After 13 years I'm giving up medical treatment for my brain tumour

I have been living with a brain tumour for 13 years now I was diagnosed when I was 23 in 2002. I always swore I would fight to the bitter end doing what was demanded of me just to eek out some extra years. I was initially given a prognosis of 3 to 5 years.

In 2014 I had a stroke which has left me partially paralysed down my left hand side after learning to walk again in September in December It was discovered my tumour had returned. I had surgery in February and 6 months chemo that ended a few months ago. Only for my tumour to have returned again, so quickly after all the chemo.

The fight now feels more like a physical and mental torture, that I don't think I can handle. My options are to have more surgery making it my 5th and then to have radio therapy after wards or to go with radiotherapy now and miss out on more surgery.

The problem with the surgery is that because I have had 4 operations on my brain already. It's much more dangerous and the wound is becoming more difficult to heal. After my last surgery I spent 4 months in hospital with problems from leaks from the scar I hate being in hospital. I don't eat or sleep well done have difficulty with bowel movements. Also because my left sided paralysis I need a lot of help getting to the bathroom and about generally. I think I've had enough and don't want to keep going through with stressful surgeries and depressing hospital time. I've really put myself through a lot of punishing treatments over the last 13 years even having a 5 hr awake brain surgery.
I really want to keep going, because I'm expecting to become an uncle in February. So don't want to miss it, but I'm just not sure I have any fight left in me. I'm surviving at the moment on anti sickness medication and steroids which reduce any swelling in my head. My other option is to just have the radiotherapy, but they are concerned it's my second lot of radiotherapy in 13 years which has less chance of successes. Im not asking for any medical advice my Drs have kept me going pretty well for 13 good years, so I follow their advice, rather than ask for it from anonymous strangers. No offence ATS members, I just don't want to feel like I'm throwing in the towel too early. If the radiotherapy is still an option then I think that will be my last throw of the dice, just not sure I can cope with more surgery and the complications that comes with the healing process. I'm just sick of hospitals, tests scans the whole thing. I'll just do my best to relax till Wednesday to make my decision try and and just relax, which isn't easy
I will need to make a decision on Wednesday I think the human survival instinct and human ego makes things tougher as you just want to keep living and don't want to end. Anyway I just wanted to get this off my chest as its never easy to talk about these subjects. I just don't know what to do with the rest of my time. I think I'm ready to die, I just don't want to suffer too much pain. I'll still be around on ATS as it provides a great distraction for my mind. I'm not expecting sympathy or a pity party, just wanted to get it off my chest and let my ATS buddies know where I'm at. I've been listening to a lot of audio books, people like Alan watts and ram dass on the subject of death which I have been getting a certain amount of comfort from so any recommendations on along the same lines would be appreciated. Nothing too dogmatic

a reply to: woodwardjnr

Its easy for me to say but , fall down nine times stand up ten brother . Stand up ten . Get yourself better .

a reply to: woodwardjnr

Ohhh, your words make me cry. I did not know all this about you. You have put up a very brave battle indeed. I pray that you can somehow be comfortable and not in pain.

If you have the strength perhaps February will keep you wanting to be here.

All I can do is wish you the love of a stranger to you and your family.

originally posted by: hutch622
a reply to: woodwardjnr

Its easy for me to say but , fall down nine times stand up ten brother . Stand up ten .

I'm afraid that's the attitude I might take

a reply to: Revolution9 thanks

a reply to: woodwardjnr

I would never have guessed from reading your threads you suffered from a brain tumour.

Its times when I want to send my best that I don't know what to say that doesn't sound trite or anything else. I have gone through the search for what I believe in carefully and I honestly believe we or part of us comes back again and again reincarnating through the spectrum. All things have life in them so I don't believe in death except as a shedding and rebirth.

The only thing for reading I can say is to read anything you think will give you pleasure. I always only read non-fiction but, after spending time on my back due to operations I found the fun distraction worked amazingly well. If you can get into this Terry Brooks books are brilliant and have a continuity of flow through a world totally unrelated to ours and whats happening to us.

Thank you for letting us know where you are at and know you are in our thoughts.

I hope that you're comfortable with whatever decision you choose. I am obviously nowhere near your position, but I sure do know what it feels like to not want to keep going anymore. Best wishes.

a reply to: woodwardjnr

My condolences.

Personally, having to have constant medical treatment such as yours does not constitute a quality life. You said it yourself, you're surviving. You're not living.

I personally would not do what you're doing. 13 years is a long time to be fighting something that keeps beating me. I would tell my loved ones in advance what my plans are, liquidate my assets and leave the way I came.......wirh a clean slate.

I was born with people loving me and I would die the same way. The difference of course would be that I would be leaving on my own terms. My choice.

Man, you have been through the wringer and undoubtedly you have had to make some tough choices over the last 13 years.

Whatever you decide needs to be your decision alone, so I won't try to persuade you either way.

Just know that this stranger's thoughts are with you, in whatever you decide, along with many of the online family here.

I wish you all the best and glad to hear you will still be mixing it amongst the boards.

a reply to: woodwardjnr

Jeez man, you've brought tears to me eyes with that. Life can seem so unfair that it appears senseless and why should any of that happen to you? I can remember you posting a selfie in a canoe or something and you're a healthy guy barring this f***ing tumour. It's tragic that you have so much going for you. You're classy and empathetic in your posts and constantly come across like a great human.

I think I'm ready to die, I just don't want to suffer too much pain.

That underlined word is telling. It says you aren't ready and are looking for a reason to get back in the ring and fight the f***ing tumour. I don't know if anyone on the internet can give you that reason - stranger things have happened. Hopefully someone will surprise you.

It's a dumb question and I'll ask it anyway: are you speaking to people like counsellors and chaplains? When we think about our own deaths, it's surprisingly common that both sides of the 'belief coin' have thought-provoking insights.

a reply to: woodwardjnr

13 years is a long time to endure the torture. For that, you have my attention and admiration.
No one can give you any advice that is right, since you are the only one that knows how much more you can endure.
I hope that you find peace now and forever.

a reply to: woodwardjnr

Obviously, your situation is a gloomy one but... what is almost just as sad is that you have felt you needed to keep this burden to yourself.

Thank you for telling your story.

As far as how your path evolves, you are the sole arbiter of your destiny at this point. A person has a few obvious paths before them but there are several less obvious ones they never see. Maybe you will find one of those paths.

a reply to: Shiloh7 don't worry I never know what to say in these type of threads even with the experiences I've had. I find I'm still not very good at finding the right words I think that's because there aren't any right words. Though the responses to this thread have been interesting considering the subject matter, so thanks to everyone who has responded

a reply to: woodwardjnr

You are such a brave man! All I can say is what I usually tell my patients: don't give up. The only thing that can't be fixed is death, so while you are still alive fight it all.... you never know what the outcome will be!

But I am not here to give you advice.... I am here to tell you how much admiration I have for people like you, who have the courage to fight for their lives and futures, despite of all the obstacles.... you are an inspiration!

Meeting patients like you have taught me more than three years at uni: I have learned to change my priorities and I have learned to enjoy every minute on this planet.... and to never give up!

The surgeries take a lot out of you, dealing with stroke too isn't easy, it's been a long hard struggle for you. My hat off to you. I have been reading a lot of eastern spiritual books recently, The Tao of Pooh by Benjamin Hoff and When Things Fall Apart: Heart Advice for Difficult Times by Pema Chödrön. When I want to escape into easy reading I go for murder mysteries, simple ones like Agatha Christie. Not sure if any of these will help. Prayers are with you.

a reply to: woodwardjnr

I'm afraid that's the attitude I might take

Wow once again i am not in your shoes , but never be afraid to fight for your life . Ultimately its your choice but i am positive i know which path i hope you take .

a reply to: woodwardjnr

Ok, I'll be the one to say it even if you don't want to hear it - don't give up!
I'm so shocked to read all of that, I had no idea. I like a lot of your posts - you show compassion, tolerance and decency, and you aren't afraid to put your point over clearly.
We need you on ATS!!!

Obviously, it's none of my business really and whatever is, is. Nothing could possibly change my opinion of you, I think you're a great guy (for whatever that's worth )

The thought of enduring more suffering must be overwhelming though at times. It must be exhausting. And to hold your new nephew in your arms, well yes that would be worth the struggle. I can see why you're torn.
Any books and all books would be my only recommendation, authors you love and who give you pleasure, to give you some respite from agonising over such a monumental decision.
Wishing you lots of luck on Wed,

B x

I think I can understand where you're coming from in terms of feeling like it's time to throw in the towel... 13 years is a long time to endure this damn battle and it would, no doubt, beat down even the most stubborn of us.

But I can also hear a slight "f*** that noise, I'm not ready to give up yet" in the words you're typing.

Personally speaking, I hope you wake up one day soon and lift back up that sword and shield, muster up the strength once again, and continue on with the battle right to the bitter end.

Valhalla can damn well wait.



But whatever you decide, just know that you've got a whole whack of us amigos here on ATS to be your shoulder when you feel the need... even if only on a virtual basis.

You should not be walking this journey alone.

a reply to: woodwardjnr

On a regular basis, as I am lying in bed before sleep, I play out a mental scenario of some doctor telling me I have cancer and I respond with "Finally!", "It's about time!" or "You promise?" .

I find some relief, some rebellious righteousness in the idea of facing this kind of news with a "screw this world and life anyway" kind of defiance.

And yet, I know it's a different thing when truly confronting it. And I'm so sorry that you are in that place.
I like to think I could refuse treatment. I honestly do not want to be a heavily medicated, multi-surgeried old person in a nursing home one day. I don't want to linger in this world like that. I've lost several people I've known - one very close to me that died of cancer before they were 30. I always think "Well, no matter what I haven't done in my life, they never had the chance to not do those things for as long as I have, and they should have."

It's easy to urge you to carry on - to keep fighting. That's what me and everyone else did to the people I've seen go.
I'm not going to sugarcoat a response to you because you don't deserve that. I also feel like that would be lying in that it's not anywhere near a choice I would make. In fact, I like to think I wouldn't even try 10% as hard as you have already. I fear the reaction of other people in my life learning about some imminent end of mine and changing how they respond to me more than the actual bad news. I've seen it happen firsthand and I imagine it as a kind of horror they don't show in movies. People not treating you as they used to and such. Suddenly, you're their outlet for being a positive influence. In reality, they just don't know HOW to react, really.

No matter your decision, I hope you face it with voracity. If you keep trying, I hope you blow expectations away and survive. If it's to not fight so damn hard, then I hope you get a few more moments of really tasting some excellent moments of your life. Eat your favorite foods like a pig if you can stomach them. Jump from a plane if that's a goal or anything like that. I hope you have the where-withal to have control of your life to the very end. I hope that for nearly everyone really. All the good folks anyway. And most folks are good folks. And especially, find peace in yourself with either path you take.

It is a less than ideal situation you find yourself in. I am reluctant to comment. I have lost people I loved dearly. I almost feel guilty for being perfectly healthy after the way I have treated this body I inhabit. Do what you feel is best and know that this is just the beginning. I don't know you but I give you my love.