Last weekend I participated in another guideline meeting, in Athens, Greece.
I am incredibly passionate about spreading awareness of getting people involved with Patient Partnering (also known as Patient and Public Involvement, Patient Advocacy, Patient Participation, Patient Representation depending on the organisation). It’s such vital and valuable work.
It’s on a voluntary basis, which feels nice in itself, patient partnering something is I feel very strongly about. If you have the lived experience of something you can make a huge difference to healthcare professionals and researchers in subjects they only have a limited understanding about on a personal level.
Having cancer made me feel incredibly vulnerable and traumatised. I lived in fear at the time, and in all honesty a lot of that fear remains to this day, long after the disease has been eradicated.
I live two lives side by side, in one I am scared of another encounter with cancer, or any other disease come to that, and one where I am fearless and full of hope and confidence. They run parallel at all times.
So finding Patients Partnering has been invaluable to me, and my self confidence and worth.
I feel like I’m doing something productive and positive for future patients. I’m taking something so horrifically awful and using that experience to help make life better for those coming through it after me.
I would encourage anyone who has had a similar experience with health issues to get involved with research and development.
It has given me a sense of peace and comfort, and I actively encourage everyone who can to try it and see.
An important thing to remember is that it’s not about getting help for yourself, it’s about giving back, and paying it forward.
As a Patient Partner I give my time to share my experiences and thoughts, rather than wanting something for myself. It’s about improving systems to help future patients.
And that is a powerful positive force, just being there, having a voice at the table, giving my lived experience perspective is incredibly fulfilling…and who knows, maybe it’ll earn me karmic brownie points. 🤩😂
I joined the Guideline Committee four years ago now for my very first meeting with them, and then last year I joined EAES, and became a member of the Guideline Committee as their permanent Patient Partner.
My role is to provide assistance to meetings, and also to recruit people with the relevant experience for various other meetings held throughout the year.
When I went to that very first meeting in Athens four years ago my assumption was that I was there to tick a box, and that I’d be expected to sit quietly in the corner, but nothing could be further from the truth. I am actively encouraged to voice my opinion, it is literally what I am there for.
I know I am incredibly lucky to be part of such a prestigious community. And I am incredibly grateful that I have been welcomed so warmly, I do actually feel like part of the team, and I’ve made some really wonderful friends along the way.
Life has a funny way of surprising you doesn’t it. Who knew that one day, I could use something so awful for such a great purpose.
With me the committee gets someone who has had cancer, and therefore the experience that brings with it, but I am also the mother of a child who had cancer, and the daughter of a parent who had cancer.
I’m a triple threat, a trifecta. 🤩😂
(Unenviably so, I appreciate).
I currently volunteer for EAES, but I have been involved with many and various other groups and organisations in the past doing this kind of patient feedback.
I’m really very lucky because I don’t have a job I am able to give my time freely, and any additional costs which arise are covered by my generous benefactor (or Chris as I usually call him).
*(For our committee guests their flights are paid for, as is the hotel.
The meal and drinks on Friday night are paid for, as is breakfast, lunch and dinner on the Saturday, and Breakfast Sunday is paid for.
There could be additional expenses of course, a lunch or two and food on the flights, but for the most part it’s a paid for event, and out of pocket expenses are minimal)*
Without Chris pushing me and encouraging me I’d have never gone to the very first meeting.
Bear in mind that I was contacted by a man I didn’t know, who direct messaged me on Twitter and invited me to a meeting…and I said “yeah, go on then”.
I mean what’s the worst that could happen?! 🫣😳😂…
(Numerous serial killer documentaries aside…what was the worst that could’ve happened?).
I was invited and intrigued, so I took a leap of faith that paid off…and let’s face it, anyone kidnapping me would drop me back home pretty quickly as I don’t shut up talking. :)
Patient Partnering is a relatively new concept, but one that has been welcomed with open arms and minds throughout the EAES.
This work (the voluntary kind) has given me a sense of purpose, I will be forever grateful to have been invited and included.
So, I headed off to Athens for the final guideline meeting of the year.
This one was a bit different for me as it was a subject matter I have no experience of, but I did some reading up on it before I went.
That said, I was an absolute nervous wreck about going to the meeting. A mixture of our friend dying, a fear of embarrassing myself, worrying about filling in the poxy brexit paperwork when I arrived in Athens, and meeting new people all built up into a giant ball of angst.
As with most things in life though, the reality was something quite different to my expectations.
Firstly, I didn’t have to do the Brexit paperwork, so that was handy. I’ll probably have to do it in a couple of weeks when we go to Paris, but at least Chris will be there, and I can go back to being one of life’s biggest passenger princesses.
And as for meeting the new people attending the meeting, well, they were utterly delightful, I mean really really lovely.
All of them were fabulous company, with great senses of humour too, I laughed so much throughout the weekend. What more could I ask for.
Travel outfit from a little boutique in Halstead, Shoes from Hermes.
The meeting takes place on a Saturday, but there is an introductory dinner on the Friday night.
The flight times from my local airport don’t tie up with the timings for the Friday night meal. So Chris very kindly treated me to a night in a hotel in Athens on the Thursday, which meant I could fly at a very pleasant 2.15pm, so no early morning rush for me - thank god - I am too old for 2 am starts.
I was so grateful to our other patient partner who joined us for this meeting, he put so much effort into coming. Leaving his house at midnight Thursday to catch the 6am flight Friday morning from Heathrow. That really is going above and beyond the call of duty. And I for one was very grateful to him (Seeing as it’s my role to recruit people).
Having arrived late on the Thursday I had a lovely meal looking out up to the Acropolis and Parthenon, a lovely sleep (well, as lovely as my sleep gets, I am a 15 year insomniac), and then I was up early Friday morning for some sightseeing and catching up with some of the other early arrival participants.
Top from Intimissimi, Trousers from Ralph Lauren, Shoes Hermes, Bag from Goyard.
Because I was up so bright and early (always) I had time to pop to the Intimissimi store in Athens.
I wanted to get a few more tops from them, they are fabulous. They are a very fine cashmere blend, they’re super soft and thin enough for layering. I feel claustrophobic if my layers are too thick, so these tops are a revelation.
And the reason I stock up on them in mainland Europe is because they are at least £20 cheaper than in the UK.
Then, slowly but surely the other members of the team arrived in Athens, and I spent a very pleasant day wandering around with them. Eating and drinking.
I was able to pass on my passion for Greek specialties (mainly Portokalópita - orange cake/pie).
I’m not a huge fan of English food in general. I think we do have some nice savoury recipes, but nothing ground breaking for my tastebuds - but puddings and desserts - I feel this is where the Brits excel.
We really do have the absolute best of the best ~ jam roly poly, spotted dick, suet syrup sponge, sticky toffee pudding, treacle tart, all topped with custard - gallons and gallons of custard - Unbeatable!
But, Portokalópita does join the hallowed ranks of delicious desserts, along with kheer (the Indian rice pudding dish).
(The only other typically English food I enjoy? Well we do do the best afternoon teas in the world. I have tried them in various countries but ours are leaders in the field.
I had perfectly pleasant one in The Taj Mahal Palace hotel in Mumbai, and an absolute rotten stinker in The Plaza hotel in New York (never again!), but an English afternoon tea in an English hotel is top tier.
I also very much enjoy a nice Sunday roast in a pub, or if Sam or Erin cook one, and I’ll make a shepherd’s pie (mine made with turkey mince) if we fancy a winter warmer. But other than that most of the food we eat is from some far off flavour infused land).
Shirt and trousers from Me & Em, Belt from Hermes, Boots from Selfridges.
I took my Me & Em gilet with me, but the weather was so nice I didn’t actually need it.
The introductory meal was really very nice. The food was fabulous, and the company more so. I have no idea why I was so panicked about going to this particular meeting (or maybe I panic before all of them and I just forget that I do by the time the next meeting comes around).
It’s a late night, so I was very grateful to Chris for paying for the Thursday night in Athens, so I was feeling fresher than I usually am going into a very packed weekend.
Saturday morning was another fairly early start.
I decided to wear my power suit. Does an unemployed, stay at home housewife from a village in Essex need a boss bitch power suit? Nope! It didn’t stop me buying or wearing one though.
We really do need to release ourselves from the shackles of other people’s views and opinions.
Dress codes are a human invention. Make your own rules.
Suit from Bella Freud x M&S collab, Top from Intimissimi.
The work takes time to get done. It’s an extremely full on long day. Another reason I’m grateful for the extra night in Athens because it gives me a better chance of rest before the big push.
There is always a really good cultural aspect to the meetings as well. I have been to the Acropolis of Athens many times and I adore it more each time.
I had read in the British press that the scaffolding had been removed for the first time in tens of years.
I have no idea where this came from, because there is indeed a lot of scaffolding still in place…
I had made promises to the group I couldn’t keep and I was cursing the whole British media for their misinformation…not that it’s going to come as a shock to anyone who’s ever read it. 🫣😂
So as well as having to apologise for stealing their marbles, I had to apologise exaggerating the whole scaffolding debacle.
(*If you get a chance please sign the petition to return the Greek marbles to their native land, they have a plinth in the museum waiting for them. To us, seeing them in the British Museum they are very pretty, and interesting objects. To the people of Greece they are like a piece of their heart is missing).
One of my co-committee members told me about Lord Byron, the English nobleman who gave his time, life and fortune to fight for Greek independence. I admit, I’m not very well read (I don’t think reading Jackie Collins or Sydney Sheldon books classes one as being the well read type), so it was really interesting to Google him and find out more about his work and life. Maybe I am descended from Byron, rather than the Elgin’s of the world.
I do believe that is scaffolding!!
How could anyone fail to be blown away by the Parthenon? It is an incredible place. How were they so evolved and knowledgeable? It’s a mesmerising experience to see it, and I’ve seen it many times.
Then it’s back to the meeting room to get stuck into the work again.
This group of incredible people were a pleasure to watch and work alongside. I feel incredibly privileged to be part of it, even if it’s in a small way.
They are all so talented, and more than anything I always admire their dedication, professionalism and their respectful temperaments, even when views differ.
It’s a fascinating process to watch.
Huge thank you to them for welcoming me in to what used to be a closed circuit, and huge thanks to Ian, our patient partner at this meeting for coming along.
Once the meeting is concluded it’s back out to dinner to celebrate a job done well.
As I’ve mentioned before I am trying to learn the Greek language.
Which is very bizarre of me, because I have dyslexia, therefore the English language is a bit of a struggle as it is, so adding in a different language, complete with a different alphabet is a strange choice, but I am really enjoying it.
I ordered my drink in full Greek with competency, I’m assuming, as I got what I asked for.
I turned to Stavros to tell him I have been attempting to make Greek food at home. My tzatziki was given a rave review by one of my darling Greek Cypriot friends.
So I branched out and made Gigantes Plaki.
I was telling Stavros about it and how delicious it was.
He said “I’m sorry Suzanne, but I don’t know what that is?”
…And I said jokingly said “call yourself Greek? It’s a butter bean dish in a rich tomato based sauce”
To which his eyes lit up and he laughed out loud.
…and this why I need a Greek teacher, because Duolingo is doing me dirty.
…Because I’d only ever seen it written down before, and my grasp of the language is limited.
I was pronouncing it Gigantes (like you’d pronounce the word giant in English). But there is no G sound in Greek.
It’s γίγαντες πλακί - with a Y sound. But I’m from Essex and we have our own special ways. 🫣😂😂
It reminded me of a time when Chris and I and our friends were in a very quaint restaurant up a mountain in Spain and we were sharing loads of dishes, we asked for a plate from the waiter. And he replied “what is Playyyyyyyyta” in the most Essex of Essex accents, which we found hilarious and mortifying in equal measure. 🫣🤩😂
So my Greek needs work as much as my Spanish, or French, or Italian come to that.
It cracked me up when I realised my mistake, Stavros apologised for laughing at me, but I said that it was absolutely fine because all my friendships are based on mutual taking the piss out of each other, it’s a sign of true friendship. 🤩😂
…Excuse me while I sit and eat my GiGantes Plaki on a playyyyyta 😂
Chris just reminded me of the time I read an entire book (no, that’s not the punchline, I read a lot of books). All the way through the book the protagonists name was really bugging me, it was a great story, but her name was giving me the ick.
All the way through I’d been reading Persephone as Percy-phone. And it seemed like such a ludicrous name…which indeed, Percy-Phone would be.
It was only when I was at dinner with some friends and I mentioned the name, that my friend stopped, looked at me and said “do you think it might be pronounced Perrr-seff-o’knee…
That it dawned on me that I had spent the week reading her name completely wrong! 🫣😂.
My grasp of words isn’t the best I am the first to admit. 🤩😂
Once the meeting was complete it was time to head home. I usually take a car service or cab, but I decided I needed more immersion time, and besides, Ian had very kindly sent me the train timetable so I thought I’d give it a go.
Only to get trapped on the train for 45 extra minutes, because the airport went into lockdown due to president Zelenskyy’s arrival. Or at least, that’s what the rumour on the train was. It spread through the carriage like wind in a tunnel.
Anyway, I made it to my flight in time and home to…frost and ice, but glorious sunshine, turning later in the week to icy sleety, snowy rain, I think I’d have preferred to stay in Greece.
A slight shock compared to the balmy 22 degrees of Athens.
Outfit from River Island, it’s so buttery soft and stretchy it’s perfect for travelling with a stoma.
My type of stoma is a colostomy, which in my case is ridiculously easy to live with. I find it easier than when I had fully working bowels.
I appreciate this isn’t everyone’s experience.
If you have looser output and you are fretful about travel, it might be worth trying the firming agents, like Morform, to see if that helps.
First thing Monday morning I was up early to spend a very pleasant day with my baby son.
He had taken the day off work and asked if I fancied a day out in London, and obviously I did, because I always do.
Top from Intimissimi, Jeans from M&S, Shoes from Hermes, Bag from Dior.
We decided to go to one of our favourite places. The Natural History Museum, the building is spectacular, and the contents are far less problematic than some.
They’ve revamped the outside of the museum and it’s absolutely stunning!
Good to see Dippy back, even if it’s not the original one.
No trip to The Natural History Museum at Christmas time is complete without a visit to see the T Rex in his Christmas jumper…absolutely accurate representation of what T rex would have worn this time of year. ;)
Then we headed to Harrods, because, well, just, because.
Then off to M&S at Marble Arch for more jeans. I feel like I buy new jeans every week…probably because I do. I am always searching for the perfect jean to wear with a stoma. I have some that are good, but I want the elusive perfection.
This coat from Marella in Harrods was utterly dreamy. Perfect for cold but bright days. Sadly it’s mostly rainy here so I won’t be able to wear it much I imagine.
I’d look like a damp dog in the rain.
We continued our sightseeing mission.
Then finished the day with curry at Dishoom.
Now this, this is my food of choice…
I popped into a Pop Mart on the off chance they had some Labubu in stock. Which they did, loads in fact, so that’s that rampant trend done.
Hopefully I won’t have to give this one to Zak. 😂
Welcome Soybean 🩶
Ben very much enjoys walking…
It was an exhausting day, Ben prefers to walk everywhere, even though we have a fabulous underground 🚊 system. We walked far, but it was actually very enjoyable.
We walked from The Natural History Museum, to Harrods, all round Harrods shopping, bought a few things, then we walked to Marble Arch, then all down Oxford Street to Carnaby Street, then on to Euston mainline station to meet Erin off the train from her weekend in Liverpool.
I loved spending the day with my baby boy. For me the pinnacle of success is if an adult child chooses to spend time with you.
I was however glad to just chill out at home the next day because I was exhausted.
But Christmas waits for no man, and the decorating is taking shape…
There isn’t a room in a house that can’t be improved by Christmas decor.
The bedroom and the kitchen are complete…
Our house is a proper Christmas house. It’s gorgeous all year round, but it really comes into its own at Christmas.
If there’s a gap then a tree will fill it…
The top of the stairs was looking a bit gappy, so obviously I lugged an extremely heavy tree up there…a really good idea when you have two hernias and a stoma 🫣🤩😂
Plus the outside needed finishing off.
I don’t have many talents in this world, but I do grow very nice Christmas trees in my garden (backyard).
I buy the rooted ones, like the one at the top of my stairs, and after Christmas I plant them in the garden.
The one Chris has just cut down for outside was growing out there for about 7 years. It’s a slow process, but worth every second.
I have the tree Zak helped plant out on his first Christmas. I’m saving that for him to come and cut down, it will be perfect by next year.
She’s a beauty! ♥️
It’s all coming together very nicely.
We have one final adventure ahead, and then it’s time to hunker down and enjoy the festive season.
Keep well, stay safe. Much love xx
Please keep an eye on my socials and blog for future guideline meetings.
It’s so important to use something you have experienced to make life better for future generations.
The motto associated with Athena is "Quod obstat viae fit via," which translates from Latin to "When the obstacle becomes the way". This motto is attributed to the philosophical and strategic nature of the goddess, suggesting that obstacles can be overcome and turned into a path forward.
Be more Athena 🫶🏼