Showing posts with label confidence. Show all posts
Showing posts with label confidence. Show all posts
Tuesday, 1 January 2013
And so it's 2013....
January 1st. A new month, a new year.
Last year, I wanted to draw a line under 2011 and forget - or at least try to forget - all the horrible experiences of the year. My little family and I had suffered much over the previous 8 months and I hoped that going to bed (before midnight) and waking up in a brand new year would mean we could leave all that nasty stuff behind us. Well, we all know that there were some ups and downs during 2012, don't we? - starting off with the scare in January (yes, I couldn't even manage one month without experiencing that sinking feeling when the consultant finds something that makes him worried and I trundle down the path of scan - wait -result). Thankfully, it was just a scare, but it did make me realise a bit more emphatically that I can't relax and assume that my body is now behaving properly.
February brought my PET CT scan and confirmation that I appear to be in remission - usual caveats applied, obviously! That took a while to sink in, as I was out of the habit of dealing with good news about my health....however, finally I accepted it and felt that I could move on to focus on dealing with the facial palsy resulting from my surgery.
Good friends helped greatly during the year - Fin, my old university friend, really helped my confidence by taking me on a star-studded extravaganza with a night at the Olivier Awards ceremony. Who doesn't love a chance to dress up in a posh frock and sip with people you are used to seeing on the television, stage or pages of a newspaper? My local and church friends, my running friends, my wonderful school friends, other friends - all gave unstintingly of their time, support and advice to help me adjust to being in remission and learning to be confident again, bit by bit, sometimes one step forward and two steps back. And of course - my little family. Neil, Amy and Adam continued to help me every day, in small and big ways. Whether it's been taking me to hospital for my eye surgery and further check-ups, coming shopping with me, planning and taking me on wonderful holidays or making me cups of tea - they've done it all, quietly and for no other reason than that they care for me and want me to be well and happy.
So I start 2013 feeling and looking much better than at this time last year. I have been out for a run this morning, as part of my plan to be as fit and healthy as I can be. When I think how scrawny and lacking in energy I was this time last year, I can see how much progress I've made. My face has improved and (hopefully) will continue to do so, although it's all very marginal. I have more eye surgery in two days' time, on the 3rd, when I shall have my eyelid bling repositioned and an eyelid lift, no less! I shall have a fortnight of looking as if I have gone several rounds with a prize heavyweight boxer, with bruising, swelling and those little strip stitches that fall off before they're supposed to. This will all be accompanied by some pain and discomfort, but hopefully by the time all the swelling has gone down, my eye won't look so heavy and it will be more like my right eye. Fingers crossed, anyway!
I've still got a raft of appointments in store. My next oncology check-up will be in just over a fortnight and I can feel the stirrings of anxiety as I get closer to the date. I try to tell myself that it's silly to feel like this and that there's no reason to think that the oncologist will find anything wrong, but there's still that nagging doubt and worry. I can sometimes go whole days without actually thinking about having had cancer, but I'm not yet at the stage where enough time and distance have passed that I can relax about it. It still hovers in the back of my mind, waiting to sneak up and catch me when I don't expect it. I'm sure this will get better but not quite yet.
And finally, on this day, I remember Anne, a friend from university who was married to another friend, Fin. A lovely, kind, intelligent, funny and beautiful girl, who died of cancer exactly 10 years ago today. I know Fin misses her every day. Spare a thought for her and for Fin.
Here's to 2013 - may it bring you all you wish yourself.
Friday, 16 November 2012
The one where we become official!!!
Sometimes weeks go by with nothing special happening, no events worthy of note, just ordinary, everyday life - nothing wrong with that! In fact, ordinary, everyday life is precious to me because I wasn't sure, during my darkest, illest days last year, whether I'd experience it again. Even today, I'm honestly not sure how many ordinary, everyday times I have ahead of me, but that's not something to dwell upon, is it?
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.
You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.
First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.
How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.
I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!
Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.
However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.
The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.
All of us today appreciated the support and love of our families and friends. I hope you all know this!
Thursday, 8 November 2012
Old friends, new charities and same old anxieties!
I have often been struck by the way in which my daughter and her friends, when teenagers, and indeed many teenaged girls, are so much more affectionate and open in their feelings than I remember being when I was at school. Lots of declarations of "Love you" and hugs, kisses and more hugs seem to be the order of the day when greeting each other or saying goodbye nowadays. When I was their age, we didn't even hug each other, let alone give voice to any feelings of love or affection. Why was that? Were we worried that we would be mocked for being open in our feelings? Worried that perhaps our words might be misinterpreted and our sexuality questioned? - this was the 70s, remember, when the common expectation was that everyone was heterosexual and we weren't confident enough to want to be thought of as somehow different? Whatever the reason, we just didn't do anything more openly affectionate than maybe writing "Loadsaluv" in a Christmas or birthday card, as if spelling it in a jokey way meant it couldn't possibly be viewed as anything other than a whimsical, throwaway sign-off.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.
These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.
Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.
My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.
This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.
Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?
http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.
Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.
Signing off now, with my usual thanks and love to the people who help me get through every day and every week.
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, 26 March 2012
On make-up, confidence and Good Things....
Well, my positive streak continues, despite my thinking that the bubble was bound to burst last week - after all, I don't normally get a prolonged spell of nice things and good news, do I? Certainly not over the past 12 months!
Last Friday, I went to the Ideal Home Show with my friends Sally and Sue. I hadn't been there for a few years and we decided to make it a bit of a "girls' day out", even though we're no longer girls - ah, well! We had a really lovely, relaxed day - looked round a couple of the show homes, wandered round sampling cheese and sausages, plenty of tea breaks etc and a champagne break, since Sue had found out she's going to be a grandmother so we had a little celebration. Sadly, I was only able to have a couple of mouthfuls and then poured the rest into their glasses - I am a total lightweight when it comes to alcohol nowadays, even my beloved fizzy. It's not a problem, really, since I don't need alcohol to have a good time - and itmakes me a very cheap date!
Neil and I had friends coming round for dinner that evening, so we left the Show about half three and I was home by just after five o'clock. Luckily <taps nose> I had prepared pudding the previous evening and planned a cold starter, so it was a question of assembling the main course (Chicken Basque from the wonderful St Delia) and bunging it into the oven. I love it when you can just throw everything into one bit casserole dish and not have to faff about with vegetables, side dishes, etc, especially when time is a wee bit tight! The friends we had round were from Neil's cycling club, with their wives, and we had a lovely evening - good chat, the food seemed to go down well, lots of laughter. I was a wee bit tired after a day out (although we strolled around the IHS, it was still quite tiring for me because I was doing a lot of chatting, which always wears me out) but once we sat down at the table, Neil did all the fetching and carrying and our friends helped clear the table at the end of the evening, so I was able to sit and take it easy. It's nice to be entertaining people again - some small recompense for all the support I've had from friends over the past year.
Saturday dawned sunny and warm. Neil went out for a bike ride and I went out for a run on the Downs. I managed six miles (six slow miles!), which is the farthest I've run in over a year, so I was really happy with that - just glorious to be out there in the sunshine, running through the trees and enjoying the Spring air. The afternoon was spent doing laundry, cleaning windows (drawback of sunshine is that every smear or speck of dust is really magnified...) while Neil mowed the lawn and then started building the furniture for Amy's bedroom - ah yes! the joys of flatpack IKEA chests of drawers.....we know how to live!
Sunday brought church - I had signed up to do a reading, which I still find a bit challenging, since it involves standing at the front of the church with everyone looking at me, but I reminded myself that I was amongst friends and the important thing was to read. My looks are immaterial to this. It was fine and I had decided to download the text onto my iPad and use that to read from, instead of taking a Bible or printing out the text. This provided a source of interest to people afterwards, when we were having tea, as they wanted to have a look at it and see how it all worked. One of my good and lovely friends in the congregation came up to me afterwards and said that, when I was standing at the front, she could hardly see any difference between the two sides of my face, because there's been some good recovery - as always, I see the difference whereas other people see the similarities!
The rest of Sunday was more flatpack assembly (Neil), more cleaning and tidying (me) and then a relaxing evening, although I did have to review Adam's English essay (just for spelling and grammar, logical structure, etc) before he handed it in today. I also managed to spark a debate on Facebook because I got annoyed about the use of 's to make a plural, instead of just s - while most people seemed to support what I said, there was a certain level of dissent, which made for a lively discussion! I do think it's important to write and spell correctly and I just don't accept that it's somehow less important in informal communications like emails (dyslexia and vision problems excepted). I am also fed up with being told I am somehow a boring, anally-retentive member of the Grammar Gestapo for thinking that grammar and spelling are important. Hey ho, that's the way it goes, I guess - we will end up breeding a generation of people who think that the word "have" is spelt "of" and it becomes the (accepted) norm; meanwhile, people who think like I do just give up.....
And so to today - a little run this morning and then off to the Marsden this afternoon for my Look Good, Feel Better workshop. This is the charity arm of the cosmetic and beauty industry - they run regular workshops for women who are undergoing, or have been through, treatment for cancer. Many, of course, have lost their hair as a result of chemo and there are other side-effects which change the way a lot of women cancer patients feel about themselves and the way they look. For myself, I think you all know how much the facial palsy has affected my confidence in many ways - not just what I look like (I still get a shock when I look in the mirror, because I somehow don't expect to look like that), but my confidence in my ability to cope in social situations, being understood when I speak (especially on the phone), even driving - and as for feeling feminine, forget about it. It's a bit like the feeling you get when you're pregnant, that you stop being a woman (ironically, given that being pregnant is the best visible demonstration of being a woman) but become a "body" instead. I have felt a bit like that - I stopped being a woman but became a person who had this nasty little invader spreading through my body. Losing confidence in your looks (and let's be honest, I was never model material to begin with, but at least I could scrub up reasonably well) means that it's well nigh impossible to feel that you're making the best of yourself in social situations like parties, weddings, even just dinner parties. I haven't bothered with make-up because I've felt there's no point in it. I'd rather just skulk around and not draw attention to my face - admittedly, I have improved from my worst point, when my face was at its worst, but I still don't relish the thought of being the focus of people's attention and being looked at and I still feel uncomfortable having my photo taken. This self-confidence issue is one I do struggle with (I know I'm not alone in this and that it affects many people who haven't got facial palsy).
However, today, although I was the only person at the workshop who had facial palsy, I had a little bit of a breakthrough - yes, dear readers, I put on make-up and was pleased with the result. I can see the improvement, I got lots of advice about how to deal with the difference in the size of my eyes and I feel more able to try and make myself look a bit more presentable. This is not to say that I think I need to wear make-up every day to face the world, but it's nice to know that I can make more of myself when I want to. We are going to a family wedding on Saturday and I can put some slap on and know that it won't make me look worse - there's a reason why make-up is sometimes called "war paint" - it's another weapon I can use to arm myself before I face the public. I can also put my new-found knowledge into practice on Wednesday, when I have a very exciting day planned - a day trip to Bath on the Orient Express, no less! My hairdresser is getting married in Italy in July and for her "hen do", six of us are going to Bath, with a champagne breakfast on the way there and dinner on the return journey. It is going to be amazing - I love trains and especially the opulence and glamour of luxury trains like the Orient Express. My make-up workshop has been very timely!
Back to the Orpheus tomorrow for another day of volunteering - looking forward to it immensely! Amy is back from Marrakech (I went straight from the Marsden to pick her and her friend up from Gatwick) so I shall see her there, although she is going in later than I am as she has a local appointment first. Next time I am there (after the Easter break), I am going to get Amy to drive me there in the morning and then I can run home. It's about five miles cross-country, so it will be a good little bit of exercise.
So, to summarise, even if I don't Look Good (Look Acceptable, I think), I certainly Feel Better. My confidence has had a real boost today and my positive streak continues - let's hope it lasts!
Last Friday, I went to the Ideal Home Show with my friends Sally and Sue. I hadn't been there for a few years and we decided to make it a bit of a "girls' day out", even though we're no longer girls - ah, well! We had a really lovely, relaxed day - looked round a couple of the show homes, wandered round sampling cheese and sausages, plenty of tea breaks etc and a champagne break, since Sue had found out she's going to be a grandmother so we had a little celebration. Sadly, I was only able to have a couple of mouthfuls and then poured the rest into their glasses - I am a total lightweight when it comes to alcohol nowadays, even my beloved fizzy. It's not a problem, really, since I don't need alcohol to have a good time - and itmakes me a very cheap date!
Neil and I had friends coming round for dinner that evening, so we left the Show about half three and I was home by just after five o'clock. Luckily <taps nose> I had prepared pudding the previous evening and planned a cold starter, so it was a question of assembling the main course (Chicken Basque from the wonderful St Delia) and bunging it into the oven. I love it when you can just throw everything into one bit casserole dish and not have to faff about with vegetables, side dishes, etc, especially when time is a wee bit tight! The friends we had round were from Neil's cycling club, with their wives, and we had a lovely evening - good chat, the food seemed to go down well, lots of laughter. I was a wee bit tired after a day out (although we strolled around the IHS, it was still quite tiring for me because I was doing a lot of chatting, which always wears me out) but once we sat down at the table, Neil did all the fetching and carrying and our friends helped clear the table at the end of the evening, so I was able to sit and take it easy. It's nice to be entertaining people again - some small recompense for all the support I've had from friends over the past year.
Saturday dawned sunny and warm. Neil went out for a bike ride and I went out for a run on the Downs. I managed six miles (six slow miles!), which is the farthest I've run in over a year, so I was really happy with that - just glorious to be out there in the sunshine, running through the trees and enjoying the Spring air. The afternoon was spent doing laundry, cleaning windows (drawback of sunshine is that every smear or speck of dust is really magnified...) while Neil mowed the lawn and then started building the furniture for Amy's bedroom - ah yes! the joys of flatpack IKEA chests of drawers.....we know how to live!
Sunday brought church - I had signed up to do a reading, which I still find a bit challenging, since it involves standing at the front of the church with everyone looking at me, but I reminded myself that I was amongst friends and the important thing was to read. My looks are immaterial to this. It was fine and I had decided to download the text onto my iPad and use that to read from, instead of taking a Bible or printing out the text. This provided a source of interest to people afterwards, when we were having tea, as they wanted to have a look at it and see how it all worked. One of my good and lovely friends in the congregation came up to me afterwards and said that, when I was standing at the front, she could hardly see any difference between the two sides of my face, because there's been some good recovery - as always, I see the difference whereas other people see the similarities!
The rest of Sunday was more flatpack assembly (Neil), more cleaning and tidying (me) and then a relaxing evening, although I did have to review Adam's English essay (just for spelling and grammar, logical structure, etc) before he handed it in today. I also managed to spark a debate on Facebook because I got annoyed about the use of 's to make a plural, instead of just s - while most people seemed to support what I said, there was a certain level of dissent, which made for a lively discussion! I do think it's important to write and spell correctly and I just don't accept that it's somehow less important in informal communications like emails (dyslexia and vision problems excepted). I am also fed up with being told I am somehow a boring, anally-retentive member of the Grammar Gestapo for thinking that grammar and spelling are important. Hey ho, that's the way it goes, I guess - we will end up breeding a generation of people who think that the word "have" is spelt "of" and it becomes the (accepted) norm; meanwhile, people who think like I do just give up.....
And so to today - a little run this morning and then off to the Marsden this afternoon for my Look Good, Feel Better workshop. This is the charity arm of the cosmetic and beauty industry - they run regular workshops for women who are undergoing, or have been through, treatment for cancer. Many, of course, have lost their hair as a result of chemo and there are other side-effects which change the way a lot of women cancer patients feel about themselves and the way they look. For myself, I think you all know how much the facial palsy has affected my confidence in many ways - not just what I look like (I still get a shock when I look in the mirror, because I somehow don't expect to look like that), but my confidence in my ability to cope in social situations, being understood when I speak (especially on the phone), even driving - and as for feeling feminine, forget about it. It's a bit like the feeling you get when you're pregnant, that you stop being a woman (ironically, given that being pregnant is the best visible demonstration of being a woman) but become a "body" instead. I have felt a bit like that - I stopped being a woman but became a person who had this nasty little invader spreading through my body. Losing confidence in your looks (and let's be honest, I was never model material to begin with, but at least I could scrub up reasonably well) means that it's well nigh impossible to feel that you're making the best of yourself in social situations like parties, weddings, even just dinner parties. I haven't bothered with make-up because I've felt there's no point in it. I'd rather just skulk around and not draw attention to my face - admittedly, I have improved from my worst point, when my face was at its worst, but I still don't relish the thought of being the focus of people's attention and being looked at and I still feel uncomfortable having my photo taken. This self-confidence issue is one I do struggle with (I know I'm not alone in this and that it affects many people who haven't got facial palsy).
However, today, although I was the only person at the workshop who had facial palsy, I had a little bit of a breakthrough - yes, dear readers, I put on make-up and was pleased with the result. I can see the improvement, I got lots of advice about how to deal with the difference in the size of my eyes and I feel more able to try and make myself look a bit more presentable. This is not to say that I think I need to wear make-up every day to face the world, but it's nice to know that I can make more of myself when I want to. We are going to a family wedding on Saturday and I can put some slap on and know that it won't make me look worse - there's a reason why make-up is sometimes called "war paint" - it's another weapon I can use to arm myself before I face the public. I can also put my new-found knowledge into practice on Wednesday, when I have a very exciting day planned - a day trip to Bath on the Orient Express, no less! My hairdresser is getting married in Italy in July and for her "hen do", six of us are going to Bath, with a champagne breakfast on the way there and dinner on the return journey. It is going to be amazing - I love trains and especially the opulence and glamour of luxury trains like the Orient Express. My make-up workshop has been very timely!
Back to the Orpheus tomorrow for another day of volunteering - looking forward to it immensely! Amy is back from Marrakech (I went straight from the Marsden to pick her and her friend up from Gatwick) so I shall see her there, although she is going in later than I am as she has a local appointment first. Next time I am there (after the Easter break), I am going to get Amy to drive me there in the morning and then I can run home. It's about five miles cross-country, so it will be a good little bit of exercise.
So, to summarise, even if I don't Look Good (Look Acceptable, I think), I certainly Feel Better. My confidence has had a real boost today and my positive streak continues - let's hope it lasts!
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