"Once more unto the breach, dear friends"

I decided it was high time I posted a bit more about the recovery since my operation, and those pesky nerve exercises I have to do to combat the somewhat inevitable damage caused by the removal of the tumour. 

I used that quote for the title because.... well, I look flat out ridiculous and I'm letting the entire internet see. 

I have four exercises, two in particular target the nerve branch which was damaged during surgery, which is the one which controls the right side of my bottom lip. They're actually really simple things, so it's a bit surprising and perplexing when you first find you can't do them any more. 

Firstly, let's go for the pair which have never been a problem, and are done purely to keep the rest of the nerve working while the affected part tries to recover. So, raising my eyebrows and screwing my eyes shut. 

(Informative selfies are acceptable selfies.... sort of.)

Thankfully I can still register instantaneous surprise or disgust at will and people actually understand what my face is trying to do. I do all of these ten to twelve times a day (preferably when I'm on my own!) and have to do this for a few more months yet. 

So, the remaining two which touch on the damaged part of the nerve. 

Number one: make like a hamster!

(I'm bringing sexy back.... er...)

This one makes a lot of sense to me. Blow air into your cheeks, see if your bottom lip will stay closed and allow you to hold the air in. I can do this pretty successfully now and it's almost symmetrical. For the first couple of weeks I couldn't do this very well at all and the failed attempts were very amusing for witnesses. My other half still hasn't stopped doing what we might call "less than flattering" impressions of said failed attempts. I have promised suitable retribution once fully recovered. 

The final exercise is the one which still isn't working, and in reality I still don't know whether it will improve. The guideline for facial nerve damage is that however the nerve behaves at six months post-surgery is likely to be as good as it will get. We're about six weeks out at this point, so there's plenty of time for this to improve. 

So, this is my attempt at baring my teeth at the moment:

("What a cute grin you have!".... said nobody ever.)

What I can't show in a photo is that there are small hopeful signs with this. If I hold that absolutely delightful expression, my bottom lip does start to twitch to my right. That's really good - it means the nerve is trying to move, and even if it's not managing it yet that's proof of residual sensation and motor function, so all in all it's very positive. And yes, I'm now typing just as fast as possible (I'm a secretary, so that's pretty damned fast) to get away from that photo. I look either really concerned or as if my lower lip is very specifically drunk. 

This damaged nerve does manifest in a general sense as well. Towards the end of a day, and particularly at the end of a working week I can feel the lip dragging and moving sluggishly. I keep mistakenly assuming I sound like I'm slurring my words - it turns out I'm not, but to me it feels like the sluggish lower lip is in the way of me speaking. It's a very strange sensation. This is usually accompanied by the scar area starting to stiffen and my jaw to seize a little - it's all normal and really just symptomatic of the fact I'm perpetually very tired at present. 

At six weeks post-surgery, whilst I'm doing really well from a medical perspective I'm intensely frustrated. My only prior experience of an operation under anaesthetic was an appendectomy when I was 12. After that, I felt pretty much back to normal within three weeks. My hope that this was because I was some sort of mutant healing wizard have gone sadly unanswered.

It was because I was 12, and as a child you bouce back from things like that with extraordinary resilience. It seems the adult body is just too damned grumpy to accept upheaval with the same carefree aplomb. 

In my own head (a kingdom of vastly unrealistic expectations and an at best tenuous grip on medical reality) I've returned to full time work so I expect to feel better. Whilst I do feel better than I did, I'm still very easily tired and do very little with my evenings. I have received more than one "Why don't you just ... y'know.... sit still?" from my GP in the course of check-ups. I think the poor man has resigned himself to the fact the only way I'll sit totally still and stop finding things that "need doing" is if he employs someone to give me a smart knock on the skull whenever I start being too active. 

(If I ever here "Meep meep!" anywhere near me I'm going to run like hell...

Image from coastalcapitalwealth.com)

The reality, however much I like or dislike it, is that it will be another few months until I'm fully right again. Slow and steady wins the race, and it's sensible not to push it too much.

My solution? 

Oh, hi Dragon Age: Origins. You recommend sitting still whilst playing the game, do you? 

Let's do this!

Let it never be said I won't sacrifice dignity for the sake of providing my readers with information and a bit of a laugh...

Wishing you all many spoons xxx

My kingdom for a hoverboard

(backtothefuture.wikia.com)

As we start 2015 TRB is nearly two, and rather a lot has happened in the last year! 

Recently I've been writing about something other than Fibromyalgia and Interstitial Cystitis, which was a bit of a surprise and not something I ever expected. Sitting down with a purpose for this blog when I set it up, I never thought to have to deal with (and thereby write about) health concerns which didn't touch on either of those conditions. Fate, as Bernard Cornwell's Merlin was wont to say in The Warlord Chronicles, is inexorable. 

It's the first of January, and I'm now two weeks post-surgery. I'm healing up surprisingly quickly (mad skills, clearly) and I'm looking at the week after next to hopefully return to work. This gives me another week to get over the lingering tiredness - I'm still sleeping a lot and I'm easily wiped out, although improving every day. 

I've been off the painkillers for a whole three days now too! That isn't to say the scar isn't still aching and painful, but it's at a level where I feel able to cope with it by myself. I wasn't expecting to get here so quickly if I'm honest, but I'm certainly not complaining. 

It's traditional to make resolutions at the turn of the new year to focus on in the coming months. These are usually concerned with self-improvement in one fashion or another. 

I don't usually make them, but then my late November and December don't usually involve close brushes with "life's too short" either, so my outlook is somewhat different this year. For a week and a half before Christmas I (and everyone around me) thought I had cancer. Looking back now with a benign diagnosis, it's difficult to put into words what an earth shattering concept that is to wrap the brain around. There's nothing to prepare you, and no getting away from it. I was very lucky indeed that, thanks to Joffrey being highly unusual (unique in fact), this turned out to not be so.  

So, this year I'm going to try and do more - including hopefully a welcome return to a former love. 

When I was 17 I gave up horse riding after ten years to learn to drive - money simply wouldn't stretch to everything. Just as I was getting ready to look into going back to it I started with the Fibromyalgia symptoms and therefore wrote it off as a bad job. 

However, in the last few months since moving into the Upside Down house, my health has been significantly better (Joffrey notwithstanding). Despite it being winter, the usual joint pain and stiffness has been noticeably less limiting than in previous years. It would appear (touch wood) that things are improving. With that in mind, I think it's time to give horse riding another go. I've found a nearby centre which looks very promising and have arranged to go for a visit tomorrow to see the horses and talk about the set up they have. I'm picky on several fronts with riding schools, and won't go just anywhere for the sake of price or convenience. 

Yes, there's the risk of falling and jarring my aforementioned grumpy joints, but here's where my sort-of resolution comes in. I think it's time I was more willing to attempt things, rather than holding back and going "Oh, but x, y and z might happen!" and therefore giving up before I've begun. 

(It's winter in the UK. That's excuse enough for me for a picture of a stunning horse running through snow. Image from rgbmag.com)

It was only when I went nosying on the website of the centre I'm visiting that I realised just how much I missed it. I love horses, they're unique and wonderful animals and spending time with them is incredibly rewarding. Also, if you'll permit me to blow my own trumpet for a moment, I was pretty good. I'd been at it for years and I worked hard to improve. It was a genuine skill, and I miss the comfort of the knowledge that there was a challenging sport I excelled in. As much as I'll be rusty at first, I'd love to get back to that level.

So, watch this space!

Continuing in this vein, I've agreed to let a friend take me to jive classes to try it out. This is likely to be hilarious for everyone except me. I've always liked the idea of being able to dance, but have been too shy to give dance classes a go up to press as I never had the typical classes as a little girl and see myself as largely uncoordinated and clumsy. However, in the spirit of "life's too short" I shall put myself to the hazard and risk some giggling for the sake of trying something new. 

Something far more subtle seems to have already begun before the new year, but I hope to keep it going and see where it takes me. There's been something of a shift in the way I look at myself and my body. 

As much as I can declaim at length about the fact our society is far too concerned with the concepts of beauty and perfection, I'm just as prone as everyone else to succumb from time to time in terms of fretting about this blemish or that weight gain or loss. I know it's silly, but bad days occur nonetheless. 

Since the surgery though, I've really felt a profound shift into thinking about the amazing things my body can do. We'll call Joffrey and Petunia blips - we all have those, right? - but blips aside, my body is incredible. I had invasive facial surgery two weeks ago, and I'm already up and about, the scar is healing incredibly neatly, I'm regaining the weight lost through stress and inability to eat properly and the severely damaged nerve controlling the right side of my lower lip is showing small signs of recovery already.

Think about that for a moment. That nerve was rather battered and bruised during the operation as it was wrapped around the tumour, so had to be peeled away. In my surgeon's words it looked "extremely sorry for itself" when they'd finished. Full recovery was considered unlikely, but my team were hopeful for some improvement over the next few months. In two weeks, it's already taking baby steps towards getting better! I'm guilty of a little bias since it's my nerve, but that surely deserves full marks for effort? The swift healing process thus far really has left me taken aback at what a brilliant machine the human body is. 

To further highlight how silly the preoccupation with how things look is, I've had several negative reactions from people whilst out and about when I've tied my hair up to get it out of the way, and thus revealed the scar on my neck. Initially I was incensed with this, but given how well the scar is healing it just further illustrates the lack of perspective involved. Rather than it being considered something ugly or disfiguring, to me with the knowledge of just how quickly and tidily it has healed it's something really impressive. It's a battle scar, and I'm proud of it. I'm proud of what my body has achieved in such a short space of time. 

Also, I smiled almost normally for the first time today. It appears this tired the nerve out completely as it's not really responded much since, but if that isn't evidence of how hard my body is working I don't know what is. 

(Me. Nearly there!)

So, a very Happy New Year to you all. I hope 2015 brings plenty of health and happiness. 

Oh, the title? That's not a resolution, more of a request. 

It's 2015. Where's my hoverboard? 

Do you have any New Year's resolutions concerning your health or anything else? I'd love to hear about them!

Wishing you all many spoons xxx

Uprising

They will not force us.

They will stop degrading us.

They will not control us.

We will be victorious.

Muse - Uprising

And victorious we were! Those following my escapades in hopsital recently will be happy to know the Purple Wedding Surgery went very well indeed. The kin- er, tumour is dead!

I've now been home from hospital ten days, and my stitches came out four days ago. When I went in for the stitches to be removed I received the best news ever in time for Christmas - Joffrey wasn't a cancer. Plenty of people jumped straight to the conclusion that my hospital mucked up, so I'm not going to beat about the bush in their defense. None of my clinical team had ever seen a benign tumour behave in the way mine did, so they would have been in very dodgy territory indeed to have assumed to leave it alone. As it is, the news is tremendous and the hospital now have my signature to keep Joffrey for research - I like to think they're going to poke him with sharp things many, many times. Serves him right. 

The healing process has been relatively uneventful. The scar itself is knitting very neatly and aside from one day when the pain level was tremendous (as in, waking up and pretty much screaming the house down level of pain) it's been nowhere near as unpleasant as I expected. I managed to drive a short way yesterday for the first time and have been out and about a couple of times. I still tire ridiculously easily however. 

(There you go. It's nowhere near as angry as I was expecting, and it looks neater every day.)

There are some other side effects - my body can't quite figure out balancing saliva levels at the moment. My throat is permanently dry, so I'm drinking water as if it's going out of fashion and that makes the level bounce. I'm constantly alternating between a dry throat and a runny nose. It is already better than it was thought and will only improve. 

There was some fairly hefty damage to the nerve controlling my lower lip on my right side. I've seom exercises to do, but at the moment it doesn't really work properly. However, that also will hopefully improve over the first six months (although according to my surgeon full recovery is unlikely). I can live with that!

Luckily, most of the scar will be under my hair anyway so you will be unable to tell, and from a distance the portion that is clearly visible already looks like just a fold in the skin. I really can't fault my surgeon at all, he's done an incredible job. 

I'm still mildly surprised by what a shock something like this is to random passers-by though. I threw my hair up to try a dress on in a shop yesterday and the look the changing room assistant gave me suggested I'd brandished the Dark Mark and commanded her subservience. I mean, I haven't done anything to that photo above - that's what it looks like. Surely that's not that offensive to look at is it?

I understand it's something a little unusual and unexpected, but I think some of the horror-struck reactions are far from reasonable. Maybe it's swearing at people when I'm not looking or something. 

I could be on my own in this (not that such a concept has ever bothered me over much) but I'm quite resolutely not hiding the changes to my appearance. For the first couple of days out of hospital I was a little shy about smiling and laughing, because that's when you can really tell the right side of my lower lip isn't moving at all, and the muscles and nerve grew tired after only a little talking and so the change was more noticeable. 

After this though I shook myself and decided to get on with it - I refuse to be embarrassed about it or feel the need to try and mask it in some way.

We already have an unhealthy relationship with the idea of perfection as a society, but I do think it's a little sad if this idea has grown so unchecked that people can't handle the sight of a scar, or a slightly altered facial expression. Spending a week and a half processing the idea that you have cancer (although thankfully not the case) is a sobering reminder that there are so very many more important things to be concerned with. 

So, another photo. This was taken the day my stitches came out and I found out I definitely did not have cancer. I should probably be grinning like a maniac, but I'm taking baby steps with the damaged nerve. Slow and steady wins the race. 

It's not a perfect face, but it's mine and I'm quite fond of it. 

(Crooked smiles and accompanying new dimples are very this season, I hear *snigger*)

Hoping you all had a lovely Christmas, and wishing everyone a very happy new year (and many spoons!) xxx