Nine things I’d love to tell my 20-something self

Tim at 20

Tim, Katie and Felix 2017

What life lessons would you share with your younger self? Here, I tell my 20-something self some important things about life and coping with the chronic illness cystic fibrosis (CF)*…

Over 46 years, I have learnt so many physical and mental lessons – what works (and doesn’t need fixing), what made me feel shockingly unwell (and not to be repeated) and how best to adapt to situations to become the best version of myself.

1. Give your lungs as hard a time as they give you!
Your physio’s will have been going on at you about this forever but it took me years to see for myself that it really is important for keeping your lungs tuned. Make exercise one of your treatments. I’d tell myself that a large part of your longevity in the battle to defy CF will be credited to the sports you will choose to take part in throughout your life, whether it be hockey, football, basketball, running or weight training in the gym.

Activity will keep you going; feeling like you’re conducting a relatively normal life and boost your self-esteem. It will breathe life into your lungs.

2. Be spontaneous, but…
Throughout your life you’ll realise it’s important to 100% respect your illness, know your limitations and avoid slipping on the ‘CF banana skin’ of trying to dismiss it and not taking it seriously enough. Though sometimes it may be difficult, you’ll laugh a lot and be sociable with your peers, without neglecting your treatments.

3. It might not be business as usual, but you can earn a living…
At your age, CF seemed like a barrier to my career, but I want you to know that the resilience shown by surviving CF is an asset for you in the workplace. That resilience is life changing and positively wipes out the less important things you’ll observe others wasting valuable time on.

You’ll realise that you have a richer perspective on the work issues that are worth worrying about due to your ‘CF bigger picture’. You’ll be surprised to find yourself considered a valued employee and employers buying into your survival and being flexible about your healthcare needs. As CF is not well understood, you’ll have to coach your managers about the condition but once they value your work, they’ll be pretty flexible with your hospital visits and IV courses.

4. You don’t want to be with someone that doesn’t want to be with you…
Telling close friends or a partner about CF can be difficult, but you’ll get good at working out who the people who don’t ‘get’ CF are, and learn to spot people who can deal with the sights and sounds of the condition. It won’t always be easy, but I want you to know you’ll find friendships and a love that will endure.

5. You will see all your tomorrows in your child’s eyes…
I can still see myself as a young man chatting with mum on the pier in Weston-Super-Mare, telling her that I didn’t think I’d have my own children. I’d tell him not to give up – the emotional rollercoaster of IVF will bring a miracle child into your life and starting a family will give you the extra motivation you need to stay as healthy as possible.

6. Let it all out…
I’d share the knowledge that cystic fibrosis can be so isolating and lonely that you’ll need to open up in order to reduce the burden of carrying this condition.

Talking with friends on the phone or opening up via a diary or blog is cathartic and stops the build-up of harmful supressed emotions. Get your feelings down on paper, even if you’re the only one who will see it. Perhaps write pro’s and con’s about your life – you’ll be surprised how many positives there are!

7. Please don’t be so hard on yourself about taking your medications…
It took me time to realise, so I’d tell myself that staying fit and healthy doesn’t rely on a begrudging compliance to taking medication, it needs something more – an absolute commitment to your wellbeing. Actually ‘wanting’, rather than ‘having’, to be healthy will feel empowering.

I’d tell myself “Do your medication even when no one is watching. Experiment with different apps, reminders and routines to see what’s best for you.” It is important to develop habits with taking medicines as quickly as possible so it’s ingrained. Don’t wait for friends and family to nag you. In the long run, it’s better to own it; my mantra is “I’m only as healthy as my last treatment”.

8. The quality of your thoughts determines the quality of your life.
After a lifetime battling a relentless illness, you’ll learn to fight it by being just as relentless back. Yes, you’ll be shaken every day in many ways, but you will not be stirred!

I’d reassure my 20-something self that he will be his own CF champion, resetting mentally at the start of every day by telling himself what he needs to achieve, despite cystic fibrosis and related diabetes.

9. It’s all worth it!
Remember to reward yourself and celebrate your determination and bravery to endure every day what is not yet cured. As you get older you’ll start to feel very driven and want to leave a lasting legacy for your family and friends to remember you by like a book. Surviving CF for so long makes every day feel special.

Most importantly, because of the attitude and resilience you show to defy your physical and mental challenges, life will offer you the opportunity to make a difference for yourself and others. Make every moment count.

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 10,500 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.

A Song for Tomorrow

Tim with a copy of ‘A Song for Tomorrow’ in Waterstones, London

People with the chronic illness cystic fibrosis* (CF) definitely know that nothing is forever… here’s why…

 

A book has recently been published which lifts the veil on Alice Martineau, a CF heroine and brilliant singer and songwriter who has been a shining beacon for so many for what she achieved despite her health.

Alice was born the year after me and would have been approaching her 45^th birthday in June. I didn’t directly know Alice but would know her better than most because of being the same ‘CF vintage’. We would also share a mutual battle with CF and a disdain for being called ‘brave’ while feeling a heightened desire to make every moment count.

Alice’s life reinforces the sentiment of Nietzsche that the person who has a ‘why’ to live can bear any ‘how’.

The book, ‘A Song for Tomorrow’, reveals Alice’s path to recording and securing a music deal with Sony for her album ‘Daydreams’ while featuring her songs ‘If I fall’ and ‘Inside of You’. Sadly the album was released only a few months before her premature death. The prose is underpinned by unconditional love – both with her family and her boyfriend.

‘People born with a weakness to fall are born with the strength to rise’ Rupi Kaur

The book uncannily depicts the highs, lows, hopes and frustrations of a CF life as well as my own memoir.

It also highlights what it feels like to have the chronic condition not just for the sufferer but for those around that person who equally immerse themselves in the CF rollercoaster ride. It also doesn’t hide away from sharing the bigotry and unkindness that CF people have to endure on a regular basis from ignorant strangers.

This book will make readers laugh and cry in equal amounts. It is poignant, thought-provoking, grounding and life-affirming. Importantly, it will increase the knowledge and understanding of the illness to a wider population; which from my daily experience is extremely helpful.

Both my mum Margaret and I met with the author of this fine book. Alice Peterson, a charming lady and exceptional story-teller, used our CF insights and the testimonies of others to fashion an epic book which fuses Alice’s life and fiction. Indeed, there’s an indirect reference to me in the book and my mum and I are kindly referenced in the Acknowledgements section.

Requiem for Alice

Everyone involved in this book – from Alice’s family, to my fellow CFers, to the publisher Simon & Schuster and especially to Alice Peterson – should be immensely proud of what they’ve created.

I believe that when you read this, and I strongly encourage you to, you’ll be delighted that you’ve got a tomorrow to look forward to. This is a Story for Today; A Song for Tomorrow…

 

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?’)

View ‘A Song for Tomorrow’ book and Alice Martineau’s ‘Daydreams’ album

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

The Good, the Bad and the Ugly

The Good, the Bad and the Ugly neatly sums up the last few months in my battle with the chronic illness cystic fibrosis (CF)*…

The Good
Felix, my sprightly nine year old son, has started playing field hockey. He’s been attending Sunday coaching at a local Surrey hockey club with his best friend Jude. Last Sunday, he played in his first Under 10 tournament against other clubs and got heavily involved both in defence and attack, pulling off many tackles and scoring a few goals to boot! That same day was the birthday of his deceased Grandpa (my dad who loved his hockey) and I hope he would have had a grandstand view of his grandson keeping the Wotton hockey tradition going!

I feel the utmost pride watching Felix play and clearly enjoying the sport which I hold so dearly to my own health survival and life passage. I’m motivated to sustain my health and fitness so that I can join him on the pitch.

The Bad
These last few months have seen me recover from a hernia operation which was likely caused by so many years of coughing – the most common side-effect of CF. It was a day surgery at St George’s Hospital in London, where my wife Katie works as a pre-op assessment nurse specialist. Katie dropped me off at the day surgery, saw her patients and then picked me up once I could walk again following my operation. The irony of the procedure was that the hernia didn’t hurt before the operation, but boy was it sore for a long time afterwards… especially when I coughed!

Katie was a wonderful nurse to me in the hours, days and weeks post operation as I went from walking like Bambi to gently walking to going back to the gym for moderate exercise. Playing hockey is still some way off but I’m getting there slowly but surely.

The Ugly
A new drug, Orkambi by Vertex, that corrects the underlying cause of CF is showing tangible evidence that it can slow the irreversible decline in lung function and transform lives for half the CF population.
Most of my current arsenal of antibiotics help prevent infections settling in while other drugs help to loosen the mucus in my lungs, but I have never taken any therapy that tackles the fundamental problem.

Why isn’t this news in the ‘Good’ column of this article I hear you ask? The ugly side of this new drug is that it’s not available on the NHS after it was rejected by funding bodies in England and Scotland.

Yes it is costly and there could be side-effects but I have spoken to CF friends who have trialled it and they have definitely benefited from taking it, whether it be coughing less, more lung function, increased energy, reduction in hospital visits or raised BMI.

A key element of mindfulness is the ability to put oneself in the shoes of another person. Well I ask you to put yourselves in the shoes of myself and thousands of fellow-CF patients across the UK and Europe.
We know this drug is available; we know that there’s heartening evidence that it could dramatically improve our health BUT it’s not being funded for us. Talk about a tantalising carrot being dangled in front of us.

Alongside the CF Trust, I am helping to campaign for Orkambi to be made accessible for the UK CF population. Please sign this online petition to help get this drug over the line. Let’s make some noise!

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?’)

For more information on the drug Orkambi, the BBC article below has a wonderful story of a 15 year old CF girl whose life has been transformed since she’s been on it…
http://www.bbc.co.uk/news/health-37806218

* 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.

Miss List

What are the top 5 things you’ll miss when you’re gone and how can you enjoy them before it’s too late?

Capture the moment: John Brett’s stunning painting of the ocean

Recent events in the world have left me rather dazed. From the shocking terrorist attacks in France, Belgium, Turkey and the US, to the out-of-the-blue earthquake in Italy, to the early deaths of cystic fibrosis (CF)* friends around the world, to hearing of the terminal illnesses of our friends’ loved ones, the sad death of my friend Rowena Kincaid, to chatting to a dear friend who tragically lost her husband early in their marriage.

 

This has made me reflect on the poor people afflicted and the knock-on effect on all their extended family and friends. It also reminded me that we don’t know and can’t predict the year, month, day, hour and minute that we will die ourselves.

It’s left me feeling ever more convinced by my desire to live every day like’s it my last – this has mainly been forged by a lifetime of surviving the chronic illness CF and Type 1 Diabetes and its daily challenges and extensive medication.

I’ve pondered upon the elixir of life and have distilled the main things which I would miss when my time is up. I reference them below with recent examples of how I appreciate them ‘in the moment’ so I will hopefully have less regrets.

Tim’s Miss List:

1. Partner / Children (Wife and Son)
– Pleasurable meal with my wife Katie in our favourite restaurant in Wimbledon Village (The Lighthouse) and the ubiquitous Face Book selfie!
– The pride of watching my son Felix get up from a fall on his bike and carry on cycling.
– The drinks Katie and I shared in the late afternoon sun on the gorgeous lawn of a lovely East Sussex hotel to celebrate our 13th wedding anniversary.
– The one thing most children want the most from a parent is your ‘time’. I have enjoyed some precious times with Felix this summer. In particular, a game of Top Trumps ‘Piece of Cake!’ (comparing cakes from around the world) was not only fun but made us both desperate for some Victoria Sponge!

2. Family
– Being there with my wonderful mum for dinner on the eve of and morning of her June birthday.
– Every conversation (F2F, phone call or text) with my two brothers Chris and Jez. Especially sharing an Isle of Wight holiday memory and banter from our last family holiday about 30 years ago!
– Taking time out from our holiday in Greece to look out to sea and have a ‘catch-up chat’ with my late father, who I miss every day.

3. Friends
– Having some beers and laughing uncontrollably with my long-term hockey friends in the marquee at the Olympic Park in London while biblical rain halted the international hockey match we were supposed to be watching!
– Sending my most heart-felt wishes to Jerry Cahill, American CF legend, on the wonderful event of his 60th birthday.
– Putting into practice Maya Angelou’s wise counsel – “Be a rainbow in somebody’s cloud” – by helping friends and work colleagues in their hours of need.

4. Nature / Wildlife
– Being transfixed by two birds of prey majestically hovering overhead looking for lunch in my local park.
– Witnessing a sustained summer thunder and lightning storm (surely nature’s purest orchestra) from my bedroom window.
– Feeling hypnotised by the curious flights of fancy of a squadron of Swifts flying high to catch insects.
– Viewing a shaft of sunlight on the sea from the coastline in Lanzarote which looked like a gigantic green pond leaf in the middle of the ocean (see painting by John Brett of a similar image back in the 19th Century).

5. Contentment (Happiness / Joy of life / Living in the moment)
– Watching and celebrating with Felix England’s 3-0 series rugby union win over Australia!
– The last moments of sun on my face on a warm day before the pure relaxation of an evening drink and dinner.
– The sheer elation of having an invigorating session at the gym!
– The smell and glow of the local milieu while going for a jog following a rain shower on a sunny day!
– Combing my gorgeous ginger cat Charlie on our garden lawn. A mutual win-win; I find it therapeutic and he’s in ecstasy!

Living the list
I hope my Miss List and examples have been of interest. Do you have a similar list or something different? Do you ‘live your list’ rather than leave it too late?

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?’)

This blog is dedicated to the beautiful and effervescent Rowena Kincaid, who I met in 2015 when she interviewed me for her BBC documentary about Bucket Lists. Two hours in her sparkling company lasted a lifetime – I won’t forget you dear Rowie. Rest in Peace.

* 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.

Unlimited

Gandhi encouraged us to be the change we want to see. My mindset towards battling the chronic illness cystic fibrosis (CF)* has been improved by two extra letters…

A Life Unlimited by CF

Certain words or descriptions can drag you down before you’re day even starts. They can chain you to a health-related jail, leaving you to be vanquished by the ravages of your condition.

Once such word for people with CF is ‘limited’ – a life with CF and its daily grind of 2-3 hours of medication, physiotherapy, nebulisers and constant coughing can be a life limiting illness. Keeping on top of everything to stay alive forces you to have many limitations in your daily life.

But by adding two letters, this word is transformed from negative to positive and at the same time acts as a springboard for change in one’s mindset.
I choose to add the two letters ‘U’ and ‘N’ to the word to give me unlimited and hence a ‘life unlimited’.

A recently launched campaign by the UK CF Trust is fighting for a life unlimited by CF for everyone affected by the condition. In essence, this means being able to breathe freely, having the same social, education and work opportunities as everyone else and living life to the full.

I fully support this worthy mission and encourage you to watch the video below to know more.

Limitless
Here are aspects of my life – which help me to be the change I want to see – which are also unlimited:
• Love for my family (Katie, Felix, my mum, brothers, parents-in-law) and friends
• Desire and motivation to keep on top of my extensive CF and diabetic treatments
• Impetus to keep exercising (gym, jogs and occasional games of field hockey)
• Appetite to campaign for new transformational drugs to be made available to people with CF (like Orkambi from Vertex)
• Passion to keep challenging authorities and governments to change the donor system in the UK so more donor organs are available to save lives
• Strength to mentally fight back every day against the damage inflicted by my conditions (latest side effect is that 45 years of coughing has caused a hernia which I need to get operated on). My new moto has become: ‘If I can take it, I can make it!’
• Supply of rubbish jokes for every occasion (the 2016 vintage are some of the best yet – be warned)
• Need to keep smiling and laugh whatever is going on. I agree with Mark Twain: “The best way to cheer yourself up is to cheer somebody else up!”
• Willingness to keep sharing my survival story, strategies and life insights to help others and if possible, offer hope to people where none exists
• Appreciating each and every day as if it’s my last and cherishing as many ‘special moments’ along the way

Small changes – adding two letters to a word – have made a big difference. What letters could change the meaning of words to help transform your life?

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?’)

View the short and poignant Life Unlimited video by the CF Trust

Another unlimited act is taking place this Sunday 24th April, when my long-term hockey friend Mark Tubb is running the London Marathon for CF. Please sponsor him 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.

Year of Firsts

Here, I list my ‘year of firsts’ as I battle the chronic illness cystic fibrosis (CF)*. Not the habitual festive top 10 list, but memories to store forever…

Winning my book award at People’s Book Prize

Tis the season to be jolly.

Tis also the season where we are submerged in a sea of people’s top 10 lists for the year.

As I close out another year it felt liberating and heartening to plot each month of 2015 for something I did or was involved with for the first time ever in my life.

Memories are all that we get to keep from our experience of living. In my intense desire of securing memories that last a lifetime and define a life well-lived, every day I search for key moments and activities that feed this insatiable hunger. Here is my list of firsts for 2015:

January – I was filmed on the London Eye sharing my views on ‘bucket lists’ with terminally ill Rowena Kincaid for a BBC TV documentary ‘Before I kick the bucket’ (Look out for the 1 hour documentary early in 2016).
February – I played in an English Hockey Association Veterans Cup for my old team Trojans (including my brother Chris and long-term friends) against tournament favourites East Grinstead, who field two former Olympians. We gave them a good run for their money but eventually lost 3-1.
March – I met in a London hotel with one of living heroes – the active and fit Jerry Cahill, my US-based CF mentor and legend who is nearly 60. He recorded a podcast of my story being a father to Felix despite the challenges of CF.
April – I ate lunch at ‘Rules’ the oldest restaurant in London (it’s been serving traditional British cuisine since 1789 and some of the staff looked like they were as old as the establishment) with my relative Gilbert Hall. It was a wonderful experience, but I did have to send back the potatoes as they were rather hard! Tut tut.
April – This memory deserves a second one. While in Sharm el Sheikh in Egypt, Felix and I had our first ride on a camel called ‘Maradona’. The animal was not in a good mood and had the same beady eyes and fixed stare of the Argentinian footballer of the same name!
May – My CF memoir ‘How have I cheated death?’ won a precious accolade – the Best Achievement award at the UK People’s Book Prize; a black tie event at Stationers’ Hall in London. A double-first was seeing if I could deliver my winning speech to Sky News cameras after consuming a bottle of wine during the dinner!
June – Going to see one of childhood heroes, (Jim Dale from the Carry On films) with my twin brother, Jez, in his amazing one-man singing and dancing show at a London theatre. A very special night all round.
July – My short documentary about surviving CF (which was shot in our house and features Katie and Felix) was aired by Brazilian station Record TV (with Brazilian Portuguese voiceover) on the popular Sunday evening programme ‘Domingo Espetacular’. View it on You Tube – we all look great!
August – During our family holiday in Portugal, on our final day by the beach, I went for one of my customary walks on the wet sand by the surf. One thing led to another and before I knew it, a brisk walk turned into an interval jog which lasted for over 30 minutes. My lung function for most of the summer was reduced and exercise had been particularly hard. This unexpected run on the beach was like a miraculous oasis of calm and boosted my self-esteem more than any healthy person could ever imagine. It would easily fill every slot of my top 10 list of 2015 positive happenings!
September – For the first time in 19 months, I needed some time off for one of intensive intravenous (IV) treatments. I hadn’t gone 19 months without an IV since my early teens. So it was negative that I needed an IV but it’s important to look at the silver linings when your health is low. This mindset really helped to sustain me in the days of suffering during the 3 weeks of IV’s.
October – I had the results back from my annual CF and diabetes health review. I had reversed the severity of my bone density and osteoporosis due to my weights programme in the gym and taking my calcium supplements. A very pleasing turn-around!
November – After more than 30 years of playing field hockey, I finally received some kit and stick sponsorship from Gryphon UK. A wonderful motivation to keep playing a sport that has enabled my health to defy the grim odds set at birth.
December – My book was raffled off as part of a Christmas online offer by Genefo, who match CF patients to others that share their genetic mutation. One person said the following about my book, which makes sharing my story worthwhile:

“Your book and yourself is an inspiration, yet it’s also so much more than that. The resilience and sheer bloody mindedness of folk with CF shines through. You have an excellent writing voice that came across as genial and doggedly determined. Cheers for your gift of empowering us and the realisation that we are not slaves to CF but are able to break the chains of bondage and, with effort, have increased mastery and hope. As you say, until the cure is found.”

What a list! I’m constantly surprised and delighted that I’ve had the luck and privilege of being involved with so many firsts in my mid 40’s. This all happened against the usual backdrop of daily medication and loss of many CF friends and one dear school friend; which makes each memory more treasured.

I hope this has got you thinking. What would be on your list of firsts this year?

Have a wonderful Christmas and happy New Year!

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.

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

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.