The strangest thing…

It’s always the case isn’t it? You try desperately not to cry in front of people, to give the impression that you’re holding it all together nicely, and then someone says the strangest thing and sets you off.

I’ve been seeing a Bowen Therapist for a little while as recent stresses seem to have exacerbated the EDS. Certain parts of my body have decided to go into ‘lockdown’, leaving others to over-compensate, and a back in spasm is a tad painful. Yesterday, whilst working on my lower legs she quietly said “your feet are really fed up”, and the waterworks started. No wails or snuffling, just tears.

Whilst the fact that I’d started to cry over such a statement shocked me, it didn’t her, and I’m sure that it wouldn’t surprise quite a few other people too. I’m an emotional person at the best of times. I can quite easily feel other people’s pain, empathy comes naturally, and I will always worry about others. But I’ve yet to really cry about hubby’s latest diagnosis. And I’m  not sure why. Maybe it’s because we both know that there could be some very tough times ahead and we’re conserving our emotional energy. Or maybe it’s because we’ve grown even stronger these last few years. Whilst we may look fluffy on the outside, we’re steely warriors within.

The funding application for hubby’s chemo has now been submitted by the lead hospital so we’re waiting for a date for baseline tests to start. On the plus side this means that we can enjoy our little holiday in deepest darkest mid-Wales without having to contend with any medication side effects.

Whilst the brain tumour is big enough to be causing concern, as far as we know without getting in there, it’s not cancerous – NF2 tumours are usually benign, and so we’re not fighting against the clock quite so hard. But it has grown significantly in the last year, is compressing his brain, and has to come out.

That’s one of the problems when you start talking about NF2. Because it’s so rare, very few people have heard of it let alone know anything about it, and automatically assume that because you’re dealing with tumours that it must be cancer. I’m sure people think they’re being helpful by telling us about miracle cancer cures they’ve read about in the tabloids, but they’re really not. What would be more appreciated is if they actually spent a few minutes researching the condition – Neurofibromatosis type 2. Only about one thousand people in the UK have been diagnosed with it, and hubby has been a research subject since he was a child. There’s a lot of bull about it on the interweb of course, and yes some articles will talk about the Elephant Man even though the general consensus is now that he had Proteus Syndrome rather than NF2. I’ve listed the most helpful websites at the bottom of this post.

So all in all we’re doing ok. We’re keeping busy at work and play. We’re talking lots about the future, and we’re giving each other lots of cuddles. Alongside lots of laughs, cwtches (a special sort of cuddle, named by the Welsh) really are the best medicine.

Click to visit Neuro Foundation UK, and Can You Hear Us.

2 Comments

  1. jenny

    Hayley – so much to learn from your post. Can you give your feet some love too, they are taking those brave steps forwards and keeping you so beautifully grounded through your NF2 warrior’s journey. Much love to you both x

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