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

Sunday, 9 February 2014

Keep that pecker up!

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? .........