Tuesday, 13 July 2010

Scar Eye and Droopy Lip

At the age of six I bounced too high off the bed, launching myself through the air and crashing down onto the sharp corner of the bedding box which sliced into my face.  I remember some discussion as to whether it should be stitched up but in the end my mother took the least bothersome option, slapped a plaster on it and gave me stewed rhubarb with sticky Fussell's milk on it as a treat.  Stitches might have prevented the half inch scar running down from the outer corner of my left eye but I was happy to escape the needlework and barely even noticed this facial blemish until...

Some years later my brother injured in a school fight, a fist smashing into his fulsome lips.  "Boys will be boys" my mother said but was less sanguine when even plastic surgery failed to neatly align the left-side of his upper lip.

A new game over tea where, in our usual sibling bickering way, ridicule starts up from each end of the kitchen table, "Scar-eye! Scar-eye!" my brother chants at me, "Droopy-lip! Droopy-lip!" I retaliate until my father, in annoyance, emerges from behind his tea-time book and clips us both round the head. "Quiet!!!!!!"  The game, however, continues in silence as  my brother lifts his hand to his eye and runs his forefinger down from it in tracery of my scar. In response, I draw mine across my upper lip curving down to encompass an exaggerated droop. My parents make no attempt to stop us, interested only in peace and quiet and not the possible psychological damage this cruelty might reap years later.

Years later and it is not the psychological damage that shapes our lives but the skin damage from a childhood when life was a beach and we knew no better than to burn on it.  Skin cancer runs in my family.  It  took my father, who paid for the years of outdoor living, exotic holidays and no thought of sun protection, with a multitude of skin lesions one of which inevitably became malignant.  My brother given a 50/50 chance of survival some years ago from a cancerous growth on his shoulder would appear to have landed on the right side of the fifty.  I already sport a small but unattractive scar on my arm where a basal cell carcinoma was cut out years ago and stitched up by a doctor  desperately in need of sewing lessons.

Routinely checking my skin for problems, I am worried to see a new and unusual rash on my shoulder and neck.  My doctor shares my worry - but not about the neck, I have also mentioned what I believe to be the least of my problems and that is the small cold sore I have on my upper lip that has been around on and off since I was diagnosed with ME fourteen years ago.  It has been more on than off recently and is failing to heal.   The doctor thinks this is a basal cell carcinoma and a visit to the skin clinic and biopsy confirms it.  Although it is not life threatening it will eventually spread in-situ and must be removed which will involve taking a wedge out of my lip.

Highly self-critical and aware that with the passing of each year any claim to attractiveness is  fading away, the only two things I have left that still retain a hint of prettiness are my dark, unruly hair and sweet, feminine, symmetrical lips.  They are my mother's lips and sometimes when I catch a passing glimpse of my face in a mirror I can see her expression and remember the many unkindnesses that fell from them. "I don't know who you think is going to look at you" she would say as I applied my teenage Biba make-up.  In moments when I am most like her, casual cruelties fall from my lips too. To be critical perhaps my mouth is a little too small.  It is about to get smaller.

We are covered under private health insurance, although that still means a two month wait for the services of a cosmetic surgeon.  Two months in which to ponder the possible things the surgeon has listed for me that might go wrong.  Infection, over-scarring, mismatching of the sides of the cut lip,  return of the basal cell carcinoma etc.  The consultant tries to reassure me that he has performed many of these operations but I am not reassured.  I am also worried about the possible repercussions that having a general anaesthetic might have on my ME.  I am left to mull over what might be the most distressing - having it done under local and being awake for an hour whilst part of my face is removed or the possibility that the body shock of a general anaesthetic will throw me back into a wheelchair for another few years.

Two months pass during which time I run the gamut of emotions from A to A -  Anger to Anxiety.  The Malvern Show, Chelsea, a week in Cephalonia all to an extent distract me from my misery and dread but at the same time I am constantly checking my lip in the mirror to see how much the previously almost unnoticeable carcinoma has grown.  And it is growing.  I start to obsess.. obviously.  I watch people on TV and imagine how their lips might look nip, tucked. I resist the temptation to photoshop an image of my lips into 'how they might look' after surgery.  I am angry with everyone, everything, because every year we have some new disaster dumped on us and I'm beginning to feel like Clarence Carter's 'Patches' "Some times life kicked him down to the ground, when he tried to get up - life would kick him back down!".  I want to scream that IT ISN'T FAIR as I have wanted to scream that most futile and clich├ęd of responses so many times for so many years.  Of course it isn't fair, no more so for me than for anyone else - why did anyone think it ever would be?

The day of my operation dawns and despite research into my possible reactions to general anaesthetic I can find no definite conclusions. I have decided that the best course of action is to discuss my needs (documented in my admission details) with the anaesthetist prior to the op.   I am in as a day patient in a room that has the equivalent charm of a Travelodge but is still so much more than what I might experience on the NHS.  Ben de Lisi's new designer patient gowns have yet to materialize here and I am clothed in a tie back, faded cotton tunic which is quite probably winceyette.  A procession of people are in and out of the room taking blood pressure, ECG, orders for post-op meal.  I dislike having my blood pressure taken - the tightness on my arm and the fact that unless you specifically ask no-one tells you what it is.  "Is it alright?" I ask the nurse.  "Yes, it is probably a bit higher than normal as you will be anxious" she surmises correctly.  I don't even bother to ask for the result of the ECG, already losing control of the situation and becoming the acquiescent dummy that they want.

The consultant who is about to splice my lip open turns up.  I have a natural distrust of doctors based on years of experience and I don't take to him either. For me knowledge is power but all the way through the process I have felt that everyone has done their level best to shy away from answering my direct, individual questions and to give me their general purpose stock answers, like call centre workers unable to deviate from the script.  He repeats much the same as he has said before, they will cut through my lip to make an excision, the swelling will take about two weeks to go down, it will feel tight in that area but will eventually loosen off in about two months, it will continue to settle down for a year, up to two years.  "You should avoid trying to talk too much for a few days after the operation - but I'm sure your husband won't mind that.  Ha ha ha!"  he tells me the stock joke he keeps up his sleeve to put his patients at their ease.  Boy, do I not laugh.  Actually I do force myself to raise a jolly little smile because that is clearly what is required at this masterpiece of hilarity - and the last thing I want is to alienate the man who is about to slash open my mouth.  No lifting or stooping either for a few days either.   He hasn't said don't drown your sorrows in a bottle of tequila though - so that is at least something.

Next in the procession is the man I have been waiting for - the anaesthetist.  Is he an anaesthetist or some would-be comedian firing out one-liners?  Is the purpose of these people to cheer and chivvy you into pre-op submission or to answer serious questions about the health implications of what they are doing?  I opt to believe the latter and ask him the questions that have been playing on my mind for the last two months. Given I have ME, which comes with a bundle of food and chemical intolerances, would I be better to have a full general anaesthetic or a local one with enough relaxants to get me through a distressing operation.  The 'rabbit in headlights' look comes into his eyes, one that all medical people seem to assume when they are asked a specific question.  "Obviously it is better if you only have a local" he says.  Had he read my notes he would have seen that this option has been ruled out. When I point out  that, given the location of the procedure,  the surgeon has suggested this might be too distressing for me he doesn't seem to know what op I am having.  I feel increasingly agitated.  I don't like to push the bit about me having ME too much as a lot of medical people still believe it is a purely psychological condition and the moment it is mentioned most of what I say will be dismissed as neurosis. Nevertheless, I need to ask him if he has had any experience of his patients with ME having a bad reaction to the anaesthetic.  "Not that I know of" he says "but then if it is something that is likely to be a delayed reaction to the anaesthetic then I wouldn't be likely to find out as I don't get feedback after the operation"  The Bedsock who is with me, and I are both somewhat gobsmacked by this comment.  I fight back the impulse to say "So as long as your patients survive until you are off shift that is all you are interested in?  And if they all die the following day then it really isn't your problem?"  Instead I just say that given the fact I have been extremely anxious about this operation (and now even more so) I will risk the general anaesthetic.  "Yes" he agrees "people with ME do seem to suffer a lot of anxiety" and  I know that he is another who thinks it is all in my head.

Now it is too late to worry, I am being wheeled off to theatre having said goodbye to the Bedsock and to my face as I have known it.  The anaesthetist has disappeared but his assistant, a cheerful Scouser who is the image of Bez from Happy Mondays (and Celebrity Big Brother) fame is busy filling up the syringes with the potent chemical mix that will knock me senseless.  I lose all hope.  Later when I tell the Bedsock this he says "well at least you knew the Scouser was in the theatre and not stealing the bag from your room" - a joke of such wickedness that despite the stitching in my lip I raise what is left of my smile.  A pretty Polish nurse holds my hand and I pour out my fears of being disfigured  "Don't worry you will just have a few stitches and you can tell people your husband hit you".  Even in my stressed state I feel that this advice is more than a little un-PC.

And then it is over, I am wheeled back to my room suffering multiple muscle spasms like a bodily St. Vitus dance which is quite frightening but passes off after a while.  The nurse tells me this happens occasionally after anaesthetic.  The Bedsock takes me home with a supply of straws as my mouth is stitched up like a cat's arse and I can't drink from a cup.  Food has to be shovelled in to one side of my mouth.  I have been pumped full of antibiotics and given a course of more pills to take - another huge worry for someone with ME.  I spend my time shovelling yoghurt into the side of my mouth.

Those of you who have stayed the course of this blog are probably wondering how does it look? I can't bring myself to study my face in detail but there is a tape covering the line of stitching from my lip up to my nose - I'm not sure why it needed to be cut so far up.  About half of one side of my upper lip has gone and in pinching what was left together it has pulled the philtrum between my lips and nose to one side.  After a week it looks a bit better or perhaps I have just got used to looking weird.  I am still drinking through straws - even the tequila cocktail the Bedsock made in an attempt to cheer me up.

Whether I will ever feel like going out in public again only time will tell.  I know the Bedsock will always love me no matter what I look like - but the question is will I be able to love myself?

22 comments:

Mac n' Janet said...

Great post, and you have my sympathy. I've had 7 skin cancers so far and I don't think it's a laughing matter either.

NewShoot said...

Dear wonderful cashmerey Arabella. You are so amazing - waiting for this, keeping it to yourself and still being able to entertain the rest of us with jolly pics and blogs.

May you heal swiftly and soon be able to smile freely at life again.

Ms B said...

Don't worry, I have the extra large paper bag ready; just need to cut out the eye holes!

Anonymous said...

It's done now thank God.
If you wanted to you could always talk to me - I do understand about personal operations and bloody cheerful anaethesists.
I think they all go on a course somewhere.
Rest and heal
Anonjan

Roland Paterson said...

My goodness, what an emotional post. Welling up here. Hope you begin to feel better and more positive before long. And it is all in the name of good health, which ultimately is far more important than vanity. But not easy to face up to. I have a little scar on my forehead from where Tim Calland hit my forehead instead of the water in the moat which he was aiming for....I know it's there, but many people don't. I hope your lip fixes the same way.
Maybe see you at Highgrove? We can ask Charlie to play 'spot the scar....'

Rachel said...

I am sorry to hear that you have been in the wars. Judging by this blog you have a lovely and charming personality which will shine out over and above any physical imperfection. However I am sure that with a little more healing time the sock will be fully mended.

Yan said...

You can never tell what a scar is going to look like till everything settles down, which doesn't happen immediately. It will eventually fade and be hardly noticeable to anyone,(apart from you), though I know that is of no comfort at the moment.

Keep up with the Tequila Cocktails!

Love,
Yan

The Black Fingernail said...

Wow!

I now have a new found level of sypathy with cats' arses.

BFN

Weeping Sore said...

We all have to grieve over losing our "looks" as we get older. Your situation however, is considerably more difficult for being sudden and very serious. I was glad for the long post to be reassured of your survival, despite the increasingly typical experience of competentl and compassionate medical care that is sometimes neither.

I think there is something important in what you didn't say. Apart from your anxiety over the procedure itself, you didn't apologize for your genuine concern about your appearance. It's part of the contradictory message many girls receive. While we were learning about how important good looks are, they were teaching us not to be shallow and vain.

Your thoughtful post provided a good example for me of how strong women survive the slings and arrows of outrageous fortune.

Denise said...

Oh, dear Sock, this is even worse than the garden disruption. Just pointed out a skin cancer on my man's shoulder, sent him to the doc, and demanded that the docs put him on yearly screenings since he's of the fair-skinned tribe (Irish in his case), but it's pulling teeth to get them to allow a screening schedule. Just distracting you with nonsense but want to let you know you have made me laugh, so I want you to hurt much, much less and very, very soon.

Arabella Sock said...

Thank you for your messages of sympathy and support they mean a lot to me. I normally try and avoid much overly personal stuff on my blog but as you might imagine this is all I have in my head right now.

No doubt I will get over this as I do with everything else - not because of any inner strength but because there actually isn't any choice but to do so.

Weeping Sock, what you say is interesting and part of the much bigger and ongoing debate about women and age. My belief (fuelled by experience) is that in the medical arena (as elsewhere) women over a certain age start to become invisible. Add to that the 'crime' of having ME and they might as well write 'Do not resuscitate' on your notes. I always try and dress up a bit when seeing these consultants etc. to make the point that I have some interest in my appearance but I am invariably left feeling that if I was some attractive young woman they might invest more time and effort in me.

Ultimately I believe being attractive relies less on looks than on having the confidence in yourself to project as an 'attractive' person. The Cache 22 for women bought up at the time I was is that the only social confidence you were likely to have built up would be based almost entirely on feedback about the way you looked rather than any personal achievement.

jro said...

I thought you seemed a bit down lately, now I can fuly understand why. I have an unsightly scar on my left arm, too. When the skin was stitched back together it ooked as if I had a small pillow sticking out of my arm, and it took a couple of years to calm down.

I feel for you with all my heart, because I have a mole that I must get investigated very soon, and it is on my eyelid. It brings a whole new meaning to being able to see in the dark.

Rob said...

You know we'd all still loves ya even if you were hideously deformed. God willing this always stays a minor issue. If not, at least you'll always have your wit...

Juliet said...

How lovely (not) to know there are p*ll*cks in private medicine as well as in the NHS. But even if the surgeon's sense of humour - like the anaesthetist's knowledge of ME - dates back to the 70s, he should at least know something about scars, so he's probably right about it settling down in time. The scar where I had a cyst removed has done - like J-Ro's it felt (I can't see it, it's on my back) huge for a while after the op. but I can't feel it at all now.

Sending many virtual hugs ((()))

Anonymous said...

AS - I can't empathise having never been in the same situation as you. I could sympathise but what use is sympathy from a stranger. What I can do is hope that you get through o.k. and in time can look back and smile. After all no-one can alter inner beauty.

Simon

lialeendertz said...

Oh Arabella! What a horrible ordeal to have gone through. I do hope the drugs havent set you back, but at least you know how to care for and nurture yourself well, possibly better than someone without ME would.
If this isnt a crass thing to say, I was really struck by your beauty when i met you, and it wasnt just the lips and the hair, or indeed the personality. You have extremely beautiful eyes, and are a very good looking woman indeed. No matter how you're feeling just now, I cant imagine this will change much.

patientgardener said...

I hope that writing this post has helped you sort out your feelings, I sometimes find that it does for me. I have a fear of anethestics which grows everytime I have one, the last time I had nightmares whilst under and woke up sobbing which rather perplexed the nurse. Having been through the ordeal of hospitals last year when I lost my sister I never want to go near one again so can understand your anxiety. I do think that anxiety is related to ME but not because I think it is in your head, I have seen how anxiety has affected by friend who has ME - I think ME is very stress related, certainly was in her case and I know she worries alot more about things these days. Still you are through the operation in one piece and I am sure you look as lovely as ever. Big hugs

Arabella Sock said...

Well I finally braved taking the plaster off that runs from my lip up to my nose. It looked surprisingly ordinary.. I was expecting a Herman Munster style scar. Possibly the cosmetic surgeon knew what he was doing *touches lots of wood*. Not sure about the lip though - it is going to have to stretch a lot to make up for the missing centimetre. We shall see - shame I can't sing or an Elvis impersonation would beckon.

Lia you can say lovely things to me any time, it isn't crass at all and it makes me feel happy. We visited some friends after Malvern and I was explaining about the blog saying that 'The Sock' wasn't really me but merely represented the vain, shallow, acquisitive side of my personality. "No" they said "that IS you!"

Simon - sympathy works to a small extent as it allows someone their grief which is important. Understanding is even better but the support I have had from people here in my comments works best of all. Thank you everyone.

Patientgarden, I have found writing and posting about this really quite cathartic in a way I didn't expect. It isn't the way I normally want to use this blog and I was scared it might frighten off my usual audience who, I'm sure, don't come here for a load of misery. But I remembered when you wrote about your grief over losing your sister I felt, in a way, privileged to read it. I was bought up to believe that I should always put on a 'good face' and not even share problems with my family but I think it belittles our achievements in life to pretend that everything is always hunky dory. This blog is 'The Sea of Immeasurable Gravy' and I guess this is just another thing that gets washed up on its shores.

Arabella Sock said...

A quick update on this. I saw the consultant last night and he is extremely impressed and proud of his handiwork! The cut from my nose down to my lip is already hardly visible although it will apparently go redder as it heals and then fade. He is also very happy with the progress of my lip which he says will loosen and stretch over time (sooner rather than later I hope as it feels rather unpleasant and I can't smile or shove food in that side of my mouth yet although I am training myself off the straws!).

The best news is that they have excised the entire cancer.

So I feel rather more cheerful about the whole thing and hopefully I won't be having to wear Ms B's kindly provided paper bag for too long.

Jro - better to get these things checked sooner rather than later. I hope it is OK.

Anne Wareham said...

I have just found this and like everyone else I am struck by your courage and full of sympathy for what you've been going through.

And I'm overwhelmed by the sheer number of things you raise here.

I'm struck, for example, by the number of things which are stigmatising (age, scars, fat,illness...) and how poor we are still as a society at confronting this. Naming the things and how they make us feel is, must be, a beginning.

I've always avoided acknowledging I've suffered (maybe still do - and there's another story) from ME. Stigma is real and it's hard enough to feel ill without also feeling like less than the sparkling, healthy, beautiful 18 year old that we're all supposed to be.

And hard to acknowledge, as you have, that that matters. We're all in our own cut off world of not feeling good enough and measuring ourselves against others in so many (failing) ways. Somehow we manage a lot of the time to believe other people are just above all that.

So going personal, as you have, is important and offers so much to the rest of us.

Some times I think I may work out how to live free of all this stuff one day before I'm dead, but think I'll not count on that...

Arabella Sock said...

Hi Anne

Your comment makes me glad that I wrote this post which I did with some trepidation. I knew some of the other bloggers had ME (or had had ME) but would never have thought it was someone as energetically feisty and creative as you. Like you I try and avoid mentioning the fact I have ME as I don't want to be defined by it. Perhaps our reticence does others a disservice.

As Meera Syal wrote 'Life isn't all ha ha hee hee' but I do try and keep my bloggywog as an escape from the bits that aren't.

HappyMouffetard said...

Arabella,
So glad to hear that:
(a) the operation was a success and the cancer removed;
(b) you are feeling happier
HM x