10634
I am 22 and will die in 2 months - 2 years
Hi Reddit, this is my first post and I don’t know why am I writing this.
So long story short:
I was diagnosed with synovial sarcoma (not very frequent cancer-like disease) in my 19th, had surgery that removed huge tumor from soft tissues under my knee and subsequent 6 blocks of chemotherapy.
When I was 21 - tumor returned back in the same knee and I had to amputate my leg above the knee.
Now when I am 22 (almost 23) - tumor is back once more but this time in form of metastases (4 of them) spread around my body.
I am on chemo once again but doctors say that my disease cannot be cured and I have anywhere between a couple of months and a couple of years left to live.
I just started living my life the way I wanted (I was working as software developer for my relatives since 14 years old, wanted to secure early retirement and worked 70-80+ hours a week) and deciding what I like and don’t like, what experiences I want to have, taking my own decisions, etc.
My mood throughout my disease was (and still is) heavily optimistic even though I do regret many things and decisions in my life.
Sorry for bad English grammar, it’s not my native language.
AMA!
EDIT: Thank you all for your kind words in comments and in DMs! You are all very inspiring and reading all of that + replying to your comments is a very positive experience for me! I'll be replying to all your comments as soon as I see the notifications :)
EDIT 2: Wow there are so many comments, thanks to all of you, it means a lot to me! I might be logging off from time to time so you might not get your reply very soon, but trust me - I'll reply to all of you but it might take some time :)
Sudden-Effect-43112265 karma
Hi there, yes!
I really like to taste food of different cultures, so I am thinking about making a travel roadmap with my girlfriend for that reason.
Also as a software developer I’ve always dreamt about making a NSFW game with transparent documented development process. I am doing preparation works to start with that, and maybe it will be my “opus magnum”.
HautePursuit3028 karma
My wife was diagnosed with a rare type of soft tissue sarcoma. It had something like a 20% mortality rate at 2 years. Not great. Despite multiple surgeries and rounds of chemo we made it a point to do as many of her bucket list items as possible. We adopted a dog, got married, and had an incredible time eating our way across Portugal and Spain on our honeymoon. She died a few months after that at the age of 32. Sounds like you are making the most of being dealt a shitty hand. Enjoy every day like the gift it is. Best of luck, and don't hesitate to go eat all the food!
Sudden-Effect-43111093 karma
I am very sorry for your loss pal. May her soul rest in peace. Sounds like your last moments with her were very good! Thanks for your kind words!
Q-9000111 karma
If I was told I had 2 years left to live, I would be like "fuck work" and start trying to check off all those bucket list items, because it's most likely not going to be "I'm perfectly capable moving and traveling" later on as the condition worsens. I know my employers would have me replaced within 2 months.
But that's just me, sounds like you actually like your job though. Ultimately, you do you. (Sorry about the negativity).
The_Homestarmy83 karma
Not to take the focus off you or your answer here, but is your girlfriend holding up okay? I know how awful this stuff can be for loved ones
Sudden-Effect-4311170 karma
Well she is sad of course but she copes well. We do many positive things together, make many photos and videos, taste different foods together and travel and stuff :)
She is always happy and smiling with me, and I try to keep her busy with things so she doesn’t think too much about sad things.
NETSPLlT103 karma
Take time to be sad and unhappy together. She will be feeling, and while keeping busy is good there needs some times for the emotions to come and the thoughts to process.
Lost my closest best friend to cancer a few weeks ago. It's sad and it sucks. But there is no avoiding when the time comes it comes. Sharing honestly and openly is the best thing.
Keep enjoying the good times, and support your GF in her sorrow and grief, and you in yours. Because when the end is closer, you'll need that emotional connection. It's ok the be sad and it's healthy to process these feelings together, little by little. Get used to it dealing together before it's too much.
Sudden-Effect-431148 karma
I am sorry for your loss. May his soul rest in peace.
I wish you all the best and stay strong pal!
Thanks for your advice.
Sudden-Effect-4311205 karma
I want to make 2D action game about being a webcam model with some VN elements in it. I am currently making a gameplay prototype on Unity.
Accident_Pedo139 karma
Sounds awesome. I'm a QA engineer and would be happy to assist in any way I can with your unity project.
Also catlikecoding has some really sweet tutorials for even experienced developers such as yourself.
Best of luck with the development process too.
Sudden-Effect-431195 karma
Thanks for that! I’ll post something about my game once it’s in playable state and will be making a discord community for it after that :)
Hope to see you there once it’s done ! Thanks for the link too!
Gow8759 karma
I think everyone should try at least one taster menu (6+ small dishes) at an amazing restaurant (something with Michelin stars). The latter are usually influenced by cultures but I think the preparations often transcend individual countries and styles and take the best bits from each.
I have friends that hadn't tried it before and were worried it'd be too fancy for them and too stuck up. Mostly, these places aren't - they're just people passionate about pushing the boundaries and making something that looks and tastes great and serving it to people who appreciate it.
Go. Be fancy for a day. Be waited on for a few hours, savour the flavours and artistry and take someone you can talk to and enjoy your time with.
Sudden-Effect-431149 karma
Yes yes and yes! We’ve had a couple experiences close to Michelin star with my gf but a real Michelin star experience is yet to come for us. I thought about booking something in Japan when we come there :)
spekulol25 karma
check /r/finedining for inspiration! they can also help with a reservation
geoponos57 karma
Food and culture.
Well if you come to Greece, first night out it's on me.
I'm not kidding. Send me a message.
JeepMan83128 karma
If you make it to NYC, DM me with a link to this post and I'll take you out for a really good meal. Regardless, enjoy your travels
Sudden-Effect-431110 karma
Yes, very nice place, I've been there and will visit it once more!
Sudden-Effect-4311648 karma
Can’t see some comments in the thread for some reason but I do get notifications for them and can see the text (auto moderation?). Thanks for your support and warm messages guys, I see them all and really appreciate them !
Bulky_Invite3626467 karma
Are you afraid of death? What do you think about the fact that you have so little left to live
Sudden-Effect-43111507 karma
I am not afraid of death as a concept, I am very curious of what will happen when I die (I am almost 100% positive that the answer is nothing, and there will be no experience what so ever but who knows). It’s inevitable for all of us so yeah, memento mori.
I am afraid to suffer and feel pain when I die though.
damp_s133 karma
If it’s any help, palliative care is essentially how much morphine can we give someone without the drug being the cause of death.
I hated seeing my mum in the hospice dosed up but at least I knew she wasn’t in pain whilst she was like that
Sudden-Effect-4311114 karma
I am aware of that and I am going to meet my palliative care team members soon. I do understand that they will manage my pain but still am afraid of potential pain that still might be (especially in the moment of the death itself, I just can’t be 100% sure it will go smooth)…
MoonLitCrystal62 karma
I was terrified of the moment of death for my husband. He was on hospice and I had medicated him pretty heavily on a Sunday because he was anxious and agitated. (I followed the nurses instructions.) From Sunday until Tuesday he fell into a deep sleep, probably even a coma. Even though his eyes were half open he was not in any pain and he could not really respond to us. I know he could still hear because whenever anyone talked to him he would move his arms around. The nurse assured me there would be signs of discomfort if he experienced any, which he did not. At around 3 pm on Tuesday something told me to go in and check on him. I sat at the head of the bed and stroked his hair while talking softly reminding him of funny things we used to do when we first got together. I swear not even two minutes after I went in the room he took his last breath. It was so calm and peaceful that I didn’t realize that was “IT” until a minute or so later. He didn’t cry out, he didn’t move around at all, he just quit breathing. When I told the nurse about it she said it was one of the most peaceful deaths she’s ever seen or heard of. I am sad that you have to go so soon but I hope it is as peaceful and pain free as what I witnessed.
Sudden-Effect-431119 karma
I am really sorry for your loss. May his soul rest in peace.
Thank you for sharing your experience and for your warm words!
InformationHorder21 karma
Are you considering medically assisted suicide once you know you're definitely at the end? would that alleviate the fear of the dying process?
Sudden-Effect-431179 karma
I dont think I'd want or be able to agree to do that. I'd still be afraid of the process...
jimmycarr156 karma
I appreciate your honesty in this AMA these things are tough to talk about. All the best to you fellow software developer.
AnRealDinosaur38 karma
For whatever it's worth, I had a friend who went that route. Of course I can't relate his personal experience, but he was aware & communicative right up to the last moment & to an outside observer, it seemed very much like just falling asleep. I don't have any reason to fear that the actual moment of dying should be a painful experience. All the best to you in your journey. I hope you get to eat all the delicious foreign food your heart desires!
LucinaRage20 karma
I just wanted to drop in and offer a recommendation. Check out some lectures by Alan Watts, his philosophy about life and death is uniquely comforting. In short, he essentially presents the idea that, should you subscribe to the Big Bang theory, it would imply that since we are all made of what was once “everything” before it went boom, that we’re all basically just the universe experiencing itself.
I may not agree with everything he presented, but a lot of it sets the stage for some really interesting ideas. If nothing else, he’s got a soothing way of speaking, haha.
Sudden-Effect-43117 karma
I'll check him out, thanks!
>we’re all basically just the universe experiencing itself
I've thought about this also, maybe his ideas are going to be relevant to me :)
SometimesGameDev12 karma
I am afraid to suffer and feel pain when I die though.
Sorry if what i'm about to say and ask is too morbid.
The suffering and death in the last few days/moments is my worst nightmare as well. Cancer runs in the family and i've witnessed those last moments a few times now. The sheer horror and pain is beyond belief. High dosage morphine hardly put a dent in it. I swore to myself that if i get a deadly illness and death approaches, i'm gonna bow out early in the last few days with a quick and painless method. Have you thought about doing something like that as well?
Again, sorry if that was too morbid. Hope you got a lot of time left and you're living it to the fullest! I also hope that when the inevitable happens, it happens peacefully in your sleep.
Sudden-Effect-431116 karma
I am sorry for you having to experience that and sorry for your losses.
It is perfectly normal question!
I do want to die naturally even though it means me being high on morphine.
reddit-snorter288 karma
What drove you to start software development at 14?
It’s amazing to see how optimistic and driven you have been through everything. More power to you and wish you the very best for the rest of the journey!
Sudden-Effect-4311286 karma
Thanks for the warm words :)
When I was 9-10 I’ve got my first computer from my parents. I’ve played many video games, browsed many websites and was wondering how it’s all made. When I was 11 I’ve started researching that on my own and it started my journey with web development (PHP) that continued till now.
I’ve worked with many languages like Java, C++, C# and many more but my language of choice is TypeScript and my biggest expertise is backend Node.js.
Currently I am a full stack web3 (crypto/blockchain) developer!
GadisRKO70 karma
That’s amazing. I really wish I had that kind of drive and determination for CS, it’s really interesting stuff but I just don’t get it lol. Wishing you all the best in your final months/years! Cheers mate and live it up while you still can.
Sudden-Effect-431153 karma
Thanks for your kind words pal!
Never too late to dive into CS once more if that’s your thing ;)
Sneax9418 karma
I really like your optimistic attitute in this very difficult situation. I Wish you the best and keep this good thoughts Up :) To you have good source suggestions for learning web development ? Thanks ;)
Sudden-Effect-431127 karma
To be honest hard to give any advice as I've seen many people who started doing web development and everybody went their own way. It is very personal...
Generally people seem to start with youtube/coursera/etc and gradually progress from that. After some trial and error you'll start grasping the concept and eventually start reading documentation of frameworks you like (like React, Node.js, and etc.) and learn from there!
Personally lately I've been going straight to documentation whenever I've learned something new!
Oztravels163 karma
Are you investigating any alternate treatments? Also in no way I’m I downplaying what you are going through but thought I would offer some light. My wife was given 6 months to live because of a metastasised melanoma in her lymph glands. That was 28 years ago. She then had a brain tumour (again melanoma) which was operated on 25 years ago and she was then given 3 months to live, if she survived the operation, which they said was very unlikely. She’s sitting here snuggling with me as we speak.
Sudden-Effect-4311154 karma
Very happy to hear that about your wife! May her health be as strong as it is and even stronger in the future!!
I will look for more options once my current chemo treatment is done (I did 3/6 blocks for the moment) but I was told by doctor that as synovial sarcoma is considered rare - there aren’t much options other then different other types of chemo. I am not done fighting yet though ;)
crisse-tabarnak139 karma
dont waste your time and money on scams and "alternative" pseudoscientific bs... if it worked it would be picked by modern medicine and proven with scientific methods, peer reviewed, etc
Sudden-Effect-4311107 karma
I am 100% science believer, so you can be rest assured I won’t try it unless my doctor tells me so ;)
Eidolones45 karma
I would suggest consider talking to your doctor about participating in clinical studies as well. Since synovial sarcoma is such a rare disease there aren't many approved treatments, but you can still find some newer drugs being tried in the clinic (https://clinicaltrials.gov/search?cond=synovial%20sarcoma).
Sudden-Effect-431111 karma
Hey there!
I've got a couple of links on relevant trials that I am going to present to my doctor and discuss them with him on the next Thursday!
Soundwave-Pilot153 karma
Have you ever tried or plan to try psychedelic substances.
Most people don't think about death even though it's inevitable. What are you doing to meet with it on your terms? (I sincerely hope by some miracle you don't have to any time soon though)
Sudden-Effect-4311207 karma
I did try LSD when I was 16 but that wasn’t a positive experience :D
I want to try MDMA/shrooms with my gf after one Redditor suggested this activity :)
I don’t know if I’ll meet the death on my own terms.. I know that it’s coming and my doctor says I’ll know if it’ll happen real soon or not (my scans / results will show that). What I do know is that my bucket list items are being done by me and I hope I won’t regret not doing something when death is close by!
jimmycarr156 karma
Shrooms will be similar to LSD. Shorter duration, feels a bit more natural but also more sci-fi. It's important to do it in a safe environment with people you trust, maybe that isn't how your LSD experience went or maybe it was negative for another reason.
MDMA is a bit easier, you will probably have a good time no matter what, just take a sensible dose and be mindful about hydration (not too much or little).
Deadlock240129 karma
What is keeping you from acquiring a high-limit credit card and making rounds across the world trying new food?
Sudden-Effect-4311105 karma
Nothing!
I do have some savings that I use for travels and experiences!
lvhockeytrish110 karma
If you ever make it out to Vegas, hit me up, I'll do everything in my power to make your trip amazing.
Sudden-Effect-431153 karma
Never thought about Vegas but actually now I think it would be amazing to visit it too! Thanks :)
Kuliroo110 karma
Hi mate, so horribly sorry to read your story. I had the same shit when I was 15 in my right ankle soft tissue. 2 surgeries, year of chemo and month of radiotherapy later I was declared free of it, and for couple of years I had MRIs and CTs to make sure it does not reappear. It's been 15 years since the first diagnosis.
Right now I am considered ok, recent MRI have shown that the original area is clear. My question is, how did you realised that it had reappeared in your body? It's a constant fear of mine.
My whole life I have to deal with depression, anxiety and total numbness to everyday life, like I'm living on borrowed time and nothing is worth of being build and maintained, due to risk of not living long enough to enjoy it.
I really appreciate your positiveness, you are brave and to be honest I think you should just enjoy it. Hug loved ones, trees, while being outside stop for a second and watch birds hang on the branches... There's not much to life if you stress about it, and enjoying it depends solely on your peace of mind.
With the right attitude (which you certainly have) you might live fuller life in forthcoming months, than some people in 50 years of theirs.
Enjoy the rest of your life!
Sudden-Effect-431170 karma
Hi there pal!
My planned CT scan shown it. I wasn't afraid of it showing up as I've expected it.
I do hope that you stay clear and stop worrying about it. Start living your life and just enjoy it mate!
Kuliroo15 karma
How did you expect it, was it like a feeling or did you have some symptoms? Like fatigue or I don't know, pain?
Thanks, I'm trying my best, but it's not much.
Sudden-Effect-431127 karma
No I just read many articles on the disease in general, how the disease usually progresses and etc.
Pure probabilities / statistics stuff!
sterlingarcher0069104 karma
What are your regrets?
Do you still keep in touch with your mom?
Sudden-Effect-4311343 karma
My biggest regret is that I’ve been non stop working (I am talking 70-80+ hours a week) in order to secure early retirement. This left me out of any social activities typical teen / early adult would have.
I’ve started focusing on myself very recently (3-4 months ago when I found out my sarcoma is in metastatic phase) and now I understand that proper work-life balance would’ve been much much better.
But that’s my past that I can’t change. Now I mostly focus on the present time, positive experience and good memories !
Sudden-Effect-431168 karma
Yes that’s definitely good but would’ve been better if I thought about myself a bit more :)
Snorf41 karma
I understand, but i think you should be proud of your efforts not regret them.
Please forgive me for suggesting how you should feel about anything.
Sudden-Effect-4311164 karma
Also yes, I do keep in touch with my mom but she doesn’t yet know that my lifespan is limited. I currently live in UK and just helped her make a visa in order to visit me here (she lives in occupied part of Ukraine so it was quite hard to organise).
I am going to tell her when she’s here because I know she’ll be devastated once she knows.
HotterThanAnOtter62 karma
I just want to say your positivity is inspirational. Glad you were able to get your Mum over and want to wish you all the best when talking to her, you seem to have the strength to pull you both through it and that is a huge credit to you.
spacejester101 karma
What lead up to the diagnosis? You mentioned your knee, did it start as innocent leg pain or something like that?
All the best mate, I hope you're able to expunge some of your regrets while you have the chance.
Sudden-Effect-4311151 karma
Hey there! First I had pain when walking more then couple kilometres (I thought I stretched some muscle first), then I couldn’t sleep without a pillow under my knee and finally when I found a lump under the knee - I went to doctor and he referred me to cancer specialist.
Sudden-Effect-431130 karma
Lambert, Lambert - What a prick...
(in my native language this song is much better though :D)
Fettklomp14 karma
Please tell me you intend to give XVI a shot. Ive been playing it nonstop for a week and the sheer amount of graphical cinematic moments is jaw dropping. It truly feels like a next gen game
alfis2633 karma
my man :)
If your bucket list ever takes you to central Mexico shoot me a DM and we'll take you to some amazing tacos
Sudden-Effect-431112 karma
Hey pal, thanks a lot for the offer! I'll try to get there, Mexico is an amazing place and its dishes are my most favorite!
Sudden-Effect-4311148 karma
Definitely Japan! I have a friend there whom I’d also like to visit :)
One of my bucket list items is visiting a hot spring with view of Fuji!
SophiaTPetrillo36 karma
I hope someone of means can help you accomplish this exceedingly reasonable goal. Fate is a funny thing and none of us knows when we'll suddenly be at its unfeeling mercy, and I really admire your positivity and optimism in the face of such a complicated and dire situation. It really is inspiring. If I had any money at all, I'd gladly buy you a ticket to Japan this very second, but alas, I am a broke-ass. However things work out, I wish you the absolute best.
Sudden-Effect-431133 karma
It’s okay, I have some savings towards that goal! Thanks for your kind words :)
2rio232 karma
If you need any super specific travel advice for Japan let me know, I used to live there and visit back often.
For an onsen with a view of Fuji there are lots of great options, but my favorite was kozantei ubuya on this list below.
See: https://jw-webmagazine.com/soak-up-with-mt-fuji-5-hot-springs-lake-kawaguchi-7e0506ae9870/
Sudden-Effect-431112 karma
Oh wow thats just magical!! Thank you!
It's exactly how I've imagined it and I will definitely visit this place!
anodizer42 karma
As a fellow cancer patient in a pretty much similar situation, how important do you think your optimism is? Does it feel genuine?
Wish you all the best!
Sudden-Effect-431140 karma
Hey there!
Sorry for you having to experience the same and first of all wish you good health and all the best!
My optimism is pure and genuine and I do feel like it helps my parents and gf cope better with my situation.
anodizer16 karma
Yeah makes sense, my gf is often getting angry at me for being pessimistic. I draw inspiration from people like you though and thanks for making this iama!
Sudden-Effect-431112 karma
We all cope with this differently but I do hope you find happiness and joy even while fighting the disease!
Thanks for being a part of my post :)
Sudden-Effect-431138 karma
Hey there!
I almost don’t read fictional books but have read some technical ones (although I didn’t liked them much)
I really like reading technical documentations (guess that’s my quirk) though !
Wiggles11430 karma
Have any of the oncologists treating you suggest a clinical trial testing engineered cell therapies? this one https://classic.clinicaltrials.gov/ct2/show/NCT04044768
uses a cell therapy that essentially "teaches" your immune system to find and destroy the synovial sarcoma tumors.
Sudden-Effect-431125 karma
Hey there!
No haven't heard about it. I'll research this and ask my doctor though, thanks for the suggestion!
quantumflux2214 karma
Along these lines, I was going to ask if your doctor has had your tumor(s) sequenced? In BC, Canada, there is something called the Personalized Oncogenomics Program that looks at a tumor's DNA sequence to try to come up with treatment options that can impact genomic alterations in the tumor.
https://www.bcgsc.ca/personalized-oncogenomics-program
I didn't catch where you were from, but it may be possible for your doctor to reach out to the program to see if you could be entered into the program.
Sudden-Effect-43119 karma
Hey there! I am currently living in the UK. I will ask my doctor about this on Thursday, thanks for the suggestion!
scarab45630 karma
Hey I know this a pretty selfish, but can you or someone follow up when things get close to the end?
I don't mean to be insensitive, i just want a little more closure. I find it sad to read stories like yours that just abruptly stop. Not that stuff doesn't keep happening, it will regardless whether you decide to do something like thia again or not. I would like to know more about what goes on between now and the end.
Sudden-Effect-431142 karma
I’ll never thought about that, maybe I’ll ask my gf to do a post mortem!
I don’t know if she’d be able to handle that though
scarab45634 karma
Doesn't have to be a post mortem. I shouldn't have emphasized that. I don't want to burden you or others around you.
A milestone, i want a follow up when you hit one of those. I've read through your other answers and I want a follow up for the traveling you'll be doing, food you get to try, or even that game you're working on.
Sudden-Effect-431122 karma
Oh sorry I didn’t understand you well in previous message :)
Can’t promise but will think of milestone posts!
Sudden-Effect-431164 karma
I am originally from eastern region of Ukraine so my native language is russian but I am fluent in ukrainian also :)
Sudden-Effect-4311121 karma
Just sad that something like that can happen in XXI century.
I was forced to leave my hometown when the war first started in 2014 (it wasn't called "war" back then but it is still war) in Donbass and Luhans'k.
Now I had to leave my second home (Kyiv) once more in 2022 (my leg is amputated and it was very hard to constantly move between my apartment on 16th floor and bombshelter in the basement).
ghostsoul42025 karma
I don't exactly have any wise advice to give other than live the time you have left to the fullest and spend time with your gf, friend and family. (Adding a ? Here or reddit won't let me post)
I can recommend a movie that might help you see your situation in a different perspective - Me and Earl and the Dying Girl.
Sudden-Effect-431124 karma
Thanks for your comment !
I can’t promise I’ll watch that movie as from the description it seems to be a bit sad (I live with my gf and we watch stuff together, I try not to make her think too much about you know death and stuff, hope you understand) but thank you for recommendation !
ghostsoul42012 karma
It's not completely sad, wouldn't have mentioned it otherwise :P. It's mostly a comedic movie with the death part being obviously sad but it also ends on a positive hopeful note. That's actually why I recommended it, for the hopeful ending to make your own situation feel slightly better.
I totally get if you don't wanna watch anything that reminds you of your situation though, no worries. Wish you the best for what time you have left.
Sudden-Effect-43116 karma
I’ll reconsider it now then, thanks for the advice and your kind words !
McPansen20 karma
Hey friend, perhaps you can help me with some advice. My best friend since childhood (we're about twice your age) has recently been diagnosed with cancer and the way I understand it, his outlook is roughly the same as yours. I haven't met up with him in person since learning the news, but will very soon, so I was wondering: How do you like the people close to you to behave around you? Should I just be my usual self? Should I address the diagnosis and its implications or should I avoid it? Should I avoid talking about things happening in my life or about "the future" in general? I'm up for anything, I just want him to be as comfortable as possible.
Thanks in advance! Glad you're holding up well so far, I wish you all the best.
Sudden-Effect-431122 karma
Hey there! Sorry to hear that about your friend. I wish him best of luck and strongest health possible.
Some people around me behave unnatural when they get to know about the disease I have. I mean that they tend to treat me as if I was too fragile and stuff like that... I understand them and its ok but does make me feel a bit uncomfortable.
For me normal and natural behaviour would be with some degree of curiosity (ask me questions, because if you had the same disease - I definetely would have some :D)!
Other then that, I am a normal human being and there is no need to be too "careful" with me!
McPansen8 karma
Got it, I'll be just normal and not beat around the bush then. It's what I was thinking as well. The people your care for suddenly acting all different and weird can never be a good thing.
Thanks a lot, stay strong!
No-Needleworker-183117 karma
Hey man. Very inspirational stuff. I am a 21yo male which had a surgery very recently that may leave me with erectile dysfunction/complete impotence. Before this, in the past few years I have been making steps to improve my life. Life was going up for me. However, with ED it has completely changed the course of my life. As a single young male, it has left me devastated and lose all motivation for anything. I never thought I can be a depressed person. But ED really changed me, even the way I look at myself in the mirror is different.
Hearing your story and your outlook in life makes my issue seem minuscule. Love your optimistic outlook in life, your grit, your will to live, making the best use of life. Also, I admire the love you and your girlfriend have. It is really something special. Hopefully, me too can pull through this and live life.
With that I leave you with a short anecdote:
Kid:”Mom, why does god take the best people from us?”
Mom:”Well, when you’re in a garden which flowers do you pick first?”
Mom:”The most beautiful ones”
Go on and enjoy the rest of your life mate. Wishing you all the best. Nothing but love and best memories.
Sudden-Effect-431113 karma
Hey there!
First of all I am wishing you strongest health possible and best of luck. I am sorry to hear about your problem and I really do hope you find strength and get support to move through it!
Don't compare your problem with someone else, the importance of your problem just can not be compared with someone else, it is all very personal and what matters is what your problem means to you.
I am sure you'll be able to pull through and everything will be good in your life and life of your significant people!
Thanks for the anecdote and your kind words!
throway_nonjw17 karma
Have you or your doctors found out if there tests for experimental drugs for treating sarcoma out there? It can't hurt to ask.
I hope you hang in there. Read some Discworld. Listen to some good music from the 70s and 80s. Catch some movies you may have missed. Make the most of what time you have!
Hang in there!
Sudden-Effect-43119 karma
Thanks for you kind words!
I am going to ask my doctor about experimental treatments after my chemo is done :)
acrizz17 karma
You seem very wise for your age. Has your thinking fundamentally changed since getting the news? I imagine your entire thought process each day must vary greatly.
Sudden-Effect-431128 karma
To be honest my thinking always was like this :) I researched my disease and my chances when I was first diagnosed at 19. I am pretty realistic so I knew that my current outcome is probable and might happen, but tbh I thought I had a bit more time.
jrr2ok16 karma
First, I want to thank you for the graciousness you're showing by doing this AMA. I hope everyone comes away inspired by your outlook to remember that every second counts. May your bucket list be completely checked.
My question is about your status as an amputee. If you were in a position of power to make life easier for people with mobility challenges, what sort of changes would you implement? Are there things that you feel people don't notice or take for granted that present significant challenges for you and others?
Sudden-Effect-43119 karma
Hey there! Thanks for your kind words!
Well, this may sound basic but I'd make all spaces accessible by default (ramps with small angle of slope, lifts where needed and etc.) for people in wheelchair, I'd also consider blind people and people with hearing problems. Even though I currently live in UK and its much more accessible then Ukraine - you'd be amazed how many places are still not accessible to me.
I always take crutches with me when we are walking somewhere with my gf as there are plenty of situations where I need to get up/down the stairs and etc.
Matchbreakers15 karma
My dad got diagnosed with a particularly nasty type of acute leukemia, at one point his survival chances were in the 10-20% range, but somehow we got lucky enough that he’s now completely cancer free. Never give up hope! (I know that can sound hollow af, but I mean it).
As an actual question, is there anything you really want to do, but it’s difficult to set up?
Sudden-Effect-43119 karma
Hey there, I am happy your dad made it, congratulations! I wish him best of health and best of luck!
And thanks for your kind words, my battle isn't over yet >:)
Well maybe the most difficult thing from my bucket list is travel to the Japan (not from money side, I have some money for that but in general) and development of NSFW game that I want to make :D
But I think I'll be able to execute both of those things!
Sudden-Effect-431128 karma
I am feeling okay, I’ve knew my chances since I was 19 and was aware that this might happen. I thought it would happen not this soon though.
Generally I am very optimistic with my mood and very realistic with my prognosis :)
Sudden-Effect-431119 karma
Hey there, just replied to similar questions to yours :) For me it’s Japan, I really want to see Mount Fuji from the hot spring!
Lydiafae6 karma
Oh that's wonderful! If you make it out there, stay in a traditional hotel for at least one night. Japan is on my list too.
Sudden-Effect-431117 karma
She is very brave and copes well!
I help her not to focus too much on the bad things :)
InheritMyShoos10 karma
Please don't worry about a reply to me - live your very best life!!
Just wanted to say that you're amazing, I'll think of you from time to time and hope you're living it up! I personally have the "good" type of leukemia, called CML. I was recently diagnosed and began treatment on a TKI. It's extremely mild.
Since I must ask a question per sub rules - how are feeling now that you have stopped treatments? Do you have any symptoms from your cancer itself? (Please don't feel obligated to answer!)
I truly hope you fulfil all your dreams, OP. ♡
Sudden-Effect-43117 karma
Hey there!
First of all I wish you best of luck and strongest health possible!
And thank you for sharing your experience and your kind words!
I haven't stopped my treatments yet! In fact I am doing a chemo right now (3rd block out of 6) and still exploring some more options. My fight is not over yet ;)
Yes I do have severe pains in my back and in my chest. They are called cancer pains and the main reason for mine is fluid buildup in my lungs. I am constantly taking morphine (in pills) but it doesn't help too much as I still feel them while writing this message.
But it's okay, I've learned to live with them !
Much love pal!
eisiux8e8ehd5 karma
By saying you're heavily optimistic, would this mean you're more curious to find out what happens after you die than afraid?
What would you say your current prediction/belief is of what happens after we die? Would you say it's the afterlife, or perhaps you being reborn into a new life?
Best of luck bro, hopefully a miracle happens
Sudden-Effect-431120 karma
Definitely more curious than afraid, yes!
I really hope we get reborn but I think that there is just nothing else after the death. Absence of existence. It would really be cool to die and realise that in fact all of your life was basically a simulation and in reality you are advanced alien being that just went to alien arcade store to play a game of life lol :D
Thanks for your kind words!
sicknutz4 karma
Do you believe in continuation of consciousness after death / have you read After by Dr Bruce Greyson?
Sudden-Effect-43114 karma
Hey there, no, I didn't read this book. I hope there is continuation of consciousness but don't believe in this to be honest. I think most probably there is just abscense of existince after the death :)
Sudden-Effect-43117 karma
My girlfriend makes me very happy and experiences we get to share are what I live for!
Only thing that makes me sad at the moment is war in Ukraine as I cant visit my motherland and see my best friend who lives there.
Salzberger4 karma
What is the most mundane or not sentimental thing you are bummed you'll miss?
So, not something like "I wish I could have kids and see them grow up" or "I'll miss my friends", but maybe like a movie or TV series you think you might not see the end of.
MarcusXL1556 karma
Do you have any plans for things you'd like to do, see, or experience before the end?
View HistoryShare Link