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.

Or rather, relinquishing it. I’ve gotten a bit tense the last few weeks (no shit, Sherlock!), but if there’s a time for going easy, for self-compassion, then that time is now.

We can’t control the NF2. It’s a bugger of a condition that does it’s own thing. We have no idea where the next tumour will grow, how big it will get, or what the repercussions will be. So we’ve accepted that. This certainly doesn’t mean that we’ve given in. Far from it. We’re both little fighters, hubby even more than me, and for those of who you know me well, you’ll know that this means that he’s one of a kind. He’s the bravest, most compassionate, generous, and witty man I know. And every day he inspires me, and countless others.

Even when told about the brain tumour needing to come out soonish, his first thought was for me and his family, about how we would cope. Now that the dust has settled a few weeks later, he’s still thinking more about others than himself. And that’s the mark of someone who’s been through hell, more than once – that far from reducing your ability to feel compassion, it enhances it.

Hubby wouldn’t be able to stop worrying about others first if he tried. Empathy just oozes out of him. He instinctively tries to protect others, and he’s forever worrying about my wellbeing. The first thing I see when I walk home from work late in the evening is his shadow at the front door – looking to check that I’m on my way. If not, he’ll start thinking that something bad has happened, even though I used to compete in Shotokan Karate and could easily pull someone’s ears off. In his words “I only have one beautiful wife, and I don’t want to lose her”.

And that’s what it all comes down to in the end – loss. Loss of control, loss of the people you care most about. The worst thing about meeting someone you feel a part of, is that you can’t comprehend them not being a part of you. Hubby and I became a part of each other on the first date, when yes, we talked marriage. You know when you know, especially when you’ve kissed as many frogs as I have! The bond we have is exceptionally strong. I know that. I only have to look at other people’s relationships to realise that we’re very fortunate to have found each other.

The love doesn’t make the pain of seeing someone suffer more bearable though. Far from it. I’m a sensitive soul at the best of times, so knowing what hubby is going through now affects me physically as well as emotionally. Which is why for once I’m taking a few steps back and being nice to myself. No more going hell for leather at the things that matter less. No more busting a gut for people who don’t have our best interests at heart. We’ll never be able to get this time back. We have one life. Best not waste it. Now is the time to embrace opportunities. To laugh lots, and most importantly, to love.

The text came through thirty minutes before I had to leave for work. “Unfortunately the cranial tumour has grown. I’ve been offered chemo or surgery. We’re to talk it through and get back to the doctors. Please don’t worry.”

I knew from the start that hubby had NF2. It was one of the many things that made him stand out – that despite a lifetime of hospitals, doctors, surgery, nerve damage, situations and outcomes that would make many crumble, he’s come through with his biting wit and outlook on life intact.

He humbles all who meet him, and then leaves then open mouthed with his tales of completing the Baja rally in Mexico with his dad – freaking the organisers out as they’d never before had a deaf team. Hubby and dad-in-law have learnt  that sometimes it’s best not to give advance notice about not being able to hear. That way they don’t get a ‘no’, and can enjoy surprising the wary.

His attitude to life has always been inspirational. Whenever I feel a bit down or find myself wanting to moan about silly things, I think about what he has to go through. It’s quite the reality check. He pretty much feels pain from some of the tumours constantly, especially those in his lower arm. He’s not able to close his eyes properly thanks to nerve damage, and has to keep bottles of artificial tears on standby. He’s completely deaf, but can pick up some sounds now thanks to the ABI brain stem implant, which comes in a selection of colours, and is useful for entertaining small children on long flights. His tongue and throat have been damaged, so speaking isn’t as easy as it is for most of us, and swallowing almost impossible without chugging the food down with lots of water. And without any cochlears he finds it difficult to balance, so often stumbles, or looks a bit pissed.

We look out for each other. Before he had a large tumour on his neck removed, and often used to get stared at by people who really ought to know better, I became the mistress of giving those people dirty looks. As someone who was once described by my sister as having “devil eyes”, not suprisingly this would do the trick.

Strangers often assume that I’m deaf too and try and sign to me or lip speak. I don’t always let them think otherwise, especially when it means that you get treated preferentially. Don’t berate me for this, you take what you can when you live with disability, trust me. It makes up for the times when you’re treated less well. When, like hubby, you’ve been bullied in a former job, knocked unconscious in the street because you accidentally bumped in to someone, or ignored because it’s easier than making an effort to communicate properly.

He’s my best friend and soulmate. As one friend quipped when I introduced her, “you’re perfect for each other, given that you were so shy at school that you always used to prefer lip speaking to talking out loud!” I’m not shy anymore. Life soon drills it out of you. And since meeting hubby I’ve become that much more assertive. He has too, and I take full credit for that 🙂 Together we’re stronger. Together we can get through this.

We’ve been described as ‘brave’ for the way we’ve approached the recent news, but in our eyes the alternative isn’t an alternative. We’re both warriors, even if we look a bit fluffy on the outside. Of course we’re scared shitless. You can’t help but worry. If the chemo doesn’t work within 3 months then he’ll have to have brain surgery regardless. The neurosurgeons can’t be sure which nerves the tumour is on until they get inside, and so can only give vague ideas of risks and outcomes. Feeding tubes have been mentioned again though. As has difficulty speaking. This won’t be a problem for me, I can almost read his mind and he mine, but it might make it difficult for others. Not that he’d object to having a Stephen Hawking speech synthesizer. Especially if it sounded like Steven Seagal.