Dear Let's Face It Friends

In May 2005, I had an advanced basal cell carcinoma(BCC) excised from the upper right quadrant of my face.

This necessitated the removal of part of my scalp, half my forehead, my upper and lower eye lids and my eye.

This removal of the contents of the eye socket is called an exenteration and is an operation that is quite rare.

I was seen by the occular plastic surgeon at the regional Eye Hospital prior to having the area operated on at the regional Cancer Hospital. The eye surgeon was very hopeful that he would be able save my eye during the joint surgery at the Cancer Hospital and so I did not have any of the pre-op counselling and prosthetics advice that should usually be part of the preparation for this “anatomically and psychologically disfiguring operation”.

I was ill after the operation which had been a lengthy one. The plastic surgeons had repaired my scalp and forehead using part of my inner left wrist( a radial forearm flap) and this hand and wrist was in a half plaster cast and elevated in a sling, the wrist had been repaired, and the socket lined, with a split skin graft taken from my left upper outer thigh which was now covered with a charcoal dressing which was rather like a cricket pad tied to my leg.

Although I knew my eye was gone, I was in too much pain and stuffed with drugs to have any understanding of what this really meant: it was only when I went home ten days later that I began to find out.

The most shocking thing was that I no longer knew where anything was exactly. For fifty years I had lived in a world where I could trust the evidence of my own eyes and suddenly I no longer could. I found this both frightening and exasperating, it was like being shut in the fun house at the fair when everyone had gone home, except it wasn’t fun and I didn't like being alone in this distorted world. I stumbled around, unaware of when the ground under my feet shifted levels, found myself trapped in dead ends, flinched at shadows, fell down steps and over all the cracks that I hadn’t seen. I beat my fists on the walls. Let me out of here !!!!!

Eventually I came home, feeling more dead than alive and took to my bed. I didn't know that my symptoms were caused by my own reaction to RT to the brain. Only some people have these effects and my GP and the local hospital where he had me admitted didn't know what was happening to me. These effects disappear after some time without any intervention and by spring I was feeling able to start partaking of life again.

It was almost a full year after my radical surgery. Thanks in part to a trial at the Cancer Hospital of the use of honey in combating infection in wounds, my eye socket was slowly-very slowly-healing. I had steadfastly refused to look at my empty eye socket and my poor husband had washed it out every day and re-dressed it for me. I asked him to take a photo with the digital camera so he could print it at home. He put the photo on the kitchen notice board with a piece of paper pinned over it and I would quickly lift the paper and catch a glimpse of my photo whenever I felt up to it. By this means I was able to come to looking at myself fully and to start to clean and dress the eye socket myself. I still do this daily.

It will be four years this May since I had my exenteration. I have been told over and over during this time that people “adjust” to monocular vision but no-one has yet told me what is meant by “adjustment”. I am meant to have achieved “adjustment” sometime within the first year of eye loss. I don’t feel like I have adjusted to what has happened to me. Perhaps some advanced warning of what it was going to be like and some practical advice on coping with monocular vision before the operation would have helped, I didn't get either so I can’t say.

I have learned my own way of getting about in this monocular world, all the tricks I must always perform so that I don’t fall down stairs or get run over, or start screaming in the middle of the shopping arcade. Woe betide me though if I forget to figure out the best approach, because disaster will ensue; its not long ago that I was having a sit down and chat to a friend in a busy café. I was sitting across from her at a table for two and describing some incident to her with words and gestures. All of a sudden a toasted teacake flew through the air and landed, butter side down of course, on her ample bosom. Coming up on my blind side and covered by the general noise, the waitress had been about to pass the plate across to my friend when I had caught it with my gesticulating hand.

After a moment of stunned surprise we all laughed but it wouldn't have been funny if it had been a tray with a pot of scalding hot coffee on it. I feel resentful at having become a subdued person, at always having to take care and not act with an unthinking spontaneity. I annoy myself with always giving way to everyone else so that they don’t shove me off the train or push me stumbling through the revolving door. This is not a loss of confidence, it is adjustment. I really hate being adjusted sometimes.

I feel grief at the loss of part of my face, that part of me that was so familiar to me, that was me in-so-far as I and others saw me. I feel grief at the loss of the safe, familiar two-eyed world, I long to return to it. I don’t want to be an inhabitant of this other world.

Have I adjusted? Depends what you mean...

from Elizabeth

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