This came up as a memory on Facebook. Eleven years ago to the day that I first heard about my treatment plan.
I knew I had cancer by then, and therefore Chemo and radio therapy were no surprise.
What came as a surprise (shock, horror, confounded, unforeseen, unexpected, traumatic) was the fact that I would require a permanent colostomy…on top of which, I’d need my anus to be sewn up (I mean, if you think about why would I need a back passage if there’d be nothing to transport).
I think needing the colostomy permanently, surprised and shocked me, but I found the part where my anus would be sewn up extremely traumatic.
I have no idea why, maybe it was all traumatic but that bit just stuck in my overly whirring brain?
I don’t know how I got past the trauma that I felt about it. I think maybe I was just swept along in the tidal waves, which felt like they kept coming and crashing into me. But each wave that hit moved me I moved further along to the end goal, which obviously was survival.
I think the saying “what doesn’t kill you makes you stronger” is actually very true.
I had limited knowledge of stomas prior to my diagnosis, I certainly had no real life experience of them.
An aunt’s mother in law had one and it had been mentioned in passing over the years, but not deeply discussed.
So that meeting, after all the tests was the first time anyone had mentioned a stoma.
I can’t remember the meeting, I know where the meeting was held, but that’s about it. I suppose I have blanked it out. I can feel that I wasn’t in a good way about it. But I can’t remember if I cried or if I sat screaming into the wind, or if I sat there silently stunned. I simply can’t remember at all.
Look how far I’ve come….it needs saying and stating for the record that I’m not special, I’m not inspirational, I’m not brave, I’m not heroic. Ultimately, what occurred was I ran out of options and had to get on with life.
If it’s a case of sink or swim I am never going to actively choose sink. But then again, I didn’t choose swim either. It just happened.
I had a few weeks of chemo and radio to digest what I had been told. I thought some miracle might occur and I wouldn’t need the colostomy. But my surgeon made it very clear that in studies, the people that only had chemo and radio didn’t make it to the 5 year marker. The only way to hopefully make it to that date, was to have the drastic surgery.
(First off, I felt for those poor bastards in the test cases that weren’t given the chance to have the surgery. In many ways on hearing that it made me feel “lucky”, because no one was trying to offer me up as a sacrificial guinea pig.
But at the same time I didn’t want the op either).
So I went home from that appointment to lick my future wounds and slowly come to terms with having my bowel brought through my abdominal wall, turned back on itself and sewn to my belly. That was, without a doubt a complete mind ****.
I didn’t know anyone with one, so it’s not like I could ask anyone.
In fact it’s only been in the last 6 years of writing my blog that I’ve interacted with people with stomas.
I wasn’t actively avoiding people with stomas, but I wasn’t actively seeking them out.
I haven’t ever felt the need to get support. For anything I’ve been through as it happens. In 47 years I’ve fitted in quite a few bumps in the road.
I’m self contained and self motivating. Plus I have Chris and he’s all the support I need.
But it occurred to me about 6 years ago, that although I don’t need support from others, I could use my positivity to support others! Why it hadn’t occurred to me before I can’t tell you, because I don’t know.
All I know is, it made sense to pass on, not just hints and tips of how to dress well with a stoma, but show, really really show, that it’s not the end of the world or the worst case scenario, it’s actually for me, and others - the beginning of a better, new way of life.
I posted this 11 year old memory on my Facebook. A dear friend asked the question “what would you say to the before surgery self now?” And this was my reply;
I know exactly what I would say;
“Hey Suzes (I’m very informal with 11 years ago Pre op me),
You won’t believe me when I tell you this, but actually this blip with cancer and this colostomy is going to be the making of you.
You will spin it and take all the positives you can from it.
You won’t believe me when I tell you you’ll travel further than you ever thought achievable.
And see things you thought only possible in your dreams.
This new way of life will actually be better than it ever was before.”
*Pre cancer diagnosis, and living with the utter hell of full cancer symptoms for a very long time, I had a very small life. Defined and ruled by my need to be near a toilet. (If you’ve shit your knickers on more than one occasion, if you’ve been in such excruciating pain you’ve spent time biting on a flannel to try to go to sleep, then I can assure you, you can ace colostomy owning).
Post bag I have been to New York City multiple times, (going again in November this year) I have sat on a beach in Cuba drinking mojitos, lived my Pretty Woman fantasy in The Beverly Wilshire, and sat where Diana sat at the Taj Mahal, and so much more.
Have bag - will travel (when covid restrictions allow).
All this from a woman who didn’t fly for 8 years prior to diagnosis. I had a fear of flying, which cancer cured. But I also had a fear of messing myself in public. Which treatment definitely cured…Yes, yes, bags can leak, I’m not immune to the humiliation myself, but I find that other humans are far more sympathetic to a bag leak than they are a pooing your pants (knickers) incident.
It’s incredible that I went from scared of life to living it in vivid full technicolour! And not only that, but sharing it with other people. so they can do the same.
I could have kept my colostomy a secret. But knowing how many people I have helped reassure that life with a stoma is ok makes me proud of the fact that my brain said “**** it! Tell the world what’s happened!”
These blogs have had well over a hundred thousand reads.100k! :o
I’ve had hundreds of emails to say “I thought I’d have to hide away and now I know I don’t”
That makes my heart sing. Because I know, for me personally, if I had hidden my stoma, I’d only be living half a life.
Of course that’s not to say you can’t live a perfectly lovely life and keep a stoma secret. The wonderful thing about life is, we get to choose how we live it. How we think is the best way for us.
So thank you for reading these ramblings, thank you for letting me into your home, and for some of you, into your hearts too. I am and will always be forever grateful. xx
The most important thing about colostomy or any stoma come to that is that you find peace with having one.
There’s no point to dressing well if on the inside you feel wretched.
For me dressing well and feeling confident, goes hand in hand with being ok with my stoma. I do realise I’m very lucky. I’m lucky in that I feel incredibly body confident. Even more so than I did when I was skinny and young Pre diagnosis.
(I can’t explain any of my positivity, I can only think it’s because I’ve got a husband that worships me and treats me like a goodness (no, I have no idea how I, of all people, got that lucky either. It’s often a question I ask myself, and Chris come up that). :)
I am also lucky that I haven’t had to face a lot of the struggles that others have. I didn’t have a career before my cancer diagnosis so I didn’t then have to face going back to one afterwards.
I can imagine it’s incredibly difficult to return to an office full of people for example, if like me you have a very active and at times noisy stoma.
If you get up and get on with your life you are a hero!
***********
Right, last week was much better to the week prior. Everything but sleep is back to normal, and I suppose after 11 years of sleep issues, we could well class that as my normal. Aggravating, but normal now.
I felt much more chipper. My back spasm sorted itself out. My constipation seems to have righted itself too. Life is good.
I had to go off for a blood test, just to check for anything nasty re the bladder.
I decided that I’d get dolled up as it was a day out (a day? Well, it was a total of 45 minutes but in this day and age that is a day out).
Blood test chic. hahahahaha
For blood tests I like to dress practically. Short sleeves are a must, a cardigan if it’s chilly, for quick access.
This will be repeated for covid jab too.
Top from Tommy Hilfiger, Cardigan from The White Company, Leggings from Mint Velvet, Shoes from Prada
Oh these shoes were so happy to be out in the real world, living there best life for 45 minutes. :)
The test was actually easy this time, note to self - always book blood tests for the afternoon. Morning ones I’m as dry as a bone inside and it’s so hard to get blood out. I had spent the morning hydrating and the blood flowed out merrily for a change
So that was the main highlight for week day fun. But I had planned a big treat for Chris for Saturday.
I had left it too late to book another afternoon tea from the restaurant in the village. By the time I remembered, they had sold out.
So I embarked on a great adventure!!
I made my first scones. (Yes, I am aware that small children can make them). I checked a recipe that I felt I could follow.
Chris went off to do some work (or so I thought).
Anyway I set to work in the kitchen making a batch of cheese scones and a batch of sweet ones.
I really worked hard on following the instructions (not my strong suit) and making sure they didn’t burn (equally not my strong suit).
Obviously I dressed up for the occasion, because let’s face it, anything unusual is an occasion in lockdown.
Dress from The White Company, Boots from Gucci
I made the most colossal mess in my kitchen…and of myself!
But…
…I made the most delicious scones, as well as a ludicrous amount of mess!
I did have to laugh. I was in the kitchen pottering about, dressing the table, making it as special as I could.
I then called out to Chris “I’m readyyyy”
What I didn’t know, because I just assumed he was working, was that he had fallen asleep. Quite a deep sleep by the sound of it because when I called out “I’m ready” he woke up with a start, and nearly had a heart attack as to where he was and what the hell was being expected of him!? Hahahahaha Hahahhahaa hahahahaha
The poor man was beside himself! Hahahahaha
He was very grateful and delighted, once he discovered he was only expected to feast on scones. Hahahahaha
He was very happy with my attempt of scone baking. I have to say, I was pretty impressed too.
We then felt very brave (we’re getting so bold) and went off to our local garden centre. For people who, post my cancer, got a taste for travel, we have adapted well to the highlight of the weekend being a trip to see plants and buckets. :)
Coat from Sainsbury’s
We stocked up on everything we needed for a day of pottering in the garden the following day.
I’ve had a fancy, a yearning if you will, to have window boxes of red geraniums for a number of years. I forget by the time summer comes though, but not this year I didn’t.
I have everything I need. Except gardening expertise.
But I’m willing to wing it and see what happens. Watch this space…if it all goes terribly wrong I won’t be mentioning this foray ever again. ;)
***********
Sunday was bright and sunny, unexpectedly so. The forecast had been for scattered showers all day. But the sun was out and the temperature wasn’t too bad either.
I decided to celebrate spring…by dressing as it! Hahah
Dress from Ralph Lauren, Shoes from Jimmy Choo
It can’t just be me that thinks this dress is the embodiment of spring? I saw it in the store and thought it was perfect for the 3 weeks a year where we get decent enough weather at the right point to be able to wear it. ;)
I set the table in the garden all posh and fancy.
…in preparation for Ben to bring round Greggs….
Who doesn’t love a Greggs vegan sausage roll and a Belgium bun (notice how I used the singular terms, knowing full well I ate more than one of both) on a Sunday morning. Food of the gods! Hahahahaha
Once Ben left, Chris and I decided to take advantage of the unexpected sunshine and get stuck into the garden projects that we had planned for the year ahead. We had spare time and there’s no time like the present and all that. :)
I did change into some more suitable clothes. I’m not completely bonkers. ;)
You see the black pipes in evidence photo A? Well those pipes, believe it or not were driving me to distraction. Why? Well before Sunday they were a medley of black pipes, white pipes, black pipes with white wall brackets. And a red pipe thrown in for good measure.
Well I am a very visually stimulated person and the hodge podge of pipage was causing me some real distress (I mean, within reason. Not on the level of I need a colostomy, but definitely getting up there hahahaha).
Well now my distress has decreased as Chris sprayed them all black until the world reopens and we can get them all replaced. So that was one job jobbed.
As you can see the window boxes are now in place ready to welcome an abundance of geraniums come summer.
Photo A
We gave everything a good tidy up and clear out.
We do need yet another skip, we are keeping that company in business, as we have yet more garden detritus.
We cut the grass, we swept and raked. We made progress. Which is always good for the soul.
I changed the vivid white lights I bought last weekend for the olive trees, for warm white. I bought vivid by accident. I’ll take them to Spain house or something. I’m far happier with the look warm white is giving.
The seating area is all ready for guests, as of 29th March you can have 6 visitors in your garden! Whoop whoop!! Hahaha
We are ready for the exciting times ahead.
Oh, and Chris has his corona jab next week, so hello going back out in the world to live again!! Hello you!!
I’m going to have to wait a bit as I’m 47. Hopefully soon though. Please please pretty please.
xx