Tuesday, 27 September 2011

Grumble, grumble, wonky smile....

Silly me, I didn't say in my last blog post what our daughter's dream job is! She is Community Fundraiser for the Orpheus Trust, a charity which uses music and creative arts to provide young adults with special needs (physical and learning) with the opportunity to develop new skills, learn independent living and feel a sense of self-worth. It was set up by Richard Stilgoe some years ago and for a long time it was financed by royalties from the lyrics to "Cats", which he wrote but in recent years they have had to look more widely for their funding - which is where Amy comes in! She'll be working with a more senior fundraiser who has yet to be appointed but she is chock full of enthusiasm and ideas and can't wait to start (Thursday of next week). Best of all, it's very near home so we get to have her living with us for a while yet - no empty nest for me at the moment, thank goodness!

In other  news, I was at hospital for my weekly appointment with the consultant last Friday and <pause for fanfare> I actually drove myself!! I had gone out on Thursday with Amy for a test drive, just to make sure I felt confident enough and it was fine, so I thought I would give it a go.  People have been tremendously kind, taking me to and from hospital, but it's hard to lose the independence that driving gives you, so I was keen to see if I could cope without having to make further impositions on friends and family. The journey involves a bit of the M25, so it was a good test to do some motorway driving and all went well, even though on the way home I decided to take the scenic route and came across an unexpected road closure, so had to drive back to the motorway a different (and not very well sign-posted!) route. There's something not quite right, though - I have a lovely sporty Ford Cougar which Amy is driving (I put her on the insurance when she came home because I wasn't driving and her Focus is off the road, needing some work done) and I ended up driving Adam's little Corsa! Doesn't seem quite right, does it?? She's not insured for the Corsa but I am, so she's loving this situation, as you can imagine :-)

Back to the consultant - he was very pleased with how the skin on my neck has healed, although there's still a stubborn spot behind my ear and on my ear lobe which is refusing to heal quite yet. The inside of my mouth is still swollen and sore and there's a large mouth ulcer right at the back of my tongue which is proving somewhat recalcitrant and is stopping me eating because it hurts to chew and swallow. Not much I can do except just leave it to go away in its own sweet time. I had lost yet more weight (little appetite, mouth ulcer yada yada yada) so the dietitian had some words with me. "Drink milk", she said. "Hate milk", I replied .....anyway, I am eating more and it's all good home cooking so hopefully when I go back to clinic next week I will at least have stabilised, if not put weight on. In the meantime, it's quite gratifying to know that I am the lightest I have been for many years - even at the height of marathon training, I was heavier than I am now.  Hey, you have to look on the bright side, don't you?

The consultant doesn't want to see me for a fortnight, so that's progress. Hopefully the gaps between appointments will get longer although at some point I will need a scan to check that the treatments have got rid of all the cancer - that will be a worrying time, but I can't influence the outcome so am putting it out of mind.

The other side of things is, of course, the facial palsy. On Saturday, I went to a support group meeting at East Grinstead Hospital for people with facial palsy. There's a charity being set up and this was the second meeting of the group (the first one was when I was in hospital having surgery, so it's all fairly new). Neil and I went along and, although most of the other people there seemed to have developed palsy due to acoustic neuroma or Bell's Palsy, it was still refreshingly relaxing to be in a room where having a wonky face was the norm, not the exception! It was a useful meeting, discussing logos and straplines, what things we wanted in our newsletter etc, but surprisingly tiring. Talking really does wear me out (oh, the irony.....). It was a beautiful day, so on the way home we called in at a little pub/restaurant and ate some lunch outside, watching water-skiers on the lake alongside. The next development on the facial palsy side is that I have my initial consultation with the plastic surgeon (why does that look and sound weird? As if he's a Thunderbird puppet surgeon, not a real person....or is it just me?) in two weeks' time. I shall find out what he thinks he can do for me and hopefully get some ideas of timescales. It won't happen till well into next year, I suspect. I am so lucky to be a patient at East Grinstead Hospital, as they do truly ground-breaking work with this type of surgery, dating from the Second World War, when Archie MacIndoe did amazingly innovative surgery and treatment with pilots who had been hideously disfigured by air crashes and fires.

On Saturday evening we were taking part in a quiz - our team won last year but I wasn't feeling confident about my ability to answer many questions, given how mushy my brain has been recently but I am pleased to report that we held on to our title (nail-biting stuff - we only won by one point!). We won a voucher towards a meal at a local restaurant and a bottle of champagne (to add to the pile waiting for when I feel like drinking again!) and it was good to catch up with the others in the team, two of whom we hadn't seen for several months. I didn't feel too conspicuous because there were a couple of others at the quiz who had physical impairments but it was very difficult when they wanted to take a photo of the quiz-master handing over the prize to me (as team captain, I suppose) and I just couldn't handle the thought of having my photo taken. It makes me go cold inside to think of my photo being taken and then published somewhere. Whether that will change, I don't know, but I suspect not.

I think the problem is that I have felt from the beginning, when I first saw my face after surgery, that I look so different - not just different from what I used to look like, but different from "normal". That's not changed. Even after whatever surgery or other treatment the plastic surgeon decides on, I will never have my old face back, my old smile, the range of movement on the left-hand side. The surgeons may decide they will never restore my left eye to its old state. That's pretty hard to come to terms with, especially given how people make judgements on others based on what they look like. I know I was never in the running for any beauty titles, but I was at least passable. Nowadays, I just look wonky. I know I sound really shallow but it's quite hard knowing that the face you've had for 50 odd years has gone for ever. As if the wonkiness weren't enough, unfortunately, the consultant's prediction that my teeth would go yellow has also come true - one more reason for me to feel self-conscious about smiling and opening my mouth. Sometimes I feel the ripple effect from those little lumps on my jaw is never-ending. I didn't realise just how far-reaching the effects of treatment would be.

On the plus side, however, Adam has settled in really well at uni and seems to be embracing student life with gusto :-) Yesterday he was learning about how to teach maths to children, so it sounds as if it's good practical stuff.  He texted me this evening to say he is off to a student party where he has to dress as a school boy - classic stuff. Meanwhile, Amy is gearing up for her new job and Neil is trying to sort out a villa for us in Spain so we can get away in a couple of weeks' time - we both desperately need a chance to relax and forget about hospitals for a while, especially Neil, as he's been doing so much at work and at home over the past several months.

Goodness, this blog reads like "Poor me, look at all this horrible stuff" - and yes, it is horrible and it is hard to deal with. But I have so much to be thankful for - Neil, Amy and Adam, good friends, great hospitals and staff, sunny weather (this week at least!), visits from friends, invitations to meet up with people - really, I am very lucky. Added to which, I have a steady supply of super-duper painkillers to make it all go away for a while - I'm laughing, really :-)


  1. You're doing better than I am on the driving front! Haven't done it since pre-elbow.

    As for uni students, Miniwomble has ended up in a flat of 4, 3 of whom are male!!!! There you are, I knew you would laugh!

  2. Dressing up as schoolboys - hmmm? I remember his mum at the FLM (as it was then) running dressed as a schoolgirl - must be a family trait!


  3. Just popping in with a hug x

    I had the lovely company of Lynda for lunch yesterday, she was really in my real kitchen and I was a domestic *cough* goddess for her.

  4. oops I mean Linda, TP, evil twin in arms with you.

  5. No 'poor me' - just real life, and life gets tough, and the tough get going - yep - that's you! (Oops, nearly started singing then!)

    My biggest small person took me driving on Sunday - does it get any less scary after they pass the test?!? Not sure I'll be brave enough to share the car...

    Love to you all, and good luck to Amy for Thursday.

    Hugs and XX

  6. That didn't feel like a grumbly post but rather the opposite. You sound as though hard as things have been, that you're taking them in your stride.. Big hug to you. xxxx

    The husband of a really good friend of mine is a consultant anaesthetist at East Grinstead.. I wonder if you'll meet him in the future? Ed Pickles. He's a lovely, big Yorkshireman.

  7. I've only just caught up with your posts. It's obviously been really tough but I'm always amazed by your positive outlook :-)

    East Grinstead do some really good work, our Daisy had fantastic treatment there.