So this was a very interesting expedition.
I set off in the very early hours of the morning (2.15am) on Friday, to catch a flight to Athens for a meeting with EAES, the association I volunteer my assistance to, as a patient partner, giving my opinion from the patient’s lived experience.
It’s now widely accepted that having patient perspective and feedback is a valuable contribution to improving outcomes for academia, research and practice.
And I have very much enjoyed being part of this addition. It gives me a sense of purpose. Using a very unpleasant experience to help others in the future feels incredibly empowering.
It’s worth noting that nothing I’m involved with will be of benefit to me. I take part to help other people going forward.
I know a lot of survivors who feel the same way and want to give back through many and various organisations.
I headed to Greece for a consensus meeting with a view to keep, change or amend current practices for the rapid guideline update on CME for right hemicolectomy.
Sounds complicated? You would be correct. It was the hardest guideline I’ve been part of. There are so many different factors involved. All of which have equal importance to the patient.
Which is problematic in the extreme. Because if it’s all of equal importance, how do you prioritise importance? It’s an impossible task.
Short term increased risk - versus long term greater gains.
The only saving grace in this particular quest is the most significantly difficult part of the process, the patient would be unconscious for.
I headed off to the meeting feeling far more confident than past experiences, because this is my third meeting with EAES, and now I am on the panel, I felt a greater sense of belonging.
(The first time I went I assumed a terrible misunderstanding had occurred and I’d been invited by mistake. Which until the meeting got underway was a very real concern).
*About EAES
The European Association for Endoscopic Surgery (EAES) was founded in 1990 and since then has become a growing and dynamic organisation that continues to play a leading role in endoscopic surgery and allied interventional techniques. Aside from organising annual top level European congresses in a different European city every year, the EAES activities in education, training, research, development, and publication are effected through its various committees.
If you are interested in participating and attending similar programs please get in touch. I can wholeheartedly recommend using your survival and voice to help others in the future. It has given me a sense of peace to be able to pay it forward.
Some meetings can be attended via zoom, some are in person, with flights and accommodation covered.
All of it on a volunteer basis.
Because I was travelling alone I decided to get some paperwork in place to help me take all the necessary stoma supplies for the trip with me.
I contacted Gatwick airport security to ask what I needed to do to be able to take extra liquid allowance with me as a solo passenger. I heard from them to say that all medication is acceptable.
(Although the security team at the airport spent a lot of time reading through the paperwork, and conferring whether it was possible, and nosing through the medications bag, which that bit I guess is fair enough).
I had obtained a doctor’s letter from my GP to explain my need to take extra liquids.
I can send you the information in the documents should you wish to do the same. Just for a bit of a confidence boost at a somewhat nerve wracking moment through the airport.
It isn’t necessary to obtain a doctor’s letter. But I felt it gave me a better chance of getting through easily. I also printed out the email from Gatwick’s security team stating that it was fine to take extra liquid allowance.
*worth noting it might not be accepted on the return flight. As they have no obligation to accept it. But I used Google translate to change the language in the letters for Greek airport security.
Top from Ralph Lauren, Trousers from M&S, Shoes from Hermes, Bag from Chloe.
I arrived in Athens exhausted from my early start. But knowing that flights have been getting more and more delayed lately I didn’t want to risk the later flight.
I arrived at the accommodation, which was fabulously located in the center of Plaka, the old town of Athens, right by the Acropolis. I unpacked and headed out to find some lunch.
I saw a nice looking restaurant, sat down and ordered a zero alcohol beer, and then decided to read the restaurant reviews.
They weren’t great; small portions, sneaky over charging and not good quality.
I felt it was too late to stand up and walk away, mainly because it had taken all my bravery (no matter how tragic that sounds) to go out and dine alone as it was.
So I took the reviews into account when ordering.
I don’t know who wrote the reviews, or how big their bellies are, or if they’ve ever visited a city before, and paid city prices.
But the food was plentiful and delicious, and not anywhere near the colossal price I was now expecting to pay. All things are relative I guess.
I couldn’t eat it all. It was a lot of food. And reasonably priced too.
Completely stuffed full I headed out for a bit of solo sightseeing before it was time to get ready for the organised dinner event in the evening.
Athens is a wonderful city, this was my second trip, and it’s one of the safest feeling places I’ve ever visited. I think Seville and Athens are incredibly safe cities. And have a similar family oriented vibe.
I wore my accessories there, even by myself, even walking around alone at night, I felt very comfortable and confident, it doesn’t feel even a tiny bit robby or stabby.
I showered, changed my bag for the night out, at which point I accidentally sliced through the new bag whilst trying to cut it to apply.
I cut my bags at the point of use, as I narrowed down a pancaking issue I was having early on in my stoma journey, finding that the adhesive was lifting and drying out where it was attached to the protective layer when it was pre cut.
Unfortunately, cutting at the point of use means slicing accidents can happen. But it’s a very very rare occurrence. Surprisingly so, bearing in mind how clumsy I am.
Anyway, I didn’t think much of this particular incident, I just cut another bag and carried on getting ready to meet the group.
Is it nerve wracking to be meeting new people for the first time? You need to ask!?! Oh my lord it’s terrifying!
But the way I see it, what’s the worst that could happen?
Actually, don’t answer that. Hahahah
Anyway, the apartment I was staying in didn’t have a full length mirror, and I certainly wasn’t going to ask anyone in a group of people I’d never met before to take photos of me for my blog!
So I did the next best thing and found a shop with an available mirror.
Dress from The White Company, Shoes from Chloe, Bag from Jimmy Choo.
Because I’m a stress head, because I overthink, I decided to wait at the appointed time and place 15 minutes early, you know, just in case.
Anyway I was standing outside the apartment, merrily minding my own business, when an elderly man approached me. He was a bit bedraggled and appeared down on his luck.
He started talking to me, it was all a bit mumbled and with a strong accent, though what accent it was I have no clue, I heard him mention something about coffee.
At which point I assumed he was asking for spare change to buy one. I smiled kindly and explained that I didn’t have any loose change on me…
….at which point he moved closer and raised his voice and boldly exclaimed;
“Nooooooooo, I don’t need money! I have lots of money, lots of money to buy beautiful women coffee!!!’
And then as I was moving backwards away from him, realising that this man wasn’t in fact homeless, but worse than that, deranged, he kept moving towards me.
I kept very calm, thanked him for the offer and said no thanks.
Which in his mind translated to ~ try harder ~ with more insistence, more gusto, and in some strange segway, he imparted information about how he’d been to New York, and promptly showed me a key ring he’d bought from there. Things were by this point getting ridiculous and surreal.
Nothing angers me more than a man calling me beautiful!! I have eyes and mirrors (though not a full length one in the apartment), I’m a 51 year old grandmother, I know who and what I am…and here’s some old man calling me beautiful!? I call bullshit when I hear it.
“Sir, I respectfully ask you to step the fuck away!!”
Anyway he wouldn’t, this elderly lothario, wishing only to take ‘beautiful’ women to coffee, would not go away.
I couldn’t tell if he thought I was a working girl, or a vulnerable lonely woman on a Shirley Valentine style Greek vacation, both are equally unappealing in concept, both options pissed me right off. You’d think my face would have seen him off, my face never hides my feelings or emotions. It’s not even a resting bitch face at this point! It’s a very actively bitch face!
Unsure of what to do next, because it’s weird, having already explained I was meeting up with friends, he was persistent. I turned to walk further away, and he followed, but as I turned I saw the group of people I was meant to be meeting walking towards me. So I shouted my greetings to them…And funnily enough that’s when he took his call to leave.
Not when I asked him to, multiple times, but only when faced with a large group of people.
(If anyone is still unsure why women were choosing the bear on TikToks, over being alone in the woods with a man, it’s because unfortunately some men don’t know when to quit. Even bedraggled octogenarians! Ffs).
I did laugh afterwards, what was the whole key ring show and tell about? That was a new one on me. Hahahah.
Anyway, composure re-found, introductions made we all headed off to an amazing rooftop restaurant for a delicious traditional Greek meal.
Once that was done it was back to the apartment, to get ready for the meeting the next day.
I got lost on the way to the meeting location in the morning, it turns out I can’t follow a map on Google maps (who knew!?? Although I think we all just knew that would be the case!) ;)
I walked four thousand steps, sweating and panicked, until I saw a group of people walking in my direction, some distance away, some wearing suits, and although I couldn’t quite see them clearly, I took a guess that most tourists aren’t in business attire. And that it would be the rest of the group.
Me; Top from Ralph Lauren, Trousers from M&S, Shoes from Louis Vuitton.
The organiser was taking photos for the event, which was handy for me as I didn’t want to have to ask for outfit of the day photos, and the shop next door to the apartment with the big mirror was closed at the time I left for the meeting.
It was a really good group of people, with some new faces and some familiar.
It was such an interesting experience. It was very hard work.
Due to this, the day is broken up with a break for lunch and a trip to the Acropolis, thinking time is needed.
It’s such a well run event, so I’d like to thank Stavros for inviting me to join the team. And huge thanks and respect to Meropi and Maria for organising such a fantastic and flawless experience.
As well as thanks to the medical professionals who welcomed me so warmly.
The lunch at the Acropolis museum was fantastic! Would recommend!
And then it was back to the office to thrash out the rest of the plan, and conclude the meeting.
The evening is the last planned event. Which was drinks and then dinner in a local traditional restaurant.
Again I was mirror/photographer-less…
Dress from Nobody’s Child, Shoes from Chloe, Bag from Jimmy Choo.
So it was back next door to use his mirror.
The meal was delicious, the company was wonderful. This felt the most difficult consensus meeting I’ve attended, but so so friendly, with great people from all over the world.
It’s an honour to be present at a table, with a patient perspective voice, with such eminent doctors. I am so grateful to be part of the team.
I said my farewells, it was approaching midnight at this point, and walked through the quaint cobbled streets, until I bumped into a very cute guy!!
…My own one this time, as Chris flew to Athens to meet me once the meeting was done, to spend some time together in a city I’ve visited before, but he hadn’t. I really wanted him to come and see for himself how cool it is.
Normal service can resume, my photographer arrived!
Dress from TK Maxx, Shoes from Hermes, Bag from Chloe, Hat from Lock and Co.
A very nice German couple we got chatting to in a bar complimented my hat.
The man said “that is a very fine looking hat!”
I said “thank you, I bought it in a shop in London, Lock and Co”
And he said “oh!…on St. James Street next to the wine merchants, over the road from Chutney Mary!!”
So that took me by surprise! He knew the shop very well…and has decided to buy himself one next time he’s there.
…so it’s not just stoma dressing I’m influencing for these days! Any hat advice, I’m here for you. I’ve got you! :)
Chris and I have the Superfino Montecristi Panamas.
It feels dreamy on, and apparently the quality shows, enough for a couple to comment on it.
Chris now gets why I love Athens so much. He loved it too!
If you’ve not been it’s a must see. So much ancient history. It’s fascinating.
We checked out of the apartment, and into a hotel Chris had booked. Which turned out to be sensational! The roof top pool, with a view of the Acropolis is going to be hard to beat.
Swimsuit from M&S outlet.
I tried to get some fruit in because I had been gorging on all the incredible Greek food I could get my hands on.
We booked in for a massage and then headed out for dinner.
Usually I would shower after a massage, but I had a deep moisture mask put on after the massage, and the therapist advised to leave it on.
So I put my hair up and we headed out to dinner.
On the walk to the restaurant I commented to Chris that my underwear felt peculiar. I didn’t think much of it at the time.
It was only once we were sat down in the restaurant where I tried to adjust my undies, did I realise that I hadn’t actually changed out of the disposable paper thong I was given to wear for the massage!!
I’m now sitting in a very fine restaurant…in paper underwear!!! I nearly passed with embarrassment, or rather, embarrassment potential…what if they just disintegrated while I was out and about.
The fear was real hahahaha. I have a habit of getting myself into ridiculous pickles.
Chris and I couldn’t stop laughing. I am very thankful they held out until I made it back to the hotel after dinner. 😬
If only wearing disposable knickers was the biggest error of judgement I had made for this trip!
I made a huge error in my stoma bag calculations before I came here.
Usually I overpack bags, due to one ski holiday where I had to restrict my activities because I wouldn’t have had enough bags if I had carried on the rate I was getting through them.
Usually I change my bags every 24 hours. But that does change with what I get up to in a day.
It wasn’t a major issue on that particular holiday, just slightly frustrating that I couldn’t swim as often as I’d like.
I find that once I have been swimming, or getting wet via any means, the filter is done and a metallic/iron/slightly poopy smell emits from it.
So on that holiday I had enough bags to use them sparingly, but not enough to swim to my hearts content.
I thought that was bad enough, because it interfered with my regular holiday routine and enjoyment.
But I have excelled myself this trip. Because I made a monumental fuck up on my calculations for supplies before I came.
I think I’ve worked out what I did;
When packing my suitcase, because I was travelling alone to start with, but Chris was following me later, I packed for the first 3 days of the trip in my case.
I didn’t take into consideration the rest of the holiday’s needs.
I packed my dresses for the Chris part of the holiday in Chris’s suitcase, for him to bring with him. And I think that must have been where it all went so wrong, because although I put my clothes in his case, I didn’t add the extra bags I’d need to it.
Plus add to that some very freak incidents occurred, including the clumsily cutting through a bag whilst cutting it to put on.
I noticed too late that my bags were getting on the low side. Having changed it twice a day for the first 2 days, and wasting a bag I’d sliced through.
Realising that I was running out I decided to empty my bag;
Quick explanation of my stoma usage; I have a low down colostomy. My output is firm/thick toothpaste consistency usually.
Even though this is my normal, and not conducive to emptying a drainable stoma bag, I do in fact use drainable bags, because I have this weird feeling of claustrophobia in closed “colostomy” stoma bags.
I choose to wear ileostomy stoma bags (usually used for the more liquid output of ileostomy users, which is empty-able), because I have always worried that should I ever get diarrhoea I’d be trapped in a closed bag, which is what made me start using drainable bags, way back when I first had my surgery.
Plus I had a drainable bag on when I first came round from my AP resection, so I think my brain saw the benefits and practicalities from day one.
Why would I have a fixation on diarrhoea? Well, life experiences leading to my eventual diagnosis really. Having diarrhoea was common place pre diagnosis.
It must have ingrained itself into my brain to always fear it, always be prepared for it, even if my normal output is not one that can be emptied from a stoma bag.
The other reason I choose drainable, for a non drainable content, is because now that I can eat whatever I like now, I get a lot of ballooning of my bag because in general the foods I love cause wind.
I love daal, and hummus and fava, and lots of other high fibre delicious foods.
Using a drainable bag means I can eat all that to my hearts content, I just take myself off to open the bag and empty the air out that often balloons the bag up. It works for me.
…So in an attempt to claw back at least one bag from my quickly dwindling supply, having already earlier on on the trip wasted a bag by cutting into it, I thought it would be a good idea to empty it.
Which is quite doable when I’m on holiday because I am usually on the constipated side to varying degrees, which means the contents of the bag are of a consistency to be emptied. I can just tip the contents of my bag down the loo.
Unfortunately, and this is the freakiest of freak accidents, because although I have done this many times before, on many occasions, as I pulled the bag to open the Velcro the bag itself ripped! Never in the history of my stoma owning has this ever happened.
Two things, firstly I was shocked it occurred, and second, shit shit shit! Literally! I needed to conserve bags and this now meant I’d be cutting it fine for stock for the rest of our stay.
Panic ensued, huge overwhelming panic. But also, a bit of sadness that I now wouldn’t be able to do the things I had planned to for the rest of the holiday.
The plan; sightseeing in the morning to mid afternoon. Rest by, and in the hotel pool for the rest of the day.
That wasn’t possible now. Not only that, but I was dangerously close to not having enough bags to make it through the holiday at all.
I couldn’t risk attempting to empty the bag’s contents again for fear it’d rip again, although unlikely, it wasn’t a risk I could afford.
The final day, which was to be a very long day, as our flight home wasn’t until 9.30pm was spent absolutely quaking in my boots. I had 1 final bag left, 1 bag that if anything odd and unusual occurred it’d be game over and I’d be stinking all the way back to Blighty.
I’m not embarrassed or ashamed to say I spiralled out of my mind. I think anyone in this situation would. Although it’s debatable whether anyone else would have packed so few bags to start with.
Usually I’m such a stress head over packer!! It’s unfathomable to me that I caused this problem.
It’s a huge fear of mine to be without a plentiful supply. So what in the world was I thinking about?!?
That one final remaining bag carried so much hope for me.
The one I had on was being worshipped and prayed to as if it were some ancient demigod.
To some this may sound overly dramatic. But I would guess that those people aren’t bothered by the usual conventions of society, and be unfazed by smelling of poo.
One on, and one spare has never ever happened before. And I can say with certainty and confidence I don’t ever want to go through this again.
Can you imagine that one final bag failing?
I would have had to board a plane stinking, absolutely stinking of shit. It would be an unimaginable hell for me and for an entire plane load of people…the emotional havoc with embarrassment would have been unbearable.
And it would probably make it onto social media and into the papers, like that poor soul who suffered the explosive diarrhoea on that flight a few months back. It makes me shudder thinking about how they must have felt knowing the world knows what happened to them on a what was probably the worst day of their lives.
Just the fact that it was now a very vivid possibility for me was enough for me to feel incredibly insecure and vulnerable, when usually I’m the most happy content colostomy user you could hope to meet.
I laughed and joked my way through it. I don’t have any other coping mechanisms in place. I got on with my holiday, and enjoyed the sights. All while being overwhelmed with fear and anxiety about the possibility of running completely out of bags.
It was not a wholly fun experience that’s for sure. The positives to come from this is it’s a wholly avoidable situation to be in.
Although I had fun, despite and in spite of it. But dear god I never want to be in that position again.
I still don’t quite know why I miscalculated my bag needs. But let’s just say I’ll be back to ridiculously overpacking in time for my next trip. Which is in 2 weeks time. I will have a suitcase full of bags!
What I’ll forget for that trip is anyone’s guess. But nappy sacks and hair brushes are far easier to replace than stoma bags.
In an attempt to get myself back on track I phoned the World Wide Stoma Bag Emergency line… who, although very kind and supportive, were unable to help due to the time constraints involved.
So I think it’s more of a predicament hotline, rather than the stated emergency hotline, but worth keeping a note of the phone number should a future predicament arise;
*Respond Global Assistance is there to get stoma supplies to you when you run low unexpectedly whilst travelling. If you need emergency assistance, the sooner you contact us at Respond the quicker we can get the supplies you need. Contact us: Telephone 00 44 29 2076 7880.
Note to self, give plenty of notice next time. Unfortunately in this case I couldn’t because of the surprising and unexpected ripped bag extravaganza.
I have never felt, or considered myself disabled due to my stoma. I know this is a very contentious issue within the stoma community, which is one of the reasons why I don’t have any involvement with any support groups or forums or stoma organisations. I don’t want to be drawn into or bogged down with things that don’t concern me.
My feeling has always been that classing stomas as a disability will always depend on how you feel, and where you arrived at a stoma from, and the behaviour of said stoma.
For example, I had a cancer. The cancer was cut out and a stoma was added. I then continued my life after treatment better than it was before, because the cause of my illness and symptoms was now gone. My lived experience has been better for having a stoma.
My stoma is a very well behaved colostomy.
Therefore = not a disability.
But for some, the reason for their stoma was an inflammatory bowel disease, which although has been eased by having a stoma, the underlying health condition still remains, including fatigue and other symptoms.
Those people tend to have ileostomies, which by their very nature are harder to live with due to liquid output and risk of leaks.
Therefore = the possibility of a poorer quality of life, which yes, I’d say qualified as a disability.
It’s a very personal and subjective thing. It really depends on what the life you are able to live with it is like.
I personally have never felt disabled. Because I’m not.
But right then in the moment, in the situation I found myself in, with stoma bags unavailable for purchase over the counter, I felt extremely disadvantaged.
The playing field was most certainly not equal.
If only stoma products were available to buy over the counter. Without waiting for a prescription or the wait to get them ordered and delivered to you.
If only I could have walked into a shop, a pharmacy, a hospital, a clinic, or anything, and been able to collect for free, or even if I had to pay for them, I wouldn’t have cared. I would have paid ten times the going rate I felt so vulnerable and desperate.
They wouldn’t even need to be the ones I use normally.
In that moment of vulnerability I’d have taken anything over nothing. Because at that point, I felt less equal to the rest of society. And I really didn’t like it.
The final bags available to me. The pressure on them to complete their work was phenomenal.
We still carried on and had fun. But all the while I was running through the what ifs in my head. It wasn’t a pleasant experience.
I saved this dress I bought a few weeks ago for our Acropolis visit.
Dress from M&S, Shoes from Louis Vuitton, Bag from Jimmy Choo, Determination to have a good time from within.
I found out at this point that this dress did not in fact have the pockets I assumed/hoped it had. Hard to know what experience was more distressing…the lack of stoma bags or the lack of pockets. Hahaha
Chris was blown away by the Acropolis, who wouldn’t be. The home of modern civilisation and the birthplace of democracy.
I was a fabulous tour guide, and anyone who tells you otherwise is a liar and a fool…😬
My advice for any visit there;
*Wear grippy shoes, sports shoes, walking boots, that sort of thing. It’s quite slippery up there on the marble.
We saw five people who had slipped and hit the deck! Five! This was my third visit there, and although I’ve seen people slip, and have indeed slipped myself, I’ve never seen people laid out on the floor until this visit.
One poor woman had an extremely nastily broken arm, bless her heart.
* Take a sun hat. It gets very spicy up there.
*Wear sunscreen
*Take water with you. We didn’t so that was fun.
*Enjoy!
It’s a beautiful place to visit.
We then headed back to Plaka for alcohol free beer and lunch. A lot of lunch!!
For someone with a precarious amount of stoma bag access I certainly ate a lot!
Hero? Fool? A like to think a little of both. :)
We had a fantastic time. Yes, even while I was off my head with bag stress, which by this point was all consuming.
It was then back to the hotel. Only I wasn’t able to swim or even dunk in the water. I just had to sit on the side like a sad sack.
A very delightful American lady, who looked like Meryl Streep, saw me sitting on the side of the pool dangling my legs in to stay cool, approached me to say how cute she thought my shorts were.
She won’t know what that meant to me, because she has no idea that in my head I was screaming and crying with despair at leaving myself all adrift with one bag left to my name.
She won’t know how saying something so small made a big difference. But I am very grateful to her for it.
I really really messed the whole bags thing up. I was so disappointed, with only myself to blame.
The next and final day of the holiday was spent having a chilled morning. Then a hop on sightseeing bus tour. It’s best to do these on the first day you arrive somewhere because you can get your bearings, and then choose the bits you want to see more of.
Dress from Me & Em, Bag from Jimmy Choo, Shoes from LV.
The tour was really good. And as Chris and I are naturally very lazy it worked out jolly well for us. Because we took in the sights whilst seated.
We hopped off, walked around a flea market we found just at the edge of Plaka which was nice, bought a few souvenirs to remember this trip by, although the whole nervous breakdown about bags is probably what I will remember it for.
Then we headed back into the main part of Plaka for lunch. Only this time I had to eat less, even though I didn’t want to. But for safety reasons in my last bag I felt it was for the best.
Each hour that past felt like a win. A step closer to getting home and getting back with my bag supply.
…the flight was delayed! Excellent timing EasyJet, excellent!! 🫣
Finally on our way back home, I watched the rest of the Bridgerton series I’d started on the way over (god, it’s absolute garbage isn’t it, enjoyable nonetheless).
Then it was finally time to land and I could breathe a sigh of relief!
…only, as we were heading in the general direction of earth, the pilot aborted the landing and pulled the plane up sharply!!
…and it was during this moment I remembered how much I love my stoma because without it I think things could have got messy! Hahahahah
There must be a message in all this debacle from the universe, but quite what it is I don’t know yet.
Pack more bags is definitely up there though.
We did eventually land on the second attempt. We made it home in good time. Arriving back to find a delivery from my stoma company, I know, the irony wasn’t lost on me either!! 😂
Keep well, take 10 times the bags you think you’ll need, stay safe.
Much love, thank you for stopping by to read my offerings. It’s much appreciated.
xx