This is a long one, so please strap in for a marathon read, or if you ditch it part way through I couldn’t and wouldn’t blame you.
Thank you for trying. I have no idea where to start with this. I have been away travelling for a long time, actually, I’m still away. I went home for a few days after Belfast, and then flew to Spain.
If you are new here, welcome, thank you for coming along, and if you are a regular, thank you for waiting for me, that is so kind, and so appreciated.
This blog started originally as an anthology of outfits for people who have stomas, so I think it’s safe to say this edition will be mostly pictorial, as I have been so busy that everything is a blur.
Before I start the start, I just want to bring your thoughts to life. And the fact that some people think having a colostomy, or any other stoma is the worse case scenario…
Because as far as I know, I’m living proof this simply isn’t the case. I get to dress how I please, in a way that makes me happy, I get to eat well and travel and love and truly live. There is nothing remotely pitiful or sad about my life.
I am lucky enough to live the most ridiculously blissful life, I know it, I feel it, and I appreciate it.
One of the greatest privileges among them all is to have found a place within this incredible organisation.
To have been welcomed into The European Society for Endoscopic Surgery (EAES) with warmth, humility and respect is incredibly humbling. These people are Giants in their field, they are the best of the best.
If anyone should have imposter syndrome it should be me, and yet I feel like a valued part of something incredibly special.
I’m sure not everyone within the organisation appreciates my participation, and in fairness I get it, I am an outsider, but no one has ever made me feel like one, and for that I am and will always be forever grateful.
They are so gracious, humble and kind that they haven’t let any possible personal opinions sour my experience.
As always I had the best time away with them.
The week in Athens was incredible, absolutely incredible, meetings, eating, catching up with friends, eating, eating, eating.
How lucky to have fallen into this community.
I was absolutely shitting myself about this trip, I am the very antithesis of a strong independent woman (...by choice, being a strong independent anything has never really appealed to me, it looks really stressful, and lot of admin).
But Chris encouraged me to come here and do what I do, and I'm so glad he did, because I had the most incredible time.
Chris and I have been together for 32 years, married for 30, and in all that time this is the longest we've ever been apart (with the exception of that hospital stay for the very thing that led me to this point).
I can't say l'd want to be apart for that long again, in fact I know I won’t do it again, but it was fun being there.
It was absolutely joyous. And I feel incredibly lucky.
Absence really did make the heart grow fonder though. I had a blast in Athens with my EAES friends, but I couldn’t wait to fly to Corfu to meet up with Chris.
There is no one like him on this planet. I’ve said it so many times before that I’m not even sure if he is from this planet, he is simply the best being I’ve ever met.
He is everything. And all I really want to do is be as close to him as possible. Nearly 33 years into this adventure together and I am equally as obsessed with him as I was when I first saw him across a crowded party.
Our eyes met and our hearts and worlds collided, and here we are all this time later. Living the dream. And they said it wouldn’t last! (Actually, some did say that, out loud too! 🫣🤭😂🖕🏼).
He’s the one who encouraged me to go to that first meeting with the guideline committee for EAES, four years ago, he sees something in me that I don’t see myself, he believes I have something to offer others.
And he was right, because I am able to share my experience and feelings about what I went through with people who are at the practical side of that.
Together we can make future patients lives so much better. Which feels very special. I get to create a legacy.
I’m a nobody really, a muggle of all muggles, I hold no qualifications in anything useful, or anything else for that matter. But I had a terrible time and I get to use that experience to help others. And that is invaluable and empowering.
*If you want to understand more of what I do for this association Google EAES guideline committee and you can get a better idea.
I headed off to Athens, dreading the possibility of being lonely and homesick. But actually, surprisingly enough I was so busy that I was absolutely fine.
Airport security are being a bit pesky at the moment, something seems to have changed, and they seem to be over zealous about stoma bags.
Now, I’d accept it if they were going to be equally as intrusive with babies in nappies, and adults in nappies come to that, and people wearing sanitary towels. But I think we can almost guarantee that they are not. So why single out stoma users?
I understand that the new scanners show up stoma bags more often than not. I get the science behind it, I just find the nonsense that follows infuriating.
At Gatwick my bag flagged up, I had a pat down and was swabbed - fair enough, I’m totally happy with that if it’s done safely and considerately.
But then she said “now I need to take you to a side room to actually see the bag”…and I thought, fuck that! Absolutely not, so I undid my trousers and showed her there and then. Whilst she protested for me not to.
I don’t have the time or energy to play silly games. I mean, seriously, what the hell will looking at my stoma bag tell them more than the scan, pat down and swab hadn’t already??
Come on CAA!! Please get some common sense guidance in place. New people become ostimates every day, it’s not that uncommon, and we do manage to get out the house and travel.
It’s so frustrating, and so hit and miss, erratic even, in the quality of service.
I want to be safe on a flight as much as anyone else does. But I want to be treated fairly at the same time.
So unless they are going to look at people’s sanitary products, nappies and anything else that might show up on the new and improved scanners with the same gusto, I want the sensitive sensible treatment I deserve. And every stoma user deserves.
I still haven’t heard back from the head of Stansted airport about the borderline assault and injury I suffered there a few months ago. So that’s nice isn’t it, I feel so valued as a customer…and innocent party I might add.
The recent spate of poor treatment hasn’t put me off of travelling, nor should it put anyone off, but we should all be making a complaint each time the service is below a reasonable standard, because nothing will get done otherwise.
Scan, pat, swab, that’s all that’s needed.
I don’t want people to be able to avoid scrutiny, but I don’t think it’s unreasonable to ask for proportionate and appropriate treatment.
Me having to make sure I’ve tidied my bikini line before I fly, just in case I need to hoik my skirt up, because someone wants to see my bag with their own eyes is ridiculous! It’s also incredibly humiliating.
Looking at it won’t tell you anything that patting and swabbing it didn’t.
I really don’t want to have do the rounds and go on any day time television shows to highlight the plight of stoma wearers…couldn’t airports just get their house in order. Pretty please 🙏🏼
Also, I’d like to add, if this is about the possibility of bombs being carried in a stoma bag, there would surely be metal wires etc that would show up on the scans.
And if this is about drugs, then it seems odd that at the same time I was being stopped and searched, my hand bag went through the scanner, with 6 very small pots of what I would describe - as suspicious looking white powder - in them, where I had decanted a weeks worth of magnesium glycinate that I take to aid sleep. Make it make sense?!? 🤷🏼♀️
Top from Maje, Trousers from M&S, Shoes from Hermes.
Anyway, I arrived safe and sound. To a hotel and area I was unfamiliar with. I was a bit worried I’d not settle into the new place.
But we had some fabulous nights out, I met some amazing new people. And I laughed till I cried a fair bit. My cheeks were aching from laughter.
I met a fabulous young surgeon who was so much fun, and has the best name ever…and if I get the chance to come back for another life I’m going to ask to be an Olympia too. 🥰
I spent a lot of time with my friends Bright, and Maria, we had a blast actually. It was really good fun, they were both very generous with their down time.
I had some capers, adventures, and experiences I would never have had without knowing her. So that makes me very lucky.
I got to go to her club with her in Athens, and it was amazing. The food was incredible!
And I was stunned when I went to the presentation about the work the guideline committee does to see myself on the big screen on stage. That was super cool.
See! There’s me! ⬇️
It was such a great location for the congress, because for me it’s a city I know well and love, although this particular area was new to me.
Plus it meant Stavros - who runs the committee I’m on - wife could come too as they don’t live far from Athens.
I was able to catch up with my lovely friend Meropi, which was wonderful! We don’t get to see each other very often, but it’s always a pleasure to meet up and talk for hours when we can. It was simply the best trip!
It was the first trip away since Chris and I made the new changes to our lifestyle a few months back - to build bone density and muscle mass. I’ve got to be honest, I was a little fearful of being in a hotel for such an extended period. Especially as I had my main holiday coming up.
But I actually went to the gym regularly, and used the stairs (I was on the 9th floor) every day just to keep myself topped up.
I ate healthily too. I even went to the supermarket to stock up on wholesome whole foods to keep me going, instead of relying on hotel food.
Obvs I took a Fortnum’s picnic hamper with me! 😂
I had a really good balance of meetings and down time. So I used the hotel pool quite a bit.
And if you’re wondering how you can apply sun cream whilst alone ~ this was how I did it.
I bought a special applicator for that very purpose.
And covered up quite a bit too, since the last lot of skin cancer removal a few weeks ago I have been super careful.
Factor 50 and 30, cover up and shade.
The pool was on the 20th floor so the views were sensational.
Dress from Oliver Bonas, Shoes from Hermes, Bag from Tory Burch
The day Maria and I went to the Hellenic Airforce Club was so much fun. Maria’s husband is in the Greek Airforce, so she has access to the clubs all over Greece.
Honestly, it’d be worth joining the forces for the food alone! Fabulous traditional Greek home style cooking, in the most glorious setting.
I wish I could get citizenship based on the amount of Greek salad I ate ~ twice a day, every day! For 16 days, surely that would go towards duel nationality?
This was the best trip I’ve had with the association in the last 3 years. I’ve been to some really lovely places with them, but being in Athens helped, because I feel at home there.
It’s such a well organised event, congratulations to Gisela and all the team behind the project. I’ve no idea how they managed it, but it was amazing.
Top from Kate Spade, Shorts from Tesco
Top and Trousers from Ralph Lauren
Bikini from Tesco
Shirt from Hollister, Shorts from Tesco
Dress from Maje, Shoes from Hermes, Bag from Jimmy Choo
The celebration meal for the EAES president is always a highlight, and always so much fun, but sadly for me I had to bow out early as I had the most excruciating gut ache. I feel confident enough to never stay anywhere where I feel any physical or emotional discomfort, so I got a cab back to the hotel and snuggled down.
It was gutting really, and it was a total waste of a perfectly good hair wash for one thing.
I felt better by the next day so I headed out with Maria again. Hopefully she didn’t mind me tagging along everywhere with her 😬🫣
I’m too long in the tooth to risk showing my bum off to strangers in short skirts, I’m not sure the cut off for such events but 53 is way too old for it. So I always wear big knickers or better still, shorts under anything very short.
Only Chris gets the pleasure of my bootie close up thank you very much 🫶🏼
A modesty short is a very good way to keep one’s dignity if you fall over…and Athens pavements are extremely slippery, so it’s always a risk 🫣😂
We then headed back to The HAF club for another homestyle meal. I felt very spoiled on this trip.
It’s such a privilege to get to go somewhere that I wouldn’t normally be allowed to go.
I did some shopping in Athens, this fan spoke to me, I mean, it speaks to anyone passing too!
Athens Adventures had, it was then time to fly to Corfu to meet Chris there.
I flew in from Athens, Chris flew from the UK.
Dress from Doen, Shoes from Hermes
God, I missed him. He is my home and my happy place.
…so is this restaurant, it’s a tough call between my love for Chris and my love of grilled giant prawns! 🫣😂
It’s one of the reasons we come to this particular area. I love travel, but I also love familiarity. And the north east coast of Corfu feels like home.
This is the restaurant I am referred to as Prawn Lady by the owners and staff.
For no particular reason…
Apart from my prawn addiction of course.
But all the food is sensational!
Finding new fabulous places to eat is a joy, but coming back to somewhere you feel so comfortable is the most joyful feeling on earth.
I think it’s fairly obvious I’m very food oriented, I have a feeling I’m part Labrador. 😂
I’m learning to speak Greek, it’s incredibly difficult, but I have managed to master most of my food based needs! 🥰😂
Bikini from Hunza G
Dress from Ralph Lauren
We have a selection of restaurants we love on this coastline, they are the reason we keep coming back, which I’m happy to share (as long as I can still get a table);
Keresia beach Taverna
Gallini
The White House
Eucalyptus
And a new additions of
Thomas’s place
Toula’s seaside
I wanted a bikini from Missoni, but unfortunately they are super expensive.
But I found this one in M&S which is pretty similar, for a not similar price.
Dress from M&S
Chris booked us into this hotel in Corfu, I had no idea where we would be staying. I leave it all up to him. I’m too lazy to read reviews, besides, he earns the money, he should get to decide what to do with it, but it’s probably more the lazy thing if I’m completely honest, because he did ask for input.
Anyway, it was fantastic!! And very surprisingly not that expensive either, but really good vibes.
The breakfast buffet was absolutely perfect for us. They had all the usual holiday greasy breakfast fare…we’re just not about that life anymore.
But as well as all that they had a really really good selection of healthy choices, foods we have daily at home. So it felt great to stick with our usual routine.
And we both went to the gym together too, so that was new.
After 32, nearly 33 years together we are still trying our hardest to give each other the gift of the best version of ourselves.
And I love that for us. 🫶🏼
The reason we came to this hotel is food, and one of our favourite places for that is The White House in Kalami.
It’s one of the original houses that Lawrence Durrell and his wife Nancy lived in the 1930s.
If you’ve seen the Keeley Hawes TV show, and not read the books you’ll be a little confused.
The TV adaptation is one of my favourite things to watch. But it’s not historically accurate.
The books by Gerald Durrell are fabulous.
Nowadays The White House is a restaurant and hotel. The location is exceptional, the food equally so.
Top from Intimissimi, Skirt from Maje, Shoes from Fendi - about 6 years ago and an exact match for the colours in this outfit.
Food, food and more food.
My top 3 cuisines are;
Indian
Greek
Italian
And that’s pretty much it.
Add in the occasional Thai food and an English Sunday roast and that’s my tastes exhausted. I am a creature of habit.
We had ourselves a little impromptu (…very much pre planned and calculated on my part - Impromptu on Chris’s) adventure!
We are both terribly sea sick people. But the best way to see Corfu is from the sea. So I wanted to conquer that fear.
Bikini from Tesco.
Triangle bikinis are tricky for anyone with bigger boobs. I love the style, but If I buy the correct clothing size that I generally wear they can look a bit porny and slaggy (that’s the curse of big boobs sadly. I can wear the same top as someone who has small dainty boobs, they’d look chic and I’d look cheap. As Chris says it’s a blessing and a curse 🍉 🍉😬🫣🤭😂. But I am exactly as the gods made me so it is what it is). Anyway, I discovered going up a size or four really helps bring back an element of elegance.
So usually in bikinis I’m a 14 bottoms, 16 tops. These are UK sizes, so in American I’d be 10 bottom, 12 top), but they’d be way too skimpy on the tops. So I buy mix and match sizes. I stick with a 14 bottom, and go larger on the size top.
This one is size 18 or 20 I think. It gives me the triangle style I love, but covered up and more classy.
The M&S Missoni dupe is a size 22 top. Because the 20 had sold out. But it still looks great. And I’m all covered in all the right places.
Can you imagine if I wore one 4 sizes smaller? It’d barely cover my nips! 🫣
T shirt from Maje, Shorts from Sosander, Shoes from Hermes
I had every intention of getting on a boat. And Chris had every intention of not.
But he saw the amount of prep I’d done for it, so he agreed to give it a try.
On the understanding that if there was even a hint of seasickness we were coming straight back in. Even if it was only 30 seconds after we left.
Our risk paid off!!
We had a blast!!
The prawn restaurant was stunned to see us arrive by sea. We’ve driven to it, we’ve walked to it, and now we sailed to it, well, boated at least.
We had THE best day. It was a surprise to both of us how well it went.
My advanced planning helped of course, but luck had a lot to do with it I think.
By late afternoon we were driving up the coast in the boat when we saw an almighty storm over Albania. I sent a photo of if to Sam and he ordered us to get back to shore asap. So we did. (Sam is a very highly qualified sailor).
Very luckily as it happens, because the storm that hit was huge. We’d have probably perished at sea on our first outing! 🫣😂
We made land, and about 30 - 40 seconds later the heavens opened.
It passed quite quickly, although violently. So once we’d showered and redressed it was dry enough to head back out for some dinner.
Top from Maje, Shorts for Ralph Lauren, Shoes from Hermes
Bikini from Tesco
I bloody love this dress, I felt very Greek mythology inspired and ethereal in it.
I did have to have 5 inches from the bottom taken off and the boob area sewn further up but it was worth it!
Perfect for dinner in Greece.
It’s so floaty.
Chris ordered a chop, of what I have no clue, but my guess would be brontosaurus!!
Anywhere with him 🫶🏼
My friend messaged me to say her and her children were in Corfu on holiday, so I suggested Chris and I go to their hotel to pick them up, and we’d all go into Corfu old town together.
We love it there, and there was a belt shop Chris wanted to go back to so it made perfect sense.
I haven’t been able to find a date to catch up with Julia for years, and she only lives 8 miles away from me in the UK, but fly to Corfu and we managed it no problem at all…see, Corfu is a magical place.
T shirt from Jessica McCormack (she’s not a clothing designer at all, she’s a jewellery designer, but when she launched her new collection a few months back I was given a goody bag at the launch party, and this T shirt was part of the goodies. It’s so comfy. I really like it), Skirt from PDKF store in Jaipur, Shoes from Hermes.
The T shirt is so cosy and soft, and my favourite thing about it is that it was a freebie 🥰😂
It was so great to catch up with them.
Then Chris and I headed off to explore the north west of the island. People keep saying how boring it is that we go to the same place every time. So we decided to have a scout around and have a look at other places.
It’s an incredibly beautiful island, you can’t go wrong anywhere (that said, be very aware through the villages, some of them are so quaint and adorable…until the road gets so tight you get wedged in, and have to reverse out, up a massive hill, with houses tightly packed either side. Yes, I’m talking from experience. I find Chris incredibly sexy, but there was nothing sexier than watching him reverse the car out of this pickle!! I say this as someone who has committed to a life of avoiding reversing at any cost!). 😂
This little day trip took us to Liapades Beach.
It’s absolutely gorgeous, but the drive down to it is steep and rammed with cars.
So it’s a no from me.
The following day we did something so astounding to me, but because we’d enjoyed our boat day so much, we went in for round 2!
We are officially boaty types now!
We wanted to see if the Tuesday's adventure was an anomaly, but we were perfectly fine out there on our second adventure too.
I am scared of boats, waves and sea creatures…and being killed by boats, waves and sea creatures, but l thought fuck it, why not just live a little.
We stopped at deserted beaches and coves, we sunbathed on the boat and the bays. We stopped at restaurants. We're like proper fancy sailor sorts.
I'm so proud of Chris for taking the leap with me, and as ever grateful to him for it all.
Preparation for seasick boaters;
Bought Seabands from Boots (seem to work although maybe just psychosomatic)
Ate a big breakfast, with lots of bread and butter to line our stomachs.
Bought boiled sweets and breadsticks.
And prayed to the universe that we wouldn't throw up and embarrass ourselves.
I'm surprised at just how elegant and graceful I am getting in and off the boat…ballerina/mermaid like really…
(This is a lie, I was incredibly ungainly 😬🤭🫣😂 but a gal can dream!).
Bikini and dress from Tesco
This was all absolute heaven.
We had most of the bays to ourselves, it was so quiet out on the water.
Then obviously it was back to Kerasia for prawns.
They don’t even give me a menu anymore, they bring me a 0.0 beer immediately, then a double portion of prawns followed by orange cake.
It’s my equivalent of The Cheers bar 😂
That night we recovered pretty quickly, with only a little residual swaying dizziness.
We think we’ve actually cracked boating!
We went for dinner again at one of our favourite restaurants, The White House.
It’s really very good. Bouji, without being stuffy and up itself.
Top from Jack Wills, Skort from Maje, Shoes from Gucci
Then our last full day was spent chilling in the shade by the pool.
We stay in Kalami;
If you are in the Kalami area of Corfu, you have some of the island's most beautiful and exclusive bays right on your doorstep. The immediate neighboring bays to the north and south offer everything from quiet fishing harbors to upscale seaside dining.
1. Kouloura (1.5 km North)
A short walk or 5-minute boat ride up the coast brings you to this quiet, horseshoe-shaped fishing harbor. Surrounded by dense cypress and olive trees, it is famous for its picturesque port filled with traditional wooden boats and the 19th-century Agios Nikolaos (Petra) chapel. The local waterfront tavern is highly regarded for its fresh seafood.
2. Agni (2 km South)
Just south of Kalami lies Agni Bay, famous for its crystal-clear waters and prestigious waterfront tavernas. It is a popular spot for yacht-goers and those seeking high-end Greek dining right on the water's edge.
3. Kerasia (2.5 km North)
Moving further north, you will find Kerasia. This is a larger, quieter, and highly scenic white-pebble beach backed by lush vegetation and a few upscale villas. It is known for its peaceful atmosphere and excellent, calm waters for swimming.
4. Gialiskari (South of Kalami)
Tucked just between Kalami and Agni lies this small, secluded, and tree-shaded pebble beach. It is much less commercialized than Kalami or Agni, making it an excellent hideaway if you want a quieter swimming spot.
How to get between the bays
While you can walk between some of these bays via coastal pathways, the most popular and scenic way to explore this jagged, green coastline is by renting a small motorboat. You do not need a license to rent a small boat, allowing you to hop from bay to bay at your own pace.
We are The new and improved Doré's...
We purposefully booked a hotel on a hill with loads of steps, we hit the gym and swam more than ever.
And we decided to go for an adventure walk along the coastal path from Kalami to Agni, it isn't massively far, but it's not our usual activity.
Fortuitously when we arrived there was one of the fanciest restaurants we've been to in Corfu.
Unfortunately for me I'd not planned to go anywhere fancy, so I was sitting eating, with no make up on (absolutely never do that) and my gym trainers, looking like a sweaty mess. Luckily no one gives a shit about what anyone else is doing because they're all too busy worrying about/enjoying their own lives.
This area is quintessentially Durrelly, you could even say it's thoroughly Durrelly, and the path to Agni is very much evocative of The Durrells TV series. Heaven, absolute heaven.
We had a lovely time billionaire tracking with the Marine Traffic App, would recommend for coastal holiday fun. 10/10.
The walk from Kalami to Agni is sensational! We are of course new to walking to places. And I can’t think of a better place to start.
We stopped at Gialiskari for a look around, and then carried on walking. I’m so glad we did because there is are some incredible restaurants in Agni, we had dinner at one called Toula’s seaside.
Very fancy, full of yacht types, millionaires…and we even saw a billionaire in the wild too. 🤭😂
It’s fancy, but so chilled, no one was dressed up in finery. Which was a bit of luck really as we didn’t know there was a restaurant there, and we certainly didn’t know that they would be kind enough to squeeze us in for dinner.
Thank god for baseball caps and dark glasses.
The food was out of this world. The people watching is top tier! 🤭😂
αγάπη μου
Now this next outfit I wasn’t really sure about, Chris said it looked nice, but I feel it has the air of Cub Scout or wilderness ranger to it.
It was cool and comfy for flying home in that night though, so I guess that’s all that counts.
I feel like I look like Russel, the little boy from the film Up. 🤭
Top and Shorts from Me & Em, Shoes from Hermes
We had our final holiday lunch at the beach taverna we love, then headed down the coast to the south of Corfu.
We are so lucky we are regulars there because although we were smart enough to book at table, we hadn’t actually taken into account that parking is limited. But the owners found us a space, which thank the universe that they did because I nearly panicked that I’d not get my final prawnage of the holiday in!
As ever the meal was delicious, and each time I go the memory of the whole thing sears into my mind.
Then it was time to have one last adventure before we came home. We’d not been to the south of Corfu before, so we thought we’d have a look around as we had time before our flight that night.
The south is beautiful, stunning, but the north east still has our hearts.
I had made a slight error of judgement with some timings.
We landed back at Stansted close to midnight Sunday night. We drove home, went to bed, then I got up Monday morning and Chris dropped me to the airport to catch the 8am flight to Belfast for a meeting I was attending with the ACPGBI.
It was a 6 hour turnaround. So basically I had 3 hours sleep, a shower and back on a flight.
Was it ideal? No
Was it the end of the world? Also no, I’m incredibly resilient. And also, I tend to moan about things less if it’s my fuck up to start with.
…Not the case if it’s someone else’s! 🫣😬🤭😂
Shirt from Ralph Lauren, Trousers from H&M.
Here we go again…6am airport club…
It was incredibly important for me to attend this meeting as I had been invited by my friend Adele to give a presentation about stoma positivity.
And it was made very easy because the rest of the panel were all so very lovely too. My friend Lisa was presenting as well as Adele, so that was nice to hear her. She’s fabulous! They both are incredible humans!
Lisa is also the one who confirmed that I’d made a fuck up with my flight timings while we were at drinks at the meeting in Athens.
When Adele first asked me if I’d come along and be part of their presentation I didn’t even think about it, it was a very easy yes!
The topic posed to me was -
“Are surgeons too negative about stomas?”
So I thought well that’s going to be a very short presentation;
“Yes, yes they can be”
😂
In the end it was decided, brilliantly actually because it made it more interesting to both listen to and do, that it would be in Q&A form.
Here are a few of the questions and my answers.
1. Can you remember being told that you needed a stoma? How did the conversation go, what went well and what do you wish could have been differently?
Answer;
I don’t remember it that well to be honest. I think I shut down. the shock was huge. It had never crossed my mind that I’d need a stoma. Not even when I was told the biopsy had confirmed cancer.
My nan had cancer in her 80s. She’d had a cut and shut. So I think I just assumed I’d have the same.
I remember my surgeon being very pragmatic, reassuringly so.
But he explained that the location meant the only option was a stoma.
So it wasn’t a debate or discussion. It was simply an explanation of what was going to happen.
I didn’t realise how lucky I was that I needed a permanent colostomy at the time. And that my route to it was cancer. Everything was cut and dried for me.
No discussion, no options. Weirdly I think it made it easier to accept in the long run.
My friends who suffered IBD had very different experiences.
They had time, and many appointments where stomas were mentioned. And unfortunately they can been seen as a negative. Not even a neutral. And definitely not celebrated as the life saving thing they can be.
They have been on the receiving end of some unfortunate phrasing
Along the lines of “the worst case scenario would be a stoma”
One of my friends at an appointment was told that she’d come to the end of the line. In her panic she took it to mean she was dying. When in fact all her surgeon meant was the drug therapies had stopped working.
None of that was out of malice, it’s simply a reflection of public opinion on stomas.
As a society we are taught from tv and film that a stoma is the most dreadful thing to happen.
In a way you don’t get with other life saving surgeries. No one is disgusted by heart transplants. They are celebrated. And so too should be the miracle of stomas.
I would greatly encourage, where possible that the patient brings someone else to the appointment. Two sets of ears are better than one.
2. Can you remember how you felt when you were told you needed a stoma? What did the word stoma mean to you at that point in your life? What were your main concerns and fears? Which ones turned out to be true and which ones weren’t?
Answer;
I was completely and utterly traumatised. I honestly thought it was the most horrific thing I’ve ever heard. I shut down completely.
I told Chris that should I actually survive the cancer I’d never leave the house again. I meant every word.
I’d keep in touch with friends and family via phone and email, but I’d not be leaving the house again.
He said we’d do whatever I needed to do.
I truly believed this would be the case, that I’d never leave the house again. (Turns out I’m barely in it).
3. What is your advice to us, when it comes to talking about life with a stoma? How should we approach talking about recovery, and managing difficult stomas?
Answer;
From your position it’s really really difficult.
We really can’t prepare ourselves for something this difficult. The surgery is brutal. The recovery is frustratingly slow. We have to remember to be a patient patient. And wait to turn the corner.
But you can’t really prepare yourself for bad things, it just causes anxiety.
The best example for this is when my son was diagnosed with cancer at 13 his oncologist tried to prepare Sam for the worst. He had nasopharyngeal cancer. He had to have chemo and radiotherapy to the head and neck area. He was fitted with a feeding tube.
Every day on ward rounds he kept reiterating to Sam that would feel very very ill soon as the radiation side effects worsened. In the end Sam insisted I have a word with his oncologist to tell him to stop. And that Sam would find out as time went on, and he would decide how he felt. No amount of warning was helping, it was only causing more anxiety. We can’t prepare for this situation, we just have to live it.
Interestingly Sam only ever had 2 days where he couldn’t eat by mouth. He did everything on his terms. he is fit and healthy man soon to turn 30
So the surgery is tricky. But once fully recovered a very good life is waiting. It will of course take some people longer to adjust, but most people I know know they lived through something incredibly traumatic, and therefore their appetite for life increases dramatically.
Difficult stomas do exist, friends of mine have had some really tricky issues, but stoma nurses are there to advise.
I personally have lived better in the last 16 years than I ever did before.
5. What has surprised you most about living with a stoma?
Answer;
What surprised me? EVERYTHING!!
I went down to surgery crying my eyes out, mourning the loss of the life I once loved so much.
Only to completely reverse it all.
Something happened, I can’t explain in. It was a physical feeling as much as an emotional one.
But I looked down at the stoma through the clear bag and just shrugged and said “oh, is that it? I can do that!!”
And from my world falling apart - it actually exploded into glorious technicolour.
Six months after my surgery I was laying on a beach in Cuba, in a bikini, sipping mojitos, and I’ve never looked back,
I fly off somewhere fabulous every month pretty much. Sometimes more.
…and I might be a bit weird. But I actually prefer it. I had 8 years incredibly symptomatic of cancer before any doctors realised what it was. So once I no longer had the risk of accidents I felt confident in my body. More than at any point my life.
I just like the convenience. I remember I was booking a girls trip to my house in Spain. And I was telling them about this gorgeous secluded beach we could go to, I said that it was beautiful, but there only downside was there’s no loos, so it’ll have to be sea wees
And they said “well that’s all well and good for you but what if we need more than a wee!”
It was only then I remembered that they still had the basic model, not my very handy bionic bowels.
6. Is there anything we can do or discuss with our patients to make the first few weeks less frightening?
Answer;
I didn’t know a single person with a stoma before I had mine. I had heard of it, but not in great detail. I knew nothing.
I didn’t know where to turn. That’s why I decided to write my blog really. It’s sort of a love letter of reassurance to anyone coming along behind me.
There are so many great positive role models on social media. So it’s definitely worth looking into some and passing their details on to patients.
There are men, and women who are out there making very positive content.
I think it would make such a difference to see people living these really full positive lives with their stomas. Out and proud. Loving life.
I could have really done with that sort of exposure back then.
Young, age appropriate pamphlets wouldn’t go a miss either, but that’s a not for you to do. That’s a systemic change
7. What is the one main message you would like us to take with us, following this session
Answer;
Stomas are not the worst case scenario, then end of the line, nor the end of the world.
They are actually for most people the beginning of a bigger better one.
One really funny thing that made me laugh, but also question my life choices was that I, or one of us, thought it would be a great idea to show some photos of me in various locations around the world living life to the full. You know, a picture paints a thousand words and all that. Well, seeing yourself on thumbnails on a phone screen is an entirely different experience than projecting your bikinied body 30 feet tall on an auditorium screen. Well you probably knew that already! Me? Me, it took me until I was sitting in front of it cringing at the horror of me in all my glory! It’s fine, I’m not shy, and to be honest these people are experts in the innards of stoma surgery so it was probably nice to see the end result of that in exotic locales all over the world. Because that’s exactly what I have done with my survival, I’ve travelled everywhere I’ve ever wanted to go. And I think it’s important to show that.
Also, it was quite nice really, a bit like attending my own memorial service! 😬🫣😂🥰
Just before I left Corfu I had a message from a lady called Sarah who I follow on twitter. She’s one of the patient reps for ACPGBI (it has a long name but I can’t remember it, association of coloproctologists ?), anyway, she very kindly invited me to the patient reps meal out after the meeting. Which I thought was so kind and lovely.
I didn’t know any of them but they were so warm and welcoming, I feel very privileged to have met them.
Top from Maje, Jeans from Levi
I had a fantastic time at the meeting, and super time at the meal.
And it turns out that Belfast is a very nice place to visit. I will be returning for a better look round.
Top from Maje, Trousers from Ralph Lauren, Shoes from Hermes.
Not my usual breakfast choice these days, but I was told I needed to try the wares Ireland has to offer.
Soda bread = yum
Potato bread = yum
10/10 would recommend.
It was very nice to meet this wonderful lady in person.
My Sam knows Caroline, they met ages ago at a charity triathlon challenge thing. And got chatting, Sam then brought my attention to Caroline’s deeds of daring do. She’s amazing! She just attempted the climb to Everest base camp!
If you ever wondered what activities you can do if you have a stoma! Follow Caroline Bramwell and you will discover there is absolutely nothing you can’t do!
I then took myself off for a walk round Belfast.
The company Chris works for has an office there, so I popped in to say hi and to leave my luggage there and headed to the Titanic museum.
Beautiful building, great architecture, but sadly for me I completely forgot I hate museums, especially alone with no one to give me a brief synopsis of all the plaques and signs…and this one has a lot of them.
So that’s my review. 🤭🫣😂
I’ve never seen the film, and I only know the basics of what happened, ie, it sunk.
So I ditched the museum for the rather fabulous Titanic Hotel next door and that was smashing!!
The only reading I had to do was the menu (I’m dyslexic, but I manage menus just fine! 🤭🥰😂).
The office was fabulous!
With the nicest receptionist I’ve ever encountered in my life!
Everyone is so friendly in Belfast! I was going to apply for a job, but the commute is a bit too far.
I had another mini adventure on the flight home.
There was lovely young lady on my flight out of Belfast.
Sadly for her we were so delayed that she missed her connecting flight to Italy.
So I asked the air hostess what the best course of action was.
She told me what to do, so I text Chris to asked him to delay picking me up, and took my new friend Zeinab to customer service to get it sorted and get her on the next available flight home.
Anyway the air hostess had said she’d get the flight for free because we were delayed.
But unfortunately we weren’t delayed enough to trigger the free flight policy
Zeinab was understandably very disappointed and upset.
But the customer service lady took pity on her and gave her a £35 discount on the ticket price. So it was better than nothing I guess
And the main thing is she managed to get on the 10pm flight, So that’s something.
There are five flights a day to Milan interestingly enough. If it had been an infrequent one she would’ve have been welcome to come and stay with us until she could catch a flight back.
Bless her, she’s a fully capable adult, highly intelligent woman, but she’s younger than Sam. So I felt I had a maternal responsibility for her.
And I’m sure she’d have done the same for me had I needed it.
She’s invited me to go visit her in Iran, or Italy, depending on which one is easier. So that’s nice. Xx
We hugged and bid each other farewell, we are still in touch.
My oncologist who saved my life was Iranian, so I have a debt of gratitude to pay forward.
Chris came and collected me and I headed home that evening with my travels and adventures over for a few days…although I’m currently in Spain on holiday writing this. 🤭
I was home for a grand total of 5 days.
More blogs to come, and if you got to the bottom of this one I believe you are now considered family, because that was a hard slog!
Thank you for reading my ramblings, thank you for your support and kindness. Genuinely very very grateful to you. Xx
*Some accounts to follow if you’re new to stoma life…
