Afraid for my future

Hey guys. This is always a hard week for me, but extra hard this time around. It is the 17th anniversary of my first brain surgery tomorrow, and every prior anniversary felt like a victory. This time, I am facing down the barrel of a second surgery. I do not know what’s going to happen, but I am scared.

As a kid, it seemed pretty simple. Either refuse the surgery and definitely die, or get the surgery and maybe die. Since then, I have seen all the myriad of in between steps. I made friends through tumor support groups, and some of them are stuck in conditions I would consider worse than death. I also found out that I am the only person who has ever survived the surgery I had first time around. There were only 2 of us in the sample group, but the other kid had a horrible end. The surgeon has invented a new method that he thinks will work out better, but it is just such a rare condition and nobody has tried before. I would be literally the first human trial. That is scary.

I try to keep a positive attitude about things. I don’t like worrying people. But today I feel like I really wasted all that time in therapy learning how to plan for the future, and I might have been better off staying impulsive and short-sighted. I kind of feel like I let down my kids by even becoming a parent in the first place. That is kind of stupid, because lots of parents get terminal illnesses and nobody plans on it in advance. I tried my best to avoid it. It isn’t my fault.

Anyways, I just wanted a space to vent. I am trying not to be afraid in front of my IRL people cuz they are also scared for me and I can’t stand the looks on their faces when they think about it. Thanks for reading.

25 Likes

@Ninjastar, my heart goes to you…
You are brave, and done good job here…
I think that venting is good, and I will pray for you in my mind… :yellow_heart:

6 Likes

We are rooting for you ! That sounds like such a scary position to be in.

3 Likes

Hey Ninja. I think anybody would be scared in your situation.

If I were to guarantee the success of your surgery to try to console you, it would be a lie and would be meaningless. I desperately hope that it is a success, however.

You have not let anyone down.

Know that no matter what happens, you have made a massive positive impact here on the forum, and you have made a massive positive impact with your children and family, and the great things that you have done with your life will never go away.

You have done wonderful things, and I wish deeply that you will be able to continue to do more in the future.

9 Likes

Sending da (((hugs))).

:heart:

5 Likes

Rooting for you too!

3 Likes

I suffer migraines with vomiting probably once a fortnight, today has been hell so i can’t begin to imagine what its been like for you since childhood and the first operation.
I think you are a good example to your children to keep going when times are tough!
All the best!

3 Likes

Brain surgery is such a huge thing to go through.

Sounds overwhelming and scary.

Sorry to hear you are unwell.

Prayers and love your way.:pray:t4::two_hearts:

5 Likes

It’s hard to make peace with death when you are so involved with life. At my age, 78, the job is easier for me than it is for you. Still, retired and in a home, it is not easy. I wish you the best.

4 Likes

I want you to get your things in order, as though its your final sunrise.

Try to do that, and then let yourself rest. You have three possibilities. A successful surgery with little side effects, a successful surgery and a pretty grim outlook, and a fatal result.

You should be looking at techniques to learn and try to adapt with, if you get a surgery with pretty bad results. I hope and pray you get out of this unscathed but, life isn’t a thing you get to take for granted no matter what situation you’re in.

Sometimes we forget that. I really want you to settle things up, and prepare, and when the surgery comes, you go in, and accept death or life, and look forward to what happens after.

2 Likes

Hope everything works out @Ninjastar .

3 Likes

I wish you peace, a good outcome, and strength.

4 Likes

My thoughts are with you @Ninjastar— wishing you peace of mind and hoping for the best outcome for you :purple_heart:

5 Likes

I’m wishing you the best outcome @Ninjastar. You’ve been brave.

3 Likes

I am so sorry this is happening to you @Ninjastar It is a scary situation and the outcome is unpredictable. I think you are brave to recognize that and to try to come to terms with that. Then fight like hell to stack the odds in your favor. I hope everything goes well and that you have a positive outcome.

4 Likes

Hey @Ninjastar. I’m sorry you have this in front of you but sending you good vibes from downunder. I’m amazed how strong you’ve been dealing with all this plus a family but wish you only the best. Your a very brave human and I know your strong so hope the best outcome possible. Hugs.

4 Likes

@Ninjastar oh no, this is so awful for you…I am so sorry…I hope you get through the surgery and get to raise your children…so sorry…don’t know what to say to make you feel better.

2 Likes

You are in my thoughts and prayers @Ninjastar .

3 Likes

I don’t even know what to say. Say what I’m supposed to say, “good luck”, “get well”, “you’re strong”. Yes, well all of that, but mostly, this is crap and I’m pissed. I love you.

2 Likes

All I can do is tell you what I’d do if it were me.

If it’s not a terminal condition, and if I remember correctly it’s not, then I personally wouldn’t have the surgery.

I’d start planning for a reduced quality of life, and being more physically disabled.

But that’s just what I’d do if I was faced with it.

I’m sorry this is happening to you.

3 Likes