Friday, 22 July 2011

One week on....

...and it feels as if Amy has never been away! Within 24 hours of being back home, she was off clubbing until 4 in the morning with her friends - and quite right too. It's been great to have her friends coming round and squashing up on the sofa, watching Harry Potter films with me as I try to bring myself up to date with what's happened so we can go and see the final film. Trouble is, I have forgotten what went on in the early films, so have had to start from the beginning - that's  a big HP filmfest!!

Adam loves having his big sister home - boy, has he missed being bossed around! He's got a whole year's worth to catch up with now.....

In matters medical, not much to report. I had my scan on Monday, wearing my mask, so that the clever physics people can plan my treatment. The mask wasn't as uncomfortable as I feared it might be, but I was only wearing it for about 7 minutes, so wearing it for 20 minutes every day might be less pleasant. I also got a little tattoo, to help them line up the mask and the radiation. It's a tiny little dot, just at the top of my *ahem* cleavage....Neil has suggested that I could get it made into the dot above the "i" in "Neil" - I think not, somehow! But you never know - if he catches me in a weak moment, or when I'm unconscious, it might happen! I had to go back to the Marsden today to sign consent forms and complete a questionnaire for a clinical trial of radiation treatment for my type of cancer. Sadly, I am in the control group rather than the trial group for the different radiation, but at least I am part of the study and will have regular hearing and balance tests to see whether the trial treatment makes any difference to the effect of radiation on the middle/inner ear. For the first time, we found out that the risk of hearing loss is, in fact, a certainty - at least in the short term. Apparently, because there will be fluid in the ear as a result of the radiotherapy, I will lose some hearing in that ear for at least a while. It will mostly be higher frequency, so some types of music and speech might be lost to me. I so hope it will be a temporary effect, as the thought of not being able to listen to music and enjoy it the way I do now makes me sad. I get such pleasure from music and have been listening to a lot of classical music particularly over the last couple of months. Oh well, just have to wait and see what happens...I might be lucky and not have any long-lasting damage.

Radiotherapy starts on Wednesday of next week and, just in time for my daily journeys to hospital, there are major roadworks starting. Neil worked out a cunning route home which avoids the roadworks and will mean we won't get caught up in the inevitable traffic jams. My challenge is to remember this route so that I can direct the many kind friends who are driving me to and from my appointments.....given my sense of direction, who knows where we might end up ;-/

It was lovely to have a visit from my baby brother and his lovely family on Monday. First time we've seen each other for about 18 months, so we had a lot to catch up with but inevitably much of the conversation revolved around my illness. Hopefully that will change as I come out the other side of the treatment and things start to return to a more normal state.

This afternoon I met a woman who had similar surgery to me just under two years ago and who had roughly the same amount of facial paralysis (although her eye was unaffected so I suspect she had lost less of the facial nerve than I had) but the really encouraging thing was that her face was almost completely back to normal, with no sign of facial palsy and all achieved by nerve regeneration, not through aesthetic surgery. I don't expect to have quite such a remarkable return to my old face, but it was nonetheless good to know that there is at least a chance of my face returning to some normality, even if that chance is perhaps pretty slim.

Oh, and I got my hair done - with a choppy fringe to hide some of my lopsided forehead. I rather like my new haircut but I made the mistake of saying on Facebook that I had had my hair cut and a couple of people asked me to post a photo. I just don't feel confident enough to do that on a public forum where people who don't know what's been going on can see it and wonder what on earth has happened to me. I know people mean well but it did throw me a bit, so I had to make some jokey response when really I just thought how horrible it was not to be able to put a picture of myself up on my profile. Oh well, you live and learn, don't you?

Radiotherapy starts next Wednesday, so I feel as if I am at the beginning of a new stage of this long, difficult and at times painful journey. Onwards and upwards, friends! At least I now have all of my lovely little family around me to support and love me.


  1. Ali, I read those comments on Facebook and my heart lurched for you. You're lovely in so many ways and your face is just one of them. Actually for me, being a covert Scot in sassenach clothing it's your beautiful voice that I could listen to all day! Sending you lots of love,

    Geves xxxxx

  2. Just popping in to see how you are. I bet you've had some mega-gassing sessions with Amy :D It'll be great having her back again. We'll all be thinking of you on Wednesday xxx

  3. If you have a tattoo, it needs to have something about Teenage Dirtbags too.

    Fingers and everything crossed for Wednesday x

  4. Ali, Have to agree with Geves, you have a lovely face but a lusheous voice.
    Best wishes for Wednesday.
    With you in spirit all the way.

  5. Hugs xx people mean well dont' they but sometimes it's just the wrong thing x we all do it.
    all the best for wednesday, have amy and AS started fighting yet ? :D

    love as always, Loon xxx

  6. Alison

    Next time Neil pisses you off, remind him that Michael is also very tattooable and also needs an "i" dotted.xx

  7. Hope today goes well Ali

  8. Thinking of you Ali. x