Monday 27 June 2016

On having a brain tumour.....

I'm going to tell you about it; to raise awareness for what is a relatively rare occurrence, and also to explain why it may be many months before I close the book on this.

I had a brain tumour called an Acoustic Neuroma. In the best tradition of medical things, it is also called a Vestibular Schwannoma. 
In the first place, it grows out of the auditory nerve and so fills your ear tubes and makes you gradually deaf. As it grows, so it takes up any space available and often wraps around or grows onto the facial nerve. This makes everything 'novocaine' numb on one side of the face. It hurts eventually, the numbness, just because there's no relief, and it makes you chew your tongue and bite your cheek far too often! Once it's taken on the facial nerve, the only place for it to grow is in any space between the brain and the skull, so it does; and eventually, starts to exert backward pressure on the brain as it makes room for itself. It is ultimately life threatening, but benign. My symptoms progressed over the time I was on the waiting list, but I was so lucky never to experience any pain.

My face and head were numb on my right. I couldn't hear a thing (failing hearing and tingling in my gums drove me to the doctor originally). My walk and balance were awful, but I never fell over. Jan will tell you there were a few times when I would have if she hadn't, as always, been there for me! I walked Mr Dunnit into several hedges, and more than once was accused of drunkeness. Particularly as I was slurring my words like a good 'un! Sometimes, I would let it go because I understand how difficult it is not to judge. Other times, when I was feeling particularly defensive, I would put them right as calmly and clearly as I could. We called it 'dropping the tumour bomb' and only once in the last six months did it elicit an apology from the accuser. Mostly I felt awkward for embarrassing them and would leave immediately. Interesting human beans, aren't we!
a semi-decoy pic; proof that Mr Dunnit really looked after me well

Every medical professional I've met in the last eight months has been superb. They treated it at just the right level for me; urgent enough to put me on a list for surgery, take it very seriously but not scare me, monitor everything until my turn came. And when it did come, treating it as a perfectly routine operation. I should point out that surgery is not always the only treatment, but such was my case. It was a six month long list. I have to say that it's been a long wait. I was so tired by the effort of walking and talking like a drunk, trying to hear in difficult situations, feeling tired ALL of the time and just generally waiting. 

I had a scare in April when my handwriting disappeared....I couldn't write any better than a five year old and that really did distress me; I'm often complimented on my handwriting style and its a greater part of my self identity than I thought. Hubris. I had another scan and they decided that it had grown faster than average. I had just come up to the top of the waiting list, so surgery on 31 May it was.

With permission, we buzzed off to Spain for a week beforehand. It was a great idea to be elsewhere and distracted by non routine things for that last week of waiting. I did not have any pain at all in terms of air pressure and I continue to thank my lucky stars that I haven't really suffered as a result of the tumour. I joined an online support group and it quickly became obvious that I was in the minority when it came to pain and tinnitus. (BANA - British Acoustic Neuroma Association).

The operation took nearly eight hours. I have a U shaped scar, a U on its side, starting level with and behind my earlobe and going round to a finish just behind the top of my ear. I had my hair cut really short while we were in Spain and so the shaved area on my head doesn't really have the impact I think it would have had. 

In the long term, I have work to do; balance exercises. I have to train my brain to accept that it needs to work out what is level balance from one side only. Because of my earlier deafness and imbalance, I had a bit of a head start on that and moving my head wasn't too awful an experience the next day. I gather that for others, the nausea and vertigo can go on for days. Awful. For a few days I took anti-nausea pills, but not for long, the hospital want you to train your brain rather than be treated, so brain training it is! I felt really rough, as you would expect, and very sore. I came home after five days and then spent a week sleeping and hurting. After that, by degrees, things have improved and I'm doing OK. I'm still sleeping, but mostly at night and well into the morning, rather than napping constantly. My balance is good, I can shake my head without losing control of my whereabouts, so the brain is obviously and miraculously learning to adjust.

I am irrevocably deaf on the right and I have palsy on the right of my face. I can't operate my right eye lid enough to close my eye, I have drops and I swear, the purest axle grease type ointment that saves my poor eye hurting from being so dry. In the ultimate 'come hither' look, I tape my eye shut to sleep. Like a lot of things, until you can't, you don't realise how clever and necessary blinking and eye control is! I am drinking everything through a straw, my lips won't 'seal' to prevent dribbling, and actually, eating certain foods is erm, messy. I have facial physio and balance physio slated. I cannot fault my treatment, the hospital, facilities and particularly the care from the staff. 

The ENT and Brain guys say it will be 3 months before I'm post op enough to think about getting back to a routine of more than light housework and such. This is worst case, I'm already doing more than I expected to be able to - all in short bursts, but still, it's progress. 

The facial palsy people say that what I get back in the first three months will be pretty much how it will be for me. Over all, they all say to allow 18 months for the new normal to embed. It is all a challenge - who wouldn't hate this palsy, especially. But Mr Dunnit says he's staying anyway, my friends are still my friends and now I have physical evidence of illness, even strangers are being kind.  So, I'll be bringing on the new normal. First, a nap.

Wednesday 22 June 2016

WOYWW 368...Feeling humble


 *taps screen*, gawd, you could write your name in the dust. Ahem. 

I'm going to do occasional posts, you've been so kind and understanding over my absence that I figure you won't mind me easing myself back this way. I have a limited 'screen time' because one of my eyes is poorly. For now, WOYWW will stay at LLJs because I'm not sure if I'm ready for any sort of commitment!

I need to say an inadequate and humble thank you, and I can't wait any longer. You're all wonderful examples of support and friendship and I really am appreciative. At four in the morning as I struggled to sit upright so I could suck water through a bloody straw to swallow painkillers, and still spill most of the water down my front, it really was helpful to know that if we were chatting, you'd wish me well. Sometimes I tried to work out who would be awake in the deep of my night.

It was really important to me. Thank you.

So my desk this week is actually a view of the Get Well cards that have been so generous and thoughtfully given and believe me, humbly and often tearfully received. Back soon!

Wednesday 1 June 2016

What's On Your Workdesk Wednesday 365

Today is the day after my big ol' surgery. So I'm not here! Please link via Jan as you have previously done!