Sunday, 29 March 2009

Worry beads ......

What a strange situation! .... here I am looking, sounding and behaving exactly as I usually do (well, mostly) and yet I'm harbouring this little stranger! It's almost like being newly pregnant - who to tell and when? Will everything be all right? Plus the realisation that life will never be quite the same again.

Telling people

Who to tell is actually quite a difficult one. Of course it goes without saying that John and the children were the first to know, plus a very small circle of friends locally who knew I had been sent for a CT scan. Next we've told friends and relations in other parts of New Zealand and UK. But what to do about the 'wider circle' of friends and neighbours? I haven't managed to grapple with that one yet. When people I meet casually greet me with "Hallo, how are you?" they don't really expect, nor want, to hear "Not so good .... got this brain tumour."

It's just not done!

Another thing I've noticed about telling people is the tendency to 'play it down' .... I find myself saying "Luckily its non-malignant", "Luckily its only small", etc. Lucky? Why do I say that when it would be far luckier not to have it at all?

But I don't want to alarm or bore people, I suppose that's the truth of it. Which is one good reason for this blog - I can write down what 'alarms' ME and I don't have to worry about boring anyone!

I've read lots about meningiomas in the past two weeks, a small mountain of information, and I listened carefully to what the specialist had to say, but there are things that I cannot help thinking about.

The tumour
How long has it been there and how fast is it growing? Meningiomas are generally slow growing, possibly over many years, but they can suddenly speed up their growth and/or become more aggressive. A small percentage of meningiomas are malignant. Is mine?

Tumour site
Mine is in a difficult place to access surgically - but that's OK if they can zap it successfully with the Gamma knife. However, it lies adjacent to a critical area of the brain, the brain stem. Will any permanent damage be done, either through pressure from the tumour, or from the radiosurgery itself?

Brain stem tumours: "Morbidity is due to the location of the space-occupying lesion and compression of surrounding structures; because these structures regulate basic body functions of blood pressure, respiration, and swallowing as well as motor and sensory functions, compression can produce substantial neurological disability."
How do I know what symptoms are 'real' and due to the tumour? Sleep is getting harder to come by due to headache and nausea ... these are worse when lying down but also occur periodically throughout the day.
It seems to me that all this has got worse over the past couple of months. I have been started on Cyclizine but there is no sign of improvement yet after 4 days.

Recently I've been getting sudden bad pains in the top of my head centering on the left side above my eye. And yesterday evening I had a truly hideous headache in the same place that lasted around 2 hours and made my eyes water! I asked the specialist last week how come these pains weren't on the other side of my head to where the tumour is and he more or less shrugged and said that headaches from tumours are not easily explained! Apparently the brain itself does not 'feel' pain but the lining does ....

All my neurological signs were OK on examination so that's good. And I know enough to be aware should anything new appear, like numbness, difficulty balancing, etc. Luckily. And there's that word again!