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....

Agatha Christie, Jane Austen, Laurent Perrier and other famous names....

Why, you may ask, have I listed several well-known names as the title of this blog entry? Have patient, dear reader - all will become clear!

Let me start with Tuesday, when I completed my second volunteer stint at The Orpheus Centre. This week, I was working along with another volunteer and together we were helping one of the students complete their work experience log. You will understand that I have to be circumspect about giving names of students, so I shall refer to this student as S. S has cerebral palsy, with very little speech and spasticity in her arms and legs. She is a wheelchair user and her main method of communication is with the help of an ingenious little book which uses pictures and symbols to work from a main menu down to individual words, based on categories. S can nod or shake her head, or maybe blink, to show when we are at the right picture/symbol. By using this, we were able to help her complete assignment sheets about her work experience. While physically limited, S has an intelligence with shines through when she communicates and she can show very clearly that she understands and is interested in what is going on. Both the other volunteer and I felt that S had taught us something, as we learned to use her communication book and she was really patient with our fumbling attempts to move smoothly between the pages and reach the word she wanted! She had been skiing recently and we were looking at the photos of her on her adapted ski-chair - fantastic that it's now seen as natural that people with a disability can take part in things like skiing (and long overdue, too).

After our morning session, we ate lunch outside and some students joined us. While many of them go to their flats for lunch, some will eat in the cafeteria and there are day students who don't have accommodation to go to, so they will eat there too. I like chatting to the students and finding out more about them and what they think. They like finding out about us too, and of course, they're very interested by the fact that Amy works there and I am her mum! To be honest, I think that interests quite a few of the volunteers too :-). We had an interesting discussion about the responsibility of choosing a name for your child and whether you should choose something that is "different" or stick to tried and tested (names and/or spellings!). After lunch and self-directed study, when I helped the student I had been working with last week to complete more of her work experience record, we went to the Barn for some of the groups to demonstrate what they had been working on this term. It was a real insight into the variety of activities and the different talents and skills the students have. We learned about the enterprise work of one group, growing and selling vegetables and the different dishes they cooked with their own ingredients. We also heard some of the experiemental music group's work, which was a really diverse set of pieces, with really personal interpretations and insights. I come home from my time there with a lighter heart and a smile on my face - the students and staff are really inspirational (a word that is a bit over-used nowadays, but which I think is entirely appropriate in this instance).

Following Pilates, my lovely hairdresser came round to wash and dry my hair because yesterday (Wednesday) I went, along with T (hairdresser) and four of her friends, on T's "hen day". I can tell you that there wasn't an L plate, pretend veil or set of wings to be seen, because this hen and her chicks did something totally different to the usual "dress up, be silly, get trollied" outings that seem to be splashed all over our town centres (and tabloid papers) on a regular basis. Instead, we dressed up smartly and went to Bath on the Orient Express!! What an experience!! For sheer opulence, glamour, old-fashioned sophistication and luxurious surroundings, all wrapped up in superb service, this is second to none. All the staff, in pristine uniform and universally smiling, friendly and polite, could not do enough to make us feel special. We were shown to our seats, our jackets placed on the racks above us, heavy bags stowed away and our chairs pushed in as we sat down. Our "main man", Artur, introduced himself and said that whatever we needed, we only had to ask him - and then he proceeded to pour us each a Bellini (my kind of start to a train journey!). We were then served (silver service) a freshly-cooked and delicious brunch; smoked salmon and caviar, scrambled eggs with chives - the works. After plenty of tea and coffee, Danish pastries etc, we had the chance to view the train. It was well worth walking the length of the train and seeing the different styles of Pullman carriage - they are all named individually and have their own theme and history. Our carriage was Cygnus and there were swans incorporated into the decor, including a mosaic on the floor of the loo! One of my great heroes is Winston Churchill and I was particularly pleased that Cygnus was one of two carriages on our train which was part of his funeral train. That sounds like a strange and possibly morbid thing to be pleased about, but it made me feel some sort of connection with the great man. I get the same feeling living near his home at Chartwell - he must have walked down, or (more likely) been driven down the same roads that I use sometimes.

We arrived in Bath to blazing sunshine and were taken on a tour of the city by bus, including the famous Crescent, and then T had arranged for us to see a demonstration of glass-blowing, with the chance for us each to blow a glass bubble. That was a bit of a challenge for someone whose mouth only half-works, but I managed to create a fairly respectable, if weirdly shaped, bubble! T is the most sweetly generous and kind person and had arranged for us all to have an amount of money to spend in the glass work's gift shop, in addition to subsidising the cost of the day (I told you she was generous!) so we had fun choosing what to purchase. I chose two lovely turquoise-coloured wine goblets, as I thought they would be totally suited to sipping a pre- or post-prandial drink in the garden over the summer....assuming we have decent weather and that this current spell of warmth and sunshine isn't all we get this year!

After this, it was time to return to the station to catch the train home. That makes it sound like a daily commute, but it bears no resemblance to the London Bridge-Oxted service except for the fact that it runs on the same gauge track! A glass of champagne for each of us once we were seated set the standard for the journey and we enjoyed a superb four course meal, with wine and champagne (again, generously provided by T) and, as the wine flowed, so did the conversation! I really enjoyed meeting T's friends, all of whom I met for the first time yesterday, and I really did feel that I made some new friends and that we will keep in touch. That's a good feeling, isn't it? I like the thought that we can gather new friends as we go through life and that our friendship bank account can increase its balance. I've had a couple of debits to my friendship bank account over the last year, as I've mentioned in previous blogs, but a huge number of credits, so overall, I'm in a healthier fiscal friendship position than last March (if that makes any sense at all!).

The journey home just whizzed by - doesn't time always fly when you're enjoying yourself? - and all too soon we arrived back at Victoria and returned to normal, catching the train back to Oxted, where T's soon-to-be husband was waiting to drive us all home (he's lovely too!). I was full of my trip when I came home, babbling on to Neil and Amy, who were *enjoying* assembling a wardrobe for Amy's new bedroom....... I was very pleased that I managed to drink some champagne on the way home (I tried a sip of the very nice red wine, but it still tastes like vinegar to me), as it felt like I was just the same as everyone else, enjoying a little drink. And yes, I did enjoy it!

Today was the last meeting of my Lent group, which I have been hosting at our house for the past five weeks. It's a great little group, from across several of our local churches, so we have different denominations represented, and we have all been interested in, and respectful of, each other's views and beliefs. To close the session, we had decided to have a simple lunch together, so I made some soup and we had that with bread. Our theme today was Communion, so it seemed appropriate to "break bread" together. I have felt very blessed by my little Lent group and the trust we have all placed in each other to respect our thoughts and beliefs. They very kindly bought me and the Leader of the group a beautiful plant in a basket as a thank you (totally unnecessary, but very sweet of them) and the Leader had also bought me one, so I have beautiful colour in my sitting-room. I'd suggested that instead of people bringing things for lunch, I would provide it and people could make a contribution towards Fairtrade, which is supported by all the local churches, so we have a nice little sum to hand over to them.

I did have to take some photos today to renew my passport and I have to be honest and say that I found it difficult to look at them. I think that, like a lot of people, what I see in the mirror isn't necessarily how I look to other people and how I look in the mirror is definitely not what I see when I look at my photos! However, my passport expires soon (so does my MOT, but that doesn't need a photo!) and I do look different from my old passport photo, so have to have a new one done. If/when I end up having facial surgery and I look different again, I can always apply to change the photo at that point, but in the meantime, I have to go with how it is now. I suspect that if I had had to take these photos six, or even three, months ago, I would have been quite upset. Now I can almost shrug my shoulders and say "Well, that's how I look, so just accept it". I think that is progress.

Overall, my positive streak continues. I'm doing lots of lovely things and generally feel happy and strong. I think a lot of this is linked to this beautiful weather, so I'm not looking forward to the change this weekend...we are going to a family wedding on Saturday and, while I'm sure the bride and groom won't care about the weather, I can't help feeling that it's a bit disappointing that the temperature is going to drop by about 9 degrees and the gorgeous sunshine is going to be covered by cloud! Adam comes home from uni tomorrow, so my little family unit will be complete for a couple of weeks and I am really looking forward to that - and on that happy note, I shall sign off!