Archives: Difficulties

I really should learn to keep my mouth shut. Less than 24 hours after confidently blogging that I was on the mend I find myself on the ward at Harefield stuck in my own private episode of House.

I woke on Friday with a much chestier cough and weakness in my legs and – after chatting to my GP and after he chatted to the registrar at Harefield they decided that the best bet was for me to go to Harefield and get properly examined and worked up by the pros.

The biggest down point appeared to be that it was looking less and less like something that is fixable by the time we’re due to leave for Hawaii. We’re fully insured for it, but to be honest the money was the last of our worries.

Arriving at Harefield I was popped in a room and prodded and poked about a bit before sitting down with AP the reg to go over the options.

K and I, being big fans of Hugh Laurie in House, almost burst put laughing when AP actually said, “differential diagnosis”.

There seem to be 3 viable options did everything this week and the condition I’m in now: 1) Swine ‘flu, plain and simple, for which they can send me home with Tamiflu and let us go to Hawaii. 2) A recurrance of the CMV I was admitted with last year, for which they can send me home with a course of Valganciclovir and let us go to Hawaii. 3) A chest infection, either as a result of, independent of or additional too some kind of ‘flu or virus, which would be game over for Hawaii

So I’ve now been bled dry and X-rayed, but the blood results won’t be back until later this morning/afternoon and I’m down for a CT scan at some point today after the X-ray was inconclusive.

It’s a pretty horrible feeling sitting around waiting for test results that will dictate whether I can go on my guest holiday in 6 years or if, like May 2008, my body has conspired to stop me having ant foreign fun at all.

Keep your fingers crossed – I’ll update the blog & Twitter once I know the score. Suddenly “Smile Through It” seems ever so appropriate again.

All this rushing around doesn’t seem to suit me. No sooner had I blogged about all the necessaries for holiday and uni prep than I started feeling a little pesky with a bit of a sore throat. Monday night I woke at 4am with a roaring fever and raging headache splitting my very delicate and uni-bound cranium in two.

After fighting for more sleep, I eventually hauled my butt out of bed at 8am to spend an hour tossing my cookies in the bathroom. When I managed to stop hurling for five minutes I dragged myself to the phone to call the ‘rents and tell them I suspected ‘flu.

Funnily enough, at the time I was more concerned with not passing it on to K as having it 8 days before we’re dye at the airport for Hawaii is bad enough but if it were to gestate a little longer and hit her 5 days before we flew, our holiday could be in very real danger.

Mum and Dad thus rode to my rescue and I’ve been holed up in quarantine at Chez Parental for the last 3 days, with regular GP visits and Harefield consultations. Tuesday was the most concerning day as I kept being sick, a very bad thing when my new lungs are dependent on oral immunosuppressants to keep working properly.

One very sore injection in my left butt cheek later (still hurts, by the way) and the vomiting, though not the nausea, stopped and from there on in I’ve been improving all week.

Now all but mended, I’ll be heading home tomorrow to finish off my uni and holiday packing which I’ve so far abandoned K to. My lung function is looking good, so despite the slight cough I’ve got I’m confident there’s nothing serious going on.

It’s been a pretty rubbish week, bur with so much coming up in the next few weeks I’m kind of glad it happened now and hasn’t – touch wood – spoiled either the holiday or my first weeks at uni.

Lots to do and little time, but still enough to reflect on the marvel that it post-transplant recovery. Had I fallen I’ll a week before flying abroad pre-transplant there’s no way I’d have been fit to leave the country. Thank heavens for the gift of life – a phrase that gains more meaning and resonance each and every day.

It’s been a pretty rough time of late and, if I’m honest, I’ve been struggling quite a lot. I’ve not really felt like blogging for quite a while as I’ve been battling with my own daemons and not really wanting to share them with anyone else.

Over the last couple of weeks it’s been slowly emerging why I’m feeling like I am and I’ve come to a few realisations that will hopefully put me on the right path for the next little while. Essentially, I realised, I don’t know how to be well.

I’ve spent so many years ducking and diving in and out of hospital, but since May 2008 I’ve not been admitted, not really been unwell, not had a cough, a cold or so much as a bad case of the hiccups. It’s been all plain sailing and that’s not something I’ve really experienced before – my life has always been broken up into chunks of illness and relative wellness.

What this means is that real life is starting to intrude with a vengeance. I’m actually having to start thinking about “the future”, something that’s always been an alien concept to me as I’ve never really believed I’ve had one. I’ve never planned more than a few months in advance because everything’s always been so unpredictable that I couldn’t. Even last year I had to miss the holiday we’d planned because I was hospitalised with CMV. So it’s strange to be forced to sit down and work out just what the future holds for me, for K and for everyone around us.

I’ve been struggling a lot with making the most of my new life, too – I want to do everything I can to honour my donor but right now I don’t feel that I am. I want to challenge myself both physically and mentally and push myself to find where my new boundaries are, so I’m looking at ways of doing that to make a dedicated, concerted effort to make the most of these lungs and to help my donor to smile down on me and feel proud of the life they’ve given me.

It’s been a tough haul over the last month or so and I’ve had to make some really tough decisions and I know I’ve got some really tough ones to come, but I’m starting – slowly – to feel more confident and energised about what’s on it’s way. I will try from now on to keep this blog more up-to-date with what’s happening and, in particular, my thoughts and feelings about things as I know from before my transplant it can actually be pretty therapeutic.

I can’t promise it’s all going to be sunshine and lollypops on here, or that it’ll even end up being that interesting, but I can promise myself that continuing to write “smile through it” may help to remind me of the long-lost days when everything was a chore and I had more to worry about than not having plans for next February.

Here’s to life: living it, loving it and smiling through it.

I guess there’s ambition and there’s stupidity and I’m guilty of the latter.

I was so passionate about getting this flick made that I hadn’t stopped to look at the practicalities properly, thought it all through or taken the time to develop a team who could help out with the production side.

Naiveté can be a wonderful thing in some walks of life, but not in filmmaking. I underestimated the task in hand and the likely support for it and I overestimated my own ability to deliver.

Do I feel foolish? Yes. Will I plough on and keep chasing my dreams? Of course.

This blog – back to it’s original incarnation – may well cease to exist now, or become much less frequented. When I started writing here, the idea was to talk about my journey to transplant. I’ve been there now, I’ve passed that life-saving, world-changing milestone and I don’t now want this blog to turn into yet another “today I had a ham sandwich” diatribe about the world’s dullest daily life.

So feel free to check back every now and again and see what’s happening – or even better add me to an aggregator like Google Reader and then you’ll see whenever I throw something up.

Take care of yourselves and never give up on what you know is right for you.

There was I hotly anticipating my return to work this week and getting really rolling on Remembrance when I was flattened again. This time not by small children, but by some kind of a stomach bug. It’s left me totally wiped out and exhausted for the last 3 days and I’m only just getting back up to speed. Sucks quite a bit.

I have to confess I’ve been a little worried about things. If you’ll remember, last year’s CMV infection started out with weird pains in my chest and stomach, so a recurrence of similar and apparently inexplicable symptoms has rattled my nerve a little bit. I’m sure it’ll be fine, but I think after so long of being well my mind is maybe a little pre-programmed into expecting something bad to be due me. A stupid thought process, to be sure, but one that’s hard to avoid after spending 25 of my 27 years as a seriously ill person.

Anyway, the upshot of all this is that I’ve achieved nothing at all this week, which is obviously sub-optimal. Added to which, since I’ve been doing nothing but lay in bed all day, I’ve got into a horrible sleeping pattern and am up until past 3 in the mornings at the moment – never a great thing for aiding recovery.

I’m due in to my GP surgery tomorrow morning for some blood tests and I have a scheduled appointment at Harefield on Monday so hopefully this will all either have cleared up by then or we’ll be able to tell exactly what it is.

In the meantime, the one thing I have managed to do is to draw up a shortlist of DP candidates, who I’ll be meeting next week to have a chat with and go from there. It’s exciting stuff, I just wish I had more energy for it right now.

Since my transplant life has taken on a whole new slant. For the most part this is absolutely, 100% undeniably awesome – being able to do the things I want to do, not having to worry about all the rubbish that went with the battle against CF. But every now and again something hits you with a bump, or a thud, or a massive hammer-blow to the head.

I got a phone call from a friend’s husband this morning saying he’d just been off the phone with the mother of a friend of mine from years back. She had CF and we used to chat a lot about all sorts of things – frequently how rubbish CF was – and make each other laugh and work through things when we needed some support. Sadly, she passed away this morning.

There’s such a complex mix of emotions post-transplant. On the one hand, I’m so deeply saddened that another young life has been lost to a disease which needn’t take people away from us. On the other hand, I’m so deeply grateful to my donor and their family for giving me the chance to retake control of my life and battle on to achieve what I want to achieve. It’s both deeply upsetting and hugely motivating when you hear of someone losing their fight.

Just last week I was in Oxford for my annual review with the CF team. It’s really a bit of a formality, as the CF no longer affects my lungs, but it’s still important for them to keep an eye on the other parts of my body CF can affect. It was such a great day though, epitomised by one little moment.

As the physio was doing my general assessment, including posture and other things, she had to listen to my chest. I’ve known my physio for a long time – over 10 years I’ve been going to the same clinic with the same physio now – and as time passes and you go through phases of ill-health, better health, dreadful health and have the kind of scares I went through, physios are the people you naturally seem to turn to. Most PWCF will tell you that their physio is the person they confide in the most, more often than not because they are the member of your medical team you spend the most time with due to the frequent rounds of physiotherapy needed to keep the chest at some vague approximation of a functioning level.

So my physio is doing her assessment and I lift my shirt for her to listen to my chest. I used to know I was ill when the physio or doc would listen to my chest and pause the stethoscope in any one place for longer than a single breath. As she listened to my chest, she paused in one particular area and a dread went up me, until I glanced down and saw a smile creeping over her face as she listened to my now-soundless chest.

For years all anyone had been able to hear on my chest was the crackly static of blocked and infected lungs, now there’s nothing. And as she listened, my physio couldn’t hide her big, beaming smile at the fact that there’s nothing for her to do on my chest any more.

I’m enjoying a life I never thought I would or could, thanks to the generosity of one family, but the price I have to pay for the extension I’ve been given is seeing people who could so easily be like me losing their fight.

This is why I work with these guys and this is why I’m making Remembrance – if they’re not here to reach their dreams, I damn sure better make an effort to fulfill mine. If you want to buy in to my dream, go here to find out more.

This is my second post-transplant birthday and I’m delighted to say that the novelty really hasn’t worn off. This time last year I was celebrating a birthday I never expected to see just weeks after mourning the loss of a friend whose transplant didn’t come in time.

This year is no less emotional, having been part of the Team Ethan fundraiser last weekend and remembering that I’m only here thanks to the generosity of my donor and their family. But it’s also been brilliant to be surrounded by my friends and family and really enjoy a day of doing nothing but what I wanted to.

I’ve been so overwhelmed by all the messages of support on Facebook and texts and phone calls from people. I really didn’t expect so many people to get in touch – it’s all a bit of a shock, if I’m honest, although K thinks I’m silly for being surprised. I suppose I simply had no idea that so many people were watching out for me and keeping tabs to make sure I’m doing OK.

It’s also really given me the kick up the proverbial to get myself into gear. Last week was a really hard week and I lost my focus a little, hence the delay in announcement of the Big Secret Project. But having had a weekend to look at the bigger picture, I’ve realised that this is 100% what I need to do with myself right now. And if I can’t do it with the MASSIVE team of supporters I’ve clearly got behind me right now then, quite frankly, I’m never going to be able to do it.

So from tomorrow it’s onwards and upwards – the project is a GO and will be announced right here and on the TinyButMighty website within the next 48 hours. So come back soon!

This is the first week in a while that I’ve not had things scheduled in my diary for every day of the week. It was a nice change to look in the diary and see some blank spaces.

Somehow, though, it doesn’t feel like I’ve got much of a break – I’ve been so busy that I’ve left a lot of things neglected and so I’ve been on an enforced desk-bound catch-up mission all week.

That said, I did manage to get to the cinema last night to catch Gran Torino, Clint Eastwood’s new film, which I completely loved. I don’t know quite what it is about Eastwood that hits me, but all of his recent stuff since Million Dollar Baby has really grabbed me and totally absorbed me. He’s a truly masterful filmmaker and Gran Torino is his best for a while. Changeling was good, but felt a little bloated and over-long to my tastes. GT on the other hand is perfectly weighted, plays out along an arc that’s at once predictable and surprising – not an easy thing to manage in today’s world of more and more savvy film-goers.

Speaking of filmmaking, things may be starting to look interesting from a freelance standpoint. I’ve got a meeting today to discuss a project in Northampton which stems from a networking session last week, plus I’m in talks to shoot a “making-of” doc for a low-budget British movie that’s gearing up for pre-production at the moment, which is very exciting.

I’ve also just started work on a new screenplay which is, I think, my most commercial spec script that I’ve written so far. I’ve set myself a deadline of 1 April to have a finished first draft, after which I’m going to do a polish on an old script and the new one and start to shop them around companies and agents to see if there’s any interest.

And in between all of that, I’ve got my last 2 talks of my marathon session of 4 in 3 weeks coming up this Saturday and next. I promise I’ll try to blog about them to let you know how they go, since the previous talks I seem to have managed to gloss over entirely on here. If I get half a minute I’ll try to pop back on and at least update the entries for last week’s talks so you know to whom and about what I was speaking.

Although I’ve been doing lots of, frankly, really cool stuff, I’ve actually not enjoyed being as busy as I have been. It’s been non-stop for almost a month and I haven’t had chance to do the things I want to do – I’ve always felt like I’m constantly moving from one thing to the next without pausing for breath, which is something I don’t really want to turn into a habit as this new life should be all about enjoying it all.

So here’s hoping I can be more disciplined about saying “yes” and “no” to things and focus more on what I see as the things I most want to pursue. Sooner or later I’m going to have to make a decision on what I most want to do with myself, and the sooner I do that, the better for everyone, I think.

Not like that.

After a fun night of snowballing on Monday, Tuesday started slowing me down a little with a scary kind of feeling that I had something brewing. As it turns out, I did, but it was only a cold.

It feels quite good to sit here at a keyboard and type “only” a cold – as one of my friends put it in a text on Thursday, a simple cold used to be a serious issue to me. It would have me worried, K worried, my parents worried. And we’d ride it out and get in touch with my team at Oxford and sort out some antibiotics to treat the inevitable chest-infection that would have followed.

Now, having a cold means I feel a bit rubbish for a couple of days. I love colds like that.

Still, it does have its drawbacks. Since developing my cold on Tuesday night, I appear to have returned to a previous life as a hardcore insomniac. Since Tuesday night into Wednesday, I’ve been sleeping appallingly. Indeed, I sit in the lounge writing this now at nearly 4am and I’m still not feeling anywhere near tired enough for sleep. But during the day I’m becoming Zombie-fied.

This week has been a fortuitous week to be stuck with insomnia, however, since the snow has meant any work I did have lined up has been cancelled and, as of Thursday, we’ve been properly snowed in. I say “properly” but that’s not 100% accurate. What I mean is that we can’t drive anywhere, which, in Milton Keynes, the city modelled on American-style grid-road systems, is a bit of an obstacle.

Yesterday I did manage a wander down to the shops at the bottom of the road, which is somewhere in the region of a mile’s walk, and discovered that traipsing through snow is incredibly hard work. Coupled with the cold, it left me exhausted. I was certain that it was going to help me sleep better in the evening, but no dice. Another hour of lying in bed tossing and turning lead to me getting up and staying up until I finally all-but-passed-out in the late-early morning hours.

So now I’m sat back in the lounge watching 4am tick ever closer, ploughing through more of the extras on the new Lord of the Rings Extended Edition Box Set I picked up from the now-defunct Zavvi in CMK and charging myself up with the drive and passion to go out and make at least one of the short film scripts I have lying on my desk just waiting to be tackled.

I just need to find a cast…

I apologise for the lack of updates after my not-too-rubbish start to the year with regular updates etc. I have, however, been somewhat preoccupied over the last couple of weeks with various mentally-busy work-related things, including producing a DVD of a project I worked on last year and completing a First aid course for work at the Grove.

Most excitingly of all, though, is the fact that I’ve been settling in to my new role as Chairman of Live Life Then Give Life, something of which I’m very proud. Our former Chairman, Emma, has felt it necessary to stand down, although she will, thankfully, be staying on as a much-valued trustee. At a meeting two weeks ago, the rest of the board of trustees saw fit to elect me into post as Chairman and I’ve been pretty much rushed off my feet ever since.

I clearly chose precisely the wrong two weeks to step up into the new role, having spent my first week in post working 10-4 on First Aid every day and my second week locked in my home editing suite to cut, design and finalise the DVD for the schools project I worked on with Suze last term. There’s a showing of the vid at the school on Tuesday morning, so it’s the usual deadline-getting-your-butt-into-gear deal as I rush to make sure it all looks tip-top.

Despite the fact that it’s taken me a lot longer than I expected, I’m really proud of the result – it’s going to be a great representation of the project and a great show real for both my work and for Suze’s Catalyst Theatre Arts, the company she runs with her sister, who throw a lot of work my way so it’s nice to be able to give them some marketing material out of it, too.

So it’s not been the best of weeks to try to get to grips with all the extra bits and bobs that go with being a Chairman as opposed to a trustee, but I’ve already seen a whole new side to the charity and what we do. I’m also delighted to see the way our two new trustees have slotted in to the team. The problem with having a team that’s as close-knit as the Live Life Then Give Life team are is that when you introduce new people to the equation it can be difficult for them to find their place and not feel out-of-the-loop or left out. But the current board of trustees have really taken to the new guys and have been working brilliantly with them from Day One, which is such a great feeling not just for me but for eveyone.

Hopefully now things are on a slightly more even keel, I’ll be keeping the updates coming through on a more regular basis. Unless work gets manic again, I guess…