I had a lot of feed back from my blog last week, all of it positive which is nice to see, and really I’m so grateful for it, so thank you. I know Stoma-ing is tough sometimes, it is for me too, but on the whole it’s amazing and I love my life. I fully appreciate this may sound weird to some, I imagine it depends on your starting point too.
One friend agreed that she is very happy with her stoma because she was full of gratitude for still being here. She’s a fellow cancer survivor. She was left horrified a little while back when a work colleague actually said this to her - “I’d rather be dead than live how you’re living with a stoma!”
When I read her message I was so enraged with so many different emotions, in my entire 8 and a half years of having my colostomy I have never encountered anyone say anything so offensive. I never understood when people go public with their stoma stories and say they are doing it to fight the “stigma” of ostomies, in my ignorance and naivety I didn’t really think stoma stigma existed, I knew ignorance existed because before I had mine I too was unfamiliar with how it all works but stigma, no, I felt it was perhaps a negative connotation that the stoma owner was putting on themselves because they no longer felt “normal”. But oh my god how wrong I was!
I love people asking me questions about my stoma, ask me anything you like, and indeed they have from questions about my missing butt hole to farting, I have no issue with that whatsoever, everyday’s a school day so if you can teach someone something they didn’t know that’s fantastic!
But saying dead is better than a bag? In fairness everyone is entitled to their own opinion, not sure you need to share it with anyone especially someone you know is living with a stoma, but there you go, we’re all different I guess. But to me the sheer stupidity of the comment speaks volumes for this person. I actually pity them, like proper pity, what a poor poor soul of a human.
Don’t get me wrong, I understand that most people aren’t likely to jump at the chance to have a colostomy or any other form of stoma unless they need it. And I know from personal experience the thought of a stoma can cause sheer horror (Although you really should consider it if you don’t have one, it does make life a lot easier in some ways hahahahaha).
But let’s just take a minute to digest what was said to her. “I’d rather be dead than live with a stoma”. Really???? Dead???
Are you kidding me? Dead? I came to stoma owning through cancer, so my option was to die or poo in a bag.
But even on the day that I was told I would have to have a permanent colostomy, a day so brutal and so traumatic that I thought I’d be sick there and then in the surgeons office I never once considered DEATH as an alternative, I guess it was an option of course....just not one I explored!! ;)
Even when it had sunk in later that day, and the days following, even when I truly believed I’d never see my friends in the flesh again (I was quite prepared to become a recluse, just keeping in touch by phone and social media) even then it never once occurred to me that I’d rather be dead.
I fought like a bitch to stay alive. I dug deep and ploughed through my treatment ~ determined and focused, even when it was a huge battle.
As you know, I’m very lucky, because even though I was so traumatised pre op ~ I was literally crying as I was being marked up for the operation, I remember my tears falling down my cheeks, but trying to be brave, I felt so alone and so scared.
But once I came round and saw my pink blob I fell instantly in love of sorts, I felt a rush of emotion, similar to when I had my children, I can’t explain how or why I felt that way, it felt otherworldly. I certainly didn’t expect that to happen and nor did the people round me. My surgeon told my husband that it was maybe elation of being alive and that I’d hit the ground with a bump once it had sunk in that it was to stay for the rest of my life. But that never happened I still feel as elated and at peace with my stoma as I did the moment I came round from the surgery, I am so very lucky, and incredibly grateful for it, because that doesn’t happen for everyone. I’d say I was in the minority.
Most people do get where I am eventually though. It does get easier with time.
It’s a huge change to take in, it’s a monumental change to the ‘norm’. One day you’re using your bum seated on the loo, the next you’re standing at the sink washing your actual bowel on your abdomen.
It’s such a huge change and so unnerving, that counselling should come as standard, this isn’t something that’s offered, the NHS don’t offer it, but surprisingly nor does the private sector. I was treated by private medical throughout my treatment and never once was I offered counselling. The medical side was great and informative but the emotional side was absent.
I’d say it’s fairly obvious that with something so life and body altering and traumatic people could use some support too.
Before my operation I could have done with some support, preferably from someone who had been through it. Obviously I wouldn’t have needed it post op as I had some sort of weird celestial assistance with my emotional well being, but like I said, I’m the weirdo here, it’s not terribly normal to feel content and joyous after a hole has been cut in your tummy for poo to flow out.
But that said I did struggle and STILL struggle emotionally with the loss of my womb and ovaries to the treatment for the bowel cancer. I could have really used some emotional support for this. I had to have chemo and radiotherapy, it was this treatment that destroyed my reproductive organs. I was 36, I wasn’t done with them and to me the loss was devastating. It’s what made me a woman, boobs may make you look like a woman but it’s the inside stuff that actually makes you one, or rather made ME feel like one, I can’t speak for anyone but me.
I remember very clearly the day my oncologist went through what would happen whilst I went through treatment. He said “you will lose your womb and ovaries to the radiotherapy, as it’s collateral damage, but the good news is you won’t lose your hair with this chemo”
He was/is a wonderful man, I owe him my life but I just looked at him and said “errrr my hair is the least of my worries as it would have grown back...my bloody wombs not going to is it!!!!”
I still feel unsettled and incomplete without them, pooing in a bag is nothing for me compared to that loss.
HRT is meant to be this wonder drug that makes you feel amazing, and that might be the case if it’s used in the normal way for older women going through a menopause at the right age, but I’ve been on it from the age of 36 and I still have night sweats, insomnia and all the other menopausal delights. As with everything that has come my way through life though I take it in my stride. It’s done, I’ve had to mourn it and move on.
I’ve never had counselling, but I’m sure it would be so helpful and have such a positive effect for lot of people going through any trauma caused by surgical changes to their bodies. It really should be available to those that want and need it. Embracing change and tolerating change are two very different things.
Wouldn't life be amazing if we could all embrace our new bodies with confidence and a sense of calm.
My life now is a very different story to what I thought it would be pre op. I went from thinking I’d never see my friends ever again to being far far more sociable than ever before.
Mainly because before I was diagnosed with advanced stage cancer my life was amazing but in some ways miserable. It was confined and defined by my need to be near toilets in case emergencies arose, which they did often. We couldn’t really go anywhere or do anything because I was too scared to be too far from loos.
I was led to believe by GP after GP, year after painful year, that I had piles and IBS and was treated accordingly, I can assure you without a shadow of a doubt that Preparation H and Fybogel are not the correct treatment for cancer.
Once I recovered from my operation a whole world was waiting for me to play in! No restrictions, there was no stopping me. Just six months after my AP resection I was laying on a beach in Cuba. Have bag, will travel!
I’ve been to more places in the world bagged, than I ever did in my bag free life.
Christmas 2010, Cuba.
Just a quick question - does my life look like I’d be better off dead than bagged?!? Hahahahaha
Last week was a whirlwind of lunches. Catching up with friends, a good meal and having a good chat are some of life’s greatest pleasures.
Donna and I had a great catch up. She’s amazing, she is currently being treated for cancer in her lung (a secondary to one from her bowel), she’s so tough and so fit (she puts me to shame, literally as we compared steps on our step counters hahahahaha) that her surgeon is willing to operate on tumours that were thought to be inoperable. That’s how tough she is! A word of advice to us all get fit, and get fit quickly it could just save your life.
I had so many lunches out last week I was beginning to panic I’m not going to fit in any of my holiday clothes next month (Yes, I’m off again on another adventure) I’m not one for abstinence...if there’s a dessert menu I’m all in! Hahahahaha
We had such a chilled weekend, Sunday was fantastic, I woke up to heavy frost and freezing temperatures, I love those sort of days.
I like to get the dog out on the frozen mud so she’s still clean when we get home. Heavenly. :)
Then in the afternoon my gorgeous cousin Emma came over with her family for a roast. We didn’t get a chance to catch up over Christmas so we did it now.
I thought I might as well dress for the occasion, I love a bit of dressing up, look good - feel good and all that.
It was a slightly different outfit to the one I went dog walking in, I have a photo of that look....I feel pyjama’s and coats are perfectly fine dog walking wear but I cannot and will not put it on here! Hahahahaha Chris very kindly took it, catching me off guard. Lordy mama!!! Hahahahaha
Dress by Michael Kors, Shoes from Mulberry, Tights from Boots.
Gravel camouflaged shoes are perfect for outside photo ops! Hahahahaha
We had such a great day. A full roast, Christmas crackers and a quiz.
You have to get a game called Linkee, it’s brilliant! We laughed so much, my cheeks hurt.
Just curious, anything here look like a fate worse than death to you? Hahahahaha