We sat down with the founder of popular, hero-inspired clothing company, Scamp & Dude, to talk about how shock diagnosis of cavernoma and emergency brain surgery has transformed her life, both personally and professionally.
Where is your cavernoma located?
My cavernoma was on my right frontal lobe.
How did you discover you had a cavernoma? What were your initial symptoms?
My first symptom was a severe headache and one of my eyes started to close. I went to the DR who sent me to hospital with suspected meningitis, but a CT scan revealed I’d suffered a brain haemorrhage and had a lump on my brain. We were yet to know what this lump was at this stage.
How did it feel when you first got your diagnosis?
I was absolutely terrified. My children were only 1 and 3 at the time and the fear of leaving them without a mum was absolutely heart breaking. Not knowing what the lump was, was also really scary. I didn’t know whether it was cancerous or a cavernoma until after the surgery.
What did your family and friends say when you told them the news?
I didn’t tell my husband until he arrived at the hospital the next day as he was home with our two small children. He walked in with several doctors around my bed discussing radiotherapy and brain surgery, so it was quite a shock for him. My poor parents were away with little reception, my mum was recovering from a foot operation and my dad had to walk to a bridge to get reception. My phone was running out of battery by the time I got to speak to Mum who had managed to hobble to find some reception, so I said “I need to be quick as I’m about to die so if I get cut off speak to Dad as he knows all the details” I meant my phone was about to die but my poor mum didn’t realise that. We can laugh about it now….just.
How did you feel in the lead up to your surgery?
It’s true what people say about finding yourself at the pearly gates when you are facing something major like brain surgery. I couldn’t stop asking myself if I was proud of how I’d lived my life. I knew I’d been a good person, but I kept asking myself whether I‘d done enough good and couldn’t get rid of this awful sinking feeling knowing that it might be too late to make a change. I made a pact with myself that if I made it through my surgery, I would find a way to help people and do more good.
Saying goodbye to my children to go into theatre was hands down the hardest thing I’ve ever had to do. I’d left letters for my whole family hidden around the house which they would have discovered if I hadn’t made it through. There was no way I could tell them how I was feeling before the surgery as emotions were so high as we were all so desperately trying to keep it together.
What was your first thought when you came round after the op?
When I came out of theatre and realised I’d been given a second chance at life, I was high as a kite. This was partly due to the morphine and party due to the sheer relief, I was so happy to be alive. The need to help people and to make a difference was so strong that I made myself a pact that my next business would be one full of purpose and something that truly helped people.
What advice would you give to others preparing for surgery, was there anything you wished you’d known beforehand?
My main worry was being separated from my children, and worrying how they’d cope without me while we were apart. It was this feeling that inspired the creation of Scamp & Dude. I wished I’d been able to give my children a Superhero to watch over them while we were apart and imagined a cuddly toy Superhero with a pocket on the back to hold a photo so they could have held me close. I used this idea as a get well goal and as soon as I was out of hospital I started looking into manufacturers and designs to create these Superhero Sleep Buddies so I could donate one to a child who loses a parent or is seriously ill themselves for every one sold. I decided I wanted a clothing range to accompany the Superhero Sleep Buddies so created a superpower infused clothing range for kids to fill them with superpowers when they were apart from their loved ones. Each garment has a Superpower Button so kids can press it for a burst of superpowers when they need it most. So if anyone is worrying about their children feeling scared about a parent being in hospital, head to our site and get them a Superhero Sleep Buddy to watch over them.
Practical advice for the surgery I would say sleep propped up, the swelling overnight caused me a lot of pain but once I started sleeping sitting up it was much better.
How has your cavernoma experience impacted your personal life? What about your business?
I definitely appreciate life so much more now but when it came to launching Scamp & Dude, the biggest impact was the fact that I no longer see any barriers. I wasn’t put off by the fact I had never worked in production and had no idea how to find a factory, I knew I could learn and totally embraced the challenge. I was so grateful to be alive and nothing was going to stop me.
I wanted to make sure my next job after my recovery would be about helping other people, giving back and making a difference. Scamp & Dude is just that, it is powered by kindness and we‘ve now donated over 4000 Superhero Sleep Buddies and over 4000 Super Scarves to people having a really hard time and we’ve also donated over 460k worth of sweatshirts to NHS staff and patients in their care too which makes me very happy.
What would you say to someone at the start of their cavernoma journey?
Try and stay calm and trust the specialists. There are so many good news stories, mine included, so focus on those and stay positive.
What has having a cavernoma / your cavernoma experience taught you?
I came out of my ordeal with a new fire in my belly, determined to make a difference, to make my life count and create a brand that helps other people. Something really good can come from the toughest of times if you channel your energy in the right way.
You can shop the full range, including Superhero Sleep Buddies, Scarves and more at www.scampanddude.com