Friday, 5 October 2012

The constants in my life

 Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.

Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.

And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.

One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.

Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.

And so back to Britain and more least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.

This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.

And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!

Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.

To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).

Family, friends, exercise - three constants in my life.


  1. It's brilliant that you've come so far in just 12 months!

    1. Thanks, Nykie. It's good sometimes to look back and remind myself of how far I have come!