Saturday, August 30, 2014

Reaching out to other meningioma sufferers ............

This week I have been contacted by a meningioma sufferer who tells me that she knows of only ONE other in New Zealand personally. 

And up until now I have not heard of ANY because there is no official 'M' group in New Zealand. 

I am sure that there must be others with M's in Kiwiland and I am inviting them to make contact via my Facebook meningioma page. I have had this FB page going for some time as "Meningioma Living" .......but have now changed the title to "Meningioma Living in New Zealand" .... 

At least I now know that there are THREE of us!! - and I do hope others will make contact. In fact anyone with any kind of brain tumour is welcome!

Meningioma Living in New Zealand

Saturday, June 14, 2014

NO NEWS IS GOOD NEWS ....



Thought it was about time that I blogged something again about 'meningioma living', especially as this month is the 5 year anniversary of starting the radiosurgery treatment to Feckit. That expression 'meningioma living' makes me smile because I have a Facebook page of that name. Anyway its been a while since writing here so here we go! In actual fact there is not really anything newsworthy to write ... that is the trouble with having any kind of long term health problem, but NO NEWS IS GOOD NEWS as they say!

I am still here, and I am still much the same. Am on the same drug regime, which is proving pretty good at keeping the lighting pains in my ear and my left-sided Trigeminal Neuralgia at bay. In fact I am wondering whether or not to stop the tabs for a while and see what happens ... but I need just an ounce or two more courage to do that!

Generally the symptoms ARE (Are? Maybe? Well I think so) a little less bothersome, and I am certainly sleeping a lot better which is a WONDERFUL THING! Will just have to wait to see if this means that Feckit and Fuss are really starting to settle down and behave at long last!

It is absolutely ace to have two of my married daughters now living in New Zealand, and both living not too far away! And that means that we have 3 of our 4 grandchildren close by too! Life is good .....







Monday, March 24, 2014

Haiku


last night came lashing rain
scouring the streets with loud noise
- I lay warm in bed






Wednesday, February 26, 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, February 9, 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? .........

 

Thursday, January 23, 2014

Fuss about nothing?


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! 

Easy as.