How do you celebrate your birthday when the previous year, you wondered if you would even still be alive to mark the occasion? Without wishing to sound too melodramatic, it is true that, for large parts of 2011, I wasn't sure if I would be around in a year's time and couldn't visualise anything after Christmas 2011. Now that my planning horizons are slowly extending, I am beginning, in a very small way, to think that maybe, just maybe, I can look further ahead than the next three-monthly check up.
On my birthday last year, I was on the descent towards my lowest point, both physically and emotionally. I remember feeling that I was surrounded by love and good wishes, with cards galore and very generous presents. I know that I was extremely tired and unable to go out to do anything to celebrate. Our good friends came round with a birthday cake, baked by Sally. I managed two mouthfuls before promptly (and painfully) bringing them back up. This is no reflection on the cake, but on the difficulties I was having at the time eating and keeping food down.
Fast forward a year and it's a different world. Birthday celebrations started the day before, with a trip to London with Amy. We spent hours in Oxford Street, shopping for clothes, then lunching before going to a matinee performance of Blood Brothers as my birthday present from her. I remember Adam going to see this when he was at school and he had thoroughly enjoyed it, so my expectations were high. I wasn't disappointed, although I think I got more out of it than Amy did! I just love musical theatre - there's something about the smell and atmosphere in any theatre, no matter its size or age, that makes me a little bit giddy. I think that this year I have been to the theatre more often than any other year of my life; last week's outing is the 6th time I have been to a performance this year.
I had texted my old uni friend, Fin, to see if he was able to meet up for a quick drink after the performance and luckily he was free, so we enjoyed some rather lovely champagne (thanks, Fin!) as an early birthday treat. Champagne (or Cava, or Prosecco) is still the only alcoholic drink I can in any way tolerate and enjoy, so it was a real treat for me.
And so to Friday, my birthday. Weeks, or even months, ago, when Neil asked what I wanted to do for my birthday, I decided that I wanted to go to the Paralympics. So that is what we did - the tickets had been pinned up on the notice-board in the kitchen for weeks, along with the travel-cards (how generous of London 2012 to provide travel-cards!) and I had stockpiled union flags, union flags on sticks to wave, headbands with union flags, union flag hats and - piece de resistance - a glittery union flag face tattoo! Oh yes, we were going to be exuberantly patriotic!!
What can I say about the day? We have been watching the Paralympics with increasing awe and sense of humility, after having watched as much of the main Olympics as we could. To be there, in the Olympic Park and then the Stadium was the most incredibly exciting experience. It's a magnificent structure, for a start - seeing it on television doesn't prepare you for the sense of wonder you feel when you walk into the Park and see that incredible stadium rising from the ground. To be in there, with the cauldron blazing, a real buzz of excitement all around and then to see these amazing athletes give their all made the hairs on the back of my neck stand up. I can think of few things more moving than seeing the determination of athletes who have not only dedicated themselves to training to become the best in the world, but who have done this while dealing with an impairment which has disabled them. I am finding it hard to think of the right words to describe how I felt when I watched these sportsmen and women. I just know that going to the Paralympics, with the three people I love most in the world, was the perfect way for me to celebrate being alive.
Okay, enough of the melodrama! What happened next? Well, it was time to take Adam back to university and see just what kind of accommodation he had sorted out for himself (he and the two girls he is sharing with had organised it all before the end of term and we hadn't had any involvement at all). With the memory of the shabby, neglected and insecure house in which Amy spent her second year in my mind, I was prepared to find it a bit on the run-down side of respectable. We were very pleasantly surprised to find that they have managed to get themselves a very nice flat, beautifully furnished and decorated, with very friendly landlords and everything they need (including a dishwasher - blimey!). I remember when we dropped Amy off at her house that I just burst into tears when we left, thinking of her having to live in what seemed to me a lot like a hovel, so I was absolutely delighted that Adam is living in such a nice place. They even have a balcony (tiny!) and two huge sofas which I am sure are plenty big enough for me to sleep on (hint, hint...). We had been going to take Adam with us to Glasgow to visit my mum, but as one of his flatmates was at the flat, we said to him to stay and settle in. Neil and I drove off to Glasgow to spend the afternoon with my mum.
What can I say about that? Well, we all know that dementia is a cruel illness. It takes away the person you know and leaves someone who looks like them. While mum has moments of lucidity, much of the time she is talking about a landscape which bears no relation to reality. Apparently she works at the home where she lives and shares a room with a woman who is 200 years old. She wouldn't have it that it is physically not possible to be 200 years old, but eventually grudgingly conceded that maybe she was only 160! There are flashes of the old mum still there, and she seemed to save her moments of clarity for when she was talking to Neil on his own, when I was out of the room for a few moments, which makes me wonder whether she is more together than she seems and is exaggerating for my benefit - who knows? There's no doubt that she has dementia and the path she is following is unsteady and unchartered, for us at any rate. I managed to establish that she had received the birthday presents I had left for her on a previous visit - despite her protestations to the contrary. All the items were hanging up in her wardrobe or on her shelf, so that was one mystery solved at any rate.
Neil and I then went back down to Cumbria and spent a couple of nights in the Lakes, staying in a bed and breakfast on a farm near Derwent Water. We did some walking on Sunday - can't remember the name of the hills we climbed but we spent a total of about six and a half hours walking at a reasonably steady pace. It was good to be out and exercising in the open air, watching the fell-runners (thin as whippets!) taking part in a local race.
And so back home yesterday. Neil and Amy are both at work today and I have been catching up on things for Facial Palsy UK (coming live to a charity box near you!) and doing the food shopping, laundry etc.
My life may seem somewhat mundane but you know what? That suits me just fine! All the time I can do ordinary things, the things we all take for granted, it means I am doing okay. It means I have energy and stamina. It means I have an interest in things. It means I can see a tomorrow.
Tuesday 11 September 2012
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
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
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