Archives: Family

I’ve managed to grab half an hour before my day starts today to rap out a bit of a blog about getting here and what it’s all like.

The first think I have to say is that I’m sitting at a computer in LIPA’s Learning Resource Centre (essentially the library and computer room) and there’s a big plaque on the wall listing the sponsors of the room. Amoung a few well-known corporate clients, it also lists Jane Fonda, Billy Joel, David Hockney and Elton John. Reading those names on the wall of the place I’m going to be studying theatre for the next 3 years gave me such a boost this morning – this place matters.

The first few days have been crazy. I left home – as you may have seen on my Twitter feed – at almost 6am on Monday morning to get up here for my enrollment at 10. We managed to do the trip in almost precisely 3 hours, which was pretty awesome at that time in the morning, and got my keys for the flat straight away, which gave us time to unload all the stuff from the car (all 7 boxes, 1 suitcase and 1 holdall) before I had to be at uni.

I got enrolled and then filtered into the Paul McCartney Auditorium (how cool!) for intorductory talks about the place and what’s expected of all the freshers. In the afternoon, after grabbing a quick bite of lunch and then waving Dad off, I met with my course group, the TPDT guys (Theatre Performance Design and Theatre Performance Technology – essentially the same course but with slightly different focus between designing and practical tech-ing). The tutors intorduced themselves and outlined the course, then we had a couple of hours to kill before a group social in the evening, which turned out to be great fun.

Tuesday was in at 10am again for more talks and safety briefings, then a fairly free afternoon which I spent shopping for bits and pieces I’d not managed to get before hand or had left at home. In the evening I popped over to a friend’s house and we chilled and drank vodka and cokes (made with the roughest vodka in the world – the joyous life of studenthood) before her flatmate and I hit the town for a couple of hours to make the most of £1.50 Jaegerbombs (Jaegermeister and Red Bull for the uninitiated) before calling it a night around 1am.

Wednesday was, blessedly, a day off, although I woke up at 4am and couldn’t get back to sleep so I ended up walking down to the Albert Dock at 7am, which was actually beautiful. Got back to the flat around 8.30 and proceeded to sleep til 2pm. Nice.

I pootled in town in the afternoon and grabbed an iPod dock – my room currently has no TV, no internet, no computer or anything, so I needed something to break the silence of the room that didn’t involve me walking around with my headphones in 24/7.

Last night was Blind Date in the LIPA Bar, which was sadly compered and played out by third years who spent the whole evening drunkenly making in-jokes about their mates, leaving most of the freshers feel pretty confused and stupid – not the best was for the Student Board to welcome the newbies in the middle of freshers week, it has to be said.

And now, once I finish this I’m off to grab a chocolate bar from Julie and Julie in the canteen downstairs (they’re great – the ladies, not the chocolate bars) to give me enough energy for the next 4 hours of the TPDT Treasure Hunt! How cool!

Once I’ve sorted myself with a laptop and internet connection at the flat, these blogs will hopefully get a little a) shorter and b) more regular, but until then you’ll have to make do with the Twitter feed on the left of the page and random updates on here as and when I get chance to jump on a comp here.

This is going to be a short summary of how we got to where we are, but suffice it to say that the end result is WE’RE GOING TO HAWAII TOMORROW!!!

It’s been a crazy last 8 days, starting with feeling slightly odd leading right up to Saturday’s blog detailing my admission. My lovely new iPhone then decided to stop working as an internet-receptacle so I couldn’t update the blog any further.

The docs essentially said on Saturday that they a) had no idea what was wrong with me but b) that it looked pretty bad. Although the X-ray techs refused to CT me, the docs between them had come upon the summation that it was some kind of chest infection which meant that whatever happened, Hawaii was off.

When they came around Sunday they told me I was well enough to go home – they still didn’t know what it was but the 24 hours of oral antibiotics they’d had me on were seeing my infection markers dropping and things looked OK. I thanked them and they left.

Them then team leader reg for the weekend came back in and asked about Hawaii. Essentially, he said, they needed to ask themselves 3 questions as my doctors:

1) Was I well enough to go?
2) Was I a danger to other passengers on a plane (ie, through Swine ‘Flu etc)
3) Was I fully insured in case anything worsened or happened beyond what they’d observed.

The answers, as he gave them, were:

1) Yes, as far as they were concerned.
2) No, as they didn’t believe I’d had Swine ‘Flu in the first place
3) They would need me to see.

Cue a frantic rush around last night to try to find out what our insurance policy covered. What we came up with was that because the admission happened before I flew, the chest infection then counts as a pre-existing medical condition which they must be made aware of or no treatment related to it in any way will be covered while we’re away. Being a Bank Holiday weekend, this meant that we were now unable to inform them of the change until we flew, which essentially voided the policy.

Cue frantic scramble to find a company that would cover me for CF, lung transplant and a resolving chest infection – all three of which would need to be covered if I needed any treatment for an exacerbation of my current condition. After a pleasantly home-bound night’s sleep we spoke to a company this morning and – in brief – we shelled out a very large amount of money to ensure we didn’t have to claim back a slightly very larger amount of money for canceling the holiday and we were set to go.

Cue frantic running around the Bank Holiday shops today to fill my uni shopping list, my holiday shopping list and still get back in time to pack it all into boxes, bags and suitcases in time to head over to the ‘rents this evening for dinner and sleeps so they can run us to the airport at silly o’clock tomorrow morning.

It’s been a total whirlwind and both K and I are pretty overwhelmed by it all, but the bottom line is that we’re on our way to Hawaii. And when I get back I’ll have less than 12 hours in Liverpool before the start of my first ever term of uni. At the end of it all, things couldn’t really be more exciting. I just wish I’d done it all in a slightly more boring and less melodramatic way.

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.

The truth (and the new-look, uni-fied blog) is out and I’m ecstatic, truly, truly over-excited and jumping around like a small child after a Sunny D and Haribo smoothie – I’m going to uni. But not just any uni (why do I want to write “A Marks and Spencer’s Uni” there…?) but the Liverpool Institute of Performing Arts, LIPA, the academy of arts founded and patron’d by Sir Paul McCartney.

When I was a mere wisp of a lad at 16 I spent 2 of the best weeks of my life up in Liverpool at a LIPA summer school and have wanted to study there ever since. When I left school at 18 with doctors heavily advising me that it would be severely detrimental to my health to attend any university, I pretty much gave up hope of ever studying at all, let alone at my dream uni.

However, the idea of going to uni has been playing around in my head most of the summer as I’ve been battling my daemons and fighting to work out what to do with the rest of my now very open life. I had completed and submitted a UCAS Clearing application and sat waiting for A-Level results day to see what I may be able to find.

First thing in the morning, I jumped on and was surprised to find a course advertised at LIPA as they don’t usual support the UCAS system. So I gave them a call and spoke to a nice man who had no idea what I was on about. After a short while of to-ing and fro-ing he seemed to recall a late decision to include the course in clearing and suggested I send a CV over.

Having prepared my UCAS application and not much else, I hurriedly cobbled together an appropriate-looking CV for the purpose and emailed it across. I dashed over to Mum’s to have a quick chat and got a call while I was there from the lead tutor on the course offering me a place. It was that quick, that simple and that utterly amazing.

I will be studying a 3-year BA(Hons) in Theatre and Performance Technology, which covers pretty much all bases from lighting and sound to stage and production management with elective modules in directing and incorporating video into live performance. The course couldn’t have been better tailored for me and the opportunity couldn’t be more perfect.

I cannot even begin to express my thanks that I feel for my donor. While you’re reading this, please take a moment to think of their family and the precious, precious gift they gave me nearly 2 years ago. Without their courage and selflessness and the wishes of my donor, I wouldn’t be here, let alone physically able to pursue this opportunity. If you’re not already, go here right now and register as an organ donor – you may just change someone’s life like mine.

K and I have got a manic week getting everything squared away before our holiday, but for now I’m just floating on a cloud of magical happy vibes. Or it could be the Haribo…

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.

Apologies for the lack of updates. As a wedding gift to her brother from us, K kindly offered for us to look after their 12 year-old, 4-year-old and 3 year-old for a week while they had a honeymoon just the two of them.

I blithely accepted and agreed without really thinking it through and clearly MASSIVELY underestimating the whole thing. We’re having an awesome time, but we’re both shattered and I’ve hardly managed to get anything for Remembrance done this week, which is a bit rubbish. I’m trying to find us a Casting Director to work with, but since it relies on being able to head to London to meet people, that’ll have to wait until next week instead.

I’m also actively recruiting for the DP role and have a load of showreels to get through to find us the best person for the job, but that’s going pretty slowly too. Am just about to put dinner on so we can all sit and eat together, then I’ll be trying to get through a heap of them tonight.

More updates when things get back to normal at the weekend.

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!

So this week (well, since Wednesday) has been spent in Plymouth, home of 42 Commando Royal Marines, for their homecoming celebrations after their 7-month tour of Afghanistan.

Festivities started with a parade through the centre of Plymouth on Thursday morning. The Marines had hoped that the crowds would be big enough to ensure a solid single-file line of supporters along the route. They were wrong. Very, very wrong. There was a solid line of crowd around the whole route, but it was 3-4 people deep everywhere and at points that rose to 7 or 8 people deep. The reception was fantastic and the Marines were clearly all stuggling with a mixture of emotions ranging from proud to humbled, relieved to saddened.

Nothing like a parade of all the men in the Commando serves to highlight the loss of the 3 men who never returned. As the Commando filed passed the families of the fallen men – Marine Georgie Sparks, Marine Tony Evans and Lance Corporal Ben Whatley – on the dais, they saluted their memory. Everyone in the crowd, as jublilant as we all were, spared a though and shed a tear for the families who didn’t get to see their sons, brothers, husbands and fathers marching past with their mates.

After the parade the family all took a wander with Bro up on the Hoe, before grabbing a cracking lunch on Princess Street, after which he left us to return to Bickleigh for the tree planting ceremony for Georgie, Tony and Ben. Doubtless an emotional occasion, it does help to provide all sides with closure on the events of the last 7 months.

That evening we headed out to the Tanner Brother’s Barbican Kitchen for a meal which blew us all away. After dinner we headed out for a nightcap before calling it quits pathetically early for a party-week in Marine-ville.

Friday began with the worst hotel breakfast in the world – disappointing as the hotel at been pretty good up to that point – followed by a parade and medal ceremony back at the Bickleigh barracks, which we managed to see but sadly not hear since either the sound-system went wrong on our side of the field or else the wind simply carried the noise off.

Then we grabbed a couple of cheeky drinks before heading into the middle or Dartmoor to the Warren Pub/Inn/Freehouse where I had my first rabbit pie for absolutely ages. Apparently renowned for their pies I was soon jealously coveting Bro’s steak and ale pie after having a sneeky dunk of a chip in the gravy. Heaven. If you can find it out on the Moors – nestled at the side of the road just beyond Princetown – you’ll have a gem of an experience and a cracking meal.

After heading back to Bickers and then into the country for a bit of a walk – more sheltered than the Moors but with no less phenomenal a back-drop – we shot back to the hotel for a little R&R before another night out. This time starting at Artillery Tower restaurant, a quaint and friendly little eatery crammed full of character and quirks, we then headed back to meet Dazz at the hotel after his trek down from Leeds to spend some time with his cousin – also a 42 man – for a drink.

The hotel bar was populated by a number of…inebriated people who were all, let’s say, of a certain age. A large contingent of them were present to commemorate the HMS Gloucester’s – The Fighting “G” – stirling work during the German invasion of Crete before it’s eventual sinking in 1941. As soon as they realised/heard/overheard that Bro was a Marine, the place exploded into a riot of congratulations, handshakes, backslaps and war-stories. From a bunch of people who’d never actually been to war. Go figure.

Once we’d extracted ourselves from the bar, we headed into town and hit the nightlife hard. I eventually stopped drinking around midnight, knowing that making myself ill is a big no-no post-tx, but stayed out with Bro and Dazz watching the latter trying to keep pace with a man he should never be able to keep pace with. Ouch.

This morning, once we’d risen from our stupor, we headed out to the Dartmoor Diner outside Bickleigh for a bit of brekkie before hitting the shops on the Barbican from some bits and pieces, then heading off on a leisurely drive home.

It was a great “weekend”, spending time with my Bro and the family all together, eating and drinking far too much, but enjoying every minute of it. As you get older you realise how rare these occasions become when you can all spend time together without someone having to dash off somewhere and it was made all the more special by the true purpose of the occasion to congratulate 42 Commando Royal Marines on everything they’ve done for our country doing a sometimes thankless job. And, of course, paying our respects and tipping our hat to the three men for whose families there was no such celebration this weekend.

God bless you all, Georgie, Tony and Ben – let your deaths not be in vain.

I will update the rest of the blog at some point in the near future, but today has been too good to pass up the chance of blogging about it immediately.

As I’ve rather cryptically mentioned over the last couple of weeks I started writing a project that I’m really keen on. Many of you will now know the name of Chris Jones, a friend of mine who set out in 2007 to make an Oscar-winning short film. Many scoffed, but all were eating humble pie when he was short-listed down to the final 7. Now, that short (Gone Fishing, buy it here, it’s awesome) has landed Chris with all sorts of meetings and potential jobs as well as a top-flight manager Stateside.

Never one to re-invent the wheel when others have ploughed the furrow previously (nor, clearly, afraid to mix a metaphor), I thought I’d see if I could write something that might hit the same kind of notes and be the same kind of showcase as Gone Fishing has been for Chris.

So I started writing one night and came up with a story I liked. I sent it to my brother to look at and he liked it. More than that, he sent me 2 pages of notes to bring it up to scratch and then today we’ve spent the afternoon working through the script and really ironing out the detail of some very heavy military sequences.

What I have now is the first official draft of what I believe could become my calling card to the industry. *EGO ALERT, please look away now* I’ve known for a long time that I have the talent to succeed in this business, but I’ve never quite worked out how to convince other people of what I know I can do myself.*EGO OVER* This is it. This is the script that can change everything for me – I 100% believe that.

More than that, my brother likes it so much he’s putting the wheels into motion to get me the kind of support I could only dream of to help get this made. I can’t go into detail here as it’s in way to early a stage, but mark my words – keep your eyes out for Remembrance. It’s going to rock your socks.