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Timing Is Everything!

January 13, 2021

My little lockdown companion. She sleeps strangely and I love her.

It’s 1.00pm. It’s Saturday, 9th January 2021. I’m sat on the sofa with Hoshi the cat sprawled half on me and half on her heated throw as she’s still undecided as to which is preferable. I’m watching the news whilst typing this and I think I’ve done this every day for 10 months now. The news changes. Life in its daily form does not. How are you all doing? I hope everyone is as alright as can be and finding a way through all this. I thought I’d get in touch and say ‘hi’, now that I’m well on the road to recovery from my dose of Covid and feel a little more up to writing. My apologies to all of you who have got in touch with comments and questions in the past 10 months. I am working my way through all of them and you’ll see them appearing on here over the next few days if you’ve not yet had yours published. It’s always good to hear from you!
I ended up having ‘long Covid’ – and boy, was it long. Nine months of real unpleasantness. The cough still returns on some days as does the crackling in my right lung, where the blood clots are. But the crushing fatigue and bone pains have pretty much gone although I have to watch what I do. I just feel very lucky to have recovered, especially with the statistics spiralling upwards at the moment.  I’m very glad to know the vaccines are here and being administered (my Dad got his on Sunday and my Mum will get hers early next month). I won’t likely get mine until the Autumn so for now I’m being super-duper careful in my efforts to not get reinfected, which is a total possibility so far down the line after my initial infection.  Like so many other single people, I’m literally at home all the time on my own apart from going out for a run, which I’m trying to do every week now to slowly build my strength and stamina back up. I live alone by choice at the moment so I’m used to my own company, but I’m definitely missing my work colleagues and daily communications with other people. I must say, however – to all parents who are homeschooling their children throughout these lockdowns – I HOPE AFTER THIS ENDS YOU ARE ALL AWARDED MEDALS.
This to me feels like my first ‘proper’ lockdown. I was far too ill during the first one to participate in anything, do any Joe Wicks workouts, watch any Netflix, bake any banana bread or do any Zoom quizzes.

I made these when I was feeling better. Then I gave them all away because I live alone and I have no willpower and no good can come from having a plate of these in your house when you’re in lockdown.

The months passed by in a blur of intense coughing and fatigue, hospital and doctor visits, severe insomnia, countless courses of (useless) antibiotics and regular socially-distanced visits from my brother and his girlfriend who would sit in the front garden to give me some much-needed company and meds. This lockdown, I’m well enough to be bored which is actually a huge relief.  My workplace is closed for the foreseeable future so whilst furloughed, I’m trying like everyone else on Earth to find some routine and purpose for my days. My new activities include;

  • Yoga with Adriene
  • Baking banana bread (and cakes)
  • Regular Zoom sessions
  • Watching Netflix
  • Catching up with work for my charity

Basically, everything that everyone else was doing during the first lockdown. I am so unoriginal. Although I am also teaching myself Salsa on Youtube (minus a partner, the position for which I’m hoping will be filled by a tall, dark, handsome-ish type who makes me laugh so hard I want to wee and who will miraculously find his way to me in the middle of a global pandemic when half the world is in lockdown because in my head that’s completely possible).  I’m quite enjoying Yoga With Adriene; I can touch my toes and everything.

Yep, that’s EXACTLY how I look when I do this position! *
*I’m lying.

Adriene is brilliant and can bend into positions I thought were only possible for paperclips. Doing yoga with a cat in the house is literally impossible, as any fellow cat owner will tell you. For every Downward Dog I do, there will be an Upward Cat, licking my nose and purring.

  The only other eventful thing happening in my life is that my shunt, after nine years of impeccable behaviour, has decided to retire in the middle of a global pandemic when half the world is in lockdown and hospitals are overrun because OF COURSE IT WOULD.  The surgery to replace it was cancelled last Spring, the upcoming appointment to see if a pressure adjustment might see me through for a couple more months has just been cancelled and for now, it’s just a case of trying to manage the symptoms and get myself to a hospital if things reach emergency-levels.  The hospitals are just too busy to see me. I’m having regular telephone and email contact with my surgeon and his team and feel fully supported by them, as always. The only thing I feel bad about in this situation is the predicament of the NHS staff; every single one I’ve spoken to over the last few weeks and months has, without exception, sounded exhausted in a way I’ve never heard before.

These guys – both of whom have operated on me countless times, doing their time in the Covid ICU (on top of their neurosurgical work). Heroes.

I’ve come to know so many of them so well over the years that I also worry about the risks they are taking daily but so far, none of them have contracted it due to the good PPE they are lucky enough to have access to.
So, for now, it’s a strangely familiar but not-too-welcome routine of dealing with overdraining symptoms; drinking litres and litres of fluids – but rarely going to the loo which is really weird – caffeine as late as I can in the daytime to increase the pressure in my brain, lying flat if it gets really bad and waking in the night with headaches that painkillers just don’t seem to be able to stop. Then I’ll get a day where everything seems pretty okay and I’ll get all hopeful that maybe the shunt is actually working fine, only for the day after to be back to the aforementioned routine. That’s slow shunt failure for ya! From previous experience, my shunt rarely packs up suddenly (knocking on SO much wood, here) and simply gets more and more clunky until leaving it in is simply no longer an option. We try to act before this stage as I end up far more ill and having a far longer recovery as a result. But this time, I have a feeling we may end up on the unfavourable side of waiting and if that ends up being the case, it’ll all be fine. It’s life; sometimes it goes the way we want and sometimes the rug gets pulled from under your feet and you’ve just got to find your balance and wobble along for a bit. And the whole world has had to do that this past year. I wish you all well, pray you all get through this Covid-free and as a parting gift for this post, I refer you to the legendary Dolly for words to live by:

She rocks. If you disagree, don’t tell me. It won’t end well.

Have You Tried Switching 2020 Off And Back On Again?

March 21, 2020
No, I did not stockpile. That is honestly all I have.

No, I did not stockpile. That is honestly all I have.

Yo. Long time no write.  I hope you’re all as well as can be and holding up okay under what has been the most surreal start to a year.  Brendan, Ciara, Dennis, The One-We-Unofficially-Named-Emily and Jorge have all gatecrashed our UK weather party and frankly overstayed their welcome. It’s a bit strange to have a weekend without a named storm, to be honest. We’ve waved goodbye to the EU (no I’ll never be okay with that and I still can’t believe it) and now Coronavirus is weaving its way through the world, triggering mind-boggling behaviour with people buying so much loo roll that you really have to wonder what the heck people are eating if they feel that 36 toilet rolls should be sufficient for a few weeks potential quarantine.  All this and it’s not even the end of March yet.

Talk about timing…

Clearly my shunt has been feeling in need of the limelight too, so has decided, after nine years of near-perfect behaviour, to retire. At the best of times, this would be a drag. Expected eventually, yes, but still a bit of a drag. But to have it coincide with the single biggest health threat to the entire planet in decades is, to put it mildly, slightly inconvenient timing.  Our beloved NHS has been struggling with bed and staff shortages from ten years of austerity cuts and now it has the seismic task of accommodating potentially thousands more seriously ill people.  I am certainly not alone in my situation; I have joined the thousands-and-thousands-long queue of those whose operations have been cancelled and who are simply going to have to manage difficult symptoms as best they can until – well, who knows until when?  However, my concerns now lie with the whole world staying the heck away from this virus. My close friend has been officially diagnosed and falls into the ‘high-risk’ category, having recently had a liver transplant. So what does he do?  Skips off to Switzerland for a skiing holiday, falls over, breaks a rib and then contracts Coronavirus along with seven others out of his party of ten. Yeah…probably didn’t want to do that, bruh.


He called me last night after days of texting (he couldn’t speak for days) and it looks as though he’ll pull through without having to go into hospital. I cannot tell you how relieved I was to hear his voice. He said it was ‘really something you don’t want to go and get’. This from a man who was ill enough to warrant and go through a liver transplant.  Noted.

So we high-risk or no, bro?

 So – fellow shuntees and hydrocephalus people – you’ve probably also been wondering if being shuntees and hydrocephalus people places you at a higher risk of serious illness if you contract Coronavirus. And like me, you’ve probably been Googling for answers and coming up with – nothing, really. Underlying conditions are more risky.  We have an underlying condition.  But it’s not specifically listed. Therefore is it risky? And round and round we go.

To get some clarification, I contacted three members of the neurosurgery department at the National Hospital in London (one of them my own neurosurgeon). They all got back to me within three hours of each other. Honestly, you wait nine years before having to consult your neurosurgeons with problems again and then three call you up at once.

Here is what they all said.  Of course, none of this is definite.  It’s just likely, based on their wealth of experience and what they know of the virus so far – straight from the horse’s neurosurgeon’s mouth:

  • The shunt itself is highly unlikely to be affected by the virus.  
  • There is nothing about having a shunt which is likely to make a person more likely to catch the virus or be seriously ill if they did. Any serious complication would be likely to come from other underlying health issues, such as diabetes, heart disease or a lung condition which increases the possibility of pneumonia developing.
  • Getting coronavirus is likely to make hydrocephalus symptoms worse (headache, tiredness) but those symptoms are unlikely to be dangerous. It still seems to be pneumonia causing lung complications which lead to serious cases.

Do read this article from the Hydrocephalus Association too: COVID-19 Information. It’s a good and reliable summary of information and advice.

Personally, I’m playing this situation on how I usually respond to getting a heavy cold or ‘flu;  I’ve ended up in hospital twice from heavy colds gunking up the CSF and causing the shunt valve to pack up. Plus my head pressures get SO bad when I’m ill that I can imagine it’ll be the same if I get this virus. So I’m staying the heck away from people and in doing so, hopefully the heck away from a much-needed hospital bed. I recommend that if any of you are concerned, you contact your neurosurgeon. They are super-busy right now but they’ll get back to you. Mine reassured me with ‘we’re still here, Jordan. We can’t help you as soon as we’d like if you’re not a serious case but we will as soon as we can and we will if your condition becomes serious’. You can’t ask for more than that. This is why I love the team I have so much.

Ah, floor…how I’ve missed you.

So for the next 6 months or so, I’ll be lying flat a lot (seems I’m overdraining). At work, my colleagues were getting used to walking in on me a couple of times a day, lying flat on the floor like a sardine, doing emails.

I’ll be down here if you need me.

Lying flat literally fills my head back up and then I’m okay for another couple of hours. It’s been nine years since I last had to do all this so although I’m a little out of practice, it’s all coming screaming back to me!  Caffeine also really helps low-pressure symptoms so after the same nine years of not touching the stuff, I’m now having to drink about five cups of caffeinated coffee a day. To say I’m having the shakes a bit as my body gets used to it would be an understatement. Sorry, bod. You’re just going to have to keep up as best you can.


I know these are worrying times. Everyone has their own story. Every person has their own concerns about their loved ones, their job, their own health. We just have to muddle through this and look out for each other along the way. Today my brother, his girlfriend and I started a home shopping/delivery service for the elderly and vulnerable in our local area. I’m dropping the leaflets and taking the orders, my bro and Maxine are doing the shopping, I’m dropping it off to the villagers.  All done with gloves, antibac gel, lots of distance and (where possible) washing of bought items before we deliver them. That may seem a little excessive but we’re not taking any chances.  The couple we delivered to today had been panicking about what to do so check in (if you’re able to) with your neighbours. Alleviating worry can be so easy to do and mean so much.

Stay in touch, y’all.  I have everything crossed that you and your loved ones will all be okay.  And if it all gets a bit much, have a lie on your carpet, switch on yer Skype and let’s have a floor party.


Humour And Healing; Link To The Live Audience Q&A I Did In August

September 7, 2017

Sorry for the delay folks!  This video had to be taken down to edit something out for a couple of weeks so I couldn’t access it until it was finished.  If you haven’t seen the film ‘The Big Sick’ I’d really recommend it; it was so much better than I’d anticipated and really addressed many issues which I think we all face from time-to-time in our hospital/illness experiences!  Dr Khalid Ali is a lovely guy; such a pleasure to be able to do this with him.  We had many people watching from all over the world as it was streamed live and it was a big surprise to meet one of my blog readers afterwards who’d come along specially…so lovely to touch base!

Anyway, hope you enjoy this…and no, I had not idea I move my hands and arms so much when I’m speaking!!  Next time I shall be sitting on my hands….

Here’s the link:

Humour And Healing; Live Discussion

Jordan xx

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

January 7, 2014

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?

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

December 5, 2013

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…….

I’m Forty Next Month. I Have A Par-day To Plan. Help.

September 1, 2013

Er, excuse me, where did the year just go??  I am forty next month and I have not completed my F-List.  This is not on.  To make things worse, my shunt has decided to malfunction.  Great timing, as always, Shunt!  I had planned to go to Paris in September (it’s on my F-List) but now I can’t leave the house, let alone leave the country. 

This is where I wanted to be on my fortieth.  I love it here.

This is where I wanted to be on my fortieth. I love it here.

Maybe I’ll just have to be creative regarding that one. I have decided to start organising my fortieth birthday plans now.  Because October is galloping up behind me at alarming speed and my gut is telling me that I am almost certainly heading for head surgery of some sort.  So best to crack on with it now rather than wait and find myself in hospital, rather poorly and with no energy to organise a wash, let alone a party.  I am now trying to decide what to do to celebrate what has turned out (rather surprisingly) to be an important birthday to me.  Here’s why it’s important:

  • I’m grateful to be able to celebrate a fortieth birthday.  Not that every time my shunt fails I think I’m going to die – I don’t.  But in the last thirteen years I’ve had nineteen troublesome brain and stomach surgeries, two shunt infections, a blockage, collapsed ventricles in the brain, my brain fluid leaking down my neck (it really shouldn’t be on one’s neck) and a couple of genuine moments where I did, momentarily, find myself thinking; ‘hmm, this feels dangerous.  I wonder where this is going to end up?’.  Having genuine uncertainty, even if it’s fleeting, as to whether you’re still going to be alive in a couple of days is rather odd.  Also, probably more obviously, the work I’ve done on my shunt donation project has taught me that I am actually very, very, very lucky indeed.  Life should be celebrated.
  •  I want to throw a nice party to thank my family and friends for helping over the years.  I know what they’d say to that; ‘that’s what we’re here for!’.  Well, yes it kind of is.  But that doesn’t mean I take it for granted.  The only way I can stay positive when I’m very ill is because of them.
  • Last year’s birthday was a washout.  I was so ill, I couldn’t even stay to my own party.  I ended up in bed by 8.30pm.
  • Although people may not see it this way, I’ve had a cracking first 39 years.  I had a wonderful childhood, a pretty normal teenage existence (stroppy, spotty, thought I knew everything but still secretly loved hanging out with my family even though it was criminal to admit that), some very blessed years in my twenties working at Nick’s Music Studios which was the best job I ever could have asked for, and even though the years since then have been challenging, I’ve learnt a lot.  I wouldn’t change a thing so far.  Even the hydrocephalus bit.  I have often said that if I were given the choice of going back to my life at 26, when I was diagnosed, and having the option of either NOT having hydrocephalus but staying in my life as it was at that time, with that boyfriend (we were about to sign a mortgage and probably would have got married), that job (before I worked at Nick’s Studios) and that perfectly-fine-but-unremarkable existence OR having hydrocephalus and ending up where I am now (single, only able to work part-time, feeling physically rubbish much of the time), I would without hesitation choose the latter.  I prefer who I am now.  I’m genuinely happy.  Hydrocephalus and all.

So I feel I have lovely things to celebrate and lovely people to celebrate them with.  But what to do?  It’s hard to plan a big party when you’re feeling so ill you can’t function after 2pm and your memory is like a colander.  I have no idea of what is going to happen be done regarding my head; I know they want to do ICP monitoring but what comes after that is anyone’s guess.  I have pushed my party back to 10th November at the moment..I am hoping that if I do have to have a sizeable surgery, this will allow me to recover enough to attend my party!  Here are the options I am considering:

  • Hiring a boat on the River Thames and having a floating party, with live music from my friends-in-various-bands.  It would be a four-hour cruise past all the major sights and back again.  It would also be pretty expensive.  But fun.
  • Hiring a venue down here (by ‘here’ I mean Brighton as that’s the nearest large city to me and has the most options) with – again – live music and good food.  It’s cheaper and it’s easier to accomplish if by any chance I am ill on the day.  I could still go for a few hours whereas getting to London from here and then partying and then getting back when your head pressure is off is not really that enjoyable.
  • A cocktail party at mine; it’s big enough and I have a 1950s cocktail bar that I bought on Ebay when I moved out here.  The downside of this is that I cannot leave if I feel unwell and it’s a lot of organisation/preparation/clearing up, which isn’t easy when you’re ill.

I had wanted to spend my fortieth in Paris but that is now impossible.  I wondered about having a Paris-themed party instead, with French food, French music and French decor.  I need some suggestions if anyone has any.  Please feel free to list them below!  My aching head would be grateful for them.  xx

Sniffing Out A Good-‘Un (or ‘My Perfume Obsession’)

July 4, 2013

I didn’t intend to include anything in this blog which isn’t either on my F-List or which isn’t to do with hydrocephalus.  But actually it’s quite nice to have something to write about which a) doesn’t have an October 24th deadline hanging over it, as items in my F-List do and b) which isn’t about medical issues, sickness and surgery.  And hey, it’s my blog.  I can write whatever I like!
I do believe that everyone needs a little indulgence in their life.  It doesn’t have to mean spending loads of money, but it does mean having something you enjoy that feels special, a treat – something that generally doesn’t have any purpose other than making you feel good and relaxed.

New perfume (present from my generous and lovely brother) and a glass of wine (present to me from me) to celebrate the first shunts going to their proper owner!

To me, this is the ultimate in self-indulgence.  Wine and a new bottle of perfume.  Naugh-ty!

It’s so easy to worry about money (especially at the moment – and with very good cause) and I do feel that as a nation we’re very good at working hard but feeling guilty about indulging ourselves, whether it’s going on a holiday, buying a new pair of shoes, getting the latest iphone, buying a bottle of wine or even a slice of cake – whatever floats your boat.  We can extol the virtues of the free joys in life  – spending time with family and friends; watching a beautiful sunset; swimming in the sea – until the cows come home but when it comes to a treat which involves parting with money, I think we tend to feel a bit sheepish about admitting to doing it.  Obviously, I’m not talking about buying expensive treats all the time and running up debts on credit cards; I’m talking about keeping them as little highlights to look forward to and to pick you up when things are feeling a bit glum.  As I can only work part-time due to the hydrocephalus, my income is – ahem – ‘modest’ to say the least.  As a result I tend to be careful with money.  Not stingy – just careful.  There is no use running up debt to my mind because my circumstances don’t exactly allow me to be able to pay it off!  When I was ten, I formed a club with my friend Daisy, who lives in London.  We called it the ‘Secret Savers’.  Just why we thought it was ‘secret’, I’ve no idea; everyone knew about it and we made little paper badges with ‘SECRET SAVERS’ emblazoned across them in neon pink felt-tip pen.  Hardly hush-hush.  But when you’re ten, most things have to have the prefix of ‘secret’ before them.  We would save our pocket money for months until a planned day when we’d be staying with each other – usually during school holidays – and use the money to spend on a big treat together.  It was pretty good actually; we saved for and bought two tickets to go and see ’42nd Street’ at the Theatre Royal, Drury Lane when I was staying with Daisy during the school Summer holidays.  I think they were about £26 back then but they were fantastic seats.  We went by ourselves, feeling very grown-up and important.  The next ‘meet’, when it was Daisy’s turn to stay with me, we saved for a shopping spree in Brighton.  We had lunch, bought some clothes in Tammy Girl, went on the Palace Pier and had a generally fantastic day, feeling very grown up.  Unfortunately, when Daisy and her family had returned that evening to London, I was violently ill from the posh fresh cream chocolates we had bought from a chocolatiers in town; they may have been posh but the ‘fresh’ cream had been anything but that.  We managed to save like this for a few years; needless to say, our parents actively encouraged it!  When I eventually started earning my own money (at a small gift shop which sold specialist paperweights in The Laines), I instinctively put some away each week.  I didn’t need to think about it; I had simply been doing it from the age of nine.  I didn’t have a separate bank account for this; I just had a pot hidden at home where I’d stash extra money until I could pay for whatever it was I’d been saving towards.  Once I had enough for whatever (Bros concert tickets were one of the ‘goals’ – cringe!) I’d pay for that ‘goal’, empty the pot and start all over again with a new one.  This way, even when I didn’t really have any spare money at any one time to afford luxuries or treats, I knew that in a few months, I would be able to get those new shoes/go to that gig/go for the weekend to Paris with Kate.  It was something to look forward to.  And I still do it to this day. Only now I don’t stick it in a pot at home; I do have a separate bank account!
For the past year, my saving fund has been for the one thing I could spend an absolute fortune on, were I lucky enough to earn loads of money: perfume.  Perfume is a part-hobby/part-obsession for me.  I’ve always loved it.  I think partly because I truly have a massive nose; having one this size would be a bit daft if I didn’t like smelling things.  May as well put the thing to good use.  The first perfume I wore as a teenager, around the age of fourteen to sixteen, was Mum’s  L’heure Bleue by Guerlain.  I would beg a spritz before going to Oriana’s Nightclub on the beach (fake ID in tow) and that smell always reminds me of her and – more trashily – those sweaty, loud but fun nights at Oriana’s.  I think this is why I love perfume as a concept in itself; the thoughts, feelings and memories that scent can produce.  I know that sounds a little bit poncey and in no way do I want to become one of the many perfume reviewers on various perfume blogs and sites who, instead of stating whether they like the fragrance, how they find the longevity and sillage (how it wafts around you so others can also pick up on it) and what perfume notes they can detect, choose to write some weird story instead, as in this recent review I read for Caron’s ‘Tabac Blond’:  ”The nights at the ‘bar-tabac-bierre blondes’ are long, and though perhaps not what they should be or once were, in a world turned upside down, on a weather-beaten winter’s night, they are without doubt the best show in town. For their part, the women ranged against the creme Anglaise coloured walls, dresses polka dotted pinks, blues and violets smell sweetly of last summer’s improvised flower water, iris and a little citrus blossom, and of the musk of their profession, the oldest.” – gaaaaah!  STOP IT!  Each to their own and maybe I should embrace their creativity a little more but in truth it makes me want to hide my head behind a cushion instead of continue reading.  And it certainly doesn’t make me want to smell the perfume.
When I was fifteen, I also discovered LouLou by Cacherel; I was seduced mainly by the television advert showing for it at the time – the one where the girl looks up from her dressing table, doe eyes gazing at the camera and says, in a melted-chocolat French accent, ‘oui? C’est moi’ in response to the faceless but oh-so-sexily-voiced male purring out ‘Loulou’ repeatedly (solely for the purpose of reducing female viewers to a melted heap on the carpet).

"Oui?  C'est moi"...unfortunately that is not moi.  I just wished that it had been.

“Oui? C’est moi”…unfortunately that is not moi. I just wished that it had been.

It is a strong scent; it is based around the scent of the Tiare flower, which is a very sweet Tahitan symbol of welcome.  It also has plum, blackcurrant, orange blossom, vanilla – all very foody (or ‘gourmand’ as perfumistas like to call them) notes.  It is rather a ‘Marmite’ scent; people do seem to either love it or hate it.  I loved it.  And it suited my perfume-drinking skin.  I absorb perfume like blotting paper.  It’s seriously annoying.  Within an hour- sometimes as little as half an hour –  perfumes can vanish from my skin completely.  I have tried all the suggested tricks; making sure my skin is moisturised and not dehydrated, spraying perfume onto my clothes to make the scent linger for a longer time (this sort of works depending on the perfume; some just smell musty once sprayed onto fabrics), spraying it into my hair, hair being another apparently good perfume-retainer.  It has been tempting to give it up but I love perfume too much.  When I was nineteen, I bought a bottle of Cabotine De Gres by Caborchard.  Released in 1990, I had been smelling it on a couple of friends for some time and always wondered what that wonderful smell was.  That Summer, I went to the Czech Republic with my parents to visit my brother, Luke, who had gone out there to teach English at a little school in Brno.

Very green, light and lovely.  Pretty bottle too.

Very green, light and lovely. Pretty bottle too.

It was an odd trip; we went by coach and boat (it took about thirty hours but it felt like a month) and I was by far the youngest one on the trip.  It was a sticky, hot two weeks and this being before the days of GHD’s, my naturally curly hair simply couldn’t handle the humidity and grew in size day by day until it was almost afro-like; I looked like a human microphone.  I had bought a bottle of Cabotine on the ferry in the Duty Free and it was lovely in the sticky, claustrophobic heat.  It’s a crisp, green fragrance and I still really like it.  I can’t smell it now without being transported back to Brno, sticky and hot, frizzy hair almost knocking people over as I pass them.  It’s cheap-as-chips now but I still consider it a really good perfume and I always got comments when I wore it (complimentary ones!).  The other perfumes of my teens and twenties were:

  • venezia1992Venezia by Laura Biagiotti: originally released 1992.  (Top notes – ylang-ylang, black currant and plum; middle notes – osmanthus, jasmine and rose; base notes – vanille, sandalwood and resin). An oriental floral which has now sadly been discontinued in its original form but was simply yummy.
  • gucci-envy-for-women-50ml-edp-sprayGucci Envy: released 1997.  (Top notes – hyacinthus, lily of the valley, rose, jasmine;middle notes – green notes, magnolia, iris; base notes –  woods and musk).  I LOVED this.  Again, it was recently discontinued.  Why?  Why do they stop the good ones?
  • cocochanelCoco Chanel: released 1984. (Top notes – coriander, pomegranate blossom, mandarin orange, peach, jasmine and bulgarian rose; middle notes – mimose, cloves, orange blossom, clover and rose; base notes – labdanum, amber, sandalwood, tonka bean, opoponax, civet and vanilla).  Gorgeous but potent; strong enough to suffocate a busload of people if you squirt just one too many times.  Lasted all day on me which is one of the reasons I loved it so much.

Some years ago I visited Les Senteurs in Mayfair on one of my many hospital check-up trips.  Mum and I popped in to for a diversion from yet more hospital issues.  It was a bit of a revelation for me.  Up until then I had stuck with high street perfumes.  The ones in Les Senteurs (‘niche’ as they’re known) were absolutely not available on the high street and some were eye-wateringly expensive to my mind.  But omigod, the difference in the scents themselves!  The higher price tags reflected the higher quality and purity of the ingredients. They also ‘unfolded’ far more noticeably as the hours wore on; I hadn’t really experienced that with high street perfumes.  Anyone who has an active interest in perfume will know this but for those who don’t, every perfume has its top, middle and base ‘notes’, or ‘layers’ of scents which develop in that order after application.  The ‘top’ notes are what we smell when we spray a tester onto a strip of card, once the initial alcohol whiff has receded.  These are usually very bright, sometimes quite ‘fizzy’ notes and don’t last that long – about fifteen minutes before they evaporate and reveal  the next level;  the middle or ‘heart’ notes are the true essence of the perfume, what it is based around – and usually what it is named for – and develop just before the top notes start to dissipate.   These are more stable and tend to be rounder than the volatile top notes.  The base notes develop last of all and tend to consist of musks, woods, resins and amber.  They can linger on the skin for hours after the top and middle notes have disappeared, sometimes for up to twenty-four hours afterwards.  Some perfumes unfold in this way beautifully; others can be more linear and the scent as a whole doesn’t really change.
For my birthday, my parents bought me my first bottle of ‘niche’ perfume.  They didn’t know what to get me, I didn’t know what I wanted, so Mum suggested that and I agreed with alacrity.

Rosa Flamenca by Parfums De Rosine

Rosa Flamenca by Parfums De Rosine

It was Rosa Flamenca by the perfume house Parfums de Rosine.  Oooh, it was nice!  It has orange blossom, bergamot, neroli, jasmine, fig leaf and sandalwood as well as the inevitable rose.  It lasted almost exactly a year but by the time the bottle was empty, I wanted to move on.  This wasn’t going to be a long-term relationship.  I found it a little heavy for every day and although that may be unrealistic, I want to have a perfume I can wear every day in every season; a ‘signature’ perfume I suppose.  I don’t want to have to buy different bottles to suit different weathers and I can’t afford that either!  I want a bottle that suits me.  In many ways, this did suit me; it had a bit of spice to it, a bit of kick, which is what I like a perfume to do.  If it’s all floral and soft and pretty I’m not interested.  Too safe.  I want a little bit of the unexpected, a bit of twist or a surprise.  My life has been full of unexpected surprises so I want my signature perfume to be the same!
For my next forage into the world of niche perfumes, I sampled a Serge Lutens offering (again from Les Senteurs); Fleurs D’oranger.   The notes in this were fairly similar to the notes of Rosa Flamenca (orange blossom, jasmine, rose) and, to be honest, I bought it as a result of a truly fantastic sales pitch by the shop assistant at Les Senteurs.  The man who sprayed it on me clearly loved this perfume and his enthusiasm was completely infectious.  I like the staff at that shop; they are very knowledgeable about every single scent on the shelves, they clearly have an equal passion for perfume bordering on bonkers and they are never pushy or intrusive.  I bought Fleurs D’oranger knowing that I could actually wear this every day and it is truly a beautiful perfume.

Fleurs D'Oranger by Serge Lutens

Fleurs D’Oranger by Serge Lutens

But it was just.  Too.  Safe.  It verged on boring to be honest (sorry, Serge).
Another year, another bottle used up, another birthday; this time I was determined to get on the right track and find something striking – maybe not necessarily ‘beautiful’ – and with the required kick.  This time I did venture out to other perfume stockists (Liberty, Harrods, Selfridges et al) and sprayed until my nose became confused.  I researched the newer perfume houses I hadn’t yet tried and found one which sounded very interesting; L’Etat Libre D’Orange.  That ‘orange’ theme seems to be running right through the middle of my ideal perfume hunt.  Maybe because it matches my hair…?  Listed as a ‘young and creative perfumery from the heart of Paris’ and offering up ‘an alternative fragrance experience’, I thought they might have what I was looking for.  The bottles were quirky, the names – well, some were just downright weird.  ‘Don’t Get Me Wrong, Baby’, ‘Fat Electrician’, ‘Delicious Closet Queen’ – I mean, seriously?  It seemed so gimmicky that I was nearly put off but Les Senteurs (of course) had the entire range so back I went.  And quelle surprise!  They are actually beautifully crafted perfumes and very, very clever.  ‘Fat Electrician’, by the way, smells creamy, spicy and has a bit of a tang, which somehow fits.  I was taken with ‘Jasmin Et Cigarette’.  Yep.  Jasmine and a fag.  Classy, eh?  It was just gor-juss.  Obviously, the notes aren’t only jasmine and a couple of Benson & Hedges because that wouldn’t smell all that great.  It starts off with a blast of strong tobacco, but smooth, and a smack of real, earthy jasmine.  SO lovely!  Then it softens a bit into a more floral smell but the tobacco still lingers in the background, accompanied by hay and apricot and then the base has tonka beans, cedar, amber and musc.  I adored it.

A lovely perfume...I have to say though, I really didn't like the bottle!

A lovely perfume…I have to say though, I really didn’t like the bottle!

The only problem, again, was the longevity.  I knew it didn’t stay on my skin long because I had a sample to try after leaving the shop.  But I loved it so much I bought it anyway.  Love at first sniff….you can’t beat it.
After that bottle ran out – rather quickly – I decided to save up myself for my next bottle instead of waiting for my birthday.  It has taken me eighteen months to save up enough.  I went back to Les Senteurs after a couple of sessions at Liberty perfume department and Bloom perfumery (newly opened in Spitalfields – lovely little shop!  Do pop in if you’re passing and if you’re not passing, change your route so you can go there).  I sniffed and fell in love with a perfume from a range which I’d completely dismissed over previous years because I just didn’t like the sound of them.  This approach, I have discovered, is stupid.  No matter how much we may like the sound of what a perfume may smell like, we will have no clear idea of how/if it will suit us until we’ve sprayed it on ourselves.  The trouble with this particular perfume was that – again – it didn’t stay long on my skin.  But it was another Jasmin Et Cigarette moment…when something smells that gorgeous, a girl has just gotta have it.  I did the right thing; I took a sample home, tried putting moisturiser on first, tried it on my clothes and hair as opposed to just my skin.  It didn’t really seem to matter; longevity is a couple of hours tops on me.  But I didn’t even want to toy with the thought of buying another, longer-lasting perfume.  I wanted this one.  So I bought it, early one morning, on a damp, dreary day in London.  The shop hadn’t been open five minutes when I strode in, declared to the slightly alarmed-looking assistant what I wanted, and made the purchase on the spot.  The assistant was, frankly, impressed by my decisiveness.  Usually, he said, it could take several visits before a customer decides what they want.  He was new and I hadn’t met him before but the fact that this was actually about my sixth visit in a couple of months and I had bought five different sets of samples from them online also in that time proved his theory to be absolutely true.  So now I own Ciel D’Airain by Huitieme Art.  Translates into ‘bronze sky’; the perfume is meant to reflect an orchard on the banks of Lake Como in a storm, with the fruits and woods responding to the rain.

Gorgeous, gorgeous, gorgeous!

Gorgeous, gorgeous, gorgeous!

I fell in love with it because it is actually spot-on in terms of what it is meant to smell like.  Living in the country, I love the rain and often stand in the (vast) garden during a deluge just to inhale the smell; the flowers, the grass, the woods of the trees and indeed the fruits – as there is an orchard in the garden too – seem to explode with aroma in the rain.  It’s a scent like no other and I have often wished somebody would bottle it.  And Huitieme Art have.  The notes are simple and interestingly, there are no top, middle and base notes in this perfume.  The Huitieme Art range works in a way that all the notes are released at the same time so you get a linear, but complete sense of the perfume.  It doesn’t ‘unfold’.  I love this because I don’t have to go through a ‘stage’ which I might not be too fond of, as I’ve often experienced with the usual perfume ‘pyramids’.  The notes are fresh fruit, pear tree leaf and bark accompanied by olive twigs and grey ambergris.  And it. Is. Gorgeous.  It truly is like standing in the middle of a light rain shower with the smells of nature also washing over you.  It’s not in-your-face fruity; I don’t smell like a pear drop.  It’s a subtle, warm, slightly salty scent and the ambergris gives it that ‘wet earth’ kick which may sound awful to some but it works perfectly.  It doesn’t stay long on me.  It will be gone in a few short months and then I’ll have to either look all over again or stick with it and just accept that a bottle of this is never going to be a long-laster with me.  But I care not.  I love the smell and the bottle, which is like a miniature work of art in its own right; it feels like a smooth, polished pebble in my hand but looks like a sculpture – unusual but beautiful, much like the perfume it’s carrying.  I’ve already started saving for my next bottle, which will take a few months anyway.  For now, if you see me inhaling my wrist deeply with a big smile on my face, you’ll know why.