In the blink of an eye, a whole year has passed, and what a year it has been. Christmas this year has been very different, but what hasn’t changed is the love and gratitude I have for the people, experiences and opportunities in my life.

Happiness cannot be travelled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude.”

Be thankful each day

Be thankful for what you have. Your life, no matter how bad you think it is, is someone else’s fairytale.”

Life is incredibly hectic. Our days are consumed with endless meetings, things to do, and places to go. There just never seems to be a minute of downtime – which is great if you get bored easily, but not so great when you’re juggling one too many things! 2018 has certainly made me reflect on priorities – and despite being busier than ever, one priority which never falls from #1 is those around me who I love.

2018 Reflections39

Unfortunately, the misfortune of ill health continued into 2018. You can view health like money – you never really have a true idea of its value until you lose it. Chronic health conditions don’t seem to phase us anymore – we’re so used to dealing with new challenges, no one more than my mum. However, our world was shaken on Monday 2nd July, when my mum was diagnosed with pancreatic cancer. In the five months that followed, we fought for her survival – literally. I can’t begin to describe the physical and mental toll both the diagnosis and fight for treatment has taken on mum, dad and I. There’s no words to describe how it feels when people in trusted positions as healthcare professionals are quite happy to push you aside, ready for the scrapheap, despite there being glimmers of hope – which they quite happily snatched away. I couldn’t bare seeing my mum ‘giving up’ – enough was enough. I would go to any length to get mum the treatment she needed. Thankfully, with the support of the Patient Advice and Liaison Service (PALS), and a referral back to the surgical team, mum was given an operation date – some 168 days after diagnosis.

On Monday 17th December, mum underwent a laparoscopic distal pancreatectomy. It was the longest six hours of my life – but at 4.15 pm, I received a call from the surgeon, who said it had all gone to plan and that mum was in recovery – the words I’d been longing to hear. He went on to say that he had removed all of the tumour, and was pretty certain that it was nowhere else. Despite a few minor setbacks while in hospital, she was discharged on Friday 28th December, just in time for the New Year. It may have been one Christmas in hospital, but it was worth it for all of the Christmas Day’s we can enjoy together in the future. We were told it was major surgery, and there were significant risks, but as I jokingly told the surgeons, “You don’t know my mum.” She’s the strongest, most determined person. I knew she would beat this! I’ll be forever grateful to Mr Saurabh Jamdar and Professor Ajith Siriwardena who gave hope back to my mum, as well as the incredible people in theatre, critical care and on the hepatobiliary ward at Manchester Royal Infirmary who cared for mum. They were simply amazing.

Never take away someone’s hope, for that may be all that they have.”

Despite so many setbacks, I still believe that mum’s resilience, optimism and determined spirit helped to pull her through. There are still going to be tough days ahead as she recovers, but she is living proof that pancreatic cancer need not be the end. We have so much to do in raising awareness, seeking early diagnosis and timely treatment decisions made jointly between those living with cancer and healthcare professionals, and I’m going to be doing all I can in 2019 and beyond to help make sure that hope is never taken away from people, no matter how small that hope may be.

Make the most of life.”

2018 Reflections6

Christmas and New Year has always been a time of reflection for me, especially when I visit the cemeteries to show my respect and love for my grandparents and relatives who are no longer with us. They deserve our honour and respect for giving us life.

Seeing the world with loving eyes

The world is big and I want to have a good look at it before it gets dark.”

I’ve continued to accumulate those air miles in 2018 – visiting 31 cities across nine different countries! Not only have I had the opportunity to travel to nine different countries (as well as up and down the UK), but I’ve had the privilege of meeting and catching up with many wonderful people through what I do. Travel is certainly exhausting, especially when you’re juggling a lot of other things at the same time, but it’s got to be done. As this year has proven, life is too short. If I get an opportunity, I’ll take it!

Wherever you go, go with all your heart.”

Here a few pictures from my travels in 2018, featuring:

  • Austria: Vienna
  • Belgium: Brussels
  • France: Paris
  • Greece: Athens, Heraklion (Crete), Piraeus, Rhodes, Oia (Santorini), Thera (Santorini)
  • Ireland: Dublin
  • Malta: Attard, Balzan, Cirkewwa, Victoria (Gozo), Mdina, Mellieħa, Mosta, Rabat, Valletta
  • Romania: Brasov, Bucharest, Cluj-Napoca, Iași, Sibiu, Sighișoara, Turda
  • Netherlands: Amsterdam, Haarlem, Zaandam
  • Switzerland: Basel, Zurich

There’s also a few from my travels across the UK as well – sometimes you don’t have to go far to find beautiful places!

I am equally as excited for all of the places that I’ll be off to in 2019 too – the list of which keeps growing! I’ve already got a few different trips lined up, including Prague, Budapest, Madrid and Heraklion! I’ve also been inspired to take on the 30 countries by 30 challenge! I’ve ticked off 18 countries, so I’ve got to see another 12 before 2023… I’m sure I’ll have no problems!

Dare to live the life you’ve always wanted.”

My vocation

Last, but certainly not least, is what I can only describe as my vocation. Not just the PhD that I’m doing, because I thrive on being sleep deprived and thinking about research 24/7. Not just the advocacy activities that I do ‘on the side‘ because I can’t say no to getting involved in projects, conferences and initiatives left, right and centre. But, my vocation.

Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do.”

Everything I do with my ‘work’ hat on, whether that be the research that I’m doing for my PhD, or all of the other things that I’m involved with, is all part and parcel of what motivates and drives me each day – and it is the knowledge that all of this work is actively helping to make a small difference to the lives of young people, adults and families living with chronic diseases – today and tomorrow, that keeps me going.

People often ask how I manage to fit it all in, and sometimes I do wonder that myself – especially alongside my own health conditions, supporting family at home, travelling, and squeezing in a social life too! However, I can honestly say that I love my life – every minute of it, despite testing times. You’ve got to look for the positives, and you’ve got to keep going!

In 2018, I navigated through a lengthy ethics process for my PhD, moving into the best part of the project where I am now going out there and speaking to people about improving support for children with arthritis and their families. I recently spoke at our University of Leeds’ School of Healthcare Postgraduate Research Conference about my PhD project, and was thrilled to be awarded second place for my presentation. However, it’s also quite a daunting time now that I am in the third year of my PhD – where I’m already writing my thesis, and thinking about life after my PhD!

2018 was also a momentous year for me, when I decided to become a freelance consultant, establishing Collaboro Consulting! While I’m hoping to do more freelance and consultancy work towards the end of my PhD, I’ve had the privilege of working with some brilliant clients in 2018, across a variety of different health-related projects and initiatives, such as supporting the development of accessible research publications, and speaking invitations about patient engagement and involvement in research. I’m super excited for the opportunities that await in 2019!

That’s not to mention all of the courses, conferences and meetings that I’ve been to as well! There are far too many to mention, so here are some quick stats to give you a flavour of what I’ve been up to in 2018…

  • I’ve taken part in 20 courses;
  • I’ve worked on 17 research projects (plus other pieces of work);
  • I’ve participated in 26 conferences and health-related events;
  • I’ve joined 20 new research networks, organisations and/or committees;
  • I’ve hosted 3 tweet chats;
  • I’ve delivered 1 online course;
  • I’ve facilitated 9 workshops;
  • I’ve delivered lectures to child nursing and physiotherapy students;
  • I’ve published 14 pieces of research, including 4 journal articles, 1 book chapter, 1 magazine article, 2 editorial articles and 6 conference proceedings;
  • I’ve delivered 13 oral presentations;
  • I’ve published 5 pieces of digital media;
  • I’ve authored and/or have been mentioned in 29 external blogs, press releases and publications;
  • I’ve published 44 blog posts on my website!

I have continued to grow my website in 2018, though I have plenty more ideas for the year ahead, including blogging about my travels. In 2018, 11,399 people visited www.simonstones.com, attracting 16,743 views from 104 countries.

I was thrilled to be granted the distinction of Associate Fellow of The Royal Commonwealth Society earlier in 2018, for my commitment to promoting the values of the Commonwealth and working to improve the lives and prospects of Commonwealth citizens. I also became a member of the Market Research Society, American College of Rheumatology and Academy of Communication in Healthcare in 2018. Earlier in the year, I also co-ordinated #HealthTweetFeast as part of the Leeds Digital Festival, showcasing the work and digital capacity of the School of Healthcare at the University of Leeds.

I’ve continued as a trustee of Fibromyalgia Action UK, where I have been involved in a variety of activities, including planning international awareness activities and overseeing internal and external research opportunities and partnerships. I also officially became a trustee of RAiISE, as we became a charitable incorporated organisation on 15th November 2018. This year has been taken up with establishing RAiISE as an organisation and raising awareness of our mission, which involved a visit to the Department for Education with Sophie and Sammy Ainsworth in January 2018! 2019 presents us with lots of incredible opportunities to pilot our invisible illness support packs for schools, which we can’t wait to do.

If that wasn’t enough, I also joined the Board of two European organisations. I was elected Treasurer of the European Network of Fibromyalgia Associations (ENFA) during May 2018, and Board Member of the European Network for Children with Arthritis (ENCA) during September 2018.

I’ve continued to play an active role within the European League Against Rheumatism (EULAR) community. I was involved as a task force member responsible for organising the 21st EULAR Annual European Conference of People with Arthritis/Rheumatism in Europe (PARE) in Brussels during February 2018. I became a mentor to a group of rheumatology healthcare professionals and researchers ahead of the EULAR Congress in June 2018, and continued my work as a member of the Emerging EULAR Network (EMEUNET) of young rheumatologists and researchers, sitting on the social media subgroup once again. This year, this involved joint co-ordination of an online Twitter course. I’ve also continued as a Working Group member of EULAR Young PARE, though my time with Young PARE will soon come to an end as I step down in April 2019 after four wonderful years. I remain a member of the EULAR Study Group for Collaborative Research and the EULAR Patient Research Partner Network, where I have been appointed to five EULAR task forces during 2018 as a patient research partner in developing a variety of points to consider and recommendations related to rheumatic and musculoskeletal diseases.

I was honoured to once again join the judging panel responsible for selecting the UK essay that will be shortlisted for the Edgar Stene Prize 2019, and I’ve also been quite active in reviewing a variety of manuscripts for different journals in 2018, as well as conference abstracts submitted for presentation to the Cochrane Colloquium 2018. I’ve continued to be a patient insight partner with the newly formed Versus Arthritis, an integration of former organisations Arthritis Care and Arthritis Research UK. While I’ve not been as active in reviewing research applications in 2018, I have been involved in a variety of content, communication and policy pieces of work, as we unite to defy arthritis together.

In 2018, I was invited to join the Global Alliance for Musculoskeletal Health Paediatric Task Force, and was delighted to become a member of the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA) ACTion Council. Change was seen within industry with the launch of the first Im-Patient Conference as part of eyeforpharma’s Annual Patient Summit Europe, of which I was a member of the Steering Committee. I became a Time To Change Champion, and an alumni ambassador for The University of Manchester, and also became a member of the Grow MedTech Advisory Board, BRACE Rapid Evaluation Centre Health and Care Panel, and the INVOLVE Children and Young People’s Working Group.

Alongside the new additions, I’ve continued to work with all of the existing groups of which I am affiliated with! This includes the National Institute for Health Research (NIHR) as a patient research ambassador, The University of Manchester’s Centre for Musculoskeletal Research User Group as a virtual member, the European Young Person’s Advisory Group Network (eYPAGnet) and the International Children’s Advisory Network (iCAN), which included speaking at the 4th iCAN Research and Advocacy Summit in Edinburgh during July 2018. I’m also still involved with where my research and advocacy journey began in 2012, with the Paediatric Rheumatology Clinical Studies Group.

All of these wonderful opportunities are of course enriched by so many wonderful friends and family members along the way in 2018! There are far too many people to list, but you know who you are! Here are just a few of those people who I managed to grab a selfie with this year – but to all those people who I’ve met, learned from, worked with, or enjoyed a well deserved glass of wine with – thank you for being you. I value your friendship, knowledge, support, and most importantly, your time.

Energy and persistence conquer all things.”

One life – live it

As we enter a New Year, remind yourself of what’s important in your life. As this year has proven, life is too short to wake up in the morning with regrets. Love fiercely the people who treat you right, and forget about the ones who don’t. Believe that everything happens for a reason, and if you get a chance – take it. In the end, we only regret the chances we didn’t take.

Wishing you a happy, healthy and prosperous 2019!

2019

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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