A pre blog glossary; let’s get aquatinted;
Stoma,
Ostomy,
Colostomy (from colon - the large intestine/bowel)
Ileostomy (from ileum - small intestine/bowel)
Urostomy (from bladder)
- are all words for openings from the bowel or bladder, through the abdomen wall, with the waste collected in a bag.
Saturday was World Ostomy Day. A day to not only celebrate a new lease of life that a stoma can bring but to raise awareness.
Wouldn’t it be a wonderful world if people REALLY did celebrate having a stoma of any kind. Be it a colostomy, like mine or an ileostomy or urostomy.
Life would be so much easier for a lot of people if the burden of shame and stigma was removed.
Think about any other medical procedure, brain surgery or heart surgery, and how revered they are and thought of as miraculous.
Well I can assure you bowel surgery is just as miraculous but because it involves poo somewhere along the line it’s been shunted right to the back of the queue for praise and wonderment.
Bowel surgery is incredibly dangerous, exceptionally hard to recover from and on top of that we’re supposed to feel a bit embarrassed because someone’s been touching the tube our poo travels along. Or worse still! Our bottoms!! Cue giggling and hilarity.
Well I celebrate my stoma everyday. I had stage 3 cancer for a very long time, so I know I’m very lucky for a lot of different reasons.
Firstly I got lucky that I had a slow growing, not terribly aggressive cancer. My age at diagnosis means I was very lucky in that respect. The younger you are the more aggressive cancer tends to be. So there’s my first lucky break.
Then came surgery. I was given a permanent colostomy. Colostomies tend to be a bit easier to manage than their small intestine counterparts (ileostomy).
That said, pre op I was told I’d poo once a day and not have to worry about it for the rest of the day, the only problem is, no one told my bowels that, so mine is working 24/7. But even that beats the alternative, not pooing can kill you. So I’m happy with my lot.
A colostomy isn’t held up as the great invention/innovation that it is. It is quite remarkable, quite incredible that you can divert waste out of the body into a bag and the person goes on to live this new (and improved for many) life.
It’s so underrated. And we know why, it’s all because it revolves around poo. That’s it.
Think about how clever it actually is, it’s mind blowingly clever, and yet it doesn’t get the credit it deserves.
The only reason I’m still alive after stage 3 colorectal cancer is because I was lucky enough to have a colostomy as part of my treatment and cure. How incredible! How truly amazing!
There’s not a day where I don’t thank my lucky stars and the universe for still being here, day after day, 10 years on.
I really wish we lived in a world where stomas were viewed as the miracle of modern medicine that they are.
Instead they are hushed up, shunned and ridiculed. They are often the butt of a joke, if you’ll pardon the pun.
They are feared, they are seen as the last resort and the worst case scenario.
To that end, when I first found out I had to have the operation to save me, I was a mess, I was distraught, disgusted and traumatised. If only I had known then what I know now! If only!
Before my operation I was advised by someone that telling people was a mistake and that I should keep it private, keep it a big secret.
Can you imagine someone suggesting I should keep it a secret if I was facing open heart surgery, liver, lung or kidney surgery? Shhhhhhhh, don’t tell anyone!
Can you imagine it? No, because all the ‘non dirty’ organs are fantastically well approved of!
Anyway, thankfully I’m not secretive or in anyway embarrassed, nor ashamed of my colostomy. And thank goodness for that. Can you imagine if I’d kept quiet?
I’ve lost count of the amount of wonderful people that have taken the time to write to me to say because of you I knew I could live a good life too.
I can’t begin to explain the joy that brings me. Because I know I wish I’d heard from someone like me, happy to share their joy of stoma-ing, before I’d had my AP resection.
I live a very good life, a joyful life, not in spite or despite of my colostomy but solely because of it!
I live a fantastic life to be honest. I do what I like, when I like. I’m very blessed.
I get to travel the world, which still stuns me in all honesty. Prior to 10 years ago I did not foresee travel on my horizon.
Pre cancer I was terrified to fly, after cancer I’ve not stopped (until 2020 came along and put a stop to easy, happy go lucky travels of course).
I know I will start flying off again one day, just not right now.
I definitely intend to go back to India. Firstly I fell in love with the country, it is as magical as it is majestic. (I can’t recommend a trip to India enough once all the pandemic-y stuff has burnt out). And secondly I made dear friends there who I miss very much, but thankfully get to speak to regularly.
I very much hope to go back to America because I really want to go back to stay at the Beverly Wilshire again, waking up in such a beautiful place, plus, I had the best pancakes of my life there. I also want to go to Malibu next time too.
I will of course be going back to our home in Spain, I miss it very much.
How can I plan all these trips in my dreams? Well because of my stoma!!
Have bag ~ will travel.
Before my bag I lived an incredibly small life. Too scared to venture too far from ‘safe’ toilets I trusted. I was symptomatic of cancer for a very long time and was misdiagnosed many times.
I no longer have those limitations. It turns out cancer cured my fear of flying! Ironically it also caused it too!
I wasn’t scared of flying it transpires, I was scared of shitting myself in public, due to having an undiagnosed tumour up my bum.
Take away the tumour, add in the fear that I might have lost my life, add in also that my son had cancer and that I was scared I might lose him too and it cured me of my flying phobia! Nothing has ever seemed insurmountable again.
I wouldn’t recommend or advise it as a cure of flying phobia, but I’m grateful to life for showing me the way forward. To live a good life and to make the most of every second on the planet!
My one hope is that someone reads my blog pre op and knows that post op life has the potential to be amazing.
Bowel surgery can be a bit tricky, so don’t try and run before you can walk…literally. I was so determined to be well and ‘normal’ again that I kept rushing my recovery. Causing myself more harm than good.
Recovery is hard work and slow paced, but it does happen. And once it does nothing can stop you!
I’ve had people say they think I’m inspirational, I find it doesn’t sit well with me, mainly because I’m really not. I’m not one of life’s ambitious types.
I’m a plodder. I have no goals (I achieved everything I ever set out to do by the age of 23).
From the age of five all I wanted was to be a children’s Nanny, a wife, a mother and a barmaid. Well I did it all - apart from barmaid bit but as I’ve propped up enough bars in my time I’ve satisfied that yearning! Hahahahaha.
I can’t see that I’m anything special. In fact I’d say that is probably my greatest asset. You’re watching me simply living a happy, normal, plodding along life. But it’s my sense of peace and contentment, that shines out of me.
There are many inspirational people out there but I ain’t one of them.
Some people once they’ve had to deal with something difficult, find it spurs them on to achieve great things.
I know loads of ostomates that run marathons and Iron Man triathlons! How incredible is that!
I know of at least 3 people living with metastatic, stage 4 cancer bowel that ran the London marathon on Sunday! Stage 4 cancer and out running 26.2 miles in the pouring rain! Mind blowing! That is inspirational!
I’m not going to be signing up for any great sporting event. It’s just not me, I’m very happy plodding along on my bike 5 days a week (albeit very slowly, as I was informed last week - thanks for that Josh! Hahahahaha).
What I want to do is just show people that every day life is as normal as it was before cancer came along. And from my personal perspective even better. I really do prefer my plumbing to the more traditional way.
I thought I was never going to have a moment’s peace after surgery. I thought my colostomy was going to consume my life and trap me within the four walls of my home.
I thought I wouldn’t go out and see friends or be happy ever again.
That could not be further from the truth.
(I appreciate that some people struggle emotionally and physically after stoma surgery. I’m not insensitive to that. There’s nothing I can do or say that would help either. But if you are struggling, I wish you well and I wish you peace).
And that is why I shout it from the roof tops that I have a colostomy and having it is ok, more than ok! And that is why I’m happy to celebrate World Ostomy Day!
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Well I’d love to say I’ve been out and about doing lots of exciting things. But it’s cold and it’s wet and I’ve mostly been in my track suit trying to keep warm.
I think I got dressed in real clothes twice last week.
And I think that was out of sheer and utter boredom of being stuck indoors.
I got myself all dolled up to go get some dishwasher tablets! Hahahahaha blimey! Living the high life aren’t I!
Dress from M&S, Tights from Tesco, Boots from Michael Kors
But Friday Chris said he had a meeting in Chelmsford, the town next to ours, actually it’s a city now but a very small one. Anyway he suggested that as he was going to a meeting, why not come along and be dropped off into town for some retail therapy.
It was torrential rain but I’d been in for 5 days solid so I said yes please!
It was only when I got there that I realised that I hadn’t been into Chelmsford (10 miles from my home) ALL year! I couldn’t believe it but it’s definitely true.
Realising this, it occurred to me that I am unlikely to return there before the end of the year too!
So I shopped! I shopped like never before.
I bought my Christmas cards and crackers (is it only the UK that has Christmas crackers?). I bought Chris’s birthday present (for December) and I bought clothes for little old me!
Frustratingly most of the dressing rooms in shops are closed. But genius that I am remembered Phase Eight’s dressing room is open. I used their dressing room when I went to Bicester Village.
So I knew it would be open. I tried on the clothes from there, but I also tried on the clothes I bought in other shops. Good job too as a few didn’t fit well, so I was able to take them straight back to get a different size.
I really made the most of my whirlwind shopping experience. I didn’t have a clue how long Chris’s meeting would be so I got stuck in, even managed to get some photos of Zak printed off. Oh I had a wonderful time. :)
It didn’t stop pouring down with rain the entire time I was there but I had a lovely time, even if I did resemble a little drowned rat by the end.
The weekend came and Chris, my man of many talents went over to Ben’s flat to tile the kitchen. I am neither a tiler nor any practical help to anyone, so I stayed home. It was again pouring down so I amused myself with indoor activities…like decorating the house for Halloween!
Halloween isn’t as huge here as it is in America but we join in. I’ve always decorated for it. I love autumn and I love Halloween.
I had a wonderful time. Chris came home from a hard day’s tiling, he admired my handiwork and then said “how have you attached the bats to the brickwork?”
”Nails, babe, big ole nails!” Hahahahaha I have great ideas but subtle and cautious are not in my playbook! Hahahahaha
It looks great! Even if there’s a possibility there’ll be huge holes to fill in after.
I attached my bats to the paintwork on the walls in the dining room last year, when I took them off the wall the plaster work came off too! But I just hung a painting over that so no harm done! Hahahahaha
I grew Zak his very own pumpkin patch this year. I’m really pleased how it turned out.
I’m not green fingered and I bloody hate gardening. It did however keep me somewhat sane during lockdown so I am grateful to my garden for that at least. And for the bountiful supply of pumpkins. :)
Sunday Chris booked us into The castle pub in Great Leighs for breakfast again. It was as always, fantastic, never had a bad breakfast there. Afterwards Chris went off to finish his tiling job and I went out to buy a Christmas tree, yes, it is a bit early but I’m having a fake one this year. I usually have real but I’m in the process of carpeting the living room with pale cream carpet and I don’t fancy wrecking it with pine needles and water.
Seeing as we no longer have a dog I thought we might as well treat ourselves to impossibly, irresponsible pale cream carpet. As if the only reason not to have it was the dog…and not our sheer and utter clumsiness! Hahahahaha oh well, live dangerously I say.
We’ve trialed a cream rug since February and we’ve been fine with that so I have every confidence we’ll be ok with carpeting the entire room. ;)
Dress from Tesco, Boots from Russell & Bromley
I know I’m biased and that I think Chris the most amazing man to have ever walked the planet. But there is no end to this mans talents.
Ben’s kitchen has turned out lovely.
Once Chris finished his work for Ben and Kaitlyn they very kindly had us round for a curry. Which although delicious I very much appreciated my bike ride to burn it off.
We left them to tidy up and headed off home. We finished our evening off snuggled up on the sofa. With Chris trying to get some much needed rest before going back to his real job. ;)
I can’t think of many better ways to end a weekend than under a duvet on the sofa (oh the decadence hahahahaha) watching How to get away with murder on Netflix. (I have binged on it so much I can’t contemplate watching anything else until it’s completely finished).
I am currently trying to choose between 4 ‘different’ creams that are nigh on identical. It’s great fun and I’m driving myself insane going round in circles. Hahahahaha
