Wednesday, 5 September 2012

One year on....

Tomorrow, it will be exactly a year since my last radiotherapy session. The timing was both good and bad: I finished treatment the day before my birthday  this was good, as it meant I didn't have a trip to hospital on the day itself, but bad because by this stage in my treatment, I was feeling pretty dire and didn't have the energy, inclination or appetite (either physical or emotional) to enjoy the day!

And now? Well, what a difference a year makes, truly. I've had no further treatment since my last r/t session and all my check-ups since February, when I was told that I was in remission, have confirmed that I remain so. After a continuing dip in my health following the end of r/t (all to be expected and very normal), I have slowly regained strength, both physically and mentally. While I don't think I am yet back at the levels of stamina - again, both physical and mental - as I was before I became ill, I am very much on the way. A normal week for me now will include three or four sessions at the gym, at least one run outside of these sessions, a day volunteering at Orpheus, work for Facial Palsy UK and the normal demands of running a home - I don't think that's too bad, given where I was a few months ago.

Yesterday, I had my second session of Botox around my mouth. This helps relax the over-compensating nerves/muscles and improves symmetry of my smile. Finally, when I do an open-mouth smile, you can see some of my teeth on the left side of my face! They have been hidden from view for over a year, really, so it's a very visible sign of improvement that I can now glimpse them again. One of the risks for people with facial palsy is dental problems, because of the difficulty in keeping the teeth clean in a mouth that doesn't work properly - this risk is exacerbated for me because of having had radiotherapy, which weakens the teeth - so I am very diligent in my teeth cleaning and I am pleased to say that, despite having been hidden from daylight for so long, my newly exposed teeth look pretty good! <gleam>

During my talk with the plastic surgeon yesterday, we once more discussed the likelihood of surgery to my face next year and I think we are both agreed that if I continue at my current rate of progress, the chances are that the original surgery he was thinking of will have such a marginal effect that it won't justify the trauma and risk. He says that I am making good progress, which is encouraging because sometimes, when I have my little dark nights of the soul and wonder what the point is in doing all these facial exercises and zapping my chin every day with my little trophic stimulator, I need to remember that nerve recovery in the face is notoriously slow and that improvements will be microscopic but cumulative. My surgeon showed me photos yesterday of how I looked when I had my first consultation with him, in October last year, and I was surprised by the difference. Perhaps I had blanked out just how bad my face looked when my palsy was at its worst - and of course, last October I was at my lowest ebb both physically and mentally, which would possibly have manifested itself in how I presented myself to be photographed. So yes, it is worth continuing with my regime because it is making a difference, albeit slowly.

I do still have these periods where I feel down about what's happened and I expect this will continue for some time, but they seem to be getting more infrequent and I have good coping strategies (normally they involve putting on my running gear and getting out on the Downs!). I am still at the stage where any twinge or unusual ache makes me worry that cancer has decided to pay me another visit, but I try to be rational and sensible about it, rather than go racing off to the GP with every ache or pain! I had my routine mammogram last week and I am reminding myself that any woman would be anxious about the results, not just me! I was a bit surprised that the fact I have had two PET CT scans in the past year didn't negate the need for a mammogram, but I assume that it's a different examination looking for different things.

So, what am I doing to mark the 1 year anniversary? My mask, which I had to wear every day for my radiotherapy and which is a ghoulish reminder of my treatment, has for some months been relegated to our basement. To those visitors who were forced to look at it, when I would present it with a dramatic flourish, I apologise. Clearly I was just trying to get some extra sympathy :-). Now I have some distance, both temporally and emotionally, between the treatment and today, I don't have to demonstrate or explain what happened quite so much. This is good. It means I have stopped dwelling on it. Tomorrow, I am going to Oxford Street with Amy to do some shopping and then she is taking me to see the matinee performance of Blood Brothers, which I have been wanting to see for ages - when I think of a year ago, and how genuinely ill and (a)pathetic I was, the prospect of spending a day in London would have been unimaginable.

On Friday, we are going en famille to the Paralympics - we have tickets for the evening athletics session in the Stadium and we are all desperately excited about it. I can think of no better way to spend my birthday than with the people I love most in the world, watching the amazing achievements of athletes who have worked to become the best in the world while dealing with whatever disability life has given them - how humbling and awe-inspiring are they?

Thank you for reading :-D


  1. You've come an amazing long way Ali and are a true reminder for me of the power of a positive mind and the benefits of exercise, amongst other things. May your road of recovery continue to be a fabulous healing journey. xx

  2. Ps. I just noticed your side blurb. You are far from ordinary!

  3. Lovely blog entry by a truly lovely person. Awesome :o)
    Take care x

  4. The Paralympians definitely serve to make me feel humble, I know that. I hope you have a great time tomorrow. I'm excited at having a ticket on the Mall for the parade on Monday. Happy Birthday too xxxx