Archives: Improvement

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.

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

This week we have been rudely invaded by the real world.  After 10 months of existing in a perfect little post-transplant bubble, the time has come to look at things that people out in the big wide beyond have to spend time looking at.

With K off to uni in 3 weeks and counting, she is, naturally, going to have to give up work.  The full-time commitment of the course, coupled with the 3-hour daily commute is going to sap every last bit of energy she has, making weekends a time for rest and recovery and not for the usual kind of student money-making that normally earns the bookworms a crust.

So it falls on me to start winning the bread for the house hold.  It’s a very strange position to be in, seeing as I haven’t been in paid employment since I left Northampton Theatres in April 2005, nearly three-and-a-half years ago.

One thing I’ve learned from friend-of-the-blog Emily is that returning straight into a ful-time job post-transplant is a bit of a no-no.  Although I now have more energy than I think I’ve ever had in my life (barring, maybe, my early years), that doesn’t automatically equate to being able to put up with the stamina required for a full-time job and the stresses and strains that go along with that.

Instead, I’m going to be looking for something smaller and more part-time, but then I hit the thorny issue of benefits.

At the moment, I’m still covered by incapacity benefits because I’ve been under doctor’s orders not to work.  The idea of incap is that in order to help you return to work, you are allowed to do a certain number of hours of paid work per week without incurring penalties on your benefits.  The trouble with incap is that once you pass the 16-hours-per-week threshold, you lose everything – there is no middle ground.

And it’s not just the incap that you lose.  Incap comes tied in with an entitlement to various other benefits including Housing Benefit and Council Tax Benefit, which basically means my rent and council tax are paid for me as my income isn’t high enough to cover them.

So, all-in-all, the loss of benefit will cost us in the region of £800 per month.  That’s an enormous gap to try to cover between working 16 hours per week on benefits and finding the rest of the money once you cross that line.  In effect, it means that you are forced to jump rom 16 hours per-week all the way up to a full-time 30-40 hour week with no middle ground and no safety net, beyond returning to incapacity benefit.

It sounds easy enough to try out full-time work and use the Incap as a fall-back option if you can’t cope, but that’s forgetting the psychological impact of going back to “illness”.  Everyone I know post-transplant has faught an incredible battle to get themselves back on their feat and rebuild new lives in the wake of a truly life-changing blessing.  What all that effort means, however, is that none of us want to return to the perception of “illness” that dogged us for years both before and initially post-transplant.

So the search for so-called “gainful” employment begins.  Where am I going to end up, who knows?  As long as it pays the bills, I have to be happy with it, but I would much rather have an opportunity to do the things I want to do with writing, filmmaking and educating than have to sit in a call-centre 37-hours a week.  Hopefully, the 16 hours I need to start off with will enable me to carry on with my personal projects and find a way to make them pay.

Watch this space!