National Transplant Week 2015

Huge thank you to CF/Aware who asked for my story for this years National Transplant Week. This is my story, remembering that very scary yet mind blowingly amazing episode of my life 2 and a half years ago!

I hope you all have signed up to the Organ Donor register, it's so quick yet can and will make such a huge difference to not only 8 people's lives, but their friends and families too. Fucking do it.

https://www.organdonation.nhs.uk/register-to-donate/

Here is CF/Aware's post, with a link to the page here
(Give them a follow, they do a bloody fantastic job. Facts, articles, stories, everything you need to be cystic fibrosis aware.
Twitter: @cfaware  Facebook page here )

Organ donation week this week has been tremendously successful at highlighting the life changing experiences people have had thanks to organ donors. A lot has been said about people with Cystic Fibrosis needing lung transplants, however CF doesn't just affect the lungs and people may need other organ transplants.

This is Laura's story...

"First some stats for you: CF liver disease can affect up to 40% of children with CF, with that rate dropping as age increases - it's unlikely you develop CF liver disease as an adult. Of the people with liver disease, 8% will get scarring, or cirrhosis. Of this, 3% will need a transplant.
CF liver disease is caused by thick bile (just like thick mucus in the lungs) that eventually block the bile ducts and cause the liver to harden and scar, again just like what happens in the lungs. A scarred liver doesn't work anymore, and when this happens a transplant is the only way to survive. Cystic fibrosis liver disease is the third most frequent cause of death in CF after respiratory and transplantation complications and accounts for 2.3% of all mortality."

“I was the very lucky recipient of a new liver, pancreas and small bowel (called a multivisceral transplant) on the 23rd January 2013, when I was 23. I was put on the waiting list 9 months earlier, after a series of long and extensive testing that revealed what we all dreaded – because of CF liver disease my liver was failing and now end stage. A series of frightening bleeds from my oesophagus a few years earlier first hinted that something was wrong, an indication that the pressure within my portal system was getting increasingly high; blood wasn’t going through my liver because it was becoming so scarred, so instead was being re-directed into my (growing) spleen, and bursting out into my stomach, oesophagus and intestines, which causes life threatening bleeds, the highest cause of death in CF liver disease.

I also had CF related diabetes, and controlling it was impossible because the liver was negatively affecting my pancreas. I frequently would go unconscious because of low blood sugars I couldn’t predict – one time this happened a week before my final exams at uni, also getting serious concussion from the fall. I would frequently be rushed to hospital to try and revive me before my brain shut down.

I was initially seen under Kings College Hospital, but they refused to transplant me as they thought the operation would be too risky; “It’s basically playing Russian Roulette with you” the consultant said, ever so nonchalant. A 1 in 5 chance of dying on the table. A scary statistic, but to me better than a 5 in 5 chance of dying, drowning in my own blood, within 2 years. Thankfully, the doctors at Addenbrookes in Cambridge came to my rescue and ultimately saved my life as they decided the only thing to do was transplant my liver, and my pancreas too as there was no guarantee my pancreas would return to normal with a new liver. To make this operation easier, they decided to replace my entire middle, like a flip book (see picture).

9 months later I was called to Addenbrookes Hospital for my transplant as organs of the right blood type and size had become available, and a family at a time of great sadness had done an incredible thing and let their daughter donate her organs. After 2 operations (the main transplant lasting 12 hours), rejection, dialysis, plasmapheresis, clots, drugs with nightmarish side effects, a lot of tears, pain and trying to recover with lungs that had plummeted down to 15% of their capacity, after 4 months in hospital my body was finally (and slowly) getting used to my amazing new additions.
It was an extremely rough ride, and not being able to breathe properly throughout was terrifying. I was in in and out of hospital for the rest of the year, as my lungs just couldn’t deal with what an onslaught they had been subjected to. From 80% capacity before the transplant they had dropped to 15% - I was on oxygen for 4 months, and didn’t have enough puff to even blow my nose. One lung had collapsed and had hardened to a cement-like consistency, which I am still now in the process of fixing.

Organ donation has not just saved my life, but also vastly improved the quality of my life. I am now able to gain weight to stay healthy, can process medication effectively, am not dead, don’t look like I’m 8 months pregnant, and a massive silver lining is that my lungs are steadily improving too. They are now at 90% capacity, the best they’ve ever been.

The amazing thing is that my donor also saved another 2 lives that day – her heart and lungs were also transplanted, and her kidneys too. To me she’ll always be my hero, as I couldn’t have this amazing and fulfilling life I’m living now if it wasn’t for her and her selfless act of signing up to the organ donor register. It’s crazy how such a small action can save up to eight lives. I definitely think that’s 2 minutes well spent. What’re you waiting for, just bloody google it and do it!”

Huge thanks to Laura for allowing us to share her amazing transplant story for ‪#‎NationalTransplantWeek2015‬, you can find her blog athttp://ludicrousbunglings.blogspot.co.uk/

Panda Sex and Posaconazole

Just because it's my favourite card

I've just had my 2 and a half year anniversary since my transplant! Hell yeah.

I've tried to stop thinking about how much (or how little) I have achieved in that time, to stop comparing my journey to other people's, as it's utterly pointless. I'm happy about how much i've achieved, also annoyed that I haven't done more, but I guess most people are like that, always hoping that they could've done more with their time, to squeeze every second out of every year, when in reality it isn't always possible. I love downtime as much as I love exciting adventures, and I guess looking back i've had a mix that has suited my health well.

I thrive on being active - the times i've been working i've been extremely well and have felt fantasic and full of energy, but that energy is finite, and after a few months I need to rest. I've been kicking myself a bit for not having found a full time job yet, but realistically I don't think my body is up to full time, even now. I'm wondering if i'll ever have the energy to work full time for a long period of time, because after 3 months if I don't stop, I know i'll need IV's. So after 3 monhs I stop, rest, and start again. And i've been doing really well with that.

I've been off work now for a couple of months, now applying for jobs and paid internships again, mostly in Literary agencies which I am super excited about! I haven't been completely idle though, i've actually had a very exciting couple of months. At the end of my last stint at Penguin, I asked my first boss, Joel, who is head editor of Penguin General, if he thought this book I had created had potential, and if I should consider doing something with it.
The book is a DIY Poetry book - a sticker book to help create your own poems, like fridge poetry meets Wreck This Journal. I made it at Chelsea Art School, and it has been a part of my household for ages, with visitors and friends coming round and writing poems using my book.
Joel loved it, and put me in touch with some publishers who may be interested, including the poetry guy at Penguin.
The two publishers I met with both loved it too, asked me to expand it, and at this moment in time I now have been made a potential offer, and am just waiting for feedback on how we could physically create this. It's incredibly exciting, and am hoping this may actually be something that comes to fruition in the near future!

My health has been rather up and down - I always struggle in the summer - my puffers don't seem to like heat or humidity or pollen, which the english summer seems to throw at them in buckets. I've been very tight and sticky, with my nights taken up by coughing and tossing. My lung function (Fev1 ie indicator of tightness) was down at last clinic, but i'm not too concerned as autumn is only round the corner *is shot for mentioning the A word*. My liver is great,  however they have found a blood clot in one of the arteries they made to join up my new organs (booooo!). Addenbrookes started me on aspirin, contemplated warfarin and settled on heparin, which I now inject once a day.
The heparin however made it so that my lady time of the month didn't stop when it was supposed to - altogether it's lasted just over 6 weeks now. As well as feeling absolutely drained / dead, I was unbelievably pissed off, as we've spent a year trying to steady my cycle to once a month rather than twice a month / 3 times a month / whenever it decided to show up, which now has been completely shot to pieces. A weekend trip to A+E after the GP was utterly clueless of what course of action would be good resulted in finally getting booked into the irregular menstrual clinic, and a top of iron and fluids to tackle my tiredness and dodgy kidneys. The gynae time I saw on the ward were still a little stumped, as the course of action they would normally take (to stop or regulate periods) were completely out the picture as they would make my clot worse. Hopefully the specialist consultant i'm due to see will have an idea. They started me on a hormone (progesterone) for now which should help, though they agreed with my concern that the tablet is more of a band aid that a solution. It'll be interesting to see what the Consultant of Women's Silly Bits says.

In (slightly) better news, my anti-fungal tablet Voriconazole, which i've been trying to get changed for the fucking longest time, as finally been switched to the slightly more expensive posaconazole. Vori has given me a host of horrible side effects, including the actual inability to step outside in the summer due to burning my skin off (almost) and bursting into flames, even with factor 50. Being on immuno-supressants increases your risk of skin cancer, so I was very keen this summer not have that problem (after all this she dies of cancer?). Vori is also the root of my chubby steroid looking face, which even though is not a cause for change in the eyes of the Brompton, is a huge concern of mine. Apparently when vori as taken with symbicort inhaler, the two drugs create a steroid effect - mainly the accumulation of fatty deposits in the face and body.
Thanks to the amazeballs Su Madge, I have now been on posaconazole for a week, and my chipmunk cheeks have already started shrinking (my stocks!), and i've been out enjoying the summer without transforming into a nicely done lobster. I'm absolutely over the moon! I think the tablets are making me feel sleepy, but the dose results will come back soon, i'm hoping they may just need lowering.

Medical palaver aside, i've had a fantastic summer so far, full of fun and laughs and wine, outings and films and lie ins and Netflix and pizza. I've also started Tai Chi, as part of a clinical trial through the Brompton. I had my first lesson yesterday, with an into tai chi and why they are doing the trial. My instructor was telling me about his excitement that he's finally able to try some homeopathic medicine in the NHS, as it is something very overlooked. The emphasis is mainly on feeling at one with yourself and surroundings, with breathing and posture being a huge element. Anything to do with deep tummy (not upper airways) breathing and creating a solid posture (opening, relaxing) can only be a great thing. It is definitely something I feel hospitals don't focus enough on, physios especially - posture is a hugely important in how easy it is to breathe, and CF seems to breed bad posture, which is so detrimental to lung function and day to day activity. I hope this Tai Chi may help break that cycle of bad posture, and in turn keep my lungs open and relaxed. I can't wait until my lesson next week! (I guess that's still quite medical for my non-medical section! As is my life...)

TAI CHI FREE TOP! PANDAS!!

Hope everyone who reads is having a lovely summer so far too, and isn't too depressed by the size of queue to get into the Nat History museum or the amount of tourists on the tube.

SOUTH KEN DEATH

SUMMER NIGHTS

SNOWBOOTS

Let's Talk About Texts Baby

All day i've been wanting to go read a book. Hell, all year i've been wanting to read a book. And it always goes this way:

I pick a book.

I read a few pages.

I check my phone.

I check facebook.

I scroll facebook.

I read articles.

I send an article to a mate via messenger

We chat.                                                                                                                        I check Twitter. 

I scroll Twitter.

I read articles.

I retweet.

I reply to whatsapp messages.

I start a whole new conversation on whatsapp.

Still chatting...

Still chatting on whatsapp...

Scroll Instagram

Decide to post a picture

Spend ages deciding on a filter.

Chatting...

Post picture.

Like a few pictures on Instgram

Still on whatsapp

Back to facebook for a scroll of exactly the same things ive just scrolled through.

Etc

Etc

Etc

A week later I realise i'm still only 3 pages into my book. It's shocking.

I have the shortest attention span. And it's constantly getting shorter. Hell, I even watched the end of my Orange is the New Black episode in the middle of writing that. And this is even a distraction from going to read my book. I got my tea, sat down, read one page and thought "I should update my blog. Hang on, i'm procrastinating. Why can't I focus on one thing. I should write a blog about that.

* 3 mins pass  *

This is going well, but let me just see if Piper and Alex are going to screw in the library first etc"

I wrote a blog a few months back about my reading wish list, and it's fair to say i've hardly progressed with it. I don't even have an excuse. I just can't seem to be able to sit still long enough, to shut the mundanity of other peoples lives out of my head, and explore a world better than this one - especially when all I read on facebook is how cute someone's new baby is or ridiculous articles about race or Tinder or pictures of someone's new shit tattoo. 

Am I really filling my spare, precious moments with egotistical bullshit coming from people I don't know or even care about anymore? And am I really prioritising this over reading, or painting, or listening to podcasts? (I've just discovered podcasts, aren't they great!) And more importantly, is it this mundane scrolling the very reason why mundane scrolling is all I do? Is it ruining my attention span each time, so that the next time, it is even harder to stop? I have noticed it - the more distractions, the easier it is to not stick to something. Why would we when we have 50 apps on our phones offering a multitude of fun and variety at any given point of the day, there in case whatever we're doing starts to use too many brain cells. Inside our pocket is a portable distraction device, we never need to be bored again. Scroll, flick, switch app, and repeat. 

But i'm so bored. I'm so bored that this is what I do when I have a moment to myself. I'm bored that people whip out their phones when conversation runs dry. Or when theres a hard task to finish, "but ah let me just check my whatsapps first." I can't stick to one thing anymore. It feels like a physical impossibility. And I blame my smartphone. The scariest thing is that I hardly realise i'm doing it, it's like a fully fledged habit. Automatically, i reach for the phone, and I scroll. 

I've found its not just hobbies technology is ruining. 

Platonic Relationships

There are so may ways of communicating with people these days. 

Whatsapp

Facebook

Facebook messenger

Twitter

Viber

Snapchat

etc

Oh and I forgot one! Telephone. As in a call. No? Anyway. 

All these ways, but sometimes I feel further away than ever. In theory I would think that with so many different forms of communication it's so much easier to say how you feel. But it seems our messages get diluted. They're too short, too quick, too flippant. Too easy. I can text for days, but meeting up with a mate, or speaking on the phone - fuck, even writing a letter! is unbelievably more meaningful. It puts to shame all the throwaway notes that whizz around all day. People say communication these days is great, some say it's lost all heart. I don't know. I just know that nothing beats the old fashioned ways of getting together - except of course facetime and skype, they're bloody genius!

Romantic relationships

I've been on tinder for a while. I think Tinder sums up everything technology embodies today - its fast, its accessible, it's flippant. It's not time consuming, you don't invest emotionally. It's throw away. You chat, you don't like someone, you delete them. You chat, you like someone, you meet up, you delete them. And that's great, if you're looking for some cheap thrills. But what isn't OK is that it seems to have given men the OK that women are throw away. I'm not going to be sexist, women I know too do exactly the same, but this is my experience. 

Now, to me, dating is super weird. I don't like the idea that men pay for everything on a date, and choose the places, and that there needs to be flowers and taxis home. That's not my thing (I like equality, down to earth fun, getting to know someone, not how much they can wow you with their wallet.) However, it seems that the first scenario isn't even an option anymore. I've gone on quite a few Tinder dates (cough 20), and not one has taken me out, payed for a meal, a cinema, drinks and offered to get me a taxi home at 1am. I always offer to go half, and every single man has accepted. I'm not begrudging, but jesus fuck. That isn't what used to happen, and this is not how you make someone feel special. 

Don't get me wrong, dating is expensive, but you just know that they're not poor - they're not paying because they don't want to invest in anything more than they have to on this date as they're just 'window shopping', and maybe they'll save that 20 quid to take that other slightly more attractive but not quite as funny girl (you know, the one with the bum shot) out tomorrow night (that he's texting when you go to the loo*). They're dating Instagram when they realise they want to switch over to Facebook because you know they've been with instagram for a few hours now and slightly bored, and woah so much exciting stuff MUST be happening over on FB... 

*(may have done that myself)

I'm sure if I ever talked to my granny about dating she would say "in my day the men did all the shit they had bare money and even if they didnt they would save up so they could treat this lovely girl to a banging night out, to show that he respected and cared about her. They would do that for 5 years then he'd ask if it was ok to snog her"*. And I would be like "gran yeah, these dudes now haven't got money because they spend it on extortionate house-share rents and getting wasted down the pub to try and bang chicks, and even if they do they're stingy fucks and don't want to waste money on a girl whose bum is slightly too small and waist to thigh ratio is a little bit off - they'll wait for that other chick who might have better tits. But he'll totally wanna bang anyway and never have to get my digits**". And bingo. Fast, throwaway. 

*may not go quite like that

** also may not go quite like that

My long winded point is, thats not right. Us girls are going to get issues (more issues) that we're commodities, that its ok for men to window shop, try women out for size and if their blow jobs are a bit off, (or really fucking ace, still) never talk to them again. I have mates who have been deeply hurt by this, treated like a throwaway blow up doll (even if the blow up doll made great food and her movie choice was on point, and didn't even use her special blow up doll parts). Tinder has destroyed any sort of chase, destroyed any semblance of 'getting to know someone'  - if we don't like, we swipe on to the next straight away. If we're bored, we un-match. done. We're just not programmed to wait around any longer. There's always something more exciting, whether it be the busty blonde, or the food snaps on instagram. (Guys, you might be missing some food pictures right now!)

(OMG, don't even get me started on sexting, or all those sexy ex flings still sending you naked snapchats (and you, back) while your girlfriend is reading Judy Blume in the bath (maybe he even popped over to see her, I mean, 'gone to the pub with the blokes, babe' ) - technology is ruining romance. Theres actually a great book about all this its called Modern Romance by Aziz Ansari - it's not out yet but deffo keep an eye out! WAIT There is a PERFECT analogy to everything i've been saying thus far about relationships. It's pure genius. THIS my readers is the jam analogy: 

Don’t you see what’s happening to us? There’s just too much jam out there. If you go on a date with a certain jam, you can’t even focus, ‘cause as soon as you go to the bathroom, three other jams have texted you. You go online, you see more jam there. You put in filters to find the perfect jam. There are iphone apps that literally tell you if there is jam nearby that wants to get eaten at that particular moment! Pg 132

THAT is what is wrong with all this technology, and the copious amounts of choice that comes with it. There's just too much jam. )

I deleted my facebook app yesterday, and Tinder too. I want to try and reclaim some time, time that I can use to read again, write and paint my walls. Also wash my dishes and hoover my stairs, because even household chores come second to aimless scrolling! I know that my life will be substantially more enriched by quality time - reading books not status updates, and going to the pub (and meeting new people!) rather than left-swiping men i'm judging by their hair cut for 2 hours. We have, and I certainly have, become utterly saturated with this feed of information that really has no bearing on my life. It's time I dropped my smartphone, undo the surgical stitches to my hand, and free myself into a world of free thinking, freedom and creativity. I don't think this will happen overnight (at all!), but you know, apparently admitting you have a problem is the first step, and now its just about getting into a super cool phone-free habit. Viva la regressive future.

I'll leave you with exhibit A, a shining example that I received last week of how technology can help guys be absolute twats.

Perspective

I was scrolling through my Instagram photos earlier (Is this what we're slowly becoming programmed to do with our spare time, scroll?) when I came across the photo of my friend and ex housemate Ren, holding a sparkler as we celebrated my organs' (LivII, PancII and Duoduo) second birthday, which was back at the end of January.
I scrolled up again, and I was struck by how many wonderful and exciting things have happened to me since January 23rd this year, up until now. The exact same amount of time that in 2013, I was in hospital. I was finally set free in mid May, and god was I pleased!

I'm not a very snap-happy person - I don't whip out my camera at every opportunity (I forget I have cool technology sometimes). But according to Instagram, this year since January, in short, I have:

Done 3 work experience placements at dreamjob Penguin
Had one proper job as Publicity assistant at Random House
Been on dates
Been to many incredible gigs
Painted guitars
Had a spiral staircase constructed in my house
Converted my loft
Been to exhibitions
Been to see films
Had my 26th birthday
Got a new mirror
Taken a silly amount of photos of the sky
Got a new flatmate
Got bare drunk
Laughed so many times
Had epic parties
Fallen in love (maybe)
Had bloody amazing times with my mates

Same time two years ago,

Sleep
Sleep
Cry
Sleep
Cough (can't cough, too sore!)
Cry
Sleep
Sleep
Cry
Try walk
Get poked by needles
""
""
""
Cry
Walk
Throw up
Sleep
Throw up
Get wheeled about in a wheelchair
Get Picc lines put in
Cry
Throw up
Cough
Sleep
Cry
(You get the idea. Repeat x6)


I basically was still lying in a hospital bed, and would only leave the confines of the Brompton hospital next week, after 4 incredibly long, incredibly hard, often incredibly upsetting months. Not weeks bitches, months. Not only did I have to recover from a transplant, and we've all seen so much over twitter and facebook about people's hard journeys leading up to, and post transplant. But I had shit lungs to deal with the whole time. I can't describe how hard this was. Anaesthesia bascially does what to the lungs what CF does - it thickens mucus, tightens airways, and stops your lungs clearing the gunk. The lungs basically shut down. I didn't wake up with perfect new lungs - I woke up with my old lungs, previously at 50%, now collapsed and consolidated, who had to fight the hardest they had fought just to keep up. Chest clearance was impossible due to the pain, and 2 months in my lungs were at 15%. Leaving the Brompton another 2 months after that, they were at 40%. It's been a long, slow road back up to 80%.

I'm so proud of the life i've been living in the same amount of time, from January to May, and how if it wasn't for that operation which yes, annoyingly took out a huge part of my life, I couldn't have done any of this. Hell, I wouldn't be here. My doctor said that by now, no doubt i'd have had a major internal bleed caused by the pressure on the portal system, and poof, I'd be gone. It's scary to think about, how ill I actually was.

I remember not really asking about what would happen if i didn't receive a new liver and it wasn't until after my operation, sometime last year, that my dad showed me a medical paper explaining how the bleeds I used to get (called variceal bleeds) would most definitely have killed me. (variceal bleeds are where blood vessels poke out of your oesophagus and then leak, or in end-stage cases, rupture, causing major internal, and unstoppable, bleeding. Dad then said how it would be like drowning, as blood rises up inside you. I went pretty white... I had had quite a few leaks, and as the liver gets more scarred, then greater the amount of pressure that builds up, and the greater the chance of a rupture (etc etc ew)).

But hello *waves*, this hasn't happened! I'm well, and filling my days with so much fun and so many laughs that all that upset seems like it's been totally worth it. I just do not know for the life of me how I stayed in hospital for 4 months. I was allowed home half way through, over my birthday weekend, while I was being transferred from Addenbrookes to the Brompton. (I remember that weekend - it was a weird experience, a real dichotomy of feelings. Obviously, I loved being home. Seeing my family, my cats, laying on a sofa, my own bed. But I couldn't walk. I had zero muscles, zero energy, I felt like Bambi, if Bambi also had one collapsed lung and one full of cement like gunk. I was scared to leave the house, as I felt like I would crumble. I remember sitting on the dining chairs was agony, as my poor little bum was so boney haha. As soon as I was in the brompton I felt like I had been swaddled in a warm blanket, and could concentrate on trying to breathe again, and could finally start being tube fed again, as I still wasn't eating). 3 courses of different antibiotics later, I was out!

Institutionalised Laura was not terribly fun once I was eventually set free, that (probably sunny) day in May. Life was definitely weird without a tea trolley in ones life. And 3 set meals a day. But like a break up, I got over that shit.

*dreams of tea trolley*

I do have a little regret about my greatly extended hospital stay. That I didn't take more pictures. And that I don't have a picture of me with an obscene amount of drips, lines and machines attached to me. That always freaks people out. It freaked mum out, thats why she didn't. But it wasn't a nice time, maybe it's best not to remember too clearly...

I'm going to work super hard so that next anniversary, i've accomplished even more, and filled my time with even more fun. More serendipidous moments. And more achievements. It just feels so unbelievably fucking awesome!

As I watch the bright stars shining, I

think a thought of the clef

of the universes and of the future

Walt Whitman

I like the dreams of the future better than the history of the past

Thomas Jefferson

L x

Parliament Hill, the fam. Looking out at the future that awaits!

Book Worms

Books land on my desk at work almost contantly. From biographies, to crime fiction, to novels to hardback non-fiction, a new title is always finding it's way into my hands - often passed straight on, though sometimes takes a short detour through my fingers as I flick through the pages, and read parts on my lunch break. Books also come home with me, like the book slut I am. Since September my book collection has multiplied like ravenous rabbits - my living room is now littered in paper backs, trade paperbacks, proofs and the allmighty hardback. I've pleaded with my dad to help construct more shelves, as right now they're finidng their way into any available space there is.

This hoard is both beautiful yet daunting - at the moment it's taking me on average half a year to finish a a book (I start one, start another, start another, realise I started two books, re-start the first one, re-start the second one a few weeks later, give up and pick a new one with a gorgeous cover.... it's a vicious cycle, and book love can be fickle.) I estimate, working at that rate, that I have a lifetime's worth of books to read. A long life too, and given i'm not expected to grow a grey hair, i'll aim for half.

This obsession / problem has pointed out some fascinating insights into how my brain works.

1) I'm obsessed with books
2) I never read books
3) I accumulate non-fiction
4) Mostly Philosopy
5) And books about space
6) And books with pretty covers
7) I want more Penguin Classics
8) When will they re-issue the original Penguin classics design?
9) I have a hoarding problem
10) I also hoard computer tabs

Number 2 is a lie - I do read books (probably more than most). I think relative to the size of my growing collection, I never read books.

At the moment I am reading:

I am Pilgrim by Terry Hayes - a fantastic crime novel - it's so gripping, intreguing, fast paced...

The Crystal World by JG Ballard - I've always loved Ballard, his descritions are transpotive in their dreamyness!

Penguin Little Black Classics - notable titles i've picked up recently are The Eve of St Agnes, I, Body, Grimm's Tales, The Dhammapada. (I tend to read these on the tube)

How to Start a Revolution, Lucy Ann Holmes - No more page three! Girl's got fire

Walden - Pandering to my love of all things utopian / dystopian - this is the Philosopher Thoreau's ideal community.

See what I mean? I've been juggling these guys for about a month now.




I really want to read  / add the list:

The Worm at the Core - Out later this year (I have a proof woooooo) investigting the role of death in life - mortality is a theme that always calls to me, whether it be through the Romantics, science or mythology - I just find it fascinating.

Mark Thompson's Space Traveller's Guide to the Galaxy - SPACE

Trainspotting, Irvine Welsh - Such a cult classic, and i'm sure the sense of achievment after you've grasped the lingo will be the best feeling, after air conditioning on a sweltering day.

God in Ruins, Kate Atkinson - So much hype round the office for Kate's new book

Disclaimer, Rennee Knight - Again, bare hype.

Chris Fowler's Bryant and May series (series- no!!) I was working at Chris' book launch and birthday party, and he is such a straight up guy!

Terry Pratchett's Discworld - I'm ashamed i've never read anthing of Terry's, but judging by the amount of love that we've recieved at work about him, I feel I won't be let down.


(I'll get back to you in 2 years with my progress...)



I don't know how to escape from this rut? I need to learn to stick with one, through thick and thin.
I blame my iphone for this severe decline is concentration.
It's destroying my brain.


I'm off to hunt for a new job, as my temporary job at Transworld is finishing on Friday. It's been great experience, the publicity dept is dreamy. I'm going to jump in and look for marketing jobs, because after all this time flitting between departments, buildings, companies I have finally realised that marketing is the area of publishng i'd absoloutly LOVE to work in. I've sent off some applications, so here's hoping something comes through...!


If you have any book recommndations please please let me know - that list can definitely afford to be a bit bigger...! Now time to grab a book and eat ice lollies in the sun!

Watching the rain

Ticking away the moments that make up a dull day

Fritter and waste the hours in an off-hand way

Kicking around on a piece of ground in your home town

Waiting for someone or something to show you the way

Tired of lying in the sunshine staying home to watch the rain

You are young and life is long and there is time to kill today

And then one day you find ten years have got behind you

No one told you when to run, you missed the starting gun

And you run and you run to catch up with the sun but it's sinking

Racing around to come up behind you again

The sun is the same in a relative way, but you're older

Shorter of breath and one day closer to death

Every year is getting shorter, never seem to find the time

Plans that either come to naught or half a page of scribbled lines

Hanging on in quiet desperation is the English way

The time is gone, the song is over, thought I'd something more to say

Home, home again

I like to be here when I can

When I come home cold and tired

It's good to warm my bones beside the fire

Far away, across the field

The tolling of the iron bell

Calls the faithful to their knees

To hear the softly spoken magic spell

It's slightly weird that I start with this, as it is not in any way indicitive of my recent mind state, only this weekend it is all i've been thinking about, all i've been feeling.

Time. I turn 26 in under 2 weeks. 26 is nearly 30. 30! I don't like ageing, I don't like birthdays. Time goes too fast.

This weekend i've been exhausted - utterly so, from my first week at my new proper job as a publicity assistant at Transworld, Random House. I'm loving it so far, i'm so excited to have a real job in publishing! Yet friday came and I could hardly drag myself out of bed, it felt like every skin molecule was grasping onto my sheets, pleading with me not to move, to succumb to my tiredness and rest. Of course I went in, but this weekend I have just been frittering and wasting my time, in a daze, though through drooping eyelids desperately craving a night out, a dance, a drink, something fun and maybe scandalous. It'l like an inverted R Kelly sort of said: my body is telling me no, but my mind, my mind's telling me yeeesssssss. 

I know I need to rest, to look after this cough that seems to be creeping in. I've started cipro, and my string of late weekends, early mornings and full working days have certainly been slowly taking their toll. 

It's just when I have days swamped in nothingness is when i'm so aware that I will wake up, Like Pink Floyd say, and realise a week, a year, 10 years have passed and there were so many things I wanted to do. I find it hard to sit still now, I find it hard to just watch the sun when I want to be out chasing it; staying awake until it risies again in that wonderful morning glow that makes life beyond beautiful. 

It's also because i've been so well. I just blew by best lung function ever - 70 and 90%. I can cope with so many things now that I know a year ago would have been ludicrous to even image me doing. Being healthy is addictive - the energy is contagious, and I feel like i'm wasting it. Finding a balance is hard, between making the most of the health i've been given, and maintaining it. 

Time by Pink Floyd is one of my all time favourite songs; even before I knew the lyrics it has one of those transporting qualities. And when you read it, it does even more so. A song so perfect in it's representation of the transience of life, and how it can all be over before you know it. But it also shows the beauty in small moments, small seemingly insignificant moments, which make up your worldly experience. Maybe sitting here, writing my blog, reading my novel is something to be cherished, especially when i'm bathed in fairy lights, and have a trusty can of fanta beside me. Maybe I shouldn't always be chasing the sun, and these half a pages of scribbled lines are certainly always enjoyable to write.

Looking Back - 2014!

Happy (belated) New year! Before I launch into what this year has held for me so far (surprisingly eventful actually...!), I think i'll do a little re-cap of 2014.

January 2014 was probably the shittest start to any year i've had for s long time. Boxing day my blood sugars were obscenely high, and escalating. After a few days in the Brompton, then getting shipped up to the experts in Addenbrookes, I was told on the 2nd of Jan that my poor new pancreas was rejecting, and that i'd need to start insulin again. It was rejecting slowly, meaning that i'll gradually need to increase my insulin dose as more and more of my islet cells give up the ghost. I think I sobbed for a good 3 days, was mighty pissed off, but then realised I'd had 9 months of injection free bliss, and injecting tiny amounts will be OK. *breathe* It's OK. What absolutely fascinated me however, is that now I don't have CF related diabetes, like before, but type 1! 

In march, I moved into my very own house! This move, still, fills me with so much happiness, it utterly transformed my life. My health improved, my happiness, my independence flourished, and I was just the happiest person in west london. Finally, after a year and a bit of constant coughs, colds, tightness, infection, all these niggles vanished like a ghost, and I felt like a new woman. My first housemates helped make my house a home, and also managed to bring my floundering weight up over the 50kg mark with their beyond delicious meals they would cook lovingly for me. With this weight, my health got even better, so much so a short while later I started to look for jobs - what would be my first ever proper job!

In April I landed an internship role (with the thanks to the always wonderful Sharon Brennan) at a PR company in central london. Initially I was scared about the sudden drop into long hours, lack of lie-ins, and what I knew would use a crazy amount of energy. However what I found with this working life was quite the opposite. Since I started working that april, my energy flourished, I gained muscles, I gained an appetite. Starting work was the best move, and I haven't looked back since. I was so taken aback that my energy levels would rise and not drop, and that the early starts, instead of exhausting me, would invigorate me. When I changed to 5 days a week from 3, I could feel my body bending under the weight of relentlessness, and after 5 months, my break was very very welcome. I then started at Penguin Publishers, which I still am at, and absolutely loving it. I'd love to stay in publishing.

I also managed 2 festivals that summer! I somehow survived, though looking forward I know that this summer I'll have to escape somewhere very north to avoid the sunshine. The mix of immuno supressents and my anti-fungal medication made me burn at a ridiculous rate, which thanks to said immunos, will increasingly increase my risk of cancer, which obv wouldn't be ideal... I'm thinking of re-locating to the lovely, cold, rainy and cloudy Scotland coming this May - September.

That autumn I had a series of odd leg problems - huge blisters, rashes and cuts that turned very weird. In the end it turned out I just got an insect bite, which as I don't have an immune system, caused havoc with infection and my body's reaction to it. Beginning of Novemeber I got shingles, which resuted in my first hospital admission of the year - and first ever go at home IV's! It made my chest have a it of a hissy fit, which, both the shingles and the chest infection, ive just about recovered from now. I'm still weaning off the shingles nerve pain-killers, as I accidentally stopped them immediately after a two week course and found myself with the most awful withdrawal symtoms. I say accidentally, but the Brompton seeminly forgot to tell me not to go cold turkey as you begin to act and feel like a drug addict coming off crack. I couldn't sleep (AT ALL. For 3 whole days.), was throwing up, feverish, dizzy, had the shits, and couldn't eat. I suddenly realised one nht that the only thing that had changed was me stopping the blasted pregabalin, so made an emergency trip to the Brompton hosp one saturday evening. I sometimes still get an itch actoss my tummy, however all evidence and tiredness has completely disappeared.  I'm starting to realise just how crap having no immune system is.

Just before the shingles episode we went to Riga, Latvia in October - my first trip abroad since 2011! It was gorgeous (perfectly cold - no chance of sunburn!), and lovely seeing my brother, who was studying there for a term. It was probably in part why I got shingles, I found it quite exhausting.

Christmas was the first Christmas without my brother, as he stayed in Riga. Just me mum and dad! It was weird not being a 4. And for the first time ever had a fake tree - real trees carry fungus and spores and nasty things for my lungs, so we realised we definitely should. The whole Christmas season was however brilliant - I had such fun with my mates too - parties, gigs, gatherings, reunions. It was a fantastic end to a fantastic year, full of such love fun and happiness. My dad also turned 60! Woo daddy!

And some random photo's, just... because.

I have good #friends

I decided pink hair is the one in 2014

I think ive lived off Florence Pizza, and will continue to do so

Fucking sublime views from my local park

Dad has been a superhero, fixing and transforming my house!

Highlight of the year HAS to be when a stranger bought me a cheeseburger.

I dressed up as a fish and danced on stage for a band one day, as you do.

How do you like yours?

And tomorrow, maybe not the next but probably the day after...

Dad love cat, cat love dad, I jealous cats not hugging me

I love views, and this one was ace. LOVE LDN

I tried Tinder, but realised pubs were better.

Got arty.

Uh, uhmayzing

If you've reached this far and put up with the selfies, i'll send you a present.
Wishing you all a very very fantastic 2015!

L x