NOTE: THIS POST IS LONG, VERY LONG. BUT I FELT THAT DUE TO THE EXTREME SERIOUSNESS OF YOUR SITUATION THAT IT REQUIRED SERIOUS AND THEREFORE I HAD NO CHOICE BUT TO MAKE IT LONG IN ORDER TO CONVEY THE BEST THOUGHTS AND IDEAS I CAN TO YOU. READ IT IF YOU CHOOSE TO OR DONT, THE POINT IS ITS HERE FOR YOU AND I AM TO THE EXTENT THAT A STRANGER ON THE INTERNET CAN BE. HERE GOES:
To start, just to give you an idea here of how serious I took this post and how i felt COMPELLED to respond: I have not logged into bluelight in several years at this point because i think the moderators ae a bunch of circle jerkers and that the overall control of the website is done by a committe of said circle jerkers with no true leader.
HAVING SAID THAT, i felt I HAD to log in to respond to you here. Compelled even, because yours is such a serious situation that isn't just about some guy shooting up the wrong way and getting an abcess just to have 10 mods close the thread saying go to the doctor (which is obvious information anyone but people are stupid about that stuff)l
People ARE THERE FOR YOU. I will include myself in that if you ever need to talk. I cannot sympathize with what youa re going through as I have never expierenced it, only empathize both from a perspective of "what if that was me" and based on my fathers stage 2 liver cancer (he got a transplant 15 years ago this august so its sitll in remission).
But having said all that, I really hope that mentally you have a good support system you can lean on. I can understand using, it might even be somewhat justifiable (when it should never be jusitifed but this might be the exception that proves the rule) and if it helped you out mentally or physically no arguments there.
Just do what you ahve to do man. Listen to the doctors but also realize in the end its ultimately your decision. Obviously you need the radiation if the chemo did nothing to halt the tumor, and it seems all the chemo did was maybe slow it down a bit and ravage your body. Chemo are very backwards ass chemicals that are only used because they are effective at killing new cells, but that also includes your stomach, hair, etc any body part that grows cells quickly (pancreas too, etc the list goes on). But as im sure you know and as i basically stated: chemo literally is poison. Youre basically taking a poison in the hopes that the poison will kill the bad stuff before it fucks you up too bad.
It seems to me that you are unfortunate in this regard in that the chemo did not help you at all but instead could have possibly even helped the tumor by weakening your own body's ability to fight it. Combine this with the fact that it is a (relatively speaking) large tumor on your BRAIN which is one of the spots, along with liver lung and pancreas, that is able to spread throughout your body quicker than other cancers (because regarding those, those are organs that ALL OF YOUR BLOOD at one point or another passes through thus making it easier for the chemo to spread).
Sorry if writing all that disturbed you, but if you've stuck with me I'm trying to put it in perspective for you: what do you really what at this point? Again you should listen to doctors, you should get second opinions too of course, but what do YOU WANT out of all this? Will this radiation save you? Its it only going to delay the inevitable and make you feel sick and awful again and then in the end have the same result? Again, empathizing with you fully, and you should be seriously thinking about all of this. It is FOOLISH BEYOND WORDS of me to NOT ASSUME you are doing just that: that you already are weighing all options fully and making an informed choice. But again, the choice is yours, and yours alone. The doctors dont make it for you, they make suggestions which they feel are the best option at the time to either save your life or extend it by a (hopefully long) period of time.
And this question may sound a tad cold, please dont take it that way, but: have you been told how much more time you have whether you receive the radiation or not? If they've said somethign like "If you do this you could live for another 2+ years" it might be worth it. If they tell you "it'll only give you another 6 months maybe" then your choices are going to be vastly different in each scenario.
Again it is not my desire to upset or scare you or in any way shape or form come across as a cold heartless asshole. I empathize with you so much: again i cant sympathize cause i haven't experienced it, but i can have empathy for you because I understand your feelings and situation, even if i personally have not had it happen to me.
But if it were me? I'd be asking my docs these questions: how much time will this give me? Lots, little? The chemo was the first choice doctor, but it seems to have had no effect except to probably make it worse as it weakened important bodily functions while having no effect on the tumor: is the tumor too aggressive to really and truly treat? Will this radiation also cause me to become sick (and it will im just not sure how it does so in comparison to the specific chemo you were on since there are many forms of chemo for many different cancers) and my quality of life remain as poor as it was with the chemo, and have no end result thats beneficial? Or will this treatment give me TONS OF TIME at the cost of my health for that period of time.
Now OBVIOUSLY the goal with the chemo was that last sentence: sacrificing your body at the time in the hopes that you will get more time from the tumor either shrinking or not growing. But in your situation this did not happen, so I would be getting quite a few opinions and really would want to know the reality of the situation: is the radiation going to only give me 3 more months where I once again feel like shit, have no energy, and cant do the things I want to do before I pass (and i am trying to put this gently, theres no real easy way to say or ask or answer that question i feel), or will it give you a legitimate fighting chance of lets say......ltes say it would be 3 months without it and 15 months if you take the treatment. That would be worth it to me, but if youre going to be in a miserable state that entire time, maybe its not.
Maybe youd rather spend the money on going places and doing things you never got to do because this sounds pretty serious from how you described it; and im assuming it is pretty fucking serious considering its a relatively large tumor in an fairly important part of your brain.
I guess it boils down to how much more time this treatment COULD give you, how realistic it is that it will give you that much more time, and ultimately whether that much more time is worth you going through the radiation treatment; these are things no one here can answer for you, and perhaps questions you might not even know the answer to yourself if you haven't asked the doctor these specific things. BUt i would, and get a second and third opinion too.
Again I am trying to be nice here when I say this, I really do not want to come off as a prick: but if the radiation is gonna give you only 3 more months, meaning lets say 6 months total if 3 months is what will happen if you dont treat it, is that last 3 months really worth being that sick and miserable during? Or would you rather spend that energy, moeny, and MOST IMPORTANTLY TIME (time is an individuals most important resource, more than wealth, power, skills anything, because time is the ONLY RESOURCE YOU CAN NEVER GET BACK) and in this instance if your time is limited......I myself would want to devote that limited time that I would never get back doing things I always wanted to do but never got a chance to, instead of blowing tons and tons and tons of money, time, procedures, and feeling like shit jsut for an extra few months.
AGAIN I HAVE NEVER BEEN IN THAT SITUATION. It is impossible for me to truly grasp how you feel because again, I haven't been through this. I haven't had to consider my....passing as a result of illness that I attempted to treat but the treatment in reality made worse (and thats what happened despite what the docs say, it maybe have slowed the growth but i guarantee you the ravaging it did to your body that you yourself mentioned: low white/red cell count, feeling sick as shit all the time, no energy, unable to work or do things) is going through something like that again worth it to you?
I guess this all depends on how much extra time they estimate that this will give you, and ultimate that is probably the deciding factor. Giving you an extra year is a lot different than an extra 3 months spent going to radiation every week or however often.
So I guess the ultimate response here is its really IMPOSSIBLE FOR ANYONE HERE OR ANYONE ELSE ANYWHERE TO ANSWER THIS FOR YOU. You ultimately have to make this choice yourself. I will say it is doubtless the most difficult decision you will probably ever make in your entire life, for obvious reasons, but it is yours. And ultimiately YOU have to choose, and weigh the scales and see whether or not that suffering is worth that extra time, which again as someone who does not know exactly what timeframe this next treatment will give you, we are all in an even worse position to answer this question.
But thats ultimately it bro: is that extra time going to be worth you going through that suffering? Or do you feel your time could be put to better use? Only you can decide that bro, the best anyone here can do is maybe provide some sort of clarity, even if its barely minimal, which I hope this post does. Again I quit bluelight years ago, you can check my last post date, but I checked the main page today for the first time in several years, saw your post was at the top and felt I HAD TO RESPOND and give my input because of the type of situation you are in.
My heart goes out to you man it really does. As i said you made me post on a website i swore to never post on again because of the "bluelight politics" (again just a bunch of mods circle jerking on a cookie that one of them gets to eat) but really man, my heart and thoughts are with you, both in your fight as well as your decision. Deciding against a treatment that will make you miserable and only extend the timeframe long enough so that you can STAY MISERABLE is not worth it in my book. If that end time is going to be spent once again being sick, unable to do basic things, and ultimately only provide enough time for you to experience that suffering and nothing else, I myself would not do it.I would do the exact opposite and go see the world so to speak. But if that treatment is gonna give you af ew more years, well then its p[probably worth it.
But again you need to have some SERIOUS CONVERSATIONS with MULTIPLE DOCTORS about what this treatment will do to you, how long you have to do iut for, how long it will GIVE YOU, and whether or not all of that is worth you going through that pain and suffering of radiation treatment (and as its directed towards your brain, despite their best measures to preotect the rest it ultimate is.....very aggressive. and they are obviously choosijng a very aggressive method because it appears that your tumor is VERY AGGRESSIVE considering as you said it GREW during your chemo treatment. All it did was make you sick for however long and ultimately do really nothign, perhaps even harmed you as i said because it killed off other important cells and parts of your body: eg your white blood cell count, since the chemo didn't help you might have been better off with your body fighting it on its own, instead of a doctor destroying yoru bodys main defense system, and this all implies to me a very aggressive case,
But again man, I have all the empathy in the world for you, and i really do not want to come off sounding like a cold asshole. Im just trying to be realistic here and convey to that 1) its your choice ultimately regardless of doctor opinions (although you shouldn't throw them in the trash, oncologists dedicate their lives to studying cancer so their opinion is not to be invalidated). but i feel you need to have THE MOST SERIOUS DISCUSSIONS OF YOUR LIFE with several doctors, and just ultimatrely decide: is X amount of time worth my suffering for X-Y amount of time, where the two could possibly even be the same and as i stated then youre just....lat tha tpoint in my opinion if lets say the radiation give syou 3 more months, and the treatment itself takes 3 months, youre basically just making yourself suffer for that same amount of time where you can do things you want to do and function fully. Because say for example that would give you 6 months, half of which is taken up by the radiation lets say, leaving you realistically with 3 months to do the things YOU WANT TO DO before.......well before. And effectively that choice would mean 3 months of suffering for an extra 3 months to do things, COMPARED TO 3 months to do those things without 3 months of suffering before hand
But again a lot of your answer should hinge on the best and worst case scenarios of this treatment, and ultimately: if the extra time given you is even worth the suffering of the treatment. Because if the only thing the treatment does is keep you going just to get more of the treatment done, and then youre still in the the same position as beforehand, why put yourself through it? (thats just my opinion there though: once again I cannot state enough to you how i can only empathize because your situation is so serious that to even pretend that I know what your going through I would consider insulting because I really cannot.
Andd I doubt anyone on this website could tell you anything more or better than whtas right here. Because the answer should all be the same: its your choice and you should make it based on how much time this treatment will give you RELATIVE TO HOW MUCH TIME YOU HAVE PERIOD. beacuse if you only have X time, and the treatment only extends X by a few months, and you had to spend those months just going through the treatment for the SAME AMOUNT OF TIME (because realistically speaking as you yourself said when going through these treatments it takes its toll on your bodfy in a HUGE way: physically (lost weight, ruins tons of fast growing cells in your body), mentally (you have the entire mental aspect of chemotherapy which I've only seen through my father) and finally 3) is the suffering this treatment giving you worth that extra time? And that ultimately depends on exactly how much "extra time" you can get. As I stated, if the treatment takes lets say 2 months or whatever, and that gives you an extra 2 months, its effecitvely the same except without putting yourself through that ringer. But if its worth it to you even if you ahve to sufer doing it just to have mre time with loved ones even if that time is not the same as when youre at your peak.......
Again this is the best I or anyone else can kinda tell you. We cannot make the decision , this is your life and its a serious fucking deal and no one here should be fucking around when they give you advice. You shouldn't even read any medical advice someone posts here because its irrelevant: it all boils down to what been said: is that treatment WORTH what you will get out of it, or will it just end up being the same amount of time where you FEEL active, energized, and heatlhy as you would have without the treatment. Thats just my 2 cents and how I would potentially make the decision.
And again your post and seeing it made me actually sign into bluelight for the first time in years and make my first post in years, such is your the grandiosity of your problem and its magnitude and i felt the need to give my insight. But again......thats just my perspective sitting hereon the other end of the screen, because....
ULTIMATELY?: YOU AND ONLY YOU CAN: the doctors cant, people on bluelight cant, relatives/family cant, iits on you and if I had to wager on a guess here i'd say it might in fact be the most important choice that you've ever made in life. So all I can do is say my heart is with you, Im here if you need to vent or anything, and just.....do what you feel is right. Do what YOU THINK IS BEST FOR YOU: not whats best for other people around you, but whats best for YOU YOURSELF. You earn the right to be a bit greedy when your time because limited because, as stated time is your most important and valuable resource .
I wish the best of luck to you and would very much like to know what choice you made and for what reasons, and how much more time this may give you. BUt again though, just for arguments sake: if someone gave me 6 months, and then said I could POTENTIALLY (again not even guaranteed, inf act it could even be LESS than 6 months) if i went through a highly invasive treatment that made me unable to do things I wanted to do before I ........moved on, I wouldn't think its worth it. You'd effectively be getting the same amount of time that you can SPEND HOW YOU WANT TO, at the cost of the suffering you might have to endure.
Again first time back on bluelight, and I plan to stick around just to read your posts and see what you've decided or happens
Sorry this post is a bit long, I just wanted to fully convey my opinion, my reasoning for it, and most importantly my empathy: i feel for you dude, even a lot.. A real lot, even though I cannot fully relate because its not happening to me. All I can do is wish you the best of luck, hope that you can find out as much as you can about this issue, and make a fully informed, extremely thought out decision. I wish you the best of luck, you have all the empathy i can possibly give,l and even if I dont post here anymore (or even check this site for several years to be quite frank) jsut reading this.....I now wnat to know your choice and ultimately how it plays out.
Again, i am SO SORRY for your troubles. I am so saddened to hear something like this to a young person such as yourself, and I am with you in spirit as much as I can be. Good luck, and if you believe in god or anything like that I hope that they're on your side here.
Respectfully, KMAC
I'm sorry to hear that u are going through this. Stay strong and DO NOT give up, and keep in mind that you will beat this.