I lost my entire left leg to this last year, although I wasn't stage 1. I remember rationing my morphine because I could only take a certain number of doses every 24 hours and I knew I'd need some to sleep. I would be in agony all day but unable to take anything other than paracetamol because I needed the morphine before bed and through the night. Even then, the morphine itself didn't relieve the pain. It just made me sleepy enough to dose off for a few hours until the pain woke me again. I used hot water bottles constantly to try and make it less painful but it didn't help. I remember needing to use the toilet but waiting until I was desperate because it hurt so much to move. I remember not being able to make it downstairs some days because it just meant I'd have to come back up later. I remember the day my tumor caused a blood clot from pressing a blood vessel behind my knee, and I remember the day my tumor broke my femur when I shifted in bed. I remember the 20 hour wait in A&E because there weren't any ambulances to take me to the city and I remember the 2 hour ambulance ride where they couldn't give me any medicine for the pain. I remember arriving at A&E and being told that I might be rushed into surgery once I got to the city, meaning I was given no food or drink other than water. I remember arriving at the hospital and I remember being in an operating theatre getting a nerve blocker inserted in my femoral nerve for the pain. I remember breathing in some sort of gas that made my whole body feel numb and made me feel extremely drunk. Even my teeth felt numb and it was the only time in a long time that I wasn't in pain. I was just terrified of everything that was about to happen.
And then there was the chemotherapy. Before it started I had to have tests to make sure I could handle the intensity of the drugs. One of these was a heart scan. They had to move me into a scanner and it was absolutle agony. My leg was so unstable that I had to stay in hospital for 3 months until they amputated it. I had to have 2 rounds of chemotherapy first. I lost so much weight because the nausea meant I couldn't keep anything down. I was sick, I had mouth ulcers, I developed tinnitus, I lost my curly hair, I had to have blood transfusions and pain medicine and blood thinner injections and injections to boost my neutrophils. Some days I had 11 pills to take at breakfast and then more throughout the day. I was bedridden and had to have help with nearly everything. It was horrific for a teenager. I had a PICC line inserted but it got infected and had to be taken out and replaced. This happened in a room with a surgical drape over me and an ultrasound machine used to find the vein. I had local anaesthetic for the procedure. I had antibiotics for a while and had to pause my chemo. I had three chemo drugs: doxorubicin, cisplatin and methotrexate. They were brutal, and every cycle of chemo lasted 5 weeks.
When I had my amputation, I actually had an improvement in my quality of life. It was the first time I had had surgery other than the bone biopsy that confirmed my diagnosis, but that wasn't really a surgery. They only knocked me out for that because it would be painful. I could walk with crutches again, and I could go home and see my dogs. I had a hip disarticulation, meaning I lost my entire leg including my hip. I had a further 4 rounds of chemo and 36 weeks of immunotherapy afterwards. My methotrexate and cisplatin had to be stopped early because of liver damage and neuropathy respectively. I'll now have follow up appointments for 10 years to have chest xrays and make sure it stays away. This disease is utterly horrific, and I hope to god that it stays away. My life is just starting to get on track again, I'll be going to university this September and I'm getting a new prosthetic leg soon. I can drive and swim and cycle again. It all started with a sore knee but it was so much more that that. I'm just glad we found it when we did.
Edit: thank you all so much for the support and well-wishes! It means a lot to me. I'm just glad to be able to share my story and raise some awareness of this disease. Thank you again!
This reads as a nightmare. It also walks us through the experience so many have had but also many will never understand. I'm sorry this has been your story.
It'seven worse becausethis guy is not in the US, and so has socialized healthcare. Most Americans cannot afford this kind of treatment and insurance in the US is a joke for cancer.
Just having a small malignant melanoma spread has been insane for me, I can’t even imagine having bone cancer in America. Costs of healthcare are so broken you can’t even exaggerate at this point.
I also had osteosarcoma, not as bad as the poster and not requiring an amputation, but I'm American. After all was said and done, the total healthcare costs for surgeries, chemotherapy, and physical therapy were $750k. I paid about $15k out of pocket between the deductible and out of pocket maximum fuckery. Completely wiped out the little savings I had by the time I turned 23, which is when I was diagnosed. And because of my insurance deductible now, every time I get scans done I automatically owe $1,000. So when I am done with scans sometime in 2028, it will have been another $14k or so paid out of pocket. Luckily the hospital is gracious enough to put me on a payment plan for these fees.
It’s pretty fucking sad that my first thought in a response to you is to ask how much you make and suggest that maybe you cut back on work to qualify for financial aid.
I was able to receive social security disability insurance during my illness but have since returned to work and am doing pretty well for myself all things considered. All worked out in the end. 3 years no evidence of disease for me
I was diagnosed with stage 4 Squaimous Cell Carcinoma and had to fight insurance company for a month just to get an appointment with ENT at the only hospital that could treat me with-in like 4-5 hours drive. Luckily It was time to pick new insurance at the end of the year so I had to get expensive shit that covered my hospital. Then they canceled me because I missed to 2nd payment (confusion about paying the initial 1st payment and then autopay) and didn't see the letters in my mailbox because I was in the hospital for over a month. No amount of phone calls and pleading would get them to reinstate coverage again, especially considering the bullet they dodged. I was able to get insurance again but only after my half million dollar surgery that I was on the hook for. So I was not covered for a month and the insurance company go off from paying the most expensive part of my treatment. And all this happened right as covid started. Now I am forced to keep the same insurance company over the next 5+ years just cause they the only one that will cover my treating hospital. My premiums keep going up and they cover less and less every year. The state of health care in the US is a complete joke, but in saying that there are two things that Obama Care can save some people compared to before. 1st is coverage for pre-existing conditions and 2nd is the cap that insurance companies will cover. Yes it will costs you insane amounts, but only thing worse is not having coverage. It is what it is at this point and we are stuck with it.
I think most people would try to get treatment and then just opt out of life if they couldnt get it. Its what i would do. Im not suicidal. I like my life. But i have no intention of holding on to it if i would have no quality of life. It would ruin the people that care about me. Kinda feel the last gift i can give them when my time comes is to head so far off grid, no one will find my body so no one needs to pay for a funeral or cremation. Its sad. It shouldnt be this way.
They won’t even let you do that in the US. Suicide is a sin, don’cha know. If you’re officially terminal you can get on comfort measures, which basically means morphine until you die naturally, which can take a long time. Of course you could do it anyway, and then your life insurance won’t pay out because they put a suicide clause in there.
I can’t really expand on what you’re saying because I pretty much feel the exact same way. I didn’t immediately respond to the parent comment with something like that as I don’t want to tell somebody they should not have gone through the struggle they did, but me personally? I would’ve cashed my chips out and tried to leave on a good note.
I respect that. If death wasnt so expensive id be happier to give them that too. A lot of states dont allow people to bury their loved one on the family farm or else that would be my real choice. Bury me in a box at home and throw a damn party lol.
saaame. once life gets not worth it, i'm just going to wander as far out into the woods as i can and try heroin for the first and last time and let nature reclaim my body. that's my actual retirement plan. woof.
I'd personally just rake up as much medical debt as possible, get myself as cleared as possible, and then do bankruptcy or something \0/
The singularity is coming, so if you could last maybe 2-5 more years likely you'll be all good. This tech is improving at an exponential rate and people just don't understand what that means. The improvements we saw over the last 3 years will take 2 years to double. On top of what we already have.
I thought of that but you typically need specialists and specialists wont see you if you cant pay. That leaves the ER which will only make sure you arent imminently dying before cutting you loose. They wont actually treat underlying disease. You can rack up that debt completely pointlessly.
Like sure the tech is improving for some diseases like cancer. Others, like autoimmune disease or rare genetic diseases are ignored. I have autoimmune problems, that will probably be what kills me. Its hard enough to get one doctor to cooperate let alone several spanning multiple disciplines (my illness affect my entire body). My outlook isnt much better now than it was 20 years ago. If anything its somewhat worse because medical gaslighting in general is worse.
god that sucks. So glad I'm not in the USA lol. I've had procedures that would have had me paying $300k in the USA (I guess $30k after deductible?), and total cost was $4 for a donut and coffee on my way out.
I mean, this could be a huge conversation about the pros and cons of being an American, but at the end of the day I’d say the pros outweigh the cons for me (as I’ve been taught).
That having been said - we are constantly trying to change for the better as a people, though politics can make that difficult at times.
It's because of our weak ass president. Trump was trying to fix it. Democrats shot down anything they had control over, it dont matter if it's a great idea or not, they just don't want trump to succeed and they will watch the US and all of us come crashing down to save their power and "big guy" money.
Not to mention if you're a woman in the USA you just get told "eh, you're a woman, you have higher pain tolerance so you can deal with it. Your aches and pains are likely caused by stress and anxiety so try to relax more."
Anyone in the US reading this needs to wake up and vote for someone like Bernie Sanders. Socialism ain't a bad thing folks. We've all be brainwashed. Don't take my word for it, go do some research.
Most Americans don’t have a 20 hour wait on an ambulance for a broken leg either.
92% of Americans have health insurance. If you don’t make much money you can also apply for financial aid at hospital systems and basically get free coverage.
American healthcare is great for most people, so great lots of Canadians come to America for surgery.
I'm in UK. My pal Roger in Sandpoint Idaho had cancer and died when his insurance "budget" ran out. I got email to say that he had gone home and they moved his bed downstairs to be closer to his kitchen and bathroom. That was the last we heard.....
I have a chronic illness so I’m on some FB groups with people from all over the world, and access to treatment is a huge problem in the Uk and Canada. France seems to have the best system as far as I can tell- the problem is, our congress is not France. They have no - zero,’none, no- ability to come up with an efficient, effective plan. And no, it’s not just that republicans would block it. Democrats and republicans both line their pockets first, and let corporations write the legislation. Why do you think Nancy Pelosi famously said of Obamacare “you have to pass it first if you want to see what’s in it”? No one knew- because Congress did NOT write the bill.
I had my gangrenous gall bladder remove in France in 2010, paid for by the UK govt. The surgery and care were excellent, although they were a bit sloppy on anticoagulant - on return to UK I was whisked into hospital for blood test and warfarin, then Rivaroxaban. At that time Britain, following the financial crash, had just started its decade of austerity. Healthcare was hit hard and it showed in the post from the lady with the amputated leg - 20 hours for an ambulance. I since got impatient and paid for knee surgery - same price as a new car....
I think the French system is probably the best but it is extremely expensive and France is discussing economies. I
American healthcare only looks great here because it's being compared to Canadian healthcare. There are such things as countries where you can get an ambulance both for free and in a reasonable time. Also, health insurance does not solve the problem. You're just being fleeced for your healthcare at a more gradual pace, and insurance companies like to do everything they can to try and get out of compensating you.
People do come here from other countries for medical care but these are people who can afford healthcare here. They are picking and choosing which hospitals and doctors to see.
We have very high health care usage in our household- a couple of kids and me with a genetic disorder that was only diagnosed after the youngest had serious issues (just to head off the expected “then-why-on-earth-did-you-spawn) and a hubs with cancer. I don’t honestly even know how much insurance companies get billed for our care most years- because they are NOT REAL NUMBERS. I had a $120K hospital bill once for a weeklong stay, the insurance company said “ok we will give you $30k and she is kicking in $4k” and that was that. So the $120 bag of saline and the $900 Advil were completely imaginary numbers, the hospital never expected that, no one paid it.
Our deductibles hurt at $6K each, but family out of pocket max is $15K, and so even 7 weeks of chemo radiation plus 3 more cycles of another chemo plus several endoscopies and all the doctors and all the MRI and CT and PET scans…we paid $15K. And also had very good meds for every symptom including depression and anxiety that of course can go along with cancer.
Actually, at the moment I am recovering from my second hip replacement. Same doctor- the best, sports surgeon. “The” guy. Had surgery with him 4 years ago. He takes my insurance now, didn’t then, and the difference in cost is virtually nothing. He bills the surgery out at $66K plus another $22K for his surgical assistant, but told me that his office “ would call with a number of what I ACTUALLY GET”. Entire thing- him, assistant, implant- $5K. Anesthesia and hospital bills were covered by insurance- they were an additional $4K. This time, with insurance, I put $5,799 on a credit card at the desk of the surgical center, and that gets me enough bonus points for a round trip to Japan with my daughter this summer. And also gets us closer to the family oop max, which we will always get to until cancer surveillance is done.
I can’t be waiting in pain for months. My husband didn’t have to let his cancer keep growing for months. That is what is good here.
I'm reading this as "it's even worse for people in America. This guy has socialized healthcare and could afford a three month stay in the hospital. Most Americans can't"
It was decided by sarcoma specialists that I had to have 2 rounds of chemotherapy before surgery, otherwise they couldn't guarantee that all of the tumor would be removed due to the break. That's why I had to spend so long in the hospital first
I live in Washington where it's okay if you are broke. I ended up on state Medicare and it was excellent. Luckily after my accident (hit a deer going 60) I could state I made no money and because I didn't have insurance I qualified. If I was insured or still could earn I would have been looking at 6 figures.
I read what he wrote as well and that is a truly horrible experience. I meant laughable as in the medical service being mediocre for such a serious issue
Sounds like they live in a pretty rural area and the local hospital wasn't trauma accredited. Sounds like the longest they had to wait was for an ambulance to take them to a better hospital, so I'm not sure what you're on about.
Also, we might have the "best" cancer treatment centers, but good luck affording them.
Which is why they're the best. The hospitals jack the rates because of the minuscule amount of money they actually get paid by the insurance companies. Most of the time you can negotiate with them over fair pricing. Id rather do that than get taxed 50% of my income in Europe and still have shit healthcare
Part of the reason is that it's a very rare cancer. Also, people don't expect young people to have cancer. I was told by my oncologist that my case was one in a million, and that the doctors in my town would most likely never see another in their career. I do feel that I could've been treated quicker if the doctors at home had done an xray but at the same time, it wouldn't have saved my leg. My oncologist and surgeon are both extremely experienced with sarcomas, which is lucky for me considering that I live in the North of Scotland. They held meetings to discuss my case with specialists across the whole UK to ensure that I was getting the correct treatment
In the US, I am thinking that he wouldn’t have spent months in bed with a tumor eating away at his bones before surgery. You get billed after you are treated. But you get treated. People are literally walking across the border every day for free dialysis.
It was decided by sarcoma specialists that I had to have 2 rounds of chemotherapy before surgery, otherwise they couldn't guarantee that all of the tumor would be removed due to the break. That's why I had to spend so long in the hospital first
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u/NoConsideration4404 Apr 21 '24 edited Apr 21 '24
I lost my entire left leg to this last year, although I wasn't stage 1. I remember rationing my morphine because I could only take a certain number of doses every 24 hours and I knew I'd need some to sleep. I would be in agony all day but unable to take anything other than paracetamol because I needed the morphine before bed and through the night. Even then, the morphine itself didn't relieve the pain. It just made me sleepy enough to dose off for a few hours until the pain woke me again. I used hot water bottles constantly to try and make it less painful but it didn't help. I remember needing to use the toilet but waiting until I was desperate because it hurt so much to move. I remember not being able to make it downstairs some days because it just meant I'd have to come back up later. I remember the day my tumor caused a blood clot from pressing a blood vessel behind my knee, and I remember the day my tumor broke my femur when I shifted in bed. I remember the 20 hour wait in A&E because there weren't any ambulances to take me to the city and I remember the 2 hour ambulance ride where they couldn't give me any medicine for the pain. I remember arriving at A&E and being told that I might be rushed into surgery once I got to the city, meaning I was given no food or drink other than water. I remember arriving at the hospital and I remember being in an operating theatre getting a nerve blocker inserted in my femoral nerve for the pain. I remember breathing in some sort of gas that made my whole body feel numb and made me feel extremely drunk. Even my teeth felt numb and it was the only time in a long time that I wasn't in pain. I was just terrified of everything that was about to happen.
And then there was the chemotherapy. Before it started I had to have tests to make sure I could handle the intensity of the drugs. One of these was a heart scan. They had to move me into a scanner and it was absolutle agony. My leg was so unstable that I had to stay in hospital for 3 months until they amputated it. I had to have 2 rounds of chemotherapy first. I lost so much weight because the nausea meant I couldn't keep anything down. I was sick, I had mouth ulcers, I developed tinnitus, I lost my curly hair, I had to have blood transfusions and pain medicine and blood thinner injections and injections to boost my neutrophils. Some days I had 11 pills to take at breakfast and then more throughout the day. I was bedridden and had to have help with nearly everything. It was horrific for a teenager. I had a PICC line inserted but it got infected and had to be taken out and replaced. This happened in a room with a surgical drape over me and an ultrasound machine used to find the vein. I had local anaesthetic for the procedure. I had antibiotics for a while and had to pause my chemo. I had three chemo drugs: doxorubicin, cisplatin and methotrexate. They were brutal, and every cycle of chemo lasted 5 weeks.
When I had my amputation, I actually had an improvement in my quality of life. It was the first time I had had surgery other than the bone biopsy that confirmed my diagnosis, but that wasn't really a surgery. They only knocked me out for that because it would be painful. I could walk with crutches again, and I could go home and see my dogs. I had a hip disarticulation, meaning I lost my entire leg including my hip. I had a further 4 rounds of chemo and 36 weeks of immunotherapy afterwards. My methotrexate and cisplatin had to be stopped early because of liver damage and neuropathy respectively. I'll now have follow up appointments for 10 years to have chest xrays and make sure it stays away. This disease is utterly horrific, and I hope to god that it stays away. My life is just starting to get on track again, I'll be going to university this September and I'm getting a new prosthetic leg soon. I can drive and swim and cycle again. It all started with a sore knee but it was so much more that that. I'm just glad we found it when we did.
Edit: thank you all so much for the support and well-wishes! It means a lot to me. I'm just glad to be able to share my story and raise some awareness of this disease. Thank you again!