This is going out unedited as the website keeps crashing.
I was off to Athens again for another guideline meeting for the European Association for Endoscopic Surgery last week. I was again flying through Stansted, and I was absolutely shitting myself about going back to the airport after the incident there a couple of weeks ago.
Once again I was travelling alone, and for me this is already a highly stressful situation, but thankfully I can report that I had a very positive experience.
I was flagged on the scanner again, this is perfectly normal because the machine is programmed to search for anomalies, and the layers of the bag are just that.
It’s not like the old fashioned metal detectors, this is a type of scan, it’s Ai. It searches for oddities…although if that was the case the whole of me would be illuminated like a human torch! :)
As I approached the female security officer I put my hands out in front of me and said
“Before you begin I want to make you aware that I have a colostomy, do you know what that is?”
I needed to be reassured she was paying attention to what I was saying.
She said “yes I do, because I also work in a hospital”.
I then explained my experience of 2 weeks ago before I would allow her to touch my body.
She was very kind, she conducted the search with professionalism, and care.
This should be the minimum we deserve.
It is worth noting, that this wasn’t due to her receiving training in the job here. This was just luck on my part, because she had experience with stomas in a hospital setting.
In this age of the new generation of scanners I think stoma users will get flagged up more regularly.
And that is not a problem if they are trained how to deal with the issue.
The horrendous experience of two weeks ago would not stop me flying, and I hope it wouldn’t for anyone else too.
But we will have to advocate for ourselves, and clearly state our position, and confirm that it has been heard and comprehended.
I have no problem with a professional pat down, and a swab test should it be required, after all I want to be as safe on a flight as possible.
But I don’t want to be injured in the process, I and was, I am still having a lot of discomfort in my stoma, so god knows what damage she did to me.
I have sent letters to the managing director of Stansted Airport and The CAA, because I strongly believe it won’t take much work for them to make the changes needed to prevent the incident that I had happening again.
I will advocate for myself and other stoma users to be treated with dignity and respect. It’s not that hard ~ train and explain.
I posted about my experience on my facebook and somehow, and I really don’t know how, it started getting likes and comments from strangers. I assumed only my friends would see it.
Anyway, they were all lovely and kind people, a lot of whom suggested I wear a sunflower lanyard.
I’m all for people finding some comfort and safety in them, I get it, it’s a great tool for people who want it, but I am not disabled in any way.
I had cancer, I have a colostomy, I shit in a bag, and other than that I am completely the same as everyone else.
I have no problem with articulating that I have a stoma, as long as the person I’m talking to is actually focusing on their job, and not away with the fairies.
So, no, for me personally the sunflower lanyard would not work.
I would however like airports to step up and do their bit.
Now the scanners are far more sophisticated, there needs to be an additional 10 minute training plan to make sure all security guards are aware that a stoma is going to show up, and a gentle pat down, and a swab if it’s felt needed, is all that it takes.
The choice should be given to the customer if a swab were to be required;
“Do you mind if I give your bag a quick swab here, or would you prefer the privacy of a cubicle? Please be reassured we will not require you to remove the bag from your body”.
It should be clear calm information.
And at no point should a security officer squeeze any lumps or bumps they find in the pat down.
A friend of mine made the point that if the security officer thought something was amiss, why on earth would she squeeze it?!
It’s a very good point.
Do we want a security pat down to involve squeezing anything found?
Does it seem like a sensible thing to do?
“How did the bomb go off!?”
“Well I found something suspicious - and I gave it a good squeeze to see if it would explode!?”
So rather than me, or other stoma users feeling anxious in an airport setting, good quality training is needed, asap.
Like I said, it would only take ten minutes, if that, to explain what it is and how to proceed with it.
I don’t believe I’m being bolshy or entitled to be treated with dignity, respect and care, and I shouldn’t have to rely on security guards working part time in a hospital for them to know what to do.
Top and matching cardigan from Me&Em, Trousers from The White Company, Shoes from Hermes, Bag from Louis Vuitton.
I wore this super soft, cosy outfit for flying in. My most favourite and preferred way to dress, is in a dress. It reduces the stress and risk of leaks. But a loose fitting trouser is also very reassuring.
I did notice, whilst looking through the photos that my bag was very clearly visible through these trousers. I think me of yesteryear would have freaked out, but I’m older and wiser and thought “who gives a ****!?”
I mean that literally, who cares what I’m wearing?
The answer is no one, everyone of us is already preoccupied by our own stuff going on to care what anyone else has.
I arrived on the Thursday so I’d give myself half a chance to get some good quality sleep. Only my body and brain didn’t feel like that was an agreeable option, and I had the least amount of sleep that I’ve had in years. So that was fun. I must have looked like a zombie most of the weekend.
I think one of the issues was I was very much homesick this time.
I’m okay usually, but it happened to fall that my entire family were spending the weekend at our house.
Sam got a flying lesson near ours for Christmas from Milly, and he had to reschedule it from a few weeks back as he ended up with pneumonia after a bout of flu.
So while I was in Athens, all my favourite people were having fun without me.
In fairness, they probably had more fun, because all the boys went off to Duxford air museum for a day out (and it’s not my favourite place to visit). Milly was out training for her upcoming triathlon.
So really, I would have been surplus to requirements anyway. But I still felt like I was missing out.
*My ideal meeting timings would be midweek, because Chris works long hours anyway, so I wouldn’t be missing out on much. But they tend to be on weekends for ease of people being able to participate.
T shirt and Cardigan from Maje, Trousers from Ralph Lauren, Shoes from Scarosso
Once again, I left the UK for what is usually considered sunnier climes, only to get there and find that it is actually colder than England 🫣
Athens is such a fabulous city, and a chill in the air didn’t detract from the experience.
I was meeting a couple of the other participants from the meeting, they very kindly invited me along to go sightseeing with them. Which I always appreciate. Sometimes it can be a bit dull to be sightseeing alone in a foreign land.
I’m pretty self contained as a person, but it’s nice to have a shared experience.
The view from Lycabettus Hill was incredible!! Athens is a huge city, and you can only really appreciate how big it is from higher ground.
The funicular was greatly appreciated by me as I was already struggling with the steps up to that point.
I am incredibly unfit as it transpires. Two jet lagged people made their way up as if they were gliding to the top.
In my defence, they are outdoorsy Canadians and I live in a very flat area.
I have started riding my bike to the local shops, instead of taking the cars. I think it’s safe to say that fuel costs are going to get wildly out of control.
I rode into my local town centre on Monday and two people (men actually, surprisingly, you’d think they’d not notice) said how lovely my bike was.
Bright and I decided to have some lunch, and we both wanted traditional Greek food.
We came across this fabulous little restaurant, I would definitely recommend if you’re in the area. It’s in the Meat Hall, the food was so good.
It’s full of local Athenians, and on this particular occasion, two tourists.
This dish is one I cook quite often at home. And this one was almost the same as mine, so I found that very satisfying that I am actually cooking it correctly 🥰
Then it was back to the hotel to get ready for the meet and greet dinner.
Dress from Zara, Shores from Fendi, Bag from LV
The social aspects of these events are fantastic! Maria, who organises everything is brilliant at finding really good spots.
Our first meal together was at a rooftop restaurant overlooking the Acropolis. It’s very beautiful at night.
Then it’s an early start for the day ahead.
Top and Jacket from Me and Em, Trousers from Ralph Lauren, Shoes from Hermes
I will not pretend that I am there because I know everything…in fact, some might argue that I’m in the room under false pretences…and that I know nothing.
That’s okay, I’m cool with that. I can only do what I can do. I’m not a paid professional. I am a volunteer patient partner giving my thoughts about how I think myself, and most patients would feel, or what they would prefer.
That’s it, that’s my remit, I can only give my opinion on that. Although I do try and consider the feelings of the wider community.
No two people are the same, for example, there are plenty of people who have stomas who feel they are disabled, or at a disadvantage because of it.
I, and others may not feel that way. But I would never diminish anyone else’s lived experience. Because we are different people who have different lives.
I absolutely love my role for the Guideline Committee for EAES. I do it gladly and with great enthusiasm, even if the statistical side of things melts my brain at times.
I was telling Chris that at least once a meeting, if not more, I must look like a rabbit in the headlights! 😳🫣😂
These people are some of life’s geniuses, they are titans in their field. They know all the smart stuff, and I’m there to give them the practical, patient side of life.
It’s okay to ask for things to be simplified in layman’s terms.
I would very much encourage everyone who has some sort of lived experience of any condition to get involved with patient partnering.
It is incredibly rewarding. And I have found it to be very well received by the medical community.
They know their bit, and we know ours, put those two things together and you have a powerful collaboration to share with the wider world.
Look out for opportunities with the association I am part of, I will be sharing more information about future projects.
But also I’d very much recommend googling Patient Partner/ advocacy/ involvement/ representation opportunities in general. It is a very useful use of your time and experience.
It’s a voluntary program, but most expense are covered. For example my flights, hotel, and food for the meeting days are covered.
I tend to pay out of pocket for extra nights in hotels because I don’t like early morning flights. That is my personal preference because I have sleep issues, but for those who don’t they could easily take part in the meetings with minimal personal cost.
I can honestly say that I have only had really positive interactions with the groups I have been involved with.
Stavros, who runs the committee, and the rest of the team have a very good track record of inviting really good open, welcoming people.
I always assumed surgeons might be a tad on the egotistical side (apologies for my preconceived assumptions - TV and film has a lot to answer for).
But the people I’ve met over the last 4 years have been an incredibly nice, enthusiastic bunch.
I have never felt less than, even though, let’s face it, I am far inferior academically to all of them.
I know it, they know it, but they are gracious enough to understand that is an irrelevance in this situation.
I’m not there to know the big stuff, that’s for them to deal with, I’m there to represent the average patient’s view.
We have a great social program as part of the meeting. A trip to the Acropolis is not to be missed, even though I’ve been up there many many times, I still very much enjoy the trip.
From there we head to a restaurant, for an incredible lunch, this is the first time the committee visited this one, although I have been before. It’s fantastic!
Melina Mercouri Café in Plaka
I had never stepped foot inside Greece until October 2021, and since then I have been to Greece fifteen times I think it is now.
What can I say, I get a bit fixated.
I knew not a single word of Greek the first time I went, and now I can order my own food and drink. So basically I can survive.
I am trying to further my education in Greek but as a dyslexic who struggles with the English language Greek has been a challenge.
Top from Intimissimi, Trousers from Me&Em, Shoes from Fendi.
The final night’s meal was in a new restaurant to us, and it was superb!! I have walked past it a few times before, but this was my first time in.
I’m going back to Athens in June so I’m definitely going to book to go there again. The food was amazing and I really want to try a chick pea stew again.
I am for the most part vegetarian, with an occasional bit of chicken and fish sneaking in.
I love cuisines that have strong vegetarian dishes. Which is why I prefer Indian, Greek, or Italian food to that of my own country.
Outfit from River Island.
I hitched a lift back to the airport by car, with one of the surgeons heading back to America.
Which was very handy for me as my hernias are playing up and I couldn’t face lifting my bags more than actually necessary.
Funnily enough this meeting was about hernias, so maybe mine were having a flare up in celebration of that! 🫣😂
Sam, Milly and Zak very kindly coincided making their way back home with my flight landing at Gatwick.
So Chris picked me up and we all met at a really very nice pub/restaurant near Gatwick for a Sunday roast.
It was so lovely of all of them to think of me. I really very much appreciated it. And I got to see the most beautiful human on the planet…my grandson Zak.
I was absolutely exhausted from the lack of sleep while I was away, you’d think I would be used to it, but this was far in excess of what poor sleep I usually have.
And I have gone down with another upper respiratory tract virus, so that’s fun.
In fairness, I travel an extraordinary amount. And travel is a very high risk factor for the giving and receiving of viruses 🦠
So far this year, bear in mind it’s still only March, I have been to Portugal, India, Spain and Greece.
I count myself lucky I didn’t go down with any lurgies while I’ve been actually on the trips themselves! Can you even imagine. 🫣🤒
He made this for me while I was away, so I’m going to frame it and put it on an art wall I’m working on.
Someone asked me while I was in Athens “What do you do?”
And it caught me off guard a bit because all I could think of was “This”.
All my time is free time, so me doing volunteer work isn’t so much noble, but a way to give myself a bit of a purpose.
People need purpose, and I found it in patient participation, and the Foodbank.
Top from Intimissimi, Jeans from M&S, Jacket from PDKF store in Jaipur, Shoes from Pretty Ballerina’s
Because without the charity stuff, it’s just me sitting home playing with my budgies. 😂
Top from Ralph Lauren, Jeans from M&S, Shoes from Gucci
Please please please if you can, look into Patient Involvement. Firstly it would really help me out when it comes to recruiting for our upcoming projects, but also I truly believe it is so important and worthwhile.
I can usually get someone to attend from the UK, we’re quite well versed in Patient Involvement groups, but what I really need is people from mainland Europe to get on board.
Having discussed this with quite a few surgeons from around Europe, they too struggle to get people to join in.
We need to normalise and promote having a patient perspective.
I have added the details of the association I’m involved with to give a clearer picture of what it is we do.
https://eaes.eu/about-eaes/committees/guidelines-committee/
…Do you remember that I bought a leghena in Delhi, well, I have absolutely no where to wear it…and as yet I haven’t been able to convince Chris that I’m owed an engagement party…although I am still working on it.
(Might start a petition)
So what to do with a lehenga with no occasion?
I’m thinking of styling it like this look below at some stage too.
…Look at me full of ideas, with no actual plan to be able to wear it.
…Anyway…I ordered a mannequin…as you do…
She may never get to live out her destiny in the outside world, but at least she is now displayed in all her glory!
Yes, I am aware I have too many clothes, it has been mentioned. But hyper fixations take their own course.
I am cutting back.
For example, I love Farm Rio clothing, but it is quite spenny.
And I found a perfect Farm Rio homage on Shein of all places.
I bought 2 dresses for under £25 so that’s good going, although I appreciate no one is going to be following me for sound financial advice.
Pretty things maybe, but 💰 advice? No.
Like I said, I’ve gone down with a really rotten cold, but today, today was a good day as I got up and showered, admittedly I got straight back into my pyjamas, but I am at least clean.
And I managed a bit of sunshine therapy to try and move this cold along.
For now, this is where I can be found…so glam right? 🤒🫣🤩😂🥰
