So, I’m back from a most productive, important and enjoyable weekend in Greece for the EAES guideline committee that I sit on.
Honestly I’m on a bit of a high. My role is to bring on board other patient partners to participate in the various projects undertaken by the team, as well as participate in the meetings myself.
Did I know if I could accomplish what I had agreed I would? Nope. Did I hope that I could? Yep. Did I succeed? Hell yeah!!
I’m so grateful to be given the opportunity to be a part of such important work. I’m also incredibly grateful to Raphaela for taking a leap of faith and joining us for this meeting in Athens.
(It’s a situation that could feel intimidating for the patient partners, but the way I see it is we’re all going through the same thoughts and fears in life, no matter who we are we’ll have our own insecurities and problems. We’re all just humans trying to live our lives to the best of our ability. We all get similar high and lows, and ups and downs over the years. So people can’t really intimidate other people, or at least they shouldn’t. Life can humble you very quickly, so it’s best to live it with that in mind, and I think most people do).
This was my first EAES guideline committee meeting since I took on the role of recruiting other Patient Partners to join us.
I was very nervous that I wouldn’t be able to do the job, I have very little experience and zero confidence, but I do have a very happy go lucky nature, so I thought I’d give it a shot.
I mean, really, what’s the worst that could happen?
We had the best team in attendance and had a fantastic meeting. A total success, thanks to Raphaela joining us. I will be forever grateful to her for being my first participant, and I look forward to working with many more people in the future.
Huge thanks to the other committee members for their warmth, encouragement, enthusiasm for patient involvement, and support.
The patient partner is no longer just a box ticking exercise.
I would say it can be a bit of a struggle for the lay person to understand the importance of having patient perspective involved in guideline development, but actually it’s quite new to the medical profession too.
I have been part of Patient Involvement over the years with many and various different medical charities. I have very much enjoyed my experience with all of them. But there is something extra special about being part of EAES guidelines. It’s difficult to explain why it’s so important, but it feels so groundbreaking to be involved with it.
I’ve been attending meetings with this association for the last three years and I can say that when I come home I feel incredibly blessed to be a part of it, we’re making a difference.
Basically, our role as patient partner is to give our personal opinion and experience to help shape the guidelines from a patient’s perspective. Although it is worth noting we cannot give patient perspective in the collective sense, only from our own personal experiences.
We do not represent patients as a whole. How could we? We are just individuals who have our own personal lived experience.
I am a very positive stoma owner, I feel stomas are better than arseholes, that’s been my experience and is my opinion. Others in a similar position to me may well feel very differently about their own situation. So it’s important to make it clear our opinions are just that of an individual, rather than representative of all other stoma owners.
I had my life enhanced by my colostomy. I have travelled extensively - solely due to it. I always say ‘Have bag, will travel’ and for me personally that is true. I have been all over the world since I had my stoma. I fly somewhere wonderful pretty much every month. Compare that to the eight years prior to my diagnosis, whilst I was in the grip of horrendous symptoms, due to misdiagnosis (IBS & Piles it was not), where I barely went out much at all ~ choosing to stay home and not to risk accidents. Too scared to live fully and freely.
Actually compare that to completely whole people who don’t have bowel issues, do you see many of them getting out in the world as much as I do?
My life became bolder, better and brighter after I had my stoma. I appreciate this isn’t the experience of everyone with a stoma.
I think it helps that I have high levels of resilience and adaptability…and a very healthy dose of sheer bloody mindedness that makes me determined to have a fabulous life with the time I have left here…which hopefully will be another 50 years or so. ;)
Also I refuse to accept the narrative of what society has conditioned us to feel as stoma users. I’m not going at accept that it’s a negative thing, not when my experience has been one of sheer joy…and a voyage of discovery finding out what I am actually capable of.
Six months after my surgery I was laying on a beach in Cuba in my bikini, bag on show…and 15 years later that’s still exactly what I’m doing, though the location changes.
I also believe that my son Sam being diagnosed with stage 3 Nasopharyngeal cancer, six months before my diagnosis, helped me deal with my situation better. There is nothing that compares with seeing your child ill, and go through hell, so I think I felt that what I was going through wasn’t as big an issue after that. Don’t get me wrong, initially I had a really rough time, APR surgery and an oophrectomy are pretty tough to recover from. But nothing really compared to the terror and agony of having a sick child.
I very much appreciate and respect that others might have a complete opposite view to mine. We all deal with it in our own way. No one is right, no one is wrong. It’s just our own experience at the end of the day, no one can tell us how to feel or live it.
A patient voice at the table during guideline creation and updates is vital to the successful treatment and wellbeing of future patients. It’s a newish concept, but one I believe will be more widely adopted, and deemed normal in the future.
Doctors and surgeons know their part very well, incredibly well actually (these particular people are leaders in their professions. I have met titans of colorectal surgery, the rock stars of their fields, which has been a huge honour for me), but what they lack is the lived personal perspective of the patient going through it.
Stavros and his team on the guidelines committee are incredibly passionate about Patient Involvement, if not pioneering the addition, he is most definitely leading the way in this regard for his team.
(I have spoken to many surgeons throughout my trips who have told me they are equally interested in the addition of the patient voice, and that it is a fairly new practice.
In the field of research too.
I have been invited to be a speaker about Patient Involvement experience of research at the EAES conference this year for the Masterclass MC1 EAES research talent academy, which is incredibly exciting and ridiculously nerve racking.
Having never spoken in public before it will be challenging…but as I always say, what’s the worst that could happen…actually, don’t answer that! 🫣😬
It will do two things though, 1) it will give researchers access to a living breathing human to ask questions of, and hear about my thoughts on Patient Involvement, which is incredibly useful, and I enjoy being useful. And 2) it will fill up my time table a bit, as I am there in Serbia for 5 days. And my meeting with the guidelines committee only takes up 3 or 4 hours of that).
I will add that the surgeons, statisticians and methodologists I have met over the years are the most humble, openly supportive and receptive people. Not once have I come across any of them to be egotistical, god complex types. I think it can be a common assumption that they might be.
I’m sure there are many who are like that, but not members of the community that I have had the good fortune to meet.
These medical professionals are so dedicated and passionate about helping their patients achieve the very highest standards possible they give their time and expertise to projects like this one to make patients lives better.
I am in awe of them, and I feel incredibly privileged to be a small part of it.
This weekend’s meeting was fascinating and fantastic;
“The EAES Rapid Recommendation Update 2025 on TaTME for Rectal Cancer is underway in Athens! IIi Experts from EAES, ESCP, and ESGAR have come together to review the latest evidence and shape future guidelines for safer and more effective surgical practices”.
Sounds baffling to us muggles and mortals doesn’t it. But that’s the whole point of us being there at the table. To listen to the statements, evidence and testimony put forward, and to give our thoughts on how to make sure that best practice is achieved from our perspective, while they improve it from their knowledge of the technical side.
It works very well. And as I have said every time I return from a meeting, our feelings, and feedback is listened to.
The first time I went I will admit I was incredibly overwhelmed and nervous, and at times zoned out a little. That was until Stavros (the lead on these projects) turned to me and said “so what do you think Suzanne?”
And I thought “oh shit! They actually do want the patient to have a say!!”
Needless to say I haven’t zoned out since. I am always listening and digesting the information. It can still be a little overwhelming to take it all in. I am not an academic (in fact I couldn’t be further from it actually, I’m dyslexic…and awaiting an assessment for ADHD and ASD. And although many people with those attributes are incredibly academic - I am unfortunately not one of them).
But they have never once minded simplifying it when I need clarification on certain aspects.
Like I said they are so warm, respectful and receptive to doing things a new way with the mission to produce the best results possible.
I brought Raphaela on board to this meeting. We hadn’t ever met in real life before. So it was really lovely to meet in the flesh. I came across her via my fabulous dietitian friend Sophie Medlin.
Raphaela hosts a radio show podcast, and Sophie very kindly suggested to Raphaela that I go on the podcast, which I did, you may have caught that interview on Health Radio last summer.
Then late last year I put a call out on my social media for someone to join me on this project in Athens this weekend. And Raphaela answered my prayers. Actually there were many layers to those answered prayers.
Stavros asked me to find someone from the wider European community, understandably you wouldn’t want the participants to be UK centric (they have me repping for the UK after all).
But rather serendipitously Raphaela is actually German, who moved to South Africa, and then back to Germany and then to the UK, she’s a citizen of the world. :)
Also, as it turns out, the person I brought on for our meeting in May is from another European country, and now resides in the UK.
I inadvertently achieved everything I was asked to do, albeit by accident, I’m not claiming a win entirely here, but I am happy.
So what does being part of the project look like?
Well, very early on Friday I left home for the airport at 2.30am.
I flew from Gatwick to Athens, where I met up with Raphaela, who flew in from Heathrow. We then hopped on the metro and headed to the city centre.
If you are ever going to Athens, and I’d very much recommend that you do, it’s stunning, I suggest using the metro.
It’s a half hourly service, to the centre of Athens, it takes about 40 minutes, and it costs 9€, so I don’t really think it’s worth travelling any other way.
Jumper from Ralph Lauren, faux blouse from Temu, Vest from Intimissini, Trousers from H&M, Shoes from Louis Vuitton.
Coat from Max Mara, Bag from Dior.
Souvlaki and the city 🥰
If you’re wondering why it looks so cold, it’s because it is.
I’m a very ignorant English person, I had no idea it gets particularly cold in Greece. But it was freezing. So much so we had a flurry of snow when we visited the Acropolis. 🥶
The Intimissimi cashmere long sleeve vests Chris bought me the other day were a god send. 10/10 would recommend 👌🏼
The social program is as exceptional as the work itself.
We met up on Friday night for dinner, looking out over to the Acropolis.
It’s a time for people to gel and get to know each other. Although most of them do know each other, so for them it’s a time to catch up.
The dining is always a delight, Greek food is heaven. Greece is heaven. I’m currently learning Greek because I come here so much I feel it’s only right.
I try and learn “Hello, Goodbye & thank you” in the languages of the countries I visit. Enough to be polite is a very good start. I’m practicing my Greek and Serbian for this year.
I had never been to Greece until October 2021, but I have been 10 times since. By the end of this year I will have been three more times.
Four trips to Greece a year is the bare minimum I’d want to do. It’s so beautiful, the food is so good, the people are so friendly, like, ridiculously so. I have never felt more supported and encouraged by any other nation than I do in Greece.
As I said, I’m learning Greek, but as I have some learning issues with the English language, I’m finding it very difficult. But I haven’t given up and I’m on a 221 day streak on Duolingo.
I will persevere - having hyper-fixations does come in handy sometimes. But it will be a very slow process for me.
I absolutely loved that when I did try to speak what I have learned so far, my Greek friends applauded me and celebrated my win. So it might be worth never becoming fluent so I always get the benefit of being clapped for being so clever!! A very rare experience for me! I’ve got to be completely transparent here, I really enjoy the praise. :)
I liked being celebrated like I’m a performing monkey. 😂
I can now order some food, alcohol free beer, and new to this visit my friend Iro taught me how to order a hot chocolate. So I’m pretty much sorted for future visits.
Top from M&S, Trousers from Ralph Lauren, Shoes from Chanel.
Who wouldn’t fall in love with this view.
I’m glad I repacked my suitcase. Originally I was going with my spring/summer clothes. But I thought to check the weather forecast just before I went and realised that I had made a foolish mistake.
I still went ahead with the spray tan I had booked in preparation for the trip, but I ditched the shorts and bikinis.
The morning session was very interesting and productive. Progress was made. It’s a lot to take in.
And then it’s lunch time, and time for the cultural excursion, so the people gathered have time to think about what they heard, and digest the information.
Jumper and trousers from Bella Freud X M&S, vest from Intimissimi
Darling that she is, Pat very kindly gave me her spare set of hand warmers, and I was very grateful for them.
Pat is a huge advocate for women supporting women in the workplace, but as it turns out, on small mountains too 😂
If anyone wants to ask Raphaela about her experience drop her a line at Stoma4life on instagram.
I have asked her to give me some feedback on my involvement with her experience this weekend. My role isn’t just to recruit others, I feel it is to be there as support for them throughout their time with us.
As Raphaela is the first person to come through the process I want her give me some honest feedback so I can improve the experience for future patient partners.
There will be more projects to get involved with next year and I will be needing new people to join us for them…preferably from European countries.
(Good English is required, as the meetings are held only in English).
I don’t know the exact details yet but do keep an eye out on my social media and blog. You really could make a difference.
It was cold, windy, snowy and incredibly beautiful up there. I’ve been many times now, and I have loved it more each time.
We always have such a fabulous tour guide, who does a great job of bringing history to life.
…as an English person I feel compelled to explain to them I would most definitely return their marbles to them. I feel that maybe every museum, in every country should return everything back to where it came from, unless they can clearly show they were purchased fair and square.
The British Museum has always been something of a misnomer to me. Have you ever been there? It should probably be called the museum in Britain.
I signed the Change.org petition for the return of the marbles a while back. It’s the least I can do if I’m going to visit where they came from so much.
It blows my mind when I’m there, (or anywhere where the English have stolen artefacts from) the sheer level of arrogance and madness you must have to look at the marble decoration on somewhere like the Acropolis, that have stood there for three thousand years, and think to yourself “Oh they’re smashing, they’d look a treat on my wall at home!”
Ffs
Lunch was served at the hotel on this trip, which did make heading back into the meeting after lunch a lot easier than it was before.
The final session of the meeting was arduous, but was conducted with such class and professionalism, with differing opinions being put forward but with the greatest respect for each other. It is fascinating to watch and be a part of.
Once completed it was time to head out for the farewell dinner.
This time we visited a very quaint Greek restaurant with a homestyle feel. The food was fantastic. It was such a fabulous evening and felt so relaxed. The hard work was complete.
The food on these trip has always been amazing. God I love tzatziki, I could live on that and pitta forever, maybe I’d alternate between that and dhal and breads.
Top and Jeans from M&S, Shoes and bag from Dior.
I am so grateful to Raphaela for being our first patient partner. She was fabulous, and so beneficial to the project.
It’s an incredibly daunting task. I’ve been doing it for years, and I still get nervous. But as she will attest herself, it is so rewarding and satisfying.
I headed to the hotel for a final night late drink with the others. They are such a great group of people. I always feel welcome.
Then in the morning I went up to breakfast at the rooftop restaurant to meet up with some of the group.
Being here in these meetings is such an intense experience that I feel I’ve known them for years.
As I had breakfast, Iro taught me how to order a hot chocolate (something I need to do daily because it’s become an addiction/fixation)…and not being able to order one was making me antsy.
Then I headed back to my room to finish packing to head home. And this is where I mortified myself, honestly I keep cracking up about it.
I fucked up my first solo attempt at speaking Greek in the wild.
A man said to me that he loved my outfit. And I replied very confidently, and a tinge smugly - ‘παρακαλώ’.
He looked a bit confused, but I thought it was because he was so surprised by my fabulous Greek.
…it was some time later it dawned on me what I’d actually said.
Cringe 😬 utterly cringe
I said ‘please’….
He said I love your outfit and I replied “please!”.
God loves a trier 😂
Jumper from Bella Freud X M&S, Trousers from Micheal Kors, Shoes from Louis Vuitton
Apart from that faux pas I came back from Athens on a high. Feeling really really good.
…and then at the airport Chris made my day even more…he called me a dick head, which made me piss myself laughing.
He turned up to collect me from arrivals with a beautiful bunch of flowers, and his even more beautiful face…
…and I said very clearly and loudly “Oh my god, thank you so much, I wasn’t sure if I’d actually recognise you but you look exactly like your photos!!!”
And you should have seen all the nosy bastards staring - getting engrossed in our blossoming online romance.
He’s a lucky man, he married one woman and gets seven different other personalities for free! Haha.
And I’m lucky because I’ve never met anyone in my life who lifts me up more and gives me the confidence and courage to try anything.
Everything is because of you CD. Xx
Monday brought me back down to earth, I was absolutely exhausted, I don’t sleep well at the best of times, but very intense meetings, fun late nights out, and travel wipes me out. I’m an old granny remember.
It’s a bit embarrassing to admit I was shattered - the medical professionals all headed home and straight back into work, and there’s me a bit tired at my yoga class. 😬
I was really tired, but yoga really helped. It was a very enjoyable session. And afterwards I ask Camilla who runs it to take some photos of me for my blog.
Which she did, but also there’s a lovely young man who also attends who offered to take a photo of me. Which was very sweet of him. I knew he works as a model, and marketing.
He is a sweetheart.
Anyway, I posted the photo he took on my Instagram story, I tagged him to give him photo credit, seemed rude not to.
…the next thing I know he’s reposted it on my his Stories! Hahahah…I nearly spat my hot chocolate out laughing.
He has nearly 500 thousand followers, and he reshared my post.
So his Stories went ~ photo of him, photo of him, photo of him…photo of a random plump grandma, photo of him…
What a darling man, but I was very happy, it was such a kind gesture. One that I greatly appreciated.
Yoga wear from Tesco
Once yoga was over, I came home to a budgie, well two of them, but only one seemed to have missed me so much that as soon as I opened the cage door he flew into my arms and wouldn’t get off. I was walking around with a budgie stuck to me for hours.
I don’t know if it’s possible for budgies to love humans, but he definitely seems to!
He cracks me up and melts my heart. Getting them was a very good idea.
I never for a minute thought budgies would be this much fun. I’ve only had these two since last September. And they have really solved the issue I had that I got a tiny bit lonely in the day times sometimes.
If something needs fixing, fix it. No one else is coming to save you, you have to be your own hero.
*I appreciate I have descended into mad budgie lady a lot sooner than you’d expect, but I’m loving it. 💙🩵
It’s been a whirlwind of time over the weekend, I’ve had so much fun. I feel like I’m part of something special. And I feel incredibly proud to be part of it.
Thanks for dropping by, Have a fantastic week ahead. Stay well, keep safe xx 😘
Xx
For more information about EAES please visit the website, link below;