Hi! Hello! We’re back, not for long, but I’m enjoying this brief interlude.
I’ve had a few new readers contact me recently, which has been so lovely. It really helps me stay focused on what I’m trying to achieve with my blog, and living so publicly, and so openly on social media.
The main purpose of this blog was to show people who have a stoma what they could wear if they chose to. But really it morphed into something more than that.
Me showing myself going about my business normalises what I personally didn’t think was ever going to be normal ever again (before I had the surgery I honestly thought my life in the outside world was over).
My ultimate hope is, that I can give hope, and ideas to others, something I didn’t have when I was diagnosed. I feel like I’m doing good in the world by sharing and showing the world that having a stoma is not the worst case scenario, it is just a different way.
Which feels very therapeutic for me. Because I remember how traumatic and daunting life pre op was, if I can salve just a tiny fraction of someone’s fear, then I have achieved something.
I never pictured myself living as good a life as before diagnosis, I always felt it was going to be diminished, a lesser version of life. But nothing could be further from the lived experience I’ve had.
Life is extraordinary, the odds are often stacked against us, and still we rise. Xx
I might sound a little weird here, but I prefer my bagged life to “the possibly shit myself life” I had before I was diagnosed with cancer, but incredibly symptomatic.
So let’s just do a brief recap of life so far for the newbies. Apologies to my regular readers;
I’m Suzanne, I’m now 50. I’m a wife of 28 years, a mother of two beautiful boys, mother in law to two beautiful girls, and a grandmother of one glorious Zak. :)
Pre diagnosis, Life was bobbing along nicely, apart from the bowel symptoms I was having for about 5-7 years very badly prior to diagnosis. (But actually I had been suffering from bowel issues since I was 18).
I had been told by many and various GPs I’d consulted over the years that I had IBS and piles. And none of them bothered to look any further. And I didn’t think to insist upon it because I took what they said as fact.
Our life was nice, we enjoyed it very much. We are a family who has great enthusiasm for it. We enjoyed the mundane and the magical all the same.
In the summer of 2009, our eldest son, Sam, started having some odd symptoms. He’d have these massive nose bleeds, and dizziness, and spontaneous vomiting episodes, they’d come out of the blue, he’d be fine one minute then erupt. I’d taken him backwards and forwards to the GP over the coming months, and they said all sorts of things, like it’s his hormones or travel sickness, etc.
When he started having vertigo, and would have to make a nest on the floor for fear of falling over I took him back to the GP and insisted something was done.
He’d had grommets put in as a small child, so I suggested it again, and it was agreed we’d go down that route.
It was after that little procedure that the shit hit the fan in a big way. A massive swelling appeared on his neck. I took him back to the ENT surgeon, who for reasons unknown decided to excise the lump and have it tested.
(I now know that he should never have done that, and the lump could almost 100% only be cancer. And removing it put Sam in so much risk of harm).
Anyway, it turned out that it was indeed cancer. But what was most shocking is that it was a secondary. And the primary cancer was in his nasopharynx.
Sam was diagnosed with stage 3 Nasopharyngeal cancer in mid October 2009, aged just 13.
It was hell. He suffered so much. The treatment did a lot of damage to him, both at the time and lasting effects to this day. But we are very lucky because he survived.
Whilst he was in treatment in hospital in London, 50 miles from our home, Chris and I would take it in turns to be with him, and be with Ben our youngest son, back at home.
It was horrendous. I always felt I was in the wrong place. When I was with Sam I felt guilty about abandoning Ben, and vice versa.
Sam had his battle to deal with. Ben felt isolated and alone (which in turn had a knock on effect on his life and mental health, he was only 11 at the time).
So imagine our delight when Sam was doing so well he was able to receive the rest of his treatment at home. It was incredible. The months of separation were over. But my pesky bowels, which had been off the chart horrendous throughout this period, just didn’t seem to be getting any better, I was bleeding heavily and was in agony.
So 3 days after Sam had some great PET scan results I booked in to see about getting those pesky piles, or should I say “piles” treated. Just before Sam started his home based immunotherapy. Rather than the hospital based chemotherapy and radiotherapy.
We all went to the hospital for the appointment, as we were heading out to dinner after, so imagine our horror when the surgeon said to me “it’d be very rare for someone your age (36) to have cancer, but I’d better take a quick look through a sigmoidoscopy”.
I jokingly said, “don’t say rare, our family is a nightmare for rare!”
(Sam was the only child in treatment for Nasopharyngeal Cancer in the UK when he was diagnosed. There had been children before him, and I no doubt after him. But his cancer was so ridiculously rare in the west it’s almost unheard of).
Anyway, I think you can guess what came next. The surgeon found a tumour. A quite sizeable one at that.
(The shit hit the fan once again, if you’ll pardon a poo pun). And we had to go to the waiting room and explain to the boys what had happened.
I was then fully diagnosed with stage 3 colorectal cancer.
I consider it to be a miracle I’m still here. The time the cancer was left unchecked to grow was shamefully long. If I had had the cancer that is the usual type for that age bracket I’d be dead. God only knows how, but I had a slower growing, less aggressive type.
It had spread a little to local lymph nodes. But other than that it was contained.
So when people say to me how surprisingly positive I am about my stoma, I have to explain, that I probably shouldn’t still be here. I am literally on a second chance at life. So hell yeah I love my life!! Stoma and all!
Is it ideal? Probably not. But is it a negative? Abso-fucking-lutely not!!!
Anyway, enough of all that. My blog is for the purpose of sharing outfit ideas and life experiences.
Lived by someone who has a colostomy.
And after all that, let’s deal with the here and now.
What have we been up to? Well, a greatly reduced amount because of Chris’s broken shoulder. He did a spectacular job on it. It’s broken in 3 places, not just the one the X ray in Bulgaria showed up.
I’ve said it before, I’ll say it again, skiing is bonkers. Absolutely bonkers!
I have become a chauffeur. And that’s less than ideal as I hate driving. I prefer to be driven, I am a passenger princess of life (it’s talk like that that winds up the haters isn’t it hahaha).
Anyway, I think I’m doing quite well with it all. Surprisingly so. Not hit anything so far. Fingers crossed.
Chris isn’t in a terribly strong position to critique my driving, but he’s been very complimentary, so I think I’m doing ok.
It’s mostly to his work and back. But also, I’ve done a few trips, and one absolutely massive drive!!
Having gone down with a chest infection on the ski holiday I haven’t really ventured out that much.
I did get myself all dolled up…to take Chris to the fracture clinic. Why on earth would I do that? Well, I literally lived in pjs and joggers since I got back from Skiing. And I really needed to perk myself up a bit.
And getting some pretty clothes on helps trick the inside that all is well.
Top from Ralph Lauren, Jeans from Tesco, bag and shoes from Chanel.
It works to a degree. But if nothing else it stopped me from having to see my snotty face moping around. :)
Make up on, clothes on, ready for the world.
Having done all my school runs, Chris to the fracture clinic, Chris to work, then drop Ben to collect his car from it’s service, back to pick Chris up from work…like I said, I’m driving more now than when I had dependent kids at home. Hahaha
Anyway, we had a really special trip planned. It’s been planned for months and months. It was going to be super special. But it was a fair distance away from us, geographically.
When we booked it, Chris was in one piece, and he would drive there. But now it was down to me to get us there. I honestly can’t think of anything worse. Hahah.
I said to Chris over the weekend before that it might be a good idea for me to get a few miles practice in before the big day. So I drove us to the beach for fish and chips.
Beach ready.
Coat from Boss, Jeans from Tesco. Shoes from Gucci
I love every day. I love the ordinary and I love the extraordinary. I love the fact that I get one more day, each day. I live in a heightened state of health anxiety, but running beside that I live in a heightened state of gratitude and joy.
A walk, followed by fish and chips in the car at the beach is a simple pleasure.
I drove us there, I drove us home without incident. So although I was still feeling daunted, I felt a tiny bit more positive about driving to Oxfordshire…how far from home is it you may well ask, seeing as I’m making such a fuss about it…two and a half hours!! I appreciate that for most people that’s nothing. But I generally just drive to the big Tesco in the town I live in and back again.
But this trip was super special. Firstly it was to celebrate 28 years of marriage, which is lovely. I still find him hot AF, which is handy. And secondly it was to celebrate going somewhere I’ve wanted to go for years!
I have been desperate to go to Soho Farmhouse for years and years and years. But due to it being a private members club, that wasn’t going to be possible. Chris and I are not creatives, and therefore we did not fall into the criteria for joining.
But Chris, ever my Prince Charming, found a way, and joined Soho House membership, which meant we could book to stay at Soho Farmhouse.
To say I was excited was an understatement.
Top and trousers from Ralph Lauren, Boots from Dior, Bag from Goyard.
What to wear to Soho Farmhouse;
Well, it’s a farm, so you don’t need to dress up fancy. Casual is key, but nice casual is my preference.
Look at that brave little bunny driving to the countryside. ;)
It did make me laugh on the way there. I felt more confident to drive it in my car. A very low to the ground, lacking in suspension sports car.
Chris would have preferred we take his car, a super luxurious, comfy four by four tank of a car. But I could barely cope with the thought of driving mine, so I definitely couldn’t take on his car into the mix.
Which left Chris in the passenger seat of a very compact car. The only way he could get comfortable was to sit almost sideways, facing away from me. We must have looked a very odd couple to other road users, we looked like we’d had an almighty row! Hahahah
The thing about Soho House in general is, you can’t talk about Soho House, it’s like Fight Club.
You can’t take photos there, unless it’s away from others or in your accommodation.
But needless to say it was everything I thought it would be and more.
I was so nervous to go there. But actually we felt so welcome and at home almost immediately. The staff are super friendly. Possibly the nicest hospitality I’ve ever had.
It’s 100 acres of farmland. With 5 restaurants and plenty of things to do to keep you entertained…
…if you haven’t broken your shoulder…
Next time we go will be epic, because Chris will be back up and running. This time was amazing anyway. But we just couldn’t do the things together that I’d hoped for when we booked.
Obviously the bicycles are a big thing at the farm. There’s that famous photo of Meghan Markle and Milly Macintosh astride their bikes there.
I managed to have a ride round. But Chris had to walk around, which wasn’t the dream. But that’s life isn’t it.
Roll with the punches. Make lemonade etc etc…
Off to the pool we went.
I suggested to Chris that swimming might take the pressure off his arm. As it turns out that isn’t the case, and the pressure of the water made it far worse. So you live and learn.
The room we chose was the cheapest one available, and if I went again I’d choose it all over again. No need to upgrade, It was small but perfectly formed. It had so much provided for free I was blown away. The attention to detail was incredible.
I was absolutely blown away. I loved our time there, and I honestly can’t wait to go back again.
You don’t have to get dressed up for dinner. So I just wore trousers and a jumper. And I was happy with that.
I have been wearing a lot of trousers lately, it isn’t wise. But I have been unzipping them whilst in private, giving myself a bit of extra poo room, which is working out well.
I woke up on our wedding anniversary, having slept so well ~ the bed and bedding were exceptional, to find Chris hadn’t remembered to buy a Valentine’s Day card or wedding anniversary card, we were married on Valentine’s Day 1996.
He’s had a bit on his mind of late.
I like a nice card, but he more than made up for it when a tap on the door came and the most glorious bouquet of flowers were delivered. That was a huge surprise.
The flowers more than made up for the lack of cards.
Flowers, followed by breakfast in bed. I’d say that was the perfect start to the day.
I have found that breakfast in bed in hotels is top tier with having a stoma.
I hate getting washed and dressed to go to breakfast, and then I want to change my bag again after - because eating means I’m pooping.
Breakfast in bed means I get to eat, then shower, then bag change, like I do at home.
Then it was back out on the bikes (or bike in this case). I had my Soho Farmhouse dream and I’m so grateful to Chris for making it happen.
The journey there and back was very easy. And next time I’d be happy to drive it in Chris’s car, although preferably with Chris driving. ;)
It was the most amazing mini break. I feel very lucky and spoilt.
Then it was back home, back to reality, and back to the fracture clinic.
Who knew breaking a bone was so time consuming?
Top and Jeans from M&S. Bag from Dior, Shoes from Gucci.
I thought I might as well get dolled up again. That said, I couldn’t be bothered to wash my hair, and it was all sticking up all over the place, so I wore a headband.
Rule of thumb, if I am head banding, it’s most likely because I couldn’t be arsed to wash my hair. :)
The week fell away in a blur of chauffeuring and house work, then it was back to the weekend, a quiet one at home. A rare treat.
Chris needed to work to catch up on all the lost time at the fracture clinic appointments, so I decided to make myself useful and do some gardening. Yeah, I still don’t like it as it turns out.
He did treat me to a new leaf blower so that was exciting…I appreciate that’s very sad. But there’re soooo many leaves out there. It was overwhelming me, not anymore though. :)
Then Sunday I suggested we get out of the house and go for fish and chips at the seaside.
I know, I’m actually volunteering to drive now! What is the world coming to?!
I always say we go for fish and chips. But technically it’s not correct. I have fish, no batter, and two pots of mushy peas. But that’s a bit of a mouthful, figuratively and literally. :)
People watching, tide watching, eating lunch in the car, does life get any better?
I am very very lucky. And I feel very grateful that I actually feel that luck every single day.
We have a very big adventure on the horizon. We just need Chris to get the A-OK from the doctor at this week’s fracture clinic and we’re off…
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Keep well, stay safe. Much love xx