The one where we become official!!!

Sometimes weeks go by with nothing special happening, no events worthy of note, just ordinary, everyday life - nothing wrong with that! In fact, ordinary, everyday life is precious to me because I wasn't sure, during my darkest, illest days last year, whether I'd experience it again. Even today, I'm honestly not sure how many ordinary, everyday times I have ahead of me, but that's not something to dwell upon, is it?

This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.

You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.

First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not  his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.

How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.

I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!

Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.

However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference  and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.

The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.

All of us today appreciated the support and love of our families and friends. I hope you all know this!

It's going to be an eye-opener....literally!

Quick update to share some breaking news with you all - you may remember that, during my original surgery in May 2011, the outer corner of my left eye was sewn to reduce the amount of cornea exposed. This was because blinking is very often compromised when the facial nerve is severed and reducing the eye surface reduces the risk of debris damaging the eye. However, my blinking is good and so my eye surgeon agreed to reopen the eye.

This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!

I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will  mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!

Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.

I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....

Bounce, bounce, bounce....

Yesterday, I spent my first day as a volunteer at the Orpheus Centre. The sharp-of-memory among you will remember that this is where our daughter works as a community fundraiser and that it is a charity which encourages young people with disabilities to use their talents in the performing and other arts as a gateway to independent living. Since I am not yet back at work (and won't be working full-time in any case), I wanted to put some structure around my days and also do something in the community, so this seems like a good opportunity to get involved in something new and be more outward-looking.

Reader, I loved it! I was working with a group of students (they are all aged between 18 and 24) in a Futures workshop, where the students are preparing for, doing and then writing up their work experience activities. I worked with a young woman who has Downs, helping her produce a record of her work at a Day Centre, where she lays tables, serves food to elderly people and clears away. We had a lovely day (well, I did, at any rate! you'd have to ask P whether she did as well) and by the end of it, she had produced her worksheet of photos and comments. It is such a lovely environment to work in - so positive and supportive. Everyone was really friendly to me - I got several hugs from students and one young man walked me to the classroom, holding my hand and miming bagpipes because he knew I am Scottish - he has limited speech, so I am going to try to learn some Makaton so that I can communicate a bit with him. I recognised one other volunteer - the chap who led the drumming workshop at my church a few weeks ago ( I blogged about it). I hadn't realised he volunteered there, so we had a quick catch-up and it always helps when you see a face you recognise, doesn't it?

I found the day quite exhilerating, but very tiring. I was there from 9.30 till 2.30, so was home well before three o'clock and was fit for nothing but stretching out on the sofa for a couple of hours (lightweight!). I had Pilates at six o'clock, which I managed to stay awake for, although it was tough at times....

Today, I was at my Institute's South East Spring Conference and AGM. I was fortunate enough to be given a slot on the programme to ask for sponsorship for the London Marathon from the delegates and, although I found it hard to stand up and talk in front of a room full of people (some of whom I knew, many of whom I didn't). I knew there was the potential to get upset, not necessarily because I had to talk about what had happened to me, but because I was thinking that the reason I had missed this Conference last year was because I was just starting down the path of medical examination to find out what was wrong with me - and also because standing up and inviting people to look at my face still makes me squirm a bit inside. As often happens at these potentially emotional times, I used humour as my shield and got a couple of laughs out of them - and about £150, with the promise of more to come! So it was well worth the squirminess to get some more money for Macmillan.

By three o'clock, I was visibly wilting - two days in a row of different activity had taken its toll, so I went home early and have been relaxing on the squishy sofa. I'm glad I've had two busy days, as it helps me gauge my stamina (not quite as good as I thought it was, but then again, I've still got the remnants of this rotten cold) and it keeps me outward-looking, which I need to be.

I have had a positive week so far - I think I am really going to enjoy working at Orpheus and am looking forward to next week's session. Today was a great opportunity to hear some superb speakers and to catch up with old friends (I saw about four people I taught when they were studying for their accountancy qualification!) and to do some networking. I have had a very exciting invitation to an event from a lovely friend (won't give any details till nearer the time, just to keep you all reading this blog!!) and a positive chat about some potential work later in the year, so for once, I feel things are going my way.

I've just been talking to Neil on the phone, telling him about my good day today, and I said that I have had such a brilliant day that I am almost waiting for my bubble to burst. I think this is a reaction to having had such a shocker of a year last year and getting to the stage where I think that I am always going to get bad news (ever the pessimist, eh?) - I should just be happy and enjoy the moment. And I am happy and I am most definitely enjoying the moment - in fact, I am sitting here with a face-splitting grin :-D))).

Life is good and I am enjoying mine.