I keep having to repost this. The site keeps crashing.
I decided after a few weeks of pushing my luck wearing jeans, I’d better give myself a fighting chance of preventing getting blocked up over the weekend, and wear some dresses.
Knowing how important the weekend was to me I definitely wanted to avoid anything that might prevent travel. Constipation can absolutely floor me.
I guess it’s something that is unique to stoma users - choosing an outfit not only based aesthetics, but also on leakage risk factors.
Jeans = High risk
Leggings = moderate risk
Dresses = low risk
Never in a million years did I think that would be how I would be choose clothing in the future, pre diagnosis.
I had no idea what lay ahead for me. I had no idea that the “IBS and piles” would actually turn out to be cancer.
I had no idea I’d go out of my way to dress impeccably in the future. I’ve always enjoyed clothes, but now I feel it’s it’s imperative to dress well.
Should a bag leak occur while I’m out and about, who are you going to suspect?
It’s definitely not going to be the lady all dolled up. Human nature being what it is means we’ll have an unintentional bias and assume smartly dressed people don’t stink of their own s***.
Well, that’s my hope anyway. I dress with great care to make sure that I’m not the main suspect. Apologies to anyone near me, dressed casually, if I happen to have a bag leak…because yes, I’m deliberately trying to throw you under the bus! Hahaha.
For me leaks are rare. I’ve had pancaking issues a few times (where the adhesive base plate lifts away from the body and out-put escapes through this route).
I have had filter failures, which means smell escapes, but no physical matter.
But I have a colostomy, so my output is solid, much like people with their original plumbing, therefore messy big leaks are less likely.
Smelling is one of my greatest fears, that and dying…oh and the classic my likability in general.
Given what my body went through, being alert and aware of my risk of leaking is a small price to pay for surviving.
I’m at peace with the here and now, but that doesn’t mean that I’m not hyper aware and emotionally very sensitive to leak risks.
Does it stop me from living life? Absolutely not!
But does it play on my mind? Absolutely yes!
Dress from Michael Kors, Bag from Gucci, Boots from Russell and Bromley.
I wore dresses all week. I got myself all dolled up for my wound check appointment, for the mole removals I had the other day.
While I was there I decided to kill two birds, and pick up my bowel prep for my 5 yearly colonoscopy appointment coming up next week.
I got chatting to the nurse, she didn’t know my history, and she was kindly explaining bowel prep to me.
I reassured her I knew the drill and explained my situation.
She said “oh my goodness that’s a lot, you don’t look like you’ve been through all that and I definitely hadn’t realised you have a stoma bag on!”
BINGO!
Mission accomplished! :)
I often think the assumption and misconception is that anyone that’s had cancer becomes a withered feeble shell of a person.
Well hello world! Vibrant, vital survivor here!
(Actually through treatment I was pretty much like this too, I didn’t want the sympathetic glances and side head nods aimed at me. I slapped more make up on the iller I became.
I’ll accept sympathy for a stubbed toe or that mutant bee sting I had a couple of years ago. But I definitely refused to be a “victim” of cancer’s ruthless visit).
Dress from Sainsbury’s, Boots from Jimmy Choo
And then we come to Friday where I flew off to Greece for another meeting. I call it a medical conference, because firstly it sounds fancy ;) ….and secondly it’s a more simple explanation of what the meetings actually are.
Back in September I was invited to Athens to be a participant of a meeting of European colorectal surgeons, as a lived experience patient representative.
And I must have done something right as the lead surgeon/organiser invited me to another one.
I’m was honoured to be invited, and absolutely delighted that I was free, and able to attend.
So Friday afternoon I headed off to Thessaloniki in Greece.
Dress from Whistles, Shoes from Gucci.
The weather was forecast to be pleasant and spring like. I needed a light weight jacket, so I bought myself my first denim one.
Oh come on! What did you expect, I’m always late to the party! I only had hummus for the first aged 39, I only went to Greece for the first time in October 2021, so getting my first denim jacket at 49 and three quarters cannot, absolutely cannot come as a surprise! ;)
Jacket from Primark.
It was only £17, I felt it was worth the risk of whether I actually liked it or not at that price.
…turns out I actually do!
Chris was working, so he had a driver pick me up and drop me to the airport. And poor said driver had to step in and become my temporary official photographer…a very privileged position that Chris currently holds, but I thought Alan did rather well. :)
I was so excited to be going to the meeting, but I was also incredibly nervous, actually, I was beyond nervous, I was absolutely shitting myself (so it’s actually fortuitous that I have a stoma bag!).
This particular meeting was attended by elite colorectal surgeons and doctors from all over the world.
They’re titans in their field. They are top top dogs. If they were celebrities we’d be talking Brad Pitt’s and Angelina’s!
And then there’s me, a middle aged, grandma from Essex.
I don’t ever find people intimidating, people are people, we’re all the same at the end of the day, but I do find situations daunting and intimidating.
And this particular situation was the most daunting I’ve ever had.
Again I was there as a lived experience patient (former patient).
There’re no guarantee that people so high up in their professional world would want to hear from a patient perspective.
BUT, life has a way of pleasantly surprising you.
They were the most amazing group of people. So welcoming, kind, genuinely interested (and interesting), incredibly respectful and all round good people.
You might expect there to be rampant egos amongst such high ranking professionals.
But nothing could have been further from that expectation.
Honestly, I was blown away by how warm and welcoming they were.
I felt extremely privileged to have been invited to the table and sit amongst them. And I was made to feel like I belonged there (whether I actually did or not).
*If you were thinking of getting into Public and Patient involvement/ lived experience patient panels I would definitely recommend it!
Your experience can add a wealth of knowledge to the experts at the coalface.
I’d say it’s probably best to go in with an open mind, not one that had been tormented by anger at the experience you had during treatment.
I think it would potentially be very difficult and traumatic to relive moments that caused you great stress or harm.
That’s not to say you shouldn’t join a panel, but just that you should proceed with caution and care to avoid any further distress.
I’m in a very lucky position because although some parts of my treatment didn’t go quite to plan or to a standard I would have liked or expected, it hasn’t left me angry or upset in anyway.
Would I have preferred to have been diagnosed sooner? Oh hell yeah!! But I don’t feel the misdiagnosis was intentional or malicious. It was what it was, just one of those things.
I moved on and thankfully lived to tell the tale, and that is really all that matters to me.
I acknowledge it was traumatic, but I left the trauma back there, in 2010. It doesn’t haunt me or disturb me.
And that comes in handy for giving a good level of perspective in Patient panels.
So first things first, I arrived in Thessaloniki airport and was greeted by the driver the committee had arranged.
This was very handy as I don’t go anywhere by myself usually.
They dropped me to the hotel - which was absolutely stunning - where I checked in…for the first time in my nearly 50 years, by myself! Yes, that is correct, you heard me right, I’ve never stayed at a hotel by myself before. I’ve been married since I was 22. Having met Chris when I was 20. So from 20 to nearly 50 I have always been with him (by choice, because I happen to really like him) :)
I found staying at the hotel more daunting a prospect than meeting the surgeons.
But as with most things in life the fear of the unknown is not an indicator of reality.
I dropped my bags to the room and then headed out to meet some of the people I had already met at the meeting in Athens last September.
Again walking around at night In Thessaloniki was as blissful, and as safe feeling as it was in Athens.
I wouldn’t walk round in my local area at midnight, but I find Greece a very different prospect.
At midnight there are so many people, it’s alive and vibrant, with many families out and about, with children in tow, it feel like 7 o clock in the UK.
As surprising as this is, I’m not a strong confident woman. But I’m a person who enjoys stretching myself to see what happens.
I went down to the foyer of the hotel and asked the concierge where the bar I’d arranged to meet the others in was. He very kindly talked me through the directions. I must have had a look of a rabbit in the headlights, because he suddenly said kindly “come with me”…
…and proceeded to walk me all the way through the streets to the bar in question. ;)
I did find my way back by myself after though.
Then Saturday I went for a little explore of the city, it’s very beautiful by the way, and well worth a visit.
Obviously I was reduced to mirror selfies as I was sans official photographer.
This is the hotel we stayed at. It’s so lovely. And the staff are very friendly and helpful.
I’m assuming people have rubbed this part of the statue of Aristotle shiny for good luck and wisdom…rather than some toe fetish kink.
I personally didn’t rub it because the wisdom I already contain tells me to not touch something that’s had a million other hands rubbing it.
…And as I still haven’t ever had covid I think my germ phobia and wisdom serves me well. ;)
I met up with a couple of people who were also attending the meeting for lunch and a wander around the town. I can confirm there are some fantastic bars to sit and watch the world go by.
And then in the evening it was time to attend the meet and greet dinner with all of the participants.
Dress from Tesco, Shoes from Gucci.
The meet and greet dinner was as expected a time for all the parties to get to know each other.
And as an outsider I didn’t expect to feel so welcomed and appreciated.
But I had a wonderful evening. Thankfully the meal was within the hotel itself, so limited walking time.
(You know I was gloating last week about how my foot stitches were healing well, and not painful at all. Well, my smugness has come back to smite me. I’m not sure what happened but I imagine walking round in running shoes and socks, made the wound site too hot and sweaty, and it’s now inflamed and infected. It’s now more painful than it was just after I had it done. So bravo me!)