Thursday, 30 June 2011

If only there were a handbook about how to deal with all this.... would make it so much easier to know if we're handling it the right way - if indeed there is a "right" way. But there's no handbook, so we just have to plough on, hoping we're doing it properly. I suppose that, since we are all individuals and will react to things differently, a handbook wouldn't be too much use in any case. I just wish that there was some way we could know whether what we're doing is sensible and will help us get through this nightmare.

I do try and put a positive spin on things - joking about getting a facelift on the NHS, thinking how lucky I am to be enjoying the sunshine in the garden when everyone else is at work, having the time to do things I've never got around to doing  - but some of the time, it's just masking how I really feel. Behind this cheerful facade, I am sometimes screaming inside.

Every time I leave the house, I have to steel myself to face people. It's worse when I am on my own, because there's no one to make me feel less exposed, or to reassure me that no one is really looking at me. I am ridiculously happy if the sun is shining, because it's a reason for me to wear my sunglasses, which at least hides my hideous piggy little eye. Then all that people will see will be my swollen, lopsided cheek and jaw. For someone who has always had a good level of self-confidence, this fear of going out in public and the need to brace myself and gather up my courage is a scary and unknown feeling. I used to think nothing of just wandering into our town and going into shops, browsing, buying, chatting to shop workers and other customers. Now I see it as an ordeal, necessary as a way to try and make my life as normal as possible, but draining me of both energy and confidence. I can't see it getting any better in the short-term either. My face isn't  going to change any time soon. As the summer changes into autumn I won't even have my sunglasses to hide behind.

I don't want to become a recluse. I want to go out and try to live a normal life. But it's just so very hard sometimes to pretend that all is well and that I can deal with it. Much of the time I can deal with it, but underneath there's a very scared person, struggling to cope, masquerading as a confident, cheerful person. That scared person has to make an appearance sometimes, for my own sanity if nothing else. It's tiring to keep that person hidden. Well, she's certainly making an appearance today!!

I sometimes think that if I were only dealing with one thing, I could cope so much better. If I only had cancer to deal with, that would be difficult enough. Dealing with cancer and a very obvious disfigurement sometimes feels like too much for one person. There's so much to manage - medical treatment and the physical effects of that (and emotional effects too) and the psychological and emotional impact of the facial palsy. I have handed over all responsibility for my medical care to the experts, but I am the only person who can manage my response to the facial disfigurement.

I know I am not on my own. I couldn't cope as well as I do most of the time if I were on my own. I don't say it often enough, but Neil has been, continues to be, and will be, a complete rock to me. He listens to my grumbles, he looks after me physically and emotionally and he shows me  in so many ways how much he loves me.  I know I am still beautiful to him and that to him, I am the person I have always been.  We're fighting this together, a strong team, but it's hard for both of us. Still, they do say that what doesn't kill you makes you stronger, so we should be pretty invincible by the end of this long journey.


  1. Sending love and hugs to you Ali, and especially to that scared person. xx

  2. +1 to what LN said.

  3. Ali.
    We are all with you in spirit.
    Big hugs to you and I know you will let me give Neil a hug as well

  4. Ali - here's a question for you for a blog. What can we do to help you? What is supportive? What isn't supportive? Is there anything people say that makes you upset, even if their intentions are good?

    N x

  5. Honest blogging, Ali is probably in the Handbook of how to deal with Crap.
    No answers to your questions but I suspect that age old platitude, really is true here... time will make it better. You are making a massive adjustment in terms of your health and perception of 'who you are'
    No one can experience that with you so we can't possibly understand..... but our viewpoints are still valid because who we see... is the same person that you see in the mirror.
    (Not sure this makes sense...v tired and glass of wine...)

    Also worrying about my grammar and English :-S

    Intention is good!