I am trying to be a bit more disciplined about updating my blog, rather than wait for a couple of weeks before posting anything, but as my normal day-to-day routine is pretty monotonous, I can't see much point in posting every day - you'd get terrifically bored with it all, I can tell you!
However, today I had an appointment with the consultant plastic surgeon at Queen Victoria Hospital, to talk about what he might be able to do for my facial palsy and also to get on the waiting list. Way back in May, before I had my surgery, my (then) consultant said that nothing would happen in respect of aesthetic work on my face until about a year after my surgery. While that seems a long time, Neil and I both recognised that I would need to recover fully from the surgery and the subsequent radiotherapy and also that, because nerve regeneration is notoriously slow, enough time had to elapse to give my body the chance to recover as much as it could naturally. I guess I had pretty much assumed that, come May/June 2012, I would be beginning a programme of surgery to restore my face to something more approaching symmetry.
Imagine, then, my disappointment when the plastic surgeon said that he wouldn't do anything for two years after surgery, to make sure that it didn't interfere with any oncology that might be needed and to be sure that the cancer had gone. I understand the principle of it, but the thought of dragging this lumpen face around for another 19 months before anything can even begin to happen has really pulled me down. I feel as if I want to hide myself away until May 2013 and then restorative work can begin. I won't, of course, but I really feel as if some element of stability has now been taken away and I have to deal with it. I need to get my mind to the point where I feel strong enough to accept that, for the rest of this year, all of 2012 and a large part of 2013, I will have to take this wonky face with me wherever I go. I want to go back to work of some kind next year, but today the thought of boarding a commuter train and walking into an office fills me with stomach-clenching dread. And of course, the worry that further oncology might be necessary is very real.
There were a couple of small positives, I guess - there is definite movement of the eyebrow on the left side of my face (where previously there was none) and when I close my eyes tightly, the corner of my mouth moves slightly (again, no movement there previously) and when I smile (such as it is) the corner of my left eye creases (again, new movement). All tiny things, but by coincidence my speech therapist came in while we were with the consultant and she was very pleased with my progress. The consultant explained that the facial nerve has five branches and that the stems of a couple of the branches seem to be working, so I have to continue with the electrode stimulation (ooh err missus!) and he will see me in a year to review progress - a year!! However, I will continue to see the speech therapist for her to monitor me. I also asked about the possibility of having my eye opened up again and, after asking me to blink, close my eyes, screw them tightly shut etc, he said he would write to the surgeon who had performed my eye surgery and ask for a referral - who knows? It might happen, it might not. I have to say that I feel having two eyes the same size would make a big difference to me, but that was on the basis of having other facial work done next year.
I do find it hard to know that I will look the way I look now for such a long time. Once again, poor Neil has had to listen to my sobbing and squeaking (for some reason, when I'm upset my voice won't work properly!) about how ugly I feel and how I can't bear going out and seeing how people look at me etc etc. I know I said this in an earlier post, but I do have to steel myself to leave the house and be seen in public. I try to go out every day, even if it's just down to the local shop to get some milk or bread, otherwise there's a chance I would just stay at home all the time and not face anyone. But it is hard to go out, knowing how different I look, not just compared to my old face, but compared to most people's definition of "normal". Being stared at doesn't get any easier for me. I wish it would. And then I feel guilty for being upset about this, when our friend Carl is still in a coma and his wife and daughters would give anything for him to waken up and talk to them and wouldn't care what he looked like.
Finding it very hard today. I know that going away for a week will really help both Neil and me - just being away from hospital appointments and the normal daily routines will be so welcome. I feel bad for Neil that I am feeling upset and low just before we go away. I have also had to pull out of the Olympic volunteer programme, for which I had been interviewed and offered a post, because I just don't feel I can do it.
Sorry for such a miserable post. Neil, as always, keeps me sane and safe, tells me I am beautiful to him (I did get my hair done yesterday and am now more of a foxy redhead/brunette!) and supports me through everything. Add in my wonderful children, amazing friends and neighbours and actually, I am so very lucky. I do know this. I just feel it would be good to have some positive news on the medical front, after the last few months. At the moment, though, it's just "wait and see".