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

In the bleak midwinter

I hope you all had a lovely Christmas!

I have had a relatively quiet Christmas at home. My Dad kindly came to us to save both travelling and re-housing Dovakhitty for the holidays, and despite being low on spoons in the cold I managed to cook Christmas dinner predominantly by myself - and made Yorkshire puddings for the first time only to get them nigh on perfect.

Yes, I know. 24 and from Yorkshire, and that's the first time I've made them. You'd think they'd have thrown me over the border into Lancashire by now really.

Mostly I combatted being tired by doing everything in small stages and setting up as much as possible in advance so all I had to do at each time interval was put something already prepped into the oven. Never has a pseudo production line been so chaotic, but somehow it all worked and we can call my first Christmas dinner under my own steam pretty successful. I still wanted to fall asleep when I sat down to eat, but I'm one of those people who doesn't like sharing the kitchen space when I'm cooking - approach me whilst I'm armed with kitchen utensils at your very real peril!

We were essentially very British for the rest of the day - we drank lots of tea, watched Doctor Who (the less said about that the better) and sat up until very late by my standards setting the world to rights, all the while fending off our resident four legged mischief maker who had smelled the turkey and was determined to relieve us of it at all costs. I have definitely had too much tea and I am receiving just payment with my first IC flare up in a fair few months, but every now and again a little indulgence is good for the soul.

Boxing Day saw the traditional and much spoken of "bracing walk". My Dad hasn't actually seen much of York so we took him round the university campus which is an RSPB designated reserve. Having spent much of my childhood teaching me to identify all sorts of birds whilst we walked our German Shepherd in the nearby woodland every day, this was right up his street. We attempted to take a route along the river, only to find it had burst its banks in the recent storms. Welcome to York, Dad. 

(My very warm winter hat, which I certainly did not buy with the resemblance to Fievel's hat from An American Tail in mind. Don't be silly.) 

Working our way home via Museum Gardens and the famous Minster I started to suffer the sort of aching, stiffness and all over nauseating weakness my fellow Fibromyalgia sufferers will be familiar with. The thing I still haven't gotten quite used to yet is that because I walk at a decent pace and wrap up I don't feel cold - but that doesn't stop it being below freezing and Petunia taking note.

You see, when I moved up to York I failed to consider something fairly consequential in terms of my weather sensitive immune system, and that was the nature of the area in terms of weather tendencies. Native of Sheffield which benefits from the protective barrier of the Pennine hills, it's something of a logical fallacy that I moved further north to the very bottom of the Vale of York - as it turns out, a notorious cold spot. If there was a prize for accidental poor judgement, I'd be sweeping the board. 

So tonight I have done very little except watch the new Nightwish DVD (serious girlfriend points accrued by me in the present buying department!) and have a long soak complete with my body temperature's version of what my driving instructor used to call "kangaroo petrol". I'm back at work tomorrow so I think I will need something of a quiet weekend to recover, but it's been nice to have my small cookery triumph and to get outside in our beautiful city, even if it was very cold and as far as I can tell has wreaked some havoc on my joints and left me to quietly sit out the weakness in my legs.  

All things considered though I'm not upset with the inevitable bodily reaction. I've had a lovely couple of days and it was really lovely to have my Dad with us. In spite of everything there has been much laughter and good cheer, and that's what Christmas is really all about. We've just managed to get in touch over Skype with Alex's family in Australia before bed too, which was an added treat.

Also, I'm sure some readers will agree that there is something to be laughed at when your Fibromyalgia-riddled hands and wrists make it even more tricky than normal to unwrap presents. If anyone had witnessed my Mum's wrapping skills, they would understand the "more than normal" reference. Having witnessed it on several occasions, I remain pretty convinced she wraps presents with the sole mission in mind of it taking you until the following Christmas to work you way in!

Regular readers will have no doubt noticed a tendency towards references of the geeky persuasion throughout the blog. Alex gave me a canvas Westeros map for Christmas.

I tell you all this as fair warning that I will lay much of the blame with him for leading me astray and encouraging me to stay there.

(Yorkshire, God's own county. And some other bits nobody cares about.)

Whether your celebrations at this time of year are indeed to mark Christmas or any other festival or holiday, I wish everyone the gift of as good health as possible with which to enjoy the festivities, and I shall be back on New Year's Eve with my thoughts on looking forward into the next year of my chronic illness story.

Wishing you all many spoons xxx