I’m Back…So Sorry For The Loooooong Absence!

9 Apr
Yes I am still around…so sorry for the huge gap since my last post!

I hadn’t intended to vanish off the face of the Earth, but life happened. Job changes, a long-running illness and sadly the loss of a close family member in January kept me busy in ways I hadn’t anticipated. Grief is a strange and unwelcome presence, I’m discovering. It’s still early days so things still feel very bumpy but I’ve missed writing the blog and have only just responded to the many, many questions you’ve been asking so it’s definitely time to get back on it!

Yes that is my cocktail bar.  I rarely drink and I have a cocktail bar.  I just love playing hostess!

Still alive…and still kicking!

So in terms of health, my shunt is still behaving itself which is fantastic. The fact that in every other way my life has felt a bit all over the place but my shunt hasn’t really done anything other than keep me going is testament to what an amazing little piece of equipment it actually is. I came down with ‘flu (proper, knocks-you-sideways ‘flu) after forgetting to get my ‘flu vaccination last year. Rapped knuckles for that one…having ‘flu at any time is horrible but with hydrocephalus it is officially ten times worse (I can safely say that having had ‘flu both before and after hydrocephalus!). It ended up turning into a bad chest infection which ended up with x-rays at the hospital but now it’s gone and I’m feeling back to my ‘normal’ self. ‘Normal’ will always be written in inverted commas when applying the term to myself; I don’t think what I feel day to day with hydrocephalus is ‘normal’ in relation to the rest of the population but I’m used to it…so it is normal for me.
One of the very positive things that has happened is that I’ve started rehearsing with my band again.  I have sung in many bands over the years (being a singing teacher and all that) but my favourite band, the country and Americana-based one called Family Nash, split when we just became too busy with our schedules.

Terry Jo rehersal

Terry (guitarist) and Jo (or Banjo Jo as we call her!) at our first rehearsal for years.  We eat apples during our breaks.  We’re not very rock and roll.

 

 I was in and out of hospital an awful lot at the time so couldn’t really be relied upon too much when it came to gigging…which is a not very helpful when you’re the lead singer.  Anyway, Terry, Jo and I decided it had been long enough and gathered at mine the other week to see how many songs we could remember. Quite a lot of them as it turned out!  We chugged out some tunes by the Dixie Chicks, Dolly Parton etc. and had a good catch-up in the process. We aren’t planning to gig soon but just playing and singing the old tunes (and some new ones) is enough for us at the moment.  If I can work out a way to post up a video or tune on here, you can have a listen for yourself!
In terms of the work with the shunts…well that’s been keeping me busy too so I’ll cover everything regarding that in the next post!

Keep sending in your questions and I’ll keep doing my best to answer them.  I’m thinking of starting a forum on here (or elsewhere if it’s not possible to add one to this site) so you can all talk to each other as well as me.  What do you think?

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An intro to hydrocephalus. Complete with ideas for a Cream Cracker Challenge and a few pics.

1 Apr

People have been telling me I should write a book/start a blog/document my life in some way for many years now.  I haven’t done so for two reasons; a) I feel embarrassed about being in the spotlight in any situation – self-promotion does not come naturally – and b) the very thing that they have been wanting me to write about has been the very thing that has prevented me from doing so.
I didn’t actually think anyone would be that interested, to be honest. I also prefer to just get on with things when I can and not have to keep dredging up any difficult times.  The ‘thing’ that’s prevented me up till now from doing this and that everyone finds so interesting is hydrocephalus.  Pronounced ‘hydro-KEF-alus’.  Try saying that with a mouthful of cream crackers without spitting any crumbs out; it’s great fun.  The ‘KEF’ bit is in caps because people tend to emphasise that part of the word.

Cream crackers + certain words = juvenile fun

Cream crackers + certain words = juvenile fun

I think it can be pronounced ‘hydro-SEF-alus’ (I gather many people in the States pronounce it as such) but personally I prefer the ‘K’; it’s a bit harsher, which to my mind fits the condition.  There is nothing soft, gentle or fuzzy-edged about hydroKEFalus (I’ll start spelling it properly from now on.  I don’t think it’s a good idea to intentionally misspell words for a long time).  It’s a challenging condition to live with, yet many people don’t really know what it involves.  So I’ll describe it below.  I’ll keep it short and simple as other peoples’ medical stuff can get a bit boring, let’s face it.

THE BORING MEDICAL FACTS (SKIP IF YOUR EYES START CLOSING INVOLUNTARILY)
  • Hydrocephalus is the result of a brain not being able to drain away the essential fluid it produces; the fluid gets trapped inside the brain and pressure starts to build as more and more fluid is produced and trapped inside with nowhere to go.
  • This fluid is called CSF ; for a really fun cream-cracker-challenge, try its proper name; cerebrospinal fluid.  It’s full of nourishing good stuff, drains away brain waste (no, I didn’t know such a thing existed either)
    This is me lil' lifesaver.  The bottom end actually runs all the way down into the abdomen.  And no, that's not my head.

    This is me lil’ lifesaver. The bottom end actually runs all the way down into the abdomen. And no, that’s not my head.

    and cushions the brain from bangs and knocks.  The old adage ‘too much of a good thing’ applies; CSF is a good thing to have in your brain but too much of it can effectively kill you within hours.

  • Symptoms of rising pressure in the brain include worsening headache, nausea, vomiting, double vision and drowsiness…which eventually can lead to coma and death.  Nice.

And that’s about it.  So as I cannot drain this CSF myself, I have something called a shunt implanted in my brain to do it for me.  A shunt is a bit like a glorified drinking straw; it’s a long, bendy tube and sticks straight into the bit of the brain (the ventricles) where the excess fluid is building up.  There’s a valve that can be adjusted depending on how much fluid you want to let out (it lies under the skin on my head – sort of behind my ear) and then it tunnels down my body (I can track it down to just above my right boob and then it disappears) and ends up in my abdomen (peritoneal cavity to be precise), where all the CSF that wasn’t needed anyway is absorbed and drained away.

So that’s hydrocephalus.  I’ve had it for thirteen years now and in that time I’ve had nineteen surgeries for it.  The majority of the surgeries have been to fix/replace the shunt when it’s developed a fault.  Three have been to deal with two shunt infections. The first time, the infection went straight to my brain. The second, it travelled down the shunt into my abdomen.  A shunts fantastic ability to transport unwanted CSF down the body is a bit of a downfall when it gets infected; its design also ensures that it spreads infection like billy-o.

Me with a bolt in my head. It’s an ICP bolt (IntraCranial Pressure) and it measures just that.  It’s a winning look.  I think this could take off.

On average I’ve had a brain surgery every 7 months; when you consider that it takes 2 months-ish to recover from a brain surgery, it doesn’t leave much time to get on with stuff before you start developing symptoms that will require the next surgery.  You also never exactly look your best.  Bad Hair Days become an everyday occurrence.  As does spending more time in your pyjamas than out.  The last eighteen months, however, I’ve been surgery-free; an all-time record.  I am using this rare opportunity to complete my ‘F-List’ – this is explained a little more on the ‘Home‘ page and ‘The 39th Year (And My ‘F-List’)’ post.  To say I feel a bit rushed to get everything I want to get done, done, might be a bit of an understatement.  Every day, I have a sense of my body and mind crying out ‘quiiiiiiiiiick!  Get a move on, before it all starts up again!’.  Not that I think it is all going to start up again just yet.  It’s just that I have been used to grabbing opportunities to get things done in the past on the odd days I feel well, so to have day after day after day of feeling reasonably alright is something I’ve struggled to get used to.  Everyday routine, for me, is a complete novelty.  I work!  Every week!  I can socialise on my good days if I want to!  I haven’t had to cancel last minute on anyone for months!  MY HAIR HAS GROWN TO MY SHOULDERS!!!!!!!!!!  (Can you see which part of my new life is the most important to me?  I have my priorities well and truly sorted).
So….why do the blog?  Here are my Very Important Reasons:

VERY IMPORTANT REASONS FOR DOING THIS BLOG

  1. I have a list of things to do on my F-List which I think will benefit from me blogging about as I go about trying to achieve them.  If I think people are reading about my progress (or maybe, my lack of it), I’ll feel propelled to get the heck on with it.
  2. It may help people who also have hydrocephalus to read the truth about what it involves (waaaaaay too many ‘textbook’ description out there online!) and to also show them that it doesn’t have to completely dominate one’s life.
  3. I need to practice writing stuff if I’m going to get any darn thing published (which is one of my ‘F-List’ goals).
  4. I’m a sheep.  Everyone seems to be blogging so I tend to just want to follow.

So now I had better get on with it.  See, this is why I’m doing this.  What I really want to do now is to go and make some cupcakes which would be a bad idea as a) I wouldn’t get any more blogging done today and b) I’d eat them.  Getting good at making cupcakes is another of the items on my F-List.  Here are some I made for Mothers Day:

I was quite pleased with these as they were my first batch and edible.

I was quite pleased with these as they were my first batch and edible.

.SS
SSSOSSSSS Sod it, I need to make some.  Almond cakes with salted caramel frosting, here we come.

For more posts about what living with hydrocephalus is like, click here.

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‘We Need A Cure!’ – Why I Don’t Ever Say That On Here (And Also Why I Understand Why Others Do).

11 Oct

I love September as in my mind it’s the start of Autumn (my favourite season).  I run to my own timetable and declare the 1st of September to be the first day of Autumn (even though it isn’t) because I love it so much and I don’t really care that I am factually incorrect.  I get all happy and excited and start taking waaaaay too many photos of red and brown leaves, conkers on the ground and squirrels running around with horse chestnuts in their mouths.  I’m probably quite irritating with it.
What I didn’t realise this year is that September had been selected as ‘Hydrocephalus Awareness Month’ in America by the Hydrocephalus Association (HA), a worthy organisation which focuses on finding a cure for hydrocephalus as well as providing information and community resources for those affected by the condition in the States.  Whilst I am all for raising awareness for medical conditions (writing this blog does that a little I suppose), I do sometimes struggle with the many ‘we need a cure now!’ messages regarding hydrocephalus that find their way onto my social media pages (I get tagged a lot!).  I never post them.  The first thing I do is untag myself so they don’t show up on my account.   The reason for this is because whilst I do think that yes, a cure for hydrocephalus would be a wonderful thing which would alleviate a lot of suffering for people all over the world,  I have personally found that doing what I can to improve my life right now, with hydrocephalus, makes me feel far more hopeful than holding out for someone else to come up with an outright cure and solve all my health problems for me.  A total cure may well not happen in my lifetime; after all, hydrocephalus has been affecting people on planet Earth since human brains developed.  Hydrocephalus symptoms were regularly described by Hippocrates (born 460 BC; that dude is old) – and so far a cure has still not been found, despite the awesomely jaw-dropping developments in medicine which have kept us all alive thus far.
The actual causes of hydrocephalus can be in themselves a bit mystifying.  I suddenly got it out of the blue when I was 26 after a gym session…well, maybe I didn’t actually develop it right that second but that’s the very moment the headache which I still have now made itself known.  The docs never discovered a concrete reason for it.  And I have a very complex case which has proved notoriously difficult to effectively treat over the years as even the teeniest adjustment in pressure causes my brain to throw a complete, over-the-top, diva-esque hissy fit of a tantrum.  My neurosurgeon, who is the top in his field, told me he’s not even sure which category I should fall under!  So for a total cure to be found which will suit everyone…well good luck to those who are trying.  And I honestly mean that ever so sincerely.
Shunts, to me, are downright amazing.  Yes, they fail.  Yes, they get infected.  Yes, we have to undergo a brain surgery to put them in, take them out and fix them.  But if it weren’t for that unassuming device in my brain right now, I’d be dead.  Simple as that.  And I’m really glad I’m not dead because then I’d be missing out on Autumn.
To me, the most positive thing I can do whilst living with a condition which hurts every day and for which there is no cure is to live my life in the best way possible; to try and socialise, to try and work, to try and do all the little, strange things which make me happy and to deal with the bad days (usually by keeping myself to myself and just getting through them knowing that they, too, will pass).  The reason I’m writing about all this today is that some of the messages I’ve seen on social media highlighting the ‘need for a cure’ and the call for ‘no more brain surgeries’ (which has been highlighted by ‘#nomorebs’ on social media) have worried me a bit.  Whilst I understand the sentiment – and frustrations! –  behind these messages, I also feel they are not all that helpful to people like myself, who have and will face more brain surgeries in order to survive.   No alternatives to brain surgery in terms of treatment are offered in these social media posts demanding an end to brain surgery…what are the choices for us if not that?  There are actually ways of treating hydrocephalus symptoms without a shunt in some cases…medication to reduce the amount of CSF production if the individual’s brain is able to drain a small amount on its own…but in cases like mine, where I’m 100% shunt-dependant, there is no alternative.  So to present brain surgery as nothing but negative to me is not that helpful.  Those of us who’ve been through brain surgery or surgeries know…it’s not good.  It sucks.  We’d all love to never have another one, ever.  But if you’re reading this and you’ve had a brain surgery, you’ve survived it, got through it and are well enough to be sat here reading.  So hey, we’re alive from that brain surgery!  We rock!  Virtual high-fives all round!
I would say that although I get the hope behind the particular campaign I’ve mentioned, although I understand the desperation felt by families of children and individuals facing their umpteenth surgery, for me focusing on the here-and-now is the best way to cope.  One hour at a time, if you like. Maybe one day there will be a cure.  Maybe one day there will be ‘no more brain surgery!’.  But right now, even though all those healthcare professionals and researchers are working as I type to achieve just that, we don’t have a cure and we will have to face more brain surgery (most likely).  So I say focus on the positives.  Don’t dwell on what you’ve missed out on due to being ill.  Think about what you can enjoy, NOW, since you recovered from that surgery.  Don’t regret the negative impact that surgery and illness may have had on your education and career.  Think about firstly what a freaking achievement you’ve made getting through what most people would never want to face.  Think about what you CAN do in terms of work and study…and adapt accordingly.  You may have to do things a little differently to the way you’d imagined but I’ll bet there is a whole load you can do with time and consideration.  If you’re struggling with your symptoms, talk, talk, talk to your surgeon and team about options.  If you’re hitting brick walls with that, go to your GP for a referral.  If you gather the support of friends and family and keep focused on what YOU can do, even though I know it’s hard when you’re feeling generally crap, you can make changes for your own life, no matter how small and that can feel so empowering.  And then you can leave the hunt for a cure and no more brain surgery to the pros whilst you marvel at the positive changes you’ve made, for you, right now.
I do hope we will one day have a cure.  And I totally get and respect all those who are crying out for one.  But I also say it’s okay to look at your situation and think ‘okay, this isn’t how I planned things and it feels really bad right now.  What can I do?’.  And if the #nomorebs social media hashtag comes true, great…just don’t forget to thank #brainsurgery for all it’s done for you so far because without it you most likely wouldn’t be revelling in the beautiful colours of Autumn and the cutesy little squirrels and the smells of bonfire smoke and…what do you mean, ‘that’s just you’?!

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

7 Sep

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

‘Health And Humour’ live discussion reminder.

13 Aug

Hi everyone, I hope you’re all having a great weekend. I’ve had a few emails from readers asking for a reminder about the live audience Q&A I’ll be taking part in today. It’s at 3.30pm GMT (in fact in exactly 3 hours time) and you can see it live from the Lewes Depot Facebook page (just give ’em a like). Here’s the link;

https://www.facebook.com/events/140502793204217/?ti=as

If you can’t see it live, it’ll be available to watch at any time afterwards. 

See you soon! Jordan x

Going Live! Fancy Joining Me?

3 Aug

Hello good people.  Just a quick notice: I have been asked to speak at an audience Q&A following a screening of new film ‘The Big Sick’ on the topic of the role of humour in healing later this month.  I’ll be discussing the issue with Dr Khalid Ali and the event will be broadcast live from Lewes Depot Cinema (where I currently work) on Sunday the 13th August at 3.30pm London Time (BST).  You can find details of it here and if you fancy tuning in live on the day all you have to do is like or follow Lewes Depot on Facebook and you can watch it for yourself.  I’d like to say I’m not nervous about this but I am a bit.  However I think it could be an interesting discussion as personally, I couldn’t cope with all those brain surgeries without a hefty dose of humour thrown in.  However, I know this doesn’t always suit everyone.  I’d be interested to hear your thoughts; send them in!  Hope you can tune in and join me.

Jordan x

 

 

Our Charity Starts At Home…But It Doesn’t End There

9 May

After a few years of snatching spare bits of time to get what started as the ‘shunt donation project’ off the ground, I feel that it’s finally getting to where I wanted it to be.

 The idea started back in 2011 when I was badly overdraining and waiting for a bed at the National Hospital; I felt so terrible that I was online searching for…what?  Something.  Some hint that I wasn’t the only one going through this, I suppose.  I used to do that rather a lot when I felt physically awful and emotionally drained from feeling permanently ill and preparing to go through yet ANOTHER brain surgery.  It never really helped; all I’d uncover were horror stories of brain-surgeries-gone-wrong.  (If you find yourself in the same position at any time, may I suggest going to Shine if you’re in the UK or the Hydrocephalus Association if you’re outside of the UK?). Both offer excellent advice, reassurance and have community links where you can chat to other people in the same boat as you….AVOID THE HORROR STORIES AT ALL COSTS.

  Anyway,  (a quick recap for new readers), I stumbled across a film from Vietnam highlighting the plight of children and babies with untreated hydrocephalus and mentioning that shunts were sometimes donated from hospitals to help with the treatment.  To cut a very long story short, I started to gather what information I could on the situation and started asking hospitals if they had any spare shunts. This took a good year as I wasn’t actually well enough to do much at all (I was having brain surgery on average once every 6 months at this time…this went on from 2000 to 2013).  When I finally had some breathing space in 2014 I teamed up with a consultant neurosurgeon at the National Hospital in London (Lewis Thorne) and we co-founded Action For Hydrocephalus, which was finally registered as a charity at the end of 2016.

afhethiopianpatient2

Goal achieved; one of the children after a successful shunt surgery using our donated items (Ethiopia, April 2017).

We are now three, as we were joined by another neurosurgeon from Great Ormond Street Children’s Hospital (Greg James).  So far we have sent donated shunts and neurosurgical equipment to Uganda, Kenya, Vietnam and Ethiopia.

In 2016 we teamed up with Reach Another Foundation, who work in Ethiopia.  We’d donated shunts to them before but Dick Koning (Founder) thought there were more possibilities by working together.  We’ve met a few times and are now partners.  Dick and his team regularly operate on babies and children with hydrocephalus and spina bifida as well as training neurosurgeons.  We are in discussions with regard to a possible training exchange with the UK (so we’d fly surgeons out there to train Ethiopian students as well as having them over to the UK to observe shunt surgeries here).  We also help equip their expeditions to Ethiopia as there are no neurosurgical instruments available out there; without equipment and shunts no surgeries are actually going to be possible.
Running a charity from your living room (the meetings are held in London but all the other work is done at my house) can be a messy business.  More often than not my little home has shunt kits, boxes of neurosurgical items and a lot of paperwork lying around .

shuntkitsinlivingroom

Shunt kits can be rather big.  Cats can be rather nosy.

Keeping my inquisitive cat out of the boxes and packaging is one task.  Not tripping over them is another.
One downside of my hydrocephalus is that I’m so pressure-sensitive I can’t fly on planes any more.  So I can’t actually get over to Ethiopia myself (yes I know I could go overland but it would also render me bankrupt).  So getting photos and feedback from the team who’ve received and used the donations is nothing short of wonderful; to see the children after their surgeries, knowing that a shunt is now safely inside each of their heads and that now the hideous feelings of high pressure will start to be reduced, literally lifts a weight off my shoulders.  I know first-hand how high pressure in the brain feels.  To have it without the knowledge that it will soon be treated is unthinkable to me.  Being ill in hospital isn’t nice but it could be so much worse; I always count myself very lucky to have been born in the UK with access to hospitals, surgeons and healthcare – none of which I have to pay for directly.  Very. Lucky.  The most recent expedition to Ethiopia was just last month in April.  Dick had emailed me a few weeks prior with a list of equipment which was urgently needed and asked if I could help.  This is when holding down two jobs and trying to get charity work done becomes a little tight.  Luckily this time, as before, I had two very understanding donors who acted immediately.

photo-collage

One donation, two donation, three donation, four!

  The companies who donate the actual items we send out are absolutely crucial.  Without them, the money would have to be raised to buy the equipment which would slow things down to the point of being dangerous for the children who need urgent surgeries and would also at times make some surgeries impossible if the money can’t be raised.

afhethiopianpatient1

One of the tiny patients: April 2017 expedition

I have been very lucky with the donors I have worked with; all of them who have given their equipment in abundance and completely free of charge (including shipping; I always say I’ll pay for that and they never let me) do so with goodwill and a real desire to help.  In the past we have had donations from:

Sophysa
Codman
Medtronic
Single Use Surgical
And various hospitals!

This time around we were lucky enough to add a new and very generous donor to our growing list.  We were already being helped on this occasion by Single Use Surgical (who had helped equip the trip made in 2016), but also had Surgical Holdings on board for this trip.   Surgical Holdings are a family-run company located in Essex and quickly sent a whole load of equipment from our list.

afhdonationreceived1

Dr Esayas receiving some of the donations from Surgical Holdings & Single Use Surgical in Gondar (April 2017)

Approaching a new donor is always a little nerve-wracking for me.  After all, I’m literally asking a company if I can have some of their products for free…I know it’s for a charity but I still get a little knot in my stomach when I ask.  And I really shouldn’t because I have never received a negative or rude response.  If the company are unable to help they’re always profusely apologetic and if they can help, they are so enthusiastic and supportive it makes me feel ashamed of being worried about it.  Because generally, people do want to help, especially when they know more about what we’re doing.

 This time I was in touch with Daniel Coole, Managing Director, who replied quickly to my email with ‘absolutely; if we have these items we’ll help.  How many?’.  It was as simple as that.  What a kind man. Soon after, a large box arrived at my house with everything the team in Ethiopia needed.  Unfortunately, actually getting the goods to Ethiopia can be a little tricky; we’re not dealing with Royal Mail and British customs here!

afhdonationreceived2

Inspecting the items with smiles.

Paperwork requirements keep changing, items get confiscated at customs for various reasons and never returned…it’s a bit of a gamble.  And also sometimes takes a bit of to-ing and fro-ing with the donors to ensure we have the right paperwork etc (which keeps changing).  It’s not the fault of the donors and can be a bit time-consuming for them which frustrates me no end; I want it to be as seamless as possible for them.  However now Dick has established a new system with customs and Ethiopian Airlines so we’re hopeful that from now on the whole donation procedure will be nearly effortless for the donors.
So generally, I track down, beg for and receive the items at my home, take them personally to a volunteer flying out to join the Reach Another Team in Ethiopia and she carries them with her hand luggage.  Given the vast amount I received this time around from two donors (Surgical Holdings as already mentioned and also Single Use Surgical who have donated before), I felt a bit guilty about handing them over to her; talk about heavy!!

afhethiopianpatient3

Another of the babies ready for surgery.

 I wouldn’t fancy lugging that load to Ethiopia on top of all my normal luggage.  I do seem to spend rather a lot of time feeling a bit guilty doing this work; guilty for asking for free stuff, guilty for passing it on…I really must get over that! Ciara (the lovely volunteer) didn’t bat an eyelid.  She was too busy being excited about the donations.   And so she should have been…it was generosity on a huge scale.
Yesterday I received the first photos from the team in Ethiopia which I have shared with you here.  They show one of the surgeons unpacking the items and also some of the little patients who they were used on.  As we had so much equipment, the donations were sent to three different centres which was amazing; without them, these surgeries couldn’t have been performed and the babies couldn’t have been saved.  So thank you Daniel Coole and everyone at Surgical Holdings, Single Use Surgical and all the other donors who have helped us in the past (and who can hopefully help us in the future).  Because without you, there would be a whole lot more suffering going on.

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