Hi, if you’re new here hello, welcome, I’m Suzanne.
Quick re/introduction;
When I was 36, my at the time 13 year old son, Sam, was diagnosed with stage 3 Nasopharyngeal cancer - after being misdiagnosed for over 5 months with all sorts of weird and wonderful nonsensical things.
Travel sickness, growing pains, ear infections in ears without any signs of infection etc etc, in my heart I knew none of these things made sense. He wasn’t unwell as such, but he was feeling off, and couldn’t put his finger on what was wrong, but he was missing so much school due to general fatigue and vague symptoms, so I kept pushing.
My persistence paid off and we finally got the answers we needed, although not the one we had hoped for.
He was treated in UCLH in London, he had chemotherapy, radiotherapy and immunotherapy.
Six months later, and just one day after he’d had some very encouraging scan results I was diagnosed with stage 3 colorectal cancer.
Oh the fun!…No, seriously, it was hell. Nothing short of hell. Both of us were in treatment for cancer at the same time. In two different hospitals, and counties.
My youngest son, who was eleven at the time, and my husband had so much trauma to deal with.
Obviously Sam and I had our own as well, but there is something very different about being the one with cancer, and the one watching someone you love go through cancer treatment. I know because I’ve done both sides, and although my journey was physically gruelling, emotionally I found it easier to be in treatment than watching helplessly as my child went through treatment.
I would have done anything to take his pain away.
Don’t get me wrong, I’m not saying going through cancer treatment is easy. It’s not, it’s all incredibly hard, and utterly shit.
Just there are different degrees of shit-ness.
I admire my son Sam for how well he got through his treatment, he was an absolute legend. Head down, did what had to be done, and was stoically, cheerfully optimistic…well, as much as you can in the very dire circumstances.
He showed me how to get through my treatment, it’s not like I could sit and wallow after watching him just get on with it.
And I very much admire how well Chris (my husband) and Ben my youngest got through all of it.
They took some deep knocks along the way, some of that trauma still remains, but they get through it. Day after day they plough on through the tricky stuff.
That side of cancer is often overlooked, the loved ones watching us should be acknowledged and appreciated. None of it’s easy, all of it’s awful, no matter where you are.
I don’t really know how we all got through it, but I guess you just have to don’t you? What choice is there?
Huge pats on the back for all involved, and if you are going through a tough time right now, I’m sending love.
I too had been misdiagnosed, but for far longer than Sam was. I started having bowel issues at 18. I was told it was piles and IBS, with no investigation or checks, until I was 36 years old.
In the beginning, at 18, it was probably just the polyp forming and then growing, until it grew up to be a rather large tumour up my arse. Unchecked and untamed it grew out of control.
If you were wondering, yes, it was excruciatingly painful for many many years, but with no frame of reference for pain, I just assumed that was the pain everyone with piles and IBS was in.
I am incredibly lucky (yes, I sound it don’t I!?), but really I am very blessed though, because I had an old lady, slower growing cancer than is traditionally expected in a younger persons body.
So here I am 15 years later, living this huge wonderful life, not taking a second of it for granted. Not wasting a second and not wishing for things that don’t matter.
I am happy, content and completely at peace with myself. I look different to some people who don’t have stomas, but I’ve never thought of different being worse than, or a negative.
I am perfect in my own normal, my new normal and I am incredibly grateful for that.
I don’t have the best body in the world (neither pre, nor post op) but it is the only body I have, and it’s kept me alive to play in the world, that’s all I care about.
It takes time to adjust to a new normal in some cases, and that’s okay, it’s not a competition, there are no prizes for settling into it the best. I adjusted very quickly after my surgery, even though that wasn’t what I expected pre op.
Some people adjust immediately like me, a lot of people actually, take a lot longer to adjust and adapt to their new way. And I think we can all agree, that seems completely and utterly reasonable. It’s a big change, I’m the weird one in this situation.
I went into the operation crying my eyes out for the life I was leaving behind. Thinking it was the best version possible.
I came round after the surgery, looked down at my stoma, breathed a sigh of relief, felt with every fibre in my body that everything was going to be okay, and 6 months later I was laying on a beach in Cuba sipping mojitos, in a bikini, loving life more than I had in the preceding 5-7 years - where I’d suffered horrific bowel cancer symptoms.
I travel at any opportunity I get. I am addicted to it. I can’t bear the thought of missing something, because that was what my pre diagnosis life was like.
I hadn’t flown for 8 years prior, because I was just too fearful of bowel related accidents, I certainly didn’t want to add mid air accidents to the daily peril.
So once I had my stoma I realised I could go anywhere, I have!
Travel is possible, everything is possible with a stoma. I haven’t found anything I can’t do because of it as yet.
Give yourself time, and a break if you are feeling pressure to bounce back to the old you.
You’re a newer version, and sometimes it takes a while to adjust. Be kind to yourself, like you would to someone in the same situation. Xx
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I was sent the free NHS bowel cancer test kit the other day and I can assure you I leaped at the chance.
Firstly, very few things in life are free, so why not.
And secondly I now know of 4 more people who had no symptoms of bowel cancer - but it was picked up on the at home test kit. That’s wild!
Imagine if they’d left it and thrown the test away. God you’d kick yourself if the worst was to happen.
It’s a bit of a faff to do the test, even for me, which is funny as I have pre bagged poop. But as I have a bleeding granuloma under my stoma I couldn’t risk the blood from that contaminating my sample. So I had to sit with no bag on, and wait to collect a sample straight from the source, and on this particular occasion I had none to collect. But as I’d made the mistake of writing the date on the sample bottle so I had to persevere.
I’m always pooping, 24 hours of the day, so it seemed ironic that when I actually needed to, I wasn’t.
Anyway a bit of faff for a potentially earlier diagnosis!? Hell Yeah!! Yes please!
It’s easy to follow the instructions, it’s free, and it could save your life. Definitely worth doing.
I had the results back today and I’m absolutely fine! Which is bloody brilliant news!
It wasn’t even two weeks to get the results. Quick, relatively easy, and very reassuring.
On the subject of pooping, I had the most successful holiday output wise ever when I just went to Spain.
I can only put it down to the fact that I wasn’t as constipated as I usually get. And I put that down to trying to stay hydrated well, and adding in Jelly Drops.
Not a paid ad - I bought them myself to see if I could find a way to make travelling easier.
Constipation is a huge issue for me when I go anywhere abroad.
You’re looking at the woman who when travelling in India nearly had to seek medical attention for the most severe constipation she’d ever had.
I’m not sure when constipation becomes a blockage? I’m not sure what defines it, but my god I was unwell and panicking.
But this recent trip to Spain was a delight. Great output, I felt fabulous, and I’ve never been or felt better while away.
I like to eat high fibre foods (adults need to be eating at least 30 grams of fibre a day (unless medically advised not to)) and adding in plenty of water and these jellies really helped keep me in balance.
(They were designed for Alzheimer patients to keep them hydrated, but any one struggling with good hydration would benefit from them).
…Them, combined with delicious fruit and vegetables, chia seeds and dried dates and figs, and nuts and seeds has made my life so much better.
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So, what have I been wearing, and how did I get so comfortable in myself to go back out there and buy clothes after my APR surgery?
Second question first.
After my operation I was in a great deal of pain, and then discomfort for some time.
I wore only very loose baggy clothing.
I didn’t want anything touching my abdominal wounds or my bottom wound.
So it made dressing a bit tricky.
I had no real desire to look good in the beginning, I just needed clothes on because we are legally obliged to, but my focus was solely for comfort.
Then as time went on I felt bolder and brighter and wanted to shine that bit more.
I also realised that society being like it is meant that if I did happen to spring a bag leak, the least likely suspect would be the lady all dolled up to be nines.
So my clothes have become a protective armour of sorts. Dressing well helps me mentally feel like I’d escape suspicion should my bag be leaking smell.
Who is more likely to be smelly? The lady dolled up - dressed to kill - or someone is sloughy casual clothes, looking like shite.
Sorry to manipulate the population, but we all know who we’re more likely to suspect smells, and I use that to my advantage.
I love dressing well, admittedly I always have, but it also serves a purpose, it’s my safety net, a comfort blanket.
Anyway, as it turns out leaks are rare for me thankfully. I’ve had very very few. But I always feel somewhat relieved that I look like the least likely source of the smell.
Stomas in general do not smell.
People with stomas do not smell in general.
The only time they do is at bag change time (fair enough) and if a leak has happened.
But well functioning stoma bags actually smell less than people without stomas, we aren’t walking around farting unfiltered like the non bagged community.
Ignorance assumes that a stoma user will smell, when it’s actually the complete opposite.
If you were in a queue at the post office, for example, you’d be less likely to suspect me, over someone else, and I’m sorry to throw anyone else under the bus, but in that situation it’s every woman for herself! 😂
Top and trousers from Mango, Shoes from Hermes
It’s a simple thing, but dressing nicely makes me feel more confident. I feel protected, and it lifts my spirits.
The right outfit can make you feel better. And sometimes you do actually have to start from the outside in, no matter what spiritual gurus would have you think.
How to go about buying what feels and looks right? Well, be prepared to be patient with yourself.
A new body needs some time to learn what works and more importantly, what doesn’t.
For example, I’ve always had an awkward body to dress anyway, even before I had cancer collateral damage to deal with - big boobs, small waist, big bum and thighs. I’m plump and petite if it’s even possible to be both things at once.
So I haven’t ever been able to go in and buy everything in a set size.
I hadn’t really noticed until my friend Michelle told me her husband buys clothes for her when she’s not around to try them on. Size 10 (uk) tops, size 10 (uk) bottoms, always fit like a dream on her.
That’s not my experience of shopping, I can be incredibly exasperating to dress, a myriad of sizes in both tops and bottoms. I have to try before I buy because nothing is standard sizing for me.
So that was before I added in a colostomy and two hernias. I suppose I’m no worse off because I had to try everything on pre stoma too, it’s just an added element to factor in.
The best way to find out what works on you is to go in to a large clothing shop, with enough variety of clothing, styles, fabrics etc and try it all on.
Doesn’t matter if it’s Primark or Prada, the label is irrelevant if you find the right outfit. You will find beautiful clothes that make you look a million dollars, if you take your time and enjoy the journey.
Start with nice undies, rebuild yourself, outside in, try everything, see what makes you stand tall and feel fabulous.
I’m often surprised by what works. I’ve been wearing a lot more trousers lately. Which is surprising to me as I used to avoid them for fear of leaks.
But I found some great trousers in H&M and RL which are really comfortable and very smart and I like how I look in them.
(Since I had that skin cancer cut out of my leg last year I decided it was best to cover my skin as much as possible, to protect it from further sun damage).
It’s important to factor in poo room too. I tend to prefer to try clothes on with a full/ish bag on. That way there won’t be any problems when it comes to wearing the outfit in the wild.
There’s really no point in me trying something on in a dressing room with an empty bag, only to find it causes my bag to leak when I’m wearing it for real.
Top from Burberry, Trousers from H&M, Belt from Hermes, Shoes from Jimmy Choo
Dress from Scamp and Dude, Shoes from Gina
Top from Micheal Kors, Trousers from Ralph Lauren, Shoes from Chanel, Bag from Goyard.
Top from Ralph Lauren, Trousers from M&S, Shoes from Hermes
Top from Gant, Trousers from M&S
Top from TK Maxx, Jeans from M&S, Shoes from Hermes
Dress from Oliver Bonas, Shoes from Christian Dior
Dress from Me & Em, Shoes from Hermes
Milly, Sam and Zak came up to stay before they headed of on their holiday to Spain.
Milly had some uni work to get on with, and Sam went into his office to work. So Zak and I went for a shopping day.
I have taken him for walks in the countryside before, but for some reason it always seems to end with him getting injured in some way, and I think both of us have decided to give it a miss. I will leave outdoorsy adventures to those more capable than me.
Shopping is more my expertise, and thankfully he loved it.
I do feel that perhaps we shouldn’t be left unattended though…
But how cute are these shoes! 🦈 🤩😂🥰
We shopped, we had lunch, we came home and played with the budgies.
We were on the way home and he said “Nana, I’ve had the best day ever!”
I appreciate that children live in the moment so every day is the best day ever, but it still melts my heart to hear it. Because I had the best day too. We laughed so much in the Crocs shop looking at all the ridiculous charms you can add to them…and no, I wasn’t tempted into a pair myself. 😂
We came home, and built the best camp, well, Milly, and I did while Zak oversaw the build like a building site foreman. :)
Then Saturday was a really big day for the Doré family.
We all headed to London to go to mine, and Chris’s favourite restaurant in England.
And Zak has now become old enough to go!
Chutney Mary have a strict dress code, allergy policies and a very strict age restriction, it’s over 10 years old in the evening, but luckily it’s over 6 years on Saturday’s now. So we can finally share it with all of us in attendance.
It was a celebration of Ben and Erin’s engagement, a belated celebration of Sam and Milly’s engagement from 2020, and Zak becoming old enough to go there.
I wore this dress, seemed silly just leaving it in the wardrobe unused.
Chris bought it for me a few weeks back, he saw it, suggested I try it on, which I did, gladly, and we both loved it.
It’s really very comfortable, and it has a zip instead of buttons, which works well with a fuller bust so there’s no gaping buttons.
Dress from Me & Em, Shoes from Holland Cooper
Bag from Dior.
It was so lovely to have us all together in our favourite place.
My boys chose the best girls 💖
Zak loved the restaurant, the staff were really sweet with him and made him feel special, and impressively he didn’t sit there glued to a screen, he was happy chatting and colouring.
Huge congratulations to both boys on finding the most perfect wives to be.
🤍🤍
This probably calls for a new dress right?
🤩😂🥰
We had a lovely walk round London after lunch and then home for an early night for the others as they had to get up at 3 for the early flight up Spain, rather them than me 😬
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Chris and I went for a pub Sunday roast then on to the polo at Silver Leys in Bishop Stortford.
I needed room in my clothes for the amount of output I get after a roast dinner, but still smart.
Top from Kate Spade, Trousers from M&S, Shoes from Hermes
Some days need super cosy casual loose fitting clothes, and that’s okay too.
The important part is wearing what makes you happy.
Life’s too short for feeling uncomfortable.
Top from TK Maxx, Trousers from Tesco
I’m trying to increase my muscle mass, not massively, the last thing I need is bulky arms, finding clothes is hard enough as it is. 😬😂
No, I want to tone up and increase muscle mass some, seeing as it’s clinically proven that muscle mass is an indicator of longevity.
And I’m having such a lovely time living I want to do a lot more of it.
So every day I have to do some form of exercise, plus lift some light weights, we’re talking baby steps here. I am incredibly feeble 🫣😬😂
I go for a walk or a cycle daily, nothing crazy, just more than I used to. That way I can build it up slowly.
If I rush it and go all in I won’t stick to it, I never do. I just need to make small doable changes.
I have cured myself of the hot chocolate addiction. It was incredibly problematic.
I get fixated on things and hot chocolate became one of them. I had to have at least one a day. Had to! Couldn’t focus or function without.
This has been going on about 3 years.
I knew there was 35g of sugar in a medium skinny hot chocolate from Costa, but that didn’t really mean very much to my dyscalculia brain.
It was only when I googled how many spoons of sugar that was that I realised my addiction had to stop.
Seven!! 7!!! Seven spoonfuls of sugar, as if I’d ever add that willingly to anything, let alone 1 drink!
I decided I wanted to stop, it hasn’t been easy because it was such a big part of my day, but I have, it’s been 6 days so far, six days and going strong. Long may it last.
I have swapped to home made turmeric lattes, which are an absolute delight, if you like turmeric.
1 cup of Full fat jersey cow milk
1 teaspoon ground turmeric
1/2 teaspoon of ground ginger
1/2 teaspoon of cinnamon
1/4 teaspoon of ground cardamom
1 pinch of black pepper
1/4 tablespoon of maple syrup (optional of course, but there are lots of nutrients in proper good quality maple syrup).
Add it all to the milk steamer/heater
Ignore all of that if you don’t like turmeric, because it’s super turmeric-ky💛
Anyway, thank you for stopping by, much appreciated.
Have a fabulous week ahead. Xx 😘