In Search Of Lost Time

 What was once measured in ordinary intervals - morning light, a hurried meal, a passing conversation - is now stretched, broken, or stolen altogether. To live with chronic illnesses is to inhabit a different chronology, one that does not run parallel to the world's clock but winds inward, folding back on itself, darting suddenly sideways… eluding capture. Days blur into each other with their quiet rituals of medication, fatigue, treatment; infections and viruses blur them altogether. Moments slip away, half-lived or never lived at all.

I find myself perpetually searching for the time my conditions have taken. The hours when the body refuses to rise, the weeks tethered to a dialysis machine, the years altered in their trajectory by illness, surgery, or recovery. 

There are triggers - places, songs, fragments of conversations, that call up visions of another self - a life imagined, sometimes half-begun. It is not simply nostalgia, it’s an awareness that time itself has become fragile, and easily misplaced. In those split seconds of remembering or imagining it feels like a sinking… a mourning for a parallel life that from the moment I was born, continued on another path. I grieve those paths: a never-ending series of ‘sliding door’ moments at the time of each missed party or life-changing diagnosis.

I am always chasing after what might have been, gathering the scattered threads of my hours, and trying to weave meaning from the fragments.

Yet, in these searches for lost moments, both big and small, comes discovery. 

To be forced out of the world’s tempo is to notice its subtler magic… A quiet afternoon watching the sun from my garden or meandering slowly on the seafront reveals textures I might have otherwise rushed past; a single intact hour, free from lethargy, gleams with a brilliance that ordinary health might never grant. 

I can spend a stretched hour watching the sunlight, or moonlight, glint off the rippling waves; watch pale oranges turn electric pink as the sky erupts into a fleeting moment of colour and hope. I hold on tightly to these. 

There’s a strange and serene peace in the slowing of time; the world rushes past on its many endeavours: high octane, high blood pressure, fast pulse. Mine however has slowed, I’ve found a secret club in amongst the frenzy. My body has found a new quiet rhythm with the waves. 

I live in search of lost time. Not only to mourn it, but to reimagine it; to render absence into presence through the act of noticing it, and embracing it all. 

April 2026 

A return; and the biggest body chaos of all

Almost a year ago to the day I had the mother of body dramalamas. I've had many body meltdowns in my life - but this was a whole new level of cHaOs 

On May Day 2025, (while Hastings danced and revelled at Jack in the Green), my transplanted pancreas and duodenum (small bowel) decided to detach themselves from my body, die, go necrotic, and spew infection and bowel contents into my abdomen. I was ambulanced from Hastings to Cambridge (| remember the blurry blue lights flashing across the van's ceiling getting fainter and fainter as sepsis took hold), where I underwent three big emergency operations. They had to remove my now dead organs (a blood clot, they suspect), get all the infection out, then re-attach and re-design my digestive system.

I was kept unconscious between operations, where I spent almost 6 weeks trapped on another planet of intense, terrifying and upsetting delirium: scenarios that feel so real, totally inescapable.

Between tripping out, I just remember pain, tears, and lots of enthusiastic physios, often merging with the false and scary reality inside my head. 

I ballooned up to a million times my size, all fluid from the drips and IVs and magic potions working hard to keep me alive (so many machines.), the fluid unable to be dialysised out of me for nearly 6 weeks because my heart wasn't strong enough to cope. (I still needed dialysis throughout all this... they opened me up three times, could've squished a new lil kidney in for me no? 😇) I had to wear gigantic maxi incontinence pads on my wrists for weeks as every few seconds water droplets would drip out of my many many IV puncture wounds. I still have scars from where the dampness mixed with the dressings would tear my skin. 

I spent 7 weeks in intensive care, a fever dream.

Two weeks then on the main ward before going to live with and be cared for by my parents for another two months near the hospital. I started a new dialysis centre (no rest for the wicked…!)  and

began the long journey of re-learning to walk again

It was A LOT, pals. My open wounds have become new scars, my muscles are returning slowly, St Leonards hills are both my saviour and my nemesis. I've always known life to be short, a silver lining of growing up with a life limiting condition, but l've never had an experience where so clearly afterwards have I felt the shimmering fragility - both terrifying and beautiful - of life, and the need to really search for joy whenever and wherever I can.

Now home, I stare out to sea and breathe in cold air to the bottom of my lungs, and hope so much this feeling stays with me. I was told if I hadn't gone to A&E when I did, if | left it until the morning, I wouldn't have been well enough to have the operations.I wouldn't be here right now. I'm so thankful to my parents, how insanely lucky l am to receive this love and care from them. They're amazing. I thank our national fucking health system, the best thing we have: my nurses and docs and surgeons and so many many more who make up a team - everyone it takes to bring someone back to life from the brink and enable them to get home, live, hug their cat, and scream their soul out across moody waves. Addenbrookes is truly a fantastic place, once again Frankenstein-ing me like the G's they are. Seek out joy my friends :)

'It Will Always be October'

Over halloween I escaped chilly London to an even more chilly and wintery Berlin. Crisp air, mist, sun, icy breath. The parties were hectic, the history of the city was captivating; I found myself pleading to the Norwegian Air gods to delay my flight, to have another week, at least another day in the city, where countless art galleries and museums went by unseen, and more £2 pints were calling to be drunk.

My prayers were indeed answered by thick fog descending over London, grounding flights in and out. I received that miracle text 4 hours before my flight home, the flight was cancelled. The others went ballistic, but there I was in the middle of this panic stricken whirlwind ("omg work tho") blissfully suspended in ecstatic disbelief. We had an extra 2 days; one day of culture, one day of absolutely nothing *cough drinking*. It was awesome.

I will return, to some still unseen art galleries and parks and museums, maybe next time when the sun peaks out from behind the low lying mist a little more frequently...!

Since the trip i've been obsessed with reading up about more of the history - especially post war Germany/ Berlin. I luckily (and pretty pleasantly) stumbled upon The Wall Jumper by Peter Schneider sorting books in Oxfam one day, and read it non-stop. It's a fantastic book - fiction is seamlessly blended with fact blended with history. Real life experiences of living in the DDR, crossing the wall, different lives, different experiences, different regimes, different psyches, suspending you in disbelief. It's just brilliant, i'd highly recommend it. I now find myself gravitating towards the German section of Daunt Books whenever I pass it, to see what other post war gems I can find. Here is an article by Ian McEwan about the book (also it's introduction in the Penguin Modern Classics version!) to give you a super good overview.

My first trip in a year, it was certainly a special one. Exhausted, drunken tears and achey feet would lead to midnight confessions and woody fireside hi-jinx, blurry magical nights to sobering days in the midst of such poignant history. The Bauhaus museum, Topography of Terror, DDR museum, the giant sized schnitzel and spatzle from a small restaurant in Shoneberg, the Alice in Wonderland themed bar, the fragments of brutal wall, 5am gardens draped in fairy lights and fires, and obviously the tiny kebab shop on Friedrichstrasse which fed us for the majority of the trip were a particular highlight, but the eerie view from the 37th floor of the Park Inn hotel took the crown. You all know i'm an absolute sucker for a magical view. Here's a small collection of photo's from my trip. As is usual for every holiday (and special occasion and event and outing in general) I wish I took more photos, but I never do. (I'm going to look back on my virtual picture album in years to come, and see exactly how my face has changed, but have no idea what I did between each selfie pout...) 

Autumnal Chills

I know i've said this before and I know i'll say it every year, I love autumn. Autumn is my second spring - a season of rejuvenation, awakening, and ironically because of the disgusting amount of spiders and their cobwebby detritus littering my room, clearing the cobwebs and dusty boring corners of my life! I totally adore the crisp air and the changing colours and slightly pink nose turning weather. Of course twinned with the sunshine that seems so much more cosy and sparkly than any other season.

Exciting things always happen in autumn; last year I got my first internship at Penguin, which provided me with a year of working in publishing which I couldn't have loved more. This year, I just started my other dream job - I am now working at the Oxfam bookshop in Bloomsbury! Most exciting of all, I can now use a till *thumbs up*.  I've never worked in retail before, and am excited to finally be able to get some experience in that area, whilst working with books, and my colleagues all seem ace. It transpires my manager's best mate has CF, so from the start stipulated that any time off is totally cool, I don't have to carry a shit tonne of books up and down stairs, and just to yell if anything isn't right. He's basically the perfect manager. I wish more managers could so be accommodating and understanding! I'm so excited to be there. I am quite a happy bunny.

I've also just booked flights to Berlin for halloween! Never been, very very excited. There's a group of us going, including my other half (Laura has a second half! omg omg omg omg), and I can't wait to explore, party, drink, discover, pseudo-hipster (to hipster must be a verb. Must be), eat, smooch, dance and stumble around a whole new city; A pretty fucking brilliant one at that if all the stories are true. Every one says they never return home before 8am, and I'm sure one of the days i'll be almost able to manage that with a whole day of extensive preparation beforehand (ie SLEEP and copious amounts of coffee and pizza (sausage and sauerkraut?)). I can't wait to get me some german sausage.

Remember my pain from the previous post? Well after even more testing, A&E visits, stints on acute assessment ward, CT scans, ultrasounds, X-rays and last minute MRI scans, they found nothing. Nada. Zilch. Nufin. Mystery pain has yet again remained a mystery. The pain magically disappeared last weekend at Chelsea and westminster hospital after 2 bags of fluids and 3 lots of IV paracetamol (which is, by the way, the most amazing pain killer!), and hasn't returned since. Very odd! But thank god it's gone. It got so excruciating towards the end, it was utterly unbearable. The fact I had no idea what was causing such agony seemed to make it worse - the unknown is always the worst. I think I had 2 pains - chest pain (mucus plugging / infection) which was quite mild, and what seemed to be kidney pain (very low down at the back underneath my ribs). That was the pain that rendered moving, sneezing, laughing, hiccuping, yawning, getting out of bed, doing lung function and even walking an impossible task. But they suddenly both disappeared within a day of each other, and haven't come back. I get a slight twinge every now and then, especially turning over during the night, but the improvement is crazy. Bodies are weird and a bit of a mare. Mine is definitely in that 'can't live with it, can't live without it' category. Docs thought it might be residual shingles pain, but I knew it wasn't nerve pain, and I flat out refused to take the nerve pain killers they suggested. Last year (when I actually had shingles) it took me 4 months to wean off the painkillers, which also double up as anti-depressants / anti-neurosis / anti-seizure drugs. They're fucking hardcore pieces of crap with extreme withdrawal symptoms, and I'm not taking them on the off-chance (and without any evidence) that it may be viral related pain. I'm super thankful it went away by itself!

HOSP SNAPCHATs because hospital is boring

After finishing The Guest Cat, i've just started reading The Cyberiad by Stanislaw Lem. I popped into the sexy Daunt Books on Fulham road and worked my way over to the dystopian fiction shelf. I LOVE that they have a dystopian shelf! I knew Lem wrote Solaris which is a badass film, so before I attempt the novel I thought i'd start on his short stories. Love a good short story. I love short things. Mostly short things. This Daunt visit seems to be my new ritual when i'm working my way from Chelsea and West to the Brompton - a long lazy browse, a buy (I can't help it! I would like to buy the whole shop one day), and then a visit to the pretty Cafe Nero next door for a coffee and a munch and a read of my new purchase in the sun. I feel like i'm adulting very well these days.

I seem to have finally found a perfect balance of being busy at work and in day to day tasks, and chilling. I feel energised and very very content. My Tai Chi has nearly finished, but tomorrow I start a drumming course which is totally random but i'm bloody excited. I think drumming might be a good form of physio. Vibrations right? Vibrations rock!

Now i'm off to chill with Marcy and tea #veryadult 

Tinkling bells / rumbling chests

The last 6 weeks have been rather odd.

It started out with a pain under my right shoulder. I tend to sleep rather awkwardly, and my mattress isn't terribly brilliant, but as the pain slowly got worse, I started to think something else was up, rather than awkward back pain.

At clinic an X-ray showed lots of shading under my shoulder blade, and the answer I was hoping for was confirmed - a big blob of mucus, or a mucus plug was stuck in my lungs. The size of a sausage. At least this is fixable, I thought. Lots of physio, strong antibiotics and buckets of water was prescribed, and sure enough this strenuous regime worked, after a week the pain was gone!

But bugger my luck, a few days later I caught a cold and within a few days now only had the pain under my shoulder blade returned, but sharp pains were plaguing my entire lungs, every spot was sore. I would sneeze and my lungs would contract, held there by spasmed muscles and such a pain I couldn't move. The climax of each yawn was like an electric shock. Every part of my chest was littered with pain, and every twist, turn, move or breath would end in me releasing a small yell.

I would sit on the sofa, watching the TV my new housemate Alex dragged from his home in Sussex. People with eyes popping and burning skin on House would distract me from my own inflictions, and together with tea and my guest cat Marcy, who comes tinkling in whenever my back door is open, I wiled away a good week.

My dad would come over almost every day, and do percussion physio. Percussion was a type of physio I stopped when I was 11, but is the most magical form of chest clearance. Tilted down on a homemade wedge of cushions with my PEP acapella device firmly pressed between my lips (dad eventually constructed an epic tilt from a thin mattress in my loft) I would try make everything within my lungs rumble, and in the breaks try not to fall asleep in a daze of nostalgia and comfort. Of course the comfort would vanish as soon as we hit a tender part, and my breath would catch at the sharp pain in the tips of my lungs. 15 minutes of each side of my lungs, mucus galore, and even the addition of sander from dad's shed offering bursts of vibrations (and probably the best massage i've ever ever had), I was slowly but surely clearing the gunk from my lungs.  

Friday came, and once again I woke up and couldn't move. After all the hard work i felt back at that annoying square number one, and started to think maybe something else is at play. Pleurisy, pneumonia, inflammation, fluid in the lungs all went through my mind, so took myself down to A&E.

The doctor listened to my chest ("it's remarkably clear, nothing there"), and told me to go home. I asked for at least some bloods and an X-ray because fuck me if i'm heading all the way there and I don't even receive a bit of radiation for my time. An hour later and results were back.

CRP (Infection markers): 9 -super good
X-Ray: clear.
Kidneys: absolutely fucked.

My lungs were quickly forgotten, and I was admitted for fluids, an ECG (to check if the raised potassium level due to my off kidneys was hurting my heart), and countless more blood tests.

3 bags of fluids and a remarkably quiet and relaxed sleep up in the acute assessment ward later, everything, and I mean everythig, was back to normal. My CRP had dropped by another 3 points and was down to 6, my potassium was normal and my kidneys were totally bog standard normal.

Bit of a bloody mystery mate.

I was let home that afternoon, went back monday morning for some more bloods, hopped down the road to the brompton to check my lung function monday afternoon (mystery deepens: lung function is only 5% down from my best ever...) though have to go back to cheslea and west tomorrow morning as the kidney function is slightly elevated again.

It's all a little bonkers.

I've been taking a very normal dose of paracetamol for the diminishing lung pain, and back on the sofa with tea and a book and Marcy, the stolen cat.

As I was walking from one hospital to the other on monday afternoon, I stopped in Daunt Books on the Fulham road. Daunt books is one of my favourite bookshops, they organise half of their books by country, which endlessly fascinates me.

I picked up 3 books. Seneca, Crash by JG Ballard, and The Guest Cat, by Takashi Hiraide.

I had seen The Guest Cat before, and despite it being about a cat, surprisingly/ shockingly hadn't bought it.
But now I had Marcy, my stolen guest cat.
Even the cat's face on the cover, peeking up fro the bottom, looked like Marcy. So I had to buy the book.
Marcy started coming into my home about a year ago, as a teeny kitten. She would wander round, climbing the kitchen counter, disappearing into cupboards and sleeping on my bed. I like to think of her as almost mine, without the responsibility of clearing up her poop.
(Just a quick note, I found out a few weeks ago Marcy's real name is Kitty. Surely that's a crime against cats?)

"Gentle, thoughtful and subtly profound" said the guardian. Yep.

"Careful, elegant and lovely... unusually intimate, detailed and vivid", said the NY Times. Oooh, intimate. Yep.

"Lyrical and captivating....."..."Takashi Hiraide, the Japanse poet....so illumnating and achingly poetic..." The Huff post started to say... Bingo! A lyrical and captivating poet! I'm in.

So I bought it. I'm reading it, and i'd say it really is gentle, thoughtful and subtly profound, careful, elegant and lovely... unusually intimate, detai.... just, all of it. It's beautiful. (blissfully sighed Ludicrous Bunglings)

So far there is a couple, both work in publishing (I did that!), the man gets shingles (I had shingles!), and this kitten starts to come into their house (Marcy did that!). The chapters are 3 pages long (I love that!), and the imagery is stunning, like poetry (I love poetry!). Pretty perfect. I've been lounging on the sofa, wrapped in my blanket, reading the Guest Cat, drinking peppermint tea, classic fm in the background, and convincing myself i'm not old, all the while stroking my own guest cat as she wanders in, tail perked up in the air....

Today I woke up with no pain, downed a pint of water for my kindeys, and for lack of anything to do, started reading my book again. It's not a hard life these days. Just sometimes sore and always a very broke one.