nothing worked, and he died >1 yr after diagnosis. He said the only thing he regretted was not going on those trips.

I stopped by to see him the day before he died - hospice at home. He was obviously tired, and I sort of felt I was intruding - even tho I was probably giving his wife a break. A football game was coming on, but he was falling asleep in his chair. To this day, I regret that I did not stay there longer - even if he just dozed in his chair.

33

How do I go to work without feeling guilty for leaving her at home, alone? My schedule will change on June 20th because I’m in a program where the government is paying me to go to school to become a care aid which is the same as a nurses aid. I don’t know why they changed the name. But because of covid the course has become online via zoom so I’ll be paid to be home for the next 6 months.

I go from thinking “I can’t do this” to “I have to do this”. My life will go on and I’ll have to pay the bills.

I try to tell myself my thoughts aren’t wrong, they’re just thoughts but man I’m having crazy thoughts. Like “would I stand naked in the grocery store and give oral sex to my ex-boss to make this go away” and of course I would. I try to pick which relatives or friends I would rather die than my mom. Most of them I would pick to die instead.

I am open to any and all advice/experiences even if they seem harsh. I will be leaning on you through this. I also imagine I’ll be doing some private messages with people as time goes on.

34

All of what you are feeling is common. Which doesn’t make it any less real, any less scary, or any less burdensome in the moment.

But know you’re not a freak for having these thoughts. They are normal. Grasping at odd straws of ideas scattered every which way is also normal. Over the next weeks you’ll adapt to the new reality and the more outlandish ideas swirling in your head will subside. With no need to be ashamed of them. You are embarking on a monster-sized voyage of learning about life and about yourself. You’ll be far more skilled at the end than you are here at the beginning. And there is no dishonor in any of that.

Yes, you do need to continue your occupation, or school, or whatever. You have a new very large and very unwelcome hobby, but you also must keep your own life progressing more or less as it was. Stop and think for a moment how much more screwed Mom would be if your own personal or economic life fell apart now. Something in your life may have to give to allow room for this new hobby. Maybe you stop volunteering, or stop Doping besides these sorts of threads, or maybe just less of whatever mindless diversion (TV?) you use to fill your spare time.

Feel free to howl at the Moon about the unfairness of it all. We each have done so in our own turn. It won’t change the Moon or the inherent unfairness, but it may improve your perspective of it.

Big hugs from afar.

35

Years from now, how will you look back on the entirety of how you acted throughout this situation? Make the effort to adjust your thoughts/actions with that in mind.

First off - no one dies of cancer overnight. So if you aren’t able to be with her every minute of every day TODAY, there is going to be plenty of TOMORROWS for some time. The VAST majority of CA situations are marathons, not sprints. You have to marshall your resources for the long run - time, $, emotional… Crazy thoughts and stress can be exhausting.

Second, look into what your employer allows in terms of compassionate leave, FMLA, etc. Try to be as flexible as possible. I suspect being able to take a day or few hours here and there might be more useful to your mom (and you) than something more.

Third, be up front with your mom, and ask her what SHE wants. I would not be shocked if, although she would LOVE to have considerable quality time with you, she has no great desire for you to be with her every waking moment. So be honest with yourself as to what you are doing for her - as opposed to what YOU are doing for HER. And don’t act a certain way because you get the impression that is how other people act in such situations. My preference is to avoid the public dramatization of one’s woes, but MANY people clearly differ! ;). And, if she gets worse, there WILL come a time at which more will be required of you. So don’t exhaust yourself at the start.

Fourth, you are already one step in the right direction by acknowledging those thoughts are crazy. You are likely going to keep having those thoughts, but tamp them down and place your energy instead in constructive directions. I think there are basically 3 categories of effort you should consider (I guess I’m in list-mode today). You should do whatever you can do to help her with her health care needs - whether that be taking her to appts, or just talking things over. You also should do fun/enriching/distracting things - knowing you do not have endless time. But if your mom is anything like the people I know who have died from CA, I suspect she will also appreciate the extent to which you can keep things as close to normal for as long as possible. I wouldn’t be surprised if she would prefer that you came over and told her what happened at work Thant day, than to have you ever-present, offering to fluff her pillows and challenging her to another hand of canasta.

Finally - tho it is too early at this point, she may appreciate discussing funeral/estate matters. If there is anything worse than losing a loved one, it might be using a loved one who leaves a messed up estate w/ unclear wishes.

Good luck. Be the person you WANT to be and know you are capable of being.

36

You go to work because you have to.

When my husband was dying work was an island of normality in a sea of strange desperation.

I don’t know how your employer would regard things, but I told mine what was going on. The result was that I was able to take phone calls when normally that wouldn’t have been allowed, I was able to come in late or leave early when necessary without endangering my job. Not all employers will be that flexible or understanding, but when they are it does make a job easier to juggle with everything else.

37

Denial. Anger. Bargaining. Depression. Acceptance

The thing about the five stages of grief is that you don’t move through them in an orderly fashion. You bounce back and forth randomly, you might even feel one day that you’ve gotten to acceptance, only to find yourself back at denial or anger the next day. It’s normal, and what you’ve described is a classic example of bargaining.

I would try to distract myself by playing solitaire on my computer, but then I’d get myself in these thought loops of “If I win 10 games in a row, he’ll get a miracle and survive, then I’d get thrown into depression when I lost the ninth game”. It’s crazy, but it’s also completely normal.

Don’t feel guilty for going to work, or living your life. You will want to be by your mother’s side constantly, monitoring her physical and mental state….but honestly, that’s exhausting for both of you. She probably needs a little space, and she probably doesn’t want to be treated like a child that can’t be left alone.

If she is at the point where she can’t get to bathroom or reheat a simple meal without help try to find someone emotionally uninvolved that can help out when you’re at work.

I think it’s very healthy to continue to work in these circumstances. It takes your mind out of the weird thought loops and helps you maintain your separate emotional life. And it’s OK to be happy when good things happen at work, and it’s OK to be frustrated and angry at the little bad things. Its OK to go out with your coworkers and have a good time. Work and social interaction is better than OK, actually……it recharges your batteries.

There may even come a time when your mom asks you to do something for her and you have other plans. If it’s a minor thing or something someone else can do, feel free to say no without guilt.

Some patients, even the ones that are kind and loving, can get manipulative with their caregivers, it’s a way for them to regain a sense of control that the disease has taken from them. Be aware of it and try to derail it without being unkind.

When my mom was incapacitated she would try to dictate every aspect of her care……she would insist that a particular family member make her lunch, for example……and it was usually the person who would be the most inconvenienced by the request. I put my foot down and assured her that we would get her everything she needed, but she didn’t get to micromanage us.

Try to stay well rested and ask for help if you need.

38

About those crazy thoughts…they’re really just your mind’s way of trying to measure and come to terms with your own desperation. Am I desperate enough to save her if I could by doing this horrible thing? Do I want her to live more than I want this other person to? The answer will always be yes. I would not try to tamp down those thoughts. I’d gently acknowledge them for what they are and move on.

About support groups…when I had BC, I found them invaluable. Patients often know things doctors don’t, like little comfort measures that make a world of difference. However, my experience was the opposite of Ann_Hedonia’s: everyone in the groups I joined seemed to have a recurrence or just got the news that they were out of options. It was disspiriting. Luckily, a member of one group PM’d me to say that there was a negative bias because the women who did well posted only briefly, as they could move on; it was those with poor outcomes who felt the need for support

The moral of the story is to use support groups for support and not as representative of all patients or predictor of odds.

Also, don’t get so involved with taking care of your mother that you don’t give her the opportunity to mother you. As my mother aged, I mothered her more and more, but I wish for her sake I’d given her the opportunity to mother me a little more. After she died, I read Atul Gwande’s Being Mortal: Medicine and What Matters in the End, and I understood how important it is to both quality and quantity of life to be needed.

39

The thing to remember is your mother is no sicker today than she was yesterday. Knowledge that she’s ill doesn’t mean you have to be by her side 24/7. In fact, she may want some time alone to process the news, to grieve, to start to adjust to her new reality. Every person is different, but I personally need to withdraw when I get bad news. Go to work.

StG

40

Whatever it is, you’ll get through it. A lot of things are out of your control, which is maddening, but what is in control is how you react. Your mom and everyone in her life will need to support each other and acknowledge that this sucks, but we are here for each other. Even during the hardest times, there are sweet moments and funny moments and happy moments, cherish them.