This is what I am sure many people think when they see me go into a disabled toilet, especially when I use my RADAR key. I am sure people think that I am just trying to skip the queue when I hop into an empty disabled toilet, but this really isn’t the case. I don’t overly care what people think but I guess there is a small part of us all that doesn’t want people to think we are ignorant morons! And by that, I mean I would never park in a disabled bay and if I did I am sure people would secretly tut tut at me for doing so and so I suppose I don’t want people thinking that of me when I use a disabled loo. You see, I have an Ostomy, which means I wear a stoma bag which is attached to my stomach to collect waste from my small intestine. I had a debilitating bowel disease called Ulcerative Colitis which got so bad that I had to have emergency surgery to remove my large bowel. I don’t look disabled, there is nothing you can see by looking at me that would indicate my need for disabled facilities, I am not in a wheelchair, I don’t have any missing limbs, I am young and look fit. But what you don’t see is my stoma bag I wear beneath my clothes, the bag that fills up gradually over the day, the bag that needs emptying regularly, the bag, that if not emptied will burst and I will end up covered in poo. No-one knows you wear a stoma bag, it is impossible to tell, they are surprisingly discreet, but it is something we have no control over, we can’t tell it not to fill up, we can’t hold on to it until it is more convenient. So when the need arises to empty, I personally prefer to do it in slightly more private surroundings. Like any poo, it smells, but unlike (and I know this may be a bit TMI!) people with large intestines, it is more acidic, more raw, it hasn’t gone through the usual bodily processes. So it’s nice to have some privacy and not feel paranoid about the smell. Now, I generally don’t care what people think, I am not going to see them again, and when I have to use a ‘normal’ toilet I have deodorising sprays and perfume which helps, but I still like the privacy. There are also times in which I may need to change my bag, it is rare, as once done at home I tend to be ok for the day but every now and then, the inconvenient leak happens which requires a change of bag. Can you imagine trying to manoeuvre yourself in the smallest cubicle known to man, having to deal with changing a bag and all the paraphernalia that goes with it, plus the need for access to water? Unfortunately, people assume that to use a disabled toilet you must look disabled, what people don’t realise is that there are people like myself who need use of a disabled loo. I think the worse thing for me is when I may go to a busy bar or club on a weekend. It fills me with dread that I may need to use a ‘normal’ toilet to empty, as I have said, I am not ashamed, but on a busy weekend, where alcohol is involved, people are unforgiving and not backward about coming forward if they think the cubicle smells. It’s a horrible experience and one I try to deal with as best I can, I just get on with it, but it is these times especially that I prefer a disabled loo. But you know what? In a busy bar or club the disabled toilet tends to be locked and only a member of staff can open them (they often don’t use the RADAR key system). This means that I have to find a member of staff to open it for me and then I am having to explain why I need to use it when they tell me it is for disabled people only!! I could name and shame but I won’t, but the point is that I don’t want to have to explain myself to anyone, why should I? I understand that they are worried about drugs but why should those of us that don’t look disabled need to explain our reasons? Fortunately (well the majority of the time) it isn’t an ‘emergency situation’, when I had Ulcerative Colitis (which basically means you have barely any control over your bowels) if I had to stop to ask for a key or try to find a member of staff then I may have sh** myself there and then!! So, I guess what I am trying to say is don’t judge those who don’t look disabled but need to use a disabled toilet, bars & clubs listen up and do something about your locked disabled loo situation so those like me, don’t have to explain ourselves and if you walk into a toilet cubicle that smells, before you turn your nose up in disgust, just think that someone may be really suffering.
I was at the Brighton Marathon on Sunday, nope not running it, just the thought of that makes me feel a little bit sick, but supporting the runners that were running for Beating Bowel Cancer. Brighton is one of the areas I cover so it was nice for me to go along and cheer the runners on as they pushed themselves along the gruelling 26 mile course. I am full of admiration for Marathon runners, it takes so much dedication and training and must be, quite frankly, exhausting. My mum volunteered to come and support the charity as well so it was great to have her there. One of my friends took part (she is also doing the London one as well – crazy!) and she waved at us as she came by at the halfway point – she looked fresh as a daisy, how?? If that was me I’d be crawling by that point, I won’t even look like that halfway through my 10K! In fact my goal, other than completing the course is not to throw up at the finish line as I did when I took part in a 5K many years ago! The Marathon had a fantastic atmosphere and I was glad to be a part of it in some way and it’s great that people are running for us at Beating Bowel Cancer.
Bowel Cancer is the UK’s 2nd biggest cancer killer and yet it’s a cancer that still does not get the exposure it should. People are still too embarrassed to talk about their bowels and yet they shouldn’t be – early diagnosis is the key to saving lives. I can totally relate to the embarrassment factor but once you poo into a bag attached to your stomach it’s suddenly not so embarrassing anymore! This month is Bowel Cancer Awareness Month and at work we have a #LiftTheLid campaign which is to get people talking and raising awareness of symptoms http://www.beatingbowelcancer.org/liftthelid. I hope I can encourage people to talk about their poo and bums and help people to realise it’s not so bad.
Yesterday I was at Channel Radio on Who Cares Wins radio show talking about the Charity and our work, the presenters were really supportive and it was a great opportunity to promote Beating Bowel Cancer. I also love a microphone so any excuse to talk into one! But if you fancy a listen then you have until Monday http://www.channelradio.co.uk/listen-again-Monday/ and pick the Who Cares Wins section.
I have always said that when you go to hospital you leave your dignity at the front door and if you are lucky you pick it up on the way out! When I was admitted in 2011 (before op) I was given a side room for a couple of days. Anyone who has been in hospital will also know that the doctors do their rounds once a day and you don’t want to miss them, it’s your only chance to discuss your illness and treatment. So in a side room you only need to be in the loo to miss the rounds, I was often in the toilet due to the nature of my illness, and on one occasion I heard the doctors come in – so I shouted “please wait, I won’t be long”, I exited the toilet to be greeted by three very good looking junior doctors! Oh the shame, I couldn’t believe it, I was stood there in my moo cow pyjamas knowing these doctors knew I’d been for a poo! But I got over it – you have to, and have never been embarrassed since, even when Dr McDreamy (as my sister referred to him) had to question me on the frequency of my stool movements! So you see, it’s not so bad! So talk about your poo, read up on the symptoms, listen to your body and get checked out if you are not sure.
Oh and if you want to encourage my little 10K then text SHER78 £5 to 70070 and not only will it give me a boost it will also pay for a ‘Just Diagnosed’ information pack to go out to a worried bowel cancer patient.
When I was first told I would need a stoma I cried, yes a little bit of it was because I was worried and nervous, but the main reason I was so sad was because I had just been shopping to Bluewater and thought of those lovely clothes that may never see the light of day!! There are parts of my hospital stays which are blurry, but I definitely remember saying, through a barrage of tears “but I, I, I.have just been shoooppping” – cue more tears. I think probably most women will understand this, it is such an important and necessary part of our lives. Shopping is to us what football is to men, unfortunately we don’t have regular 90 minute programmes about it which is of course why we must therefore, shop in person regularly instead. As it turns out the stoma didn’t stop me wearing any of the clothes I bought, it was only the cropped tops that had to go (only joking, I haven’t worn a crop top since I was about 20!!). It was a lovely excuse to go out and buy more clothes that were suitable for my recovery, then there was the ‘I am fully recovered celebration’ shopping spree, the ‘I am going on holiday’ shopping spree…you get the picture.
I am very fortunate that in my life I have two wonderful people who positively encourage my shopping. One is my mum, sometimes referred to by my sister (who is also wonderful but that will always go without saying) and me as ‘Bank of Mum’. Oh it is so wonderful and envied by many, we go shopping with mum and she says to us to “put in on my credit card as it won’t need paying for x amount of time” (usually a good payday away). We question an item and what colour should we get it in to which we hear the joyous cries of ‘get it in both you can put it on my credit card’. Yes it is wonderful and fantastic for the wardrobe, not so wonderful when payday actually comes around and you have to pay for the 2 tops in 2 different colours you are now bored of! Mum taught my sister and I well in the art of shopping, perhaps she could have better prepared us by teaching us the art of buying property, but as mum says “when the going gets tough, the tough go shopping”!
The other wondrous shopping companion is Mike, also handy with his credit card (I even get away without paying it back – crafty) but what is more fabulous is his love of high heels (not on himself and not in weird foot fetish way, well not that I know of!) and his surprise that us girls can get them at such bargain prices. He also positively encourages my shopping and doesn’t bat an eyelid when I proclaim that I must have a new dress, he just tells me to do it – isn’t that fantastic?
My latest obsession (apart from dresses and high heels) is bikinis and swimsuits, River Island do an amazing range and I can’t keep away. Great for us girls with a stoma, now just because you have a stoma doesn’t mean you can’t wear ‘normal’ bikinis, I am not ashamed of my stoma and am happy to have it in the open. However, on holiday, when swimming and sunbathing, I just feel more secure with a high waisted bikini or a cut out swimsuit. I love the swimsuits that look like a bikini from the back but cover the tummy and I am so glad all the high waist clothing is in fashion. Trouble is I have enough swimwear to last me a month’s holiday but I still can’t stop buying it every time I see a new suitable garment, always coupled with the excuse that ‘I should get it whilst I see it’ (a mummyism).
Despite the fact that mum and Mike make good shopping companions, I love a good shop with my sister, this is usually because a shopping trip ends up with cocktails in a bar. Unfortunately we get more reckless – not with the shopping (isn’t tipsy shopping great?) it’s usually the fact that we are surrounded by bags that we decide a few extra pounds on extravagant cocktails and ‘oh we may as well just get the champagne, it’s no more expensive’ can be justified, as after all it won’t make much difference to the overall spending!
Of course none of this is great for my bank balance or my bulging wardrobes, but who cares, shopping it is too much fun to stop. So I must sign off as I have a code for free next day delivery and I have seen a dress I really need…..