Wednesday, 26 February 2014

What meningioma survivors want you to know ....


So I was backstage after a performance/competition this week in St. Louis (I'm a pianist), and a neurosurgeon there said the classic line,"Well, if you're going to have a brain tumor, a meningioma is the one to have." With members of the St. Louis Symphony and others present there, I politely commented that the meningioma is anything but benign. (Keep raising awareness, as gently as possible, wherever you are!) So after 18 years of hearing such comments and learning about myself through this meningioma process, I've come up with a short list of TEN THINGS MENINGIOMA SURVIVORS WANT YOU TO KNOW. Forgive me if I've posted these thoughts in the past. I know you all could add 50 more. Seems like we survivors just want to be heard and understood, yes?

TEN THINGS MENINGIOMA SURVIVORS WANT YOU TO KNOW:

1. THE SYMPTOMS I AM HAVING ARE MORE LIKELY THAN NOT RELATED TO MY MENINGIOMA, SOMEHOW AND IN SOME WAY. PLEASE DON’T DISCOUNT THEM OR SAY MY SYMPTOMS ARE UNRELATED TO THE TUMOR.
2. PLEASE DON’T MINIMIZE OR IGNORE MY SYMPTOMS BASED ON THE SIZE OF MY TUMOR, HOWEVER “SMALL.”
3. PLEASE DON’T COMPARE MY SYMPTOMS TO SOMEONE ELSE’S TUMOR SYMPTOMS. ALL SYMPTOMS SUCK.
4. DON’T TELL ME THAT “IF YOU’RE GOING TO GET A BRAIN TUMOR, THE MENINGIOMA IS THE ONE TO GET.” NO BRAIN TUMOR IS “THE ONE TO GET.” WHILE THIS COMMENT MAY SOFTEN THE BLOW OF DIAGNOSIS EVER SO SLIGHTLY, IT REALLY ISN'T A HUGE COMFORT.
5. TELL ME THE MENINGIOMA IS NON-MALIGNANT (IF IT IS), BUT PLEASE DON’T CALL IT BENIGN. IT IS ANYTHING BUT BENIGN. (Benign=kind, harmless.)
6. IF I COULD DO MORE, I WOULD. EVERYTHING TAKES MY BRAIN LONGER NOW AND TIRES ME QUICKER THAN BEFORE THE MENINGIOMA.
7. MY MENINGIOMA IS (OR WAS) INVISIBLE TO YOU, AND THE DAMAGE LEFT BEHIND FROM IT MAY BE INVISIBLE. SO PICTURE AN INVISIBLE BANDAGE AROUND MY HEAD. THOUGH I MAY SPEAK CLEARLY AND SOMETIMES SEEM LIKE EVERYONE ELSE, I STRUGGLE EVERYDAY WITH THE EFFECTS OF THE MENINGIOMA.
8. I KNOW YOU MEAN WELL, BUT TELLING ME YOU GET HEADACHES, TOO, OR FORGET THINGS, TOO, DOESN’T HELP ME FEEL JOINED IF YOU DON’T HAVE A BRAIN TUMOR, TOO. (IT'S KIND OF LIKE TELLING SOMEONE YOU UNDERSTAND HER MORNING SICKNESS WHEN YOU'VE NEVER BEEN PREGNANT.)
9. PLEASE DON’T EVER START A QUESTION TO ME WITH THE WORDS, “DON’T YOU REMEMBER….?” CHANCES ARE, THE MENINGIOMA HAS GIVEN ME BRAIN FOG AT THE LEAST, PLUS MEMORY IMPAIRMENT, AND A HOST OF OTHER REASONS WHY I CAN’T REMEMBER WHAT YOU THINK I WOULD REMEMBER.
10. PLEASE HELP ME EMBRACE THE “ME” I AM BECOMING AS I WALK THE JOURNEY OF HAVING A MENINGIOMA AND SURVIVING A MENINGIOMA. I NEED ALL THE HELP I CAN GET TO ADJUST TO THE CHANGES I AM EXPERIENCING. MY MENINGIOMA STORY KEEPS EVOLVING PAST THE DIAGNOSIS. NEW CHAPTERS SEEM TO APPPEAR EVERY DAY. THANK YOU FOR TRYING TO UNDERSTAND WITH ME THIS MYSTERY NOVEL CALLED “MENINGIOMA.”

Thank you, Nancy for putting it so well x

20 comments:

jacob diale said...

I wish they knew how it all sucks and I just turned 21..been diagnosed 3 years

Lesly Finn said...

So sorry its happened to you when so young. Good luck - you can beat it x

Unknown said...

Wow that was an awesome article! I am 53yrs old and it happen to me 1 1/2 years ago. The meningioma changed my life's routine tremendously. I am experiencing the exact same symptoms and I'm getting the same responset from my doctors and others. It's nice to know it's not all in my head

Anonymous said...

I was just diagnosed and I've been told many of the things that you listed. I have suffered from what I thought were sinus headaches for years. I was recently sent to a neurologist and my MRI revealed a small 4mm x 7mm meningeome. I e been told the tumor has nothing to do with my headaches. So glad I found your blog.

Theodore Ockels said...

Had a meningioma resection in Dec 2015. Things seem pretty normal in my life, though I now have some depression. Lots of new and sometimes strange thoughts, but my mental capacity seems improved - hard to know. Really hard to find anyone who interested in this subject, so good to find this blog.

Anonymous said...

I was diagnosed 18 months ago, 2 tumors one 22mm the other 40mm both were removed and now one has started to regrow , its hard managing both the physical and mental differences this has made, I ran marathons before the op I can now barely run for 10 minutes, this along with the inability to think as quickly or remember as much is hard when no one can ever see an illness

Unknown said...

So glad I found this blog I'm going through the same thing.., Very bad headaches.....some brain fog and numbness on left side with alittle depression plus I'm going through a separation with husband....so I'm glad people do understand what we are going through....

Janey said...

Thanks

Anonymous said...

Thanks

Anonymous said...

My husband just had surg this week, 2 days ago for 5cm meningioma, upper mid brain. We are to the throes of it. Lots to come I'm sure.

ani said...

I am always frustrated that my family expected me to be back to my old self, just because the doctors said it's not really in the brain but on the brain lining.

Unknown said...

My 1st meningioma was diagnosed in June of 2012. Last week I had a seizure only to find out my tumor had returned. I am seeing a neurosurgeon in 3 days. Have no idea what's going to happen. Since my first surgery life has been a little unpredictable. I am an Emergency Room RN and did go back to work only to find out I wasn't the same person. Everyone said how great I was doing but I knew. Things that came easy to me before all of a sudden didn't. I had to think about everything I did. After 2 years of mostly doing triage I took a position in Express Care. I still wander over to the acute side when they call a trauma code watching and wondering if I still had what it takes but I know I don't. That was one of the hardest things to accept as I was so passionate about my profession. Now my focus is once again on my tumor, how to "get rid of it" and the effects it will have on my brain. Asking for your prayers and positive thoughts. Marlena E

Theodore Ockels said...

Marlena - Thank you for posting and best wishes. Please post occasional follow ups with your news. I am retired, so it's not so clear cut if I have lost cognitive skills - but I do wonder about that(my resection was in Dec 2015). My balance has gone pretty bad, so have had to go on a safer route on my daily hike.

Rich H said...

Had a a large Meningionma in my frontal lobe removed in 2013 it is now 2017 and I have a Reoccurrence + another small tumor on my temple lobe . The Reoccurrence has entered my sinus and I sit in the hospital waiting to hear what is next. I’m scared and don’t know what is going to happen.

Rich H said...

Had a a large Meningionma in my frontal lobe removed in 2013 it is now 2017 and I have a Reoccurrence + another small tumor on my temple lobe . The Reoccurrence has entered my sinus and I sit in the hospital waiting to hear what is next. I’m scared and don’t know what is going to happen.

Rich H said...

I’m in the same boat

Lesly Finn said...

Rich H ... so sorry to hear that you are having to cope with this bad news. My thoughts are with you. Please let us know what the medics decide to do and Good Luck x

Lesly Finn said...

Anna ..please comment again ...your cooment yesterday was lost due to a glitch! Hope that you will visit and comment again xxxxx

Holly said...

I need support. I'm 3 weeks post surgery and not recovering quickly.

Holly said...

I'm 3 weeks post op complete removal. I'm not recovering quickly. Looking for others who have been here as well. I'm 47.