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!

Tuesday, 13 November 2012

Money and mud....

People are so generous. Even at this time, when there's not a lot of spare money floating about and everyone is feeling the pinch, we raised £1500 for Facial Palsy UK at our CIPFA SE Dinner on Friday night. I was feeling a bit anxious beforehand, as I mentioned in last week's blog, and this anxiety manifested itself in a nagging headache which began at about 3 o'clock on Friday afternoon and remained there, despite taking some paracetamol. For the first time in a long time, I hadn't any of my super-duper co-codamol with me, which might have got rid of my headache had I been able to take them! My headache continued to develop during the rest of the afternoon and early evening and eventually led to me leaving at about half ten to go home - but first, the dinner! We had a champagne reception beforehand (how lucky for me, given that it's the only alcohol I can tolerate) and while people were sipping at their drinks, Ro and I were going around "persuading" people to buy some raffle tickets.

At the beginning of the meal, once everyone was seated, our regional President invited me up to say a few words about Facial Palsy front of 240 people. Imagine standing up in front of a room with that number of people in it when you feel completely confident in how you look - wouldn't you be a bit nervous and apprehensive? You can guess, then, how I felt, knowing that my face wasn't quite right and that it would be the focus of everyone's attention for the next several minutes. However, it had to be done if I wanted to raise the profile of Facial Palsy and encourage people to buy raffle tickets, so I took a deep breath and a gulp of champagne and took to the floor. Whatever I said must have worked, as we ran out of raffle tickets! That's not a bad position to be in, especially as my friend Ro then rattled the collecting tin at the end of the evening, after I had gone home, and proved that the need for loose change is in inverse proportion to the amount of alcohol consumed :-). I went home with a sore head but a  happy heart (and £1400 in my bag!), knowing that Facial Palsy UK was going to have a bit of a boost to its bank balance. Thank you to everyone there who helped with that great achievement (and to the kind people who said my speech had really moved them).

And so to Saturday and the beginning of an annual event in my social and racing calendar - the Sodbury Slog. Those amongst you who don't understand the attraction of ploughing through mud, climbing hay bales when there's a perfectly good stile hidden behind them, splashing through thigh-deep muddy water and  hauling yourself out with a rope, or running with pounds of claggy mud turning your shoes into Frankenstein's monster's clumpy footwear, will wonder why, oh why, oh why I would want to do this voluntarily. Well, it's because it's the most fun you can have with your clothes on, as far as I'm concerned. It's sociable, I meet up with friends I don't see except at Sodbury, we stay in a lovely hotel, I get to wallow in mud and don't get told off for ruining my clothes - what could be better? Okay, there's a bit of running involved - or, in my case, sliding, falling over and plodding - but it's just a wonderful day. Because the race is always on Remembrance Sunday, we have a bugler playing the Last Post, a two minute silence and a reading of those most poignant lines "At the going down of the sun and in the morning, we will remember them" so I always start the race wiping tears from my face. To me, running through beautiful countryside on a perfect, sunny autumn morning is a perfect way to respect those who gave their futures so that I could have my present.

To anyone who hasn't yet discovered the joys of cross-country running - try it! The worst that will happen is that you will get covered in mud and glaur :-)

Have I converted you yet?

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? 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.

Thursday, 1 November 2012

The one with the check-up, the work and the mud...

Last blog, I spoke of the anxiety I still feel in the week or ten days before my three-monthly oncology check-up at the Marsden. It's the scary thought that, if something has gone wrong in the first week after my check-up, it's had thirteen weeks to get worse, rather than the four weeks when I was on a monthly check-up cycle. I have to remind myself that the doctors, the oncologist, the experts, who make the treatment of this illness their life's focus, do know best and that they wouldn't put me on a three-month cycle if they weren't sure it was the right thing to do. Despite reminding myself of this fact and that I am not a doctor (although, perhaps understandably, I feel a bit of an expert on my condition compared to pretty much everyone I know!), the nerves kick in and I find myself bracing myself for how I will deal with bad news. I hope that, eventually and hopefully soon, I will start to feel less anxious.

And so to the morning of the check-up. Car on auto-pilot, I drove to the hospital, parked up and went in, prepared for my usual nervous wait. Somewhat to my surprise, I was called through early, weighed, and no sooner had I sat down in the consulting room and started reading my book than the consultant came in. Yes, dear reader, I was seen early! It was the top consultant as well, which always makes me feel a bit more reassured - not that I doubt the competence and knowledge of the less senior specialists, but I do seem to derive an extra layer of comfort from the opinion of the woman at the top. She did a thorough physical examination, asked me lots of questions for the multi-paged questionnaire she has to fill in to compile various stats and talked about how I am generally. She seems very pleased with my oncology progress - still in remission, so that makes it 8 months since the PET CT scan and a year since they initially said they were confident I was in remission, although I couldn't quite believe it until the PET scan showed no sign of anything untoward. Funny how I needed the mechanics and scientific objectivity of a piece of machinery before I could quite accept it, isn't it?

After making an appointment for three months' time, I popped my parking ticket into the machine, purse at the ready to feed its hungry metal mouth, only to find that I had been seen so quickly that I was still within the thirty minutes parking grace period! First time I think that has ever happened.

On my way back to Oxted, I called in on some very old friends (as in, I have known them for a long time, not that they are great in years) for tea and a chat (and a chocolate croissant, as it turns out). Their daughter has ME - and I know that one regular reader of this blog, Geves, has a daughter of a similar age who also has this (literally) crippling and debilitating illness - and she, her mum and I spent some time talking about the impact of illness and how to deal with it physically and psychologically. For someone with ME, I think the difficulties are compounded because there is such mixed perceptions of ME. It's clearly a genuine, and often extremely serious, illness but some people still don't believe it really exists, which means firstly that the ill person almost has to defend their tiredness, their nausea, their lack of interest and concentration and secondly that there is less inclination to fund research and give it the attention it deserves. No one queries the existence of cancer, so I didn't have to devote any energy or time to considering whether anyone thought my illness was real or just some psychosomatic, almost "trendy", affectation. How awful to be ill, to be unaware of whether you will get better and to feel that people don't really believe you. I know it's genuine, real and hard to deal with, for the patient and the family.

What else has happened? Well, I have returned to the world of work - I have a 30 day project at a prestigious London Borough, working two or three days a week. This suits me perfectly - I can carry on with my volunteering at Orpheus and still have a day a week at home to keep up with domestic stuff, paperwork, charity stuff for Facial Palsy UK and - dare I say it? - just take it easy. Interestingly, I 'm finding that I have no problem concentrating at work all day and am loving the decision-making, the challenges of work, the social side of the office and using my brain again but find the commuting absolutely exhausting - yet I have a really easy commute! I travel by train to London and then walk for about 15 minutes, so no need to travel on the tube. Yet I find myself drained by the journey - not helped by the fact that, at this time of year, people are beginning the first of their winter colds, so there is lots of coughing and sneezing going on. I also get more than just mildly irritated by the incessant ringing of mobile phones, usually with *zany* ringtones and the incredibly pedestrian nature of their conversations. "I'm on the train" - really? "What are we having for dinner?" -what, you need to know this now? Why can't you just wait till you're home and have a surprise?? Does anyone else find themselves simmering with anger at the constant noise, all exacerbated by the increasingly lengthy announcements by the train guard as we enter and leave every station - or station stop, I should say. "Please take all your belongings with you", "Please mind the gap between the train and the platform", "Please remember to breathe".....aaarrrgggh!! I really should go on that Grumpy Old Women show!

On October 14th, it was our local 10k trail race and I managed to plod around in a reasonably respectable time, splashing through the muddy puddles and having a great time. It's a lovely race, totally off-road and it was a glorious autumn morning, sunny and bright. Best thing - cakes afterwards :-). I have my favourite race in just over a fortnight - the Sodbury Slog. It's always held on Rememberance Sunday and is a fantastic mix of poignant and respectful observation of the two minute silence and a complete and utter mudfest, followed by lunch with fellow mad mudlovers. I missed it last year, obviously, so am very much looking forward to splashing through ditches, hauling myself out of muddy water with the aid of a rope and generally trying not to lose my shoes in the gloopy, sticky mud. Do I hear you mutter that I must be mad? Yep, you're probably right!

I'm going to end this blog entry here, as otherwise I will just continue to ramble. I really need to discipline myself to update this more regularly. Be very afraid....