What do you do while waiting for a potentially terminal diagnosis?
May 4, 2020 2:28 AM Subscribe
I've got a medical condition that looks like it's leading to a terminal diagnosis giving me 2 to 5 years. Of course, none of the doctors I've see so far (after 2 lung x-rays, lung CT, multiple blood tests and negative COVID-19 swab) will say so -and I don't blame them. Some doctors (very understandably) get frustrated with my googling. Its a minimum of 2 weeks before I see a lung specialist with Australia's free medival system.
But I can read and research (have access to medical journals - the bane of drs)and learn and make errors in my judgement. I suspect a number of diagnoses (having been complete access to my results and researching what they mean). I'm not bringing the results here because you guys can do what I did - evaluate potential diagnoses. What I want is what to do to not keep crying because I think I'm dying before I know I am, to be responsible and trusted by my doctor (I made the mistake of telling him I thought I was a hypochondriac, but that was meant to indicate I don't seek medical assistance until way after I should because I don't trust myself - I don't think he took it that way).
I'm devastated at the thought of leaving my kids before they're stable,and at making my brothers sad. I'm disappointed in the lack of travel, learning and professional development I won't get to do, and I'm peeved that I will never achieve again what I did on my 48th birthday, walking 37 kilometres.
I would like to have a vege patch, painting lessons and time to quilt but currently, and perhaps for the rest of my life, I will be so tired walking between my living room to my bedroom that I will need a sitdown. I am so pissed off that lifestyle changes added 30kg to me in last 3 years, and I can't find a way to lose weight (no exercise for a start).
I'm autistic and late diagnosed so my kids didn't get a good start and still aren't stable. I want to know they are going to cope.
But I can read and research (have access to medical journals - the bane of drs)and learn and make errors in my judgement. I suspect a number of diagnoses (having been complete access to my results and researching what they mean). I'm not bringing the results here because you guys can do what I did - evaluate potential diagnoses. What I want is what to do to not keep crying because I think I'm dying before I know I am, to be responsible and trusted by my doctor (I made the mistake of telling him I thought I was a hypochondriac, but that was meant to indicate I don't seek medical assistance until way after I should because I don't trust myself - I don't think he took it that way).
I'm devastated at the thought of leaving my kids before they're stable,and at making my brothers sad. I'm disappointed in the lack of travel, learning and professional development I won't get to do, and I'm peeved that I will never achieve again what I did on my 48th birthday, walking 37 kilometres.
I would like to have a vege patch, painting lessons and time to quilt but currently, and perhaps for the rest of my life, I will be so tired walking between my living room to my bedroom that I will need a sitdown. I am so pissed off that lifestyle changes added 30kg to me in last 3 years, and I can't find a way to lose weight (no exercise for a start).
I'm autistic and late diagnosed so my kids didn't get a good start and still aren't stable. I want to know they are going to cope.
Best answer: I've been in this situation a couple of times. It worked best for me to pretend it wasn't happening as much as possible. Distracting myself so I could avoid thinking about it got easier each day; if I stayed busy enough to minimize rumination on the first day, that built a foundation to reduce it even more the next.
If I was able to be active, it was most useful to me to do physically active work around my house and yard. The time I was too sick for that, I binged lots of really engaging TV. After some time doing that, I found the mental capacity to focus on doing some research on a couple of topics I was interested in. Getting into a flow state doing that helped the most, but I definitely couldn't have done that without practicing distracting myself in other ways first.
posted by metasarah at 3:09 AM on May 4, 2020 [9 favorites]
If I was able to be active, it was most useful to me to do physically active work around my house and yard. The time I was too sick for that, I binged lots of really engaging TV. After some time doing that, I found the mental capacity to focus on doing some research on a couple of topics I was interested in. Getting into a flow state doing that helped the most, but I definitely couldn't have done that without practicing distracting myself in other ways first.
posted by metasarah at 3:09 AM on May 4, 2020 [9 favorites]
Best answer: I have a health condition with a high mortality rate, where about one quarter of us die within the first year, and two-thirds of us don't last five years. I'm on Year 4 now and I'm doing okay, and I'm thankful to be receiving excellent care, and I'm generally optimistic that I'll get to stick around for a while.
Ramping up to my diagnosis, I thought my life was over. And that was both utterly untrue and completely true at the same time. You can't really know what it's like until you have the actual diagnosis, and even then it's been a world of surprises. You may or may not be able to do some of the things you would like to do.
For me to deal with it in a healthy way, I kind of had to create a hard line in the sand. I had to take time to grieve the person I'd been before falling ill, take stock of my accomplishments, and most importantly, I had to REALIZE MY ACCOMPLISHMENTS WERE ENOUGH for my lifetime. If I'd been hit by a bus, my life would have been over in a snap, and whatever I'd accomplished by that point would have had to be enough. Taking that pressure off myself was the kindest thing I could do for myself.
I found I had to let a lot of things go and not compare Previous Me to Sick Me. Previous Me was active, enjoyed travel, able to hold down complex and interesting work. Sick Me can't do much of that, but Sick Me does pretty okay for a sick person, and Sick Me does so much more than Dead Me could possibly do! Seriously, compared to Dead Me, Sick Me is a total winner. Sick Me can do a little modest gardening, enough to keep the weeds away. Sick Me can care for my dog and handle the occasional load of laundry. Sick Me finds a lot of joy in my friends and family and internet communities, and has transferred my social life to text, email, and the occasional dining out when the stars align and energy allows. (Metafilter is a lifesaver because I can pick it up whenever my energy level allows and people are so welcoming and understanding.)
As you're waiting for news, it's easy to fall to worry. Please be kind to yourself and don't suffer those fears and losses before you need to. Right now, you are there for your children. Don't put yourself through the punishment of losing them multiple times unnecessarily. And don't say you won't ever get to do a painting class -- I took my first painting class last fall and it was a boon to my soul and it renewed my capacity for beauty.
In the meantime, take as much control of the situation as you need to. Write down a list of questions to review with your doctors. (I've actually typed them out and distributed copies for them to follow along.) You can google, and it's hard not to, but please never tell a doctor that your questions or concerns are coming from google. Also, do not call yourself a hypochondriac -- what you are feeling is what you are feeling, and your concerns are valid and deserving of respect.
Waiting is hard. Please be extra kind to yourself.
posted by mochapickle at 4:09 AM on May 4, 2020 [69 favorites]
Ramping up to my diagnosis, I thought my life was over. And that was both utterly untrue and completely true at the same time. You can't really know what it's like until you have the actual diagnosis, and even then it's been a world of surprises. You may or may not be able to do some of the things you would like to do.
For me to deal with it in a healthy way, I kind of had to create a hard line in the sand. I had to take time to grieve the person I'd been before falling ill, take stock of my accomplishments, and most importantly, I had to REALIZE MY ACCOMPLISHMENTS WERE ENOUGH for my lifetime. If I'd been hit by a bus, my life would have been over in a snap, and whatever I'd accomplished by that point would have had to be enough. Taking that pressure off myself was the kindest thing I could do for myself.
I found I had to let a lot of things go and not compare Previous Me to Sick Me. Previous Me was active, enjoyed travel, able to hold down complex and interesting work. Sick Me can't do much of that, but Sick Me does pretty okay for a sick person, and Sick Me does so much more than Dead Me could possibly do! Seriously, compared to Dead Me, Sick Me is a total winner. Sick Me can do a little modest gardening, enough to keep the weeds away. Sick Me can care for my dog and handle the occasional load of laundry. Sick Me finds a lot of joy in my friends and family and internet communities, and has transferred my social life to text, email, and the occasional dining out when the stars align and energy allows. (Metafilter is a lifesaver because I can pick it up whenever my energy level allows and people are so welcoming and understanding.)
As you're waiting for news, it's easy to fall to worry. Please be kind to yourself and don't suffer those fears and losses before you need to. Right now, you are there for your children. Don't put yourself through the punishment of losing them multiple times unnecessarily. And don't say you won't ever get to do a painting class -- I took my first painting class last fall and it was a boon to my soul and it renewed my capacity for beauty.
In the meantime, take as much control of the situation as you need to. Write down a list of questions to review with your doctors. (I've actually typed them out and distributed copies for them to follow along.) You can google, and it's hard not to, but please never tell a doctor that your questions or concerns are coming from google. Also, do not call yourself a hypochondriac -- what you are feeling is what you are feeling, and your concerns are valid and deserving of respect.
Waiting is hard. Please be extra kind to yourself.
posted by mochapickle at 4:09 AM on May 4, 2020 [69 favorites]
Best answer: One more thing:
One big positive thing to come from all this is that it's forced me to think a lot (A LOT) about how I want to be remembered. I might be blessed with 30 more years, who knows! But I want to be remembered as someone patient, kind, generous, thoughtful, thankful, quiet, loving, someone capable of change, someone who lives buoyed by intense and meaningful daily gratitude. Knowing that life is precious and finite and uncertain, being able to use this time to right some personal wrongs and try to become a better person has been the very best thing.
As you wait for answers, you might like to spend some time thinking about how you want the next few years to go and what you'd like them to mean, both for yourself and for your loved ones.
posted by mochapickle at 4:44 AM on May 4, 2020 [25 favorites]
One big positive thing to come from all this is that it's forced me to think a lot (A LOT) about how I want to be remembered. I might be blessed with 30 more years, who knows! But I want to be remembered as someone patient, kind, generous, thoughtful, thankful, quiet, loving, someone capable of change, someone who lives buoyed by intense and meaningful daily gratitude. Knowing that life is precious and finite and uncertain, being able to use this time to right some personal wrongs and try to become a better person has been the very best thing.
As you wait for answers, you might like to spend some time thinking about how you want the next few years to go and what you'd like them to mean, both for yourself and for your loved ones.
posted by mochapickle at 4:44 AM on May 4, 2020 [25 favorites]
Best answer: This made me think of the recent movie The Farewell, in which a family in China lies to the grandmother so she doesn't know about her cancer diagnosis. It's based on a real story, and the grandmother ended up living much longer than she was expected to (as of the beginning of this year, she was still alive seven years after she was given three months to live). I mention this as an example of the fact that you don't know what's going to happen even *with* a terminal diagnosis. But you don't have a diagnosis yet. I think you should wait, as much as you can, to dwell on this when you do actually know more about what's going on. Do what you can to take care of your health in general (and avoid COVID). But I think it might be better for your mental health to decide to wait to worry after you see the specialist.
posted by pinochiette at 5:19 AM on May 4, 2020 [3 favorites]
posted by pinochiette at 5:19 AM on May 4, 2020 [3 favorites]
Best answer: I'm sorry you're dealing with this.
I have what I suppose what would be considered a terminal diagnosis (bone marrow cancer), though I refuse to think of it that way. The truth is, as my therapist told me right after I was diagnosed, none of us knows what is going to happen. That was an extremely useful thing to hear. I was told that I could expect to live about ten years, but 50% of people with my diagnosis are dead at five years. However, my support board has a number of people who were diagnosed more than twenty years ago. My mom was diagnosed with the same cancer then, so I know what these people were told - that they could expect to live about two years. Yet here they are. I ignore all survival statistics because they cannot say what will happen to any individual. Evolutionary biologist Stephen Jay Gould wrote a great essay about statistics and survival called The Median isn't the Message, which I have recommended to about a million cancer patients. He, by the way, lived an additional twenty years after being diagnosed with a cancer that had a life expectancy of less than a year. Also, Mike Nesmith, of all people, wrote in his memoir about how he told a doctor friend not to tell a patient that she was not curable - instead, she should say that she can't cure her. There is a difference. And when I posted an Ask when I was first diagnosed, one person pointed out that in my lifetime, AIDS went from being a death sentence to being a disease that people could live with for a long time. Think of the first people for whom medicine could finally do something.
I'm not trying to be all pollyanna about this. It is still very hard. It was a solid two months after diagnosis before I had a single waking moment when I wasn't thinking about having cancer. In fact, this pandemic feels to me as if the whole world was suddenly diagnosed with cancer - people would do anything to have their normal lives back, no matter how hard those could be sometimes. So yes, this is really hard to deal with. But as pointed out above, you don't have a diagnosis yet - you may have something easier to deal with. But if you do have what you fear, you will figure out how to manage with it. You will have no choice.
Best of luck to you.
posted by FencingGal at 6:22 AM on May 4, 2020 [14 favorites]
I have what I suppose what would be considered a terminal diagnosis (bone marrow cancer), though I refuse to think of it that way. The truth is, as my therapist told me right after I was diagnosed, none of us knows what is going to happen. That was an extremely useful thing to hear. I was told that I could expect to live about ten years, but 50% of people with my diagnosis are dead at five years. However, my support board has a number of people who were diagnosed more than twenty years ago. My mom was diagnosed with the same cancer then, so I know what these people were told - that they could expect to live about two years. Yet here they are. I ignore all survival statistics because they cannot say what will happen to any individual. Evolutionary biologist Stephen Jay Gould wrote a great essay about statistics and survival called The Median isn't the Message, which I have recommended to about a million cancer patients. He, by the way, lived an additional twenty years after being diagnosed with a cancer that had a life expectancy of less than a year. Also, Mike Nesmith, of all people, wrote in his memoir about how he told a doctor friend not to tell a patient that she was not curable - instead, she should say that she can't cure her. There is a difference. And when I posted an Ask when I was first diagnosed, one person pointed out that in my lifetime, AIDS went from being a death sentence to being a disease that people could live with for a long time. Think of the first people for whom medicine could finally do something.
I'm not trying to be all pollyanna about this. It is still very hard. It was a solid two months after diagnosis before I had a single waking moment when I wasn't thinking about having cancer. In fact, this pandemic feels to me as if the whole world was suddenly diagnosed with cancer - people would do anything to have their normal lives back, no matter how hard those could be sometimes. So yes, this is really hard to deal with. But as pointed out above, you don't have a diagnosis yet - you may have something easier to deal with. But if you do have what you fear, you will figure out how to manage with it. You will have no choice.
Best of luck to you.
posted by FencingGal at 6:22 AM on May 4, 2020 [14 favorites]
Best answer: One more thing about survival statistics. They are, by definition, out of date.
posted by FencingGal at 6:23 AM on May 4, 2020 [8 favorites]
posted by FencingGal at 6:23 AM on May 4, 2020 [8 favorites]
Best answer: None of us knows how much time we have left. Any of us could get hit by a bus and die tomorrow. Making plans that depend sensitively on anticipated time of death is therefore a complete waste of effort.
So is grieving over all the things we're never going to get to do. That list can be made arbitrarily large for anybody. If I were to sit down and write out all the things I'd like to do that I'm never actually going to get to, it would be a big list even though my own potentially terminal diagnosis is currently no more specific than "I am now well past half way through an average human lifespan".
These are the things I will generally remind myself of whenever musing on my own mortality or ruminating on lost opportunities start feeling a bit difficult to deal with. I hope some of them are of use to you.
posted by flabdablet at 6:26 AM on May 4, 2020 [2 favorites]
So is grieving over all the things we're never going to get to do. That list can be made arbitrarily large for anybody. If I were to sit down and write out all the things I'd like to do that I'm never actually going to get to, it would be a big list even though my own potentially terminal diagnosis is currently no more specific than "I am now well past half way through an average human lifespan".
These are the things I will generally remind myself of whenever musing on my own mortality or ruminating on lost opportunities start feeling a bit difficult to deal with. I hope some of them are of use to you.
posted by flabdablet at 6:26 AM on May 4, 2020 [2 favorites]
Best answer: I'm sorry you're going through this, and I hope you hear better news than you expect.
Other people above have great advice, but the one thing I would add is that many primary care physicians can and will prescribe anti-anxiety meds upon request if you share your situation. It might be something worth looking into. I'm not sure if it works that way in AU, but here in the US it's not at all uncommon to prescribe say 10 days of meds on an as-needed basis.
I shared with my doctor that I had significant levels of health anxiety, based on receiving a totally unexpected, serious diagnosis many years ago. I went in for what I thought was something simple, and it turned out to be something that has a serious impact on my life. Since then, small symptoms seem likely to blossom into great big deals for me. My doc has kindly prescribed lorazepam for when it gets really bad.
It's not something I take every day; a bottle of 20 can last me through a year. But when I find myself locked into a spiral of not-knowing leading to fear leading to premature-and-possibly-unnecessary-grief, one dose can take the edge off it enough to break the pattern and get me back into a more productive mode of coping.
If something like that is available to you, I'd say go for it.
posted by invincible summer at 8:36 AM on May 4, 2020 [4 favorites]
Other people above have great advice, but the one thing I would add is that many primary care physicians can and will prescribe anti-anxiety meds upon request if you share your situation. It might be something worth looking into. I'm not sure if it works that way in AU, but here in the US it's not at all uncommon to prescribe say 10 days of meds on an as-needed basis.
I shared with my doctor that I had significant levels of health anxiety, based on receiving a totally unexpected, serious diagnosis many years ago. I went in for what I thought was something simple, and it turned out to be something that has a serious impact on my life. Since then, small symptoms seem likely to blossom into great big deals for me. My doc has kindly prescribed lorazepam for when it gets really bad.
It's not something I take every day; a bottle of 20 can last me through a year. But when I find myself locked into a spiral of not-knowing leading to fear leading to premature-and-possibly-unnecessary-grief, one dose can take the edge off it enough to break the pattern and get me back into a more productive mode of coping.
If something like that is available to you, I'd say go for it.
posted by invincible summer at 8:36 AM on May 4, 2020 [4 favorites]
Best answer: I can't directly answer your question, but as someone who grew up (from literally my first memory) with the spectre of a diagnosed terminal parent, know that your kids will make it. They will get through it. They will surprise you with their resilience, even if it does take a bit to get there.
The real kick in the gut was the other parent dying before the one with the terminal illness. That just goes to show that the statistics don't mean so much, at least not in terms of how long you really have to live. Do what you can and know that everyone knows you did your best with the hand you were dealt.
posted by wierdo at 9:56 AM on May 4, 2020 [3 favorites]
The real kick in the gut was the other parent dying before the one with the terminal illness. That just goes to show that the statistics don't mean so much, at least not in terms of how long you really have to live. Do what you can and know that everyone knows you did your best with the hand you were dealt.
posted by wierdo at 9:56 AM on May 4, 2020 [3 favorites]
Best answer: I am sorry to hear this, and I hope that the diagnosis is more positive than you anticipate. As to your feelings, my way of coping with these situations is the Buddhist idea that the present moment is the only real time. The past is memory, the future is imagination. You can only act in the present. Mourning a future is as useless as regretting the past. That doesn’t mean you shouldn’t plan and learn, but resist the urge to grab onto something that hasn’t happened and fix your grip on it. Many things can happen.
So, gather information. Make necessary legal decisions (make sure your will in in order, etc). Talk to your doctors, get second opinions, and make the best decisions you can make. Most of all, don’t let your fear of a bad future get in the way of your present interactions. Be present for your family and friends, no matter how hard that seems. Also, be present for yourself, giving yourself permission to be alone if that’s what you need, be busy if that’s what you need, be active if that’s what you need and so on.
posted by GenjiandProust at 10:52 AM on May 4, 2020 [12 favorites]
So, gather information. Make necessary legal decisions (make sure your will in in order, etc). Talk to your doctors, get second opinions, and make the best decisions you can make. Most of all, don’t let your fear of a bad future get in the way of your present interactions. Be present for your family and friends, no matter how hard that seems. Also, be present for yourself, giving yourself permission to be alone if that’s what you need, be busy if that’s what you need, be active if that’s what you need and so on.
posted by GenjiandProust at 10:52 AM on May 4, 2020 [12 favorites]
Best answer: You asked how to stop crying before a potentially terminal diagnosis, so here’s my answer. All of the responses so far have assumed that your googling is correct. Personally, I think you could be way, way off. So you’ve got access to a few medical journals. That in no way makes you qualified to interpret the data, there’s a reason specialists spend 15 years or more studying. And I say this speaking from experience- I’m all about Dr Google and I’ve turned up to see an actual doctor prepared for the worst only to find out I was so far off the mark it’s not funny.
I would say if none of the doctors are saying it’s terminal, it’s because it’s either too soon to tell, they need to run more tests, they don’t actually know what it is yet (hence why you’re seeing a lung specialist) or it’s not actually terminal. If it is terminal, they will let you know once it’s ascertained. But first they try everything and it sounds like you don’t even have a diagnosis! Plus you haven’t even seen the specialist! So you’re jumping the gun by a lot. Like, a lot a lot.
You mentioned wanting your doctor to trust you. I think you have this around the wrong way. I think you should have some trust in them. That means backing away from the medical journals, stop googling and take a deep breath. I know you’re panicky, I know you’re scared and all this serves to do is make it worse. Today your lifespan is as long as anyone else’s and this dark future you’re convinced of is destroying any happiness you could be having right now! Worry when you have something concrete to worry about.
In the meantime, breathe, do whatever self care works for you and hug your kids. I’ll be thinking of you.
posted by Jubey at 8:26 PM on May 4, 2020 [2 favorites]
I would say if none of the doctors are saying it’s terminal, it’s because it’s either too soon to tell, they need to run more tests, they don’t actually know what it is yet (hence why you’re seeing a lung specialist) or it’s not actually terminal. If it is terminal, they will let you know once it’s ascertained. But first they try everything and it sounds like you don’t even have a diagnosis! Plus you haven’t even seen the specialist! So you’re jumping the gun by a lot. Like, a lot a lot.
You mentioned wanting your doctor to trust you. I think you have this around the wrong way. I think you should have some trust in them. That means backing away from the medical journals, stop googling and take a deep breath. I know you’re panicky, I know you’re scared and all this serves to do is make it worse. Today your lifespan is as long as anyone else’s and this dark future you’re convinced of is destroying any happiness you could be having right now! Worry when you have something concrete to worry about.
In the meantime, breathe, do whatever self care works for you and hug your kids. I’ll be thinking of you.
posted by Jubey at 8:26 PM on May 4, 2020 [2 favorites]
Response by poster: I can't tell you how much your kind and thoughtful words have helped. I also asked my doctor when I got my flu shot today "is there a possibility that this isn't a life limiting illness?" And he was very enthusiastic about that, that whatever it is, isn't necessarily going to kill me. Hospital gave me an appointment for the respiratory clinic today as well (late May). And he gave me some more anti-anxiety medication.
posted by b33j at 9:42 PM on May 4, 2020 [15 favorites]
posted by b33j at 9:42 PM on May 4, 2020 [15 favorites]
This thread is closed to new comments.
What I want is what to do to not keep crying because I think I'm dying before I know I am
I don't know if it's helpful to hear, but honestly maybe you don't need to work so hard to try to stop yourself from doing this. Pre-grieving or anticipatory grief is totally valid and normal. Not too mention something you can't logic your way out of. If it turns out you are wrong and your diagnosis is a relief, you'll know in a few weeks and you will be happy again. If it turns out your suspicions are correct, you will have already made some progress on the necessary work of coming to terms with it and grieving what you might lose.
It sounds like even in the worst case scenario you will still have time to pass through that stage of grief and start planning for how to make the most of your time with your family. Don't compound the pressures on yourself by trying to figure out all out right away.
Maybe to help distract you from obsessive googling of symptoms and prognoses, you might find it useful to turn that energy to googling for stories from people who had a terminal diagnosis, with a few years left with their families, and read about how they came to terms with it, what worthwhile things and small happinesses they still found during that time and so on. There are some quite reassuring stories out there.
posted by lollusc at 2:57 AM on May 4, 2020 [22 favorites]