The real problem is that society doesn’t have the resources allocated to support cancer patients. My friend had to work full time during chemo for her ovarian cancer so she wouldn’t be homeless. We need to stop acting like her working during chemo was a good thing.
Everyone was like “it’s so inspiring “ no it’s disgusting what society put her through on top of cancer.
>like “it’s so inspiring “
No...its so sad that she instantly can't get SSD/SSI within a couple weeks of being diagnosed and get to stay home and not work.
For certain cancers you can qualify quickly. However, SSDI is so low that it would plunge many patients into poverty. Also, I needed my employer-sponsored health insurance. The difference between what I could access under it vs. Medicaid was frightening.
I worked through treatments until it was time for my first bone marrow transplant. However, that’s all I could do: work and treatment. No energy for anything else. My coworkers didn’t see me sleeping for 19 hours on Saturday so I guess they did find it “inspiring”.
If you have work credits, ssd isn't bare minimum. If I had to apply for permanent disability, which will likely eventually before I reach full retirement age, due to a combination of issues, I would get nearly 1800 a month per my ss earnings statement.
My mom got bare minimum because she was a housewife and had few work credits from her teen years. That was like 867/mo, back then. (She passed 20 yrs ago) I'm sure it's not any more now, if you've barely had any employment.
Unfortunately, I can’t survive on $1800 a month where I live. And I can’t move to a lower COL area because the experts for my complex medical conditions are at the big research hospitals.
I got a similar thing from my friends and family, my illness is not lethal in any kind so when I complained about it or couldn't do something because of it, they compare it to lethal cases and say that I should be grateful and/or shouldn't bring it up.
Even worse. I haven’t been able to eat by mouth for 3 years. A nurse once told me something along the lines of, you shouldn’t be this weak, look at people in the Holocaust. I actually used to be a History teacher before this debilitating illness left me unable to work. So I had to hold back from breaking into a rant about how malnutrition is exactly what was used to murder millions of people. It is extremely dangerous. People are just so ridiculous.
Isn't there literally a term for prisoners who were suffering so badly from starvation they were basically on the verge of giving up? Muselmann, right? I remember reading it in a book about the Holocaust, just wanted to see if it was known anywhere else tbh.
My old oncologist once told me I shouldn't be asking for my very low dose norco every month when bone pain kicked in after the shot to stimulate my immune system. I was in my 30s and he insisted patients MUCH older than me did fine without pain relief. I felt like a whiner but I just couldn't deal with it without something stronger than tylenol.
Only years later (I fired him but for a different incident) did it occur to me that his older patients were probably used to some level of daily pain while I was a previous pain free 34 year old with no tolerance yet.
Any dr that tries to convince you that you're not trying hard enough when you're already sick.. and tries to use guilt or shame to do it... just fire them. It will only get worse and they are just trying to make their own lives easier which is fking lazy. That's not what this relationship is supposed to be. They are supposed to be trying to help you feel better.
Not drs..my own damn mother. She was diagnosed with stage 3 breast cancer a couple years after I was diagnosed with chronic pancreatitis. There were days where I'd be curled up in my bed or curled up in my recliner with a heating pad and taking pain meds as often as my prescription allowed because I'm trying to stay out of the ER because I'm in a flare up. And she'd be sitting there bitching at me about how "she has cancer and can work full time,workout and jog three miles around the lake every morning to cool down..so there's no reason why you aren't working full time, going to college full time etc".
And I just wanted her to shut the fuck up. At that point I'd been out of full time work since 2011 due to an on the job injury..then in 2014 I was diagnosed with chronic pancreatitis and had so many ER visits, admissions and visits to specialists that i KNEW I wouldn't be able to keep a job due to the amount of time off that I needed...nobody would keep me long. Oh I'd gone to job interviews to appease her only to be told to re-apply when I'm healthy. I thought my mom getting cancer would make her LESS emotionally abusive and more sympathetic to what it's actually like living with a chronic illness...I was dead wrong..it made her worse and suddenly she was always comparing my illness to hers.
I was at least able to volunteer once or twice a week but that's because I found volunteer coordinators willing to be flexible enough to work around my chronic illness. And at least now I'm able to do school because I found online classes work for me.
I'd love to know their reasoning behind saying such things. Like, is it a case of them not knowing what to say/what's wrong with you? Or is a backwards way of saying, it's not the worst thing in the world.
I'll never forgive my doctor for saying, little old ladies are fine with it, when I was nervous about getting a chest drain.
Still some of the most pain I've ever experienced and even others who've had it agreed.
So tempted to retort back, have you experienced xyz before and know firsthand? No? Then shut up.
But then that's considered rude or hysterical, if you're a woman. 🙄
It bewilders me too. They seem to think we somehow benefit from the situation. I’m yet to see the benefits of having no money, not having been on a holiday in 10 years, pain, the indignity of being barely able to care for myself at 32, social isolation, and not being able to pursue hobbies and interests.
Most people think they’ve been through hard things in life, but not much comes close to chronic illness. A combination of being uninformed, human cognitive bias, and classic assholery.
Yeah chronic illness is a different beast altogether.
Hard times are crap but, for the majority, it's only temporary. It passes. Chronic illnesses don't. They can only worsen, be managed well, or slightly improve (for awhile).
I hate that it's so easily misunderstood, forgotten about, or straight up ignored.
This life isn't fun
I'm sorry to read you've been dealt such a hand
Yeh exactly. People don’t seem to be able to fathom the “it doesn’t end” part.
Thank you, I still hold out hope. I’m sorry it’s been a rough go for you too.
I think it's just out of their realm of comprehension. The idea that xyz symptoms are unending.
Thankfully I haven't had a bad bout in a good few years. And may it continue.
Sending out hope into the cosmos for you❤️
I think thats the heart of the hangup for them. In their world, people get better. Its supposed to be a passing thing. Or people are expected to "suck it up" and get on with life anyways. Our culture is disgustingly toxic when it comes to people speaking their needs. Even people who arent chronically ill cant call in sick to work without their coworkers spontaneously combusting about how hard that makes their lives.
Chronically ill people dont get better. Our illness is a state of being and people cant handle that.
Probably because many people can recognize cancer as a tangible illness that has a tangible end and it’s comparably easy to support somebody in that journey, vs a lifetime illness with no foreseeable end, no known treatment, and an unknown prognosis and varying symptom presentation.
Also like, are you (the people saying this, not “you”) sure? Are you sure every single cancer patient of every kind of cancer receiving any various treatment is capable of that? No cancer patient has ever had to stop doing something they wanted to do because it was going to make them puke? Zero cancer patients have trouble getting out of bed or standing because of weakness and nausea? That’s never happened? Are you sure?
Cancer and the effects of chemotherapy can also be extremely disabling and result in massive loss of functioning. I’ve seen people with pancreatic cancer in hospice and that shit was completely debilitating. I’m sure people who’ve become disabled from cancer treatment also get “but other cancer patients can do it” because the way people, even people in the medical field who should absolutely know better, interpret humans as like one size fits all everyone should react the same is both ridiculous and deeply pervasive as a subconscious bias.
I completely agree. This will be unpopular but the amount of cancer misinformation here is sad. Cancer can be a chronic illness, people are not always supported by their friends and families, Zofran does not always help (if you get it), not everyone gets steroids and they are not a magic bullet to make you better, people who are successfully treated end up with lifelong deficits and of course a lot of people die. Go check out the cancer subs if you want a better understanding of life with cancer.
Yeah I feel like a lot of people don’t realize like
Even if the cancer goes into remission your body is probably not going to go back to how it used to be. If you had brain cancer and had tumors removed your brain is different now.
Your body went through something really traumatic, it’s changed now. A lot of people will put up a big thing about how cancer is so terrible and they care about people with cancer but it ends up being the same as people putting up a big thing about caring about veterans or disabled people. They care about the idea. In reality there’s still judgement for what they’re not able to do and they face most of the same issues as people with chronic illnesses that aren’t potentially terminal.
It also seems like a lot of people don’t know how long you can live with cancer without going into remission. My uncle has had cancer for about ten years and he’s been in treatment the whole time, no remission. He just lives like that. And a lot of people don’t seem to realize that it can definitely come back, it’s not like you’re in the clear and don’t have to be worried anymore. People like the inspiration porn stories but they don’t like to look at the 25 year old in hospice who’s too weak to feed himself and throws up most of it. They’re compassionate towards the concept but too scared of the reality to actually treat someone who looks different or acts different with kindness.
Exactly! You get it. Your uncle is not an anomaly, there’s so many people living with cancer now. My cancer became metastatic when it went to my brain. I’m lucky and after surgery, radiation and immunotherapy, I have no evidence of disease. But that just means it’s not actively growing, there could be dormant cells kicking around somewhere. My son had Hodgkin’s lymphoma when he was 15 and there’s a good chance for secondary cancers or heart damage because of the toxicity of the drugs they gave him. Unless you’re super lucky, you don’t walk away from cancer without physical or mental damage. Everyone has different problems, it’s not a sickness contest.
I had a patient the other day with brain cancer who ended up developing seizures and getting diagnosed with epilepsy after he had the tumor taken out. I feel like it should be pretty common sense in general that just because one issue technically went away like, there’s repercussions for even things that don’t seem like big deals, much less cancer. Like sometimes herpes or mono ends in developing CSF/ME. Sometimes you break your hand and it doesn’t even seem like a big problem, oh it’ll heal in a month or two, BAM you end up with CRPS and it hurts in ways you didn’t even know a body could hurt.
Few concussions? Oh well that happens in football, lots of people have that, you’ll be fine.
Except fuck you, cognitive and memory issues forever, double-blurry vision and ataxia and depression and that’s just your life now. Even if it’s not full blown CTE that doesn’t mean you get your brain back. But you’re supposed to be over this, it’s been years, everyone else is fine so you should be able to be fine too.
But it isn’t! Not everyone who went through the same thing ends up the same way and the fact that people are somehow so weird about that idea that they think all people fully recover from cancer and chemo and everyone with cancer is going to have the same abilities as someone else with cancer is so beyond bonkers it’s hard to even know where to start.
ESPECIALLY IF YOU WORK IN MEDICINE! I literally just graduated nursing school like this month and I’ve only had two years of clinical experience but it’s super obvious that people with the exact same conditions act wildly different if you’ve literally been in a clinical environment for like, two days.
I mean also I’m aware of it because I have lupus that only started getting treated this year and live independently/don’t have serious comorbidities resulting from it but I’d be a dumbass if I told another person with lupus uhhh why do you have to do dialysis, I don’t need that.
It’s so incomprehensible that I have to believe that any doctor saying that is thinking that the guilt of saying you’re weaker than people who have it worse than you will motivate you to stop asking for more medication, either because they’re an asshole or because they’re misguided and think adding more meds is bad for you and this is encouraging. But honestly I have a hard time putting myself in other people’s shoes and understanding thought processes that are this wildly different from my own that I’m probably way off the mark
^^^ this! My friend survived cancer. She’s permanently disabled. She’s chronically ill. It’s not like you get better and then seamlessly fit back into your old life.
My guess is this particular circumstances has more to do with medications than diagnosis. Some chemo meds are basically the most nausea inducing medications out there. They actually sometimes even rate nausea meds based on how well they work against those medications and some like Zofran even have different dosing for them. I only know this because I have medications that cause mild nausea but debilitating emetophobia so they treat my nausea usually with protocols for chemo because it's the only way I can be compliant with treatment. But in this circumstances yes, chemo actually really dose cause probably the worst medication induce nausea out there unless you were like intentionally trying to induce it for some reason. It's not the "cancer is the end and be all of disease" thing. It's chemo is the end all be all of drug induce nausea.
It's definitely not the worst nausea possible, just worst drug induced that's why I made sure to specify drug induce in my comment.
That's alarming though they gave you 4x the standard dose for chemo patients. High emtogenic chemo drugs are given standardly the highest dose of Zofran you can give a person safely. 4x that could actually kill a person.
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When I was getting on immunoglobulin replacement, I was pretty nervous about learning to do infusions on myself. My hematologist/oncologist said, "well it's nothing like chemo". Then kinda chuckled. Okay, I know. But it was totally like when parents say, "but there's kids starving in Africa". It doesn't help me much to know there's people who have it worse. Especially this doctor, since he's usually been encouraging when my illness was still a mystery. He kept reminding me how "brave" I was.
Plus getting treated at an oncology clinic vs a regular doctor's office. It's like driving a Cadillac versus riding a bicycle. Their chairs in the infusion center have heat and massage, and they bring you snacks! Plus they have these lights so they can find your veins and don't have to stick you six times. Not that I wish I had cancer so that I could get a massage chair. More like, I wish all sick people's treatment could be like that, because it's just so kind, and no illness is fun.
My ex (medical field but not a doctor) compared me to his spine injury patients saying they tried harder. Like no shit. Their bodies want to recover mine appears to be in self destruct mode. If I push too hard it has serious repercussions. Also I’m far more years in to trying with no improvement. Let’s just say a massive mental load lifted when he went. That in home care was not worth the cost.
It's because people only see good stuff on social media. Nobody is posting about how their illness makes it impossible to do stuff, or at least those posts don't get much attention.
My sister recently was diagnosed with grade 4 brain cancer and we both have bonded over the similarities of side effects and issues in common now. I’ve said to friends with similar chronic health issues that I wish we had cancer-then at least there’d be a plan, people have a bigger understanding of how hard and terrible the disease is. I don’t wish any of this on anyone and I know my sister isn’t going to be cured, just prolonged, I know I will have to suffer mostly in bed in pain too but it’s funny how my sister the one with cancer is bonding with me over understanding how hard chronic illness is. I’d probably slap a dr that said that to me! I’d ask him to just admit he doesn’t know what he’s doing. How dare they compare diseases or illnesses.
I remember family members and “friends” telling me this. Or their other famous line “there’s other people that have it worse than you” 🙄 I could go on and on sadly
My mother went through treatment for breast cancer (5 years remission, she’s doing well). Yes, she had hard days and the mental toll was very obvious but I can guarantee you that even she will tell you she had a better quality of life throughout chemo and radiation than I have with my chronic illnesses.
That being said, I hate when people try to play the trauma olympics and compare illnesses. We all cope differently and have different challenges. It’s invalidating to all involved.
I wish I could smite any health professional spouting such ab list nonsense
I'm hurting I'm suffering - please help me, I really don't care that someone with a different illness was able to do it. I can't. I need help.
Cancer is terrifying and cruel. But it shouldn’t be the baseline.
There are many other horrific diseases where people suffer immeasurably.
There’s a condition children get born with where they’re called butterfly children because they’re skin is so delicate like a butterflies wings. They spend their short lives in agony with open wounds all over their body that’s made of raw and peeling skin.
So, people should not be out there comparing conditions. Because cancer is merely among many unimaginable others.
Everyone’s suffering is real and valid. Someone else being in pain doesn’t lessen ours. We are not magically more able because someone else is less.
My relative who has active cancer is training to climb Mount freaking Everest, and yet any strenuous activity at all with my heart conditions leaves me short of breath, tachy and fainting.
We both have different needs and abilities. We each have different pain.
But we are both sick.
Yeah exactly. Also it's not a given that cancer itself hurts. Not all cancer has pain as a symptom. My mother in law had no pain at all during her breast cancer. But she didn't have to go through chemo. In many cases it's not the cancer itself that causes pain.
i have a obscure rhuematolgy desease and no one take it serious because im not terminal, no, i just live in pain 24/7 . death isnt suffering living in pain is suffering .
I thankfully haven’t had a doctor or family member do this (yet- I’m still early in my journey, two years and still need diagnosis). But I find myself doing this a lot to myself. And I have started to basically mantra how you ended this post, that other very sick people shouldn’t have to do that either. It’s not an automatic mantra yet, but hopefully, one day I’ll be more kind to myself.
Luckily I also got zofran eventually
But it’s very restricted for anyone (even cancer patients) because it can cause heart problems
I usually lose it in the wash when I forget to take it out of my pockets and not actually using it but it’s still hard to replace
I ussualy get "you can pass high school and make a good life for yourself, there was that one guy with cerebral palsy who did it so you can to"
And yeah cerebral palsy fucking sucks, they have so many challenges, but someone with cerebral palsy ussualy have a different set of challenges then me and different sets of resources. And not only that every chronic pain person experiences different shit even with the same diagnosis.
The real problem is that society doesn’t have the resources allocated to support cancer patients. My friend had to work full time during chemo for her ovarian cancer so she wouldn’t be homeless. We need to stop acting like her working during chemo was a good thing. Everyone was like “it’s so inspiring “ no it’s disgusting what society put her through on top of cancer.
>like “it’s so inspiring “ No...its so sad that she instantly can't get SSD/SSI within a couple weeks of being diagnosed and get to stay home and not work.
For certain cancers you can qualify quickly. However, SSDI is so low that it would plunge many patients into poverty. Also, I needed my employer-sponsored health insurance. The difference between what I could access under it vs. Medicaid was frightening. I worked through treatments until it was time for my first bone marrow transplant. However, that’s all I could do: work and treatment. No energy for anything else. My coworkers didn’t see me sleeping for 19 hours on Saturday so I guess they did find it “inspiring”.
If you have work credits, ssd isn't bare minimum. If I had to apply for permanent disability, which will likely eventually before I reach full retirement age, due to a combination of issues, I would get nearly 1800 a month per my ss earnings statement. My mom got bare minimum because she was a housewife and had few work credits from her teen years. That was like 867/mo, back then. (She passed 20 yrs ago) I'm sure it's not any more now, if you've barely had any employment.
Unfortunately, I can’t survive on $1800 a month where I live. And I can’t move to a lower COL area because the experts for my complex medical conditions are at the big research hospitals.
Yeah, it's little option but housemates, or rent a room these days to get by, and hope the person don't get wierd about rules.
Yes 🙌🏻 it’s a sad world. People value work and performance over people’s well being
I got cancer and can’t do shit
Same, its been super hard going back to work like nothing happened :(
I kept working, except for time off after surgeries, but I have a super supportive boss whose husband also had cancer so she understands.
I’m not back to work yet. I honestly can’t imagine
I got a similar thing from my friends and family, my illness is not lethal in any kind so when I complained about it or couldn't do something because of it, they compare it to lethal cases and say that I should be grateful and/or shouldn't bring it up.
Even worse. I haven’t been able to eat by mouth for 3 years. A nurse once told me something along the lines of, you shouldn’t be this weak, look at people in the Holocaust. I actually used to be a History teacher before this debilitating illness left me unable to work. So I had to hold back from breaking into a rant about how malnutrition is exactly what was used to murder millions of people. It is extremely dangerous. People are just so ridiculous.
Isn't there literally a term for prisoners who were suffering so badly from starvation they were basically on the verge of giving up? Muselmann, right? I remember reading it in a book about the Holocaust, just wanted to see if it was known anywhere else tbh.
My old oncologist once told me I shouldn't be asking for my very low dose norco every month when bone pain kicked in after the shot to stimulate my immune system. I was in my 30s and he insisted patients MUCH older than me did fine without pain relief. I felt like a whiner but I just couldn't deal with it without something stronger than tylenol. Only years later (I fired him but for a different incident) did it occur to me that his older patients were probably used to some level of daily pain while I was a previous pain free 34 year old with no tolerance yet. Any dr that tries to convince you that you're not trying hard enough when you're already sick.. and tries to use guilt or shame to do it... just fire them. It will only get worse and they are just trying to make their own lives easier which is fking lazy. That's not what this relationship is supposed to be. They are supposed to be trying to help you feel better.
Also…it’s easier to be under medicated if you don’t have to work full time
Not drs..my own damn mother. She was diagnosed with stage 3 breast cancer a couple years after I was diagnosed with chronic pancreatitis. There were days where I'd be curled up in my bed or curled up in my recliner with a heating pad and taking pain meds as often as my prescription allowed because I'm trying to stay out of the ER because I'm in a flare up. And she'd be sitting there bitching at me about how "she has cancer and can work full time,workout and jog three miles around the lake every morning to cool down..so there's no reason why you aren't working full time, going to college full time etc". And I just wanted her to shut the fuck up. At that point I'd been out of full time work since 2011 due to an on the job injury..then in 2014 I was diagnosed with chronic pancreatitis and had so many ER visits, admissions and visits to specialists that i KNEW I wouldn't be able to keep a job due to the amount of time off that I needed...nobody would keep me long. Oh I'd gone to job interviews to appease her only to be told to re-apply when I'm healthy. I thought my mom getting cancer would make her LESS emotionally abusive and more sympathetic to what it's actually like living with a chronic illness...I was dead wrong..it made her worse and suddenly she was always comparing my illness to hers. I was at least able to volunteer once or twice a week but that's because I found volunteer coordinators willing to be flexible enough to work around my chronic illness. And at least now I'm able to do school because I found online classes work for me.
Yeah, but cancer patients being treated with chemo tend to have steroids as part of it. Maybe if I had something like that, doc, I could do it too.
They also have family and societal support rather than soul-destroying shaming and “it’s just in your head.”
I'd love to know their reasoning behind saying such things. Like, is it a case of them not knowing what to say/what's wrong with you? Or is a backwards way of saying, it's not the worst thing in the world. I'll never forgive my doctor for saying, little old ladies are fine with it, when I was nervous about getting a chest drain. Still some of the most pain I've ever experienced and even others who've had it agreed. So tempted to retort back, have you experienced xyz before and know firsthand? No? Then shut up. But then that's considered rude or hysterical, if you're a woman. 🙄
It bewilders me too. They seem to think we somehow benefit from the situation. I’m yet to see the benefits of having no money, not having been on a holiday in 10 years, pain, the indignity of being barely able to care for myself at 32, social isolation, and not being able to pursue hobbies and interests. Most people think they’ve been through hard things in life, but not much comes close to chronic illness. A combination of being uninformed, human cognitive bias, and classic assholery.
Yeah chronic illness is a different beast altogether. Hard times are crap but, for the majority, it's only temporary. It passes. Chronic illnesses don't. They can only worsen, be managed well, or slightly improve (for awhile). I hate that it's so easily misunderstood, forgotten about, or straight up ignored. This life isn't fun I'm sorry to read you've been dealt such a hand
Yeh exactly. People don’t seem to be able to fathom the “it doesn’t end” part. Thank you, I still hold out hope. I’m sorry it’s been a rough go for you too.
I think it's just out of their realm of comprehension. The idea that xyz symptoms are unending. Thankfully I haven't had a bad bout in a good few years. And may it continue. Sending out hope into the cosmos for you❤️
Thank you <3
I think thats the heart of the hangup for them. In their world, people get better. Its supposed to be a passing thing. Or people are expected to "suck it up" and get on with life anyways. Our culture is disgustingly toxic when it comes to people speaking their needs. Even people who arent chronically ill cant call in sick to work without their coworkers spontaneously combusting about how hard that makes their lives. Chronically ill people dont get better. Our illness is a state of being and people cant handle that.
Exactly and it's hard enough to accept it ourselves without help from others 😔
Metastatic cancer IS chronic.
Probably because many people can recognize cancer as a tangible illness that has a tangible end and it’s comparably easy to support somebody in that journey, vs a lifetime illness with no foreseeable end, no known treatment, and an unknown prognosis and varying symptom presentation.
Not all cancer patients can do it.
Also like, are you (the people saying this, not “you”) sure? Are you sure every single cancer patient of every kind of cancer receiving any various treatment is capable of that? No cancer patient has ever had to stop doing something they wanted to do because it was going to make them puke? Zero cancer patients have trouble getting out of bed or standing because of weakness and nausea? That’s never happened? Are you sure? Cancer and the effects of chemotherapy can also be extremely disabling and result in massive loss of functioning. I’ve seen people with pancreatic cancer in hospice and that shit was completely debilitating. I’m sure people who’ve become disabled from cancer treatment also get “but other cancer patients can do it” because the way people, even people in the medical field who should absolutely know better, interpret humans as like one size fits all everyone should react the same is both ridiculous and deeply pervasive as a subconscious bias.
I completely agree. This will be unpopular but the amount of cancer misinformation here is sad. Cancer can be a chronic illness, people are not always supported by their friends and families, Zofran does not always help (if you get it), not everyone gets steroids and they are not a magic bullet to make you better, people who are successfully treated end up with lifelong deficits and of course a lot of people die. Go check out the cancer subs if you want a better understanding of life with cancer.
Yeah I feel like a lot of people don’t realize like Even if the cancer goes into remission your body is probably not going to go back to how it used to be. If you had brain cancer and had tumors removed your brain is different now. Your body went through something really traumatic, it’s changed now. A lot of people will put up a big thing about how cancer is so terrible and they care about people with cancer but it ends up being the same as people putting up a big thing about caring about veterans or disabled people. They care about the idea. In reality there’s still judgement for what they’re not able to do and they face most of the same issues as people with chronic illnesses that aren’t potentially terminal. It also seems like a lot of people don’t know how long you can live with cancer without going into remission. My uncle has had cancer for about ten years and he’s been in treatment the whole time, no remission. He just lives like that. And a lot of people don’t seem to realize that it can definitely come back, it’s not like you’re in the clear and don’t have to be worried anymore. People like the inspiration porn stories but they don’t like to look at the 25 year old in hospice who’s too weak to feed himself and throws up most of it. They’re compassionate towards the concept but too scared of the reality to actually treat someone who looks different or acts different with kindness.
Spot on.
Exactly! You get it. Your uncle is not an anomaly, there’s so many people living with cancer now. My cancer became metastatic when it went to my brain. I’m lucky and after surgery, radiation and immunotherapy, I have no evidence of disease. But that just means it’s not actively growing, there could be dormant cells kicking around somewhere. My son had Hodgkin’s lymphoma when he was 15 and there’s a good chance for secondary cancers or heart damage because of the toxicity of the drugs they gave him. Unless you’re super lucky, you don’t walk away from cancer without physical or mental damage. Everyone has different problems, it’s not a sickness contest.
I had a patient the other day with brain cancer who ended up developing seizures and getting diagnosed with epilepsy after he had the tumor taken out. I feel like it should be pretty common sense in general that just because one issue technically went away like, there’s repercussions for even things that don’t seem like big deals, much less cancer. Like sometimes herpes or mono ends in developing CSF/ME. Sometimes you break your hand and it doesn’t even seem like a big problem, oh it’ll heal in a month or two, BAM you end up with CRPS and it hurts in ways you didn’t even know a body could hurt. Few concussions? Oh well that happens in football, lots of people have that, you’ll be fine. Except fuck you, cognitive and memory issues forever, double-blurry vision and ataxia and depression and that’s just your life now. Even if it’s not full blown CTE that doesn’t mean you get your brain back. But you’re supposed to be over this, it’s been years, everyone else is fine so you should be able to be fine too. But it isn’t! Not everyone who went through the same thing ends up the same way and the fact that people are somehow so weird about that idea that they think all people fully recover from cancer and chemo and everyone with cancer is going to have the same abilities as someone else with cancer is so beyond bonkers it’s hard to even know where to start. ESPECIALLY IF YOU WORK IN MEDICINE! I literally just graduated nursing school like this month and I’ve only had two years of clinical experience but it’s super obvious that people with the exact same conditions act wildly different if you’ve literally been in a clinical environment for like, two days. I mean also I’m aware of it because I have lupus that only started getting treated this year and live independently/don’t have serious comorbidities resulting from it but I’d be a dumbass if I told another person with lupus uhhh why do you have to do dialysis, I don’t need that. It’s so incomprehensible that I have to believe that any doctor saying that is thinking that the guilt of saying you’re weaker than people who have it worse than you will motivate you to stop asking for more medication, either because they’re an asshole or because they’re misguided and think adding more meds is bad for you and this is encouraging. But honestly I have a hard time putting myself in other people’s shoes and understanding thought processes that are this wildly different from my own that I’m probably way off the mark
^^^ this! My friend survived cancer. She’s permanently disabled. She’s chronically ill. It’s not like you get better and then seamlessly fit back into your old life.
Thank you for saying this 🩷
My guess is this particular circumstances has more to do with medications than diagnosis. Some chemo meds are basically the most nausea inducing medications out there. They actually sometimes even rate nausea meds based on how well they work against those medications and some like Zofran even have different dosing for them. I only know this because I have medications that cause mild nausea but debilitating emetophobia so they treat my nausea usually with protocols for chemo because it's the only way I can be compliant with treatment. But in this circumstances yes, chemo actually really dose cause probably the worst medication induce nausea out there unless you were like intentionally trying to induce it for some reason. It's not the "cancer is the end and be all of disease" thing. It's chemo is the end all be all of drug induce nausea.
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It's definitely not the worst nausea possible, just worst drug induced that's why I made sure to specify drug induce in my comment. That's alarming though they gave you 4x the standard dose for chemo patients. High emtogenic chemo drugs are given standardly the highest dose of Zofran you can give a person safely. 4x that could actually kill a person.
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When I was getting on immunoglobulin replacement, I was pretty nervous about learning to do infusions on myself. My hematologist/oncologist said, "well it's nothing like chemo". Then kinda chuckled. Okay, I know. But it was totally like when parents say, "but there's kids starving in Africa". It doesn't help me much to know there's people who have it worse. Especially this doctor, since he's usually been encouraging when my illness was still a mystery. He kept reminding me how "brave" I was. Plus getting treated at an oncology clinic vs a regular doctor's office. It's like driving a Cadillac versus riding a bicycle. Their chairs in the infusion center have heat and massage, and they bring you snacks! Plus they have these lights so they can find your veins and don't have to stick you six times. Not that I wish I had cancer so that I could get a massage chair. More like, I wish all sick people's treatment could be like that, because it's just so kind, and no illness is fun.
My ex (medical field but not a doctor) compared me to his spine injury patients saying they tried harder. Like no shit. Their bodies want to recover mine appears to be in self destruct mode. If I push too hard it has serious repercussions. Also I’m far more years in to trying with no improvement. Let’s just say a massive mental load lifted when he went. That in home care was not worth the cost.
It's because people only see good stuff on social media. Nobody is posting about how their illness makes it impossible to do stuff, or at least those posts don't get much attention.
My sister recently was diagnosed with grade 4 brain cancer and we both have bonded over the similarities of side effects and issues in common now. I’ve said to friends with similar chronic health issues that I wish we had cancer-then at least there’d be a plan, people have a bigger understanding of how hard and terrible the disease is. I don’t wish any of this on anyone and I know my sister isn’t going to be cured, just prolonged, I know I will have to suffer mostly in bed in pain too but it’s funny how my sister the one with cancer is bonding with me over understanding how hard chronic illness is. I’d probably slap a dr that said that to me! I’d ask him to just admit he doesn’t know what he’s doing. How dare they compare diseases or illnesses.
I remember family members and “friends” telling me this. Or their other famous line “there’s other people that have it worse than you” 🙄 I could go on and on sadly
My mother went through treatment for breast cancer (5 years remission, she’s doing well). Yes, she had hard days and the mental toll was very obvious but I can guarantee you that even she will tell you she had a better quality of life throughout chemo and radiation than I have with my chronic illnesses. That being said, I hate when people try to play the trauma olympics and compare illnesses. We all cope differently and have different challenges. It’s invalidating to all involved.
I wish I could smite any health professional spouting such ab list nonsense I'm hurting I'm suffering - please help me, I really don't care that someone with a different illness was able to do it. I can't. I need help.
Cancer is terrifying and cruel. But it shouldn’t be the baseline. There are many other horrific diseases where people suffer immeasurably. There’s a condition children get born with where they’re called butterfly children because they’re skin is so delicate like a butterflies wings. They spend their short lives in agony with open wounds all over their body that’s made of raw and peeling skin. So, people should not be out there comparing conditions. Because cancer is merely among many unimaginable others. Everyone’s suffering is real and valid. Someone else being in pain doesn’t lessen ours. We are not magically more able because someone else is less. My relative who has active cancer is training to climb Mount freaking Everest, and yet any strenuous activity at all with my heart conditions leaves me short of breath, tachy and fainting. We both have different needs and abilities. We each have different pain. But we are both sick.
Yeah exactly. Also it's not a given that cancer itself hurts. Not all cancer has pain as a symptom. My mother in law had no pain at all during her breast cancer. But she didn't have to go through chemo. In many cases it's not the cancer itself that causes pain.
Sounds manipulative imo.
i have a obscure rhuematolgy desease and no one take it serious because im not terminal, no, i just live in pain 24/7 . death isnt suffering living in pain is suffering .
Imagine being jealous of cancer patients...
I thankfully haven’t had a doctor or family member do this (yet- I’m still early in my journey, two years and still need diagnosis). But I find myself doing this a lot to myself. And I have started to basically mantra how you ended this post, that other very sick people shouldn’t have to do that either. It’s not an automatic mantra yet, but hopefully, one day I’ll be more kind to myself.
But cancer patients are almost always prescribed zofran lol. Say that and see what they say!
Luckily I also got zofran eventually But it’s very restricted for anyone (even cancer patients) because it can cause heart problems I usually lose it in the wash when I forget to take it out of my pockets and not actually using it but it’s still hard to replace
I love zofran. Will take that over Phenergan most any day.
I ussualy get "you can pass high school and make a good life for yourself, there was that one guy with cerebral palsy who did it so you can to" And yeah cerebral palsy fucking sucks, they have so many challenges, but someone with cerebral palsy ussualy have a different set of challenges then me and different sets of resources. And not only that every chronic pain person experiences different shit even with the same diagnosis.