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

Screw your courage to the sticking-place

("Positively primeval." Image from fanpop.com)

An aside: the title is part of a speech from Lady Macbeth – it also turns up in Disney’s Beauty and the Beast in the song “Kill the Beast”. There you go, a completely irrelevant fact for you. You can't say I never tell you anything interesting (read "useless").

Courage and bravery are ideas I often see discussed and opined upon in the realm of chronic ill health. A few people have kindly told me they think the writing of this blog is brave, not only in openness about grim details on occasion but also in being willing to tackle difficult subjects, from time to time taking the road less traveled by in terms of approach to them.

It’s a concept I find horrendously awkward.

I don’t see myself as a particularly brave person by nature. I’m just a bit too quiet and mild-mannered for that, and for a practical example no matter what anyone tells me about “facing up to your fears” nothing under the sky would compel me to get close to large spiders. I’m not an unusual individual in character really and in writing this blog I’m not creating the textual equivalent of rolling high fortitude saves against life.   

In discussing this idea recently I countermanded it with the fact that I’m not always open about my health. There are plenty of occasions where I don’t talk about it when I perhaps should, times when I’ll smile and say everything’s fine when I actively want to scream, and rarer occasions where I’m faced with ignorance and I simply don’t have the energy to match it.

There’s problem number one – the idea that to be brave, you have to be the same all the time.

The second issue is the idea many are conditioned towards that bravery manifests in one set way. It’s bold and makes itself heard; it batters down any and all doors closed against the cause it champions. It never, ever pauses or falters.

In this guise therefore it is essentially a somewhat inhuman characteristic.

Within the sphere of chronic illness there are plenty of examples of different forms of bravery. It doesn’t have to be flashy or worthy of recognition and it could be entirely personal and appreciated by an audience of one.

Making it out of bed for the first time in a week after a flare up, facing numerous and sometimes fruitless hospital procedures, speaking about your health to someone new, agreeing to a trial a new medication – they’re all courageous acts in their own way. They might not gain the recognition they deserve for being so, but that makes it no less true.

(Poignant. Image from spirituallythinking.blogspot.com)

The one characteristic of mine that I would allow is possibly a brave one is that I've never very often been afflicted by the need to belong to a group, and so I've always had the ability to stand aside from behaviours or ideas I believe to be morally wrong despite of what anyone might think of me because of this failure to conform. This I think has manifested in a tendency for some posts on this blog to be a little apart from the norm of what a reader would maybe expect from a blog about illness. 

I’m not here to tar all healthy people with the brush of ignorance, and I’m not writing from the position of believing all sufferers of chronic ill health behave impeccably and are always right in what they do and say. That would be an easy enough path to travel down, but it’s not the one for me.

I didn't start the blog because I thought it would be a brave thing to do – I started it because I thought I could help. I wanted to show the reality behind all the romanticised or conversely demonised notions about chronic illness and those who suffer with it. I hoped to show that it was normal to struggle and to have bad days, just as it was normal to have better ones.

In summary then I’m going to offer an unpopular idea about the concept of bravery within the realm of illness, because I don’t believe that the loud and brash archetype of courage is the correct yardstick to apply.

Perhaps courage lies in making peace with the situation; accepting that good days, bad days and everything in between are a part of being human.

Maybe the greatest bravery of all is in accepting that you can’t always win, and that in not winning it’s fine to pull off the Boots of Anti-Ignorance (+5 these days, because +3 wasn't quite enough!), hang up the Helm of Brave Face* and live to fight another day.

*In case you wondered, no, it’s unlikely I’ll run out of Dungeons and Dragons references any time soon. 

Whilst I’m talking about recognition, I’m incredibly honoured to say that The Retired Bridgeburner has been nominated in the WEGO Health Acitivist Awards! Nomination are to my knowledge still open and you can find out about the categories and when voting will begin on the link  here.

Wishing you all many spoons xxx