Are you treated like your a hazarded because of your tumor?

• By kkymmie13
• Reply 3503463
• October 31, 2012 at 1:00 am
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Don't give up!!! You are an angel and every life you touch is special. Right now you were brought into my life....that is special!!! Even if this is the only time I talk to you I feel honored. I suspect that this is probably the first of many conversations we will have. The people that make you want to give up....they have not experienced real life. Any real person would support you and help you any way they can. Stay strong, have faith and know that you are important. I am very honored to be speaking to you and want to wish you the best. Please friend me and if I can be of any help, let me know!!! kkymmie13@aol.com Take care an God Bless and most important lets be friends.

• By Chaltu
• Reply 3504321
• October 31, 2012 at 1:11 pm
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Oh my dear, don't let any of those negative people win. I understand how you feel, my own family neglected me and my two children. I have learned who is real and who is not as you know, God who broth us will always take care of us. Eventhoug we are not in the same place this site is great place to communicate get support at. Please stay strong and know that God is with us at all times.

• By Janacoco
• Reply 3505762
• November 1, 2012 at 7:35 am
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Dear loneranger444,

I think the answers to your questions are yes, yes, and yes. My son was diagnosed with a high grade tumor 13 months ago and since then, I have not had a single phone call, e-mail, card, visit or any other form of contact from any family member, including my mother and two sisters (one of which is a nurse) asking how my son is doing or asking how I am holding up, except during one call I initiated many months ago with my mother. Tumors just don't get as real as those in the brain and when it happens I think many people go into a form of emotional paralysis. They just flat don't know what to say, are afraid of saying the wrong thing, and I think there may be some degree of irrational fear because they cannot figure out how you got the tumor, so as far as they are concerned, if they talk to you over the phone, the tumor cells could creep through the phone line, go through their ear and get into their head, too. What you (and plenty of the rest of us) are dealing with are just people who are uninformed and/or have the emotional IQ of a boiled carrot.

I get the hurt part of your message. When I realized my son and I had been abandoned by my family when we needed them the most, I just turned to ash inside and found it hard to breathe for weeks. But what I found happens is that other people come into your life, people who are stronger emotionally, who are sincerely more helpful and sensitive. You may have to step out of your normal circuits to find them, but they are definitely out there.

For heaven's sake don't give up on yourself because there just happens to be some callous toads in your family bloodline. Lots of people have some of them.

All the best

• By agbecky
• Reply 3505798
• November 1, 2012 at 7:59 am
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Dear loneranger444,
You must be so strong! You have been through 4 tumors on your own? Are there any resources in your area where you could find a support group of some kind? If you live in a rural, remote area, there is support available where you can have a mentor on-line or by phone. I'm aware of Imerman Angels, that provides one-on-one cancer support, www.imermanangels.org. I think I saw that your tumors were benign. That is a huge thing to be thankful for. I'm sure there are similar support groups for brain tumors, not necessarily cancer. Unfortunately, my husband was diagnosed last December with grade IV glioblastoma. It is a very deadly, aggressive form of brain cancer. Are you on anti-seizure medication? I hope you can educate those people who are so rude to you that your tumors are not catching. No one knows what causes brain tumors. You take medication (likely)so you will not have a seizure when you are driving, or any other time. I'm sorry to hear you are putting up with such rotten attitudes. You have come to the right place for support. There are many of us out here, linked only by this web site and the common link of brain tumors. We care about you and your struggles. I'll pray for you today, that God will provide someone to encourage and support you, and that the 4th tumor will be your last.
Becky

• By 262runner
• Reply 3505852
• November 1, 2012 at 8:21 am
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I had the support of my family but I was held out from work for 4-6 weeks because of seizures. I almost and sometimes do get panic attacks because of the threat of seizures. My surgery was in 2/10, so it can take some time. Stay strong.

• By briggs
• Reply 3505983
• November 1, 2012 at 9:12 am
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Only our close family members understand this thing called a brain tumor. I stopped trying to explain it to others who just do not understand ,or do not care. We are trying to start a support group in our area for brain tumor patients,and their family. it will help us,and other families who just need to talk. Without our heavenly father we would not have made it thus far. Kathy, Toms wife.

• By LERATO
• Reply 3508836
• November 2, 2012 at 9:26 am
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loneranger444,

Please do not give up on life, everything that happens to you is on purpose, God takes you through these things for you to make a difference to other people. People have always talked and you should not feel bad, that is life. Please do not get hurt, they might be having worst things that they are hiding. Stay blessed, just remember that God loves you always.

Please stay strong.

• By suzieta
• Reply 3510191
• November 2, 2012 at 5:27 pm
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I can only imagine how you feel. My husband had a brain tumor removed and he has been pretty isolated since so he has not had that experience. But what I have noticed is that many people just do not know how to respond to this kind of situation. I have to remember that and not get hurt by their ignorant questions, etc. Keep expanding your support network and "go where it is warm".

Take care - Suzie

• By 111BETSY111
• Reply 3516675
• November 5, 2012 at 8:32 am
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Yes........... Most people talk to me but now I am a leperw

• By LERATO
• Reply 3516846
• November 5, 2012 at 9:29 am
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The Bible says, be still and know that i am God. He intervenes in every situation, especially when you trust him and have faith in him. He will not let you down, no matter what.

• By 111BETSY111
• Reply 3519262
• November 6, 2012 at 1:57 am
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Most people r good......some just do know know how to deal with it.............it IS a shock....am back in hospital.......... Lots of clotting in legs and lungs.........have an area cava filter in.......... Tired.....bed

• By MMY
• Reply 3519672 · In reply to 3505762 by Janacoco
• November 6, 2012 at 8:48 am
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Loneranger444---I have not had 4 tumors like you but have one meningioma that I have known about for a little over a year. While I have not been treated like an outcast, I am struck by how (except for 1 or 2 close friends) nearly everyone in my life including family members have completely ignores the reality that I have a BT. Nobody asks me how I am doing or credits me for finding strength in my diagnosis. You are not alone in that feeling and you are stronger than you think!

Janacoco---I was really struck by your use of term "emotional paralysis," especially in the case of your son's BT! You have hit the nail on the head and I am so sorry that, in addition to dealing with your son's BT, you have had to experience that too. I sometimes try to make excuses for my loved ones, thinking that "I guess it is just too hard for them to talk about," or "maybe they just don't know that the BT is on my mind and they are afraid to bring it up," but mostly, I am just shocked, surprised and disappointed that seemingly very educated, loving family members who live nearby and I speak to regularly have managed to completely ignore the entire thing since I told them about it last year! It is hard not to get angry. Sometimes you just want someone to ask you how you (or in your case you AND your son) are holding up! How have you managed to cope with them? Or has this ignoring of your son's BT caused a strain on your relationships?

• By jaypaul
• Reply 3520214
• November 6, 2012 at 12:00 pm
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Loneranger444- fortuantely I have not had those problems with ignornant people making those negative thoughts and comments. They truly are illiterate when it comes to brain cancer, so you can do your best by offering THEM some education of what you are going through and what it is like. Many people are ignornant agout their disease, including the patients! So take power and learn as much as you can to share with those who are making negative comments, because they don't understand and have the literacy to what you are dealing with. Empower yourself, and teach those family and friends so they can be enlighted, and then they will be able to help you and provide you the support you need. If you cannot find any library books or websites on your brain disease, talk to your cancer doctor to assist you. Good luck.

John

• By 111BETSY111
• Reply 3521969
• November 7, 2012 at 1:15 am
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I have only noticed a couple people out of 100's of friends and family that were strange ( which is fear).........

.. I pray for them............. Now it has been over 1 month and the support is overwhelming....

I do research on OGLIO everyday, plus I have begun a local support group for BRAIN CANCER patients........it is all becoming more clear if I get out of the way ...GOD leads me

If ANYONE ON FACEBOOK is negative..... They r no longer friends ....I have deleted

Love this site

• By ladyj56
• Reply 3549220 · In reply to 3519962 by tguntek
• November 16, 2012 at 1:49 pm
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i am curious to know where your tumor is?
mine is a low grade glioma on the ocicipital lobe..i am finding the left eye is also droopy sometimes,,has strain...bags under the eye
and also hurts if i look too sharply to the left
i am seeing neurologist.neurosurgeon.neuro opthomoligist
and still feel like i know nothing..then last week i request a print out from the surgeon,,and this was 1 week after my appt with him
he said all is stable...that was it..it has grown from,,1x7 1x7 1x7 mm to 1x9 x1x7x1x8mm
it started out in 2009 as 2.2x1.1x1.7
when i read the actual report..says NEAR STABLE.....it is undersurface of the tentorium,,,narrowing of the distal straight sinus
also a small DVA,,noted....hmmmm thought someone would have mentioned these to me
he wants it to take a stand...what exactly does this mean..can anyone enlighten me?
everyone here has such compassion i am so grateful for this site...i see so many of us are in the same boat as far as emotions go..noone knows what to say when or how.....some even say ..OH GOOD ITS NOT CANCER....good heavens there is nothing good about a timebomb ticking in your head and you have no idea what to do about it..docs are great when you ask direct questions,,but unless i see these printouts..i really have no questions,,,he says stable........oh dear
god bless us all
Loneranger 444///hang in here ...i find a lot of support here and can manage bad days,,,i went from working 40 hrs a week,,going to the gym 3 days a week etc etc very very active,,,now some days the only outside i see is when i look out the window,,,
take care

• By 111BETSY111
• Reply 3550773 · In reply to 3505983 by briggs
• November 17, 2012 at 5:09 am
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I agree......only a very small select group can even begin to understand......so I do not discuss with other..............it is too frustrating for me........at this time, I need 110% support.

I understand, being in this body............ God understands................and then the few people athat God has chosn to understand.

Brain Tumor is complex............

Thank you all for sharing..........it truly helps me.

• By 111BETSY111
• Reply 3550775 · In reply to 3516846 by LERATO
• November 17, 2012 at 5:11 am
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Dearest Lerato,

Perfect.....God bless you.
Miss Betsy

• By 111BETSY111
• Reply 3550780 · In reply to 3519672 by MMY
• November 17, 2012 at 5:22 am
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DENIAL.........

EVEN THOUGHT PEOPLE INTELLECTUALLY KNOW U HAVE IT, THE EMOTIONAL SIDE IS OVERWHELMING FOR THEM............IT IS VERY SCARY FOR THEM..............THEY DO NOT KNOW HOW TO REACT.....SO THEY ARE JUST 'WEIRD'OR IGNORE IT.........GIVE THEM TIME...PRAY FOR THEM AND GOD WILL HEAR.

THIS HAS HAPPENED IN A VARIETY OF WAYS FOR ME................BUT GOD IS DOING HIS MAGIC.

'FUERZA'.....SPANISH FOR STRONG.......STRENGTH..........................WE ARE THAT..........................GOD KNOWS IT......AND WE HAVE FAITH IN GOD..........

• By 111BETSY111
• Reply 3550786 · In reply to 3549220 by ladyj56
• November 17, 2012 at 5:35 am
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NO MATTER WHAT..........CANCER OR NOT......IT IS SERIOUS.

MINE IS CANCER.........PARIETAL SECTION DEEP, RIGHT SIDE, AFFECTS LEFT LEG MOVEMENT, SO LEFT LEG IS PARTIALLY PARALYZED......THEY GOT 1/3 OF IT DOING CRANIOTOMY, 2/3 IS STILL IN, CANEROUS. ................ THE TUMOR IS SLOW GROWIN SO FOR NOW, TEMPORARLY WE WAIT, WATCH AND SEE.......

TALK AOUT THE BEST LESSON IN PATIENCE EVER !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I LEARNED TO PRAY DEEPLY........... INTENSITY IS DIFFERENT.............I KNOW HE HEARS ME

I LIKE LOOKING UP EVERY WORD FOR 'STRENGTH'........... IN DIFFERENT LANGUAGES............I USE THEM ALL, DAILY.

• By Davidlb
• Reply 3550967
• November 17, 2012 at 8:13 am
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I find that a lot of airplanes put me in the window seat... thereby making it easier for others to evacuate.

Fourth Tumor? I wonder whether your diet is at issue? Too much sugar, for example...

Best

David