What was I up to last week? Well on Monday I went up to London for a meeting at the head office of Bowel & Cancer Research.
I’ve become more actively involved with volunteering for them, for a few reasons really. Firstly I want to help in any way I can, as I’ve said before surviving has to be for a reason. And secondly my boys are all grown up, Sam lives in Hampshire with his girlfriend and baby son, and Ben’s bought a flat and is moving out next month. I need to future proof my empty nest syndrome.
There’s little point in my sitting around twiddling my thumbs with nothing to do, weeping about the fact my kids have flown the nest.
I have time to volunteer, I’m very privileged in that way. My actual job only takes up a few hours a week, it leaves me free to do lovely things.
So off I went up to London for my meeting, I’m now part of a PPI/E steering group for Bowel & Cancer Research, we’re just working through our aims and objectives right now.
If anyone’s reading this and wants to get involved contact Bowel & Cancer Research via their website.
Someone asked via Insta the other day if you have to be a professional…that’s very easy to answer - no professional qualifications needed. Seeing as I haven’t got a single GCSE pass grade to my name I can state this categorically.
They focus on research at B&CR and researchers need practical, informative, insightful feed back for whatever they are working on. So as long as you have experience of bowel conditions, IBS, IBDs, Cancer etc then you are the right person with all the qualifications you need.
I decided to wear a dress, I just find dresses the least stressful option. The least likely to leak option really.
I had a bag leak on the way to London to a meeting with B&CR last year and it’s left me rather scarred by the experience, so I prefer to choose the path of least resistance now.
Dresses make me feel far more confident, especially for long days out.
Dress from H&M, Boots from Hobbs
Was I overdressed for the occasion? Yeah, probably. Is that a problem? Absolutely not. I wear what I want, what makes me happy. I dress for me, if anyone else likes it that’s a bonus but it’s not a prerequisite of me getting dressed in the morning.
We had a fantastic inaugural meeting. I came out of there absolutely buzzing. There literally is no such thing as a selfless good deed, yes, I’m volunteering my time but my goodness it’s making me feel useful, happy and buoyant.
After my meeting I was able to catch up with my son Sam very briefly as he was in London too, he lives in Hampshire and works in Bristol so we don’t see him much, but he was up for a meeting for the Ellen MacArthur Cancer Trust, where he now has a volunteer position on the youth board for the trust.
It’s a charity that means a lot to him. After he finished cancer treatment when he was 13, he must have felt quite isolated at times, his friends were too young to make the journey from Braintree up to London where he was being treated at UCLH, and he spent long periods of time up there.
After he finished treatment he was offered a place on an Ellen MacArthur sailing trip and the rest as they say is history, he sailed with them, they trained him up, he sailed for them, as crew and now he’s on the youth board.
So after a wonderful but brief catch up with Sam I headed home feeling very very happy.
Then on Tuesday I flew off on holiday to Spain. I’m so bold these days…or so I thought…
I’ve flown to my house in Spain by myself multiple times. But last Tuesday I had a very strange feeling at the airport. It started to bubble up while I was in Boots getting some holiday bits and then by the time I’d sat down to eat I was almost hyperventilating.
I was texting Chris telling him how uncomfortable I felt.
I was getting to the point where I was going to go home, I just had a horrific sense of foreboding.
I have no idea what happened but everyone started to seem to be behaving suspiciously. I felt so anxious, to the point I was looking for escape routes and safe places to run or hide.
I was sitting by myself, a man came up to me and asked if he could sit next to me, then he turns to me and says “do you have a Norwegian travel adapter?”
This made me laugh out loud and actually did relieve some of my anxiety.
Why on earth would he think I’ve got a Norwegian travel adapter?! It wasn’t like he was asking for an international one, a Norwegian one is quite specific. Hahahahaha hahahahaha
He then asked me to look after his luggage while he goes to order his food. I waited for him to come back for quite a while, but it gave me something to do and took my mind off all the crazy thoughts spinning round my head.
I waited for him to get back, wished him a happy journey and headed off to my gate for my flight, anxiety now more under my control.
Being on my own for a few days before Chris arrives is heavenly, I should send Chris, that poor man never gets any alone time.
My friend asked if I was lonely at all, nope I can’t say that I am, I’ve always been happy in my own company.
It’s heaven to do what you want when you want, eat what you want. Lovvvvvvely. I’d been eating cereal for lunch and dinner, then Chris arrives late Thursday night and by midday the next day he was asking what was for lunch…errrrmmm, Special K actually…he was not impressed! Hahahahaha
See holidaying alone has its bonuses!
Of course him turning up does have its advantages…
He is trip/blog photographer…(lucky thing that he is, taking thousands of shots of me only for me to whine about the fact he’s made me look ugly, fat and grotty…like that’s something under his control! Hahahahaha hahahahaha).
His arrival also means we get to go out and share incredible meals…no no, it’s not just Special K on offer you know.
There was meant to be a photo of a paella but we ate it before I remembered to take a photo of it. I would be the worst food blogger ever. I’d eat it all before I remembered to share it on Insta.
We had the best time, it’s sad that this trip has to be our last for the year to our little house as Ryanair have gone to their winter schedule and no longer has flights to accommodate us.
But we have next year to look forward to.
On our last day I suggested as we’d been so good all holiday that we’d treat ourselves to ice cream from my favourite ice cream shop in the world, not just Spain, believe me, I didn’t get this fat on lettuce you know, I’ve put the effort in and ice cream is a personal area of expertise.
Anyway we walk in to be greeted like old friends…it’s a bit like Cheers bar only for ice cream.
The girl that’s been serving us for the last 6 years breaks it to me that it’s the last day and they’re shutting for winter, this was before I found I couldn’t get a flight there anyway. So I felt truly sad.
I ordered my usual, I’m very predictable, they start scooping my pot before I even say a word.
Chris ordered the same (I have great taste in ice cream and men come to that).
And then a wonderful thing happened…she said no charge, for you for free…
I’m welling up just thinking about it actually hahahahaha.
So then it was back to Blighty and the pissing down rain…I literally cried twice on Monday with back from holiday blues. I left 27 degrees and glorious sunshine to come back to solid rain, and it’s cold too.
I cheered myself up by making a soup I’d seen on Sophie Medlin’s (sophiedietician) Instagram stories the other day.
If you don’t follow her already I really do recommend you do. She has great no nonsense, no fads advice on food and diet.
I managed to not only maintain my weight on holiday, which would have been a first for me anyway…I actually lost weight this time, just by following Sophie’s dietary advice. This is something of a miracle! :)
This has been on my mind for a while now, and I need to get it off my chest. A few weeks ago I saw someone on Twitter say that she had overheard a couple of nurses (of all people!?!) say that they’d rather be dead than end up like so and so…the patient in question has two stoma bags.
It made my blood boil to be honest. Firstly that a health professional could be so insensitive but also that anyone would say that to start with. You’d think it wouldn’t happen but I’ve had it said to me before “oh no they’d rather die than live with a bag”.
Let’s just get one thing straight right now. I thank God I’m me and that my will to live and survive is not determined by my pride or my body’s aesthetics.
Do I understand people’s reluctance to have an ostomy of any kind? Of course I bloody do! It’s not like it’s going to be the number one elective surgery op over breast augmentation and nose jobs is it!?
But people don’t have colostomy surgery for the fun of it. I very much appreciate it’s an option for some for a better quality of life and therefore hard to get your head round. But it was an option with no option as far as my case and many others are concerned.
“Mrs. Doré I’m afraid you will need, Chemotherapy, Radiotherapy and a permanent colostomy as your best chance of survival”
“Oh Ok then thanks for the suggestions, I’ll take the chemo and radio but I’ll leave off the bit that gives me the best chance of preventing a recurrence if that’s ok?”
No…strangely enough that isn’t what happened. All I wanted was to live and I was in a fortunate position that having a minor detour to my bowel meant that I could do just that. Do you know how many people that I’ve known personally that have gone now that would have given anything to be given the option of a bag if it meant they could survive, too many to count on one hand that’s for sure.
So for those nurses who voiced their opinion, of which they are entitled as is anyone else for that matter - I want to say to you YOU have my pity, if you remaining on this beautiful planet means so little to you you’d choose death over a bag or two, I’m so sad and sorry for you that you don’t have a strong survival instinct or belief in your self worth. You pitied that patient, you thought they were the one that was worse off, but it wasn’t them was it, it was you.
I’m a survivor, and long may that last. My strength is in my ferocious desire to stay here with my family, but it wasn’t what kept me here. I did what needed to be done and then I got lucky. That’s all it comes down to at the end of the day.
Sadly sometimes it isn’t up to us, even if people go all through that surgery, and a shed load of ‘positive thinking’ and treatment they still don’t get to stay, but at least they and their families know they did everything in their power to. That’s strength, that’s determination. They didn’t give in at the first hurdle, they jumped over every hurdle but still it didn’t free them. That’re the people those nurses insulted, the people who were desperate to stay but didn’t get lucky.
Was I overjoyed when I was told I needed a colostomy? Oh my god no, I was horrified and traumatised BUT at no point did I want the alternative!
By saying I’d rather be dead than have a bag while you’re fit and healthy is immature and ridiculous, plus you’re probably kidding yourself, because if it comes to it I can assure you will do anything to still be here, I can almost promise you that.
Take a look through my Instagram or my Facebook, do I look like I’m having a terrible time? Does colostomy life look awful to you? Do I look like I’m missing out on anything?
So far this year alone I have been on countless incredible days out on the Belmond trains, Henley Regatta, theatre trips and weekends away as well as holidays to;
India x 1
Spain skiing x 1
Spain sunshine holiday x 4
Venice x 2
Plus an upcoming trip to Copenhagen for lunch and another ski trip this time to Obergurgl in Austria.
And without a doubt all of it is only possible because of my bag, it’s not the worst case scenario, it’s not ‘the end of the line’, or the end of the world and I most certainly wouldn’t rather be dead. It’s the most amazing life because I’m slightly differently plumbed to how I was born.
Take a look at the two photos above, one was before I was diagnosed with cancer, that me thought she just had IBS and piles, little did I know then that there was a festering tumour up my a*** determined to wreak havoc.
I was thin yes, and I was happy in myself, but I was in so much pain, I had been known to fall asleep biting on flannels I was in so much pain. I had been told it was only IBS and I thought IBS was that painful.
It was only after I was diagnosed a doctor informed me I shouldn’t have been in that much pain with IBS. But I believed what I had been told and put up with the pain and the other unpleasant issues an undiagnosed tumour brings.
The new me might be over two stone heavier and bagged but my god I’m literally living my best life!
I might be a bit biased but I don’t think it looks as bad as bagged life is imagined to be. Hahahahaha
I feel lucky I’m alive, and feel lucky that any weight gain goes straight to my boobs and bum… the Kardashian’s pay a fortune to get this lucky! Hahahahaha hahahahaha
I am a very lucky lady, and I feel that every day.
Just wanted to mention a friend of mine followed my simple guide to Venice in a day and had a fabulous time!!
Who knew travel writer was in my future as well as bah blogger. Hahahahaha
Happy travels. xx
Can I please please please ask you to share any of my blogs you liked or found useful. There’s two sorts of share options as I’ve pointed out in the above photos.
The more we spread positivity about stomas the less it’s a hidden subject. x