Helping Karen and Lucy
An extraordinary encounter
When Lucy was given her diagnosis of a brain tumour, it came out of the blue. She had had no symptoms except some double vision that came on suddenly one day while cycling. She was diagnosed with a very rare tumour called a skull-based chondrosarcoma, a “one in a million” she was told.
After two operations to debulk the tumour, Lucy then received proton beam therapy as this was the gold standard for treating skull base tumours. She recovered well from this radiotherapy and returned to work. Five years later however, an MRI scan indicated the tumour was growing back. She faced a difficult decision as her medical team wanted to perform radical surgery, which was higher risk than the other surgeries she had endured.
It was at this time that Lucy found her local Brain Tumour Support Group and met Karen.
As they got chatting, they discovered something extraordinary.
Against all the odds, Karen had the same tumour as Lucy. While Lucy was at the start of her journey, Karen had already battled for 11 years.
“It was incredible,” said Lucy. “I was so worried about this operation and there was Karen, with all sorts of side effects, but such a positive attitude. We had so much in common – we’d even had proton beam therapy in the same clinic in Switzerland!”
Karen and Lucy
Karen was diagnosed with a skull-based myxoid chondrosarcoma after suffering hearing loss and experiences headaches and a twitch in her face.
“At first they thought it was multiple sclerosis,” said Karen. “I’ve been on hell of a journey in the last eleven years. I’ve had several operations and proton beam therapy; I’ve had blood clots, MRSA and meningitis; my swallowing muscle was damaged and I had to have a feeding tube; my vocal chords and facial nerves were also damaged by the surgeries. I have hearing loss in both ears; and I have weakness down one side of my body. But, as I told Lucy, I’d have the operations again.”
“I have some great hearing aids, I am driving again, I am doing yoga, I’m getting on with life. When I was 40, I did not think I would see my 50th birthday. But here I am today and some of my wonderful medical team even came to my party!”
Talking to Karen gave Lucy the strength to go ahead with the 20 hr operation, which involved taking an artery from her arm and reconstructing one in her brain. She was in hospital for seven weeks and, just as Karen had, even contracted meningitis. But today she is well enough to go back to her monthly Support Group meetings and is looking to get back to work.
Both Karen and Lucy have found their support group a big help.
“It is just wonderful to be able to go and sit with the others and not worry that my voice is different or that my face is different or that I cannot eat the cakes because I know I will choke on them,” says Karen. “No one is judging. No one is comparing.”
For Lucy, the support group gave her chance to meet Karen and others who have been on similar journeys. “Meeting Karen gave me the hope and confidence to face radical surgery,” said Lucy. “And it is very comforting to know that the group is there for long-term support. They are like another family.”
Read more about how we help
Brain Tumour Support offers support to brain tumour patients and their families in a variety of ways - support groups, one-to-one, counselling, telephone and on-line support.
For more information call our Support Line on 01454 422701 or email firstname.lastname@example.org