LFIMemberspage

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 !!!!!

Sheer self-preservation led to me learning the tricks necessary to live in my new world. Don’t take anything for granted, what I see is only an approximation of the thing’s location; better to feel it with my fingers or move with caution. The swirling crowds exhaust me, stop somewhere safe and re-orient myself. Can’t turn my head quickly enough to see where everyone is so step back and let them all go through the door before me.

I had a long period of radiotherapy four months after the operation. Lots of people are OK with RT. I had already had radiotherapy twenty-odd years previously for breast cancer and I had not been OK. I wasn’t OK this time either. The Perspex mask was fairly horrible when it was put over my face and bolted to the table under the linear accelerator which beamed its particles through my empty socket and (not empty!) right brain. After three weeks I became very sick indeed and the lovely consultant oncologist gave me some steroids. How happy I was, how energised and sparkling -- how euphoric. The lovely consultant stopped the steroids and I was back to being sick and didn’t think him quite so lovely. 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

"Underneath my disfigured face I am a normal person and I have a tough time talking about it. I think the fact that we can not talk about it (facial disfigurement) often denies us the opportunity to be "normal". Just talking to another disfigured person has helped me a lot".

From: A friend of Let's Face It

Diana Whybrew, a member of Guise & Dolls group, affiliated to Let's Face It

" I consider myself lucky"

" I can't begin to describe the depths of despair you sink to," says Diana Whybrew, above.

Diana is a very special member of Let's Face It. On Saturday November 4th 2006 Diana allowed the Guardian newspaper to tell her story and print the above photograph, without wearing an eye pad, which is a very, very brave thing to do and we in Let's Face It are very proud of Diana indeed.

If you would like to make contact with Diana, you can do so by getting in touch with Let's Face It, either by telephone: 01843 833724, email: chrisletsfaceit@aol.com or letter addressed to Diana Whybrew, c/o Let's Face It, 72 Victoria avenue, Westgate on Sea, Kent CT8 8BH.

Dear Christine

I actually found out that the Basal Cell Carsinoma had not all been removed during my first operation in 2004 on the day we moved from Oxford to Wick in February 2007!

Since then I have had 2 further operations, one in Oxford and the exenteration at Moorfield's last July. I am just hoping that the histology is right this time and they have finally managed to get rid of it all.

After reading Elizabeth's letter I found it very emotive and brought all sorts of dormant feelings to the surface; so I ended full of mixed emotions. She has been through far more than I have, I was so lucky not to have to have RT, and the only graft was from the inside of my mouth, painful at the time (2nd major op, nearly 2 years ago) but almost forgotten now as I can eat and talk normally again. My socket is also healed over as my upper eyelid was unaffected and there was enough to pull down to meet the top of what was left of my cheek.

I was really impressed by Elizabeth's descriptions of how monocular vision really is; each one of the descriptions rang true for me, the jumping at shadows and tripping over the ground in particular. I couldn't have put it into words as well as she has, and now I know that it may feel like that for some time to come. But I still hope and expect that monocular vision will come to feel normal to me, I'm not quite there yet! Elizabeth was told it would take 12 months to adjust. I was told 3 months. Who knows how long it takes, and as Elizabeth says, what is adjustment? Adjustment doesn't mean that it will be back to how it was before, we all know that is never going to happen. What I do realize now is that everyone reacts and responds differently; and it's not necessarily a controllable, conscious thing.

It is good to have a counter balance, someone living their life with their friends and family, but acknowledging that everything is not rosy and definitely not easy.

Too often the people you are told about are those who have achieved at the highest level, you don't hear about those of us just doing normal jobs or living normal lives with what my husband describes as 'modifications'. That's where Let's Face It is so available.

I sometimes feel almost under more pressure to 'be fine' when asked at work, so I am reassuring everyone else, and not admitting that I might not be performing at my best or to the standard I previously achieved, since losing my eye. That said almost everyone has been very supportive, they seem pleased to have me back! Now it is up to me to decide if I let this 'modification' impact what I do, I do know it has made me more appreciative of my family and friends, so there is no doubt that my priorities will be different in the future.

from Liz

Dear Friends,

I am back in the Office full-time since Monday. I am very busy and trying to ‘unravel’ many things which were pending until my arrival.

I am still not 100% , as it would take up to two months for all scar tissues, which are inside of my cheeks, to subside. And I still cannot use any dye , or do anything with my hair!!! Going greyish, like a real ‘babushka’.

I attach a couple of latest pictures of my grandchildren.

Love Natasha

Let's Face It was recommended to me by a friend when I was diagnosed with a precancerous area just under my nose and which had spread into my lip. I knew surgery would be needed but after my appointment with the plastic surgeon, which was all of 3 minutes, I came out of the room shell shocked by what he had told me. I knew I wouldn't look the same but he gave me a picture of a future with a very deformed face.

Luckily I have friends and family to support me but I questioned that I was being a little alarmist about the procedure and the outcome. One of the mistakes that I made was trying to go it alone, and not take anyone with me to see the plastic surgeon. Still not sure of what was to happen as I had been given no time for questions at the appointment.

I found Let's Face It's website and sent an email. Christine rang me back directly and I had a long conversation with her which was so reassuring, put everything into perspective and meant that I was able to speak to someone who understood how I was feeling.

I am now at home having had my surgery and again Christine got in touch to see how I was. Although still swollen and full of stitches I will not look as bad as I first thought. I think things are really never as bad as we think once we get there.

My surgery was nothing compared to the terrible ordeals other people have to face but for me the thought of changing the way I looked was devastating. I can only thank Christine and the friend who put me in touch with Let's Face It for the wonderful support I received. Please make as many people as possible aware of the help on this website as we never know when we may be very glad of it.

From: Anon Let's Face It friend

If you would like to share your experiences with others in the Network, or have a story to tell, please do send it to us and we will put it on our website for you...