Archives: Improvement

I must apologise for the lack of updates. If I’m honest, it’s been a rough time lately and with all kinds of work pressures and the added physical trial of training full-bore for the first time in my life, I’ve honestly been questioning whether or not this was going to happen at all.

I’m delighted to announce, however, that a major pharmaceutical company have agreed to fully-fund the 3 Peaks trip and that we’ll definitely be headed north to Scotland on Friday 3rd June to begin 24 hours of mountain-climbing, mountain descents and driving in between.

I was recently featured in another article online to promote not just the trip but the amazing support the guys at Topnotch Health Clubs have given me, including invaluable training advice and nutrition tips.

Really, though, there’s only one thing that stands out today, with 7 weeks to go. Today in the gym I ran, comfortably, for the first time in my life.

After a 15 minute session walking at speed on an incline on the treadmill, I spent the final two minutes jogging on the flat and for the first time ever – absolutely literally – I didn’t have to stop from feeling out of breath, sore in the legs or with chest pains1.

If nothing else, I’ve proved to myself and my donor that these new lungs are being used for the very best they can. I’ve never been fitter, never felt better and never been able to take so much on my plate as I have at the moment.

I cannot describe how amazing and brilliant this feels. And I cannot express my gratitude to my donor and their family for giving me the chance to feel like this. If you haven’t already, show your support for me, for the trek and for organ donation by signing-up and/or reTweeting/sharing the dedicated sign-up link from NHSBT, http://bit.ly/oli3peaks

1. not heart-attack chest pains, but I used to get a lot of pain across my scar when I tried to run [↩]

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.

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.

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!

I am now officially in recovery following my first full week’s work for, well, ages.

Although I’m frequently busying myself with many different things, most of the are done from home in the study and involve writing, planning or other such creative-type endeavours. This week has been all about graft. If you count workshopping as graft – it’s not building a house or anything, but it’s chuffing tiring.

Over the course of four days I’ve been working alongside my usual Youth Theatre co-conspirator with a group of 6-11 year-olds to teach them a little about the theatre, some performances skills and putting together a short performance with which to entertain their parents this afternoon at the en of thei week’s work.

I have to confess to having been mildly trepitdatious of the project before it began, having had such a hard 10-week term with this age group in my Tuesday sessions, but the week’s been a dream. The group are all fantastic, all keen and eager and willing to learn and absorb things.

We’ve got through so much stuff in the last four days – more, in fact than we got through in an entire term with their contemporaries up to now. They’ve been brilliant fun and really entertained us while we’ve worked with them. Being able to have a laugh with your groups is so important to creating a good working atmosphere in any theatrical workshop setting, whether it be Youth Theatre, short projects or professional rehearsals.

It’s been pretty tiring and a real test of my stamina, but I’ve impressed myself with my ability to stick with it all day. Most of the week, it’s really hit me on the way home and I’ve been a bit of a vegetable when I’ve got in, but I’ve absolutely loved being able to stay the course all day.

This was driven home to me more than ever at Holly’s Donor Drinks on Tuesday (read more about them here) I was chatting to Emily’s mum and pointing out the fact that I’d just done a full day’s work then steamed home to jump on a crappy train to bring myself down to London to spend all evening at a drinks reception, followed by a late train home that got me in just before 11pm for bed and up for work the next morning. That’s something I’d never have dreamed of being able to do.

It’s strange working with a group of young people and looking at them with their whole lives ahead of them thinking that I’m so amazingly blessed just to be in the same room as them. And all thanks to the generosity of my donor and their family for taking the time to talk about their wishes and sign the Organ Donor Register.

As part of what I think industry and teaching call “continuing professional development” – in other words, learning new stuff – I spent my day today at the Castle Theatre in Wellingborough training as an Arts Award adviser.

Arts Award is a qualification that young people from 11-25 can take which can not only help boost their confidence and push them out of their comfort zone, but also, potentially, set them up for moving forward with a career in the arts. Encompassing all art forms from theatre and film to stone masonry (really), young people can do projects on Bronze, Silver and Gold levels to achieve certificates which will doubtless then carry weight with applications to Arts colleges, universities and – potentially – lead to avenues for employment.

It’s a great scheme and a really exciting thing for me to be able to deliver. Initially, I’m looking to set up a scheme within the Grove in Dunstable, but I can also register myself as an independent centre meaning I can run and assess young people on the award independently of a venue. It’s a great string to my bow and could open a lot of doors for me.

Yesterday I ploughed through a huge heap of work and finished off very proud of myself for getting through my to-do list, then had a really hard session at the Grove with the Youth Theatre. There are two participants who are really hard to engage and it’s totally baffling me – I don’t know what to do to get them into the fold. Having tried just about all areas of drama this term, the other practitioner in the sessions and myself are at our wit’s end trying to find out why they come and what they want from the sessions – it seems impossible to please them.

On a brighter note, the rest of the group really enjoyed it and seemed to get a lot out of it and we got some really good feedback to signpost where they’d like to go next term, which makes things much easier for us in eliminating the guess work from the planning process.

Got back and chilled out with K watching some random TV as she unwound after her exam which , after considering she’d probably just about managed a pass with 50%, she rocked up to uni today to discover she’s got yet another 1st. Can people please comment on here to show her that she needs to stop underestimating herself and realise that she’s actually pretty damn clever. Enough said. Love you.

It’s funny because I’ve always laughed off those “Superman” posts from the time of my transplant 16 months ago, but I’m starting to think there might be something in it. I can’t fly, I don’t have X-ray vision and my hair doens’t go all slicked down when I take my glasses off. Most of all, I always wear my underwear beneath my trousers. The operative part of that word being “under”. But he is from Krypton so he may not have realised that yet.

My similarity to Superman merely extends to the fact that I appear to be powered by the sun. I’m very environmentally friendly in that respect – I’m solar-powered, just like Supes.

Last week I had really reached the end of my body’s ability to cope with what I was putting it through. I was sleeping in the daytime for the first time since my CMV set-back in May last year and I couldn’t rouse myself to do anything unless it was fundamentally important to either eating, drinking or earning enough money to eat and drink. I was slow, lethargic and just down-right knackered.

This week, in addition to having a little less to do – certainly less running around – the sun’s been shining and my batteries have been well and truly recharged. It’s such a wonderful feeling. I don’t know if anyone else watched the Comic Relief Kilimanjaro trip, but in it Fearne Cotton hit the nail on the head when she said, “People should never underestimate how good it is to feel normal.” That’s what I’ve go back to this week.

It’s interesting because even when I’ve been running myself ragged over the previous few weeks (or more), I’ve been totally aware of how great it is to be doing it all. I’ve never once taken my ability to do all these things for granted and every day I thank my donor and their family for allowing me to do it. This week has been a reminder, though, that as much as I enjoy what I’ve been doing, I really do need to make sure I leave myself some “me time” – some time just to sit and chill out and enjoy the world around me.

And that’s what the sunshine is great for – it’s 100% guaranteed to make you look out of your window in the morning and smile. At least it is for me. Even waking up at 5.45am, just seeing the first rays of sunlight and walking out to the car at 6.45am in broad daylight makes the day easier. I just feel more happy, more alive, more free when I can see the sunshine out the window.

My energy has returned and I feel like I can conquer the world again. I’ve got work coming in and I’m on target to finish my new screenplay by April Fool’s Day (no joke), which is motivating and energising me any more.

There’s a huge amount to be said for positive mental attitude, which is why the sun and summer help improve life so much. As a good friend of mine is wont to say, “This is my life and I choose to love it”!

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

At this very moment right now, I was supposed to be standing on a sunny but slightly chilly street in the middle of Bletchley shooting my first short film as a director since 2003.  Instead, I’m sitting at home in a T-shirt (and jeans, you mucky-minded fellows) and writing this.

The course of true love never did run smooth, someone once kind of wrote (gotta hate people who paraphrase the greats, haven’t you?), and the course of navigating my way to and through my first love – film – is proving exceedingly bumpy.

The film that was scheduled for this weekend is a script I’m really proud of that I’m confident I can turn into a brilliant little film.  Sadly, although it’s been in the pipeline for months, it all fell-apart mid-week when the actress playing one of the two leads (in fact, one of the two parts) pulled out due to commitments early next week.

I spent a furious few days scrabbling around trying to find a replacement before, in a phone call with the producer on Thursday night, finally giving up the ghost and conceding that we’re better off to postpone the shoot until we can find the right girl, not just any girl, to fill the role.

It has caused me a lot of pain over the last couple of days to come so close to shooting and then see it slip away, but at least I’d not spent any money on it.  I’m in a difficult kind of limbo right now where I know in myself that I have the talent to direct, but I also know that to all appearances outside my own head I have nothing at all to show for it.  Let’s face it, no one wants to give a job to someone who has nothing to demonstrate that they are capable in any way whatsoever.  No matter how much I bullsh*t or try to talk my way through things, without demonstrable evidence to show people, there’s no reason for anyone to have any confidence in me.

Which is why it was so important to me to get at least this first short under my belt and then move on to other things.  Sadly, that’s not to be, for now.

I’ve spent a good couple of days moping about this now, but yesterday I managed to pick myself up and start looking at the other projects I’ve got going, which had somewhat fallen by the wayside in the build up to the One Under shoot.  This succeeded at least in shifting my brain from mope-mode to active-mode, which is always a good thing.

Then a funny thing happened.  Feeling restless and couped up this morning, I wandered down to the corner Tesco to pick up some bits and pieces (milk for tea being the most important) and as I was walking back up the hill to the flat, I flashed back to the time back in January/February when I first walked down to the shop having recently returned home from hospital and then my parents’ and discovering the true capabilities of my new puffers.

Walking back up the hill today was immeasurably easier and less hard work than that time all those months ago and it served to show me – and remind me – just how far I’ve come in the last 12 months.

Sure, I’ve not managed to make a film in my first 12 months, as had been my hope, but far from being the enormous downer that I’d raised it up to be, I realised that with the new lungs I’ve got and the new chance at life I’m enjoying, I need to focus on the bigger picture just as much.  To never lose site of the fact that this time last year I wasn’t even well enough to be considering making a film, let alone being disappointed that it all fell through at the last minute.

Filmmaking is undoubtedly important to me and it’s 100% what I want to do with myself.  There will be more opportunities to come, at first of my own making and then, hopefully, at the behest of others who recognise what I’m capable of.  Until then, it’s just a case of sitting back and thanking God for the gift I’ve been given and the life I can lead now.

The choices are all mine right now, and that includes my attitude.  So away with the moping and welcome the joy of expectation.