Archives: Day-to-day

Because I can’t resist a decent plug for a friend:

“Are you a bit of a Musicals fan?

Want to help raise money for Charity simply by being entertained?

On Wednesday 23rd July 2008 a group of talented young performers will be bringing you an all-singing evening of Cabaret Favourites, featuring your favourites from the West End, Broadway, and Beyond! The performance is at Bourne Hall, Ewell (3 minute walk from Ewell West station) and starts at 7.30 pm. Tickets are £8 for adults, £6 concessions.

Tickets are already on sale so to get yours please contact Emily at emily@livelifethengivelife.co.uk asap. Please also get in touch if you or your company may be able to sponsor, advertise or support this event in any way.

All proceeds from the event will go to Live Life Then Give Life <http://www.livelifethengivelife.co.uk> – a charity which raises awareness about organ donation and transplantation and supports those awaiting transplant.

Many thanks in advance for your support.

Emily and the Cabaret Favourites Team.”

The last one was a knock-out, by all accounts, so if you’re near by or can make the trip, get some tickets and check it out.

Check this out.

Just 12 months ago the situation was looking pretty grim. Today, skipping off to Oxford for my annual review (the yearly MOT that all CF centres perform on their charges) had a whole lot less of a downer on it.

Last year, they didn’t even make me do the exercise tolerance test, which is a kind of modified bleep test involving shuttle walks of 10m at ever-increasing speeds to see how far you can get until either your lungs or your legs give up.

This year, I practically flew up and down the corridor, or so it felt. In the end, it was the tightness in my calves which really did for me, my lungs seemed happy enough at the exertion. Talk to my old physio (never to treat me again!) yesterday, when I caught up with her over a cuppa, she pointed out that my muscles are still very short of protein and so struggling to get back up to the speed I have managed previously, which is why my performance may still not quite have been as good as I was expecting.

It’s so unbelievably cool to see the team at the hospital when I’m not gasping for breath and feeling so crappy the last thing I want to do is hear the gossip. Now pretty much all I do with them is gossip, it’s great. I’ve developed such a friendship with everyone there over the years we’ve been together and I really do miss them all.

I know it sounds a bit odd – and I certainly don’t miss how ill I was, or how bad I felt – but over the years you develop a very close relationship with your care team; they understand you, they know you almost better than you know yourself and they very often know exactly what you’re thinking. For the last year of my care more than before, I was heading to the hospital often as much as twice or three times a week, so the bond with the team only got stronger as they worked their magic to keep me alive long enough to get my life-saving transplant.

I can never fully express the gratitude I have for everyone at the Churchill in Oxford. My life in the past has at times resembled a living hell, however much of a brave face I tried to put on it, but they have always been there for me. I’ve been able to talk to them when I’ve been too scared to raise things with anyone else, I’ve been able to laugh and joke and try to keep my spirits up. But more than anything, I’ve been safe in the knowledge that they were there – always ready and waiting with whatever I needed, whenever I needed them.

I don’t for one second miss my old CF lungs, but I do miss the interaction with the friends I made there. I just have to make more effort to stay in touch now I don’t need them every day of the week.

Last night I headed down to London to meet up with an old, old schoolmate who’s now working as Press Officer for a small record label and shop called Pure Groove. They were having a film night of music videos in their Smithfield shop to which Ben had invited me to scope out what’s going on in the music video scene at the mo. The intention is that between the two of us we’re going to start producing some vids of our own, which is something I’ve wanted to do for a while, but it’s taken the kick up the rear from Ben to get me really going.

There was some really interesting work on show last night, from some well-known bands and artists and some from bands I’ve not heard of. That’s not saying much, mind, since my musical knowledge is pretty much up there with my knowledge of particle physics, although I do know what I like (which is most things, really).

I’m hoping that I’m going to be able to get myself together to start pushing myself creatively again now I’m back on my feet and full of energy. I’ve just instigated another new project, which I’m also really excited about.

It’s called Untouched and it’s a photography project created as a reaction to all the heavily-airbrushed “perfect” pictures we see of celebs in magazines these days. My aim is to create images of people using only natural light and with no digital manipulation at all.

Hopefully, if the shots turn out well enough, I’ll be able to set up an exhibition at some point and maybe even sell them, but for now it’s more of a hobby-project to get me back into a fully creative mindset. The great thing about it as a project is that I have all that I need to get it underway right now. I’ve got a good-quality camera and a good bunch of friends willing to model for me, which is all I need. Incidentally, if you’re interested in modeling, drop me a line here and we’ll get together.

Two years ago today, my best friend turned into something more.  Since the summer of 2006 we have been even more inseparable than we had been before (if that’s possible) and I’ve found a new meaning to life and love.

I have no doubt that I would not have lasted as long as I did without Kati by my side – her relentless enthusiasm, her childlike playfulness and her positive spin on the most difficult things carried me forward in a way I wouldn’t have managed alone.

People say that love is the most important thing in life and that finding someone to love is the best.  Personally, I believe that friendship is more important – finding someone you trust completely and want to share experiences with, someone you can talk to, laugh with and be yourself all the time with.  I’m just lucky to have found all of that in one person.

To all those still looking, never give up hope and to all those who’ve found their “one” – don’t ever forget how lucky you are and don’t ever take them for granted.

I love you Kati, thank you.

What a night that was.

The great and the good of Ipswich gathered in force to raise money for the CF Trust and for a local children’s charity and altogether they raised well over £25,000.

It was an amazing experience to be in a room with a crowd of such wealthy and generous people.  The main bulk of the night’s money was made in the auction and silent auction, with people bidding against each other for things they didn’t even necessarily want in order to push the price up and raise more money for the cause.

I have to say, modest as I am, I was really happy with my speech.  It didn’t come out exactly as I’d written it, but I hit most of the beats I wanted to hit and I made the points I wanted to make without rambling or stuttering when I got a bit lost.  In fact I’m told that no one noticed that I got lost anyway, so that’s pretty good.

It was a long, long night, though – the first time I’ve been out “on the town” till the early hours since my op, and for quite  a while before then, too.

I was bowled over by people’s reactions to the speech and their wonderful giving spirit throughout the evening and was even more delighted to hear from the Editor of the newspaper that runs the event that next year the CF Trust will be the sole beneficiary.  And I get to go back again!

I’d like to extend a huge and grateful thanks to everyone who went along for their generosity of spirit and kind words they offered me on the night.  Thanks to people like these, the CF Trust can continue it’s work to try to ensure that we stop losing young lives to this terrible disease.

Here is a copy of the speech I gave this evening at the Evening Star Ipswich and Suffolk Press Ball, “The Champagne Ball, sponsored by Call Connection to raise money for the Disability Care Enterprise and the Cystic Fibrosis Trust.

“It occurred to me when I set about preparing this speech that I would actually have to do more work tonight than I’m used to, which I’m frankly quite miffed about.  Six months ago, I had a life-saving double-lung transplant that has completely transformed my life.  From staring into the abyss I’m now scaling mountains – almost – and my life as it was is nothing but a memory.

While all this is brilliant for me, it makes public speaking a whole lot harder.  I may have the breath to describe things to you much more easily now, but before my op I hardly had to say anything beyond standing up and introducing myself.  I’d walk into a room huffing and puffing, trailing my portable oxygen cylinders behind me and coughing my lungs out – there wasn’t a whole lot of need to describe how bad life with CF could be, I was living proof.

I’m now living proof of something else entirely – the miracle of organ donation –  but as much as I like to harp on about the desperate need for organ donors in this country and urge people to sign the organ donor register on the UK Transplant website,  it is still equally if not more important to me to continue to let people know just how horrific life with CF can be.

If you’re lucky these days, with an early diagnosis and a good medical team at a top hospital behind you, it’s possible for people with CF to reach their late teens and early twenties without a huge amount of trouble.  But for every person who skips the harsh childhood years, there’s at least one more who doesn’t make it into adulthood.

Having your lungs slowly fill up with thick, sticky mucus to the point at which you have less that 20% of the lung function of a normal person isn’t any fun at all.  Going through it as an adult was extremely hard and reaching the point at which my doctors considered me for transplant, giving me only two years to live, was impossibly hard to get my head around.  Going through that as a child – as far too many CF sufferers do – is beyond my comprehension.

Before my transplant, when I was on 24-hour oxygen, a good friend of mine who’d had a transplant passed on to me a portable concentrator – a machine that supplies a limitless quantity of oxygen by generating its own from the air, rather than having to rely on bottled supplies which lasted a few hours at best.  This was something of a lucky concentrator – a bit of a talisman – as it’s previous 2 owners had received their life-saving transplants.  It proved to be so for me, too, when I received mine when I can’t have had more than weeks left to live.

After I’d recovered, I continued the chain and passed Claire (as the concentrator was Christened before it reached me) on to a good friend of mine called Sam.  Like most things , though, luck runs out and just over a month ago, Sam lost her fight.  Although a transplant would have given her – like me – perhaps a few more years, the medical advances that the CF Trust are working on constantly and some of which are being trialled as we speak would have prevented the need for that even to be considered and the effervescent, out-going, wonderful character that Sam was would still be with us.

The CF Trust needs 6 million pounds this year to keep its research moving forward and I’m here to ask you to help stop the loss of people like Sam and the 50 or so young people we lose to this malicious and destructive disease every year.

Thank you for coming and thank you for listening.”

If it wasn’t so completely awesome, I may well have become bored of my near-constant refrain now, “what a difference a year makes”.

Not much more than a year ago, we had an exciting helicopter trip to my Godfather’s house near Ipswich to spend the day with them and see their newly almost-finished renovations to their place.  The flight, while being an added bonus, was actually a necessity – there was no way I was going to be able to cope with travelling a 4-hour round trip by car in a single day.

We’re back here this week, ostensibly to give a speech at a CF Trust fundraiser, but also for K and I to have a bit of a get-away and take some time to do the chilling out we were supposed to do in the Lakes this time last month.

Last time we were here, my abiding memory is sitting on the side of their gorgeous outside pool, trailing my oxygen tubing back to the small portable cylinder behind me, dipping my feet in the water while I watched everyone else swimming, splashing and having fun.  This time round, I’m right in there with them, swimming, splashing and having fun.

It wasn’t until I was ducking and diving under the water, swimming lengths, seeing how far I could swim on one lung-full of air that I remembered how much of a water baby I used to be.  Back in the days when I was a littl’un and my chest wasn’t too bad, I used to spend any time I could immersed in water.  I had swimming lessons like a lot of kids, yes, but I also simply wallowed in water.  Anywhere we went that had a pool – hotel, friends’ house – I’d be in there almost from the moment we arrived until I was dragged out to dry off before we left.

Floating around the pool in the sunshine yesterday, I suddenly remembered all those years ago and the sheer enjoyment I got from being immersed in water.  It was heaven to be able to indulge myself again. 

I spend so much time these days thinking whether or not I’ve been happier than I am right this minute.  Every day seems to bring a flood of new experiences, old memories and to highlight just how much my life has changed in the last 7 months.  It truly is a miracle and I truly feel like I’m managing to make the most of it.

What an awesome day today has been – one of the best since my transplant.

Today I achieved something I’d never have thought I could achieve and done something I never thought I’d see myself doing even before my transplant.

We had my Godson up for the day with his mum and dad at my ‘rents and another family of really close friends with two kids as well and we all traipsed across Willen lake to the high-rope course on the far side of the sports lake.

This thing is pretty epic – a collection of fairly challenging obstacles suspended around 20 feet above the ground on the first level, with an upper level twice that height.  All harnessed and hard-hatted up, we set off around the first level.

The interesting thing about the course is that it’s not really possible to get down once you’ve started, so by way of a tester they put the most intimidating obstacles first, so if you really, really don’t like it, you can turn back.  I must confess, halfway through traversing the 10′ wide section of climbing wall with the world’s tiniest footholds, I seriously considered it.

I’m glad I didn’t though, as the rest of the course was pure joy.  I only struggled at one point, which was a section which required excellent balance (not something I’m renowned for) and good upper-body strength (something which has yet to grace my new body).  With that out of the way, the rest of the course was *relatively* easy.

I was disappointed that the lower level required so much physical exertion that I didn’t have anything left in the tank to attempt the higher, more challenging level this time around, but it gives me a great incentive to build my strength and stamina back up and conquer it next time.

The final step of the course is a 50’ rope drop from a tower in the centre of the courses.  Hooked onto a decelerating wire, you step off a platform for a few moments of free-fall before the rope goes taught and the drum begins to slow you down, depositing you on your feet/butt at the bottom a couple of seconds later at a manageable speed.

Before my op, healthy or not, I wouldn’t not have dreamed of doing something like that in a million years.  To be honest, I’m still not entirely sure what possessed me to to it today, but I did.  I stood at the top, harnessed up and clipped on and wondered out loud what I was doing there before serenely stepping off the platform and dropping to the floor in a matter of seconds.  On the way down it was the most horrible thing I’ve ever done, but as soon as I hit the floor I wanted to go again.

Doing a course like that really rammed home once again the astonishing difference these new lungs have made to my life.  Even after completing it, I still had enough energy to go back to Mum and Dad’s and play in the garden with everyone, as we got through games of Butthead, Scatch and footie.  It’s an amazing feeling to finally be able to run around and play in the garden with people again.

I always said before my op that Transplant is a bit of a gamble – there’s no way of knowing how long it’s going to last for and what your quality of life is going to be like, but I said I’d be happy if all I got was an extra six months and the opportunity to play football with my Godsons again.  This weekend, as I ran and missed yet another perfectly weighted cross just wide of the far post, it occurred to me that I’ve now hit both of those milestones.  Everything I wanted before my transplant, I’ve got – I couldn’t be more blessed and feel more happy and content with my life than I do right now.

Transplant is amazing. Full stop.

Under pressure from outside sources (no names, Lisa), I have forced myself to my desk to write an update.  I had – honestly – been intending an update for a while, including some back-dated film reviews (it’s been a busy week on the film front) but just haven’t seemed to find the time to do it.

My energy is still coming in fits and starts.  After a busy and productive week last week, this week has been a little more relaxed and less work-focused.  The new issue of CF Talk is taking shape, but is now at a stage where I’m waiting for our writers to draft their articles and send them in, leaving me without a great deal to do other than sit and wait.

Live Life Then Give Life is going from strength to strength since our charity registration came through and there are a number of projects being mooted between us as I speak, sadly none of which I’m at liberty to disclose just now.  If you live in the Manchester area, though, what this space over the next couple of weeks because we may have something exciting to announce.

I have also got myself back on the writing wagon, having taken my Headliners screenplay up to 40 pages and still going, which had really excited me as I whenever a hospital is around and about I seem to lose a great chunk of my creativity and imagination.

In fairness, I suppose it’s not the hospital so much as the condition I’m in.  After all, if a hospital stay is called for it means I’m not doing well and if I’m not feeling well then, as has always been the case, my creativity and artistic expression is the first thing to go.

Next week I’m due to give a speech at the Ipswich Press Ball about CF, which I’m really looking forward to – black tie events always excite me, mostly because the old performer in me loves getting dressed up and being the centre of attention.  Unusually for me, I have actually written my speech this time.  It’s not long, only a couple of minutes, which I would normally busk my way through relying on my natural charm, wisdom and eloquence, but clearly my faith in myself has deserted me.

Actually, quite apart from this being a posher and more official deal to the kind of speech I’ve made in the past, I also had some strong ideas for the speech that I didn’t want to lose in the weeks building up to the speech.  In the process of getting my ideas down on paper I got carried away and ended up writing the whole thing.  After the ball, I’ll pop the text up on here for you all to peruse and tell me where I went wrong.

Other than that, not much has been happening, really.  Although looking back over what I’ve just written I realise I started by saying I’ve not been doing much but have now clearly proved I’ve actually been quite busy.

Next week is hopefully dedicated to CF Talk and preparing articles for submission to the designers, with a short break away in Ipswich at my Godfather’s place for a couple of days of proper chillage before the Ball.

Promise I’ll have more updates on the boring things soon, and won’t leave it so long.  Mind you, how often have I said that…?

Another trip to Harefield yesterday, this time just for a clinic visit. Was all a bit silly, really, since by the time they saw me in clinic they hadn’t had my blood results back, so they didn’t know if they needed to change any of my meds or do anything else, which meant the whole visit was a bit pointless. Apart, I suppose, from the fact that they can at least look at the blood work today to see if anything troubling has come up.

The last couple of days have been pretty busy and I’m feeling it catch up with me today. It’s a very odd feeling, different to my rest-periods from before. I can have a couple of days of being very busy and working flat-out, but then need to take a day off, but it all seems a little unpredictable at the moment. Before my op I had got used to the fact that if I did something, the next day would have to be a rest day. Now, though, sometimes I can get away with doing lots and other times it seems like I need to rest more than usual.

I’m sure this is all part and parcel of the recovery process, coupled with the fact that my body is still working it’s way back to full strength after the virus double-whammy of last month. What still boggles my mind, though, is that even when I’m tired and need a bit of rest, I can still do things. Before the transplant, if I was tired it was an all-encompassing tiredness that wouldn’t let up until I’d slept it off, no matter what time of day or night it was. Now, it’s more of a general slow-down – everything just takes a little longer and I don’t feel as sharp as I was, but I’m by no means bed-ridden.

What’s funny is that I kind of assume that this is the general “normal people” kind of tiredness, but since I’ve never experienced it before, I’ve no idea if it’s a “normal” thing or not – whether I’ll get used to it and stay like this or whether it’s a transplant thing that will change in time.

There are so many things to learn about a new body post-transplant that go way beyond just getting used to having breath in your lungs. I’m getting there, slowly but surely, and learning new things everyday. Even six months on, it’s still a journey of discovery and it’s still as exciting now as it was when I took my first steps back to my room on the ward.