Archives: Difficulties

I’ve been reading a friend’s blog this morning after another friend pointed it out to me. It’s a very interesting take on a couple of articles from the Sunday papers. Read it all here.

The pertinent part of the article for me was this paragraph:

“I use this medium to keep writing and putting my ideas out there, but could it also be a sort of safe haven of vanity, mainly accessed by friends and family, hardly ever questioned or criticized? There’s certainly at least a grain of truth in that.”

It made me reflect on what this blog is all about and why I’m still writing it. I don’t think it’s too strong to say that blogs are almost universally vanity exercises to some extent. While some bloggers are clearly onlt writing to massage their own egos and lead people to compliment them in various nice ways, all bloggers to a greater or lesser extent write because they want people to read it and read about them and their opinions.

When I first started writing SmileThroughIt back in 2006, the blog was intended for me to keep an online diary of the ups and downs [hopefuly] leading up to transplant. I wasn’t writing out of vanity – indeed some of the things I wrote about I didn’t particularly want to tell people – but rather out of the hope that someday someone reading the blog could gain some strength from knowing that someone else had been there before, much in the same way as Emily and I helped each other through experiences we shared on our road and the way Emily guided me through the frightening first weeks post-transplant when the world had changed instantly.

Even that, though, has an element of ego in it. I wanted people to read it and feel affected by it. Ostensibly I wanted to make a difference to someone else’s life, but how vast an ego did I have to think that words on a (virtual) page could really impact and comfort someone to that extent?

More recently, I’ve been blogging less and less as the minutiae of my day-to-day life is now not all that different from other people’s. I contemplated stopping the blog, but some of my readers protested and I kept going, but even then I’ve not blogged in the same open and honest way as I had previously.

Take Liverpool for example. If you read the posts on this blog from September, October and November you would have no inclination at all of the struggle I was having at the time trying to keep myself happy and weighing up the option of whether to return home or not. The ego in me didn’t want people to know I was struggling – I didn’t want people to think I was living an unhappy life as I felt it to be some kind of betrayal of my donor.

Now, this blog is here to serve almost nothing but my vanity, or so it seems. I can keep my writing honed, I can keep my family and friends abreast of what I’m up to and I can occasionally comment on something I want to comment on. But I’m not entirely sure what else it’s for, or whether it’s something I should still be doing.

Any which way you look at it, blogs are vanity. Not always consciously and not always in a negative sense (vanity’s not always a vice), but they are very insular and – as Miss Write points out – they largely go uncriticised.

The next month will be blogging as usual on this site, but in the new year you’ll see a radical overhaul to morph the blog into part of a new project that should be hitting the ‘net in January or February 2010. Keep watching, the ego has landed.

Happiness is an often elusive thing. It is at once indefinable and definite – you just know when you’re happy. It’s also vital to life. Or at least to mine.

A long time ago, pre-transplant before I was seriously ill, I promised myself that I would never have “just a job” – that I would always do something that made me happy. It didn’t matter to me if that was street sweeping, rubbish collecting or running the biggest company in the country; if I was happy that’s where I’d want to be.

This has come back to me over the last few weeks and months up in Liverpool. The ultimate truth is that I’m just not happy up here.

The decision to come to university was made in a rush of confused feelings about my past, my present and my future. At the time it seemed like a great option for me to explore what life is like outside the confines I’d previously lived in and that life as a student – something I’d missed out on when I was still in my teens being too ill to go – would suit me and re-energise me.

The theory behind the decision to come to LIPA was sound: I’d always wanted to come and when I saw the place in clearing I leaped at the chance to be a part of an institute I’d always wanted to go to. I didn’t, however, consider well enough the value of the course to the way I see my life panning out.

LIPA is a remarkable place – the people, the building, the students, the tutors, the shows: all outstanding. But it’s not the right place for me to be.

I’ve been unhappy here for nearly as long as I’ve been up here and it’s taken me a long time to reach the decision that I’ve come to. In the end, though, the opportunity to come back and start the rest of my life with my wonderful, devoted and utterly beloved K combined with the chance to pursue a project I’ve wanted to push through for well over 3 years was too good to turn down.

K and I have been through rough times in the last six months or so. We’ve been through rough times in our own, individual lives; we’ve been through tough times in our relationship and we’ve been through hard times in our lives together. But we’ve come out of it stronger and more supportive than we’ve ever been.

When I came back South a few weeks ago, I had a long chat over lunch to two of our closest friends who, when I aired my views about Liverpool, came up with one singular piece of advice: follow your heart and not your head.

I have spent too much time in the last few months thinking through everything. Wondering about what my family would think, what K’s family would think, what my friends would think and – most important of all – what my donor and their family would think. What it comes down to is this:

I want to do something that makes my donor proud to have bestowed this gift on me. And sitting up in Liverpool, miles from the woman and the people that I love and living 3 years of an already-shortened life being unhappy just isn’t right.

So it is with a heavy heart, but high hopes that I take my leave of Liverpool and LIPA later on today. It’s been a great ride: Wind in the Willows was an amazing show to work on and I’ve made some firm friends. But it’s time for me to do what’s right for me, regardless of what anyone may think or feel about it.

Am I sad to be leaving? Yes. Am I disappointed in myself? I am a little. Am I excited about what comes next? You betcha.

After everything that’s happen this week, there has never been a more important time for me to dedicate myself to the life I want. The life that makes me happy.

Nearly five years ago I had a night out in Milton Keynes that broke all the rules of CF – three of us who had become friends on the CF Trust’s messages boards (and another bunch of mates) met up for a party in town.

Toria, a long-held email acquaintance, and Jo, a young, effervescent and far-cooler-than-us teenager, hit the town harder than we probably had for a while and I’m inclined to think harder than we should have, too. Toria came back and crashed at mine, while we all promised this would be the start of many similar nights.

Now, in the space of just over a year, I’ve lost them both after having my life utterly change through my transplant. Neither of them were as lucky as me – both listed, neither got “that call”. I detailed in this post my emotions on Toria’s death, as we’d fallen – stupidly – out of touch over something that was on reflection utterly trivial and should never have come between us.

I was in touch with Jo right up to the end. Her transplant journey, although occurring a couple of years later, mirrored mine almost exactly with treatments, problems, worries and everything else. She was cared for my the same CF team in Oxford and was to be called to the same hospital for transplant.

This morning, however, she lost her fight. Buried deep in the technical rehearsal process of Wind in the Willows at the moment, I didn’t know about this until almost 10pm tonight and it has utterly shattered me.

Over the last few weeks and months, I’ve talked to Jo through all the ups and downs that come with the wait for transplant, but never for once imagined she’d be near the end. I left LIPA this evening and walked home with the night’s light rainfall mixing heavily with my tears as I thought back to that day in the mighty Oceana (pre-smoking ban and all).

Toria’s death impacted on me hard as I felt so removed from it. Jo’s has pole-axed me as I just wasn’t ready for it. Are we ever ready for the death of a beloved friend, or is it just that at some point we’re prepared?

I don’t understand how I can be presented with this chance to live my life how I want to and do all that I can when two of my friends have their chances ripped from them. It doesn’t make sense to me and I guess it never will.

I love you, Jo, you were so much more than just a friend at the end of the phone. I’ll miss you and I’ll think of you every day. The rest of my life is for you, honey – you and all the others who haven’t had the chance that I’ve been given.

Rest easy now, take a deep breath.

Sorry for the delay in posting about the awesome Save Jess-tival on Friday night, but it’s been a hectic and exhausting last few days.

Friday was amazing. A stellar line up including headline turns from Natalie Imbruglia and Ed Byrne as well as the fabulous Yeah Yous and Laughter for Life favourite Glenn Wool who unfortunately suffered from some sound issues meaning his set didn’t go down as well as it might have.

The revelation of the day for me, though, was the two singer/songwriters I’d not heard perform before. Susanna Cork is undoubtedly on the verge of great things – she has an amazing voice that’s beyond anything I expected and is a supreme talent. I can’t wait to pick up her album when it comes out and believe me, I’ll be plugging it like mad on here as soon as it streets.

The other half of the amazement came at first-timer Mr Robin K. Already on his Twitter feed he’s been hailed as the next Tim Minchin and on this performance you can clearly see why. Witty, emotional and often hilarious songs coupled with a little stand up in between made for a truly surprise package. Considering this is his first gig and he’s only been writing since the summer, this guy is undoubtedly going just as far as Susanna, albeit in a slightly different direction. You can check him out here.

The day itself was utterly exhausting. I was up at 8.30am to be at the venue for 10am and I worked through with various members of my team to 1am without a break. The crew who came in with their lighting rig and sound systems were brilliant, working far beyond their working time regs should have allowed them and never complaining or kicking up a fuss, just quietly getting things together to make it all happen.

Most importantly of all, our Jess was there throughout and thoroughly enjoyed it by all accounts, even allowing for the minor hiccup in the cab on the way home.

It was great to be working on something like this again, though, as something along the lines of a production/stage manager. It’s been a lot of work over the last 2 weeks, but really worth it for the buzz of pulling off such a massive gig with such big names.

Now it’s onwards and upwards, although downwards on the stage management ladder to ASM Wind in the Willows, which goes into rehearsals next Monday and promises to be challenging on lots of different levels. Can’t wait.

This week has been great and I’ve learned a lot and I’ve a lot to blog about, but right now I can’t actually take my focus off the bloody Student Loans Company – or, for that matter, the striking postal workers.

Between them, they are making my life an absolute hell, resolutely working together to mean I have no student finance, until today no student bank account and all together too much stress for the first week at uni.

In order for me to be able to claim my student grants and loans (and pay my tuition fees), LIPA have to log on to the SLC website and register me using my student number. My student number was sent to me in the post before I came, but I unfortunately left it at home. No problem, though, because the day after I arrived, K posted it up to me.

Of course, she posted it in the middle of the postal strike and, over a week later, it still hasn’t reached me. I think laterally and get K instead to go through my home emails and dig up the number that the SLC emailed me. I take that to the finance office at uni, who tell me it’s the wrong number. This is my customer reference number, not the student number – starting in a series of 3 letters – that they need.

Not a problem, I think to myself, and shuffle off to the uni computers to log on to the SLC website (with my customer reference number) and find my student number, which will of course be on there because that’s where all the details of my claim are.

But no. They don’t have the student number on their websites. They also don’t answer the phone when you call, instead leaving a very polite message saying we’re busy and then disconnecting.

So I have no student number and therefore the SLC don’t believe I’m at uni and therefore they won’t pay my money.

What this means is that the £900 grant I should already have had paid to me to kick start me off of benefits – which I’d been on up to now – isn’t being paid into my account. It also means that the £1000+ first semester’s student loan that was due into my account on Monday won’t go it. It also means that if I don’t get the letter and the number through from the SLC before the end of next week (end of September) I’m also going to find myself liable for paying the full £3,200 tuition fees for the years.

You may now, I hope, begin to appreciate why the joys of this week’s learning have paled somewhat into the background while I have to spend the whole weekend trying to work out how the **** I’m supposed to get my student number before Thursday.

I’m not a happy bunny.

For the record, though – the course is awesome. I’m off to measure up a piece of wall and convert it to 1:25 scale.

This is going to be a quick one as I’ve been up since 8 and in uni since 9 and am now flagging slightly.

Today was the first official day of classes for me at LIPA and I’m already assigned to work as an ASM on Wind in the Willows in November. As of right now I don’t know exactly what I’ll be doing for the show because we’ve yet to be taught that bit. It’s really exciting to be involed in a show so early on and in one that’s going to be such a biggie in the Paul McCartney Auditorium. More details, obviously, as I get them, which may be soon or may – being a lowly ASM – be a while.

Today we’ve had a “Production Breakfast” that didn’t have any food (believe me, students aren’t fans of false advertising) to meet the 3rd year students who will be our heads of department on the shows we’ve been visiting, as well as a full TPDT meeting that takes place for all years of the Technical and Design courses at lunchtime on a Monday for anyone to call for help with any of their projects.

This afternoon was Essential Stage Management – a course that will doubtless be invaluable as it runs alongside our first placements within the SM teams – which was basically just an intro for this week and will become more detailed. We do, however, have our first deadline for a piece of written work, although strangely it won’t actually be the soonest deadline. Go figure.

All day, though, my thoughts have been with Jess, who is still struggling. LLTGL have been working really hard on Twitter and the web all day to raise as much awareness as possible, including their Chair Emily hitting GMTV this morning to plead people to help. There’s now a large number of celebrities supporting her and tweeting about her, but every single person who signs on the organ donor register could potentially save her life.

If you’ve not signed up yet, do so now, here, and if you have then make it your mission to talk to at least one person every day this week about organ donation, Jess and how to sign up. If you are on Twitter, don’t forget to add #savejess to any and all of your tweets this week so we can get #savejess into the trending topics list and raise the profile even higher.

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.

The Top 20 things I’ve learned this week, in no particular order:

1) Liverpool has lots of pubs and lot of shops.
2) Drinking as a student is really cheap
3) Cheap drinks are remarkably dangerous.
4) Having a friend who works in a £1-a-shot tequila bar is good
5) Asking her to choose your shot of tequila isn’t
6) Chilli tequila is bad.
7) Banksy graffitti’d Liverpool and – remakrably – didn’t get in as much trouble as the bloke I saw doing it in the town centre the other night.
8) There’s a statue of Billy Fury by the docks.
9) The locals for some reason think he’s called Billy Furry.
10) I don’t look very good in a dress.
11) Cold showers are quite rubbish after 6 straight days of them.
12) LIPA is the coolest school in the whole entire world ever and I have no idea why anyone would go anywhere else.
13) School-leavers this year think “retro” is something from the late 90’s.
14) 3rd Years think that Steps, Five and Cotton Eye Joe are all from the 80’s.
15) All my friends live together 20 minutes away from where I live by myself.
16) My timetable is really, really harsh.
17) It’s not as bad as it would have been if I was a designer.
18) Postal workers suck.
19) Pot Noodles taste much worse than Super Noodles.

and finally and probably most importantly:

20) I’m going to LOVE IT 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.