Wednesday, 18 February 2015

Over-done or done-over!

Well I've seen the radiology-oncologist (RO) and also 'conversed' via telephone and text after a 'team meeting'.  The upshot of it all is that the measurements are STABLE (a good thing) and this whole exercise merely seems to prove how very hit or miss (even meaningless?) these measurements are (a bad thing) !!

RO said over the phone that the chief radiologist had 'looked back' and reviewed the films and that Fuss was currently 12mm and had not changed. However, having been told that it was 9mm in 2012, and at that point reportedly had not changed since seen on film in 2009,  I wondered which particular years had actually been reviewed.

Text messages followed:

Me:  Sorry to be a pain but it was the 2009 film?

RO:  No I think 2010.

Me:  First actual report 2012 but was on 2009 film. That is why I wanted to clarify.

RO:  We looked at the films. In any case no real change. It's good news.

RO is now definitely a bit huffy that I should continue to wonder why there should be a 3mm difference between the 2009/2012 measurement and the 2014/2015 measurement.

But "no real change" and "it's good news" ........ IN OTHER WORDS SHUT UP.

Wednesday, 4 February 2015

Not quite so done and dusted as I had thought ......

It seems from the MRI result that Fuss may have grown 3 or 4 millimetres since January 2013, according to my radio-oncologist. However, she does not seem concerned about it so this measurement may be of no significance ..............,

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


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 .....