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The Best Day Of My Life: October 25th, 2014

1 Nov
It’s My Party & I’ll Have Two Birthdays If I Want To!

Getting out of hospital on the 13th October, 2013 with my head churning from a disastrous ICP bolt removal, I knew that the probability of celebrating my fortieth birthday in style on the 24th October was highly unlikely.  In my fantasy I had planned a suitably joyous birthday bash with all my favourite people, some live music from my musician friends and maybe a theme to add a bit of fun (I’d been toying with the idea of Paris).  In reality, I spent the day lying on the sofa, too ill to get dressed and too nauseous to even take one bite of the cake my family had tentatively carried in.  Happy fortieth!  Never mind, I thought; I’ll have a party in a month.  Fast forward seven months and continuous pressure adjustments on my shunt to try and restore me to some semblance of my pre-surgery ‘normal’, I abandoned the idea of having a very-very-very-very-belated fortieth birthday party and instead decided to celebrate it on my forty-first; well, the Queen can have two birthdays in the same year – why can’t I?  In June this year, I decided that I was going to go for it.  Planning anything in advance is always a bit of a nightmare for obvious reasons; I simply cannot rely on my health to get me through an event.  It’s too erratic and unpredictable.  And over the past fourteen years, I have had so many cancelled birthdays I have nearly lost count.  But sometimes in your life you just have to decide that you are not going to be completely dictated to by a concern, fear, medical condition or whatever it is that may make you stop and think twice.  Sometimes you just have to go for it.
The planning of this event (I have to call it an ‘event’ now that it’s past and happened; because it really, truly was) nearly sent me back into hospital.  Never before have I had to organise such a large do for myself (for work parties and colleagues yes…but then you’re not paying for it which makes making big decisions a lot easier!).  Mum, Dad and I visited numerous venues (all of which were lovely but all of which cost hundreds if not thousands for one afternoon, which was a bit baffling…this wasn’t a wedding!), my friends and I discussed numerous potential themes, I had numerous sleepless nights wondering why on Earth I had thought that this would be a good idea and had numerous changes of guest list (being limited by a budget is never good but hey-ho; we’re not part of the Rockefeller dynasty).  What I eventually learned was a very simple lesson, not unlike the one that Dorothy learns in The Wizard of Oz; to find your hearts desire, all you have to do is look around you and reach out to the friends and family you have.  Super-schmaltzy?  Yes.  True? Yes.  Just as I was starting to despair of finding a suitable, affordable venue and not really sure on what I even wanted to do any more, my friend Phill called me to see how I was.

Lovely friend Phill

Lovely friend Phill

Phill and I have known each other for about twenty years; I met him through my brother, worked with him on The Artists Web for a few years and as he is a musician, sang with him in numerous gigs as well as doing backing vocals on each of his albums.  Phill is a kind, giving, funny and caring man.  So much so that as soon as he heard about the party dilemmas I was having, he offered me the use of his house for free.  I feel I shouldn’t just write ‘his house’; a more accurate description would be ‘his mahoosive Regency townhouse which he’s just completed after six years of restoration and which is now being used for photos shoots for Paul Weller and for weddings and which is like stepping back in time’.  It’s a breathtaking house.  Having spent a lot of time with Phill whilst he was undergoing the renovations (he literally stripped the entire house back to its original layout and researched the colours that would have been used, uncovered original mouldings and features, hand-scrubbed about a gazillion original hinges/locks/keys with a toothbrush to keep the authenticity and basically poured his heart and soul into the project), it’s been fascinating to see its sure but steady transformation.  When it was completed a couple of months ago, he invited me around for a catch-up and we sat in his living room eating fish and chips (and drinking a margarita) in his ‘living room’ (read ‘ballroom’) and I remember looking around me and feeling true astonishment at just what he’d achieved, literally single-handed. I admire him no end.
So now we had a venue.  Angel House – do take a look!  A beautiful Regency house.  And now I had a theme – Regency!  I didn’t want a full-on fancy dress party so I plumped for character masks which were reasonably in keeping with the era.

The masks - I said they were freaky, right?

The masks – I said they were freaky, right?

They were also suitably freaky once on!  I finalised my guest list (cutting out friends I really wanted there was agony but budget and venue size restricted me so in the end I had to be tough), bought fifty masks online and sent out the invitations.  I needed some entertainment and had had a late cancellation from a previous friend’s band which I’d booked (no fault of her own, I feel I should add!) so was left with about a week to sort something else out.  Enter Terry.  Terry is a dear friend who I met in 2001 when I started working as a vocal coach at Nick’s Music Studios in Brighton.  I taught vocals and he taught guitar.  We hit it off and ended up spending lots of time together both in and out of work as we formed a couple of bands (one general, one country) and spent many happy months gigging and performing at weddings, birthdays and so on.  Terry is a very successful musician (I don’t usually feel the need to mention it but I will here; he is Terry Bickers from The House Of Love, who have had a successful run in the 80’s and 90’s with chart hits and a huge following still today as they re-formed and are now gigging again) and he immediately offered to play.  Hurrah, we have music!  He teamed up with another uber-talented musician-friend, Ed (yes I know I keep saying they’re all so talented but they REALLY ARE!  I’M NOT LYING!) and formed a duo to play music everyone would know.  Terry said a microphone would be set up for any of my friends who wanted to get up and sing (I met many of them through theatre groups in my youth so many of them do sing) and I agreed to sing too.  Good old Terry.  He’s such fun that I knew he’d be perfect for this; a bit like an up-market karaoke!
I wanted to have Regency ‘touches’ at the party rather than have a full-on theme.  The house spoke for itself; you couldn’t miss the fact you’re in a genuine Regency property, but I wanted a nod or two at the era with the entertainment too.  So I asked another good friend, Andrew, who plays in a Caleigh band with some other friends of mine, if they could come and call some Regency dances for us all to do.  Not only was he totally up for it, he already knew two genuine Regency dances as his partner is a bit of a Regency fan and they do the dances in the Caleigh band.  Fantastic.  Hurrah; we have two lots of music!  I needed a bit more than that to be satisfied so I decided to project the BBC version of ‘Pride And Prejudice’ (starring Colin Firth!  In a wet shirt! Getting out of a bathtub!)  on to the wall.  Of course I had to test this out at my home and spent a happy evening watching Regency dances unfold on my walls and Mr Darcy may or may not have strode about fourteen-thousand times wearing his wet shirt across my ceiling.

Oh look! There seems to be a Regency dance taking place on my wall!

Oh look! There seems to be a Regency dance taking place on my wall!

It looked fantastic so that was a go-ahead. Finally, my best friend Sarah and I got together at mine to write out genuine Regency phrases (oh the joys of the internet!) onto cards so that guests at the party could have a Regency conversation.  We divided the phrases into the categories of compliments, insults, wooing and social observation.  Some of our favourites (which had me laughing so hard that the pressure in my head got too high and I had to leave the room on a couple of occasions) were: ‘will you partake of some gobble-cock?‘ (‘would you like some turkey?’), ‘he is the very pinkest of the pinks!’ (‘he’s so fashionable’) and ‘alas, he/she is cucumberish’ (‘he/she doesn’t have much money’).  Some of the phrases were rather rude so I won’t put them up here.  After that, we sorted out the food and catering, furniture-hire and glass-hire and everything was ready, although the whole process had taken a few months.  Now I just had to pray that my head would behave.  Which it kind of did, only the two nights before the party I didn’t sleep at all.  Not a jot.  Anyone who has suffered insomnia will know how rubbish you feel after a night of no sleep whatsoever, let alone two consecutive nights.  Unfortunately, with hydrocephalus it’s even worse.  I know this having had bouts of insomnia my entire life, both pre and post-diagnosis.  Sleep is one of the single most important things to me.  If I don’t sleep, I can feel so ill that I consider calling the hospital and I very rarely do that; it just wreaks havoc with the pressure in my head.  So at 3.45am on the morning of the party, already feeling terrible from the previous nights waking hours, I called my brother in a bit of despair, I have to admit (it’s okay; he was on the night shift at work!).  Luke was brilliant at calming me down because at that hour and feeling that ill, the thought of hosting a big party in a few hours was simply beyond me.  I honestly wanted to cancel the whole thing, which was awful because I am not by nature a quitter.  I’ve spent pretty much the last fourteen years getting on with things whilst feeling varying degrees of crap; it’s just the way things are.  If you don’t mention it, nobody knows anyway so it’s pretty easy to get on with.  I’ve learned to apply make-up to cover up the white cheeks, the black shadows under the eyes and the strange lines I get (red ones) around my forehead if my intracranial pressure is off.  But tomorrow all the attention would be on me and it would be harder to disguise.  But as my brother reminded me, I’d been very careful with my guest list in case exactly this scenario would happen; not one person who would be there wouldn’t understand if I was not on form or if I needed to lie down at frequent intervals.  When I sorted the guest list, I chose the people who have made what could be a difficult existence easier for me; that quality makes the best friends, I have discovered over the years.  Luke also reminded me that once the party started, adrenaline would carry me through anyway.  He was, as it turned out, correct.

Nibbles in the Drawing Room

Nibbles in the Drawing Room

So when the time came and I teetered in my heels into Angel House (teetered being the operative word; I have size eight feet with a G-width fitting – heels are not generally good friends with my feet) I felt re-energised and ready for the afternoon ahead.

One of my favourite surreal!

One of my favourite photos…so surreal!

We had decided on a three o’clock start for the party as my head struggles with late nights and also I had many friends travelling down from London so wanted to give them a fair chance to get back at a reasonable hour; gone are the days of the all-nighters!  Being in our forties (and many of my friends now having young families), a party ending at eight in the evening seems perfectly acceptable!  The house looked beautiful; Phill had got a florist to put gorgeous arrangements in the main reception rooms.  The place smelled of fragrant lilies.  At three, everyone pretty much turned up on time. The house filled up quickly and everyone was wearing their masks and looked very dapper indeed.  In fact three turned up in full Regency attire which was amazing!

Two Regency ladies; (my boss on the left and my nephew's Mum on the right!)

Two Regency ladies; (my boss on the left and my nephew’s Mum on the right!)

Lord Malc and Lady Sarah

Lord Malc and Lady Sarah

After drinks and nibbles downstairs, we gathered in the upstairs ballroom for Regency dancing, courtesy of Andrew and his piper friend.  I’d forgotten just how good Andrew is at this; I had thought that it would probably end up mostly just the girls dancing with the boys sitting out and feeling too cool and macho to do it.  God, was I wrong.  Andrew seems to cast a Regency dancing spell over parties and in the first dance there were three large circles with the men almost outnumbering the women!  Andrew is not only full of energy, he’s hilarious and had a lot of fun interacting with some of the dancers…especially those who were getting it wrong!

And the dancing commences...

And the dancing commences…

It was so fantastic; we did two dances (the second one had to have the rug removed after two ladies tripped over it and fell over) and everyone got very much into the spirit of it.

Andrew - an excellent dance-caller!

Andrew – an excellent dance-caller!

The first dance was a little raucous with shrieks, shouts and laughter as my university friends couldn’t help chant along with the directions; ‘step left!  Step right!  And turn-a-ROUND!’ until Andrew gently reminded us that such behaviour at a Regency gathering would have been seriously frowned upon and we would have been considered uncouth.  So the next dance was performed with the required etiquette, bows and courtseys in place, noses in air and only stifled giggles to be heard.  It was actually quite tiring!  For such seemingly gentle dances, they were quite specific in their positioning (this was one heck of a courtship ritual in those days) and required a lot of concentration to get right.  Such good fun.
After the dancing we all had food, drink and a breather.  I’d worried along with Mum that we wouldn’t have enough food but we had as a result over-provided so we had plenty!  Whilst we were stuffing our faces with a rather grand spread downstairs, Terry and Ed were setting up the music in the Ballroom.

The boys getting ready

The boys getting ready

This gave me a chance to actually speak to some of my guests (it’s so hectic being a host!  I had no idea!  The panic of not getting around to everybody!) and it was clear that everyone was so far thoroughly enjoying themseleves.

And up we go!

And up we go!

There were friends there whom I hadn’t seen for a year or so, so it was fantastic to see everybody again.  After everyone had eaten, rested and had a good catch-up with each other, it was upstairs for music.  Throughout the afternoon, I could hear people loudly declaring the  Regency quotes Sarah and I had written out from the conversation table (which I’d placed on the half-landing) at each other and shrieking with laughter over them.  The ‘gobble-cock’ quote seemed particularly popular, judging by the amount of times that I heard it!  By the time we all settled at the re-arranged tables in the ballroom, the band were ready to go.

Gathering in the Ballroom

Gathering in the Ballroom

The boys were fantastic; they had a set list and initially managed to stick to it.  That was, until I got up and sang ‘Desperado’ by The Eagles; it’s a song Terry and I played in our country band and is a lovely song.  I hadn’t banked on the fact that by now my voice would be hoarse with talking.  Plus I hadn’t done any vocal warm-ups (I’m a vocal coach; I always stress to my students how important warming up first is for the voice and here I was not doing so much as even a lip-trill!) and I hadn’t actually got up and sang live for a few years, thanks to the head and hospital.  So when I did actually get up behind the mic and saw a sea of faces staring back at me, I definitely had a moment of ‘why the bejeezus did I think that this would be a fun thing to do?!’.

Singing with the boys

Singing with the boys

  Personally, I don’t think I sang it particularly well!  I was way too tired and too unprepared. Everyone said it sounded great but it was my birthday so they hardly would have said otherwise! But it was fun and so lovely to be performing with Terry again after so long. After that, a brief break for not one, but two birthday cakes!  My amazing Mum had arranged them and she’d re-created the cakes I’d had at my fifth birthday.  She had made (when I was five) a cake with a doll’s body and the cake bit making up the skirt.  Being five and having a strange sense of street cred at that time, I was anxious that people would laugh at it.  Don’t ask me why.  It was a perfectly good cake.  But Mum didn’t bat an eyelid and instead took me to the local cake shop to choose a cake which I felt my five year-old guests wouldn’t laugh at.  The cake I chose consisted of three marzipan bears in a pink bed.  So imagine how I felt when Mum brought in…an exact replica (if a little bigger) of the doll cake!

The first cake!

The first cake!

  It was like going back in time.  Just as I was getting over that and Mum had told the story of the poor rejected cake to the guests, I looked up to see Dad bringing in an exact replica of the bears-in-the-bed cake too!

You mean there's another one??

You mean there’s another one??

It was such a lovely memory for them to recreate for me – and so funny as well! Amazingly, when Mum had gone back to the shop (yep, still there thirty-six years later!), the woman who had actually worked there on my fifth birthday was still there and remembered the cake!  They don’t do it anymore but she made it for Mum which made it even more special.

Dad with surprise no. 2; I wasn't about to swear there, honest!  Just an unfortunate camera moment!

Dad with surprise no. 2; I wasn’t about to swear there, honest! Just an unfortunate camera moment!

My parents are amazing; they do things like this – remember the details and spring them again on you when you least expect it which is so lovely.

Five years-old revisited, thanks to my Mum!

Five years-old revisited, thanks to my Mum!

After everyone had sang ‘Happy Birthday’ (twice!  Once for each cake!), the music resumed.

Lana and 'People Are Strange'

Lana and ‘People Are Strange’

  And now my friends had a glass of wine (or two) inside them, they took to the microphones.  Lana sang ‘People Are Strange’ by The Doors, David (who was a dancing, whirling fireball of energy and would pounce on unsuspecting people – namely myself, my Mum and my Nan – to get them dancing) sang ‘Your Song’ by Elton John.

A very soulful 'Your Song'!

A very soulful ‘Your Song’!

Danny, my friend from university, got up and sang ‘Working In The Coal Mine’ – which Terry and Ed hadn’t even got the chords to but being the fab musician they are, this wasn’t a problem!  Danny was amazing and got everyone joining in on the chorus.

'Workin' in a coal mine, going down, down, down...'

‘Workin’ in a coal mine, going down, down, down…’

  After that, Terry had the mic back and played until we got up and danced and whirled to finish off the day.

At seven, we started to wind things down.  I wanted to carry on for longer but I was so tired I knew this was the right time to stop.  We’d had such a lovely afternoon and when I said a few words to thank everyone for coming and for everyone who had helped put the day together, I tried to explain what it meant to be a) well enough for the first time in five years to actually be able to celebrate a birthday properly and b) what a difference every person in that room made to my life, I got a bit welled up.  Totally unintentional, but looking around a room full of individuals who mean so much to you tends to do that!

Nobody could escape David that night! Not me...

Nobody could escape David that night! Not me…

Not only that, my whole family were there, including my Nan, who is ninety-eight next January and who is just the most amazing lady.  She is quite the celebrity amongst my friends; everyone adores her and actually I’m quite certain that they came to see her, not me.

...Nor my Mum...

…Nor my Mum…

And quite right too! She’d found it so difficult getting up the stairs at Angel House and we were quite prepared to get her home as soon as she got tired.  But no, she wanted to stay right to the end and join in with the singing and a spot of chair-dancing with David.

..Not even Nan!

..Not even Nan!

I was so proud of her.  She and my parents had helped me to pay for the whole thing too, so without her the whole thing wouldn’t even have happened.  So we had an encore for the band and one last dance.

Shakin' some moves!

Shakin’ some moves!

And then there was no more left to do apart from cut the cake and give everyone some to take home, kiss and hug goodbye to fifty amazing people and help clear up, which rather a lot of the fifty amazing people joined in with, so made light work.  It was, as I said in my speech, the best birthday ever.  Without a doubt.

Winding down one fantastic day.

Winding down one fantastic day.

Not only that, it was the best day of my life.  My head had behaved despite feeling so ill earlier, everyone had turned up, the venue had been beautiful and full from start to finish with the sound of laughter and most of all I had everyone there whom I loved.  And judging from the fifty messages I got the next day on my phone, everyone who had been there had felt the same way and just had the best time.  I highly recommend having a double birthday.  In fact I think it should be made law.  Happy birthdays, everyone!

My wonderful, amazing Nan....and David!

My wonderful, amazing Nan….and David!

The sound of laughing friends and family...priceless.

The sound of laughing friends and family…priceless.

My Dad (he gave up trying to fit his mask over his glasses!)

My Dad (he gave up trying to fit his mask over his glasses!)

My brother Luke (with the curly hair)...great in a 3.45am crisis.

My brother Luke (with the curly hair)…great in a 3.45am crisis.

And I had these to open the following lovely!

And I had these to open the following day…how lovely!

Some Call It Autumn…Some Call It Fall…I Call It Gorgeous.

31 Oct
Hurrah! ‘Tis Autumn!

Sorry it’s been ages since my last post; (actually this post is very late; it was written at the beginning of October but I thought I’d stick it up anyway). I don’t need New Year resolutions. I need monthly resolutions. I get too distracted by things going on to keep my mind successfully to one task for too long, hence the challenge with the Shunt Donation Project (more on that soon).

Conkers and candles...oh, yes baby.

Conkers and candles…oh, yes baby.

For now, my focus is hugely on my surroundings as I don’t want to miss a second of Summer slowly but surely turning the corner into Autumn, because Autumn is my favourite season (followed by Winter, Spring and Summer…in that order). Now I live in the country, I’m surrounded by the browns, oranges, reds and dark greens appearing on the trees and the misty fields in the early mornings.

Lovely colours; they match my hair.

Lovely colours; they match my hair.

Every evening now there is a faint smell of bonfire smoke on the wind and every day my lovely landlord or his wife knocks on my door with an outstretched arm holding a bag of apples/runner beans/tomatoes/courgettes (delete as appropriate). I know many of my friends think I’m a flapjack short of a picnic for listing Summer as my least favourite season (I can’t handle heat! I’m a redhead with pale skin and freckles; heat is not our friend!) but I care not.  Cosy evenings, chilly days, pulling on your knits, drinking hot chocolate every day (low-fat variety, don’t worry), buying pumpkins, butternut squash and marrows at the market and then spending the following four days looking at them taking up room on your kitchen worktop and wondering what the heck you’re going to do with them all…or even how to start cooking them…it’s all. Damn. Good.

Someone had a good harvest this year....

Someone had a good harvest this year….

Every evening at twilight I go either for a walk around the village or a run around the village (depending on my head symptoms).  It’s my favourite time of the day – well, that and early morning.  There seems to be a freaky mist at these times which descends on the hills above the village green and everything gets very quiet.  The only thing you can hear are the birds.

The rolling mists over the rolling hills.

The rolling mists over the rolling hills.

Then you get to skip home (well, I skip in my mind; in reality I walk) and make a hot chocolate because that’s what you DO in Autumn; you go for walks and look at the mists and reds and oranges and browns and you drink hot chocolate and pumpkin spice lattes (not had one yet but I’m SOOO doing that tomorrow in town) and eat things which are comforting (last night I had hot chestnuts roasted in my oven…and hot chocolate).  It’s a virtual snug-fest of all-things-yummy.
I also love Autumn because it houses my birthday.  Which is on the 24th of this month.  Last year (my 40th) was a washout to say the least; I spent the day on the sofa with a raging head following a month in hospital during which I had a very rare and very adverse reaction to having an ICP bolt removed.  I was so ill I couldn’t even look at the birthday cake my family brought me, let alone eat it.  Not exactly how I’d hoped to celebrate the grand entrance into my forties.  This year, however, I’m going to be kicking some serious birthday ass for my 41st.  I am having a party.  A BIG party.  For the last five years I’ve been unwell on my birthday and have usually had to cancel any plans, all thanks to my head.  This year however, I have somehow managed to stay well without the need to return to the hospital!  For an entire year!  Result.  So on the 25th, I shall be making up with five years-worth of pent-up parties, just begging to be unleashed.  It’s being held in my friends home – and it is quite literally the most amazing ‘home’ ev-ah.  It’s called Angel House (have a looksie) and Phill (my friend) has just completed a six year-long renovation project to return it to its original Regency townhouse splendour.  And boy, has he done it well.  It is like stepping back in time when you walk through it and you feel an urge to dress up in fine clothes and talk with finesse.  Phill is a dear friend whom I met about twenty years ago through my brother.  He has always been incredibly supportive and understanding when things have been rough for me medically and ironically, he himself has now become the proud owner of an incurable chronic condition (complicated but all to do with the gallbladder and liver) and faces very similar day-to-day challenges to myself.  His generosity and zest for life hasn’t waned in the slightest, however.  We now compare notes fairly frequently (he won hands down at ‘Beat The Scar’; his post-surgery one was so long he could have done a sponsored walk around it) and I suppose you could say it’s made us even closer than before.  I shall post about the party later, as it happened last week and was, frankly, the Best Birthday Party In The World, Ev-ah.
So today it is Halloween.  I am debating whether or not to buy and carve a pumpkin.  I have a group of friends coming over to mine tonight, all of whom contributed in some way to making the Best Birthday Party In The World, Ev-ah happen.  We’re going to eat the second birthday cake (yes, there were two) and reminisce on the lovely day.  It is not a Halloween gathering, but I feel pumpkin-obliged.  I did one a couple of years ago which I was quite pleased with, but not having the proper tools made it a bit of a mission.

Not bad for a first attempt, methinks.

Not bad for a first attempt, methinks.

But there was a sense of pumpkin pride at the end which I’m kind of craving again today.  We’ll see.  Of course one doesn’t have to go far to get an impressive array of home-grown pumpkins when living in a village.  I love the many little pop-up stalls appearing outside the homes of neighbours with their gloriously-coloured produce, a notice of how much everything is (or a suggestion of how much you might want to pay) and an honesty jar.

I mean, seriously...hard to resist, right?

I mean, seriously…hard to resist, right?

I have learned since moving here that villages = trust.  You’d never find an honesty jar in Brighton.  And if you did, it would last about five minutes before it was stolen.  Anyway, I must away to town to consider pumpkins and carvings and to try and resist buying any more hot chocolate.  Embrace the cold, dear readers and make the most of this fantastic season.  Stay cosy.
P.S: I had to update this post due to the mind-boggling mysterious arrival of the biggest pumpkin I have ever seen in my front garden yesterday.  In the morning it wasn’t there.  At midday I literally looked up and there it was.  It’s so big I can’t lift it at all and I didn’t see anyone come in (it was broad daylight!  Someone must have seen something!) and nobody knows anything about it at all.  Pumpkin fairy…..?


New Year And Only One Resolution. Well, Maybe Two. And A Pressure Change.

7 Jan

Happy New Year everyone!  I hope you all had fantastic New Year’s Eve celebrations and that your hangovers haven’t only just cleared.  It seems to be a bit of a crazy start to 2014, weather-wise; -53° in Montana?  And nearly two weeks of storms here which have resulted in flooding a-go-go.  All we really want here is some nice picturesque snow before the warm of Spring arrives.  Sort it out, jet stream.  My New Year’s Eve was quiet…so quiet I missed it.  Literally.  I had Jools Holland on the telly, was in on my own, struggling to keep my eyes open and was upstairs plumping up the pillows on my bed when I heard screams of ‘Happy New Year!’ and the straings of Auld Lang Syne coming from Jools Holland on the telly.  Whoops.  I missed midnight.  Oh, well.  I wished Hoshi a Happy New Year, had a small glass of Bucks Fizz, watched the London fireworks on telly (it looked very wet, windy and cold out there) and went to bed.  That may sound sad but last year I chose to celebrate New Year on New Year’s Day rather than the previous evening.  And it was one of the best New Year’s ever.  So this year I chose to do the same and lying in my bed at 12.30am, listening to the gale-force winds, driving rain and hail, I was very relieved to be where I was and not at some party trying in vain to book a taxi.  The next day, our planned New Year’s walk across the Downs had to be cancelled; the ground was simply too water-logged to even contemplate it plus it was terrible weather.

Flute, Swedish bagpipes, guitar and a long horn-thingy.  Always an interesting musical mix at Paul's!

Flute, Swedish bagpipes, guitar and a long horn-thingy. Always an interesting musical mix at Paul’s!

  Instead, we (‘we’ being the group who celebrated together last year by walking across the Downs) decided to head to my friend Paul’s cottage in the country.  It was great.  We brought food, they supplied drink (all non-alcoholic as Paul doesn’t allow booze in the cottage) and we spent the day being all cosy and warm whilst the storm howled outside, playing lots of the musical instruments that line the walls of the cottage.  Paul is an amazing musician, as are many of his friends, so it always makes for a musical gathering (watch a bit of it here!).  I had a go at the cello; my friend used to play it and I’ve always fancied having a go but coming across cellos to ‘have a go’ on isn’t easy….unless you’re at Paul’s cottage.  Of course he has one.  Only about eight of us managed to get to Paul’s in the end (he’s in a very remote location and the weather was, frankly, shit) but it was a lovely start to 2014. And not a sniff of a hangover.

See everything on the hanging on the walls and around the side of the room?  All musical instruments!

See everything on the hanging on the walls and around the side of the room? All musical instruments!

I haven’t bothered with New Year’s resolutions because I only have one focus this year which is, I know already, going to take up the majority of my time and energy.  So I’m not going to try and lose weight (well I’m not overweight anyway so that’d be a bit daft), stop smoking (I don’t smoke), cut down on alcohol (not been able to drink wine since last August – head doesn’t like it at the mo) or any of the usual resolutions.  I spoke to Kim Nguyen Browne of the Vietnam Volunteer Network recently; she’d been pretty ill for a long time and was due to be in Vietnam right this moment, speaking to the government to help Lewis and I with our proposal.  As it is, she’s here recovering, poor thing.  She said that in the light of how her health is, it might be more time-effective for me to deal directly with the Vietnam Government.  Gulp.  Don’t get me wrong, I am more than happy to do so to help her out and if it means we’ll get the information we need more quickly.  But I am also extremely nervous about doing so as I don’t know how they ‘work’ if you get what I mean.  Speaking to top-level governments about things they are doing wrong isn’t something I do every day, really.  I am meeting with Kim in a fortnight to have a crash course in schmoozing effectively with Health Ministries staff to get the information I want from them.  If I have to bat my lashes, I will do it; if it means getting the figures we need.  Kim also has a brain scan for me from Vietnam, which Lewis is particularly keen to get.  It is of a little girl born with only half a brain who was successfully shunted at Go Vap Orphanage.  Often this sort of complication is overlooked or deemed to be too ‘difficult’ and the child is left to die.  Lewis, being a top neurosurgeon, wants to see examples of scans which have been deemed as too ‘difficult’ to treat to see if that is really the case, or if it might be a case of – shockingly – laziness on the part of the medical staff out there.  It does happen.  Quite a lot, apparently.  If we can prove that these children can be treated successfully, that we can help make it cost-effective as opposed to nursing them in institutions until their deaths and above all else, that it is WRONG to just leave them when the economy of Vietnam is currently extremely healthy and thriving – shame these children aren’t doing the same – then we may be able to bring about change, at least in attitudes towards disabled children over there.  So….meetings in two weeks with Kim and Lewis and then it’s Approach The Government time!  My head had better behave.
Actually, I’ve re-thought the ‘only one resolution this year’ and I think I may actually have two resolutions; my second is to stay in contact with friends.  I have lots, I stay in contact with most of them very regularly – but some not so regularly.  Not because I don’t like them but simply due to the busy-ness of life.  But hey, I have a mobile, Skype, email – there’s really no excuse.  So making time for more conversations and meet-ups will also be a priority.
Head-wise, I’m going for a pressure reduction next week (from setting 11 to setting 10) as standing upright after sitting for any time longer than forty-five minutes is proving to be quite a problem.  I can’t tolerate the pressure change that goes on!  It’s fine when I’m at home but out in public it’s embarrassing as it makes me stop in my tracks and I have to breathe very slowly and steadily to try to bring it under control.  So I’m guessing it’s still too high for me.  It’s a long, slow process but as long as I get there eventually, what does time matter?

Friends And Fresh Air….The Only New Year’s Party I Want.

30 Dec

Ah, here it is again….a new year.  Now I am forty, I feel confident enough to say (quite honestly) that I really don’t care for New Year’s Eve.  I’ve celebrated it in various means over the years; clubbing in my teens, house parties in my twenties, restaurants in my thirties….now I’ve at last reached my forties I am determined to celebrate it in the way I want to, rather than the way I feel I should be doing so.  Not to say that I haven’t had many good New Year’s Eve parties.  But to be honest, there have only been a couple which I truly loved; the other times I could happily have stayed home rather than be out in a club so loud I couldn’t think, queuing for an hour to get a drink and standing in the pouring rain at two in the morning waiting to catch a taxi which I knew before stepping into it was going to cost me about thirty pounds. As I got older, I found myself gradually resisting the pressure to do specific things on New Year’s Eve.  As a result, I enjoyed myself far more.  One of the best parties was a Regency-themed one that my friend and I organised.  We were all fed up with clubs and packed pubs where you couldn’t even sit down all night so we all agreed to have a house party.  But a refined, genteel house party.  Regency was the order of the day.   Oh, boy did we do our research!  We insisted that everyone come in full fancy dress and everyone did.

Me and a handful of my Regency counterparts.

Me and a handful of my Regency counterparts.

The men all had stick-on sideburns and wore breeches, the women all came armed with fans.  We had learned dances from the BBC adaptation of ‘Pride And Prejudice’ (the ONLY version worth watching with Colin Firth as Darcy) which we taught to everyone.  We projected selected episodes in a loop onto one of the walls (on mute) and whenever the dances at the ball came on the screen, we all dropped everything and joined in. I should point out that the women also dropped everything and stared, chins dragging on the carpet, whenever Colin Firth climbed out of the lake as Darcy in his wet shirt.  And whenever he was dancing.  And actually, whenever he was actually on screen.  Having a floor-to-ceiling projection of Colin Firth in breeches is rather distracting full-stop.

Excuse me whilst I take an hour from my day to

Excuse me whilst I take an hour from my day to just….er….drool.

  After midnight we went onto the long lawns in front of the house (it was opposite the beach on the promenade) and had a series of races, copied directly from those actually staged at such events in the Regency period.  They were used to display the physical skills of the men!  It was such a fun party and we never repeated it, for fear that it wouldn’t match up.  However, in recent years my desire to ‘party’ – Regency or otherwise – has waned somewhat.  Honestly, by midnight these days I’m pretty much worn out!
So last year (or is it this year?  Which side of the coin does midnight on December 31st fall?) I didn’t do anything at all.  I stayed in with Jools Holland and his Hootenanny on the television (always a good’un if you’re in for NYE) and was in bed by 12.15am.  The next morning I was up fresh and early, ready for a long walk over the Sussex Downs which had been arranged by a good friend, Paul.

We aren't really that tall and skinny.  Alas.

We aren’t really that tall and skinny. Alas.

Paul and I lived together for eight-and-a-half years.  Well, I say ‘lived together’; it was like the set-up on ‘Friends’.  We had apartments next door to each other, we were the only two tenants in that part of the building and our front doors were permanently open during the day so we could wander in and out of each others apartments as we wished.  It was like having a room-mate but with privacy when needed.  It was perfect.  Paul knows me very well and was there for some of my most awful months of being very ill indeed with hydrocephalus.  On more than a couple of occasions he rushed me up to hospital in London.  We both suffered from insomnia at that time so would go to all-night shopping stores at four in the morning for something to do.  I look back at those years living with him with nothing but joyful memories so to celebrate the New Year with him indeed feels like a special event.
So we met outside Bill’s Cafe in Lewes around midday – about twenty of us, adults, children and dogs – and disappeared merrily into the hills.  It was a beautiful, glorious day. can't beat the fresh air!

Ahhh…you can’t beat the fresh air!

I only knew a handful of the party when we set off but by the time we were returning I knew them all.  We ascended to the top of a hill where we had a fantastic panoramic view and then descended to the valley and the village of Glynde, where one of the party lived.  Shoes off at the front door, we all piled into her amazingly cute little cottage and had tea, coffee and home-made cake, whilst resting our weary feet.

Some of us in the cottage (the rest had gone to the pub!).  Paul is seated at the right in the white shirt.

Some of us in the cottage (the rest had gone to the pub!). Paul is seated at the right in the white shirt.

Then we all got the train back to Lewes, hugged each other and bid each other a Happy New Year, and made our respective ways home.  It seemed to me to be the perfect way to celebrate a New Year; to spend the first day of it in nature, with a crowd of happy people and animals, walking, eating, drinking, talking….basically a party without the booze and the hangover next day!  So this year we are doing it all again.  I shall update with photos from that walk on New Year’s Day.  The weather isn’t going to be as kind to us; it’s currently raining and raining and raining.  But we are going.  Because mud or no mud, you can’t beat a New Year’s Day party in the open air.  And if we happen to stumble across a Darcy-esque figure in a wet shirt, so much the better.

Er, Excuse Me….But Where Did The Year Just Go?

5 Dec

Sorry I haven’t updated for yonks, but I had forgotten during my nearly-two-year-surgery-break how long a recovery takes!  Because I didn’t end up having a massive surgery I thought I’d bounce back quickly but the very unexpected deterioration after having the ICP bolt removed obviously made its impact known.

'Helping' by sleeping on the decorations.

‘Helping’ by sleeping on the decorations.

I can’t believe it’s December; the year seems to have had a ‘blink-and-you’ll-miss-it’ effect.  I’ve had two more trips back to hospital since I left; the first for another pressure adjustment (downwards) and the second one just a check-up to discuss things.  The plan is to leave me alone over Christmas and the New Year (hurrah!) and try another adjustment in January.  I’m currently on setting eleven; my surgeon thinks I’ll end up somewhere around setting eight.  Funnily enough, when I was on setting eight before, between the end of 2009 to 2010, it was the best I had been.  That was before two shunt infections decided to have a bit of a party inside me and to royally screw everything up.  But that setting eight period – it was indeed good.  So fingers crossed I’ll get back to that place but it’s going to take about six months to a year apparently.  You can look at that one of two ways; six months to a year of feeling ill, tired, nauseous and frustrated.  Or six months to a year before I’m back to my best-ever physical state.  Can you guess which viewpoint I’m going to adopt?
I had another meeting with Lewis Thorne last week too; I like his working style – he was wearing jeans with very funky Argyle socks pulled over the top and no shoes.  A man after my own heart; comfort equals a productive work day.  When I’m working from home (which accounts for ninety per cent of the time), I wear slippers and lounge wear.

See?  I wasn't kidding.

See? I wasn’t kidding.

Stylish of course – I can’t work if I look and feel like a slob (which is never, just for the record!).  But the second I come in from a meeting, I strip off my smarter work clothes and get comfy.  It’s a bit like a cluttered home reflecting the state of your mind.  I’m a bit of a minimalist as I cannot stand clutter.  I have enough furniture in my home with ‘touches’ to feel homey and cosey.  But that’s it!  Anyway.  Back to Lewis and his socks.  We had a good chat about everything and went over the more problematic areas of the shunt donation scheme.  Lewis is brilliant at making things seem do-able.  I asked him if he thought I was worrying unnecessarily about one particular issue and he said yes.  I kind of knew that all along but it’s good to have clarification!  We each have our ‘homework’ list of things to get on with and will meet again in January.  And I think this time I’ll take my slippers with me.  We did have a moment regarding the proposal for the Vietnamse government where we looked at each other with realisation of just how big a task this was going to be.  We may be passionate about this but we are also realistic!  Just getting hold of the information we need in order to put together the figures for a water-tight proposal to really persuade the health ministry to invest in the treatment of these babies and children is not going to be easy.  And of course there is no guarantee that it will work.  But nothing ventured, nothing gained.  I shall update more when more has happened because at the moment it’s just lots of phone calls, emails, figures and reports which is on the face of it pretty boring!
So it’s December, it’s nearly Christmas, my decorations are nearly done (bought the wrong-size tree lights so need to get the right ones today) and I’m loving the Winter weather, cosy evenings and candles.  I’ve decided to do the Photo-A-Day Challenge for December; my friend Jolene does it often and I always think ‘I really must do that sometime’.

Day 1: Red.

Day 1: Red.

Then I go to the fridge and see Mr Samandouras’s quote (written on a Post-It) stuck on my fridge; ‘you know how they say “good things happen to those who wait”? Rubbish!  Nothing happens to those who wait! Good things happen only to those who take action.’  Having a chronic condition can make one more prone to procrastination – well, it is hard sometimes to get all motivated when you actually feel like throwing up – but it’s just a case of frequently referring to quotes like that to keep your mind on the ball.  The photo challenge is detailed here ; you simply take a photo a day based around the one-word description set for that date.  Sometimes you have things to hand so it’s quite easy.  Sometimes you need to use your imagination a little more.  So I started it on December 1st.

Day Two: Where I Stood.

Day Two: Where I Stood.

And I’m just finding out how difficult it is to take a photo a day when you have a Burmese cat around who a) always wants to be in shot and b) always wants to be in shot.  What I have also found out is that doing it really makes you view the world in a different light.  You start to look at your surroundings and try to figure out if they’d work as a photographic composition.

Day Three: Silver.

Day Three: Silver.

As you can see, Hoshi insisted on being in shot on the second day.  She doesn’t like candle flames so the first day was easy.  I’d already removed her three times from that bannister as she was ruining the angles and lines I liked in that shot; in the end I gave up and just let her sit there and scowl at me.  I’m yet to upload yesterday’s and today I don’t know what to do; the title is ‘In The Cupboard’; all I have in my cupboard are tins, teabags and a loaf of bread!  Thinking cap on.  I’m very tempted to let Hoshi have her way with this one and just let her get in the cupboard.  But that would be too easy.  Shame I don’t have access to a fake plastic skeleton…….

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