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 clichéd 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?
We have spent the weekend shovelling the rubble-filled top layer of the small borders into my new purple and green plastic trugs and transporting it through the house to fill the already mountainous skip, returning back with trugs filled with new lovely compost, half a ton of Premium Blend from Brighton's Compost Co-op. Astonishing how such a small growing space has absorbed so much compost.
The plants which were removed from the borders months ago have been languishing in pots and watering them in this dry, hot, period has been a huge task in itself. Happily the 'Matthew Wilson' caryopteris* has survived and is now back in position, one of the surviving 'Cleve West' lupins is now thrusting up a flowering spike. It has come true to colour from the seeds I harvested from my original Lupinus Masterpiece two years ago. Out of the original Cleve West babies**, five have survived in pots but look a bit mildewed and one is now living up a mountain in France where it is about to reveal its true (or not true) colours. Fascinating though the Cleve West lupin experience has been, they have honestly been more trouble than they are worth and if they don't flower this year they are off to the dump. Two heucheras have made it through - they are happy but I am less so. The pretty peach flambé 'd colours of spring are scorched, their bleached, faded and crispy leaves like old-lady knickers washed in with a red sock. 
