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
Having a bit of a quiet day today after a hectic week with lots of bowls matches, involving several trips to town, and entertaining some very dear friends yesterday. Altogether an active and fun time! But a bit tiring just the same.
I have been thinking about what it takes to make the most of life. Well, for one thing it takes a bit of luck .... in that really nasty things do not keep falling in your lap, but the main thing is to "keep your pecker up", as my dear old grand-dad used to say!
Grand-dad Ernie Sparks was born in January, 1874 .... and that's one heck of a time ago! He died when I was eight but I remember him very well and looked forward to his occasional visits because he would play all sorts of silly games with me and spend time mending my dolls. I remember that I used to shy away from kissing him, even though I loved him dearly, because he had such a prickly moustache! Now I wonder whether this caused him some sadness. I do hope not.
Dear old Ernie had a lot on his plate and knew all about 'keeping ones pecker up'. Father of six girls he worked long and hard to keep the family going. At heart he was an inventor but he could never afford to keep his patents going for very long and eventually the financial difficulties of raising a large family on an erratic income became too much and he found permanent employment. This of course left little time for his inventions, although he always kept some little project on the go!
When I think about how hard things were for my grandparents it makes me very grateful to be living the life I am now. So then, what's a tumour or two if you can keep enjoying the people and activities you love? .........
Its that time of year again and I had my routine annual MRI last week to see what was happening with Feckit and Fuss, if anything. The results have left me a little confused ... well more so than usual anyway!! Prior to the scan I had a feeling that either Feckit or Fuss could be misbehaving themselves and it seems that I read the signs correctly (funny how one is able to pinpoint subtle changes in ones so-called "inexplicable" symptoms).
Last January (2013) little Fuss appeared to have increased in size from 9 x 9mm to 10 x 10mm. When I queried this I was told that such a small difference was probably because the picture "slices" taken during MRI can never be in exactly the same place every time. I have to say that this gave me pause for thought on the accuracy of the radiation beams during treatment with irradiation? Being fobbed off comes to mind!
Anyway, this January nasty old Fuss was reported as measuring 12 x 13mm. Now this seems to me to be quite a hefty bit of growth for one so little!! Especially when he is sitting in my head! But no-one else appears to be the least bit concerned and I was even told to wait and see what happens next year ..................
In other words just keep taking the tablets and stop making a Fuss about nothing!
A LETTER FROM YOUR BRAIN (Author: Thomas F. Quirk) (6-2011) Hello,
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh? Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y be patient and accepting of what I am now. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or angry, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best and I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die. I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that and be accepting of me if I am different. Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, Your Wounded Brain
I am truly grateful to have a loving (and lovely) family, good friends, a nice home and full mobility. But I would so love to be symptom free. Apart from being very depressing it all makes me feel sooooo tired!
I thought that I was on the upward trail a couple of weeks ago but WHAMMO its all back again this week, and the headache is a real bitch of one.
I think that I will have to try and get an appointment to see a neurologist again if things don't settle down.