Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.
Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.
And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.
One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.
Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.
And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.
This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.
And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!
Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.
To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).
Family, friends, exercise - three constants in my life.
Friday, 5 October 2012
Tuesday, 11 September 2012
On birthdays, Paralympians and ordinary things...
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.
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.
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
Saturday, 28 July 2012
It's hit the shelves!
Very quick update - you remember I have hinted at a secret I couldn't tell you? Well, I can tell you now (if you haven't already read it on Facebook!). I am featured in an article in Prima magazine, the September issue (which is on the shelves now). I wrote to them and asked if they would run a feature on facial palsy and they asked me to write it - fee being paid to Facial Palsy UK charity - and sent a photographer round and everything! It's been lightly edited to suit their house-style but remains pretty faithful to how I wrote it.
I am so excited! Anything that raises awareness of facial palsy has got to be good news!
Rush out and buy it, folks!!
I am so excited! Anything that raises awareness of facial palsy has got to be good news!
Rush out and buy it, folks!!
Thursday, 19 July 2012
It's going to be an eye-opener....literally!
Quick update to share some breaking news with you all - you may remember that, during my original surgery in May 2011, the outer corner of my left eye was sewn to reduce the amount of cornea exposed. This was because blinking is very often compromised when the facial nerve is severed and reducing the eye surface reduces the risk of debris damaging the eye. However, my blinking is good and so my eye surgeon agreed to reopen the eye.
This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!
I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!
Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.
I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....
This was scheduled to happen in December 2012 (the surgeon has a loooooong waiting list!) but yesterday I had a phone call from the Queen Victoria Hospital to say that my surgeon has had a cancellation and I can have my surgery on Monday next week. Did I want it? Hell, yeah!
I am now vacillating between excitement, nervousness and apprehension, in almost equal measure! The reverse-tarsorrhaphy (to give it its unpronounceable - to me, anyway! name) will be carried out under local anaesthetic and sedation, which I am told will mean that I will be awake during the procedure but won't remember any of it. Most people would say that this is no different to my usual modus operandi :-) I blame the radiotherapy for my shocking memory nowadays - some of my brain cells have clearly been frazzled!
Tomorrow brings my check-up at the Royal Marsden - my first since April. I have found myself getting a bit anxious over the past couple of weeks, simply because three months feels like a long time to go without the reassurance of a specialist examination. I tell myself that the doctors wouldn't have let me go three months between check-ups unless they were certain that it is safe to do so, but the niggling doubts wriggle to the surface every so often. It's just the way it is. However, I take comfort from the fact that my dentist had a good feel around my head and neck only a fortnight ago and was happy with everything (she knows my medical history) so let's hope that's the case tomorrow as well.
I still can't tell you my exciting news, to which I alluded in my previous post. I will soon, honestly! Sorry to keep you in suspense....
Monday, 16 July 2012
How has your summer been? This is mine....
Over a month since my last post - it's not because nothing of note has happened, but more because I just keep forgetting to come on here and write! I have noticed that my memory has been worse since my radiotherapy last year, I suspect because some of my brain cells might have got fried (well, that's my excuse and I'm sticking to it....). I've also noticed that, since I'm not having to go to work during the day and therefore have plenty of time to do things, I have become very time-inefficient: what I used to be able to do in an hour or two at the end of a working day now takes me about five or six hours. I suppose that because I have plenty of time on my hands, my "tasks" have expanded to fill the time available (is that Parkinson's Law? where work expands to fill the time available?).
What has been happening since I last posted? I shall do a list - not necessarily in chronological order:
I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.
What has been happening since I last posted? I shall do a list - not necessarily in chronological order:
- we collected Adam from university and took advantage of being in the Lake District to travel up to Glasgow and see my mum. She was in hospital following a fall at her care home and quite confused when we first saw her, but she improved over the weekend. Her memory for the far past is good but she isn't always aware of who we are, or that we are grown-up rather than babies. She's now back at her care home. We will see her again in September when we return Adam to uni;
- Neil and I went to see Shrek - the Musical on Father's Day. Brilliant fun! Plenty for adults as well as children;
- I met up with two other women who have Facial Palsy. We all "know" each other through a Facebook group set up for people affected by FP and, as one of them was spending a few days in London en route from America to Transylvania (no, really!), and the other two of us were in the South East, we met up in London and wandered around the National Gallery before having lunch. It was good to be with other people affected by FP, rather than being the only one - safety in numbers! ;
- I'm still volunteering at Orpheus every week and loving it. We had a "Come Dine with Orpheus" day, when the students were allocated a country and had to plan a menu, write and price a shopping list, shop, prepare, cook and serve - we all ate together and there was a judging panel. The students loved it (and so did the staff and volunteers!). Term ends this week, so tomorrow is my last day with the students till September. I helped at the Open Day on Saturday, which required me to do lots of baking (photos on Facebook last week). Great day - I was able to watch some performances by the students, including a Street Dance show, and then took part in a dance workshop. I believe I am now able to "bust some moves", as they say....I also was lucky enough to be invited to the Orpheus Gala at Trevereux Manor, where I met Prince Edward (patron of the Orpheus Trust) and enjoyed some superb entertainment by the students and a singing group called Cantabile;
- My professional institute (CIPFA) held its annual conference in Liverpool and as I am once more an elected Council member, I went along to this. I was quite anxious beforehand: I missed Conference last year for obvious reasons and was pretty apprehensive about seeing so many people in one place, some of whom would know my story but wouldn't know what effect it had had on my face, some of whom had seen me so knew what to expect and many who would have no idea who I am and why my face looks different. I was so anxious that I developed a sicky headache the day before I was due to travel and ended up being sick on the morning of my journey, but my apprehension was unnecessary. Everyone was lovely to me, interested in how I was and pleased that I was involved again. It's odd, how I still find it difficult to go to new places, even though I know that my face looks much better than it did. I think the psychological impact of facial palsy is perhaps more difficult to deal with than the physical impact;
- I ran the British 10k in London, to raise funds for Orpheus. I thought I would do it in about 1.15 or 1.20, but surprised myself by running it in 1.03.48 - not bad, given I had done no running for three weeks, no gym for two weeks and had stuffed my little face while in Liverpool!;
I have some rather exciting news to share with you, but can't for another few weeks. It's not to do with weddings, births or moving house, so don't start thinking it's something like that! Just watch this space and all will be revealed.
Monday, 11 June 2012
I'm still here!
Rumours of my disappearance or demise have been greatly exaggerated - the fact that I haven't posted on this blog for a month could possibly have led people to wonder what was going on, but the truth is I have been (a) busy, (b) on holiday and (c) busy, in that order!
I won't make this a really long blog post, detailing all the minutiae of my life over the last month, so this will be in the nature of an edited highlights entry!
Holiday was fabulous - Neil and I went to Sicily, a part of Italy we had never been to but were keen to visit, mainly because, as well as having a fascinating history, it has amazing mountains (we do like our mountains!). We flew into Catania and spent two weeks just outside a small hillside town called Francavilla, enjoying the peace and tranquillity and some climbing and walking. It wasn't a touristy place at all, which suits us fine - I've never understood why people want to travel to another country and then try to recreate their usual lifestyle, with diet, drink and tv they would have in the UK. Surely one of the points of going abroad is to experience different lifestyles and cultures? Otherwise it's just like being at home but with better weather and a chance to shout and point at things in a patronising manner because those "Johnny Foreigners" don't understand English....but I digress! Let's return to our holiday.
Our friend Jonathan joined us for 12 days - we do a lot of walking and climbing with him (he was part of our Kilimanjaro group 6 years ago) - and during the time he was with us, we did two preparation climbs and some small walks so that we were as ready as we could be for the Main Event - the ascent of Mount Etna! Etna is an active volcano and was particularly active during March of this year, so we were none too sure before we went to Sicily whether we would be able to get onto the mountain or not. Luckily, it's calmed down, although there are plumes of smoke rising from it every day - a wonderful sight which we could see from our villa every day. There's something so elemental and powerful about this manifestation of nature - not influenced by mankind in any way but controlled by something so much more forceful and unambiguous.
We set out to climb Etna on Neil's birthday - his choice of birthday treat! Up at 5 in the morning, breakfast of pasta, then a drive to the Refugio from where we began our climb. There are tours of Mt Etna, where you get taken up in a 4x4 to the Observatory and can do a short (100 metres or so) walk to a viewpoint, but we wanted to do it the proper way, using our own momentum to get up there. Boy, was it hard work! We walked onto the mountain at 7 a.m and arrived back at our car at 7.10 p.m - just over 12 hours of tough uphill and downhill walking, with a total of about 1 hour in breaks. We started off in lava dust, then struggled in lava shale and finally walked through 3 or 4 metre high banks of snow and ice - a strange experience, seeing smoke and steam rising from the earth, while surrounded by snow! Etna is 3,300 metres high (three times the height of Ben Nevis, I think) and the most ascent I have done in one day - while Kili is considerably higher, at 5895 m, we did it over several days, to acclimatise to the altitude. Tough, tough, tough - two hours into the climb, I honestly thought I was going to have to turn back, but Neil and Jonathan relieved me of a couple of the heavier items in my rucksack and I remembered the recuperative powers of chocolate and was able to carry on! It's amazing how a few squares of hazelnut chocolate can perk you up.
I have to say that climbing Etna is the toughest climb I have ever done (and before you think I am just a girly wuss, Neil and Jonathan agree it is a blimming tough climb!) and I discovered that 12 hours of solid, hard activity is pushing my boundaries a bit too far - during the night, after our climb, I woke up with a thumping headache and was sick, then felt headachey and listless all the next day. I suspect that 12 hours was about 2 or 3 hours too much for me at this stage, but you have to test the limits, don't you?
The remainder of the holiday included plenty rest, relaxation, reading, eating and enjoying Italian history and architecture. There's a lovely unspoiled feel about the part of Sicily we were in - people living a pretty unsophisticated life, working on the land, no airs and graces. We loved it - everyone was really friendly and, because no one really spoke much English, we were able to practise our (very poor) Italian and, in so doing, give them a bit of a laugh! We got mistaken for French or German people quite a lot, so I had some practice conversing in those languages too - good for my lazy brain! We dropped Jonathan off at Catania airport at the end of his stay and then Neil and I had another couple of days at an Agriturismo, during which we visited Siracusa and Noto - both more popular with tourists and therefore busier. There's just such an embarrassment of riches there, with the history, remains of Greek and Roman amphitheatres, wonderful churches and civic buildings, all topped off with wonderfully friendly people. We loved it (well, except for driving into Catania, where we experienced just the worst, most inconsiderate, dangerous driving we have come across - even by Italian standards, it was dreadful!).
Since coming home, I have struggled a bit due to the appalling weather. My mood is always affected by bad weather (that's why I am such a miserable ratbag over the winter months) and this pathetic excuse for a summer is really getting me down. However, I have resorted to my usual remedy of exercise and that seems to be helping.
I can't end this post without remarking on the fact that, while we were away, it was the anniversary of my surgery. Given how I felt this time last year, I am even more in awe of the resilience of the human body and the work of the NHS - just over a year to the day of having pretty intense surgery, with all the subsequent treatments and side-effects, I was standing at the top of Mt Etna. That's pretty good, I think! It's not just the physical stamina and energy, but the fact that I feel much better about how my face looks and was happy having photographs taken and didn't feel at all self-conscious about how I looked. I think that's real progress.
Oh, and I also featured in our local newspaper, which ran an article about my London Marathon exploits :-)
I won't make this a really long blog post, detailing all the minutiae of my life over the last month, so this will be in the nature of an edited highlights entry!
Holiday was fabulous - Neil and I went to Sicily, a part of Italy we had never been to but were keen to visit, mainly because, as well as having a fascinating history, it has amazing mountains (we do like our mountains!). We flew into Catania and spent two weeks just outside a small hillside town called Francavilla, enjoying the peace and tranquillity and some climbing and walking. It wasn't a touristy place at all, which suits us fine - I've never understood why people want to travel to another country and then try to recreate their usual lifestyle, with diet, drink and tv they would have in the UK. Surely one of the points of going abroad is to experience different lifestyles and cultures? Otherwise it's just like being at home but with better weather and a chance to shout and point at things in a patronising manner because those "Johnny Foreigners" don't understand English....but I digress! Let's return to our holiday.
Our friend Jonathan joined us for 12 days - we do a lot of walking and climbing with him (he was part of our Kilimanjaro group 6 years ago) - and during the time he was with us, we did two preparation climbs and some small walks so that we were as ready as we could be for the Main Event - the ascent of Mount Etna! Etna is an active volcano and was particularly active during March of this year, so we were none too sure before we went to Sicily whether we would be able to get onto the mountain or not. Luckily, it's calmed down, although there are plumes of smoke rising from it every day - a wonderful sight which we could see from our villa every day. There's something so elemental and powerful about this manifestation of nature - not influenced by mankind in any way but controlled by something so much more forceful and unambiguous.
We set out to climb Etna on Neil's birthday - his choice of birthday treat! Up at 5 in the morning, breakfast of pasta, then a drive to the Refugio from where we began our climb. There are tours of Mt Etna, where you get taken up in a 4x4 to the Observatory and can do a short (100 metres or so) walk to a viewpoint, but we wanted to do it the proper way, using our own momentum to get up there. Boy, was it hard work! We walked onto the mountain at 7 a.m and arrived back at our car at 7.10 p.m - just over 12 hours of tough uphill and downhill walking, with a total of about 1 hour in breaks. We started off in lava dust, then struggled in lava shale and finally walked through 3 or 4 metre high banks of snow and ice - a strange experience, seeing smoke and steam rising from the earth, while surrounded by snow! Etna is 3,300 metres high (three times the height of Ben Nevis, I think) and the most ascent I have done in one day - while Kili is considerably higher, at 5895 m, we did it over several days, to acclimatise to the altitude. Tough, tough, tough - two hours into the climb, I honestly thought I was going to have to turn back, but Neil and Jonathan relieved me of a couple of the heavier items in my rucksack and I remembered the recuperative powers of chocolate and was able to carry on! It's amazing how a few squares of hazelnut chocolate can perk you up.
I have to say that climbing Etna is the toughest climb I have ever done (and before you think I am just a girly wuss, Neil and Jonathan agree it is a blimming tough climb!) and I discovered that 12 hours of solid, hard activity is pushing my boundaries a bit too far - during the night, after our climb, I woke up with a thumping headache and was sick, then felt headachey and listless all the next day. I suspect that 12 hours was about 2 or 3 hours too much for me at this stage, but you have to test the limits, don't you?
The remainder of the holiday included plenty rest, relaxation, reading, eating and enjoying Italian history and architecture. There's a lovely unspoiled feel about the part of Sicily we were in - people living a pretty unsophisticated life, working on the land, no airs and graces. We loved it - everyone was really friendly and, because no one really spoke much English, we were able to practise our (very poor) Italian and, in so doing, give them a bit of a laugh! We got mistaken for French or German people quite a lot, so I had some practice conversing in those languages too - good for my lazy brain! We dropped Jonathan off at Catania airport at the end of his stay and then Neil and I had another couple of days at an Agriturismo, during which we visited Siracusa and Noto - both more popular with tourists and therefore busier. There's just such an embarrassment of riches there, with the history, remains of Greek and Roman amphitheatres, wonderful churches and civic buildings, all topped off with wonderfully friendly people. We loved it (well, except for driving into Catania, where we experienced just the worst, most inconsiderate, dangerous driving we have come across - even by Italian standards, it was dreadful!).
Since coming home, I have struggled a bit due to the appalling weather. My mood is always affected by bad weather (that's why I am such a miserable ratbag over the winter months) and this pathetic excuse for a summer is really getting me down. However, I have resorted to my usual remedy of exercise and that seems to be helping.
I can't end this post without remarking on the fact that, while we were away, it was the anniversary of my surgery. Given how I felt this time last year, I am even more in awe of the resilience of the human body and the work of the NHS - just over a year to the day of having pretty intense surgery, with all the subsequent treatments and side-effects, I was standing at the top of Mt Etna. That's pretty good, I think! It's not just the physical stamina and energy, but the fact that I feel much better about how my face looks and was happy having photographs taken and didn't feel at all self-conscious about how I looked. I think that's real progress.
Oh, and I also featured in our local newspaper, which ran an article about my London Marathon exploits :-)
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