I started writing this blog as a reminder to myself, and for those who don’t know what life with a colostomy looks like, that it’s absolutely not the end of the world to have an encounter with cancer, and to be given a chance of life ~ with a stoma.
It’s kind of a love letter to myself to remind me of the life I thought was lost. A gift to me that will last forever as a reminder that this isn’t what I expected life to look like.
It’s something that brings me great pleasure, to have reassured others facing a similar situation that life can be okay.
That from the ashes of my pre-diagnosis existence - lived in fear - incredibly symptomatic of cancer, with all that entails - the excruciating pain and the accidents, that you can come out the other side. And surprisingly life can be bigger, bolder, brighter and better than before.
What I discovered was that a stoma won’t stop you enjoying life, but a mindset can.
I really thought it was the end of my world, I honestly thought it was just going to be me and Chris living alone, alienated and isolated from friends and family, a life lived inside the house, not daring to step outside, because I couldn’t visualise what that world would be like or look like.
My pre op traumatised, panicked brain created this image of me as a monster - unlovable, unwanted. Broken beyond repair.
You may well not believe me now when I say that my entire being thought that even if I survived the cancer, and the treatment for it, that my life was over anyway. I felt hopeless.
…and I can’t explain fully how I have never ceased to feel the joy and elation that it turned out to be the beginning of a better life.
Part 2 has been lived incredibly well.
I think it’s pretty safe to say that no one grows up thinking “Oh one day I’ll finally be complete because I’ll shit into a bag on my abdomen!”
Also no one wants to find out the hard way how resilient and strong they are either. I know I would have been happy to just take a guess that I’d be moderately resilient if life threw me a curve ball.
But that wasn’t my destiny, mine was to experience it first hand.
I always maintain that I found my diagnosis easier to handle because of Sam’s diagnosis six months before mine.
Also, I think it seemed easier to comprehend because I was in excruciating agony, and the cancer diagnosis made more sense than the IBS and piles one I was given for so many years.
My NHS gp’s were guided by government guidelines. So my diagnosis was ridiculously delayed.
I have no animosity towards them, I’m sad they didn’t diagnose me sooner, but I know it wasn’t out of malice. Just a disregard of my symptoms due to my age, which is a common problem unfortunately.
Thankfully I lived to tell the tale.
My surgeon and oncologist were incredible people. My heart literally lifts when I think of them.
(Our son, Sam, was diagnosed with stage 3 Nasopharyngeal cancer in October 2009, having been misdiagnosed with multiple mild conditions in the preceding 6 months).
Nothing is going to be worse than nursing a sick child, well, there is one thing obviously worse. It is an unbearable pain.
No one should have the risk of losing their child, and most definitely no one should suffer the loss of a child.
One of the reasons I consider us as an exceptionally lucky family is because Sam recovered and lives a very happy life with his fiancé and son (A child Sam was told he’d never be able to conceive naturally, but little miracles happen all around us if we look for them).
Mostly I think my diagnosis was easier, because the worst had already happened to us, but that said, I was extremely traumatised by the treatment plan I was given.
My wonderful surgeon explained the impending procedure.
My oncologist, who was such a lovely person, who everyone who ever met him adored, tried to soften the blow of my treatment.
He said these words out of kindness of course, but for me they were nonsensical.
When he was explaining that I’d need chemotherapy and radiotherapy, and that I’d lose my fertility due to that treatment, he reassured me that my hair wouldn’t all fall out with this particular treatment.
I was 36 at the time, so to me the absolute and permanent loss of fertility was far more painful than the thought of temporary hair loss.
So when he was explaining the shit sandwich of cancer treatment I’d be going through I did have to say to him that although I understood he was trying to find positives where few could be found “my hair would have grown back, my womb and ovaries wouldn’t”
I found everything difficult pre surgery.
I managed, but it was hard. I felt like an injured animal. Wounded by life, lesser than I was, heading towards a lesser life.
It was never my expectation at 36 that I’d end up infertile, with a bag of poo stuck to my side, I mean, whose would??
So the surprise of coming round from the surgery, peeking at my newly formed stoma (you have a clear bag on to start with) and feeling flooded with relief, and peace was overwhelming.
I can remember it so clearly like it was yesterday. I felt absolutely at peace.
“Oh right! Is that it? I can do this!!”
…and I’ve never looked back. Ever!
I am weird I accept that, but I prefer this life to the one I had known for the 36 years prior.
It’s been 15 years since I was diagnosed with cancer. And I love that I get to live every day with the same peace and calm as that moment I saw my stoma for the first time.
And probably even weirder is that if I was offered some miraculous opportunity to go back to the old fashioned plumbing I’d say no thanks, I’m happy as I am. I’m better as I am. I like so many things about my stoma that I don’t yearn for a bum hole.
(I know, I know, that makes me very odd. I know so many people who don’t feel the same way as I do. And I absolutely understand why they feel that way. No one is right, no one is wrong.
I’m happy as me, and that’s all I can say).
The experience of the last 15 years has taught me a lot of life lessons;
1, People can surprise you (both good and bad. Some people you thought you would surely be able to rely on aren’t always available for you. And some people you hardly knew become so incredibly important to you, you can’t imagine life without them). It is an unexpected revelation.
The ones who walk away aren’t missed, but do try not to take it personally.
I guess I have no alternative but to respect their decisions, they must have had their reasons, whether I’d understand them or not, but nothing was lacking for us from their absence, so really, all’s well that ends well.
I saw a quote once that I feel is worth noting;
*From Google “If their presence in your life doesn't add any value, then their absence won't make a difference. The quote suggests that you should evaluate the impact of the people in your life. If someone's presence doesn't bring anything valuable to you (for example - joy), then their absence likely won't affect you either.“
2, Never save anything for best, now is the best, so use everything as if it’s a special occasion…because it literally is.
3, I tell people what they mean to me. I don’t leave my love for them unsaid…Just in case.
4, I try to be useful while I’m here. It’s why I love to do my charity stuff. I like the feeling of being useful, and I think it’s important to give back to try and put the universe in balance.
5, I may not be physically whole and complete but I am still worthy of love and it’s always worthwhile still being here.
This lady is happily incomplete. And completely at peace with it.
Far from shying away from life, I live it in glorious Technicolor!
I fly somewhere once or twice a month. I get to experience things I never thought possible. I most definitely didn’t get the chance to do that during the lost misdiagnosed years.
I’m really squeezing the pips out of it while I can.
The convenience that my stoma gives me is fabulous. Okay, I do fret about leaks (but they are mercifully rare for me) and unexpected farting is still my biggest concern. But it’s a small price for me personally for the up sides I feel about stoma owning.
Like I said, no one ever grew up dreaming of shitting in a bag, but it’s also not the worst thing that can happen either.
Lots of people have said to me “I’d rather die than live with a stoma” and to them I say “okay, go for it, you do you babes”.
But I’m living a really very nice life, so I’m going to take that as a win.
I love that I’m breaking all and any expectations I had pre surgery.
I thought I wouldn’t be able to dress up and feel good about myself.
…and I do, regularly.
Top from Intimissimi, Trousers from Tesco, Jumper from Ralph Lauren
I’ve become very accustomed to walking round like a pound shop pirate, with my little birdie on my shoulder. He seems to enjoy it, and I love it.
I’ve been very lucky lately to go down to pick my grandson up from school to help Sam and Milly out.
It’s a five hour train journey and I absolutely bloody love it!
I’m lucky that I get to do an awful lot of things that I never dreamed possible.
Top from Intimissimi, Trousers from Ralph Lauren, Shoes from Kate Spade, Bag from Dior, Coat from Max Mara
And being with Zak is the dreamiest of dreams.
I don’t always want to carry masses of stoma stuff around. So I have learned over the years to condense it down to the barest minimum.
Just the basics and nothing more.
My preference for a day out is always to have the car with me full of supplies, but as I don’t like driving in the dark, I’m taking the train to Hampshire to pick him up from school for now. So I take only what I might need.
It was the same for a night out we had too. I took a small bag, but stocked it with emergency rations.
Top from M&S, Trousers from Micheal Kors, Shoes from Chanel.
I really truly believed that a life of nights out with friends was lost forever, when in reality I get to do so much more than I did pre eventual correct diagnosis.
I’m so grateful every day that I get to live a full life.
There is nothing I can’t do. Well, there are a couple of things that spring to mind that I feel aren’t possible, but nothing that bothers me that I can’t. ;)
I can go out, I can stay in. I get to decide. I get to choose. My life is no longer dictated by how close to a toilet I am.
I think it’s also worth noting that I haven’t found anything I can’t eat since my stoma surgery. I am cautious about eating sweetcorn, and that’s about it in the last 15 years.
I love food, I love going out to dinner, I’m living life fully, and that’s not always the case for people even without bowel issues.
I’m not a fan of cooking but I prefer it to starving, but even I can turn out some pretty tasty stuff occasionally. ;)
I don’t think I miss out on anything because I can’t eat sweetcorn. And even that I could eat if I chewed properly…which I don’t, I’m more of an inhaler of food than a savourer. :)
I had a few errands to run in London, so I took myself into town and had a lovely time.
Spring sprung for a while, so the Brits made the most of it.
London in the sunshine is pretty hard to beat. I love travelling to far flung places. But my heart is in London, especially if it’s sunny.
I had some bits to drop off, and I had to go to Louis Vuitton to get some perfume they found for me. Long story short, I’ve been wearing a scent from LV for years, and for reasons unknown they have decided to discontinue it!
I’m gutted, but I went into to their flagship store a few weeks ago to enquire about the possibility of getting some, and they had some of the refill perfume left, in some dark nook of the basement I’ve no doubt. So I took myself into London to get a bottle I had refilled with it.
So basically I’m on my final journey with this smell. I need to find a replacement, because perfume has become very important to me. It gives me confidence that should a bag leak occur I have a little bit of time smelling nicely before I start to panic.
Top from Intimissimi, Trousers from Ralph Lauren, Shoes from M&S.
Obviously it was the ideal opportunity to try on some new shoes. And these little beauties should be coming home to me as soon as I sell enough on Vinted to pay for them. 😬
I had a fabulous time bobbing around town by myself. I love people, but I am equally happy in my own company.
Then Thursday last week I had the pleasure of getting the train back down to Hampshire to pick Zak up from school again. What an absolute joy.
He’s such a darling boy. So smart too, a real credit to his parents.
This time I took an overnight bag because I had my very first sleep over at his house.
Sam, Milly and Zak were heading to ours on Friday night anyway, so I thought I might as well stay and come back home with them.
Top from M&S, Jeans from Tesco, Shoes and Bag from Christian Dior
It was World Book Day on Thursday, so I had the pleasure of picking Mr Wonka up from school. :)
Back in Essex for the weekend we had a fun filled itinerary planned…I say we, in the broadest sense of the word.
I had been inspired to do some fun things, and I thought Zak would like to share it with me. And he really did. :)
Top from Ralph Lauren, Jeans and Shoes from M&S.
It was a very busy weekend, and it was fabulous.
I table scaped a beautiful Easter/spring table. It seemed like the perfect time.
The sunshine just makes everything feel nicer.
I set about making and creating things.
Sunshine and Zak make me want to fill the house with happiness.
I took inspiration from Meghan Sussex’s new show on Netflix.
It’s so beautifully shot, it’s like a living breathing version of her lifestyle blog, The Tig, if you followed her back in the day.
I love everything about her, she is the most stylish woman of modern times, and incredibly talented.
Her show isn’t about perfection, it’s about finding joy in life and living in it.
And I think we can all agree this world needs some joy right now. Make your own and hold on to it.
…watching it made me want to give some of her ideas a try.
Mission accomplished!
Zak and I worked together on the cake making and baking, and eco gift bags.
We didn’t have a party planned, they were made mostly for our own enjoyment.
We made one up for the little boy across the road and he absolutely loved it!
Party bags don’t need to be just for children (ours were for all the adults mostly), they don’t even need to be just for parties either, who doesn’t want to take home a gift bag after visiting friends or family, and they really don’t need to be full of plastic crap and sweets.
These bags could well be the way forward.
Party bags with purpose. Something tangible that will grow in to something more. 🫶🏼
Seeds, mini garden tools, potting compost, fibrous plant pot, plant markers, all in a paper bag.
One of our very happy recipients. :)
Then Sunday was our big family adventure to Colchester Zoo. We haven’t been as a big group in a few years. So Zak turning 6 seemed like the perfect occasion.
Top from Ralph Lauren, Trousers from Micheal Kors, Bag from Dior, Shoes from Gucci
Chris took this photo so he’s missing, and Erin had an unexpected work commitment, so she couldn’t come. But she and Ben came round on Saturday for a little bit. So at least we got to spend time all together for a while.
There is nothing more important to me than time with my boys, their girls, and Zak. Heaven, absolute heaven.
My mum had the rather brilliant idea of taking a new photo for posting on ‘World Cancer Day’ when it comes round next. The one I use is spliced together from two different photos. So it made sense while we were all there to take a new one.
All three of us are cancer survivors. If you ever wonder why I consider myself lucky, here it is in photo form.
We all lived to tell the tale. 🤍
And this is my baby boy who himself carries battle scars from the knock on effect of having a poorly mum and brother. I’m so happy he’s here. I’m so very proud of my boys and grateful for them.
Would be rude not to have a go! Hahahah
The great grandparents and Zak. We are so very lucky. I love moments like this.
We had the most amazing time, any time spent with Chris is my favourite time. But all of us together was incredible.
Chris and I are shattered now, so if you are an older parent or older grandparent I’m in awe of you!!
We went to bed as soon as it got dark hahaha.
All while this was all going on Chris and I booked our 30th wedding anniversary trip for next February too. We don’t like to be bored. 😂
I am so excited to be spending it in a country we adore. We are going to return to New Delhi and Jaipur, but added to that we are going to Udaipur too! I’m so so excited for it!
I can safely say that this is not the life I envisaged when I was told I needed a stoma to save my life. Not even close.
This life is so beautiful and bold it feels like a dream. And I am grateful for it every single day. 🫶🏼