Hi, it’s been a while since I reintroduced myself. I’ve had quite a few new readers lately, so it seemed like a good idea to say hello and explain who I am.
Hi, I’m Suzanne, I’m 51 now, and living a really very happy fun life.
Way back in October 2009, our son Sam, who was 13 at the time, was diagnosed with stage 3 nasopharyngeal cancer. It was a pretty rough time to say the least, I have blocked it all out for the most part.
During Sam’s hospitalisations I found the bowel problems I’d suffered from for many years were exacerbated.
So when Sam’s treatment was more at home based I decided it was time to get my pesky piles and IBS sorted out (which is the diagnosis I had been given for my issues throughout the 6 or 7 years prior).
Anyway, skip forward to Feb 2010 and one brief sigmoidoscopy later, it was discovered that I didn’t have IBS or piles, but I in-fact had a tumour in my rectum/colon.
The shock of a second cancer diagnosis in six months was insurmountable, I have no idea how we all got through it, we will be forever grateful to everyone who stuck around and helped support us.
It wasn’t easy for any of us, us 4 as a family, my parents, our friends, it was hell for everyone who knew and loved us.
I felt the weight of distressing our loved ones yet again, as much as I felt the fear of what the future might hold.
I got lucky in a weird way, because although I was only 36, I had an older person slow growing cancer, which is why I’m still here.
I too was diagnosed with stage 3 cancer.
This isn’t always the way. Which is why I do class myself as a lucky person. Often, the younger the person, the more aggressive the cancer can be.
We are very lucky as a family, because Sam and I are both alive and well, and living full lives. My dad was diagnosed with cancer a few years after Sam and I, and he too is very luckily alive and well. There is hope. There are many positive stories of survival out there. Even though people often bombard the newly diagnosed with tales of misery and despair. I beg the people of the world, please don’t ever tell people diagnosed with cancer about all the people known to have died from cancers, they really don’t need to hear it, it’s always screaming at them on the inside as it is.
I started writing my blog as a helpful offering to show others that life isn’t over just because you have gad cancer, and a stoma. I think we are negatively conditioned to think that it’s the end of the world, the worst case scenario, but my experience of life for the last 14 years has been anything but!
So here I am, having a blast, shining a light on what is possible when life gives you those dodgy lemons.
Most days I look like this, in my civvies, and then some days I get to go off on adventures, and for that I make the effort to get dolled up.
Top from Hollister, Jeans from M&S, shoes from Ugg, Bag from Goyard.
So that’s, me and my motivation for writing this all down.
I feared that life would be less than before, I feared the unknown. But my lived experience has been something of a surprise, and a delight.
Having my colostomy has not, nor will ever be a lesser life.
I discovered by accident, more than design that I am resilient and tenacious. And that life will not wear me down, no matter what it throws at me.
*****
It’s been a while since I updated my blog, no shock there, sometimes there just isn’t a natural break in what I’m up to, and being able to write it all down.
We’ve been on a few adventures, which is my favourite part of this life.
For me it’s a very important part, almost like a personality trait now, or a compulsion maybe.
I love travel and adventures, I love being able to go on them, I appreciate what a privilege it is.
I spent a long time pre late diagnosis unable to do anything like the things I get to do now, I was symptomatic of bowel cancer for about 7 years prior to my eventual diagnosis.
Then when I was in treatment I wasn’t up to much for obvious reasons, and then along came the surgery and that wiped me out altogether. More than I could have ever expected or imagined.
So the way I live now is in honour of that me, who was so weak and feeble, adventures were just a distant dream away.
Going out in the world can be a bit tricky with a stoma, not impossible, but it can definitely be slightly more troublesome and challenging.
There is always in the back of my mind “This might go wrong!” “My bag could fail me in some way!” “What if my stoma decides to fart in public!”.
(Day to day, when life runs smoothly stoma bag users do not smell. They just don’t, it’s a misnomer to think that they do. Stoma bags these days are fitted with fabulous filters, which means stoma users actually smell less than bum hole users, because all our output is filtered, including our wind).
My fear of bag failure or wind noise are almost terrifying enough to keep me at home. Potential bag failure smells and stoma noise are the only things that I struggle with, even to this day.
I live in constant fear of either scenario. But I can’t let it keep me at home, even if it takes my peace from me.
Because I think I’d rather risk the upset and potential humiliation, than stay at home leading half a life.
I know I would be an emotional wreck if either incident were to happen in public, but I’ll take the risk, because sitting life out, having gone through so much, is not an option.
I talk a good game of course, I promote positivity, and I do feel incredibly positive and happy in general, but that doesn’t mean I’m immune to the fear of worst case scenarios.
What I try to do is keep it in perspective. My bag could fail, and poo or smells could leak. Correct. But so could a bum, at any point. It’s not just stoma users who have unfortunate incidents. Any bum hole, at any point could have a serious failure, or come to that, just pass wind at an inopportune moment.
So there’s very little point in missing out on life, letting it pass me by, because of a potential risk of problems. If we all went by that logic no one would ever leave their house. None of us, bum holed or bagged.
So with fear squashed into the back of my mind, Chris and I went for a day out with clients, clients who I’ve only very recently met, but who are absolutely amazing people!
I have loved every minute with them. We clicked on a day gathering back in the summer, and we’ve been lucky enough to be able to get together a few times since. And they are so much fun my face hurts from laughing when I’m with them, which is such a good feeling.
Chris likes to plan something a bit different for his customers, a lot of construction entertaining is the rugby and football stuff, nothing wrong with that, but it’s nice to put a little more thought into arranging something a bit different.
Things that you’d like to do but haven’t gone through with booking it, like the ballet, opera, polo, flower shows, etc etc…but my very favourite is the Belmond British Pullman train trips.
Have a google if you’ve not seen anything about them before.
They are vintage train carriages from a bygone era - the golden age of train travel.
I appreciate if I’d been born back then I’d have been lucky to achieve the heady heights of chambermaid, so I would not have been gadding around on beautiful steam trains, dolled up in my finery.
(I don’t ever wish I could go back in time - I’m happy to enjoy the here and now. I got lucky in this version of life).
I bought this dress a few months back, it’s very comfortable and elegant, but it’s absolutely perfect for dressing with a stoma bag.
It has a pattern, for disrupting the outline of my bag, but not so much so that the pattern overwhelms and wears me, plus it has a belt to further disguise it. I would say this is the perfect style for me. A style I feel confident in, which is important for a long day out.
Dress from Ralph Lauren, Coat from MaxMara, Shoes from YSL.
These shoes are one of my all time favourites, I’ve had them for years now, but they are timeless, and gorgeous. And surprisingly comfortable, not always something I can say about my choice of footwear. There’s going to be plenty of time for comfortable shoes when I’m old and worn out, so I’m happy to withstand a bit of pain for a beautiful shoe.
This was an extra special occasion because the carriages were being pulled by a steam engine, which is a rare treat.
This particular journey was a round trip, along the Kent coast and back. It’s one of my favourite journeys because the scenery outside is just as gorgeous as the inside.
The food is always amazing, the company was even more so. Again I laughed until my cheeks hurt.
I feel very lucky to get to do nice things, but more than that I feel so lucky to meet such wonderful people.
I did have a slight issue on the day however, because for some reason my body decided it would be a great day for filling my entire bag. Which isn’t something that happens that often. But as I sat there enjoying the company and my surroundings, I could feel myself want to shrink smaller and smaller, to hide away, as my bag filled and filled.
I’ve no idea why it chose that day. But it did make me feel on edge, at one point I thought I might put my coat on to cover myself up. I felt so aware of my bag. Which isn’t something I think about most days.
When you have something that makes you a bit different it can be very isolating. And as I tried to carry on as normal I did feel that isolation creeping in.
I was very nervous of how full the bag would get, and whether I’d need to change it on the train, which would be difficult, both to do, and to dispose of.
As soon as the train pulled to a stop back in London I was in the side room grabbing my coat to put on, and gave myself a little more coverage and dignity.
I don’t mind having a colostomy, I’m totally fine with it, I wear bikinis on the beach on holiday totally relaxed and confidently, but I’d rather not be seen with a massive bulging bag of poo if I can possibly help it.
I still would rather have this life than not at all. So once you remind yourself how lucky we are to be here, anything that tries to steal your peace can **** right off. :)
Every day I get to make the choice of whether I leave my house and take part in the world or not.
And every single time, even if I feel isolated sometimes, it still beats being isolated for real, from actually choosing to sit life out.
****
…Then we had a bigger adventure planned. Chris finally relented and booked us to go to Venice. A place I’d only been to on day trips before now.
I catch the 6am flight out of Stansted, and the 10pm flight back from Marco Polo airport in Venice. And have a fabulous day out, It’s dreamy.
Venice is beautiful, I think it’s like an enchanted city from a Disney film. Everywhere you turn, every little lane or canal seems magical. It’s very walkable too, well, boat-able mainly.
It’s incredibly romantic, so I had always wanted to go with Chris, but he had no desire to ever go. The closest we’d been was The Venetian Hotel in Vegas!
But a few weeks back he told me to leave the weekend free as he’d booked a surprise!
…Venice couldn’t have been more of a surprise to me! He’d resisted for 31 years.
This trip was everything I’d dreamed about. To see Venice at night was incredible, and something I’d not experienced before. I was able to go to some other islands too, which I hadn’t had a chance to before. We had a blast, and surprisingly, Chris really enjoyed it too.
It was a big deal to me to go, so it will probably sound odd when I say I don’t feel any pressing need to go back. Bearing in mind how consumed I was with this desire to go with Chris.
It’s like I’m free now, free to book other places in Italy to see. Something I wasn’t able to consider whilst I had this yearning for Venice with him.
I’m proper good at Italian too! 😬
I was Grazie Mille-ing all round the city, sprinkling it everywhere I went, like I was a Venetian native.
Florence is on my radar, Milan and Positano, oh everywhere! I really want to discover more of Italy.
Italy (and France) have in my opinion, the best food, and the most effortlessly, stylishly dressed people in all of the western world.
I wish I had a fraction of that effortless-ness.
Top from Jeager, Trousers from M&S, Shoes and bag from Tod’s
This trip was a dream come true.
The hotel he booked was fantastic, definitely would recommend.
The room itself was beautiful, but it also had the most amazing roof terrace, and we got so lucky with the weather, that we were able to have breakfast on the terrace, which is very surprising as it was mid November.
This was not our expectation. It was glorious weather, which was such a treat.
The hotel makes their own croissants and granola, which were delicious.
The next day was spent gadding around on the ferry boats, which again, I’d recommend the 48 hour pass, because you can get your money’s worth. Catching them from all over the islands.
Top and trousers from Bella Freud at M&S. (the collaboration collection I mentioned last week. These trousers in Bella Freud stores are over £500. These almost identical ones from her collab with M&S were £89! Absolutely bargain, and feel fabulous on, it probably helps that you know you got an absolute steal too!).
Shoes from Louis Vuitton, Belt from Hermes.
It felt surreal to finally get to show Chris the sights.
He took to it pretty well, even the boat rides, bearing in mind both of us get very seasick. But we managed for the most part, with only a few nauseous moments. Hahaha.
We stopped for drinks part way through the day, I chose Caffè Chioggia because I had been there before. I knew that it’s a bit of a ‘look at me’ place, that draws a crowd. Chris did not.
I cracked up when he looked up from his drink to see about a hundred faces staring at him, taking photos and videos of the cafe, with us front and centre. His face was a picture…literally in this case! Hahahah.
We (I) booked a guided tour, which unfortunately was the worst we’ve ever had. Dear lord it was boring AF, which is incredible, as Venice is endlessly fascinating. But she made it quite dull, she couldn’t hold my attention - I appreciate I have a very short attention span, and low tolerance of boredom, but even Chris struggled. After an hour of walking down some of the coldest, draughtiest streets Venice has to offer (bearing in mind it wasn’t even cold, we were happily coat-less up until this point), we told the tour guide lady we had a plane to catch and departed the tour.
We went and sat in a piazza in the sunshine for some lunch, I was hoping the remaining tour wouldn’t pass by and spot us! Hahahah (which luckily they didn’t).
Travel with a stoma of any kind is daunting, but it’s definitely worth it.
*Always pack more supplies than you could possibly need. Put things in place to make the journey easier.
*If you suffer from very liquid output, try MorForm, or something similar, to make travel a bit easier.
*Try shorter plane journeys to start with and build up to longer ones. That said, I didn’t even follow my own advice, because six months on from my AP resection and oophorectomy surgery I was sipping mojitos on a beach in Cuba. Totally worth the risks.
My biggest wish that I have for people is that they don’t let having a bag hold them back.
Have bag - Will travel. 🤍
I love going off and seeing the world, I crave it. But funnily enough, I actually like being home again now I have my baby birds to come home to.
I didn’t enjoy our house without any pets in it. I love that it’s filled with noise and life again. It’s very comforting.
I especially love the personality of Augustus, he is a hooligan. A thug.
He’s obsessed with my phone, and when I won’t let him peck it or sit on it, he bites me. Hahahaha, it’s like having a moody teenager in the house. :)
******
Monday I had a couple of meetings, so I dressed accordingly.
Chris got home from work, and said that Ben needed some help with his shower, as it had broken.
Chris changed into his super slobby casual clothes, as you would for manual work.
Anyway on the way home he said “What’s for dinner?”
And I said that unfortunately, due to not wanting to, I hadn’t really given that bit any thought, so he detoured to the Toby Carvery en route.
We laughed so much in there because we drew a few double takes and side eye glances from other diners.
From the outside of our pairing it looked like we’d met for a date, and I’d got the wrong impression of where that date might take place.
Were we living a real life Lady and the Tramp? It did kind of look like it. 😬🤩😂
Dress from Zara, Boots from Hobbs.
The day before we were in a very expensive city, eating very expensive food…And then Monday night we were at the Toby in Braintree eating a roast dinner buffet. We are all class, but also highly adaptable. ;)
I like a night out with my bit of rough
🫣😬😂
He is my favourite, I find him very attractive no matter what his dress code happens to be, which is very handy as we’ve been together for 31 years now. :)
******
I have had a few meetings this week, so I like to dress for the occasion.
Shirt from Ralph Lauren, Jeans from M&S,Boots from Valentino
Some meetings require a bit more effort than others. And I enjoy choosing the right one for each.
I very much enjoy putting outfits together. I love shopping for clothes, I love experimenting with different styles.
Though I have found some suit me better than others.
Belted dresses are my absolute perfect choice. Because they are the least likely to cause leaks, that doesn’t stop me from wearing more daring choices, but I have to take the risks into account.
Life is for living might sound very cliched. But it’s true. I never want to sit any of it out. I want to make it count.
Keep well, much love.
As always, I’m happy to answer any questions that you might have about stomas. I can’t give medical advice because I’m not qualified to do so, but life experiences and support I can do. Xx