As it’s mental health awareness week, I’d like to address the fact that having any major surgery (and I’d say particularly one like I and many others have had where surgery means our poo is now collected in a bag stuck to our bellies) can be very detrimental to our mental health.
It’s really not difficult to understand why. We’re brought up from a young age to know that poo is dirrrrrrty!....private and not up for discussion in polite company.
There you go, right there, that’s where we’ve all been going wrong all this time.
So when it comes to someone ending up needing a stoma for what ever reason and my god the list of possibilities is endless we are instantly horrified and traumatised.
Dirty, smelly, vile all sprang to my mind when I was told what I was going to need to have done to survive. I wanted to run away and hide.
I know a friend of mine, who was suffering from bowel problems for a debilitatingly long time was told she needed a permanent stoma by the doctor saying to her “I’m afraid we’ve come to the end of the road”
He was referring to her having to have a stoma fitted but she at first didn’t comprehend that and thought he was telling her she was dying.
If even surgeons fitting the bloody things think it’s the “end of the road” what are we as wearers of stomas meant to think!??
It’s not exactly selling it in a positive light is it! And it should be seen as that, it’s this whole new road! Allowing most people to actually have a road to travel...and comfortably too!
The impact on a stoma users mental health can be colossal.
I know my immediate reaction was one of fear and loathing for this disgusting idea.
My choices were limited, live with a body with adapted bowels and a bag of poo or die with a perfectly intact body....
It’s not something that I really had a choice in. I wasn’t weighing up the options thinking ooh what shall I do. Dying wasn’t really an option I wanted to pursue if I could possibly help it.
Therefore I had no choice but to have the non reversible surgery. But that didn’t make me feel any better about it.
I was very poorly during my op, I lost nearly 9 pints of blood (which is why my darling husband donates his blood. He’s paying it forward for the blood I used and our son Sam used in his cancer treatment) It was only once I woke up from surgery that my entire being had reset to a very positive and I would say almost loving relationship with my little pink blob of bowel.
I can’t explain on here what happened, I could try but you’d look at me as if I was mad.
I will say I felt safe and cocooned in love. I felt in that moment of murky semi consciousness that I knew I could deal with anything my stoma would bring.
I would also like to say that I am not the norm, I just got lucky and my mind instantly reset to positivity.
There is no earthly reason why someone would wake up from an op - with their bowel now on the outside of their body and think “oh hello you ~ how marvellous, how wonderful and clever you are”
So if this wasn’t your experience or your first waking thoughts after surgery, it’s ok, you’re the normal one out of the two of us, not me.
I totally, 100% get why feeling happy about pooing in a bag wasn’t what happened for you if that’s the case, that said, it doesn’t mean it won’t ever happen, it can take time, sometimes even a long time but most people will come to terms with having a stoma at the very least, and some will go on and enjoy it and even prefer it! I mean that, I actually do prefer it!
(There is support out there for those that are understandably struggling to come to terms with the enormous changes that have been made. It’s vital that people get that support when they need it too.
If you are struggling, reach out. There’s an abundance of support groups on social media, they are there to help, we all need a helping hand sometimes xxx).
I have some friends with proper bottoms, yeah, you know those weird people - naming no names but they know who they are that end up needing a poo every time they leave the house and a toilet isn’t available. :)
I swear to god as soon as there’s no toilet in sight that’s when they need to go the most. Maybe it’s like if I say “now don’t even think about eating those cookies in the cupboard” and all you’ll want now is cookies. Hahahahaha
I’ve had to hang outside many a toilet waiting for people. Toilet users take up so much time with toilet using! Hahahahaha
Me? Well I’m bagged and ready to go at a moments notice, I’m like the Duracell bunny, once I’ve changed I just keep going and going.
I make light of my situation, perhaps that has helped me overcome the trauma of what I had to go through.
Maybe just having a good sense of humour has helped, maybe it was devine intervention, who knows.
All I do know is, before my op and since I was a young teen I had cripplingly low self esteem, low self worth, no self belief or confidence and an eating disorder to boot for years (I’d starve myself thin...but starving yourself thin doesn’t make you happy, it just makes you thin).
Put it this way I was purposefully and mostly self inflicted 7 stone 9 pounds not long before I was diagnosed at 36. (Admittedly having undiagnosed cancer does help keep the weight off but so does the not eating I used to do to keep my weight low). I now weigh a whopping 10 stone 10 pounds!! I’m categorised as Overweight by the NHS BMI checker and yet I’ve never felt happier, more confident, more powerful even.
I look at myself naked and I see ME! The real me, the me that loves life and food (clearly), the me that flies merrily around the globe, the me that will talk to anyone. The me that started a blog that’s been read over 70 thousand times.
The skinny me didn’t do any of that. The skinny me was too worried about everything to do anything bold or fearless.
I wear my bikini in public with pride....that might be a slight exaggeration, but I certainly wear it without shame!
Cancer took a lot away from me, my bowels, my rectum, my ovaries, womb and my comfort and my security of a cancer free blissful life but recovery gave me this sense of strength, confidence and power. So for everything it took away, it gave back in spades!
I have never starved myself in the nine and a half years since diagnosis too, to my newly reset mind my self worth is not calculated on my weight. It feels very freeing. It helps that we no longer have any toxic people in our lives. It does make life a lot easier.
That said, I’m not super human, I do still have some mental health issues that stem from having had cancer. I have desperate health anxiety. Ridiculously, but understandably so, it frustrates me but I understand it. I give myself the understanding and compassion I deserve, most people would be pretty freaked out by our combined familial experience. (Our at the time 13 year old son was diagnosed with stage 3 cancer (NPC), 6 months before my advanced stage bowel cancer diagnosis, we are both very blessed to be in remission).
Anyone who’s had cancer or anyone with a loved one that’s had cancer knows that the fear of it returning never leaves. But we hush the fear for the most part and live the happily ever after our treatment has allowed us, but it’s there lurking in the shadows and pops up with every ache or pain we get.
I actually had/have a fear of age 36. I don’t even like it when friends turn 36, I wish 37 would hurry up around for them. It’s ridiculous of course it is. But I understand why it happens.
Thankfully I have had many birthdays since I was diagnosed at 36. And yesterday I reached the big FOUR SIX!
I’m such a grown up now, 46!! Get me! Hahahahaha
I have had the most wonderful build up to and birthday.
On Saturday Chris, Ben, Kaitlyn and I went up to London, first was the shopping part of the trip, Chris bought me a beautiful present, I’m very lucky as he’s very generous. He’d give me or the boys his last penny and he’d enjoy watching us spend it. He’s really very lovely.
Then we headed off to watch The Book of Mormon, this was Ben’s birthday present to me. It’s not for the faint hearted or easily offended...or even the not easily offended come to that. It’s a tad full on but as I’ve got a potty mouth and a warped sense of humour I loved it, and all the people in my circle have the same potty mouth and sense of humour, so we’d be safe going again.
Whilst enjoying a drink in the bar beforehand I was surprised by the demographic of the audience. I appreciate it was the matinee but it was full to the brim with elderly people in zip off trousers and fleece cardigans, it could have been a hiking gathering or WI meeting, I foolishly prejudged and thought half the audience would leave at half time.
There were 3 people in front of us, I’d say very late 70’s but more likely in their 80’s.
All the way through the first half I assumed they would leave at the interval and never come back (it’s pretty hard core dark comedy, it even had me wincing) but they didn’t.
After the standing ovation at the end of the show I decided to ask them if they had enjoyed it? An enthusiastic very much so came the response!
I said that I was surprised, and one turned and looked me in the eye and said “why? Because of our age!!?” ....
....,errrrrrr, well yes!! Actually, that’s exactly why. hahahahaha
But Kaitlyn very wisely pointed out that I’m still likely to have this same sense of humour when I’m old, so therefore other people must too. She also pointed out that usually people around you will notice the first signs the of dementia because you’ll say rude or inappropriate things. She reckons she’s going to know when and if I’ve get it if I start being polite and sweet natured. :)
The show was a blast, an inappropriate blast but a blast non the less!
What to wear for a long day of shopping, show and food?
The first outfit I put on was quickly ditched after Ben said I looked like a frumpy teaching assistant. Not a look I’ve ever attempted to achieve.
I wore this simply for its practicality for an extended day out. I didn’t like it and I didn’t feel confident in it. But the trousers are super soft and allow me to poo merrily all day.
Top from Modern Rarity, Trousers from Michael Kors, Boots from Russell and Bromley
It did tickle my fancy however that I matched the photo in the coffee table book where Chris bought my pressie from. Hahahahaha
We came out of the show and outside, giving away The Book of Mormon were Mormon’s on Mission. I imagine they were probably trying to save our souls knowing we’d all had a great laugh at their unfortunate expense.
They were really sweet boys. I’ve always found Mormons to be very sweet. I remember when I was a teenager I used to love them coming round door to door, they were always American and that alone is highly exotic and intoxicating to a girl from Romford, honestly I didn’t get out much back then! Hahahahaha
They happily posed for photos with Kaitlyn and I (I’m not kidding myself, I appreciate they were happier about one of us more than the other. Hahahahaha). One of the boys asked Ben to send him the photos which he did. Maybe we’ll make it on to a notice board back in Utah some day. :)
Then it was on to Quaglinos for virgin cocktails and nibbles.
From there we went to Chutney Mary’s for dinner.
Indian food is my all time favourite and Chutney Mary’s is my favourite Indian restaurant outside of India.
We don’t usually go here with other people, we usually just keep it to the two of us but as it was a special occasion...did I mention it was my birthday? Hahahahaha
The food was amazing and Ben even ate some, he has the palate maturity of a 5 year old, although recently it has been expanding it from chiccy nuggets and chippies! Hahahahaha
Sunday was spent perusing another Royal Horticultural Society Gardens. We love to gather inspiration that we do nothing with hahahahaha
Top from Elle, Jeans from Topshop, Shoes from Jimmy Choo
I might not do anything with the gathered inspiration but I do love looking and they always have a nice cafe. ;)
And then came Wednesday! My actual birthday, yes, it’s my birthday, I’m 46 now you know!
In the morning I went to the hairdressers, had a lovely time there, came home at 12 and changed into my pj’s for comforts sake (my belly hadn’t enjoyed the extended period sitting in tight jeans in the hairdressers chair) and that’s how I stayed till we went out for dinner at 7!
I know, I’m living the dream I am!
I was waiting in for a parcel that never came, it still hasn’t come a day later either but what did come was a dozen and a half red roses from...well I’m presuming Chris... ;)
They are absolutely stunning. And they smell incredible.
Top from Reiss, Shorts from Tesco, Shoes from Mulberry.
I had been inspired to wear green by my friends daughter Elle, who had made a birthday card in green as she remembered it was my favourite colour. It’s true, I love the colour green but I very rarely wear it.
I was a tad concerned that I’d end up looking like a chubby Boy Scout but I think I pulled it off ok.
I love the back of clothes to have interesting details and flourishes. I love the gold buttons on this top.
I do believe I’m best viewed from behind. My knees are god awful in these photos. Literally gut wrenching. Hahahahaha.
And I really love these shoes, I’ve had to give up wearing them for the most part as I get vertigo at times and 6 inch heels are not ideal if you’re having a funny turn. I call them my One Minute shoes, as long as I’m not walking for longer than one minute I should be ok, I just wore these to the car and then straight into the restaurant, so I was perfectly safe. (Chris would probably disagree with this bold statement as he saw me walking like Tootsie across our gravel to get into the car!)
Me and my baby boy.
The icing on the cake would have been a cake...hahahahaha, I’m joking Chris I’m joking, I know I tell you not to buy cake. No, the icing on the cake would have been to see Sam, Milly and Zak but they live far away so it’s not like they can just pop over.
We saw them last weekend and we’ll see them again the weekend after next, so that’s perfect to have something to look forward to.
One of the greatest joys on my special day was being taller than my rather beautiful daughter in law, bad enough that’s she’s stolen my baby son from me hahahahaha hahahahaha hahahahaha, (can you imagine being the mother in law from hell?!?)...she also is so tall and lovely that she makes me feel like a dumpy old troll. Hahahahaha
It only took massively high wedges on my part and flats on hers. Hahahahaha
I’ve had the most wonderful birthday, I love birthdays, I’m sad for people that dread them. To me they are the ultimate privilege! Yey me I got another one! I can’t wait for the next 46 years and the 46 after that!! (I have mentioned I have dyscalculia right).
:)
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I’d just like to take the opportunity to congratulate a very special young lady. One of Ben’s friends and our borrowed daughter (we can’t adopt her, much as we’d love to as she has a very wonderful and loving family of her own) has as of yesterday finished her uni degree course!
This kid has battled like a true hero to get to this point. She struggled with her entire 3 years away. From the moment she got there she hated it and doubted her ability.
But on she battled, trudging through the thick, sticky tar she was finding uni and life to be.
I’m even welling up writing this because I know how hard she found it. I remember the many messages saying she wanted to come home and give it up and yet with the gentlest of pushes she stayed there and carried on.
And now she has finally completed the course, everything up to date, handed in, and exam complete. That’s courage, right there, that’s resilience.
Leonie, darling girl, you deserve the world and the moon and stars too...and finally you need never pick up another book or learn anything ever again! Hahahahaha
contact me on;
suzanne@gladragsandbags.org