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life after brain surgery

danishguy40
Posts: 3
Joined: Jul 2012

was wondering if anyone has the same symptoms i have? i was diagnosed with a brain tumor back in jan. of 09. i dont remember the name but i do remember the doctor telling me that it is a rare tumor and very aggressive. needless to say i had the tumor removed just above my right ear.since then i have had a list of problems, sensitivity to light constant loud ringing in ears,trouble using my hands at times,constant pain were the doctor installed a plate on my skull.seizures,tremors always tired some days are ok but others i would rather just stay in bed. since taking those awful chemo pills for a year i now have ulcers in my stomach and my esaphagus.almost three years now cancer free and hope many many more years. mine was a level 2. i try and talk to people about what i am going through and what a daily struggle it has been since surgery but i get these looks like im crazy.even my doctor is starting to get tired of my constant complaints about my health i wish there was a doctor in arkansas that knew more about life after brain cancer.and all its side effects. i try and talk to my family about it but you can tell they think i am over reacting. i really do not think people who have not struggled with cancer dont understand at all. i do worry though just about every day if my tumor has returned. going through brain surgery was so hard. migraine headaches the vertigo bad dizzy spells.even now i dont enjoy being outside the light really bothers me i dont feel comfertable until its dark out.i used to work outdoors and loved my job hated being inside.now the sunlight is to much.even my spelling now isnt so good anymore i studder at times and have memory loss. its just hard being this way now,i went from being a physically fit 37 year old male who never got sick to what i am today. the doctors dont have a clue as to why i got this type of tumor but the one thing that haunts me everyday was when the doctor that removed the tumor told me that i will not live a long life with my condition. that again the tumor i had is very aggressive he stated that he removed more brain tissue around the tumor just to be safe that everything was removed. i was lucky not to have radiation from what i hear its alot worse then chemo. god bless you all for having to struggle with cancer thank you for reading my little novel but i just feel its time that i start to let go and start living. i have finally found god and well since then my life seems to be getting easier everyday. there are no support groups that i am aware of in my area that deal with brain cancer so i came across this site and read some of the blogs on hear that just about made me cry there are alot of good people on here and i will pray that you all stay healthy again god bless

princesspurple
Posts: 6
Joined: Jul 2012

I'm sorry you've been struggling. It sounds like you might benefit from learning more about your medical history and seeking a second opinion. Knowledge really is empowering, and oftentimes we need to be our own best advocates. They might be able to get some of the symptoms you're currently experiencing under better control.
You're definitely not alone. I know how easy it is to feel this way. I'm still in my 20s and most of my friends and peers just can't relate. I remember back when this all started (11/08 for me), I naively thought that one day maybe my life would go back to "normal." And what I've learned since then, is that while things will never go back to exactly as they were before, that doesn't mean that they can't still be great and full of joyful moments. And it also doesn't mean that we can't continue to hope and believe that they can be better than they are right now.
Best of luck to you.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Great comments, princesspurple! I totally agree....life can still be full of great moments, even after a cancer diagnosis. Yes, things are different, but there are still lots of joyful, blessed moments. After my son was diagnosed with a grade 3 oligodendoglioma, we started cherishing every moment, and we have had a lot of great times.

Danishguy40, hang in there! Don't let the lack of understanding from others keep you from finding great moments in your life. Personally, I want to slap your doctor silly for not taking your lingering side effects seriously and for not treating them aggressively. Is there any chance that you could find a different oncologist? Are you at a large teaching hospital or university with a great brain cancer treatment center? My son and I are in Salem, Oregon, and his treatment is based at OHSU (Oregon Health Sciences University) in Portland, an hour away. But Salem (even though it's not a large city) has a hospital with a great cancer institute and a caregiver/survivor support group that has helped me so much. There's nothing like that near you? Please continue to post on this site regardless. I have received so much support and comfort from the other members of this site. People here truly understand what you are going through and empathize with you. It's amazing how connected I feel with people here on CSN...people that I will probably never meet face to face or even hear their voice. Yet they are the ones who have really stood by me and have helped me walk this terrible journey that we all are taking as we battle brain cancer.

I had a physical therapist tell me something that I have found to be so true...she said that our battle with cancer would be like our Oregon weather....one day things could go well and our life would be bright and sunny, and then the very next day, things could seem worse and it would be dark and rainy and gloomy. But just because one day is dark and rainy does not mean that the next day won't be bright and sunny again. It's so true. We've had some really bad, dark times, but then we've had things turn totally around. We just do not know what the future holds.

Stay strong! Fight hard! Hold on to hope!
Love and blessings,
Cindy in Salem, OR

sonfollower
Posts: 26
Joined: Nov 2010

Cindy,
I would have to agree with everything you have said. I love the comparison to the weather and the day. It is so true. I have had days that are so good that I almost forget that I have brain cancer, then the next day, I can hardly get out of bed because of a headache that hurts so bad Im afraid to move.
I have found support on this site some days just be reading the other posts that are on here. I know that there is a brain cancer support group in my town and I keep marking the calender to go, but wouldnt you know it, something else keeps coming up that I have to go to instead. I hope that I can get to one this next month.
I have to get up every morning and remember to be thankful for the day that I have been given. Enjoy the day. Look for something good. Even something small, like its not raining again today.

Danishguy40, if you are a believer, do you listen to christian music. I have become a really big fan of the group Kutless. They have a new CD out called Believe and there is a song on there called Even If.. This has become my life song for right now. It talks about the goodness and faithfulness of God even if the healing never comes. This song lifts my spirits and help keep my mind in perspective.
God bless.
Lora

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