More than this

Question: Who would want an enduring and meaningful friendship with their pharmacist? Answer: I do. Welcome to another interesting survival aspect of a life battling cystic fibrosis (CF)*

Tim and Jeet

Tim and Jeet

Jeet Patel, my pharmacist for the last twenty years retired recently. I’ve been royally supported by Jeet, his wife Chrishna and their staff Sally and Joyce. Before Jeet, I was looked after by his brother Raj for around five years. All-in-all, it equates to over 26 years.

It was September 1989. ‘Ride on time’ by Black Box was playing everywhere. My mum and I went looking for a chemist in Wimbledon Village to cater for my heavy medical needs in order to be ready for the start of my life as a college student at Roehampton College. When Raj first met me, I was a thin, young and naïve chap weeks before the start of my 1st year.

Up until then, my mum and dad had diligently acted as the conduit for me to receive my swathes of medication on time each month. From that September, as with everything when you flee the nest, the buck stopped with me. I had to get the bus from my campus to the chemist before carrying big bags of meds back on a return bus.

Raj, Jeet and co. have dispensed over 13,000 types of medication per year for me which roughly equates to a mind-boggling 350,000 over the 26 years we’ve known each other. I reckon they’ve had to see me over 650 times during this duration – lucky them!

More than a number
It’s one of the oddities of a life battling my relentless CF and CF-related diabetes, where there’s no remission or a single day off, that in most cases, we get to know our pharmacist very well. We need to be in touch every month. It’s a continuous process and an ongoing conveyor belt of medication. Imagine a ‘Lazy Susan’ with all sorts of different coloured pills instead of sumptuous Chinese food!?

We’ve shared many happy and fun memories over this time through what most people would perceive to be such a mundane and practical endeavour as picking up one’s drugs. It’s a crucial part of my survival strategy. After all, if I don’t have the meds, I cannot take them! If I don’t take them, I won’t survive for too long.

They’ve witnessed me grow up in every sense of the word (except in physical height). They know my wife Katie and son Felix and we know their family and exchange Christmas cards and gifts. I and my family combine a visit to the chemist when we go for lunch in Wimbledon Village or a pleasant walk on the near-by Common. This makes it not feel such an onerous task but makes it feel like a small part of a memorable day out.

Jeet would always come to the front counter to engage with me and make sure I had all the correct drugs – no mean feat when my prescription listed upwards of 15 different types of medication. We’ve got to know each other pretty well over snatched conversations and there’s a genuine interest in my family and a mutual love of cricket. He’s a hard-working, under-stated, humble, diligent and caring man with a supreme array of patterned ties.

Nothing was ever too much for him and he always gave me the right treatment – both the correct medicines and in the kind considerate way that he looked after me.

Having being expected by doctors to not live beyond 17 back in 1971, it amuses me that I have now outlasted both my primary physician (Dr Ron Knight) and now my pharmacist. What’s next for me?

Happy retirement and thank you Raj, Jeet and Chrishna. Never forget that you made a big difference in my life and my ongoing survival…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Here and There

Down here and up there

Down here and up there

Yesterday was a day I’ll never forget: I completed a horrid course of IV treatment to combat my cystic fibrosis (CF)* and then attended the funeral of a dear friend…

I’ve just undergone a three-week course of IV treatment, my first in 19 months. It’s been tough to revert back to being the ‘sick boy’ again. I stayed with my mum in Southampton for the first half of the treatment and then spent the rest of it back in London with Katie and Felix.

Having the exhausting and time-consuming IV drips three times a day alongside the rest of my usual medication equates to me only getting about three hours free of drugs during my waking hours. My illness really takes charge during these sessions.

While I was in Southampton, Martin Sleet, long-time friend from Southampton and former London house-mate, sadly died of leukaemia, 15 months since it was diagnosed. Martin was a helpful and forthright chap, with a passion for wildlife, particularly in the Ocean, and Southampton Football Club.

One of his enduring talents was the unique ability to eat a shocking amount of mustard on a cheeseburger. One might say that he had food with his mustard!

Martin had an obdurate approach to his suffering and endured endless stays in hospital, which sapped him both physically and mentally. It was in the hospital that my twin brother, Jez, and I last saw Martin, a week prior to his death. On the morning of his sad passing, I visited his parents to pay our condolences.

Dusk you and me
On the day of Martin’s death, as the remains of a sunny September day were turning into night, I went for a walk on Southampton Common. It felt appropriate to walk on the same park land which Martin would have frequented on numerous occasions, either socialising with our local group of friends or walking his family dog.

I needed to feel close to Martin, even though he wasn’t actually visible.

I went straight to the fallen tree, now covered in overgrowth, which myself, Jez, Chris, Ant and Martin used as a muster (and mustard) point before riotous nights out as callow youths.

Later on my walk, I stood transfixed at the Ornamental Lake, where I felt a light breeze on my face, and the juxta-position between the warmth and cold of my body depending on whether the sun was covered by clouds.

I studied the reflection of those clouds in the water, witnessed a woodpecker gliding from tree to tree and I saw some crested newts bob up and down to the surface, like Martin used to do with his scuba diving. Then to my astonishment I saw the beautiful and rare sight of a kingfisher bird on a tree overhanging the lake. In a whoosh of blue, it darted down into the water to grab its prey before flying off to some near-by trees.

It was a telling and thought-provoking moment – all this beauty on earth which Martin would have cherished, but sadly will never view again.

His death makes no sense and isn’t just. Cancer said to him, “I choose you Martin Sleet!”

Correspondingly, why have some of my wonderful CF friends and so many others, often under the age of 30, died of CF while I’m still here?

When will CF bellow to me, “I choose you Tim Wotton!”

Martin has gone to a place free of pain and suffering. For 44 years, he was here on earth, now he’s there, somewhere which I hope is heaven. I am still here and he is there. I’m lucky to still breathe this air and see all the beauty that surrounds me.

It’s chilling to reflect that during my IV’s and all that it brings with the extra burden of treatment, where I feel completely owned by CF, I do feel marginally closer to being there than being here.

The last few weeks have taught me so much. I’ve learnt once again to respect the living and honour the dead. It’s also reinforced my cast-iron belief that life can be short so must be appreciated to the full. Life is beautiful. Do not waste it. Treasure it while you’re still here…

Martin Giles Sleet. RIP my dear chap.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (author of Award-Winning CF Memoir)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Right there

soapSome divine intervention came my way recently just when I needed it the most; and it came in the most curious of forms…

I had been very busy at work, having gone many months without a worthwhile break. In mid-July, with my energy levels severely depleted, I succumbed to a harsh infection which really affected my lungs and exacerbated my cystic fibrosis* and diabetes. This meant a lot of extra treatment and physiotherapy, often fitted in late at night in order to get as good a sleep as possible.

Separately, one of my oldest friends from my hometown has been courageously battling leukaemia in hospital which has been utterly horrible for him and emotional for us to witness.

There had been a steady build-up and I was slightly on the edge – mind, body and spirit. I was holding out for some time off with my family. This nirvana came a few weeks back when Katie, Felix and I travelled to Portugal for a week of holiday.

Sign of the time
On arrival, in the reception area of the hotel, I was drawn to this teenage girl sitting in her wheelchair with family and friends. She looked like she had cerebral palsy. Despite being able to communicate with those around her, she was permanently dribbling onto a handkerchief draped over her chest. It made tears well up in my eyes, which in-turn accentuated my feeling of sadness.

On our way to the apartment, I definitely felt the need for some form of divine support or signal to help calm my soul and restore my life-balance.

I do look out for signs when life is too helter-skelter or feels out of control. These signs have come in the form of objects which keep crossing my path, songs which I keep hearing on the radio and certain lyrics or messages I keep reading in the form of repeat phrases, words or slogans.

Having been up early to catch the flight from London and following a tiring journey, I went to wash my face in our bathroom. And there was my sign – right there in front of me…

It was the bar of soap. Most of the time with such a functional object as a bar of soap, we pick it up, un-wrap it, use and discard it or put it back in the dish. Not this time.

On the wrapper of the soap was written the following words: ‘Enjoy your life!’

Three simple words. ‘Enjoy your life!’

But those words summed things up so succinctly. It served as a wonderful and timely reminder that life can be short, so it needs to be enjoyed. After all, can you think of anything better as your life mantra or to be said of you as part of your eulogy: “He/ she enjoyed their life!”

Who’d have ever thought that a humble bar of soap in Portugal would offer me the guidance I so badly required. It was quite literally, the right sign at the right time.

Keep your eyes and ears open as your much-needed signal could be right there in front of you… What sign will you see or hear today?

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (CF author)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Never Thought…

Team Wotton playing cricketThis month, I wanted to highlight some things I’d never thought I’d ever do, say or feel in my 44 years surviving the life-threatening condition cystic fibrosis (CF)*…

DO
Getting married, let alone just celebrating my 12th wedding anniversary with Katie via a trip to see the Seven Sisters coastline in East Sussex!

Having a healthy son (Felix is now 8 yrs old)

Playing hockey and cricket with my own son.

Going to the gym and not feeling completely out of place in relation to the fitness of the other gym incumbents.

Playing league hockey for my 30th consecutive year.

Helping so many people in the UK and around the world with my writing (this blog and my book) and through other media.

Being a published author with my memoir ‘How have I cheated death?’ and seeing my book in Waterstones and recently winning a book award (in May I won the Best Achievement award at the UK People’s Book Prize)

Being closer to 45 than 40.

Meeting an active and fit CFer who is nearly 60 (#JerryCahillCFLegend)

SAY
Sharing my views on ‘bucket lists’ with terminally ill Rowena Kincaid for a BBC TV documentary ‘Before I kick the bucket’ (for the record, I don’t keep a bucket list but enjoy the small things every day)

Using my pigeon Spanish to respond to people in Brazil and Argentina on Facebook who saw a short documentary about me which recently appeared (with Brazilian Portuguese voiceover) on the popular Brazilian programme ‘Domingo Espetacular’. A man called Souza Carlos told me on Facebook: “I just saw your interview. Man, you’re a winner. Congratulations!”

Saying “the music was better in the 1980’s” (OK, that’s a trick one. I’ve been saying this line since 1st January 1990!)

Exclaiming “What’s 4 extra tablets a day when I’m already swallowing 40!” on hearing that a possible new drug ‘Orkambi’ comes in pill format.

Commenting not in jest and with much passion, “I love peas and lentils.”

FEEL
Being mindful of appreciating each day and making a tangible difference to those around me.

Finding a way to manage my daily health demands with a demanding business role.

Feeling moments of complete and unadulterated contentment with the pure joy of life.

Being at peace with myself, my illnesses and with the world.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim
Tim Wotton (CF author)

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.
http://www.amazon.co.uk/How-Have-Cheated-Death-Unabridged/dp/B00TQKDA2U/ref=sr_1_3?s=books&ie=UTF8&qid=1427321515&sr=1-3&keywords=tim+wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Never Stop

Winning my book award at People's Book Prize

Winning my book award at People’s Book Prize

An eventful last month and cystic fibrosis (CF)* week in the UK can be summed up by two words: NEVER STOP

Never stop forgetting those dear CF friends and acquaintances that have sadly passed away from this relentless condition. Recently over the course of three days I learned of the deaths of four CFers. One was my mid-50’s mentor and fellow author Richie Keane from New York, who I had exchanged a lot with on social media.

– It’s funny how life works. When I was sitting in London’s Embankment Gardens thinking about the sad loss of Richie Keane, Neil Tennant of the Pet Shop Boys walked past! I greeted him, we shook hands. I told him he was a star and he said “Thank you. So are you!”

Never stop improving the awareness and understanding of the general public about CF: the daily medical regime required to defy an early demise and the appreciation that despite this incessant condition, CFers can and do lead full lives and make a difference.

– CFer Bianca Nicholas from the group Electro Velvet sung her heart out for England in the Eurovision Song Contest, Nick Talbot has bravely taken on Mount Everest twice and Richard Eagles is about to go to Ecuador with other transplant recipients to climb Cotopaxi, one of the highest volcanos in the world, as part of an amazing adventure called ‘Climbing for my Donor’.

Never stop developing new medicines to make a step-change in our health and survival chances. Vertex are bringing to market the new combination drug ‘Orkambi’ (I want the job of coming up with drug names – I can do better than ‘Orkambi’ – sounds like’s Bambi’s cousin!) which will benefit 50% of CFers with the double Delta 508 mutation (if it’s funded – hint hint) and the UK Consortium are making good progress with their on-going gene therapy trials. Pharmaceuticals must never stop until CF stands for Cure Found!

Never stop connecting and engaging with each other on social media. Due to the risks of cross-infection, we CFers have been advised not to see each other face-to-face, which can make it a very lonely illness to combat. CF Week in the UK 6-13 June has the ‘Power of Us’ theme which encourages the CF community to share their stories.

Never stop my utter commitment to the daily medical regime, regular exercise, sport & gym sessions and topping up my cup of positivity.

Never stop sharing experiences, life lessons and knowledge on surviving CF, as I have done with this blog and also with my memoir ‘How have I cheated death?’ and recent US podcast explaining the rollercoaster ride which Katie and I endured to become proud parents to our son Felix.

– I’m now an award winning author – my book won the ‘Best Achievement’ award at the UK’s People’s Book Prize in late May, televised by Sky News. (Go to 20:00 to see my winning speech)
My podcast with CF legend Jerry Cahill about my survival and being a dad with CF.

And finally, never stop celebrating and maximising each and every new day that we’re given with our friends and family.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim
Tim Wotton (CF author)

Find out more about CF Week in the UK.

Find out more about Richard Eagles’ ‘Climbing for my Donor’ adventure and if you can help with his funding; a huge thank you!

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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A love worth giving

Sam board
I want to publicise a documentary about a tragedy that could affect any of us… the need for transplant organs to help conditions like my cystic fibrosis (CF)*…

‘A Love Worth Giving’ tells the extraordinary story of newly-married Sam and Luke, a couple madly in love. Sam has CF and her health is getting worse, her only hope of survival is a double lung transplant. (Poignantly, you can see what Sam desperately wanted as she wrote it on her board at home: ‘Please God, Come on Lungs!’)…

Together they build a life around the physical and emotional challenges of waiting for a donor, a roller coaster journey of false alarms and hospital stays. One night, Sam was called to the hospital as a pair of lungs had become available but unfortunately they found out that the organs weren’t viable and the next morning, they were sent home.

Everyone thought Sam would get a transplant, especially Luke. But the pool of available organs was extremely small and Sam’s condition was deteriorating. The disease had progressed so far that it destroyed her lungs and in April 2013, she stopped breathing entirely. Her wait for an organ donor had taken too long. When Sam died waiting for new lungs, all her family and friends went into shock.

James W. Newton, close friends of Sam and Luke and a film director, asked himself: why don’t more people donate their organs when they die? The answer, of course, is far from simple but it got him thinking – wouldn’t more people want to be organ donors if they knew that thousands of people, like Sam and Luke, are waiting for a transplant?

To donate or not to donate
More than 10,000 people need an organ transplant in the UK, but 3 of those will die waiting every day.
The UK operates on an opt-in system where you have to declare your wish to be an organ donor and it’s for this reason why raising awareness of the need for donors is so important.

The death of a registered donor could transform the lives of up to nine people and there are many conditions – including CF – where patients are dependent on the generosity of organ donors for successful treatment.

Could Sam and Luke’s tragic story raise awareness of the need for more organ donors or perhaps one day, even initiate a fundamental change to an opt-out system of organ donors?

Through telling Sam and Luke’s story, the director hopes to encourage others to think about donating their organs when they no longer need them. We can all make a difference, even after our death.

This is explained better in this short Kickstarter video.

How you can make this film a reality
‘A Love Worth Giving’ tells the story of Sam and Luke, a young couple torn apart while waiting for a new pair of lungs. It’s a short documentary that highlights the need for organ donors in the UK. But the Director urgently needs help to raise the funds to finish the film and release it to audiences worldwide…
You can check out some of the amazing rewards and make a pledge here:

I’ve pledged my support to this initiative. I encourage you to help as well.

After all, one day it could be my family and friends waiting for that donor call for a new set of lungs for me; and when it doesn’t come, watching me take my last breath…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (CF author)

Find out more via the ‘A love worth giving’ website

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

My memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early by May 2015!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Mirror Man

Imagine meeting someone for the first time and you both knew each other inside out? Well, that’s what happened when I recently met a cystic fibrosis (CF)* veteran from America…

I met Jerry Cahill in a London hotel to record a podcast for the global community, on behalf of the Boomer Esiason Foundation, about my experiences of being a dad with CF. Jerry is a late 50’s CF legend from New York State. He has had a successful business career, sporting life in track and field (particularly the pole vault) and a will to live, which was helped by a double lung transplant a few years back which he took amazingly in his stride.

His mantra ‘You Cannot Fail’ has always influenced the way Jerry lives his life and it has become his personal mission to spread that message to as many people as possible. He firmly believes that you should never give up hope and always, always strive to be the hero of your own story.

Due to the risk of cross-infection we were mindful to keep a distance from each other and not shake hands. But even though our personal contact was limited, it was obvious that something interesting was taking place over the 90 minutes we spent together…

Meeting my match
Meeting an older CFer like Jerry was like looking into the mirror but viewing me in a different guise. Although we didn’t look the same and we spoke in different accents, we were clearly cut from the same cloth with our DNA – not just that we had CF and related diabetes – something more holistic and ground-breaking.

Just like me, he believes that everyone should be proud of his/her achievements, big and small, and should find the magic in just being alive for another day.

Just like my family, Jerry’s family took everything day-by-day and never let themselves over-focus on the illness or the possible complications that could arise with CF at any time.

We are both on an even par of positivity, focusing on living, breathing and making a difference to our lives and the lives of others. In a symbiotic way, we intuitively understand that CF is an integral part of us but it does not define us and it does not overly hinder the way we wish to live our lives.

With almost no need to verbally confirm it, there was this immediate bond and kinship. We just got each other; having gone through many of the same daily health battles, popped the same pills, nebulised the same drugs, suffered the IV treatments, injected the same insulin, coughed in harmony thousands of miles apart but equally fought back relentlessly time and again through our medical adherence, sport and unshakeable mental fortitude.
Jerry Cahill

Looking through Jerry’s book of inspirational quotes and his survival insights, I was left in awe by a photo of him running the ‘Run to Breathe’ 10K in New York’s Central Park while on oxygen pre-transplant. If ever there was a photo that encapsulated ‘triumph of the spirit’ and demonstrates what it takes to defy a life-limiting illness like CF, this was it.

If ever you needed inspiration or perspective, I’d like you to remember this image. I’ll never forget meeting my mirror man…
IMG_4914

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.

Tim
Tim Wotton (CF author)

For more information on Jerry Cahill, visit his website.

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

My memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early by May 2015!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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