Jo’s Story

Keloid from a tumour

Jo Johnston had a benign tumour removed from her jaw. The wound did not heal properly, leaving her with a keloid on her next and a sister scar on her hip.

We sat down with Jo to record some short videos about her experience.

I don’t think you understand the impact of a scar.

I don’t think my husband, friends or family understand the impact of my scar – as much as I explain to them some things are just not able to be comprehended until you experience it.

I was in my late thirties when my wisdom tooth fell out. There was no blood, no pain – it was very odd. I went to the dentist for an X-Ray, and they saw a shadow on my jaw. That shadow became a lesion, which became a tumour.

In 2018, I had a major eight and a half hour surgery to remove the tumour. I had part of my jawbone removed and replaced with bone and tissue from my hip. After that, I had a number of complications and had weekly trips back to North Manchester Hospital for lots of smaller procedures removing tissue and fluid, packing with antiseptic and manuka honey, re-stitching and correcting which has left my scar jagged and angry (I also have a matching scar that runs a similar length from my waist to my groin, but we can leave that one alone.)

Everyone, and I mean everyone, assumes that the issue with my scar is visual.

‘Why don’t you wear a scarf?’

‘Perhaps a little bit of make-up could make a big difference’.

People expect me to hide my scar, to be upset. They tell me how brave I am and that most women would be devasted. They ask how my husband feels about it and comment about how pretty I used to be. They try to guess why and what happened without asking me…and these are the comments from the people with the best of intentions.

The truth is, I don’t really care how it looks. I don’t care about the visual side. My scar is my badge of honour.

The whole experience has made me a different person, a better person – I have more empathy, more understanding. And my scar is a sign of that.

Jo Johnston

That’s not to say living with a scar is easy. It’s hard. As much as my scar is a symbol of my resilience, it’s also a constant reminder of everything I went through. I can’t look at my scar with thinking about the first time the word tumour was said to me, or waking up alone in a high dependency unit groggy after my surgery hoping everything was going to be ok.

I remember the nurses turning on the feeding tube and being nil by mouth for a week; realising how much movement I’d lost in my jaw, being unable to smile. It took hours of exercises just to be able to open my mouth enough to be able to eat soft food again. To this day I still struggle with some foods, like pizza (but it was a good day, the day I could eat a steak again!)

I remember kissing my husband for the first time after the surgery and realising that it would never feel the same again – I’ve lost feeling in part of my face and mouth.

I remember the piles of new pyjamas and nightdresses I had to ask visitors to buy as every day I had fluids leaking out of various drains and tubes.

There are nice memories too, warm memories. Like gossiping with the nurses as the new wave of junior doctors began their first placements; the cheers from the women on the ward when I was finally given my crutches and walked with my dad carrying my epidural, feeding bag behind me; singing songs with my husband which involved lots of ‘ooooos’ and ‘eeeees’ to get the movement back in my face.

These and much, much more are the memories running through my mind every day when I sit down to massage moisturiser into my scar or when I catch a glimpse of myself in a mirror unexpectedly, or when I’m concentrating, brushing my teeth to make sure I don’t dribble down the front of my clothes. Which leads me nicely onto the most important point…

My scar is not a stand-alone ailment which can be viewed in isolation. Not just because of the how I feel about it psychologically – there is a very real and everyday physical connection between my scar and my jaw. I have to massage my scar twice a day, which always brings about a range of emotions. The pocket of fluid that stills sits above my scar under my chin that pops and crackles every time I massage it reminding me of the regular ‘milking’ I had to do for weeks.

And then there’s the pain and the itching. Some nights I’ll wake up at 2:30 am scratching and itching as it pulls and twists. Sometimes it feels like someone is forcing a pin through it for a few seconds – which can be a tad distracting when speaking at a meeting in work. Then there’s the times when I’m walking down the road and realising I’m gurning as I’m trying to pull back against the scar tightening in the wind. Or when I have to study a menu and assess how tired I am by how numb my face feels before figuring what I can manage. I still don’t have full movement in my neck and am only just now able to attempt some of the yoga positions I used to do with ease.

A scar is never just a scar.

Jo Johnston

Whoever has a scar has experienced some kind of trauma, whether it’s an accident, an illness, surgery, assault. Those are the things that make you stronger, make you better. A scar is just a product of that.

Living in a scar free world means no one would have to experience pain, itching, embarrassing questions. If we can prevent scarring, then obviously that has got to be a good thing. In the meantime, I will be proud of my scar and all it means.

We’re closer than ever to a world without scarring.

With your support, we can fund groundbreaking research that will unlock the secrets of scar free healing and transform the lives of people with scars, both now and in the future.

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BEHIND EVERY SCAR, THERE’S A STORY.

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Lois’ Story

Lois Collier was attacked in November 2017. She sustained scarring on her face and hands, and suffered from PTSD.

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Jaco’s Story

Dr Jaco Nel was hospitalised with sepsis in 2016 after a cut got infected. He now lives with scarring on his face and hands, and is a double amputee.

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