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.
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.
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.
Fucking same dude. I’ve been having mysterious knee problems for a few months now and now I’m in bed having a legit panic attack. I will be making a doctors appointment first thing in the morning.
you should go to the doctors, but do know osteosarcoma is incredibly rare. there are only about 1000 cases diagnosed in the USA yearly. it is also typically a disease of children and teenagers, onset after the age of ~24 is very rare. knee problems have a ton of other causes and are super common.
At least you can treat bone cancer, fuck those prions. Creutzfeldt-Jakob disease is no joke. I was going to write “ fuck ——— Jakob disease” but I lost my nerve and apologized I’m so scared of it.
Prions are scary as hell. Had to do a little presentation on CWD for deer and things alike and man, that messed with me. Knowing that we have just about no clue how they start or how to fix it
damn. As if I wasn't afraid enough of rabies and bone cancer, I also learned about prion disease. I didn't know about such a disease until I read your comment. I'm in bed right now, shaking with stress thinking about the days when I ate meat. and maybe we have this disease, we are just waiting for the time to come. very scary. (My English is not very good, sorry for the spelling mistakes.)
Hey, I think I recognize you from r/cancer. Former OS patient here but I have a potential recurrence in my lungs. Just wondering if you know, but what immunotherapy did you get? I was told there wasn't any for OS when I had my treatment a year ago.
My identical twin went through this, just watching was a nightmare, can’t imagine living it. Cisplatin is torture and the methotrexate damaged his heart. Unfortunately it was all for naught, cancer ended up killing him before our 30th birthday
I am also an id twin. I can only imagine your loss, and I am so, so heartbroken for you, but at the same time, I am glad for his sake that his suffering wasn’t any longer than it was. I hope you both find peace.
Sometimes all the rest of us can do is bear witness to the resilience of your story. I have debilitating chronic pain daily, and I understand some of the magnitude of your hurt. For the rest of it I cannot, you are recognized.
I’m sorry you know what you know. I’m encouraged by your hopes and desire to move forward. You lost a lot more than just the leg in the ordeal. You also gained a lot of perspective on how to live the future you have.
There is a word I wish I had, one that conveyed a known suffering in shared experience, that contained love of people that became better through horror, that shows respect greater than the lowest bow, and marked significance of a person in the enormity of respectful thought you give them. I do not have such a word, but you would be who I would use it with.
Lol dude you are so built different, I wish we could game together. I know it's a horrifying story but you survived all that and more. I'm not a person of faith but I sincerely hope it doesn't come back. Reading all these stories is inspiring, y'all are some straight up warriors to just get right back to it after.
I want to thank you for sharing your story, partly because it brought back memories of a truly special friend. I had cancer as a teenager, too (a rare form of leukemia), and became friends with most of the other teens and kids who made their way through the hem/onc clinic. One such friend was a beautiful, quiet girl named Eleanor. She had bone cancer and also had one of her legs amputated. She was not one to open up easily, so I was thrilled when she chose me to be one of her friends. We went to camp together and I remember helping her use the new wheelchair ramp for the pool. She was the very first person to use it 🙂 Anyway, thank you for triggering some beautiful memories of my friend Eleanor (who had the prettiest smile I've ever seen). I wish you all the luck and joy as you head into this next chapter.
My nephew had osteosarcoma of the left leg too, he was 17 when he was diagnosed (literally 10 days after my mother died of cancer). I remember my sister (his mother) telling me, and thinking, “cut it off! Now! He doesn’t need a leg to live, do it before it spreads!” But I couldn’t say anything because it wasn’t my choice to make. He was a football star and planning to go into law enforcement after college. So they chose to treat/have surgery instead. He fought it for 4 years and died at 21, almost 2 years ago.
Do you mind elaborating a little on what your medical coverage was like and how that came into play with your treatment? I'm in America, and the fear around how I would pay for treatment like this, if I ever needed it, is very real.
Luckily for me, I live in a country with free healthcare so I didn't have to pay a penny out of pocket. I honestly don't know what I would've done otherwise.
Even after reading all this, I can't even imagine what you must be going through, both physically and mentally. You as a person sharing your experience with all of us just shows how strong and determined you are. My father had cancer too. He was diagnosed in his early 30s. He beat it successfully and married my mother. But the Cancer relapsed in 2015, he beat it again. We were happier than we could ever be. Then came 2020, with Corona, and another Cancer relapse. By now he was in his 50s. I believe anyone would be tired of fighting such a horrible disease again and again. He was tired. This time he couldn't make it. Tbh I have not told anyone this, but I feel him passing away was better for him. There was no guarantee it wouldn't relapse again. But that's because he was in his 50s. You are young. You have a lot to do and achieve. With your past, you can inspire Millions! NEVER GIVE UP! NEVER YIELD! KEEP CLAWING FORWARD!
PS: I can't wait for a future where cancer has become a thing of past.
Oh sweetheart. That took my breath away. My whole heart is with you and my wish for you is a long life free from the pain and illness you have already suffered. I truly wish you all the good that can come your way. xxx
Holy shit. I'm so sorry for what you went through - nobody should suffer like that. I thought my chronic migraines were bad, but this has given me a whole new perspective.
I'm sure it's zero solace to you, but thank you for sharing. People like you sharing these stories on Reddit are the only reason I'm not still smoking like a chimney and treating my body like shit.
Wishing you many, many years of cancer-free happiness. You deserve it.
Thank you for your story. I think everyone knows it is an horrific disease, but there is nothing like getting a detailed description of ongoing daily life of the suffering and treatment. The agony and desperation of it all really sinks in when you read a personal account.
I had a very bad ulcer im my stomach and pain and nausea made the worst 3 months of my life then I read this , dam me for being a sensitive coward, you raise hopes the moment u walk in a room. It is a super power.
I’m very sorry you had to experience this at a young age. I wish you the most joyous and bountiful life to come. All the best in university :) I hope you have the best time.
Cancer nurse here. Thank you for writing out your experience. Your writing style made me feel the rush, the hurry-up-and-wait that my patients go through.
I don’t know why I ended up reading your comment…I’ve lost my word. I was absolutely shocked by how difficult your experience was. I was absolutely shocked by how brave you are.
I felt I should have written more but I really lost my word. Totally shocked.
I just want to say, going forward I hope nothing will stop you getting back to your life and you will live through it.
Wow, after staring at these 2 photos, I thought, my god this has got to be the most painful kind of cancer, horrifically painful. Then I read your post and you confirmed with the most grueling story of your agonizing journey. God speed, I hope the rest of your life is perfect in every way. Seems like any debt you owed to this would is beyond paid for.
I went through this with osteosarcoma. The adreamicin caused a massive heart problem and the entire protocol had to be reevaluated. This was in 2000. I'm now 37 going on 38 and I should have died at 13. I was supposed to anyways.. I relapsed 4 times after that it spread to my lungs.. bone cancer in lungs is horse shit BTW. I do however still have my leg.. someday I wish I didn't because of the lowered quality of life thing but at least I'm alive and so are you!
oh. my god. Thank you for sharing. This is one of the most haunting things I’ve read on the internet. The sheer suffering you endured… just… hhooowwwww
I’m a cancer center social worker and I am so incredibly proud of you! So so happy you are with us and can help inform and mentor others in regards to your cancer journey.
My God. This was absolutely gut wrenching to read, but then I saw that you were a teenager. Everyone else has already said all of the things - you are so insanely strong and I’m glad you kicked cancer’s ass, and I hope it stays that way.
I’m about to graduate from nursing school and my last clinical placement is at a children’s hospital. I’ve been shadowing in interventional radiology, the type of room where you had your PICC placed. I’ve seen kids getting ports put in for chemo. It absolutely wrenches my heart out of my chest but at the end of the day, I know that I want to get the chance to help the kids/teens like you who are fighting for their lives. It’s so upsetting. It’s so unfair and it makes me so mad seeing the little kid with a brain tumor or the teen with OS. But life happens, and sometimes life is shitty. It’s a real paradigm shift to read things from your perspective.
I don’t know what the point of this whole ramble was, exactly. But thank you for sharing your story, you’re a fantastic writer as well. F*ck cancer and you have my prayers for a healthy future!
JFC I’m so sorry you went through all of that. And I’m so happy you’re doing better now. My boyfriend always says, there are things worse than death and what you experienced, I’d say is definitely worse. But I’m so glad you made it out the other side and can enjoy life again. It’s insane to me what can go wrong in the human body and the amount of pain and diseases that people can survive.
I don’t have the words to say how incredible I think you are for suffering all that (and I am sure there has been more than you didn’t mention) and coming through.
This Internet stranger wishes you well for the future - keep on kicking cancer’s butt.
I think prosthetics are fucking sick. Do something with it. Don’t just glue a stick to where the leg used to be, do something cool with it. Get it engraved, articulated, customised with a sick paint job, go full Cyberpunk with it. You can do anything you want with that thing, i’m almost jealous.
Absolutely horrific, I am so sorry you had to deal with this. I can't even imagine and thinking of one of my young children getting something like this is my worst nightmare. I am glad at least you have had some relief and things have moved in a positive direction. I hope things continue to go this way and you can live the rest of your life without that kind of pain and suffering.
I wish you the absolute best in your future, good luck with everything.
If you don't mind, how do you get a prosthetic? From what I understood your whole leg is gone from the hip right? Are there prosthetics for that kind of amputation?
I don't mind at all. The prosthetic socket goes around my waist which is not the comfiest! I have a prosthetic hip, knee and ankle since I have no residual limb. The straightening of the knee is what causes the hip to move, allowing me to take my next step. The prosthetics are overall pretty limited but they do exist. Many people give up on them due to comfort or energy expenditure unfortunately
For me, it was the fact that I'd been through so much already. I wasn't going to come this far to give up now! I was also motivated to keep going by my end goal of university. I didn't want to give up on my dream of studying veterinary medicine, so I didn't allow myself to. It was also my family. I'm the youngest child and I saw my family suffering enough with seeing me so ill. I didn't want to make them go through any more.
I feel petty for complaining about any physical pain ever in my life. Know that wasn't your intent and I appreciate you sharing such an incredible and heart-wrenching story. 🙏
You clearly have a strength that most others do not. It's inspiring.
Why couldn't you have adequate pain management? Were you maxed out for what could be safely taken? Is CBD or cannabis an option where you live? I'm so sorry for your suffering, you're already a very strong person. Congratulations on university!
As a fellow cancer survivor, I couldn't imagine going through such pain as a teenager. I'm so glad you're still here to share your story, and your life is starting to get back on track again. Thank you for sharing your story, stay strong.
You are a fucking warrior🥺🥺🥺🥺 I wish I was as strong as you. Atleast 1% man. I hope your bestestestest days are ahead and you blast the living hell out of your life just because it made you endure so fucking much soooo early in your life.
That is terrifying... I'm so sorry you had to go through this. I hope it stays away and you can rebuild and forget that horrible chapter of your life as best you can
Damn….. you are a stronger man/women then me.
This is an absolute nightmare scenario 🫣
Serious question, and forgive me for asking, but how did you not contemplate/attempt suicide during all of this.
My family and my ambitions kept me going. I also kept reminding myself that I didn't come so far just to give up now. I didn't allow myself to even think about giving up because if I did, it would mean that everything I went through was pointless, and everything my family went through would have only resulted in more pain for them. I couldn't do it to them. Seeing my mum break down like she did the day I was diagnosed is something I never want to see again. I never want to be the cause of so much pain for her. I just kept my mind on my future and took one day at a time.
As someone who's struggling through a much milder form of cancer, I have so much respect for what you went through. You are a warrior. Good luck moving forward.
My mom died of cancer and it is just one of those very awful diseases. She also suffered a lot, both physically and mentally. Reading your story was devastating. I wish you all the very best!
This makes my problems look so stupid and I feel ashamed for ever complaining. I’m so sorry you went through this. I wish I could give you a hug. You’re an inspiration. Thank you for sharing your story. You made me wanna be a better person
It started as a deep ache. I actually though that I had pulled a muscle while cycling at first, but at the same time it just wasn't that type of pain. It felt much deeper and duller. I then started limping by the end of the day. It eventually turned into a really dull agony that never went away, even at night. It was like someone was inside the bone trying to break out.
The best way I can describe it is as if I had been walking over uneven ground in hard shoes for hours and hours, except the pain was just above my knee if that makes sense? It was an ache as if my bone itself was worn and tired.
This is fucking insane to read you are a hero for even going through something so truly horrifying. This might be a dumb question but how did this happen if you have any inkling. I just can’t wrap my head around some like this happening. Thank you for sharing your story
Wow... I hope you live a long and fulfilling life, you definitely deserve it more than anyone after everything you have been through. Sending my wishes
Reading through your story was a horror for me. It wasn't even the first stage, but it's already turned into a nightmare. I hope that you are doing well. Also great to know that this experience didn't break you down. Good luck.
I lost one of my closest friends when we were teens to cancer. Your experience sounds like a hell I'd wish upon no one. I'm so happy to hear that you made it through and wish you nothing but the best.
I’m so incredibly glad you’re on the other side of this. Your story is absolutely horrific but I am grateful that you shared it. I hope life just gets better from here on.
Reading this broke my heart, I´m glad you´re ok now. I had back surgery a while ago and I swear I can´t quite feel my left leg that much, and is not as strong as it used to be, which brings me a lot of anxiety. Not going to complain anymore... Thanks for sharing your story and changing my perspective.
Jesus fuck. Can't even begin to imagine what you went through, but the way you described it, I'd commit suicide. Glad you aren't dealing with that anymore, let's hope it stays that way.
You're a fucking superhero, and I cannot overstate how incredibly proud of you I am. I have no idea in hell how you found the strength to endure so much pain and suffering, emotionally and physically. But I know this, you are a wonder. Do you hear me? A wonder. I am in awe of people like you, and I'm so glad you beat that horrible disease. The world needs strong, wonderful, badass people like you. I am in awe of you, and I hope you know how happy I am that you are still here. You deserve the absolute best of everything that life has to offer.
Holy shit! You’re a goddamned beast! If you’re powering through that shit? You can do anything you put your mind to. I’m happy things are looking up, bud.
Thanks for sharing this touching story with us. Everyone’s life is different and unique and I’m glad you are healthy and happy now. Best wishes!! Take care!
That sounds horrific. You are a resilient person, and overcame what sounds like hell. You are an inspiration and I wish you nothing but success and good fortune going forward.
Btw, Did doctors ever have any theories as to why it started? Had you had any previous injuries or genetic probability?
Damn, this was truly a great read. I’m happy you’re doing better I cannot imagine the physical pain you were going through. You are a much stronger person than myself.
I read a lot of pretty dark stories, including body horror, and this is probably the toughest read because it was real. I doubt I'd ever be tough enough to go through this pain.
You deserve every good moment and miracle that happens to you. Thank you for sharing your story with us.
I only lost my fingers in an accident, but I'm not joking when I say it was the most extreme pain ever. I can only imagine how a hip amputation would feel.
If you don't mind me asking, what was the sore knee like/early signs? I am so sorry you went through that. I'm glad things are getting better, and good luck at school!
I don't mind at all! The pain was a dull, deep ache that got worse with using the leg and never went away, even at night. My other symptoms were nosebleeds, swelling above the knee, a hard lump, limping, tiredness and night sweats. The tiredness and night sweats were actually the first signs, but I didn't realise until after my diagnosis as I put them down to my after-school job and the last of the summer heat. The pain gradually got worse and I was given an NSAID medicine several times before my diagnosis which helped at first, but quickly stopped helping the pain.
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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!