Saturday, 28 July 2012

It's hit the shelves!

Very quick update - you remember I have hinted at a secret I couldn't tell you? Well, I can tell you now (if you haven't already read it on Facebook!). I am featured in an article in Prima magazine, the September issue (which is on the shelves now). I wrote to them and asked if they would run a feature on facial palsy and they asked me to write it - fee being paid to Facial Palsy UK charity - and sent a photographer round and everything! It's been lightly edited to suit their house-style but remains pretty faithful to how I wrote it.

I am so excited! Anything that raises awareness of facial palsy has got to be good news!

Rush out and buy it, folks!!

Thursday, 19 July 2012

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....

Monday, 16 July 2012

How has your summer been? This is mine....

Over a month since my last post - it's not because nothing of note has happened, but more because I just keep forgetting to come on here and write! I have noticed that my memory has been worse since my radiotherapy last year, I suspect because some of my brain cells might have got fried (well, that's my excuse and I'm sticking to it....). I've also noticed that, since I'm not having to go to work during the day and therefore have plenty of time to do things, I have become very time-inefficient: what I used to be able to do in an hour or two at the end of a working day now takes me about five or six hours. I suppose that because I have plenty of time on my hands, my "tasks" have expanded to fill the time available (is that Parkinson's Law? where work expands to fill the time available?).

What has been happening since I last posted? I shall do a list - not necessarily in chronological order:
  • we collected Adam from university and took advantage of being in the Lake District to travel up to Glasgow and see my mum. She was in hospital following a fall at her care home and quite confused when we first saw her, but she improved over the weekend. Her memory for the far past is good but she isn't always aware of who we are, or that we are grown-up rather than babies. She's now back at her care home. We will see her again in September when we return Adam to uni;
  • Neil and I went to see Shrek - the Musical on Father's Day. Brilliant fun! Plenty for adults as well as children;
  • I met up with two other women who have Facial Palsy. We all "know" each other through a Facebook group set up for people affected by FP and, as one of them was spending a few days in London en route from America to Transylvania (no, really!), and the other two of us were in the South East, we met up in London and wandered around the National Gallery before having lunch. It was good to be with other people affected by FP, rather than being the only one - safety in numbers! ;
  • I'm still volunteering at Orpheus every week and loving it. We had a "Come Dine with Orpheus" day, when the students were allocated a country and had to plan a menu, write and price a shopping list, shop, prepare, cook and serve - we all ate together and there was a judging panel. The students loved it (and so did the staff and volunteers!). Term ends this week, so tomorrow is my last day with the students till September. I helped at the Open Day on Saturday, which required me to do lots of baking (photos on Facebook last week). Great day - I was able to watch some performances by the students, including a Street Dance show, and then took part in a dance workshop. I believe I am now able to "bust some moves", as they say....I also was lucky enough to be invited to the Orpheus Gala at Trevereux Manor, where I met Prince Edward (patron of the Orpheus Trust) and enjoyed some superb entertainment by the students and a singing group called Cantabile;
  • My professional institute (CIPFA) held its annual conference in Liverpool and as I am once more an elected Council member, I went along to this. I was quite anxious beforehand: I missed Conference last year for obvious reasons and was pretty apprehensive about seeing so many people in one place, some of whom would know my story but wouldn't know what effect it had had on my face, some of whom had seen me so knew what to expect and many who would have no idea who I am and why my face looks different. I was so anxious that I developed a sicky headache the day before I was due to travel and ended up being sick on the morning of my journey, but my apprehension was unnecessary. Everyone was lovely to me, interested in how I was and pleased that I was involved again. It's odd, how I still find it difficult to go to new places, even though I know that my face looks much better than it did. I think the psychological impact of facial palsy is perhaps more difficult to deal with than the physical impact;
  • I ran the British 10k in London, to raise funds for Orpheus. I thought I would do it in about 1.15 or 1.20, but surprised myself by running it in 1.03.48 - not bad, given I had done no running for three weeks, no gym for two weeks and had stuffed my little face while in Liverpool!;
Those are the edited highlights of the past five weeks or so. I am struggling with the weather at the moment - I have always been affected by poor weather but normally I am okay in the summer because the weather is, well, summery! Not this year, though - I can feel my mood being pulled down every day the rain falls and the sky remains gunmetal grey. I am grumpy, snarky and not a nice person to be around - to my family, and particularly my lovely husband, I apologise. I find it so frustrating that last summer, when the weather was pretty decent, I wasn't well enough to enjoy it and had to stay indoors, out of the sun but this year, when I am well enough to potter around in the garden or go for long walks, the weather is totally rubbish. I could almost feel victimised......

I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.