Wednesday, 21 January 2015

MRI ... all done and dusted for another year!

Feckit (2.4 cm)


Fuss (1.28 cm)



Had my annual check MRI on January 6th, but did not get the results until yesterday as my consultant was away on vacation. Those two weeks of waiting seemed like an eternity!

I was beginning to worry that feeling bad lately meant BIG things were happening in there and that Feckit and Fuss were having a fight!!!! Anyway, there is no real change so that is GOOD NEWS, even though Fuss seems to be growing at around 1mm per year! This is about the average growth rate for a non-malignant meningioma.

I have been told that I will have another check MRI next January .... no trying to fob me off with bi-annual ones this time! Good news all round then.






Sunday, 28 December 2014

It's that time of year!


Christmas has been and gone and the New Year is looming. Yet another year of my life has passed, ... and it just doesn't seem possible! ALL RIGHT - I know everyone says it but I'm not apologising for saying it as well - it just does not seem possible.  That's me ... old and boring and bad-tempered!

Well so be it. I suppose that is what happens when you reach a certain stage in life. You get left behind and start becoming superfluous. And it makes you sad. And bad. And tired.

I have to say that on the whole it had been quite a good year until recently when I started to feel quite ill again. Maybe it is nothing ......... just imagination? depression? the drugs? the weather? who knows? .... but I could quite happily curl up somewhere snug and quiet to hibernate. Indefinitely.

But wait up! I have my check MRI to look forward to next week. Maybe things will improve after that ........ they could. Couldn't they?

Saturday, 30 August 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, 14 June 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, 24 March 2014

Haiku


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






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