Thursday, 13 October 2011

No new face just yet....

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".


  1. Oh, how terribly disappointing for you. Sometimes just having a goal to work towards can make it all more bearable.

    Nothing I an say can make you feel better, but just know that people are reading, listening and sympathising.

    I don't want to be all "oh, you are brave" patronising, but you are an admirable woman.

  2. Ali,

    You don't have to apologise for a 'miserable' post and don't feel bad for feeling miserable You have every right to be upset about this and you've said all along how important this surgery is to you and the changes you see in the mirror are probably some of the most painful reminders about what you've been through too. I'd have had my hopes up too if I'd been told a year too. .....

    As your (then) consultant had said a year, is there any chance he can speak to the plastic surgeon or is the time for this op very much in the hands of the plastic surgeon?

    I'm sorry you didn't get better news today. I shall keep my fingers crossed the timeline changes for you.

    Thinking of you,

    N xx

  3. I'd feel a slump on this news. Your expectations about a very important event have been trashed :-(

    The stupid thing is that if they'd said 2 years at the beginning I suspect you'd have adjusted by now.

    I think you are pretty positive in your posts. You're not hiding away and you're confronting this. It's hard work to do so I'm sure, but please do. I can't imagine 'Ali the recluse'!

  4. Have a lovely time away and enjoy the warmth and sun shine.


  5. Well I wish I could just wrap my arms around you and give you the hugest hug. It's so hard getting a knock like this when you thought you knew what you were dealing with, time-wise. If this was always the surgeon's policy, I'm angry that this wasn't made more clear to you earlier.

    Please don't beat yourself by comparing your situation to others - you are entitled to feel the way you do.

    Big hugs and lots of love

    Geves xxxx

  6. Thank you all for your supportive and thoughtful comments. I don't know if I can persuade the surgeon to bring it forward - depends on when/how the Marsden decides to check if they've got rid of all my cancer (please God they have). It's hard thinking of questioning a professional's judgement, though.

    I hope "Ali the Recluse" never makes an appearance!

    Thank you so much - I can't tell you how much the comments left on here help me and Neil. xx

  7. Like the others have said, no apology necessary. That's a huge blow to your hopes for next year. This one has been so rotten that it's only fair you should be hoping for more positives next year.

    You are still gawjuss and always will be.

    Big hugs and have a lovely holiday.

    TP x

  8. You aren't being rude by asking questions. It's not questioning their judgement so much as just trying to understand. And consultants should feel comfortable with that anyhow.....

    I like asking questions for a few reasons:
    - If there's a difference between what two consultants have said, and I like one answer better than the other (:)) I may be able to get the consultants to talk to see if they can come to a happier medium. Consultant (b) may not have the full information I think they do. If I'd not done this with my arm, I may have ended up having a different op and it'd not have worked out as well.
    - It helps me to understand more about why they are thinking one way. Just a simple answer isn't always enough for my brain. (Poor consultants)
    - It helps them to know I am interested in considering other options, or what is important to me.
    - And although many consultants are almost always right, they aren't always right.

    It's your body and your life.

  9. (Part of my post cut off)

    Also, if they can't operate any earlier, would it help if you could speak to someone a bit more about how much how you feel about your appearance is hurting you. Maybe they can offer some tips or something

    (Apologies if this is a useless comment)

  10. hugs ali, I can imagine how your hopes were built up and dashed. huge huge huge hugs xxxx enjoy your holiday and be kind to yourself xx

  11. Ali - I can barely imagine how disappointed you are. I'm joining the long queue of peeps wanting to give you a cuddle.

    Please, please, please never think you are ugly. You could never be that. You're one of my favourite people and I only ever hang out with the beautiful.

    Have a wonderful break.

  12. I agree with Madge, that if they'd said 2 years at the outset it wouldn't have been 'easy' but you wouldn't have had this huge extra chunk of time thrown at you. I do understand that certainty can be far more helpful than the actual timing in the certainty. I think it is worth talking to the various consultants to get them to review your case at regular intervals. They don't necessarily keep up with progress in the different facets of your treatment. I suspect they're used to patients just doing what they're told and not being challenged. Make them work a bit harder!

    Have a lovely holiday xxx

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