Reposted
The busy bit of my year has begun. Not busy in the conventional sense maybe, but busy for me.
The next few weeks are going to be full to the brim of weird and wonderful things. And I am loving it!
Why do I write about the stuff I get up to? Well, mainly because I never in a million years thought - pre surgery - that I would ever have the guts (if you’ll pardon the pun) to do anything in the outside world ever again.
So the last 13 years have been an absolutely surprisingly delightful adventure.
I can’t coach anyone to feel better about themselves. I have no qualifications, or any right to tell anyone how to feel about their life, or how to deal with anything they have been through.
All I do, all I have ever done, is say what I’ve been up to. And let people make their own choices and decisions about how to live their lives.
But I know from my own pre surgery expectations, it might be quite nice for people who are just beginning their own stoma journey or those who are struggling to find peace with theirs, to see someone living a perfectly normal - sometimes boring, sometimes happy, healthy life post op.
Before I had my surgery I didn’t know a single person who had a colostomy.
And even now, I don’t know anyone who has one in real life.
I follow quite a few people on social media who do. But that’s the extent of my interaction with people with them. Not for any reason, other than it’s simply never occurred.
I’m sure support groups can be a godsend, for giving comfort and support, and should be sought out if you’re willing and interested, a quick Google will find ones in your area.
I’m not active in the stoma community, other than share my thoughts and adventures on my social media platforms.
I like the idea of people seeing me do something or go somewhere and thinking “oh right, so I can go swimming, flying, bikini-ing, biking, eating, drinking, kyaking etc etc etc etc…” (although let’s face it, it’s mostly eating) ;)
I’ve got to be honest, I didn’t know that I’d be able to do any of it before I had my stoma. I truly thought I’d never leave the house again. So it’s been an honour and an utter delight to live the most incredibly beautiful fulfilling life.
Plus I wear a few pretty frocks along the way, and bagged and unbagged alike sometimes like them enough to buy them too. :)
My week started off well with two catch up lunches with friends.
One was with my friend who I met in hospital 13 years ago, the night before our surgeries.
We have kept in touch all these years. And it’s been very comforting to know she’s doing as well as I am.
She was really very poorly after her operation, it was really tough going for her for a very long time, she ended up staying in hospital for 12 weeks.
She had her reversal surgery 6 months after her initial ilesostomy surgery. And although it’s not been without its challenges for her, she too, lives a very happy contented life.
We’re both really very grateful to still be here. We are both very lucky.
Lunch was great, interestingly, often people can assume that having a reversal surgery is the best result. The best possible outcome. But it struck me as we ate our lunch, me eating a starter, main course and dessert, with gay abandon, while my friend had to choose very very carefully because all sorts of foods go straight through her, even now, 13 years later.
I know for a fact I’d struggle with living in such a precarious state. I hated my explosive and temperamental bowels when I was symptomatic of cancer, before I was finally diagnosed. The fear of accidents shrank my world.
The fear made me incredibly anxious and scared, constantly fearing the possibility of messing myself.
I know, for me personally, my stoma has solved so much of that stress. I like my stoma, I guess I love my life with it. It serves me well, far better than the hallowed reversal surgery would have done.
I realise it’s a case of horses for courses, some may very well prefer unreliable bowels through a rectum than have “the dreaded stoma”.
But for me my stoma is the reason I get to do all this stuff.
I do completely understand why some people loathe their stoma, I get it, I really do, but I don’t feel that way myself.
My stoma, my surgeon and my oncologist were the perfect trifecta.
The dream team. All 3 working equally as importantly to give me the best possible opportunity of an incredible life.
I’m not going to fret about what could have been. It’s not my lived experience. The here and now is all that matters.
I’m very lucky as I have a very well behaved low colostomy.
I have a sneaky suspicion that were I to have a high output uncontrollable ilesostomy, like Matthew Perry for example, I’d feel the same way about it as he did.
It would be nerve racking and draining. So I totally understand why some don’t feel the same as I do.
None of us are walking in anyone else’s shoes, we are just spectators in the lives of others.
For me it’s important to sympathise with those who are weary and worn down, and also take joy in the moments of pleasure of those living the dream.
Our catch up lunch was fantastic. We had seen each other a few weeks ago. We were bay buddies during our cancer removal surgery, thirteen years ago, and recently bay buddies again for our colonoscopy check ups.
Both of us are doing incredibly well.
Dress from DKNY, Boots from Russell and Bromley
We both had colorectal cancer. My friend was able to be reversed because her tumour was slightly higher up than mine was.
There is a cut of (what’s with all the puns today, they’re writing themselves) of tumour location, as to whether you can be reversed or not.
And I fell, luckily for me, in the not section. I would have really struggled with the “shall I get reversed or not?”
The desire of human nature being what it is, wanting to be back to “normal” can be very strong. Pathologically, desperately unendingly.
I would have been tormented and torn if a choice had been involved. I know I would.
So I always thank my lucky stars that a reversal was never on the cards, was never ever going to be possible. I think it helped heal me psychologically.
That option is gone. So my brain quickly decided to adapt to the new, and accept what is now.
I think that is one of the things I’m most thankful for.
I had a another lunch date that week with my best friend. I laughed till I cried. I came home elated and full (a common theme in my life).
With some lovely lunches and catch ups under my belt it was rapidly on to Friday, where Chris and I took a carriage of clients on a Murder Mystery ride on The British Belmond Pullman train. It’s definitely worth a Google if you’ve not heard of it before.
It’s one of my all time favourite things to do.
Dress from Zara, Boots from Holland Cooper, Bag from Chanel.
The train carriages are amazing, all original from a bygone era, it feels like you’ve stepped back in time, even if it’s just for the day.
Now I absolutely love the train, but if you know me you’ll know I have a pathological hatred of theatre, stage shows, musicals and all and anything AmDram - or live action.
Hatred is a strong word…so maybe I’ll try and salvage my reputation and call it a phobia instead.
This particular Murder Mystery production was my worst nightmare.
The previous experiences on board the train, were that of a BBC, Joan Hickson Miss Marple murder mystery production.
Very twee, twinset and pearls.
But this one was very much along the Tim Burton - Jonny Depp Charlie and the Chocolate Factory extravaganza.
And I’m definitely way more Team BBC Miss Marple ~ all day long. That said, any close action acting gives me the ick in general.
I wasn’t enamoured with this production.
But then, I’m a tough crowd. And I have to say my fellow carriage riders couldn’t have agreed with me less. They loved it. As most people would.
I am very weird, I make no excuses, I am who I am. :)
Accept me as I am, it’s easier that way. Hahaha
We had such a wonderful time. The clients were ones I’d never met before, and they were all absolutely lovely. fantastic day had by all.
We came home from there, full to the brim, the food and drink are never ending.
We settled in for an early night at home, as we had a very early start on Saturday morning.
We flew out to Vienna. Ben had booked in to run the Vienna marathon. And that was the intention until a week before the run Ben had a run in with a speeding driver.
Literally, while he was out on a practice run, in his attempt to avoid a collision with said car he stopped abruptly at a funny angle, stumbled and ripped his shoe apart and twisted his foot awkwardly.
I sent him to a private doctor as an emergency (it didn’t seem the sort of thing he could take up the time of an over stretched NHS system for).
The doctor felt that Ben had damaged ligaments and tendons in the foot and to not exercise for at least 2 weeks.
It was at this point we realised that what was going to be a marathon support trip, was now going to be a sightseeing one instead.
But Ben wasn’t giving in without a fight.
So he went to a Park Run early on Saturday morning to test his foot.
And then decided he wanted to at least attempt the Marathon the next day.
I don’t know where he gets his determination from because it’s certainly not Chris or I. Neither of us are likely to be running anywhere any time soon.
Dress from Oliver Bonas (there’s a OB at Victoria station, where the Belmond train departs from. I like to stop in for a browse and a buy on my way home from the train ride), Shoes from Gucci
We arrived in plenty of time for sightseeing. We stopped for lunch at a really good restaurant.
Ben had the Wiener schnitzel…well, when in Wiener and all that. ;)
I had cream of garlic soup, which was absolutely delicious. I was a delight to be with for the rest of the day. :)
Vienna is well worth a visit. We did the Big Bus open top tour. We’ve found over the years of visiting places, the best way to get your bearings is to take the tour busses and find out where everything is.
This was a very brief trip. So we did what we could.
Then it was early to bed in anticipation of the big race day Sunday.
I was hoping for the best for him, but want sure how far he’d get. I knew he could do a Park Run 5k on the damaged and painful foot. But didn’t know what he could do more than that.
Dress from Nobody’s Child, shoes from Gucci.
I took a selection of lovely outfits to choose from. What I didn’t think to pack though was cycling shorts for under my dresses. There was a lot of walking. And even more chaffing. My inner thighs were on fire by the end of the 2 days of walking around the city.
I’m talking chaffed to the point of bleeding. I guess this is where a thigh gap would come in handy, but that ship sailed due to my physiological shape and copious amounts of Apple strudel and vanilla sauce. ;)
Silky cycling shorts are great for preventing this particular injury. :)
He did amazingly well, we’re so proud of him in general anyway, but super proud that he finished at the half marathon mark, which meant he walked away with a medal for his efforts.
Although is wasn’t what he originally was aiming for. But definitely more than we had expected him to when we flew over on Saturday.
We went back to the apartment for a rest and a well deserved shower for him, then headed out for more sightseeing.
There are some fantastic museums and galleries. Plenty of classical music concerts on offer - it is the home of Mozart after all, and no trip to Vienna would be complete without a trip to The Spanish Riding School.
I couldn’t go to a show as Chris is deathly allergic to horses, and apparently it’s wrong to expect him to suck it up and not die of horse hair poisoning hahaha
We did go to the stables to have a look round and they are spectacular.
Tired, in pain, but not defeated…and that’s just me and my inner thigh burns, God knows how he felt after his run! Hahaha
Monday was very exciting. We embarked on our first European train journey. Vienna, in Austria to Budapest, in Hungary.
It was so simple…Once we caught the right tram to the train station we were sorted.
How did anyone travel anywhere without Google Translate and Google maps (this blog is brought to you by Google products). Haha hahah
We boarded a tram. And Ben quickly realised we were heading away from our intended destination on the little map on his phone he was following.
So we hopped off, crossed the road and hopped on the right one. Simple when you know how. ;)
The train station was easy to navigate. We boarded our train with plenty of time to spare.
I know it might sound a bit sad, but I thought it was very exciting.
Travelling country to country by train.
Why were we off to Budapest to start with?
Well, in 2018, Chris, I and the boys did a west coast road trip in America. One of the stops along our route was Beverly Hills, and it’s here I had the best (non Indian) meal I’ve ever had!!
I’ve dreamed about it many times since then. My heart and stomach were being pulled towards Spago in LA.
Well, Ben happened to see that Wolfgang Puck, of Spago fame had opened up another Spago - in Budapest!!
I have no idea why he chose Hungary, but I’m very happy that he did.
So off we went on the train to our next stop.
Budapest is beautiful. We didn’t even scratch the surface of the city, but what we did see, we enjoyed very much.
Tracksuit from Ralph Lauren.
Chris was in charge of booking the trip.
He chose some absolute treats. We stayed in an apartment in Vienna which was beautiful.
And he outdid himself in Budapest.
He chose such a beautiful hotel. It’s in a converted Victorian shopping mall. And it’s stunning!!
I’d definitely recommend the Párisi Udvar Hotel. It’s a great hotel, fantastic location and the spa is amazing!
Dress from Belstaff, Bag from Goyard, Shoes from Christian Dior.
The reason we came…Spago!
It made me happy and sad to think of the meal in Spago from 2018…because it was sensational, but I know I may never go back again. The journey nearly kills me. I was ill for 8 days with jet lag when we got back last time.
So imagine my delight when I going out there’s now a Spago a 2 and a half hour flight away. :)
I can see at some stage, just flying over for a meal and then coming straight back. It’d definitely be worth it.
We will have to stay at least one night though as Spago doesn’t open at lunch time.
Heaven…
Winner winner chicken dinner! The jus on this dish is like angels have made it.
What a perfect way to spend a weekend.