Last week started off strong with some fun things to do.
I made sure for the most part I wore dresses, as I wasn’t keeping up with proper water intake and therefore struggling with constipation.
This is the opposite to most people who I have met, that have a stoma.
I guess I shouldn’t complain because constipation is easier to deal with than a very liquid output. But it is uncomfortable, so I wear dresses to aid any flow that occurs.
Dress from Primark, Shoes from Hermes
Dress from Primark, Shoes from Dior.
I finally got round to Ben and Erin’s flat, to meet our new grandkitten, who happens to be absolutely adorable.
I’m not a cat person. Or at best I’m ambivalent towards them, show me a picture of your ‘cute’ cat and I might raise a smile.
Show me a dog and it would be a different story…show me a Hermes handbag and it would be another different story altogether!!
So I wasn’t sure what to expect from the new baby in the family.
But oh my goodness he’s adorable!
Welcome to the family little one.
His full name is Thierry Daniel Henry Chamberlain Doré, TeeTee for short.
I think it’s fair to say I’m smitten with this kitten…
Yes, I am very taken by him.
Then Friday night we took Kim and Matt out to a new Indian restaurant that has opened in Chelmsford, for Matt’s 50th birthday!!
…he’s very old now. :)
The food at Mowgli is fabulous. And because there were 6 of us, we ordered everything on the menu because, why not!?
I wore these shoes, I fancied feeling normal height (normal for others, not me, I’m very short in my real life).
Anyway, I have fallen off these shoes 100% of the times I’ve worn them, and this time was no exception.
By the time we got to the restaurant I had stumbled 3 times.
Then once more at the restaurant.
You’d think I’d give up on them, but they make me feel sooooo tall and I love that!!
I will break a leg at some stage I’m sure.
It was a really good evening, the food was delicious, would recommend.
Top from M&S, Trousers from Michael Kors, Shoes and bag from Mulberry
The offending article 😂
I was lording my new found height over Kim.
I can confirm I was the embodiment of the saying “pride comes before the fall”
🫣😂
Good food, good friends, and for me, loose enough trousers to eat in ~ with a low risk of a leaking bag.
Nothing is guaranteed in this life, but I do the best I can, because I definitely refuse to miss out on fun.
Before my surgery, before I had lived experience of actually having a stoma, I had assumed that socialising would be non existent. Never in a million years did I think I’d be out and about living a full life.
I had visions of only ever being in contact with friends by phone or social media. I couldn’t imagine being out in the world really living.
But nothing to be further from that apocalyptic imagining. I live a very very good life. A very full life. Full of happiness and adventures.
Actually, more so now than the lost, and miserable misdiagnosed years!
We got back to Matt and Kim’s at 10pm, to discover their twins were still awake. So Chris very kindly threaded the sewing machine I’d bought Bel for her 7th birthday the week before.
Chris is amazing at everything. There is nothing he can’t turn his hand to (he says he can’t really do plumbing, but actually he fixed a broken pipe a few weeks back, so that’s not true). He can just read an instruction and carry it out.
I can read an instruction and forget said instruction before the end of the sentence.
So he threaded the sewing machine and then he and Bel made a little tote bag, right there and then, at quarter past ten at night.
I have a belief that Bel will be a fashion designer when she grows up. She cut up a pair of cycling shorts and turned it into a really nice top the other day!!
(Unfortunately she hadn’t actually asked if they would be okay to cut up, and she accidentally cut through the school dress that was under them on the floor at the time, but you know what, that’s a small price to pay for such vision and creativity!).
(Easy for me to say as an outside observer!) ;)
Then Sunday was the day of my big adventure.
…I was on my way to Maastricht in The Netherlands.
I was going over there for a meeting with the committee I’m on with EAES (The European Association of Endoscopic Surgery).
If you have read my blogs before you’ll know that I was a Patient Representative on a few occasions for EAES guideline development projects (the meetings I fly to Greece for).
Anyway a few months ago I applied for, and got a position on the Guidelines subcommittee as a Patient Partner.
Well, the EAES were having their annual conference in Maastricht, and I was very pleased to be invited along to attend it, along with the first in person meeting of the newly formed Guidelines Committee.
I tried to find flights there, as this is always my preference, even as a fearful flier.
But sadly there were no direct flights from the UK.
Which meant I had to find a new route to it.
I decided upon trains, after all how hard could it be? Train travel in Europe has always been portrayed and held aloft as the gold standard of rail travel.
I have always believed it to be far superior to the UK. With ease of use, reliable, with an abundance of availability, for a very low price.
Oh, read on dear reader, read on…
Top from Ralph Lauren, Trousers from M&S, Shoes from Gucci, Bag from Goyard.
Step one was easy enough. Chris dropped me by car to St Pancras to catch the Eurostar to Brussels. Easy as peasy!!
It was a fabulous start to the day.
The journey there:
there is a train journey missing from this write up. I just re read it and noticed I’ve only mentioned 4 trains, and it was actually 5. So I have missed one of the trains off. I think I’ve blacked it out 🫣😂
Eurostar was super easy, and very comfortable and pleasant.
I just assumed it would be a simple enough process to find my next train.
But as I entered the main terminal in Brussels Midi, all became very uncomfortable and very unclear.
I was getting the train to Aachen in Germany, that’s what it said on my ticket.
I had expected to see a sign for it on the display board, but the train wasn’t displayed as the Aachen train, as it stated on the ticket.
It turned out it was actually the Frankfurt train, which stops at Aachen. It really would have been helpful to know that.
But without that info to hand, I then narrowed the choices down by the times on the board, to guess which train to get by departure time rather than destination.
This was on a very tight schedule. I had seconds to spare by the time I found the train.
Fabulous, I was then on train two, ready for the rest of my journey. Easy right?
I arrived at Aachen to find that unfortunately, the next three trains to Maastricht from there were cancelled.
Fun times on my interailing holiday I can tell you. I was too scared to be panicking, I needed to get to Maastricht and my nervous breakdown would have to wait until then, there just wasn’t time mid journey.
I tried to find someone to ask or an information point but there was no one and nothing. So I headed for the ticket office.
The man in the ticket office said I could go a different way, and I was to take the next train on platform 3 and get off at Herzogenrath, and then take the Maastricht train from there.
I got talking to a lovely Dutch couple who were going to the stop before Maastricht, so I hitched my wagon to them and followed them.
We all boarded the train. There was some further confusion on that train as the information given was non existent. Unfortunately the Dutch couple were no good to me, because they got lost too.
Finally the board on the train mentioned Maastricht as the final stop! Yay!
So at last I was on my final leg of the journey…
Or so I thought.
We stopped at a station in the Netherlands this time, having been through France, Belgium, now Germany, and on to the Netherlands. A man got on and asked if it was the Aachen train, I said with some confidence that no, in fact we’ve just come from that direction and this is the Maastricht train.
Only when I looked at the board inside the carriage that had formally, seconds before shown that it was the Maastricht train, it now said Aachen!!!
Whattttttttt???
So I got off of that one very quickly, before I ended up back when I came from.
I found a nice German man who was having the same problem as me.
We searched for someone to ask directions from but there was no one about (a common theme on this journey).
Eventually a train arrived that seemed to suggest that it might be going to Maastricht, so on we got.
Off I went with a hopeful heart that it would stop at Maastricht Randwyck.
Until I got chatting to an elderly Dutch couple who said that no, it’s not going to go to Randwyck, and that I needed to get off at Maastricht central.
Unsure as to what to do, I took their advice for fear of ending up back where I’d started. So that’s what I did and once I reached Maastricht central I got a cab to the hotel, as it would have been a 40 minute walk…
And then, 10 hours after leaving home, five countries and some very stressful train journeys later I made it to the hotel.
Heaven.
The hotel is a fair distance from the town centre. So I asked at reception how to get to the city. She explained I could walk (40 minutes) or take the bus (10 minutes).
So once I’d checked in and unpacked I headed out to have a look around as I was the first of the group to arrive.
I decided to go by bus. Which is actually hilarious, because in London the other day my feet were aching, and I thought about getting a bus. But as I haven’t been on a bus in my own in about 30 years and didn’t know how to pay, I decided against it.
But here I am, in a foreign country, after a hellish journey, not speaking a word of the language…off on a jolly on public transport.
I suppose on some level I didn’t think it could be any worse than what I had already done.
This cheeseboard was soooo good. The waiter explained that the cheeses were chosen to represent the best cheeses from across the country.
It was actually very straight forward and very pleasant on the bus.
I reached the city centre. Did a bit of sightseeing, I thought I might as well while I was here. And then decided on a lovely looking bistro for lunch for one. Having eaten alone the week before really helped with my ability to publicly dine by myself.
I then decided against getting the bus back to the hotel because I was still trying to process and decompress from the journey to get there.
And it was a very pleasant day, so I decided to walk back along the river.
I’m terrible at using the sat nav on my phone, I can’t really use the one in the car either.
But nonetheless I thought a walk would do me good.
I started off well, but it slowly went downhill. I text Chris to see if he could help me by looking for me on Find my Friends, which he did, and was able to direct me from home, back to the hotel.
It was very reminiscent of the 80s TV show, Treasure Hunt. He was the Ken to my Anneka!! Hahaha
He very kindly guided me all the way back to the hotel.
I am not the strong independent woman I was hoping to grow up to be. But that’s life isn’t it. :)
The meeting that I went to Maastricht for was very good. I was however a bit late to it, because I’d organised myself to a state of complete confusion, and mistaken the start time of the meeting.
I know, it’s a very me thing to do.
I printed off all the schedules for the week.
I then put the wrong one in the clear plastic wallet I used to organise myself, I’d efficiently taken note of the start time (of the wrong meeting) and planned my day around it.
Thankfully the wonderful Maria, who arranges all the meetings for this particular committee, gave me a quick reminder and I managed to get to the meeting only 20 minutes late, it could have been a lot worse. So I’m very grateful for the help.
But once that bit was hurdled, the meeting itself went very well.
My role on this committee is to find (recruit, want for a better word) other people like me, who have lived experience of many and various bowel/gastic issues, to provide patient perspective feedback on upcoming guideline projects.
Patient involvement has become increasingly popular and important to all sorts of medical research and future projects.
I have had readership from 58 countries this year to date. So there must be someone, or even some-two, who would like to add their voice and experience. :)
If it’s something you would be interested in please email me suzanne@gladragsandbags.org
Travel expenses are paid. And you’ll be pleased to know that all of these particular meetings take place in Athens, and I can’t stress this clearly enough - a very very easy city to get to (No trains needed).
Just a flight, and then you’d be picked up in Athens airport and taken to your paid for accommodation.
And I’d be on hand to give you support and assistance at every stage. So you wouldn’t be going in cold (and I will up my game and get better at organisation, I promise).
It’s such a rewarding thing to take part in. I can’t fully put into words how rewarding it is. But I get a lot out of it.
Having a patient voice in the room when new procedures and guidelines are being developed and discussed is incredibly important and empowering.
I need to point out, this isn’t something that is going to help anyone going through treatment right now. But it’s a great way for people who are recovered to give back to future patients who follow us through. It’s so important.
But not only that, it’s a fascinating, worthwhile process.
So if you fancy attending future events please don’t hesitate to get in touch with me.
Drop me a line so I can call on you if a relevant topic to you cropped up.
The meetings take place in Athens. Travel and hotel expenses are covered. Plus you get to go on a cultural trip to the Acropolis, which is a must. Athens is a fabulous city! One of my favourites actually.
As yet I don’t know what next year’s guideline projects are. But once I find out I can match them to the right person, who can then give a patient perspective.
It’s daunting, yes, I agree, but only because it’s an unknown right now. But you will undoubtedly enjoy the experience.
I will be attending the meetings in person too. So you wouldn’t be alone unless you wanted to be, if that would be a concern.
There is the possibility for those who would like to participate, but are uncomfortable with travelling, to take part via Teams.
I attended my meeting, joined some of the Greek committee members for lunch in Maastricht city centre. Which was very kind of them to let this old English lady tag along.
It was a great trip all in all.
Then the next day it was time to go home…
Dan Dan daaaaahhhh… (insert dramatic music here…)
I walked the five minutes walk to the station at Maastricht Randwyck…to find it all closed up, not a sign nor person in sight. No information anywhere.
With panic rising I finally found a pedestrian - most people ride bikes here, so finding someone moving slow enough to ask directions of is unusual and difficult to say the least.
I asked a really lovely university student where I would need to catch the rail replacement bus from, that I had heard mentioned by Lisa, the surgeon I know.
The lovely uni student girl said “usually there is a man in a ‘danger vest’ (I assume she meant High Viz, but danger vest works far better, so I’m keeping that one) here explaining where you need to go to find the bus”
But as there was no one in sight, and luckily for me, she herself had the same trouble last week. She told me to follow her, down the road, down some steps to under a bridge, that had no signage to say it was the replacement service bus stop.
But there was another girl, with a suitcase standing there. So I thanked my escort, and I asked suitcase girl if I was in the right place for the rail replacement bus. And she said she was pretty sure, but not definite.
The poor girl said she was meant to be on an earlier train to Brussels airport, but she had no idea where to go to get the bus and there had been no one to ask.
So she’d walked around the block and finally saw the back of the bus…as it was pulling away.
At this point we were both waiting for a bus that might not come. But I felt safety in numbers was my best bet and I waited with her, because she was going to Brussels too. We were both then hoping for the best.
Finally a bus showed up, but it had no signage to say it was the rail replacement bus to from Randwyck to Visè.
But with little other choice, we got on.
It was chaos. We arrived at Visè station to find they are having major works done. But on the upside here in Belgium, there was at least staff to ask for help and information from.
They sent us down the stairs to the first platform, we then had to use a footbridge over to the other platform to get the train from Visè to Liege, no problem you’d assume…only it is a temporary scaffolding set up.
The fear!!!!!!!
But what choice did I have?!
The scaffold bridge was wobbly AF.
At this point I think it’s important to point out that if you had any sort of mobility issue, you wouldn’t be going anywhere. This was not a wheelchair friendly situation, which is shameful in this day and age.
We all made it onto the train, and we finally arrived at Liege station.
The train was meant to be platform 3, so that’s where we waited.
Then I asked a platform guard if this was the right platform to Brussels and he said, “no, you need platform 4, so be quick!”
So we raced there, up yet another flight of stairs and down the other side.
We made it onto the platform in time, I pressed the button to open the awaiting train door, and nothing happened. I was a bit surprised, but to be honest, should I have been?
I then asked the platform guard on that platform if this was the train to Brussels…and he said “non! You need to go to platform 3!”
(…the platform I had just come from!!!)
I thought I was going to die of stress and heart failure from all the running up stairs at this point.
But I rushed back to platform 4, and hoped against hope that it was now finally the right one for Brussels Midi.
The train arrived. I got on and hoped that this journey would soon be over.
I had left plenty of time, as I had a feeling things weren’t going to run to plan.
I already had bought all my tickets for this trip, weeks ago. But I had also bought extra train tickets, for an earlier train, from Maastricht Randwyck to Brussels the night before, because I had a feeling it wasn’t going to be as easy as I had once assumed - in the comfort of my home before I left for the Netherlands.
I was about 2 hours early for my Eurostar train. But I really didn’t care. Because I was very close to just sitting down and crying at this point.
I can’t put into words how awful this whole trip was travel wise.
I would have assumed I’d have melted into a ball and cried my eyes out, it was frustrating enough to. But actually it felt like I was having an out of body experience, watching myself sidestep all these obstacles that kept coming at me.
Yes, I am aware I sound somewhat melodramatic, I am fully aware there are people going through actual hell, babies being killed in wars that don’t concern them.
I get that. I am keeping this in perspective. This is a travel comparison to flying, rather than an actual disaster scenario.
It was too much for me travel wise. I’m not good on my own in the UK with travel. So to have all these issues in 4 different countries was a tad overwhelming.
It’s really opened my eyes to how dreadful train travel in Europe is, or at least can be, maybe I just got unlucky. I had this rose tinted glasses view of a nirvana of exceptional trains, running on time, with easy to follow directions. With bountiful service and low prices.
I have always viewed UK train travel with distain, it’s rubbish at best, always comparing it unfavourably to our European counterparts, but that was before I had used the train system abroad.
Now I have a different view. But the best thing I have experienced is the kindness and generosity of care of French, Belgium, German and Dutch train passengers, who helped me so much, with so much kindness and compassion, even when they were in as much of a pickle as I was. I couldn’t be more grateful to them.
Merci, Merci, Danke, Bedankt!
The train travel was awful, but the people were fabulous!
The outfit for my meeting - Top from Ralph Lauren, Trousers from M&S, Shoes from Gucci
The bridge!! 👀
In any other circumstance this would be a no thanks from me!
Outfit 1 for the journey home…
Shirt from Ralph Lauren, Trousers from Michael Kors.
I put this on and then started getting rising anxiety about the possibility of a dreadful train journey.
I had bumped into a lovely surgeon I know who was attending the full conference, and she had told me about her experience getting there, and unbelievably it was worse than mine was.
I started feeling like wearing trousers was going to add to my ruin. So I changed it for a dress. Which I felt gave me a better chance of a leak free day.
Having a stoma isn’t a problem in my opinion, but it does add another layer of possible stress to any situation. There is alway a risk of leaks, but I choose to live a life of bold adventures by choice and just chance it.
Outfit 2,
Dress from Burberry.
Would having a dress on make the journey easier? No not really, it’s not going to miraculously conjure up station workers and clearly sign posted information. But it did give me a feeling of confidence that I wouldn’t have to tackle a bag leak on top of the shambles that is European rail travel.
Once back on the Eurostar, I could finally relax that this mammoth journey was nearly over.
I arrived back into London joyful and full of appreciation.
I headed for the metropolitan line underground station where I found a train there, just waiting for me to board (very odd, and not an expectation I ever have).
I then reached Liverpool Street to find that the Braintree train (a god awful, archaic 1 hourly serviced line) was also just sitting there waiting for me to board!!
(Was this my reward for everything I’d gone through on the continent? Maybe).
I had time to purchase my ticket and a hot chocolate to steady my nerves.
And then I was finally on the last leg home. All I’d need to do then was get a taxi from the station to my home.
But on the train I thought I could save the cab money by walking to the few minutes walk to Ben and Erin’s flat, and wait for Chris to finish work and come and collect me from there.
So I text them to say I’d be popping in for kitten cuddles and a cuppa if that would be okay, and they said “of course it would!”
Then they suggested Chris and I stay for dinner to save me cooking when I got home after the 10 hour journey to get back.
I could have wept!! It was exactly what I needed.
Ben walked to the station to collect me and to carry my suitcase. And then we back went to theirs.
All’s well that ends well. Adventure done. Home safe and sound. :)
One very weary traveller :)
The journey forgotten and consigned to the past. And some delightful kitty cuddles to de-stress.
And a delicious meal cooked for us. Can’t really want for more.
Then, very early the next morning we were collected by the car service and taken to one of my favourite dates in our summer social calendar!
No, I didn’t really have time to decompress from the previous few days, but a lovely day out was exactly what I needed. :)
Can we just take a moment to appreciate this outfit, because I was over the moon with it.
I had bought a dress to wear to this event while I was in New York in February (yes, I like to plan ahead). But the dress I had chosen was for a full sun, hot day, like it has been for the previous three years running.
So having seen the weather forecast for this week prior to leaving for Maastricht I decided to buy a new dress.
And this one was just the ticket. It’s beautiful. It feels great on. I believe it looked amazing.
It’s very flattering. It’s very Ralph Lauren, without having the logo sewn on it. (I just don’t think a logo-ed dress looks elegant and classy, apologies if you do, it is just my personal preference).
There is a time and place for a logo. And elegant dressing isn’t it.
The Cartier Queens Cup Polo tournament, at Guards Polo Club, is one of my favourite days out of the year. I really look forward to it.
Last year it was so hot Chris had to buy everyone hats and umbrellas to shield us from the intense heat. And this year he had to go and buy us blankets from the shop there to protect us from the cold. Welcome to England!! Hahahahah
Dress from Ralph Lauren, Belt and Shoes from Hermes, Shawl from a shop in Mumbai, Bag from Louis Vuitton.
I love a bit of divot stomping I do!
It’s so iconic, very Pretty Woman (without the prostitution).
During the second match I spotted an absolute beast of a divot, I was determined to get it, and with a little bit of help from my friend Scott I claimed that glorious mountain of a hoof mark.
It’s just a really fun, bit of silliness. Everyone gets involved. It is actually like you see on the movies.
It was the best day we’ve had there. Yes the weather could have been better. It was cold at times, but on the upside, it wasn’t raining. :)
The clients were fabulous fun! And we had such a great time together.
At one point I had completely forgotten that we weren’t all old friends on a day out. That’s how comfortable and settled it was.
Why do I love polo? Absolutely no idea. I wasn’t brought up in a polo family. Much like Rishi Sunak, we didn’t have Sky TV when I was a child either hahahahahaha.
But polo has captured Chris and I’s attention. We really enjoy it, and even joined a local club.
It’s a brutal game, but played with elegance. And the atmosphere is great, without absolutely pissed up people throwing up and throwing punches - like British horse racing attracts.
Pissed up and classy is how I would describe a polo day out. Less volatile than a day at the races. Which is right up my alley. :)
And the blankets were a welcome addition to the day.
Cosy and practical. :)
It was a fantastic day out.
And I came home from there for a much desired rest.
I literally slobbed out on the sofa the next day.
I was and still am exhausted.
I did learn things on my adventures though. So no experience is ever wasted.
Firstly I learned that train travel everywhere is shit.
Secondly I realised that the ‘romantic’ train adventure across Europe I have always suggested to Chris is a no from me!
And thirdly having been corrected on my use of the word Holland, I have discovered why this is a contentious issue.
I had a lot of time for in depth discussions with many and various people on the trains.
I explained to a very nice Dutch lady that someone had corrected my saying “Holland” and not the “The Netherlands”.
And that as I’m a thick English person, I wasn’t sure what I had said that was so offensive.
I had heard of both Holland and the Netherlands but wasn’t sure what the difference was.
Anyway! Now I know, and I can share it with you, in case you are like me, and a bit unaware.
The Netherlands is a kingdom, made up of 12 provinces.
Holland is the name of only two of the 12 provinces. I believe they are North and South Holland.
So if you say Holland to describe the whole country, you are insulting and erasing 10 other provinces.
It’s like calling England - Essex. You simply wouldn’t do that because it would be nonsensical.
Or like calling Wales, England, in Wales. Give that I try, I dare you!! Hahahahahha.
So you see, The Netherlands is the true and proper name for the whole country. Not just two counties within it.
See how educational rail travel can be.
It’s not enough to entice me back to try it again. But it was interesting nonetheless.
I also learnt that the Dutch have an aversion to good signage and staff at train stations.
(I don’t think us Brits do much that well, but we do love signs, and a man in a danger vest to direct you on your way).
I also learned that, unlike I had previously thought, not everyone from neighbouring countries speaks the neighbour’s languages. Which I thought was very interesting, but not terribly helpful because as a one language speaker myself I was hoping to rely on everyone else. Hahahah.
If you happen to be heading off on a European train tour, I wish you all the best. I hope you have a wonderful time, and a far better experience than me.
If I ever travel by train again in mainland Europe, it will only be by The Orient Express. That is my new personal rule. 🥰😂
Much love, keep well, I’m off for a nap. Xx