Sheesh! I wrote and published a post here yesterday, came in this morning to correct a couple of typos I had noticed and the whole post has now disappeared - I am not impressed, Blogspot!! So now I have to try and remember what I wrote - for someone with the memory span of a blancmange, this is Not Easy. Here goes....
The last time I posted, it was just after the London Marathon. I am pleased to report that my enormous blister, a reminder of my little stroll around London, has now disappeared. I am of the "prick and squeeze" school when it comes to blisters - can't be doing with leaving it to reduce and disappear of its own accord (impatient? me??). Amy did sterling work in helping with my chosen course of action (sorry that you got sprayed with blister juice, daughter!) and although for a couple of days all I could wear on my feet were my Ugg boots, everything else was fine. My tired legs became untired within two days and I even managed a small trot on my way to the railway station on Tuesday, when I had the first of my medical appointments of the week: a trip to Charing Cross Hospital (confusingly, nowhere near Charing Cross!).
One of the side-effects of radiotherapy to the part of the head where mine was targetted is damage to the cochlea, resulting in loss of hearing which can be permanent or temporary. I had been deaf for a few months in my left ear - stone deaf, not just a bit hard of hearing. That, coupled with my lack of peripheral vision in my left eye, has left me feeling quite vulnerable, even in Oxted, statistically a very safe place. I had noticed that my left ear had started "popping" - initially very infrequently and resulting in my hearing returning for only a couple of seconds, but gradually becoming more frequent and the clarity of hearing lasting for longer. I am happy to say that my hearing test confirmed that, apart from a loss of hearing at higher frequencies particularly, my left ear has returned to a similar level of hearing as when they baselined my hearing last June/July, before my r/t started. There's no need for any kind of hearing aid - certainly not at this stage, although they will be monitoring me to make sure there's no further deterioration.
Over the past few months, I have got to know some mums from the website Mumsnet (worth a look if you like intelligent and funny debate) and had arranged to meet one of them at Westfield, near where she lives and a couple of stops away from Charing Cross Hospital. I know some people find the whole concept of "virtual" friends a bit odd, but over the past seven years, I have met many people I first knew virtually through the Runners' World website and quite a few of them have become good friends in real life, so I find nothing unusual in getting to know people in an online community and considering them to be friends, even if we never actually meet! However, I was able to meet this Mumsnet friend and her very cute daughter and we had a lovely afternoon, drinking tea, mooching around the shops and chatting.
The following day, I attended my first Finance meeting to represent the Surrey and Sussex area of my church synod. This was held in East Croydon URC and as I sat in the meeting, it felt very much like sitting in finance meetings at Croydon Council - plus ca change! The numbers might have been on a much smaller scale but the principles are the same. And there was cake, so that's always a good thing.
On Thursday evening, I had arranged to meet up with a former colleague from Croydon - she now works for Camden but lives near Croydon, so this made good logistic sense for us both. I think it is a measure of how much more confident I feel about how I look that I was absolutely fine about walking into a very crowded bar to meet her - I didn't even think about whether people might stare at me. We had a very good catch-up over a bottle of Cava and then went for tapas nearby. I don't know whether it's my age, but I got to the point where the music in the bar was so loud that I felt I was having to shout to be heard and was struggling to hear what my friend was saying in reply....am I getting to the point where I mutter darkly things like "The youth of today" and "It wasn't like that in my day"?
On Friday there was a meeting of Headstart, the support group for people who have/have had head and neck cancers (a broad catch-all encompassing everything in that area). These meetings move between three hospitals: Maidstone, Medway and East Grinstead. This time, it was being held in East Grinstead (my second home, I often think, along with the Royal Marsden). Usually these meetings are held on a Saturday and Neil comes along, but he couldn't take time off work so I went on my own.
The meetings are always very buzzy and chatty - a chance to talk to people who understand exactly what I might have experienced. Although I haven't yet come across anyone who has had exactly the same as I have had (that's what happens when you get something pretty rare! I'm so special, you know....), there were plenty people there who have some kind of facial palsy or disfigurement as a result of their cancer and/or treatment, so it feels like a meeting where I am taken at face value - literally! We always have a quiz and at the two meetings which Neil and I have attended, we have won the quiz quite convincingly. This time, since I was doing the quiz on my own, I wasn't expecting to win but, dear readers, I am delighted to tell you that I did (I think it was knowing Offa's Dyke that helped) - I won a rather lovely travel pack of L'Occitane goodies, which will come in very handy for our forthcoming trip to Sicily. Friday must have been my lucky day, since I then won 6 prizes in our raffle, although I told them to redraw after I won the first one. It seemed a bit greedy to take something every time one of my numbers got drawn out! I should have bought some lottery tickets, shouldn't I?
And so to Saturday, and a day-long Makaton for Beginners course. I did this along with another volunteer from the Orpheus Centre. Makaton is a signing programme which uses signing, symbols and speech (so not the same as BSL) and is very good for helping children and adults with learning difficulties to communicate. Interestingly, it is also very good as a communication means for young children without learning difficulties. Both our children learned a little while at Junior School and they use it a lot in their work with children and young adults with learning disabilities. Of course, like any language, you have to use it regularly to retain it and become more fluent, so Jenny and I were practising at Orpheus on Tuesday, which caused some amusement with students who are much more fluent than we are - our fumbling, stumbling attempts at Makaton brought a smile to their faces anyway! I found the day quite tiring - we did pack a lot in and I am not used to using my brain and concentrating for long periods, but I view this kind of activity as good preparation for my return to work (if ever any work becomes available in local government!).
And now the the little pricks I refer to in the title of this post. On Tuesday, I had an appointment with my consultant plastic surgeon to have Botox in my chin, where I have a dimple caused by over-compensation. I hadn't seen this consultant since my initial meeting with him in November last year, when he told me that he wouldn't do any surgery (facelift) until two years after my cancer surgery, which would be in May 2013, so he hadn't seen my face for six months. My speech therapist (who doesn't do anything about my speech but is a facial palsy specialist and helps me with massages and exercises to try to achieve symmetry) sat in on our meeting and I am delighted to report that both of them, when I raised my eyebrows for them, gave a spontaneous "Wow" (or words to that effect), because the movement I had was so good. I can't tell you how pleased I was by that - I had noticed, despite my severe self-criticism, that my face was looking better, more "normal" in its relative proportions and movement. Certainly, people I hadn't seen for a few months had been saying this to me, and even people I see regularly were commenting on how much my face has improved. In fact, at rest it looks pretty much like it used to, excepting the slightly smaller left eye. But to have two experienced professionals in the area of facial palsy to comment on how good my face looked meant a huge amount to me. I asked the consultant whether, if my face continues to improve as it is doing, it might be the case that surgery would bring about such marginal improvement that it wouldn't be worth the trauma of surgery and the inherent risk of a general anaesthetic and he agreed. Six months ago, if you'd told me that I might not have any surgery to my face, I would have been distressed but now I can see how this might be an option - and the best one at that. I think this is real progress for me - it means I accept how I look and am more confident about it.
I mentioned to the consultant that the colleague who would be reopening my eye was going to sew some gold weights into the eyelid to help it close and he thought that my eye closure was good enough that I might not need them - another thing that made my lopsided smile appear again! I won't be having my eye reopened until the end of the year (long waiting list made worse by the fact that the surgeon had an accident! He's fine, just hobbling about, apparently), so that gives my eye another 8 months or so to improve before he makes the decision about whether I need weights or not.
So, all in all, a good meeting! I then had my Botox - an injection into the chin, one into the palsied side of my mouth, because it's doing something it shouldn't when I screw my eyes up and one into the non-palsied side, so that my smile looks more symmetrical. They really are just tiny little pricks and take a few days to work, so there's no discernible difference at the moment.
I felt very buoyed up when I left the hospital. It feels as if things are looking more positive and I am accepting how I look - still trying to improve it, but recognising how far I've come. Interestingly, last night I found the sheets from my very first session with the speech therapist, two weeks after my original surgery - there are photos of my face, showing how I have to position my fingers for the facial massage, etc and my eye is still swollen and bruised from the surgery and my face...well, I had forgotten (blanked from my memory?) just how droopy and swollen my entire left cheek was, hanging down like a useless lump of flesh. My eyebrow was resting on top of my eyelid, making my eye look even worse. What a difference to how I look now! Yes, I know it's not symmetrical, I know it's not perfect and I know that, when I talk or laugh or smile, it's obvious that the left side of my face doesn't do quite what it should but it's still hugely better than it was.
It's so good to write a positive post and to acknowledge that there's more acceptance from me of how I look. I have railed against it, I have been depressed and despondent about it, I have grieved for the face I had for 50 plus years. That face won't come back, but I am beginning to like the one I have.
Of course, my lovely family and friends have said all along that they don't notice my face, after the first couple of minutes of seeing me for the first time. Neil, Amy and Adam tell me I am beautiful (the short-sighted fools!!) - not every day, when it would become something just trotted out and banal in its frequency, but often enough for me to be boosted by it. This kind of support has helped me enormously, even if at times I have responded by commands that people should get eye tests.
At a time when things are going well for me, there are still people who are suffering. Last week, a good friend of mine, who has been immensely and quietly supportive of me over the past year, had some bad news which has left her and her husband very sad. I can't and won't go into details, but I hope she knows that there's so much love and support surrounding them, not just from me but from the many friends and people she has helped.
We all have our bad times. Now my times are better, possibly even good, it's a salutary reminder that just because my world is going okay, it doesn't mean that everyone's is.