Lessons learned

Something very important happened 25 years ago this week which taught me some critical lessons in life and in particular coping with my chronic illness cystic fibrosis (CF)*…

On 24 September 1989 (a Sunday), I started three years at university – Roehampton College in South West London.

On that very day all those years ago as my dear parents delivered an apprehensive (but strikingly handsome) youth to his new life, the 28th Ryder Cup played out to a draw at the Belfry in Warwickshire, England which allowed the European team to retain the most famous golf competition since they had won it outright two years before.

At that time 25 years ago, ‘Ride on Time’ by Black Box was number one in the UK music charts and ‘Girl I’m gonna miss you’ by Milli Vanilli topped the US chart. Indeed, it was the year Keisza, the popular Canadian music star, with the current dance hit ‘Hideaway’ was born!

The first Michael Keaton ‘Batman’ film (with the Prince soundtrack) and ‘Bill & Ted’s Excellent Adventure’ were popular in cinemas. George H. W. Bush and Margaret Thatcher were the respective US and UK leaders. 1989 was the year that the World Wide Web was first conceived of in Switzerland by Tim Berners-Lee.

I began this new stage of my life on the back of the August 1989 triumphant announcement by scientists from the US and Canada that they had discovered the gene associated with CF. They predicted that a drug to treat the disease was in reach. Sadly, I am still waiting on that one.

If I could speak to that callow 18 year old back in September 1989, standing bewildered with a heightened sense of trepidation in his college room, what would I tell him?

Experience is everything
As well as the knowledge acquired attending actual lectures (none of which really helped my future career as a communications specialist); I learnt the most about managing my health through experience during this time.

Further education – the need to enhance my education didn’t just apply to stepping up to university from school, getting to better know (but never fully understand) the fairer sex (lessons in love you might say); it also related to the need to educate and coach the people I met there about my condition as it was little heard of and understood back then. In my day (I’m now officially old enough to use this expression), I recall that there was a rumour doing the rounds at college that I had MS rather than CF.
There’s a big difference now relating to the general awareness of CF compared to 25 years ago but it still has a long way to go.

Ingenuity – I discovered the flexibility required to cope with changes of plan and out-of-the-blue challenges. In my Halls of Residence, the room didn’t have the right plug fittings so I needed a long extension lead which went out of the room and down the corridor to use my crucial nebulizer. Back in those days, it was a big and noisy compressor that wouldn’t have looked out of place in the engine room of the Titanic and it involved the most unsubtle tubing out of the window. With the extension cable out of the door, the industrial noise of the compressor and the tubing out of the window, there was no hope of making my treatment secretive!
After a week, I was able to move to a room (Roberts House 116) further down the corridor which had the correct plug fitting which meant I only had to contend with the drill hammer noise of the nebuliser and the tubing out of the window.

I had to utilise wooden blocks on the legs of the bed to elevate it for my physiotherapy sessions to achieve the appropriate postural drainage position. They were prone to slipping mid-treatment which was a scary proposition for all concerned!

I had to be astute with public transport to take me to GP appointments, physiotherapy sessions at Queen Mary’s hospital in Roehampton and travel to both Royal Brompton and Frimley Park hospitals.

I also had to take a deep breath (easier said than done with CF!) when the on-site campus doctor kept referring to my illness as ‘mucoviscidosis’ rather than cystic fibrosis. His terminology, much like his medical ability, had long since passed!

Unexpectedness – I discovered that the milk of human kindness can be found in some unusual places – some of the lads (and on-going best friends) I met at university helped me with my physiotherapy most evenings while watching Neighbours on my tiny red TV! The power of friendship leaves me speechless.

Unhappy Eater (AKA Let them eat cake) – It was vitally important to eat as much as possible to keep my weight up to stave off lung infection. Unfortunately, the food in Halls was most unappetising. I supplemented this with takeaways of pizza and Chinese takeaways and cycle rides on Tuesday mornings (no lectures) to the local shops in Southfields to buy cake and other goodies. It wasn’t a surprise that I had more volunteers to help with my physiotherapy on Tuesdays so they could raid my stash of sweets!

Stay the course – to maintain my health in order to allow me do my studies and have fun, I couldn’t afford to cut any corners with my medical care. It was at college that I really understood the importance of my now embedded mantra ‘I’m only as healthy as my last treatment’.

Life’s for living – university life was a never-ending social carnival – I chose not to hold back as those who witnessed me in action (and often lost in action) will testify.

Regress to progress – I suffered many health setbacks. Taking responsibility for my healthcare was often a case of one step forward and three back. But I learnt what worked for me (as everyone copes differently), what treatments never to miss, how poor health made me feel and that the ability to keep defying CF is addictive.

Owning my health – my time at college was the first crucial step to being accountable for the ownership of my illness and not relying so heavily on my parents for guidance and treatment reminders. I learnt more in those three years at university, and especially fending for myself in that first term, than I did in the previous 18 years at home cossetted in the warmth of family care by my beloved parents and brothers.

Along the way, this period contained many health pit-falls, heartache for my parents (seeing me struggle) and lessons learned a-plenty that would serve me well in the long-term as I forged a career, played sport, got married and became a dad. It was the end of the beginning…

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)

Your help please:
My CF memoir ‘How have I cheated death?’ has been nominated for the UK People’s Book Prize! Please help me to win by voting for me via this link.

* 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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One day

One day last week I learnt of the sad passing of my long-term CF friend from the chronic illness cystic fibrosis (CF)*…

Sean Bell, from Manchester, was my main CF mentor. He was 47 years old and I learnt much from his extra experience of battling the illness and having a wife and children. As he had a new set of lungs seven years ago, this was something that I was keen to understand should my own health take me in that direction. He was someone I greatly admired and looked up to for surviving so long and being born in an era where the outlook for CFers would have been particularly bleak.

Over the last decade we’d exchanged regular emails and had annual phone call catch ups. It was clear from the start that we shared a similar dark and wry sense of humour while enjoying the same lust for life. We also had the same appreciation of our health situation and corresponding rich perspective for our family, friends and an uncanny ability to relish the happy times.

One day
I had my concerns that something might not be right as I’d not had any replies from a spate of recent emails to Sean. Silence not being so golden you might say. Then one day I decided to ring his home number, even crossing my fingers as the number was being dialled, hoping that I’d hear Sean on the other end… but Lesley his wife answered.

After a short introduction and once Lesley realised who I was, she gently explained that Sean had peacefully passed away a few days before, following complications with his transplanted lungs. It was a surreal conversation but what struck me the most was Lesley’s utter compassion, bravery and un-dying love for a man who had been so determined to stoically defy the medical odds.
I’ve said it before and I’ll say it again, the partners of adults with CF and other life-threatening illnesses are special people indeed.

The last seven years meant more precious time for Sean with Lesley and his lovely daughters Scarlett and India. I can only imagine that they cherished every single moment of the time that those donated lungs gave them together. One anecdote that Lesley shared really impacted me. Post-transplant, when Sean could again do the school pick-ups for his girls, it was the first time they had seen him break into a run, such was the debilitating state of his lungs before the operation.

As I finished the phone call with Lesley, the heart-breaking news I’d just received hit me like a ton of bricks. Tears flowed down my cheeks and steamed up my glasses. I sent a burred text to my wife Katie with the news and how crestfallen I felt and she replied equally perturbed. We both understood the resonance of this news. Although 10 miles apart in London we were both crying for someone we’d never met and felt desperately upset for his wife and children.

In that instance, Katie and I knew that one day it could be our family and friends crying at the news of my passing from CF.

Strange relationship
The news made me reflect on the strange dynamic that pervades for most people with CF who due to the risk of cross-infection are not supposed to physically meet each other. These are friendships with people you never actually meet but instinctively know and understand what makes them tick – their daily medical regime, the pure highs, the deflating lows, the importance of family support, the need to make every second count and the rich life perspective gained by defying the odds of survival every day of their lives.

It also served as a reminder that there is some risk in getting to know other CFers. I have been keen to learn from the experiences and survival strategies of other CF adults, so in my experience it’s a risk worth taking.

One of Sean’s many legacies was to encourage and inspire me to keep me up the good fight, try to have my own child, enjoy being a parent once Felix was in my life and place another brick in my fall of fortitude that keeps me battling this incessant condition each and every day. He touched my heart, my soul and helped to expand my future life goals.

I wrote most of this blog while listening to the album ‘Destroyed’ by Moby, which was exactly how I felt on hearing the news about Sean. One track from that album, ‘Lie down in darkness’, felt most apt.

But over the last week, it has renewed by determination that more needs to be done to find treatments and a cure for this disease so that good guys like Sean are not lost in their prime. This is typified by one of the campaign slogans of the UK CF Trust in their 50th year anniversary: ‘CF – a fight we must win!’

Goodbye Sean, breathe easy my friend. You are well loved, sadly missed and made a huge difference to many people (me included).

I’ll finally get to meet you one day…

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)

View my recent article in the Daily Express article

* 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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Doing the write thing

Here’s my top ten list of lessons learnt in the last few months since the publication of my book about surviving the chronic illness cystic fibrosis (CF)*…

1. Proof is in the pudding.
The feedback so far has been extremely promising and affirming for me as the author. Word of mouth and some marketing have helped it become viral and popular. It has been ticking the boxes in readers that I hoped it would – it’s been providing people with more knowledge about the illness (know), it’s been emotive through tears and laughter (feel) and is offering them perspective on their own lives and where appropriate some tactics to manage CF or other health conditions (do). Below are some sample reviews I’ve received…

“This brilliantly written book is a compulsive read. I struggled to put it down from the very first page. Tim’s honesty and openness drew me deep into his personal journey. At the same time his passion and gratitude for life in the face of painful, unrelenting challenges inspired a great deal of self-reflection. The text is profoundly moving yet filled with humour and light.” Work colleague

“Loved this book very true to life for me as I also have cfrd. An invisible illness that very few understand unless you have a loved one with it or have it yourself. Very well written, a great read!!!” CF adult

2. Cherry picking. It always intrigues me which story, joke, poignant moment, insight or chapter of the book appeals to each reader and why it resonated with them. Some have expressed their surprise at exactly how candid my writing has been, but in my defense and to borrow a line from the Mastermind TV programme – ‘I’ve started, so I’ll finish!’

3. Who knew? Book reviews received on Amazon are not syndicated onto both the UK site (co.uk) and world-wide (.com). websites so if someone has reviewed me for one site, it won’t appear on the other! Also, Amazon reviews are extremely important to where an author is placed in the chart of top writers for both the co.uk and .com. After a spate of kind reviews, I recently was placed 433 out of 6 million world-wide authors. Thanks to those who have already written reviews and given me 5 stars. Feel free to add more please!

4. Great pretender. Signing my book in public situations (my mum’s house and at Wimbledon Waterstones) and ‘pretending’ to be an author feels humbling and invigorating. It’s a special moment of celebration for the community of people who’ve followed by life-story all these years. It’s been great to have the company of close family (including Katie, Felix, Jez and Julie) and friends at these events which have doubled up as vital fundraisers for CF.

5. Marathon man. The promotion and marketing of one’s book is a marathon not a sprint – day by day, week by week, month by month you reach new audiences. There’s rarely a ‘big bang’ moment in the early days.

6. Counter-intuitive.
There’s no real science behind who does or doesn’t buy or onwards promote the book. Some people whom I expected to have bought or marketed the book have not done so yet; while there have been complete strangers around the world who have purchased it straight away.

7. The write way. People are really appreciating my written style, the insight and the engaging prose contained in the short, thought-provoking chapters of the memoir. I am often hearing that they read it very easily and ‘can’t put it down’. It’s certainly an encouraging sign that there’s an appetite for my reflections.

8. By popular demand. I am receiving a lot of requests from readers to write a follow-up which is a good sign that there’s a growing appetite for my story and how it comes across. The good news is that my second memoir is already being written… I’ll keep you posted of progress.

9. Tongue-tied. It was surreal being recently interviewed for a UK national newspaper (Express Online) by a long-term friend from my Southampton school.

10. CF waits for no one.
During the first few months of the book’s release I suffered with the backdrop of quite a serious lung infection and a marked increase in my habitual coughing both during the day and frustratingly during the night. CF is not at all sentimental and can be the worst party-pooper. It certainly appears not to be climbing on my band wagon of celebration for the book. There is also the not unsubtle irony of the title of my book ‘How have I cheated death?’ when I’m feeling so unwell and coughing so heinously.

So, it appears that I’m on the ‘write path’ with this memoir. Its popularity and positive feedback received justified the vision I had a few years ago, plus all the effort to write it in my spare time and secure a publisher.
My book arrived at a good time for me as an author and for those who’ve read it so far. Perhaps it was ‘write on time’…

Tim Wotton – the best-selling author (in his own house)

Winner of a copy of my book – In my last blog post, I asked for suggestions for another CF-related book or film title… The winning title was ‘Harry Potter and the Half Lung Function’ by Jess. Well done! She will receive a copy of the book in the post.

How to order a copy
Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM

Other media – see my recently launched website, the Guardian blog on my survival and hear my radio interview on Kerry Radio.

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

* 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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Live to tell

This last month has seen me notch up another milestone – that of book author – as I published a memoir of my 40 year battle defying the chronic illness cystic fibrosis (CF)*. Read on for more exciting news…

The month of May really has been crazy. It started with a house full of 15 marauding children celebrating our wonderful boy’s 7th birthday. I then got a cold which wasn’t helped by playing a Phantoms hockey game in the West of England (the night out was good though). Since then I’ve been to Holland with work and I was severely chastened by the 18 months anniversary since my poor dad passed away from Motor Neurone Disease.

And now my book is published by Austin Macauley and is available for anyone in the world to read. That feels pretty awesome, humbling and bewildering in equal measures. Indeed, last week involved one of the most surreal moments in my life – lying in bed at night time, I turned over to witness Katie reading my actual book!

So, how did this book reach its ‘tell by date’?

Telling my story
After reading Jean-Dominique Bauby’s exquisite chronicle ‘The Diving Bell and the Butterfly’ in the mid 90’s, I always knew that someday I had it in me to write my own candid, funny and profound book. Well, that day has arrived.

Back in 2011, I felt that reaching the age of 40 with CF merited the sharing of my battle with this relentless condition. I wrote a diary during the year leading up to my illusive 40th and this book is the output.
To seek re-assurance on my story and written style, I have used some extracts from the book in my blog posts over the years to assess their impact. I like to think that the finished product is a thought-provoking and amusing memoir which systematically unpicks what it has taken me (physically and mentally) to defy the medical odds both with the CF and recently diagnosed type 1 diabetes.

The book elaborates on my extensive medical regime, going to University, getting a job, the importance of sport, alternative therapy, faith and a positive mental attitude to counteract the multitude of dark moments. It also highlights the significance of family support, my marriage to Katie and the rollercoaster journey we undertook to start a family which finally delivered us the awesome Felix.

I am hoping to reach a global audience with this book, the first book written by a CF sufferer at 40 (that I’m aware of). The CF community should derive some hope and survival strategies from my story while wider audiences will hopefully understand CF better and appreciate what it takes to combat it on a daily basis.

I hope that my candid story will provide insight and solace to anyone suffering with a chronic condition, but equally offer perspective to perfectly healthy people.

Tim Wotton and his book

Tim Wotton and his book

What’s in a name?
The title of the book, ‘How Have I Cheated Death?’ is not an obvious choice but it was the title of my Guardian news feature three years ago which is still popular. Trust me, I did take my time deciding on this and I looked at many other book titles…
I could have gone for some obvious titles like ‘Breathless’, ‘Survivor’ and ‘Every breath I take’. Being mischievous, I could have gone for some comedic or playful title such as:
‘Confessions of a serial pill taker’
‘Everything you wanted to know about CF but were afraid to ask…’
‘How I cured my 40 (pills) a day habit?’
‘This is 40… with CF’
‘Gone with the cough’
‘Coughin’ in the rain’
‘Cough Hard’
‘The Coughing Games’
‘Shadowlungs’

But in the end, I was keen to be provocative and de-mystify CF for a wider audience, so I kept the Cheating Death one instead. I hope it gets your and other people’s attention…

How to order a copy
Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM

I sincerely hope this book strikes a chord with anyone who is kind enough to purchase a copy. Also feel free to share this book news with your family, friends and work colleagues if you feel they would be interested.
I am looking to fundraise for CF at the same time as launch this book and will keep you posted on forthcoming activities.

Our CF lives are a narrative of triumph over adversity. By overcoming this rotten illness day-in-day-out, we all demonstrate what cannot be cured needs to be endured and thus offer hope and inspiration. I’ve fortunately lived long enough to tell you my narrative. I hope it reads well…

Win a copy of my book – if you can suggest another CF-related book or film title, I’ll choose my favourite one and post a free copy of the book to the winner… best of luck!

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

Congratulations to my cousin Sarah and CF friend Emma for successfully completing the recent London Marathon and good luck to my wife Katie as she runs both the London 10K and Parks Half-Marathon in the next few months. Should you wish you can sponsor Katie 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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Days like this

Knowing when you feel content is a tough trick in life. Is this harder or easier for someone, like me, battling with a long-term illness like cystic fibrosis (CF)*?

Being ‘in the moment’ (as is the modern parlance) and realising when life feels right or even perfect is a wonderful sensation for any of us. When it happens to me I have a sense of tranquillity; where I feel balanced and almost invincible. Simply put, I just feel utterly happy to be alive and grateful for all my blessings. I’m delighted ‘as is’ instead of wanting ‘to be’.
Recently I had the fortune to enjoy a whole day of such joy…

7:00AM It all started on a Saturday morning. I had got up early with Felix. As he’d done so well at school I had bought him a new Tintin book (In America) which he’d been wanting for a while. I left it downstairs for him to find as a surprise. On seeing it on the lounge table, he did a double-take and with unbridled joy performed his ‘happy dance’!

8:00AM We both enjoyed that Saturday morning luxury of not having to rush about as we would normally do on a work day/school run. While eating porridge we watched the ‘Despicable Me 2’ film which always makes us guffaw and features our favourite song ‘Happy’ by Pharrell Williams. Katie joined us for breakfast before driving off to near-by Kingston to go shopping.

9:30AM While Felix was getting changed, I took the chance to quickly view my emails and read a note from my recent CF acquaintance, Lucy Watson, who lives in Australia but originally comes from England – not only have we been mentoring each other on CF survival tips and health supplements but it turns out that both our mums knew each other from CF fundraising decades ago. Proof if ever needed that this is a small world.

10:30AM We met up with my twin brother Jez and his partner Julie and in the lush Spring weather we first visited the lovely grounds of a Buddhist Temple in Wimbledon before spending the rest of the morning and lunch in Wimbledon Park; a stone’s throw from the Wimbledon Tennis Championship courts.
It was the beginning of a glorious day with blue skies, bright sunshine, daffodils blossoming – a welcome break from the months of heavy rain that England has endured. It quite literally put a spring in our step as we trekked around this beautiful park.

12:15PM Before lunch Felix was feeling peckish so Jez offered him a tube of refresher sweets. Turns out that Jez carries sweets on his person whenever he meets me to mitigate against any diabetic hypo I might suffer – such a caring and thoughtful gesture and typical of him. Felix appreciated the gift as well!
This was followed by a game of crazy golf with Felix – I was delighted that he’d improved his technique and was now prepared to wait for me to finish putting on each hole before speeding off to the next tee.

13:30PM After dropping Jez and Julie at the top of Wimbledon Hill, we had a brief rendezvous back at home with Katie before I got changed into my field hockey kit and drove to the Bank of England sports ground in Roehampton for my London Edwardians league game against a strong Kenley team.

14:30PM I was asked to start the match. During the warm up, I reflected on the recent tough IV treatment I’d endured where I’d undergone grave doubts whether I’d be fit enough to play hockey again, let alone actually start a game. When in the midst of a depressing IV session, which can drag me down like quick sand, there are absolutely no guarantees of playing sport again or being properly active. When walking up a flight of stairs can cause me untold breathlessness, the thought of playing competitive sport is furthest from my mind.

Whenever I play hockey these days, just being on the astroturf pitch brings back salient memories of my dad, rest his soul. I always look to the sky as I start every game and have a quiet chat with him, which helps me to feel his presence once again. He hardly missed any of my games when he was alive and it invigorates me to think he catches every game from the lofty heights above.

16:30PM We had a hard-fought and much deserved 3-1 win over Kenley which at times tested my fitness and lung capacity to the extreme. This was followed by the usual post-game team refreshments in the bar along with all the sporting rituals of naming ‘man of the match’ and ‘idiot of the day’. (I was not named for the latter award in case you were wondering). It was in the bar that I began to feel that happy glow of post-exertion tiredness that envelopes me like a snug duvet and emphasises exactly what I’ve physically put myself through.

18:00PM Back home for family time, Felix bath and his bed time reading of the new Tintin book. It brought back sweet memories when I was a child as I used to enjoy reading and being read these books by my parents.

19:00PM Once my boy is asleep, I’ve got a short window to sit at my laptop and edit another chapter of my forthcoming CF-related book which is due for publication in early May. I recently discovered through email correspondence that the publisher’s proofer of my book has a young brother with CF and she was shocked and pleasantly surprised to review a book about the illness – another small world moment!

20:00PM I had some light dinner with Katie before popping out to Balham in London for my hockey friend Tina’s birthday drinks; which allowed me to catch up with some friends I hadn’t seen for a while and to celebrate the earlier hockey win. Beer always tastes better after a sporting win…

23:45PM Back home on the tube before midnight for a well-earned sleep. Lying in bed, Katie stirred which allowed me to hold her hand briefly without waking her up. As I drifted off to sleep, I reflected back on the day that had just occurred. It was an extraordinarily busy but wonderful day. It was a special day, despite the fact that I still fitted in all my CF and diabetes medication. (I purposely decided not to highlight the actual array of treatments during this day, but rather focus on the good moments).

A constant stream of love, joy and happiness pervaded through the whole day. Although it didn’t merit performing my own version of Felix’s happy dance, I was positively buzzing inside. I felt pure gratitude. Today was a memento for me to treasure always.

It served as a timely reminder that happy days can often be just around the corner which is particularly uplifting following some dispiriting times, like my recent IV treatment. It provided another deposit in the ‘Tim Wotton Bank of Hope & Well-being’ that gets severely pilfered during the rough times when my health crashes.

From my own experience and that of others I know, people with a life-threatening condition have a pronounced ability to not only identify but to fully appreciate magic moments and days as they contrast so strikingly with the usual daily hardship.

Indeed, I strive to defy the ravages of CF in order to keep as well as possible to be ready for and enjoy days like this.

‘Oh, such a perfect day
… just keep me hanging on’

Lou Reed – Perfect Day

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

* 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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Time Out

‘There’s always someone worse off than you.’ Taking time out to manage my debilitating illness cystic fibrosis (CF)* has allowed me to evaluate this saying…

Just like a greyhound chasing and finally catching the rabbit, my CF has caught up with me again. My lungs have deteriorated enough that I required some intravenous (IV) antibiotics. Though only a moral victory, this is the first time I’ve had to endure an IV for 16 months, which is the longest period I’ve gone without such an intensive treatment since my teens.

However, it means taking time out from the real world and my busy life in London as a business consultant, husband and father for a spell of recuperation time with my mum in Southampton. It’s proved to be a real shock to the system. Being away gets harder with every year that passes. This was reinforced by Katie relaying to me that Felix had recently said “I want daddy!”

It serves as a harsh reminder for this 42 year old that I can run but cannot hide from my unforgiving illness. One always feels hunted down by this condition.

In the last two weeks I’ve been through the mill. As well as feeling very washed out, the IV drugs have given me a few nights of delirium; one in particular was so fierce that it gave a new meaning to ‘Saturday Night Fever’.

As these IV treatments can take up to two hours three times a day and I’m still maintaining my usual CF and diabetes medications, a significant chunk of each day is medical related. It feels at times like a tag team event between each different drug.

I’ve also had to put up with a persistent pain and discomfort where the PICC IV line goes into my arm which recently had to be re-dressed at the local Southampton General Hospital.

Yes, it’s been rather a torrid time to be honest and it’s initiated in me the first really depressive thoughts for quite some time. At such times there is a natural tendency to really cover oneself in the bubble wrap of despair.

I have been able to utilise the little downtime to spend quality time with mum, see my brothers, my elder brother’s family, local friends and I did have a form of day-release to meet with Katie and Felix half way between Southampton and London. I’ve also been able to visit the rest home of Betty Lacey, the wife of Ken whom I featured in my last post ‘Always there’.

In this departure from reality I’ve had more time to view the outside word from within. See below a snapshot of CF news I’ve heard from local friends in Southampton or seen on social media, TV and in the press:

- A mystery CF diagnosis of an infant storyline on the UK TV programme ‘Call the Midwife’.
– A local Hampshire girl, Sarah, is responding well to the new lungs following her much needed transplant last November.
– A 31 year old mum in Ireland is belatedly diagnosed with CF following the diagnosis of her own child. She had been treated for chronic asthma all her life and CF had been missed.
The UK CF Trust have kick-started their 50 year anniversary activities with CEO, Ed Owen, on BBC Radio 2 talking about lung transplants but also launching their ‘No Party’ theme – highlighting that CF is no party as well as mandating that they won’t party until all CFers make it to at least 50!
– A 38 year old CF adult from London, Nick Talbot, is hoping to climb Mount Everest in June. Nick is an experienced mountaineer and is boosted by the wonder CF drug Kalydeco.
– A worried dad in Australia asking for help and advice for his recently diagnosed two month old daughter.
– A girl, claiming she was not a CF sufferer, on an online CF forum berating all CFers for making light of their illness with their ‘gallows-style’ humour.
– CF adult advisor for Scotland, Yvonne Hughes, taking part in a trial to see if singing can help lung function for CFers and separately signing up for the Great Scottish swim later this year.
– Danish scientists have discovered a natural garlic compound, ajoene, which could help fight CF infection. Tests are being carried out on rats. (Apparently, the male rats claim their lungs have never felt healthier but the females have stopped kissing them!)
– The British actress Jenny Agutter featured in a Daily Mail article that focused on her niece who has CF and the possibility that two of her siblings could have succumbed to the illness.
– My cousin from Oxford, Sarah McNaught, has sent out a donation website ahead of her wonderful commitment to run the London marathon in aid of CF.
– A wife asked for prayers as her husband was rushed to hospital in America to receive his donated lungs.
– A much loved 15 year old boy in America and a beautiful 23 year old girl from the Faroe Islands sadly passed away due to CF.

This full spectrum of news demonstrates that CF is a global condition and engulfs many people – from the sufferer, to their immediate family and associated friends. The last two sad stories are pretty commonplace on the web and provide the quickest antidote to any self-pity I might ever feel.

The news highlighted that there are very few winners with CF and helped me to re-set my mind set to the truth that even though I may be having a tough time in my microcosm of IV frustration, that there is always someone worse off than me. I can never be grateful for my suffering but I am deeply appreciative of every breath I take and any extra time I have in this world.

Taking time out is never going to be easy but it is vital to help galvanise my health so that I can return to my fulfilling life in London. However difficult it is to achieve, perhaps we can all benefit from occasionally taking time out to see the bigger picture around us?

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

* 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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Always there

It’s not just close family and friends that help people with chronic illnesses like cystic fibrosis (CF)*. The recent death of one of my unsung heroes reinforced this…

I received a text from my mum a few weeks ago breaking the sad news that Ken Lacey had died aged 92. Ken and his wife Betty, who survives him, were like pseudo grandparents to me.

We’ve known Ken and Betty Lacey all our lives and there’s a good reason for that. They tragically lost their CF son – their only child – Peter in 1974, aged only 24. Back then this was an unexpected age to reach considering the life expectancy of CF sufferers. As context, when I was born in 1971, I wasn’t expected to live much beyond 17…

Ken and Betty were realistic about Peter’s chances but realised that he shouldn’t be wrapped up in cotton wool. Instead he was encouraged to make the most of what life he was likely to have. When he was in his early twenties he bought a hearse car along with some college friends and they drove it on the Continent and had a wonderful time. The irony of driving around in a funeral car is certainly not lost on me.

Peter was very artistic and attended Art College and his paintings were shrined on the walls and cabinets of Betty and Ken’s homes. Those paintings were always there to remind them.

Peter was treated at Great Ormond Street Hospital (GOSH) in London, curiously at the same time that my mum was being trained there as a nurse, though we don’t think their paths crossed. He also was an inpatient at Tadworth Court, the country branch of GOSH. My mum trained there as well.

My parents met Ken and Betty at a local Hampshire CF meeting in May 1972 when Betty was the Secretary and Ken the Treasurer, positions they held for a while before my mum took up the post of Honorary Secretary in 1975.
In 1982 Ken and mum even went to Claridges, London, to meet HRH Princess Alexandra who was and still is, the CF Trust Patron.

They were a key part of the Hampshire CF fundraising committee and attendees at a plethora of events, often organised by my parents. From CF stalls at the Southampton Show, the balloon festival, tennis clubhouses, people’s homes and gardens, Ken and Betty were omnipresent. Ken took people’s entrance money at many of these events; a mantle that was passed to my dad overtime before his heart breaking demise due to Motor Neurone Disease just over a year ago. Betty would help out with the ‘bring and buy’ stall or serve refreshments.

In fact for over 30 years they were for many people synonymous with CF fundraising in Hampshire. They could have dipped out following the death of their son but they stayed loyal and dependable. I was always there and so were they.
So when that text came through and I read that one of my biggest supporters had perished, I did feel terribly upset, even though his failing health meant I hadn’t seen him in a few years. As a father myself I pondered on how rough it would have been for them to lose their one and only child at such an early age and that being that.

I believe that they viewed me as a pseudo grandson, making frequent visits to our house and always remembering my birthdays. They were extremely thrilled when I married Katie and when we had our son Felix. They must have felt pride and joy in all my life achievements and milestones. But that must have been twinned with gut-wrenching pangs of grief for their own boy who didn’t live nearly long enough to work full time, buy a house, marry or have children.

At 24 I was not long out of University, getting into work, playing my hockey and having more fun than is reasonably possible. I cannot conceive how awful it would have been for them to lose Peter at such a fledgling age.

Peter, who I never formally knew, is one of many sadly deceased CF sufferers who are hard-wired into my conscience, binding my soul with the fortitude and hope to carry on with my relentless fight for survival.

They lost their boy but found another one to make a difference for. I was always there to remind Ken and Betty of the cherished son they had and they were always there as extra grandparents for me and as willing helpers to raise money to treat my illness. I will always be grateful for their care and devotion. Love always…

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

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 9,000 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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