Letâs start this week with a recap of how I came to write this blog, there are a few reasons;
Mainly I wanted to showcase being able to dress well with a stoma. I had thought that it would be impossible before I had my surgery. I thought it would be just a case of baggy, shapeless, oversized clothes, but actually being able to dress well has been a revelation.
What do I hope people take away from my blogs? Well, what I really really want people to know is that life will settle back into the ordinary once youâve recovered from the surgery.
It will just be a new normal.
The recovery is a hard slog, so be prepared to be a patient patient. Itâs not easy, itâs frustrating and hard work. With a rollercoaster of one step forward, two steps back. But once you turn that corner (youâll know when you have) youâll be flying, youâll be able to find your groove again, albeit a new one.
New doesnât necessarily mean worse. I can attest to that, my life is a million times better now, than the misdiagnosed, symptomatic years.
Will you ever get to the position that Iâm in where you prefer your stoma to the old fashioned plumbing? That I canât say for sure.
I do know that most people, if not all, find a way to live a good life with their stoma, even the ones who hate having a one - and there are many, who live a good life.
It seems hard to comprehend pre op that a good life is possible, but I promise (Iâm 99.9% sure) that you will settle into the new way of living.
And hopefully find the peace to live bigger and bolder than you ever thought possible.
I found myself in a place of utter calm and peace with my situation as soon as I came round from the surgery. I think this is particularly odd, seeing as I was so traumatised going into it. I donât try and understand what happened in my brain to make such a drastic change, but I am so grateful for it. Itâs what I wish for everyone else too.
Our family had already been through so much unimaginable trauma by the time I was eventually diagnosed.
In October 2009 our at the time 13 year old son, Sam was diagnosed with stage 3 Nasopharyngeal cancer. It was a living hell, he went through so much, we all did. Cancer leaves its mark on everyone.
It was 6 months after his diagnosis that I was diagnosed with stage 3 colorectal cancer.
(Sam is very well and recovered now, we are a very lucky family)
So short version of my story is I was diagnosed with stage 3 colorectal cancer in 2010.
I was told the treatment for that would be chemotherapy, radiotherapy an AP resection and oophrectomy.
*An Abdominoperineal Resection (APR), also known as an AP resection or abdominoperineal excision of the rectum, is a surgical procedure to remove the rectum, anal canal, and surrounding tissues. This is typically done when a tumor is located low in the rectum and cannot be removed with sphincter-sparing surgery. A permanent stoma (colostomy) is created as part of the procedure to allow for waste elimination.
It was a lot to take on board.
In fact when I was first told I remember thinking âoh fuck, thatâs it, if I survive all the other things he just said, my life will be overâŚas if Iâd go out like that!!?â
So I write this blog as a love letter to that lost soul who thought sheâd never go outside her home again.
Rather dramatically I felt Iâd be a shadow of my former self. And life would be less than I had known before.
WellâŚwhat can I say?âŚ
When life gives you lemons - make lemonade
What doesnât kill you makes you stronger
And still I rise
âŚAdd positive mantras Ad infinitum!
My life is incomparable to the one I had before, but unexpectedly, for the better! If anything, my surgery was a complete factory reset.
I guess it was exactly that, literally, seeing as I lost all my blood during my op, due to springing a leak on the table.
Pre diagnosis I hadnât noticed how small my world had become as I got slowly more sick, and more symptomatic due to the cancer growing unchecked in my bowel.
(*Not left unchecked to grow by my actions. I just want to point out that I went to my GPs many many times a year for years, and I was always told the same thing - IBS and piles.
Iâm not angry about the misdiagnosis, just disappointed. But in all honesty, the outcome would probably have been the same, even with earlier detection, the tumour location was problematic).
I had been suffering bowel cancer symptoms for years, but learning to adjust my life to live round the bowel issues caused my life and world to become very small.
You know that saying - that if you put a frog in boiling water it would just jump straight out, but if you put a frog in cool water and bring it slowly to the boil it would remain in the pan ~ well hello!! Iâm the frog! That was me!
Post cancer my life has been nothing short of glorious. Spectacularly so.
I went into the operating theatre crying my eyes out, mourning the loss of a life I thought was gone, only to come round after the op to look down at the newly formed stoma and thought âoh, is that it?! oh no problem, I can do that!â
Much to the shock of everyone around me.
Like I said, it was a factory reset. Physically, emotionally, spiritually. It was an awakening.
Never ever ever would I sit back and let life pass me by again. Never would I allow people who donât bring me peace interrupt or disturb my life. Never would I do things I donât want to do, not even for a minute. Never would I take for granted the life Iâm living.
I appreciate every single second extra I get here. I make the most of it all.
I know Iâm probably meant to say at this point that materialistic things donât matter, but **** that!! Weâre here for a good time, not a long time!
Bring on the shiny, bring on the sparkles, bring on anything that brings joy. And most importantly donât let anyone tell you what you should or shouldnât be enjoying.
For the eight years prior to my diagnosis I didnât fly anywhere. I was too fearful of bowel related accidents happening on earth, so Iâd hardly volunteer to be in the sky and risk them!
So once I realised that that wasnât an issue anymore - Have bag can travel! Have bag will travel - And I have.
Six months to the day after my surgery I was laying on a beach in Cuba, in a bikini, sipping mojitos.
I have flown hundreds of times since 2010. I fly somewhere once or twice a month, most months of the year. I refuse to miss anything I want to see.
Iâm very defiant, always have been, itâs part of my natural charm đŹđ. But I think that defiant streak helped me restart my life after such a catastrophic event.
I will not be told how I should live or feel about body altering surgery.
I live life exactly how I want (I canât claim all the credit for this joie de vivreâŚbecause I have a secret weapon, and his name is Chris.
He is the first person I ever met in my life who saw me as some goddess type creature, who he wanted to lift up, and make me believe in myselfâŚand 32 years later heâs still doing that). I always say to people Iâm a very lucky person, because I am very aware that I am, I can physically feel the luck.
Part of the joy of life is saying yes to things, even if they scare me a bit (* caveat - excluding anything involving heights, heights is not my thing).
I was invited to a meeting with the EAES (European Association for Endoscopic Surgery) guideline committee about 4 years ago by a chap on twitter.
And since that time I have attended many meetings with them, and then last year I was invited to become a member of the guideline committee, and a part of the EAES community. I am so very grateful to Stavros Antoniou for reaching out and giving me the opportunity to be involved.
I absolutely love being part of it, and I know that once again, I am incredibly lucky to be able to be involved.
I have just come back from the EAES congress in Belgrade Serbia, and what an adventure it was!
Had I ever thought of visiting Serbia before? Nope! Having been would I go back? Would I recommend it to other people? Was it worth a visit? Yes, yes and yes! Most definitely!
Itâs a really beautiful place, Belgrade is a real hidden gem.
Reasonable prices, great food, gorgeous friendly people, some fabulous architecture, and sites and sights. 10 out of 10.
Oh and all public transport is free for everyone to use, so yes, I did catch a bus.
I attended the congress last year in Maastricht, but I had to leave very early as I had to get back for the Guards Club Cartier polo semi finals (like I said, I live a blessed life, and in my opinion, my stoma has facilitated that, rather than hindered it).
But I was able to stay much longer for this one. I had meetings with the committee Iâm on, but I was also invited to give a talk on my life experience and how I ended up as a participant in patient perspective, highlighting the importance of patient experience being involved in guidelines and research.
I was really very lucky that two of surgeons I know and adore were coming from the UK too, so they stayed at mine the night before we flew, so we could all travel together (I canât tell you how grateful I am to them for that. I love adventures, but I prefer to have them with others).
2.45 am ready for the airport, I will say at this point, this has got to be my last ever early morning flight, I canât do it, it fills me with dread in the lead up and it feels rotten in the moment.
We arrived in a very hot and sunny Belgrade.
We arrived with enough time for me to get re-showered and hair washed before the guidelines meeting. I feel like I canât function without a hair wash, but there was absolutely no way I was getting up any earlier than I needed.
And then off I went to my meeting.
Everyone in that room is academically far superior than me. They have these incredible skills and careers, I see it, I know it, but they are so kind and gracious, they never make me feel it.
They treat me as part of the team, because as Stavros always reassuringly saysâŚâthatâs because you are part of the team suzanne!â
Dress from Ralph Lauren, Shoes and Bag from Chloe
I felt this pin strip dress gave a more office formal feel, whilst still looking nice and feeling comfortable.
The Crowne plaza hotel Belgrade is an absolute treat, voted (by me that is) the best meeting nibbles Iâve ever had - nuts, fruit and milk (my life staples), but also the hotel itself, where the meeting took place, had the best air conditioning Iâve ever experienced. I appreciate this is a weird thing to even notice, but Iâm really sensitive to air con, itâs always either too hot or too cold. I can never get it just right. But for the week I was there I noticed I was exactly the right temperature ~ at all times. I was really very impressed.
We had a very productive meeting. A lot of things were sorted out.
I will be looking for people from mainland Europe to join us for a few meetings for next year, so please get in touch with me for further details and information. Our patient perspective is so important to help future patients.
But the contributor does need to be from a different country to me as we already have the UK voice at the table.
Our role; we listen to the discussion ,and give our opinions on what would be the preferred option.
Itâs a great way to give back and help with the emotional healing process.
This sign on the tables in the restaurant made me laugh out loud.
We google translated it, so I took a screen shot for your enjoymentâŚ
The ministry of health hits different in Serbia! đŤŁđŹđ
Once our meeting was over we had time to go and explore a bit, and then out for dinner in the city in the evening.
It was really good. The city has so many lovely lively restaurants and bars. Itâs definitely worth a visit.
Lisa and I were feeling the effects of the early start, so we left the others to it and walked back to the hotel. It feels very safe at night, itâs very beautiful too.
Then on Tuesday it was time to attend the meeting I had agreed to speak at.
Did it go as well as I had hoped? No, not really. It was my first time talking to a group so my nerves got the better of me and I was speaking very shakily and I lost my train of thought part way through. It must have been like listening to a befuddled Larry the Lamb for them! đŤŁđ
I did my best, and it was appreciated by the attendees. I had such lovely feedback.
I very much believe in patient participation, so I always want to raise awareness and understanding of it.
It was only afterwards when I spoke to some people who had been there that our family story is quite a lot to go through.
âŚAnd I missed out a fair amount of our traumatic experiences too, probably for the best, seeing as what I mentioned was shocking enough as it turned out, without all the other desperately sad details too.
I have forgotten that it must be quite shocking to hear it for the first time. I have compartmentalised it, that was then, this is now, life is good.
Dress from Nobodyâs Child, Shoes from Chloe
I am very grateful to these wonderful, accomplished women. They are amazing, Iâm a big fan!
Thank you Marina and Lisa for the invitation, happy to help any time you need. Xx
Once Iâd finished my bit I went back to the hotel to sunbathe by the pool to decompress from my talk.
Yes, I do sunbathe in bikinis. Why wouldnât I?
Well, apart from society telling us what rules itâs mapped out for us.
The list of rules put on us are as endless, as they are draining;
You have to have the perfect body to wear a bikini, you have to be young and beautiful, you canât be overweight or old, you canât be a grandma, you canât have a stoma and wear oneâŚyou canât you canât, you canâtâŚpsssssstâŚIâll let you into a little secret⌠you can do whatever the **** you want to do!!
Every body is a bikini body!!
(*If you want to wear one).
Like I said, Iâm defiant, and I want an all over tan (covered in factor 30 and 50 of course).
Only I get to choose what I wear, Iâm not sub contracting out decision making about me to anyone else.
Bikini from Hunza G
Then it was time to get washed and redressed for the opening ceremony and drinks reception.
Belgrade was unexpectedly delightful, there are a few main areas that have nothing but quaint bars and restaurants. The sounds of traditional live music and the smells of delicious food comes wafting through the streets. It is fabulous.
The next day I got up for breakfast, with the intention to hit the shopping mall after.
But as I sat down I got a notification on my phone for a presentation by one of the fabulous surgeons I worked with on a guideline development a while back.
I most definitely was not going to miss it.
Top and shorts from Ralph Lauren, Shoes and belts from Hermes.
Back to my room for a quick change and off to the presentation.
Dress from Me & Em , Shoes from Hermes
Iâve said many times that this association is full of titans in their field.
And Iâm lucky enough to now call some of them my friends.
These events are a chance for them to network, and for me a chance to catch up with people I admire and adore.
Girl gangâŚ
My friend Maria and I were searching (me frantically - and Maria calmly) for the right room, I was getting more and more panicked that Iâd miss it, but we finally worked it out. It was a fabulous presentation, thank you Alberto for your kind words, they meant the world to me, thank you so very much. đđź
All I have ever set out to do is bring a new perspective to life with a stoma. To show that itâs most definitely not the end of the world, nor is it the worst case scenario ~ but very possibly a gateway to health, wellbeing, happiness and adventures.
Does anything about my life look less than? Worse than?
Iâm so glad that Iâm able to make a difference to people coming after me, so they know what is possible.
I didnât have that, and I think itâs so important to share my experiences, to give hope to others.
Hope I would have clung onto pre op.
Maria and I then headed out to have a look around, and to get a few bits at the mall.
Iâd run out of sun cream (it was so sunny, and hot I used way more than expected. And Iâm most definitely not going to risk any more skin cancer incidents if I can help it, Iâve had enough of them cut off my body so far).
Old Belgrade, right next to the newâŚ
Walking into the mall was like being in a Westfield shopping centre anywhere else in the world.
Iâm probably not meant to find it comforting, but I do.
Like when I go to the new malls in Mumbai and New Delhi. Of course I love the chaotic little stalls selling their wares in the massive outdoor markets, but I also love familiarity.
Back to the hotel for another quick change.
And to make the most of some free time and the pool.
Bikini from Hunza G
Then another shower and hair wash to get ready for the EAES Presidentâs dinner, honestly Iâve never been so clean as I was here đ
Dress from Maje, Shoes from Holland Cooper, Bag from Goyard.
This dress has got to be one of my all time favourites now. Itâs like it was designed with a stoma wearer in mind. Iâve ordered another one in a different colour way too.
Itâs the most perfect dress for anyone who is conscious of a belly bulge.
I know that I am, I have a stoma, two hernias and hormone weight to contend with. Any dress that flatters my figure without having to compromise on style is a win.
I was so looking forward to this event, and to be able to catch up with some of my favourite people.
I adore Pat, if youâve not listened to her podcast with John Monson I would recommend that you do, itâs a fascinating, enlightening and an extremely entertaining interview.
The dinner was held in a restaurant within a castle in a fortress, thereâs also a nightclub in there too.
I thought it was the most fabulous use of a historical site. Using it for what it was initially intended for. I canât imagine the National Trust opening a nightclub in one of their properties. đ
A fabulous night, with fabulous people.
Then back to the hotel, for me to head to bed (I am a lightweight, I think being sober has itâs benefits - obviously, but it is a bit of a challenge to enter into situations where other people get the chance to merrily enjoy themselves).
I am so very grateful to be invited to the conference, and to the events within the event.
The next day I was up bright and early for mine and Marinaâs journey home.
Top and shorts from Ralph Lauren, Shoes from Hermes.
Obviously I was going to do some last minute shopping. đŹđŤŁđŤ đ
I sent Chris a message saying I was shopping at the airport shopsâŚ.I then this photo Marina took to Chris, and his response cracked me up! đ¤Šđ
*Obviously I did not buy this âoutfitâ made of dental floss. Iâm all for wearing a bikini, and body confidence, but nobody, absolutely nobody whatsoever would want to even imagine my body oozing out of this little number. đŹđŤŁđđŠˇđ
Iâm body confident, not delusional. đ¤Šđ
Then it was time to say goodbye to one of my favourites, the absolute legend, Marinađ¤Šđ
âŚand for me to come back to earth after being on such a high.
Iâm so looking forward to more events with EAES, I have a guideline meeting in Athens in November this year.
I have two more guideline meetings next year in Athens, and two congress meetings, one in Porto and one in Athens as well.
At this point Iâm thinking of moving to Athens, it certainly would save catching early morning flights. đ
I get to combine using my survival and experience for the benefit of others, and travel. What more could you ask for in life?
I will be looking for people to join me for future guideline meetings.
Like I said, with a focus of getting people from other countries involved. Please look out for any new opportunities for patient participation.
I have got my first Athens meeting sorted with a new patient partner for this coming November.
But I am looking for someone to join me in Valencia next March for a different association I have agreed to help. So if you live in mainland Europe, and you would like more info please feel free to contact me.
suzanne@gladragsandbags.org
Itâs volunteer work, but your hotel and flights are paid for, it is incredibly rewarding.
Iâm very lucky that Chris is very passionate about me being able to use my time for the greater good.
None of the projects Iâm involved with will benefit me directly (god, I hope not anyway). But I want to leave a legacy of volunteer work on projects that make a difference for other people.
Iâm lucky that I donât have a job, I am just floating around this life waiting to catch any interesting opportunities that pass my way.
I have offered my services to a few of the surgeons I met at the congress, they were very kind, and checked that it would be okay to disturb me.
âŚI literally have nothing else to do, so it will save me from scrolling through social media platforms all day. I think we can all agree that it would be a slightly better use of my time.
That said, I wouldnât be involved in any way had I not been active on twitter to start with.
Iâm often asked about my plane trips.
So hereâs some practical advice for travel. I travel a lot, I do one or two trips abroad a month.
I know, Iâm very lucky to do so.
One thing I do is offset the carbon footprint of my air travel. I think itâs the right thing to do in the circumstances.
I pack all of my stoma supplies in my hand luggage. I take some extra in my hold case, but Iâd never take the risk with the bulk of it.
I personally donât have a sunflower lanyard as I donât feel any need for it for me. But if you are nervous to travel it might be worth looking into the scheme. Whatever works for you really, whatever gives you the freedom to get back out in the world do it, grab any opportunities with both hands.
I use rehydration powder in my bottle of water to try and help prevent dehydration. That said, I have never successfully achieved this.
Which means I am perpetually dehydrated whilst travelling. Which in turn means I am always chronically constipated.
Although unpleasant and uncomfortable, and most definitely not fun it does come with some bonuses.
*Just to be clear I am not encouraging people to get themselves constipated. That would be less than ideal, downright ridiculous, and possibly dangerous.
(I do remember I very nearly had to seek medical attention in India for such terrible constipation I could barely stand up straight. Yes, constipation - in India. I like to be contrary, even my intestines are deviant).
Iâm merely saying I take the positives from the position I find myself in every time I step inside an airport.
Travelling with less output, or hard/solid output is easier than loose output, with far less chance of leaks.
Also, constipation is natureâs Ozempic (not an ad, other GLP1s are available đ) because being so backed up lessens hunger. Which meant I ate far less than usual. When I got home and weighed myself Iâd actually lost a pound in weight. Which made a nice and unexpected change. I gained 8lbs in a week in Corfu last month! đ¤Šđ
It also means less bag changes too, seeing as I was only producing tiny amounts of waste.
For those travelling with a more liquid output than I ever do, there are products you can add to your bag to firm up the contents.
Itâs definitely worth looking into if you have concerns about leaks on a flight.
Since Iâve been home I have been trying to cure my constipation, Iâve consumed pretty much a whole bag of chia seeds, to no avail!
I pre soak mine in full fat jersey cow milk. 1, because chia seeds work best if pre soaked, and 2, because any chance to get jersey cow milk in me is always encouraged. :)
So here I am back in scorchingly hot EnglandâŚI canât actually believe our luck. âď¸đ´đŤ
Itâs time to get the good stuff out of the wardrobe. The clothes that only usually get a look in on holidaysâŚ
đ True story!
Top and shorts from M&S, Shoes from Jimmy Choo
Dress from Jigsaw, Shoes from LK Bennett
We had to be at Luton airport on Saturday afternoon to pick up a friend, so Chris had the very bright idea of heading over to the Hemel Hempstead snow dome beforehand.
This was a significant moment, as this was the first time heâd been back on the snow since that snowboarder crashed into him - breaking his shoulder back in January 24.
It was so good to see him back doing what he loves, and heâs already planning on booking to go skiing next year which is great news. I do love a walking round in the snow drinking hot chocolate holiday!
I can ski, but I donât ski. đ¤Š
Although I have asked if we can book it for after we get home from India next Feb, you know, just in case đŤŁđŹ
I enjoyed being in the minus 6 temperatures of the snow dome viewing gallery, rather than being in the 32 degrees outside.
Dress from Me & Em , Shoes from Gina
My baby Ben came for a ski practice too.
Me doing what I do on every ski holiday.
Some of us are built for skiing, and some of us are built for packing cute apres outfits and drinking cocoa.
Then Sunday Chris said heâd booked a surprise for me. So we headed to London early for breakfast in The National Gallery, but more than that heâs joined as a member. You get access to all of the special collections without having to pre-book, with the added bonus of a members only restaurant, bar and lounge area.
Itâs fabulous. I love impressionist paintings, and The National has some fabulous ones. But the whole gallery is incredible.
We got chatting to an attendant there called Alan, if youâre in the gallery look out for him, heâs so knowledgeable and funny, he told us about his favourite painting in the collection, so we went to have a look at it. It is a remarkable work.
Iâd never heard of the artist before, and itâs not a style I particularly enjoy, but itâs a fascinating piece. Itâs bordering on Surrealism, long before its inception, this was painted in 1486!
Notice the linea perspective, the laser beam looking thing and the 3D pickle and apple at the bottom, you canât really see it in this photo, it has to be seen in person, itâs bizarre.
Itâs in the Sainsbury wing, around room 51.
We got chatting with Alan about our youths as he grew up near us in Romford, so we had a good old reminisce about the pubs and clubs of our youths, awww, the good old days, before there was any chance of photos incriminating us on the internet đđ¤Šđ¤Ł.
The weather is so good right now, Iâm so glad because I have a dedicated my spare time to curating a beautiful wardrobe for it. :)
Dress from Gap x Doen, Shoes from Hermes, Bag from Dior
We had a really nice chilled out breakfast and a leisurely walk around the gallery.
âŚI canât stay away from Serbia apparently, we were walking along the road, when I saw this flag in the distance that rang a bell, as we walked past I saw that it was flying on the Serbian embassy in Belgrave Square.
And Iâm dressed in Serbian colours too. đ¤Š
Although we were there to celebrate my successful trip to Serbia with some congratulations shoe buying, I did try on, and buy some new clothes from Me & Em too.
It was Chris who saw this dress and suggested I try it on. Itâs heaven, it feels so good on, and because itâs zip fronted it means I donât have that gaping hole on my boobs, like I often find with button up shirts and dresses.
I knew what shoes I wanted when Chris said heâd like to buy me some, so we headed straight to Dior.
We had dinner in Harrods too, we made a really long day of it.
Then it was back home to my babies.
I love adventures, but I also love being at home - and not because I have to be, as I once thought would be the case, but because I want to be.
Behold my new âwell done on being brave enough to go to Serbia and speak publiclyâ shoes.
I had been lusting after these for a while, but hadnât got round to adding them to my collection.
Anything worth having is worth waiting for.
Have a great week. Enjoy the sunshine, slap on the sunscreen and keep hydrated. Xx đ
I found Belgrade to be incredibly pleasant and safe feeling.
I had a look on the UK government website and it has some notes about Serbia.
But to be honest, with the world as unstable as it is right now due to the actions of some maniacs in charge, nowhere is that safe anymore. So itâs personal choice to decide to go anywhere, home or away;
Attacks could be indiscriminate, including in places visited by foreigners. Terrorists may target religious sites, including churches. There may be increased security in place during festive periods and other major events that might attract large crowds. Remain vigilant and follow the advice of the local authorities.
Political situation
Mass gatherings and demonstrations are taking place in Belgrade and other towns and cities. These can happen at short notice and cause significant disruption, including to public transport. Most gatherings are peaceful but there is the potential for things to escalate quickly. To reduce your personal risk, including possible injury:
keep up to date with local developments
plan ahead to avoid disruption
avoid crowds and demonstrations
Crime
Protecting yourself and your belongings
Take sensible precautions to protect yourself from street crime, particularly in larger cities. Pickpockets work in tourist areas, airports, on public transport and at motorway service stations.
Criminals may assume that foreigners are carrying large amounts of cash. Four-wheel-drive and luxury vehicles are also common targets.
Some sporting events have had incidents of violence and petty crime. Incidents are common during derby matches in Belgrade â take extra care in and around stadiums when these are taking place.
Unexploded landmines and bombs
There is still some danger from unexploded landmines and bombs from the 1999 Kosovo conflict. Most of the affected areas are in the mountains to the north and east of Kosovo. Take special care in these areas and keep to marked roads.
Thick vegetation covers most of the dangerous areas. Do not touch anything suspicious and report it to the police.
I didnât have any cash on me as itâs a closed currency and you canât get any