A DAWLISH woman says each day is a struggle and she feels ‘like Edward Scissorhands’ after a rare tumour left her with a prominent scar on her hand.
Leona Bull, 52, wants to raise awareness after being diagnosed with Dermatofibrosarcoma protuberans (DFSP) in August 2023.
She had the area around the soft tissue tumour on her right hand removed but is now in daily pain and struggles to grip.
Leona also has reduced usage of her left hand after being hit in the face by a wheeled bin.
The bin damaged the nerves in her neck, which now affect her arms and hand.
She says each day is a struggle and, currently, she can’t drive.
Leona said: ‘I'm taking it day by day. I'm like Edward Scissorhands.’
She first noticed a bump on her hand in 2018 and went to see a doctor in 2019 when it hadn’t gone away.
Doctors refused to remove it a first, telling her it was a "cosmetic" issue, she claims.
But Leona said: ‘It got so big and was impacting my nerves on my thumb. I was getting electric shocks.’
She was finally able to get the lump removed in July 2019 but was told it was benign.
Leona was left with a little scar and nothing more.
But in April 2020 a freak accident caused severe damage to her other hand and arm.
While trying to move a commercial bin she was hit in the face and chest with the lid.
She initially thought her injuries would be minor but her arteries started to bulge and she was diagnosed with arterial thoracic outlet syndrome, a condition which affects the subclavian artery in your thoracic outlet in your chest.
Leona said: ‘I looked like the Incredible Hulk.’
She went for major surgery in March 2021 to try and fix the muscle damage but the operation left her left arm paralysed.
In 2022 Leona noticed the lump on her right hand had grown back.
She said: ‘It had grown back around the scar tissue.’
After getting it checked out, doctors told her not to worry but in 2023 the lump started to get bigger and Leona pushed for it to be removed.
She said: ‘It looked like it was tracking on my skin.’
She was referred privately to Exeter Medical Hospital and had it removed in August 2023.
The lump was tested and came back as benign but her surgeon sent it away for molecular genetic testing and it came back as DFSP.
Leona said: ‘It’s incredibly rare and quite aggressive.’
She had to have further surgery in November 2023 at the Royal Devon and Exeter Hospital to have more skin removed to make sure they had got rid of all the cancer before it could spread.
Leona said: ‘’I had a massive hole in my hand. I had skin taken from my groin and put in my hand.
‘I lost a lot of nerve function on the right hand. My hands are sore.’
Leona is now on medication every day to ease the pain and numbness and is currently unable to drive.
She had an operation on January 3, 2024 to remove a lump on her roof of her mouth to make sure it is nothing sinister.