Neurosurgery Archives – Jordantheheadcase

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.

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Have You Tried Switching 2020 Off And Back On Again?

March 21, 2020

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.

14 Comments

I’ll Get Back To You All Very Soon…

May 29, 2018

Hi Everyone,
Sorry for the long absence. I’ve got strings of messages from you all to get through and I promise I’ll try and answer them all. I’ve got a weeks holiday coming up and I’m putting aside a couple of days to do that so if you’re wondering if I’m ever going to reply to you, the answer is yes! Just been a very busy period of work and life adjustment…which I’ll fill you in about soon too.

Jordan x

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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).

October 11, 2017

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’?!

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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

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

May 9, 2017

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.

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 .

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.

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.

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.

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!

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!!

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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What’s it really like to have ICP monitoring? (And…AND!! There’s a video!!)

May 30, 2014

ICP probes and all that jazz

ICP monitoring is a term you may have heard of if you have hydrocephalus. You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like. I am a firm believer in the ‘knowledge is power’ school of thought. I have had about ten or eleven episodes of ICP monitoring so am pretty old-hat at them by now but even so, my latest experience involved some new experiences so I thought it wouldn’t hurt to write a ‘what you can expect’ guide for first-timers. Doctors and surgeons do have a tendency to be a little blase about such procedures. They’ll tell you about what they’ll physically do and it all sounds very straight-forward. But of course they’ve never actually had a bolt screwed into their skulls with a probe sticking into their brains before so in terms of what it actually feels like (which is the bit we patients are concerned with), the experts are the patients, not the healthcare professionals. Looking back, I wish I’d had more first-hand information from a patient who had had it before, especially the removal part as this is done with you wide awake. I have a lot of patients-to-be on this blog asking me if I’ve had it and what it feels like which is why I decided to make a little video and actually film my bolt being removed – the link is further down. ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.

Me ‘n’ My Bolt

When this pressure is within normal limits, you generally feel fine. If it’s too high or too low, you generally feel pretty crap. The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15. Of course this will depend on the individual; I cannot handle pressures over +10 and below -12. If I had a pressure reading of +15, I’d probably have double vision yet I’ve been on the ward many times with fellow ‘bolted’ patients opposite me recording pressures of +25 and not really batting an eyelid! Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage. ICP monitoring is a really good diagnostic tool; it reads the pressure every minute of every day and records what’s happening when you’re awake, asleep, eating, standing, sneezing or just reading a book. At my hospital, the National in Queen Square, they hook you up to a laptop as well which draws out an impressive little graph which shows any spikes or dips in pressure at a glance. You may have ICP monitoring if you’re feeling generally off and adjustments to your shunt settings haven’t helped, or if your surgeons are suspecting a shunt malfunction of some sort. I was going to include some photos of the bolt and probe itself but having looked at the pictures I think I’ll leave it as they don’t look like the friendliest of items, to be honest!! Basically the unit consists of a long-ish probe and a bolt which is screwed into the skull; the probe slides through this bolt and is screwed into place with the nut. Literally a nut and bolt in your head. The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic. It takes only a few minutes apparently. I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference. I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all. I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah. The hospital you’re at will probably offer you the choice so it’s up to you!

So, my friend the ICP bolt. Once it’s in, you’re quite literally plugged into the monitor itself, which looks like this:

An ICP monitor….during one of the rare times my pressures were reading as normal.

they usually set the monitor at your bedside and once you’re hooked up, they can read the pressures all day and all night as well when you’re asleep. You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it. Once the bolt is in, it does hurt a bit; it’s quite sting-y where it’s been screwed into place and if you raise your eyebrows up it stings even more. The solution is to not raise your eyebrows up or frown. Basically, get botox. You can’t feel the probe inside your head but you will feel it move if you forget you’re plugged in and get up to go for a walk without unplugging yourself first. Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
It takes a day or so to get used to having wire hanging out of your head. At nighttime in particular, it’s best to clip the wire out of the way onto your pillow, otherwise as you toss and turn during sleep, you may find yourself inadvertently tugging on it and will get woken up repeatedly with a sore head. I find it best to use those tiny little hair clips

Clipped and ready for snoozeville!

(get them from Claire’s Accessories or similar) and clip the wire to the top of my pillow, making sure I’ve left enough room for me to roll in the opposite direction without pulling. Once that’s done, you can get a good nights sleep in. Just don’t forget to unclip yourself in the morning!
Depending on how long your surgeon is planning to leave the bolt in will probably depend on whether you attempt to wash your hair or not; if it’s only a few days, you can easily leave it. But for ‘monitor marathons’ like the four weeks I had it in for, you’ll probably want to at least try to wash your hair at some point! This is possible but you just have to be very, very careful; getting the bolt wet is not an option. It takes a bit of practice, but it’s do-able; I have found over the years that the easiest method is to gather the wire in your mouth to keep it well out of the way, make sure you can see yourself in a bathroom mirror (so you can see as well as feel where you’re directing the shower spray) and if you can’t see your reflection, get a friend/family member/nurse to carefully place some towelling around (not on!) the bolt to keep it dry. Then, when you wash your hair, you simply wash up to the towel. As long as you keep the bolt and surrounding area dry, it’s okay.

Keep the wire out of the way and avoid the bolt…then just wash ‘n’ go!

Some hospitals are stricter than others about this but to be honest I’ve never known any hospital keep ICP bolts in heads for as long as they do at the National, so the staff there are pretty understanding about it! Besides, I think it actually helps to keep the surrounding hair clean and not let it get very dirty over weeks, to help reduce infection. I have no idea if that’s actually true but it makes sense to me!

Adieu, Lil’ Bolt, Adieu

Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will be awake for. It only takes about five minutes to do so you can understand why they don’t bother going through the whole ceremony of an anaesthetic and besides, apart from the stitching-up bit, (which does hurt), it’s really not too much of a bother. I won’t lie; it feels weird. After spending all your time when it was in trying not to knock it or bang it or get the wire caught, it does feel very wrong to have someone suddenly grappling and tugging at it. I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – but in case you don’t want to watch it, I’ll describe what happens as best I can. First they get you to lie flat. This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat. A nurse or medic will start off by unwinding the plaster or dressing which surrounds the bolt itself, usually soaked in iodine to keep everything clean. Then they’ll unscrew the nut on the bolt to loosen the probe itself. This can feel a bit strange, but noting too odd yet. When they actually pull the probe out, sometimes they’ll ask you to breathe out sharply after three, and remove it on ‘three’…this time they didn’t ask me to do that and all I felt was a slight sting and a strange but very fleeting feeling in my head…then it was out, in a second. After that (and you’ll see this in the video) it can feel like it’s all over – I keep asking ‘is that it?’, rather hopefully! But no, they then have to get the screw out of your skull. This is the bit that does feel odd; the screw is obviously screwed in tightly on insertion so it can be a bit of a job for them to undo it. My advice is just breathe slowly! When they take it out it stings again but nothing terrible. After that they’ll clean the area with iodine; it’ll feel sore but it’s quite a relief to know it’s all out and done with! The final thing for them to do is stitch you up; you may not actually need this but I lost some CSF when they took the bolt out so I needed quite a deep and tight stitch. Now, the truth is this bit does hurt. A lot, if I’m completely honest. I’ve not met anyone who’s had this bit done and who hasn’t thought it to be pretty darn painful. You can actually get a local anaesthetic put in first before they stitch you up if you want, but having had that once, I’d say it’s not really worth it because it takes about three injections to properly numb the area and that really stings in itself! Best to just grit your teeth, get something to grab hold of and get on with it! In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit! It really, really hurt because they had to pull it so tight to stop the CSF leak…it definitely hurt more than any other one I’ve ever had if that’s any consolation! I think it’s because it had been in so long; the longer it’s in, the sorer it gets. But after I’d had a good slug of Oramorph, it died down after about an hour. And that’s it!

Yay! It’s gone!

Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore! Freedom! You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home. Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards. Mine did this this time around but it’s never done it before and I know from the experiences of others that it is very rare. I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards. But all that happened was that I was kept in, monitored closely (a CT scan was done but came up fine), given as many painkillers and anti-sickness as I needed and was only allowed home when I felt well again. It was a real surprise that this happened because I did feel very awful indeed, but it was a first. It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive. But I have always said I’ll be truthful in this blog so I wasn’t going to lie about what happened this time around. Generally though, ICP monitoring is a little tedious (being tethered to machines is unusual) but is really, really helpful to your surgeon to determine exactly what your head and your shunt are doing so it really is worth having it done if it’s needed. The discomfort passes and you will hopefully feel loads better afterwards. Plus it makes for some very interesting photos to send to your friends/family/boss to impress them!

At the end of the day, although it’s not something I’d opt for voluntarily (given a choice between a days shopping and ICP monitoring, I know what I’d plump for), ICP monitors can really help get to the bottom of not-too-obvious shunt issues and this helps you get better more quickly. And best of all, they’re pretty darn safe. And when it comes to our brains and our health, that’s what we want!

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Okay…total U-turn….

May 19, 2014

Erm….so you know how I said in my last post that Vietnam work was going to have to be shelved for a bit due to the key contacts I was working with disappearing? Yes, well, forget all that. I had a final push at trying to get the Vietnam door open and….ta-daaaaah! Doors flinging open all over the place. But most importantly, these doors were being opened by the right people. So in the past couple of weeks I’ve possibly made more progress than I had done in the last six months.
Looking back, it almost makes me laugh. Because really, the key to achieving your goals is so simple. You need passion about what you are doing. You need to be doing it for the right reasons. You need to be able to dream big. And the people you decide to work with on the way need to be just as passionate, just as motivated for the right reasons and must be dreaming just as big. As the new neurosurgeon I was put in touch with (Martin Corbally) who opened a whacking majorly big door said to me regarding my project, ‘Jordan, doors are just waiting to open’. And now they have, it feels great. I won’t go into all of it because there’s shedloads of work ahead but I will say that it feels very positive, very exciting and very possible. But I will mention Hillary Browne of Helping Orphans Worldwide…the biggest heart I’ve encountered in a long time and a big door-opener as well. She does amazing work with her foundation (check out the link before) and is soon to be moving to Vietnam permanently so it’ll be fantastic to have so involved a contact actually out there, seeing as I can’t get on a plane due to my flipping noggin’. So all good and now all moving forwards once again! Stay tooned for news on this one.
I also had a very productive and lovely meeting with a major hospital in a major city, who are being majorly helpful. I very frustratingly can’t name them because they, like many who want to help in the donation of expired-but-absolutely-perfect medical equipment, are bound by internal rules which prohibit them donating; as a result, it’s all sent to landfill or for scrap metal. MADDENING! So they’re doing it very secretly. I panic slightly about this on a weekly basis but their determination to join this cause overrides their fear of a possible firing and they’ve said they are more than happy to risk it. Such determination of spirit is what fuels my belief that this will work. Indeed, they’ve donated lots already to me (I sent out a goodie-bag of neurosurgical bits to Ethiopia last month from them) and now they’ve come up with major full kits for neurosurgery and shunt insertion which are literally like gold-dust. They’ll be ready for me in July. Very ‘cited about that!
So many people have been offering donations for this recently…it’s so kind. They range from money to fax machines to offers of help carrying all the heavier stuff to London so I can pass them onto the volunteers taking the equipment out to whatever country it is (that offer is probably the one that got the most effusive thanks!). I’m in the process of setting up a charitable foundation with a website in production so that if folk do want to get involved in any way, it’ll make it a lot easier for them to do so. So far I’ve not accepted money from anyone as I didn’t want anybody but myself to be out of pocket in any way. But now the project is getting bigger and spreading its wings, I can see that if I carry on this way, I’ll end up bankrupt! Posting heavy equipment across the world is not cheap, nor are the UK rail fares to go and pick it up (I’m not able to drive for two years following excessive burr-holes-in-da-head). The hardest thing is choosing a name for the charity. What the bejeezus am I going to call it? It could be something safe and descriptive but I personally want it to be catchy, something which will get attention. Not just another ‘Society For…’ or ‘Association For…’ because the charity world is saturated with those (no offence to Societies and Associations; it’s just that I don’t want us to get lost). So late-night brainstorming sessions looking for a name are the current order of my day.

My, what a helpful post that was! I have great news on the development of the project but I can’t tell you what it is, I’ve received some amazing donations but I can’t tell you who they’re from and I’m soon to be a charitable organisation but I can’t tell you what it will be called. Aren’t you glad you read this?

Before I go, here’s a picture of true happiness….apparently all that’s needed to achieve this state is a warm lap, some sunshine and someone tickling the top of your head. Who knew?

This is da life.

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New Season, New Directions…

April 7, 2014

Hello everyone! I’m so sorry for the mahoosive delay between my last post and now. I’ve been busy with work, sorting out shunts to send overseas and had not one but two laptop disasters;

Caught in the act.

first one caused by my cat secretly sleeping on the keyboard when I was out of the room and clogging up the fan with fur and the second caused by a mug of tea with a broken handle. You can guess the rest. But never mind, for ’tis Spring! Hurrah! I love Spring. Spring means flowers and bunny rabbits and seven very sweet little lambs appearing in the field next to your house, bouncing (and bleating) incessantly in the cutest manner imaginable. Any jokes about mint sauce at this point shall NOT be appreciated.

Thankyou for all your lovely comments during my absence.

One of my new little neighbours. Awwwww!

It’s great to know what people think about this blog; it’s not so great to hear of the difficult episodes some of you are dealing with regarding your own experiences with hydrocephalus but I do think it’s a comfort at such times to know you’re not alone. My own head is still being treated as an outpatient (outhead?) at the National Hospital with pressure adjustments being done every couple of months. We’re still not there yet following my glitch last year. My lovely registrar, Akbah, did say that it would take around six months to a year to get me well again and it looks as though (again) he is going to be correct. I’ve gone down three settings since I left hospital and I’m experimenting with things which might affect the pressure, such as my bed (usually raised on bricks at the head-end as I can’t bear to lie flat so am trying one brick, then two bricks, then no bricks), excercise, work hours and so on. I feel much, much better than when I left hospital so I know we’re going the right way. Is the fact I STILL feel ill frustrating? Yes. Does feeling down about that help matters? No. Onwards and upwards, then!

Changes And Developments With The Shunts!

I haven’t updated on the Shunt Donation Project as for a few months it’s been nothing but researching World Health Organisation guidelines, NHS guidelines, donation procedures, yadda, yadda, yadda….not exactly scintillating stuff. I needed to get some guidelines in place for both donors and recipients of shunts, to ensure that everyone would be singing from the same hymn sheet and that we would be doing things correctly. Anyhow, I had three lovely donations recently; the first from Lewis who sent me an email saying; ‘I have nine in-date shunts sitting here in my office for you’. Whoop-de-do! I collected them and allocated them to a new organisation I’ve recently started to liaise with, called the Reach Another Foundation. This is a non-profit organisation who work on various projects in developing countries to improve healthcare, education and living conditions.

Marinus Koning, Medical Director of Reach Another Foundation

Marinus Koning, the founder of the company and the Medical Director, was horrified when he first went to Ethiopia to discover that there were only two neurosurgeons for the eighty million people who live there. Through a neurosurgery training programme, that number is slowly rising; I believe there are five or six now….but still! As is often the case in developing countries, babies born with hydrocephalus are not deemed to be emergency cases and are pushed right to the back of any neurosurgical list. So of course, by the time they are finally dealt with, many have died and for the vast majority, treatment is not possible. Marinus had indicated on his website that a severe shortage of shunts was also a primary factor, which is why I offered him the nine which Lewis had got for us. He jumped at the chance and so I was able to put the first proper procedures in place, using our guidelines, signed statements and reports to ensure that no fraud can take place and that the shunts cannot be sold on for profit (given that they are worth hundreds of pounds, sometimes thousands). I had no concerns of Marinus selling them on the black market but it’s good to ward against such possibilities. So on Saturday just gone, I travelled to London with my Mum (girly day out) to meet up with Ciara Baxter, a volunteer for Reach Another Foundation who is flying out to Ethiopia in two weeks. It was really good to meet her; after all the endless faceless emails between myself, donors and recipients, it is a refreshing change to meet someone in the flesh! She was lovely and we had a good chat about the situation in Ethiopia and how we might be able to continue to help the situation. So I passed the shunts over and now they are on their way to Ethiopia and some waiting children. Marinus is very interested in joining forces with us to see what we can do together to improve things there so I am meeting with Lewis next week and then ‘Skyping’ with Marinus after that to get to hopefully get some plans in place. I shall keep you posted!

The second lovely donation I received was from Sophysa, the largest European shunt manufacturer.

Fantabulous shunts from Sophysa

I have been in touch with them for some time and have my very own ‘Ambassador’ there called Mohamed! He is a lovely man, very willing to help in whatever way he can. He was meant to send some shunts last year but then I not-very-helpfully fell ill so he sent them to me last month; a big shiny box of new, in-date shunts! These I have allocated to BethanyKids in Kenya as they were due to get some Codman donations last year but that unfortunately fell through. It’s very interesting doing these donations in terms of encountering enough hurdles to warrant an Olympic event. Although we are doing nothing illegal, red tape and high levels of potential fraud mean that we have to be a) very imaginative and b) rather cloak-and-dagger about the whole thing. Disguising valuable shunts as other invaluable items is now something that comes naturally to me. No wonder these poor people are having a hard time getting the treatment they need; not only are the governments not investing in their care, even donations from charities are often not even reaching them.

The final donation I had was from Adam Zeller, yet another lovely man who put me in touch with Mohamed. Adam works for a company called Fannin and they sent us some fantastic valves. No catheters but getting hold of catheters is not actually that difficult, so we should be able to send them out as full shunt kits. I don’t yet know where these will go. I have stated in the guidelines for donors which Lewis and I send out that all costs for postage are covered by myself. All three of these donors have refused to let me pay and Sophysa asked that the cost be instead donated to BethanyKids rather than go back to them.
All these donations from people who, frankly, have very full inboxes and busy lives, make me realise that it is actually rather simple to do this; you just have to be passionate enough about it. The donations which have fallen through have always had an air of ‘yes, sounds like a great idea but really busy at the moment’ with promises of donations and then nothing coming of them. The donations which have come through have just flowed, no problems, no barriers and no ‘gentle reminders’ needed from me! All the donors and the recipients have a real drive to get this done but with no fanfare or drama. They just get on with it and to heck with the extra workload. That’s why it works.
Now if only we could have the same success with the governments!! The Vietnam proposal looks as though it’s going to have to be abandoned for now; it has nothing to do with a change of heart or lack of determination. Lack of key contacts is the main cause, plus the fact that getting any information out of Vietnam is like getting blood out of a stone; it’s been exhausting and very frustrating and I’ve been working hard to try and make this happen but with limited contacts and no means of getting out there myself (I can’t fly due to pressure issues in my head), it seems more worthwhile to try this proposal with another country first, where I have more people helping me and therefore far more contacts! Whilst I’ve got Marinus so enthusiastic to make permanent change, I think the most appropriate thing to do is run with Ethiopia and see if a proposal to the Ethiopian Health Ministry could be a good idea. If that works, I can try again with Vietnam and maybe already having a successful pitch under my belt will help persuade Vietnam that if Ethiopia can do it, so can they. Ethiopia is a poor country so doesn’t necessarily have the money to fling at treating children with a fatal condition, whereas the Vietnam economy is very strong; it’s more a case of a lazy government by the look of things there! Anyway. Chats with Lewis and Marinus this week, hurrah! Action. Planning ahead. Working with people who want to help you bring about proper, long-term change. It feels great.
Oh by the way, I am looking into setting up a charity to raise money for this project; at the moment it’s not costing me too much money but I’m hoping that a proper established charity will help propel thing forwards. Name suggestions are very welcome!

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There’s No Place Like Home; Dorothy Was Right About That.

October 22, 2013

Hospital Then Home Sweet Home….

Yay! I’m home! Three-and-a-half weeks in hospital, one ICP bolt, six pressure changes and one nasty post-operative episode later, I am home. I love my home so much that it’s very hard to leave it, but even better to return to.

My little house…soooo pleased to be back!

As you will know if you read this blog, I’ve been struggling with bad symptoms for a few months now and the recent stay in the National Hospital was to determine just what was going on (if anything) with my shunt. I’ll keep it short due to having been in there for weeks; we’ll be here till Christmas if I tell you everything in detail. I had an ICP monitor placed in my brain on my second day there and that stayed in for three weeks. An ICP monitor is a probe which sits in the brain and which, when hooked up to a monitor, reads the intracranial pressures every second. It charts them out as a graph as well so that neurosurgeons can look for any abnormal patterns or pressures. There is more on ICP monitoring in a post I’ve nearly finished, with a video of mine being removed for anyone who is facing their first and might be a bit worried about what it all entails. I’ll link to it here once it’s finished in the next couple of days. Once the bolt is in your head, it looks pretty odd but it’s okay. Here’s a picture of me totally rockin’ the look.

It’s a winning look, let’s face it.

This time around the pressures were very low to begin with, so Mr Watkins tried increasing the setting on my shunt in stages initially to try and get the pressures to read a bit more ‘normal’. However..nothing happened. I was on setting six to begin with and by the time we’d reached setting thirteen, still nothing was happening with the figures on the monitor screen. The only thing happening was my brain going into a tailspin of pressure every time the shunt was adjusted. We discovered that increasing the pressure in twos or threes wasn’t doing me any good; my brain clearly doesn’t like being tampered with on any level so we resorted to increasing the pressure just one at a time and giving me a couple of days to recover afterwards before we moved it again, hence the long hospital stay! When we reached setting fourteen, everything suddenly started to shift and within hours I had high pressure symptoms, which was odd to say the least. Mr Watkins thought that maybe my brain didn’t need the shunt now as much as I had done before, but that didn’t explain why nothing happened on settings six to thirteen; if my brain was draining partially on its own now, that would surely have been reflected on all the shunt settings, not just number fourteen. I am now on setting twelve and that is where I have been for two weeks. The team agreed that I needed to go home and rest my brain, especially after the ICP probe was removed; my head didn’t like that one little bit and I became very ill (which is very rare as I’ve had about eight or nine bolts removed with no problem whatsoever). Setting twelve is now proving to be too high so tomorrow I am going back to the National to see Simon and have the pressure reduced to setting eleven, to see if that starts to help. I really want to get back to normal so I’m praying that it does. So for the last week I have been resting and chilling out in my lovely little home, pleased to arrive back just as the turn of the season is about to commence.

Yes. Sheep and the Tardis in the field next to my home. I don’t get it either.

Autumn is one of my favourite seasons, along with Spring. The trees are just starting to turn from green to golden browns, reds and oranges and the air is full of the scent of Autumnal bonfires. The squirrels are back, sourcing their Winter food supplies for their kitchen cupboards and the whole countryside is full of earthy, woody, rainy, smokey scents. Blissful!

Lovely Autumn evening light

I adore the Winter months; don’t get me wrong, warm sunshine on your skin can feel great but I’m always relieved to leave Summer behind as I can’t tolerate heat too well; my loves are the rainy, foggy, crisp, cold, snowy Winters and the Autumns which proceed it. Of course, living in the countryside helps fuel my passions! I get all the glorious scenery and wildlife here too. My cat, Hoshi, is pleased to have me home and that’s a slight understatement. I had an excellent cat-sitter staying here for two weeks and the remainder of the time my Mum and a friend stepped in. A plus point of living in such a gorgeous property in the countryside with a hot tub in the garden is that people are more than happy to come and stay in it whilst feeding the cat.

Hoshi. She likes to warm her bum on my laptop for some reason.

I haven’t been able to get Hoshi off me, to the point where I look as though I have grown a furry appendage as she’s constantly lying across my shoulders as I go about my business, looking like some strange furry fashion accessory. Which purrs.
Two good things happened during my hospital stay which were totally unrelated with my head. Firstly, Lewis Thorne (the neurosurgeon who is assisting me with my shunt donation project) came to see me on the ward (‘social visit!’ as he put it) and after general how-are-you-and-what’s-happening chat, he told me that he’d sourced some expired shunts in the National that he was putting aside for us to send out. Hurrah! From what he said it sounded like there were quite a few of them. He’s on leave for a bit till early November so once he’s back I can hopefully go and have a look at them and get them out to countries in need. Hurrah for him. I also had an email from a donor I’m not allowed to mention because they would rather be kept secret, but it’s from a lovely hospital who also emailed me to say that they have a lot of surgical equipment for use in neurosurgery to give me. Some UK guidelines have recently been amended so they cannot be used here anymore but they are certain they would be absolutely fine to use in areas lacking in equipment. I am meeting with the donor tomorrow morning to have a look and pick them all up, then when Lewis is back I’m going to ask him for a little lesson in ‘identifying totally alien neurosurgical utensils’, as I didn’t recognise anything that was mentioned and don’t have a clue what it all does! So…shunts AND surgical equipment! T’was like Christmas.
The other good thing that happened involved another neurosurgeon. George Samandouras also works at the National and (I am certain) oversaw a fairly major surgery of mine in 2011 when Mr Watkins was out of the country. He writes a blog about his work which I stumbled across at the beginning of this year and it was through reading his blog that I became inspired to start this one, to log my shunt donation project and to keep myself motivated. Mr Samandouras includes amazingly inspiring quotes (his own!) in his blog and I was so impressed by some of them that I wrote a few of them out on Post-It notes and stuck them on my fridge. One is ‘it’s fascinating how human beings allow our performance to be affected by what other people might think of us! I find this extraordinary’ (this one helped when I worried about being laughed at by senior neurosurgeons who might think I was crazy in trying to stop the disposal of perfectly-useable shunts). The other one (which I still have up) is; ‘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.’ Brilliant. Every time I felt myself slacking on my project, I’d read his words and get back to it. Anyway, having read his blog avidly all year (re-reading it often too), he walked onto my ward the first week I was there. He was treating a lady opposite me and he came to talk to her. He was there some time and I went to the bathroom and was thinking about everything I’d gained from reading that blog of his, how he had literally inspired me into action and as a result (hopefully) my dreams of getting unused shunts over to children in need might be realised. As I came out of the bathroom he was leaving the ward, walking towards me. I wanted to thank him for writing it, for inspiring me so much…but I became completely and utterly tongue-tied! Some people get star-struck meeting Madonna or other such celebrities; I become star-struck at the prospect of meeting Mr Samandouras! I quickly told myself to stop being such a loon and stopped him, introduced myself and thanked him for his blog and his inspiration.

I stand outside the hospital some evenings when it’s calm and quiet; it feels very safe to be here.

He was, as I predicted, totally charming and engaging and seemed genuinely interested in my situation; not that neurosurgeons are not genuine, only I didn’t feel he was just being polite. I want to link his blog to this one if he would allow it so I’m going to ask his permission first. But in case he’d rather not, I urge you strongly to look him up on Google and read the blog word-for-word. It doesn’t matter if you’re not interested in brains! He talks about all manner of things which inspire him, from music to travel to writing with a fountain pen. I promise you it’ll be time well spent. The man doesn’t have twenty thousand followers for nothing! (Update as of 24th October; Mr Samandouras emailed me this morning to say he’d be happy to link his blog to mine and also congratulated me on my ‘very well-written blog’. I went as red as my hair so it’s a good thing nobody could see it. Here is a link to his blog: please read and enjoy).
So tomorrow it’s back to the National…today I am feeling pretty rough so I am hoping that the adjustment will take me in the right direction. There may be no place like home but there is also no place like the National for when you’re feeling brain-weary.

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