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Need help please...

MinnieMN
Posts: 47
Joined: Aug 2009

Hi everyone, I have a brain tumor, and it doesn't look good apparently, and I am having a hugely hard time dealing with this. I am either in denial or an emotional mess. I've pretty much not told a lot of people-not even my family, so I currently don't have any support or anyone to talk to. Is there anyone that I could just e-mail back and forth? I'm scared...

Thanks so much for your help.

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

Hello MinnieMN,

You came to the right place for help. My wife has been battling brain cancer for over 3 years. It is a roller coaster ride. As you will soon discover, there are a lot of folks on this board going through the same thing. We all have different ways of dealing with it. I don't know whether or not you believe in God. As I read your post to my wife, she said "trust in God". That is what we are doing. That is the main thing that has been our comfort through it all. We know that He is in control and He uses people like the ones you will find here to strengthen and encourage each other. With the Lord we do have peace, and we know that with him "all things are possible". I would also suggest, whether you are a believer or not, talk to your family or friends. The worst thing you can do is try to keep it to yourself. I don't know your family status, but someone out there, a loved one, a family member, or a friend wants to listen. You need for someone to listen. My wife and I know, as difficult as it is, that God has a plan for us and a reason for allowing this disease into our lives. We are both 30 years old and have 3 young children, so why would God allow my wife to be diagnosed with terminal brain cancer? I don't know why, but we take comfort in the fact that God knows why. We have received many, many blessings since the diagnosis in 2006, and perhaps somehow others are being blessed through our experience and our solid faith in Christ. Perhaps God has even used us to help save a lost sole.
Do you know what kind of brain tumor it is, or how it is being treated?

MinnieMN
Posts: 47
Joined: Aug 2009

Thank you so much for your reply. I do believe in God, but I have been asking Him lots of questions lately! I'm really just afraid of what lies ahead. I'm a little less in a panic this morning, thank goodness. I'll have to go into denial a bit so I can get some housework and laundry done. I have oligodendroglioma grade 3. I've done a little tiny bit of research (what I can stand). Does anyone else here have this?

sue Siwek
Posts: 281
Joined: Jun 2009

minnie, my husband has a grade 3 astrocytoma, anything regarding the brain is very serious. the first thing that i would tell you is to go to a teaching hospital where the latest treatments are. i can tell that you are feeling helpless, that is normal. you need to confide in someone who will advocate for you because you are dealing with enough already. ignoring this will not make it go away and you need someone in your corner. get online and find the best cancer hospital in you area. not the nearest hospital in your town but the best with in a reasonable distance. my husband has survived nearly 10 years and i give much credit to our finding henry ford hospital in detroit michigan. it was an hour and a half drive to get there but worth it. tell somebody so they can help you! this is something you should not do alone because it will be a long and difficult road but don't give up.

MinnieMN
Posts: 47
Joined: Aug 2009

I just wanted to pop in and say that it has been a rough day. I'm walking around like I'm drunk but I haven't had a drop to drink. My eyes keep rolling around in my head, and I'm very unbalanced. I guess that's one of the symptoms. Is it something that I should be concerned about (is it a prelude to something that I should go to the ER about?), or is just a symptom that comes and goes?

I am going to the University of M for my treatment, I think. Any recommendations from this area?

Thanks so much for your help!

sue Siwek
Posts: 281
Joined: Jun 2009

not sure but get in contact with your doctors. you are going to a wonderful hospital and they have all kinds of help available to you. do not be afraid to ask they are their to help. please ask for help.

sue Siwek
Posts: 281
Joined: Jun 2009

not sure but get in contact with your doctors. you are going to a wonderful hospital and they have all kinds of help available to you. do not be afraid to ask they are their to help. please ask for help.

boe62's picture
boe62
Posts: 9
Joined: Aug 2009

minnie what your going thru is very understandable,i dont know how close u r with family ,but they need to know,,or your best freind ,,ive known about mine for around 10 yrs,ive had a very good wife thats help me so much!! minnie i dont know how u stand with JESUS,,but call on HIM ,,about 4yrs ago things got worse for me , i had to start chemo and radiation treatments, radiation treatment made a mask to hold my head down,scared the heck out of me ,when my first treatment started ,week or so before,i rededicated myself to GOD,on that first treatment as they were about to begin, I started praying to JESUS for courage, i'm not telling u some kind of story, minnie he gave me the courage I needed, and he will do the same for you. Ask HIM for what ever u need. But, I still would get your family or best freind involved. Let me know how your doing,I will keep you in my prayers!

May the Lord Bless You with HIS healing Hands!
David Lancaster.

Mannie
Posts: 51
Joined: Oct 2008

I didn't tell very many people either when I was first diagnosed and I walked around drunken also without drinking. I completely understand that feeling but I come with the perspective of the survivor, not the caregiver. I think it's a personal choice who you tell and if you tell. I once saw a pamphlet that said "You don't have to confront cancer alone" and thought to myself...but it's a lot easier. I've told that to people that don't share that same mind set and they do not understand where I'm coming from at all. I'm not saying that I think you should keep it to yourself forever because your family should know. But how much your family knows can and probably should be limited at times. For example, my grandma can't know much about me (or my dad for that matter, he has serious lung diseases) at all because she tells everyone everything no matter what it is. There are some people that I couldn't tell anything to because it would definitely be detrimental to myself. My son's father couldn't know anything and he still doesn't because that would be detrimental to myself and my son. Then there are some people who don't deserve to know anything, casual acquaintances for example.

I can identify completely with being in denial or something else. I had that same feeling. I think I still have that feeling. For me though, I think it was also just my survivor's mentality.

Take Care,
Mannie

MinnieMN
Posts: 47
Joined: Aug 2009

Like I need support, but I have told a few friends, and I have been let down by one majorly. At first, she was all "I'm going to do this and that, and you need to fight, and my mom and I are going to help you with this and that, and I'll call you." But then, the day that she's supposed to help me with this or that, she was nowhere to be found, and she hasn't called when she said she would, so I feel like a weird person trying to call her or remind her, so I'm just going to have to let that friendship go. She was more of an acquaintance that found out because she's a friend of a friend, but all of a sudden, she was all about being MY friend-yeah right. Some people have good intentions at first, but eventually, some people do disappoint. She just got married and is living in the fast lane, and I, unfortunately, have made a distinctive switch into the slow lane, and this is hard to accept, but I don't want to hold anyone else back.

I found out some more not so good news yesterday. I've taken the last couple of days off of work. I'm hoping hoping hoping that I'll be able to return to work on Monday. (crosses fingers). I hope that this lonely, confused feeling subsides a little today. Woke up (it is 5:30 am) with major head pain-owie!

Thank you everyone so much for your input-it is so good to get the opinions of people that have been there and done that. You all have a good day today. :)

tommybear
Posts: 112
Joined: Oct 2009

I did have issues with the way others responded to my "condition" in the beginning. And sometimes even now. One thing that I realized is that people aren't always trying to hurt our feelings or not speak to us, but that people just have to deal with their feelings in different ways. I had a few co-workers who would not speak to me at all after they found out that I had a brain tumor, I was avoided and treated like I was contagious, but have realized that usually these people are those that are having a difficult time dealing with their own feelings and don't want to hurt us. I would just go home and cry that noone would speak to me. I have learned to reach out for those people and that has helped many people to feel comfortable in talking to me. I think they also learned that I am still Michele and that I am not going anywhere soon. (I just found out in July that I had a tumor - had surgery August 24th and was diagnosed with a Grade II Astrocytoma. My surgeon was able to remove 1/2 of it and I am scheduled for stereotactic radiosurgery in a few weeks.)

Do you know what kind of treatment you are going to have? Where is your tumor located?

nannyslilangel's picture
nannyslilangel
Posts: 9
Joined: Jul 2009

My name is Lisa. When I was 27 I was told I had a JPA (juvinile pilocytic astrocytoma) I am luky my whole family was behind me. My doctors didn't think I would make it, but here I am 4 and a years later alive and kicking! I did it and so can you! we can chat anytime you want. Please talk to your family they can help. I hope you feel better, but if you need to scream and chat really loudly I'm here.

lilmissy
Posts: 3
Joined: Oct 2009

I had a grade 3 astrocytoma and my family came together to hold me up. The support from them was what got me through.
I didn't have this message board. My Mom did a lot of scary research. I will help you any way I can.

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