Current Events > So I have a year left to live.

(+) Yeah! (+)

Give or take. Without going into great detail I have an inoperable and very aggressive tumor in my brain. I am able to undergo radiation treatment along with chemo, but I am undecided at this point (having found out this morning why Ive been having severe headaches and vomiting for no reason for the past several weeks) as to what I plan to do in that regard.

On one hand, it could up my lifespan prognosis by up to 5 years or more although anything beyond 5yrs is highly unlikely and even the 5yr mark is a potential long shot.

On the other hand Ive seen first hand what treatment does to people and while it did help to extend the lives of a few family members you could argue their quality of life wasnt that spectacular and they were merely around as opposed to living their final days.

I have not told anyone I know personally yet, including my mother, my son or my brother and his family (which is all the remaining family I have left). Im not even through processing myself. Its really thrown me for a loop, but it feels good to post this just as an outlet.

The most likely scenario without treatment is I get between 4 and 8 months. How great my QoL would be is an unknown as many different things could or couldnt happen to me physically due to the cancer. If my body holds off the extremely bad stuff I could have a fairly normal few months aside from the constant headache, which is tolerable for the most part and knowing my situation now, is something Im willing to power through to try my best to enjoy things.

When do I tell my family? My son in particular. Do I tell them? They dont even know Ive been to the doctor. I had a gut feeling this wasnt some ordinary thing which is why I didnt tell them.

I also have an ex who I would like to make amends with before I cant anymore. We didnt necessarily end on bad terms, but it wasnt exactly a happy split either. Note that it essentially ended because I called her out for some unfaithful behavior by having at least an emotional, if not also
a physical, affair behind my back.

That said, her and I have a very long history and in the end its water under the bridge. I still care for her and her kids (as she does for mine) and I think Id really like to be open with her, forgive her and just be friends until my time is up, but I also dont want to be that guy that is like yo Im dying, dont you feel like shit now?! which I have no intention of, but I could see her thinking I was trying to be that way. Ehh, probably just best to leave it alone.

I am going to quit working, but I do want to do the right thing and give them notice which would mean spending some of my remaining time working, but I figure I would be around people I enjoy for the most part and anything else I make is just extra to be left for my kid.

Man.this is a real mind fuck. Im trying my best to process my own mortality, but it is very tough. I just have so many thoughts running through my head right now. All the things I want to say to people. Should I say some things, should I stay quiet. Things I want to do personally, but feeling selfish over things I want to do that dont include my family, especially my son. Will I be a bad father if I do some things I always wanted to do alone or should I maximize every moment with him that I can?

Do I have to be open about this with anyone new I may meet or do I just live in the moment and let them deal with my death on their own after Im gone?

Do I opt for treatment and Hope it extends my life while also not ruining the quality of it? Treatment costs money to which is another factor. Do I want to basically waste that money to add a little time to my life or keep that money set aside for my kid either as part of his inheritance or even money that I spend on some wild stuff for he and I to do together?

All I can say is it is a very surreal feeling being given a shelf life. I am experiencing nearly every negative emotion in waves. It is very tough. I appreciate anyone who takes their time to read this as Im thankful to have this space to anonymously put my thoughts out into the world.

I don't know what to say. I can't imagine what you are going through . I hope you can figure out what to do to be happy. You probably should tell your son though. I'd try to spend time with him. How old is he?

Man, that sucks. Years ago I lost my husband to cancer, and in the year between his diagnosis and death the only thing I cared about was his happiness and comfort. I imagine your family feels the same way. I can't offer you any answers to the questions you've asked here; these are all issues you need to resolve yourself or with your loved ones. The only exception I can suggest is to hell with giving work notice if you don't want to waste any of your remaining time, as you put it. My heart goes out to you and your loved ones. You have a very rough road ahead, let your family help you. Let them love you. When things like this happen, love is all that's left and all that really matters.

That's fucking awful, can't even imagine what you're going through.

I'm not gonna tell you what to do but I think it's important you tell your family, I know if my dad was dying and didn't tell me I would be absolutely devestated.

This is awful news. I'm sorry. Hard decisions but make sure you do things for you from now on.

I had an aunt that went through a similar experience. They gave her drastically less time though. She didn't tell anyone how serious it was and by the time she even let anyone know it was pretty bad, her little bit of time was cut even shorter. I have no idea if she felt good about that decision. I hope so. I hope the same about the decisions you make with this too.

I support telling your family. If not for your sake, then theirs. People always day things they dont mean, as if it's a given the person will be there to make amends to later. Dont risk putting them into a position where they might never be able to feel they made amends.

For me, personally, on to do treatment or not.. it would come down to financials. Would the extra time I get allow me to make more money than I would be spending on treatment, to try and get a buffer for my family? It would it be best to forego treatment, and do what I could to stockpile as much money as I could in what time I had left.

My goals would be a mix of doing things I enjoy, and doing what I could to make sure my family enjoyed time with me and would be left with something after it was done.

Spend as much time with your son as you can. I'm so sorry.

MC_BatCommander posted...

That's fucking awful, can't even imagine what you're going through.

I'm not gonna tell you what to do but I think it's important you tell your family, I know if my dad was dying and didn't tell me I would be absolutely devestated.

Yeah, telling your family gives them time to prepare themselves for what is to come. Both in practical and emotional terms.

And I'm sorry dude, this sucks. I think the best you can do is get your affairs in order and try to make the best of the time you have left. I don't know what to tell you re: treatment, not being a medical professional, but ultimately that's a decision only you can make. Your life, and your death, are your own.

Damn that sucks, sorry to hear it

I'm really sorry, TC.

I can't imagine what you must be going through.

Sorry to hear this to TC. It really puts my small problems into perspective and makes them seem rather insignificant.

Do whats best for you and yours man and dont give up. Im rooting for you bro.

Sorry to hear that buddy. If your son is young maybe he can't comprehend at the moment what is going on. But maybe you could write him a letter or do a video message that he can be given in the future. Telling him how much you love him. So he can hear your voice. Maybe that's kind of cheesy.

wish you all the best

my uncle had a similar diagnosis. he lived 3 years longer than the 9 months they gave him

Im very sorry to hear this.

Please, see if CAR-T is an option for your tumor. Glioblastoma has had some positive results in the last 5 years.

Phone number is at the bottom.
https://www.cityofhope.org/research/car-t-cell-therapy/car-t-cell-therapy-for-brain-tumors

Man that is heavy. What's your relationship with your son? I feel I would probably base my decision on that.

SauI_Goodman posted...

Sorry to hear that buddy. If your son is young maybe he can't comprehend at the moment what is going on. But maybe you could write him a letter or do a video message that he can be given in the future. Telling him how much you love him. So he can hear your voice. Maybe that's kind of cheesy.

Nah I think that is actually a great idea

I'm going to give my input, myself not going through this, but having terminal members of my family before, and losing my brother suddenly, maybe it can offer perspective. This is solely about your inquiry about whether you should tell them now, wait, or not at all.

This is just from my experience going through this. I knew 3 people who were terminal and this came up with one of them during that time. When you break the news like this to someone, your remaining time will likely be different. People will act different around you, like you are fragile and breakable. You will likely be coddled more, everyone will want to see you, be around you. It can get overwhelming. It will be a lot of tears and apologies. You will be the primary focus at all gatherings.

I feel like this is an instance where you should be selfish, think about yourself and what you want going forward. Maybe only tell your immediate family and break the news later. Maybe you just want to carry on as is like normal for a while and keep living the way you have been. It should be up to you. Maybe you want them to know so you can work on doing things together while you can.

My brother took his own life. No nothing, note, reason. It was sudden, painful, but a one time shock and long heal. In the case of telling people you are terminal, they deal with that shock and pain, manage for a bit and go through it all over again the day it happens, depending on the individuals.

This is all stuff to think about and consider.

I think the point is, I dont know what you should do or how to handle this, but offering some perspective and maybe something here can help you. It's not advice, not saying listen to me, I'm just speaking from my experiences.

I wish you the best

Sorry to hear that tc. How old are you if you don't mind me asking?

This is heartbreaking, and really sobering. Really sorry to hear this. Wishing you all the best, TC, I hope you find peace in whatever decisions you make for yourself and your family.

I don't even know what to say now :/

Thank you to everyone for your thoughts, well wishes, etc...

I don't feel like quoting or tagging posts (whatever the hell it is these days, when I joined this site you couldn't even do those things iirc lol), but I'll answer a couple of the questions asked.

How old is my son? He will be 16 in October. Now that the ex I mentioned in the op are split, I am once again a single father who has had my son with very little input from his mother since he was 6 months old. He doesn't really see anyone from that side of his family outside of an Aunt.

How old am I? I will be 42 in May.

My condolences TC. I feel for you and would tell your son and family asap so they can process their emotions. I have no comment on the ex situation since from the brief snippet you gave it seems like she betrayed your trust big time so I know personally I would not want that person around me at the end but I don't know the details of why you do and if of course that's your call

Keep your head up. Be selfish with your time. Hope you can a lot of the things you dreamed of doing.

I'm sorry to hear this, dude. I don't think most of us can really grasp mortality even though it will come to us all at some point. I do things like tell myself there will be a "cure" for old age and terminal illnesses before I die even though I know it's highly unlikely.

I think your son is old enough to take the news, and maybe give his input on how you should proceed. Personally, I'd want to know if someone I loved was in that situation early so I could spend time with them and maybe tell them things I wouldn't normally. It may ease the shock of things possibly getting worse.

I wouldn't give up completely. There are "miracle" stories out there of people recovering from the shelf life given to them. Maybe do some meditation and try some alternative treatments.

I wish you and your family the best.

I got rid of a cancerous extra testicle with 5 years of daily marijuana use. I am one of a countless number of people, whose story gets labeled "anecdotal evidence" by mainstream medicine. I'm here to say, marijuana kills cancer. You should try, if for nothing else, as a last resort it if in a legal date. Even if it doesn't work for your specific cancer, it would at least make the remaining time on earth a bit better.

I know we might be a bunch of random strangers on the internet, TC. But, were all sending love your way. Im so sorry to hear

Be honest with your family. It will be the toughest thing youll ever have to do, but I think hiding things will hurt more for yourself. Speak the truth, and cherish every moment with your son. I know he will appreciate it.

Fuck man I'm so sorry. I can't comprehend going through something like that.

I think talking to the people you love and trust the most about your treatment will help a lot. Ultimately I think going for treatment and following the advice of your doctors is the best thing to do. 5 years isn't an insignificant shot to go for.

I'm sorry.

I'm so sorry. Please try to do everything you can before it's too late. And spend time with your son. There's no making this right but it doesn't have to rob you of any chance at happiness in the time you have left.

I cant begin to understand how you feel. I hope for the best, TC.

Im ao sorry man. But when it comes to your son you absolutely need to tell him. You could potentially scare that poor kid for life if he finds out you knew about your cancer in advance, blaming himself for not spending more time with you before you died. Be needs to know ASAP. Its okay to be selfish with your last days, but please inform those closest to you about your prognosis.

My dad was diagnosed with a brain tumor in late April 2020. He didn't last 11 months. It went from a grade 3 astrocytoma to a grade 4 multiform glioblastoma. Initially it was a 10 year prognosis, but then it turned to 1.5 years after they figured out it was a wild type instead of a mutant. Wild type does not respond well to treatment. My dad wasn't growing his tumor for a while after radiation and chemo, but he just couldn't take the chemo well and had complications after the initial surgery. He was just so tired from the medication and his condition and he was in bed 18bhrd a day. He might have gotten a cyst from that, but he had to get a surgery to drain it and give him a shunt. There's some other complications he had, but I'll say it later.

Anyway, my advice to you is:
1. Tell your family asap. Do not wait for the last minute. Get this out of the way.
2. Stop working.
3. Stay positive and motivated Nothing is guaranteed, but being positive and motivated helps. Do as much as you can independently by yourself. It will help a lot.
4. Eat as healthy as you can and be as active as you can. You will likely prescribed on a lot of medication. Seizure, appetite (if you need it), and a steroid to reduce the brain swelling. Have family go over the side effects. The steroid gives you a lot of energy, but it can make you an insomniac, give you hiccups.. and worst of all, it will spike your blood sugar. You could get type 2 diabetes. You need to be active to reduce blood sugar spikes and anything else. Your tumor or the combination of drugs might also make you more drowsy, but do your best not to stay in bed all day.
5. Look for clinical trials asap. Talk to your hospital and see if they have any available as well as any tier options. The neurosurgeons can have connections Have you or a family member do research. Car T cells could work. I tried to get my dad into City of Hope in California but it was too late. You could be a candidate. The sooner you contact, the more likely you could get in. They also have strict requirements like shunts could be a deal breaker and they will test your cognitive ability.

6. Diet part 2. This hasn't been peer reviewed with humans.. But it has some studies with mice, and it has worked for at least one guy with a brain tumor. A ketogenic diet could potentially shrink the tumor and make it small enough to be operable. Cancer feeds off carbohydates.

https://www.braintumourresearch.org/info-support/treatment/ketogenic-diet-therapy-for-brain-tumour-management

I literally read this story last month when it came out. Some dude had an inoperable tumor that gave him a year to live. He skipped radiation and chemo and tried the diet and it shrunk to the point where he was able to take it out. He hasn't grown the tumor since. He is still alive I think. Talk to your doctor about it. Maybe give it a shot.
https://www.the-sun.com/health/4801717/man-cancerous-tumour-survived-switching-diet/

If I could save you when I failed to save my dad, if would mean the world to me

I'm so sorry, TC. Whatever you decide, I hope you can make the best of your remaining time and have no regrets.

My sympathy man. This is a diagnosis I wouldn't wish on anyone. I'm not sure there is a right answer as to what to do here. We go through our lives thinking there's going to be a right answer someday but when the chips are down it's probably okay that there isn't one right answer.

While I'm sure you know that telling your family is likely a good idea sooner rather than later (I guess? I mean, I feel like this is a situation where not knowing would be even sadder than knowing) stuff like to tell your exes or your work, I think you should get to go with what feels right and not have to worry about being judged for it, you have enough to worry about.

I think I would probably go for the treatments, but I won't say that's what everyone should do. People should have a right to live and die as they see fit. I recently had family die and funerals are expensive too. Either way, the death of a loved one changes a lot of things. They might not mind spending money on you. But yeah even then it doesn't hurt to consider quality of life as you said.

I'm glad I could be here to read it and give my words of support at least, not posted here as much but I can tell you have good friends here who are thinking of you.

clyde_frog posted...

Its okay to be selfish with your last days,

I'd say if you're dying you've earned the right to do so.

Im so sorry. I really, really wish this werent the case for you. I dont even know what to sayI hope a miracle somehow reverses things.

It's probably best to let your son know soon. Nothing is going to take away the sting of loss, but knowing he made the most of it with you will keep him from regret.

I'm sorry, tc.

Sorry TC... Hope you can live your days out on your own terms...Not sure what to say sorry

@CellBlock7 Do. Not. Give Up. Time is of the essence. Spend as much time as you can with family, write a will if you haven't already, have you or family look for clinical trials, stay active and eat as healthy as you can.

You're gonna through a lot. You might not be the same person in a month or three, but stay positive.

Read post 41 if you haven't already.

My only advice would be to tell the people you love, so that they and you can enjoy your time together.

Condolences

That's fucking awful. So sorry.

Make this year count.