There are some spoilers at the end of this piece. There’s a warning before them in the text.

Warning: I also allow the filmmakers some artistic licence, which may be unpopular, but sue me, I’m a filmmaker.

Five Feet Apart is a fantastic film.

Five Feet Apart is a terrible film.

You’ll love Five Feet Apart.

You’ll hate Five Feet Apart.

But what Five Feet Apart provides is the most accurate on-screen portrayal of cystic fibrosis (CF) that I’ve ever seen. Of course there are little things (and one major thing) that don’t quite ring true, but those are few and far between and some may even be explained away by US/UK experiences. What matters to me is the feel of live with CF and the picture it paints.

It’s important to note, however, that no one can represent the views of experiences of everyone with CF — I am always at pains to say I am not ‘people with CF’, I am a person with the condition. It’s also worth noting in this piece I also don’t represent the views of the Cystic Fibrosis Trust (my employer).

Let’s be clear, at its heart, this movie is a soppy teen romance where two teens fall in love amid seemingly insurmountable obstacles. No spoilers here (I’m confident it’s pretty clear in the trailer!), but if don’t like those kinds of films, you won’t like this one.

Nor will people affected by CF like this if you want it to be a film about CF; it’s not. It’s a film about two teens falling in love amid seemingly insurmountable obstacles. And the biggest obstacle is their different personalities… and the life-shortening condition they live with.

There is a lot this movie can teach you about living with CF, and we’ll come to that later, but what it won’t teach you is anything about and what we have to tackle first is —

Cross-infection

Cross-infection is a major and very real thing. Research has shown that potentially lethal bugs can pass between people with CF and travel remarkable distances. In the UK, the guidelines suggest that no two people should ever be in the same room together for fear of causing each other irreparable damage,

In the film, the characters (mostly) abide by the ‘six feet apart’ rule that’s common — although not ubiquitous — in American CF centres. This would never be allowed in the UK.

That inaccuracy, then, is the biggest hurdle for people to get over when watching the film. For people with CF, we have to let it go, which you really should have done if you’re going to the cinema in the first place! For people without a connection to or knowledge of CF, just be aware it’s much more complicated than the conceit of the film makes it.

Regardless, it’s still a good introduction to some of the more difficult elements of a life with CF and the tortuous nature of the condition that has to be faced, dealt with and accepted.

The way the characters walk the halls with masks on to protect themselves and others from bugs, but take them off to speak to each other is also a little jarring; that’s not the point of the masks, but you have to allow some artistic licence because when we watch a film we learn so much from someone’s face. Having a film where the actors are all hidden away behind masks doesn’t make for compelling drama.

And it’s this level of artistic licence that I think will guide most reactions from people with CF, because you either accept that you have to do some things for the sake of the drama and allow yourself to get swept up in it, or you don’t and and every element that’s not quite right will drive you potty. That’s something most people won’t be able to choose, it will just be an immediate reaction they can’t control.

While we’re on the subject of minor niggles, the way they show the coughing up of sputum is a bit too vomit-like to me.

The biggest challenge — especially for a British audience — is knowing how much inaccuracy is the filmmakers being wrong and how much is the American norm. Things that jump out to us may just be differences in our systems.

With all that out of the way, here’s what you’ll learn from watching Five Feet Apart.

The Cystic Fibrosis Team

Inthe film, Barb plays a critical role that’s a bit of an amalgamation of the multi-disciplinary teams we have here in the UK. She a ward nurse and a nurse specialist, and a little bit of a physio/junior doctor, too.

Regardless, the characters with CF have a special relationship with her that is wholly accurate. All of the specialist CF nurses I’ve had have been incredible people. Deeply caring and understanding, but ready with a swift kick to the rear when you need it.

I’ve known one of the nurse specialists at my hospital in Oxford, Lisa, for more than 18 years now. No visit is the same without seeing her, even if it’s just to say hello. She’s seen me through the best of times and the worst of times and she was the one I first discussed my declining health and road to transplant with — not an easy conversation for anyone.

On the hospital ward in the old Churchill Hospital in Oxford way back in early 2005, I’d just endured a horrible winter of infections, hospitalisations and intravenous antibiotics (where the drugs are pumped into your body through a line in your veins). I’d also been looking at my notes and lung function results and noticed that my peaks and troughs weren’t as far apart as they used to be. Even worse, the intensive treatment for the troughs wasn’t bringing my lung function back up to the level of the previous peaks. I was losing lung function that I wasn’t able to recover.

Lisa came in, as she did every morning I was incarcerated on the ward, for a bit of idle chit chat before her day started ‘properly’1 . I vividly remember saying, “We need to talk about transplant, don’t we?”

That was the start of a near 3-year journey to my new lungs, where she (and the rest of the team) stood solidly beside me, even as I was being introduced to a new team at a new hospital, always making sure I was keeping as well as I could while we waiting for that fateful call.

The second half of Barb in the film (Barb II we’ll call her) for me was and remains my physio, Ali. I’m not sure anyone can understand how important the relationship between a person with CF and their physio is. I know because I’ve had awful physios, good physios, great phyios, and I’ve had Ali. The worst physios come into your room, push you to do your physio and chastise you if you haven’t. The best physios make any session feel like a visit from a friend.

We didn’t have afflovests in my day, and indeed they’re still not usually provided by the NHS in the UK, which meant we had to make do with some form of breathing exercise coupled with ‘physical manipulation’ — either percussion or chest squeezing when you cough and those sorts of things.

This means that when hospitalised you might have two or three 30–60 minute sessions with a physio everyday. That’s a long time to spend with someone. When I was in hospital I would spend more time with Ali than I would with my family.

I was really, really lucky to make such a great friend in Ali because it made physio sessions at least bearable, and sometimes even fun.

The depiction of the relationships between the main characters and Barb felt spot-on to me. Part police officer, part friend, part medical professional, the central importance of that relationship was shown brilliantly and demonstrated a real understanding for what life in the confines of a hospital can be like.

Isolation

When I was a kid, back in the late 80s and early 90s there was no such notion as cross-infection. Everyone thought it best for people with cystic fibrosis to hang out with each other so that we could share our personal experiences and learn that others faced the daily regime of treatments we did, too.

Only in the mid-90’s did we start to discover it wasn’t a good idea. Then we saw it was a bad idea. Then we saw it was a very bad idea. Then we saw that it was potentially fatal. That’s why cross-infection rules are so strict.

That means for people like me we had to work hard to adapt. Rather than hanging out with our mates in hospital, sitting on beds together, sharing war stories and bitching about the junior doctors who didn’t know how to take blood properly, we were now confined to single rooms, closed off from the rest of the ward and unable to even see the other people with CF on the ward. In the beginning, the best we could muster up was sending messages with the ward nurses or physios.

The Internet has been something of a (limited) saviour for people with CF because it suddenly opened up more and more opportunities to connect with each other. We began chatting again, finding new friends online, most commonly in ‘chat rooms’2 and web forums, the quaint forms of interaction that seem almost archaic today.

Then social media came along, making it even easier, followed by FaceTime, Skype, WhatsApp etc etc, allowing us to be more connected than we have been in more than 20 years.

But don’t let that fool you.

Speaking from experience from both sides of the coin, nothing but nothing beats being able to sit on a bed, seeing your friend in perfect HD, 3D, human resolution, being able to properly look them in the eye, hug them, whisper about your favourite nurses with them and having friendships just like all the ’normals’ out there in the world.

It’s not just the isolation and separation from your friends with CF that the condition can rob you of, though. Separation from your other circles of friends and family is real, too.

Being in a hospital more than an hour-and-a-half away from my home town means that my friends couldn’t just pop in to see me if they got out of work early or had some time before starting. It made it a mission that’s hard to expect anyone to make. That said, plenty did, and they also did incredible things for me, like joining my then-girlfriend, now-wife one weekend to totally overhaul the second bedroom in our little flat into a study where I could work and earn money as a freelancer from. I didn’t know anything about it until I got home from hospital.

More than just hospital visits, my CF stopped me doing things I would have leapt at doing otherwise. Shortly before I was listed for transplant, a bunch of my best friends went off to Australia for six months, which I was excited to do with them. Thanks to an unplanned, three-month spell in Texas due to a lung that wouldn’t properly inflate (ask me about it another time), I was too unwell to join them. Every email we got from them (this was in the days before WhatsApp and universal WiFi, kids) made me more and more happy for them and sad for me. I ended up reading Bill Bryson’s Down Under to try to at least vicariously experience the same things they did.3

And then there are relationships. Not the generic kind, the intimate kind. Without spoilers, it’s fair to say this comes up a lot in the film and it shows just how hard some of the decision-making can be around what’s fair and what’s not. It’s something I struggled with for a long time.

My destructive cycle consisted of meeting someone, spending time with them, getting to know them better, being open about my condition, getting closer and closer to them and then totally self-destructing and ruining the relationship a couple of months after getting serious about things. I’m not even sure I knew I was doing it, but I systematically pushed people away until they stopped trying to come back.

The only reason I ended up getting married to my wife was because she was perceptive enough to see this and simply wouldn’t accept me pushing her away. She took it, she dealt with it and she kept telling me she wasn’t going anywhere. So eventually I stopped pushing and she helped me realise that it’s not my decision whether someone loves me or not, just as it’s not theirs that I love them. Love is love.

But that still didn’t stop me refusing to propose or get married until after I’d proved my transplant had been successful. I was listed for transplant at 23, got together with my wife at 24 and was eventually transplanted at 25. The last thing I wanted was to leave a 24-year-old widow behind, because it felt too unfair.

There are as many different views on this as there are people with CF— and I know and respect many people who have felt the polar opposite to me (including my wife!) — but the point is that what the film captures brilliantly is that relationships (of any kind) are difficult. The are harder than they otherwise could be. They are more complicated. Because CF is incapable of getting out of the way.

Death & Dying

While it may not be easy watching, for me it’s entirely true that when you get to Stella and Will’s stage of CF — what’s commonly called “end-stage” — death looms daily. Whether you choose to acknowledge it, talk about it, mope about it or make jokes about it, the Reaper always feels like he’s tap-tap-tapping away at the glass in your window.

The portrayal of how Stella and Will (and Poe) deal with this looming presence is a fantastic demonstration of how different people with CF are, how there’s no one rule for all of us and how we react to any given situation. Just look at all the people who really, truly hate this film, compared to my delight with it! In life, everyone deals with everything differently and there is no one way that’s better than another. There is only way works for you.

While I hope that helps people with CF, what I’d like to say to you, dear reader, is that there is truth in every one of the reactions you’ll see in this film.

What you don’t see is just how interminable waiting for a transplant is. How boring it is. How frustrating it is. How humbling it is. How much of a daily millstone it can become and so how easy it is to fixate on what may come next.

That’s what this film really teaches you: it’s not healthy to think about death so much, but I’ve been thinking about it since I became aware of my own mortality around 5 or 6 years old. When you know your life is likely to be shorter than everyone around you, it’s natural to focus on it and think dark thoughts, and that’s why we have to develop our own coping strategies to cling onto whatever helps us cope with that knowledge.

For those who want to avoid spoilers, this is the time to start scrolling rapidly, where I’ve made clear the spoilers have ended. Because this brings us finally to the most important part when it comes to the portrayal of CF in the film.

**SPOILER WARNING**

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Losing friends

Watching the final months, weeks and days of people you’ve known and loved caused by the same condition that you know will eventually — transplant or not — kill you, is the exquisite torture of a life with cystic fibrosis.

For everyone with CF who gets to know other people from the community and is ‘lucky’ enough to survive long enough you will eventually reach the point where your friends die.

Several years ago, I remember talking to my grandfather about life in his late-80s. He was healthy, still walking miles every day and completing the Telegraph crossword most days, and had plenty of time to enjoy his six grandchildren. He said to me the hardest part was that he now had no friends. He’d watched them all die, been to all of their funerals, and he didn’t know what to do with himself. He was too old, he felt, to make new friends.

That’s exactly where I am now. I feel at 36 the same way he felt at 86. At last count (and yes, I do keep count, because I once forgot one of my friends who had died until I was reminded of them and the pain of that moment still lives with me) I had lost 24 friends and been to around half that number of funerals.

And you better believe that that makes you angry. Angry with the world. Angry with whatever higher power you may believe in. Angry with yourself for being happy that it wasn’t you, and angry for the family that it was their child and not your parents’.

It’s terrifying because it’s another one gone and you know you’ll be there one day. It’s terrifying because you know that one day those pews at the front will be reserved for you wife, your husband, your mum, your dad, that the poems will be read by your friends and your cousins, that everything you see happening now is in your future.

So when you see Stella react as she does to Poe’s death, you better believe that that’s 100% authentic. That the rage, the need for destruction, the need to feel something real is all-consuming, even if only for minutes. It’s all true.

When Stella says, “He was my best friends and I never even hugged him,” you can trust that nearly ever single person with cystic fibrosis has had the same thought, at the same moment, in their own lives.

Because life just isn’t fair. But for people with CF — and all those affected by it — it’s just that little bit more unfair.

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***SPOILERS OVER***

Five Feet Apart might not be 100% accurate when it comes to life with cystic fibrosis, but it is 100% faithful to how it feels to have cystic fibrosis. And that, to me, is what I’d love everyone to experience.

[1] It took me a really long time to recognise that these visits were the ‘proper’ start of her day, and that spending time with everyone on the ward was a critical part of what she did, helping us all feel a little be less lonely.

[2] I was unable to type ‘chat rooms’ without quotation marks because it just feels so wonderfully dated!

[3] I met and became friends with Bill a couple of years later and was delighted to be able to tell him the difference his book had made to me at such a tough time.

1. It took me a really long time to recognise that these visits were the ‘proper’ start of her day, and that spending time with everyone on the ward was a critical part of what she did, helping us all feel a little be less lonely. [↩]
2. I was unable to type ‘chat rooms’ without quotation marks because it just feels so wonderfully dated! [↩]
3. I met and became friends with Bill a couple of years later and was delighted to be able to tell him the difference his book had made to me at such a tough time. [↩]

Last week I had a Nissen fundoplication. Exciting, huh?

It’s an operation that wraps the top bit of your stomach around the base of the oesophagus in order to prevent stomach acid (and anything else) from travelling the wrong way up and, potentially, creeping into the lungs where it can do a fair amount of damage.

That is to say it’s a fairly major operation to correct a potentially very serious problem.

I’m now the owner of five (count ’em) new holes in my stomach, taking my torso scar-count to 13 – awesome!

I also currently have scars healing both on the outside and also on the inside. Scars healing internally is the weirdest feeling every, because it hurts and is uncomfortable, but you can’t actually see any of what it is that’s hurting you. It is, quite, genuinely, one of the weirdest sensations that I’ve ever felt. I also have no idea how well (or badly) it’s healing and when the pain may subside.

So I’m now recovering at home and trying my best not to go out of my mind with boredom or let my brain get too over-excited with creativity while I’m largely unable to act on it.

Hopefully the process won’t take too long.

IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
‘ Or walk with Kings – nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And – which is more – you’ll be a Man, my son!

— Rudyard Kipling

Nothing sums up the way I’m feeling this morning better than this amazing poem. It’s probably my all-time favourite poem and I try every day to live my life by it.

Around 8am this morning, I anticipated being in the middle of deepest Wales, holed up in a little hotel not far from the foot of Snowdon, enjoying a celebratory breakfast with the 3 Peaks team and our nearest and dearest who were all coming out to join us.

Instead I woke at home, in my own bed, many hundreds of miles from where I wanted to be and feeling pretty rubbish about it, if I’m honest.

But, straight from my Life According To Kipling playbook, I’m off out for a celebratory breakfast with one of the team and their wife, both great friends who’ve been hugely supportive through the whole crazy rollercoaster of the last few weeks.

I am facing disaster and treating is just the same as I would have the triumph of completing the 3 Peaks. By celebrating I’m telling whatever higher power has deemed it necessary to prevent me completing it for the 2nd year in a row that I will not be bowed, I will not be cowed and I will never stop appreciating, loving and making the most of the gift I’ve been given. Wales or Wellingborough, it makes no difference to me.

If this post means anything to you, please share the sign-up link for the organ donor register for the trek – http://www.bit.ly/oli3peaks – by copying and pasting or sharing the link to this post. Help us make sure everyone who needs it gets the second chance I’ve had.

The plan was that by this time today1, I should have been arriving at a hotel in Scotland with the rest of the 3 Peaks team to prepare ourselves to tackle the immense 3 Peaks Challenge this weekend.

As we all know, other things happened to get in the way of that.

I’m absolutely gutted that I’m not going to be with Ben, Dave, Gary and my bro this weekend and that I’m not going to feel the immense sense of achievement (and exhaustion) on Sunday morning that I anticipated feeling. What makes it worse is the fact that this is now 2 years in a row when my health has got in the way of the very same challenge, with the very same team of people.

I’ve dealt for many years with the ups and downs of my health, but I’ve always managed to come out of things with a positive spin and so it is with this. Despite thinking that after transplant I wasn’t going to face these kinds of disappointment, I’m finally starting to hear the sense in my own words, spoken at almost every event I speak at: transplant is not a magic bullet, it’s simply exchanging one set of problems for another.

Don’t get me wrong, there is nothing – NOTHING – that I would change about my life right now. Transplant has saved and transformed my life and allowed me to be the person I always wanted (and believed) I could be. It’s allowed me to do all the things I’ve always wanted (and believed I could) do.

Events like the things that have been happening recently serve only to remind me that although I have downsides, so does everyone else. And thanks to my transplants, my troughs are a hell of a lot shallower than before – and than many other people deal with every day – and my peaks are a hell of a lot higher.

So it leaves me simply to suck it up and move right along – knowing in my heart of hearts that not going this weekend is the right decision and knowing that something else will soon come along to excite, entice and energise me as I move forward.

As a result of recent events, my life is going through a lot of changes, but they are all enormously exciting and I know that the best times of my life lay ahead. It’s time to knuckle down, get on with it and start taking my first steps forward to the brave new world to which I’m being introduced.

1. around 4.30pm as I write this [↩]

By now you’ll have read the other two posts and, possibly, seen my Tweets on the subject, too, but I’m home safe and sound after the craziness of the preceding weeks. Here’s what happened on the final day of investigations at the John Radcliffe in Oxford.

At 8.30am I was informed I’d be going to the angio theatre at around 11am to get everything sorted. 10 minutes later I was told it would be 9am instead. A rapid shower and gowning later, and I was riding my bed down the corridors to the radiology department, where I was met by an assortment of nurses, doctors and, I think, and anaesthetist (although she could have been just about anything).

The nurse checked out my groin and deemed that I’d not shaved well enough, so gave me a rapid going over with a dry razor, following which I was immediately sterilised with surgical alcohol. Yes, yes it did hurt. A lot.

Next came the ironically-painful local anaesthetic injections around the artery in my groin, followed by a frankly disconcertingly painful and uncomfortable pull, pushing, pressing and scratching as the doc inserted a fairly large tube into my artery and begin sliding the angio tube all the way in and up to the base of my neck.

Angiograms are very weird things, where you’re lying flat on your back with an X-Ray machine immediately above your face and one immediately to the side. As they inject the contract dye into you head to highlight the blood flow – and thus show any clots or aneurysms – you feel a hot rush that’s unlike anything you can describe beyond the feeling you get when you tense really hard to make yourself go red in the face.

What’s even weirder with a full angio, as opposed to the CT Angio I spoke about last time, is that they pinpoint very specific areas of your head, meaning you get the flushing sensation in extremely localised areas in your head. It’s incredibly bizarre and although not unpleasant, it’s not something I’d like to repeat to often. Or at all.

Back on the ward, I felt the familiar headache forming, but this time it was accompanied by a significant nausea as well and before long I was beside myself with pain and the urgent desire to throw up, coupled with being forced to lie flat on my back for 6 hours after the procedure to prevent the artery opening up again once it had clotted.

It turns out, although I was unaware of it at the time, mostly through sedative doses of Codeine and Tramadol for the pain, that I’d reacted to the dye they had used. Whereas the CTA had only cuased a headache, the far more significant doses of dye used in the full angio had resulted in a not-insignificant reaction on my part. The only good thing to come from it is that I don’t really remember a lot of it too clearly.

In the end, I improved quite rapidly once I was put on IV fluids and began to eat and drink again and I was discharged the following day with two conflicted reports on what had happened.

The registrar was of the belief that the whole thing had been caused by acute sinusitis and that the LP result had been a false-positive. This is a diagnosis I struggle with having seen my mum suffer through horrendous sinusitis in the past and not recognising a single symptom she described in myself. However, because it was the only thing that showed up on the CT1, I think the Reg decided to put it down to the visible.

The consultant, on the other hand, strongly believes that it had, indeed, been a sub-arachnoid haemorrhage, caused not by a ruptured aneurysm as is most common, but by a burst blood vessel that was so small it obliterated itself in the process, leaving no evidence whatsoever for the scans to pick up – something that happens in around 15% of SAH cases, she told me.  Her main evidence for this was based on the Xanthochromia found in the LP – a type of cell formed when red blood cells expire – which she doesn’t believe would have formed in the CSF through a badly-performed LP as it takes too long for the RBCs to break down to that stage.

So, essentially, I left the hospital with a clean bill of health, but feeling worse than when I did when I was transferred.  I’m now on an anti-convulsant drug to stop the blood vessels in my head spasming and causing more problems. I’m assured this is purely a precaution and the course only lasts 3 weeks, so I should be back to normal soon.

More on the changes that have been forced on my by this latest hospitalisation later in the week.

1. ie, that my sinuses were full of muck [↩]

Following my post from last Thursday about my admission to hospital, at the end of which, you will remember, I was waiting for a transfer to a neuro unit somewhere in the UK, the epic story of a simple headache continued for the next 6 days before finally reaching an inconclusive conclusion on my 29th birthday this last Wednesday.

I was (eventually) moved to the John Radcliffe Hospital in Oxford, where their neuro unit is considered to be one of the best in the country. On top of which, it was significantly easier for my family to come across and visit than a stay in central London would have been.

The Saturday after I arrived I was prepped and sent for a CT Angiogram, which is a regular CT scan1 plus a big bolus push of iodine-based contrast-dye to highlight all of the blood vessels. The idea was to look for aneurysms or weakenings in the walls of the blood vessels that usually show as small bubbles of blood. The concern with any aneurysm is that it could rupture and cause major bleeding on the brain, which in turn can cause strokes or even death.

The didn’t find anything.

It was at this point that the suspected diagnosis was made clearer to me through the far more knowledgeable nursing and medical staff at the JR; they suspected what’s called a sub-arachnoid haemorrhage. Here’s a couple of quick definitions to save me boring you to death if you couldn’t care less about the rest of the medical jargon and info.

I then spent the rest of the weekend locked up on the ward on 4-hourly obs and not allowed to stray for more than 30 minutes and then only if accompanied by a family member. Strict isn’t the word, but then I suppose the kind of issues they deal with are much more serious than most of the hospital wards I have frequented in the past, where a minor hiccup is unlikely to lead to instant chronic brain failure or death.

On Sunday afternoon, I was told by the weekend doctor that he suspected the LP from Harefield had been a false positive from the two failed attempts before the successful one2 and that further tests were unlikely to be ordered.

To my surprise, then, I was consented for a cerebral angiogram first thing on Monday morning, with no real explanation of the reasons beyond the fact that it’s the best test to check or aneurysms. Clearly, the weekend doc wasn’t the one in charge of my case and made a slightly sweeping statement in leading me to believe all was well and I’d be on my way home as soon as the docs on my case could process the discharge paperwork.

Waiting around, nil-by-mouth, all day for a procedure you don’t know a huge amount about is slightly frustrating, but not nearly so much as being told ten minutes after lunch has been round that they won’t be performing it that day.

I would go on to have the full angio the following morning, but that’s a whole story in itself.

The epic adventure continues tomorrow….

1. of the kind I’d had to Harefield the day I was first admitted [↩]
2. meaning the sample was contaminated by blood from outside the CSF [↩]

If you’re reading this, you probably already know that I’m currently residing in Harefield Hospital following a ruptured cerebral aneurism on Sunday. Here’s the lowdown:

Sunday night, around 8pm, just as I was returning from my dinner break to put the final touches to the project that was due in on Monday, I developed a sudden, severe headache at the top of my neck where the spine meets my skull. Within minutes, it had spread right around my head, which alternated between feeling like someone was drilling into it and my brain trying to explode out of it.

By 8.30 I couldn’t function and was laid on the bed in pain, feeling sick. By 9.30 I’d started vomiting and wouldn’t stop for the next 24 hours.

After failing to keep down one dose of immunosuppression and knowing the morning dose wouldn’t stay down, either, I headed in to Harefield where they rapidly took a CT of my head and found nothing.  To be on the safe side, they then opted for a lumbar puncture (or spinal tap) to see if I had signs of blood in my cerebro-spinal fluid1.

Although clear to the naked eye, tests that returned on Tuesday confirmed the presence of blood and, hence, a probably bleed on the brain.

Since Tuesday, I have been improving progressively and now feel right as rain and ready for action. The doctors, however, disagree.

It’s extremely unusual to have any kind of bleed like this at my age2 and the obvious concern is that a small aneurism (pocket of blood) had a small bleed that caused the initial headache, but could fully rupture at any time and cause more life-threatening consequences.

Personally, I’m not worried about that at all. Harefield have been trying for the last 3 days to get me transferred to a specialist neuro unit with little success, which indicates to me that none of the neurosurgeons who have looked at my file are overly concerned.

That said, it’s obviously far too big a gamble to ignore it all together, so my current state of limbo is being sat in Harefield whiling away the hours and days until a bed becomes available for me at either Charing Cross or, more likely, the John Radcliffe Hospital in Oxford3.

Without going into more medical and boring detail, that’s pretty much the skinny for now. No idea if/when I’ll have access to my laptop again when I’m moved, so there may not be updates as regularly as you may like, but the latest news will be posted on my Twitter feed as it comes in.

Finally, many thanks for all the love and support you’ve all shown over the last couple of days since we first made the news public, it means a lot to me and to K as well, who’s obviously had quite the time of it over the last week and is coping with her typical strength and humour.

1. NB – blood in the CSF is NOT a good thing [↩]
2. a tender 28 until next Wednesday [↩]
3. also my preferred choice [↩]

On Sunday night I went to bed with my phone on and next to my pillow. I was fully expecting a midnight text to tell me that our wonderful fighter Jess had finally lost her battle after dragging herself through one last Christmas.

In the middle of the night – just after midnight, in fact – the phone did indeed buzz. I fumbled around, picked it up and read the message.

“Jess is having her transplant NOW”

I came on here this morning to leave a message about everything that’s happened with Jess in the last few days, but in fact my friend Sarah has beaten me to it and written such a concise and accurate blog detailing the events, emotions and thanks that we have all felt over the last few days that instead of trying to rehash it badly, I’m just going to send you over there to read about it. It’s also worth taking a look at the previous post as well, detailing as it does a family’s first Christmas together thanks to the wonder of organ donation.

Spare a thought as you read this for the family who have suffered the worst of Christmases and keep Jess in your thoughts and prayers. Although she’s finally been given her gift, she’s got a long road ahead of her and there are no guarantees. But one thing we all know is that she wouldn’t be with us now were it not for her call finally coming after more than four years of waiting.

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.