Please don’t worry…

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.

 

4 Comments

  1. Anita

    Platitudes want to fall out of my mouth, because that’s what we are supposed to do. I mean them all, but they are of no assistance to you, I know that.
    You are both warriors.
    Fighting is what you do well. You’ve always been a feisty lil’ so and so Hayley Crawshaw – nee Dyer! Keep fighting, the alternative is no alternative – you say that yourself too. Just keep bloody well going and love every second of doing it. I am very proud to have you as my friend.

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