Over the last three days I’ve discovered that life can be a combination of three things…
- The good
- The bad
- The ugly
Want to know why? Well sit comfortably guys because I’ve got a three-part story to tell – but not necessarily in that order.
Now I’ve made it no secret that my stoma has been a little more than problematic over the last three years. I know I’ve talked about rectal brain matter and prolapsed intestines, not to mention constipation and you all know that Wilomena blows up to the size of a tennis ball so it must come as no surprise that we’ve been waiting for the last two and a half years to sort this out.
About a month ago – almost three months after attending A&E at Wythenshawe hospital, a letter dropped onto my doormat informing me that my face-to-face appointment with Ms Telford (creator of all things Wilomena) would take place on Wednesday 15th December 2021.
The appointment was at 3:30pm, so what’s the best way to spend half a day before we have to go to the hospital? Go Christmas shopping at the Trafford Centre with mum, of course.
What did I buy, you ask?
A bacon sarnie and a bottle of baby shampoo – absolutely nothing Christmas related whatsoever but we did have a nice morning together and it is the perfect place to kill time when you’ve got something that’s make or break hanging over your head.
Let’s cut to the chase now because no one needs to know that as we drove to Wythenshawe Hospital I had to ask mum to stop at Sainsbury’s around the corner so I could use their toilet for a nervous wee. This appointment was a long time coming, it’s been like climbing the Himalayas (I’ve never climbed the Himalayas but I’ve heard its pretty steep) so as I sat in the vacant waiting room trying not to hyperventilate under my mask, clutching the strap on my rucksack and fumbling in the front pocket for my phone, I looked around and I got a glimpse of Ms Telford. It was relief! She was here! It was real! It was just like the moment when you’re at a concert that you’ve been waiting all your life to go to and the lights dim, the crowd goes wild and the singer comes on and you think…
“…I’m here! We’re in the same room, we’re breathing the same air…”
That’s what it was like seeing Ms Telford in a corridor, it was like seeing Cher in concert! With this in mind my nerves kicked in. Now I knew that she wouldn’t be doing the initial examination but she would pop in at some point to check and then clarify things but even so, I couldn’t help but panic. What if they didn’t look at Wilomena, what if they didn’t look at anything? What if they did the same thing everyone else has done and they just said…
It’s hard to describe what the last chance saloon looks like, but I’m pretty sure it looked like this appointment. I’d been through every other avenue and got nowhere. The GP’s told me to lose weight. They said I wasn’t putting my bag on properly. The stoma nurses told me all stoma’s look the same, mine was no different. They said my stomach muscles had dropped – I don’t even think that’s possible but I went with it because they’re supposed to know what they’re talking about. They’re all supposed to know what they’re doing!
I can’t explain what it was like sitting in that corridor waiting to see someone whose role it was to find out what actual problem is…but this is a blog so I’ll try… It was like being an X-Factor finalist waiting to see if you’re in the running for Christmas number one, 50/50.
I was called into the room by a really tall man with a kind face and he said my name wrong but I didn’t care. I walked into the room and he introduced himself as…I have no idea… I’m really sorry but his name flew right over my head and I feel awful because he was so nice so let’s call him Mr Surgeon, because I do remember that bit, he said he was a surgeon.
The first thing Mr Surgeon said was…
“We were supposed to see you in January.”
(and he didn’t mean 2022, he meant 2021!)
“It’s okay, we can blame Boris for that.”
“This is our fault, it shouldn’t have taken this long, I’m sorry you’ve had to wait.”
Inside my head I said…
“Don’t cry, do not cry!”
We sat at his desk and before he could say a single word, I took out my phone and I said…
“I’ve got pictures! I’ve taken pictures and a video of what my stoma does and no one else has looked at them. Do you want to see them? Do you want to see the pictures?”
My phone was literally shaking in my hands and I felt ridiculous. I was not on trial, but it felt like it. I was not in an interview, but it felt like it. I knew that if he didn’t see it for himself, if he didn’t look at the photos on my phone then I would be leaving the room with the same thing that I’ve left every single other room…nothing.
So he looked at the photos and then he stood up and he said…
“Let’s have a proper look then.”
“Do you want me to take my bag off?”
“Yes, let’s see what it’s doing in there.”
I took off my bag and true to form Wilomena was bulging like an angry bloated garden worm and I thought…
“Oh thank God!”
Mr Surgeon had a look, he poked it, prodded the area around it and nodded.
“Okay you can put your bag on now.”
At the sink I sorted through the swabs and a clean bag with my stupidly shaky fingers, he had a look at the computer screen and then turned back to me. He explained that the stoma had prolapsed and it was always a risk of stoma surgery anyway. The option to fix it is it to re-site the stoma, so build a new one, but it’s still a possibility that the same thing will happen again. I had to weigh up the option of whether or not I wanted to risk it.
As I stood by the sink with a naked Wilomena flopping about out like a really inappropriate and badly designed Christmas bauble I said…
“I’m not a hyperchondriac. I am not making this up and I am not making this out to be worse than it is. I love this thing, but this thing hurts!”
And he said…
“No, I know that. There is a very real problem despite all the other letters pointing to it being in your imagination.”
My eyes filled up with a river of tears. Can you imagine what that felt like?
It was humiliating. In my imagination?! It was more than soul destroying, I was completely destroyed.
I waited about ten minutes to see Ms Telford. She swooped in like a caped crusader and straightaway she said…
“You’ve waited too long for this.”
Then she looked at the photos on my phone, she looked at me, poked around the edges of my clean bag and said…
“I would never have given you a stoma this big. Let’s refashion it. Let’s give it a facelift.”
(basically I don’t need a new one, she can just fix Wilomena and she can stay where she is)
When I told her about the colon problem she said…
“What have you used in the past?”
“Nothing, the stoma nurses and the doctors say to just ride it out.”
Ms Telford said…
“That’s rubbish, there’s all sorts of things you can try before we decide to take your colon out, but we’ll runs some tests to check and see how damaged it is.”
I told her a surgeon at Bolton hospital told me would never have given me a stoma and oh my god I cannot begin to describe what the atmosphere in that room felt like. It was disbelief and horror mixed with a million apologies that wasn’t their responsibility to make.
When Ms Telford and Mr Surgeon looked at me for a final time she said…
“I’m going to put you on the list for a re-fashioning. I don’t know when it will be but you’re on the list now.”
…and there was that sound again, the voices of a thousand angels singing; and they said…
“You’re in the right place now.”
As I write this I know I could be waiting for Wilomena’s facelift for years but in some way it doesn’t matter because now I know I’m finally being taken seriously; now I’ve proved I’m not a hypochondriac and I am not being dramatic.
I think it’s fairly obvious that the professionals who wrote the previous letters were distracted by my Bipolar diagnosis and you can argue the case against that but when you’ve been sat in my shoes for a long enough time, it will only take a few seconds for you to agree with me.
This blog is not about feeling sorry for myself because you should know by now, that’s not my bag (literally). This is about turning something ugly into something pretty; and that’s exactly what Wilomena will be when she’s had her facelift.
My mum comes from a family of around eleven aunties and uncles and sixteen cousins. When she was growing up she lived opposite two of her cousins David and Graham who I always thought of as uncles; they might never have known that but I did. I thought a lot of both of them because in my eyes they were the opposite of my dad, they were kind, they were open minded and I never felt judged; I always felt accepted.
A few years ago I was having a whinge to Graham, I can’t remember what it was about but at the end of my rant as he was drying his hands on the tea towel he was holding, he leaned again the sink and he said…
“You know what that is Kat? It’s all part of life’s rich tapestry.”
I don’t think I’d ever heard anything quite as profound as that and I can’t think of anything I’ve heard since that beats it. When he passed away a few years ago, that was the one sentence that I made sure I remembered.
David passed away a couple of weeks ago with his funeral set for Thursday 16th December 2021. At the funeral the eulogy was a recollection of the man he was and all of the incredible things that he did; things that I didn’t know about. It was sad, really sad and it was a reminder that people leave us regardless of how much we want them to stay.
When I was a kid David used to ask me what I wanted to be when I grew up, I always answered…
“A writer, like Enid Blyton.”
I remember showing him the battered exercise book I was writing my first novel in aged eleven. My dream may still a dream but it was supported and whenever I was in hospital battling against Bernard the Bipolar, David and his wife Joyce wife always sent me a card. Graham sent postcards when he went on holiday and I still keep them all as bookmarks in my notebooks as a reminder that I can still be whatever I want to be.
All things public speaking is a little like a river run dry right now, that is until the 6th October happened.
I’m on LinkedIn but I’m rubbish at it. I don’t know how it works, I don’t really know what it is and I forget to post stuff on it. Whenever I receive a message it’s usually someone wanting to train me as a speaker – already got that, thanks – or the want me to speak at a massive conference in Paris but I have to pay my way to do it. So on the 6th October when I received a message from Nico Bains I automatically assumed it was the same sort of thing.
Oh how I was wrong! And I love it when I’m wrong about these things. Here’s the link to the project he’s working on with his brother Ryan:
We had a couple of messages and then a call and I felt a tug, right in my soul. Their focus is mental health and fitness and finding the right kind of fitness that benefits you and your own mental health. I did tell him, I was honest, the only time I do any kind of exercise is when I’m running for a bus; when he said that didn’t matter and that he just wanted me involved in some way I said an automatic yes! I’d just lost my friend and the day we had the first call it was her funeral the day after. I thought now more than ever was the time to stand up and do something.
Covid is killing people in far too many ways and it doesn’t look like anything is going to change any time soon so rather than doing what I’ve been doing for the last twelve months – waiting for it to pass – I thought it was time to take back some control. Nico has a vision of what he wants and he’s found a whole stack of people to take part in this massive project with the intention for it to reach people across the whole of the world.
Long story short, Nico and Ryan came up to Manchester from Luton on Friday 17th December to film my story following the story of another person. They hired a studio just on the outside of the city centre that was up about five flights of stairs – now that’s exercise right there! I took my mum with me – obviously, my roadie – I had no idea what to expect, I had no idea what I was doing but I had to look professional, however being in front of a camera is not my happy place. I am far from being a Love Island contestant, my hair is falling out left right and centre, my dress was bulging on one side because Wilomena wanted in on the action and the minute this filming session was finalised, a giant spotty blob blob thing formed itself on my chin – I mean really!
But did any of that matter? In the end no, not really, because I loved every single second of it. Nico and Ryan are two of the most genuine guys I’ve ever met. They asked mum if they could call her mum and for the rest of the afternoon we were like a little family; everyone trying to right the wrongs of the mental health world.
For the first time in months I felt part of something that was outside of work. I was accepted, not just based on being a mental health speaker but also as an individual, the kind of person I am, for real. And this is just the start, this was just the introduction to my tiny part of their huge project and I can’t wait for the next one.
These guys are travelling across the country to collect the stories from the people they’ve got involved and they’re asking for nothing but our time and that right there is what I call…
In truth the last three days have been exhausting. Everyday I have learned something new. I’ve learned that even with a physical problem, a real black and white problem, a stoma that cries out…
“Hey! I look weird and I make Kat hurt!”
…I am not believed because I have another illness that you can’t see.
I’ve learnt that we don’t appreciate what we have until its gone. We don’t say thank you enough to the people who make a difference in our lives and we don’t realise that the dreams we have can actually play out; they just might look different.
I’ve learnt that good people do exist. LinkedIn is not always about selling something to someone. It can be about taking part and working together for a cause that will always need people to plough on through because it never gets easier.
It never gets easier, but people can get stronger.
The last three days have been an array of life changing events and emotions and not just for me. There are a lot of things I don’t understand about life and every day I try to wrap my brain around how the world works but, if there is one thing that’s for sure and one thing that I do know; it’s that everything we do, everywhere we go, whatever comes our way; it’s all part of …
…life’s rich tapestry.
Dedicated to David and Graham, for being the inspirations that you never knew you were.