The end of a blog...

Well, seven months or thereabouts since I last updated this and several people have asked if I am going to post again. A couple of people have even said they were worried that the lack of posting meant that news was less than good, so I apologise for causing any worry -I am still here, obviously!

The real reason I haven't posted in such a long time is that I feel I am in a different place now to where I was when I first set up the blog and for the 18 months or so afterwards. It helped me share news, it helped me offload and it helped me feel I was in control, even in a tiny way, of what was happening with me. And boy, did it help me! I think that at times it was the only thing that kept me on the right side of sanity and the calm side of anxiety. It was the only thing that let me share how I really felt, my deepest fears and worries, my love for my family and friends, and my deep, deep appreciation for our amazing NHS and all the health care professionals who have helped me through this. The comments left by friends helped me enormously ( even though they often made me cry!).

Where am I now? I have done some project work, so that's a definite return to normal. I am continuing to volunteer at the wonderful Orpheus Centre. I have been on holiday and am about to go and climb a blooming huge mountain in the French Alps. I have been going to the gym regularly, walking a lot and running a little. I am almost at the point where I think my voice may be reliable enough that I can return to the choir I had joined before I became ill. I am interested in what is going on around me. I am involved with Facial Palsy UK and embracing opportunities to publicise it in magazines or other media (obviously, this excludes the Daily Fail!!). I am busy, active and outward-looking. In recent days, I have been reading back on my blog and, while I recognise the scared, weak, angry and despairing woman who wrote those words, I can see how different I am now.

That doesn't mean that everything is wonderful every day - but, let's face it, is it like that for anyone? Really? I still get anxious before my oncology check-ups. I still worry about unexpected aches or anything slightly different in my anatomy. I still - even now - feel self-conscious about my face but I also know that I look so much better than when this all first happened or even than I looked a year ago.

So.....is there any need for me to continue with this blog? I think not. I think it has served its purpose. It helped me hugely and, I hope, it has perhaps helped other people who might have read it. Quite a lot of people have said I should try and get it published and maybe that is something I should have a look at. Tell me, what do you all think? Should I try and publish this somehow? Would it help others at all? Or would it just be pure vanity publishing? :-D

I end this entry - and this blog - by saying THANK YOU to every one of you who took the time and trouble to read this, to comment, to think of me, to hold me in your thoughts or prayers, to think of my family when we were going through our worst time.

I am still here. I am living the life I want to live. Life is good.

Hospital 1, hospital 2 and hospital 3...

As I write this, there's snow on the ground. Not a lot of snow, but enough to disrupt the transport system, it would seem. I don't remember my school closing because of snow when I was growing up (in a place much colder and with harsher winters than the South-East of England) - am I viewing the past through the rosy lenses of nostalgia? Were the summers endlessly long, always sunny and full of laughter? Maybe not, but perhaps my old school friends might remember if our school stayed open whatever the weather - I seem to recall the only days the school was closed was when the teachers went on strike!!

The snow started falling on Friday, as I was driving to the Marsden for my three-monthly check-up. Anxious enough about the check-up, as always, the anticipation of poor weather and difficult driving conditions heightened my nerves. The hospital car park was pretty empty and I did wonder if my check-up would go ahead or whether the doctors would have struggled to get in and I might be told to return another day - not a prospect I relished, as I still have to psyche myself up before the appointment and I would have to go through that process all over again. Luckily for me, however, the Head and Neck clinic doctors had managed to get in, although a lot of patients were phoning in to say they couldn't travel to hospital and the waiting room was much emptier than usual!

Of course, the important thing is how the check-up went, not whether the waiting room was empty. After the usual physical examination of  my head and neck and a look inside my mouth, the registrar pronounced that everything is fine - phew! All it means is that I remain in remission and there is no sign of the cancer returning in that area, but to be honest, that's as good as I can expect and hope for at this stage. It doesn't mean the medics are prepared to give me an all clear and state categorically that I am free of cancer, but it means that I am now a year in remission - pretty bloody good when I think of how I felt for most of 2011 and the thought of being alive in 2013 seemed like an impossible dream.  I can't stop cancer by willpower - if we could, how wonderful would that be? - but I can give myself the best possible chance of remaining healthy by taking responsibility for my health and eating sensibly, exercising, resting and avoiding risk factors. That doesn't mean I don't enjoy life - quite the reverse. It just means I am giving myself the best chance of being able to deal with any health problems that come my way.

The other side of my cancer coin is the facial palsy. On January 3rd, I went to the Queen Victoria Hospital in East Grinstead to have my gold weight (aka "eyelid bling") repositioned and my eyelid lift. I had to be there for half seven in the moring, which meant waking my lovely children in time to drive me there (neither of them was working that day, so they volunteered to take me - good children!). The surgeon came to talk to me before the operation and - to my pleasure - he said he thought I didn't need the gold weight any more and was going to remove it. Yay! He also thought I was a bit allergic to the gold (oh, I am so precious!) so it made sense to remove it. The important thing was whether I would be able to close my eye fully after the weight was removed and if I couldn't, then the next stage would be a platimun chain inserted into the eyelid - rising up the precious metal scale!

Now, nearly three weeks after the surgery, my eye looks much more like it used to BC. While it's not exactly as it was, and not exactly like my unaffected eye, it is far less noticeably different. This is progress. This helps me feel that I look more like everyone else and a bit more like I used to look. It also reminds me that it doesn't have to be all about oncology. A part of me also thinks that the NHS wouldn't be investing all this time and money in addressing my facial palsy if they thought that I was going to be ill again - perhaps this is naive, but it makes me feel better anyway :-) In a flurry of January medical appointment, I also had some Botox around my mouth, so I am all procedured-up.

Part of me feels a bit sad that my year has started with so many medical appointments, all of them necessary because of having had cancer. What a nasty, far-reaching disease it is! But another part of me rejoices that I am still here and enjoying life, that I have so many wonderful, supportive friends around me, that my family continues to be a constant joy to me and that the world contunues to turn. There's much to be thankful for. I am thankful.

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!

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.

The constants in my life

 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.

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.

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:

• 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!;

Those are the edited highlights of the past five weeks or so. I am struggling with the weather at the moment - I have always been affected by poor weather but normally I am okay in the summer because the weather is, well, summery! Not this year, though - I can feel my mood being pulled down every day the rain falls and the sky remains gunmetal grey. I am grumpy, snarky and not a nice person to be around - to my family, and particularly my lovely husband, I apologise. I find it so frustrating that last summer, when the weather was pretty decent, I wasn't well enough to enjoy it and had to stay indoors, out of the sun but this year, when I am well enough to potter around in the garden or go for long walks, the weather is totally rubbish. I could almost feel victimised......

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.

Blogjam....

Facing up to things (see what I did there?!)

..or, learning to live with a new reality after a cancer diagnosis and treatment.

Friday, 9 March 2012

I really must discipline myself (no, I don't mean self-flagellation, in case your minds were working overtime...); I really must discipline myself to update this blog more regularly. If I don't do this, I forget what I've been doing and how I've felt and when I do get around to blogging, it's a veritable torrent of words. I've decided to set myself a challenge - I am going to blog every day for a week, to get myself into the habit of doing it and in the hope that it will become part of my daily routine.

So, since I last posted, what have I been up to? Quite a lot, actually <hasty consultation of calendar to remind myself>....I've been picking up some of the activities and interests I have distanced myself from over the last year. Now that I feel so much better and have more energy, I think it's time I started returning to things like volunteering for my professional institute and getting more involved in church and community activities. It's good practice for the return to the workplace (not that this is looking likely anytime soon, as there doesn't seem to be much work around in the public sector - I wonder why this might be? ;-/).

Over the past few weeks, I've been up to my institute HQ in London twice, to different meetings. It feels good to pick up these interests again, but interestingly I have noticed that I am developing more challenging behaviours - questioning things a lot more and trying to bring more realism to my view of what's going on. I wonder if this is a function of being ill - am I subconsciously thinking that I haven't got time, or inclination, to pussyfoot around things? I don't know, but it's quite an unexpected development. I'm also more challenging of other things, like bad manners, -isms, etc - that's not to say I tolerated these things before but I wasn't always in the habit of saying something out loud (probably this reflects badly on me and my cowardice), whereas now I feel much more gung-ho about things.

Of course, going to meetings in London means travelling on public transport. I still find it difficult and still anticipate that I am going to get stared at - not so much on the train from our local station into London, but on the underground and on the streets. I do need to be careful about this, because what I suspect happens is that I give off signals of being self-conscious and nervous and that will often attract attention because it's more obvious that I feel I have something to be nervous about. I need to remember that London is a great big melting-pot and that most commuters are very used to people who look/dress/sound a bit different and I am nothing that special to them! I went up to London on Monday and Tuesday of this week and, while neither of these trips meant a whole day in London, by the end of Tuesday afternoon I felt exhausted. I think this was partly because the worrying and nervousness about travelling make me tired and partly because, on both days, I was seeing people who hadn't seen me since before my surgery and who were interested in what had happened, so I was replaying some of the darkest and most difficult memories. I absolutely understand their interest in me, and deeply appreciate that they want to know what happened and how I am, but I need to remember that this will wear me out. At least talking about what's happened doesn't make me upset, which it used to. This is probably partly because of the distance in time since it all started and also because, finally, I do believe I am in remission, so it feels like a new phase for me.

I've done quite a bit of socialising - with former colleagues from Tower Hamlets, with friends locally and with our neighbours, whose daughter (the doctor who stepped into the role of personal physician when my wound got infected!) was visiting with her very cute and eminently cuddle-able baby boy. I'm able to eat normally, have one glass of fizzy (lasting about three hours) and stay reasonably alert until about 11 pm, so at least I can feel that I am behaving less like a hermit!

I've also been doing a fair amount of exercise - Pilates, Zumba, aerobics, cardio-boxing (hilarious) and gym, with a bit of outdoor running thrown in too. I know I won't be running that much of the London Marathon, but I am working on being able to run bits of it and to build up the stamina to get round. I am less worried about the stamina now I have got several weeks of regular cv exercise under my belt. The Pilates is interesting, as the first class I went to left me feeling kind of "meh", but the second class somehow just clicked for me and I realised how beneficial a different kind of exercise might be for me.

My life sounds really boring, doesn't it? In reality, it feels anything but - it's a real novelty for me, after the past 9 months of feeling, for the most part, absolutely dreadful, both physically and mentally, to be feeling energetic, positive, healthy and interested in things that aren't connected with cancer or facial palsy. For so long, my outlook has been more of an inlook - I couldn't see outside what was happening to me and couldn't look outwards at the wider world around me. It's incredibly refreshing to be able to take part in community activities (like our Fairtrade Big Brew this afternoon - banana cake cooling on the kitchen counter as I type!) and to meet up with friends somewhere other than in my house. I can feel 'safe' in other places now.

I still have bad moments - had one the other day, when I just felt really despondent by my face and almost on the verge of disgusted at how rubbish I look. Sometimes I hate the thought that my poor family has to look at this lopsided face all the time - at least I only see it when I look in the mirror. My family and friends reassure me that it's not nearly as bad as I think it is, but I know what I think of it when I see it in the mirror. No amount of clever hair-styling or accessorising will disguise it. On good days, I can brazen it out. On bad days, I feel as if I am the most conspicuous thing in the world and that everyone must be looking at me and wondering what on earth has happened to make me look like this. That makes me more upset than the oncology side, to be honest, largely because the cancer seems to be more distant, in the past, whereas my face is very much here, now and into the future.

And then I think - isn't it better to have a lopsided face than to have my old face but a very limited life? Well, yes, of course it is. My rational mind tells me that. It's this irrational mind that chips away at me from time to time. It undermines my self-confidence in so many areas: driving, walking into busy places, public transport - just ordinary, everyday social situations become daunting opportunites for feeling socially inadequate.  I still do these things, but sometimes, if  I'm having a bad day, it's exhausting. I am lucky that usually I have good days, rather than bad, and sometimes I even find myself talking to people for the first time and not even thinking that I need to explain my appearance to them - that's good, because it means that I am feeling more comfortable, more accepting of what I look like.

 

I'm just tired of being tired, tired of feeling different (and not in a good way) and so weary at the thought of months or years before my face returns to anything remotely approaching symmetrical.  That's the time I need to go for a run or to do some exercise to make these demons go away. Thank goodness it works!

 

I shall end this post on a positive note - I've had a lovely day today, baking, drinking tea with friends, talking to people that I think might become friends, arranging to go for a walk on Monday - I even fulfilled my role as Amy's PA, taking my little list of chores with me into Oxted and ticking every single one off! Why do I even need to think about going back to work? Looking after her is a full-time job in itself :-)

 

 

 

 

 

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My week - it's been a good one!

So much for my resolution to update this blog regularly - a week has gone by since I last wrote anything!

It's been a week filled with exercise, really - after trying Pilates last Tuesday (not a raging success; I felt as if it was all a bit too slow and not active enough for me), Amy and I trotted off to cardio-box, an exercise class based on (yes, you're there already) boxing! After the warm-up, we did about thirty minutes of shadow boxing, repeating arm movements and bouncing on our feet, ducking, etc. It was all going so well till we had to move our arms in double time while keeping our feet at the same pace  That's when I got my feet and arms completely out of sync and ended up dancing in a vain attempt to copy the instructor and the rest of the class! At least it kept Amy amused, watching me pretending that what I was really doing was floating like a butterfly while stinging like a bee. We then worked our way round 10 stations, doing press-ups at one, tricep curls with weights at another,  sit-ups etc and as part of this, we got the chance to don the boxing gloves and hit that punchbag. I found it much easier to co-ordinate my hand and legs when I was hitting something (watch out, Neil, when I want to practise my moves!). By the end of the class, I really felt as if I had worked harder than in any other class I've been to.

Thursday brought the excitement of a replacement hose for my Henry vacuum cleaner (you can tell my world has shrunk somewhat when a bit of plastic tubing gives rise to such heady pleasure). I'd like to point out that nothing in the previous sentence is a euphemism, by the way. Inspired by this foray into domestic excellence, I decided to bake some teabread. I was commenting to Neil this evening that I really enjoy being at home because I feel so much better now - while I was at home for most of last year, bar the first few months, for much of that time I felt so dreadful and weak that I couldn't enjoy it properly. Now, feeling stronger each week, I am loving the chance to cook at a more leisurely pace, to keep on top of housework, to free up weekends to spend with Neil, to be able to go to the gym and exercise classes during the day, to catch up with people and generally not to feel everything has to be crammed into Saturday and Sunday. That's not to say that I don't want to return to work - I do - but not full-time, since I think I need this balance and not to be at work every day to keep me fit and well, not just physically but mentally as well. I can see how easy it might be to get sucked back into that long hours culture and end up undoing all the good I am doing myself by focussing at the moment on getting fit and healthy.

Our weekend was a very sociable one. On Friday evening we were invited over to our friends', the Dodds, for supper and an evening playing board games. What fun! We played Old Maid, Pit, Qwirkle (yes, I have spelt that correctly!) and Chase the Ace. I'd forgotten how much enjoyment there is in playing simple games, no computer or fancy games console involved. We enjoyed it so much that first thing on Saturday, I ordered us Qwirkle and Pit from Amazon so we can do more of this kind of stuff at home. I really liked playing cribbage with Adam over Christmas and playing Jenga etc on Christmas Day. What was especially nice for me was that the last time we were over at the Dodds' house, I had no appetite and was terribly tired, but this time I was eating properly and  had loads more energy, so we were able to stay until a respectable time (and I tucked away a respectable amount of food!).

On Saturday, our friends Steve and Gwen travelled up from their home in the New Forest to visit. Steve's back garden backed onto Neil's, so they have known each other since they were knee high to a beer bottle. We haven't seen them for a couple of years, so we had a lot of catching up to do. After lunch, we sat around chatting and, as often tends to happen, coming up with solutions to all the world's problems :-) They left in the early evening, which was perfect timing as I was aware that I would feel really tired the next day if I carried on talking for much longer (it's still the thing that makes me most tired, talking - ironic, eh?).

Sunday, after church, for some reason I started feeling a bit low. The sun was shining, so it wasn't weather-related, as often happens with me, so I think it was just a bit of a dip with no apparent cause. Neil spotted that I was a bit despondent and suggested I put my running gear on and went out for a run. After a bit of grumbling (I'll be too slow, I won't enjoy it, people will laugh, yada yada yada), I did as he suggested and went out for a run. I ran the same route I ran the previous week, didn't have any walk break and ended up shaving a few minutes off my time, so well done, Neil - you knew exactly what I needed to do, as I came home with a smile on my face and feeling much better. I am so lucky that I have found a medication that is totally natural and chemical-free - exercising helps me so much.

And so we come to Monday and the start of a new week. I popped next door to have a cuppa and a catch up with my neighbour and went into Redhill in the afternoon to sort out my mobile phone upgrade. I like to look at and feel the handsets, so need to go into the shop, not just do it online. One spanky new iPhone 4S and pair of trackie bottoms later, I returned home, a happy shopper. Legs, Bums and Tums with Amy last night as the first of this week's exercise classes - not sure I'm seeing much difference in any of those parts of my anatomy, but my stamina is good!

Today, Tuesday, I've spent a total of three hours at the gym, starting with an early morning session at half six with Neil. I had a really good, comfortable run on the treadmill and did lots of resistance work, squats, sit-ups etc. Later in the morning I had Zumba (always a feel-good class) and this evening I did Pilates. I'm glad to say that this evening I "got" Pilates - I felt much more at ease in the class and understood properly, not just conceptually, how valuable this kind of class will be to complement all the aerobic and active stuff I do. In fact, today, for the first time since last April, I almost managed to forget that I have been ill or that I have facial palsy. Apart from the fact that during some of the positions in Pilates I had to be careful of my shoulder and neck, I haven't been limited in any of the activities I've done today. I chatted to several people at Zumba and Pilates without feeling the need to explain (apologise for?) how I look. I think this is real progress for me and I hope tomorrow is the same. I do understand that it might not be as good as this every day, but just realising that I can feel like this at least once is really positive.

I am sitting here this evening feeling pretty good. I value the preciousness of life and the fact that I have a second chance at it. Maybe the realisation that I am in remission is finally starting to take effect. It may be that now it's starting to feel real and I can leave the limbo I have found myself in for so long. Whatever it is, I wish I could bottle it and then uncork it whenever I feel the need - and not just for me, but for others who need it. Wouldn't that be brilliant?

Face Off....

Sometimes my life is so full of glamour that I can scarcely bring myself to believe it. Take yesterday, for example  - my morning consisted of clearing the remaining detritus from Adam's bedroom so the new carpet can be laid later this week. This final clear-up operation resulted in a trip to the municipal dump and to the charity shop, where I deposited, respectively, rubbish and recyclable clothes, books and glassware. On returning home, I could no longer avoid the slightly pungent odour from the kitchen sink and had to don the Marigolds and clear the drain outside. This is a job normally undertaken by Mr S, but as it's dark when he returns home from work, I don't think it's fair to expect him to rummage around in the dark. No need to go into details, but let's just say job done.....since I was obviously in clearing/cleaning mode, I then cleaned my shamefully filthy car. I can confirm that its true colour is, in fact, silver, underneath all that grime and mud.

I felt quite grubby after all that de-griming activity, so after a long soak in the shower and a fruitless attempt to tame my increasingly independent hair, I had a quiet afternoon, with some desultory tidying up and a bit of ironing to stop me getting too comfortable on the squishy sofa. Amy and I did a legs, bums and tums class in the evening. It involved quite a bit of work with hand-weights and of course, that's sometimes quite tricky for my left shoulder, so from time to time I just used a weight in the right hand and only did the movement with my left arm. I am hoping this doesn't mean that I start to look even more lopsided, as muscles develop more on the right than on the left! Please, give me a break!

Zumba this morning, which is always invigorating and fun, even if I get totally unco-ordinated at times and end up going in the opposite direction from the rest of the class! I think what happens is that when I look at the instructor, who faces the class, I copy what she is doing but not as a mirror image. Everyone else seems to reverse what she does, so if she is moving her right leg, they move their left, but I move my right in exact imitation of her. Is it to do with being left-handed? I don't know, but I've noticed before that when I point out to anyone that they have a bit of food or dirt on their face, for example, I automatically point to the corresponding part of my face, but they always mirror where I'm pointing and start wiping the other side of their face! Maybe I am just a bit odd (no need to comment on that suggestion, by the way!).

Something else that happened this morning, which made me think - a friend commented on the fact that I was brave to link from Facebook to my charity fundraising page and a photo of my face. I was a bit puzzled by this, because I still don't feel ready to share what I look like with the wider public and would have thought very long and hard before deciding to put up a current picture. I checked and it is, in fact, an old picture of me, from about a year ago. My friend thought my eye looked a bit different in the photo and had assumed that this was a more recent photo. So, should I be upset that when I had my old face, I might still  have looked a bit assymetrical? I don't think so - what purpose would that serve? I suspect, looking at the photo, that I might have been squinting into the sun, but perhaps I have allowed my memory to cultivate the belief that I used to look considerably more symmetrical and "normal" than I actually did. Maybe I don rose-tinted glasses when I look back at how I used to be and somehow imagine that I looked different from how I actually did look!

The last thing I want is for my friend to feel bad about this mistake, so I mention it here with the intention of sharing my reaction and wondering if it's reasonable: initially, I was a bit taken aback (that sounds terribly dramatic, but I don't mean it to be) but then I thought - actually, if I am going to do anything at all to help myself and other people with facial palsy, I can't be reacting as if somehow I am ashamed of how I look now and getting upset if someone thinks an old photo of me pre-surgery looks as if I have some assymetry.  Isn't the point of getting involved with a charity specifically to support and educate about facial palsy to make it more acceptable to have a "different" face? To make it somehow less "shameful"?

I have now amended my fundraising page to make it clear that the photo is of the "old" me, the one whose face pretty much worked :-). Having said that, my face does still work - I can eat, drink, speak, smile (in a lopsided fashion!), blink, cry and show emotions. It just doesn't work all over in quite the way it used to.

One day soon, I think I will be ready to show a photo of how I am now. Those of you who have seen me know what I look like - if you haven't seen me since late 2011, I hope you would notice an improvement. For those who haven't yet seen my new face, when I do post a photo, you will get more of an idea of how it's changed. I just need to be brave enough to say "Look, this is how I am now".

Soon.

Boom, boom, boom, boom!

What do you do when you think you might get bad news, you prepare for how you might react if you get bad news and then, when it turns out the news is good, you haven't thought about how that might feel? That's just how I feel, even today, four days after getting my fabulously welcome news about there being no signs of cancer in me.

I worry that I might seem blase about the news - believe me, I am anything but! I am immensely thankful and deeply, deeply grateful to our wonderful NHS for the care they have taken of me at every stage of this frightening, turbulent process. It's just that I still feel a bit - well, "numb" is the best word I can think of to describe it. It's almost as if I have schooled myself over the past year not to expect the news to be good, so when it is, I have forgotten how to feel!

That makes a kind of sense to me and I suspect it's a kind of protection mechanism I have built up around me so that I didn't/don't get disappointed when the news turns out to be not so good. I am pretty certain that at some point, the reality will kick in and that's when I will react. It might take the form of manic giggling, or a bit of a sob, or even a snivelling snotfest of crying, but it will almost certainly happen at some point. In the meantime, I'm just getting on with things and starting to plan a bit further ahead than I have done in recent months. Without wanting to sound defeatist or morbid, for a large part of last year I couldn't see beyond Christmas 2011, simply because I wasn't entirely convinced that I would be around after that time. Don't judge me, don't call me pessimistic, don't think I had lost the will to live because I absolutely hadn't. I just couldn't get my mind to behave differently. It's great to be able to think "Yes, I can look further ahead and plan for 2012, 2013 and beyond."

Right, enough of the introspection! What has happened since hospital on Friday and my good news? We had a lovely guest for the weekend, a Norwegian friend of our daughter's, whom she met while backpacking around SE Asia. We didn't see that much of either of them over the weekend, as they were meeting up with other friends from their travels up in London and staying up there on Saturday night. Our house was the meeting point for some of these other friends too, so there were plenty of young people around over the weekend to infuse the house with energy and laughter! I think Maddy enjoyed sampling a cooked English breakfast and a roast dinner (I was under strict instructions to make Yorkshire puddings, bread sauce and roast parsnips! Being a good mum, I did as I was told, of course....). Maddy left today and we hope she'll come and see us again - her English is superb (and infinitely better than our Norwegian!)and she drinks almost as much tea as we do :-).

Neil and I went out for a lovely, celebratory meal on Friday night and then were out for dinner again on Saturday, at our good friends' home. Ample amounts of fizzy were sipped over the two days, as we marked the milestone of Friday.

Yesterday I went to visit a friend who has broken her ankle/leg really badly and has to spend all day with her foot up on a stool, hobbling around on crutches only when necessary. She was very good visiting me last year when I was convalescing at home, so I was pleased to be able to do something in return. I do think that when something happens to you that makes you feel unwell, upset, restricts your mobility or independence, then it is a huge upset in your world - sometimes people have said to me over the past year that what's happened to them is nothing compared to what's happened to me, but I don't agree. I think that we are all affected to different degrees by the events in our lives and what might seem trivial to one person can be devastating in its effect on someone else. I hope that I never start to think "Well, you think *you've* got problems? Wait till I tell you what *I've* been through!" because that would mean that I had lost a degree of compassion.

Today - and this is where the "Boom, boom, boom, boom" comes from - we held a drumming workshop at my church for local school-children. I went along to help and ended up taking part ("Oh, surely not?", you murmur....). I ended up banging on the big bass drum and also the tom-tom drums. Great fun!

Of course, it's Valentine's Day today, when we tell the one we love how much they mean to us. I cannot find words enough to tell Neil how much he means to me. He has been my emotional foundation and rock over not just this past year, but our entire marriage. I couldn't be without him and I feel like this every day, not just Valentine's Day.

Oh, and I joined Twitter - thought about it long and hard and decided that it might help me get some more exposure for this blog and hence raise some awareness of what it's like to deal with cancer and facial palsy. It's good to think yes, I am a cancer survivor. And my face? I had surgery to save my life and it left my face a bit wonky. It is the better alternative!!