Mid 2007
Eye pain was becoming unbearable, I was struggling to do things that I took for granted due to pain and photophobia (dislike of light). I couldn’t read for more than 10 minutes or so, I struggled in daylight if I didn’t have my shades on, I couldn’t watch Tv, sit at pc, even look at someone whilst talking to them. That was extremely difficult as I am very much an eye contact person. This was taking over my life and I began to withdraw from society and my family. It was like a darkness was overshadowing me and eating me up. Taking away my confidence piece by piece. The eye was becoming more and more noticeable and odd looking. Small, different colour, lid closing as if the final curtain was coming down.
The strain on my good eye was now apparent.
I was struggling terribly at work on a busy orthopaedic ward, lots of bright lights, and computer work, the pain hindering me and slowing me down, thus relying on my colleagues to carry me when I couldn’t keep up.
A new Deb was forming, a quiet, withdrawn, unhappy Deb, constantly in pain. A million miles from the bright, bubbly, outgoing, sparkly Deb everyone once knew, and people were beginning to notice and comment. I couldn’t deal with this any longer. My frequent visits to A&E dept at eye infirmary weren’t helping. They were running out of options to treat me. Painkillers, 2 lots of drops, the odd anaesthetic drop so I could get a few moments totally pain free……What else was left?
October 2007
I was referred back to my consultant for a chat and discuss ‘other options’
Even though the words eye removal had been thrown about previously I could never imagine it ever coming a reality, but it did.
My consultant, Mr Featherstone had a good look, and ummed and aahed for a while, sat back in his chair and gave me that sympathetic look, I know that look well, I’m a nurse!
Bad news was coming and I felt uncomfortable, not wanting to look at him or listen to what he was going to say.
And I was alone.
‘Well, I think you have come to the end of the road’
No, still not wanting to listen.
‘I’m afraid there is no more we can do, its only going to get worse’
Ha as if it can get any worse??
‘Only option now is to have it taken out’
NNNoooooooooooo, please no!!
Then it came …..the prickling eyes, the wobbling chin…..’But, but I’m getting married next August!!’
‘I’m sure we can sort you out before then’
Looking back he was very sympathetic and explained how he would refer me to his colleague for a chat and also a specialist nurse. But I didn’t take much of it in.
I talked all this over with my fiancé Shaun and he said ‘It will be fine, we will cope.
‘Really??’
I had also applied for, and was successful in acquiring a new job. Infection Control Nurse in the Community, I was thrilled but a cloud was hanging over me.
I was at work a few days later on the ward, still in shock I suppose, maybe denial. I got a call from a nurse called Carol Wetherstone, specialist nurse. This woman was to become my rock and my friend I just didn’t know it yet.
A few days later I was sitting in her office…..again alone, and I remember her looking surprised at that, which set me wondering why? Is this going to be bad?
We chatted and I gave my story and then we discussed ‘The journey’ as I call it.
I couldn’t stop the tears, I felt my heart was going to break, this is so wrong and not happening. The hardest part was being told I would have no eye for 6 to 8 weeks!!! Oh My God, this was horrific, I totally broke down and could not take it in. I’m going to look like a freak!!
I was shown the plastic conformer that would sit under my lids to keep eye open and hold the shape. A clear plastic thing that would not hide anything.
She then went on to show me a prosthetic eye, but No I couldn’t, No way this was too much to bear.
I left broken hearted and sat in my car and sobbed, how the hell am I going to do this?
I went straight to my mum as every girl does and cried and cried, and cried more when my dad came home, we all cried.
I’m going to lose my eye!!
I then told Shaun and again he appeared supportive, but not really knowing what to say or do, apart from you will be fine and its for the best and I’ll be here for you, I love you no matter what!
December 20th
My appointment with Mr Rob Boyce Opthalmic surgeon. Now my hero, but then ‘the guy who was going to rob me of my eye!’.
He was lovely and extremely empathetic, continuously attempting to instill confidence in me, I was so scared but knew I was doing the right thing.
This time I was not alone, I had my dad. My big, strong dad that wont let anyone hurt his little girl (well almost 40yrs old little girl). He will look after me and he did. All he did was look at me and his eyes said it all
‘You’re going to be alright!’
You may think it strange, then again, maybe not, that my fiancé was never with me on any of these appointments, well you may indeed think…………..
The following weeks were a blur really, Mr Boyce said he would try to admit me at end of January for surgery as I had decided to go to a private ocularist, Robin Brammer, whom was known to Mr Boyce.
Robin was based in Manchester but opening a clinic in Durham, therefore we wanted my appointments to coincide with Durham clinic so as not to have to travel.
I had seen some NHS made eyes and I wasn’t having one. They were good but not as good as I wanted. If I was going through this i wanted the best .
I discussed this option with Shaun and he immediately said ‘You’re having a private eye (excuse the pun!), no question about cost!’ which was £1200..
As well as all this hanging over me I had the added worry of telling my new employers. I had a start date Jan 7th, my op date came through as Feb 5th!! Not the greatest of starts!
But I wasn’t to worry, they were fab, very supportive.
So now all I had to do was wait for the day.
I started my new job and coped as best I could, it was a much better environment than last job, but becoming increasingly difficult, lights, pc screens, reading and then the biggee……..
I was out on a call one day to Gateshead, alone. The pain was bad that day and I was coming back to base. The sun was low and very bright. I had to drive along a stretch of the A1m, which is a very busy road.
I nearly crashed ……twice, I was terrified.
I pulled into the car park at work and sobbed, now I was a danger on the road, this has totally taken my life!
I then went on sick leave, a week prior to my surgery, I was beat!!
Pre op counselling
I visited Carol, as I was lost and didn’t know who to talk to, she let me go see her straight away, thank God as I thought I would just break down, I felt so low.
She was wonderful and totally understood. She didn’t ever make a big deal out of my difficulties and worries. It was actually as if she expected it and was totally prepared.
She put me in touch with a young girl that had had this surgery a year back – Leanne, and we arranged to meet.
Leanne was amazing, I was so taken aback by her result and found it difficult to differentiate bad eye from good.
She saw Robin too so I was likely to get as good a result.
This helped me so much, she answered questions only she knew the answer to, such as
What was pain like?
What dressings will I wake up with?
How will I feel emotionally?
What does it look like with conformer in?
What helped you and what did you find hard to deal with?
The answers scared me, especially the photos, but it helped, I needed to know so as to prepare myself, mentally, more than anything.
